Spring and Self Care

[Norm]

Actually, I look forward to cutting the grass. Due to energy limitations, I spread it out over four days.

I’ve also started watching all the buds on our trees and bushes.
<div>Whan that Aprille with his shoures soote,</div>
<div>The droghte of March hath perced to the roote,</div>
<div>And bathed every veyne in swich licóur</div>
<div>Of which vertú engendred is the flour;</div>
<div>Whan Zephirus eek with his swete breeth</div>
<div>Inspired hath in every holt and heeth</div>
<div>The tendre croppes, and the yonge sonne</div>
<div>Hath in the Ram his halfe cours y-ronne,</div>
<div>And smale foweles maken melodye, …</div>

[Amy Cessina]

I’m really looking forward to the nice weather in the northeast after the cold winter. I like to walk with my dog and will now walk much further. I also count amphibians for a local conservancy group in the spring  to monitor the environment. It’s actually lots of fun and does not need a lot of strength to stand there and count and identify  frogs and lizards that are going to their ponds to lay eggs. I also collect and refinish furniture from mid century. I work full time for a rare disease foundation too although no one there knows I have one too lol. Just had my annual physical and a 4 year follow up at neurologist with EMG testing . All normal. Even my usually low vit d was in the right range. So I’m all set for the spring and summer!! .

[Heather Kaye]

I am glad that everything is going well for you right now.The fact that you are working with a rare diseasen community ,whilst you have one yourself.The fact that you can bring personal experience to the table must be a great advantage as you have the first hand experience.How on earth though  are you managing to keep your own diagnosis to yourself though ?

Regards

[Jonathan A]

THANKS AMY  for working for a rare disease foundation.  By googling for support groups, I found two and they are continuing to be great … trying to pry my own medical records, tests, consults, and  results out so I can see what they did to me  … and how they were screwing around and were never able to diagnose my MYASTHENIA GRAVIS and OCULAR MG ever for 8 months.  Every doctor failed, but a third floor nurse at  the local DIGNITY HOSPITAL, saw my symptoms, LISTENED, and got me tested, diagnosed formally, IVIGed and medicated.

Both PICNIC HEALTH RARE DISEASES and ALLSTRIPES RARE DISEASES are continuing to find my medical records and tests,  even letting me know that I was drugged with MORPHINE and FENTANYL,  at the first BANNER Hospital, that I still don’t know the whole story of.  They sent me to a DIGNITY Hospital as a LTAC, instead of diagnosing my MG.    So learn about RARE DISEASE RESEARCH groups.  If you share your story with them to further research, maybe you too can receive information to help you as well.  THREE THUMBS UP FOR RESEARCH  !!  Thanks Amy

[Amy Cessina]

Thanks. The rare disease foundation I work for is neuromuscular rare diseases too. Funny I just can’t bring myself to say anything. Since my symptoms are mostly blurry vision which my glasses correct, and mouth issues for which I eat all soft foods . It wouldn’t be easy for them to tell. So I just don’t say. My limbs are all fine -so far -so I’m able to function fairly normal.

[Jonathan A]

To reply to Michelle’s question,  …. being currently in Arizona, I am thrilled with cool shady days.  I am formerly born and raised in Minneapolis  .. so I love the cool weather, all the shade trees, and the breezes blowing in from all those lakes, and remark …what a nice Minneapolis morning, when it happens in our blazing heat so seldom.

I have been told that people with MG have a harder time in HOT climates, and can really suffer in the summers  … more than more northern MG patients.  I forget which of the 11 meds that I am taking, that have pharmacy papers that warn me, to not be in sunlight for too long,  and cover up, as at least one of my  MG meds, can cause skin cancer.

I am on 2000 MGs of CELLCEPT daily and 180 MGS of MESTINON daily.  My doctors have finally gotten me tapered off that NASTY STEROID PREDNISONE.  It gave me INSOMNIA, heavy WEIGHT GAIN, and combined with STATINS gave me medically induced DIABETES II.   Once I was tapered off that, the doctor was able to taper me off LANTUS and LISPRO  by October 25, 2021  … so no more insulin shots, and I am under 6.2.  Once they started feeding me the steroids and statins, I was 350, 400, and “high”  … on the nurses light meters ?? and getting shot at least twice a day.

Now that I am in MG remission, I feel SAFE.  I can go back outside, grip a lawn mover handle, a edge trimmer grip, or a rose clippers.  I can kneel down and plant flowers and trim bushes  … without worrying if I can get back standing on my own.  When I was undiagnosed, I struggled to trim roses, using BOTH HANDS, as my fingers were  WEAK.  More than once, I had to crawl to a chair, try to get in it, and rest, so that my leg calves, could get me into a walking position.  So I am back to being me again, and worrying less  … but go slow and take breaks and rest.

PS to Amy  … I also collect and reupholster much older chairs and other furniture pieces.  Before I got sick and undiagnosed from MG,  I worked for local and college theatres, getting props and furniture for their period shows.  Some times if you were living in an old city, such as Tulsa or Greenville, you could pickup a good piece at the estate auctions, or the weekly auction houses, especially dining room chairs and tables cheap, as most every bidder, already owns a dining room set. I have already bought several large dining room tables and made them smaller  …..   so they become nice writing desks, or a pair of  two legged, side wall tables,  for stage sets.  If the furniture looks too perfect, the local antique sellers will always outbid you, but if it has any flaws, needs recovering, or is an “out of Fashion” piece, you can get it CHEAP….

[Amy Cessina]

I agree. I like to leave in the flaws in the wood. I cannot reupholster I don’t know how. I just clean, slightly polish and even out the wood tones. I mostly collect all wood furniture. But I have one Finnish designer mid century modern couch that is danish modern in turquoise stripe original fabric, bit wobbly too. So it needs a big makeover but really beautiful. Hoping someday to find a reupholster place  to do right by it. When I see it in my garage I tell myself you need to stay healthy because this has to get in the house someday. Funny my sons girlfriend is a teacher and she sometimes borrows props from my collection for their school play!