Now we're in January 2024.
Not much has changed. Still haven't scheduled with a rheumatologist. Feeling like garbage makes jumping through the hoops more difficult. Sharing information with a military base with an off base provider is a special kind of nightmare.
I stopped vestibular therapy awhile back.
Half of my thyroid was removed last year. The doctor is convinced all of the cancer was removed and didn't spread.
I'm trying to track everything- the weather. Change in soap. Change in supplements. Trying to figure out what triggers and what helps.
No correlation I can see yet.
If I get wobbly- meaning I can't walk straight. It's like my limbs are unattatched and I just wobble when I try to move- I tend to get over it by sleeping for a day and a half or 2 days straight.
Friends offer advice. Facebook suggests things.
Concussion related, stored trauma in the body, lack of faith, modern American diet, mold, lack of exercise..
I am so worn out. Every movement is taxing. Every thought. I just want to lie still and sleep.
I have zero immunity and a 5 year old in PreK at a public school. My body can't handle the constant onslaught of germs.
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October 10, 2023
Doctors still haven't been able to diagnose my symptoms. But they have been able to rule out diabetes, thyroid hormone imbalance, any neurological problem- no stroke or mini stroke, no AVM, no aneurysm- no cardio problems. No infection. No sinus or inner ear/ middle ear problems.
Next up: Rheumatology
Lots of help from family and friends. Rides, babysitting, meals, cleaning, prayers, checking in, visiting, snacks, lawn mowing, purging and lots of other offers to help. We appreciate it so much. Thank you for keeping us afloat.
I am feeling pretty rough right now. Super shaky. Brain fog. Weakness and fatigue. The simplest things take forever. I can't really get anything done. (I have been working on this post on and off for almost 6 hours)
Every day there is dizziness, lightheadedness, weakness, exhaustion and nausea. Most days tingling and numbness. Severe vertigo is an occasional thing now. I am rarely hungry but make sure I eat every day. Making healthier food choices when I do. I am always drinking water.
I walked around the house with the dogs and my cane today- not the whole yard just the outside of the house. I also (slowly) went up and down 2 flights of steps (with a platform, just 1 story) once.
I wanted to paint today but I am too worn out. I also wanted to clean a load of laundry and vacuum and those didn't happen either. Although I did shower.
The vestibular therapist insists I need to exercise and just push through my symptoms more. Strengthen my core!
That usually makes symptoms worse. But it's almost the only way to get anything done. It's strange- there has been some progress with vestibular therapy but some days I can't even begin. I don't know if the vestibular therapy is really helping or if it has more to do with the weather and how much sleep I have had.
I can't scroll on my phone- fb or even my contacts list- it makes me feel sick. I'm like a cup of water being poured out. Everything saps my energy. I listen to audio books. I watch TV and color. I have tried to learn new hobbies I can do sitting, like crocheting, but I can't seem to get it. I sleep a lot.
If I cook I have to sit on a stool. My specialty these days is cereal. Laundry often lives in dirty clothes hampers or on the dining room table.
We have slowly purged quite a bit from our home to make it easier to manage.
My priorities are changing.
So far it has been 149 days. 4 trips to the ER + 6 more days inpatient hospitalization. 4 biopsies, 8 doctors (outpatient), 5 different facilities, hearing test (perfect), swallow test, 6? MRIs, 1 EEG, 3? CT scans, at least 4 EKGs, stress test, 1 surgery, 2 ultrasounds, 1 episode of paralysis ...🤔 2 ambulance rides.
Lots of questions and few answers.
I'm not scared. I'm not worried. I was a bit in the beginning but now I am accepting this is my family's new normal. Of course I have gone through the grieving process- anger, frustration, fear. But then I pray. Any my friends and family pray for me. And the Lord hears and answers. And we know everything will be OK. Whatever that means- live or die, cancer or autoimmune issues- trust the Lord and keep moving forward.
A year ago I could not have felt this way about a potential cancer diagnosis.
But now I mostly am looking at these limitations as a puzzle to figure out. Learning how to manage symptoms and where the new limits of my abilities are.
How do I still meet my family's needs if I can't do it the way I have been? (Right now this is the trickiest part for me.)
Do I feel prepared to meet God?
Am I ready to die?
Is my family ready for me to die?
I am at a point where I think, pray and talk about these things calmly. Others aren't as calm. I am not depressed! I am being realistic and practical. Of course I want to live to meet Rooster's children! But if that happens in the next life rather than this life for me, that's OK, too.
I told Aiden death is like moving far away. We will have less contact but I will still be keeping tabs on them and helping them as much as I can no matter where I am. We've been sealed in the temple so our family relationships won't change. Eventually they will all move and we'll be together again. Our family has been split across the country almost his whole life. We've learned to adjust and make it work. Death would mean another adjustment but we can keep making it work. I trust that. Trust the Savior do all you can to live as he shows you, repent and ask for his help when we make mistakes and are in over our heads. He's gone first and we can trust him to know how to get us where we want to be.
