A caregivers diary

I went with my husband to the neurologist this week for his six month check up.  He did the usual eye test.  Made him look up at the ceiling for two minutes  Those are the longest twominutes I ever experience but I somehow felt confident that all would be well.  No symptoms again and so the doctor said to lessen the dose of the Cellcept.  It was hard for him to decide w...

I went on an mg walk this weekend sponsored by the MG foundation.  I was amazed how many people showed up. I've gone from knowing one person that has it (my husband) to meeting one other personlast year and now at this walk.... at least five others.  It's so good to meet others because with this disease you feel so alone though this website helps, it is good to meet people fac...

Well, six months ago B's symptoms were so slight (drooping eye) that the doc halved his CellCept.  Now his appointment a few ago showed NO SYMPTOMS!  So he halved it again, though moregradually.  He is to take three for three months then two for the next three months.  Such good news!  Thank God and thank you for your prayers.

Of course, we are both not as ene...

OK, my husband has a stomach ache.  I think he had one a month ago too, and so I am kind of hoping he can reduce the Cellcept.  That's him.

But now, I am worried about myself.  I saw a hematologist two weeks ago and she is giving me blood tests and I have to have a bone marrow biopsy.  

We had a guest speaker at the church a couple of weeks ago.  He gave a sermon on a text about lepers and got on the subject of health care etc.  He talked about himself briefly and mentionedsome medications he took, for....Myasthenia Gravis.  My husband and I practically jumped out of our seats!  I couldn't believe it.  This is the first person either of us has met...

I guess things are stable and that's good.  I had some back pain/headaches myself but I think it was I was so worried about my husband and coming to terms with this disease and its life changingstuff.   So part psychological.  Anyway that is pretty much over.  

Things continue to haunt me.  I went to church today and I hadn't been in a long long time. ...

A poet friend of mine wrote about hiking.  She is 70 and on one of the hikes she had to cross several log bridges over creeks and ravines.  Sometimes they were narrow without rails and shewas scared.  Each bridge seemed to get more narrow and over a deeper ravine.  In the poem she said after the third one in the middle of it, she sort of relaxed.  In the end she said th...

I haven't been writing because my husband has been doing so good.  Went to the neuro last week and he was kind of amazed because he just didn't know how to explain it.  He said thecellcept works fast, but this was beyond fast.  He gave him the two minute eye test.  He had to look up at the ceiling with his eyes for two minutes.  Those were the longest two minute...

This cool weather we've been having is wonderful.  So we went on a two day trip and all things went well, except at night when he just sort of fell face forward unto the bed with his knees onthe ground!  He said he was overly tired and I thought wow.  That looked strange....

We took a 12 day trip which included a long plane ride and a lot of touring and a conference.  I was amazed at how well my husband did.  Is it the Cellcept?  Is it a remission?  Was he just jazzed at being away from home and seeing new things?  He did say at the end of the trip maybe it was too long.  I said, what do you mean?  He said he got bored!  I wa...

I am learning to do things alone.  I used to feel bad, you know, leave the husband at home and go off and do my thing.  But now I am thinking it is good because I am doing things and he isdoing his thing (less tiring) and when we do things together, it will be more appreciated.  The only problem is that I seem to be kind of unfocused.  I think it is out of worry and not know...

B was very sick, throwing up.  He pushed away the plate of food after taking a few bites.  He's lost a lot of weight.  My friend writes the word in an email "dccline."  I prefer the word valley.  Because as soon as he quit the IMURAN he got his appetite back.  And doesn't throw up.  But I know there will side effects with the next drug...cell...

I think B's symptoms are bad now.  Yet, its a roller coaster.  Three days ago he was just so tired he practically slept all day.  Then the next day (two days ago) he went to the gym for an hour on the machines and then stayed up until eleven to watch a tv show....(he usually is an early sleeper) and then yesterday, sleep all afternoon and early sleep.  Things were more e...

The doctors office called.  I saw it on the caller ID.  My heart was going wild because I knew this was the results of the CAT scan to see if B has a thymus gland tumor.  He associatestumors with cancer and even if it isn't he is scared of an operation.  I brought him the phone and said, it's the doctors office.  And he said, first thing, "Is this bad news?...

I get worried about B taking the Imuran.  The risk of infections.  When I was younger my father got leukemia.  I was constantly worried I would get a cold and give it to him.  Andthen he would get pneumonia and then he wouldn't be able to fight it off and die.  I hated living my life like that.  That I would be a murderer.  Of course it's not realistic...

We are still awaiting the CAT scan results.  It's been a couple of weeks and I tried to get my husband to call but he won't do it.  He's the one who will get something importantin the mail and not open for weeks.  If I was a braver person I would insist.  But I am scared too....

My friend tells me how she can't even get her mail.  She has it delive...

Yesterday in the waiting room I sat across from two women, one in a wheelchair and one much younger.  The younger woman was talking very loud to the wheelchair woman and talking kind of like shewas a child.  I know she was working on that conversation and it was difficult.  I was just thinking about one's like that I'd had with my mom in her later years.  I am not th...

