Monday, January 17, 2011


Because there are always things to add to a week in review after the fact.

When I was admitted, I got a fall risk bracelet. I'm not sure why, but it made me laugh. I work there, and I was chained down by a fall bracelet. I found it funny somehow. I mean, it was right, since I admitted to having falls (early in the morning, if I don't give my body time to shift back into place before I hit the floor, especially if it's still dark, and especially if I took my Klonopin late), but it was still funny. And I was allowed to get up and move freely. I was supposed to ask for help or make sure someone was present first thing in the mornings the first time I got up, but otherwise, I was allowed to do as I pleased and make my own judgments (and since nurses were always in by 6, there was someone in the room to make sure I got up and to the bathroom safe....I only had to call the first two days while I was on extra dope and extra fluids.....)

Sunday, January 16, 2011

Week in review

I spent a week in the hospital. The only time I've ever been admitted to the hospital over night was when I had my heart fixed when I was 3. This was an experience for me. I went to the ER for the 3rd day of a migraine. When they tried in vain for hours to relieve my migraine, the finally admitted me to the general med/surg floor. They didn't have a bed open on neuro, otherwise they would have stuck me there. However, the two are on the same physical floor, so should I need anything, neuro ICU was right down the hall (heaven help me if I needed neuro ICU).
Nothing worked in the ER for my migraine. I was very dehydrated, so the fluids were good, but otherwise, all they gave me just made me high and dopey. When I was admitted, I was given steroids and xanax (about the only thing we hadn't done in the ER).

I had no idea that what I thought was going to be a 24 hour stay would turn into a week. I had scans, all clear (we did revisit a small cavernous hemangioma - a benign blood vessel tumor - that we've seen before, and it still appears just as harmless...we figure it's been there since birth, and still not worried about it). I had lots of meds. Eventually, we retried the demerol that didn't work in the ER (because it has worked for me in the past) and it did start to take the edge off. That was wonderful. Then I had a day of stomach pain. We thought that was in part due to constipation (along with steroids and my previous stomach issues), so I got more demerol and laxatives (I take miralax daily, but since I had skipped a couple days and been in bed for a couple days, it was time for a suppository). The next day, stomach was better, but headache was blaring again. I think that was the day we started to revisit the idea of trying an IV infusion of a drug called DHE (migraine sufferers have heard of this, it's not a common drug). It took until late in the day before we got the order for it because the doctor wanted to get it right (she wanted to consult with another neurologist and make sure that it didn't have any contraindications for my preexisting conditions). I got the anti-emetic ordered as a pre-rec (which made me a little agitated), then 30 minutes later I got the first dose of the drug (it was supposed to be a 1/2 mL dose, then 1mL an hour later, then another 1/2 and 1 mL in the morning). 30 minutes later I was vomiting and had diarrhea. Diarrhea I can deal with (though it did suck that the toilets were up high and my feet didn't reach the floor, makes the cramping worse when you're in an uncomfortable position). But vomiting....oh, I just can't. With the EDS, we've studied my gut pretty extensively (not actually in regards to EDS, but now I know that's where the issue lies) and I have very slow GI motility, spastic and sluggish esophagus, hiatus hernia, all things low in peristalsis. So I never vomit. Because my body has a hard enough time moving food down the right direction, much less forcefully sending it back the other direction. I haven't vomited in years. That was painful. And scary. I couldn't breath. Because the food that came up was not even close to digested (I had eaten over 4 hours previous) was barely more than chewed. And my body didn't forcefully expel it like it does for most people. It was slow. I really could not breathe. And I was very worried I was going to aspirate. I was so glad it stopped when it did.
Yeah, I'm dwelling a lot on vomiting, but I need to get this out of my mind because it scared me. It was painful and frightening and just.....a lot. Luckily, my nurse was cool with giving me my bedtime meds early (there were both xanax and klonopin in that cocktail) and I was eventually able to get some rest.

After that, I declined any new treatment. We had run the gamut. I decided that my body was fighting off so many medications that it was time to just let it run its course. So all I took were my PO routine meds, the ones I had been taking routinely, and declined anything extra for pain or nausea. Even though I still wasn't feeling 100%, I was finally able to go home, migraine still lingering (we think the steroids may have helped some), very weak and tired.

I went into the ER on Monday morning and went home on Saturday morning. That was a long week. But I have to say, I was well cared for. From the second I got there, everybody was remarkable. I've been in the ER there before (for tachycardia) and they're a great team no matter what's going on. And all of the staff of the floor I was on were just wonderful to me. My nurses were just fabulous and I couldn't have asked for better from them. And the techs support staff and everybody from the bottom to the top of the ladder were all so great to me. Everyone is important in a patient's care. I preach that every day, but it's much more meaningful after being a patient. Especially for a week.

