Tuesday, January 14, 2014

We have to be realistic, Sarah. (Intense update.)

I took the [three out of four] kids to the production of "The Sound of Music" last night. It was awesome... even in Hebrew. There were some very... interesting lyric substitutions, but it very well done. I just wanted to put in a nice happening before I get into some very difficult writing.

In the past two days I have seen my almost-new GP, and Dr. Z, my pain specialist.

From the GP:
A referral for a colonoscopy because of the ongoing diarrhea issues.
A referral for a small surgical procedure I need to have done soon.
Two very short sentences which are loaded with impending hardship.

From Dr. Z:
it was a difficult appointment. I cried the whole time we were talking. I told him that I need my quality of life to improve. I sleep away so much of the day (almost all morning until 11 usually, sometimes 12). I go to sleep between 12 and 1. By the time I've given all the kids what they need, it is about 10. It's impossible for me to go to bed at 11 and be able to take care of the house as well. There is no magic person to do that for me. I need some "me time", since I have no morning to speak of. There is laundry, kitchen cleaning, emailing and maybe writing if I have it in me.

I want to sleep only 8 hours. That is reasonable.
But I am on hard drugs, and that makes it not reasonable... for me.

Dr. Z asked me about my pain; from 1 to 10, how would I rate my different pain issues.
My answers:
-Left hip where I may have a hip replacement, pain level: 3-4 on a usual basis, 7 on bad days.
-Right hip which needs surgery for impingement (the syndrome I also had fixed in the left hip two years ago- called FAI): 4-5 on a regular basis.
-Gapey/muscle pain/mesh surgery nerve pain: 3, but 6 when it gets bad.

This left us with an account of what I am up against, even *with* all the meds.

I walked away from Dr. Z with:
swollen eyes
a prescription for a higher dose of my Fentanyl patch (going up to 100mmg from my current 87mmg)
A new prescription for a trial of Lidocaine IV's. Putting Lidocaine (what the dentist uses for teeth numbing) directly into the blood stream is a possible way to go off the Depalept, which has bad side effects. Depalept is my present nerve pain med. I, myself, cut the dose in half about two weeks ago, in a desperate attempt to control my life a bit. Dr. Z said it is fine that I cut the Depalept dosage in half, and if the Lidocaine IV's work, we will take out Depalept completely.
The biggest problem with the Lidocaine IV's is that it takes an hour and a half, once a week.
It's a bit like 'out-of-the-frying-pan-and-into-the-fire', you know? I loose more of my precious time awake. On the other hand, the appointments will be at 10am Tuesdays (starting tomorrow), and that will get me up early. When the IV is finished I can go to the nearby cafe and get work done on my book. I plan on arranging the afternoon so that I will be freer until later in the day. (Tuesdays Azriel gets a ride home from school, and Shifra can walk home, so I can realistically stay and work at the cafe for a good block of time (if the cafe doesn't kick me out for not ordering much). It's possibly a blessing in disguise, but that remains to be seen. Dr. Z said that the Lidocaine comes with no side effects, and if we chose to go off it, there is no issue of withdrawal.

This is a lot to take in. No wonder I am tired all the time.
Taking hard medicines, dealing with a steady current of pain accented by hills of more pain on a regular basis, while being the best mother and home-maker I can be. Dr. Z reminded me that having pain is tiring. I had forgotten that. He wants to get the "pain scale" numbers down. That is his job. So, instead of walking away with less drugs as I had dreamed, I walked away with more. He said, with sincere caring in his voice, "Sarah, I want that for you, but we have to be realistic".

Too much on my plate. My eyes are still puffy... it's been a day like that.

Good night.
(It's midnight now, and I have to be at the clinic tomorrow at 10am for the first Lidocaine IV. That is nine hours of sleep... wish me luck.) I am taking my computer with me.

PS- did I tell you that I have been feeling flu-ey every evening with low-grade fevers? I told both docs, neither had anything to say about it. I am just too much to deal with.


  1. Thoughts, prayers and loving thoughts being sent to you, via Express Mail...

  2. Hope the new medication routine helps and you find more time for yourself. Blessings and caring thoughts are being conveyed to you.

  3. thinking of you and praying for a complete refua. right now, this is what has to be done. rochel.

  4. Thinking of you, and optimistic that you are on the path to change and writing.
    Love, Miriam