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!

52 comments:

  1. Good to see you posting again, I've missed you. Wonderful news. I'm very happy for you
    Marciae

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    1. Thank you Marcia. You've always been there for me and I thank you for that.

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    2. How wonderful to have this chapter of your life behind you and another one opening up for you! Andi

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    3. Thank you Andi. I have put the tough times behind me, but seeing photos of myself then brings it back, and makes me appreciate even more what I can do today.

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  2. Terri, I am so pleased with your progress! Is there a process through which you could report the Asheville doctor? The state board or something? It seems to me almost criminal behavior if the man didn't know what he was doing he should have at least referred you. Thank goodness you took matters into your own hands.

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    1. Thank you Carole. I may check on that. It's interesting because I have spoken to others who have been/are his patients and they have all said the same thing about his lack of interest and knowledge.

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  3. Such wonderful news. You hung in; worked hard; did all the doctors asked of you and the end is finally here, and what a great ending!

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  4. Congrats. So good to know you are recovered

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  5. Dear Terri
    What wonderful news. I have followed your journey with hope in my heart and am so pleased to hear that you have been released from this terrible illness. I look forward to reading of all your adventures with the latest of Louise's patterns, you always never fail to surprise me with your fabrications.

    All the best Jacqui from New Zealand

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    1. Thank you Jaqui. Your comments and support have meant a great deal to me and I hope all is well with you.

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  6. Congratulations, Terri! It's been a long haul for you, and I am very glad to hear you are well.

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    1. Thank you Betsy! One of these days I'll get up north and see all my Massachusetts friends in person.

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  8. What wonderful news Terri!!! So pleased to hear the great report on your health. Congratulations, you hung in there and fought back! I, too have missed seeing your posts and am happy that you're back. Can't wait to watch your new sewing adventures, always inspiring for me! Hugs, Lakestitcher from Stitchers Guild

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    1. Thank you Lakestitcher. I think somebody up there wants me to keep sewing and inspiring for a while longer.

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  9. Thank you for sharing your story. I do not know you, but I am moved with emotion to read your story and to learn that you are well.

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  10. I am moved with emotion to read your story and to learn that you are well. Thank you for sharing.

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  11. I"m so glad to hear your news, Terri...it's been a long haul, and your determination and faith in your treatments have been awesome! I hope you enjoy getting back into sewing the garments we all love and admire!

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    1. Thank you Margy. I hope to be able to get out to the west coast where we used to visit regularly. I haven't been on a plane since a couple months before this all started in 2010. I couldn't have TSA pawing around at that catheter, giving me an infection and I've had to avoid crowded areas and close contact with possible sick people. That's why we drove the 9 hours to Baltimore - to avoid me getting some kind of infection.

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  12. Great to hear the good news. Looking forward to seeing what you come up with for the new pattern. Hopefully, mine will arrive next week.

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    1. Thank you Cheryl. I'm a big fan of your sewing and know you will work your magic on the new pattern like you have with all the others.

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  13. Terri, I was so happy to read this post. You look wonderful. I hope you have continued good health for a long time to come! You deserve it.

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    1. Thank you for all your kindness and support over these years Fran,

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  14. Congratulations Teri. It is nice to hear that you are doing well and have completely recovered! I hope you are making your self a lovely outfit in celebration!

    Kristen

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    1. Thank you Kristen. I've been tracing patterns this afternoon so stay tuned.

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  15. Congratulations! I am looking forward to seeing your beautiful sewing work.

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    1. Thank you Lynn. I'm working on some new things right now.

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  16. Dear Terri, your story is nothing less than amazing. Congratulations on your well-earned recovery. You do look wonderful.
    I have missed your posts, and am looking forward to even more sewing inspiration from you. I enjoy looking through you photos when I need a nudge to tweak a pattern, especially CLD. Thank you, Terri, for all you have done for the sewing community.

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    1. Thank you for the nice comments Mary Ann.

