What a whirlwind I have been in lately. I honestly don't even know where to start. As I sit and stare at this monitor trying to figure out how to get this all out.......
After the scopes last month and the follow up appointments I had, I still felt like I had nothing tangible to hold onto. My mind compartmentalizes everything and tries to rationalize everything. In reality, that is impossible. Not everything in the world has a rhyme or reason. Not everything is fair, and nothing is black and white. Why, then, does my mind torture me this way? I don't know, but I try to laugh it off and keep a grasp on reality. As you can imagine, this is a challenge.
My most recent visits have left me with a few more answers and a plan of action. I guess that was the hardest to come to grips with, I had no plan of action to follow. So, with no easy way to explain things I will do my best. It is so cathartic being open and honest and laying it all out there. I don't feel like I have to explain or defend myself all the time, even if no one reads the blog. It's out there.
Digestive issues have only progressed in recent weeks. Although I have been through all the testing that would uncover a clear diagnosis, I am usually the exception to that rule. A diagnosis of chronic gastritis and pernicious anemia was clear. The colon, however; has inflammation, but there is no clear source or disease process. At this point it has been declared inflammatory bowel disease. Let me just say, the treatment for these is definitely something that takes getting used to. It is yet another life style change. Plus, I am doing, learning, and speaking of things I never imagined would be part of my life. I guess the thought of invincibility discriminates against no one.
It has almost become a daily torture. Not only is there a new set of pills and treatment I have to work into my day, but the symptoms continue. Not to the same degree, but they are there. It is unimaginable unless you go through it yourself. I actually worked with patients (when I worked) that had similar illnesses of the digestive system. I remember feeling so sorry for them because they looked miserable most of the time. I had the knowledge about the conditions, but never realized the enormity of it all until it hit me.
I have to admit, this has been the most traumatic and devastating disease process I have had to embrace. I imagine it like a stack of blocks my son would build. One block wide, with each disease diagnosis and treatment outline, add a new block. Once the stack gets tall it begins to sway and possibly crumble. My tower has tumbled. I have to pick up the pieces. I have to gather all the new information along with the lack thereof. I need to decide how I am going to stack these blocks in a way that they balance and hold strong as a standing structure. I am working on it.
This week, I finally saw an immunologist. This is supposed to be the doctor that gathers all the clues and puts them altogether to make a big picture. Everyone around me is so hopeful. Everyone around me is convinced that someone will find the source that links all these autoimmune diseases together. I, however; lack that hope. I have been to UNM. I have been to the Mayo Clinic. I have been to doctors and specialists all over. In the beginning they are all bull dogs. After a few tests are run and the doctor is left stumped, I have been tossed to the curb or the doctor has thrown in the towel. I pray this is not the case this time.
The doctor seemed, at first impression, ready to take on the task. He began testing right away. We did find out I am allergic to cats. That is funny because my parents had cats my entire life. I never knew. I am also allergic to several trees and grass as well as mold. My breathing is labored due to the inflammation in my belly. It was good to walk out of the doctor's office with some new information. I would imagine, since I went my entire life not treating these allergies, treating them may relieve some of the general symptoms I feel everyday. The other thing this new doctor did was decide to test my immune system itself. Can you believe that not one doctor has done that before? Many have tested for specific antibodies that are linked to specific diseases, but not one doctor has tested the function and activity of the immune system.
The lab tests were done yesterday. The doctor seemed eager to start this journey so he told me I would get the results once he got them. If need be, we will do more testing thereafter. They drew so much blood, I can't see how nothing would show up, but let's be realistic. We are talking about me here. I am the queen of going against the grain. I am a master at not fitting into the box. I am the outlier.
I make an effort not to get my hopes up. I do not have very much faith in science and medicine at this point. Those who practice this are merely humans. Mistakes are made, things are overlooked, bias is inevitable. I can only pray for the miracle of answers to come our way.
This Christmas season is difficult. My six year old son understands things more and more. We have spent months focusing on my health. Since Thanksgiving it has only become more consuming. We decorated our house. We have bought presents. We plan on spending time with family. I just pray his memories of this season are not tainted by all of this.
Merry Christmas and Happy New Year!
Wednesday, November 30, 2011
Tuesday, November 15, 2011
Step By Step
This is beginning to turn into a theme, much like my life has been for the past several years. Every few months things take a bad turn. Doctors usually are rendered clueless and boggled that something is happening again. They begin to search for answers, each time thinking we are getting closer and closer to the key that unlocks the mystery of me. I am always filled with this false sense of hope that the key will be found. I am starting to learn I need to find my hope elsewhere.
I saw my rheumatologist yesterday. I really love the doctors I have on my side. They are all bulldogs. They are all compassionate. They are all grounded. I filled him in on the information I got from my GI doc. I always bring paperwork and lab results so that all my doctors are on the same page and have accurate information. As he looked over it all he just kept saying, "hhmm curious........interesting..........hhhmmm curious." I laughed because that is the way I am feeling. But he is the doctor, he should know more. I decided it is time I really start advocating for myself.
I am tired of seeing doctor after doctor. I travel up to 250 miles for these appointments on some occasions. I wait in the waiting room for 20 minutes or more. I sit in the exam room for 15 minutes or so waiting to see the doctor. The doctor comes in (whatever specialty) and does his work. That usually takes only 5 to 7 minutes. They sign a refill prescription and schedule a follow up appointment. Usually somewhere in the appointment the overlapping symptoms and such are discussed. Often times the doctors question each other or say what they'd do differently had that been their specialty. Never do these doctors talk to each other. So, yesterday I requested that my rheumatologist get on a conference call with my primary and gastroenterologist to bounce ideas off each other. I would like them to come to a consensus and work together. He had no qualms about it, so I felt successful. One step at a time.
Rheumatology is a specialty that is difficult. Often times people are seen by a rheumatologist with very vague symptoms that other doctors have ignored or brushed aside. With this knowledge, I asked. I asked all the questions that eat away at me at night. Not one doctor has flat out told me what they are looking for or what their brain tells them when they see my chart. They keep me on a need to know basis, and apparently they do not think I need to know very much until they have certainty on their side. "What could this be? What would the immunologist be looking for? What do you think is going on?" He answered. "I'd look into MEN syndrome which is multiple endocrine and could cause a lot of these autimmunities you have. Possibly Schmidt syndrome. It's hard to say." I was pleased he had a thought. I was pleased to know he was not clueless. The answer was still very vague, but there were words I could take and research. That's what I did.
I will not bother you with the definitions or explanations of these syndromes. You are more than welcome and capable of looking them up yourself. I will educate and speak more on them if a diagnosis is made. Ultimately, what I got from my conversation with the rheumatologist was similar to what I have gotten from several other doctors in recent years. Yes, we are coming up with answers, but we are treating what we can treat. We cannot replace anything or reverse or cure anything. Quality of life is what it is. I have been told to prepare my family that things will get tougher. We are doing everything we can do.
One step at a time. Each flare up gets us closer and closer to the full picture. I believe with each hurdle I am learning. I will come to a place where I can accept and embrace the totality of it all.....someday.
I saw my rheumatologist yesterday. I really love the doctors I have on my side. They are all bulldogs. They are all compassionate. They are all grounded. I filled him in on the information I got from my GI doc. I always bring paperwork and lab results so that all my doctors are on the same page and have accurate information. As he looked over it all he just kept saying, "hhmm curious........interesting..........hhhmmm curious." I laughed because that is the way I am feeling. But he is the doctor, he should know more. I decided it is time I really start advocating for myself.
I am tired of seeing doctor after doctor. I travel up to 250 miles for these appointments on some occasions. I wait in the waiting room for 20 minutes or more. I sit in the exam room for 15 minutes or so waiting to see the doctor. The doctor comes in (whatever specialty) and does his work. That usually takes only 5 to 7 minutes. They sign a refill prescription and schedule a follow up appointment. Usually somewhere in the appointment the overlapping symptoms and such are discussed. Often times the doctors question each other or say what they'd do differently had that been their specialty. Never do these doctors talk to each other. So, yesterday I requested that my rheumatologist get on a conference call with my primary and gastroenterologist to bounce ideas off each other. I would like them to come to a consensus and work together. He had no qualms about it, so I felt successful. One step at a time.
Rheumatology is a specialty that is difficult. Often times people are seen by a rheumatologist with very vague symptoms that other doctors have ignored or brushed aside. With this knowledge, I asked. I asked all the questions that eat away at me at night. Not one doctor has flat out told me what they are looking for or what their brain tells them when they see my chart. They keep me on a need to know basis, and apparently they do not think I need to know very much until they have certainty on their side. "What could this be? What would the immunologist be looking for? What do you think is going on?" He answered. "I'd look into MEN syndrome which is multiple endocrine and could cause a lot of these autimmunities you have. Possibly Schmidt syndrome. It's hard to say." I was pleased he had a thought. I was pleased to know he was not clueless. The answer was still very vague, but there were words I could take and research. That's what I did.
I will not bother you with the definitions or explanations of these syndromes. You are more than welcome and capable of looking them up yourself. I will educate and speak more on them if a diagnosis is made. Ultimately, what I got from my conversation with the rheumatologist was similar to what I have gotten from several other doctors in recent years. Yes, we are coming up with answers, but we are treating what we can treat. We cannot replace anything or reverse or cure anything. Quality of life is what it is. I have been told to prepare my family that things will get tougher. We are doing everything we can do.
One step at a time. Each flare up gets us closer and closer to the full picture. I believe with each hurdle I am learning. I will come to a place where I can accept and embrace the totality of it all.....someday.
Friday, October 28, 2011
A New Chapter?
Although I would rather not think about any of this right now, I'd like to update you all on our most recent findings.
This week was the conclusion of the testing my GI had set up to determine what was going on with me digestively. Let me just say, the preparation for many of these tests is near torture so I am so glad they are over. I suppose if this is an open forum and I am trying to connect with others who may be dealing with similar issues I need to be honest and open as well. I had a small bowel follow through, a hida scan, an abdominal ultra sound, blood work, stool samples, a colonoscopy, and an upper endoscopy. All of which, except the stool sample and blood work, required fasting of some sort. Some required additional preparation, non of which was enjoyable. When you are suffering, you are willing to do nearly anything to relieve the pain. That's what I did.
At this point, there was no evidence of Ulcerative Colitis or Crohn's disease. That was our biggest fear and the doctors initial thought. The biopsies are still out so we will know for sure once we get them back. That is a relief. What they did find was my immune system attacking (surprise, surprise) the parietal cells of my stomach. Leaving my stomach a beautiful disaster.
Parietal cells secrete gastric acid and intrinsic factor. Intrinsic factor deals directly with the absorption of vitamin B12. The inability to absorb B12 is called pernicious anemia. The treatment is usually B12 supplements taken sublingually or by injection. Gastric acid is a digestive fluid. Gastric acid plays a key role in the breakdown and digestion of proteins, by activating digestive enzymes. Together the enzymes and acids unravel the long chains of amino acids found in proteins.
The doctor immediately checked my B12 levels, but I have been on B12 injections for a few months now based on a blood test that showed antibodies against these parietal cells. I suspect the levels should be normal and I will continue the injections. As for the gastric acid, we were told there is no replacing it. My stomach did show a lot of damage so I was placed on a medication to heal it. I understand this medication is normally used to treat stomach ulcers.
I was told at the conclusion of the final scope that a referral was going to be sent to an immunologist. At this stage of the game, the goal is to stop the immune system from attacking healthy organ systems and continue fighting foreign invaders. In a few weeks I will have follow up appointments and get the final results of all the tests. The GI doctor seemed positive and said, "We're on the right track."
I have mixed emotions about this all. I assume anyone would. On one hand, I am happy that they actually found the source of this unyielding pain. I am glad there is some validation. At some point, you start to feel crazy feeling so sick with no answers. I am also glad to be heading in the right direction to having the full picture of my health. On the other hand, I am overwhelmed and frightened. I was looking forward to some relief from the pain and discomfort. I knew that would be unlikely if it turned out to be UC or Crohn's so when I heard the intestines looked good I was excited. To know that there is no way to replace the gastric acid is rough because I know the lack of digestion is causing the pain. Bundle that along with the lack of absorption of key nutrients leads to feeling pretty run down quite often. I am frightened by what the immunologist may find. I realize I should compartmentalize. Looking at this as a whole is too overwhelming. But human nature....well, I'll say my nature, is to plan and prepare...and worry I guess. My way of dealing with this is to lay it all out, even the "unimportant" factors, and then compartmentalizing and move on. That's what I'll do here.
