2 Questions.....Steroids....Mobility....Anyone?
 

Hey there everyone!

After dealing with MS for 17 years, thought I "knew it all".....then WHAM, something new comes along. I don't know if anyone here has dealt with these two issues, but thought I'd try since you guys are the greatest when it comes to trying to help a fellow MSer!!!!

Today I was supposed to start my two day, bi-monthly steroid pulse, but the visiting nurse wasn't able to get anything started with my problem veins. Have three bandages on at present! They always have to use the butterfly (baby) needles, but when she tried to thread it, get the plastic part in, it would close up. There's a call in to my neuro, but he may not call back for awhile, but she had mentioned putting in a "pic-line" which doesn't sound too good to me. Isn't that where it stays in the chest or somewhere to make IV's easier to give? Being it's just for steroids, I'm wondering if it's worthwhile since sometimes the steroids don't seem to help much anyway at this point???? I was hoping they would "loosen" up my legs a little since they're so stiff all the time. What do you think?

The next question is for those with advanced MS who don't have anyone around to help.....or who may have a suggestion! Being my legs are so stiff, it's a BIG problem getting into bed. Sometimes I can sit on the edge, lie back as fast as possible to swing my right leg up onto the bed. With my "foot grabber" I lasso my left foot and hoist it up with the knee bent, try to hold it while I "lasso" my right again to bend it up enough to get under the blankets. But.....sometimes that doesn't work because my legs are sooooo stiff and heavy due to fluid build-up. I can't pull them up no matter how hard I try and the more I try, the stiffer they get. Of course I get upset too and that doesn't help. Have to wait until they relax which can take as long as 45 minutes. Exhausting!!

If anyone has any suggestions, I'm "all ears"!! Did I mention I HATE THIS DISEASE?!?! Grrrrrrrr.......

Think I'm feeling a tiny bit better about the loss of Susan, my little dog. I see her everywhere but I continue talking to her. Can't keep her ashes in view yet, maybe in time. Suppose the stress doesn't help the stiff leg thing any.

Hope you're having an okay day. Brrrr.....frost this morning here! Take care.........

Hi Judy
I can't help with your issues, sorry. But, I want to offer my support and wish you some relief, sooner rather then later.

Regarding your pup loss. Time really is the only comfort. I remember not being able to look and Brandi's ash box. Eventually I could put a hand on the top and felt a bit better. She had cancer and black leisons on her face, it really wasn't good for her in the end. The last night before she was to be put down, I had put a blanket around her and held her up so she could breathe better. She is definitely in a better place.

Hugs to you. :hug: :hug:

The nurses always have trouble getting the IV started on me too. I've had so much IV steroids over the past 5 years that my veins are shot. Usually they have to get a IV therapist to start the IV and they put in a heplock port for the 2 or 3 days. That might be what the nurse was talking about, that way they don't have to start a new line each day.

Last time I had an MRI, the tech had trouble starting the IV for the GAD! It took 3 sticks! So I know exactly how you feel! I am in a clinical trial so I have an MRI every month with GAD. Not fun...and then they have to draw tons of blood from me (Taffy don't look! :eek:)

One thing I might suggest is making sure you drink plenty of fluids the day before you have the IV done and warm up your arm. That seems to help. Warm veins pop out a little better and the vampires don't have to go deep sea (see) diving looking for them! LOL!

I think they have a 'mini pic' line. It's put in the arm by an RN and it can last for several weeks. It is accessed with a 'Hep lock' eachtime used and then flushed so it is open for the next time. It's been many years since my RN days so my knowledge may be a little rusty.

A "rusty" pic line? Ick....

Just kidding....but yeah, that's it!!!

Boy, Judy, I know what you mean about the bed thing. I am still able to use a bedstep that raises me up as I get in. By being just that little bit higher in landing, I'm able to raise my dead leg just in time to land.

The best solution I have come up with for myself will be a vertical pully-type system from above, where I'll be able to pull down on a cord to raise my legs up. I don't need it just yet, but the time is near and I'm getting my ducks in a row.

I have the leg-lifters too, but just getting my foot into the loop seems like an olympic event.