And the doctors were incredible. My admitting physician was well enough. She came in to see me daily. But it was my neurologist who I absolutely loved. I had a consult sheet to call her, but with things that had been going on with my pup, I hadn't gotten around to it yet. But meeting her was remarkable. She was there the hour I was admitted. We went over my history and talked about EDS and fibromyalgia and possible course of treatment for the next day or so and she was back early in the morning. She had talked to a couple of my specialists and done research on EDS and fibromyalgia all in conjunction with migraines, the treatments I've tried and the treatments we were planning to try. She wanted to let me know that she didn't want to do anything that might complicate my conditions further. I was so impressed that she would do all of that, as busy as she was. This is one very dedicated doctor. Each day, whenever she had something to talk to me about (she came in every day, usually early), she gave me the regular info on whatever it was, as well as what she could deduce based on findings for EDS and fibro (because neither have been researched greatly with a lot of the treatments we were looking at). I was just blown away. And she was constantly consulting with other doctors to make sure she had all of my bases covered (she called the rheumatologist and GP and gastroenterologist all daily to make sure there was nothing that would be compromised in any of her or their treatments). My props go to her. I cannot thank her enough for what she did for me this week. My gastroenterologist was also wonderful. He was in to see me after my second day when my stomach problems started setting in (even though he had been on the phone with the neurologist a lot). He made sure that we were keeping my stomach protected and that I was preventing any further problems from arising (because one problem I had was constipation from skipping my miralax too many days...I don't take it every day, and usually not even a full dose), so he wanted to make sure that I was staying ahead of the game, that I was covered for nausea and pain control if I needed it (I had been laying off the miralax lately because I was having IBS related cramping...very uncomfortable). Just the fact that he was in to see me and address any concerns I had was very comforting.

I plan to send cards to my doctors and to the floor I was on for all the nursing staff. I work in that hospital, just down the hall from where I stayed, but I have a very different perspective now that I've been through that. And I am so very grateful for the wonderful people that are employed there. I think I wouldn't have been as well off if it hadn't been for them.


All that said, we still didn't pin down my migraine. It went down in severity. But it never went away. It has been moving all over and the quality of the pain changes constantly. I'm not sure what to make of that. I've never had a migraine like this one. My stomach is doing better though. I'm eating better today than yesterday. And I think with my last dose of steroids tomorrow that will help the problem greatly (though I will stay on the acid reducer for a couple more days just do be safe). But the migraine is still there. And we're not sure why. All the imaging looked good. Blood work looked good.

The neurologist and I have decided the next course of treatment is Botox. It would be about every 12 weeks, as a prophylactic, hopefully to replace my daily Topamax (which isn't working well at all anymore). And I'm also going to try to find somewhere to get acupuncture done at least semi-regularly. I realize I have to watch my expenses, but pricier prophylactic treatment is still cheaper than a week in the hospital and another week off work after that (I'm not allowed to go back until I follow up with the neurologist in 1-2 weeks, I'm going to make it 1 week, because I need to get back to work, and I think I'll feel better there anyway).

So. For now, I'm bumming around. I'm still weak from a week in bed. (though I did notice that I didn't have single episode of tachycardia or anything that felt POTSy while I was there....constant fluids for a few days, then xanax around the clock and constant bedrest with intermittent short walks and sitting up with the aide of the bed....yeah, that part felt better.....which leans me even more toward that nagging thought that I need to print off some articles about POTS/dysautonomia and get them to a doc...though now that I have the new neuro on board who is receptive to my conditions, maybe that's the best place to start).
But I have my movies, and my puppy. And it's probably a very good thing that I have my puppy. Because I have to get up every now and then with him. I have to get him more food/water, or take him out, or corral him from the kitchen or play with him a little, which is all good for me. And I've been making myself sit up longer and forcing fluids until I float away. I refuse to get sick again.

So that's that. And my klonopin is long past kicked in. And my puppy has been snoring on the couch next to me for quite some time now.....I think it's bed time.
Night all. I'll check in with you all soon. Like, tomorrow is the plan to get caught up on blogs :)

Much love!

Monday, January 3, 2011

Yep, I suck at updates ;P

I was keeping up with life and totally sucked at keeping up with my blog. Kinda how I go.

So, since I was here last, how about the highlights.

I saw the genetics team/specialist at the children's hospital. I spoke in great detail for a long time with the genetic counselor, which I wasn't expecting, but it was totally great. Really gave me a lot to think about. And the geneticist spoke to me with the genetic counselor in the room, so that we were all on the same page. Clinically speaking, it looks like EDS is official. But those words were not spoken, only hinted at, lest there's a twist in my story still. She is going to get me a molecular study and see what it looks like. Though we both know that genetic/molecular studies do not show all types of EDS, she still wants to see if there is anything to see. If not, we'll go from there. But for now, we're just waiting on my insurance company to approve the molecular study, because it's not something you can do and then bill insurance for later (like blood work or a doctor's visit)'s very expensive and not very common, so it's something they want pre-approval for, to make sure it's necessary to be spending that kind of money. (if the doctor orders it, chances are, it's necessary, but whatever)

