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)....it 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.

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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!

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

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.

sigh number two, or, the week is finally over

So I had my consult at Barnes. The surgeon was good and had some good ideas and agreed that a fundoplication was good to have on the list. But he wants to run another test first. Since my 24 hour pH monitor last year came back pretty normal (either because I was having a good day or my pH really is close to normal), he wants to see if I'm having regurgitation/reflux of non-acid stomach contents. There's a test similar to the pH monitor to check for that. They're supposed to call and schedule me for that.
He also said there was something called visceral hypersensitivity. It's entirely possible that my body doesn't tollerate a normal amount of acid and is breaking down and reacting to what would be "normal" to any other person. He said this can be treated non-surgically, with things that I haven't tried yet (since we weren't looking for it before). If that's what it is, that would mean one less surgery, but a lifetime of some kind of pill/treatment and probably another diet change. So both have pros and cons.
We'll see what the impedence test shows.

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Saw grandpa after my appointment. And I couldn't have been happier when I walked in and he recognized me immediately. He was really doing much better than I was expecting. He still has a large clot in his carotid artery to worry about, but is much more stable now than he was before. He is completely blind in his right eye (I thought she said left before)....no light, no shadows, no movement, no nothing. It's just gone. And he has some facial paralysis. He has to work to keep his eye open and mouth closed (grandma had fun reminding him every five minutes to do so, payback after years of hearing the same commands after her stroke). But the paralysis on his left side is improving. He can bring his hand up to touch his nose, he was scratching his right shoulder with his left hand, playing with his IV tubing with both hands (the nurse in me was watching that a lot closer than the rest of the family....that takes a LOT of fine muscle coordination....I was really pleased to see him doing that, just threading it through his fingers, back and forth, and not dropping it), he wasn't moving his left leg quite so well (the right one was doing fine), looked like his toes were drooping quite a bit already, but he's going to be getting a lot of therapy, so I pushed my worries back on that one. He still doesn't have bladder/bowel control yet, but he'll start to get that back when he starts moving around again. The more he gets up on his feet, the better his bladder will begin to function. They took him off thickened liquids while we were there (he's been moved lower and lower on the scale the last few days), changing him to regular liquids with 100% supervision and prompting to tuck his chin, which he was doing very well without any choking trouble.
It was just so great to see him doing so well after such a traumatic CVA. It was great to see him cracking jokes and making light of the situation. He's still worried whether or not he'll get his driver's license back or not (I really don't know if they'll give it back to him if he doesn't regain his sight in that eye, given his age and 2 CVAs), and he's worried about his leisure activities, but we promised him we'd teach him how to shoot left handed and that since he usually only crappie fished anyway, he didn't need to cast a rod like a pro anymore.
He'll be okay. Surgery is on Tuesday. I pray that it goes smoothly and uneventfully and that his recovery will be just as quick as it has been going. I really think he's going to be just fine when all is said and done here.

I took a short nap before work when I got home that night, and woke up to a voicemail from my little brother. Called him back and he told me his girlfriend was pregnant! OMG!! I can't believe it!! It's still absolutely amazing to me! They've got a lot to figure out, but they'll do this. They're really excited and happy and I'm happy for them!

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Thought I was finally going to get some sleep after two days of running around. Even took a sleeper to make the transaction complete. Then my body stepped in and screwed me over. I woke up a lot. It was a very unrestful sleep. And I woke up hot and in pain and in a drug-induced hangover because I didn't get to sleep it all off. I'll be so glad when I start sleeping nights again, because I really think I'll sleep much better then.
I woke up with HORRIBLE jaw/facial pain Thursday. That was probably the worst my mouth has ever hurt like that. Had I not already been in a sleeping pill haze, I would have gotten into 'the stash' and taken something stronger. I hate narcotics, I hate taking anything at all really (even tylenol on a regular basis), but sometimes, pain meds are necessary. That's what I have them around for. Darvocet and Vicodin, emergencies only.
I also think having a different job will help. Because my pain has really been minimal this week since I've been on the "light" hall. It's much like what I'll be doing at the hospital, more time on my feet, but less straining and pulling and wearing and tearing on my joints. Which I'm looking forward to.

Got home from work yesterday morning and had a small bowl of cereal. I have to eat something when I get home to keep my blood sugar from dropping while I sleep and because I need food on my stomach with a handful of morning pills. But 5 minutes after I ate I felt like crap. My stomach has been seriously hating on me lately. I think I'm about to have another go round with IBS. The rheumatologist gave me a new prescription for IBS meds to try if I want to (if that's what I'm about to endure), but what I have works pretty well for me right now, so I think I'll stick with it. No use in messing up a good thing.

