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.

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.

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.

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

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.

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.

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.

Ultrasound

Hey guys,

I got back from Maine a few days ago and I'll write later about those adventures. For now, I thought I'd catch up on the ultrasound, which I never wrote about.

I went to Magee Women's Hospital here in Pittsburgh (and two blocks from my apartment) for the procedure. It took place in the Breast Center. I had to remove my top and bra and put on a robe that looked as though I should be serving sushi at a Japanese restaurant. The center had soft lighting, immaculate decorations and looked very inviting and comforting. In the second waiting room after you had changed they even had free tea. I had to sit in a 3rd waiting area for about an hour before they called me back. In that time I managed to read People from cover to cover and felt as though I had lost several brain cells. Also while waiting a nurse came up to a woman near and said "miss the doctor would like to see you now." She said "They found something didn't they?" And the nurse said "Kind of... I'll let the doctor explain." That was kind of unnerving to watch... just about as bad as that time I was in the ER freshman year and heard a woman die in the triage unit I was in.

The procedure itself wasn't bad at all. Just some goop and a wand to look for things. I had felt the lump go down significantly over the days leading up to the procedure so I wasn't surprised when they couldn't find anything. So the good news is: No cancer here!

I wasn't sure whether or not to be comforted or patronized by how the hospital had gone out of their way to make the breast center over the top warm and inviting. It honestly didn't ease my nerves one bit. You're not going to trick me into thinkng that having a deadly disease is a cup of tea. Cancer is still cancer, no matter how you dress it up and all the free tea in the world doesn't change that. I've never had cancer and I hope to never experience it, but if cancer patients are anywhere near as bitter as I am when it comes to medical stuff, they'd probably feel as though their intellects had just been insulted. I also can't help but feel that a prostate cancer center for men would probably not been as over the top done as what the breast center's was. So to the breast center: save some money and just stick to the standard waiting room shtick.

Woo doctor's appointment!

I went to the gynecologist (actually she was a nurse practitioner, but whatever) about the lump. She found it and thinks it's more than likely a lymph node acting up. But, to ere on the side of caution, I have an ultrasound on Tuesday.

The funniest thing was when I called to set up my appointment, the receptionist was just going out of her way to see if I had any questions or concerns and said everything really empathically, until she said rather sternly that I couldn't bring children to the facility. I found the contrast amusing, as well as the way she just went out of her way to be sensitive and nice. Most receptionists deal with things sort of matter of factly, which doesn't bother me since I'm used to that manner and I know they deal with this shit everyday.

My mom's friend who had a pretty rough case of lymphoma said that if my lump is tender it's actually a good sign.

Senior!

Tonight (actually last night since it's now into the wee hours of the morning) I finished up my last academic act of my junior year, thus making me a senior. I'm proud and at the same time wondering where on earth all this time went.

I found a small lump under my armpit yesterday. I made an appointment for my yearly gynecological appointment because I was due for and also asked if they can look at the lump. This happens on Friday. It scared the crap out of me yesterday but now I'm not as stressed. I'm obviously pretty worried, but optimistic that it's nothing, especially considering my age (20). I read online that 80% of these lumps turn out to be nothing. However, I've also been reading about the horrible things it could be (breast cancer, lymphoma). I know the worst thing you can can possibly do to yourself is read about disease insanity online, but I just couldn't help myself.

So, wish me cysts or angry non-cancerous lymph nodes.

Summer Challenges

With the weather in Pittsburgh FINALLY getting nice (read: not raining/snowing every day, you can actually see the sun and you don't need a jacket to leave the house), comes a whole new set of POTS challenges. With warming weather, one's veins don't constrict as much, leading my blood to hang out in my legs even with compression tights most days. It's frustrating and tiring, which probably explains why I've spent most summers being extremely lazy.

Yesterday I left the house to go to another friend's house wearing shorts and a tank top. I realized that this was probably the first anyone other than my roommates has actually seen of my leg since September, when I started wearing the tights.