When I was travelling, I kind of dove into the hotel beds, but if I smash theirs, I don't care. Mine is a different story!

Thanks for all the replies and suggestions you guys! I finally remembered, it wasn't a "pic-line" but a "porta-cath" that's actually surgically implanted in the chest so it doesn't stick out, can shower, etc. Then whenever an IV is needed, it just goes in there. Sounds kind of creepy right now.....EEEEEEEEEEKKKKK!!!!! Thought about asking my neuro -- if I ever get a chance to actually talk to him -- if there is a pill version in a higher dose of the Decadron instead of the IV. Oh Yes -- now if I forget the name of the thingy, I think of porta-potty and go from there. Easy to remember that since I would like to have one with me all the time!!! lol

Cindy -- Your pulley system sounds like a good idea. It probably wouldn't go with my "decor" though! I know what you mean about trying to lasso the foot! Totally exhausted by the time everything is where it should be. Guess that's why I seem to be sleeping in my recliner lately. Wake up without the backache too.

Beth -- I'm so sorry you had to lose your best friend too. It just doesn't seem fair that they have to go so much sooner than we do. Today was a bad day with that for some reason, tears and more tears.

Cheryl -- Isn't it great having such "gentle" veins. NOT!! That's what they told me. What study are you in? I must have missed that post somewhere along the line.

All of your support is appreciated so much! I'm feeling totally alone these days, but it will get better.

Hugs all around.........

Judy
So very sorry you had another day of tears. Just cry when you feel like it. It will slow down, and then out of the blue they are back. Your special companion was well loved and as such should be mourned well.

Many hugs and a calmer day tomorrow. :hug: :hug: :hug:

getting into bed....
 

I am dx with fibromyalgia, and had cervical stenosis and some kind of lumbar stenosis,,, however I am stiff most of the time and have trouble gettingin and out of bed,.... so I usually hobble close to the bed and then do a fling/roll which gets my body and legs on the bed. Pulling the covers up is another story.:o
Losing a loved dear animal friend is devastating. I lost my Rat Terrier Curley this summer. I still cry sometimes and want her here with me. :( She knew when I was feeling my lowest and would not leave my lap. She did this with my son when he needed her also. Such love. And a clown, made me laugh or giggle constantly.:D She will always be in my heart and remembered with much love and humor, and yes still tears for her being gone. :hug:
I have other doggies who are wonderful and helpful and loving, but I had to have a small baby to hold and take care of...there was such a void in my soul...so a JRT pup came into my life. She (Jaxx) is undeniably mine, Attached to me constantly when she is not terrorizing everyone else in the house. But tons of love and devotion and she knows I need her, and of course...she has no shame. :eek: I'm not sure who is taking care of who.
:hug: Jaxx is not a replacement for Curley....I know Curley would approve and be there right beside Jaxx if she could.
Always keep them in your heart and know the love they had for you and the love you gave them was their life's work. And I hope I passed her test.
Hugs:hug: Geri

Thanks for your kind words Gerri, and Welcome! You probably noticed by my signature that I too have fibromyalgia. It started when I was on one of the MS injectables in 1995 -- all those years of unrelenting pain (as you know). Have you found anything that helps in the pain department? For me, plain old Aleve seems to work as good as anything without making me feel like a zombie.

Thank you too for your understanding in losing a pet. Yep, up and down days. I've read the first year is the hardest since everything is remembered from "last year", I'm not looking forward to the holidays coming up. Your JR sounds like he's (?) royally spoiled all ready!! They're lively little things with strong personalities. Good luck!

Beth -- Thanks again for your encouragement. Sometimes it doesn't seem real. I did look and pick up her box with the ashes this morning. Have it tucked away with some of her hair in a "baggie". I just want to hug and kiss her again so much. Do you believe that dogs go to heaven? Watching "John Edwards", sometimes he mentions he "sees" a family dog there with the people, but I don't know if I really believe that whole psychic thing. I hope he's right!!! At least it gives us hope of seeing our furbabies again, young and healed of all the illnesses they had here.

Where are you in Ohio, if you don't mind me asking? My daughter is in Maumee, outside Toledo.

Take care........:)