I walked into the doctors office today and upon checking in the receptionist handed me a lab form. Blood work again... as if I wasn't completely over being a pin cushion... Anyway I met with the doctor first. When he asked me how the B12 injections were working I explained my situation to him. They most definitely made a difference, but I felt like I needed more... like one injection a week was simply not lasting long enough. I also explained that after missing the one injection due to a recent snow storm causing mass power outages, I was back to feeling absolutely exhausted, to the point I was at when I had first met him. Convienently enough the lab sheet I was greeted with was to test my B12 levels. Dr M. exlpained that by now the B12 should have stored up in my body, however from the sounds of it, it seems that the B12 is not being absorbed and that is why the injections are only making short term energy differences.
The solution = see a G.I. doctor and continue to recieve weekly B12 injections. When B12 isn't being absorbed it is a sign that there is something wrong digestively (because that is where the absorption occurs). I was referred to a G.I. doctor and was also given B12 tablets. When I start to feel the weekly injections wear off, I am to take a B12 tablet everyday until I go for the next injection.
The earliest i could get into the G.I. doctor was for the first week of December, and I do not go back to see Dr. M until January. Until then I will continue to force feed my body with B12.
Thursday, November 10, 2011
Friday, November 4, 2011
B12 Injections
I have been recieveing B12 injections weekly. Though it is a bit annoying to have to drive to my doctor's office once a week to get them it has made a huge difference. After about the second injection I began to feel a huge difference in my energy level. For the first time in a really long time I felt the desire to actually go out (my friends were shocked). It hit me how terrible I had been feeling once I realized what it felt like to feel normal. However, after a few more weeks of injections I began to recognize a pattern. It felt as though the energy I had was only lasting a few days. I get the injection on Wednesday, feel energy for the weekend, but come Monday I was back to feeling tired. Not as tired as I had felt prior to the start of the injections, but nonetheless I was still feeling tired.
Unfortunately on October 29th Connecticut was slammed with a snow storm that knocked out power for over 800,000 people causing me to miss my weekly injection. It wasn't long after the missed injection that I began to feel just as exhausted as I had felt prior to the start of the injections. As I said I didn't realize how absolutely terrible I felt until I actually started to feel better... I had the realization again once I started to feel absolutely terrible again :( I decided to put off the injection since I was going to see Dr. M for an appointment that following week.
Unfortunately on October 29th Connecticut was slammed with a snow storm that knocked out power for over 800,000 people causing me to miss my weekly injection. It wasn't long after the missed injection that I began to feel just as exhausted as I had felt prior to the start of the injections. As I said I didn't realize how absolutely terrible I felt until I actually started to feel better... I had the realization again once I started to feel absolutely terrible again :( I decided to put off the injection since I was going to see Dr. M for an appointment that following week.
Tuesday, September 27, 2011
APRN visit #3
After waking up this morning with absolutely no energy and feeling like complete crap I decided to call out of my internship and call the doctor. I changed my doctors appointment so I could get in today. I have barely been eating because everything upsets my stomach, I had toast for dinner last night and toast again for breakfast/lunch. After taking a hot shower I found myself completely exhausted and needing to lay back in bed for a bit. I knew the exhaustion was getting worse due to the fact that I was barely eating, but I managed to get myself ready and get down to the doctor's office.
After meeting with the nurse and telling her about why I was there I was asked if I would mind if a student in nursing school met with me as well (being a student and intern myself I had no issues with it and happily agreed). The student came in shortly after and I explained myself again, she then left and the APRN came in along with the student... after explaining myself for a third time I was almost in tears having to talk about how terrible I was feeling and how frustrated I was. The APRN informed me of the tests I would have done and then paused briefly and asked me if I was feeling depressed. I immediately began to cry as I had been on the verge of tears the entire time. I explained that I wasn't sure I felt depressed but most definitely felt frustrated and completely overwhelmed. She urged me to monitor those feelings and call her if I felt I needed to talk to someone as she would provide me with some options.
