Wednesday, November 24, 2010


Well, at least it's consistent if nothing else. My body, what else.

Went to see the new doc (primary care) last week and she was great (still miss my old doc though). She listened, didn't stop me or try to object to anything, she let me be my own advocate and made sure I was finished before she started speaking. We talked about my concern of flogging my body with medication and she agrees we should try to seek alternatives whenever possible but keep me as healthy as possible. I told her that I wanted to be taken off Savella but my old rheumatologist disagreed with the idea. We discussed it, I told her why I wanted off of it (that it made no changes when I took it - except to cause side effects - and I noticed no change/improvement in pain until the Lyrica was started, on top of the Savella). She told me to try taking it down to half dose, lose the PM dose and see if there's any change, then when I see the rheumy again in a couple months (new rheumy, new insurance, all new docs), we'll already have an idea with evidence to back it. I like this very much.

She also did the new patient blood work (just to get a baseline - is there a baseline for someone with chronic illness...?) and since I couldn't remember my last lipid panel. I got a note back in the mail today with a script included (CRAP). My calcium is elevated and vitamin D is low. Say what?! I take a multivitamin daily, but it doesn't pack a huge bang in either department. Mostly, it's got minerals and folate and B vitamins (it's a prenatal that I've been taking since I was a teen). I avoid dairy as a general rule because my stomach is so sensitive, and I haven't even been eating my yogurt lately (for the last month, it just hasn't been hitting the spot). I know calcium comes from other sources, but that's a biggie, and not part of my diet so much, so I'm really not sure what I'm taking in (or not taking in/putting out) that's making my calcium so high.
And also, the vitamin D deficiency sucks. It's not terribly low. Just slightly. But enough to earn me a new prescription. Goody. She wrote me a once-weekly pill for the D, which is nice. Provided they're not outlandishly pricey, I prefer that. Honestly, I think I'd rather slather the important parts (face, neck, scars, etc) with some SPF 45 and take a 10 minute cat nap in a low dose tanning bed once a week and see if that makes any kind of change. I know the cost would be about the same and insurance wouldn't cover it, but I would be okay with that if it would mean less medication in my body. I think I will talk that over with her. We'll still have to reschedule time to get that recheck of both levels and do my pelvic exam at the beginning of the year anyway.

In the meantime, the Klonopin is well past kicked in and whatever else I had to say is not going to get said tonight.

Thursday, November 11, 2010

Happy Veteran's Day

I cried when Scott told me not many people wished him a happy vets day or said thank you today. That really just broke my heart. That's just not right. I hope he at least got to spend the day with Amanda and enjoy himself doing something fun.


The dysautonomia/EDS flare seemed to die down. I felt much better today than I did yesterday. I didn't have to take the beta blocker today like I did yesterday. And I think I like keeping it around as a PRN rather than taking it daily. That makes me feel better about having it. That it works in one-time doses and that I don't have to take it routinely to get it to work.

Still haven't told Alicia about all of this, and it's really ridiculous. She's my best friend, but lately, it feels like she's not. I feel like I'm just out of sight, out of mind. And it's not fair. I feel like she's going to make me feel like I've done something wrong for not telling her sooner when she does find out. And that she's going to make it seem like it's nothing. And that I'll be fine with a little fresh air. Just like when we were kids. I'm so frustrated by all of this.

And then I'm talking to Scott who's going through a horrible chronic pain condition who reminds me that he loves me and that we're family and he'll be here if I need anything and I want to call and spill my guts and tell him everything that's gone on in the last few months and how Licia just hasn't been there for me and how I really miss her and how it just sucks. But I can't do that. I can't.

So, I contain it. For even longer.

And head to bed. Because I have another long day of work ahead of me tomorrow. Then a weekend to enjoy the hell out of!

Wednesday, November 10, 2010


I subluxed my right wrist (complete with that wicked POP both times that always makes it smart so much) twice in bed last night. Once getting in, once turning over to get comfy. It gets to wear a support brace today so it can't bend anymore. I'm not listening to that popping sound again, or going through that pain, because between the thumb and now the wrist, my right arm has had just about enough.

That said, still going to enjoy the hell out of my day off. Starting with last night's Glee!!!!

Tuesday, November 9, 2010

Short, sweet...

I dislocated my thumb taking off my TEDs a bit ago. Hence the need to be short and sweet. Typing hurts all through my hand/wrist/arm/THUMB.

I'm off the beta blocker. Talked it over with my doc, we came to an agreement. I keep the script around for emergencies and titrate properly, I can try going off. It worked. I feel the same. Go me. One less pill. One less that I didn't need anyway. Because I'm still having dysautonomia-like symptoms that need to be dealt with.
I broke down and bought a heart rate monitor watch. We'll keep better track that way.

Finally heard back from the stomach specialist surgeon about the tests I had. I have visceral hypersensitivity. I don't need surgery. Just a new med. I can get rid of the proton pump inhibitor I've been taking for years (it wasn't doing much anyway) and start a different kind of med (after making an appointment with and seeing another gastroenterologist). This stuff will work much better for me according to the doc. Basically, it's like my body is just allergic to it's own stomach acids. The new treatment will target that better rather than trying to mask it unsuccessfully.
Also, I have a spastic and sluggish esophagus. Shocker. I have EDS ;P But he said he's seen this independent of preexisting conditions before, so not to go completely blaming the EDS for this one.

