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Personal Journey

Health update 2

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Went to various doctor appointments today.  Got through them relatively unscathed.  The one thing that I did was take a fall in the bathroom this morning.  I was OK, but I think I scared the crap out of my mom.  I was reaching for something in the bathtub and lost my balance and fell over on my back.  I felt like one of those medalert old ladies that needed an alarm. “I’ve fallen and I can’t get up!”

Headed off to Rheumatologist around 11 to see him.  Had a good conversation with Dr. Gross.  We decided to change wean me of the prednisone (steroid) and put me on CellCept which is basically a drug that helps people not reject their organ transplants.  This will be good because the effects of steroids are pretty grimbo.  Stuff like moonface and fatty deposits in your back.  Plus weight gain and host of other lovely things.  We’ll start the CellCept after we get it approved by insurance because it is quite expensive.  I’ll slowly taper back the prednisone.  I guess the CellCept takes a few weeks to a few months to start to work, but people have good results with it.

Following that we had a nice little Jamba Juice and headed over to Neurology.

Met the Neurologist, Brian Scott, where we went through the history of everything.  And then did an examination.  He said that all of the not walking, etc. was caused by Transverse Myelitis.  I should expect to recover within 6-8 weeks.  Full recovery is not known at this point, but I suspect (being the pessimist that I am) that I might not fully recover from this.  There is a lot of weakness in my thighs as well.  Anyways, on the recovery, I can live with that.  Pimp out some canes and get going.

After that headed down to Urology where we made an appointment for Friday and picked up some catheters.

Then a haircut.  Man, I feel so much better.

Then a nice lunch at Anchor Oyster bar in the Castro.

Sadly, when we got back to the house the guys that were supposed to lift me up weren’t here and couldn’t be here for another hour.  So I ended up scooting myself up the stairs.  Good to know I have this skill.  Saved me $150 for the lift.

Next up, more physical therapy, pedicure and 4th of July BBQ here tomorrow and then Urology appointment on Friday.

Good stuff.


Pill popper

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Ugh. I am on so many medications right now that I had to write it all down to keep track.

Looks something like this:

Paxil 10mg 2-3 x days
Prednisone 40mg 1 x day
Hydroxychloquine 300mg 1 x day
Norethindrong 0.35mg 1 x day
Omeprazole 40mg 1 x day
Oysco 500 + D 500mg 2 x day
Hydrocodone / Acetaminophen 5/500 500mg As needed
Morphine Sulfate 15mg As needed
Lorazepam 0.5mg 2 x day (as needed)
Miralax capful 1 x day

Fun stuff.  Thankfully none of them make me feel ill apart from the daily dose of Miralax.

Hospital schedules

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OMG. You don’t even understand how crazy hospital schedules are. It is a really tough regime especially when you are sick and need rest. Mine went something like this.

5:30am Wake up to get blood drawn. Yeah. Nothing like being poked when you wake up.
5:40am Get weighed
6:00am Delivery of your nasty breakfast
7:00am Vitals taken
8:00am Rounds start. Those are fun. A bunch of people poking and prodding you.
Rounds continue throughout the day with various specialists so you can’t really rest
3:00pm Shower
4:00pm Vitals
6:00pm Dinner
7:00pm last of the rounds
8:00pm Attempt to sleep
3:00am Vitals and potentially meds

Exhausting stuff.

Health update 1

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Slowly getting better over here. Doing physical therapy 2 times a day with mom. I also am able to self-catherize. TMI. Still having back and side pains. Will be going to Rheumatology and Neurology appointments next week. Let’s see what they say. Other than that definitely on the mend slowly but surely. My mom has been a great help. So nice having her here.