Today I had my second appointment with my new rheumatologist. I like her. Dr. Banerjee. At my last appointment she spent a lot of time with my husband and me. She was very thorough and did a full exam and workup. I could tell the whole time that she had a suspicion about my tentative Undifferentiated Connective Tissue Disease diagnosis. I was hopeful because I hate the harsh medication: plaquenil- an anti-malarial med.
I went through the exam and tests. I accepted her referrals to a dermatologist and physical therapist. My skin is always irritated in one way or another so I would love some relief. The physical therapy I could give or take. It is for joint and muscle pain, but I have seen them before to no avail. My derm appointment is soon. I am ready to feel better with better treatment at the root of the issues.
At the appointment today I got some unsettling news. After going through my medical records/history and reviewing my lab results she does not feel there is any rheumatological disease. GOOD NEWS plus no plaquenil. But......some electrolyte levels we low; sodium and potassium. In addition to my skin irritation, hyperpigmentation, and symptoms mimicking lupus, she strongly feels there is adrenal insufficiency. That is Addison's disease. BAD NEWS.
Doctors have been dancing around this with me for years. It is part of APS Type II. But I am not ready for more tests. She suggested another skin biopsy, this time of the vasculitis on my hands. Last time I had one of the face that proved hyperpigmentation. She also is going to speak to my endocrinologist about further testing. I have been tested before, but there is more they can do.
I lost it. I broke down and cried in her office. Blubbering, telling her I was glad to be relieved of one diagnosis, I am just not ready for more. ....or more tests and waiting. I thought I could have a break for a little while. But I want to feel better.
On a happy note, today is my seven week birthday after surgery. So far, so good.
Showing posts with label Addison's Disease. Show all posts
Showing posts with label Addison's Disease. Show all posts
Wednesday, September 11, 2013
Monday, October 15, 2012
Worry Wart
Over the past several years this giant snowball has seeemed to engulf my life. More recently, particularly the past year or so, this snowball has begun to overpower me. I've brushed it off, pushed it under the rug, beaten it down, ignored it, and tried to look at everyday as a new chance to shake it off for good. To my own dismay, nothing has helped. So now, I turn to you, oh powerful blog..........to air it all out and hope the release will spark change.
I wouldn't normally "air my dirty laundry" for the whole world to see. I am beginning to understand that those of you out there who read my blog are generally people who are important to me and/or going through something so similar, judgement is never an issue......and I suppose if it is, my ignorance is bliss. I don't have enough money for a therapist. A journal is a good outlet and much cheaper. A blog is somewhat of a combination. Although, there may or may not be professionals reading it and offering up advice, a release coupled with the potential of a comment coming in with a perspective I cannot currently see may be more beneficial than thousands spent at a therapist.
I have been to therapists in the past. I have always been told I have good coping skills. I went to school for psychology and was stopped short 11 months before completing my bachelors. (That is a goal I intend to keep and complete when I am able!) I know a little about how the brain and emotions work. Very little; nonetheless, I have a background.
I am a stay at home mom and so I have plenty of time for introspection. I work my rear off with doctor appointments, insurance dealings, volunteering, and being a mom, but it is all done solo. For a while, literally up until today, I thought I suffered from anxiety and depression. I have been on medications for this in the past, but I prefer not to take medication. It was first brought to my attention in my mid teens. I mentioned to a professional that fights, whether physical or verbal, terrify me and always have. I do not have to be involved in the fight. It doesn't even have to have anything to do with me. The outcome could have no effect on my life whatsoever, but when I see or hear people fighting I go into panic mode. That opened a can of worms that could never be contained. I was dubbed a sufferer of social/general anxiety as well as depression based on what my parents told the professionals and placed on medication.
As the years passed, I saw several different doctors and therapists and went on and off several different treatments. Of course, as I got older the anxiety tended to fade a little (maybe it is better to say it got redistributed). The things that would terrify me then no longer terrify me, but I have a whole new set of worries. I never liked the medication. It would take away my symptoms, but it would also numb me out completely. I couldn't feel the good feelings or the bad feelings. I was usually the one who initiated the termination of treatment time and time again.
Once I was sent to the Mayo Clinic and these diagnoses of these chronic, autoimmune diseases started rolling in, I started to notice that a lot of what I complained about as a child that probably motivated my parents to continue to seek help for me was more likely due to these illnesses not a mental or chemical imbalance. Many symptoms have been explained away or treated as each disease has been diagnosed. Along with any chronic illness diagnosis, chemically imbalanced mind or not, comes anxiety and fear. If a major life change is caused by the diagnosis, it can also lead to depression. As I was moving further and further away from the anxiety sufferer and falling into a chronic illness sufferer.........some where along the way the two collided.
I have to be honest, losing so much of (what I thought was) myself sent me into a grieving process. Many people don't realize that making a life change of any nature requires you to grieve the loss of the old life. Often, with illness, the person actually does grieve the loss of themselves on a path to finding their "new self" or new comfort. The last 4 years has been me meandering in and out of depressed states. I'd like to think that I am not a depresssed person because so much of what a clinically depressed person suffers with, I do not. I do not want to take away from or discredit the real sufferers of clinical depression. Just like diabetes or lupus, it is a real medical condition with some serious complications. Clinical depression just does not seem to fit the bill for me.
I avoid telling my medical doctors when I am frustrated or down because they immediately jump to medication. Most anxiety medications are also anti-depressants. When a doctor hears I am having a hard time, their first thought is an anti-depressant. I hate these medications. I will do anything and everything I can to avoid them. The truth is that it is hard. All of it is hard. Life is hard in general, but add these diseases on top and this juggling act becomes incredible. Who in the world could deal with it all without ever feeling overwhelmed?! My guess is, not a single soul. Does that make me weak or "imbalanced" just because I am having a natural reaction? While it is a negative reaction, it is still a natural response. My thinking is, that is healthy. It would be of concern if I floated through these trials without so much as a grimace. So why the need for "help" with these medications? Especially, when the negative feelings are not interfering with my daily life and are not lasting weeks or months on end.
I was out for my morning walk this morning and it hit me like a ton of bricks. It is not depression per se' that is making me feel this way or that I need help with; it is anxiety. I have been explaining to my husband recently that the world is beginning to frighten me. Every where I turn there is a danger or a contaminate or a risk for myself. Every step I take, every move I make, a complication could occur. This is starting to affect my daily life.
Let's go into this a little deeper, if you will. When I was diagnosed with Type I Diabetes I remember the fear. I had Hashimoto's for about 7 years at that point, but symptoms were easily controlled and stability was easily reached. No fear necessary. As I have said before, my own father passed away from complications at the young age of 35. That has never left my mind. Then I was diagnosed with interstitial cystitis. I had to pay attention to everything that went into my mouth as well as how much of it to help stabilize and control the symptoms for each. Sleep, stress, excitement, sex, infection, exercise, etc. affected each. After a few years, I fell into a grove. It didn't stop there, though.
I never felt well. I assumed that living with these illnesses was hard plus my plate was full with school and work and eventually a new son. Then, the seizures started and progressed steadily. I was finally sent to the Mayo Clinic. That was traumatizing because I had only heard of lost cases going to the Mayo Clinic so I thought I was dying at the age of 25. The seizures were treated, but no other explanation found for all my symptoms. I was sent home knowing my journey was not anywhere near being over. Gradually, we started getting answers.
