061220

Got my hands x-rayed and my blood drawn for my rheumatologist appointment next month. I got the Goddess of Phlebotomy, she managed to fill 8 vials and only poked me once. That right there is a small miracle. There is only one lab in our state that does the antibody testing so it takes a while to get the results back. That’s why I’m getting it done a month before the appointment. The x-ray results will be available later today or tomorrow. The x-rays of my feet showed arthritis, so it’ll probably be in my hands too. Now I get to wait. My favorite part 😜

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The last few days have been difficult, high pain days. Had a dystonic storm on Saturday, which was an unexpected work out. In order to stop the storm, I had to take a high dose of benadryl which kicked my butt. Have been resting and trying to let my body recover.  

I haven’t been eating as well as I should and it has resulted in exacerbation of my symptoms. The stress of all that has been going on is also a factor. But I have more control over my diet then the stress. I do what I can to manage the stress levels, but there is only so much I can do in that department. However, I have control over my diet. So, I need to eat better. 

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Sometimes, keeping things balanced is just not possible and you have to choose between which crappy symptoms you want to have. That’s where I’m at today. Sadness. 

The other day, I was experiencing an electrolyte deficiency that lead to me passing out. Clearly, this isn’t a functional or safe state of being and needs to be addressed. So, I loaded up with extra sodium and potassium which got me feeling better. 

Until now. Because now I feel awful. The extra potassium has made my interstitial cystitis flare so it feels like there are knives in my bladder. I took some pyridium which helps a little. Now I just have to ride it out. 

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I had my first rheumatologist appointment yesterday via zoom. I don’t know about anyone else, but starting with new doctors is anxiety provoking for me. I have anxiety about being taken seriously and being believed. Will the doctor know anything about EDS? Then doing it over zoom on top of that made it only more anxiety provoking. 

My husband came to the rescue and got everything set up so zoom worked without any hiccups. 🥰 That made things so much better. 

The doctor was wonderful. He was knowledgeable about EDS and took my concerns seriously. I have arthritis and I want to be sure what kind it is before I begin treatment. He has ordered labs and x-rays to be done in a few month. Hoping that this pandemic will have passed by then. 

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So, I’m COVID-19 negative. That means I just have the regular, boring bronchitis I get about every year. Also means I’m able to mingle with the 2 peeps living with me and I can go back to work. 🥰 I don’t have a temp, but since I still have an occasional cough and mild shortness of breath I will be wearing a mask for the entire time I am at work. Just because it isn’t COVID-19 doesn’t mean peeps want me sharing it! 

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I hope that you guys are finding things to keep you busy in this strange time of staying home. I myself am getting a little stir crazy, but am doing my best to keep my ADHD brain from exploding. 

For those of you that don’t know, I have bronchitis and because I am a nurse I have been swabbed for COVID-19. First, I am not in any kind of medical crisis. I have some mild shortness of breath and a bit of a cough. I get bronchitis almost every year and it is likely more of the same, but I have to be sure what’s going on before I can return to work. I am still waiting on the test results and have no idea when they will come back. The labs are pretty busy right now. Long invisible lines. 

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032020

All non-essential appointments on hold. This is such a crappy thing for those with chronic illnesses. While our needs might not be urgent at the moment it is so easy for everything to pile up and create a land slide. It is essential to stay in prevention mode.  

Getting problems and symptoms managed is a challenge when the system is running as usual. Now it has become a chronic illness road block. On the one hand, we’re part of those at highest risk and don’t want to be out and about, but on the other hand we don’t want to ignore our medical problems either. 

That specialist appointment you waited 6 months for? Cancelled. It’ll be rescheduled after the crisis and guarantee there will be another 6 month wait. It’s frustrating. 

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I had a podiatrist appointment today. The podiatrist is amazing. I am so grateful for his compassion and how completely through he is. I wish more doctors were like this. Everything about his approach is completely validating which is so refreshing. As I look towards becoming an FNP, this man is my role model. This is the kind of provider that I want to be. This is the kind of patient experience I want every patient in my care to have.

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111819

Ok so my podiatrist appointment was really today. Good thing my husband keeps track of my schedule and realized I thought it was on the wrong day! I got a diagnosis of equinus which was caused by genu recurvatum caused by my EDS. What does that mean? My joints are hypermobile because of EDS. My knee bends back way further then it’s supposed to. That causes me to change my stride so that I mostly walk on the balls of my feet. This leads to muscle tension and plantar fascitis. Both of which are the cause of the pain I’m having. So I get to have foot orthotics. Yay. 😑 He wants me to use both arch support and heel lifts. Hopefully that will address the pain. He also wrote a script for a pain medication. I’m hoping that will help. There have been some days that this foot and lower leg pain is crippling. It’s good to have a direction to move in. I love my foot doctor. He is very knowledgeable and compassionate. The fact that he knows about EDS is huge. Few doctors in my area do.