CAA: Christian Anime Alliance

Me and my family are praying!

So, I got a phone call yesterday afternoon. The Neuro Clinic has scheduled me for a surgery consultation on Wed. (tomorrow) with a general surgeon for my muscle and nerve biopsy.

Eek. After waiting so long, it feels weird to have things moving so quickly. Thankfully, I was able to get medical transport lined up to take me to the south side of Houston for this.

I'll be preparing my list of questions for the appointment.

Glad to hear you have some way to get there are do this! Good luck!

My appointment has been rescheduled for Wed. of next week. After waiting for medical transportation for a good while, I called and they were still trying to find a vendor to give me a ride.

So, the surgeon's office moved me to next week for the consultation. And I called medical transport and they DO have a vendor in place this time to give me a ride there.

My muscle biopsy is this coming Monday morning. It will be in the hospital OR under general anesthesia. Please pray for a successful/complication-free procedure and for the processing/lab testing of the sample to go smoothly.

Also, I had a ride to the hospital, but he just texted me saying that he wouldn't be able to drive me home from the hospital. So I am trying to find someone to drive me 5 days before my surgery. Stressful...

Praying!

Still trying to find a ride. My friend said he would take me if it came down to the last minute and I didn't have anyone, but is afraid he'll be late for work if he takes me (so wants me to find someone else if possible).

Frustrating.

Next week is going to be nuts. Muscle biopsy on Monday and then I'll be starting a 4-day in-home EEG (where they glue all those electrodes to your head) on Thursday.

Anyway, not feeling great today, but am going to try to make it to the Good Friday service at church this afternoon.

Didn't find a ride with a friend/church member, but medical transportation wound up setting me up with a cab-type service to take me there and back in the morning.

I am just not sure they'll do the procedure since I don't have anyone to stay with me at home after (for that first 24 hours). They didn't tell me I needed someone (I still tried to find someone, but no luck), but requiring that is usually the norm for procedures under general anesthetic.

Also, I found out that the anesthetic they will be using brings a higher risk of complications for people with/suspected of having mitochondrial diseases. I'm going to talk to them in the morning and see if they could possibly change to another.

I am feeling anxious, as I usually am feeling before a procedure. Please pray that everything goes smoothly. A lot is riding on this.

I do have a friend that lives in Houston who is meeting me at the hospital to be with me before and after the procedure (until transport comes to take me home) so I don't have to face it alone. For that I am very grateful.

Know that I've been continuously praying for you, dear friend. <3

Made it home. Muscle biopsy went okay. They kept me for hours in the post-op area because my BP dropped really low (I was unconscious--waking up and going back-- for most of that time --was shocked that the nurse said it was 4:30 when I woke up finally all the way)--but lots of saline fixed that issue.

My friend even cancelled her appointments this afternoon (she is a dog trainer) to stay with me at the hospital until my transportation arrived to take me home.

I am hurting a good bit (both my biopsied leg and also my throat from the intubation), but able to bear some weight on the biopsied leg. Should be a lot better by Wednesday.

My muscle sample was taken to the lab of this doctor who is "the" person to process these things. So now I wait for the long (6+ months) wait for results.

Thanks, y'all for praying for and thinking of me! I really do appreciate it!

Now I have a couple of days to rest and recoup before I have to go to my neuro to be fitted for my 4 day in-home EEG.

Having some issues with pain control today. Hurting pretty badly. Ace wrap is wonderful for holding an ice pack on your leg.

Please pray that I will have restful sleep tonight. I am hoping to feel okay enough tomorrow to go to an appointment and then college group tomorrow night. Have two very important appointments on Thursday.

Leon has been taking good care of me and Marzipan is being her usual "kitty nurse" self when I'm recovering from something.

Will be praying I hope you feel better.

Sheenar (post: 1547570) wrote:Ace wrap is wonderful for holding an ice pack on your leg.

That is brilliant. *mental note* Praying for your pain reduction, hon.

Praying that God will help you feel better soon.

Always praying!

Stayed home and rested yesterday instead of going anywhere. I am glad I did. I am hurting much less today. Still trying to not do too much, but I think I can make my appointments today.