The nurse came back into the room and informed me on how I was going to give a stool sample. Yup a stool sample. Wonderful. I now have what looks like a potty chair and yes I have to transfer the stool sample from the bucket to two separate containers and then immediately drive it to the emergency room of the hospital and hand it to someone. This very unsettling process is being done to check for any bacterial infections.
I then went down the hall to get blood drawn (yet again), this time for Celiac disease. I realized as soon as I sat down that my fear of needles had not gotten any better through all of this. The phlebotomist had some difficulty with my arm but managed to get one tube of blood before my body just stopped giving. She took the needle out because I had started to bruise rather quickly. She then decided to use a pediatric needle in the top of my hand. I continued to look in the opposite direction and concentrated on my breathing. No blood... I immediately started to bruise and she took the needle out. She wasn't willing to continue torturing me and said that she would send the one tube in and hopefully it would be enough. If not I will be required to drink plenty of water and come back again. I am praying that the one tube is enough... I again have anxiety over the whole needle difficulties and am in tears walking to my car... I hate this!
Hopefully I will have the Celiac results by the end of the week and the bacterial results early next week. If both come back normal I will then be referred to a GI doctor... how many doctors will I have by the time this is sorted out?
Tomorrow is my second B12 injection and I am hoping that I will start to feel the effects.
After meeting with the nurse and telling her about why I was there I was asked if I would mind if a student in nursing school met with me as well (being a student and intern myself I had no issues with it and happily agreed). The student came in shortly after and I explained myself again, she then left and the APRN came in along with the student... after explaining myself for a third time I was almost in tears having to talk about how terrible I was feeling and how frustrated I was. The APRN informed me of the tests I would have done and then paused briefly and asked me if I was feeling depressed. I immediately began to cry as I had been on the verge of tears the entire time. I explained that I wasn't sure I felt depressed but most definitely felt frustrated and completely overwhelmed. She urged me to monitor those feelings and call her if I felt I needed to talk to someone as she would provide me with some options.
The nurse came back into the room and informed me on how I was going to give a stool sample. Yup a stool sample. Wonderful. I now have what looks like a potty chair and yes I have to transfer the stool sample from the bucket to two separate containers and then immediately drive it to the emergency room of the hospital and hand it to someone. This very unsettling process is being done to check for any bacterial infections.
I then went down the hall to get blood drawn (yet again), this time for Celiac disease. I realized as soon as I sat down that my fear of needles had not gotten any better through all of this. The phlebotomist had some difficulty with my arm but managed to get one tube of blood before my body just stopped giving. She took the needle out because I had started to bruise rather quickly. She then decided to use a pediatric needle in the top of my hand. I continued to look in the opposite direction and concentrated on my breathing. No blood... I immediately started to bruise and she took the needle out. She wasn't willing to continue torturing me and said that she would send the one tube in and hopefully it would be enough. If not I will be required to drink plenty of water and come back again. I am praying that the one tube is enough... I again have anxiety over the whole needle difficulties and am in tears walking to my car... I hate this!
Hopefully I will have the Celiac results by the end of the week and the bacterial results early next week. If both come back normal I will then be referred to a GI doctor... how many doctors will I have by the time this is sorted out?
Tomorrow is my second B12 injection and I am hoping that I will start to feel the effects.