Celiac disease. That means cutting wheat, rye, barley, and oats out of your diet as well as be aware of cross contamination when eating outside of your home. Initially, this terrified me and infuriated me, but I read a lot of books. I educated myself as much as possible to make this change as easy as possible. The unfortunate part about it, I discovered I was one of the lucky one's that feels cross contamination within minutes and the symptoms do not let up for hours if not days depending on the severity and other factors. Imagine digesting broken glass. It is a painful, ripping and tearing sensation combined with cramping, nausea, diarrhea, constipation, etc. Any uncomfortable stomach upset symptom, I get it. I sometimes even get headaches and joint pains along with all of that. When people ask why I don't cheat I ask them "Would you rather eat that piece of bread and wake up with the worst hangover you have ever had or just look at it longingly? I choose the latter".
Undifferentiated Connective Tissue Disease. So much of the treatment for this disease has to do with reducing inflammation. To reduce inflammation they generally use steroids or NSAID's (non-steroidal anti-inflammatory drugs). Steroids raise your blood sugar to dangerous levels. Doctors advise against this treatment in diabetics, unless the benefits out-weigh the risks which is rare. NSAID's are rough on your stomach. Not only that, they thin your blood so they are dangerous for people with ulcers. Celiac disease causes damage in the small intestine lining, sometimes going all the way through the intestine wall, so NSAID's are not recommended for patients with Celiac disease. It can cause internal bleeding. Our only option was an anti-malaria drug. I do not know the science behind how it works, but somehow it does. In the rare case I suffer a flare up, I dread the steroids necessary. In addition to the threat of an anti-inflammatory drug, steroids leave a patient more susceptible to infection (which for myself, the danger is already grave), can cause bone loss (which for myself is already a concern due to malabsorption), and can trick the adrenal glands into thinking they no longer need to work which is a disease called Addison's. My doctors have been on high alert for Addison's since 2009 based on symptoms and the progression of the other illnesses. All of which seems like a ticking time bomb to me.
In the fall of 2011 I was finally seen by a gastroenterologist for all the stomache issues I had complained about for years. Once they Celiac disease was diagnosed and treated then found to be stable based on blood tests, there was no explanation for my continuing symptoms on a daily basis. I was literally not digesting food or absorbing it. I spent the majority of my time for many months in bed, in pain, and very weak. Over this past year it has been discovered slowly that I have pernicious anemia, chronic atrophic gastritis, colitis, proctitis, and lastly gastroparesis. In layman's terms that means my immune system is eating away at the lining of my stomach causing ulcers and malabsorption. My stomach produces no acid which is as bad as having too much acid. This causes messages to get lost so my pancreas does not produce digestive enzymes. The undigested or imporperly digested food then tears up my colon. There is some immune reaction in the colon as well, but no definitive terms other than those I previously stated. As you can imagine, this adds a whole other level to the Jenga game we have going on here.
Food is a source of contention for me. I am a Type I Diabetic on an insulin pump (plus I am human) so food is a necessity! Due to the Celiac disease and the diabetes my options are pretty limited. Add to that the digestive issues and we have to cut out even more. Proteins and fats are the hardest things to process and fiber is too bulky. I am limited to soft foods that are easy to digest, often liquids. I have to find the things with the highest nutrtional value in the smallest package to insure I am getting everything I need. Almost like getting gastric bypass without the gastric bypass. Plus, I had to stop running because it was too much for my body and my digestive system. I turned to alternating walking my dogs and yoga. Running was my passion. And still, it didn't stop there.
I was sent to an immunologist because it was becoming apparent that my immune system was very confused about its job description. At this point everything but the seizures were being caused by an autoimmune response. Plus, I had the rare disseminated histoplasmosis infection in 2009. The immunologist diagnosed my Autoimmune Polyendocrine Syndrome Type II based on blood tests and symptoms and history. He also discovered several allergies. Everything from cats, mold, and pecan to grass, mulberry trees, and cedar. They started me on allergy shots shortly thereafter, but warned the shots are only to help strengthen the body but they do not eliminate the threat of the allergen. I was prescribed an epipen and told to avoid my allergens as much as possible because my immune system is in such high alert all the time.
At that point, I started feeling like the girl in the bubble. It was explained to me that as long as my immune system is in attack mode, it will continue to do just that. It obviously is confused as to what is foreign and what is not so the idea is to avoid as much of the dangers that we know about as possible to try to prevent further progression of APS Type II. By the spring, I started to fall into a grove and by early to mid summer I hit stability, like many of my doctors had been hoping for across the board for years.
Like anybody else in this world, I am not immune to everyday struggles, trials, and tribulation. I had my own set of personal mishaps over the summer and into this fall. These more recent neurological episodes are our new mystery to solve. As I wait for these appointments to come and wonder what the outcome will be. I wonder if we will get any answers or just more questions. I wonder if relief for my headaches and disorientation will come soon.
Last week I was washing dishes and a glass began to fall. I went to catch it before it fell into the stainless steel sink, but my reaction time was not fast enough. I ended up tearing up my ring finger on my left hand. I had to go get it treated at the Emergency Room. I hate the hospital in general, so I was even more irritated that I was there for something as mundane as a glass cut. Trying to not make a big fuss over it, I declined the numbing of the wound before they fixed it up so the whole experience was ridiculously traumatizing. A week later I still am unable to get the finger wet or use it. I usually take my dogs when I walk (we have two), but I cannot hold a leash so I cannot take them. It would just be cruel to take one and not the other. Of course, I cannot do yoga. It's amazing how much you use that one finger. The week has been a little rough. Not to mention how badly it hurts.
So, as I was walking this morning, irritated because I wanted to take my dogs. Irritated because I'd rather do yoga since I have been deprived of it for a week now. Then I thought, "Everything I enjoy gets taken away from me!" As I talked myself down from that negativity, reminding myself the finger injury is only temporary, that's when the light clicked on. I was starting to beat myself up over being depressed when I realized, it is not depression at all. I have the mindset to walk myself out of that hole. I have the mindset to see the positive in all the negative. That's not the mind of a depressed person. Often, clinically depress can not even fathom positive thoughts. They do not see a light at the end of a tunnel or any hope. The anxiety of my fears is crippling me. As that thought came into my head, I started to examine recent events and my reaction to them. I started to notice just how badly the anxiety may be affecting me.
I am low on energy as it is. I prefer to utilize the energy I have for my son and husband. They are my priorities and therefore they deserve my best. My second priority is exercise. Without exercise, digestion, stress, and energy would be huge concerns. Exercise gives me more energy. It loosens my joints and muscles with lubrication and blood flow. It allows me this time to myself to just be me, and that is a huge stress reliever. Without exercise, it seems as if nothing moves inside my belly. Of course, exercise stabilizes blood sugar. All other energy just trickles down. If I have enough energy for fun with friends or family, I'll take advantage. Usually, the latter is what suffers the most.
I have noticed, moreso lately, that I haven't had a whole lot of energy left over for extra fun. I have declined invitations by friends for many things. Partly and mostly due to the fact that I do not feel well enough to get out and do something. Many times it is because I am just zapped completely of energy. While thinking back, I think anxiety has a lot to do with my lower than normal energy lately. I am so consumed by what may attack me next or what may be affected by external factors I cannot control, I have resorted to staying in my bubble as much as possible.
