Saturday, July 31, 2010

Better days

I was exhausted last night, opted to sleep at night (mixes up my sleep habits for work, but I sleep better at night). Had to ditch my wedge pillow halfway through the night because it was making my neck/shoulder more uncomfortable.

But I seem to be doing a little better today. Still aching, but less nauseated (which helps SO much). And tylenol is actually helping the pain today.

Last night when Matt came over (he brought me risotto from a super yummy Italian place on the hill) he said he used to get something like this from boxing. Boxers and football players call it a 'stinger'. Basically just a pinched nerve. Which is why it wasn't going away like a kinked muscle. Though I still don't know how I did it in my sleep. I'm a wild sleeper though. Especially because I can't get comfortable on that wedge. I'll be so glad when I can be rid of that thing.

At any rate. The nausea is less (in general and when I move my head) and the shooting pain in my skull is less. Still a lot of aching in my shoulder and neck and jaw and ear, especially when I eat (chewing and swallowing and subsequent choking and coughing works a lot of still-irritated muscles).

Hopefully work tonight won't be too bad. I was planning on going to urgent care this afternoon and getting it looked at, but I think I'm doing well enough that I don't need to now, especially if it's not something they can do anything about. So I'll just keep taking tylenol and icing it at work tonight, and then I have tomorrow night off again to rest.

Plenty of yummy risotto and more Friends (and a nap later before work) will definitely make this day good :)

Friday, July 30, 2010

Dear neck pain, I hate you.

I woke up with a stiff neck yesterday afternoon. I stretched and twisted and it didn't loosen up....I had kinked it up while I was sleeping. No big deal. Everybody gets a crick in their neck occasionally. And it always goes away when I go to work because I get to moving around and it loosens it right up. Wonderful. No worries.

Except that it didn't get better at work last night. It just kept getting worse. It spread all the way up into my skull (not a headache, still just musculoskeletal pain, but in my head now, as well), and my jaw, and still neck and shoulder where it started. I was so bad that I had to go home from work early, my charge nurse insisted on it, she didn't think I was going to make it any longer.

Sleeping didn't help any either. Hot shower when I woke up felt good, soothing. But I'm still in pain. Can't move. No range of motion at all. Over the counter pain killers aren't doing much, I'm about ready to move onto the prescription stash. Which is fine, since I called into work...there was no way I was going to be able to work tonight.

I'm hoping if I just rest it and continue to mildly stretch every so often I'll be okay tomorrow. Otherwise, I'm going to find a clinic to get an x-ray. Because this is unusual pain. For me, for this location, take your pick. It just doesn't seem right.

For now, I've found a semi comfortable position, I've got a snack, and Beary Long squished under my arm. And Matt is bringing me something for supper later. And I've got 2 more episodes of Friends on this disc before I have to get up ;)

Wednesday, July 28, 2010

Pain, pain, go away

It was so bad I could barely stand by the time I left work.

And my balance has been really bad lately. Especially at the beginning and end of my days (not so much morning and night, because that's not where my day distributes). I almost fell standing from my chair at work this front of the nurse. I had been complaining that I was really tired all night, so I think she brushed it off as that, but it wasn't. At least not completely. And by the time I got home, I couldn't walk at all without having to hold onto something. Showering in the morning when I get home is always frightening....collecting everything I need in the floor of the tub and sitting while I shower is very helpful. Certainly don't have as far to fall that way :P


Hmm. I really wish I had more molasses cookies. I just finished the last one. But I don't have another day off until the weekend. So I won't be going out until then. Guess I'll have to make do without them.
....I have granola bars with chocolate in the meantime ;) Now that's the sunny side of life!!

Tuesday, July 27, 2010

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'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.

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.


Live, love, and prayer all around.

Sunday, July 18, 2010

I'm certain I'll never learn.

I subluxed my ankle sitting on the end of my bed (with the intent to fold my leg and sit with my foot under me on the bed). Now I have pain from halfway up my shin all the way down to my toes.

Go me. I'm totally going to bed early this morning. That fixes everything.

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.


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.
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!!!


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

Tuesday, July 13, 2010

Gotta start somewhere

After seeing a million and one blogs for people with EDS and other pain diseases, I decided I might as well do the same. It might help me keep my thoughts straight. It might be a good outlet. It might just be a lot of random ranting some days. Whatever it is, here it is.

