It's been a while...

I haven't updated in close to a month, and now it's 2012- holy cow!

Here's what's been going on:

* I met with my POTS specialist recently. She feels I’m doing so well that she’s putting me on ‘maintenance’. To her, working a few hours a week and doing nothing else is enough for me. Seeing as I can’t do enough to live on my own and support myself, I’m frustrated and don’t think I should be in ‘maintenance mode’ yet. But, that will be something to bring up at my next appointment. (She ushered me out incredibly fast yesterday because she was behind schedule. I’m a bit miffed about the whole thing.)

* I've been seeing a vascular specialist, over an hour away, to try and find the cause of my recurrent purple hand and foot. For no apparent rhyme or reason, my hand and/or foot will turn purple. It started almost a year ago, and happens several times a day regardless of temperature, or anything known to aggravate it. I had many, many tests that revealed some startling things, but that were inconclusive as to why this keeps happening. After everything, what was concluded is that I have something called Primary Acrocyanosis. Which is just a fancy term that says parts of me turn blue with no apparent cause. I have no underlying vascular or cardiac problems (like lupus) and the blue-ness tends to happen on it's own. Basically, my blood vessels spasm and parts of me turn purple. While some POTSies have secondary acrocyanosis (AC in relation to having an underlying disease), as I've had POTS for several years now and this is relatively recent, mine seems to have occurred on it's own. I spent hundreds of dollars, and put an insane amount of stress on my body to find out that I have yet another rare (PAC is extremely rare), incurable condition.

***

On the positive side:

* I handled the holidays very well. My POTS was kind to me and I was able to attend two family functions for a short time. I was also able to eat- something that is difficult for me given my constant nausea. I'm very grateful for that.

POTS Awareness Week

POTS Awareness week starts today! Some good friends of mine helped to create this image for me (and fellow POTSies!)

One heck of a doctor's visit

Boyfriend and I made the trek to meet the new specialist. Outside of having a horrible POTS day, it was actually a fairly pleasant 45 minute drive thanks to light traffic and the way my boyfriend speeds (lol).

As soon as we got there, they took us immediately and I was talking to a doctor within minutes. The office definitely gets some serious points with me for being on time! The first doctor I saw was actually shadowing the specialist I was there to see. He took care of all the preliminary stuff: BPs, a thorough stethoscope exam, family history, going over all of my symptoms and previous testing.

Then, the doctor came in and went over everything. He also did an examination of his own. He then sent me to have an arterial ultrasound and a TBI right while I was there.

To make a long story short, here were his opinions/thoughts/comments:

- I don’t have EDS. Apparently people who have EDS tend to have a lot of the same physical features (eyes, nose, chins, etc) almost like someone who has, say, Down Syndrome. I don’t have those. Plus, if I had vascular EDS, I would have had ruptures and several aneurysms by now which all of my tests have shown that I haven’t. (They would have shown if they’d happened in the past a well.) That wasn’t entirely shocking as I read last night that people with vascular EDS have serious problems if they reach their 20s, and often die in their 40s. Needless to say, I’m relieved that I don’t have it. (I wish there was a definitive test that they could do. I’d feel better with a definite no.)

- I don’t have Raynauds phenomenon. The color that my hand/foot turns isn’t consistent with Raynauds. The fact that the ‘episodes’ aren’t related to cold is another point. With RP, the color changes are entirely related to temperature. While it’s still possible, in theory, that it’s RP, he’s treated a lot of people with it and is fairly certain it’s not that.

- The good news is that all the super serious things have been ruled out. No FMD, no EDS, etc. (Though I'm debating a second opinion on the EDS just to be safe)

- In the end, he’s just as mystified as everyone else. He wants me to have two tests. One is a blood panel for lupus (which has been in my family) and other rare rheumatological disorders. He doesn’t think it will come up positive for anything, but after about a million rounds so far this year, bloodwork is a cake walk for me and he wants to be sure. The other is some sort of rheumatology test to check the blood flow down into my hands. From what he said, it seemed like an ABI but for my arms and fingers. I’ll get my resting results, and then I’ll do a few arm exercises and take those results as well. It’s non-invasive so it’s not a big deal…just annoying that I have to drive all the way back there for it. I also have to keep a diary of my ‘episodes’ and what I’m doing during them. (One more thing to keep track of. Ugh!)

