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 undiffientiated connective tissue disease. Show all posts
Showing posts with label undiffientiated connective tissue disease. Show all posts
Wednesday, September 11, 2013
Friday, October 5, 2012
Chance Meetings
Yesterday I went to my son's soccer game. I have to say that watching kids as young as 3 years old try to figure out and play the game of soccer, in itself, is a joy. He has been playing since he was 5 and he is about to turn 7. At this age they still do not have a full field or team. The coaches are allowed on the field to guide and direct the players. It is total chaos with plenty of smiles, laughs, trips, and spills. Best way to spend an hour of your life, in my opinion. The kids joy is contagious.
Building on that, I volunteer to help out during lunch at his school once to twice a week. It's almost like an addiction. I used to volunteer in his head start classes as well. I could never be a teacher. I have so much respect for those who take responsibility for our kids for 6 to 7 hours a day. They put in so much work, it is remarkable. Volunteering, however, is at my own will, and I am not held "accountable" for much so the stress aspect is removed. I get to just fully enjoy the innocence and joy of children. Even in their little arguments or temper tantrums, you can feel their emotions. It really keeps you grounded, and can help remind you what is really worth focusing on in life.
Although, I am supposed to keep my life as "easy" as possible, we all need something to look forward to everyday. I look forward to sharing joys and trials with my son.
Last night, at the soccer game, my mother in law said hello to the woman who sat down right next to me. They seemed as if they knew each other. My mother in law is much more outgoing and vocal than I am, so I brushed it off as her being extra friendly. Within a few minutes, they started up a conversation. It turns out, they knew each other because they worked together at an elementary school a few years back. My mother in law had been there 30 plus years until last May when she retired. This woman I had never seen so I assumed it was a short term working relationship they had. I was right.
As the conversation went on, they got to the topic of "What are you up to now?" My mother in law talked about her retirement and the freedom she enjoys these days. The other woman said "my lupus began to flare up so my husband suggested I just stay at home to take care of myself. I work a few days now at the college, but....." That's when my mother in law gave me the look.
She and I had just been discussing the frustrations of all the medicines, appointments, tests, and maintenance I go through with all these diseases. While waiting for these most recent neurology episodes to be figured out, it seems to make things more difficult. I am one big, giant Jenga game on top of a high wire. I am one symptom or one medication away from the whole thing toppling over. I have to be so careful as to what I chose to do and what treatments I decide to use because one inevitably affects another. I was telling her that sometimes I think that modern medicine is a cop out and we should let natural selection do its job. BUT I want to be here for my son and I truly see the treatments as a gift.....I'm just tired of the mary-go-round.
I do not, especially with strangers (face to face), openly discuss my illnesses unless directly asked or it is a necessity. My mother in law's look was her nudging me to speak to this woman. I opened my mouth, "Is it just too tiring to work with your lupus?"
That began our conversation. Turns out she was having very similar neurological problems that preceded her leaving her job. She is old enough to be my mother because she was there watching her grandson who is on my son's team. She talked about the years of mystery she went through with doctors not knowing what was wrong with her. It wasn't until after her 3rd child, I believe to be about 25-30 right now, did doctors finally diagnosed her with lupus. As the conversation went on, I realized what a mirror I was looking into. It was almost refreshing....if nothing else, validating.
I explained to her that I have never actually met another person with lupus. I have seen them on TV, read about them online or in magazines, heard my doctors stories of other patients, but NEVER have I met anyone with lupus before. She was very friendly and kind. She told me I would be in her prayers. I was so intrigued by every word she said, yet it was this casual conversation during our kid's/ grand kid's soccer game.
I came home and told my husband all about it. I felt so good knowing that the symptoms I have are not a mystery. They are a mystery to us, but this other lupus patient has them and is being treated so there is hope. I am not crazy or a hypochondriac because she talked to me and told me these things first hand before I even let on that these symptoms were bothering me. It is a feeling I cannot describe. A feeling of, "I knew I wasn't alone, but now I am really not alone.....not even in this town. There is someone else who understands from the inside." That was enough for me to walk away with some peace.
