2018 - BYE FELICIA.
It's no secret that 2018 has been a really tough year for us. I am totally ready to say "BYE FELICIA" to this year!
(I so love Robin Roberts and her reaction to Omarosa!)
As I look back over this year, however, I realize there have been quite a few things I have learned. Ultimately, the value I can pull from a rough and tumble year comes from these "life lessons."
1. A simple DNA test to trace ancestry can present some unexpected surprises. These surprises can often be quite shocking -- which was something my husband had to deal with this year. Quite a shake-up to start the year, but we've moved forward.
MG
2. Don't blow off strange symptoms, even when you think they are minor.
3. I increased my vocabulary. I learned many new words like Myasthenia Gravis, Autoimmune, Chronic, plasmapheresis, infusion, seronegative.
4. I learned several new abbreviations, such as:
**MG -- Myasthenia Gravis
**IVIG -- Intravenous Immunoglobulin
**RNS -- Repetitive Nerve Stimulation (REALLY NOT FUN)
**EMG -- Electromyography
**SFEMG -- Single Fiber Electromyography
**MuSK -- Muscle Specific Kinase (the type of MG that I have)
**NORD -- National Organization for Rare Disorders
5. I learned to appreciate doctors who listened and treated me with concern, kindness, and respect. I am so very thankful for Dr. Eric Marom, Dr. Shruti Raja, and Dr. Mark Mayson; they have been the consummate professionals as they have treated me this year.
6. I also learned to complain in writing when doctors treated me more like a circus exhibit, wouldn't answer my questions, or acted as if they were too busy to be bothered with me.
7. I learned about the Spoon Theory This has helped me understand ways to conserve my limited reserves of energy now.
8. I keep a "ready-to-go" hospital bag packed with all I need in case I need to go again. Besides pajamas and daily necessities, I have things like chapstick, a puzzle book, a coloring book and pencils, a notebook and pen. (It must be "good luck" -- ever since I've packed it, I have NOT had to make another flying trip to the hospital!)
9. An ambulance ride is very bumpy! But I'm quite thankful for the professionalism and kindness of the EMS workers who helped me this year.
10. Some new favorite things: A stainless steel straw that I carry in my purse, and a squeeze respirator -- one in the car, one in the house. Also, a Bi-Pap machine to help me breathe at night.
11. Medications can do wonderful things. They can also have some nasty side effects. You take the good with the bad, the bitter with the sweet.
12. Finding new routines can be frustrating, but ultimately will pay off with less stress. Pacing yourself is not always easy, and you sometimes overdo on a day when you feel good. Learning to "listen to your body" -- and to rest when you need to -- is mandatory. I have had to learn to schedule "rest and recovery days" to be able to get over particularly busy days.
13. It's OK to cry when you have to. A part of me is gone, and I am not sure it will ever return. While MG can go into a remission, there are no guarantees that it will stay there. Grieving what you've lost is a big part of dealing with a chronic illness.
14. The support and love of family and friends is priceless!
15. There is great value in online support groups! I've gained so much more knowledge -- plus made new friends -- by joining a few groups relative to MG.
16. Sometimes you just have to adjust your view of what life is supposed to look like. Just go with it, don't question the "Why" or "Why Not" -- the adjustment will take you and a different path, but who is to say it won't be just as beautiful as the one you'd always envisioned?
17. Saying farewell to a treasured pet is never easy. Mia will always be in our hearts, she was a special and beautiful girl who left us too soon, too suddenly.
18. A cat who chooses you can also be a great therapist. Freddie Mercury decided I could be his human. He helps me with sewing projects, listens to me when I need to talk, follows me around, snoozes by my side, makes me laugh every day.
19. Another therapeutic outlet for me has been writing, particularly this blog. Often I can present my feelings and thoughts via keyboard much easier than speaking. Sometimes just re-reading the words I've written can help me process the thoughts swirling around in my brain! I very much appreciate my readers, and the comments many of you make regarding what I have written. Your encouragement has been wonderful!
20. I never thought it could be possible, but David and I have drawn closer than ever throughout this ordeal. He has been my Rock, my voice when I could not speak, my advocate, my researcher, my record-keeper. We've been together now for 13 years (married 11) -- and it get sweeter and stronger with each passing day. I feel so fortunate and blessed that we have each other.
21. This saying:
Which of course translates in my head to something like this:
See you next year!
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