Skip to main content

Week in Boston

I haven't posted in a week because I was at my youth groups international convention in Boston! It was an amazing week, and makes me sad I am a senior, so this one was my last.

My health did make being functional a bit harder and slightly less possible than when I went to last year's. Mind you last year I was just about seven weeks post op from knee surgery and had only been totally off crutches for a week. I even had to use one crutch for a day because whenever I got shoved my knee would give out.

This year while I didn't have to worry as much about my knee specifically, as since the euflexxa it is one of my better joints, I had a lot of other things to worry about. My first issue with any trip I have taken (even overnight ones) is packing, because my hips hate bending. I found the solution was to put my suitcase on my bed (such a no brainer I feel stupid for not thing of it sooner.

The bus ride was four hours of sitting, not something I can do easily, but I was able to get my own seat so I could move around and not get stiff. I also used heat on all my joints after the bus ride (actually almost every night I used heat), my heat pad was my savior. I also brought two ice things, one gel ice pack that I can strap and velcro to any joint, but could only use half the time since I only had a freezer for part of the trip. I also brought one of those blue ice bags, like the ones you see on TV shows or in cartoons. I am not usually a big fan of this but it was a life savior during the trip as it did not require the fore thought of putting into a freezer.

Medication was also annoying since I was not always able to go back to my room to get it before meals, and breakfast tended to be a couple hours after waking up. My conclusion was I need a pill box(I feel like an old woman just typing it). Any ideas on where I can get one that doesn't look AARP issued? I also started eating snacks after I got up to take my medicine with.

The biggest issue was the weather. I only had two really bad days, one was when it was pouring and the other was when it was snowing. All I could do was take Tylenol to take the edge off for a few hours, however it only provided slight relieve and would not last until I could take another dose. If I had been home on either of these days I would probably have spent mos of the day in bed, but it was not an option.

Overall I had an amazing time and try not to let my joints get in the way of my life.


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…

Left Hip Scope Surgery and Day 1 Post Op

I am home from the hospital from hip surgery number two! I probably wouldn't of stayed over night except my surgery wasn't till 3:30 pm.

The big discussion pre-op was what kind of anesthesia I should get because I got a spinal headache from the spinal block last time. My OS was still adamant that he thought I should avoid the general. I was also really scared about the general because I had been told it meant I would need to be intubated which I did not want.

When I talked to the anesthesiologist he had a very different take on the situation, he said I had a very high risk of getting a spinal headache again because I am above normal height, I am a teenage girl, and I had a spinal headache four months ago. He said if I had a general I may have of miserable night, but that would be compared to three or four miserable days if I got a spinal headache. He also used an IV only version of the anesthesia instead of gas which reduces nausea, plus the fact I do not get nausea from pain…

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…