Spontaneity is not in my vocabulary currently. I have so many medications, diet restrictions, and physical limitations that picking up at a moment's notice is nearly impossible. If I do not have food prepared, I cannot just walk in to any grocery store or fast food restaurant and order something. Believe it or not I have been contaminated many times from just ordering a fountain drink. These restaurants are full of contaminating foods. Most packaged food has some sort of preservative or chemical or gluten that I cannot eat. My diet consists mostly all natural, whole foods. That's hard to get on the go. I need to be close to my insulin and testing supplies as well as my emergency medical devices. Although, many of this stuff comes in a portable form, I would need a suitcase rather than a purse to carry it all with me at all times.
The shear totality of what I face on a daily basis and the fact that I am completely competent and aware of it all leads to some overwhelming feelings. I tell my husband from time to time, I wish I didn't understand it all so well or that my awareness will fade a bit. I am already a bit of an introvert. I have always been a bit of a worrier so I guess that would classified as anxious. Pile on all these illnesses, their complications and their treatments, I've got myself in a bit of a beautiful disaster waiting to happen.
I move on to thinking (as my problem-solving, take the bull by the horns mind works) how do I fix this? I do not have money for a therapist nor have I ever felt like they help. I do not want to be classified as depressed considering I am grateful for the gifts in my life and see them on a daily basis. I do not want to burden friends and family with these thoughts. They run through my head continuously. If I were a friend or family member of myself, I would run at the thought of constant complaining or worrying. We all have things to worry about. What makes me different? Different worries, of course, but my worries are no more important than the rest I would assume. How do I tell myself to have faith in God's plan and stop sweating the mall stuff? How do I tell my heart to listen to my head?
And with that, I end this. It is long enough to begin with, but really how much deeper can we get into worrying and anxiety? All the worrying in the world never fixed any crisis. Worrying has never solved any problem. Anxiety seems useful in a dangerous situation, but to have that "fight or flight" response on a constant basis is exhausting and seemingly useless.
I wouldn't normally "air my dirty laundry" for the whole world to see. I am beginning to understand that those of you out there who read my blog are generally people who are important to me and/or going through something so similar, judgement is never an issue......and I suppose if it is, my ignorance is bliss. I don't have enough money for a therapist. A journal is a good outlet and much cheaper. A blog is somewhat of a combination. Although, there may or may not be professionals reading it and offering up advice, a release coupled with the potential of a comment coming in with a perspective I cannot currently see may be more beneficial than thousands spent at a therapist.
I have been to therapists in the past. I have always been told I have good coping skills. I went to school for psychology and was stopped short 11 months before completing my bachelors. (That is a goal I intend to keep and complete when I am able!) I know a little about how the brain and emotions work. Very little; nonetheless, I have a background.
I am a stay at home mom and so I have plenty of time for introspection. I work my rear off with doctor appointments, insurance dealings, volunteering, and being a mom, but it is all done solo. For a while, literally up until today, I thought I suffered from anxiety and depression. I have been on medications for this in the past, but I prefer not to take medication. It was first brought to my attention in my mid teens. I mentioned to a professional that fights, whether physical or verbal, terrify me and always have. I do not have to be involved in the fight. It doesn't even have to have anything to do with me. The outcome could have no effect on my life whatsoever, but when I see or hear people fighting I go into panic mode. That opened a can of worms that could never be contained. I was dubbed a sufferer of social/general anxiety as well as depression based on what my parents told the professionals and placed on medication.
As the years passed, I saw several different doctors and therapists and went on and off several different treatments. Of course, as I got older the anxiety tended to fade a little (maybe it is better to say it got redistributed). The things that would terrify me then no longer terrify me, but I have a whole new set of worries. I never liked the medication. It would take away my symptoms, but it would also numb me out completely. I couldn't feel the good feelings or the bad feelings. I was usually the one who initiated the termination of treatment time and time again.
Once I was sent to the Mayo Clinic and these diagnoses of these chronic, autoimmune diseases started rolling in, I started to notice that a lot of what I complained about as a child that probably motivated my parents to continue to seek help for me was more likely due to these illnesses not a mental or chemical imbalance. Many symptoms have been explained away or treated as each disease has been diagnosed. Along with any chronic illness diagnosis, chemically imbalanced mind or not, comes anxiety and fear. If a major life change is caused by the diagnosis, it can also lead to depression. As I was moving further and further away from the anxiety sufferer and falling into a chronic illness sufferer.........some where along the way the two collided.
I have to be honest, losing so much of (what I thought was) myself sent me into a grieving process. Many people don't realize that making a life change of any nature requires you to grieve the loss of the old life. Often, with illness, the person actually does grieve the loss of themselves on a path to finding their "new self" or new comfort. The last 4 years has been me meandering in and out of depressed states. I'd like to think that I am not a depresssed person because so much of what a clinically depressed person suffers with, I do not. I do not want to take away from or discredit the real sufferers of clinical depression. Just like diabetes or lupus, it is a real medical condition with some serious complications. Clinical depression just does not seem to fit the bill for me.
I avoid telling my medical doctors when I am frustrated or down because they immediately jump to medication. Most anxiety medications are also anti-depressants. When a doctor hears I am having a hard time, their first thought is an anti-depressant. I hate these medications. I will do anything and everything I can to avoid them. The truth is that it is hard. All of it is hard. Life is hard in general, but add these diseases on top and this juggling act becomes incredible. Who in the world could deal with it all without ever feeling overwhelmed?! My guess is, not a single soul. Does that make me weak or "imbalanced" just because I am having a natural reaction? While it is a negative reaction, it is still a natural response. My thinking is, that is healthy. It would be of concern if I floated through these trials without so much as a grimace. So why the need for "help" with these medications? Especially, when the negative feelings are not interfering with my daily life and are not lasting weeks or months on end.
I was out for my morning walk this morning and it hit me like a ton of bricks. It is not depression per se' that is making me feel this way or that I need help with; it is anxiety. I have been explaining to my husband recently that the world is beginning to frighten me. Every where I turn there is a danger or a contaminate or a risk for myself. Every step I take, every move I make, a complication could occur. This is starting to affect my daily life.
Let's go into this a little deeper, if you will. When I was diagnosed with Type I Diabetes I remember the fear. I had Hashimoto's for about 7 years at that point, but symptoms were easily controlled and stability was easily reached. No fear necessary. As I have said before, my own father passed away from complications at the young age of 35. That has never left my mind. Then I was diagnosed with interstitial cystitis. I had to pay attention to everything that went into my mouth as well as how much of it to help stabilize and control the symptoms for each. Sleep, stress, excitement, sex, infection, exercise, etc. affected each. After a few years, I fell into a grove. It didn't stop there, though.
I never felt well. I assumed that living with these illnesses was hard plus my plate was full with school and work and eventually a new son. Then, the seizures started and progressed steadily. I was finally sent to the Mayo Clinic. That was traumatizing because I had only heard of lost cases going to the Mayo Clinic so I thought I was dying at the age of 25. The seizures were treated, but no other explanation found for all my symptoms. I was sent home knowing my journey was not anywhere near being over. Gradually, we started getting answers.
Celiac disease. That means cutting wheat, rye, barley, and oats out of your diet as well as be aware of cross contamination when eating outside of your home. Initially, this terrified me and infuriated me, but I read a lot of books. I educated myself as much as possible to make this change as easy as possible. The unfortunate part about it, I discovered I was one of the lucky one's that feels cross contamination within minutes and the symptoms do not let up for hours if not days depending on the severity and other factors. Imagine digesting broken glass. It is a painful, ripping and tearing sensation combined with cramping, nausea, diarrhea, constipation, etc. Any uncomfortable stomach upset symptom, I get it. I sometimes even get headaches and joint pains along with all of that. When people ask why I don't cheat I ask them "Would you rather eat that piece of bread and wake up with the worst hangover you have ever had or just look at it longingly? I choose the latter".