My husband and I got into the deep talking. I told him it was almost bittersweet meeting her. I am glad to feel validated. I am glad to not feel like such an outcast. I am glad to see this woman being able to go see her grandchildren play soccer. She got to watch her 3 children grow up to adulthood, get married, and have kids. That's something I thought was impossible for myself. Then, to know she has had similar symptoms and problems that have been determined and treated gives me hope.
The flip side to this all is the look in her face. She was just as tired, frustrated, and depleted as I. She and I were the only two wearing hoodies and shivering. It was an evening game in New Mexico fall so even though the temperature was 65-70 degrees, the breeze was cold. Lupus patients, especially on treatment, are very cold intolerant. I'll spare the science behind it, but it has something to do with vasoconstriction. She also talked about her "wasted degrees" because she can not work due to her illness. "All the wasted time and effort and knowledge" she said. (My husband has always told me "knowledge is priceless, a degree is never wasted") She even spoke of the misunderstanding from the outside world. We look like normal people on the outside so we are often judged when a flare up occurs. I could tell her emotions were so very similar to my own on the inside even though neither of us went there when talking to one another.
That fear of this constant struggle. It haunts me. It used to haunt me before I had any diagnoses, wondering if I would ever feel like myself again or get some relief. Now, I have plenty of diagnoses combined with some stability in many areas, yet I still feel physically bad more days than not (4-5 out of 7 days in a week). That look in her eye and that unspoken understanding of how hard it all is, broke my heart. I told my husband, "I would love to see our son grow up and live to see his children grow, but I cannot imagine another 40 years of this day in and day out."
That is something I will need to mull over the next few days. I will see her often throughout the season so maybe she will be somewhat of a role model. Her grown kids seem very happy and love her dearly, so she did something right. Plus, the family is so close knit. All things to strive for in my future. It is so hard to compartmentalize the negative aspects out of all that good.
As I laid in bed last night thinking about the days events I told myself I needed to blog about this chance meeting I had because it was so impactful. I sat down at my computer to get this novel of a blog (as they all are) out, and I had an epiphany- there have been more chance meetings I was not so astute about. The woman who works in the cafeteria at my son's school had a daughter with Type I Diabetes. Unfortunately, the daughter has since passed away. I believe she would be in her early 40s by now. October is particularly hard for the mother because her daughter passed on Halloween. Nonetheless, yesterday she had us decorating up a storm in the cafeteria for the kids to enjoy this month.
School has been in session for about 6 weeks and I have been volunteering for at least a month now. Throughout this month we have shared small talk that gradually leads into personal short stories. She has shared with me several stories of her daughter. Mostly good. All the little quirks she had and the funny things she would say or do. She also talks about the dog she inherited from her daughter. This lunch lady has seen so much trouble in her life, and yet every time I show up, there she is with a smile on her face and a friendly greeting.
In the short month or so I have been working with her and getting to know her she has taught me so much. I also enjoy the fact that she is not judgemental or insensitive to me about any of the limitations I have or special requirements that may be necessary.
I look at this now as a way God is walking me through this, if not carrying me. I may not always take notice, but he is sending down subtle signs here, there, and everywhere that, no-matter-what, we are all going to be OK. That, in its own right, gives me peace and puts a smile on my face. I feel horrible today, but I feel taken care of and watched over as well. That makes the pain a little easier to take.
I do have to note my son goes to a Catholic school so every Thursday morning they have mass as well as complete their catechism requirements during school hours. The other day he came home from school and told me he was so happy to learn that I will not be sick in heaven. "In heaven, everyone is young and healthy. At their best." he said with a beaming smile. To that, all I could respond was "You're absolutely right." with a big return hug and an equally beaming smile.
Building on that, I volunteer to help out during lunch at his school once to twice a week. It's almost like an addiction. I used to volunteer in his head start classes as well. I could never be a teacher. I have so much respect for those who take responsibility for our kids for 6 to 7 hours a day. They put in so much work, it is remarkable. Volunteering, however, is at my own will, and I am not held "accountable" for much so the stress aspect is removed. I get to just fully enjoy the innocence and joy of children. Even in their little arguments or temper tantrums, you can feel their emotions. It really keeps you grounded, and can help remind you what is really worth focusing on in life.