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Went over to Matt's last night. At first I wanted to go out and do something since we hadn't seen each other in a while and it was so nice out (75 and sunny and beautiful), but since I still wasn't feeling well and he'd had a crappy day too, we opted to stay in. We bummed around, went on a grocery run, made yummy food, and bummed around some more. And fell asleep cuddling on the couch for a while, because that's the best end to any night. What more could I ask for?

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I just downloaded I Spy on my iPhone....I'm definitely going to play that for a while before I hit the hay!!!

Tummy woes....I will tackle you!

So I cut out my sweets and junk food at work (late night mindless snacking is not healthy) and worked on focusing on healthier snacks (not necessarily all fruits and veggies, just not all sugary sweets). And it was actually helpful to my blood sugar, which was an unintended but very welcome side effect. It wasn't dramatic, but a little is great, better than no change or negative change.

Only problem: I lost a ton of weight! I'm too skinny already and have a ton of weight and eating problems already because of my stupid, ill-functioning guts. I miss the part of my life when I was able to eat with no problems and the only issue I ever had was occasional lactose intollerance.

Now, I've lost 7 lbs in a couple weeks, my appetite is dwindling and I'm afraid of what's going to happen if I start eating junk again. The lack of appetite always happens anytime I lose any weight, so I know I just have to force myself to eat until I gain the weight back. But I'm having swallow issues again. And I gag on everything because my appetite is so poor right now. So I gave in and got fast food tonight, because I was craving a burger, and if that's what I was craving then that's what I was going to have. And I'm going to have the other half of it at work tonight.

And I also bought Glucerna shakes and snack bars. Which was incredibly EXPENSIVE! $30 for 2 6-packs of shakes, and 2 4-packs of bars. And that'll only last me about a week. Holy crap. But I've come to the conclusion that my body is going to cost me a lot of money :P

Hopefully I can do the Glucerna without as many blood sugar spikes/crashes and get my weight back up (I had been drinking Ensure Plus before I cut out the sugary snack at work, but those aren't balanced for people with blood sugar issues).

So, here's to hoping the next couple weeks will bring about some good change!!

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Tomorrow is my drug testing and fit test for my new job. Obviously I don't have anything to worry about the drug test ;) But I am hoping my body will keep it all together tomorrow long enough to pass a fit test. I've done several of these before and they're all a little different. There was one I did several years ago that was very detailed and very intense (they gave the same one to everybody, so it had to cover a lot, rather than just one department), and I'm certain if I was to take that again, I would have some problems (there's a pinch test that I couldn't pass before, and I know I would do even worse now...my fingers are just getting bad...I really want ring splints) and the one that required me to squat down and balance on my toes was hard then too because my toes are way too bendy, especially when I'm trying to balance on them for long periods of time with absolutely nothing to hold on to. But then the one I took a few months ago was nothing more than some range of motion, a leg/back strength test, and a transfer test (75lbs of free weight from one location to another, with good form). So we'll see what they want me to do tomorrow. If it's as intense as the first one, I may mention that I have EDS (if I can't "pass" part of it, like the pinch test) so that they don't try to put me into therapy or inappropriate braces to fix my problem (they will, if you can't pass part of the test). But we'll see what they're like first.

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I had a curious thought the other day. I work in health care. Where we wash our hands and use hand sanitizer 12 million times a day. We're only allowed one ring/ring set per hand (mostly this is to allow people to wear their wedding rings/bands, but otherwise, they'd prefer the other stuff be left at home) and fake nails are not permitted. Since ring splints are a doctor prescribed orthotic device to provide better function, therefore, a workplace can't tell you to remove them (it would be like telling an amputee to remove their limb, or a patient with CP to remove their AFOs), what kind of issues will it create? Because I'll have a dozen or more "rings" to wash under each time I wash my hands (I know right now I need support on each DIP joint -oval 8 rings would be just fine with me, possibly PIP on middle fingers, both thumbs need support, and a buddy ring for my little (4th) fingers to keep them from flying out to the side as freely as they like to). It could be interesting.
All this said, I don't care what they make me do, as long as I can get them, because I know I would see a world of change if I had more support for my hands/fingers. And work is the place I need them most.

I'm done rambling....mostly because said hands have had enough.... :P

Weekend of win!

More like week, but who's counting?

My best friend got married over the weekend. It was INCREDIBLE! The ceremony was beautiful, she was even more beautiful, and there was more love floating around than anybody could ever take in! Fabulous!

