All Journal Entries Journals
Sort By:  

feeling quite down lately, more and more bladder troubles

Nov 02, 2013 - 1 comments

well, after going to the MS clinic, my physiatrist and my hubby decided that facebook was just not an uplifting place for me to be lately.  There is alot of comparison going on with our children and who can get us to babysit, and how many.   Well, I can only do one, and not all the time.  , if I have my choice it would be my little Aliya because she has been around us since she was born.  The other 4, are of ages  1-8, and misbehaved, loud, rude, and destructive, and they don't want to sleep over at our house.  They like their own house. ( I am like that to though, so that isn't really a problem for me, it is a blessing ) ....

but, for instance today our son called, and said " wanna spend 15.00 per ticket to see your grand son stand on the ice with a good hockey team" ...... well DH said, :sorry but NOPE  ....... then the next comment was, ok then, can we watch the 3 kids.   DH hasn't answered that one yet.   I just cannot handle the constant babysitting, though in my life before MS, I did this for my living, but, now with the horrible infection, which sounds like maybe I will be put in hospital for IV antibiotics, I don't have the energy or get up and go.,.. Will find out on Monday what the Dr. will do.  

went to the clinic with the lab results of the 2 organism infection, and he said, well, I would hit it with Macrobid, afnd then your GP or ID Dr. can decide what to do.  Well, a few days on a antibiotic which isn't on the list at all for any type of these inections, may make it even more resistant, so, we are waiting till Monday if we can, or hospital , here I come.

Between kids, and their troubles, hubby and his, everyone wanting our babysitting services, I just can't do idt.   I feel like crap saying no, but how am I supposed to keep the peace within the family if I take just 1 who knows us and our routine, and loves her poppa and will let him change her and such, when the other ones won't !!!

I  throw up my hands......

to much going on for me, and I'm getting a little scared now....... to start the Avonex next week too, oh yeah !!!

confused and grumpy,

my bladder is giving me troubles, as well as so many other things.... I'm HATING this......

Aug 29, 2012 - 2 comments

I have a question about this, and I think maybe it is the time to ask now.  I'm so glad to have this forum to talk about things.

I too am having trouble.  I have the urgency, and have had little accidents.  Then we have the sit and wait all day for it to come, for only one drop, then you stand up, and it runs down your leg.

Then, we have the sit and wait, and then it comes, and you think you are done, but know you are not, then it is waiting again for the rest.  Then when you think you are done, and finally can stand up, it doesn\t feel like you emptied.  

Is that what you guys are feeling?  I have been feeling it for awhile, and I am so not wanting to have this, as you all don't want it either.  

(((HUGS))) to you all,

I am so depressed about something good... I don't get it

Aug 11, 2012 - 7 comments

this is a day that I should be happy about.   But, I can't seem to be.  Our daughter and son'in'law have asked us to accompany them to Disneyland on their bill.    I can't seem to be happy about it.

We cannot afford to go on a vacation, as Norm has not worked for the last year, and is fighting worker's compensation and has not yet got an answer.

I just am not ready to be supported by our daughter, though they can afford it, I just don't know what to othink about it.  She wants to go shopping on Rodeo Drive, and such, well I cannot afford to do that., and going with her, she will want to buy for me, and I am not sure of that.  

I have so many emotions going on in me right now, that I fel like I am spinning out of control.

My sister just found out that she does have cancer again, and we are just waiting to find out just how far it has gone.  I love my sister so much, and I don't want anything to happen to her, and I can't even give her a hug because she is in Wyoming and we are here in Victoria......

I jsut want to be there , but can't be , because we can't afford idt.    

Our son in law's brother is dying of cancer, and is in hospital as I type, Norm's sister is still in hospital because of a bacteria infection that she got, and we have to visit her.  She is a widow of 4 years, to a hubby that died of brain cancer.  

My hubby had something show up on her scan on his adrenal gland, and they are watching it , and will do another scan in 4 months.  I just can't even imagine what will happen if it turns out to be something.  

This all sounds so trite when I type it, but my head and heart are going in so many directions, that I can't seem to think.  

