Health-related prayer requests

[ClaecElric4God]

Praying as ever, Sheena. Hang in there.

[Sheenar]

I'm hanging in there. Sleep has been wonky --I'm on my third night in the past 7 days of not being able to sleep. Hopefully will be able to soon.

Have been re-started on an anti-seizure med to help with nerve pain and the possible seizure activity I've been having. Doing okay so far a couple of weeks in --am due to increase my dose tomorrow. I'm still struggling with depression off and on, so please pray that the medication doesn't exacerbate that (seizure meds can cause depression/thoughts of self harm to worsen).

Found out my vitamin D is 30 points lower than it should be --so am to start supplementing. Praying that will help lift at least some of the depression and fatigue and having trouble with concentration.

Saw surgeon again. Still lots of pain in my surgery foot. It's started having sharp shooting sudden pain more often and buckling more often (I've almost fallen several times). Surgeon is having me wear a brace as a last-ditch effort to help with the pain and buckling. If this doesn't help, will need a second surgery. If I need surgery, it will be after I get back from Team Training this summer.

Having some trouble with widespread pain as well --but that's fairly par for the course. It will pass eventually.

Thank you for praying, friends.

[ClaecElric4God]

*hugs* Praying for you, Sheena. Stay strong in Christ.

[Sheenar]

Update: Brace did not help. Saw surgeon again yesterday. He took a new x-ray. Yep --bone is rubbing on bone again. Need another surgery. Surgery will be sometime this summer after I get back from Team Training. He wants me to stay overnight in the hospital after surgery for pain control and monitoring given the awfulness that was post-op after the last surgery.

I really don't want another surgery. This isn't something either my surgeon or I have rushed into or taken lightly. The pain is really interfering with quality of life --my surgeon said he could tell that I'm miserable.

I pray that this surgery will help give better quality of life and less pain --and help keep me walking for a bit longer.

In other news, I had an eval for a custom wheelchair at the big rehab center down in Houston --they are recommending a power chair that tilts --will help me get around more safely with the dysautonomia and Ehlers-Danlos stuff. Now we wait a few months to hear back from insurance on whether they will approve it or not. Please pray, friends --this chair would help so much. I have my mobility scooter for outside the home, but it doesn't work inside my home for getting from room to room (too long and bad turn radius) --I would be able to enjoy my home more fully with this chair. And I would have a back-up for if my scooter is out of commission (it is almost 6 years old).

I am having a lot of pain. I see my pain management doctor again on Friday. I'm praying that he will do something to help with this pain. It will be 2-3 more months until I have the surgery.

Still struggling with depression, but have been able to spend a little more time outside (when it's not really hot out --we've been having temps in the high 80s off and on) and that helps. I've gotten to sit on the patio and talk with neighbors a couple of times in the past week.
I broke down crying during lunch with people from church on Sunday --I've been so stressed and anxious and etc. that I've been pretty on edge. I'm so grateful for friends who respond with grace and love --and who meet me where I am.

It's been rough. But because He lives, I can face tomorrow with all its uncertainties, anxieties, and difficulties. I just need to remember that.

[anlptgtsg]

Praying. Take it one step of a time. Don't over-stress yourself than you need to be. Take care.

[Sheenar]

Thank you, anlptgtsq --I appreciate it.


I'm having a good bit of pain. My ankle hurts badly. Pain doc told me to stay off my ankle (he didn't prescribe any pain meds --just wants me to start back on Gabapentin for the nerve pain and prescribed a pain cream which should hopefully help) --but I have to walk to go some places (like going to work --my coworker doesn't have a vehicle that I can load my scooter into and where I work isn't accessible for the scooter --but is accessible for my walker) --and I worked this afternoon/evening (I sit at a desk and grade papers) --just walking to and from the car was really rough. I'm using my manual wheelchair to get around the apartment tonight because walking is really painful. I work again on Thursday.

I also rotated my pelvis again (Ehlers-Danlos thing that happens not infrequently). So am doing exercises to work it back into alignment --will take a few days.