Undifferentiated Connective Tissue Disease. So much of the treatment for this disease has to do with reducing inflammation. To reduce inflammation they generally use steroids or NSAID's (non-steroidal anti-inflammatory drugs). Steroids raise your blood sugar to dangerous levels. Doctors advise against this treatment in diabetics, unless the benefits out-weigh the risks which is rare. NSAID's are rough on your stomach. Not only that, they thin your blood so they are dangerous for people with ulcers. Celiac disease causes damage in the small intestine lining, sometimes going all the way through the intestine wall, so NSAID's are not recommended for patients with Celiac disease. It can cause internal bleeding. Our only option was an anti-malaria drug. I do not know the science behind how it works, but somehow it does. In the rare case I suffer a flare up, I dread the steroids necessary. In addition to the threat of an anti-inflammatory drug, steroids leave a patient more susceptible to infection (which for myself, the danger is already grave), can cause bone loss (which for myself is already a concern due to malabsorption), and can trick the adrenal glands into thinking they no longer need to work which is a disease called Addison's. My doctors have been on high alert for Addison's since 2009 based on symptoms and the progression of the other illnesses. All of which seems like a ticking time bomb to me.
In the fall of 2011 I was finally seen by a gastroenterologist for all the stomache issues I had complained about for years. Once they Celiac disease was diagnosed and treated then found to be stable based on blood tests, there was no explanation for my continuing symptoms on a daily basis. I was literally not digesting food or absorbing it. I spent the majority of my time for many months in bed, in pain, and very weak. Over this past year it has been discovered slowly that I have pernicious anemia, chronic atrophic gastritis, colitis, proctitis, and lastly gastroparesis. In layman's terms that means my immune system is eating away at the lining of my stomach causing ulcers and malabsorption. My stomach produces no acid which is as bad as having too much acid. This causes messages to get lost so my pancreas does not produce digestive enzymes. The undigested or imporperly digested food then tears up my colon. There is some immune reaction in the colon as well, but no definitive terms other than those I previously stated. As you can imagine, this adds a whole other level to the Jenga game we have going on here.
Food is a source of contention for me. I am a Type I Diabetic on an insulin pump (plus I am human) so food is a necessity! Due to the Celiac disease and the diabetes my options are pretty limited. Add to that the digestive issues and we have to cut out even more. Proteins and fats are the hardest things to process and fiber is too bulky. I am limited to soft foods that are easy to digest, often liquids. I have to find the things with the highest nutrtional value in the smallest package to insure I am getting everything I need. Almost like getting gastric bypass without the gastric bypass. Plus, I had to stop running because it was too much for my body and my digestive system. I turned to alternating walking my dogs and yoga. Running was my passion. And still, it didn't stop there.
I was sent to an immunologist because it was becoming apparent that my immune system was very confused about its job description. At this point everything but the seizures were being caused by an autoimmune response. Plus, I had the rare disseminated histoplasmosis infection in 2009. The immunologist diagnosed my Autoimmune Polyendocrine Syndrome Type II based on blood tests and symptoms and history. He also discovered several allergies. Everything from cats, mold, and pecan to grass, mulberry trees, and cedar. They started me on allergy shots shortly thereafter, but warned the shots are only to help strengthen the body but they do not eliminate the threat of the allergen. I was prescribed an epipen and told to avoid my allergens as much as possible because my immune system is in such high alert all the time.
At that point, I started feeling like the girl in the bubble. It was explained to me that as long as my immune system is in attack mode, it will continue to do just that. It obviously is confused as to what is foreign and what is not so the idea is to avoid as much of the dangers that we know about as possible to try to prevent further progression of APS Type II. By the spring, I started to fall into a grove and by early to mid summer I hit stability, like many of my doctors had been hoping for across the board for years.
Like anybody else in this world, I am not immune to everyday struggles, trials, and tribulation. I had my own set of personal mishaps over the summer and into this fall. These more recent neurological episodes are our new mystery to solve. As I wait for these appointments to come and wonder what the outcome will be. I wonder if we will get any answers or just more questions. I wonder if relief for my headaches and disorientation will come soon.
Last week I was washing dishes and a glass began to fall. I went to catch it before it fell into the stainless steel sink, but my reaction time was not fast enough. I ended up tearing up my ring finger on my left hand. I had to go get it treated at the Emergency Room. I hate the hospital in general, so I was even more irritated that I was there for something as mundane as a glass cut. Trying to not make a big fuss over it, I declined the numbing of the wound before they fixed it up so the whole experience was ridiculously traumatizing. A week later I still am unable to get the finger wet or use it. I usually take my dogs when I walk (we have two), but I cannot hold a leash so I cannot take them. It would just be cruel to take one and not the other. Of course, I cannot do yoga. It's amazing how much you use that one finger. The week has been a little rough. Not to mention how badly it hurts.
So, as I was walking this morning, irritated because I wanted to take my dogs. Irritated because I'd rather do yoga since I have been deprived of it for a week now. Then I thought, "Everything I enjoy gets taken away from me!" As I talked myself down from that negativity, reminding myself the finger injury is only temporary, that's when the light clicked on. I was starting to beat myself up over being depressed when I realized, it is not depression at all. I have the mindset to walk myself out of that hole. I have the mindset to see the positive in all the negative. That's not the mind of a depressed person. Often, clinically depress can not even fathom positive thoughts. They do not see a light at the end of a tunnel or any hope. The anxiety of my fears is crippling me. As that thought came into my head, I started to examine recent events and my reaction to them. I started to notice just how badly the anxiety may be affecting me.
I am low on energy as it is. I prefer to utilize the energy I have for my son and husband. They are my priorities and therefore they deserve my best. My second priority is exercise. Without exercise, digestion, stress, and energy would be huge concerns. Exercise gives me more energy. It loosens my joints and muscles with lubrication and blood flow. It allows me this time to myself to just be me, and that is a huge stress reliever. Without exercise, it seems as if nothing moves inside my belly. Of course, exercise stabilizes blood sugar. All other energy just trickles down. If I have enough energy for fun with friends or family, I'll take advantage. Usually, the latter is what suffers the most.
I have noticed, moreso lately, that I haven't had a whole lot of energy left over for extra fun. I have declined invitations by friends for many things. Partly and mostly due to the fact that I do not feel well enough to get out and do something. Many times it is because I am just zapped completely of energy. While thinking back, I think anxiety has a lot to do with my lower than normal energy lately. I am so consumed by what may attack me next or what may be affected by external factors I cannot control, I have resorted to staying in my bubble as much as possible.
Spontaneity is not in my vocabulary currently. I have so many medications, diet restrictions, and physical limitations that picking up at a moment's notice is nearly impossible. If I do not have food prepared, I cannot just walk in to any grocery store or fast food restaurant and order something. Believe it or not I have been contaminated many times from just ordering a fountain drink. These restaurants are full of contaminating foods. Most packaged food has some sort of preservative or chemical or gluten that I cannot eat. My diet consists mostly all natural, whole foods. That's hard to get on the go. I need to be close to my insulin and testing supplies as well as my emergency medical devices. Although, many of this stuff comes in a portable form, I would need a suitcase rather than a purse to carry it all with me at all times.