Although, I am supposed to keep my life as "easy" as possible, we all need something to look forward to everyday. I look forward to sharing joys and trials with my son.
Last night, at the soccer game, my mother in law said hello to the woman who sat down right next to me. They seemed as if they knew each other. My mother in law is much more outgoing and vocal than I am, so I brushed it off as her being extra friendly. Within a few minutes, they started up a conversation. It turns out, they knew each other because they worked together at an elementary school a few years back. My mother in law had been there 30 plus years until last May when she retired. This woman I had never seen so I assumed it was a short term working relationship they had. I was right.
As the conversation went on, they got to the topic of "What are you up to now?" My mother in law talked about her retirement and the freedom she enjoys these days. The other woman said "my lupus began to flare up so my husband suggested I just stay at home to take care of myself. I work a few days now at the college, but....." That's when my mother in law gave me the look.
She and I had just been discussing the frustrations of all the medicines, appointments, tests, and maintenance I go through with all these diseases. While waiting for these most recent neurology episodes to be figured out, it seems to make things more difficult. I am one big, giant Jenga game on top of a high wire. I am one symptom or one medication away from the whole thing toppling over. I have to be so careful as to what I chose to do and what treatments I decide to use because one inevitably affects another. I was telling her that sometimes I think that modern medicine is a cop out and we should let natural selection do its job. BUT I want to be here for my son and I truly see the treatments as a gift.....I'm just tired of the mary-go-round.
I do not, especially with strangers (face to face), openly discuss my illnesses unless directly asked or it is a necessity. My mother in law's look was her nudging me to speak to this woman. I opened my mouth, "Is it just too tiring to work with your lupus?"
That began our conversation. Turns out she was having very similar neurological problems that preceded her leaving her job. She is old enough to be my mother because she was there watching her grandson who is on my son's team. She talked about the years of mystery she went through with doctors not knowing what was wrong with her. It wasn't until after her 3rd child, I believe to be about 25-30 right now, did doctors finally diagnosed her with lupus. As the conversation went on, I realized what a mirror I was looking into. It was almost refreshing....if nothing else, validating.
I explained to her that I have never actually met another person with lupus. I have seen them on TV, read about them online or in magazines, heard my doctors stories of other patients, but NEVER have I met anyone with lupus before. She was very friendly and kind. She told me I would be in her prayers. I was so intrigued by every word she said, yet it was this casual conversation during our kid's/ grand kid's soccer game.
I came home and told my husband all about it. I felt so good knowing that the symptoms I have are not a mystery. They are a mystery to us, but this other lupus patient has them and is being treated so there is hope. I am not crazy or a hypochondriac because she talked to me and told me these things first hand before I even let on that these symptoms were bothering me. It is a feeling I cannot describe. A feeling of, "I knew I wasn't alone, but now I am really not alone.....not even in this town. There is someone else who understands from the inside." That was enough for me to walk away with some peace.
My husband and I got into the deep talking. I told him it was almost bittersweet meeting her. I am glad to feel validated. I am glad to not feel like such an outcast. I am glad to see this woman being able to go see her grandchildren play soccer. She got to watch her 3 children grow up to adulthood, get married, and have kids. That's something I thought was impossible for myself. Then, to know she has had similar symptoms and problems that have been determined and treated gives me hope.
The flip side to this all is the look in her face. She was just as tired, frustrated, and depleted as I. She and I were the only two wearing hoodies and shivering. It was an evening game in New Mexico fall so even though the temperature was 65-70 degrees, the breeze was cold. Lupus patients, especially on treatment, are very cold intolerant. I'll spare the science behind it, but it has something to do with vasoconstriction. She also talked about her "wasted degrees" because she can not work due to her illness. "All the wasted time and effort and knowledge" she said. (My husband has always told me "knowledge is priceless, a degree is never wasted") She even spoke of the misunderstanding from the outside world. We look like normal people on the outside so we are often judged when a flare up occurs. I could tell her emotions were so very similar to my own on the inside even though neither of us went there when talking to one another.