I've had pain for as long as I can remember. Longer, actually, since my memory kind of sucks these days (I'm sure that'll come up again later). Everyone always told me to toughen up or suck it up or stop whining or that I was a hypochondriac. I gradually stopped talking about things that were bothering me. Sure, I was still sick more than most (colds, flu, injuries, etc), but I didn't talk about what I was really feeling, especially as I got older. But I still felt like something was really wrong and I was sure if someone knew about it, they would tell me there's a name for it, or at the very least, that they believe me, and that they don't think I'm just a wimp.

I think that's what bothers me the most. People think I'm being wimpy and weak and still call me a hypochondriac. My brother used to tell me if I would just go outside and actually do something, I wouldn't be sick all the time. But I never (physically) felt like going outside. My parents always told me to just go out with friends and do things and have fun and the shyness would go away. That might have been true, but I was still never comfortable and ached and things just never felt "quite right" somehow.

In college, I learned about something called Munchousen's (sp?) syndrome. For a while, I started to wonder if maybe I was just crazy and attention seeking to the point my brain was making my body feel things. After all, most people who have that have something in their history that set it off: a childhood illness, a family member with long-term illness, etc. Knowing I spent time in the hospital as a kid (heart defect, repaired when I was 3), was I just going crazy? But then how was I so rational about it? And Munchousen's patients tend to be subtly extreme: they research and find all kinds of ways to make themselves sick/hurt to get attention, without making it obvious that they're doing it intentionally. I never actually hurt myself. And I never wanted attention. I actually don't like the attention.
I plead temporary insanity on that one. Looking desperately for an answer will make you see Jesus in more than just a grilled cheese sandwich.

But I knew there was an answer out there. Whether I would find it or not, that was another question.

Pain got worse as I got older. I continued to ignore it. Occasionally, over the counter drugs, heat and ice, and bracing/splinting would help, but that's all I did. If anybody ever asked, I would blame the pain on work or the activity I was doing at school or something else strenuous (by then, I was a teen, and working as a nurse assistant in the summer, and involved in theatre and a few other activities at school, I liked to be active when possible).

In middle school, I noticed I hint of pain in my chest around the area where my open heart surgery incision was. Figuring it was from growing and the scar stretching, we (me and my mom) ignored it. A couple years later, we discovered the growth spurt had caused the sternal wires to stretch irregularly, and they needed to be removed. The pain didn't stop, though. It continued to get worse. For a few years, I went through therapies, treatments, a couple more surgeries, and everything else the doctors could think of to ease my chest discomfort. Everything showed that there was nothing physically wrong though, and that if I was actually feeling pain (yes, there was doubt from some as to if I was really in the pain I was saying...this is part of where I thought maybe I was just crazy, because people wanted me to think so), then I was just going to have to deal with it.
So I did. I was lead to believe there was nothing else to do.

In college, I get a job working in nursing care. A job I really enjoy. I get to care for people and help them, most in the last stages of their lives. It's a physically and emotionally draining job, but the enjoyment makes it worth it. But as the pain got worse, the enjoyment started to dwindle.
Again, I never said a thing. I love my patients and residents. And don't know what else I would do if I wasn't taking care of them.

A few years later, I'm 23. I'm in a new city, at a new job (same job requirements, different company). I work harder than every to disguise the pain I'm in. Some mornings, I get home in so much pain I'm in tears. And I sleep a lot more now. Part of that might have to do with the switch to night shift. I have good nights and bad nights. There are some shifts I breeze through and don't really think much about individual parts of my body hurting. There are other nights where I feel like my body is going to crumble, and I don't know how I'm going to make it until sunrise, much less through morning routine. And there are nights in between, where just a specific joint or group of joints hurt, very constantly for hours and hours.

It's not just at work, but work certainly exacerbates it. There are days I wake up in pain. There are days I have off and think of how great it will be to relax for a day, then end up feeling like crap anyway.

When I started working on my first manuscript a while back, I had an idea for a medical drama (of course, I'm me). There was a disease, on a long mental list, that sounded like it would be fun to research and fit the idea of what I was shooting for pretty well. So I started writing, and started researching. And researching. And researching.

And then the writing stopped. And the research became more intense. Things started sounding oddly familiar. This disease that was only supposed to be part of the story sounded like my life. I did some searching around for similar things and other topics, wondering if I was just reaching, grasping at straws, looking for answers where they really weren't. But this all looked too similar. Someone was writing about my life.

