Monday, January 11, 2010

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.

10 comments:

  1. I'm sorry things have been going this way for you. :( I have to wonder if the program at The Lemons Center might be a good fit for you. They are phenomenal people and extremely talented at what they do there.

    http://www.lemonscenter.com/

    Hang in there. Sending you good thoughts.

    ReplyDelete
  2. Magnesium oil, huh? I'm going to look into that.

    ReplyDelete
  3. I certainly understand how pain (and the fear of pain) takes over your life. Hoping life with pain improves for you this year, if not in pain control at least in pain reduction!

    ReplyDelete
  4. Welcome back, Elizabeth. Taking a break is never a bad thing, although it's unfortunate it was due to an increase in pain. Hang in there!

    ReplyDelete
  5. Thanks everyone for the comments. Diana - my therapist mentioned the Lemons Center to me again - sounds a lot like what I did at Michigan Head and Neurological Institute - I have down all the methods and don't want straight pain meds - but for financial reasons I have to pass right now, unfortunately, perhaps when finances improve I can look back into it - I've thought of going back to MHNI too.

    Stephanie - go to www.magnesiumdirect.com - they have great info and that's the product I'm using. Apparently skin absorption gets to your cells faster than taking orally. They have a section for migraines, sleep disorders, fibro, etc - click on product to see more about the product and info. So far, so good for me.

    Winny - you are so right about pain and the fear of increased pain taking over your life - it keeps me from doing a lot - I'm working on that - hard to fight fear of pain

    Heather - thanks, good to be back and I think I will be thinking more positively soon - even if the pain is still bad

    ReplyDelete
  6. This resonates so deeply with what I went through/am going through. It seems some meds are working and I get a reprieve, but the fear is still real. Holding you in my thoughts. Remember to love and forgive yourself.

    ReplyDelete
  7. Thanks so much - fear is definitely the mind killer - you are in my thoughts as well

    ReplyDelete
  8. Elizabeth,

    Wow! I'm so sorry things have been so tough. I heard what you said and I'm not saying that in a "I pity you" sort of way. I just feel badly that your pain is so bad. I certainly can relate to lots of what you said. Pain can truly "take control" and that's never good.

    I had never heard of magnesium oil. That sounds interesting. I have a horrible leg cramp in my calf most of the time lately and have been wondering if I am in need of magnesium (which helps prevent muscle spasms).

    Don't you just LOVE acupuncture?? I just love it so much.

    Since I have sleep apnea and fibro, I should definitely look into that magnesium spray.

    I hope you get some relief soon! I'm sorry it has been so rough but it's nice to see you here!

    Jeanne

    ReplyDelete
  9. How much magnesium oil do you take ? It says to take up to 64 sprays at a time and a footbath with 2 ounces.

    http://www.magnesiumdirect.com/products.aspx#guide5

    ReplyDelete
  10. Jeanne - I got the magnesium oil from www.magnesiumdirect.com - that's where my acupuncturist sent me but now my migraine massage therapist is going to start carrying it for cheaper - YAY!

    Anonymous - as to how much to use, I'm going to say I am not a doctor or expert and don't know if your situation is the same as mine, but I will tell you what my acupuncturist told me. For me, since I stay dehydrated (even though I drink tons of water all day and no caffeine or anything else really) he told me to mix half mag oil and have water and spray onto my arms and legs up to 3 times a day but if I do less, no big deal. This was to also get some hydration soaked in as well as magnesium but added benefit is that with just the oil, your skin can start to feel rough and with the oil and water mixed it feels like baby oil from back in the day and my skin is soft.

    In addition, after a hot shower while still wet spray down arms, legs and torso. He also suggested the foot baths but said it wasn't necessary - just another way to use it.

    I hope this helps you - you may want to consult an acupuncturist about it if your situation is different than mine.

    Thanks -

    Also - love to Jeanne - I know you aren't pitying me and I appreciate completely the support. You are a great friend.

    Elizabeth

    ReplyDelete