Re: Sorry I haven't posted in awhile....

[Guest guest]

Hi Debbie,

I am listening!...and you do not sound mixed up or ditzy at all ... or I am just as mixed up and ditzy and understood everything you said quite clearly (which I normally do not do!). I've spent the morning on the phone with nurses, doctors, hospitals, and insurance companies much more mixed up and ditzy than us!...I actually got one insurance co. rep whose mother has sarc...she was the one person who understood exactly what I was saying!

I'm sorry you have had such a rough time...and will add you to my "daily list"...boy, it sure is getting long!

Feel better soon!,

Joan

[Guest guest]

Thanks Tracie for understanding. I think you know exactly how I am feeling right now.

Luv, Debbietiodaat@... wrote:

Debbie,I so totally understand. We fight and fight and fight to find MD's that will take us seriously- know that we WANT TO GET WELL, and help us to decipher the articles that we bring in so that the common folk we are, can understand what is going on. Instead of giving you the "pick yourself up, dust yourself off, tye your laces and get on with it" I want you to know that it's okay for you to be too tired to get up, get dressed, and rest. I want you to know that i care.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hey Debbie,

I understand exactly what you are going through! I am going through the same thing right now.

When I had my breathing test in April, I did not do well at all and I was in a flare-up and very sick. My

cardiologist/pulminary specialist had the nerve to say "you are in remission so let's not change anything right now"! And I had HAD ENOUGH! I just went off on him and he was so shocked that he ordered a chest x-ray and blood test and of course, both were bad! He even apologized and all but I decided right then and there that I needed a Doctor to treat me......not just my heart and lungs............so I FINALLY got in to see a Rhuemy last week and I am HOPING he will be the one...............he seemed very knowledgeable about Sarc and he seemed really interested in helping me, so we shall see...............anyway, he just threw a fit about the way my other Doctor was weaning me off the pred..........said it was too quick for such a large dose so he changed that and has started me on Imuran.........he could NOT believe that I had not been on any kind of med to supress my immune system..............so.............you just hang in there and do what you feel like doing. Some days I cannot get dressed without resting and some days I can...........I am really tired all the time and just going to get a drink or something is a real effort. I try to help my daughter in her office one day a week and it is just sitting there answering the phone and doing some typing, but sometimes I just cannot even do that................with this disease, you just have to forget what you used to be able to do and just do what you can do now................our lives have changed and we have to accept that and live the way we can.........what is best for US! It is hard, I know, and most people do not understand and probably never will unless they have this type of disease.........we are here for you and we DO know and understand.

Sending lots of hugs,

Darlene

[Guest guest]

Thanks . Your post as well as other replies that I have received have helped. And you were right about the hope slipping back in. I have been spending a lot of quality time with my 13 yr old son lately and he has a way of making me feel better without even trying. I have also had a few good cries too! So with the help of the group, I thank you all for helping me "hang in there" and boost my spirits . Luv, Debbieestherbsf@... wrote:

Debbie,{{{{{{{{{{{{{{{{{{{{{{Gentle Hug}}}}}}}}}}}}}}}}}}}}I wish I could be there to give you the real thing, to put my arms around you, stroke your hair and tell you that everything is going to be all right.But I'm not sure that it is or isn't, and I'm certainly not going to take away your right to rant and feel hopeless.I was right there yesterday as I was waiting forever for my pain oncologist to come into my room. I mean... the whole reason I came in again after just three weeks was because I couldn't control the pain.Luckily I had a dear girlfriend with me (instead of my mom, who is and has taught me to be etremely stoic. But yesterday I got to shed the many tears I had bottled up inside me -- all the frustration because of one more ailment piled on top of the endless pile.And your lack of hope. Well, I think I know you well eough

to know that this is something you can do. Be patient. Let the hopelessness wash over you if you need to. Have a good cry. Write to us as much as you want. But don't shut any doors or windows. I will bet you, if you try, hope will tiptoe back when you least expect it -- in the sound of a happy baby, or the smile of an elderly person when you've unexpectedly done a good deed, just out of habit, or maybe it will be just thinking of Rose and me (me especially with my distended stomach the size of an overdue pregnant woman) dressed up like fairies in purple scrube, wings, and antenae.We love you. Don't ever give up hope on us, okay kiddo? Sometimes this group is the only thing that keeps me going.Take care,