There are people dying on this forum, and I could not post this there, so please forgive me for just being a coward and doing a journal post instead.

I sometimes wish that I was not here, and could just poof, and be gone.  But, I know I cannot do that.  I just don't know what to do now..... I do see my Dr. Blashko on Monday, and will talk to him about my feelings, but, I just needed to write them down.  

I know this is a phase that we all go through, and I don't know if the Copaxone is working, and I feel that it is not, and I'm scared about that.  I tried to come off Gabapentin, and got down to 1500mgs. and I could hardly walk, and that was a scarey awakening.  So, we are notw back up to 3000mgs.  and don't know where we go from here.  

Everyone says, " oh , you look good", or "you look Fabulous"   , but inside I feel like I want to jump off a bridge.............

I can't affoard to go to California, but I can't afford to offend our daughter and son in law either...... and our son/wife will not understand how we can swing this.  It will cause some commotion in our lives, that we have worked so very hard to fix over the last 4 years.  We now get to see our grand babies on our son;s side, and I don't want to jeopardize that. ......

So, many things going on in my mind.........

just don't know what to do with it all.................

here we go again,

Apr 21, 2012 - 0 comments

I can't even begin to understand the medical system.  I am so fed up, with the way things are going, that I am almost to the point of saying to he** with them all.

I went to Vancouver because she was my 2nd opinion a few years ago, after seeing 8 different neuro's at the MS clinic in Victoria.  She dx's me, and I decided that since I was finally dx's, I would stay in Victoria because it was easier for me to get back and forth to.  

Well, over the next 2 years, we went from bad to the worst, and even people at the hospital were commenting on the lack of care.  My hubby actually reported some stuff to VHAW and got some reports filed.  Well, somehow it got back to the MS clinic at the hospital, and they treated me really badly, rudely, and actually sometimes quite angrily.  The final straw was that I could not get an appt. for 1 1/2 yrs, to my neuro after an exacerbaction at the hospital, and that they were far from kind in telling me this.  So, when we asked to speak to someone else, there was no one on the line.  We called back, later , and was told lthat
April 26 was my date, and " You HAD better show up, DO YOU UNDERSTAND, DO YOU UNDErSTAND" that is what the nurse said to me.  

Needless to say, I got very emotional, and decided dto go to Vancouver and deal with them there.   I was THRILLED with that appt.  she actually seemed to understand, said I was very week, and lost a bunch of weight, and she asked about some skin coloring, and I said it is always like that, and she said, " that's MS for ya",  I could not do alot of the tests, and it was sthen that we talked about the Copaxone, and the RRMS dx' instead of the SPMS, and she so agreed.

So, we started dthe Copaxone a week ago, and about 3 days before I started it, my tongue went numb, and I showed the nurse from SS and she said that it was a little swollen, and that was the wavy lines on the edges, ( from your teeth), but the numb tonue, talk to the Dr.  So, off we went to the GP.......... he said, it looks like MS to him, and sounds like it too, and to be safe he took a swab to make sure there was no infection.  Nope... there isn't and wasn't..... tongue still numb....

Face really numb on the left side again, which isn't unusual . and lots of sharp pains in my ribs and down my outsides of my legs.... so, we called the Relapse centre at UBC and talked to a nice lady and she said, it sounds like MS to her too, and maybe we should be the steroid thing.  I mentioned the Dr. Devonshire didn't want me on steroids again, as 3 times in the last 7 months I have been on them, ............. and she thought that was to much.

So, yesterday, we get a call from yet another nurse, and she said that they were going to do nothing, and that Dr. Devonshire wanted me to see another neuro as she was quite perplexed about my situation.  

I now feel like we are back as square one, after almost feeling like we were getting a handle on it.........

I was in the restaurant , this morning, and I burst out crying, and just could not stop, .......
I was a little embarassed, but tried to cover it up..........

My honey wants to take me on a trip, but we can't really afford to right now, and the rest of the family needs us ..

I really, and truly don't know what to do..............

Crying in the fog, yet again.............:(