Thursday, June 4, 2009

Rocky Mountain High

My POTS has been fine lately. Other than the time I ran out of my Atenolol for a couple of days, no complaints. I decided to try and see if maybe I didn't need it. Turns out I do. The Atenolol, combined with my compression tights and a diet that contains fruits and veggies as opposed to the bread and cheese I was living on.

I'm in North Carolina at the moment. I moved out of Pittsburgh once and for all on May 24th, driving though Virginia and staying overnight with a friend. I'm moving to Denver in a week to begin my MSW studies at the University of Denver. My mom, best friend, and I are driving out via I-40 through Knoxville, Nashville (stay the night), Memphis, Little Rock, Oklahoma City (stay the night), Amarillo, Albuquerque, Santa Fe (stay the night), Colorado Springs and into Denver, arriving on the 14th. Hopefully I'll nail an apartment soon after. The way the rental market in Denver is looking based on Craig's List ads, they're pretty desperate for tenants.

I'm wondering how my POTS is going to react to the elevation. I'm also going to have to go through the heinous process of finding a doctor who knows what I'm talking about.

Wednesday, March 25, 2009

Miraculous Turnaround

I'm the healthiest I've ever been in my life. No, seriously.

I got off the Paxil in December. I realized I was running out, said fuckit and put myself off of it. It was hard. It was unpleasant. It put me through a rough dark patch. But I came out of it alive. And stronger. And with more energy. Enough energy that I'm not missing some form of work every week like I was last year. It feels amazing. I honestly think that a lot of my POTS flares were due to the Paxil wearing me out. Oh, the POTS is still there. But Paxil made it so much worse.

This semester so far I have only missed one day of work due to POTS. I missed another day because of a monster cold. That's it. I've been able to come in everyday, which is a major improvement. Due to some political work issues, my job performance hasn't been the best, but the air has been cleared in that realm as well and things will hopefully be looking up in the one month I have left.

Speaking of which, I will be graduating in exactly one month from tomorrow. I've been accepted to three graduate programs. I'm in the process of deciding between the two of them and this is going to be the most difficult decision I've ever had to make in my life.

I also celebrated my two year seizure free anniversary last month. I couldn't be happier in that department.

I still get POTS symptoms. Cyanosis is such an attractive feature, as are molted legs. I don't do well standing in lines and have been known to pop a squat in public places (like a train station or an airport). I still faithfully wear my tights and won't leave the house without them. I still take my Atenolol. I still startle like a PTSD vet. My heart still struggles sometimes.

But overall, my quality of life has improved dramatically. I honestly don't know how I functioned all those years.

Monday, October 6, 2008

Wow I Fail

So, I haven't updated this thing in several months. I guess that's a good thing. Over the rest of the summer I really wasn't that symptomatic. Oh, there were days, but not as many.

I'm a member of the marching band at my university. Band camp was in mid August and consisted of 5 days of intense marching and playing. During 2007 at band camp I had a LOT of problems. I'd have to sit out entire practice sessions due to symptoms flares. This is was before I discovered the wonders of compression tights. This year to band camp I didn't have to sit out at all. There were practices where I'd have to lie down and stick my legs up in the air to get the blood out, but that was the extent of it. Performing in band really isn't an issue with me. As long as I'm continuously moving I don't have a lot of POTS problems. Standing in one place for a period of time is what gets me. So practice, especially drill setting days, are the worst for me. Thankfully my class schedule has it to where I miss the days that we normally set drill, so I just learn it as I go along the following day.

If you're interested in seeing what we as a band do, just go to youtube and look up "Pitt Band." Or you can check out of this nifty video that a fan shot of our latest halftime show, which was Guitar Hero (the song is "Through the Fire and Flames" by Dragonforce:



Lately I've been having cyclical stomach problems. They seem to get worse just before my time of the month and subside afterwards. I went to a gastroenterologist a few weeks ago to inquire about this. The doctor was a royal douchebag and was belittling my symptoms. I was this close to up and walking out of the appointment and calling him a douchebag. Towards the end of the appointment he seemed to attempting to redeam himself but not very well. A blood test indicated to that I had a slightly high liver enzyme which indicated fat in my liver, so I went in for an ultrasound the following week. The ultrasound was clean, so I guess the liver enzyme was a fluke.