So I asked my doctor about Ehlers-Danlos Syndrome. I know it's not common. I know how strange it sounds to walk into a doctor's office and say you think you have a rare genetic disease, and that you back your theory up from internet research. But. I had to take a step. Because like I said, I stopped complaining a long time ago, so it's not like it's something anybody would have outright noticed. Especially because I don't think I'm all that symptomatic yet (my non-expert opinion).

My doctor asked a lot of questions (and in my nervous state, I had a hard time answering as articulately as I hoped I would), and proposed some ideas of her own (but did not throw mine out). We did routine blood work to check for systemic and autoimmune culprits, all coming back negative (lupus and rheumatoid arthritis were the big two we were focused on). She decided it would be best to send me to a rheumatologist, someone who specializes in joint pain and would be better able to define hypermobility, if that's what I have.
The day I got the referral packet in the mail (I was sent a referral letter with the doc's info, and I was supposed to make the appointment myself, for the purpose of easy scheduling), I was in an unusually intense amount of pain and already stressed out. When the receptionist told me that the earliest I could possibly be seen was in 2 months, I felt my guts turn inside out. But took that appointment (it will also be keeping me up past my bedtime that day, since I work nights and sleep during the day). After I hung up the phone, I broke down and bawled. A hard cry for a good 10 minutes.

Then sent my boyfriend a text message expressing my frustrations and venting. He called and offered to come over (he lives on the other side of the city) but I was starting to calm down and needed to get to bed, so I was okay just to talk to him then.

It's been hard going through all of this with him. I don't like being a sick girlfriend. I don't like that I'm not always comfortable in his arms (physically, that is...because always feel safe there). I don't like him worrying about me. I don't like that I feel like he pities me (I don't like anybody having pity for me). I don't like him thinking that I'm "sickly". I drew a short stick in life. That's all. God has this all figured out, and I trust that. But I know he doesn't understand. And that part is hard for me.

I haven't told him everything about this disease. On the off chance that I don't have it, that it's all some crazy coincidence and there's just something else wrong with me, I don't want to worry him that much just yet (already gave him a heart attack falling down the stairs last month...right in front of him). Don't want to worry anybody that much just yet. I have only mentioned to one other person that I suspect this. And I told my parents that there's a possibility that my joint pain is caused by a collagen problem.
Honestly not sure how I'm going to start the conversation if I am diagnosed. Going to leave that up to God, that's for sure.

.......I think I've just about poured my heart out enough for one day, and for one blog post. The only other thing I want to add is a list of symptoms (not all related to what I think to be EDS). I'm sure there will be more later; as I've said, I'm forgetful anymore.

From top to bottom:

Myopia (nearsightedness, severe)
Jaw pain, jaw popping and clicking
Gum disease and bad teeth
Neck pain, neck pops
Shoulder pain, shoulders are "loose", shoulders pop and click
Elbow pain, elbows pop
Wrist, hand, finger pain, fingers feel "loose", fingers and thumbs occasionally sublux and dislocate, fingertips (distal joints) are hypermobile, all pop and click
Chest pain (originally thought to be related to surgeries and the like)
Hiatal hernia, GERD, IBS, slow GI motility (on bad days, causes choking)
Hip pain, hips feel "loose", hips pop
Knee pain, knees (knee caps) feel "loose", knees pop...possibly sublux
Ankles: minimal pain here, but frequent popping, and the only joint that ever seems to swell or become inflammed (more tired and achy from working hard, it seems....)
Feet and toes pain, some popping (great toe L foot 'grinds and crunches'), toes feel "loose", feet/toes never feel anchored to the floor
Stretchy and smooth/velvety skin (nothing world record breaking...but...): neck, hands arms, ribs
Delicate skin: bruises that take too long to heal, constant bruising doing nothing at all, skin tears and scratches from doing nothing traumatic

Clumsiness, losing my footing when I'm walking or standing normally, losing my balance for no reason, dropping things that are secure in my hand
Forgetfulness (can likely be chalked up to a too-high dose of Topamax...)
Trouble sleeping, trouble falling asleep, trouble staying asleep, staying in bed too long/feeling tired and worn out all the time
Appetite changes
Hypoglycemia, diagnosed as reactive hypoglycemia years ago, but it's never been consistent (some days, sugar does nothing to me, other days, no matter what I eat, I tank)

Like I said, I'm sure there are more, but this is what I know right now. And I should be done with this now, because I have more to worry about before the day is through.