The shear totality of what I face on a daily basis and the fact that I am completely competent and aware of it all leads to some overwhelming feelings. I tell my husband from time to time, I wish I didn't understand it all so well or that my awareness will fade a bit. I am already a bit of an introvert. I have always been a bit of a worrier so I guess that would classified as anxious. Pile on all these illnesses, their complications and their treatments, I've got myself in a bit of a beautiful disaster waiting to happen.
I move on to thinking (as my problem-solving, take the bull by the horns mind works) how do I fix this? I do not have money for a therapist nor have I ever felt like they help. I do not want to be classified as depressed considering I am grateful for the gifts in my life and see them on a daily basis. I do not want to burden friends and family with these thoughts. They run through my head continuously. If I were a friend or family member of myself, I would run at the thought of constant complaining or worrying. We all have things to worry about. What makes me different? Different worries, of course, but my worries are no more important than the rest I would assume. How do I tell myself to have faith in God's plan and stop sweating the mall stuff? How do I tell my heart to listen to my head?
And with that, I end this. It is long enough to begin with, but really how much deeper can we get into worrying and anxiety? All the worrying in the world never fixed any crisis. Worrying has never solved any problem. Anxiety seems useful in a dangerous situation, but to have that "fight or flight" response on a constant basis is exhausting and seemingly useless.
Thursday, August 30, 2012
Full Circle
I'm starting to believe that life, in itself, is inevitably a whirlwind. Every time I think things might be leveling out and I can actually relax, something always comes up. I am learning, due to listening (wink, wink imagine what can happen when you pay attention), that my life is not that unusual. The details are different, the whirlwind is the same.
I haven't been feeling up to par lately. I ignored it and kept pushing on because it is the end of summer and school is starting. It is a stressful, crazy, busy time for all of us, not just parents. I assumed that once the routine was in place and things in the environment calmed down, my body would rest and I would recoup. Unfortunately, that hasn't happened.
Last Thursday I had an unusual episode. I have not had a grand mal seizure since June 2010. I don't remember the last petit mal or partial complex seizure I have had. I was so used to having them daily, then they slowed and were more sporadic until it got to the point that I didn't even note them. Thursday I was feeling very tired and just not well. There was a bright light, then shooting pain into my eyes that radiated into my head. A confusion spell followed that lasted a minute or so. I never lost consciousness. When I was able to focus again, it was like I was looking through a tunnel. My peripheral vision was still filled with that bright light and it was incredibly painful to move my eyes. The headache only worsened and never subsided.
That day I had already obligated myself to volunteer at my son's school. I went ahead and went about my day in pain and exhausted the entire time. My ultimate thought is always that all I need is a good night's rest and tomorrow will be better. That got me through the day. A week later I am still in pain.
The following Monday, my husband and I were scheduled to travel to see two of my specialists, the endocrinologist (establishing with a new one yet again due to doctors leaving our small town) and the rheumatologist. Five o'clock that morning we get a call from my mother in law. My husband's aunt, who happens to have Downs Syndrome and Rheumatoid Arthritis, was being rushed to the emergency room. She had also not been feeling well since Thursday. We thought we got a bug together. She was not able to breath. She was admitted with pneumonia within 2 hours. We could not reschedule or cancel my appointments on such short notice, but we were worried.
We got our son ready for school, followed his morning routine, packed and headed straight to the hospital. His aunt is in her late 40s. This is a huge accomplishment for someone with her history. Most recently she had a bone marrow biopsy due to fear of leukemia (that came back normal). So, you could imagine, it is frightening to see her in the hospital. We tied up loose ends and headed up to see my doctors.
I was super nervous about establishing with my new endo. I was diagnosed (with the Type I Diabetes) by this wonderful doctor who left the hospital I was established at months after. I was then with another great endo for the last 7 years. He left that hospital system as well. I established with a local endo, but he left the practice he had only a year after. I wanted to follow him where ever he transferred, but at the time he left he had no clear idea of where he was going. My rheumatologist actually referred me to my new endo and when I heard his name I almost dropped. It was the original doctor who had diagnosed me. I was stoked because I knew he was good, I knew he knew me, and I knew his style.
Still, I get nervous to walk into a new doctor of any specialty and lay out my history. Will they believe me or look at me like a hypochondriac? Will they agree with the treatment the other doctors have already established? Will he change something I am not comfortable with or find something I didn't know about? It's like a blind date from hell.
As we were registering for that endo appointment early Tuesday morning, with our aunt on our minds, we see the endo I had locally walk by. He got a job at the facility where I had been referred. Ironic and awesome. He knows my case. Now, I know where he is if I am not comfortable with this new doctor or if the doctor has questions, they can exchange notes. So, not only was it a full circle moment to be back with the endo I had first met and meant so much to me, but I knew someone who dealt with my current situation was there as well. I felt like I was in a nice little safety net.
Now, to get to the nitty gritty I'd like to forget. I had many concerns that have been haunting me for years. I occasionally bring them up to different specialists, but they always get pushed under the rug, ignored, or overlooked with more serious concerns. At this point, these things are progressing and becoming more of a problem in my daily life. Since the beginning of my diabetes I have dealt with intermittent numbness, tingling, and burning pain in my extremities. For a while it was talked away as "feeling the symptoms of higher blood sugars", then it was thought to be caused by the malabsorption and we were told it would resolve. At this point, there is definitely no clear connection to blood sugars as my A1C is 6.1% (which is AWESOME). I reported this to the new/old endo.
He agreed it was not connected to "symptoms of highs". He was, of course, concerned about my nutrition due to the malabsorption and bucket of digestive problems. He wanted to test all of those, but asked about my neurology treatment. I have seizures and am followed by an neurologist, but I have never met a neurologist that pays attention to anything but the seizures. Another concern of the endo was this episode that happened the previous Thursday, now 3 days back, and the pain had not subsided.....in fact it was getting worse. He recommendation was to test the nutrients along with many other things through blood tests, but he also wanted me to contact my neurologist. The endo wanted the episode to be tended to as well as an EMG (electromyography) along with a nerve conduction study. These tests determine if and where there is possible nerve damage. Another thought was that a past grand mal seizure could have caused whiplash (which has happened with a few seizures) and a disc may be out of place. Any way you look at it, he wanted the neurologist to look at the WHOLE picture not just the seizures. He actually is researching to find a neurologist we think can handle the totality of my situation.
Then, we move onto rheumatology. He thoughts we right in line with my endo. That in itself is like heaven. Rarely do doctors agree. I never discuss doctors opinions among doctors to protect egos. I take in all the info from everyone I see, use what I think is useful, and toss what I am not comfortable with. For two doctors to have almost identical ideas, thoughts, and recommendations is remarkable. Both doctors are worried about adrenal insufficiency (Addison's disease) and malabsorption. Blood tests were done, and I am glad to report no new findings at this time. Also notable is that my diabetes as well as lupus are as stable as we can get right now. Talk about a slam dunk!
Throughout all of this, we were corresponding with relatives down home. There was a concern that our aunt had congestive heart failure and she seemed to be getting worse not better. We left those appointments emotional wrecks. Glad to have attentive doctors who are going to be so thorough. Glad to have some bulldogs on my case to help me. Them along with my primary and my immunologist are really taking this bull by the horns. But....always a but......there are these serious concerns. And our aunt is declining.
