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I’m a expert at social distancing #CVID#MBL #alpha1

As a person home bound with no immune system I’ve become a pro at social distancing but I’m human and now more than ever we need to reach out. I may be wheelchair bound home mound but, it would be nice to get a check in some one who just wants to know I’m ok. We all have this who call to chat with the how are you but don’t really want to know they fill obligated to ask. Please everyone if your mentally or physically able reach out with a sincere heart even if it’s once a week with the only intention of asking your love one or friend how they are not to go one a hour chat about your problems and I guarantee when you least expect it you’ll get the same type call in return. I know many of us aren’t able handle long conversations I’m not but, to know one person cares and checks on you just because they care can change there whole day. So how are you today? Please drop a comment check in I care. I want everyone to be brutally honest we all sugar coat I’m the best someone asks I’m always fine but I’m not. So really how are you. If you need to vent let it go. I care how you are not the I’m doing ok I’m filling better but, think before you respond... How are you physically and mentally? I myself am having a hard day I had a infusion this am amd two more this week the three week treatments are tough. I over see my grandma with dementias care she’s right next door yet other than the camera system in place and videos and pictures I can’t lay my hands on her she’s my reasonfor getting up every day to make sure she’s took care of I miss her touch her rubbing my face holding my hand me rubbing her head. See it’s ok to not be ok sometimes. So how are you today? I’m sending all my fellow warriors big gentle hugsxxxx know your not alone and I care and want to know.... How are you honestly.. #Generalizedtorsiondystonia #POTS #hymomobilityeds #TraumaticBrainInjury #strokesurvior #CVID #Scoliosis #alpha1 #Fibromyalgia #InvisibleIllness #Wheelchairlife #Parkinsonisms #OrganFailure #survior #defetingdeppression #victornotavictim #childabusesurvivor


A Survivor Tale

I am 36 years old and tomorrow will mark thirteen years since my stroke. It was an ischemic stroke due to APS. When I woke up in the ICU I was diagnosed with Aphasia, Wernicke’s Aphasia to be exact. Speech, writing, reading and identifying simple objects were almost all gone. I always remember when I got home after released from the hospital, I couldn’t recall my middle name (it’s Christopher), missed more than 10 letters when trying to write the alphabet, and couldn’t even count 1-10. It was several weeks until I could finally process and realize the severity of what just happened. For six months in rehab I’d always remember going 2-3 days a week. It was those six months where I learned about being humble. 23 years old and I’d be working with a speech pathologist as if I was a five year old. I never completely recovered, but I appreciate every day just how much I did. Was able to complete grad school and am doing very well at work. Little more than two years ago I started to encounter another problem and that would be seizures. I’ve had many nocturnal seizures and they would be the grand-mal type. Would wake up not sure where I was, in a lot of pain and just exhausted in my entire body. Twice I actually woke up on the floor right next to my bed and had dislocated/fractured my shoulders. Months would go by where I did not a seizure and start to believe my medication was finally in tact but would have another and start all over again. It’s been three months and once again I truly believe this has finally controled. I share this story for a few reasons: Never give up. If you don’t believe in yourself, you will never recover. Positivity must prevail in life. Every single day focus on positive aspects and not always dwelling on the negative. Whatever has impacted your life, always remember that many people do not make it and be grateful to still be alive. Whatever has impacted your life, always remember that many people have to deal with the same difficulties and problems. Many others also have much worse to deal and cope with. Always believe....

#strokesurvior #Aphasia #Seizure #grandmal #Survivor #NeverGiveUp

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