Oh, that's a blessing. I will pray for you Sheenar.

I'm still praying for you too. I'm glad your pain has become in least a little more manageable then.

Oh snap. I just talked to my rheumatologist's office. They said they have my biopsy results (already? I thought it took a lot longer than one month--most other patients I have talked to said their results took 8-12 weeks at least to come in.) I have an appointment tomorrow morning.

My aunt is coming with me, thankfully. I will keep y'all updated.

I'm glad to hear that they got it through so quickly (slow day at the office?), hoping that you find something out!

Praying for good results. God bless.

Praying!

Rheumy said that they only did a mitochondrial stain (no mtDNA testing) and it looked normal. Said that it doesn't completely rule out the possibility of mitochondrial disease--just that the biopsy was normal with what they did.
Rheumy told me that I have fibromyalgia (which I don't buy for several reasons I won't go into here). And wanted to put me on Lyrica. But I told him I wanted to do more research first. Then he said he can't really do anything else for me since I don't have an autoimmune disorder. And to follow up with the Neuro dept.
Went up to the Neuro dept. to go talk to the nurse since she hadn't called me back. She said they hadn't received the biopsy report yet to give me a copy. Said they didn't do the mtDNA testing because they "don't do that" and I'd need to ask the neuro I see there to order that testing. Next available appointment with her is mid-July. She isn't in the office this week, so I couldn't talk with her. By July, I don't think my sample will be viable for that kind of testing. That's what I asked them to do when they scheduled the biopsy!
I was put on a list for cancellations.

I don't know where to go from here. Still no answers. I am not a happy camper. That biopsy was rough on my body and I really don't want to have to repeat it because testing wasn't done that should have been.

So now I am still where I was in regard to knowing what is going on with my body. So frustrating.

About to start a new dietary program recommended due to my multiple food sensitivities. It's supposed to help a lot with my symptoms. It will take about 3-4 weeks to see results. I'm trying to be hopeful.

Thanks, y'all for praying!

So...I have been dropped by my downtown neurologist and my local neurologist both. I now have no neurologist.

Downtown neuro wants me to go see the mito specialist downtown --but her office doesn't want to accept me as a patient because my stain was normal. Said to submit the findings from my cardiologist and my local neuro (sharp transients on the EEG) and they'll review and "consider".

Something neurological is going on. I was told by my local neuro to drive only here locally. Fatigue definitely aggravates whatever is going on with my brain.

Not sure where to go from here. I went to my primary care MD and she is getting pretty frustrated because she writes these referrals and then several doctors have dropped me because they reach the end of what they can do.

The only treatment for mito is the supplement cocktail and diet currently (which I am doing --and have had substantial improvement on the cocktail--still have to be careful not to overdo things, but am not flat-out on the couch so much of the time now). My PCP asked why I am still pursuing the diagnosis.

I just want to be able to show that this isn't all in my head --that what is happening is real.

I'm also a bit scared because of the neuro stuff going on. I am looking at/working toward moving closer to Houston itself so that I have access to the Metro buses/MetroLift so that I can get rid of the car. I can drive for now, but I suspect that the time is coming where it will no longer be safe for me to do so. (Plus the car is a HUGE expense that is really killing me right now--I'm considering sending the car back before moving because of the money situation). I also REALLY, REALLY want to get back into dog events/training --haven't been able to due to finances --but getting rid of the car would free up some money so I can do dog stuff again. I want to finish Leon's Rally Novice title and do some Obedience.

I won't wind up moving for a while due to waiting lists and all that --but I'm wanting to get the process rolling. Also, have put off starting that process because of a guy friend here that I have feelings for (who has been an awesome, supporting person for the past 2 years). But things are getting to where I'm going to have to make tough choices to do what is best for myself.

So, tl:dr --please pray for me --that God would provide the right care for me to treat the symptoms of my disease and keep me functioning for as long as possible.

Also please pray that I would be able to find somewhere safe/clean to live in the Houston area. So many of the low-income housing places are in really ghetto/bad areas of town (as in people getting shot down in the street). So I'm doing my research and searching for housing in better parts of town with less crime/gang activity.

