Straight to the point

Since we all know EDS and skin issues tend to be very hand-in-hand, does anybody else have issues with what is essentially really bad diaper rash? Any time I can't let my skin just breathe all day (meaning, going commando and wearing loose cotton pants), I wind up with a sore behind and groin. I did a 5K walk today (GO ME! also, not the wisest decision ever, but I'm too stubborn for my own good) and there was just enough warm air and humidity for me to be slightly sweaty. By the end, I felt like my underwear was made of razors and basically every part of skin covered by my underwear was on fire. My skin was so chapped that it was open and bleeding for a while too.

I HATE that on the list of things EDS does to my body, humiliation in the form of literal pains in my ass has to be added to the mess.

On the plus side, my legs are finally starting to do better from my braces. I went through weeks of itching, scarring, bleeding, repeat, before the scarring was a bit more callus like in that it's protecting me now. While I'm not thrilled about scars, I'm glad that my legs don't bleed or feel like they're on fire so much anymore. And the braces are really making a remarkable difference in my balance and leg pain.

Now I just have to deal with the back/neck/shoulder pain that seems to want to stick around and be besties and the sciatica that I can't ignore any longer (it's one thing to notice it once a month or so, it's another entirely when it's at least 50% of each day). And of course the dysautonomia "flare up" that seems to like me the last couple weeks - I'm going to ask my about possibly finding a potassium supplement that would help with that though, as it seems to be the cause of most of the issues....if I drink a bucket of Gatorade and eat bananas, I fare better than when I stick to water and clear soda, and we've already noticed that my potassium runs on the low end, which might be enough to be setting me off.

There's always more to say, but I'm tired. My nap earlier didn't quite help the yuck feeling I got from being outside half the morning. Good night's sleep is the cure I'm hoping for.

Until next time, hugs and spoons to everyone!

Thanks EDS. I appreciate the constant love /sarcasm/

Been having wicked pain between my shoulder blades that moves up my neck, around my jaw, and even into my forehead. After about two weeks of muscle relaxers and occasional narcotics (I have to take ibuprofen and zofran before I can take a single pain pill, so I try to avoid the added meds if the muscle relaxer will do it), I decided it was time to see the doctor. I don't generally have this kind of pain in this area, so I wasn't sure what was going on (I hesitated to think I could have subluxed something and not known it).

Called the doc, she got me in within 36 hours. When she walked in and asked what was going on, my simple answer was "I think my EDS wants to kill me again." We both laughed and then I proceeded to tell her what was going on and she did a physical exam of my shoulders, neck, and face. No obvious deformities, but she agreed some x-rays couldn't hurt. She also gave me a full fill of zofran and more muscle relaxers, as well as some "desk stretches" that people who work in front of computers use and she thought might help me (my work doesn't involve sitting in front of a computer, but she thought they would be easy and effective).

I love my doctor for trusting my judgement and not brushing me off with my crazy EDS stuff. She's FANTASTIC!

I didn't get a call yesterday about the x-rays so I'm assuming there was no issues there (or if there was, they resolved before the pictures), so now it's just a matter of comfort and hoping the pain goes away on it's own.

Dear new pain, PLEASE go away on your own. Soon. Love, me.

Hope you all have spoon-filled days! It's almost Friday!!

Happy week, and some shtuff

Exciting news from Saturday: I GOT MY BRACES!!! Custom fit, custom built. From the time I asked my primary for a referral to ortho to the time I was donning the custom built braces was less than 2 months. INCREDIBLE. And my insurance covered them completely! No copay, no deductible, nothing out of pocket. I couldn't believe my good fortune when I heard that!

And I had no idea just how crazy my left knee was until I put these on either! Sheesh! That thing is at a very unnatural angle. But the good news is that the braces will help prevent more "drooping" inward. And most of all, they stop hyperextension and support the entire joint when I move. Less balance trouble, less falling, more strength (same strength, but now I can use it more properly), more comfort, less pain.

In addition, because I don't hyperextend my knees in the braces, I don't hyperextend my back as much when I'm standing in them.