I have been so self conscious about my physical appearance. Let's face it, what woman isn't. I feel very vain and superficial for feeling this way, but I will not deny it. I have acne. I hate it. I learned that this is a symptom of the antibodies attacking the parietal cells. Now, I know it will not clear up so I will have to learn to deal with a teenagers face in adulthood. I have also had a very straight framed body. With the most recent weight loss, I feel like a little boy. That ultra thin hungry look is not what I go for. Add that to the fact that I cannot wear clothing that is too tight or restricting on the abdominal area because it just puts too much pressure there, makes me feel sloppy. I am in definite need of a fashionista to find some comfy, but flattering clothes. That's enough vanity for today.
Now moving on to the physical aspects. I am overwhelmed and frightened by the fact that they can continue to "band-aid" the pain, but it will never be resolved. I am learning to eat slowly and chew very well. I am so limited, at this point, as to how much and what I can ingest. Many woman would be happy to be worrying about being too thin or being forced to eat less and be conscious about what is in your mouth, but it is not something that I enjoy at all. Our culture and society is inundated with food. Social gatherings, holidays, dates, movies, etc all involve food. It is an integral part of our lives. To me it is nothing but the enemy. I was hoping this would not be the case for the duration, but the harsh reality is, it will be. Rough road to be looking down.
So, I take all of this. The good, the bad, and the ugly. The truths, the uncertainties, and the predictions. Gather them all in a pile. I will take it and put it at the back of my mind. When something needs to be accessed, it'll be there. In the meantime, I wait. I focus on my family. I focus on my gorgeous son, who, by the way, turned 6 yesterday. I take his smiling face and incredible heart and mind and I run with it. Soak it up. Keep my eye on the prize and leave the rest to God. The burden is too big to carry so I imagine lifting it off of my shoulders and throwing it to Him. I imagine my own father, who passed from complications of Type I diabetes nearly 24 years ago, looking down on me. I feel him smiling down on me and guiding me. I long to hear his voice. I would love to ask for advice. I know he is listening. I know he is talking to me. I just look for the signs. I embrace my parents love and support. I appreciate the warmth of my sister who lets me lose it whenever I feel the need. I admire my husband for his strength and unyielding love throughout this all. And I remember, no one is put on this earth to suffer. It only enhances the good in life.
This week was the conclusion of the testing my GI had set up to determine what was going on with me digestively. Let me just say, the preparation for many of these tests is near torture so I am so glad they are over. I suppose if this is an open forum and I am trying to connect with others who may be dealing with similar issues I need to be honest and open as well. I had a small bowel follow through, a hida scan, an abdominal ultra sound, blood work, stool samples, a colonoscopy, and an upper endoscopy. All of which, except the stool sample and blood work, required fasting of some sort. Some required additional preparation, non of which was enjoyable. When you are suffering, you are willing to do nearly anything to relieve the pain. That's what I did.
At this point, there was no evidence of Ulcerative Colitis or Crohn's disease. That was our biggest fear and the doctors initial thought. The biopsies are still out so we will know for sure once we get them back. That is a relief. What they did find was my immune system attacking (surprise, surprise) the parietal cells of my stomach. Leaving my stomach a beautiful disaster.
Parietal cells secrete gastric acid and intrinsic factor. Intrinsic factor deals directly with the absorption of vitamin B12. The inability to absorb B12 is called pernicious anemia. The treatment is usually B12 supplements taken sublingually or by injection. Gastric acid is a digestive fluid. Gastric acid plays a key role in the breakdown and digestion of proteins, by activating digestive enzymes. Together the enzymes and acids unravel the long chains of amino acids found in proteins.
The doctor immediately checked my B12 levels, but I have been on B12 injections for a few months now based on a blood test that showed antibodies against these parietal cells. I suspect the levels should be normal and I will continue the injections. As for the gastric acid, we were told there is no replacing it. My stomach did show a lot of damage so I was placed on a medication to heal it. I understand this medication is normally used to treat stomach ulcers.
I was told at the conclusion of the final scope that a referral was going to be sent to an immunologist. At this stage of the game, the goal is to stop the immune system from attacking healthy organ systems and continue fighting foreign invaders. In a few weeks I will have follow up appointments and get the final results of all the tests. The GI doctor seemed positive and said, "We're on the right track."
I have mixed emotions about this all. I assume anyone would. On one hand, I am happy that they actually found the source of this unyielding pain. I am glad there is some validation. At some point, you start to feel crazy feeling so sick with no answers. I am also glad to be heading in the right direction to having the full picture of my health. On the other hand, I am overwhelmed and frightened. I was looking forward to some relief from the pain and discomfort. I knew that would be unlikely if it turned out to be UC or Crohn's so when I heard the intestines looked good I was excited. To know that there is no way to replace the gastric acid is rough because I know the lack of digestion is causing the pain. Bundle that along with the lack of absorption of key nutrients leads to feeling pretty run down quite often. I am frightened by what the immunologist may find. I realize I should compartmentalize. Looking at this as a whole is too overwhelming. But human nature....well, I'll say my nature, is to plan and prepare...and worry I guess. My way of dealing with this is to lay it all out, even the "unimportant" factors, and then compartmentalizing and move on. That's what I'll do here.
I have been so self conscious about my physical appearance. Let's face it, what woman isn't. I feel very vain and superficial for feeling this way, but I will not deny it. I have acne. I hate it. I learned that this is a symptom of the antibodies attacking the parietal cells. Now, I know it will not clear up so I will have to learn to deal with a teenagers face in adulthood. I have also had a very straight framed body. With the most recent weight loss, I feel like a little boy. That ultra thin hungry look is not what I go for. Add that to the fact that I cannot wear clothing that is too tight or restricting on the abdominal area because it just puts too much pressure there, makes me feel sloppy. I am in definite need of a fashionista to find some comfy, but flattering clothes. That's enough vanity for today.
Now moving on to the physical aspects. I am overwhelmed and frightened by the fact that they can continue to "band-aid" the pain, but it will never be resolved. I am learning to eat slowly and chew very well. I am so limited, at this point, as to how much and what I can ingest. Many woman would be happy to be worrying about being too thin or being forced to eat less and be conscious about what is in your mouth, but it is not something that I enjoy at all. Our culture and society is inundated with food. Social gatherings, holidays, dates, movies, etc all involve food. It is an integral part of our lives. To me it is nothing but the enemy. I was hoping this would not be the case for the duration, but the harsh reality is, it will be. Rough road to be looking down.
So, I take all of this. The good, the bad, and the ugly. The truths, the uncertainties, and the predictions. Gather them all in a pile. I will take it and put it at the back of my mind. When something needs to be accessed, it'll be there. In the meantime, I wait. I focus on my family. I focus on my gorgeous son, who, by the way, turned 6 yesterday. I take his smiling face and incredible heart and mind and I run with it. Soak it up. Keep my eye on the prize and leave the rest to God. The burden is too big to carry so I imagine lifting it off of my shoulders and throwing it to Him. I imagine my own father, who passed from complications of Type I diabetes nearly 24 years ago, looking down on me. I feel him smiling down on me and guiding me. I long to hear his voice. I would love to ask for advice. I know he is listening. I know he is talking to me. I just look for the signs. I embrace my parents love and support. I appreciate the warmth of my sister who lets me lose it whenever I feel the need. I admire my husband for his strength and unyielding love throughout this all. And I remember, no one is put on this earth to suffer. It only enhances the good in life.
Saturday, October 22, 2011
Family Support
Please check out this blog. It is written by my brother-in-law who happens to be a jack of all trades. Not only am I proud of his support, but I am proud of the work he has on his blog. Check him out!
http://someaudioguy.blogspot.com/2011/10/my-photography-and-helping-cause.html
http://someaudioguy.blogspot.com/2011/10/my-photography-and-helping-cause.html
The ins n outs
I am writing this today in anticipation of Monday's procedures. I am finally being scoped to find answers to my weight loss, lack of digestion, pain, and other unmentionables. I have been waiting years for relief. The last several weeks has been full of tests and scans. I am completely exhausted, but that light at the end of the tunnel keeps me pushing forward.....along with that amazing smile on my son's face!
Last Saturday my GI doc called and told me that I tested positive for an infection called Clostridium Difficile also known as C Diff. He put me on an antibacterial medication and instructed to start it immediately, and to report back to him on Wednesday. I had no idea what this was so I looked it up. As far as I understand it is a bacteria in the colon. A lot of people are exposed to this or have it in their body, but their immune systems can take care of it. Apparently, if you have been on antibiotics for a long period of time they can diminish the good bacteria allowing the C Diff to take over. I have not been on antibiotics recently. Another risk factor is if you live in a long term care facility or have been in the hospital for more than 2 weeks. Again, not a part of my life recently. And finally, the last risk factor is AIDS/HIV or a suppressed immune system. I trust it is the latter.
The day before that phone call I had an ultrasound. It was check on my internal organs, the ducts, their functioning, and blood flow. The woman who did the US was great. She was so warm, friendly, and compassionate. It is people like her that remind me how good the world really is. She found some calcifications on my gallbladder. At this moment in time, to my knowledge, no doctor has reviewed that report. I believe it will need to be removed by the way she described it, but that is another waiting game.
I have been running myself ragged trying to get things in order at home. I usually know when things are going to get difficult and try to plan accordingly. Although, Monday's procedures are routine and outpatient, I have no idea what they will see. My primary doctor has been out of town all week so I assume when she returns she will see the US report as well as the tests results and make a determination on what steps to take next. Fortunately or unfortunately because I have been in this position before for other diseases or organ systems, I know the next few weeks if not months will take a lot out of me. My husband works full time so I try to make sure there are only necessities to take care of while I am out of commission. Make his life as easy as possible.
Tonight, we are planning on attending a Halloween party. This should be exciting and fun. I have not gone out for fun in over a month. I rarely see many of my friends and the majority of them will be at this party. My son's aunt will spend time with him so my husband and I can have a night off. I should be anxiously awaiting the fun......instead I am anxiously awaiting how I will feel. My stomach is not so great today. I feel a lot of pressure under my ribs and tenderness throughout my abdomen. I have no appetite and a horrible taste in my mouth (probably from the antibacterial). I am nervous about dressing up because woman's costumes are generally pretty skimpy. Even though I am tiny, I am very self conscious because of my gut issues. I also get cold very easily and it tends to make me ache. I think I covered my bases by buying some clothes to layer, but hopefully keep the costume cute. I hope I can push this all aside for a few hours and enjoy myself. I just need some rest. Wish me luck.
Last Saturday my GI doc called and told me that I tested positive for an infection called Clostridium Difficile also known as C Diff. He put me on an antibacterial medication and instructed to start it immediately, and to report back to him on Wednesday. I had no idea what this was so I looked it up. As far as I understand it is a bacteria in the colon. A lot of people are exposed to this or have it in their body, but their immune systems can take care of it. Apparently, if you have been on antibiotics for a long period of time they can diminish the good bacteria allowing the C Diff to take over. I have not been on antibiotics recently. Another risk factor is if you live in a long term care facility or have been in the hospital for more than 2 weeks. Again, not a part of my life recently. And finally, the last risk factor is AIDS/HIV or a suppressed immune system. I trust it is the latter.
The day before that phone call I had an ultrasound. It was check on my internal organs, the ducts, their functioning, and blood flow. The woman who did the US was great. She was so warm, friendly, and compassionate. It is people like her that remind me how good the world really is. She found some calcifications on my gallbladder. At this moment in time, to my knowledge, no doctor has reviewed that report. I believe it will need to be removed by the way she described it, but that is another waiting game.
I have been running myself ragged trying to get things in order at home. I usually know when things are going to get difficult and try to plan accordingly. Although, Monday's procedures are routine and outpatient, I have no idea what they will see. My primary doctor has been out of town all week so I assume when she returns she will see the US report as well as the tests results and make a determination on what steps to take next. Fortunately or unfortunately because I have been in this position before for other diseases or organ systems, I know the next few weeks if not months will take a lot out of me. My husband works full time so I try to make sure there are only necessities to take care of while I am out of commission. Make his life as easy as possible.