The past two weeks I've been sick in one capacity or another. I finally got over everything on Wednesday. I had a cold followed by a stomach bug. The stomach bug caused me to miss an exam for a class so I had to go to student health to get a doctor's note so I can make up said exam. The doctor I saw has the most impressive bedside manner that I've seen in a long time. When he asked me for my medications I listed them off. He asked me what I took the atenolol for and I told him POTS (but in long form). He KNEW WHAT I WAS TALKING ABOUT!!! Granted, he wasn't an expert on it but he KNEW!! I seriously wanted to reach out and hug him. With all my bad crazy doctor experiences, it made my day.

Tuesday, June 17, 2008

Well, my Atenolol has yet to come in the mail, but the withdrawal effects have been really mild compared with what I was warned about by my doctor and pharmacist. I experienced some heart irregularities a few times, but that has subsided. Overall, I've been much warmer than I was on the Atenolol, can't get to sleep as easily, and I startle very easily. All of these had been pre-Atenolol phenomena with me but I didn't really appreciate it until now. Hopefully the drugs will get here soon.

Even though I have an appointment with my internist in September, I'm thinking of setting up an appointment sometime in July to discuss getting me off the Paxil. By September school, band and the internship will be in full swing and I know from experience that's definitely NOT the time to get me going through withdrawal. I ran out of Paxil once during finals week my freshman year and barely slept for 4 days. I even took a Tylenol PM in desperation one night all it did was make me feel normal as opposed to wound.

I've bought a bicycle. I normally hate cardio exercise, but bike riding is an exception. It's incredibly freeing and it's great to have some independence with my mobility as opposed to being reliant on public transit. I'm taking it easy for now and only doing short rides in flattish areas and not trying yet to scale any of Pittsburgh's epic hills

Wednesday, June 4, 2008

Running out of drugs

I ran out of Atenolol AGAIN... with the camping and things being stolen it was the farthest thing from the forefront of my mind and when I finally realized I needed some more it was too late to get it in time. So I've been out for a couple of days and today it finally hit me. I woke up way too hazy to function so I called off of work (plus it was raining and I walk roughly a mile there) and went back to bed until 4 and laid in bed on and off until 6 because anytime I sat up for longer than I minute I got extremely nauseous. Not fun.

Monday, June 2, 2008

Morning Sickness

I seem to be having bouts of morning nausea even though I KNOW I'm not pregnant. This has been going on for a couple of weeks now and is kind of strange. I keep food down usually and it subsides after maybe an hour, but that doesn't mean it's pleasant.

This is puzzling me.

Friday, May 23, 2008

POTS+Camping=Hmmm

My two week sojourn in Maine was an interesting time. We arrived with two naked weeks ahead of us with no real plan on what to do. My co-campers were most interested in doing some serious hiking, so hiking we went.

I'm horribly out of shape. I'm getting better about it, but at the time I was horribly out of shape. When you have to devote a month of your life to literally nothing but papers, exercise tends to fall by the wayside. I didn't have the time nor the energy to use one of Pitt's ten billion gyms. Plus, I hate cardiovascular exercise. Always have. Even when I was a kid and an active gymnast in the best shape of my life I hated cardio. Since my heart can barely regulate itself sitting down, it doesn't have much of a chance when movement comes into the picture.

Hiking up mountains is something of a workout. For the first few hikes I went along but the first time we tackled a trail labeled "Strenuous" I lost it. The trail was literally crazy steep stairs for 1,000 feet in the air with LADDERS. I had to stop every 10 feet. I felt like I was going to pass out. My heart was all over the place. I was being cruelly reminded with every step I took that yes, I was different. It was then that my co-campers realized I wasn't having a good time at this and told me it was OK if I wanted to sit things out. So anytime they went on a hike labeled "strenuous" (which was every time after than except for one) I gladly sat in the car watching Angel on DVD.

Being alone in the woods, or even with other people in the woods, gives you a lot of time to think. Although the trip was an overall positive experience, I experienced a lot of darkness on the trip thanks to the POTS. I felt like a weak link. I felt useless. I felt like I was raining on everyone's good time and holding everyone up. The three I was with had been working out for about a month prior to the trip, but I didn't have the time nor the desire (because I hate cardio) to join them. So here they are running up the mountains like they're nothing and I'm some out of breath dragass. Great feeling. I resented them for a while until I realized they really weren't thinking negatively of me for being slow, they don't care. That's why I'm friends with them. They treat my illness like I want it to be regarded: as though it's some minor quirk like having a twin or being left-handed. I don't wish to attract attention because of it, just live among you. And most of the time I succeed.