Hi friends,
I am still dealing with symptoms from this lates relapse. It occurred to me that since starting Copaxone 17 months ago I have had more relapses than I ever had before and my symptoms keep worsening. I finally got to see my neuro and she was concerned about my decline as well. She scheduled an MRI for me an depending on the results of th MRI and blood test she would like to switch me from Copaxone to Tysberi (spelling?!) I really hope that works because I am scared and frustrated the way things have gone this year.
On a better note, I went with my hubby to our first local MS support group. Really nice group of people!
Alex- I wil never comprehend the way UNC mistreats you and I hope Duke works out MUCH better!
Lu- as previously posted, I hop you
feel better real soon :)
Dennis- as Lulu said, it I obvious that you were not close to your daughter's mom so hopefully she will understand that right now you are going through a lot an need to take care of yourself and settle into a new life.
Sandy- I know how painful it is when thing are not going well for our kids. The shower scenario was just so sad:( hop things sart looking up.
I hope every one has a better, cooler week!
Hugs to all
Deb
Hi Everyone, My family left yesterday to fly back home to Chicago - grandma & a few of my aunts. It was nice seeing them all.
I'm starting to get sick again. I don't know if my immune system is lowered or what. I have never been sick so often in my life the last few months. Usually maybe a cold every couple of yrs.
Tomorrow taking our husky in for her regular eye check-up. She has genetic-related cataracts in both eyes and she's only 3 yrs old. I'm also going in to see my neuro for another monthly check-up. She's keeping close watch on me right now.
Then I'm working all week. And have to stay up in Denver overnight on Sun for early morning testing at the hospital Mon.
Sorry to those who are having a rough time right now.
Sandy, that's a tough one to help make better. Your daughter's nerves and worries must be on high alert. I am hosting a shower next weekend but doing a couples shower and more like a party so hopefully someone will turn up. When is the wedding? As for the 21 yr old, theres still time for her to turn it around. I hope she does it soon.
Dennis? you sure did pack a lot into those few sentences. Obviously you and your daugher's mom were no longer close, so please don't be pressured to be there for the services. You have legitimate reasons to say no, and try to offer support from afar. We knew you had talked about moving to OR with your bro, and you're really doing it this time? Good for you to make this change, but it sure makes me sad for Dave. He will miss you so much.
My week started off with loads of drama. My oldest daughter had her bridal shower on Sunday and nobody showed up except me and my two sisters. It was horrible to watch and I couldn't fix it. She was so down. Still is. She's so excited to have her wedding and now is worried that it will be a disaster as well.
Then yesterday was my youngest daughters 21st Bday. She wouldn't answer any of our calls to wish her a happy Bday. She's being very rude to us and we don't understand. I sacrificed so much for her. She was 1.5 lbs at birth and very sick and I did so much for her. Makes me very very sad and distressed.
I still haven't heard from neuro with VER results. It's been 2 weeks now. Anyone else have to wait that long. My appt is on Monday so she better tell me then. Ugh
Well I have a lot going on and on and on....
First off I need to call my daughter tomorrow which I am dreading. I got an email from her this afternoon telling me her mom died on Friday. I have no idea what I am going to say to her. Luckily my brother called me earlier and talked and talked and talked so that it was too late to call tonight. My brother is worse in the way of talking on the phone than any woman I have ever met.
I think my biggest concern is what if she asks me to come up to CT for the funeral? How can a say no to that without hurting my daughters feeling? I just can't make that kind of trip both financially or physically.
I am also in the process of packing up all of my stuff in order to move to OR. When I get there I will be living with my brother. Hopefully that will allow us to help each other with daily living chores since we both have gotten to that point on our own.
Dennis
tomorrow morning - teleconference follow up with my neuro, to update him and to discuss my recent MRI
Fri - second PT appt for balance and re-conditioning. first appt went great, I did all balance exercises and I was sweating by the end of it! barely moving, just all that effort required in order not to tip over. I think its really goign to help. He gave me some stretch, strength and balance tasks to do at home too.
In process of applying for CPP disability as directed by my LTD insurer. Any CPP benefits I'm eligible for will go back to Sun Life to offset my disability payment from them which is 2/3 of my pre-disability salary. If I'm eligible, it's a win for them, break even for me.
Hi Laura, I'm glad that Virginia Mason doesn't do 4 or 5 day IVSM- I'd never survive... I hope you get some sleep. (Is the treatment helping you yet?) Not sure if I will sleep or not, we'll see.
JB, I'm happy you are finally getting some relief.
Alex, I can't comprehend the way they are treating you. And now they are making you sick too. It's abominable!
Shell, I wish I had an idea of how to help. Hot flashes from any source are miserable. -Now I am going to research dexamethasone.
Tammy
Argh, Alex. When are they going to start paying attention to their patient - you know what's going on.
Shell, Primrose won't help this one. I had no problem with hot flashes and the change - these are coming from the mega-doses of dexamethasone. These 'roids are hurting me, especially my GERDs. Oh well, at least I can walk better.
JB - good luck with PT - I hope it makes the differnce.
Max - I did on three days, it seems this day 4&5 is a bit much for my system. Can you sleep? I sure can't but I know I am over the edge exhausted.
What's everyone else up to this week? It seems awful quiet these days.,
Fed up with UNC trying to get transferred to Duke's Cancer Care. I can't afford it but I can't afford to have the idiots at UNC kill me either. I am neutropenic and running a fever and the clinic only wants me to go to the ER and sit in chairs where I have more chance of getting sick. I refused.
Alex
Thee days of IVSM, and one day of neuro rehab. I cancelled my pt for this week- just not up to it.
Hey all,
1st week back to work for me since Florida. Just catching up on the house, bills, etc.
Good luck w/PT JB, was wondering how you have been making out.
Lu - sorry to read about the flare. Hope it passes soon. My Mom and others swear by the evening of primrose for those flashes ;)
Wishing you all a nice week.
-shell
I go today for my evaluation for PT, and then I start PT for the lower back surgery that I have in June. Im not pain free the Dr gave a 7 day steroid pack and I'm Gabapentin 200mg 3X a day for nerve pain, Dr said the L3 nerve was swollen on the MRI, and taking the pressure of nerve may still take some time to heal.
I'm getting relief slowly......
Looks like we have another couple of hot days, this time it will cool down at night time, because of the drought my grass hasn't needed to be cut in three weeks, which is great I can't cut the grass anyway.
Every one have a Healthy week
JB