Thursday morning, I went to the doctor for a follow up on my meds and stomach issues. Gonna stay at my current dose of Topamax (50 mg twice a day), since my memory isn't as sluggish anymore and the cobwebs in my brain are starting to clear. Still having some mental delays and trouble coming up with words sometimes. I'm hoping it's just a matter of more time, because it's beyond frustrating when I can't come up with normal words in very important situations (trying to give report to a nurse when I can't generate a word or phrase is ridiculous, plus people look at you like you're nuts). I'm having headaches again, but not like I was 3-4 months ago, and not full-blown migraines. At this point, I'd rather deal with weekly headaches than trying to switch meds. That's just a scary thought to me. Knowing what I went through to find one that worked the first time....
We also talked about my stomach and the conflicting consultations. It came down to me needing to go in and see the specialist. Because just looking at my scans means nothing when there's not a patient attached to it. Which I know and understand. So I called and got an appointment made as soon as I got home.
I went to Matt's after the doctor, showered, and slept. We had supper and left for KC. Got to Kat and Adam's before 10, chatted for a while and went to bed. (our air mattress deflated halfway through the night and Matt jumped ship lolol)

Friday, we drove from KC to Omaha. Talked, rested, rehearsal, dinner. Picked girls up from the airport, went to buy alcohol and went back to the house for a mini bachelorette party (there were 3 total for this wedding, because of the widespread geography). 10 girls packed into two rooms (we were staying at the groom's family's house, girls upstairs, boys in the basement, parents and the rest of the house in between), it was a blast. Went to bed around 2.

Saturday, people started waking up at 5 (that's when I heard the first shower). I woke up at 6:30, went to wake the bride up at 6:45 (squish!hug!kiss!), we all quickly got ready and headed to breakfast. Amazing breakfast (country kitchen with fresh ingredients and beautifully made food). Hair appointments started at 9. We got a little rushed during hair. There were several of us with very thick and long hair who took longer than expected, but we still had the bride and all but 3 of the girls back at the church by 11:15 (and the bride had done her makeup at the salon while the others were getting their hair done). Got the bride dressed, talked to the photographer, and started taking pictures. Just before we started, the tears started. Everyone was dressed, and looking at the beautiful bride in her white gown, and it just got real; it was pretty awesome. It hit everyone right then. Prep and pictures (LOTS of pictures) for the next couple hours. While the bride was doing family pictures, the bridesmaids managed to sneak a 15 minute nap in the bridal room (at that point, it was 3pm and we were running on no sleep, and no food or drink since breakfast -a granola bar and sips from the water fountain don't count - so we were exhausted). At 3:30, the whole bridal party closed themselves in their rooms (the boys were down the hall), and waited. A great prayer and a few more tears and we walked to the sanctuary to line up. The ceremony was beautiful. And my best friend, the goofy girl I love so much, was dancing around on the altar while she was saying her vows. She dances around when she's happy or excited. The fact that she was in a wedding gown did not change that. She reverts right back to that happy little girl! Me and the other bridesmaids all laughed. After vows, a kiss, bubbles, church cleanup, and more pictures, was the reception! A fabulous party! Great speeches, great food, great fun time!!! They made $150 at the dollar dance, my boyfriend was talking to my best friend about rings while they danced, I danced until I hurt (that didn't take long)....dancing was a great part of the night! Bride and groom left around 10:30, we jumped in on the cleanup shortly after. Bed around 12:30 or 1.

Sunday we woke up and had breakfast and waited for the newlyweds (as I expected, they were much later than they planned *nods approvingly*). Talked for a while then they opened gifts. Then everybody started heading out around noon. Very long drive home. Nearly 9 hours in the car....every joint in my body hurt. Hurt. Hurt. But it was worth it, for the wedding, it was worth it. And me and Matt passed the time and made lots of good distractions along the way.

It was all so fabulous!

Today, after much sleeping and unpacking and cleaning, I went to the gastroenterologist. We talked for all of 10 minutes before he was recommending surgery. He's going to send me to the university hospital for a consult. There's a surgeon there who has done the procedure (called a laparoscopic nissen fundoplication...it's an anti-reflux/hiatal hernia repair surgery) a lot and has an incredibly high success rate with it. Even though it's 40 miles away (there are 3 hospitals within 10 miles of me), this doc would be better. So I'm hoping I can get an appointment for a consult soon. They're going to call me tomorrow.
I was hoping to have this done before Matt had to start back to work, but it doesn't look like it's going to happen. He has to be back at the end of next week to start prep. But if I can get it done near the end of a week, my dad could stay with me for a couple days (I hate for him to have to sacrifice his vacation time) then Matt could stay with me over the weekend. Hopefully I won't need much baby sitting after the first 3 days (it's the narcotics and lack of eating that do me in).