Did have a small setback yesterday. While I've worn the braces for at least 8 hours every day since I got them, yesterday was the first time I worked (a full 12 hr shift) in them. Between the added moisture (sweat! life 4 floors up in the summer!) and the added friction from rigorous work, my skin is very displeased. Very. When I took them off last night I had blisters and irritation in the lines between the pads, kind of spider web-ish. After showering and sleeping (I was scratching in the middle of the night, I know I woke up and got a baby wipe at one point to just wipe my skin with something cool...it was like fire in my skin), it looks better this morning, but the movement of just walking is enough to irritate the open spots. So I was intentionally very lazy today. If I give in and give my body the time to heal, I can pick up again sooner. I have a doctor appointment across town tomorrow, so I'll have them back on for at least 4 hours. I probably won't keep them on once I get home...just not worth the torture; skin needs to breathe to heal.

And this weekend, I'm going to have to minimize how long I wear them at work. I may do the shift in thirds, wear them for the first 4 hours, off for 4, on for the last 4 (first and last 4s are the worst anyway). I know my skin will get used to it eventually. Just gonna take some time.

In other news, finally off light duty from the wrist/hand sprain from last month. I saw 3 different doctors in 4 visits at the work comp clinic. Continuity of care much? The first doc was great, agreed that my hypermobile/loose joints saved me from a crush injury (I prefer a nasty sprain to crush fractures). Second doc admitted he knew very little about EDS but that he'd read my file, tested my mobility and asked me what I thought as far as work and restrictions. The third doc didn't believe that I had EDS, that my hand dislocated when my patient grabbed me, that anything I said was true. Very frustrating. But he still listened to my suggestion that I needed another week of modified duty before I returned full duty. I hate those situations. I get that people haven't heard of it, and I'm more than happy to help with my end of the knowledge, but people discounting what I say and refusing to believe me just because the disease is rare, that's just ignorant.

And now I'm back to itchy irritated skin, so I'm gonna sit back with something cold on my legs to make it stop!

tired, the word my body is looking for is tired

So, fun couple weeks. A week ago Saturday, spent about 12 hours puking my guts up. When I couldn't take it anymore (I was in PAIN! I though something was seriously wrong), I had dad take me to the ER. Because of the hour (not quite 5 am) I got back quickly, had an IV started and fluids running, Zofran and Dilaudid on board within 30 minutes. Continued getting Zofran every hour, as well as a second dose of Dilaudid after my CT scan. CT showed a good amount of inflammation and irritation in the stomach, small, and large intestines. I had a wicked stomach bug, nothing fatal, just painful and annoying.

So they pumped more fluids and meds into me (I continued to throw up despite the nausea meds...to the point I started bringing up bile because there was just nothing left...that was painful), and sent me home with lots of meds (antibiotics on the off chance it was bacterial, because we needed this gone, two nausea meds that way I could rotate them and take them more often - instead of just taking a single Zofran every 4-6 hours, I had Zofran, then Phenergan 3 hours later, then another Zofran 3 hours after that...that way I also stood a better chance of having relief if I threw one up - and Vicodin for pain, which I pretty well held off on because narcotics make me nauseated and I didn't really need any more help throwing up or feeling gross).

Felt better once I started keeping food and fluids down again. But about 10 days later, I'm still having a bit of a feeling that my gut is inflamed/irritated.

But, all that said, feeling so much better now.

TMI incoming (poo talk, you've been warned)

But the antibiotics and funky diet really upset the flora in my gut, which led to a week of frequent poo, and very soft sticky poo. Which has led to hemmoroid flare ups that itch and burn, and very raw skin around the same area. I had been using over the counter hemmoroid cream for comfort but the constant moisture was making the small area of raw skin much larger and much more irritated. So I stopped, took a pseudo Sitz bath (I don't have the basin, so I parked myself in a shallow lukewarm bath with Epsom salts), used a pH balanced cleanser specially made for peri-anal care, made sure everything was dry, and put cornstarch on my butt (glamorous). It was doing better, but it's been warm out, and as my body does prefer the warm temps to the cold, I've been getting some sunshine time in, which leads to more moisture in areas where skin touch, and then to the raw area finally peeling and bleeding a little.