I adopted my little brother's puppy. Since he and his girlfriend are having a baby, they can't keep their puppy. They're on a tight budget as it is, and they have another dog (my brother's 7 year old chocolate lab). And the puppy happens to be an uninsured pit bull. One, the lack of insurance is not good, and they can't afford the insurance or anything else extra for him for that matter. And he's a pit bull puppy who needs lots of attention. And so does a baby. And a pit bull puppy won't know that a baby can't play or defend itself when he gets wound up. So they had to find a new home for him. It's hard to find a good home for pits because you never know if someone is going to train it right or train it mean (both are easy to do). And my brother didn't trust anybody he talked to. Finally, I offered. Although my budget is tight as well, I can better care for him (financially and emotionally) and this way he knows that he's going to a good home. So now I have a silly pit bull pup. So far, we've been to the vet several times (which he loves because they give him lots of treats) because he has eye problems. He has a birth defect in which his lower eye lid is turned outside in and his lower lashes are on the inside, rubbing and poking his eyeball. We thought that was bothering him because his eye was always red and droopy and inflamed and he was rubbing at it constantly and would hardly open his eye. When I took him to the vet, we found out he had a punctured cornea. A few months back, my brother mentioned that the puppy (Bently) was bouncing around the house and banged his head really hard on the corner of the coffee table. The pattern of the healing and the timing of that fit this. He punctured his eye when he hit the table. Once we got that starting to heal, he was a completely different pup. The inverted eyelashes don't really seem to bother him now, so we're not going to worry about it for now (no sense in doing surgery on something that might not need to be fixed). The eye still has a grey area and a sheet of blood vessels over the healing spot, so his vision still isn't great in that eye (guessing) but I'm sure it's better than it was. And he seems so much happier. The rest will heal on it's own in time.
And in 2 weeks, we go back again to get him fixed. Dun dun dun. He's not going to know what to do with himself all day without his balls there to lick constantly.

Had Christmas with my family on the 18th of December. And saw a friend in the hospital. She was in the burn unit; accidentally poured hot grease down her leg. I was glad to see her in good spirits and feeling better. And she even got to go home the day I saw her (she had been there a week).
Christmas was simple and light this year. A lot of gifts were for my bro and his girlfriend and the baby. Even things like diapers and wipes. Because they'll be on a very tight budget and we're trying to help out however we can.
I also made my stepdad a quilt out of his old Marine Corps t-shirts. That was probably my favorite thing this year.

I got a little digital video camera (kinda like a Flip, but different brand, and this one can take pictures as well). Which I'm still having fun learning to use. But I love that it's pocket sized.

Spent Christmas day with my guy (and the puppy). I had a cold which sucked royally, but he took good care of me, and we still had fun, just the two (3) of us. We exchanged gifts, watched movies, listened to music, made a "traditional" Christmas dinner. It was just what we needed. It was so wonderful. I loved it.

New years eve, I didn't have much in the way of plans since I had to work new years day (so I had to be in bed early). But my guy and his family left his parents house (several hours away) early enough that he could get here to have supper with me. We went out, had supper, talked (he had something serious he needed to get off his chest that happened recently), and he brought me home to get ready for bed. But as tired as he was, and still so upset about what was going on (not something that's going to go away anytime soon, unfortunately), I asked him to stay (since my dad was out at a friend's house for new year's eve anyway). So we cuddled up in bed and had our new year kiss very early and went to sleep. And woke up to fireworks galore at 12:30. Then woke up for me to go to work at 5. I'm really glad he stayed, because I miss him when he's not around. And I know he would have had a hard night if he had gone home and not been able to sleep because he was so stressed.

What else new....?

Oh! Bently's vet told me about this heart camp! Last time we were there, I was wearing a low-ish shirt that showed the top of my sternal scar. She asked about my heart defect and then told me she had a daughter with a heart defect as well. And told me there's a heart camp not far from here that goes for a week in the summers, usually in July. I knew there were heart camps for kids out there, and the kinds of things they focused on and everything, but I didn't know there was one so close. So she gave me the info and I got an application to be a counselor this summer. I'm very excited. I would have loved to go to a heart camp when I was a kid. But now I'll still get the chance to be a part of one and change some kids lives. And that's going to be awesome too. I can't wait!

Also going to get another tattoo this summer. Wanted to do it today while me and Matt were both off (school starts back up tomorrow), but he said that he would have to wear a long sleeved shirt to work and that would be too painful (his is going to be on his arm, and he always wears long sleeved shirts to work). Personally, I think getting the tattoo hurts more than your clothes brushing on it (and my first one was right where my belt line is, so my scrubs dug into mine the whole time it was healing), but whatever. I don't know if he just had another reason and doesn't want to tell me, or if he really does think that it's going to be that tender. He said his last one didn't bother him one bit, so I'm not sure how this would be any different. *shrug* I don't know. But it's too late now. So whatever. Guess we'll wait until the summer. Or maybe I'll get one anyway (because there are two that I've decided on right now) and he can wait until summer and I'll get another one then too. I haven't decided yet.

Well, I think I'll end it there because I've been rambling on for quite a while now and I'm getting sleepy sitting here. I need to take the puppy outside to play. And I need to have a snack.

Much love.