chronic fatigue syndrome · ehlers danlos syndrome · gastroparesis

Appointments: Week of 5/21-5/27

I, thankfully, only had one appointment scheduled for this week. Today was just a “routine” physical. I say it like that because nothing is ever really routine for me. What should have taken 10 minutes tops ended up taking an hour and a half. This was my first time meeting this doctor. About two years ago I switched health centers. I used to go to the one in town, but I wasn’t treated really well there, so I switched to one a few towns away. I’m on primary care #3 there, soon to move on to #4. They have all been very wonderful, but everyone has been getting job offers at different places. I’m lucky that every one that comes in is very nice, but every time a PCP leaves, I get so anxious to meet the new one. I’m always afraid they’ll end up being like the ones I had at the other place. Or worse, actually being from the other place.

Anyways, since this was my first time meeting her, the appointment took a while longer than anticipated. I has to go through the whole “Welcome To Shelby” packet that I give to every doctor I see for the first time. She didn’t even bat an eyelash! And when she asked me what I wanted to go over during the visit…she just sat there, listened, and typed. Every time I was hesitant to continue, she encouraged me to keep talking. She was wonderful!

She diagnosed me with Chronic Fatigue Syndrome (Myalgic Encephalomyelitis). I’ve been so exhausted lately. It keeps feeling like I’m coming down with something, but I never actually come down with anything. I get so exhausted that it feels like the energy has been sucked out of every cell of my body. Sometimes I’m too tired to speak. A few nights ago I went to bed because I was to tired to talk to my mom, and I didn’t get out of bed until 12 hours later. I didn’t get out of bed until 4 yesterday afternoon because I was just SO exhausted. Have you ever seen the two episodes of The Golden Girls where Dorothy gets diagnosed with Chronic Fatigue Syndrome? It took me about 6 times seeing it to realize that maybe that is what my problem is. I’ve had tons of blood work done over the past year to figure out why I am so damn tired all of the time, but its all come back normal. Its nice to have a diagnoses, sucks that of course there’s no cure or even testing for it, but, whatever. I’m just thankful that I’m not just tired. What I experience is so much more different than being tired.

I also talked to her about my stomach issues. She’s decided to start treating me for Gastroparesis. I was given a medication that I can take during flares to help my stomach out. She said that if it doesn’t help, or if things get worse, we will look into getting a second opinion. I’m glad that she’s taking it seriously and understands why I don’t want to wait around for my GI to decide what he’s going to do.

We were even able to talk about my mobility issues and how my mobility is becoming more and more limited despite all the physical therapy I have done and continue to do. She is thinking of some things that would help, and needs some time to work on some things. There could be a new mobility aid coming into my life at some point this year. I don’t have too much information on that yet. We’ll just have to wait and see!

I’m really impressed with hos much this doctor listened to me. But, I found out that she’s leaving at the end of June, which is suuuuuper sucky. I will greatly appreciate when this whole primary care physician roulette is over. I’d kind of like to see the same one at least two times in a row.

 

 

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3 thoughts on “Appointments: Week of 5/21-5/27

  1. Man that sounds exhausting just reading about how many doctors. I really hope you find a primary willing to stick around. Or you could just follow this doctor to where ever she is going.

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