Skip to main content

When I Feel Like I am Banging My Head Against the Wall



In the past couple months of my life I have felt like I have been trying so to get my health in order but the harder I try the worse it goes. At my last rheumatologist appointment about 2 months ago between my knee pain and lost ROM in my left hip we decided maybe it was time to try PT again.

I was ready to hit these problems head on. Prepared to make PT work. It HAD to work. The other options weren't pretty. If it didn't I would probably be sent for a knee ultrasound (that isn't the bad part, and then either Prednisone (a.k.a. Satin's Tic-Tacs) or even worse sent back to ortho. Last time I saw my ortho he told me to come back when I was ready for knee surgery.

I went to my PT evaluation hopeful. I soon found out my PT also had a hip scope for FAI. Everything seemed to be going well. I made a lovely sticker chart to keep track of ding my home exercises everyday. It had glitter! And owl stickers to go on it! What more do I need to keep me on track?
My second appointment however did not go as well. POTS was acting up, all the sudden I realized this was not going to be easy. For as much time in my life as I have spent in PT, with POTS it is a whole different ball game. From then on out things seemed to get worse at each appointment. I was only going once a week because of school plus work plus other medical stuff. My hip made a little progress but not my knees. And once my lungs started having issues all bets where off. Apparently being able to breathe really helps with PT.

So here I am, doing home exercises for the next couple weeks until my next appointment. Instead of increasing my appointments at the end of the semester we are decreasing them  because I am not physically handling PT well. I am trying so hard to push through like I have in the past but this time I am not pushing through pain, I am gasping for air and fighting with my cardio-vascular system, pushing through leads to passing out. Yet I need to find a way to keep going.

Today I had a reminder of what I was up against. I may have pushed myself too hard. I had an awards ceremony followed by volunteering for the College of Education graduation today. Which was fun but my job required me to go outside for a while, which I actually did okay during. However towards the end I was talking to my friend and the woman who was in charge of all the volunteers. I started laughing at something and before I knew it I was gasping for air, having a pre-syncope episode, and on the ground. I am pretty sure I never lost consciousness but I felt bad for the two people I was with. I think they were more freaked out than me. There I sat on the floor as I took some Midodrine for my blood pressure and albuterol to help me breath with a bag of chips. If I couldn't function in daily life how I am I supposed to conquer PT?

I know I will figure it out. I have no intentions of giving up. If I don't keep up with PT I can say goodbye to joint function so I am going to persevere. I just also need to be okay with myself if I struggle a little.

Comments

Popular posts from this blog

Feeding Tube Awareness Week Day 1

Today is the beginning of feeding tube awareness week! A year ago if you had told me I would be feeding tube dependent in less than 6 months I would be feeding tube dependent I would say that's crazy. Anyways here I am and its not super scary like one might think.


Day 1: Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.
I am tube fed because I have gastroparesis and dysautonomia.
Gastroparesis: Delayed stomach emptying, which means I can not tolerate normal amounts of food because it doesn't leave my stomach as fast as it should. The symptoms include feeling full, nausea, and vomiting (there are many others, these are just the ones I deal with the most). Gastroparesis is caused by nerves not firing and telling the stomach to empty. Due to gastroparesis I can only consume a few hundred calories a day so I receive most of them through my tube that goes into my small intestines instead…

The Swollen Wrist

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment.

I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal.

I was left with the advise to call me rheumy Monda…

Cellcept, Methotrexate, and Rituxan, Oh My!

So while it has only been 3 months since I last wrote instead of 6 months, a lot of things have happened with my health. After student teaching I refuse to be on prednisone for a little while. That didn't go so well and there was a month full of ulcers. I couldn't talk, I couldn't eat, I couldn't sleep much. I was not a happy or pleasant human being, which is all the things I hate about being on it. At this point they were running down my throat and I could not swallow. So after a month of this it was time for camp and that meant I needed to be able to talk without wanting to cry and I gave in to the steroids and have been on the highest daily dose yet ever since. Also Behcet's now seems to be the responsible disease for at least this mess.


Meanwhile my ability to swallow liquids has also struggled. Most of the time it was pretty solid but more times than I would like I cannot seem to get the coordination down and it seems to go down the wrong pipe and cause a lot …