Just having a rough night and prayers would be very much appreciated. I pray I can sleep tonight. Aide comes in 8 hours.

[Sheenar]

Have a sleep study tomorrow night downtown in the Med Center --followed by an all-day Multiple Sleep Latency Test on Wednesday (nap test --where I'll take 5 naps during the day). My neurologist is having me tested for narcolepsy. I have had issues with falling asleep randomly during the day since I was a kid.

Going to be a super long day tomorrow (have an appointment from 12-3, then going downtown) and Wednesday. Please pray I can actually sleep during the sleep study and that things go well --and they get the info they need.

Thank you.

[Sheenar]

Sorry I'm late in updating (and I'm saddened there has been no response --I'm struggling and am really just ... I don't know the word.)

Sleep study was rough, but I survived. Will get results in a few weeks, probably.

Saw my dysautonomia doc --my blood pressure and pulse numbers are good, which means the medications are helping, but I'm still having trouble standing for more than a few minutes without having the pre-syncope symptoms and feeling like death. Doc said that I'm likely still having issues with stroke volume (meaning my body is still struggling to move blood up to my upper body). He told me the priority right now is to get my ankle fixed and to then get into rehabilitation (aquatherapy, preferably) --in the meantime, I am to continue doing my home exercises. He hopes that, if we can help get my muscles a little more functional, then that will help my body be able to move blood better. I see him again in December.

I'm having my second ankle surgery on June 17th --just one week after I return with my new service dog. I'm still having a great deal of pain. Bone is rubbing on bone again in the ankle I had surgery on in September. X-rays done a few weeks ago confirmed this. Put off surgery until I get back with my dog. Will be away from my part-time job for a good while again in addition to the pain and difficulty of recovery (this is a much more involved surgery than my last one) --so will be a rough month+.

Power chair is still in the process of going through the hoops to get it approved by insurance. My primary care doc is going to sign the necessary forms today (I had my wheelchair eval at the major rehab center in Houston and they said I need x chair --so now my doctor has to sign off on the form in order for it to be submitted to insurance). Please pray that this goes through. The not-good manual chair I currently have to use is causing significant pain in my shoulders --I should not be pushing a manual chair at all according to my evaluation --I'm risking serious injury. But I don't have much of a choice.

I'm also trying to get my student loans forgiven due to permanent disability. I am not going to recover. Doctors can only treat the symptoms and try to stop further progression in the limited ways they can --but that's it. This is permanent. I'm 29 and it's a struggle just to work my part-time job 8-10 hours a week (working 2 afternoons a week) where I sit at a desk and grade worksheets.

I know God has a reason --but I am really struggling with coming to terms with and accepting this story He has given me to live out. I know I'm in a unique position to encourage and come alongside other people with serious chronic illness. I'm just still going through the process of grieving and processing it all.

[Sheenar]

Had my ankle surgery this morning. Am staying the night in the hospital for observation and pain control.

Going okay so far. Starting to have more pain as the nerve block is wearing off. Nurse should be here soon with pain medication.

Currently in a splint from the knee down. Will be non weight bearing for a while.

Staff and nurses here are wonderful.

Should be discharged to go home tomorrow if all goes according to plan.

[ClaecElric4God]

I'm sorry it's taken me so long to respond, Sheena. I'm praying for you, and I'm sorry you have to struggle so much. God has a plan, but I know that doesn't make it easy to accept it. I'll be praying for your peace and comfort, and that the Lord will guide you and draw you closer to Him through this.
Don't forget that you are loved.

[Sheenar]

Quick update --I only stayed one night in the hospital --came home on Thursday the 18th. Picked up my dog from the boarding place that afternoon.

Things are going okay. Still having a good bit of pain here and there --but it's getting less with time.

I had my first follow-up with my surgeon on the 19th and a second follow-up on the 25th (so yesterday) --he took x-rays yesterday and everything looks good (it was interesting to see the staples on x-ray) --I have now graduated to the walking boot and can start putting weight on my foot as tolerated (sooner than I expected). I go back to the surgeon in 2 weeks for another follow-up and to get the staples taken out.

