Posted by: sistermom1 | October 11, 2009

Getting an Ass-kicking

MS has really kicked my ass this year. This is the first span of time since my diagnosis that I have felt this defeated and broken.  I am beginning to relate more closely to those people who have been broken much earlier in their experience of this disease. 

I did have three good years of mobility after being diagnosed, but because my gait had been so compromised, I had worn all of the cartilage of my right hip and had none left.  I was in constant pain, and after receiving two medical opinions, opted for a Birmingham hip reshaping operation in November of 2007.  I was told that this procedure would be less intrusive than a full hip replacement, and is typically recommended to people who are under 60 years of age and not overweight. (This was the first time in my life that I have been told by a medical professional that I was “thin” and “young”.  I was flattered….until I learned that most people who need this procedure are either over 65 years of age and/or morbidly obese…so much for that “compliment”!)

 I went under the knife in November of 2007, and the pain I was experiencing disappeared in the recovery room.  My initial therapy went well and I left the hospital after 2 ½ weeks with a walker.  It is now September of 2009 and I am still using a walker, sleeping on my side with extra pillows between my legs.  I still have a hospital commode next to our bed because I cannot make it to the bathroom quickly enough on my own power without peeing on myself.  (Having no muscle control will do that to you….) 

I have not been able to work for the past two years.  That is huge for me personally and impacts my entire family, as we do not have the money to do many of the things we are used to doing – a major issue for me personally, but it has seemed less of one for my husband, who alternately has been described by my friends as a “saint”, an “amazing partner”, and “a wonderful man” (Do you ever think that your friends often have a better appreciation for your spouse that you do?…)

We have come to believe that the procedure, combined with a need to come off of my MS meds for several months, touched off a major relapse, which has been a bitch.  As a result, my children have lost their heretofore physically active mother (and their “room mother” at school), my spouse has had to take over all of the family-related things that I had been handling over the past 14 years, and my friends have had to help me do everything from go to the bathroom (oh my God – you have holes in your underwear too!) to build and use a scooter to go to shopping or to lunch.

The resulting redefinition of all of my relationships has definitely come at a price.  Several women who I considered to be my close friends for years have vanished – unable to fulfill the changed requirements that friendship with me now entails.  Thankfully, in their stead, several other women have moved from the outer limits of my life into dead-center, and for that I am eternally grateful.  Some family members too have disappeared from regular contact.  This has pushed me to learn how to really forgive, forget and move forward happily and without regret (still a major challenge for me…).  Challenging on many levels, but I am working it out (more on THAT later!) 

My own image of myself as a powerful, independent woman completely in charge of her destiny and physical activities has had to change.  My work-life and identity have also been dramatically affected – I have not worked for pay since the operation…something that is challenging my ego as well as our family budget.  I have  defined much of myself by the things I am compensated for – a major mistake that many people make even without the wake-up call of a serious health problem.   And one I should avoid like the plague since I have been an executive recruiter counseling professionals about this identical point for 20 years….  So much for THAT lesson….

This ass-kicking is teaching me many things.  That I am more than what I do for a living.  That I am more than what I do for my children and family.  That I am so much more than what I believed myself to be, even though there are so many things that I physically cannot do.  I am actually able to make things happen without actually doing them MYSELF!   My prayers are powerful and make a huge difference in the world  – not only for myself but sometimes for complete strangers, and even for people who do not share my religious beliefs.

This has been and continues to be an incredible journey/detour.  Thanks for coming along with me – I so appreciate your riding shotgun with me….I am not sure what effect the Tysabri is having (I have had a much stronger appetite that I have had in months, but no real change in my leg strength yet – but the jury is still out, and I will keep you posted!)

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