My semester wraps up on Wednesday evening, though for some reason I keep feeling like I'm done with nothing else to do, which is far from the truth. I still have two papers to finish and three presentations to give. I guess I'm not used to having no actual "finals" during finals week.

On April 30 my roommates and I are leaving for a two week camping trip to Maine in Acadia National Forest. I'm going to keep my contact with the outside world limited to the a couple of phone calls to my parents.

Doctor's Appointment

I went to my Internist appointment on Friday morning. All systems are pretty much a go. The Atenolol is working wonders. I still use my tights, but that's a small price to pay for being able to move and not get tired. I told him about the stones and that I have yet to set a urologist appointment. Yeah, I really need to get on that, but when you have roughly 45-50 pages of written work to do in less than a month which will dictate your grad school admission (in social work, if you get a B or better in all your core classes then you get to skip the foundation year of grad school and get "advanced standing" meaning that you'll have a master's degree in only a year).

So yeah, I'll set that up sometime this week.

However, this week (and next week) is pretty packed. I have a concert Sunday, a community meeting which I HAVE to attend for one of my papers on Monday, a final on Tuesday, a paper due on Wednesday and a paper due on Thursday. The Wednesday and Thursday papers are more or less done (I have about one more additional page for the Wednesday paper). Next week I present and turn in the paper related to that community meeting on Monday, present and turn in a paper on Tuesday, present on Wednesday and I'm basically done. I say basically because I have an extension on another paper to an as of yet undetermined date... my professor and I are going to talk about that on Tuesday.

After all this is said and done my friends and I are taking an "end of the year" trip to Maine to camp for a little while. Should be fun.

Albuquerque, Spokane and Kidney Stones

I traveled with the Women's basketball team for the first and second round games to Albuquerque. Wonderful city. Good food. Nice people. Nice Weather. It also didn't hurt that the women upset Baylor in the second round, meaning the next weekend I was out in Spokane for the Sweet 16. We didn't do so well out there against Stanford (who is currently in the women's final 4) and it decided to snow in Spokane while we were there, but it was an alright town.

Of course I had the routine POTS flareups at the airport. When you're weighed down like a pack mule, it happens. That's what the cane is there for. I tried when we were coming back from Albuquerque to not use the cane at all, but that failed about halfway through security. With all this traveling and early morning wakeup times and lack of sleep, POTS flareups were inevitable.

I came back to Pittsburgh for good (I was in town for 2 days between Albuquerque and Spokane) a week ago. All these trips and lack of foresight on my part has delayed my work on my massive end-of-semester papers, but I've figured out that as long as I write 2-3 pages on SOMETHING everyday, then I'll be fine and hopefully not pulling any all-nighters, which I despise.

So I'm in class on Tuesday when I feel a dull ache in my back. I thought it was the way I was sitting so I shift. When squirming didn't work I excused myself and walked around the building for a minute. When that didn't work, and the pain was getting so bad that I was actually wimpering in class, I called the ambulance on myself. I didn't even go to the hospital when I was hit by a CAR, just to put into perspective how badly this hurt.

Of course it took the medics a while to get there, so the campus police and first responders had to show up too. They also had to temporarily shut down traffic on 5th avenue to get me in, which I felt really bad about. By the time I got to the hospital I was screaming and crying. Of course they have to follow protocol and find a room and a nurse and take their time and blah blah blah. I was in one of those triage units with the cloth between you and next person. When they finally got a nurse, she said "I'll be with you in a minute" and disappears. I'm screaming and crying so loudly at this point that other people's relatives are looking at me funny. When the nurse wouldn't come I began screaming "HELP ME!!" It wasn't long after that that someone finally got on my case. When the tech came in to draw some blood and get a catheter in me, he was apologizing for hurting me. I was like "dude, that feels like kittens right now compared to the pain I'm in." The nurse gave me a muscle relaxant and a narcotic (Demerol) which was AMAZING. I went almost instantly from screaming crybaby to completely chilled out.

