remission.
remission for some.
learning to live with the others.
dealing with what is lost and appreciating the time ive been given
im gonna try to update since i havent been posting lately. everything didnt just magically get better, i just got sick of talking about it. i know there are lots of people that care about me and otheres that are reading because they are far worse off then i and looking to me as hope. so here i go. ill try
i havent wrote in so long, it took be an hour to figure how to log back in.. Neurological i still struggle at things dailly. stumble on words, no short term memory and have the reflexes of a snail,. i know people look at me im with judgment and think im a bad parent but seriously i dont know until its too late to avoid incidents but it is not something i am equipped to handle anymore.
The Lyme disease and Co-infections are still holding in remission right now, and i pray every day that i dont get an infection and trigger those horrible bugs bugs up to the surface again!. i am extremely careful in natural and holistically ways, diet and rest. there is no cure for chronic Lyme disease.
Sjogrens Disease is something i live uncomfortably with that i wish more people could understand
shit i wish more doctors knew about it! Sjorgens is not just dry eyes, dry mouth, and arthritis. It effects all of my organs and joints as well.! there is no fluid in between them., there is no treatment for me because my inflammation is no longer active (i have had it too long untreated) there is no cure.
my Scleroderma has been acting up pretty bad this week. my throat hurts to even swallow my coffee, let alone food feels like razor blades! Scleroderma is another autoimmune disease where your connective tissue hardens to like stone. my esophagus is really effected. most people have outer skin issues and get sores that crack open and get infected and wont heal and need amputations but the type of Scleroderma i have is all internal and my insides are hardening. there is no treatment for Scleroderma as well as no crure. you nearly even hear about it.
i visit the Gastrologist probably the most out of all my specialists. but guts are so warn out. Gastroparesis is a difficult disease. especially with all my other stomach issues. the diet is NO EVERYTHING and before that Im already no gluten, sugar, soy,and no fiber.
i am pumped full of colace and miralax all day just trying to keep things moving. so i dont bloat out and look 8 moths preggers. in the last six months ive gained 60 lbs from nothing, its very frustration because i dont eat., no appetite and it hurts too much to eat. but being chronically ill you are either unhealthy 80 lbs or unhealthy 160 lbs. either way ive now been both with no control over it!
I just had a 2 part surgery getting a stimulater surgically implanted into my lower back that creates constant current that i can control with a remote to assist with my bladder and bowels. i was having at least one accident a day sometimes from just getting up from a chair i would have an accident in my pants.. my self esteem was at a all time low being in poopy pants!! this surgery went awesome and im fully recovered, remarkable experience, i highly recommend! i now will hold a card that keeps me from going through airport X-ray machines.
my seizure activity has been pretty low lately. our house has been quite and not to stressful.. still going to neuro eye doctor every month whos in charge of my trailing eyes and tracking. most of my seizers now are just small and no one even notices when i have them, i just kinda blank out for a little bit and my wyes may flutter.
the tumors in my brain on my Pituitary gland are now shrunken back down i will remain on that hormone medicine for 6 months to make positive and have another MRI.
I am through with my IVIG treatments after testing and there was no difference in the nerves. all the inflammation remained the same which showed that it has been inactive for too long to turn it around. even though the IVIG benefited me in other ways such as protecting be from colds, and building my strength it was too much of an expense for insurance to not have all my specialists on board to order them again.
lately ive been walking with only my cane lately and have the walker put away.
my pain is present but i am walking with a smile.
ive came a far way in the last year
im going in the right direction
cheers
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