Best Wishes for a New Year

Well, it's been a long, long time since my last post - September 2009 - and it is now January 2010.  No, I didn't get bored of this or tired of it - I was and still am in a bad way, in a huge slump.  I didn't want to post and haven't been using Twitter much either lately because my health, my migraines - the constant, unrelenting pain - has gotten to me. 

I try to be upbeat and project positivity, but was unable to for awhile, and maybe still. 

I did not want to post depressing or hopeless feeling posts where people would feel sorry for me or feel the need to comfort me.  That's not why I started this.  I do appreciate all the well wishes and all the comfort that has been offered to me and won't turn it away.  But, I started this to write about my feelings about my illness, how it's going and to be upbeat.  Sometimes just writing about it helps me to think more positively and that wasn't possible for me for awhile. 

Like I said, maybe not yet - but let's see.

The pain has gotten worse - or more correctly - I'm feeling it more and less able to separate myself from it.  It's been constant for two years now along with ringing ears and feeling faint and all the other drama.  I was able to still see myself through it - like point to "that's me" and "that's the migraine" - but when I look for me lately, I can't see through the pain to me. 

Even in looking for words it's like my brain synapses fire off to find the word I want to use and they get stopped by the pain and have to reroute and reroute and reroute to find a way to the other connection - the word.  So far, for the most part, eventually I find the word - the synapses connect.  But it takes longer and I can feel it's the pain stopping a faster connection.

That's hard, I miss me, my husband misses me, my children somewhat miss me (21 and 17 yr old boys have a lot of other things on their plate), my friends miss me, my family misses me.  Even when I'm right there, they can tell I'm not - that it's pain me, no separation. 

I hate that so much because before even though the pain was the same and constant I could see me and so could others.  I know I'm in here!  Now, the pain has increased and my doctors have increased some meds in December to combat that - some medications, adding a magnesium oil to soak through my skin, some straight up IV fluid just to hydrate me, some electrolytes to help hydrate me.

I see my acupuncturist who is incredible.  He told me last session as he walked out afterward, "don't worry, I'll never give up on you."  So I cried because it was just what I needed to hear - from a medical person.  I've heard the same from my neuro but not lately.

Had a suggestion from my narcolepsy sleep doctor and then my neuro that perhaps I try some medication that I refused.  It would take the last bit of control away from me.  They argued that don't I feel out of control now and I said yes, but not like that would make me feel out of control.  Upon telling my neuro some personal info she backed off and completely understood.  I'm not mentioning the medication here for two reasons.  One, I don't want anyone to suggest I try it anyway and two, I don't want to start a controversial conversation on the subject. 

It did make me think more about control.  What I've given up and how much I have left and how to hold on to it and make it grow.  I still don't know the answers to these questions yet, but it's a good and healthy project.  I'll let you know how it goes. 

My husband misses me so much he told me he's lonely even though we spend time together - he wants me.  He wasn't trying to hurt me even more although I did cry which angered the migraine monster so I did hurt more.  He was just needing to express his frustration at my disability.

I do not want to go on disability.  I have been allowed a reduced (for my profession as a CPA that's 40-45 hrs a week) work schedule and work almost exclusively from home.  I'm a great worker and great at my job but it takes longer, more thought, more patience with me and by me to get it done, then it's still a great product.  I work mostly on highly technical research and international tax issues.  I am able to do that so much easier from home because I am dealing with being a consultant to the consultants rather than dealing directly with clients for the most part.  I work with the clients but am not the client manager so that relieves a lot of burden.

I have to keep working and keep providing for my family.  That's the fight my pain and I are having.  That's the fight my disability and I are having.  I am going to win.  As long as I set boundaries, keep the boundaries, respect my disability, continue to get support from work and home, and find myself again.

One quick note on the magnesium oil, it does seem to be helping.  I take so many meds for so many conditions and not as many meds as I do supplements and vitamins and the pain is making it hard for my body to absorb it all digestively - the magnesium oil combined with water and sprayed on like a lotion and rubbed in helps get the magnesium and more hydration in through my skin.  I will say my mood has improved since starting it and a thank you to my acupuncturist for sending me to buy it.

So, Best Wishes to You All for a Happy New Year and for me to find me again.  If you see me let me know.