I had a CT scan to confirm what was suspected: kidney stones. Moving my stretcher to the CT room made me nauseous and I eventually lost my breakfast, but the narcotic was so damn good that I just didn't care.

The pain started up again so I was given some percocet. Once I sobered up a little bit from that I was taken home via campus police and given a prescription for some "just in case" narcotics, which I ended up filling and using.

The stone ultimately passed thank god. I should really set up the appointment with the urologist, but it always slips my mind. I have an appointment next week with the Internist for my POTS stuff.

I'm Alive

Hey guys, I'm here and alive.

I didn't update much lately because frankly there's been nothing to report on the POTS front except for a couple of minor blips. My current level of Atenolol is working well for me and the removal of the Glyset was definitely a step in the right direction. The Paxil will probably be cut out at some point, it's just a question of when is the best time to withdraw. Right now, not so much.

I had spring break last week in which I went home. Thanks to a combination of reckless behavior, a poorly planned trip, and other circumstances, I arrived to the airport to come back to Pittsburgh at 5:30 am subsisting on only 7 hours of sleep for the prior two days. Bad call. That'll make your POTS flare up like no body's business.

I've also neglected to mention that a couple of weeks ago I got hit by a cop car while walking up the street past a gas station as the cop was turning in and didn't see me. I'm alright, although I was in pain for a week or so and was on the cane for that. At least I had a better explanation then for why I was on the cane than "random neurological disorder." I ran off after I was hit because I was pissed more at being inconvenienced than anything else but not before informing the cop that I thought he was a son of a bitch. On my way home I saw the cop car and got the tag and called the police once I got home to report the incident. The cop eventually came by the apartment to apologize and to get my information. He was clearly not the brightest crayon in the box because when I gave my date of birth as 1987 he said "ok, so that makes you 19?" Nope, almost 21.

I'm in the basketball pep band here and our Men's and Women's teams have made the NCAA tournament. Our men actually won the Big East Championship, which came out of nowhere. The men are going to Denver for the first round and the women are going to Albuquerque. I'm traveling with the women. I leave on Thursday and I'll be there until Tuesday at the latest (depends on if we win the 1st round).

Atenolol's back!

I got my Atenolol in the mail yesterday I took my first redose today. This morning I woke up weak and knowing it was going to be a bad POTS day. I was on the verge of skipping class until I realized that today was proofing day here at work (I make the events calendar for a faculty and staff newspaper) and the extra 3 hours of sleep at that point would probably have just made things worse, so to class I went. I was using the cane from the get go today. I could feel the Atenolol kick in because around 10:30 I perked up a little more and my stomach started hurting. Still hurts. And I'm STILL full from a giant late dinner I had last night.

One interesting thing about being off the Atenolol is that at times I could actually taste the adrenaline in my mouth. Yeah, it really needed to be suppressed. I feel like I have slightly more energy now, but would love a nap later on today.

Well, my Atenolol STILL hasn't come in the mail, which upsets me, but thankfully I've felt no withdrawal symptoms from going off of it. Just the POTS coming back more or less. I've been having to use the cane somewhat the past week or so. My vision blurs a little easier and I'm a lot more tired. You'd think an adrenal suppressant would make me tired, but nope, just the opposite. Too much adrenaline is tiring me out and I'm back in the routine of an afternoon nap (aka, me lying down for 6 hours). Oh, life.

Some of my stomach difficulty has gone away, but a lot is still there. I'm off the Glyset which has made little impact on my life except that I don't bloat as easily. I'm still having some heartburn, though.

I seem to have escaped whatever sickness is going around. Knock on wood, I hope I can continue to.

Fascinating Article

I'm Ill, But Who Needs to Know?

