CAA: Christian Anime Alliance

So, I was in the hospital from Thursday evening through Saturday afternoon. My stroke-like episodes are getting worse and increasing in frequency (I'm having them multiple times a day, every day). MRI/CT scan and blood work came back normal --and now I have more doctors that feel that these episodes are from mitochondrial disease. The neurologist prescribed a medicine for the peristalsis (numbness) that comes with each episode and also prescribed several supplements for me to take (the "cocktail" that is helpful to many with mitochondrial disease).

Medicaid won't pay for the supplements. If I do have mitochondrial disease, the supplements are currently the only treatment available (that I know of). Medicaid will pay for a couple of them, but not for the most expensive ones. I don't know how I'm going to pay to get them and take them at the levels prescribed. So that is one prayer request.


Another is: I have a tilt-table test this morning --you lie on a table and they strap you in and tilt you at different angles to see if you will pass out (testing for a drop in blood pressure). And I had a very disturbing dream before I woke up this morning that has me really anxious about going to the hospital for the test.

Thank you to all who have been so supportive through all of this. Your patience and love has been and is greatly appreciated. Am still trying to hold on to the hope that God has a bigger plan and purpose in all this --and His plans for my lief are for good, even if they involve upsetting all of mine.

Praying!

I'll be praying as well. You have to go through so much, you really are a strong person to be able to deal with this all in the way you. I really don't think I could go on having such hope and faith like you do if I where in your situation. I wish you the best of luck with you test too.

Praying for you!

Have you tried Needy Meds? They may be able to pick up what your insurance won't pay. http://www.needymeds.org/

Also - some hospitals have their own quota/list of "hardship cases" they need to fill. It may be possible to get the remaining meds for free from the hospital. My dad has been doing that with his diabetes meds for awhile now without a problem.

Prayed for ya!

Thank you all so much! <3

Results from tilt table test: I have been diagnosed neurocardiogenic syncope. I didn't pass out, but my blood pressure did drop sharply during the test to where I *should* have passed out (when they gave me the nitroglycerin pill --which sped up my heart rate while they had me up at 70 degrees). So, I have medicine now to regulate my heart rate, stockings to help the blood move up out of my legs and instructions not to stand a lot or get too hot and to drink 3 liters of fluids a day.

My cardiologist said, "We caught a fish today." (Meaning we caught the cause of my dizzy spells).


USSRGirl, thanks for the link. I looked at the site and it seems to be for generic/prescription drugs (and not for nutritional supplements). But I will do some more digging on there later and see if I can dig something up.

Eeep - that's what I get for not reading closely enough. I'm pretty sure both the options I listed are just for prescription meds/related items. It sucks how hard they make it to get things like supplements. :\ I hope things work out though and I'm glad they narrowed it down to something at least! Hang in there. Praying that all goes well and the treatment works.

I"m glad to hear there was a diagnosis! Still praying for you.

Rally overwhelmed and frustrated. Seems to be one thing after another with not much time in between.

Went to the ER on Monday night with really bad abdominal pain.They gave me some medicine, but it didn't help.

Going to see my primary care dr. later this afternoon. I hope this will all be over soon.

My PCP was working on a referral to the mitochondrial disease dr. in Houston last time I saw her a couple of weeks ago. Hope that the mito dr. doesn't blow me off again like she did a year ago --my symptoms are worsening and everything points to it being mito disease. Hope she actually orders concrete testing (because blood tests aren't accurate for the most part).

I really want to know what this is that I am facing.


Trying to hang onto hope.

Edit: Was given some new medicine today. Hope it works.

My stomach issue thankfully is now back to its normal status.

I saw the Neurology specialist downtown again and they have decided to go ahead with a muscle biopsy (as well as nerve biopsy) to test for mitochondrial disease. It hasn't been scheduled yet, but will be sometime in January.

I am really anxious about this. I will be awake through the whole thing (just local anesthetic), though probably will need sedation because of having a surgical procedure while awake and seeing stuff will set off anxiety bad.

