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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


National Jewish Health,Denver, CO

Well I finally made it. I have had two days of testing and consultations and I have three more to go. I’ve worked with allergy and immunology and Alpha1 and Monday I start working with gastroenterology. Everyone has been so nice and helpful. I can’t do the hydrogen breath test or the fibroscan here so I will have to get them done at UCSF when I get home. I am so looking forward to getting some answers and some direction on where I go from here. Dr Serbian and Dr Wang are great. They are very good at explaining why they are running the tests they are running and explaining why they are considering the treatments depending on how my tests come back. My doctors at home are all looking forward to seeing the completed report on me once everything has been analyzed. Me too! I know it has been a long time since I contributed here. Between my issues and my fathers quadruple bypass I have had my hands full. But I want you all to know that I appreciate all the support I have received from all of you. I will try to be more communicative in the future.
#CheerMeOn #alpha1 #NationalJewishHealth