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PostPosted: Sat Aug 18, 2012 10:38 am
by Atria35
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!

PostPosted: Sun Aug 19, 2012 8:44 am
by anlptgtsg
Praying. I can only imagine what you are going through.

PostPosted: Sun Aug 19, 2012 10:11 am
by ABlipinTime
praying for ya, Sheenar!

PostPosted: Mon Aug 20, 2012 1:56 pm
by Nadia
Will definitely pray.

PostPosted: Sat Nov 17, 2012 8:11 pm
by 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.

PostPosted: Tue Nov 27, 2012 5:25 pm
by Sheenar
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.

PostPosted: Tue Nov 27, 2012 7:07 pm
by MrKrillz0r
Praying!

PostPosted: Fri Nov 30, 2012 10:37 pm
by anlptgtsg
Praying

Re: Health-related prayer requests

PostPosted: Mon Dec 10, 2012 9:52 pm
by Sheenar
I'm feeling better! I actually feel somewhat like myself again! :)

New vitamins that my body actually absorb plus following my regimen of supplements and diet have helped a lot. Thank you for the prayers!

Some snags with insurance/referrals/ adaptive equipment, but they're being worked out. :)

I am really excited about some things going on right now. Some really cool stuff is going to happen --I know it! :D

Re: Health-related prayer requests

PostPosted: Tue Dec 11, 2012 11:04 am
by DaughterOfZion
Yeah! Congratulations. :3

Re: Health-related prayer requests

PostPosted: Tue Dec 11, 2012 4:54 pm
by Atria35
That's fabulous to hear!

Re: Health-related prayer requests

PostPosted: Wed Jan 30, 2013 5:18 pm
by Sheenar
Decided to post here to try to keep health stuff contained to one thread.

After much persistence, I finally got to talk with someone at my HMO about seeing the genetic/metabolic disease specialist downtown. I thought (and was told before) that this doctor is out-of-network --so I've been going through the process of getting my doctor to write a letter, get a referral, get documentation, etc.
The lady I spoke with today from my HMO told me that this specialist also sees patients at an in-network hospital/clinic. So I could see him in-network with only a referral! There's still a few details to iron out, but I pray that this works out for me! My whole life has been doctors not knowing what is causing what is going on with my body. 3 years ago, my life changed when I had a huge progression and had to totally re-learn and re-adapt ways to do everyday things. 3 years ago, I was told that it is highly likely I have mitochondrial disease. I have been through many tests (a few quite painful), some not-nice experiences, and been passed around like a hot potato from one specialist to another.

Prayerfully, this specialist will be able to pin down what the cause is of my health issues. He is held in high respect in the local mito community --one of the best in the country.

Please pray that this will come through for me. Even though I am already accepted as a patient by this particular hospital (I have an appointment with Neurology in March), there is some issue with me living in a different county. Pray that this leads to answers and better tailored treatment for my disease.

Other good news: being persistent pays off! After almost 2 months of round-and-round, I finally got Health and Human Services to count my medical expenses for my SNAP benefits! Yay! Praise God that went through finally!

Re: Health-related prayer requests

PostPosted: Fri Feb 01, 2013 8:54 am
by anlptgtsg
Praying. Thankful about the medical expenses covered.

Re: Health-related prayer requests

PostPosted: Mon Feb 11, 2013 7:32 am
by Sheenar
So, ever since I had that bad virus, I've been having more food issues. Hence the GI doc looking into if it is a gall bladder issue (that checked out okay) or possibly gastroparesis (haven't had that testing yet).

I can no longer tolerate any raw nuts at all. I get pretty bad pain in my stomach if I try to eat them. I also have started getting pain if I eat raw fruit or raw veggies --everything has to be cooked or I do not tolerate it well.

It is frustrating how my body keeps changing and I keep having to readjust. I see my GI doc tomorrow. Will talk to her about this. Am going to be starting cooking all fruit and vegetables and eating smaller, softer/easier to digest meals and see if that helps my symptoms.