On our way home I contacted my current neurologist to report my "episode". I won't even bother you with the mess it was to report it and get it handled and treated. Let's just say that was w whole other level of unnecessary stress. The neurologist put me on a round a steroids. The explanation I was given was it was most likely a petit mal seizure that rebounded with a migraine. Inflammation in the vessels of the brain needed to be reduced, and therefore the steroids are necessary. Another ironic occurrence because my endo had just warned me that continued steroid treatments may speed up the adrenal insufficiency. He stressed to us that steroid treatments be used minimally to treat inflammation and contact him to notify him if I am in need of steroid treatment. So, a few short hours after walking out of his office, I was calling to report steroid use. For those of you who do not know, steroids raise blood sugars and it can be very serious in diabetics. My comorbidities lead to a very meticulous juggle act. All of this was dealt with on the road on our way home.
We got home Tuesday evening and rushed to see our aunt. I am happy to report there was no congestive heart failure detected, but unfortunately the pneumonia is not clearing. There is talk today about transferring her into ICU. That side of the family just lost an uncle a few short years ago. This is a big scare. This aunt is the baby of the family. She is also the heart and the smile of us all, such an inspiration and light in our lives. We will leave this in God's hands. She deserves His best.
We are back around to Thursday again. I am on my second day of my steroid treatment. I am advised to be extremely careful with activity and exposure because in my current state I am easily susceptible to infection or complications. How do I do that at a time like this?! I volunteered again today at my son's school. This will be a weekly thing. I am staying away from the hospital room, but trying my best to help out the family members who are there by dealing with the small things that need to be dealt with outside of the hospital. I am trying to keep their stress levels as low as possible so that our aunt can get the attention she needs and so that everyone can be as healthy as possible to get her through this tough time.
At the school, I was talking with the cafeteria woman and she talked about her family. Apparently, she had a scare with a nephew yesterday. She was tired and stressed from dealing with that. As she vented about it, we got into the history of our families. After talking to a couple close friends yesterday, a few family members, as well as this woman.......it just started to really sink in.....we all have tragedies. We all have scares. We all have fears. We all have too many responsibilities. None of us have enough time to get done what we want to get done. Another one of those, "I wish the world would stop turning long enough for me to catch up....." kinda things.
Usually, with all this going on around me, especially with how I currently feel physically, I would be in a terrible depression. Self pity would have taken over. That would only perpetuate my bad physical state. Maybe it is God's hands carrying me. Maybe it is a coping mechanism. I really don't know. I have this strange sense of calm. I am scared about my unknowns. I am scared and saddened for our aunt's current state. But I am waking up everyday and going about my business. All I can do right now is do what I NEED to do. I will do my best. I will let the professionals handle the worries of the health for both myself and our aunt. I will work through my obligations and responsibilities one by one. It will get done in due time.
Then, I see Robin Roberts farewell for her leave from Good Morning America. I have an uncle in the hospital right now going through a very similar health issue. We have been watching him go through it for several years now. His immediate family has been through so much. And watching the GMA family and Robin Roberts family was so heart breaking and heartwarming in the same breath. I just breathe in and breathe out. I thank God for the gifts we have around us. I don't feel angry or sad about our struggles. I realize everyone has struggle and turmoil in their life. It may not always be in the form of health issues, but the struggles are there nonetheless.
I see God's work everyday in my son's eyes. His innocence, his joy, his curiosity, his life. I see God's work in our aunt who has beat so much and is still fighting with a smile on her face and the gall to still flirt with the respiratory therapist she thinks is a cutie (she is boy crazy). I see the beautiful sky. I hear the songs of the birds. I feel the love from my friends and my family. I get reminders of the dad I lost and love daily.
My life is good. I am so rich with love, faith, and joy.
I haven't been feeling up to par lately. I ignored it and kept pushing on because it is the end of summer and school is starting. It is a stressful, crazy, busy time for all of us, not just parents. I assumed that once the routine was in place and things in the environment calmed down, my body would rest and I would recoup. Unfortunately, that hasn't happened.
Last Thursday I had an unusual episode. I have not had a grand mal seizure since June 2010. I don't remember the last petit mal or partial complex seizure I have had. I was so used to having them daily, then they slowed and were more sporadic until it got to the point that I didn't even note them. Thursday I was feeling very tired and just not well. There was a bright light, then shooting pain into my eyes that radiated into my head. A confusion spell followed that lasted a minute or so. I never lost consciousness. When I was able to focus again, it was like I was looking through a tunnel. My peripheral vision was still filled with that bright light and it was incredibly painful to move my eyes. The headache only worsened and never subsided.
That day I had already obligated myself to volunteer at my son's school. I went ahead and went about my day in pain and exhausted the entire time. My ultimate thought is always that all I need is a good night's rest and tomorrow will be better. That got me through the day. A week later I am still in pain.
The following Monday, my husband and I were scheduled to travel to see two of my specialists, the endocrinologist (establishing with a new one yet again due to doctors leaving our small town) and the rheumatologist. Five o'clock that morning we get a call from my mother in law. My husband's aunt, who happens to have Downs Syndrome and Rheumatoid Arthritis, was being rushed to the emergency room. She had also not been feeling well since Thursday. We thought we got a bug together. She was not able to breath. She was admitted with pneumonia within 2 hours. We could not reschedule or cancel my appointments on such short notice, but we were worried.
We got our son ready for school, followed his morning routine, packed and headed straight to the hospital. His aunt is in her late 40s. This is a huge accomplishment for someone with her history. Most recently she had a bone marrow biopsy due to fear of leukemia (that came back normal). So, you could imagine, it is frightening to see her in the hospital. We tied up loose ends and headed up to see my doctors.
I was super nervous about establishing with my new endo. I was diagnosed (with the Type I Diabetes) by this wonderful doctor who left the hospital I was established at months after. I was then with another great endo for the last 7 years. He left that hospital system as well. I established with a local endo, but he left the practice he had only a year after. I wanted to follow him where ever he transferred, but at the time he left he had no clear idea of where he was going. My rheumatologist actually referred me to my new endo and when I heard his name I almost dropped. It was the original doctor who had diagnosed me. I was stoked because I knew he was good, I knew he knew me, and I knew his style.
Still, I get nervous to walk into a new doctor of any specialty and lay out my history. Will they believe me or look at me like a hypochondriac? Will they agree with the treatment the other doctors have already established? Will he change something I am not comfortable with or find something I didn't know about? It's like a blind date from hell.
As we were registering for that endo appointment early Tuesday morning, with our aunt on our minds, we see the endo I had locally walk by. He got a job at the facility where I had been referred. Ironic and awesome. He knows my case. Now, I know where he is if I am not comfortable with this new doctor or if the doctor has questions, they can exchange notes. So, not only was it a full circle moment to be back with the endo I had first met and meant so much to me, but I knew someone who dealt with my current situation was there as well. I felt like I was in a nice little safety net.
Now, to get to the nitty gritty I'd like to forget. I had many concerns that have been haunting me for years. I occasionally bring them up to different specialists, but they always get pushed under the rug, ignored, or overlooked with more serious concerns. At this point, these things are progressing and becoming more of a problem in my daily life. Since the beginning of my diabetes I have dealt with intermittent numbness, tingling, and burning pain in my extremities. For a while it was talked away as "feeling the symptoms of higher blood sugars", then it was thought to be caused by the malabsorption and we were told it would resolve. At this point, there is definitely no clear connection to blood sugars as my A1C is 6.1% (which is AWESOME). I reported this to the new/old endo.