That fear of this constant struggle. It haunts me. It used to haunt me before I had any diagnoses, wondering if I would ever feel like myself again or get some relief. Now, I have plenty of diagnoses combined with some stability in many areas, yet I still feel physically bad more days than not (4-5 out of 7 days in a week). That look in her eye and that unspoken understanding of how hard it all is, broke my heart. I told my husband, "I would love to see our son grow up and live to see his children grow, but I cannot imagine another 40 years of this day in and day out."
That is something I will need to mull over the next few days. I will see her often throughout the season so maybe she will be somewhat of a role model. Her grown kids seem very happy and love her dearly, so she did something right. Plus, the family is so close knit. All things to strive for in my future. It is so hard to compartmentalize the negative aspects out of all that good.
As I laid in bed last night thinking about the days events I told myself I needed to blog about this chance meeting I had because it was so impactful. I sat down at my computer to get this novel of a blog (as they all are) out, and I had an epiphany- there have been more chance meetings I was not so astute about. The woman who works in the cafeteria at my son's school had a daughter with Type I Diabetes. Unfortunately, the daughter has since passed away. I believe she would be in her early 40s by now. October is particularly hard for the mother because her daughter passed on Halloween. Nonetheless, yesterday she had us decorating up a storm in the cafeteria for the kids to enjoy this month.
School has been in session for about 6 weeks and I have been volunteering for at least a month now. Throughout this month we have shared small talk that gradually leads into personal short stories. She has shared with me several stories of her daughter. Mostly good. All the little quirks she had and the funny things she would say or do. She also talks about the dog she inherited from her daughter. This lunch lady has seen so much trouble in her life, and yet every time I show up, there she is with a smile on her face and a friendly greeting.
In the short month or so I have been working with her and getting to know her she has taught me so much. I also enjoy the fact that she is not judgemental or insensitive to me about any of the limitations I have or special requirements that may be necessary.
I look at this now as a way God is walking me through this, if not carrying me. I may not always take notice, but he is sending down subtle signs here, there, and everywhere that, no-matter-what, we are all going to be OK. That, in its own right, gives me peace and puts a smile on my face. I feel horrible today, but I feel taken care of and watched over as well. That makes the pain a little easier to take.
I do have to note my son goes to a Catholic school so every Thursday morning they have mass as well as complete their catechism requirements during school hours. The other day he came home from school and told me he was so happy to learn that I will not be sick in heaven. "In heaven, everyone is young and healthy. At their best." he said with a beaming smile. To that, all I could respond was "You're absolutely right." with a big return hug and an equally beaming smile.
Monday, May 7, 2012
Getting Back To Life
Summer is coming and I am enjoying the weather we are having. I live in southeastern New Mexico near the Pecos River. As a matter of fact, for the desert, we actually have a lot of water in this part of New Mexico. I always loved spending my summer days and nights at the river. I have such fond memories of outdoors in the summer.
The past few years have taken me away from those memories. I have been going through tests and diagnoses for the past 9 years almost consistently. Having diabetes slowed me down a lot. In the beginning, I was an avid runner. That coupled with the honeymoon phase of diabetes (along with the unknown at the time that I am unable to properly absorb nutrients) lead to a lot of low blood sugars. I began to avoid activities beyond my daily runs. Once I was put on an insulin pump, swimming became such a challenge, I avoided it completely.
For those of you who don't know, insulin pumps deliver fast acting insulin. There is not a maker of water proof (that you can fully submerge) insulin pumps. This means, when you get into the shower or go swimming, you must detach your pump. This is ok for a short period of time, but if you plan on being in a pool for longer than 20 minutes you run into the challenge of not receiving insulin. This will lead to high blood sugar levels within a couple of hours. Low blood sugars as well as high blood sugars should be avoided. So what do you do? Get out every 20 minutes to connect and give yourself tiny doses as the day goes on? Then you run into the challenge of having your pump/ insulin in high temperatures which can render insulin useless. My thought, take an ice chest (you'll want food and drinks anyway) and a Ziploc bag and stick your pump in the ice chest while you swim?
