Boston

I would like to preface this post with this:

If you have anything wrong with you that requires to see a specialist, go to Boston.

I received better care than I ever would here in Maine. Quick, and most of all, the relief of knowing I was seeing one of the most knowledgeable doctors I could.

It's going to cost you the same amount of money to go to Boston. So if you have the means to get there...please do.

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So Shawn and I drove to Boston on Wednesday the 10th. I met with my Doctor, and we went over my whole history.

At that time, he saw my Smooth Muscle Antibodies were elevated but not enough to make a sure diagnosis of Autoimmune disease. He ordered some more extensive blood work, and said depending on those I would not have to see him again for 6 months. Which was encouraging!

I went to get my bloodwork done at  the Lab. (Which was pretty neat!) They took probably 10 viles of blood from me so I felt assured that my Doc was being thorough.

At Mass General, they have a patient gateway which is an online portal where you can see test results and communications from your doctor. My Doc warned me that my test results would show up there, and he would write me an e-mail letting me know what they said (he wasn't expecting anything to show up). He also made sure that I knew I could contact him if my test results came through to me, and I started to google what they meant (I only met him once and he already knows me so well lol), and got worried, to call him so that he can let me know what they meant.

I started seeing my results come in (some as early as an HOUR after we left the hospital! That is amazing!)..and tried very hard not to use the power of internet to become an I.D...(Internet Doctor) but alas, my curiosity got the best of me, and I ended up googling what they meant.


This morning (7/12) only 2 days after my appointment, I got a call that said it was from Boston, MA....My throat immediately fell into my stomach...My research was correct.

Doc confirmed my Anti-Nuclear Antibodies (Another set of antibodies that indicate autoimmune disease) came back a pretty strong positive. He said that these antibodies sometimes show up in perfectly healthy people, so there is still a small chance that it's not autoimmune.

In order to get a more accurate diagnosis, he recommended a Liver Biopsy, which will tell us everything we need to know.

So in a couple weeks we are headed back down, to have the Liver Biopsy done. Hopefully this will be the last piece of the puzzle and we can figure out what is going on.

I am feeling a little indifferent about this. But staying positive. I am in the very best hands in Boston, I know this. I don't think I would feel this calm if I was seeing a doctor in Maine.

I know this doesn't seem like a big deal to some, but being able to write these things, and share my experience has helped me tremendously. Writing everything down helps me process what is happening. It is something that I've always done, just never in blog form.

Thank you to everyone for your continued support. I am so lucky to have you all!

My Autoimmune Journey

 Welcome to my journey. My journey through my Autoimmune diagnosis. Learning how to cope with symptoms, allow my body to heal, and figuring out just what it is that is going on.

 About a month ago I got some bloodwork back that showed antibodies for my liver were very, very high. Indicative of Autoimmune Liver Disease. I am heading to a specialist in Boston in a week or so to get more testing and treatment. 

 For a few weeks now I have felt off, but last week I was really off. Exhausted at 10am, my brain was so foggy, I had no appetite, I couldn't control my emotions, and to be honest, I was seriously and deeply depressed for the first time ever. I finally said enough was enough.

 I went back to the doctor who did a full work-up, and upon examination we found my thyroid to be very tender to the touch and inflamed. He did intensive blood work and my thyroid antibodies which are supposed to be under 35 came back at over 1000. Immediately I was diagnosed with Autoimmune Thyroditis and I am going to a specialist in Boston for this as well. 

 This all has been so hard. Every day I wake up wondering...what is going to happen to me today? Will I be tired? Will my anxiety flare up? Will my heart race all day?

 I know that I will overcome all of this. I will defeat this. I have already started reading books and doing as much research as I can to change my lifestyle to better my health. For myself, and for my family. Especially, Finn.

 I know I don't owe it to anyone to explain all of this. I know that it's deeply personal, and some don't care to even hear this. But I'm hoping that by sharing my story, my day to day, it might spread awareness to invisible diseases. And maybe, just maybe, someone, somewhere, is going through the same thing as me, or something similar, and can relate to my story. The worst thing for me right now is feeling alone. Nobody knows how I feel. Nobody knows my symptoms. Nobody knows what I am going through.

 This is my body. And I am done being held hostage to it.