December 21, 2021 at 4:05 pm #17864Michelle GonzabaModerator
With 2021 coming to a close, it’s a good time to reflect on what you’ve gone through in the past twelve months.
What are you most proud of? What have you learned? How has your MG journey changed in the past year? What do you look forward to in 2022?
December 21, 2021 at 7:44 pm #17865Bill SuphanParticipant
Most proud of losing a lot of weight which alleviates pain and can, on most days, result in being a little more active. Among my medicines are Solaris and IVIG and I have continued that with the Solaris now going on 3.5 years. A year ago or a little more I used a walker much of the time and had a wheelchair used at the hospital where I get my Solaris but now do not even use a cane. I am 75 now and have had some improvement over the year as is noted.
December 24, 2021 at 3:40 pm #17872ChrisMParticipant
Finally weaning off of prednisone! I’m still on a large dose of mycophenolate and not fully free of symptoms but in a better place then the end of 2020. 2022 has more challenges including surgery in early jan which could knock me back physically. But trusting God leads every step of the way.
December 24, 2021 at 10:10 pm #17874Douglas ManningParticipant
As I sat in my chair today for my final treatment of 2021, I could not help but reflect on the season. Thanksgiving is past and we are coming to the end of Advent Season and what follows will bring us back to the beginning of the great promise. We celebrate our blessings before we renew once more the journey on our road to redemption. So, I begin by giving thanks for ongoing well wishes, aid, and prayers I have received from friends, family and an amazing health-care team. Today I had the blessing to sit by a window during one of my biweekly treatments on a sunny, if cold, early winter afternoon gazing for a time as the last leaves fall along with a Christmas Eve snowfall, dancing across the roof, floating to the lawns, and tree line below. In the moment I felt fortunate that unlike so many of the patients with whom I share time, my treatments are not for cancer. My fellow patients I muse are hopeful that their treatments will end and a new normal can begin. The one thing we do all share is the desire to be better, to get better. That was my greatest moment of reflection – how do we both celebrate and yet yearn at the same time? In a larger sense, how do we transition from being Thanksgiving people to becoming Advent people. I do have so much to celebrate as we passed Thanksgiving week. The infection that caused me to have a knee replacement hardware removed is gone, the infection that took away my ability to walk is gone. I am free of pain, have a new knee, and I am taking steps once more; I am blessed! And yet, I have so many steps to go, and then so much more life to live and myasthenia gravis to manage, but still I am always indebted to family, friends, community, and God. Everyday then I have the chance to celebrate blessings given and the opportunity not only to yearn for one more but to be a blessing to others. Each of us, all of us on every day are a Thanksgiving people and simultaneously Advent people. But I want to be b-e-t-t-e-r. That was my original thought, wasn’t it? For me, it has come in the form of pure joy. I am blessed! The grace bestowed upon me throughout my life makes me strong. My family beginning with the one I was born into and now the one I have created with my wife and children is ever nourishing, and extended family and dear friends fortify us. It is not all pumpkin pie though. It seems our world is gripped by near endless tumult, the planet’s history books reluctantly confirm it if we read thoughtfully. Are we bound forever to be an Advent people waiting on the world to change? I hope not. Instead, I live each day in joy knowing that every hill I climb has a splendid view waiting for me at the top.
I try to remember this everyday – grace abounds – be thankful always – and realize that I am both a Thanksgiving and Advent person who declares hopefully that I will have better health, be a better family member, friend and live in harmony with the community and this disease.
December 29, 2021 at 5:23 pm #17899ChrisMParticipant
Douglas thanks for these thoughts. We live yearning for perfection and from your notes I’m guessing we share a common faith where one day we will be in a place with no more tears. It’s a real turning point to realise the Healer is way better than the healing.
December 27, 2021 at 12:07 am #17883ANITA A. TARLTONParticipant
1. I finally weaned off prednisone!
2. Began a more sensible diet plan and have lost 20 lbs so far.
3. Discovered water aerobics, and I try to work in 4 hours a week.
January 3, 2022 at 2:03 pm #17921Jonathan AParticipant
It took me 8 long, weakening months to finally be diagnosed with acute ocular MG and generalized MG, on 3-24-2020. But I have been in remission, since 11-27-2020, after spending over 5 months in 5 hospitals in 2020. My last stay was at two hospitals in November. My toasted immune system from all my meds … could not protect me from a septic olecranon bursitis infection of my left arm, which my weekly home care nurse recognized, and sent me back packing for urgent care again for another MG crisis.
