Re: life can really suck--but we have friends!

February 2, 2011

Sorry I left so abruptly the other day. My sister in London called and if I don't take it I have to call her back. My plan is like 12-14 cents a minute she pays like 3 pounds for the call and we've been know to talk for a few hours. Since losing my Dad 5 years ago next week and finally being diagnosed with this fun thing that brings us all together a year later (had it for at least 8 years before that) I try and talk to my sisters 2-3 times a week and my Mom at least 4 x;s a week. If I had a memory I'd try and call her daily to see how she's doing (she was diagnosed with lung cancer and had half her left lung removed last year, she stopped smoking 35 years ago) but I forget. I have the slip I just have to remember to make an appointment for a brain MRI. My memory is slipping, not the way we older folks get but I have 4-6 times a day I can't remember simple words. Like

Vertebrate and Toshiba. Words I use every day.But betwix and bethort I ramble. such fair maiden. I will try and stay on ;longer. Been having it rough. Besides the normal fun I had a tooth extracted last week and it wouldn't stop bleeding and I had to cut back quickly on the prednisone. Adding into the fact that my memory is so screwed up I forgot to take my methotrexate for the past two weeks. I have felt horrible. I felt so bad on Sunday and Monday I felt like I was dying. Something I refuse to let my self ever think of but my insides were shaking like right before my last hospitalization (double pneumonia,atelectasis, plural effusion and I was septic) fun

Again I ramble so I will just say. Parting is such sweet sorrow that I will say fair well until the 'morrow

And to catch up:

.. Happy Birthday to everyone who's Birthday's I missed

To every one who is having a bad week like I, I have been praying for you and wish you only Health and Happiness

and to those who are feeling better and/or in remission-----G-d Bless you for yourselves and for giving the rest of us hope--Stay well and don't let this thing EVER get the best of you again, for you I pray also.

Mitch

life can really suck

After fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called

every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed.

now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I talked to someone who

was able to take care of everything and said it would be delivered tomorrow, I sure hope so.

Then today after having a talk with my daughter about some things happening here, she left, out the door, light jacket and 7 degrees.

after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact,

he has now picked her up and taking her out to dinner to pick her brain. & nb

sp; He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings.

It's cold here, as everywhere I know, actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today.

I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry. Need to pull up my boot straps:) and move on.

Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

February 3, 2011

Mitch, that was fine. I assumed when you didn't return to the chat that you were still talking with your sister. You have really been slammed lately, haven't you? The memory thing is frightening. I have a friend with Huntington's disease. About 10 years ago he began to worsen cognitively. This man had two Masters degrees & had been a missionary in Thailand for 11 years. His teenage son asked him what he was thinking about the whole thing (his mother & uncle both had HD, so he knew what was coming). Marvin answered with, "Well, I always liked my brain." At the time I thought it was a strange remark, but a few years later when I began having problems with short-term memory & word retrieval, it came back to me & I understood. Fortunately, I've not experienced the devastating impact that HD has had on him (he's now in a group home because his wife could no longer care for him), so I'm grateful for the fact that I can still read, understand tv & movies, talk with loved ones, use the computer, etc. But my brain is no longer the reliable friend it used to be, and I miss that.

Ramblin' RoseModerator COLTS STILL ROCK!

To: Neurosarcoidosis From: mjcv29a@...Date: Thu, 3 Feb 2011 00:06:55 -0500Subject: Re: life can really suck--but we have friends!

Sorry I left so abruptly the other day. My sister in London called and if I don't take it I have to call her back. My plan is like 12-14 cents a minute she pays like 3 pounds for the call and we've been know to talk for a few hours. Since losing my Dad 5 years ago next week and finally being diagnosed with this fun thing that brings us all together a year later (had it for at least 8 years before that) I try and talk to my sisters 2-3 times a week and my Mom at least 4 x;s a week. If I had a memory I'd try and call her daily to see how she's doing (she was diagnosed with lung cancer and had half her left lung removed last year, she stopped smoking 35 years ago) but I forget. I have the slip I just have to remember to make an appointment for a brain MRI. My memory is slipping, not the way we older folks get but I have 4-6 times a day I can't remember simple words. Like Vertebrate and Toshiba. Words I use every day.But betwix and bethort I ramble. such fair maiden. I will try and stay on ;longer. Been having it rough. Besides the normal fun I had a tooth extracted last week and it wouldn't stop bleeding and I had to cut back quickly on the prednisone. Adding into the fact that my memory is so screwed up I forgot to take my methotrexate for the past two weeks. I have felt horrible. I felt so bad on Sunday and Monday I felt like I was dying. Something I refuse to let my self ever think of but my insides were shaking like right before my last hospitalization (double pneumonia,atelectasis, plural effusion and I was septic) fun Again I ramble so I will just say. Parting is such sweet sorrow that I will say fair well until the 'morrow

And to catch up:

.. Happy Birthday to everyone who's Birthday's I missed

To every one who is having a bad week like I, I have been praying for you and wish you only Health and Happiness

and to those who are feeling better and/or in remission-----G-d Bless you for yourselves and for giving the rest of us hope--Stay well and don't let this thing EVER get the best of you again, for you I pray also.

Mitch

life can really suckAfter fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed. now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I talked to someone who was able to take care of everything and said it would be delivered tomorrow, I sure hope so. Then today after having a talk with my daughter about some things happening here, she left, out the door, light jacket and 7 degrees. after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact, he has now picked her up and taking her out to dinner to pick her brain. & nb sp; He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings. It's cold here, as everywhere I know, actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today. I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry. Need to pull up my boot straps:) and move on. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

February 3, 2011

Mitch, I completely understand the word loss problem. We deal with that in a regular basis with . She as I am sure you do, gets so frustrated that she cant remember simple words at times. We keep trying to reinforce them here by using a version of homemade flash cards. I took index cards with pictures on one side and the word on the other and she practices. I am hoping that she will be able to transfer them to a part of her brain that will allow her to recall them better. The other problem we face however is that her speech is really bad at times as well and that makes it difficult also, Take care. Be well.MattSubject: Re: life can really suck--but we have friends!To: Neurosarcoidosis Date: Thursday, February 3, 2011, 12:06 AM

Sorry I left so abruptly the other day. My sister in London called and if I don't take it I have to call her back. My plan is like 12-14 cents a minute she pays like 3 pounds for the call and we've been know to talk for a few hours. Since losing my Dad 5 years ago next week and finally being diagnosed with this fun thing that brings us all together a year later (had it for at least 8 years before that) I try and talk to my sisters 2-3 times a week and my Mom at least 4 x;s a week. If I had a memory I'd try and call her daily to see how she's doing (she was diagnosed with lung cancer and had half her left lung removed last year, she stopped smoking 35 years ago) but I forget. I have the slip I just have to remember to make an appointment for a brain MRI. My memory is slipping, not the way we

older folks get but I have 4-6 times a day I can't remember simple words. Like