Archive | December, 2012

Onward Through the Fog!

28 Dec

Thank you for all the kind support and prayers you have offered during this leg of the journey.  I wanted to pop in and share some thoughts about where I am now, some three months (2.5) since transplant.

I was talking to a friend recently who asked me a question I have been asked more than once, “When are you going to take over the world now that you have kicked MS to the curb?”  Hours later, I was chatting with God while going about the business of housework when I felt Him inform me that my task was not to concern myself with where I will be next year or next month.  My task is to simply do today what can be done today and do it well.

My priority for the day cannot be to tango with an unknown future, it must be my priority to do the work in front of me and nothing more.  This is a freeing piece of advice which I think bodes well for each one of us.  It is how I managed 18 years in a body which was falling apart and it is how I will mange the next 12-18 months in a body that is coming together.

Over the years, I adjusted many things to accommodate the role MS played in my day to day.  I made these adjustments without really noticing, but I have easily noticed as some of these areas improve and I have to adjust accordingly.  An example of this is as simple as how I unload the dishwasher.  Formerly, I would not take the basket containing the silverware out of the dishwasher because replacing the basket proved to be too difficult to be convenient.   Last week I was unloading the dishwasher and, only I after I popped the silverware basket back in its place with ease, did I even notice that I had taken it out.  My subconscious appears to be adjusting just as easily to positive improvements as it did to negative losses.

My walking pace and gait have continued to improve.  I no longer use the electric carts at the grocery store, or need to bring one along for outings.  This has been a huge bonus for my family and for me.  My daughter and I recently walked Target for a full hour while I sipped my Starbucks and she her smoothie – just like regular folks!  She and I both found much joy in such a simple outing.

I have also been dabbling in my former love of trying to figure out how to make certain convenience items homemade.  Back in the olden days I made my own bread, bar-b-que sauce, cinnamon rolls, household cleaners and such.  I have not been making bread or anything that grand, but I have made my own brown sugar cubes (to go in my tea) and have been making my own vinegar based cleaners again.   I’m no granola Mom, but I do like keeping ingredients simple, non-toxic, and inexpensive.  This takes energy and I am happy to have it.

Thank you for following along and for your continued prayers for my family and the good folks in Russia.  I thank God for you in my prayers and love you all as much as ever.  Mean it.

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Slugging it Out with My First World Problems

16 Dec

I spent the first two weeks upon our return with little desire to see anyone outside of family.  Feeling this way surprised me, as I anticipated being eager to get out and see people.  I saw my local hematologist mid November and was cleared for public gatherings, as my WBC count was normal.  This did not bring me the excitement I expected, but rather a feeling of anxiety.

I am discussing this because I don’t feel like I can make a health update without first addressing what this incredible, terrifying  and exhilarating adventure has done to my mind.  When I felt that pang of anxiety at being cleared to attend public gatherings, I knew that I was going to have to be honest about why I didn’t want to get out and see people.  It wasn’t because I was scared of their germs, but because I was/(am still just a little) feeling overwhelmed and depressed.

I’m not curled-up-in-bed, have-meals-brought-to-me kind of depressed.  I still wear mascara to the grocery store most days.   I expected that I would feel a little bummed when we returned and had already prepared my brain for it.  I prepared my ego for the beating of going from glowing praise from all corners of the earth to laundry, dishes, dinners they hate, and e-mails/phone calls to return.   I just didn’t prepare for the feeling to be as heavy and imposing as it has.

I could turn this into a thousand word essay about how international bone marrow transplant, isolation, stacks of C.S. Lewis and regular doses of internet applause can bring on mild depression, but I’ll let you write it.   I am attacking these blues with very easy to manage daily to-do lists and today’s list includes “update the ninja blog and stop being such a melodramatic diva, for crying out loud.”  It’s hard not to feel like a diva when a simple thing like a blog post makes you go wrist to forehead in a fainting fall.

It is easier to slug through these feeling when I know that my health is measurably improving at a steadily creeping pace.  (I should totally write segues for the local news.  Did you see what I did there?)

I’ve heard it said that symptoms of disease improve in the reverse order of appearance.  This may not be true, but it has so far been my experience.  I only started to use a cane in the last two years and the need of a cane left me while still in Russia.  This improvement in my balance has led to change in the overall way that I walk, take stairs, and stand.

I still fatigue very easily, but it is a different feeling kind of fatigue.  Heat does not bring it on and my cognitive thinking does not diminish with it.  I suspect that it is lingering chemo fatigue.

I begin physical therapy after the holidays.  I look forward to it as an opportunity to really measure my improvements.  It takes 12-18 months to see the full benefit of HSCT, and I can’t help but be very optimistic when I consider where I am today, after only two months since transplant.

I am sure I could report on more, but I am going to go ahead and post this update as is before I can over-analyze it to bits and pieces.   It continues to be a joy to share this journey to the other side of MS with you, even if we detoured for a spell.  Thank you for all the prayer, the constant love, and the abundant support.  I love you all and I mean just as much as ever.  Have a very Merry Christmas and I’ll see you all in 2013.