Re: Re: Good Greg from jessica

[Guest guest]

Greg,

thank you for your support and prayers. Just being able to talk to those who are going through the same things are enough, Weather you know or not I do think of each and everyone of the support group daily. we are living in hell hear on earth and it is not fair. please do take care of yourself Greg..

Many Blessings A.

,My dear sister you are in my prayers. It is understandable why you been so quiet. I have not experienced what you have at this time. But my empathy reaches out to you. I do understand the memory issues ny memory is like swiss cheese. If did not keep a dairy I would not know or remember what I did yesterday. I will double my prayers for you, and I will keep your issues in front of to remember to pray daily for you. you are my sister in neurosarcoidosis. Ask and I will give any support possible to you.May you blessed with pain free days and may you be blessed and strength in your hour of need.Greg aka Krumdawg>> greetings.. > As Rose has said I have been quiet, and that is true. I am in a depression. let me see were I can start, well as I said before I have been switched from Imuran to Cellcept about 8 wks ago, and as far this med, having lose of my hair, my feet and hands swelled twice there size and my feet turning purple,, it is doing nothing for my head pain,, I have been to the ER 3 times since i've been off the Imuran for dalaudid 2mg injection. the cellcept - It has been much better help with the arm and leg and back and neck pain.. but not completely gone. > My cognitive problems are getting worse,, sherif, has told my Neuro Dr Ross that I keep repeating myself,, to the point that it is 4-5 times I go over things. And I really do not know I am doing it. My short term memory has always been gone. when I was first dxd 2001 the Neuro-pyshic dr did testing and said my short term memory was done for. for the longest time with cognitive theraphy i've learned how to store it in long term memory, well as you know the brain does it.. but she has taught me how to help it along. ... W

ell I feel like it is not working anymore. for about 5 weeks i've noticed that when I chew my eye's hurt... and I go to the eye dr every six months as you know being on the Plaquneil that is a have too. and back in sept he told me the pressure in my eyes were 23, which is slightly above normal, and I was having trouble focusing on things up close.. he said right away it is time for bi-focals.. talk about feeling old. lol. so I got the glasses, and my stigamistim was slightly worse than before, I can't drive at night at all. > well I went to the eye dr 10 days ago and he said my pressure is 28 in my eyes now , and one eye went farsighted and one nearsighted. and both eyes have different precriptions.. talk about weird eyes now. So to try and give me the best correction I went to contacts again, I had to laugh he gave 2 pair of contacts and each contact had different things to them.. so he said for the next ten days to switch them around and see what is the best correction and best fit due to the stigmatism they hurt my eyes. So I went back after 10 days and he checked the pressure and it is still 28 so he did the field vision test and I failed.. I told him everything kept going black.. so he looked real good at the back of my eyes and said the good thing is your eyes look very healthy.. was a plus,, so he said to go 10 more days without contacts and try to go without my glasses when I can. And when I return on tues, he will recheck the pressure and do another field vision test and diulate my eyes again. When he started to talk about the scaring he sees on my eyes.. and Glochoma(spelling) sorry, this really scared me. With all my organs affected by the NS , except for my kidneys were the only two organs that are still healthy. now my eyes are going to Hell! Than I had my chest cat-scan w/contrast and my hands N feet N pelvis x-rays and I am still waiting to hear how they were.> ontop of that I was watching Dr G. the Medical examiner on tv and a women died suddenly at 32, and she was dxd with Lup

us 8 yrs ago.. but was told it was mild.. and when she did her exam her organs were totally ruined by the steriod and immusuppressant drugs. .. I guess it was the wrong time to see that show.. So I have been hardly been able to keep from crying all the time, I was down to .25mg of xanax in the morning for the longest time.. and now I need 1mg to keep from having contant panic attacks. I really think I am going to die. > I try to talk to Sherif, and he is a help meaning an ear to listen but since he does not have this illness it is hard for him to understand what I am going through..> so that is why I have been so quiet,, and that is not me I always try to answer questions for new people and so concern for everyone, but as I said I constantly feely like I am going to die and feel like I am crawling out of my skin so than I dope myself with the xanax.. > I hope all is well with everyone and is having a pain free day.... miss and love you all..> > Many Blessings A.>

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