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Status-moving on

Aug 26, 2010 - 1 comments

  Boy, it's been a fast and crazy couple of days.  Dh got home late Tuesday night.  We talked and hugged and just lay in bed together absorbing the news of my dx.  I went over all the events and thoughts I had had that I wasn't able to share with him while he was away. All in all we were both somewhat relieved that there was finally a dx so we could start moving forward.  Did we want this dx?  Hell no!  But we couldn't linger very long in that.  Wishing it weren't true wasn't going to change a thing.

  I had started the Solu-Medrol on Tuesday morning, against a gf's advice.  She said it might effect me negatively and I should wait until my dh got home and take starting Wednesday morning.  I probably thought about that for 2 seconds before I decided that I wasn't going to live my life in fear of anything. No delaying meds, treatment, nothing out of fear of the effects.  I need to go full force here and trust.  As I heard Montel Williams say, "I have MS but MS will never have me."

  The effects from the steroids on my symptoms really didn't get noticed until Wednesday morning (about 24hours after I started them).  Left side numbness almost all gone, right side was were left was the day before, trunk area, which was always the most problematic area was greatly reduced as well.  Yippee.  This is great I thought.  Maybe I can make a complete recovery after 4 months of symptoms!

   I had a school district meeting at 8am Wednesday and thought as I was getting ready that this was my first official meeting or activity since getting the dx.  Hum.  Will it feel different?  No, it didn't.  I  actually forgot about dx during most of the meeting.  It was a normal morning all in all.  Ran to the store to pick up some fresh fruit and fish (I am loving, loving catfish at the moment) and got home to walk dogs and catch up on several days of newspaper reading.  Ah, it was so nice to do normal things without worrying anymore what was causing all my crazy symptoms.  And I am finally on the road to some sort of recovery.

   My dh and I decided not to tell our kids on Wednesday night as there were some school activites that were going on and we didn't want our family talk to compete with anything else. Tonight, Thursday it the night that we will tell them.  Our main thrust will be that NOTHING has changed from a week ago except that now we know what it is I have, we have a name for it.  We will give them permission to talk to their friends or whomever they want about the information but will request they don't post it on facebook or talk to family yet as we will be telling them this weekend.  My sister is coming in on a business layover Friday night (only the second in almost 20 yrs, God's hand is so big).  She will be present when I call my parents to break the news to them.  Having her here will help them I think proces it better, as she can at least attest to my physical well being.  I don't want to burden her but am axious to hear what she has to say about this dx as she is a bio chemist.

  We have a family get together this weekend with my dh's family to celebrate a birthday so everyone will be in town (not so common).  We thought we would break the news over the phone with them as families so when we get together as a group the news will have had time to sink in.  Not sure we will be telling my dh's 98 yr old grandmother though as she may not compeletly understand the dx and we don't want to stress her.  There are some other issues with telling other members of the family that my dh and I discussed and he will clarify to them just what they can pass on and what we would prefer they kept to within the family.

  My friends who have known that I have had some medical issues but don't know the dx will be told on Friday. Since many of them have children my children's age, I figured if I don't tell them pretty soon after I give permission for my kids to talk with their friends about it, they may get the news from their kids and not me, which I obviously don't want. Word will spread pretty quickly after that as I have some big mouth friends!

   I had several contacts with some of my closest gf's yesterday who do know my dx. They have all been so great.  Giving me references, offering contact info on family or acquaintances that have MS, offering so many wise words of wisdom and support. One friend who is dealing with her own autoimmune disease wrote to me,  "The will of God never leads where the grace of God cannot sustain."  How we chose to respond to suffering can bring us closer to God and that in itself can be a major blessing that comes from the suffering.  And I have to say that it is such a blessing that my friendships are getting stronger and closer than ever before with these women. And that the ripples in my pond are postitively effecting the ripples in their pond. They are growing closer to our Creator and are here with me seeing the bigger picture in this. They see God's hand all over this dx and the timing of it.  And fortunately, all of them are quite optimistic (as I am) that I am on the right track to recovery.  Great to have that affirmation.

  My swim yesterday wasn't at relaxing as days gone by.  I didn't get into the pool until the early evening.  With phone ringing and dogs barking, it was hard to completely relax.  Hey, I thought, there will be days like this, don't let it spoil your bliss.  So some days you just gotta do what you gotta do to take care of yourself but it won't be  perfect or pretty.  Just go with it, so I did.

  I woke this morning with no numbness in my left foot, almost nothing in my right and my right trunk almost compeltely normal feeling.  Wow!  Sleep-wise it has been a bit challenging getting to sleep but once I drift off (may take an hour or 1 1/2) I sleep pretty well.  And I am now sleeping on my right side which I haven't done in 2 months!  Told my dh.  He was happy.  Told him we were getting back into the MS 150 event here in TX as soon as we can.  Just think of the money that he could raise b/w our parents deep pockets and his companies matching fund program?  He agreed. Great. I loved being a part of that family even when MS didn't touch me personally.  It is such a wonderful activity sharing a weekend with people committed to raising money and finding a cure for MS by biking 150 miles from Houston to Austin.  Can't wait to be part of that again.
  Dh had read through the literature I gave him about MS, copaxone and my MRI results. We discussed a little and I filled him in on spinal vs brain lesions as best I could.  We may make an appt with Dr Cocky to go over any lingering questions, as he has made himself available to us for whatever we need.  Lots more to learn myself, it will all take some time.  All of this will all take some time.  Still sinking in.  I will be so relieved when our families and friends know.  My double life will be over and we can all move on.

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by twopack, Aug 26, 2010
Hi Julie.  I enjoyed reading your journal entry and can't thank you enough for sharing this piece of an important point of your life in such an open yet intimate style.  It's wonderful to hear you have such strong support from your dh and family and a extensive community network to rely on.  I'm sure you have worked hard for a long time to build the life that will now help you in your times of need.

I admire your organization and determination to continue to direct your own destiny whenever possible.  Some people worry endlessly about ugly outcomes.  It is clear you will acknowledge the possibilities and be prepared for the worst while living fully as long as that option remains.  I do hope the challenges of MS continue to raise your very best characteristics to the forefront of your wonderful spirit.  You are an inspiration to me already.

I'll be keeping you in thought over the next few days as you share your story with family and friends.  Like you, I don't shy away from letting people know I am diagnosed with MS.  Life is just easier when people can be kindly honest.  Besides, I don't have it in me to hide away or leave a helpful cane at home simply to prolong a facade.

I hope to see a lot more of you around here, even after living with MS has become the old news in your life.  Every member here is important to our individual growth and our health as a community.  You've got such a wonderful "home" team.  I look forward to hearing about your journey.  I have a feeling it will be an adventure.


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