Monday, November 21, 2011

Bear with me while I'm all high and fuzzy

Appointment with the GI doc today. The one that was supposed to end with me scheduling an appointment for a J-tube placement.

What did it end in? Tears, frustration, anger, depression (seriously, I think I may talk to my GP about going back on Effexor, low dose, for a little while....I think it might help with all the stress and chaos that's got me so mixed much as I hate the mood change it causes, I think the way my mood is currently running is less healthy, so it's something I'm considering).

My doc said he absolutely will not place a j-tube because it would be worse for me and too much trouble in my life and a mistake as far as my health. Really? It would be worse for me than living on clear liquids and pureed pastas and pudding? I would love to know that works. I tried pleading my case, making everything clear that I knew what I was getting myself into and why exactly I wanted it. But he adamantly refused. He referred me to the specialist group at SLU, who he says will run more tests and try different medications. I asked him what real cure there was for apparent gastroparesis, and he said they had meds and things for that. I'm unimpressed with his answers and reasoning. But I'm going to the specialist group at SLU. 3 months. This is stupid. I have to wait that long to get in, then it will be another year of tests and medications and who know what the answer will be after that. I just hate feeling like crap like this all the time and I'm not stupid (I'm not a doctor, but I do happen to know a few things), I know that this would be so beneficial to me.

So right now, I'm at a loss. I just want to feel good again, not perfect, just good.

On the plus side, I have a neuro appointment and PT eval both coming up in the next month. It would be nice to get someone behind me on the dysautonomia and treatment/management for that. And I'm hoping PT will help me with some healthy/appropriate exercises and get me underway for fitting for some splints, braces, and other supports (especially a knew knee brace, since the dog chewed up my expensive hinged support brace...)

At any rate, the Percoset has me flying pretty high right now (pain, headache, more pain, muscle soreness/spasm). So I'm gonna sit here and just take it easy for the rest of the night and turn in early to get some rest before work tomorrow.

Tuesday, November 15, 2011

Because I like to do things the easy way

If you're going to get really sick, do it in a hospital.

Went into tachycardia this morning at work. Normally, the intermittent tachy is my heart rate shooting up to 120-130, the wind being knocked out of me for a breath, and the episode ends within a few minutes.

Today we learned new tricks. Like how to jump all the way up to 152. And to just not be able to breathe all together.

When I felt it hit, I went to a vital sign machine and checked my heart rate and O2 sats. O2 was fine despite the fact that I couldn't breathe. Heart rate sucked. And the world was starting to get really foggy and all spin-y. I sat down against the wall and called my charge nurse, told her I was in trouble. She came in, saw my heart rate and my serious lack of breath and grabbed a wheelchair. She checked my blood pressure and we all got a shock at the numbers 140/100 coming up. Down to triage I went.

Within 5 minutes, I was stripped down getting an EKG and my vitals taken again. And taken to a room where I was hooked to a monitor. The episode started dying down then (about 25 minutes total), but I still felt like crap (well, when your heart runs a marathon for 25 minutes....). Labs, x-ray, urine, monitoring, another EKG. As it turns out, there was something wrong during that first EKG. There was an abnormality in my rhythm, which is news to me since any time I've ever been monitored, everything has been sinus. But then, we've never done an EKG during one of those episodes either - never been able to catch it.
So, while everything looked fine by the time I left, we're still going to follow up with the cardiologist to get a full work up and see if there is something there that I should be concerned about.


Quick rundown of things to come:

Tomorrow: primary care doc at 0745. Dentist/specialist for a root canal (possibly 2) at 0945. School at 2. (and I'm thinking a short nap when I get home at 4.)

Weekend will be gloriously filled with rest.

Monday: Gastroenterologist. And there is only one thing on the agenda: FIX MY TUMMY! I'm discussing a Nissen (which, we had scheduled a couple years ago and then canceled at the last minute to yank out my gallbladder) to cut off the reflux. And the j-tube, because I can't even eat pureed foods without feeling sick and horrible and about ten kinds of dead. Nothing but clear liquids and that's not healthy.
If he won't do it, I'll find another GI who will listen to reason.

For tonight: a book and bed. Because I have to be up stupid early tomorrow and I kinda had a long day today.

Saturday, November 12, 2011

Dear back,

PLEASE stop hurting. I'm laying in the most awkward position on the floor with couch cushions and pillows for support. It's the most comfortable I've been all day. I would seriously consider sleeping here, but I know I would hate myself in the morning.

In other news, I made pureed blueberry bread pudding (a lower fat version so it wouldn't kill me)...and it hated me. It was yummy, but it hurt my tummy. So that was a fail.

Gonna go take my sleeper and hit the hay. Night all.

Friday, November 11, 2011

Ups and downs, because that's how I roll(er coaster)

I'm happy to say that doubling my Lyrica seems to be helping a little. The muscle pain (particularly in my arms and LEGS) has been slightly less the last few days, especially when it's the worst - at work. But I've switched to having an incredible amount of back pain, which negates all the work the Lyrica is doing because when my back starts to twist up like this, it throws off my gait, and makes everything hurt. So. I'm not really sure where the back pain is coming from, because it's never been like this before. I would love it if it would leave me.

I am having some sort of issue with my birth control or my girl parts or something. A few days ago I started spotting (which hasn't happened since I started the BC), it was brown, it was very minimal, like it wasn't really going to do anything. Three days of that. Then discharge. Today, a little more spotting. I really have no idea what's going on since I've been really stable since I started taking the stuff....I even took a pregnancy test just to be sure I wasn't in for more than I bargained for (the chances of me being pregnant were about 0.001 to begin with since I was on the BC consistently and the only guy I've slept with is really, I didn't actually believe I was pregnant, just ruling things out here). I'm going to give it the weekend and if I'm still having problems on Monday, I'll call the OB/GYN.