Tonight, we are planning on attending a Halloween party. This should be exciting and fun. I have not gone out for fun in over a month. I rarely see many of my friends and the majority of them will be at this party. My son's aunt will spend time with him so my husband and I can have a night off. I should be anxiously awaiting the fun......instead I am anxiously awaiting how I will feel. My stomach is not so great today. I feel a lot of pressure under my ribs and tenderness throughout my abdomen. I have no appetite and a horrible taste in my mouth (probably from the antibacterial). I am nervous about dressing up because woman's costumes are generally pretty skimpy. Even though I am tiny, I am very self conscious because of my gut issues. I also get cold very easily and it tends to make me ache. I think I covered my bases by buying some clothes to layer, but hopefully keep the costume cute. I hope I can push this all aside for a few hours and enjoy myself. I just need some rest. Wish me luck.
Wednesday, October 12, 2011
Moments of Weakness
The month of October has hit me like a ton of bricks. I knew the 5 weeks following my first gastroenterologist appointment would be difficult, but I never imagined it would be this hard. For the past several months these digestive issues have only worsened. They are at a point where they affect every aspect of my day every day. There was about 6 or 7 days at the end of September that I was blessed with some relief, but the fear was never far behind. Testing will be done (hopefully) by the end of October so I was prepared for no relief until thereafter.
In recent posts I have talked about my primary care doctor showing more signs of concern. She is a bulldog, and I love that about her. She does not want to leave any stone unturned. In addition to the 4 tests the GI set up for me, my primary added a few additional scans. At first thought, I was pleased. There have been some doctors who tested for one thing, and when nothing was uncovered they would excuse the symptoms. That usually only created a more devastating realization later. So, I am glad my current primary is more thorough.
To put this in perspective for you I will give you a glimpse of my schedule of appointments. (Because these are GI issues I will leave out details to save my own pride) I met with my GI doc on September 16th. He scheduled a test for September 22 as well as October 24. Both of these are out of town and fasting. (Fasting is a Type I diabetics worst enemy) In addition to these tests I have to have blood work and samples dropped off around October 16. My primary decided I needed two additional tests. I was scheduled for October 10 & 12 for these. Again, both fasting. These are all scans of some sort, not blood work so the fasting is not immediately resolved.
I dealt with the appointment on Sept 22 with the help of some amazing friends. I left that appointment feeling like I could conquer this. I thought, "the next five weeks of testing won't be so bad, and at least I'll have an answer soon." Boy, was I wrong. I fasted after a rough weekend for the appointment on October 10. I get to the office and find out the machine went out on the prior patient. "We are not sure how long it will take to fix. If you want to go home we can call you as soon as it's up. It could take all day." This was at 9 in the morning. I declined and reluctantly rescheduled the appointment for October 14th (another day of fasting).
This morning I woke up fasting for a scan that was scheduled for 1pm. That, in itself, is difficult for a healthy individual. While I was showering and mentally preparing to get through this day, my phone rang. The gentleman wants to push my appointment out another hour. Apologetically he explains, "they completely overloaded me today, I just can't do it sooner. Unless, you'd like to reschedule?" In my head I am thinking, "It would've been easier if this had been earlier in the morning, but the thought of ruining another day with fasting is too much." So, here I am waiting an additional hour to go to this scan. I was also told by the nice gentleman to bring an iPod or something because the scan takes about an hour and a half to two hours. Great! Two more hours with no food.
I know it sounds like an oxymoron for me to complain about having to fast when I already struggle eating to begin with. It would be nice if I could go about my days with no food to avoid the GI symptoms, but I am diabetic. Fasting only adds to blood sugar issues. Also, I am still losing weight. I am pretty sure fasting is not on the recommendation list for better nutrition. Bottom line of it all, my life is being dictated by my symptoms and appointments.
I feel completely out of control. I do try to be as positive as possible at all times for the sanity of my family as well as myself. There are so many factors I have no control over, I have to let those go. The problem I am having now is, these uncontrollable factors are affecting my life far too much. They talk about depression being severe enough to treat if it starts affecting your daily life. Similar comments have been made about addictions. If they are affecting your daily routine and responsibilities, they need to be addressed. What do I do when tests, appointments, and symptoms are so severe I no longer feel like my days are my own. I can barely schedule anything of my own choosing in the midst of all of this. Add to that my husband and son who need me. I would rather spend a day doing homework and running from practice to practice for my 5 year old than spending the day at a doctor's office while his aunt takes on my son's schedule.
Everything in moderation is something I hold dear to my heart. I am allowing this anger and frustration to flow at this point. I am allowed to be less than perfect. Today I chose to let go. Although I know there are policies, procedures, schedules, rules, regulations, etc. that affect how any business is run as well as health care facilities, I believe this is a huge short coming.
It is now at a place where I am no longer looked at as a person. I am a number or a name on a schedule. The symptoms, pain, suffering, daily struggles are non-existent to these workers. I understand that completely with my short career in health care. You have to separate yourself in order to do your job properly. You must find a balance. These are still patients...PEOPLE with families and lives outside of this scan or that test. It is not a haircut we can continually reschedule or a nail appointment that needs to be pushed back.
I feel like there is no one out there that relates to me. I feel like an outsider in my own world. How do I work through these issues without sounding over dramatic and selfish? Who do I talk to about this stuff without feeling like they are just humoring me? Where do I turn?
I pray. I talk to my husband and family. I stay in the present moment when I am with my son as much as I can. I continue to do things I enjoy to have a sense of self in this mess. I am thankful for the blessings in my life. I try to learn from ever difficult situation I face. At this moment in time I feel like screaming from the Empire State Building, "I learned the lessons. I am trying to do the best I can. Please, give me a break!!" I just need some time.
I wish every minute of everyday that someone out there will have the answer. Maybe some doctor or some researcher has seen something similar to my case and has an approach that may make my quality of life a little easier. I want my focus to be on my son and my family more than my obligations created by my health. Sometimes it is good to really feel what you are feeling!
Then you stop.....Live for today, pray for tomorrow.
In recent posts I have talked about my primary care doctor showing more signs of concern. She is a bulldog, and I love that about her. She does not want to leave any stone unturned. In addition to the 4 tests the GI set up for me, my primary added a few additional scans. At first thought, I was pleased. There have been some doctors who tested for one thing, and when nothing was uncovered they would excuse the symptoms. That usually only created a more devastating realization later. So, I am glad my current primary is more thorough.
To put this in perspective for you I will give you a glimpse of my schedule of appointments. (Because these are GI issues I will leave out details to save my own pride) I met with my GI doc on September 16th. He scheduled a test for September 22 as well as October 24. Both of these are out of town and fasting. (Fasting is a Type I diabetics worst enemy) In addition to these tests I have to have blood work and samples dropped off around October 16. My primary decided I needed two additional tests. I was scheduled for October 10 & 12 for these. Again, both fasting. These are all scans of some sort, not blood work so the fasting is not immediately resolved.
I dealt with the appointment on Sept 22 with the help of some amazing friends. I left that appointment feeling like I could conquer this. I thought, "the next five weeks of testing won't be so bad, and at least I'll have an answer soon." Boy, was I wrong. I fasted after a rough weekend for the appointment on October 10. I get to the office and find out the machine went out on the prior patient. "We are not sure how long it will take to fix. If you want to go home we can call you as soon as it's up. It could take all day." This was at 9 in the morning. I declined and reluctantly rescheduled the appointment for October 14th (another day of fasting).
This morning I woke up fasting for a scan that was scheduled for 1pm. That, in itself, is difficult for a healthy individual. While I was showering and mentally preparing to get through this day, my phone rang. The gentleman wants to push my appointment out another hour. Apologetically he explains, "they completely overloaded me today, I just can't do it sooner. Unless, you'd like to reschedule?" In my head I am thinking, "It would've been easier if this had been earlier in the morning, but the thought of ruining another day with fasting is too much." So, here I am waiting an additional hour to go to this scan. I was also told by the nice gentleman to bring an iPod or something because the scan takes about an hour and a half to two hours. Great! Two more hours with no food.
I know it sounds like an oxymoron for me to complain about having to fast when I already struggle eating to begin with. It would be nice if I could go about my days with no food to avoid the GI symptoms, but I am diabetic. Fasting only adds to blood sugar issues. Also, I am still losing weight. I am pretty sure fasting is not on the recommendation list for better nutrition. Bottom line of it all, my life is being dictated by my symptoms and appointments.
I feel completely out of control. I do try to be as positive as possible at all times for the sanity of my family as well as myself. There are so many factors I have no control over, I have to let those go. The problem I am having now is, these uncontrollable factors are affecting my life far too much. They talk about depression being severe enough to treat if it starts affecting your daily life. Similar comments have been made about addictions. If they are affecting your daily routine and responsibilities, they need to be addressed. What do I do when tests, appointments, and symptoms are so severe I no longer feel like my days are my own. I can barely schedule anything of my own choosing in the midst of all of this. Add to that my husband and son who need me. I would rather spend a day doing homework and running from practice to practice for my 5 year old than spending the day at a doctor's office while his aunt takes on my son's schedule.
Everything in moderation is something I hold dear to my heart. I am allowing this anger and frustration to flow at this point. I am allowed to be less than perfect. Today I chose to let go. Although I know there are policies, procedures, schedules, rules, regulations, etc. that affect how any business is run as well as health care facilities, I believe this is a huge short coming.
It is now at a place where I am no longer looked at as a person. I am a number or a name on a schedule. The symptoms, pain, suffering, daily struggles are non-existent to these workers. I understand that completely with my short career in health care. You have to separate yourself in order to do your job properly. You must find a balance. These are still patients...PEOPLE with families and lives outside of this scan or that test. It is not a haircut we can continually reschedule or a nail appointment that needs to be pushed back.
I feel like there is no one out there that relates to me. I feel like an outsider in my own world. How do I work through these issues without sounding over dramatic and selfish? Who do I talk to about this stuff without feeling like they are just humoring me? Where do I turn?
I pray. I talk to my husband and family. I stay in the present moment when I am with my son as much as I can. I continue to do things I enjoy to have a sense of self in this mess. I am thankful for the blessings in my life. I try to learn from ever difficult situation I face. At this moment in time I feel like screaming from the Empire State Building, "I learned the lessons. I am trying to do the best I can. Please, give me a break!!" I just need some time.
I wish every minute of everyday that someone out there will have the answer. Maybe some doctor or some researcher has seen something similar to my case and has an approach that may make my quality of life a little easier. I want my focus to be on my son and my family more than my obligations created by my health. Sometimes it is good to really feel what you are feeling!
Then you stop.....Live for today, pray for tomorrow.
Tuesday, October 4, 2011
You Cannot Hold Me Down
After about a week and a half of feeling practically normal, I hit a wall this past Sunday. Mostly tired and achy. I can feel pleurisy acting up in my upper left back that is now starting to radiate to my right side as well. That is my cue to put the brakes on. I have obviously done too much for my body to handle and it is yelling, "STOP!" This time, I listened.
I had a check up with my primary care physician today. Due to recent concerns, particularly digestive stability, they are keeping a close eye on me these days. With the week and a half of feeling awesome (in my world) I had hoped I would show some progress on the scale. My appetite has increased a little and I have tried to indulge in more "comforting" foods opting for the higher calorie, and maybe less nutrient rich, foods. I know my husband has enjoyed the meals for sure.
For whatever reason, I am always nervous for appointments. Even routine check ups with a doctor I have been seeing for over three years leads to terrible anxiety. "What am I doing wrong? What will they find this time? Hopefully my blood sugar is in normal range so I don't hear anything from the nurse." These are all common thoughts that roll through my mind the hours leading up to an appointment. Today was no different other than the additional thought of, "I hope I put on some weight." Obviously a very strange thought to be going through a 28 year old woman's mind.
The nurse calls me up very quickly, actually interrupting my reading (imagine that). With confidence I get on the scale......and see her pushing that dumb little thing further to left. My heart drops. 2 more pounds lost in the last four weeks. How can this be possible....again? I even ate nearly an entire box of brownies I had made myself on Saturday night. I had planned to have them around for the week, but they were so good I couldn't stop. Thankfully, my husband and mother in law jumped in and ate some to save me. Either way, I have indulged and indulged and still keep losing.