In a few weeks, I will likely start physical therapy. I am hoping to be able to go to the local rehab center (the major rehab hospital in downtown Houston opened a branch up where I live) and do aquatherapy.

[anlptgtsg]

Oh nice to hear that things seems to be doing great. Praying the that healing is way better than what it seems.
I'm actually imagining what the staples looks like in your x ray.

[Sheenar]

The staples looked pretty weird --like they were just floating in space on the top of my foot. It was surreal.

I'm having some swelling and pain. It ebbs and flares. I'm still able to sleep fairly normally, thankfully --just have been more tired than usual, so have been sleeping more.

Thankfully, my illness hasn't flared much (so far) during this recovery --for that I am very grateful. Have been extra tired and feel weak, but that's about it. No seizures. Only one migraine. Some minor dysautonomia stuff, but nothing major. So, so grateful that my body seems to be giving me a break while I recover.

[Sheenar]

I got my staples out on Thursday of last week. Only have to wear the walking boot when walking for a few more days --then I get to transition to a regular shoe.

AND, I *finally* got my power chair on Monday! It's a nice chair --it tilts and the foot plates elevate as well. It will be a HUGE help with the dysautonomia stuff and helping to conserve energy. As well as helping me not injure myself trying to push a manual. Yay for not having to push the awful manual chair that hurts anymore! \^.^/

I'm hanging in there. Have had a rough patch with depression. I've found grief to be very non-linear and acceptance and grief seem to come in waves --so I got smacked pretty hard with grief this weekend over what I've lost due to illness. I'm grateful for what I have and what I can still do, yes, but that doesn't make the losses hurt any less --they are still heart-wrenching. I guess I'm still working through things and coming to terms. I miss serving in the ways I used to. I miss mission trips. I miss being able to drive. I miss the way my brain used to work --cognitive issues are frustrating. I sometimes feel like a failure as an adult --needing help doing everyday things and no longer being able to work full-time and support myself. I know I *am* not a failure -- it's just hard to be 29 (and turning 30 in 2 months) and have things be so drastically different than you had hoped and dreamed and planned. Accepting God's plan for my life over my own is definitely a process --sometimes I have peace about it and sometimes the grief just hits and it hurts and I get angry.

Sorry to unload here --I just don't currently have someone really to talk about this with. And am afraid to vent with my friends from church. I guess I fear rejection as I've lost some friends due to my illness. When I'm around friends I want to just be a regular 29 year old for a while and talk about other things. And my best friend lives 4 hours away now (she moved about 8 months ago) and that's been really hard.

But in good news, I can walk a few feet now.

[MIBuddy]

Hey Sheenar,

Praying for you! I grew up with a sick father who just passed away; different situation, but I know how much it sucks. I know people tend to grieve differently, I get hit in waves too.

I'm glad you're doing better! And I'm praying for courage with the right people, or for people who are trustworthy to come along who you can talk to more!- I've been needing to vent more, and I know how hard it is when you're looking for the right people or feel scared to say stuff.

(I hope that doesn't sound like I'm trying to take focus away from you, just trying to relate and hopefully encourage you that you're not alone in these sorts of struggles)

I wish you the best!

[Sheenar]

Thanks, MI. I really appreciate it.

I'm still hanging in there. Had a 3+ hour eye doctor visit today (long afternoon was long), but we think we've found a new tinting for my new prescription glasses which, along with polarized clip-ons, should significantly help my light sensitivity (I currently have a rose tint on my glasses --it helped a LOT when I first got it, but it's been 4-5 years and my migraines and light sensitivity have gotten bad again --so we're thinking changing to a blue-grey tint will help).

I stood on my feet and put food in the oven on Tuesday! I was able to walk around for about 5 minutes or so!