Getting my teeth fixed finally. The pain was getting to the point that I just couldn't stand it and I have insurance that really needed to be taken advantage of. So I'm getting a root canal (possibly two, depending on what the specialist thinks) and a total of 6 teeth fixed (fillings and a crown). There are 8 more we are watching but don't need work at this point. I hate my teeth and I hate that my reflux is doing this to my teeth, but I'm going to be so glad when my mouth isn't killing me every time I breathe.
Oh, and the copay for the root canal is $, I'm looking forward to putting more on the credit card that I was so close to having paid off. Fail.

Came home from work the other night after an extra long shift...I was clocked in for 13.3 hours. I hurt to the point that I couldn't walk when I got home. I used my cane for the night, but my legs just would not move anymore, they were just dead weight. That's definitely a low for me because I've had bad nights but I think that was the worst yet. I considered skipping my evening meds and sleeping in the recliner where I had gotten comfortable...just because I wasn't sure I would be able to get up again.

Major high points? I have a 4 day weekend (well, three, because I have school Monday, so it doesn't count). I have a 4 day weekend with no obligations and the house to myself. My dad will be home tonight, but that's the most I'll see of him for the weekend because he's going hunting. Me and my Bently boy are going to be chillin here for 3 beautiful days. So far today we've spent some time outside (me not as much since it's cold and I'm currently out of arthritis meds). Brought in a few pieces of firewood to keep the stove warm so dad won't have to re-light it when he gets home (and to keep the house cozy, though I don't have it that hot, I've still had the space heater on some today). Doing laundry. I have found I actually don't loathe laundry like I used to. I don't have a laundry day anymore, I just do frequent small loads on days off. This means I'm not sorting (because everything is basically colors that have all color-fasted, so I don't have to worry), and not a lot of heavy basket hauling or hours spent folding. It's 5 minutes folding and hanging and putting everything away and it's done. So I'm doing my bed and the dog's bed (my beach towels that he claimed early on in life....oh well, as long as he's happy) in two loads and I have all day to do it so I've been doing things in between. I sat at the sewing machine for 2 hours (my back wasn't pleased with that)....going to finish this quilt before Christmas this year....I feel bad that it's taken me this long to finish as it is a gift for my stepdad from last year....but it's getting very close to done now. Perhaps 20 more hours of work (I'm not speedy, there's no need to be) and it will be completed.

Today, I'm ignoring my homework. I have a test on Monday that I'm feeling pretty good about but definitely need to study more. But I also need a rest day. So I'm done with the sewing machine today. And basically everything else. I'll bring up the sheets when they're done and that'll be the extent of my work today. Tomorrow I'll cook a little and do some studying.

Have an appointment with the gastroenterologist in two weeks. Going to insist on the feeding tube or a referral to someone who will do it. I can't even eat pureed food anymore without trouble. I'm refluxing and regurgitating everything I eat (except clear liquids), and I'm in so much pain after just a few bites of anything. I hate this and I just can't take it anymore. I want my GI doc to understand this. I know he's hesitant about putting a J-tube in a 24 year old, but I'm hesitant about living on pureed plain pasta and white soda for the rest of my life. I can't function like this. So next Monday has only one goal: schedule a time for surgery to get this damn thing taken care of.

Okay, done sitting here typing because my back is complaining loudly. Going to stretch out on the couch with the pup and watch some old school tv/dvds.

Wednesday, November 2, 2011

If I updated more often, perhaps I would have far less to cram in each time

Two trips to the ED in two weeks. The dysautonomia flare wasn't going away and I had to work two days in a row. So I went to the ED after my shift, got fluids and tylenol (headache was being persistent, because really, I didn't want anything but the fluids, but I couldn't fight it), and felt slightly better for it the next least I functioned longer than I would have without the bolus.

Two doc appointments this morning. Followup with the breast surgeon. No new cysts, nothing else remarkable and the pain has improved. See her again in 2 months. Saw the rheumatologist. We're increasing my Lyrica (doubling it over about 10 days slowly). And she told me I should see the neurologist about the dysautonomia if it's getting worse like this. I already have a neurologist that I've been seeing regularly for about a year, but there's another doc in her office who has studied dysautonomia/POTS more (I actually cared for one of his patients in the hospital, a teenage boy who has POTS, I educated all the nurses about what it was because they were all lost aside from what the doc instructed to do with him). So I'm going to make my appointment with him instead and see if he and my other neuro can't talk things through and come to a conclusion as to who I should be seeing primarily. Also need to follow up with my primary because I haven't seen her in a while and I've been to the ED and changed meds and all kinds of things. So Friday I get to make a ton of phone calls and figure out when I can do all of this and somehow still afford food. I also have an appointment with the ophthalmologist Friday, so yay for new glasses soon. And I see the dentist on Monday (I need dental work so bad right now and there's no way I can afford the stuff that insurance won't pay...but hopefully a couple root canals will hold me over for now. And then to the GI doc the week after that. I'm hoping we can duke it out over the feeding tube once and for all and schedule this thing. I am not looking forward to more tests and craziness when none of it is actually helping me.

And Christmas is all too near, which means I'm going to be even more broke than I already am....oh goody.

I'm looking into requirements and eligibility for SSI/SSDI. And so far, me working is looking like a potential problem because if I can work full time at the job I do now, there should be no need for me to have SSI, but I only work because I have no other choice right now. I've grown fond of food and shelter. The other issue is that I realized I have more assets than is allowed if you add up my savings and 401K. So I'm thinking about cashing in my 401K and just saving cash from now on so that I have a little money reserved if I need it, but won't have to worry about that holding me back from my benefits.

Anywho, had a busy day and I'm falling asleep just sitting here. So peace out to me.