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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.

My cray cray health update

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I know that I haven’t been writing on here for some time and for good reason.

I have just returned from a fabulous journey to the hospital for the past 2 weeks. And was terribly sick a few weeks prior to that.

As it turns out, I had a virus. We still haven’t figured that out, but it consisted of fatigue, high fevers, mouth ulcers a rash on my hands and feet. The doctor put it down to hand, foot and mouth disease and sent me home. Sadly everything got so bad that I ended up having to take myself to ER where they immediately put me on IVs and other things.

The hospital and doctors at UCSF were completely confused by what was happening. This ended up with me being quarantined and a million tests being performed, including bone marrow biopsy, spinal tap and a tons of other stuff.

Eventually they figured that the virus had gone. They couldn’t treat anything for lupus until that was gone because any drugs would make the virus worse. So they started treating me aggressively for lupus with high doses of steroids.

Finally, I am out of hospital and at home with an aggressive medication routine. I also got some infection in my spinal cord which means I can only walk with a walker and have 24/7 homecare of friends and my Mom is coming this evening. Oh and I have home physical therapy a few times a week.

I guess that is the update. I’m doing ok and am just looking forward to fully recovering.

Thanks for everyone’s thoughts and wishes, it means a lot. 🙂

BTW, you never want to hear a team of doctors tell you that you are one of the most interesting cases they have ever worked on. And side note, the UCSF teams were awesome. I had internal medicine, rheumotology, neurology, dermatology, infectious disease all working on my case. I’m pretty sure they saved my life.


Update as of Sept. 15th

Reading back on this post I realize how little I knew about the condition I left the hospital with.  I think that when I wrote it, I didn’t even know the name of what I was diagnosed with.  This could be in part to the doctors lack of explanation to me or that I was on painkillers and don’t remember a lot of my hospital stay.  At this point, I am actually disappointed that I had no real explanation of the severity of my issue.  Pretty fucking scary if you think about it.

What is actually turned out to be was NOT a virus.  It was not hand, foot and mouth that my rheumatologist sent me home with.  It was my lupus.  In addition, the “infection” of my spine that I talked about turned out to be a pretty rare and serious disorder caused by inflammation of the spine called transverse myelitis.  The inflammation was caused by my lupus as well.

The actual way that I was diagnosed with the transverse myelitis when I was in the hospital was when I tried to go for a daily walk and collapsed on a nurse.  My legs were just not working anymore.  Had I known now what I know then, that paralysis is a big part of TM, I would have freaked the hell out.  So, sometimes, ignorance is actually bliss.

And while I do give credit to the doctors at UCSF hospital, I can’t help feeling like I was largely ignored by some of my regular  doctors.  Certain symptoms had gone on for months and months with no real action despite me having voiced repeated concerns to my specialists.  Admittedly, it was not a cut and dry case.  Nothing in lupus is.  But I do believe that more could have been done to potentially prevent or minimize some of the damage that has happened.  Maybe that is me looking for someone to blame.  Damage is done at this point, so the only thing to do is move on and get better.

 

Another day, another doctor

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Went up to the Urology department today to find out what is going on with my urination problem.  Had a quick checkover and then tests ordered for a bladder scan in a month.  Guess I’ll have to wait and see what the outcome of that is.  Sigh.  Neverending tests and waiting.

Weekend Update

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Not much to report for the weekend.  Had a bit of a bout with some bad Indian food and also have been dealing with my sinuses.  Other than that it was dandy.  Spent the weekend curled up watching Home and Garden TV. Also went to see The Secret World of Arriety.  It was cute, if not a bit slow.  The weather here has been really rainy which means a lot of indoor time.

This week I have appointments to see the Opthamologist about my vision issues and also got in with the Urologist.  Yay.  Finally getting fixed – hopefully – slowly but surely.

It is not MS

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OK.  It is Lupus.

But it isn’t MS.  Thankfully.

I spent Monday at UCSF getting poked and prodded with the Neurology department.  My Rheumy was worried that some of my symptoms were signs of MS, so they set me up with an emergency appointment.  I had a lot of vision tests and some other physical tests including a bladder ultrasound.  At the end of it all the neurologist deemed me normal and MS free.  Yay!  So back to the drawing board, but at least one thing is checked off the list.

Rheumy Update

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I am back from my trip to Spain and managed to make it relatively unscathed.  Had a few issues while I was gone, but managed with the thanks of colon hydrotherapy to get them sorted out.  Thanks to Studio Australia who were awesome and helpful on that issue.

Went to the rhuemy yesterday after having an entire day of the worst migraine on the planet.  Told doctor about the myriad of issues that I have been facing including the pee issue and the vision.  He said that I am “an interesting case” whatever that means.  He did mention that it was good that both my eyes started going blurry at the same time instead of one and something about MS.  Great.  I decided to ignore that mention and not google too much about MS.

Had the usual ton of blood and urine tests.  Still need to schedule my lung function tests and an echo.  Same same.

I am supposed to call the rhuemy back on Monday to find out if I should go and see a neurologist for some of the confusion and other symptoms I have been having.  We’ll see what he recommends then.

Other than that, I have adjusted back to this timezone and apart from the typical annoyances things seem pretty good.

Day 2 – Travelling

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On day 2 now and feeling pretty decent for a change.  Still haven’t pooped, but I did bring a giant jar of Miralax with me and am doing my best to keep on with it.  The weather is nice and sunny with a bit of a chilly wind.  I am being sure to put on lots of sun protection.

I am also doing my best to get a lot of rest.  I woke up early yesterday and sat around the hotel room until noon.  Then went into town for some shopping and lunch with friends.  Afterwards, I came back and took a 30 minute disco nap before having my massage.  The massage was not very great.  Amateur masseuse with strange technique.  That is always a huge disappointment.

Ended up ditching my friends for dinner because Mr was so tired after his long day working.  We opted to order some gross room service and a bottle of wine instead.  Fell asleep pretty early, but then woke up at 2am and couldn’t get back to sleep.  I eventually took an Ambien and read some before passing out again.

Woke up, or should I say, was woken up this morning at 7am when Mr was getting ready to go.   Couldn’t go back to sleep.  I went down and had breakfast from the buffet including 3 chocolate mini-donuts (ugh, why did I do that?), drank a few espressos and now am back in the room to plan the day.

Thusfar, feeling good.  No longer achy.  Only problem is the lack of poop…