At this point in time, I am actually feeling some fear. I try to do everything they tell me. I research and educate myself on healthy weight gain. I do not want to endanger another body part by putting on pounds in an unhealthy manner. That would only cause more trouble down the road. The look in my doctor's face is a look I have only seen a few times in my life. It is definitely a look of concern. Normally, I hear some words of encouragement, a plan of action, or what to expect from a change. Not on these occasions. When the doctor is left with no words and that concerned look in her face, it radiates pretty deep.
I left the appointment in despair. I couldn't help but think that my body is slowly shutting down despite any and all efforts. I see people rush through life consuming horrible things with bad habits and not a care in the world (or so it seems), but their bodies hold up. I understand everyone has a story. Everyone deals with some struggle even if it is not physical. I understand that the unhealthy habits will and do lead to problems....but I can't help but envy the healthy/ healthier.
Then, I read a blog from one of my favorite sites, sixuntilme.com. It talked about health in a manner of perspective not science. Just like any other aspect of life, I suppose, health is in the eye of the beholder. I decided, this is my healthy. I am doing everything in my power to be the best I can be. Beyond that, it is out of my control. Why should I feel guilt? Why should I feel a need to act? Why should I envy what I do not have? I've done what I can, let it go.
I went to pick up the light of my life from school after my pity party. Sadly, his day did not go well either. A few altercations with some kids which meant he lost his sticker for the day. He was very upset. When he explained to me what he did wrong (he is very honest), I simple said, "Well, you learn from your mistakes so you know how to react differently next time. No big deal. We'll try again tomorrow. " The poor little guy walked all the way to our truck with the bottom lip out. When we got home he cried to Daddy about his disappointment in his self (very wise 5 year old). Daddy responded similarly to me. "Tomorrow is a new day. It happened, you had consequences, now let's move on." That got me thinking.
Here I was feeling sorry for myself for over 3 hours, and honestly several weeks now, and I am trying to teach my son to not hold on to negative feelings. ?! This is the hand I have been dealt. I have also been dealt an amazing husband, a beautiful son, a great family, supportive loving friends, stability, a home, a vehicle, two polar opposite dogs who bring joy everyday, and the love of God. I have incredible knowledge about health, nutrition, and the human body. I cannot even list all the blessings. I could list the downfalls. That tells me, I have more good than bad in my life. Take that immune system! Coming atcha antibody ninja girl. You cannot hold me down.
I had a check up with my primary care physician today. Due to recent concerns, particularly digestive stability, they are keeping a close eye on me these days. With the week and a half of feeling awesome (in my world) I had hoped I would show some progress on the scale. My appetite has increased a little and I have tried to indulge in more "comforting" foods opting for the higher calorie, and maybe less nutrient rich, foods. I know my husband has enjoyed the meals for sure.
For whatever reason, I am always nervous for appointments. Even routine check ups with a doctor I have been seeing for over three years leads to terrible anxiety. "What am I doing wrong? What will they find this time? Hopefully my blood sugar is in normal range so I don't hear anything from the nurse." These are all common thoughts that roll through my mind the hours leading up to an appointment. Today was no different other than the additional thought of, "I hope I put on some weight." Obviously a very strange thought to be going through a 28 year old woman's mind.
The nurse calls me up very quickly, actually interrupting my reading (imagine that). With confidence I get on the scale......and see her pushing that dumb little thing further to left. My heart drops. 2 more pounds lost in the last four weeks. How can this be possible....again? I even ate nearly an entire box of brownies I had made myself on Saturday night. I had planned to have them around for the week, but they were so good I couldn't stop. Thankfully, my husband and mother in law jumped in and ate some to save me. Either way, I have indulged and indulged and still keep losing.
At this point in time, I am actually feeling some fear. I try to do everything they tell me. I research and educate myself on healthy weight gain. I do not want to endanger another body part by putting on pounds in an unhealthy manner. That would only cause more trouble down the road. The look in my doctor's face is a look I have only seen a few times in my life. It is definitely a look of concern. Normally, I hear some words of encouragement, a plan of action, or what to expect from a change. Not on these occasions. When the doctor is left with no words and that concerned look in her face, it radiates pretty deep.
I left the appointment in despair. I couldn't help but think that my body is slowly shutting down despite any and all efforts. I see people rush through life consuming horrible things with bad habits and not a care in the world (or so it seems), but their bodies hold up. I understand everyone has a story. Everyone deals with some struggle even if it is not physical. I understand that the unhealthy habits will and do lead to problems....but I can't help but envy the healthy/ healthier.
Then, I read a blog from one of my favorite sites, sixuntilme.com. It talked about health in a manner of perspective not science. Just like any other aspect of life, I suppose, health is in the eye of the beholder. I decided, this is my healthy. I am doing everything in my power to be the best I can be. Beyond that, it is out of my control. Why should I feel guilt? Why should I feel a need to act? Why should I envy what I do not have? I've done what I can, let it go.
I went to pick up the light of my life from school after my pity party. Sadly, his day did not go well either. A few altercations with some kids which meant he lost his sticker for the day. He was very upset. When he explained to me what he did wrong (he is very honest), I simple said, "Well, you learn from your mistakes so you know how to react differently next time. No big deal. We'll try again tomorrow. " The poor little guy walked all the way to our truck with the bottom lip out. When we got home he cried to Daddy about his disappointment in his self (very wise 5 year old). Daddy responded similarly to me. "Tomorrow is a new day. It happened, you had consequences, now let's move on." That got me thinking.
Here I was feeling sorry for myself for over 3 hours, and honestly several weeks now, and I am trying to teach my son to not hold on to negative feelings. ?! This is the hand I have been dealt. I have also been dealt an amazing husband, a beautiful son, a great family, supportive loving friends, stability, a home, a vehicle, two polar opposite dogs who bring joy everyday, and the love of God. I have incredible knowledge about health, nutrition, and the human body. I cannot even list all the blessings. I could list the downfalls. That tells me, I have more good than bad in my life. Take that immune system! Coming atcha antibody ninja girl. You cannot hold me down.
Friday, September 30, 2011
Some Great Surprises
Finally, it is Friday again. This past week has been a whirlwind. It seems like so much has happened. In the life of someone with chronic illness, not everything is bad. Thank God for that!
At the end of last week I had a small bowel follow through. The doctors are still trying to work out my stomach issues. I have been suffering from nausea, vomitting, indigestion, inflammation, and other non-mentionables. I would say since about Easter, it has gotten increasingly worse. Although, I am excited and hopeful for answers and relief, I loathe procedures as much as anyone else.
For a small bowel follow through the patient drinks barium. Not a tasty treat, I might add. 16-20 ounces of a very thick chalky substance. Not easy for someone with stomach and digestive issues. Luckily, I had two very supportive friends accompany me. They took time out of their days off to spend a few hours with me at the hospital, keep me entertained and light-hearted, and then take me for lunch and shopping. Can friends get better than that?! Radiologists do several scans to watch the barium travel through your digestive system, particularly the small bowel. A day I had dreaded turned out to be a day of good laughs with a few scans interrupting our conversations.
I was sure I would be throwing up and in some incredible pain by the time it was over. To my surprise, I felt great. The aftertaste did make me feel queasy, but with some food in my stomach a smile wasn't hard to find. I even went as far as getting a diet soda fountain drink in the afternoon. A treat I have not indulged in for over a year due to my stomach issues. It was sweet heaven. Diet coke has always been a vice for me, and it was just another check on my list of don'ts for so long.
Since that day, I have been able to wear jeans. In the last 8 days, I have rarely had abdominal pain or discomfort. Some of the unmentionables have not stopped, but it has slowed. Nausea is gone, and appetite is back. My thoughts on this, "Could barium be a treatment for what ailes me?" It's a glimmer of hope. If nothing else, maybe the flare that has lasted these past several months has waned for a bit. Either way, I am thoroughly enjoying every minute of normalcy I am experiencing. The little things are so important. It is amazing the grace I feel right now.
During a run early this week, I was bitten by a dog. This dog is a frequent morning greeter during my runs. He always seems a little agressive, but his owners are usually enjoying their coffee on the porch with him so they keep him controlled. I have never felt scared because the owners are very pleasant. Not on this particular day. He was not tied up like usual and his owners were not outside. He lunged and got me. I had an angel watching over me. I jumped back, and a man passing by stuck his truck in between the dog and me. It felt like forever, but was probably only a few seconds, the owner rushes out and wrangled the dog. He took the dog inside and slammed the door. That was the end of that. Never coming out to see if the dog had done damage or if I was ok. The man who stopped made sure I was fine before he drove off. It was all very traumatic, but could not have turned out better. I walked away with a swollen bruised knee, hardly any puncture wounds, and a bruised ego for sure. I can only thank God for protecting me, and that amazing man who stopped to help. It could've been so much worse.
I also made the decision to start selling Mary Kay this week. As noted in previous posts, I am permanently disabled due to my comorbidities. I have always been a productive, Type A personality. Being disabled is a difficult task for me. No matter how many times I think I have come to accept this, I still always feel like their are ants in my pants. I need to do something for me. I started this blog. I have been doing a lot of research and advocating for healthier choices in my area. I came across the decision for Mary Kay because I can actually use the products. Hypoallergenic, natural products. The company itself does some wonderful things. I have been offered opportunities to work from home selling different products similar to the Mary Kay mode of operation. Nothing has really connected to me. This did. I am excited for this new journey, for this new opportunity.
My son started basketball practice this week. He is in a Boys & Girls club league for 6 & under. These kids are so adorable. Basketball is a perfect sport for my little energizer bunny. Watching him ppractice and make accomplishments he is proud of warms my heart every day. This combined with soccer will keep us all busy for the next few weeks, but the joy on his face is worth every second. He has also received a sticker for good behavior every single day this week so far. This is a huge accomplishment for him. We are so proud. If he comes home with one today, he will get a special surprise. He has completely exceeded our expectations, and that deserves recognition!
Tonight, I am making steak fingers with baked fries. A perfect comfort food for a Friday night. Even with all the diet restrictions, my family and I have come up with some great alternative ingredients to make some classics. My husband will be home from work early enough to join is for dinner. That is always a plus on a Friday night. We are also planning to have some friends over. I am also wearing jeans today. With all the bad things that I go through day in and day out, the good still outshines the bad. I am so grateful for all the prayers that are answered everyday. Not everything goes as I want it to or hope for, but so many times the unexpected turns out to be better than my hopes. Never a dull moment. I am so pleased to have the supportive and loving family that I do and the amazing friends that step up when no one else will. People like this, you do not let go. Cherish every second of this, I do!
At the end of last week I had a small bowel follow through. The doctors are still trying to work out my stomach issues. I have been suffering from nausea, vomitting, indigestion, inflammation, and other non-mentionables. I would say since about Easter, it has gotten increasingly worse. Although, I am excited and hopeful for answers and relief, I loathe procedures as much as anyone else.
For a small bowel follow through the patient drinks barium. Not a tasty treat, I might add. 16-20 ounces of a very thick chalky substance. Not easy for someone with stomach and digestive issues. Luckily, I had two very supportive friends accompany me. They took time out of their days off to spend a few hours with me at the hospital, keep me entertained and light-hearted, and then take me for lunch and shopping. Can friends get better than that?! Radiologists do several scans to watch the barium travel through your digestive system, particularly the small bowel. A day I had dreaded turned out to be a day of good laughs with a few scans interrupting our conversations.
I was sure I would be throwing up and in some incredible pain by the time it was over. To my surprise, I felt great. The aftertaste did make me feel queasy, but with some food in my stomach a smile wasn't hard to find. I even went as far as getting a diet soda fountain drink in the afternoon. A treat I have not indulged in for over a year due to my stomach issues. It was sweet heaven. Diet coke has always been a vice for me, and it was just another check on my list of don'ts for so long.
Since that day, I have been able to wear jeans. In the last 8 days, I have rarely had abdominal pain or discomfort. Some of the unmentionables have not stopped, but it has slowed. Nausea is gone, and appetite is back. My thoughts on this, "Could barium be a treatment for what ailes me?" It's a glimmer of hope. If nothing else, maybe the flare that has lasted these past several months has waned for a bit. Either way, I am thoroughly enjoying every minute of normalcy I am experiencing. The little things are so important. It is amazing the grace I feel right now.
