Life with a Flare

As I prepare for an upcoming hospital stay which will hopefully go as planned and only be two days I asked a few of my chronically ill friends what are their hospital essentials. Clothes Underwear- I always bring a bunch of extra pairs and I go for pretty but with plenty of coverage because at some point during the stay you will be on a gown. (Although as I go into below still bring some hospital appropriate outfits) Sports Bra- (This one is only for those with boobs obviously) Nurses and doctors will be in your room at all hours so you will probably want to sleep in a bra. You also might have a test of procedure where you need to remove all metal so steer clear of the under wire. Comfy Pants- I go for either yoga pants or pajama pants (bonus points for fuzzy PJ pants). Even if your hospital does make you wear a gown many times you can get away with your own pants. My doctor even lets my wear my own yoga pants for endoscopies. T-Shirts- Personally I like soft closer fit...

Every 6 months I go to my PCP for an appointment (unless a problem pops up prior to that), I call it my "I am still not dead" appointment, as normal people only have to see their PCPs every two years for a physical. Today's appointment led to some great conversations. Let me start out by saying one of the things I really like about my PCP is his honesty. We started out the appointment by him saying "Your vitals aren't horrible but..." apparently my blood pressure was pretty low. This isn't uncommon for POTS patients but as far as POTS patients go I tend to run on the high side so the reading (which I don't quite remember but was 90something/60something) was low for me especially since it was the day after an infusion. Later on during the appointment we talked about what specialties are being transitioned from peds to adults. Of course my adult GI disaster was talked about. Long story short the adult GI I saw wanted to un-diagnose me with everything m...

I spend a lot of time in doctors offices waiting so I decided to make a list of things I tend to do while in them (in no particular order). Just so you know how much time I spend, in the month of July I currently have 4 appointment scheduled plus I need to schedule one with my opthamologist. 1. Catching up on school reading. I think the sole reason I was ahead of everyone in English in terms of reading was because of the shear amount of time I spent in waiting rooms. 2. Making flash cards or work on AP Bio labs. Pretty much every flash card I made over the course of senior year was made somewhere in Hospital for Special Surgery. 3. Steal my mom's iPad. The only time she lets me use her iPad is while waiting for doctors, which is more often than before, it used to be only the morning before surgery. (The first time I used it I was waiting for knee surgery) 4. Try to figure out exactly where at HSS there is cell service. I should actually make a map of the T-Mobile hotspots a...

Ok so my spring break may not of been the most exciting, as I think I spent more time at PT then anywhere else, but it was nice not to spend the entire time in bed because of pain. In fact my heat pad only came out like once, what is this craziness? PT has been going great since I stopped flaring! As of Wednesday I am doing every exercise I had to stop because of my knees during the flare, plus new exercise. I am finally done doing pillow squeezes and glute sets, I now have very few table exercises. As of next week I am down to only two PT appoints a week instead of three, which means I won't have to go before school anymore! I did do something besides PT this week, I went prom dress shopping! I found a gorgeous blue and white open back gown. I am not going to post a picture until after prom but I love it. It fit perfectly but if I gain an ounce it will be an issue or if my hips choose to swell prom night. I also have amazing shoe, they are silver stilettos ...

Ever get a compliment that you just really feel like you don't deserve? I have had a few of those lately and they seem to highlight some sort of insecurities I have. I think I already wrote about the time someone told me how well I am handling everything, but at the time I really wasn't. I was about two seconds away from a complete break down. Now even though I am doing better I think I might still feel awkward if someone said that to me. Another one I hate is when people say "Your so brave for going through this." Wait! You mean I have another choice? If I could avoid the medical mess I currently find myself in I would, but I can't. I would love to not go for blood test monthly or doctors almost weekly, and I definitely would rather not be having surgery in a month. But my body never asked permission before freaking out on me. The Last one is "You are so responsible," but truth is once again I have no choice. I really think if any other person my ...

I need a letter from a specialist signing off on a gap year program I am applying to due to the knee surgery I had last year one says to go to the other. Why is hip surgery being delayed? OS wants Rheumy's OK, please just talk already!

I hate when you someone asks you to rate your pain on a scale. It is a really hard task, I go back and forth between wondering if they think I am exaggerating to being afraid that if I don't give a high enough number they won't think its that bad. Also there are different types of pain. And when have the any of the faces that go with the chart on the wall ever properly reflected what anyone is feeling? Well I have seen this chart floating around the internet a few times so I figured I would share. It still isn't perfect but it gives examples of similar pain and much more accurately describes my feelings while in different levels of pain. A Better Pain Chart

A year ago I only owned one pair of sneakers, they where the shape-up sneaker (you know the ones that supposedly helped you tone your muscles). Well on day 1 of PT after knee surgery I was told they were off limits, since they did not teach someone who was relearning to walk how to walk properly. Normal people might have bought new sneakers then, but I did not, I just wore converse instead. Fast forward to my last day of PT, I was told converse were bad too, they were hurting my balance, in fact maybe I should just chuck all of my shoes and get a real pair of sneakers. Well I did that, for months I wore sneakers about six out of seven days a week. I missed my moccasins, uggs, and variety of flats. Shoes can make or break an outfit, no skirt looks good with sneakers.  As boots came into fashion this year I tried to ignore the whole trend, even though I desperately wanted a pair, but why buy something you will never wear? When my aunt asked me what I wante...

"Have you been tested for Lyme? Did you send your test results to a lab here or in California? You know, 30% of all test come back negative and are really positive, but this lab in California is much more reliable, they caught mine. I will tell your mother about the lab." "Have you seen a chiropractor yet? Maybe your back is causing the problems, a chiropractor could give you exercises to help." One more unsolicited piece of medical advice may just push me over the edge. After spending all day with family for my birthday, I am ready to deck someone. I know they all care and are just looking out for me, but at the same time can we talk about something else please? When someone has at least one doctor's appointment a week, chances are they really do not want to talk about anything medical related unless they bring it up. Between different doctors and PTs there are already enough opinions floating around in their heads, they do not ne...

Is heat and electricity and internet and all that fun stuff that people tend to have trouble living without in the 21st century. Yesterday my house got power back and there was nothing better I could have woken up to then a shower in my own house! My town was one of the slowest in CT to get power restored, 45% of people are still without power. I was at PT on both Wednesday and Friday, and they have half power. I have never seen anything like it before, some outlets work some don't, some lights work and some don't. There are a few buildings in the area like that, it is really insane. In medical news, Tuesday I go for what was supposed to be my last injection but now is my second. I will have to reschedule my last injection then because HSS said they would call sometime during last week but we had no power or phone so it would not get through. Unless I get a new prescription for PT I only have one week left. Besides that I am counting down the ...