Hi there Still Standing
My RA also struck over night- I couldn't stand the weight of the sheets and I remember groaning with the pain and then not able to stand. It was as if gravity was pulling me down with a force that I could not escape.Methotrexate and pregnosone along with lots of other drugs came into play over the years.
Pregnosone is the only one out of the dozens that has lasted the distance.
Now I am happy to say that rituximab has been my life saver for a year.
Yes there has been some draw backs such as minor re-occurring shingles; I know now how to stop them before they appear.
I have heard that some can get a shingles vaccine before the infusion, but that is not available here. Before the infusion I am offered panadol orally and fernergan (an anti histamine) and 5 mgs. of pregnosome in a prep. drip. As I already have a daily dose of anti-histimine(Claratyne) and panadol and pregnosone, they leave out the anti-histamine and panadol, but still give me the extra prenosone.
A nurse routinely monitors my blood pressure and makes sure all is well during my 5 hour infusion. Even though I am scared, all goes well.
Rituximab is great! 2 doses, 2 times a year is all that is needed.
It takes about 3 mths. to kick fully in.
I have greater strength, and more awake. I was pleased to be able to do a tech course last year. This was possible because of my new found stamina.
As to your depression, maybe the freedom that the Rituxan gives you may help. You poor thing, not being able to dress yourself is very frustrating (I know). Have you considered any hormone replacement therapy to get you over menopause and its wackiness? I found HRT helpful and is only necessary for a couple of years. Are you having panic attacks? I have had these, horrible, horrible................
I would agree, being positive is of great benefit. I also think that meetings are more than chance. I have a firm belief in God and His presence in my life. He is my strength.
Thanks for your encouraging words,
let me know your thoughts
Anyone for a towel on a beach somewhere!
It seems all of us are dealing with not just the pain/fear & stress of these diseases, we're all dealing with side issues, one of which is depression
I'm so glad to hear from you. I didn't know you were in Canada, so there goes the Medicare idea.
I'm so sorry you are so homebound. This last year that is exactly where I have been, more or less. Due to the arthritis and the economy...we only have 1 vehicle, so my husband goes to work, and I stay home...gas just got too expensive. But, it really was okay I didn't & couldn't go anywhere anyway. Everyday, it was like another joint went bad. And, like I said, just to get out of bed & shower was a monmoth task, as you know.
Probably the hardest thing for me was that I have a sister and two brothers. All live, what I call, a charmed life. I must have been hiding behind the door when the charms were given out..haha. Anyway, none of them understand, at all. I try to tell them I don't live, I survive....big difference. My sister one time told me to quit complaining
For the past 20 years, I not only had to take care of my RA but our oldest son, at the age of 11, was diagnosed with Lupus..talk about a sneaky disease. It came out of nowhere, destroyed his kidneys & has never surfaced again. Needless to say years of dialysis and 2 transplants later, he is 35 years old & a Paramedic....talk about a fighter....he puts me to shame! Everyday he now saves lives...what a world.
Anyway, we're all still here for some reason, right?
I think the strongest thing to fight against any of our ailments is the will & positive thinking. Like the little train, I think I can, I think I can....somedays we make it up the hill, others we don't, but then the next day there we are huffing away trying again.
I do a lot of breathing exercises, visualize my self on a beach somewhere with blue water, and even repeat a mantra, a zillion times a day....I'll be fine, I'll be fine, I'll be fine. Meditate about a great place you'd like to go...it does help.
Having someone who understands and won't say "quit complaining" is the best medicine of all...so, I am always here, just to gab about the news, TV, each other's country,etc or , of course, to vent anout the raw deal we got.
Take care hopeful56 and keep in touch. LindaAnn
Hi PR Glo, Good to hear from you.
Even though I have RA, I always have and still do believe that mental health (Alzheimers) is worse than medical ones. With medical you have a ton of things to try. With the Alzheimers, there is nothing. You watch your loved one change and go into their own world. There is no pulling them back. My parents were as different as night & day with the Alzheimers. My Mom was raised Irish Catholic, so very religious. She was a sweetie of a person, but with the Alzheimers, she would get angry and WOW, could she swear...if the nuns could have heard her..... She became a non sleeper, walked 18 hrs a day, so we had to place her in a care facility where she was allowed to walk all the time. My Dad was the most gentle man, very loving. I was always his little girl. He was ALWAYS there for me, we were very close. He would never raise his voice or hand to anyone. With the Alz he became aggressive, accused me of terrible things and was hard to handle. I found an excellent care facility and so he had to go there. He died 8 yrs later, but to me the father I knew died the first year.
It is a heartbreaking thing to watch. Between my sister & our spouses, both were visited 3-4 times a week.
No two people are ever alike. Each one goes into their own kind of world. They say aggresive people get calm & calm people get aggressive. No one can ever predict.
The odd thing is that they both died in just about the same manner. One day my Mom couldn't walk, the next day she needed oxygen, the next day she was bedridden and couldn't talk or eat, the 4th day just a vegetable and the 5th day she just stopped breathing. My Dad was okay and then he couldn't get out of bed and just stared into space. The next morning he also stopped breathing.
All I could do was hold them both in my arms and say goodbye...I'm so lucky to have been with them both. I cried for myself because they were gone and smiled for them because their "clouded worlds" were over.
Bottom line is, find a place that you trust, that will love them, keep them safe and clean. Try to visit as much as possible, talk about the old days even if they don't respond. Keep familiar things in their room, even if they never look at them. Play their favorite music and hug them...A LOT & say I Love You...you never really know what they hear & understand.
Do you have a Hospice by you? They are a wonderful group to look to for advice & help.
I wish I could help more, but I'm afraid that's one disease where we're all just lost about. Please remember caretakers are more at risk than the patient. So, take care of yourself. Anything else I can do, just let me know. LindaAnn
Glad to hear my email is of some help to you.
That's the only thing we can do is keep going. Wash our face, brush our teeth and look in the mirror and say, today I'm going to do...... and then we try our best!
Do you have any groups by you that do home visits? Just to have a visitor and talk a little bit during the day would be great.
Here in Arizona, the resources for homebound people or seniors is really incredible. See if you can find anything that might be helpful.
Just remember, on a day you really can't do anything, don't beat yourself up...just keep trying.
I hope your getting this because when I get 2 messages at a time I don't see how to send my message to each persons' user name. So all I can do is click on post reply.
Take care, hopeful56, I'm pulling for you...
How is your day going? I've been thinking positive thoughts for you. I hope you got my last message which was: The sun is coming up, so up WE go! Remember hopeful56, do as much as you can, keep moving as you can and, of course, Smile along the way. You are not alone. Hang in there! Linda/stillstanding
Post Edited (Gordon22) : 11/5/2009 12:41:51 PM (GMT-7)
Have you ever given any thought of relocating to the USA, especially Arizona. If for no other reason than the heat & medical help resources....I'm originally from New Jersey, and I thought that was cold...I just don't know how you make it in that fridig weather...I'd lose my mind.
No dart throwing...please...haha. In the summer, it sometimes goes as high as 120degrees...then we're not so happy to live here we sweat like crazy & air conditioning bills are outrageous!
I hope your day gets brighter Take care Pam. Linda/stillstanding