I am hoping and praying I can go back to my part-time job soon. I need the routine and structure --and need to get out of the apartment for a non-medical reason. Plus, the income. My supervisor wants us all to be there for the month of August, so I'm running out of time. I'm not yet able to walk far enough yet to return to work (need to be able to walk down the hall, down the elevator, out the front doors to my coworker's car and then walk from car to my place of work and to the back of the room to my desk --work is not wheelchair accessible and my coworker doesn't have a car that can transport it, so I have to be able to use my walker). I'm having to be careful with walking and build up slowly as it hurts a lot if I'm on my foot too long right now.

I have a new aide who started on Tuesday (am with a new home health agency now --did the paperwork for that on Tuesday as well). Please pray that this person will be dependable and that this agency will work out. It's hard when people don't show up to work. But this new girl seems really nice and she kept her phone put away the whole time she was here and was super respectful and helpful --so I am hopeful.

[Sheenar]

Update:

Since starting with the new agency, I have been through 3 aides. The 3rd has now been with me for a little over a week. I'm praying this one sticks around. She plays and talks on her phone a lot while on the clock, but I just want someone to stick around.

I see my foot surgeon tomorrow --I started having sharp pains when walking a few weeks ago --and the more I walk, the more it hurts. So I'm going in for another x-ray to check and see if there's been another failure. I'm praying that is not the case. 2 surgeries in 9 months was really rough and I missed a lot of work.

I'm due to return to work this Thursday, the 10th. Prayers that the transition back will go smoothly and that there won't be any problems with having my service dog at work would be appreciated. My supervisor is still unsure about having Zeus there, but is willing to give it a try.

Depression is a good chunk better. I'm not sure if it's the end of the depressive episode or if it's the new migraine med my neurologist started me on (which is also an antidepressant), but I'm so grateful for the lifting of the black cloud.

[Sheenar]

Well, the good news is I haven't had another surgery failure happen.

The bad news is that there's really nothing to do for the pain other than wear braces on my ankles and do PT. Surgeon says that, due to my connective tissue disorder, I have the ankles of someone in their 60s.

So good that I don't need another surgery (not now, at least). But boo for pain and not having much of anything that can be done for it.

Annual physical tomorrow with my PCP --just routine stuff, so no big deal.

I am having some issues with autonomic stuff --heart racing, feeling dizzy off an on. I think it's the heat. Had to tilt back in my wheelchair today while out --suddenly got really dizzy and my pulse shot up. Trying to be careful. I see my cardiologist again in December (this is my main dysautonomia specialist). Have to start a log for my blood pressure and pulse readings in a month or so so I have something to show him so he can better judge how my current medications are doing as far as helping control the symptoms.

Overall, though, things are fairly stable and going okay currently. Which I am so grateful for.

[ClaecElric4God]

I'm glad things are stable right now, Sheena, but praying that things get better. Hang in there.

[Sheenar]

Thanks, Claec!

PT today and it's going to be obvious that I haven't done my home exercises all week. Bad Sheena.

[Sheenar]

Update:
I currently have a fairly bad bacterial infection (but not bad enough for the hospital). They put me on a pretty darn strong antibiotic and it has not been pleasant so far. But hopefully this will kill the infection and I won't require further treatment.

Please pray. I feel pretty gnarly. And antibiotics tend to knock me fairly flat for a while.

(And now I have something to bring up to my dysautonomia doc when I see him in December --infections are a fairly common side effect of being on a steroid long-term like I am --my labs so far are coming out okay and it's been nice not passing out (the steroid has given me a greatly improved quality of life), but this is definitely a concern. I need to make sure my immune system is still functioning like it should.)

[Mullet Death]

Praying Sheena! We love you

[Sheenar]

Thank you, Mullet! Miss talking with you. (Thank you SO much for the birthday present, by the way! It rocks! Though I die a lot in the game. XP)


My appetite has been pretty far off for days. Have hardly eaten anything in days. The thought of food makes me feel ugh. Yesterday all I ate was a couple of spoonfuls of Sunbutter and a small amount of potato chips. Haven't been drinking much, either. Will try scrambled eggs this morning and see how I tolerate that. I still feel pretty awful --and it's day 3 out of 7 of antibiotics.