During a run early this week, I was bitten by a dog. This dog is a frequent morning greeter during my runs. He always seems a little agressive, but his owners are usually enjoying their coffee on the porch with him so they keep him controlled. I have never felt scared because the owners are very pleasant. Not on this particular day. He was not tied up like usual and his owners were not outside. He lunged and got me. I had an angel watching over me. I jumped back, and a man passing by stuck his truck in between the dog and me. It felt like forever, but was probably only a few seconds, the owner rushes out and wrangled the dog. He took the dog inside and slammed the door. That was the end of that. Never coming out to see if the dog had done damage or if I was ok. The man who stopped made sure I was fine before he drove off. It was all very traumatic, but could not have turned out better. I walked away with a swollen bruised knee, hardly any puncture wounds, and a bruised ego for sure. I can only thank God for protecting me, and that amazing man who stopped to help. It could've been so much worse.
I also made the decision to start selling Mary Kay this week. As noted in previous posts, I am permanently disabled due to my comorbidities. I have always been a productive, Type A personality. Being disabled is a difficult task for me. No matter how many times I think I have come to accept this, I still always feel like their are ants in my pants. I need to do something for me. I started this blog. I have been doing a lot of research and advocating for healthier choices in my area. I came across the decision for Mary Kay because I can actually use the products. Hypoallergenic, natural products. The company itself does some wonderful things. I have been offered opportunities to work from home selling different products similar to the Mary Kay mode of operation. Nothing has really connected to me. This did. I am excited for this new journey, for this new opportunity.
My son started basketball practice this week. He is in a Boys & Girls club league for 6 & under. These kids are so adorable. Basketball is a perfect sport for my little energizer bunny. Watching him ppractice and make accomplishments he is proud of warms my heart every day. This combined with soccer will keep us all busy for the next few weeks, but the joy on his face is worth every second. He has also received a sticker for good behavior every single day this week so far. This is a huge accomplishment for him. We are so proud. If he comes home with one today, he will get a special surprise. He has completely exceeded our expectations, and that deserves recognition!
Tonight, I am making steak fingers with baked fries. A perfect comfort food for a Friday night. Even with all the diet restrictions, my family and I have come up with some great alternative ingredients to make some classics. My husband will be home from work early enough to join is for dinner. That is always a plus on a Friday night. We are also planning to have some friends over. I am also wearing jeans today. With all the bad things that I go through day in and day out, the good still outshines the bad. I am so grateful for all the prayers that are answered everyday. Not everything goes as I want it to or hope for, but so many times the unexpected turns out to be better than my hopes. Never a dull moment. I am so pleased to have the supportive and loving family that I do and the amazing friends that step up when no one else will. People like this, you do not let go. Cherish every second of this, I do!
Friday, September 23, 2011
Celiac Disease "invisible illness"
1. The illness I live with is: Celiac Disease
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: I have no idea
4. The biggest adjustment I’ve had to make is: eliminating gluten
5. Most people assume: it is an allergy
6. The hardest part about mornings are: missing doughnuts
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: wanting cookies
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I choose about invisible illnesses. Except when I have a seizure in front of people.
13. Regarding working and career: It is not entirely due to Celiac Disease, but I am disabled
14. People would be surprised to know: Even a crumb makes me extremely ill
15. The hardest thing to accept about my new reality has been: I will never eat regular bread again
16. Something I never thought I could do with my illness that I did was: eat pizza
17. The commercials about my illness: more gluten free options are coming out, but no commercials about the disease
18. Something I really miss doing since I was diagnosed is: meatball subs
19. It was really hard to have to give up: gluten
20. A new hobby I have taken up since my diagnosis is: cooking and nutrition
21. If I could have one day of feeling normal again I would: eat spaghetti
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial. Food is a bigger part of our lives than we think.
23. Want to know a secret? One thing people say that gets under my skin is: "Don't they have a pill for that."
24. But I love it when people: understand
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: Educate yourself and life becomes so much easier. I promise!
27. Something that has surprised me about living with an illness is: how painful contamination is
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Connective Tissue Disease/ Lupus "invisible illness"
1. The illness I live with is: Connective Tissue Disease
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: weight limitations (loose, painful joints)
5. Most people assume: I'm not sure many people even know about it
6. The hardest part about mornings are: they are slow moving
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: complete exhaustion
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I choose about invisible illnesses.
13. Regarding working and career: It is not entirely due to the CTD, but I am disabled
14. People would be surprised to know: My symptoms started with rashes
15. The hardest thing to accept about my new reality has been: That it is not going away
16. Something I never thought I could do with my illness that I did was: being able to run again, I had to take a long break
17. The commercials about my illness: rare
18. Something I really miss doing since I was diagnosed is: running as long as I wanted on Sundays
19. It was really hard to have to give up: the strength I thought I had
20. A new hobby I have taken up since my diagnosis is: relaxation- what a thought!
21. If I could have one day of feeling normal again I would: run as far as I could
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: not often a topic of conversation
24. But I love it when people: understand
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: I'm sorry. It will not be this bad all the time. You are not alone.
27. Something that has surprised me about living with an illness is: How different things are day to day
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Epilepsy "invisible illness"
1. The illness I live with is: Epilepsy
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: getting used to the interruptions in life
5. Most people assume: I don't know that people have assumptions about seizure disorders
6. The hardest part about mornings are: they are about the same
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: the fear of having a nighttime seizure
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I choose about invisible illnesses. Except when I have a seizure in front of people.
13. Regarding working and career: It is not entirely due to the seizure disorder, but I am disabled
14. People would be surprised to know: My symptoms started with my husband finding me passed out half dressed in our closet
15. The hardest thing to accept about my new reality has been: That it is not going away
16. Something I never thought I could do with my illness that I did was: have a driver's license
17. The commercials about my illness: rare
18. Something I really miss doing since I was diagnosed is: never waking up in the hospital
19. It was really hard to have to give up: A sense of control
20. A new hobby I have taken up since my diagnosis is: relaxation- what a thought!
21. If I could have one day of feeling normal again I would: feel free
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: "You've been doing too much, haven't you?" (after I have had a grand mal)
24. But I love it when people: Just know I did not cause this
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: I'm sorry!
27. Something that has surprised me about living with an illness is: How painful it is the days following a seizure
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Interstitial Cystitis "invisible illness"
1. The illness I live with is:Interstitial Cystitis
2. I was diagnosed with it in the year: 2004
3. But I had symptoms since: about 6 months prior
4. The biggest adjustment I’ve had to make is:having to pee all the time
4. The biggest adjustment I’ve had to make is:having to pee all the time
5. Most people assume: I have no idea
6. The hardest part about mornings are: having to pee the second my eyes open
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: waking up to pee
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: they have worked better that pharmaceuticals
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I can about invisible illnesses
13. Regarding working and career: It is not entirely due to the IC, but I am disabled
14. People would be surprised to know: My symptoms started with frequent urinary tract infections
15. The hardest thing to accept about my new reality has been: This is not a new reality, but when it was new the thought of living with this pain forever was imaginable
16. Something I never thought I could do with my illness that I did was: go into remission for 4 years
17. The commercials about my illness: are nonexistent
18. Something I really miss doing since I was diagnosed is: being able to travel with less hassle
19. It was really hard to have to give up:acidic foods
20. A new hobby I have taken up since my diagnosis is: this has not influenced new hobbies
21. If I could have one day of feeling normal again I would: leave the house without thinking about where the nearest bathroom is
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: this is rarely a subject of conversation
24. But I love it when people: treat me like a normal person
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: It is bearable, and you are not alone
27. Something that has surprised me about living with an illness is: that IC even existed
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Hashimoto's "invisible illness"
1. The illness I live with is: Hashimoto's Thyroiditis
2. I was diagnosed with it in the year: 1996
3. But I had symptoms since: about 6 months prior
4. The biggest adjustment I’ve had to make is: taking a pill every morning
5. Most people assume: It's no big deal
6. The hardest part about mornings are: Taking that pill 15 minutes before anything else enters my belly
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
2. I was diagnosed with it in the year: 1996
3. But I had symptoms since: about 6 months prior
4. The biggest adjustment I’ve had to make is: taking a pill every morning
5. Most people assume: It's no big deal
6. The hardest part about mornings are: Taking that pill 15 minutes before anything else enters my belly
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: this disease has little impact on my nights
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I can about invisible illnesses
13. Regarding working and career: It is not entirely due to the thyroid disease, but I am disabled
14. People would be surprised to know: My symptoms started with dry skin and hair loss
15. The hardest thing to accept about my new reality has been: This is not a new reality, but when it was new I was terrified of the regular blood tests
16. Something I never thought I could do with my illness that I did was: Live with it
17. The commercials about my illness: are nonexistent
18. Something I really miss doing since I was diagnosed is: waking up to no pills
19. It was really hard to have to give up: I did not have to give anything up to manage thyroid disease
20. A new hobby I have taken up since my diagnosis is: seeking out others who live with thyroid disease
21. If I could have one day of feeling normal again I would: Once on treatment I felt like myself again.
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: "I hear thyroid disease makes you fat."
24. But I love it when people: Want to know more to educate themselves
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: It sounds far more frightening than the reality is. 27. Something that has surprised me about living with an illness is: How ignorant I was about health when I was "healthy"
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Type I Diabetes "invisible illnesses"
1. The illness I live with is: Type 1 Diabetes
2. I was diagnosed with it in the year: 2003
3. But I had symptoms since: nearly 7 years prior (I had a long honey moon stage. Thank God)
4. The biggest adjustment I’ve had to make is: slowing down my active lifestyle due to frequent lows even with a very low dose of insulin
5. Most people assume: Well, I’m not sure what they assume – I think most people probably just don’t know much about it rather than make assumptions. I’d like to think that anyway.
6. The hardest part about mornings are: Praying my fasting glucose is in normal range so I can go for a run
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: resisting the late night sweet tooth
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible but the only option for Type I is insulin- pump or syringes?
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I can about invisible illnesses
13. Regarding working and career: It is not entirely due to the diabetes, but I am disabled
14. People would be surprised to know: That my father and sister also have Type I. 3 people in one immediate family is RARE.
15. The hardest thing to accept about my new reality has been: This is not a new reality, but acceptance is an ongoing process
16. Something I never thought I could do with my illness that I did was: Learn and remember how to manage food.
17. The commercials about my illness: Rarely have anything to do with Type I, and those that do don't have a big enough impact.
18. Something I really miss doing since I was diagnosed is: Not counting carbs
19. It was really hard to have to give up: My steadfast pace in college. I was diagnosed at age 20.
20. A new hobby I have taken up since my diagnosis is: Learning to cook real meals, not boxed
21. If I could have one day of feeling normal again I would: Go swimming for as long as I'd like, then take a run, then eat whatever I wanted without reading labels.
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.
23. Want to know a secret? One thing people say that gets under my skin is: "I know so and so who has diabetes and they can (insert activity here), how come you can't." We are not all the same.
24. But I love it when people: Want to know more to educate themselves
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: IT is a lot of information now, but you will be amazed how smart you are. IT does get easier, and you are not alone.
27. Something that has surprised me about living with an illness is: How ignorant I was about health when I was "healthy"
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Tuesday, September 20, 2011
Guilt
I think today it is important for me to discuss an issue that is often overlooked. Guilt is a natural emotion for human beings. It is there to keep us on track, and insure that we make the right choices. It can also be a terrible burden. Especially for those with chronic illnesses, and I imagine it may be worse for parents with chronic illnesses.
It is no surprise that the first question in any persons mind when they get a diagnosis is, "Why?" A natural human instinct to sooth ourselves is to try to piece it all together in such a way that it makes sense to our minds. The reality is, however, sometimes there is no rhyme or reason. This, I believe, is where the problem lies. In trying to figure out the "why" behind it all, we end up using ourselves as scapegoats when no other logical explanation can be found.
I have recently been overwhelmed with this emotion of guilt. It is not my friend! No matter what the science behind it all says, I still feel that in some way I could have prevented these diseases I have been dealt. Then, to take it a step further, when I give myself some slack and say, "you did everything you could...", the guilty voice comes in and says, "yeah, but you could be handling this situation better..." I realize the irrationality of it all, but these are emotions. You cannot control your emotions.