Please pray. I am getting weary of so much of my life being controlled by food and what I cannot eat. I have to plan out everything and pack a meal or snack to take with me if I go out somewhere. I'm trying to develop easy-prep techniques to make it easier to prepare snacks and meals for each week.

Good news, though: I am finally caught up on rest and am feeling pretty good today. :)

Re: Health-related prayer requests

PostPosted: Mon Feb 11, 2013 10:47 am
by ClaecElric4God
Praise the Lord! Glad to hear you're having good day. I'll be praying for you. This must be really hard for you to deal with, and it's encouraging to see you still trusting God with your problems.

Re: Health-related prayer requests

PostPosted: Fri Mar 01, 2013 6:52 pm
by Sheenar
So, this past Saturday, a friend needed me to take her to the mall so she could return something. She needed to take her scooter and I offered to put it on my lift on the back of my car.
I need to remember that I am not Super Woman. I hurt myself pretty badly tightening the straps on the lift (I haven't used my lift in at least 8 months because the straps are difficult to use). I didn't expect to hurt myself like this, so I thought, "Oh, I'll be a little sore, but it won't be a big deal."
I was wrong. I hurt a good bit. Dr. said I have pretty badly sprained the muscles in my arms, legs, and back. My left arm and leg are the worst. My muscles burn like they are on fire. Some are contracted and won't relax --some spasm. I'm having trouble using my left hand. Dr. said there's nothing to do but see the DO (who does adjustments and crick-cracking stuff to get things aligned again)--I see him in 10 days, which was the soonest available appointment.

I am upset with myself. And frustrated about the stupid straps the company sold me when there were options available at the time that don't involve me hurting myself trying to use them.

Please pray. I don't want to seem like I just come on here to complain. I am just hurting a lot and not having much use of one of my arms is making things difficult as I keep using that arm out of instinct and cause it to hurt more.

I also have a test at the hospital on Monday morning. It involves fasting, which tends to be rough. Please pray that it will give us clues as to why I'm having my stomach/eating problems.

Thank you, friends!

Good news, though, is my HMO let me know that the geneticist/metabolic specialist my dr. wants to refer me to is also at a hospital/clinic that is in-network. Dr.'s office got that referral in --now I am just waiting to hear back from the specialist's office as to whether they will see me as a patient or not.

Re: Health-related prayer requests

PostPosted: Mon Apr 29, 2013 8:33 pm
by Sheenar
I've been having a rough patch, but am doing alright --still able to work in the garden some, go to church, and do things I enjoy. So life is good overall. :)

I have an MRI of my brain scheduled for next week on Wednesday. Please pray. I am nervous. I have had many MRIs--the test itself is not what I am nervous about. I am nervous about the results. I've been having more stuttering, slurring of words, word-finding difficulties, and episodes of staring into space. Cognitive issues. More hearing loss. More sensory processing issues. I am praying that everything comes back normal --but at the same time, I wish they'd find something to show that I'm not making this stuff up, I'm not a hypochondriac, and I'm not crazy. Validation. There is a real disease process going on and we need to find out what it is.

Please pray, friends. Also, I have an appointment with Genetics in June. I have been gathering research articles to make my case to have my muscle biopsy sample sent off for genetic testing. I'm praying something comes through soon. I'm ready to get off this rollercoaster of being dismissed by doctors (I have had several who essentially treated me like I was crazy) and being misdiagnosed. Even though there is no cure for mitochondrial disease, I still want to know what disease I have so I can put a name to it (and so my supplements can be tailored to a specific disorder to help with quality of life).

Re: Health-related prayer requests

PostPosted: Tue Apr 30, 2013 3:44 am
by ClaecElric4God
Praying, Sheenar. I really hope you get some of this figured out. Praying that God will introduce you to a doctor who can and is willing to help you.

Re: Health-related prayer requests

PostPosted: Tue May 07, 2013 7:19 pm
by Sheenar
My MRI is tomorrow morning at a hospital downtown. I will be at the hospital most of the day (have lab work after the MRI). I go back downtown on Thurs. for my follow-up visit with neurology. Going to be a long couple of days...