Well last week the doc put B on Imuran.  Of course, he had to read the  list of possible side effects.  B read up and liked it because it didn't have as many side effects as the prednisone.  Especially the depression.  He couldn't deal with that.  I have to admit the personality changes idea scared me.  And the other ones as well.  However, I thou...

I was painting today and all of a sudden I realized I was angry at a family member because of what she said.  A couple a weeks ago she called about B and his relapse of MG and said that his diseasehas a "poor prognosis" at least that is what they taught them in medical school.

well, she went to medical school for two years in the fifties and she flunked out.  Then she...

The visit went well.  Six weeks since B's second appointment, one year six weeks since his first.  Or thereabouts.  Someday I will lost track of this I am sure.  

B was very nervous going to the appointment.  His blood pressue shot up.  He is doing well though, all symptoms of head dropping gone and mestinon working, no side effects.  Tired in t...

Since B got MG I have kept friends up to date about whats going on and yesterday a friend seemed to say that I sounded negative and that by being positive, people would never get sick.  

MaybeI shouldn't have told her things.  I was telling another friend my deepest fears and deepest hopes (complete remission) and she said matter of factly, "It will probably be somewhere i...

B has been doing better.  He seems more like his old self.  Yesterday we got into this argument and I thought to myself, this is the first one we've had since his symptoms came back inearly Feb.  I know I've yelled at him, about taking pills, about slowing down, about not doing this doing that etc.  But maybe he just never yelled back.  (not like him) and yester...

Getting lost in this website I accidently left the group, and I didn't know what I was doing.  I was thinking I was just logging off.  But there you have it.  I feel like I am justemotionally not myself.  I am normally pretty scatterbrained but I think it's worse now.  Anyway, I'd better get to work.  I am writing a book and it's very hard to concen...

It's really spring and I should be happy, but I'm not.  I'm afraid.  I just don't know if I can handle this.  I don't have children and though I have friends I don't want to burden them.  At times I just want everything to go back to normal.  What is normal?  I can't just give up my entire life and obsess about B and worry all the time.&...

I haven't written in my diary for a while because I was down with a migraine.  I get these less often, but I do get them.  When I get them I can't do anything, much.  I thinkI get tired and the migraine gives me a chance to rest.  

B has his moments I must say.  A few days ago he was telling me he was going to "beat this disease" through exercise...

Yesterday, was a lovely day, sun was out and a little coolish but lovely and the weatherman predicted that this long spell of sunny weather was going to end and that tomorrow would be rainy.  So whenB suggested he needed a workout I said why not go birdwatching?  Naturally, I was a little worried, out on a trail far from civilization and no where to rest...well, I did pick a place wit...

My husband is one of those people that sets goals and then does them.  My friend, who is a nurse says women are better at listening to their bodies.  He was so tired yesterday when he gothome he went to bed at five pm.  He slept until seven thirty this morning.  I've had days like that myself.  But he never seem to have them until the MG set in.  

It'...

I was worried about Friday all week.  I knew B had two appointments and one late afternoon.  It was going to be a long day and he tires around 2 pm so what would be be like at 5 pm?  Sometimes I think I worry too much.  I come from a family that has a black belt in worrying.  I am a tenth degree.

I just have a very wild imagination.  But B seem to do OK. ...

Leah mentioned I was in a valley.  So yesterday I was prepared for more of the same.  But it turned out well.  Maybe B is learning to pace himself, and maybe I am learning not to rushhim.  We had some chores to do and went to two stores that are exhausting even for me.  The big box stores.  Also just finding things can be a challenge.  But both stores had love...

Today, I went with B to the dentist because I know there are issues there and I wanted to make sure the dentist knew.  He told the dentist and so that hurdle is over.  It was a long day becausewe had to go to a memorial service for someone in the late afternoon.  Watching him in the morning-- with his mestinon I almost feel like he's the same old B.  But in the afternoon it...

B said he was better yesterday and did not want me to call the neuro.  Every morning he is better.  So I went to Yoga and felt caught up in that and getting away from my obession with MG.  I have a very sore knee, but I did it anyway.   Around 2 pm though his energy was going and his head was falling and I got mad at the grocery story because the line was slow and I felt lik...

I am concerned about the dizzy spell my husband had this weekend.  I justify it by doing this doing that.  But my friends said call the neurologist.  Everything was closed yesterday at the clinic so that didn't work.  So he said he was going to take the car out and do some chores.  I was thinking, I should go with him.  But I was really tired and my necked ache...

I knew it was coming.  A visit from old friends of B's that were coming from 3,000 miles to visit and how B had wanted them to come for years, ever since we moved here in fact about twentyyears ago.  I knew that his second reoccurance of MG was a serious thing.  The doctor laid it out on the table.  No more were we in the hoping for remission hoping it might never come b...