All in all, I really just wanna walk around a cool house naked all day with cornstarch in my crack. Can't do that, but if anybody knows diligent backside care, it's a nurse assistant, yes? I've gotten over this in the past, I can do it again!

--

So, next day here. I was in SOOOO much pain last night I couldn't keep going. That's been an issue for the last couple days. I wake up feeling a little achy, and by the middle/end of the day, I'm in so much pain I don't know what to do. I did take Vicodin the first night, but then I wound up with a headache after the pain was gone (narcotics are contraindicated in migraine sufferers, it was bound to happen). I didn't want to take more narcs last night so I popped a few advil and stretched out in a nice cool bed (window open, naked, cool sheets...it helped....while cold isn't usually soothing for me, this wasn't a shocking cold and it seemed to calm the burning sensation I was having in my muscles and joints, plus just laying down hurt, since I had been sitting up and fighting it for so long).

Hate pain days. I'm hoping some light activity and going to bed earlier tonight will help, since I have to work Thursday and Friday (still on light duty from a sprained/dislocated hand).

--

I'm planning to move back home. I really don't like the idea of moving and starting over with so many things yet again, but I need my family and friends and support that I just don't have here. So I've talked to my mom and we're going to look into housing and jobs and things. And I'm looking at a different degree program. I think part of the problem with my lack of urgency to finish this one is because I don't actually think I can physically do it. I could know the info inside and out, but that wouldn't compensate for the fact that spending multiple days on my feet for 8-12 hours and still having to keep up with homework and a regular job. So I am looking for something that would be less physically taxing that would help me out financially (I won't be a computer programmer millionaire or anything, but a certificate in billing/coding would at least provide me with close to twice as much per year, and I could still decide I like something else later and continue my education further for that).

For now, that's all I have. Trying to figure out money and houses and jobs and all kinds of messy stuff.

A friend in need is a friend indeed.

I try not to be antisocial/asocial, but at work, I just don't have a lot of friends. I have acquaintances, and we're all pretty friendly with each other, but I don't really spend a lot of time chatting with everyone and making plans to go out and do things.

We all know a little about each other, we spend a lot of time together, and it's still like family, whether we're all best friends or not.

My EDS/disability is no secret at work. It comes up a lot (I have a physically demanding job, my body protests this throughout the day, so people know). But we all know that having a disability, being sick a lot, being different like that is hard to connect with other people.

While I was on sick leave in Jan/Feb, one of my co-workers was also sick. She found out she has lymphoma and has been doing the cancer dance ever since. She had a biopsy done in her neck, so she has a scar there that people see (she's been wearing t-shirts that are cut high to try to cover it at work). She's on chemo now too.

She doesn't really talk to anyone about it. She doesn't want the attention, and everyone has been respecting that. She told people she was sick just because it was getting hard to hide and when you work in the job we do, it's best to let at least one or two people know that you've got serious stuff going on.

But she doesn't talk about it. She's very private and just wants to get better without people gawking.

....Yesterday at lunch, the two of us alone behind a closed door, she talked about it. Willingly. Comfortably. I don't have cancer and she doesn't have EDS, but, we're both sick. And I think that's what she was looking for, someone to relate to, someone who would get it. We're not best friends, and this won't change that, but I'm glad she talked to me, that she felt like she could talk to me.

It's hard going through illness and disability alone, but it's just as hard to know that people don't get it. I felt pretty special to be her listening ear, I'm sure she needed it.

You never know what life will throw at you (because a young woman, a single mom, going to school and working full time shouldn't be the one with cancer), but it's wise to always make sure you have friends who will be there for you no matter what.

I hope she recovers quickly, that the chemotherapy will rid her of her cancer and that she can get back to feeling good again (she puts on a good front, but she's tired). And I hope she knows that if she ever needs to talk again, I'm always there. Not easy being sick, but it's a little easier with friends.