I also have a connective tissue disease. I have trouble with high temperatures. Temperature extremes hot or cold. Most people get uncomfortable when they are hot or cold. Minor adjustments to clothing or activity usually can help. For myself, it is a complete intolerance. My body will get very exhausted trying to regulate itself. In cold, I am in a lot of pain. In heat I tend to get very bad headaches, rashes, and become very weak. It seems no matter how much water I drink, it is never enough when I am overheated. Add to that photosensitivity that comes with connective tissue diseases, and a day at the river sounds out of the question.
Or so I thought........I have been learning to adjust small things in my life to accommodate my limitations thus allowing me to join the real world a little more often. Although it is easier and much more comfortable to stay at home where everything I need is at hand, I want to stretch out every now and then. I would like to come out of my cave in the summer. With so much at our fingertips these days, like Facebook, I am bombarded with images of people living the life I used to live and I miss it so much. BUT change is inevitable, even for the healthy, so accept it, grow from it, learn to love it.
Here is my challenge for you. I am the only person I personally know with these issues. I have no one to turn to with questions or for advice. I am determined to take my son to the river this summer. A full day. A true southeastern New Mexico, small town fun summer day. That means hitting the river early, packing plenty of food and drinks, and enjoying every second we can in and out of the water. I can take an ice chest with almond milk and my protein shake powder (a vegan mix with tons of nutrients), plenty of water, a little fruit, and some nuts for sustained energy and hydration with no fear of contamination or digestive complications. I can pack all of my pills (every few hours I have some form of medication that is needed for one condition or the other). I will wear sunscreen and pack extra, along with a hat and sunglasses....possibly even an umbrella. Maybe a Tupperware-type container rather than a plastic baggie for my pump to go in the ice chest while I jump in the water. Plenty of bug spray (do all diabetics get eaten up compared to their counterparts? I do). What else? Does anyone have suggestions?
I am sure there are insulin pump wearing diabetics who are surfers and river rats. I am sure there are people with lupus who enjoy outdoor activities despite stamina and weather related frustrations. These are the two main illnesses holding me back for this particular activity. I will not just let life pass me by. I will not watch while everyone enjoys life. I will find a way to incorporate the things I love into my life, limitations and all. I will find new passions and hobbies that are more conducive to my current life. I can, I will.
Will you help me?
Someday you may need help. I will gladly be that person that holds your hand and walks you through your unknowns; granted I have the experience to offer. I will happily be the person that helps you go out of your comfort zone in the name of happiness and fulfillment.
Let's all find a way to quit hiding from our fears and avoiding things we once loved. Even as a healthy individual, we all lose things as we age that we once enjoyed. It is not impossible to maintain these things with a few adjustments.
The past few years have taken me away from those memories. I have been going through tests and diagnoses for the past 9 years almost consistently. Having diabetes slowed me down a lot. In the beginning, I was an avid runner. That coupled with the honeymoon phase of diabetes (along with the unknown at the time that I am unable to properly absorb nutrients) lead to a lot of low blood sugars. I began to avoid activities beyond my daily runs. Once I was put on an insulin pump, swimming became such a challenge, I avoided it completely.
For those of you who don't know, insulin pumps deliver fast acting insulin. There is not a maker of water proof (that you can fully submerge) insulin pumps. This means, when you get into the shower or go swimming, you must detach your pump. This is ok for a short period of time, but if you plan on being in a pool for longer than 20 minutes you run into the challenge of not receiving insulin. This will lead to high blood sugar levels within a couple of hours. Low blood sugars as well as high blood sugars should be avoided. So what do you do? Get out every 20 minutes to connect and give yourself tiny doses as the day goes on? Then you run into the challenge of having your pump/ insulin in high temperatures which can render insulin useless. My thought, take an ice chest (you'll want food and drinks anyway) and a Ziploc bag and stick your pump in the ice chest while you swim?
I also have a connective tissue disease. I have trouble with high temperatures. Temperature extremes hot or cold. Most people get uncomfortable when they are hot or cold. Minor adjustments to clothing or activity usually can help. For myself, it is a complete intolerance. My body will get very exhausted trying to regulate itself. In cold, I am in a lot of pain. In heat I tend to get very bad headaches, rashes, and become very weak. It seems no matter how much water I drink, it is never enough when I am overheated. Add to that photosensitivity that comes with connective tissue diseases, and a day at the river sounds out of the question.
