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.

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/

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.

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.

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...

Thursday, September 22, 2011

Questions

September 2011

Since getting my diagnosis a few days ago, I have been endlessly researching anything and everything I can find online regarding vitamin B12 and Hashimoto's. Through my searching I have realized that I have a lot of questions for my doctor when I see him again in November. I have started a notebook dedicated to my findings and questions.

I am ready to do whatever I can to help my body and in turn feel better.

As I stated in my main narrative, the reason I started this blog was because I found another young womans blog about her journey with Hashimoto's. I found her blog the most helpful thing I have discovered on the internet thus far. It is very helpful to learn about the personal experience and journey of Hashimoto's rather than articles written online most likely by someone who has never had the disease. If you are reading my blog because you have also been diagnosed with Hashimoto's I highly recommend you read her blog as well especially because I am newly diagnosed and she has had much more experience with the disease than I have at this point in time.

http://hopeforhashimotosdisease.blogspot.com/2011/04/lets-start-and-very-beginningits-very.html


I also found a book "Hope for Hashimoto's" on Amazon that is written by Dr. Alexander Haskell, N.D. who has done a lot of work with Hashimoto's, the reviews on the book were outstanding so I ordered it and it was delivered today. I am very excited to start reading it.

http://www.amazon.com/Hope-Hashimotos-Alexander-Haskell-N-D/dp/1452854718/ref=sr_1_1?ie=UTF8&qid=1316901122&sr=8-1

I am hoping that by making specific changes to my diet I can be proactive and help my body through the disease.

After briefly looking into vitamin B12 I keep finding that the sources are red meat, chicken, and dairy products... all of which I rarely eat. Question #1 for Dr. M... Leafy greens? or meat and dairy? What can I eat to help my B12 levels? Dairy upsets my stomach and I really do not enjoy eating meat (at all), I would prefer to go without.

Also after processing the information related to Hashimoto's disease leading to hypothyroid I wonder if I should be expecting weight gain and how much? I would rather be proactive and change my eating habits to cater to that now rather than have to struggle with it later. I had a dream the other night that the doctor told me I was going to be very overweight. Having been very skinny my entire life this would be a significant change. Question #2 for Dr. M... What should I be expecting as far as weight gain?

After reading another blog and browsing some information online I have read that certain food ingredients are bad for the thyroid including soy... Question #3 for Dr. M... Are there certain things I could be avoiding that may help my thyroid?

I also realize that my upset stomach issues were not really talked about during my diagnosis appointment. Are my upset stomachs related to the B12 deficiency? Hashimoto's? or food alergies? I have read that many people with Hashimoto's have experienced intolerance to gluten and milk products. Most of my diet consists of gluten. I love love love pasta, bread, and just about any other carb I can squeeze into my diet...Question #4 for Dr. M... Were any food allergy panels done with the 16 tubes of blood I gave? If not can we please address that so I don't continue to eat foods that my body is rejecting?

November seems forever away, but I will be back to update on the status of my fatigue after a few weeks of vitamin B12 injections... maybe I will get over my fear of blood and needles after all of this :)

Tuesday, September 20, 2011

Diagnosis

September 20th 2011

I anticipated this day for a month, thinking about what my test results would be, wondering what I was even tested for with 16 tubes of blood. My biggest fear was to be told that everything came back normal. I didn't want to be back a square one, I didn't want to be dismissed, I just wanted some answers so that I could be on my way to feeling better.

As I sat down in Dr. M's office I could feel my heartbeat racing. He sifted through my chart of papers and began naming off the tests that came back normal. My heart sank and I felt like crying, but unexpectedly he came out with some things that did not come back normal. YES! ANSWERS! "Your vitamin B12 level is very low, your at a 129 and you should be up over 500"... I wasn't sure exactly what those numbers meant, but it wasn't hard to see the deficiency. He explained that this had a lot to do with my fatigue, but before I could begin to ask him questions he said that there was also something else that came back in the test. He informed me that I had Hashimoto's Thyroiditis. Huh? Hashi who? He explained that it was an autoimmune disease of my thyroid that was causing my antibodies to attack and destroy my thyroid. Due to the prevalence of thyroid disease on my fathers side of my family, I was not entirely surprised. He explained that there is no cure for Hashimoto's and informed me that it will 100% lead to hypoactive thyroid disease. I listened carefully to what he was saying to me, I wanted to remember everything so I could go home and do research. Dr. M then told me I would have to come to the office once a week for a B12 injection in order to bring my levels up quickly. He said that I should start feeling much less fatigued once my levels are brought up and once they are leveled out I would be able to be put on a tablet that goes under my tongue so I would not have to continue to receive the injections. As for the Hashimoto's there wasn't a whole lot to be done. I would have to go back in a month to have my thyroid tested again and it will have to be continuously checked. He explained that it was still testing normal because it is still functioning and the Hashimoto's had not destroyed it to an extent that would cause it to present itself in my blood work. Once your thyroid is destroyed you will be required to take medication daily in order to regulate the hormones that your thyroid once provided.

Dr. M also informed me that he received the information regarding my opthamologist appointment, however the eye doctor did not perform the requested test on my eyes. There was some misunderstanding in why I was being sent there. Despite my specific request regarding sicca syndrome, the opthamologist had given me a full eye exam as he would for autoimmune patients who are going to start medications and never tested for sicca syndrome. Dr. M asked that I call and reschedule another appointment with the eye doctor and reiterate the need for a specific test for dry eyes. 

I had never heard of Hashimoto's and knew very minimal about the thyroid gland so I couldn't really formulate any questions regarding that diagnosis. However, I did ask where vitamin B12 is found. Dr. M said that it could be found in leafy greens and I said "OK well I definitely don't have a problem eating that, I just wanted to ask because I don't eat a lot of meats". He gave me a lab form to go back for more blood work on my thyroid in a month and I scheduled another appointment to see him again on November 11.

I left the office feeling very happy that I had answers. Though it wasn't good news, I was glad to hear it. I'm not crazy... I have felt crappy for reasons. Now I could be on the road to feeling better. Things felt like they were looking up and I took a big sigh of relief.