Re: Thanks for the Welcome to the Group

[Guest guest]

Krumdawg, it sounds like you came back home with the sarcoidosis -- something they are seeing alot of in those of you who served in DJ and DS. I have 2 brother-in laws that served in both -- I think Fred was in the 82nd.

One of the things that I am finding helps me with my short term memory issues is playing Scrabble online, word games and such. Somehow, it is integrating the longterm with the short term. Mahjong is also good- as it really makes you concentrate on what you are doing. and they are both fun.

I've had to develop a discipline to put my keys in the exact same place on my backpack (I use this instead of a purse - it's a hydropack and I can put my oxygen in it) so that they are accessible without having to look all over the house for them. I use a backpack harbinger (sp) clip to hook them on the outside pocket-- and it has saved me tremendously. My wrench for the oxygen is also on the same clip- so no frustration there.

For one who has always hated to write notes, shopping lists etc- making changes like this is even difficult, but to save the battle of beating myself up over not recalling what I went to the kitchen for-- has helped. I still struggle to get the appts into an appt book-- but that too can be a godsend.

My husband has resorted to putting large notes on top of the backpack, if he wants me to get something when I go out. This has helped also. He tells me initially, but this is a friendly reminder. I'm sure that others will share what they've learned to do-- and I too am hoping to hear more.

What meds do they have you on? Some of the meds add to the short term memory problems, for me, it was the nightly use of Ambien-- so I switched to Melatonin. It actually worked better, and generally I don't have the morning hangover effect from it.

Welcome to the family-- and share away-

Sincerely,

Tracie

NS Co-owner/moderator

Welcome to the Neurosarcoid group, krumdawg

I would like to say welcome and there is not such thing as a stupid question. Sorry we have to meet under this conditions but you have come to one big happy family!! we are there for each other weather to cry, laugh, or just catch up on family life.

Most of the time its because we are in such pain and just need someone who understands what we have to listen. We all have the same basic complaints that family and friends just don't seem to get it. for the most part we look fine, but inside we are falling apart. and in terriable pain.

I am married to a wonderful man and have two children one 19 yr old son and 5 year old from my husbands previous marriage. OH yeah and a wonderful cat named Mandour he is a Bengal cat..I am 41 and was dxd spring of 2001 but I was very ill for about 10 years prior and no one in my state could tell me what was wrong. I was told I had Lymphoma,I got that call at 4pm in the afternoon after a spinal tap and had to wait till the next day to get in with the dr..I thought my life was over. I was told by every Neuro dr in the state if I had seizures they could help me but they can't. My x-family dr told me I had migrains and had to just stop being a baby and grow up !!.. so they had me on high doses of steriods for 5 yrs daily until I became toxic and had to be put in the hospital to get off them asap.

When I found my Neuro-dr that I have now he did 3 spinal taps, mri's angi-gram, liver biopsy, every kind of test invastive and non-invasive until he got me dxd he said he knew I was very sick and he didn't stop until he dxd it. He is a wonderful Dr. Chief of Neuro at Hershey Medical centre in PA. He is the only one around that knows how to treat this. my wbc was 1600 for 4 yrs and no one did anything, so my own body was attacking my liver, spleen,brain, spinal cord, L-adrenal gland and my lungs, I have lessons in all of them. after 3 months of being on Imuran and plaquneil my wbc went back down to normal. well it is 3.1 now which is low but normal for me now. I have permenent short term memory loss, so i've been going through cognitive theraphy to teach my brain to store it in long term memory. and it has worked

wonders.

I have returned to college and studing to be a pathologist i take it one semester at a time, and yes its hard and i am sick often but I hold a 4.0 gpa and just won an award in oct for making the Deans list.

well enough about me,, tell me alittle about you and your family

many hugs and blessings and a pain free day

In Pa

[Guest guest]

Hey there.

The memory thing has hit me too. I was always forgetting which meds I took and when. Now I have an alarm that goes off to tell me it is med time. After I take the meds I turn the bottle over so I know I took them. I too write notes and I don't know what I would do with out a daytimer. I get so mad at myself when my sig. other tells me he already told me that and I tell him I don't remember that I actually write myself notes about anything important he tells me. If I don't think it is I just tell him thank you but I am not going to keep track of that one. Some times he is upset but he does understand and try's to help when he can. Back to the pills If I am going to be gone for the day or when I am scheduled to take a dose of meds I put them in small bags labeled when to take them, The alarm on my watch still goes off and when the bag is empty I know they are gone. Simple yes but oh what a help

Welcome to the group Krumdawg. My husband was in Desert Storm as well as Vietnam. He was with the 826th ordnance out of Madison, WI. gone over there for 10 months. He was in the Reserves at the time. We had only been Married 2 months. Oh well He came home somewhat different but Thank God Healthy. God Bless you for what you have done for our country.

Again Welcome. Jackie from WI.

Welcome to the Neurosarcoid group, krumdawg

I would like to say welcome and there is not such thing as a stupid question. Sorry we have to meet under this conditions but you have come to one big happy family!! we are there for each other weather to cry, laugh, or just catch up on family life.

Most of the time its because we are in such pain and just need someone who understands what we have to listen. We all have the same basic complaints that family and friends just don't seem to get it. for the most part we look fine, but inside we are falling apart. and in terriable pain.

I am married to a wonderful man and have two children one 19 yr old son and 5 year old from my husbands previous marriage. OH yeah and a wonderful cat named Mandour he is a Bengal cat..I am 41 and was dxd spring of 2001 but I was very ill for about 10 years prior and no one in my state could tell me what was wrong. I was told I had Lymphoma,I got that call at 4pm in the afternoon after a spinal tap and had to wait till the next day to get in with the dr..I thought my life was over. I was told by every Neuro dr in the state if I had seizures they could help me but they can't. My x-family dr told me I had migrains and had to just stop being a baby and grow up !!.. so they had me on high doses of steriods for 5 yrs daily until I became toxic and had to be put in the hospital to get off them asap.

When I found my Neuro-dr that I have now he did 3 spinal taps, mri's angi-gram, liver biopsy, every kind of test invastive and non-invasive until he got me dxd he said he knew I was very sick and he didn't stop until he dxd it. He is a wonderful Dr. Chief of Neuro at Hershey Medical centre in PA. He is the only one around that knows how to treat this. my wbc was 1600 for 4 yrs and no one did anything, so my own body was attacking my liver, spleen,brain, spinal cord, L-adrenal gland and my lungs, I have lessons in all of them. after 3 months of being on Imuran and plaquneil my wbc went back down to normal. well it is 3.1 now which is low but normal for me now. I have permenent short term memory loss, so i've been going through cognitive theraphy to teach my brain to store it in long term memory. and it has worked wonders.

I have returned to college and studing to be a pathologist i take it one semester at a time, and yes its hard and i am sick often but I hold a 4.0 gpa and just won an award in oct for making the Deans list.

well enough about me,, tell me alittle about you and your family

many hugs and blessings and a pain free day

In Pa