Understanding the Struggles
I hate to post the struggles of people with autoimmune disorders because I don't want to seem like a negative person, but I think it's important for people to understand what these people go through on a daily basis. I have been experiencing a lot of hidden frustration the past 6 months due to my fatigue. Lately it has been so bad that it's causing me emotional distress as well. Let's take yesterday for example:
I woke up first thing in the morning to get ready for doctor 1 of 3 this week. My appointment went well (other than the ignorance of the doctor hurting my feelings), I stopped at Dunkin Donuts to grab a coffee and a donut before heading to work. By the time I got to work upset stomach number 1 of the day had kicked in (which I won't explain in detail). After making my stop at the bathroom I no longer had any desire to eat my favorite donut (chocolate frosted), so I put it aside and started to work. It wasn't long before the girls in the office started to discuss what we should order for lunch. Though I still felt sick to my stomach I knew I had to eat something so I reluctantly ordered a calzone. In the mean time I was so annoyed at the fact that I felt so sick that I decided to call Dr. M's office to talk about obtaining a copy of my blood test results with hopes of determining whether any food allergies had been tested out of my 16 tubes of blood. The receptionist agreed to mail the results to me but as soon as I hung up I got to thinking about my next appointment... If I receive these blood results and there is no sign of a food allergy test, I'm going to have to wait until November to discuss it with Dr. M. Though that doesn't seem like a terribly long period of time, it is when you live all day every day with nausea and an upset stomach it feels like forever. So I decided to call the receptionist back to see if she would be able to tell me whether or not I had any food allergy tests done and if not I wanted to know if it was OK for me to go see my primary care office to get that done ASAP rather than waiting until November. Once I was informed that no food allergy testing was done I decided to call and schedule and appointment with my primary office. Lunch was delivered and after taking a few bites my upset stomach was screaming at me to stop. So I boxed the food back up and decided I would wait until the feeling passed before I attempted to eat anymore.
I look forward to my appointment with the APRN this week and hope that she can help me. Meanwhile I continue to work for the day and other than feeling nauseous I felt OK. I made it through a full day at work (with a donut and a calzone on my desk) but as soon as I got into the car to drive home I felt the fatigue hit me like a ton of bricks.
When I got home I felt so exhausted and so nauseous that I had to lay down out of fear that I might throw up if I didn't. Well... laying down resulted in falling asleep for a solid three hours. When I woke up I laid there thinking about all the things I needed to get done before I went back to bed for the night. Throw a load of laundry in, eat something, send my advisor an e-mail regarding the issues I am having with my field placement, and read an overwhelming amount of material for class on Wednesday. I knew I had to do these things but I just physically could not get myself to get up. I still feel exhausted, I just want to lay here, I wish I had someone here to just throw my laundry in the wash for me and get my computer and reading materials that are literally right across the room. I know I need to eat so I figure I'll start there. What should I eat? Well I'm afraid to eat anything at this point because I am afraid to feel sick again and again and again. I wish I knew what was causing it. I know I should try to eat something healthy, maybe something with no soy or gluten, but there is nothing in the house right now that would enable to me to do that. I could go to the grocery store, but that requires much more energy than I have, and I would still have to come home and prepare it. Extremely frustrated I decide to eat toast for dinner. I put my laundry in the wash and sent out the e-mail I needed to send. I started to feel accomplished that I at least got these things done. I decide to keep my reading for tomorrow night.
As I get back into bed disappointed with myself for not doing my reading I started to cry. I'm not sad, but frustrated. I have always been such an ambitious person, a go getter. I am not lazy, I want to get things done, but I feel like I can't. I am at a point where I am afraid to eat anything, I can barely do the simple every day tasks that I used to, and I feel like no one understands at all. I feel alone even though I know I am not because I have the most amazing friends and family that anyone could ask for. I just don't know how to explain how I am feeling and the frustration over the simplest things. I dread going to bed because I know that when I get up in the morning I am not going to want to carry out my day. I feel alone so I cry.
I am not terribly sick and I do not want anyone to feel bad for me. I am a very strong and resilient person and I will get through these rough patches. I guess what I want is for people to understand that that though people may not be visibly sick or in pain, the struggles are still there and they still affect my life a great deal. I now have to think about things that I never had to before, I have to pick and choose what I can do for the day because at this point I can no longer do everything I used to be able to do, and I have to reconsider all of the food and drink choices I make. It doesn't seem so bad, but if you don't have to do it thats why it doesn't seem so bad. My heart goes out to everyone in the world who suffers from any illness. I have what you could consider "minor" struggles and I am having a difficult time both physically and emotionally, I can only imagine what it must be like for the people who live in pain everyday or in terrible sickness.
