Thanks so much Pat, Lynnwood, Kris. How did this happen to us (rhetorical)? I mean, if you made a movie it'd be like an alien abduction film or something, we all just got sick instead and it changed us. Lynnwood, I so much feel where you are coming from and my heart went out reading it. You're right about
the headbanging, sometimes I'm just too stupid or foggy to get out of it. I feel like I accept the loss of capacity, but its only at a certain level and then things will happen and I'll realize I'm not fully accepting it. Like an onion. I know it's not healthy, I try to look forward to the future and to enjoy today, at least I want to be there, I have been in the past. I agree with you Patty, I don't want to be "a sick person", but sometimes when I step out of that, I get scared because the sickness takes me down, like when I worked at my dad's wedding and this last weekend. But the weirdest part of this illness is the mental fog thing. I read the thoughts of you very bright people then look at the list of things happening, knowing that the words don't really describe all that is going on and the severity of it, and I just wonder why the brain fog too. Thank you all so much for your stories, Kris, I will send out something if I can manage to get through and read it, even if I send it to my son and he sends it out. But I find myself making so many grammatical mistakes that I would never have made, linguistic insufficiency, it's called, and is a sign of, among other things, illness. So if you want to be snooty about
brain fog communication problems, you can just tell the person you are trying to talk to that you are experiencing "linguistic insufficiency". Wow, am I a geek or what? Not exactly what you want to say on a date, unless you're going out with R2D2. It's stupid the things I remember, but I can't remember my favorite professors name. It's awful, people think I'm rude, I just can't remember their names, I'm very bad with that. Well, fortunately I don't go out much so I don't come up against alot of problems, my doggies accept me, and I appreciate what you have shared with me. I think sometimes there is this undercurrent that happens and we try to overcome things but sometimes just have trouble, or something. I don't want to build up bad feelings or feel bad or jealous of someone, I used to feel lucky for my "life of leisure" and the chance to write I need to get back to that. Patty, my psych eval for social security was by someone who graduated from my alma mater, a small college, and he started asking me about
professors and everything I couldn't remember any of it and I was so stumped and slow and I just broke down crying saying "please don't tell them I'm like this"--my professors at that college worked hard to get me into graduate school and I felt that by getting sick I had let them all down. My employers wouldn't recognize me, I had one walk right by me and not know me, my old friends wouldn't recognize me. In many ways I'm grateful because I want them to remember me the way I was, I'm no longer ashamed of being sick, but I just know that they have no time for sick people or anyone not "going somewhere" and they really weren't much as friends anyway. I agree, my illness has made me a better person, more understanding of people who are sick and elderly, especially those that keep on going. I would like to be like that, just not letting it get me down. Maybe I will have grandkids someday and I know that will be a big happy thing for me. I want to start anew too and maybe in a way we are, by talking about
this. It can only make us stronger, getting it out. Thank you so much for your stories and letting me know you, you are all such great people and I learn so much from you. You're right, its just a loss of time, like the buddhists told me, "be here now".
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments