Been Awhile.

I haven’t felt like writing anything for a few months. Needed a break… I had reached this phase of “acceptance” regarding being chronically ill and was dealing with it relatively well for a bit. At least I felt like I was. I’ve hit this wall again where I feel completely unsettled, scared, and hopeless. 

When I look in the mirror, or see a picture of myself, I have a hard time understanding why I’ve been kept at this weight and BMI for so long. My body feels like it is struggling to keep going.  

I like my doctors here – I really believe they have my best interests at heart and they seem fairly well versed in dysautonomia. I think since my last entry we’ve added a hematogist to my specialist list because of unexplained anemia and possible clotting issues. I also have an elevated IgA level but I decided to stop Dr. Googling that until I feel up to calling about it. 

I met with the geneticist last week and she’s running a 16 panel test to look for connective tissue disorders that may show up in DNA testing. I have to wait for some insurance mumbo jumbo to be figured out, then I can have my blood drawn, sent to Maryland, and those results will take 3-4 months after that happens. My sweet zebra testing kit:    

My GI doctor sent me for a SIBO test (small intestinal bacterial overgrowth) that just involved fasting, drinking a shot of some sugary crap, and breathing into a tube for 3 hours. The results came back – normal. SIBO can be a result of the poor gut motility that often comes with dysautonomia – because the intestines aren’t moving appropriately, bacteria can build up where it isn’t supposed to and cause malabsorption, GI discomfort, and weight loss. No dice there though. I recently got down to my lowest weight since becoming sick – 103 pounds. With a lot of work I’ve gotten back to 105/106 at max but can’t get above that no matter what. Laying on a mattress hurts my hips, ribs, and shoulders because there’s just skin between the bed and bone. I’m desperate to gain even 5-10 pounds and praying at my next GI appointment, we will have other options – I’ve done all of the tests he wanted to rule some possibilities out. 

I had a bad reaction to my medication that I take to raise my blood pressure (midodrine). My dose was increased and caused bradycardia (low heart rate), uncontrollable shaking, sweating, odd skin texture, and confusion. But hey – we got my blood pressure to normal! The side effects from that went on for a few days and I’m back on a lower dose.   

I don’t know what else. My whole point in starting this entry was actually to share something another patient with dysautonomia posted online. I liked it, can surely relate… Maybe you will too. 

 I hate the burning sensation that I get in my head,  

Mitochondria malfunction; I’m stuck in my bed.

I hate staying home when I need things from town,

My heart rate goes up and blood pressure down.

I have difficulty travelling; I can’t sit for long,

My muscles are weak when they used to be strong.

I hate being sedentary, so inactive and slow,

When I used to have energy; always on-the-go. 

I endure twitching muscles and migratory pain, 

I hate my blood pooling, the effects on my brain.

I lose clarity of thought and it slows my cognition, 

Causing muddled up sentences and word repetition. 

I hate all this resting and having to ‘pace’

I’m just as fatigued and I can’t win a race.

I still have my humour; though it’s just not as fast

And I hate my ‘quick wit’ is a thing of the past.

This list is not exhaustive of the things that I hate

But now I’m exhausted; a familiar trait.