I shad my bloodwork earlier this week and they’re going to call me about scheduling my test. I scheduled my follow up for everything to be on December 30th. While I know it’s optimistic (and possibly delusional), I’m hoping that, no matter what the diagnosis is, I’ll be done with all of this before the new year. (Obviously, I’ll still be treating my POTS and that’s not included in that goal lol)

Tomorrow

I'm going to meet with the specialist who will, hopefully, be able to tell me if I have EDS or not. While I'm sure I probably don't have it, I'll be glad to hear for sure seeing as the kind that would be most likely is the vascular one; which does not have very good stats. With any luck, he'll be able to figure out why my hand keeps turning purple, and why my arm and leg ache constantly! Especially, now that I know it's not a cardiac, circulatory, or neurological issue.

I'm also glad that my MRI came back as normal, meaning my vision loss was just an aural migraine! I'm very relieved. I have my fingers crossed that those won't become a frequent thing as that scared the bejeezus out of me!

***

As far as an update on POTS goes, I started my higher dosage of Midodrine and my aches seemed to get worse. I started to get nasty headaches as well. I've dropped back to my original dose for a day or so and my headache (which has been around for five days!) has significantly decreased. I'm going to talk to my specialist about it at my next appointment because I saw some improvements fatigue-wise with the higher dose, and some drawbacks. I'd be curious to see what she has to say.

A visit to the specialist

I had a visit with my specialist yesterday. We discussed a lot of things, including recent testing that I've had done and how I've been feeling.

When I told her that I felt I was having a lot of setbacks lately, her opinion was that it's probably from doing a job that is not exactly a good choice for someone with POTS. I'm constantly on my feet for hours at a time and I have a lot of bending and standing to do as well- none of which adds up to a great job for someone with dysautonomia. Right now, the job I have is my only option. It took me a very long time to get it, and I'm lucky to have it. So, even if it would be best for my health to leave it, I'm not going to do that. After all, how am I supposed to afford my medications if I'm not working at all? I'm not fortunate (or unfortunate, depending on your point of view) enough to receive any kind of aid, so not working isn't an option.

She is impressed, for lack of better word, that I am working as much as I am. Working 8-12 hours a week is a big deal for someone with my condition. While she's happy with that, I obviously am not. I can't work enough to support myself living with my family with minimal expenses and it feels like I will never be able to work enough to save money and move out. While my family doesn't exactly appreciate my illness for what it is, or it's severity, I'm lucky that I can still live at home. There's no way I could move out or support myself. It's...heartbreaking to be so reliant on someone else. It's even more upsetting because I'm in my mid twenties. I should be out exploring the world, living on my own, working, going to school, etc...and instead I'm penniless and living at home.

Yes, I've made some strides. I can run errands. I can work a four hour shift. (Although, to be honest, I tolerate it very poorly.) While these are great things, it's far from enough. I'm coming to terms with the fact that my life will probably never be what it used to be before POTS, and my health may never be what I want it to be...but there has to be more than this. I can't live a life like this.

***

My doctor and I discussed how I'm handling having a chronic, disabling illness, and she asked me if I felt I was depressed. I've always been very wary of that word. Depression seems like something that is so overdiagnosed and that most doctors just want to throw pills at. That is not what I want, or want to have associated with me. My last general doctor (not specialist) thought all of my symptoms were just anxiety and depression and wanted me to take pills.

(They were wrong, I had POTS.)

I think, considering everything that I'm dealing with on a daily basis, I'm doing fairly well. At least, I thought so until she starting asking me about my sleeping habits, how often I cry or get overwhelmed, and what my support system is like. Answering her questions, I almost broke down right in the office.

I was told that it's normal to feel depressed about all of this. After all, POTS completely changed the course of my life and I struggle against it constantly. Some days are tolerable, but some are completely unbearable.