I am in a happy place now. I finally have a name to google for my incurable disease, my meds are working fine, that nasty steroid PREDNISONE was tapered and killed off on 11-27-2020, I had my third Moderna shot on Tuesday with no soreness much, and that medically induced Diabetes (from the side effects of statins and steroids that were killed off) that required nightly shots of LANTUS INSULIN was also tapered and killed on 10/25/2021.
The one thing I want to say is ….. google your disease. There are many websites such as this one … as well as WEB MD, Mayo Clinic, Univ. of Michigan, ALL STRIPES, John Hopkins, http://www.myaware.org, and eBay too. Find these sites. Get printouts of dangerous to MG patient meds, and printouts of what to tell 911 rescuers, hospital antibiotic givers, and emergency room medics. Have copies of these printouts in your medical notebook, along with your doctors and medication lists to give to someone, when your mouth, phlegm, eyes or hands are not quite themselves
Go on eBay. I got my MG MEDIC ALERT BRACELET there. You need to inform medical persons that you have MG .. and are not a drunk or having a stroke, slurring your words with a droopy left eyelid and face.
On eBay, I bought five WONDERFUL BOOKS, very cheap, worth double the price I paid, and one really BAD 40 page holistic MG recipe book. One new book, on EBAY, that just came out on 2-9-2021 by AUTHOR HOUSE by three Texas Neurologists, has 50 MG patients, in 50 chapters, telling of their search for a diagnosis and a remission for their MG. My copy is now heavily underlined, and dogeared, with many side comments of ME TOO !!!! Also unfortunately, many of these 50 MG sufferers went through years of clueless, uneducated doctors, without a diagnosis. So I did not feel so bad that it took me 8 months … but I was angry as hell, that this disease was so unknown and underdiagnosed
ALSO, find a support group in your area, or anywhere, and join them on a ZOOM meeting. After reading my 6 EBAY books and doing a dozen ZOOMs, I am in a much better place. I realized that I am in better shape than some of my MG fellow patients. I learned a lot from them, and I got answers to my questions, that most of my non-Neurologist doctors don’t have the time or knowledge to answer.
I was just on a ZOOM meeting last week, and there was restricted, sign up registration to first 70 people … then a waiting list. That night there was 75 people with MG just like me. Three pages of live people faces … male and female … just like me … 5 rows across and 5 rows down of faces. I was not alone … and I could ask questions that night. It was from a completely different time zone … but with my INSOMNIA, I was still awake. Like the MG FOUNDATION, they have a great lists of articles to download, print, and give to all the doctors, 911 crews, and anesthesia givers you meet. Check out http://www.myaware.org
REMEMBER WHAT THE SUPPORT GROUP WEBSITES say … BE YOUR OWN QUARTERBACK OF YOUR HEALTH …. BE EDUCATED. May you live long and prosper in 2022. Then you too can find your temporary Happy Place … in spite of our horrid, unknown disease.
January 3, 2022 at 2:07 pm #17881Thomas Lee ClarkParticipant
Without a doubt, I am thankful for this site. Until finding this “Blog” I spent years wrapped in my own experiences not actually knowing these fellow travelers were present with me at least in spirit. For that I am appreciative. From reading these experiences and the vaccines for covid and learning of a few of what I felt was a flashback to my MG symptoms and the fear of those things returning because of another vaccine added to the many I have had from the military. Some were easy, some I really got a severe reaction.
Because of this fear of a monster returning, I with my doctor decided to forgo the shots. As it will be My wife and I both tested positive and, on this side, we have no serious symptoms. At my present age of 76, COPD, prediabetic, and of course my previous general MG and success of thymectomy we felt the chance was worth taking. I never received a flu shot and When I came positive the doctor was ready with an IV with another fancy name, but I trusted him, and other than tired, unscathed. Thanks again to this group.
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