Thursday, April 2, 2009


I'm really trying to work on acceptance and am finding it's a circular rather than linear process. There are moments when I can accept this new reality. This is usually followed by some fear because I find it quite scary to admit to myself that I'm this sick. And that I really did lose all that I did.

A couple nights ago I was watching a very interesting documentary about the first plague that hit in the 14th or 15th Century wiping out close to half the population in the world. As I watched I tried to put myself in their place wondering what it must have been like. It sounds horrific. I was struck by this fact: new life came out of that period of time. The Renaissance Period followed this period of darkness and death. It was a good reminder that rebirth follows death. The word Renaissance comes from a french word meaning rebirth. I believe that psychological rebirth follows the psychological death experience. I just have to get there.

How do I do that? I think it means bearing the unbearable until something new arises whether that new thing is a new attitude, a new relationship with myself, acceptance, a sense of peace, who knows.

I don't know what's next. I do know that this is a very difficult reality to get used to but I'm convinced it's possible because others who have commented on my blog have said so. Right now I'm taking it on faith.

Treatment Updates:

I've been taking Amantadine since Saturday. This time my doctor prescribed liquid Amantadine because I can't swallow pills. He says Amantadine is not only an antiviral but also helps the brain produce dopamine and norepinephrine-both of which can become depleted in the brains of people with CFIDS. It's too soon to tell if it's helping.

I started back on D-ribose three times a day. I'm glad to report that I'm not feeling as much cramping in my muscles (especially the calves) and not as much muscle pain.

I've increased my potassium intake because my doctor thinks my potassium levels might be too low (causing muscle cramps). He wanted me to take prescription potassium. I picked it up at the pharmacy but the pharmacist didn't do a consult with me. I always crush my pills and my doctor knows this. For some reason I decided to look up the prescription on the Internet. I'm glad I did because the prescription was for extended release potassium. Had I crushed it and then swallowed the crushed powder I could easily have had a heart attack because it would have been too much potassium in the bloodstream. This is a good reminder for me to always look things up. I just can't count on doctors and pharmacists to provide the information.

I've been on the methylation protocol (simplified) for maybe eight months? I think it is helping a little. This is a very slow treatment to restore the methylation cycle. It can take a year or two for improvement though some people have had dramatic improvement in less than that time.

It's been two months, one week and three days on Valcyte. I think it might be helping a little but I won't know for sure until six months but in four might have an idea of how much it will help.

Sleep is challenging but I find that if I take 1mg of sublingual Melatonin, 300mg Gabapentin, 1mg Klonopin, and 20 drops of liquid doxepin that I can get at least 8 hours sleep but it's still a fitful sleep.

I have to figure out a way to deal with the isolation and loneliness of this. I woke up today feeling it acutely. I actually went out to get my blood draw a week early just to be around people. Then I went and picked up a prescription and sat in the parking lot and simply watched people.

There's just a lot to get used to.


Anonymous said...

I SO wish I didn't have this dang cold so that I could have come to have lunch with you today!! It hit full force last night - I am now at that hacking, sniffling stage, so it definitely would not have been good to expose you. But, it still sucks - I was really looking forward to seeing you today. I am SO glad you looked up the potassium medication before crushing it and taking it! I think, in addition to PhD, you have earned your MD and PharmD with all of this research you have done. Big hugs to you - I'll let you know when I get rid of this cold so we can reschedule our lunch, o.k.? Love you!!

Jozephine said...

Yes, I think you are right about acceptance. It's not linear. I'm not sure it's even circular. Try a spiral. That way, each time you go around you deepen your understanding.

Hang in there, it does get better.

Renee said...

I really like what you have said about the Renaissance Period that followed darkness and death.. I needed to hear this myself today with new medical condtions coming in to play for me, and a challenging and "dark" time for my husband and his ministry. Rebirth...renew.....born is the definition of my name, and your thoughts expressed about and what you are learning on your own journey with CFIDS have wrapped around me today as a reminder of all things becoming new again.
Glad that things are working for you and you are seeing some daylight with the V. and other meds/supplements. I do like what Bruce Campbell says about needing to have acceptance with a fighting spirit. And I believe that like Jozephine happens over and over again giving us a deeper understanding with each cycle.