**I found this article in an on-line Hashimoto's support group - though my situation is not as severe as the girl who wrote this I think it is a wonderful explanation of what it is like to live life sick and exhausted, it helps me to realize that the feelings I am going through right now are warranted. Please take the time to read it.**
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
I woke up first thing in the morning to get ready for doctor 1 of 3 this week. My appointment went well (other than the ignorance of the doctor hurting my feelings), I stopped at Dunkin Donuts to grab a coffee and a donut before heading to work. By the time I got to work upset stomach number 1 of the day had kicked in (which I won't explain in detail). After making my stop at the bathroom I no longer had any desire to eat my favorite donut (chocolate frosted), so I put it aside and started to work. It wasn't long before the girls in the office started to discuss what we should order for lunch. Though I still felt sick to my stomach I knew I had to eat something so I reluctantly ordered a calzone. In the mean time I was so annoyed at the fact that I felt so sick that I decided to call Dr. M's office to talk about obtaining a copy of my blood test results with hopes of determining whether any food allergies had been tested out of my 16 tubes of blood. The receptionist agreed to mail the results to me but as soon as I hung up I got to thinking about my next appointment... If I receive these blood results and there is no sign of a food allergy test, I'm going to have to wait until November to discuss it with Dr. M. Though that doesn't seem like a terribly long period of time, it is when you live all day every day with nausea and an upset stomach it feels like forever. So I decided to call the receptionist back to see if she would be able to tell me whether or not I had any food allergy tests done and if not I wanted to know if it was OK for me to go see my primary care office to get that done ASAP rather than waiting until November. Once I was informed that no food allergy testing was done I decided to call and schedule and appointment with my primary office. Lunch was delivered and after taking a few bites my upset stomach was screaming at me to stop. So I boxed the food back up and decided I would wait until the feeling passed before I attempted to eat anymore.
I look forward to my appointment with the APRN this week and hope that she can help me. Meanwhile I continue to work for the day and other than feeling nauseous I felt OK. I made it through a full day at work (with a donut and a calzone on my desk) but as soon as I got into the car to drive home I felt the fatigue hit me like a ton of bricks.
When I got home I felt so exhausted and so nauseous that I had to lay down out of fear that I might throw up if I didn't. Well... laying down resulted in falling asleep for a solid three hours. When I woke up I laid there thinking about all the things I needed to get done before I went back to bed for the night. Throw a load of laundry in, eat something, send my advisor an e-mail regarding the issues I am having with my field placement, and read an overwhelming amount of material for class on Wednesday. I knew I had to do these things but I just physically could not get myself to get up. I still feel exhausted, I just want to lay here, I wish I had someone here to just throw my laundry in the wash for me and get my computer and reading materials that are literally right across the room. I know I need to eat so I figure I'll start there. What should I eat? Well I'm afraid to eat anything at this point because I am afraid to feel sick again and again and again. I wish I knew what was causing it. I know I should try to eat something healthy, maybe something with no soy or gluten, but there is nothing in the house right now that would enable to me to do that. I could go to the grocery store, but that requires much more energy than I have, and I would still have to come home and prepare it. Extremely frustrated I decide to eat toast for dinner. I put my laundry in the wash and sent out the e-mail I needed to send. I started to feel accomplished that I at least got these things done. I decide to keep my reading for tomorrow night.
As I get back into bed disappointed with myself for not doing my reading I started to cry. I'm not sad, but frustrated. I have always been such an ambitious person, a go getter. I am not lazy, I want to get things done, but I feel like I can't. I am at a point where I am afraid to eat anything, I can barely do the simple every day tasks that I used to, and I feel like no one understands at all. I feel alone even though I know I am not because I have the most amazing friends and family that anyone could ask for. I just don't know how to explain how I am feeling and the frustration over the simplest things. I dread going to bed because I know that when I get up in the morning I am not going to want to carry out my day. I feel alone so I cry.