He agreed it was not connected to "symptoms of highs". He was, of course, concerned about my nutrition due to the malabsorption and bucket of digestive problems. He wanted to test all of those, but asked about my neurology treatment. I have seizures and am followed by an neurologist, but I have never met a neurologist that pays attention to anything but the seizures. Another concern of the endo was this episode that happened the previous Thursday, now 3 days back, and the pain had not subsided.....in fact it was getting worse. He recommendation was to test the nutrients along with many other things through blood tests, but he also wanted me to contact my neurologist. The endo wanted the episode to be tended to as well as an EMG (electromyography) along with a nerve conduction study. These tests determine if and where there is possible nerve damage. Another thought was that a past grand mal seizure could have caused whiplash (which has happened with a few seizures) and a disc may be out of place. Any way you look at it, he wanted the neurologist to look at the WHOLE picture not just the seizures. He actually is researching to find a neurologist we think can handle the totality of my situation.
Then, we move onto rheumatology. He thoughts we right in line with my endo. That in itself is like heaven. Rarely do doctors agree. I never discuss doctors opinions among doctors to protect egos. I take in all the info from everyone I see, use what I think is useful, and toss what I am not comfortable with. For two doctors to have almost identical ideas, thoughts, and recommendations is remarkable. Both doctors are worried about adrenal insufficiency (Addison's disease) and malabsorption. Blood tests were done, and I am glad to report no new findings at this time. Also notable is that my diabetes as well as lupus are as stable as we can get right now. Talk about a slam dunk!
Throughout all of this, we were corresponding with relatives down home. There was a concern that our aunt had congestive heart failure and she seemed to be getting worse not better. We left those appointments emotional wrecks. Glad to have attentive doctors who are going to be so thorough. Glad to have some bulldogs on my case to help me. Them along with my primary and my immunologist are really taking this bull by the horns. But....always a but......there are these serious concerns. And our aunt is declining.
On our way home I contacted my current neurologist to report my "episode". I won't even bother you with the mess it was to report it and get it handled and treated. Let's just say that was w whole other level of unnecessary stress. The neurologist put me on a round a steroids. The explanation I was given was it was most likely a petit mal seizure that rebounded with a migraine. Inflammation in the vessels of the brain needed to be reduced, and therefore the steroids are necessary. Another ironic occurrence because my endo had just warned me that continued steroid treatments may speed up the adrenal insufficiency. He stressed to us that steroid treatments be used minimally to treat inflammation and contact him to notify him if I am in need of steroid treatment. So, a few short hours after walking out of his office, I was calling to report steroid use. For those of you who do not know, steroids raise blood sugars and it can be very serious in diabetics. My comorbidities lead to a very meticulous juggle act. All of this was dealt with on the road on our way home.
We got home Tuesday evening and rushed to see our aunt. I am happy to report there was no congestive heart failure detected, but unfortunately the pneumonia is not clearing. There is talk today about transferring her into ICU. That side of the family just lost an uncle a few short years ago. This is a big scare. This aunt is the baby of the family. She is also the heart and the smile of us all, such an inspiration and light in our lives. We will leave this in God's hands. She deserves His best.
We are back around to Thursday again. I am on my second day of my steroid treatment. I am advised to be extremely careful with activity and exposure because in my current state I am easily susceptible to infection or complications. How do I do that at a time like this?! I volunteered again today at my son's school. This will be a weekly thing. I am staying away from the hospital room, but trying my best to help out the family members who are there by dealing with the small things that need to be dealt with outside of the hospital. I am trying to keep their stress levels as low as possible so that our aunt can get the attention she needs and so that everyone can be as healthy as possible to get her through this tough time.
At the school, I was talking with the cafeteria woman and she talked about her family. Apparently, she had a scare with a nephew yesterday. She was tired and stressed from dealing with that. As she vented about it, we got into the history of our families. After talking to a couple close friends yesterday, a few family members, as well as this woman.......it just started to really sink in.....we all have tragedies. We all have scares. We all have fears. We all have too many responsibilities. None of us have enough time to get done what we want to get done. Another one of those, "I wish the world would stop turning long enough for me to catch up....." kinda things.
Usually, with all this going on around me, especially with how I currently feel physically, I would be in a terrible depression. Self pity would have taken over. That would only perpetuate my bad physical state. Maybe it is God's hands carrying me. Maybe it is a coping mechanism. I really don't know. I have this strange sense of calm. I am scared about my unknowns. I am scared and saddened for our aunt's current state. But I am waking up everyday and going about my business. All I can do right now is do what I NEED to do. I will do my best. I will let the professionals handle the worries of the health for both myself and our aunt. I will work through my obligations and responsibilities one by one. It will get done in due time.
Then, I see Robin Roberts farewell for her leave from Good Morning America. I have an uncle in the hospital right now going through a very similar health issue. We have been watching him go through it for several years now. His immediate family has been through so much. And watching the GMA family and Robin Roberts family was so heart breaking and heartwarming in the same breath. I just breathe in and breathe out. I thank God for the gifts we have around us. I don't feel angry or sad about our struggles. I realize everyone has struggle and turmoil in their life. It may not always be in the form of health issues, but the struggles are there nonetheless.
I see God's work everyday in my son's eyes. His innocence, his joy, his curiosity, his life. I see God's work in our aunt who has beat so much and is still fighting with a smile on her face and the gall to still flirt with the respiratory therapist she thinks is a cutie (she is boy crazy). I see the beautiful sky. I hear the songs of the birds. I feel the love from my friends and my family. I get reminders of the dad I lost and love daily.
My life is good. I am so rich with love, faith, and joy.
Friday, March 16, 2012
The Best Days Of My Life
Hello all. Another week down. Another appointment under my belt.
It has been a rough week to put it mildly. As many of us know, stress is becoming a major epidemic in today's society and culture. Not only do those of us with chronic illnesses have things to worry about everyday, but the entire world is going through so much economically, politically, etc. I always feel so overwhelmed with what I have on my plate, I find it hard to keep up with current events and pop culture because it adds a whole other level of worry. My family, of course, is not immune to any of this. As a prime example, I believe as a family, we had a nervous breakdown this past weekend. In the days following, we have been trying to pick up the pieces and mend the residual damage.
In doing so, I have been avoiding modern technology. I find, for myself, that refocusing my thoughts and priorities is usually what it takes to get my mind back on the right track. I find myself resenting what I see on television or on the computer that I desire but do not have. I find myself getting emotionally involved and attached to news stories from across the world, and in turn having a strong desire to do something about it. In reality, I have no control over politics. I have no control over natural disasters. I have no control over who's cheating on who, or who's lying about what. No control, must let it go.
Today, I actually sat down and watch television. I allowed myself to relax and watch an entire show. John Ramsey was on this particular program. He was discussing what has gone on in his life over the past 15 years, since the death of his 6 year old daughter Jon-Benet. He lost his daughter, he and his family were looked at as having something to do with the tragic death, he lost his wife, after her death the family was publicly cleared of any wrong doing in the death of Jon-Benet, and finally he found a new love, a new wife. He has written a book about his ordeal. I could imagine it would help so many going through any type of struggle in life to put things into perspective.
He said one important thing that stuck out to me. He was asked how he was able to find happiness after so much turmoil. He said that a few years ago a good friend asked him, "Do you think the best days of your life are behind you." John said, "Well, yes. How could they not be?" His friend replied with a comment similar to: You have to think the best days of your life are ahead of you. John explained why that made so much sense. There has to be something to look forward to. This is what we call hope. You must believe that the best days of your life are ahead of you.