It's difficult to be exhausted from the simplest of tasks and I'm frustrated by my lack of progress. It's hard to watch the people I was friends with, or my family members, go on with their lives while it feels like I'm trapped no matter how hard I try. It's extremely hard having to explain my condition over and over, or worse- complete lack of empathy or even an attempt at empathy from people I come into contact with. Hearing all of the "you don't look sick" and "what do you do all day?" comments.

On top that, there's the lack of awareness and understanding from most medical professionals. (I can't even count the number of doctor' I've had to inform about POTS...shouldn't it be the other way around?)

Who wouldn't be unhappy?

My boyfriend was there and he feels it's a bit more serious that I let on, and he said so. Based on what she asked me, I sounded like I was depressed, or becoming depressed, from fighting POTS. I cry pretty frequently, I rarely sleep, and I'm having a hard time dealing with the fairly constant criticism (for lack of better word) that I have to put up with. I'm also lonely from the isolation.

I may try to find someone to talk to who specializes in chronic illness. (I tried before, but the person my specialist recommended wasn't accepting patients and couldn't recommend anyone else who deals with chronic illness.)

***

After that, we decided to up my midrodrine to 7.5mg three times a day (on top of my florinef) because I'm tolerating it well and there's a lot of play room for dosages before we would try switching to something else.

I'm also going to be having a brain MRI. Last week I lost a fairly large portion of my vision temporarily and she thinks it was an migraine with aura. She's not overly concerned but it's something I've never had before and it would be better to be safe and make sure that is what it was. Plus, over the last few months I've noticed an almost constant aching and stiffness on the right side of my body; and trouble focusing with my right eye. She gave me an in-office neurological test and wants me to have the scan just to be sure. (and it would give us a 'base' point for comparison in case I would start developing anything else.) I was nervous when I couldn't do one of the tests though (walking backwards), and she asked me to repeat holding my fingers up together twice.

She also suggested I seek out a rheumatologist for my recurrent purple hand.

(I never posted the result of that, so to make a VERY long story short: I had a lot of cardio testing and there's a mild stenosis in my arteries but not severe enough to be causing my hand to change colors.)

I'm also to ask about Ehler's Danlos Syndrome, which is common with people who have POTS. I'm hoping the person my cardio/vascular specialist recommended is familiar with EDS and would be able to diagnose it if I have it. He's almost two hours away, so it would be good to know if he's capable of diagnosing EDS before I would even make an appointment.

***

Overall, I guess it was okay. She's pleased with my progress- though I'm obviously not. What can I say- I'm impatient. I am not thrilled about more testing, and another possible condition to deal with but I know that checking for them is doing due diligence. At least I have a doctor now who wants to be thorough, so I can't complain too much. Better to be taken seriously than blown off like I have been in the past.

All I can do is what I've been doing: getting up every morning and trying as best I can.

(Almost) back to square one

Over the past few weeks I've been having more and more setbacks. Considering that I was finally starting to push forward, I'm pretty upset over it.

Being upset, naturally, I want to talk to somebody about it and it's times like these when it's glaringly obvious how much POTS has taken from me- in terms of relationships. I feel incredibly alone; very isolated. When I make a stray comment or something to my family, through facebook or whatever, they ignore it completely. As far as friends go? Forget it. Of course, I know people are busy and have lives, I don't expect anyone to be sitting around waiting for me, but when I'm reaching out in some form and receive no response, I'm definitely not going to approach someone and force the to talk about something they have no interest in. (I have a few really great online friends, but I'm talking people I know in 'real life'.)

I'm very lucky that my boyfriend is supportive. He's always willing to listen and be leaned on...but POTS is a huge imposition and has been for years. I feel guilty talking about it. I try my best not to complain but he knows when I'm not feeling well. (We've been together for years, he can just sense it at this point.)

I guess my only hope right at this point is to just keep pushing to get better, then be able to get out more. Until then, I'm on my own. I'll be talking to my specialist on Thursday to see what to try next.

Awareness Week

After searching the internet over and over, I've found that while there's an "Invisible Illness Awareness Week, there is no POTS Awareness week.

So, I'm instituting one and here it is:

Postural Orthostatic Tachycardia Awareness Week:

December 11th-18th!