I am not terribly sick and I do not want anyone to feel bad for me. I am a very strong and resilient person and I will get through these rough patches. I guess what I want is for people to understand that that though people may not be visibly sick or in pain, the struggles are still there and they still affect my life a great deal. I now have to think about things that I never had to before, I have to pick and choose what I can do for the day because at this point I can no longer do everything I used to be able to do, and I have to reconsider all of the food and drink choices I make. It doesn't seem so bad, but if you don't have to do it thats why it doesn't seem so bad. My heart goes out to everyone in the world who suffers from any illness. I have what you could consider "minor" struggles and I am having a difficult time both physically and emotionally, I can only imagine what it must be like for the people who live in pain everyday or in terrible sickness.
**I found this article in an on-line Hashimoto's support group - though my situation is not as severe as the girl who wrote this I think it is a wonderful explanation of what it is like to live life sick and exhausted, it helps me to realize that the feelings I am going through right now are warranted. Please take the time to read it.**
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Monday, September 26, 2011
Fatigue
I hate to talk about the negative, but I think it is important for anyone to understand what a person goes through with Hashi's to hear the simple daily struggles. I also hope that by posting about some of the bad moments it will help other people reading who may have Hashimoto's by normalizing their symptom struggles.
After a morning which consisted of yet another doctor appointment and many phone calls to various doctor's offices, I spent the day at work (I have a relaxing job, I sit the majority of the day while at work). I got home after work, felt fatigued, my stomach felt absolutely terrible, and laying down resulted in falling asleep for 3 hours (this is a daily occurrence). Though it doesn't seem so bad.
After a morning which consisted of yet another doctor appointment and many phone calls to various doctor's offices, I spent the day at work (I have a relaxing job, I sit the majority of the day while at work). I got home after work, felt fatigued, my stomach felt absolutely terrible, and laying down resulted in falling asleep for 3 hours (this is a daily occurrence). Though it doesn't seem so bad.
Opthamologist Round #2
I had my second opthamologist appointment today to be checked for Sjogren's syndrome (aka "sicca syndrome"). I was thankful that I wasn't charged another co-pay at the mistake of their office and I was also happy to hear that I do not have Sjogren's :)
I was however angered and annoyed at the eye doctor for his lecture on thyroid disease... "Well it's not really a disease, it's really not even a big deal at all. You will get medication that's basically like a vitamin you take every day and everything is fine". Really? Clearly you should continue your path as an eye doctor and leave the thyroid issues to the people who know what they are talking about.
Unfortunately most people with Hashimoto's also have numerous other health issues that are coexisting. After joining an on-line support group for people with Hashimoto's I have realized how much struggle is associated with it and how difficult it is for people to manage their symptoms and hormone levels, even with medication.
I am beginning to understand the frustration that many people experience when trying to find a good doctor who will take them and their symptoms seriously. Many people I talk to have gone many years experiencing the symptoms of Hashimoto's (or other autoimmune diseases) yet have been dismissed or misdiagnosed with depression/anxiety for years before they find a doctor willing to take a closer look. I am thankful to have an amazing rheumatologist that has treated my mother for many years. If you are in CT and reading this because you have Hashimoto's or think you may have some type of autoimmune disease and are looking for a good doctor please feel free to comment, I would be glad to send his office information your way... finding a good doctor is half the battle.
I contacted Dr. M's office today to request a copy of my lab results so I can see exactly what I have been tested for and what my exact results are numberwise. I also asked them to fax my results to my primary care office. I am still dealing with regular upset stomachs and can not get back to Dr.M until November but I would like to be tested for food allergies. I have an appointment scheduled with the APRN at my primary care office for Wednesday to talk about having a blood panel done for food allergies.
I was however angered and annoyed at the eye doctor for his lecture on thyroid disease... "Well it's not really a disease, it's really not even a big deal at all. You will get medication that's basically like a vitamin you take every day and everything is fine". Really? Clearly you should continue your path as an eye doctor and leave the thyroid issues to the people who know what they are talking about.
Unfortunately most people with Hashimoto's also have numerous other health issues that are coexisting. After joining an on-line support group for people with Hashimoto's I have realized how much struggle is associated with it and how difficult it is for people to manage their symptoms and hormone levels, even with medication.