Praying. I definitely know what you're talking about with the low-income housing situation down there, since my aunt and uncle got out of it when I was little. Be safe, and good luck!

Praying. I can only imagine what you are going through.

praying for ya, Sheenar!

Sorry I have been away for so long, y'all! No Internet access at home --been using a friend's wi-fi or local wi-fi spots in town, so I've only been around sporadically.

Anyway, I received an official rejection phone call from the mito specialist downtown. She still does not want to accept me as a patient --even with all the records as evidence. She wants me to go instead to a geneticist at another hospital. He's out-of-network, so we're working through the procedure for making a case for my insurance to cover consultation/tests/treatment since I am very quickly running out of options here in Houston. Please pray that I get approved to see this dr. My only other option is to go out of state if this does not go through (very few drs. that deal with/specialize in mitochondrial/metabolic/genetic disorders).

I was sick with an upper respiratory thing a month and a half ago. Then got sick again with a bad viral thing 3 weeks ago --ran fever off and on for 3 days. I'm feeling much better, thankfully. But my neurological issues seem to have been aggravated by being sick. I'm meeting with my primary care dr. on Tuesday to get her input/suggestions. I really do need a neurologist --especially since I've started having migraines again after over a year --and have been having more trouble with speech and balance. Fluorescent lights have been much more awful than normal (even with sunglasses), making grocery shopping, doctors' appointments, and general errands/social activities pretty difficult. Please pray for this as well.

Also, I have a meeting with my DARS (Vocational Rehab) counselor this week. We are trying to find a work-at-home job for me as that is the best option for me right now due to stuff going on medically. I really want to work. My self-esteem has been suffering due to being out of work for so long. I want to feel like I am contributing to society somehow. I do volunteer (am the president of a local community service organization), but not nearly as much as I used to --and that makes me sad. I'm on the list of people for my church to call if they need volunteers, so hopefully something will come through soon so I get out of the apartment more. A job would be preferable because I really need some supplemental income to help make ends meet. I've been doing okay --and God has been meeting my needs --things are just really tight.

One thing that has been really encouraging to me is reading the devotionals at Rest Ministries (an online ministry to people living with chronic illness). Really has been helping to keep things in perspective and maintain a positive outlook/count my blessings. I plan to approach my church and ask if we could start a HopeKeepers group --as I know several people who could really benefit from a support/prayer/Bible study group for people with chronic illness. It's something that is really needed. Please pray for this --that, if it is God's will for such a group to be started here, that everything will fall into place.

Update:

My DARS counselor and I, after talking things over, decided to put a hold on job placement until after the holidays are over since I have had a not-small setback from a virus I had a few weeks ago. Am pretty run down. She wants me to focus on enjoying time with family, working on my projects (like my knitting), resting, spending time with friends, etc. She said she feels I need time to recover from being sick with the virus and that this is not the right time for the stress of job hunting.

There's been some problems with referrals my PCP sent out before Thanksgiving. My case manager is working to get everything sorted out. Still is stressful.

I'm scared because of some new symptoms I am having as well as some worsening of already existing ones. When I catch something like that virus (I ran fever off and on for 3 days --the whole works), there is always a real risk of permanent damage and progression of my disease (a cerebral spinal fluid leak after a spinal tap in 2009 triggered a huge progression that completely changed my ability to do ADLs--activities of daily living-- as I did before).

So I am afraid. I don't know what's happening to me. I want to work. I want to be able to participate in my community. I want to go back to school as planned. I want to continue advocacy work. I want to be able to do things with friends and maintain friendships. I want to continue being active in my church.

I know that's a lot of "I wants" --and our wants are not always a part of God's plan. This is still a scary time for me as I wait to see if my setback (worsening of symptoms) turns out to be permanent or not --and adjust to things all over again to get back to living life.

Prayer would be appreciated very much, friends.

One good thing is that I have been able to get an appointment with a podiatrist for this Thursday to have him look at my foot that's been very painful. I've been extra gimpy for several weeks. I also need new orthotics.

Praying!