Hi law59,
Thank you kindly for reaching out. Transportation is not really the issue here and we do have support through Aging Disability Resources Center, problem is I have no medical support to go to. My PCP said he doesn't treat LT Covid, the Endo I saw said I now have lymph nodes in my neck which hurt and gave me a Rx for a trial phase of Naltrexone which only made me feel worse and didn't help at all, and ditto for Gufanacine given to me by Internal MD at Mayo (who was terrible and could care less) and Rx made me feel worse and he refuses to call me back after months of repeated requests. I called the large LT Covid Froedtert Medical College in Milwaukee, WI and they finally called me back only to be told they could arrange for an appt with a heart specialist, etc, problem being I don't know who I need to see and she said that's pretty much the gist of the LT Covid Clinic.
I call Mount Sanai in NY and they were so very nice and extremely accommodating in the way of helping people with LT Covid and meeting with the support team, BUT it's in NY and I'm in WI and I have no way of getting there since I can't fly alone and they don't do telecon appointments. I prayed they did since I've had all the testing imaginable done in the last 3 yrs and just need to speak to them about my symptoms and get on proper protocol and medication
.
I'm saw a psychiatrist because as we all know Covid affects our central nervous system and takes anxiety/depression to the max and off the charts and she's tried several SSRI's which didn't help. Only surviving on Xanax now. Due to not being treated properly for the last 3 yrs, my mind and body are now in a PTSD state.
Per my posts, I now also have a very painful groin hernia and surgery can't be performed right now due to my state of health and extreme weight loss and only 89 lbs.
Last night I was in so much pain from LT Covid issues and hernia, I almost went to the ER, but they'll only send me home and tell me to follow up with my PCP or surgeon; I've gone down this path before with ER's. It's due to my PCP and several other specialists who wrote down my issues are anxiety/depression, even though some tests show otherwise and they don't even care to explore further and write you off - especially being older.
I don't sleep and napping makes it worse because the minute I close my eyes, my body jolts into a PTSD symptoms at this point with immediate internal trembling, shaking, feeling like I'm almost having a seizure and brain zaps, heart races.
I'm very weak, not an once of fat on me, even though I'm eating, but I'm going to try and take a shower or hot bath, but of course I fear there's the risk of fainting.
I don't know what I would do with the support of all the kind and loving people on this forum. I know I desperately need TLC and being with someone in not feeling so frightened and all alone as I wither away.
Being so strong these last few years, loving life, people and my many blessings, it's kept me hanging on, hoping for a miracle. Right now, it's so sad for me just to look out the window and the beautiful blue skies and gorgeous weather and not be able to be out there hiking, biking, walking and doing all the activities outside that I enjoyed so much that Covid robbed me of.
Sending lots of Love and thanks beyond words to everyone.
@summerof42. I am soooo sorry you have gone through so many attempts with those results. Myself and Im sure most others here have similar stories and just want to further suggest due to my experiences running medical practices and dealing with beyond frustrating arduous processes for two adult disabled children. Since Mayo Clinic did sound hopeful, most healthcare systems have patient advocates who work with social workers to help make special arrangements that your situation needs. I have found being very respectful but forthright from the first call to patient services informing them in very few words your severe health and challenges with no family/transportation/caregiver/travel companion to get there, that allows them to reach out to sources outside the normal box and at first sign of push back kindly ask what dept helps the disabled there. It will probably take several follow up calls due to the number of us now challenging abilities of healthcare systems so dont give up and pace yourself as know just typing here can really use up days energy/bring on symptoms next couple of days🙃 There are also private social workers that can be hired however I know most of us going through this have lost or limited income to afford that☹️ We will find a way to help you!🌈