Saturday, June 14, 2014

It's Over! A Huge Sigh of Relief

I'm one of the lucky ones.   
June 7, 2014
This is a post that has been 3 years in the making.   The news is that at my six month check-up two weeks ago, my doctor at Johns Hopkins, who told me 3 years ago today that he would make me well, pronounced me well, and said he does not expect this to return.   I am no longer on any meds and have basically been discharged.    It has taken a couple weeks for reality to sink in and I'm writing this post because it's been exactly 3 years today, June 14, that I was admitted to Johns Hopkins.   For those of you who haven't followed my journey,  here's a synopsis.  

In August 2010 I was overcome by a debilitating and bewildering neurological syndrome that was rapidly destroying the myelin shealth covering my nerves.   In late September I saw a neurologist in Asheville who not only misdiagnosed me, but paid no attention to the progression, letting me deteriorate for six more months.  When he finally prescribed a treatment late in April 2011,  I had a reaction to it, and it actually made me worse, speeding up the progression and deterioration.   When I called his office to say that I was getting worse, they ignored my calls, didn't care and said he didn't want to see me for 5 more months.   Well when you are in that situation what do you do?    It's your life, so you call in the big guns, Johns Hopkins Neurology Department, the best in the world.    Based on my criticality, they got me in within a month of our contact.   BTW Johns Hopkins said the Asheville neurologist's office didn't even send them all my records.    Those records were mainly for reference, since they do all their own tests,  and tests they did.  

By June 14, the day I was admitted to Johns Hopkins, I could not bathe myself, could not hold my fingers together to splash water on/wash my face; could not wash my own hair or hold a hair dryer to dry it.   I could not walk or stand alone and shoes fell off my feet unless they were held on by velcro straps like the Teva sandals in the photo.   I was at the clinic for the entire day of tests and they took 9 vials of blood - the Asheville neurologist never even checked my blood.   My doctor for these 3 years told me that day, "We know what's wrong with you, it's rare and we have no idea why and who this attacks, but we are going to make you well."   He also told me, "I'm going to be your doctor now and we're going to get to know one another because this will take years to overcome."   Once all the results were in, they convened a board of doctors to determine treatment, then I went back in July to be admitted to the hospital and begin treatment - 3 months of plasmapheresis plus immune suppressants.   

My doctor and I worked with Mission Hospital's Hemodialysis Center so that I was able to return to Asheville NC to have this done 3 times a week for the month of August.   I have nothing but praise for the staff and doctors who run that center.   They are the best of the best.  By the end of August 2011,  I was able to walk again and I went back to JH for a check-up.   I continued the plasmapheresis twice a week for two more months with a Hickman catheter hanging out of my chest.   In mid August I was also put on a high dose of the same powerful immune suppressant that organ transplant patients must take to keep from rejecting the donor organs.  I went back to Johns Hopkins the end of October 2011 for a check-up and to have the catheter removed.   I later learned that in everyone who gets this, it behaves differently.   Some people do not respond to treatment so it can be fatal.     

I continued to get stronger as the myelin and then the nerves slowly repaired and grew back.   By October 2012 I was strong enough and confident enough to drive to Louise Cutting's sewing retreat with Linda Lee in Florida.  Three months later, in December,  my doctor decided to begin tapering me off the powerful immune suppressant that I was taking heavy doses of, and having to get my blood checked once a month.  The 20 pages of warnings that come with that drug would scare the hell out of anybody, but I had no choice but to take it.  That took a year and a half, decreasing the dosage every six months.  I am much stronger today, although I have sensory issues and weakness in my feet from being untreated and left to deteriorate for so long.
June 26, 2011
In these photos, I am wearing one of the shirt dresses I made using Cutting Line Designs Ebb Blouse pattern (fabric from Michael's Fabrics).  In the 2011 photo I could only stand, even with a cane, for a few minutes.   

I haven't started any big sewing projects since I made view B of this A New Dimension jacket in March.   I've worn this jacket frequently this spring because it coordinates with dresses, pants and skirts.   In addition to our trip to Baltimore and then Williamsburg VA on the way home,  I attended the North Carolina DAR State Conference in Durham the first weekend in May and spent the following week in Florida.     I found a wonderful designer consignment shop in Ormond Beach Florida where we stayed, Kay's Designer Consignments, where I bought several things, including this Swiss cotton Fendi dress from a recent collection.   Who could resist the lines with that great color blocking and then the back!  The brown pockets match the brown stripes in the A New Dimension jacket perfectly.   This photo was taken last Monday morning before I left for the annual District 1 NC DAR meeting/luncheon in Brevard NC.   The fabric of the jacket is a light double face Zegna shirting and is very comfortable.   I kept it on over the dress for most of the day since it was cool inside the church.

Time to sign off for now because I just got the mail and the latest Cutting Line Designs pattern, The Director's Cut arrived.   I have this Eskandar linen coat that I have been waiting for just the right "look" to restyle it into.    Then there is the perfectly matched toffee color linen to the A new Dimension Jacket and my striped stretch linen Piazza Sempione sleeveless jacket that had just come in when I visited Michael's Fabrics in Baltimore a couple weeks ago ....   Now to get busy sewing again!