Post op, and other fun of a bendy body

Things have still been great since surgery. I'm not having the spinning and near-syncope and weird and horrible crap that I was before.

But I have had some new stuff (or stuff I didn't notice before). I've only had two very small dizzy spells since surgery, which is great compared to before. I've been having issues related to my heart rate and blood pressure. My heart rate has been higher since surgery. In the 80's on average. So it takes less time/activity to raise it to 100, at which point I start getting jittery. And my blood pressure has been a little higher. 130/80 ish. While that's not a scary number, at 24, my diastolic number shouldn't be 80. And both numbers are at least 12 points higher than they were before.

This leads to jittering, body temp regulation issues, some trouble getting to sleep...it's not fun. It's worse on work days because I'm on my feet, so my body is stressed. But all the same, it's not easy to deal with. I follow up with the surgeon soon and I'm going to bring all of this up and see what his suggestions are.

I've been back in PT and it's been great. Learning a lot of exercises and ways to move without killing my body and dislocating joints. When I'm done with PT in a couple weeks, I'm going to join a gym to keep up with it and do other exercise as well (they have a pool!!).

Work has not been great for my pain. Seems like it gets worse every day. It's lower body more than upper body - because lower body has to take on the work of holding/supporting everything - and it gets to the point where I can't walk at the end of the day. I really don't like that part. I've been taking muscle relaxers on bad days just to get some rest when I get home at night. I have an appointment with an orthopedist next week and I'm really looking forward to that. I don't know how much he'll be willing to do, but I gotta start somewhere, and his nurse made it sound as though he was willing to give it a try (because she wouldn't even schedule me at first because she wasn't sure if the doc had worked with EDS enough that he felt comfortable with it, he had to think on it for a day before saying yes, which I do appreciate).

And this morning my mom said that maybe someone at the EDNF conference this summer would be able to lend some pain management insight. And yes, I was hoping for that, but it felt good to hear it coming from her too. I know that she takes my illness seriously, but to hear her getting involved made me feel a little better just because not many people know what the hell to do with EDS, much less try (doctors, family, friends, it's endless). So my mom thinking proactively was a cool moment for me (because I think that's the first time I've ever really had anyone be first to think proactively before me about my EDS...I know I'm constantly thinking about it, but it's nice to know when I'm not the only one).

I'm just about to the point in my day where the pain is creeping up and not stopping, so I should vacate my chair in protest now....

Little update, from the comforts of a restful day

So, in the hospital, I was taken off the calcium channel blocker the next day and a cardiology specialist (an electrophysiologist) visited me. He and the attending cardiologist discussed my case and thought I should know my surgical options.

Doing something called an electrophysiology study would help map the heart and show where the problem was, allowing the doc to ablate it. I agreed that it was worth trying, especially if it was successful and could free me from symptoms and meds.

After that week, I never improved and I remained on medical leave, on near bed rest, while I waited for surgery.

A very LONG 6 weeks spent sitting in my recliner or napping (I tried to keep the bed rest/napping to a minimum...it was bad enough that I couldn't walk to the bathroom without feeling faint, but I didn't need my heart getting weak from positional change as well). I gained 12 lbs because I was getting absolutely NO exercise - I let the dog out to pee 2-3 times a day and microwaved food a few times a day, but that was it.

My parents came into town for surgery. They picked me up the night before, I went to the hotel with them, and they took me in early for surgery.

I got in at 0630, went through pre-op tests, labs, questions, etc. Busy morning. And a very helpful and committed group! They answered all my crazy questions and did everything they could be accommodating to my EDS and other concerns.

I was taken to the procedure room at 8 and a thousand stickers for mapping, monitoring, and cardioverting were stuck to my chest and back. My fluids and potassium were started, I was given an oxygen mask, and finally, a fun little cocktail of propofol and fentanyl (it's hilarious because I knew this time what to expect from the propofol...you only get a second to experience it, but there's a wicked floating, tingling, spinning sensation right before you drift off, and you wake up very quickly afterward).