Some good news: After waiting since January (long story), I will finally be starting occupational therapy soon. Just have to get medical transport ironed out. :)

Re: Health-related prayer requests

PostPosted: Wed May 08, 2013 10:40 am
by anlptgtsg
praying you find out what is wrong.

Re: Health-related prayer requests

PostPosted: Thu May 09, 2013 10:26 am
by Sheenar
Please pray, friends. I am really anxious about today's appointment. Trying to focus my mind on God and that He is in control --and that He will walk with me through whatever may happen.

Also, please pray about a situation with medical transportation. I've been told that, according to a protocol set by the State of Texas, medical transportation cannot take me to my OT appointments because I am over the age of 21. They will transport me to PT (physical therapy), but not to OT. They also will not transport to dental appointments. Medicaid pays for OT visits and an annual dental visit --but won't pay for or provide transportation to get to these appointments.
I am going to be contacting my State representative as well as the Medicaid ombudsman. Please pray for favor with them and that change will take place.

Re: Health-related prayer requests

PostPosted: Thu May 09, 2013 7:01 pm
by Sheenar
Follow-up appointment went well. MRI is normal. Neuro ordered an EEG (is scheduled for July) to see if I am having seizure activity --I will have to stay awake the entire night before so that they can flash lights at me like I'm in a private dance club for one. haha
Will then follow-up with a neuromuscular specialist they are sending me to in their clinic.
Grateful for doctors who take the time to listen, who show they care, and who want to get to the bottom of what is going on.

Re: Health-related prayer requests

PostPosted: Fri May 10, 2013 12:13 pm
by ClaecElric4God
Praying.

Re: Health-related prayer requests

PostPosted: Sun May 26, 2013 3:53 pm
by Sheenar
I saw an orthopedic specialist on Friday for my shoulder injury. He's ordered a MRI of my shoulder to see what's going on --he said that I should be able to regain the functionality of my left hand that I lost when I injured my shoulder pulling the lift straps.
He wants me to go see a spine specialist --I'm experiencing a great deal of pain in my spine that's been worsening since my car wreck. I have to go to my PCP and ask her to order a MRI of my spine so I can go see the specialist. I cannot sit or lie comfortably in any position. I haven't been resting well. Sitting in a chair (at a doctor's office, at church, anywhere) is very difficult. I was given some pain medication, but still am not resting well.
I have some other upcoming specialist appointments. I am hoping that these acute issues get taken care of/resolved soon so I can have a nice, long break from seeing doctors. I just want to coast for a while --no more tests, no more appointments --just want to use the time and energy I have doing things I enjoy (like finishing all those partially-completed projects I have, working in the garden, reading, etc.)

One cool thing: I will be helping on the Advocacy and Education/Awareness committee for my local UMDF chapter (UMDF is an international organization that offers support for patients with mitochondrial disease and their families --as well as doing advocacy to get more research funding and bring awareness of this disease). Our first committee teleconference call is this Tuesday. Such a cool opportunity God has given me to help. :)

Thank you for praying, friends.

Re: Health-related prayer requests

PostPosted: Tue Jun 18, 2013 2:18 pm
by Sheenar
Having a pretty rough day pain-wise. Was doing a bit better in that area --but a medical transportation issue yesterday resulted in a long walk for me and a lot of pain today.
I find out my MRI results next week on Wed. I pray that my shoulder is something fixable and not a "new normal" for me. Still haven't heard back from my primary care doc's office about sending me to a spinal specialist for my back injury (from the car accident). It's still very painful to sit and lie down. PT is helping some with the pain, but I'm still hurting. Had to stop taking the pain medication weeks ago because it triggered GI issues. Trying 100% ginger root tea to see if it helps with the pain and inflammation.
Something's got to give. And soon. I am burned out with all the medical stuff going on. All I want is to be able to live--volunteer, make jewelry, even work part-time --not spend so much time and energy on medical appointments/related things. I need a break from medical stuff --very badly!