Or so I thought........I have been learning to adjust small things in my life to accommodate my limitations thus allowing me to join the real world a little more often. Although it is easier and much more comfortable to stay at home where everything I need is at hand, I want to stretch out every now and then. I would like to come out of my cave in the summer. With so much at our fingertips these days, like Facebook, I am bombarded with images of people living the life I used to live and I miss it so much. BUT change is inevitable, even for the healthy, so accept it, grow from it, learn to love it.
Here is my challenge for you. I am the only person I personally know with these issues. I have no one to turn to with questions or for advice. I am determined to take my son to the river this summer. A full day. A true southeastern New Mexico, small town fun summer day. That means hitting the river early, packing plenty of food and drinks, and enjoying every second we can in and out of the water. I can take an ice chest with almond milk and my protein shake powder (a vegan mix with tons of nutrients), plenty of water, a little fruit, and some nuts for sustained energy and hydration with no fear of contamination or digestive complications. I can pack all of my pills (every few hours I have some form of medication that is needed for one condition or the other). I will wear sunscreen and pack extra, along with a hat and sunglasses....possibly even an umbrella. Maybe a Tupperware-type container rather than a plastic baggie for my pump to go in the ice chest while I jump in the water. Plenty of bug spray (do all diabetics get eaten up compared to their counterparts? I do). What else? Does anyone have suggestions?
I am sure there are insulin pump wearing diabetics who are surfers and river rats. I am sure there are people with lupus who enjoy outdoor activities despite stamina and weather related frustrations. These are the two main illnesses holding me back for this particular activity. I will not just let life pass me by. I will not watch while everyone enjoys life. I will find a way to incorporate the things I love into my life, limitations and all. I will find new passions and hobbies that are more conducive to my current life. I can, I will.
Will you help me?
Someday you may need help. I will gladly be that person that holds your hand and walks you through your unknowns; granted I have the experience to offer. I will happily be the person that helps you go out of your comfort zone in the name of happiness and fulfillment.
Let's all find a way to quit hiding from our fears and avoiding things we once loved. Even as a healthy individual, we all lose things as we age that we once enjoyed. It is not impossible to maintain these things with a few adjustments.
Monday, April 16, 2012
Juggling Act
I guess it's time for another check in. I would like to write something once a week to keep things predictable, but I have come to learn that is easier said than done. I did not set out to have a blog with constant updates of tests and procedures along with results, but that seems to be what is consuming my life these days.
Most recently I had follow up appointments with a few of my doctors. Most important would have to be the gastroenterologist. As many of my readers know, I have been dealing with numerous digestive issues for several years. This past year has been by far the most difficult. I have been on treatment for pernicious anemia, celiac disease, as well as chronic inflammatory bowel disease but I have still been plagued with symptoms. My doctor decided to order a gastric emptying study. I assumed this would come back with nothing because the majority of my pain and discomfort are in my lower abdomen. Out of sheer desperation for relief and lack of motivation to argue, I agreed to the test.
The next day I went to our local hospital, fasting. I was feed one radio-active scrambled egg. I was laid on a table, and x-rays were taking every minute for the next 90 minutes to follow the egg through my stomach. 2 weeks later, I am laying in bed with my husband as we are both sick from "the crud" (sinus infection from hell) and my phone rings. The nurse from my GI tells me the study came back abnormal. My stomach is functioning at less than 50%. "That's not good" she says.
Turns out, I now have been diagnosed with gastroparesis. Literally, my stomach is paralyzed. Now, this is a common complication of diabetics, which I am. The interesting part about it is, I have complained of these symptoms since I was pregnant with my son who is now 6. I have been told over and over that it sounded like I may have gastroparesis, but that only happens after decades of uncontrolled high blood sugars. So, not one doctor ever tested for it. After some research, I learn now that it is also a complication of patients with connective tissue disease, which I also have. Ggrreeaatt!