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  17. So happy for you, Terri! I've followed your fight with tears in my eyes and now your good news is making me tear up again. Hope to hear more about your sewing adventures now!

    I don't know what I would do in your situation about that incompetent doctor. But it seems that he should be reported somehow if only to spare others from suffering as you did. I've had a similar (but not quite so serious) incident with a specialist doctor who would not admit that he was wrong and put me through a year of incorrect and uncomfortable treatment. He ended up just dismissing me and I'm still regretting not doing anything about it.

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    1. You are so sweet Louisa, and thank you from the bottom of my heart! The dirty bought and paid for politicians who have a majority in the NC General Assembly have done their best to protect all varieties of incompetents from being held accountable. The force (and the money) is strong with the medical industry lobbying to keep them off the hook by making it nearly impossible to hold them accountable.

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  18. Wow, what a journey! So glad to hear the good news.
    You make such beautiful garments from Cutting Lines; I always like to see what you have made. The style truly suits you.

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    1. Thank you Linda. Look me up next time you have to travel to Asheville.

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  19. Congratulations! It is so wonderful that this is behind you at last.

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  20. I'm so thrilled for you that you've been given a clean bill of health. This has been some journey and I'm glad you've made it to the end stronger and still sewing!!!

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    1. Thank you Carolyn. Isn't it interesting that sewing and creating is such a healing activity for us. It's also a stress reliever, which is healing in itself, plus you get stylish new things to wear!

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  21. Glad to hear your progress Terri. I have an autoimmune disease, so I know how debilitating it can be. I'm so happy that you've been able to fight this thing and keep up your spirits and creativity.

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    1. Thank you Nancy for all your kindness and encouragement as I fought my battles. I hope you are having success with yours and are enjoying your new house in such a lovely and peaceful place.

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  22. Your story is both heart-breaking and empowering. You're definitely a very strong person. I wish that your journey to health continues and that you can spend every day of your life doing what you love most!

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    1. Thank you Hanna. It certainly has been a life changing experience on so many levels.

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  23. Am new to your blog but was moved by your story. I am thrilled to know of another NC sewist. So many seem on the west coast. My daughter is a dr in Asheville but about to move. Maybe we could make contact somehow. I am. Louise Cutting fan also! Just bought a few things from her at the Sewing Expo in Raleigh. I'm in Greensboro.

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    1. Thank you belle. If you'd like, just leave a comment with your e-mail address so I can get in touch with you and you'll have mine. Since I moderate all comments, I will just delete that comment and it will not appear on the blog

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  24. Terri, just want to give a you a bug hug and a big thumbs up as i have been living that story since i was 15. One day i started to cough, within a month i'd lost 20 pounds a was in bed sleeping all day.....my parents took me from doc to doc, finally we ended up with a young pulmo doc who said, "Mrs. Q i have no idea what is wrong with your daughter by i won't send you to anyone else, we're going to make her well." and he did, tho it took months.

    35 years later i've had more bouts, but i can walk and sew and have a great husband and even wrinkles! Cannot say how wonderful to see yourself aging when you weren't expected to see 16. It sounds like you have a gem of a husband and a fantastic medical team (and those Asheville neuros should be investigated at the very least).

    So hooray for us! And all those peeps who made it possible! On the selfish side, i'm quite thrilled to hear you're looking at spending some quality time with your sewing machine, i take so much inspiration from your creations. Your "Swiss cotton Fendi dress" does go seamlessly with your jacket, i thought for sure you'd made the set!

    Have a great summer and Happy Independence Day!!!! steph

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    1. Thank you Steph! You're a beautiful lady inside and out.

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  25. Hi Terri

    I am so happy to hear your good news and send my warmest best wishes for your future health.

    Ruth

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  26. You look wonderful TK! This has been a long journey and I know you are glad it has come to an end. We need a visit to catch up.

    Barbara from TN (Velma42)

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  27. Such wonderful wonderful news! Am so very happy for you - enjoy! You are a trooper and have earned every pleasure and treasure you find.

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