Re: Health-related prayer requests

PostPosted: Tue Jun 18, 2013 7:03 pm
by ClaecElric4God
Always praying for you Sheenar. I hope God shows you the light at the end of the tunnel soon.

Re: Health-related prayer requests

PostPosted: Sun Jul 21, 2013 6:45 pm
by Sheenar
Just returned from 4 days at camp. It is a camp called Camp Blessing --I attended the week for adults with disabilities. Was a VERY needed break from doctor's appointments, phone calls, etc. :)

This week is a marathon week of appointments (except for Wednesday when I have nothing scheduled). I see the spine specialist and start PT for my shoulder on Tuesday. Have PT and OT again on Thurs. Then I have a medical test (EEG) early Friday morning (have to be at the hospital in Houston at 7:00 am) --have to stay awake the entire night before. Going to be rough.

I woke up this morning with my stomach hurting and feeling very nauseated. Started running a fever this evening. Have hardly been able to eat anything today. My caretaker will not be able to come tomorrow as she cannot risk bringing home anything to her immuno-compromised husband. So I will be fending for myself.

Please pray. This is not a good time at all for me to get sick (not that any time is a good time --but now is especially not a good time). Please also pray for the medical appointments this week --that answers will be found so that treatments can begin. I start my new job next week on Wednesday and I want to start off on a strong note --I pray that I will be able to sustain the job long-term --it has been what I've been working toward for the past 2 years.

Re: Health-related prayer requests

PostPosted: Sun Jul 21, 2013 6:55 pm
by ClaecElric4God
Praying.

Re: Health-related prayer requests

PostPosted: Wed Aug 14, 2013 7:19 pm
by Sheenar
I forgot to update this.

In brief, MRI of my shoulder showed a tear in the labrum (soft tissue). Am doing PT to try to strengthen the muscles around it so that the tear can (hopefully) heal on its own. My goal and hope is to avoid surgery.

MRI of my spine came back clear other than a minor slipped disc in my neck. Am being referred to a fibro specialist to hopefully find better pain management.

My insurance company (HMO) sent me a letter on Monday stating that they are pulling all dental coverage effective Sept. 1st. So I went and got my exam/cleaning on Wednesday to get that in before the change. Found out I need 3 fillings --which aren't covered, so I am researching to locate sliding-scale dental clinics in my area.

Job is going well --the shifts just fly by --coworkers and supervisor are wonderful, the work itself is engaging. The main issues are pain and fatigue. In the past few weeks, my muscles have started spasming more severely than normal and I've started getting Charlie Horse -type muscle contractions all over my body. Very painful. Working in PT on techniques to hopefully get muscles to relax and to get the pain more under control. I cried during PT yesterday because my muscles started contracting during exercises and it HURT.
Going to make a more concerted effort to keep up with my home PT exercises and continue to work hard in PT. Not going to give up.

Had a really good (and hopeful) meeting with my job coach this week. We're going to be coming up with ways to make things more ergonomic and efficient at work to reduce pain and fatigue. :)

Re: Health-related prayer requests

PostPosted: Wed Sep 25, 2013 3:07 pm
by Sheenar
Trying to keep this short and not overwhelming.

Rush of specialist appointments in the past few weeks. Lots of testing ordered. Lots of bloodwork drawn (16 vials total between Monday and yesterday).

Having a nerve conduction study done on Monday and Tuesday (broken up because of insurance). The last time I had one, I cried like a little girl because it hurt so much. Definitely not looking forward to it. But it's the way to test for nerve damage, so I have to just get through it.

Other tests are pending.

I am concerned because I am losing weight. I am below 150 pounds now and that scares me a bit. I haven't been at this weight since junior high. I eat, but am still losing. Wonder if maybe nutrients aren't getting absorbed properly.

Please pray, friends. Pray that the nerve conduction test will go well and that my pain from it won't be high. Pray that all this testing will give some answers and provide groundwork for courses of treatment.