I am beginning to understand the frustration that many people experience when trying to find a good doctor who will take them and their symptoms seriously. Many people I talk to have gone many years experiencing the symptoms of Hashimoto's (or other autoimmune diseases) yet have been dismissed or misdiagnosed with depression/anxiety for years before they find a doctor willing to take a closer look. I am thankful to have an amazing rheumatologist that has treated my mother for many years. If you are in CT and reading this because you have Hashimoto's or think you may have some type of autoimmune disease and are looking for a good doctor please feel free to comment, I would be glad to send his office information your way... finding a good doctor is half the battle.
I contacted Dr. M's office today to request a copy of my lab results so I can see exactly what I have been tested for and what my exact results are numberwise. I also asked them to fax my results to my primary care office. I am still dealing with regular upset stomachs and can not get back to Dr.M until November but I would like to be tested for food allergies. I have an appointment scheduled with the APRN at my primary care office for Wednesday to talk about having a blood panel done for food allergies.
Saturday, September 24, 2011
Attempt 1 at Tackling B12
Even though I'm not sure increasing my consumption of certain foods that contain B12 will even help I figured I would give it a shot. After all I don't know if my deficiency is a result of my body's inability to absorb the vitamin of the lack of foods I eat that contain B12.
So yesterday for lunch I made my first attempt at changing my eating habits. While ordering my lunch at work I decided I would try to eat chicken, so I ordered myself a buffalo chicken wrap... When I got the wrap I opened it up and cut the two boneless wings into very small pieces and even removed some knowing full well I was not going to like having the chicken in there to begin with. I wrapped it back up and took a bite...
As soon as I could taste the chicken and feel the texture I gagged and my stomach completely turned. I couldn't even eat the rest. I hated it. Imagine a food that disgusts you, something you would never choose to eat... now imagine putting it in your mouth and chewing it... gross right? That's how I felt about the chicken in my wrap. Now imagine taking everything out of your diet that you love and replacing it with the foods that gross you out... (I realize that is not necessarily what I am going to be doing, but at that point in time that was my thought process...)
I expected to dislike the chicken, I did not expect to feel sick over it, and I most definitely didn't expect the emotional reaction. The chicken experience made me realize that changing my diet is going to be much more difficult than I had anticipated. I felt really frustrated at my reaction to the chicken and tears came to my eyes, I thought to myself "how am I ever going to do this?" I held back the tears but I felt like crying. I realize that I should not be getting myself upset yet since I still have to talk to the doctor about the food questions, but I couldn't help but imagine having to change all the things I love to eat to all the things I hate to eat. I felt sad for the rest of the day and frustrated with myself. I will not give up on my attempts but I now realize how difficult my attempts may be...
So yesterday for lunch I made my first attempt at changing my eating habits. While ordering my lunch at work I decided I would try to eat chicken, so I ordered myself a buffalo chicken wrap... When I got the wrap I opened it up and cut the two boneless wings into very small pieces and even removed some knowing full well I was not going to like having the chicken in there to begin with. I wrapped it back up and took a bite...
As soon as I could taste the chicken and feel the texture I gagged and my stomach completely turned. I couldn't even eat the rest. I hated it. Imagine a food that disgusts you, something you would never choose to eat... now imagine putting it in your mouth and chewing it... gross right? That's how I felt about the chicken in my wrap. Now imagine taking everything out of your diet that you love and replacing it with the foods that gross you out... (I realize that is not necessarily what I am going to be doing, but at that point in time that was my thought process...)
I expected to dislike the chicken, I did not expect to feel sick over it, and I most definitely didn't expect the emotional reaction. The chicken experience made me realize that changing my diet is going to be much more difficult than I had anticipated. I felt really frustrated at my reaction to the chicken and tears came to my eyes, I thought to myself "how am I ever going to do this?" I held back the tears but I felt like crying. I realize that I should not be getting myself upset yet since I still have to talk to the doctor about the food questions, but I couldn't help but imagine having to change all the things I love to eat to all the things I hate to eat. I felt sad for the rest of the day and frustrated with myself. I will not give up on my attempts but I now realize how difficult my attempts may be...
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