I am hoping this will lead to some answers as well as better treatment to improve my quality of life. But at the same time, I'm hoping it isn't mito (though that's what I've had 6 different MDs say they feel is going on) because the prognosis isn't great with that set of diseases.

Trying to focus on taking one day at a time instead of thinking of what is coming down the road. I am still alive today, what can I do today to serve God and others? If it's a day where I need to rest, then rest. If it's a good day that I can go out and do something, then go do something to the best of the ability I have.

I'm trying to get back into volunteering now that I'm not in school for the time being (though exploring a different Masters program). I miss it and it will help get my mind off of myself and my problems. Still looking for a part-time job, but volunteering will get me out of the house and give me something productive to do.

One last request (health-related, but not mine) --an employee at a Petsmart fed Leon treats earlier this week without asking for and receiving my permission (I was occupied with the ID tag kiosk) --and well, Leon is on a very strict diet because of his allergies. Sure enough, he broke out in a rash and was itchy and miserable. The Petsmart vet saw him (store manager had made arrangements) and he is on medicine to help --but the medicine has him feeling pretty yucky and he's just been laying around and sleeping most of the time, so he's out of commission and not able to work. He is on a tapering dose, so hopefully he will feel better once on the lower doses in a day or two.
But I'm stuck at home pretty much (can only go on very short outings--less than an hour or so) so I can take him out and take care of him. Please pray for Leon James.

Praying for you both!

Well, I talked to the Neurology Clinic yesterday and they said they are looking at doing my muscle/nerve biopsy next week on Friday (so a week from tomorrow). They will call and confirm for sure and give exact details (though their history of actually calling when they say they will isn't the greates:shady:).

I am very anxious about this procedure. They are afraid to put a suspected mito patient under general anesthesia (because of the risk potential), so I'll only have local and sedation. One friend who had the procedure said she wasn't aware of a thing and doesn't remember it --another said when they cut the muscle that it hurt very badly. I am anxious because of a previous bad experience at this office with a very painful test (nerve conduction study) and a tech who belittled me for crying from the pain.

But this is the last-ditch effort to figure out what is going on. And the dr. who is doing it is spoken of highly in the mito community and takes plenty of samples for testing, so the necessity of a repeat biopsy isn't likely. So the procedure must be done. I just hate the thought of being awake and aware during it. Hoping they'll give me something similar to what I had when I had my wisdom teeth taken out --was awake the whole time, but very loopy and don't remember any of that procedure.

Another related request: I am going to be starting the supplement cocktail for mito disease within the next couple of weeks. I have a script for it from the Neuro who saw me in the hospital. This stuff costs $100 for a 2 month supply (at the doseage I will be taking). I still haven't found a job. So I'm not sure how I'll be able to afford it long-term --it's necessary that I take it to help slow down the progression of the disease/improve my quality of life. Trying to figure things out financially. Please pray that a way will be made somehow for me to be able to get and keep taking the cocktail.

I'm praying for you, that God will provide for your needs, that He will protect you from unnecessary pain during the procedure, and that He will help the doctors in figuring out what the problem is.

My muscle and nerve biopsy is tomorrow morning. I'm having a lot of anxiety about it.

Please pray.

Praying! And I hope these bible verses can bring you some comfort.

Anxiety.

Hope.

Comfort.

I'm definitley praying for you Sheenar. Good luck!

Praying!

So, my biopsy didn't happen today. Long story short, though the nurse had said originally that I could be given sedation (like what they give people for wisdom teeth surgery --awake, but out of it), I showed up today and got back to the room and was told by the dr. that they don't do sedation there, period. My procedure was canceled because she felt I couldn't handle it with just the local anesthesia.

So, they're trying to find someone to do the biopsy (muscle and nerve) in the OR under general ASAP so I can have at least preliminary results by the time of my follow-up appt. in March.

Such a frustrating experience. I went through SO much just to get downtown today (to find someone to take me).

Praying!