Anywho....I'm sure there will be more when I find out about dates and times and everything revolving around my stomach. And I still have that rheumatology appointment to deal with in a couple weeks as well. [A nurse told me today that I'm too young to be having joint pain, in reference to the hinged knee brace I was wearing. I absolutely hate it when people say that. I realize I'm young, I realize I shouldn't be in pain so much for my age. But that doesn't change the fact that I am. Saying things like that is just stupid and makes me feel bad.]

For now, just more days in the world.


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And praying for a friend and her family. I think about everything I have gone through with my health and what it costs, even with insurance. Now they're going through something terrible, and they have no health insurance. I can't imagine ever not having health insurance for that reason. But I hope they can stop worrying about their finances for a while and just focus on their family and mending fences. Because things are very fractured for them right now.


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Live, love, and prayer all around.

PMS fail

I started my period a few days early. Which is fine, I kind of wanted that. I don't want to have to think about messing with it during the road trip and wedding next weekend (I can't believe the summer flew by so fast!!! my best friend is finally getting married!!!). But. Now I feel absolutely crappy. I've been nauseated for days as it is. And the wicked first-day cramps have set off a small bout of IBS. Not bad enough that I want to subject myself to IBS meds, because I really hate being snowed. So my options are pain, nausea, cramps, the works, or drug-induced zombie-state.

Fail. I took Tylenol (my friend as of late, sorry liver, you have to deal with it), and made myself eat something, much to my stomach's dismay. And I feel slightly better.

Chatting with friends and watching Friends definitely helped too.


I'm trying to do some writing too. The muse finally came back to play. But my hand is having none of the pen and paper action. The muse is not quite as pleased with the computer....she's old school tonight I guess. But I'm making it work. Because it's either type or keep the plot bunnies caged away until my hands are less achy and I'm off work again. Likely that neither will happen any time soon.


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Time for some ranting. Going to keep this short and sweet because I'd rather be writing, but I know me, I'd like to have my thoughts down.
I was trying to get a referral to the GI doc and surgeon to get my gut taken care of before I switch insurance (at the broker's suggestion, as he thinks it's unlikely I'll be accepted to a new plan with a pre-existing condition, or they just won't treat it for 12 months if they do take me, I don't like either option) and before Matt has to be back to work. Seemed like a good idea in theory. Until the GI doc here said that my scans don't even show that I have the hernia that I was diagnosed with. I have no idea how that's possible. There was a lot of phone tag and relaying messages through the receptionist at my GP's office (I wish I could just talk to the woman). But basically, they say there's nothing there and certainly nothing that would need surgical intervention.
WTF?!
Since I was scheduled for surgery for this last year, I'm more than slightly confused. The only reason we didn't go through with this surgery was because I seemed to be doing okay after the gallbladder surgery. But that changed and now I want to go back to the original plan and have the anti-reflux surgery. I certainly wouldn't want surgery if it wasn't indicated, but I can tell you for sure I'm not healthy. The amount of Prilosec and Tums I take in a day, along with my diet can vouch for that.
So my GI doc's office is supposed to be faxing over notes and records, as is my previous surgeon. And I have an appointment with the GP on Thursday. Matt is insisting on going with me. And I'm very glad. Because I'm tired of trying to convince people of this. I'll be happy to let him. We both know my life would be better if I had less reflux on a daily basis. If I could eat even semi-regular foods once in a while, if I choked less (23 year olds shouldn't be choking at all, certainly not on a regular basis), if I didn't have to take a butt-load of meds to feel fairly functional (just from a gastrointestinal point of view...there are other meds on the list), if I didn't have to sleep with the head of my bed up on risers to slant it and a wedge pillow to incline me even more (because I refuse to still be using that damn wedge after I get married!!!). This is not normal, and I know it's treatable, likely even fixable. I'm fine with having to modify my diet for the anti-reflux surgery if I have to, if that's all I had to deal with. That would be one thing to make me comfortable. Not ten thousand. And those don't even work half the time.
We'll see what the GI doc's notes say and what my GP has to say at my appointment on Thursday. And I will try not to worry about it too much after that.
Because Thursday, I'm going to go to Matt's, shower, sleep for a while, and hit the road. We're going to have 4 fabulous days off together to see my best friend get married!!! I can't wait!!!


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For now, I go back to feeding the plot bunnies and entertaining the muse.