Fascinating article I'm sure most of us chronically ill types can relate to. We don't want our illnesses to hold us back, we want to work, but at the same time we don't tell our employers upfront. I personally have done this. At my old job at Pizza Hut, I worked successfully for two month (it was a summer gig) and no one was any the wiser. At my current job I disclosed it about 3 months after I started working there. It's a small office and everyone's pretty cool about it.

But at the same time, I've had organizations to which I was seeking membership ask me about my health and me being stupid, I was honest and told them. I was suspicious about that question and contacted people to ensure that this wouldn't be used in a discriminatory way, and they assured me it wasn't. But guess what? It was.

So now my current position is "you are not getting my health information out of me unless your subpoena me because it's none of your business." Even then, aren't I protected under the 5th amendment in that case? So yeah, basically, legally speaking I don't have to tell you anything.

Stomach stuff and medical sexism

I'm officially out of Atenolol. Although this sucks in that now I can hardly leave the house without a cane (and let me tell you how much fun canes can be on freezing rain coated sidewalks) and I occasionally have the heart pounds, I think I've solved the problem of my stomach pain. It was the Atenolol.

How do I know? Because I haven't taken it in two days and I haven't had stomach pain in two days. The days I took half the pill I had about half as much stomach pain.

I'm still going off the Glyset. It's $65 down the drain every 3 months that doesn't really do anything for me (the last time I tried to go off of it, I went cold turkey and ended up feeling like crap. This time I'm going halfsies and I feel fine). We'll see how I feel once I'm completely off of it.

Today I was bored and watching TV when I saw the Golden Girls was so, so I flipped to it. In this episode, Dorothy is struggling with a mystery illness, especially when her first doctor dismisses it as in her head and tells her to see a psychiatrist. How many of us have heard that one before? As the episode progresses, she gets a second opinion and lands the diagnosis of Chronic Fatigue Syndrome. She's of course, incredibly relieved to have a name attached to it (as most of us are... nothing worse than knowing something's wrong and no one believing you) and goes out to a fancy restaurant with her roommates to celebrate. As they're toasting she spots the doctor who initially told her to go see a psychiatrist. Dorothy summons the courage to go over to his table and say that she actually had a diagnosis now and the he was wrong and that if had just listened to her and put some humanity back into his profession then it could've saved her a lot of heartache. She also mentions that if she were a man, then her problems might've been taken more seriously.

Now, who afflicted with a dysautonomia hasn't been through that song and dance before? What's striking to me is that this episode aired in 1989. Almost 20 years later the medical profession is struggling with the same crap: telling patients (mostly women) that it's all in their head and to go see a psychiatrist and to stop bugging them with their problems. Furthermore, many illnesses which have a majority of women as patients get the "psychological origin" diagnosis than the illnesses that mostly afflict men.

I just love how far we've come as a society.

Random Thoughts in the Library being Next to a human germ bomb

Seriously folks, if you're a sneezy mcsneezerton of a coughy mcsougherson, don't go out in public. Some of us with preexisting chronic conditions made worse by contagious illnesses can't afford to get sick.

My stomach pain nearly everytime I eat these days has gotten out of hand. I'm cutting the Glyset back because I think it's the cause of my GI problems and I don't really need to be on it. Hopefully this will work. The pain has gotten to the point where food disgusts me. I'm dreading eating. Not fun. So far, cutting back on the Glyset seems to be helping.

I also ran low on Atenolol before realizing I needed to mail the prescription in to get it refilled. Oops. I cut the pills in half to have at least SOME to get me through tomorrow. I hope my pills will come in the mail by then. If not... then this will be fun. In the mean time withdrawing from Atenolol is like having a shot of adrenaline hit you all at once (though not as bad as Paxil withdrawal) and my POTS symptoms have been worse the past couple of days. I've been back on the cane. The looks you get when you're my age (20) walking around with a cane are pretty priceless. Especially when it's an old person who looks like they're thinking to themselves "well, it could be worse."