Yes, a muscle biopsy is too much to do under local -- you have to get a pretty good-sized piece and you can't numb up the area well enough.

Unfortunately, that's this dr.'s way of doing things and she won't do it any other way. Still waiting to hear back from them about doing the biopsy in the OR (they're still trying to find somebody to do it, probably).

I saw a new neuro today (I saw my cardiologist on Thursday and he was concerned about some symptoms I am having, so he referred me there). She wants to do a dizziness test next week and an EEG the following week to check for any possible seizure activity (just to rule that out, I guess). I'll go back on the 29th to discuss findings.

In the meantime, she highly recommended that I do not drive. She said she didn't feel comfortable with me driving until these tests are done and we rule some things out.

So, yeah, no idea how I'm going to get to church. There is a Demand & Response transit thing in my area --once you're approved, you call a day or two in advance and, if there's availability, they will come take you where you need to go for $3 each way. So that is what I'll probably do for appointments/meetings/etc. until I am cleared to drive again (taxis around here are pretty expensive, from what I've seen so far). Transit doesn't run on weekends, so I am trying to find a way to get to church (started going to a church here instead of the one in the town I moved from--though I am still transitioning).

Praying for you, Sheenar.

Praying sis.

My cardiologist's office called yesterday morning and he is also telling me not to drive --so I am doubly grounded.

A friend of mine did come pick me up last night and we went to an ASL social in my college town --and it was so fun! I have been trying SO hard to find/get plugged in with the local Deaf community, but none of the churches where I live have a Deaf ministry or interpreted services. So it was nice to get out and socialize/practice my signing (really needs work, to be honest, but better than it used to be!)

I feel bad, though --when I got home, one of my neighbors asked me to drive her to a dr. appt. downtown --I hated having to tell her I couldn't help. But I did tell her I would help her figure out a way to get there --to at least get to the Park and Ride and take the bus down. Hopefully she'll take me up on that offer.

It stinks not to be able to come and go as I please. A friend of mine is getting married in a few weeks about an hour and a half's drive away. I really don't want to miss it.

I'm sure your friend would be happy to figure out a way to get you there and back- try asking!

Anycase, still praying for you!

Got a letter today from my Medicaid HMO with some not good news.

A certain local hospital network is no longer going to be in-network with them beginning on March 31. This hospital network is who most of my specialists (all but 3 of them) are through, including the ones specifically testing for/helping with mitochondrial disease.

It is very important that I continue to see the same doctors for continuity and quality of care.

Please pray. I'm going to talk to my HMO tomorrow and see what my options are.

Just got home from my local neuro appointment an hour ago.

They saw some sharp spikes in brain activity (both while awake and asleep) during the 20 minute EEG I had 2 weeks ago. Not sure if it is seizure activity or what. So they are scheduling me for a 3 day EEG in my apartment --full 18 lead EEG, just in my home for 3 days (will also be hooked up to a laptop with a camera). Will be sometime in the next week or so.

Not exactly the news I was hoping for. Trying to rust God with the outcome.

On Saturday, I had an episode that I'm pretty sure was seizure-like in nature. It scared me a good bit. Am keeping a log of such things if/when they happen to talk to my neuro about.

My 3-day in-home EEG *should* be sometime this week. Waiting to hear.

It's been really difficult off and on to get to doctor's appointments, the store, pharmacy, etc. It is frustrating living somewhere without reliable public transit (not even a fixed bus route) and not being allowed to drive.

I'm tempted to drive myself when there are no openings with the Demand & Response service, but am afraid of having another episode while I am driving --so that wouldn't be a good/smart decision. I have been mostly staying at home, though friends have come to pick me up a few times in the past week to go do something together/go to church --so that is helping to keep my spirits up.

I am worried about a lot of things --a lot hinges on this EEG and the results. Please pray for peace of mind for me and trust that God will provide.

I'm glad your friends have been able to pitch in a bit. Still praying for you!

I'm still praying for you Sheenar. Your faith and bravery still really astound me. Keep it up, you're doing great!