Insurance company finally came through. I have my drugs. And they prorated a little bit since I paid out of pocket for the first ten tabs. I only paid a small portion of my copay on the remaining 50. That made me feel good.

I think it's time for me to hit the hay. I have a lazy day coming up tomorrow and I am greatly looking forward to it. Don't want to waste any of it by staying up too late ;P

Monday, November 8, 2010

Too early for witty titles; I'm up

I'm completely off the beta blocker. And the symptoms are about the same as what they were before. I'll keep it around in case I need it in the future, but I would like to stay off this one. Especially because my blood pressure is already so low.

The more people I call, the less I know about the status of my prescription, or even why it's in limbo in the first place. But, an angel (she's my angel, anyway) overheard the conversation when I called the pharmacy again Friday, saying that I was already exhibiting early symptoms of withdrawal and that I knew I wouldn't last much longer. She (the pharmacist, my angel) interjected and told me they can sell me an emergency supply to get me through the weekend. PERFECT!
I went in and talked to her, we still don't know where the mixup is, but she gave me 10 tablets for $51 (they don't come cheap) which will get me until Wednesday morning. After two doses and about 24 hours, I felt much better. God bless her.

In the world of dysautonomia, I've been having polydypsia and polyuria lately (last few months). Like crazy. And I know with my history of reactive hypoglycemia (or any endocrine disease or history of one), a doc is going to look for diabetes. So all this week, I'm doing routine blood glucose checks at certain time intervals just like they would for diabetics and taking that information with me ahead of time to rule that out (taking it on paper, so they can see the diet involved as well as taking my meter so they can see the numbers and averages). I don't want to go through diabetes testing for a disease I know isn't there. The highest number I've ever had in my life was 145 and that scared me to death. I still don't know how that happened (I think it was gastric dumping from my gallbladder surgery, even though I have slow GI motility from EDS, I've had 3 bouts of gastric dumping since my gallbladder surgery, and they were hell!). I just want to get this genetics appointment over with so I can go into an office with confidence and say here's what the problem is, it's directly related to my EDS and I would like to discuss treatment options from that angle. Not go in with a symptom and have everything but EDS discussed.

Also, I learned that tight shoes help with the bone shifting I've been having in my right foot lately. It just kinda holds them in there like a girdle (you would think the damn TEDs would do that enough). So if I wear my boots, I have to put an insert in them to take some space out of them, and I just lace my sneakers a little tighter. All good things to know. It's a big learning curve.

Anywho, that's the gist of that. I need to go eat something. Even though it's insanely early. Not much else to do, and I'm actually hungry. So I'll always go with that feeling.

Wednesday, November 3, 2010

The good, the bad, the downright scary

I dislocated a rib in my sleep. I remember it being very painful, but I take Klonopin at bedtime so I was out cold, plus, even when I'm in pain in my sleep, the sleep wins out nearly every time. I remembered more and put together the pieces better this morning when that spot was still tender.

I had to patient sit yesterday at work. That sucked ass. I didn't get breaks and sitting KILLS my hips. I'm still sore from that (well, the fact that the two breaks that I did get saw me subluxing also left me pretty sore too).

The cooling weather is not good for the arthritis.

Likewise, neither is my new project. But screw that, I'm enjoying it so much. I'm making my stepdad a quilt for Christmas out of his old Marine Corps t-shirts and a Marine Corps print fleece that I found. I'm doing the blocks by hand, then I'll do the big stuff on the sewing machine (which my mom is going to bring to me next weekend). It's really been stressing on the fingers, but I'm enjoying it so much I don't care (though I do wish I had finger splints...that would make things so much nicer).

After much discussion, my doc and I decided I could try to titrate down off the beta blocker. I'm hoping there will be no significant change that requires me to go back on it.

Because of my new insurance company, I'm being forced off my Topamax. I'm scared shitless about this. I always take them to get filled the day they are due to fill (you have to wait a certain amount of time with some drugs, with topamax, I have to have 1 week left before I can fill). With one day left (I went earlier in the week and they still weren't ready), they tell me the insurance company is having trouble with the authorization. For whatever reason, they are making me jump through hoops. I have 6 refills left on this script, I've been on it for 5 years so the pharmacy has me on file (with a couple different docs), but that's apparently not good enough for them. And now because of it, I'm going to run out. It's $300 to get it without the insurance, which I can't do. But this is a drug that's dangerous to go off of cold turkey. You have to titrate down slowly. I've been on it for 5 years and I've only ever missed 2 doses (and they were over a year apart), so I really don't know how my body will react to dropping it without warning. I'm paranoid. I really hope they come through and get it soon because I have one tablet left for tomorrow morning, nothing left for tomorrow night. That's a really scary concept to me considering I know the side effects of stopping this stuff like that.

I'm tired, and I want to quilt some more, but it's bed time. Nighty night for me!