In the past week or so, I have found myself allowing the guilty voice to get the better of me. My son wakes up in the middle of the night pretty consistently. He is nearly 6 years old at this point and has slept through the night since he was a year old. The struggle with this new pattern has been so mind boggling. On his way to school today, walking with his dad as he always does, the truth comes out. He cannot sleep because he is worried about me. How do you react to that?
My husband and I try our best to be age appropriately honest with him about my situation. It would be terrible for a kid at school to tell him something or for him to see something on TV that suddenly clicks when we haven't been upfront with him about the seriousness of the matter. We reassure him that we are working together everyday to make Momma better. The doctors are really smart and they have all the tools to make sure Momma will be around for a very long time. We tell him he has nothing to worry about. We also get him involved by explaining to him that his most important job is school. He needs to work really hard in school. That is his job. Everybody has a job, and when we all do our job, we can make it through anything. Unfortunately he is not my only source of guilt.
I look at my husband and the tired in his eyes. He did not walk into this marriage knowing he was going to have such a huge responsibility. He came into this marriage with an educated, full time working mom who ran 30 plus miles a week and always kept the house tidy. He came into this marriage with an active partner. He now has a whole different life. I thank God everyday that he is here by my side. He is an amazing man that deserves great honor and credit for all that he does. I just cannot fight the feeling that he would be better off if I hadn't brought this burden on him.
Then we move on to outside influences that effect guilt. Friends, gatherings, church, etc. Sometimes I have pushed so hard throughout the week to get up every morning and be the mom I need to be. School, home, homework, soccer, and not to mention the unexpected's we all deal with on a daily basis. By the time the weekend comes, along with the weekend chores, I am worn out. I barely have the energy to get done the necessities. And yet, I allow the guilt to push me further. Feeling like I need to make an appearance here or there. I need to be here for this person or I cannot miss another event so and so invited me to. The cycle is non stop.
I am here to say, it must stop now. I could not control what happened. I take all the steps every doctor suggests and follow their professional opinions as far as they'll take me. I do my absolute best for my family, friends, and myself. Can I allow myself to feel guilty for unattainable goals? No, absolutely not. And you shouldn't either. Chronic illnesses effect your life for the rest of your life. That in itself is burden enough to carry on your shoulders everyday. Do your part. Do your best. Love fully and live in the present. Listen to your body and heed its warnings. We all need a little break sometime. I am deciding that today I give myself that break.
The people in my life that matter will understand and still be there no matter what, as I would for them. The people who drop like flies, may only have been pests to begin with. Let's celebrate our blessings and forgive ourselves a little more often. Life is good, and so are you.
It is no surprise that the first question in any persons mind when they get a diagnosis is, "Why?" A natural human instinct to sooth ourselves is to try to piece it all together in such a way that it makes sense to our minds. The reality is, however, sometimes there is no rhyme or reason. This, I believe, is where the problem lies. In trying to figure out the "why" behind it all, we end up using ourselves as scapegoats when no other logical explanation can be found.
I have recently been overwhelmed with this emotion of guilt. It is not my friend! No matter what the science behind it all says, I still feel that in some way I could have prevented these diseases I have been dealt. Then, to take it a step further, when I give myself some slack and say, "you did everything you could...", the guilty voice comes in and says, "yeah, but you could be handling this situation better..." I realize the irrationality of it all, but these are emotions. You cannot control your emotions.
In the past week or so, I have found myself allowing the guilty voice to get the better of me. My son wakes up in the middle of the night pretty consistently. He is nearly 6 years old at this point and has slept through the night since he was a year old. The struggle with this new pattern has been so mind boggling. On his way to school today, walking with his dad as he always does, the truth comes out. He cannot sleep because he is worried about me. How do you react to that?
My husband and I try our best to be age appropriately honest with him about my situation. It would be terrible for a kid at school to tell him something or for him to see something on TV that suddenly clicks when we haven't been upfront with him about the seriousness of the matter. We reassure him that we are working together everyday to make Momma better. The doctors are really smart and they have all the tools to make sure Momma will be around for a very long time. We tell him he has nothing to worry about. We also get him involved by explaining to him that his most important job is school. He needs to work really hard in school. That is his job. Everybody has a job, and when we all do our job, we can make it through anything. Unfortunately he is not my only source of guilt.
I look at my husband and the tired in his eyes. He did not walk into this marriage knowing he was going to have such a huge responsibility. He came into this marriage with an educated, full time working mom who ran 30 plus miles a week and always kept the house tidy. He came into this marriage with an active partner. He now has a whole different life. I thank God everyday that he is here by my side. He is an amazing man that deserves great honor and credit for all that he does. I just cannot fight the feeling that he would be better off if I hadn't brought this burden on him.
Then we move on to outside influences that effect guilt. Friends, gatherings, church, etc. Sometimes I have pushed so hard throughout the week to get up every morning and be the mom I need to be. School, home, homework, soccer, and not to mention the unexpected's we all deal with on a daily basis. By the time the weekend comes, along with the weekend chores, I am worn out. I barely have the energy to get done the necessities. And yet, I allow the guilt to push me further. Feeling like I need to make an appearance here or there. I need to be here for this person or I cannot miss another event so and so invited me to. The cycle is non stop.
I am here to say, it must stop now. I could not control what happened. I take all the steps every doctor suggests and follow their professional opinions as far as they'll take me. I do my absolute best for my family, friends, and myself. Can I allow myself to feel guilty for unattainable goals? No, absolutely not. And you shouldn't either. Chronic illnesses effect your life for the rest of your life. That in itself is burden enough to carry on your shoulders everyday. Do your part. Do your best. Love fully and live in the present. Listen to your body and heed its warnings. We all need a little break sometime. I am deciding that today I give myself that break.
The people in my life that matter will understand and still be there no matter what, as I would for them. The people who drop like flies, may only have been pests to begin with. Let's celebrate our blessings and forgive ourselves a little more often. Life is good, and so are you.
Thursday, September 15, 2011
Taking control
I have amazed myself these past few days. I have been dealing with these illnesses and challenges for several years. They continue, it seems, to spiral and multiply. I am always left with a feeling of "What else?" and "How am I going to manage this one?"
Moving back from the city my husband and I went to college in was the best decision we could make. So many more answers have surfaced through small town doctors. The slow paced lifestyle decreases daily stress. The cost of living is definitely much more affordable which is crucial for a family dealing with long term medical needs. The only downfall is a lack of resources, especially when it comes to food options.
I have played with the idea of trying to find a way to make purchasing food more affordable and convenient in a place with very little resources. I have several different specialty doctors that I see about every 90 days, so I usually take the opportunity of traveling to their larger cities to purchase what I need. Although we have a local health food store, prices are high and options are limited. Since starting this blog, I have spent much more time on the computer and, with the help of some tech savvy family members, I am learning how to navigate technology a little better.
Let's be honest. I grew up in a generation where computers were brought into the home for personal use. The world wide web was introduced and online media and communications have exploded. My love for the outdoors, sports, and anything active has steered me away from the computer (or any technology for that matter). I suppose that is more of an excuse. It is probably more a matter of my own unwillingness to join the crowd. Either way, I am easing into it and obviously getting sucked in.
After months, if not years, of talking with friends and family about finding better options I came up with a plan several months ago to try to recruit businesses to come to our area. The idea stayed in my head all this time. Today, with the motivation of a dear family friend who also suffers from Celiac disease and lives in south east New Mexico not too far from myself, I decided to take the bull by the horns. I logged onto my favorite two health food stores sights (Whole Foods Market and Trader Joe's). Conveniently enough, they have "location request" tabs on their sites. I took complete advantage of those as well as sharing the idea through social media to generate a larger response. I also went to our city's website and submitted a "citizen's request for improvement". Who knew they had all these wonderful opportunities to speak your mind?
Granted, I imagine these may go unnoticed for some time. I am hoping that my local community will jump on my bandwagon to pressure these companies to explore our area. On another surprising note, the city contacted me within hours of my request. With a few questions and some suggestions, we ended with the decision that this idea would be taken to board members and city developers to see what can be done. Again, I realize this may never go anywhere, but I am pleasantly surprised by the quick response. People actually do care out there.
No matter how bitter the world seems these days, people are still humans and ultimately want to make life better for themselves. In doing that, we might just make the world a better place for our neighbor as well.
I am proud of myself for actually stepping out of my own comfort zone. I started a blog and began sharing some very intimate details of my life with the world hoping to find a connection and better lives. I have learned so much in the past few days about marketing, research, communication, as well as my own diseases......and technology too, I guess. Now, I have finally taken control of something that has had control of me for so long. I feel empowered and more motivated everyday. I am meeting new people everyday that are teaching me things about myself I never thought possible. I pray this journey continues because it is becoming a lifesaver.
Thank you God, all of my supportive friends and family, and the strangers enlightening me everyday. Everyone of you is making a difference.
Moving back from the city my husband and I went to college in was the best decision we could make. So many more answers have surfaced through small town doctors. The slow paced lifestyle decreases daily stress. The cost of living is definitely much more affordable which is crucial for a family dealing with long term medical needs. The only downfall is a lack of resources, especially when it comes to food options.
I have played with the idea of trying to find a way to make purchasing food more affordable and convenient in a place with very little resources. I have several different specialty doctors that I see about every 90 days, so I usually take the opportunity of traveling to their larger cities to purchase what I need. Although we have a local health food store, prices are high and options are limited. Since starting this blog, I have spent much more time on the computer and, with the help of some tech savvy family members, I am learning how to navigate technology a little better.
Let's be honest. I grew up in a generation where computers were brought into the home for personal use. The world wide web was introduced and online media and communications have exploded. My love for the outdoors, sports, and anything active has steered me away from the computer (or any technology for that matter). I suppose that is more of an excuse. It is probably more a matter of my own unwillingness to join the crowd. Either way, I am easing into it and obviously getting sucked in.
After months, if not years, of talking with friends and family about finding better options I came up with a plan several months ago to try to recruit businesses to come to our area. The idea stayed in my head all this time. Today, with the motivation of a dear family friend who also suffers from Celiac disease and lives in south east New Mexico not too far from myself, I decided to take the bull by the horns. I logged onto my favorite two health food stores sights (Whole Foods Market and Trader Joe's). Conveniently enough, they have "location request" tabs on their sites. I took complete advantage of those as well as sharing the idea through social media to generate a larger response. I also went to our city's website and submitted a "citizen's request for improvement". Who knew they had all these wonderful opportunities to speak your mind?
Granted, I imagine these may go unnoticed for some time. I am hoping that my local community will jump on my bandwagon to pressure these companies to explore our area. On another surprising note, the city contacted me within hours of my request. With a few questions and some suggestions, we ended with the decision that this idea would be taken to board members and city developers to see what can be done. Again, I realize this may never go anywhere, but I am pleasantly surprised by the quick response. People actually do care out there.
No matter how bitter the world seems these days, people are still humans and ultimately want to make life better for themselves. In doing that, we might just make the world a better place for our neighbor as well.
I am proud of myself for actually stepping out of my own comfort zone. I started a blog and began sharing some very intimate details of my life with the world hoping to find a connection and better lives. I have learned so much in the past few days about marketing, research, communication, as well as my own diseases......and technology too, I guess. Now, I have finally taken control of something that has had control of me for so long. I feel empowered and more motivated everyday. I am meeting new people everyday that are teaching me things about myself I never thought possible. I pray this journey continues because it is becoming a lifesaver.
Thank you God, all of my supportive friends and family, and the strangers enlightening me everyday. Everyone of you is making a difference.
Wednesday, September 14, 2011
Meditation
As I lay in bed last night thinking about the day ahead of me, I analyzed my body to determine whether or not I should go for a morning run or do some yoga. I have been so tired and weak lately it is a nightly internal argument as I am setting the alarm for the next morning. I have been an avid runner for over a decade. In the small town that I live I have forged a route that I love. It happens to be along many school zones so I have to get up early enough to beat the school traffic if it is going to be an enjoyable run. It is something my body yearns for and I feel I cannot let it go.