I have been on a new medication, Erythromycin, to treat this for about 5 days. I have to say I am showing signs of improvement. I will not lie. I do not enjoy this. I am not looking forward to my future. I am 29 years old and, at this point, I am completely overwhelmed with the amount of health issues I have to juggle and balance everyday.
To add to that, I have had a pain in my outer right thigh for several months. I have an insulin pump that is constantly attached to my hip so initially I thought I was rubbing my thigh with it every time I would go to the bathroom or change clothes. I ignored the pain and tried to be more conscious of how rough I was on my body. The pain never ceased and a lump started to appear. I had an MRI done. Thankfully, all that showed was some nerve inflammation. This is also due to my connective tissue disease. I will be starting physical therapy for that tomorrow. Hopefully, relief will come easy with this ailment.
In the meantime, I continue to enjoy the time I have with my family. My son just finished his spring soccer season. I must say, seeing six year olds navigate their way through a soccer game is some of the best entertainment. The pure joy and innocence of the children. It keeps you grounded and reminds you what life is really about. I have also come to terms with the idea that being a long distance runner is no longer in the cards for me so I have taken to enjoying long walks with our dogs, Roxy a 2 year old hound dog and Chewy a 9 1/2 year old chiweenie. Every morning I take them out for an hour or so and we enjoy the spring sunrise. God is amazing when you take a moment to look around and see all the beauty he has created.
Most recently I had follow up appointments with a few of my doctors. Most important would have to be the gastroenterologist. As many of my readers know, I have been dealing with numerous digestive issues for several years. This past year has been by far the most difficult. I have been on treatment for pernicious anemia, celiac disease, as well as chronic inflammatory bowel disease but I have still been plagued with symptoms. My doctor decided to order a gastric emptying study. I assumed this would come back with nothing because the majority of my pain and discomfort are in my lower abdomen. Out of sheer desperation for relief and lack of motivation to argue, I agreed to the test.
The next day I went to our local hospital, fasting. I was feed one radio-active scrambled egg. I was laid on a table, and x-rays were taking every minute for the next 90 minutes to follow the egg through my stomach. 2 weeks later, I am laying in bed with my husband as we are both sick from "the crud" (sinus infection from hell) and my phone rings. The nurse from my GI tells me the study came back abnormal. My stomach is functioning at less than 50%. "That's not good" she says.
Turns out, I now have been diagnosed with gastroparesis. Literally, my stomach is paralyzed. Now, this is a common complication of diabetics, which I am. The interesting part about it is, I have complained of these symptoms since I was pregnant with my son who is now 6. I have been told over and over that it sounded like I may have gastroparesis, but that only happens after decades of uncontrolled high blood sugars. So, not one doctor ever tested for it. After some research, I learn now that it is also a complication of patients with connective tissue disease, which I also have. Ggrreeaatt!
I have been on a new medication, Erythromycin, to treat this for about 5 days. I have to say I am showing signs of improvement. I will not lie. I do not enjoy this. I am not looking forward to my future. I am 29 years old and, at this point, I am completely overwhelmed with the amount of health issues I have to juggle and balance everyday.
To add to that, I have had a pain in my outer right thigh for several months. I have an insulin pump that is constantly attached to my hip so initially I thought I was rubbing my thigh with it every time I would go to the bathroom or change clothes. I ignored the pain and tried to be more conscious of how rough I was on my body. The pain never ceased and a lump started to appear. I had an MRI done. Thankfully, all that showed was some nerve inflammation. This is also due to my connective tissue disease. I will be starting physical therapy for that tomorrow. Hopefully, relief will come easy with this ailment.
In the meantime, I continue to enjoy the time I have with my family. My son just finished his spring soccer season. I must say, seeing six year olds navigate their way through a soccer game is some of the best entertainment. The pure joy and innocence of the children. It keeps you grounded and reminds you what life is really about. I have also come to terms with the idea that being a long distance runner is no longer in the cards for me so I have taken to enjoying long walks with our dogs, Roxy a 2 year old hound dog and Chewy a 9 1/2 year old chiweenie. Every morning I take them out for an hour or so and we enjoy the spring sunrise. God is amazing when you take a moment to look around and see all the beauty he has created.
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