Keishalei's Blog

Since this is my 1st Blog, I thought I'd share a little bit about me and my "off-colored" sense of humor (some people use the words morbid, inappropriate, shocking, wonderful, etc...) to help everyone understand why I might say things.
I was diagnosed with Celiac Disease in 2013. It was a long road of mis-diagnosis and frustration. I just happened to get an amazing Gastro Dr because he was the one on call on a particularly awful trip to the local ER. My Dr himself has Celiac and is a very good support to me. Unfortunately my current story is all related to what seems to be an under-charted area.
I am often the person that, when jokes are rolling out and everyone is playing off each other, "goes there"! You know when there's that unspoken line of comfortable joke intensity that seems to be set by average people, and there's that one person who says the line people were thinking, but would never say...that's me! The most spoken phrase about me is "very Keisha". I believe that because I am above average that my sense of humor must be too. This sense of humor has taken most of the medical professionals taking care of me by surprise. I can take things seriously when needed, but usually there is a silver-lining to everything and I like to point that out

Celiac.com Sponsor (A13):
 

Shoulder Pain!
The kind of shoulder pain that wakes you up at night because you've drooled yourself into a position that has made your hand more like a "stranger". The burning and prickly feeling have become a familiar friend to me and wakes me up more than my cat who can't decide whether he wants his huge butt on my pillow or my husbands (he has the hardest choices in life. BE an ass%$@#, DON'T be an ass%$@#. To be honest he takes after me. I struggle with the same issue daily). I have been dealing with this issue for 17 years and have tried various treatments, but usually each quits working as effectively over time. I stopped cortisone injections about 2 years ago and just put the pain and issues on the back burner while I tried to figure out what was going on with my guts. You see I am NOT independently wealthy and can only afford to treat one thing at a time. It's like my bank account wants to be a triage nurse. So my husband has been getting on me to get my shoulders looked at again. I was like "yeah, I'll call tomorrow...or next month, whatever" Well the pain as become constant and has affected my "extra curricular activities" with the hubby. I'll be honest here. That is the only reason I even made the appointment. When a person's sex life if affected, that will usually get your booty into that Dr. It's fun and awesome and shouldn't be painful or difficult right?!? So I finally go in and what is unfolding is stuff I don't understand.

Weight Gain...yes you read that right...GAIN!
During the last 2 months alone I have gained 21 pounds. 21 POUNDS!! Making my total weight gain since my dx 42 pounds! I eat better than every single person I know. I have a very active toddler that keeps me on my feet when I'm not working. I get to the gym at least 2 days a week (I strive for 3 but that doesn't always happen thanks to my overwhelming exhaustion that I am experiencing for the 1st time ever in my life). I have been more active over the last 2 months compared to the 2 months before that. How does this happen? Why does this happen? Thyroid issues? Most likely since it is enlarged and has been painful from time to time. Do I just forget everything I know and quit eating all together. Because EVERY SINGLE Dr I have talked to seems to think I just have a eating problem, then are shocked when I tell them what my meals consist of. I get puzzled looks and mostly looks of disbelief.
[A little background for all the nosy people, like me, who want to understand the 4 W's - My mother had her Thyroid removed because it was so large it started to effect her breathing. Up until that point, like myself, her blood tests for her Thyroid always came back 'within normal range' and they didn't see any reason to treat it until it grew and grew. They still don't know what caused it, but now hers in gone and she is on replacement meds and doing well]
The only thing I can think of is that I need to find a Endo Dr that will listen to me when I say "Ok. But what if 'within normal range' isn't normal for MY body?" The last Dr I said that to asked me if I had been to medical school, I replied no, he proceeded to tell me that I should probably listen to someone who has studied it. I then asked if he received a 'C' in medical school? Well needless to say, we are no longer seeing each other!

So What Now?
Here's where I am. I made the appointment to see an Ortho for my shoulder. On the x-ray there was a weird and concerning dark spot on the upper part of my right humerus. This is NOT the reason he was taking the x-ray, it just happened to be on it. This is why I say "this is how the story always starts". He asked if I had recently broke my arm? No. Ever broke my arm? No. The spot looked like a large tear drop, a very weird one that reminded me of a prison tattoo. You know the one's on the face that let everyone know that they can't adult, because they make bad life choices. (fyi I have nothing against tattoos and all that...blah blah blah. If you get easily offended and can't just enjoy humor for what it is, then MY blog probably isn't the right place for you, bye-bye). He had already ordered an MRI for my left shoulder, because that's the one that has been hurting me the most. Well you know how insurance is, If they approved a LEFT shoulder MRI, then we have to get another approval for the RIGHT side. So I had my left side done. I am waiting to get the one on my right side, where this spot has appeared.

What's One To Do While Waiting?
I decided to google celiac and bone disorders. Not the most uplifting results. If you want to get depressed really quick, I suggest doing that! It's sure to do the job. I have not attended medical school, as was pointed out earlier by my EX-doctor, but I have been in the medical field for about 10 years in various roles. I have learned that I am my best chance at getting the right diagnosis. I am my very best advocate. It is perfectly fine to seek out a Dr that is on the same page as me about MY body and what I am feeling/experiencing. I am currently on the hunt for an endocrinologist in my general area that is knowledgeable about Celiac patients and the uniqueness of our bodies, or at the very least a smart Dr who isn't afraid to learn more to help me and be a member of my team. My gut tells me that all my issues are somehow connected. To what extent? I don't know for sure yet. But I'll be damned if I'm going to let anyone stand in my way of finding out. I want my body and playful sex life back!!