I have been told by numerous doctors that I need to stop running. I have been told that it is too strenuous for such a fragile body. I have also been told I will not have the strength to continue running. Exercise is such a crucial part of my life, I just cannot imagine not doing it. A quote from a pharmaceutical commercial comes to mind, "a body in motion stays in motion. a body at rest stays at rest." Doctors have suggested several different alternatives such as swimming, biking, walking, elliptical, and yoga. I have tried them all. Nothing seems to give me the same good feeling at the end. I suppose that's where we get the phrase "runner's high". If this is what I am going to be addicted to, I figure it is better than the alternative.
A common comment I get, that honestly cuts me to my core, is "Well, I see you out running so you must not be too sick." As I am laying in bed thinking about this day all these thoughts go in and out as they do every night. Guilt, I think, is a constant in someones life with chronic health issues. "Am I doing more harm than good? What will I do when the day comes that I have to stop? Will I be able to handle it? How can I feel so awful and still get out there and do this everyday?" I generally fall asleep to these thoughts with a sigh of relief telling myself, "I will cross that bridge when I get to it. I do not care if it is harming me, the mental impact is so much greater than anything else. Allow yourself some slack."
I will admit that in the past few years I have listened to my body a great deal more than I used to. I used to run anywhere from 5 to 8 miles a day no matter how I felt. I was in denial. I did not belief I could be as sick as it seemed I was. I ate healthy, I was able to run these amazing runs, there is no way something is wrong with me. I lived at an altitude of a mile high and pushed a running stroller with my baby for 7 miles a day when I first started having seizures. I was incorrigible.
I remember sitting at the Mayo Clinic back in 2008. My mom and dad were there with me. We were in the waiting room with several other people awaiting my initial evaluation. Trying to foresee what they would say or what was wrong, my parents and I tossed ideas back and forth trying to pass the time. I remember my dad asking, "What if they tell you to stop running?" I looked him straight in the eyes and said, "They will have to cut off my legs. I won't do it!" End of conversation.
I guess I feel this all needs some explanation. As you read this I can imagine the judgements running through your head. It must sound like I am addicted to exercise. It must sound like I have a mental disorder like exercise anorexia. The truth of the matter is, to me it is not about weight or body image. It started out that way many years back, but quickly turned into something I needed. I am not doing myself justice by continually saying I need this so I will take it a step further.
The doctor who sat me down and talked me into applying for disability and accepting the magnitude of the cards I had been dealt was of middle eastern decent. She immediately saw my Type A personality and over achiever mode of operation. This is not a good way to be when so much of your life is out of your control. She encouraged me to slow or stop the running every time I saw her. She encouraged me to look into meditation. Finding a balance. That inner peace. Connecting to your core, getting centered. I would listen, smile, and nod then walk out of her office thinking "How the heck do you do that?" I'd shrug it off.
As time rolled on, limitations got more dramatic and things that I loved were getting taken away piece by piece. The one thing I have clung to is running. Of course, throughout this all there is a lot of self awareness. There is a lot of acceptance that needs to be made. This includes a lot of analyzing and internalizing. Just laying it all out and finding a way to piece it back together with these new pieces. Changing, what I thought, was the person I would be in every aspect of my life. Taking in the comments, suggestions, opinions, recommendations, and judgements from professionals to family to friends. It all has to be organized in a way that I can accept myself and find what works best for me and my family.
Shortly after I started running so many years ago, it changed from something to improve my appearance to something I thoroughly enjoyed. Not until these last few years have I been able to explain it. With these recent digestive issues it has only become more crucial. Running is a release for me. It is my time of meditation (that I resisted so much from that wonderful doctor). I spend my runs talking to God. Asking Him for help, guidance, and strength. I pray for friends and family members in need. Anything and everything. My morning runs are my one hour a day for myself. I am alone with my thoughts. It is everything I once resisted, yet it was always there even when I didn't realize it.
More recently it has become about other things. Because of the digestive issues we are trying to work out, I run to gain an appetite. I am not sure the science behind it all. I have a very difficult time getting myself to eat, but when I run hunger creeps in to help. I also feel it moves things along. On days I do not run, my stomach issues seem so much more difficult. I feel like I have rocks sitting in my gut after I eat which leads me to not wanting to add to the pile with 2 additional meals that day. This may be completely mental or it may have some substance. That's for the professionals to figure out.
So, as I lay there last night with this conversation running through my head, that internal battle, I decided, "Go for it." When the day comes that it is life or death I will sit down and make the critical decision to stop running. Until that day comes, I will use these daily runs to give myself the inner strength I need to continue. I will say that I mix in some yoga to give my body a rest, especially on days where I am just utterly too weak. I will not allow the comments from other or their judgements take anything away from me. I am dealing with some difficult disease. Exerting myself too much can be harmful. The way I see it, mental health is just as crucial as physical health. The fact that running contributes to both is just a bonus. I will fight everyday for the strength to run. It is my freedom.
I am encouraged and inspired now. That light bulb going off, giving me that clear understanding about the connection between meditation and running. I want to look into meditation in a little more detail. I would like to learn techniques and educate myself on the background and history of this practice. This blog is allowing me to put my thoughts down and revisit them. It is getting me to a place where I can center myself and find out what really inspires me and what I am really passionate about. Everything I set out to do is falling into place and giving purpose to my life again.....without the 5 year plan I had engraved in my mind at the start of college. Life is ever changing. Roll with the punches.
I have been told by numerous doctors that I need to stop running. I have been told that it is too strenuous for such a fragile body. I have also been told I will not have the strength to continue running. Exercise is such a crucial part of my life, I just cannot imagine not doing it. A quote from a pharmaceutical commercial comes to mind, "a body in motion stays in motion. a body at rest stays at rest." Doctors have suggested several different alternatives such as swimming, biking, walking, elliptical, and yoga. I have tried them all. Nothing seems to give me the same good feeling at the end. I suppose that's where we get the phrase "runner's high". If this is what I am going to be addicted to, I figure it is better than the alternative.
A common comment I get, that honestly cuts me to my core, is "Well, I see you out running so you must not be too sick." As I am laying in bed thinking about this day all these thoughts go in and out as they do every night. Guilt, I think, is a constant in someones life with chronic health issues. "Am I doing more harm than good? What will I do when the day comes that I have to stop? Will I be able to handle it? How can I feel so awful and still get out there and do this everyday?" I generally fall asleep to these thoughts with a sigh of relief telling myself, "I will cross that bridge when I get to it. I do not care if it is harming me, the mental impact is so much greater than anything else. Allow yourself some slack."
I will admit that in the past few years I have listened to my body a great deal more than I used to. I used to run anywhere from 5 to 8 miles a day no matter how I felt. I was in denial. I did not belief I could be as sick as it seemed I was. I ate healthy, I was able to run these amazing runs, there is no way something is wrong with me. I lived at an altitude of a mile high and pushed a running stroller with my baby for 7 miles a day when I first started having seizures. I was incorrigible.
I remember sitting at the Mayo Clinic back in 2008. My mom and dad were there with me. We were in the waiting room with several other people awaiting my initial evaluation. Trying to foresee what they would say or what was wrong, my parents and I tossed ideas back and forth trying to pass the time. I remember my dad asking, "What if they tell you to stop running?" I looked him straight in the eyes and said, "They will have to cut off my legs. I won't do it!" End of conversation.
I guess I feel this all needs some explanation. As you read this I can imagine the judgements running through your head. It must sound like I am addicted to exercise. It must sound like I have a mental disorder like exercise anorexia. The truth of the matter is, to me it is not about weight or body image. It started out that way many years back, but quickly turned into something I needed. I am not doing myself justice by continually saying I need this so I will take it a step further.
The doctor who sat me down and talked me into applying for disability and accepting the magnitude of the cards I had been dealt was of middle eastern decent. She immediately saw my Type A personality and over achiever mode of operation. This is not a good way to be when so much of your life is out of your control. She encouraged me to slow or stop the running every time I saw her. She encouraged me to look into meditation. Finding a balance. That inner peace. Connecting to your core, getting centered. I would listen, smile, and nod then walk out of her office thinking "How the heck do you do that?" I'd shrug it off.
As time rolled on, limitations got more dramatic and things that I loved were getting taken away piece by piece. The one thing I have clung to is running. Of course, throughout this all there is a lot of self awareness. There is a lot of acceptance that needs to be made. This includes a lot of analyzing and internalizing. Just laying it all out and finding a way to piece it back together with these new pieces. Changing, what I thought, was the person I would be in every aspect of my life. Taking in the comments, suggestions, opinions, recommendations, and judgements from professionals to family to friends. It all has to be organized in a way that I can accept myself and find what works best for me and my family.
Shortly after I started running so many years ago, it changed from something to improve my appearance to something I thoroughly enjoyed. Not until these last few years have I been able to explain it. With these recent digestive issues it has only become more crucial. Running is a release for me. It is my time of meditation (that I resisted so much from that wonderful doctor). I spend my runs talking to God. Asking Him for help, guidance, and strength. I pray for friends and family members in need. Anything and everything. My morning runs are my one hour a day for myself. I am alone with my thoughts. It is everything I once resisted, yet it was always there even when I didn't realize it.
More recently it has become about other things. Because of the digestive issues we are trying to work out, I run to gain an appetite. I am not sure the science behind it all. I have a very difficult time getting myself to eat, but when I run hunger creeps in to help. I also feel it moves things along. On days I do not run, my stomach issues seem so much more difficult. I feel like I have rocks sitting in my gut after I eat which leads me to not wanting to add to the pile with 2 additional meals that day. This may be completely mental or it may have some substance. That's for the professionals to figure out.
So, as I lay there last night with this conversation running through my head, that internal battle, I decided, "Go for it." When the day comes that it is life or death I will sit down and make the critical decision to stop running. Until that day comes, I will use these daily runs to give myself the inner strength I need to continue. I will say that I mix in some yoga to give my body a rest, especially on days where I am just utterly too weak. I will not allow the comments from other or their judgements take anything away from me. I am dealing with some difficult disease. Exerting myself too much can be harmful. The way I see it, mental health is just as crucial as physical health. The fact that running contributes to both is just a bonus. I will fight everyday for the strength to run. It is my freedom.
I am encouraged and inspired now. That light bulb going off, giving me that clear understanding about the connection between meditation and running. I want to look into meditation in a little more detail. I would like to learn techniques and educate myself on the background and history of this practice. This blog is allowing me to put my thoughts down and revisit them. It is getting me to a place where I can center myself and find out what really inspires me and what I am really passionate about. Everything I set out to do is falling into place and giving purpose to my life again.....without the 5 year plan I had engraved in my mind at the start of college. Life is ever changing. Roll with the punches.
Tuesday, September 13, 2011
Moderation and Inspiration
I promised myself I wouldn't post everyday because I didn't want to become a slave to the computer. There has just been so much interesting information being thrown out there, I have to lay it out.
As I mentioned in previous posts, my son has been diagnosed with A.D.H.D. recently. Whether or not this clearly has anything to do with that, I am not sure, but I thought it was important to discuss. A study was published Monday suggesting that Spongebob Squarepants, a popular children's cartoon, may have negative effects on preschoolers ability to stay on task. From what I understand, researchers took a very small sample group of 4 year olds with similar backgrounds and submitted them to nine minutes of either Spongebob, a PBS cartoon, or coloring and drawing. Immediately after they performed a psychological tests to measure their ability to stay in task. The Spongebob spectators scored significantly lower than the other two groups. The reasoning behind the outcome, they said, is due to the rapid pace of the show as well as it's fantastic characters.
I have to admit, my son does enjoy watching Spongebob Squarepants. He particularly loves the "fantastic" characters. I personally do not like the show because I feel some of the story lines are inappropriate for children, and I do not like the bantar back and forth between Spongebob and Squidward. I feel it is a little too mean spirited for kids. As far as the attention span aspect goes, I do not feel there is a significant impact. I do not agree with the idea that it is as important to monitor what type of television your children watch as well as what amount of time they spend in front of the television. Lessons are taught in the home not through the television.
I do monitor what my son watches at my own home. I am not too concerned with the amount of time he spends in front of the television. My whole objective is to raise a well rounded, productive citizen. Although I avoid shows such as Spongebob in our own home due to my own personally feeling and opinions on the matter, I cannot control my son no matter where he is. I do my best to educate him about respect, appropriate behavior, kindness, and always putting forth your best. I have him in activities like soccer, basketball, and tee ball. He attends church. We do family activities and games. The majority of his time, even as a preschooler was not spent in front of the TV. I think that is what we all need to take away from this.