I quickly jumped to my desk to write this down. I thought, "There has got to be some way I can use this. Is it possible for the best days of my life to still be ahead of me?" An honest question. Ironically, as I'm talking to myself and jotting this down, John is still on the TV in the background explaining it may not be what we expect, it may not be what we planned, it probably isn't what we think will make us happy right this very moment, but if you don't believe there is something better out there for you...... God puts us on this earth for a purpose. That lead me to one of my favorite thoughts, "God does not cause suffering in vain. He would not put us through something so hard for no reason." It started coming together for me.
Still, even writing this blog, hoping someone out there is reading and actually getting something from my ramblings, I still don't feel that peace. I am seeking it, actively. I want that peace of mind that it is all going to be ok. I am doing my best in every possible way, and that is all I have control over. I have begun to pray outwardly. I actually get down on my knees and open my mouth and speak my prayers. I consciously decide to find the good in every situation, which actually starts becoming second nature quite quickly. I actively slow my snowballing negative thoughts to grasp reality and look at things more rationally. Yet, I am still not whole.
I mentioned that I had another appointment this week. This was a follow up with my immunologist, whom I am beginning to love. No big news, thank goodness. We are making an attempt to control the allergies he discovered in hopes that it will help with my energy levels and daily feeling of malaise. He along with my primary believe that many symptoms from the combination of diseases I have may subside once my body is not under so much stress. I believe they are right. I have hope that the allergy medication along with allergy shots will help lift some of the weight off so my body can gain some strength and control.
I also wanted confirmation on the most recent diagnosis. It is new to me as is the terminology surrounding it. I wanted to be able to relay the information on my blog as well as understand what I am facing. I have APS II or autoimmune polyglandular syndrome type 2 aka Schmidt syndrome. It is a rare disorder in which the immune system attacks several different organs or glands throughout the body. Most typically it is seen with someone who has been diagnosed with Addison's disease (a condition where the body does not produce enough cortisol) along with Type I diabetes or Hypothyroidism. I, however, have not been diagnosed with Addison's. It has been thrown about and I have been tested for it, but no diagnosis has been made there. Since it is a rare syndrome there is little information on it. There are also very few doctors who understand the scope of it. Even my immunologist consulted with doctors at a university to insure the diagnosis. As I learn more, I will write more and inform more, but I would like to back away from that at this time to prevent misinformation to needy people.
I only want to inform, inspire, and release. I hope that my new saying, "The best days of my life are still ahead of me" will begin to become a natural part of my thinking. I hope that it can inspire me to do something positive with the nervous energy that builds up, as it always does. I am always looking for inspiration. I am always looking for that one thing that is going to spark the passion in me I had before it swept so quickly away. I am here for a reason. I am here for good.
It has been a rough week to put it mildly. As many of us know, stress is becoming a major epidemic in today's society and culture. Not only do those of us with chronic illnesses have things to worry about everyday, but the entire world is going through so much economically, politically, etc. I always feel so overwhelmed with what I have on my plate, I find it hard to keep up with current events and pop culture because it adds a whole other level of worry. My family, of course, is not immune to any of this. As a prime example, I believe as a family, we had a nervous breakdown this past weekend. In the days following, we have been trying to pick up the pieces and mend the residual damage.
In doing so, I have been avoiding modern technology. I find, for myself, that refocusing my thoughts and priorities is usually what it takes to get my mind back on the right track. I find myself resenting what I see on television or on the computer that I desire but do not have. I find myself getting emotionally involved and attached to news stories from across the world, and in turn having a strong desire to do something about it. In reality, I have no control over politics. I have no control over natural disasters. I have no control over who's cheating on who, or who's lying about what. No control, must let it go.
Today, I actually sat down and watch television. I allowed myself to relax and watch an entire show. John Ramsey was on this particular program. He was discussing what has gone on in his life over the past 15 years, since the death of his 6 year old daughter Jon-Benet. He lost his daughter, he and his family were looked at as having something to do with the tragic death, he lost his wife, after her death the family was publicly cleared of any wrong doing in the death of Jon-Benet, and finally he found a new love, a new wife. He has written a book about his ordeal. I could imagine it would help so many going through any type of struggle in life to put things into perspective.
He said one important thing that stuck out to me. He was asked how he was able to find happiness after so much turmoil. He said that a few years ago a good friend asked him, "Do you think the best days of your life are behind you." John said, "Well, yes. How could they not be?" His friend replied with a comment similar to: You have to think the best days of your life are ahead of you. John explained why that made so much sense. There has to be something to look forward to. This is what we call hope. You must believe that the best days of your life are ahead of you.
I quickly jumped to my desk to write this down. I thought, "There has got to be some way I can use this. Is it possible for the best days of my life to still be ahead of me?" An honest question. Ironically, as I'm talking to myself and jotting this down, John is still on the TV in the background explaining it may not be what we expect, it may not be what we planned, it probably isn't what we think will make us happy right this very moment, but if you don't believe there is something better out there for you...... God puts us on this earth for a purpose. That lead me to one of my favorite thoughts, "God does not cause suffering in vain. He would not put us through something so hard for no reason." It started coming together for me.
Still, even writing this blog, hoping someone out there is reading and actually getting something from my ramblings, I still don't feel that peace. I am seeking it, actively. I want that peace of mind that it is all going to be ok. I am doing my best in every possible way, and that is all I have control over. I have begun to pray outwardly. I actually get down on my knees and open my mouth and speak my prayers. I consciously decide to find the good in every situation, which actually starts becoming second nature quite quickly. I actively slow my snowballing negative thoughts to grasp reality and look at things more rationally. Yet, I am still not whole.
I mentioned that I had another appointment this week. This was a follow up with my immunologist, whom I am beginning to love. No big news, thank goodness. We are making an attempt to control the allergies he discovered in hopes that it will help with my energy levels and daily feeling of malaise. He along with my primary believe that many symptoms from the combination of diseases I have may subside once my body is not under so much stress. I believe they are right. I have hope that the allergy medication along with allergy shots will help lift some of the weight off so my body can gain some strength and control.
I also wanted confirmation on the most recent diagnosis. It is new to me as is the terminology surrounding it. I wanted to be able to relay the information on my blog as well as understand what I am facing. I have APS II or autoimmune polyglandular syndrome type 2 aka Schmidt syndrome. It is a rare disorder in which the immune system attacks several different organs or glands throughout the body. Most typically it is seen with someone who has been diagnosed with Addison's disease (a condition where the body does not produce enough cortisol) along with Type I diabetes or Hypothyroidism. I, however, have not been diagnosed with Addison's. It has been thrown about and I have been tested for it, but no diagnosis has been made there. Since it is a rare syndrome there is little information on it. There are also very few doctors who understand the scope of it. Even my immunologist consulted with doctors at a university to insure the diagnosis. As I learn more, I will write more and inform more, but I would like to back away from that at this time to prevent misinformation to needy people.
I only want to inform, inspire, and release. I hope that my new saying, "The best days of my life are still ahead of me" will begin to become a natural part of my thinking. I hope that it can inspire me to do something positive with the nervous energy that builds up, as it always does. I am always looking for inspiration. I am always looking for that one thing that is going to spark the passion in me I had before it swept so quickly away. I am here for a reason. I am here for good.
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