kitkat2's blog

(...and Kiss Me Once Again)It's Been a Long, Long Time....

Submitted by kitkat2 on Thu, 2009-07-16 21:07

Old song I used to hear on Mrs. O'Connell's victrola back in 1972.  Ah memories.  She belonged to our church and my father had a penchant for teaching all eight of us the importance of respecting our elders and helping the needy in the neighborhood.  It was a simpler time when life seemed carefree and nothing hurt.  ;)

 

It has been awhile since I posted, so thought I'd type a few words.   A quick glance on the site seems to reveal what I'd hoped for: that most here are status quo or doing better.

 

Mepron/Azith. Blues

Submitted by kitkat2 on Mon, 2008-10-27 20:37

Just a record-keeping update:

 

Barely 9 days into it....I believe I have begun herxing from the Babesia treatment.  Muscle aches, abdominal pain, anorexia, diarrhea, nausea, and fatigue.  I stopped Mep/Azith for the past two days to recover a bit of the strength I had regained after getting out of that 'Hotel California' hospital.  Surprised to be herxing so soon...but I suppose it is a good sign.

 

Ch-Ch-Ch-Ch-Changes......

Submitted by kitkat2 on Sat, 2008-10-18 22:48

Happy to share that I have achieved my first PT goal and am now independent in my own home**yea!**  Now I can focus on strengthening my legs.  PT is bringing a walker on Monday so I can get started,.

 

Also, since I am kind of back to normal, I got started on the first leg of my Lyme/+coinfections with Mepron to treat the Babesia.  It is quickest and easiest to treat and once that is complete I can move on to treat the Lyme and Erlichiosis separately.  They are easier to eradicate after the Babesia is gone.  Two doses of Mepron so far.  I've read that it takes about two wks for the herx'ing to start--not sure if that is accurate.

Time will tell...

All I know for sure is that I want to get out of this wheelchair pronto.

KK2 Home From Hospital

Submitted by kitkat2 on Fri, 2008-10-10 14:17

After being virtually held hostage for three weeks in two hospital[s], I threatened to leave ama[against medical advice] so they finally discharged me.  I feel like I've been in a prisoner of war camp, but without the Stockholm Syndrome.  I feel no affection for those who tried to coerce me into getting a baclofen pump.  No sleep, meds that made me feel worse, therapies that didn't seem to help.  Seriously, I will likely need time to recover from the assault that was my hospital stay.  Post traumatic stress disorder.  Please forgive my writing this...it is merely to help myself process through this experience.

 

Road to Recovery

Submitted by kitkat2 on Tue, 2008-09-23 21:35

Have been in hospital since 9/15 to treat ms flare up.  Had one active lesion.  Three days iv steroids, now tapering.  Leg muscles not relaxing well.  Considering Baclofen pump implant.  In rehab center until strong enough to go home.

 

Stubborn rehab doc here cannot explain why Zanaflex makes me feel worse. 

Does anybody know if Zanaflex has sulfites in it?  This would make sense.

Sliding....

Submitted by kitkat2 on Fri, 2008-09-12 00:46

An update for the record.

 

After 2+ mos. off the abx, I reluctantly had to admit that I have a new, deteriorated baseline. 

 Ugh.

 

 On top of that I was worsening rapidly by the day, so restarted Azith 250 M-W-F.   It has always made me feel better in the past, so am hoping that will happen once again.  [??]

 

Four Week Fallout

Submitted by kitkat2 on Sat, 2008-07-26 23:56

One full month off all abx per severe prophyria.  During that time, I tried adding Iodoral to my skeleton crew of supps.  12.5mg tab did nothing, 25mg caused increased clonus, 50mg caused pounding heartbeat/insomnia/spasticity.  I shelved it for now.

I also restarted Wellbutrin XL to deal with increased depression/fatigue.  It caused increased clonus and some vague vision problems.  I shelved it, also. 

 My whole purpose in life has boiled down to reducing clonus at virtually any cost.

Looking For a Glimmer of that Summerdale Gold...

Submitted by kitkat2 on Wed, 2008-07-02 00:27

After nearly three weeks of living in and around my bedroom[and too discoordinated and weak to go elsewhere] I have come downstairs.  My sons set up a bedroom for me in my husband's office on the main floor right next to the powder room and just a few steps from laundry and kitchen.  I thought I'd be much happier, but the weakness and tight/wobbly, halting gait make me feel afraid to ambulate.  I force myself to traverse the length of the hallway[the one I had the energy to paint in March] twice daily by pushing a travel wheechair with hand brakes.  Each step requires much thought, planning and concentration.  Tiring and humiliating, but somehow through my fear I am doing it.