Television is not such an important aspect in people's lives that we need to start researching it they way we do food, alcohol, or drugs. The reality of it is, television is a part of life. It is everywhere from your doctor's office waiting room to the line at the bank. It is not the evil here. The evil is the way it is used. Moderation is the key to everything in life from exercise and healthy eating to television and video games.
Speaking of television, I was watching Jillian Michaels recently. She happens to be one of my idols. Every time I read anything or see anything about her she speaks to me more and more. She was talking about how pleased she is to be a co host on the daytime talk show The Doctors. She says she feels blessed and honored to be given this vehicle 5 days a week to better peoples lives by educating them about health and fitness. It gives her purpose in her life. That only inspires me more.
I had to come to a realization in my life when I was given so many limitations, and that was "What really makes you happy? What do you really enjoy?" I had to answer these questions to come to a level of acceptance about my new life. No longer would I be able to follow my dreams of becoming a psychologists, or a nurse, or a diabetic educator, or a nutritionist. The education and knowledge that I gained studying for those careers is not lost. I use it in my everyday life, and with a life like mine they sure have come in handy. The answer to those questions was sports. Everything about sports just speaks to me, and to advance it even further, the exercise improves your health. The nutritional knowledge only builds on that idea.
I watch Jillian Michaels on The Biggest Loser every year and she continues to motivate me to stay as healthy as I can. No excuses. I would love to do what she does. I would love to become a personal trainer. I know that is an impossibility at this point in my life. I do hope to inspire people to take a good look at their lives, and make improvements. Do not waste the health you have now on a few sodas and a lazy afternoon. Be grateful you have your health and cherish and respect it.
No matter where the road God has set out for me goes, I plan to follow it. I will continue to educate myself and improve myself in hopes that someday I will feel blessed and honored to help people the way Jillian explained she felt.
Again, I urge you to leave comments and ideas. This should be an open conversation. How do we improve ourselves and learn if we never look at things from another's perspective?
As I mentioned in previous posts, my son has been diagnosed with A.D.H.D. recently. Whether or not this clearly has anything to do with that, I am not sure, but I thought it was important to discuss. A study was published Monday suggesting that Spongebob Squarepants, a popular children's cartoon, may have negative effects on preschoolers ability to stay on task. From what I understand, researchers took a very small sample group of 4 year olds with similar backgrounds and submitted them to nine minutes of either Spongebob, a PBS cartoon, or coloring and drawing. Immediately after they performed a psychological tests to measure their ability to stay in task. The Spongebob spectators scored significantly lower than the other two groups. The reasoning behind the outcome, they said, is due to the rapid pace of the show as well as it's fantastic characters.
I have to admit, my son does enjoy watching Spongebob Squarepants. He particularly loves the "fantastic" characters. I personally do not like the show because I feel some of the story lines are inappropriate for children, and I do not like the bantar back and forth between Spongebob and Squidward. I feel it is a little too mean spirited for kids. As far as the attention span aspect goes, I do not feel there is a significant impact. I do not agree with the idea that it is as important to monitor what type of television your children watch as well as what amount of time they spend in front of the television. Lessons are taught in the home not through the television.
I do monitor what my son watches at my own home. I am not too concerned with the amount of time he spends in front of the television. My whole objective is to raise a well rounded, productive citizen. Although I avoid shows such as Spongebob in our own home due to my own personally feeling and opinions on the matter, I cannot control my son no matter where he is. I do my best to educate him about respect, appropriate behavior, kindness, and always putting forth your best. I have him in activities like soccer, basketball, and tee ball. He attends church. We do family activities and games. The majority of his time, even as a preschooler was not spent in front of the TV. I think that is what we all need to take away from this.
Television is not such an important aspect in people's lives that we need to start researching it they way we do food, alcohol, or drugs. The reality of it is, television is a part of life. It is everywhere from your doctor's office waiting room to the line at the bank. It is not the evil here. The evil is the way it is used. Moderation is the key to everything in life from exercise and healthy eating to television and video games.
Speaking of television, I was watching Jillian Michaels recently. She happens to be one of my idols. Every time I read anything or see anything about her she speaks to me more and more. She was talking about how pleased she is to be a co host on the daytime talk show The Doctors. She says she feels blessed and honored to be given this vehicle 5 days a week to better peoples lives by educating them about health and fitness. It gives her purpose in her life. That only inspires me more.
I had to come to a realization in my life when I was given so many limitations, and that was "What really makes you happy? What do you really enjoy?" I had to answer these questions to come to a level of acceptance about my new life. No longer would I be able to follow my dreams of becoming a psychologists, or a nurse, or a diabetic educator, or a nutritionist. The education and knowledge that I gained studying for those careers is not lost. I use it in my everyday life, and with a life like mine they sure have come in handy. The answer to those questions was sports. Everything about sports just speaks to me, and to advance it even further, the exercise improves your health. The nutritional knowledge only builds on that idea.
I watch Jillian Michaels on The Biggest Loser every year and she continues to motivate me to stay as healthy as I can. No excuses. I would love to do what she does. I would love to become a personal trainer. I know that is an impossibility at this point in my life. I do hope to inspire people to take a good look at their lives, and make improvements. Do not waste the health you have now on a few sodas and a lazy afternoon. Be grateful you have your health and cherish and respect it.
No matter where the road God has set out for me goes, I plan to follow it. I will continue to educate myself and improve myself in hopes that someday I will feel blessed and honored to help people the way Jillian explained she felt.
Again, I urge you to leave comments and ideas. This should be an open conversation. How do we improve ourselves and learn if we never look at things from another's perspective?
Monday, September 12, 2011
Silver Linings Outshine
It's Monday and all I can think of today is all the wonderful things that happened this weekend. We had family time, soccer games, football, and church. I could not think of a better way to spend my time.
Friday afternoon I went to pick up my son from school and that is where the smiles began. His teacher left a note for me in his folder. It just happened to be a "good" note. "Good" notes are only sent home when exceptional things happen. This is very special because we just had a full evaluation done and learned he has A.D.H.D. as well as anxiety. Sadly, his anxiety is due to seeing his mother chronically ill. My husband and I decided for our family that medication will be a last resort. Luckily, our son has a very patient and understanding teacher as well as a delightful and eager personality himself. His good behavior has just been increasing everyday and we are so proud.
Saturday morning we woke early for a double header in 6 and under soccer. I will have to admit, I have never been a soccer fan or player. The game is totally new to me. I am now officially addicted. Not only was the game very exciting and fast paced, the kids are ridiculously adorable. They play 3 on 3 so I can give you no details about positions or anything. Just seeing these kids run with such conviction and determination, smiles on their face the whole time, was pure joy. I am proud to say my 5 year old son made his first goal in his very first game. It did, however, count for the other team, but in his words, "at least I made a goal". All I can say to that is, he is absolutely right! Good job.
Saturday night I sat with my husband in our kitchen talking. We talked for hours. I love those nights. I was telling him how heavenly it would be if I could wake up just one day and be symptom free. Just one day would be amazing. I would be so grateful. Our nightly talks usually include our dreams and fantasies, what ifs, and somedays so this was just a typical night staring at the stars. With a deep sigh we said goodnight and headed off to bed. I fell asleep thinking about my wishes.
With freshly uploaded music on my ipod, I set out for my morning run. I was so glad to get through the entire run without getting sick. I did have to rush to the bathroom as soon as I got home, but that is still an accomplishment. Thereafter I did not have a stomach ache. I usually do not vocalize things that like that right away in fears of jinxing it. After a shower, laundry, cleaning, cooking, and of course NFL football I told my husband my wish had come true. I went through nearly an entire Sunday with little to no symptoms. It was something I could have never expected and am so grateful. Unfortunately, the Dallas Cowboys choked again so my bubble had a little leak, but beggars can't be choosers.
Sunday was also the tenth anniversary of the terrible September 11, 2001. With all the raw emotion floating around it was hard not to shed a tear. I am thankful that I did not lose anybody close to me that day. I am thankful that although our lives have changed, we are still very blessed to live freely. I realized my five year old will look at this day in history books the way I see Pearl Harbor Day. I will do my best to teach him what the world was like before September 11th, and instill in him an open heart.
Sunday was also my son's first day of catechism. I am not Catholic, but my husband's family is. It is very important for him to raised in the church. I am a faithful, religious person. I was raised Presbyterian, and that's where I am most comfortable. I believe as long as you learn how to be a good person, it does not matter what label you put on it. I also think it is important for him to see that there is a higher power in control so he does not need to worry. He absolutely loved it. After only an hour's time he came home with so much information. The smile on his face was unforgettable.
Today is a rough one. I am exhausted, weak, and fogging. Body aches today are constant. I also have a headache that will not quit. No matter what the day has to offer, I always try to find the silver lining. I have only a slight ache in my belly and have not had to rush to the bathroom once today. I have been hungry and able to eat without additional medication. There is no soccer practice, church activities, or prior engagements so I get to relax and enjoy Monday Night Football.
The silver linings outshine the rain falling.
Friday afternoon I went to pick up my son from school and that is where the smiles began. His teacher left a note for me in his folder. It just happened to be a "good" note. "Good" notes are only sent home when exceptional things happen. This is very special because we just had a full evaluation done and learned he has A.D.H.D. as well as anxiety. Sadly, his anxiety is due to seeing his mother chronically ill. My husband and I decided for our family that medication will be a last resort. Luckily, our son has a very patient and understanding teacher as well as a delightful and eager personality himself. His good behavior has just been increasing everyday and we are so proud.
Saturday morning we woke early for a double header in 6 and under soccer. I will have to admit, I have never been a soccer fan or player. The game is totally new to me. I am now officially addicted. Not only was the game very exciting and fast paced, the kids are ridiculously adorable. They play 3 on 3 so I can give you no details about positions or anything. Just seeing these kids run with such conviction and determination, smiles on their face the whole time, was pure joy. I am proud to say my 5 year old son made his first goal in his very first game. It did, however, count for the other team, but in his words, "at least I made a goal". All I can say to that is, he is absolutely right! Good job.
Saturday night I sat with my husband in our kitchen talking. We talked for hours. I love those nights. I was telling him how heavenly it would be if I could wake up just one day and be symptom free. Just one day would be amazing. I would be so grateful. Our nightly talks usually include our dreams and fantasies, what ifs, and somedays so this was just a typical night staring at the stars. With a deep sigh we said goodnight and headed off to bed. I fell asleep thinking about my wishes.
With freshly uploaded music on my ipod, I set out for my morning run. I was so glad to get through the entire run without getting sick. I did have to rush to the bathroom as soon as I got home, but that is still an accomplishment. Thereafter I did not have a stomach ache. I usually do not vocalize things that like that right away in fears of jinxing it. After a shower, laundry, cleaning, cooking, and of course NFL football I told my husband my wish had come true. I went through nearly an entire Sunday with little to no symptoms. It was something I could have never expected and am so grateful. Unfortunately, the Dallas Cowboys choked again so my bubble had a little leak, but beggars can't be choosers.
Sunday was also the tenth anniversary of the terrible September 11, 2001. With all the raw emotion floating around it was hard not to shed a tear. I am thankful that I did not lose anybody close to me that day. I am thankful that although our lives have changed, we are still very blessed to live freely. I realized my five year old will look at this day in history books the way I see Pearl Harbor Day. I will do my best to teach him what the world was like before September 11th, and instill in him an open heart.
Sunday was also my son's first day of catechism. I am not Catholic, but my husband's family is. It is very important for him to raised in the church. I am a faithful, religious person. I was raised Presbyterian, and that's where I am most comfortable. I believe as long as you learn how to be a good person, it does not matter what label you put on it. I also think it is important for him to see that there is a higher power in control so he does not need to worry. He absolutely loved it. After only an hour's time he came home with so much information. The smile on his face was unforgettable.
Today is a rough one. I am exhausted, weak, and fogging. Body aches today are constant. I also have a headache that will not quit. No matter what the day has to offer, I always try to find the silver lining. I have only a slight ache in my belly and have not had to rush to the bathroom once today. I have been hungry and able to eat without additional medication. There is no soccer practice, church activities, or prior engagements so I get to relax and enjoy Monday Night Football.
The silver linings outshine the rain falling.
Subscribe to:
Posts (Atom)