My parents were given an update at 11 that the trouble was located and two spots were ablated. I was waking up as I rolled into recovery at 11:50. By noon my eyes were open, no oxygen, and I was talking (poorly...because the intubation really did a number on my throat). I was also shaking violently. I was conscious, not cold, not in pain, but my body wasn't ready to wake up without a fight, so I got some additional fentanyl to take the edge off and was much more comfortable after that.

So then I just had to survive the bedrest part of the recovery. Perfectly flat for 5 hours. Not something EDS joints want to hear.

By the time the 5 hour mark was nearing, I was being wheeled to a cardiac floor for a couple hours monitoring. And I was in pain. And I had to pee. And especially that I had to pee (my belly was distended and it HURT). I tried the bedpan in recovery, but between laying flat, anesthesia, and being cathed in surgery (so I wouldn't wake up with a full bladder), I was very unsuccessful. Even after I got upstairs with an additional half liter of fluids added to the 1.5 I'd had already so far, it took me a while to go on the bedpan. I didn't empty my bladder until I got up though.

Then I got to eat. And lo and behold, I was ABLE to eat. So apparently a lot of the stomach and digestion issues were hidden beneath a heart issue for a long time. (granted, I'm still adjusting to a lot of foods and things because I haven't really eaten much in the last 2 years)

Got to go home that evening with a prescription for aspirin to help the vein and artery heal, orders to take it very easy for 5 days, and return to work in a week. First couple days were rough because not being able to bend and twist and get comfortable in weird EDS ways was painful. But once that was over, I was great.

I went to my GP and got a new script for physical therapy, and was able to get in my first session that same morning. So I returned to work Sunday with no restrictions. It was certainly a rough day given how sedentary my life has been this year, and because I started my period (I don't have periods anymore, so this was not expected nor well-tolerated), but I survived it. I was in a TON of pain, but I survived it.

I'm still having some issues with my heart, some mild palpitations a few times a day, and my resting heart rate is much higher than it's ever been (about 80), so any activity brings it up quickly (yesterday that was irritating because I start feeling jittery around 100 and I was busy enough that it was up most of the day). But given that my heart has been through the wringer, I've gotta give it time to adjust before I go getting worried. Every surgery has a recovery period.

Other things related: I had my doc do some blood work. I stopped taking my vitamins a few months ago because my GI doc was finding minimal signs of malnutrition/malabsorption and taking a junk ton of pills every day was only contributing to the nausea. So I stopped. And asked my doc to check to see what was necessary and what I could do without and in between. I know I need magnesium back. Bad. I've had constant muscle twitches/tremors/spasms for months. But I don't want to go popping a ton of mag if a little will do the trick (mag is very nauseating).

Got back into PT, as mentioned. I was only in it for two sessions before I had to be discharged for medical leave. For my initial eval the first time, I saw a part-time/fill-in named Jen. She did all the fun "getting to know you" stuff and set up my treatment plan. For my second session, I saw my regular PT, Laura. This time, Laura got to do the initial assessment. And boy did she have fun with it. She's never treated someone with EDS before. She got a kick out of the fact that she didn't have to strain to get normal range of motion out of me, and that I just kept going past normal. I told her I was made of rubber, but she just didn't believe me HAHA So we got me all lined up with a plan, and she referred me to a hand therapist for the tiny joints that need some help (she said she doesn't do anything smaller than simple wrist fracture therapy, anything smaller, she sends to better specialists).

I'm also seeing an orthopedist next month to evaluate for braces, splints, and other external joint support. I'm greatly looking forward to this part of the process, because I think there would be a lot less pain in my lower joints if they could support any weight without bending in 8 wrong directions. Plus, I need them to not be so worn out this early in my life. I have a lot of years left and I can't be killing my joints in the process.

I've been signed into blogger for quite some time now trying to get this all written and chat at the same time. So I'm going to resume my restful day (first day back at work after 7 weeks of sitting will take it out of anyone) and chat for a bit longer before I tell myself that bedtime must be reinstated (it must).