[anlptgtsg]

You need to eat more. You need more nutrients. Praying as well

[Sheenar]

Thankfully my appetite has started to come back. But on those days I didn't eat much, I couldn't eat. I felt sick trying to eat. That is why I didn't eat much. To just say "You need to eat more" isn't very helpful. I wasn't eating because I could NOT. I would have given anything to be able to eat.

[Sheenar]

Felt better and went back to work last week.

Then yesterday morning, woke up with sore throat and runny nose. Then the chills and aches started. Then a high fever (101).

Fever broke overnight, but has come back.

I feel AWFUL. I want to curl up and cry, but crying makes my nose run more.

Fevers are bad news for me. Please pray that the fevers go away and don't come back. This is how my last progression happened and it is scary. I don't want that to happen again.

Drinking and trying to eat. My appetite is gone. I ate some toast this morning with Sunbutter. Will try a sandwich for lunch. I feel sick when I try to eat very much.

[Sheenar]

Whatever that virus was has gone, but my bacterial infection has come back with a vengeance.

Had to go to the ER last night. Now on another round of antibiotic (the same one as a few weeks ago, so not terribly hopeful that it will kill the infection since it didn't work last time --obviously --because my infection came back so soon after finishing the last round).

Something weird is going on with my body. It's pretty unusual for me to get sick and get infections back to back like this.

I see my main dysautonomia doc in December. Will ask him about this. I'm concerned that the steroid I'm on long-term may be causing weird things with my immune system.

Please pray that this infection goes away and doesn't return. It is pretty painful and feels miserable.

[Sheenar]

The good news is my infection went away --and it's been a few weeks, so I think it is actually gone this time. That's a relief!

I had a CT scan last week of my inner ears cause I've been having some long-standing issues and have been set up to see the "ear super specialist" (wonder if he'll come into the room wearing underwear on the outside of his pants and a cape) the first week in December.

Also have another medical diagnostic procedure coming up that I'm not looking forward to as when I had it before, it was uncomfortable and embarrassing and just ugh.

I'm hanging in there. Been doing fairly decent for the most part. Having (more) issues with home health aides not showing up to work and a rotation of people in and out of my home, but that should hopefully be sorted out soon.

See my dysautonomia specialists the 2nd week of December. The CareZone app is really helping me track my blood pressure/pulse, pain, mood, etc. As for bp, the medication regime I've been on has really been helping. My numbers have been pretty good --not pretty low like they were for a long time --the steroid has some side effects, but not passing out is nice! I'm still having some pre-syncope symptoms, but they aren't as severe as they were before and are much more manageable. I'm so grateful!

[Okami]

I know I don't speak much in your thread Sheena, but know I am often praying for you!

[Sheenar]

Thank you, Okami! That really means a lot.

Had my appointment with the ear super specialist today and I will be having a surgical procedure on Feb. 1st to remove the vent tubes from my ears and plug the holes in my ear drums (vent tubes are placed in the ear drum to ventilate the inner ear in people with eustachian tube disorders) --but mine have been in for 4 1/2 years and the doc said they were waayyy past due to be removed. So we'll do that and let my ears heal up and see how things go. Hopefully I'll be able to wear my hearing aids again! And have less ear infections. I may have to have another procedure to put new tubes in, but we'll deal with that if/when it comes up.

Have 2 appointments downtown next week (cardiologist and neurologist --the 2 doctors that make up my dysautonomia team) and an uncomfortable diagnostic procedure the week after.

After that, I shouldn't have any appointments other than counseling for a while (I finish my allergy shots this month) --not until I have to go consult with the anesthesia people downtown within 2 weeks of surgery cause they are insisting that I do so to make sure surgery and anesthesia will be okay (though this wasn't done with my last 2 surgeries --the last 2, they just had my dysautonomia doc sign off that I was okay to have surgery). But I'm grateful they are being thorough --it shows they care!


Other than that, I'm looking forward to going to Austin the week after Christmas to visit my best friend. Will be taking a Greyhound again --will definitely insist they put the scooter under the bus (it comes apart easily) and not put me on the bus sitting on it so that there is no repeat of the scooter flipping over while turning incidents. XP