Skip to main content

When You Just Can't Push Through

No one will ever be harder on yourself than you are.

When I was diagnosed with AMPS a couple months ago I was told I needed to push through the pain. This idea was reaffirmed when I went to see the PT and OT at CHOP. This is what I have been doing. I have not missed a single class because of my health yet this year. Besides for when the Mobic did not work I have not gotten to the point where I have called my Rheumy. I have not missed a commitment or scheduled event.

I am proud of all these things but at some point the pain started getting even worse this week, something had to give. I did everything I normally do plus put some of the anti-inflammatory fancy cream on a few joints. It is homecoming weekend, I was going to push pass this flare, I had to push passed it. Two weeks ago I had decided I was going to go out this weekend, yet here I am writing this blog post instead (not that I don't enjoy blogging but...).

The past couple of mornings haven't been pretty. I have had to wait 20 minutes from the time I get up until I even attempt to get out of bed, key work being attempt. Attempt meaning I try to stand up, my legs start giving out due to a mixture of stiffness, pain, weakness, etc. I quickly sit back in bed for a couple minutes, then use furniture to support me until my steps are steady enough to support myself. By the time I get to the bathroom to take a shower I need a break, I have to rest before and after my shower. Somehow I have managed to make it to all my classes this week and the homecoming football game today.

That brings me today, I got up for the football game and my joints were BAD, not like a little pain, it was searing and there was a good amount of swelling, actually I don't know why I am using past tense there still is. Somehow with compression sleeves and braces I managed to make it through the homecoming tailgate and until halftime. I am done though, I can't push through anymore. I feel defeated. I feel like I am failing myself by not going out with all my friends, failing my doctor's instructions.
Tonight is an Ice Pack Kind of Night

Hip Update: I GRADUATED PT! Thats right, I passed all the test, range of motion, balance, and even strength!

GI/Side Effects Update: Even though Protonix (the newest PPI I am on) has made the side effects better, to the point I should be able to stay out of the ER, there is still a ton of breakthrough stomach pain. I have ran out of options besides actually seeing a GI specialist so I made an appointment to see one at the end of the month at CHOP.

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 …