Sunday, January 06, 2008

What a struggle to get information!

I am in alot of pain and discomfort these days and the only let up is sleeping tablets which help me sleep for about 7 hours if I am lucky.

Really try to keep optimistic and my darling keeps me smiling . It's not easy blogging as I have to hold on to the w/chair for balance while trying to type with my fingernail of my right index finger.

It's a huge struggle.

Tomorrow my casemanager and the ergotherapist will be round to discuss my situation and see what sort of chair I need for sitting in all day and hopefully also organising a better cushion for me to sit on.

I have a roho cushion that you have to adjust manually and need a cushion that adjust the pressure automatically, even better if it were to vibrate as this apparently cuts the real dangers of pressure sores on my legs and bottom.

Even now still hopeful that any solutions can happen quickly instead of the usual three months that requests take.

Will try and stay calm, difficult as this wedsnesday I see the neurologist who recently told me that his second opinion was I had abit of M.S. Had been waiting for his second opinion since December 2006.

What a story, December 2006 he said he would look at the MRI's and in January 2007 he said he needed to make his own MRI's and finally June/July 2007 they were made. Had to happen at the OLVG hospital as the MRI machines at the VU are too small and despite valium I had a panic attack which was not helped by the most unhelpful and surly male nurse ever!

In August, he phoned and did not know why he was phoning, had no results promised to get them. I then made a new appointment for August, again he had nothing to tell me. The same in September and October and finally November he had the MRI's. This was because he asked me to phone the other hospital and get them to send the photos.

Took til 7 november 2007 to hear his second opinion!! So wonder if he will be more informative this wednesday.

5 comments:

Charles-A. Rovira said...

Your neurologist sounds totally disorganized.

Doesn't he realize that people are depending on him and his diagnoses?

Merelyme said...

please tell us what he said. things so important should not take so long. it is agonizing to wait.

Anne said...

"A bit of MS?????"

Is that opposed to "A lot of MS???"

Sometimes I wonder why we don't get a doctor's graduation test scores, so we can make a more informed decision whether or not he/she is going to be our doctor!

Keep on keeping on,
Anne

CHATTI PATTI said...

I have tears rolling down my cheek right now. My mother has had MS for over 20 years. My father is her caretaker. They are both struggling to get through each minute of the day. My parents have been married since my mom was 17 and my dad was 20. They are in their mid-60's now. May the Lord be with you always and through the pain and sadness that MS brings. Just remember that you have MS and MS DOES NOT HAVE YOU! God Bless both of you. I've written many things about my mom and her MS on my blog. Most of them are me venting hurt and anger over watching what this disease has done to both my precious parents. I will be your biggest fan b/c I realize and know how hard it must be to type with one fingernail. Gosh, how I admire you.

Diane J Standiford said...

Of course, Diane is reading posts in reverse again. I hear this a lot. Drs. must be stressed. The waiting is the worst, not knowing when a pain will end is torture, no wonder you are having panic attacks. Know that all this will pass. It WILL end.