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So sorry to hear you're feeling so sick. I'll definitely be praying that the Lord will give you some relief for Christmas with your family. And for your aunt.

Thank you.

No fever now for over 24 hours --just a lingering, annoying cough, sore throat, and sinus stuff. Saw my primary care doc today and they agreed that is is a virus --some upper respiratory thing that's been going around. Said I am past the worst of it and should be feeling better in a few days.

And the doc wrote a script for some cough medicine so I can actually sleep!

Hooray! Glad to hear it, and thanks for the update.

Fever came back --broke --came back --broke --for days on end (went almost 2 days with no fever --then it returned). Went to ER on Sunday night with a fever.

They said that, at that point, it was likely not viral, but bacterial (I have an upper respiratory infection--no flu or strep, thankfully!). So I was put on a z-pack antibiotic course. I already feel somewhat better since I started it yesterday morning (when I got home from the ER at 6 am). No more fever since I started the z-pack --just a lot of coughing and expectorating.

Also, "medicated chest rub" placed in the Scentsy warmer by the bed at night is amazing.

Thank you for the prayers.

Feeling much, much better!!!

The only symptom I'm having now is a nagging cough here and there. And still feeling a bit run down (tried to CLEAN ALL THE THINGS!!! and fizzled out shortly).

I got to see my family on Christmas, so that was an answer to prayer!

Good to hear, Sheenar! Glad you got to be with your family.

Very, very rough week.

2 ER visits. Something is going on neurologically. Told to follow up with my neuro ASAP --he's going to squeeze me in.

I'm scared. Please pray.

Praying, Sheenar.

Now in my 3rd week out of work (tried to convince my supervisor to let me try to come back, but that didn't work).

Still don't know what's going on. EEG normal. Blood work so far normal. Having a MRI of my brain tomorrow. Have been told to return to my specialists downtown.

I just want to go back to work. Morale is slipping. I feel so isolated. My aide is out this week due to medical issues. The apartment is a wreck. I am still feeling pretty weak and fatigued --still stuttering/slurring my speech here and there --but doing slightly better --though verbal communication has still been difficult and still having significant brain fog.

I'm going back to work this afternoon. My supervisor texted me yesterday to ask how I was doing --I told her I am doing okay (which is mostly true, but not completely as I am not back to my "pre-crash" level of functioning --but am doing better).
So, prayer is appreciated. Will see how it goes.

I'll be praying, Sheenar. You can do this!

Know I've been praying for you, my friend. Take things slow as needed. <3

Worked the whole month of February and this week --now I am off for the coming week for Spring Break.

Have been struggling still with symptoms --especially dysautonomia stuff. My cardiologist is trying to get me into a specialty clinic downtown. It's a pediatric clinic, but they also see adults with dysautonomia (in certain cases). I talked with their office today and they left a message for the nurse --they'll call back and let me know if they will take me as a patient or not.

Please join with me in praying that I get into the dysautonomia clinic. My cardiologist is not skilled in treating it and I am really struggling. Things have been rough in that area. Pray that this comes through!

Praying, Sheenar! I hope the Lord works this out for you!

I got a call today from the specialty clinic and I have an appointment in July!!!

Yes, more waiting --but that's not unusual at all for the Med Center --I am happy that I got in for an intake visit!

Praise the Lord! Glad to hear it. Still praying.

My supervisor at work (I work part-time --about 15 hours a week) has agreed to lower my hours so that I work 2 days a week instead of 3. We will try this for a while to see if it helps my level of fatigue. I have been so exhausted. Chest pressure, pain, shortness of breath (all related to dysautonomia --I just got an EKG a month ago --was told it is part of dysautonomia and my autonomic nervous system not working right). Just really having a rough time.

So I am very grateful for the reduction in hours! It means less pay, but I'm not worried so much about that --financially, things will be okay as God has always met my needs.

I am in the recliner again today with Marzipan (the kitty nurse) insisting that I stay put and rest. Rest is not easy for me as I am so used to going so much of the time --it is hard to be still.

I received a promising email from my new vocational rehab counselor today. It looks like Orientation and Mobility training will be approved for me --which will be amazing if it is! It would mean greater independence and the skills to navigate in my community more safely. And I would be able to apply for another dog once I complete training (a guide dog program is willing to train a dog for me once I have the training completed).

Please pray with me that this comes through. I have been trying for a year now to get this training.

Also, I am going to the Houston rodeo tomorrow with friends from church. I have never been and am really looking forward to it!! I am not feeling great today. I pray that I feel okay enough tomorrow to go! I want to go look at/watch the livestock events! They even are having what sounds like an alpaca costume contest! And a disc dogs demonstration! And mounted shooting!! Man, I am so looking forward to it!

Sorry I didn't see this till today. Did you get to go to the rodeo?
Also, I'll be praying for you.

I did go to the rodeo! It was fun, but overwhelming. SO many people! I crashed hard after (and was in a crash all day Sunday). But it was good --I enjoyed watching the events. Especially the barrel racing.

Well, I pray that things will improve for you. I am glad that certain circumstances seem to be adapting to fit your required needs. Wish you the absolute best of luck going forward!

Update: I had another EMG/nerve conduction study on Wednesday. Not fun, but thankfully I made it through the whole test! They switched to a pediatric needle and it didn't hurt so badly then. Should get results sometime in August (when I follow up with the neuro downtown).

Still having a good bit of autonomic nervous system issues. Blood pressure, temp regulation, blood sugar, etc. I normally see my cardiologist every 3 months, but I just saw him this month and go back again next month. Trying not to worry --but I wonder if there's something he's not telling me --he didn't explain the reason he wants me to come back sooner. Had a sonogram of my heart again, but didn't hear anything about it. Just gave me an order for labwork (which is usual --I always have labwork before every appointment with him).

I see the dysautonomia specialist in July. I'm praying they will be able to help.

I did invest in a cooling vest --have my high school reunion (but not official reunion, but a get-together of people from high school) on June 8 at a local park by the lake. It will be HOT (because this is TX). I figured that going and having "Hi people I haven't seen in 10 years" and fainting would not be good. So hopefully with the cooling vest everything will go well. It's a phase change one where I cannot get frost bite from the packs in the vest --and they can be recharged in an ice chest.

Another update: I have found someone that accepts private pay for Orientation and Mobility training --she even lives not too far from me (in the same county)! We're setting up a time to meet next week to go over things. I have some donation money, thankfully, that should cover a good chunk of the cost. Praise God that this is finally coming through!!!

Brief update:
Saw the dysautonomia specialists --they listed my condition as severe. Ordered a LOT of testing so they can determine what treatment(s) may help. Waiting for those to be scheduled.

Really struggling. Am short of breath all of the time now (O2 sats are normal --dysautonomia docs said it is because blood isn't efficiently being circulated to my core--heart, lungs, etc. and is pooling a lot in my feet/legs). Terrible fatigue with not a lot of activity.

Am working with a nonprofit to raise funds for genetic testing --docs feel that this may lead to clues for better and more effective treatment options.

Still am working part-time grading worksheets --about 8-10 hours a week. Going okay. Exhausting, but glad to still be able to do it.

Having to face the fact of disease progression. Family is distant (many don't live far away, but aren't present --they've distanced themselves from me). My best friend is moving 3 hours away. It's hard.

Still have been able to attend my ABF (Adult Bible Fellowship) class at church --that has been a blessing.

So very sorry to hear you are struggling, Sheena. I try to imagine the difficulties you face, and know how much God has blessed you with hope. It's truly inspiring, friend. I pray in the name of Jesus that your breathing would improve, your fatigue would lessen, and the non-profit could come through with the funding.

And praise be to Jesus in that during this trial you've got enough energy to continue with your job and that you're still able to be blessed by the Bible Fellowship!~

Thank you, Okami! I really appreciate the prayers and well wishes.

Had to miss work today because I'm in a crash (pushed myself to have a fun day with a friend on Saturday and am reaping the consequences--missed church yesterday as well). But it's okay. Rest days are okay.

Surgery on my ankle has been delayed (my ankle is a mess --cartilage broke down and bone has been rubbing on bone for quite some time --and it's pretty gnarly in there right now) --I met with my foot surgeon over 2 weeks ago to talk about surgery, but now there's a bunch of hoops to go through first before they can even schedule surgery.

I'm in a lot of pain and it's hard to walk much. More pain also = more fatigue. Have also had some rough mito days recently.

Please pray that everything gets straightened out soon. My foot surgeon says my ankle should feel much better once he gets in there and cleans things up. I'll be able to walk on it right away, so I shouldn't have much down time at all, thankfully.

Surgery is scheduled for Sept. 3rd! I pre-register at the hospital next week.

Praying, Sheenar.

Update: Had a special tilt table test on Wednesday where they measured blood flow --found out I am losing 50% of blood flow to my brain, heart, and lungs when I'm standing or sitting up. That explains the dizziness, difficulty thinking/finding words, shortness of breath, etc. Have been started on a med to help increase blood volume. Should hopefully help --was told it would take about 10 days or so before I start feeling a difference. Also have to eat a lot of high-potassium foods as the med affects that. My dysautonomia (my autonomic nervous system does not function correctly --the ANS is responsible for things like heart rate, blood pressure, movement of food through the GI tract, fight-or-flight response, etc.) is now rated moderate to severe --has progressed a lot in the past 3 years since my original diagnosis. It's scary and I'm struggling to cope right now. But I serve a big God and a faithful God --and He has all of this in His hands --and that is the safest place to be.

New news about surgery: depending on what my surgeon finds when he gets into my ankle (can only tell so much from a MRI), I may be non weight bearing for 4-6 weeks. Which would be a problem --especially in regards to where I work twice a week --there is simply not enough room to maneuver a wheelchair at the learning center. Hopefully we can work something out. I'm supposed to return to work on the 8th if all goes well.

Praying Sheenar. I don't even know what to say but my heart really goes out for you. Hoping your blood flow improves.

Praying for you and your surgery today, Sheenar. I hope all goes well! God is faithful.