Sorry, I have not been on to update, but I have been doing the Round Robin Sick Kid Game, ugh.
Yesterday, I was off to NYC again to my hospital. The RN's in the Infusion Therapy Room (who used to give me the Remicade) took my blood and put in my IV, each on the first stick! Yay!
Then, I went to a private exam room with Peggy, the RN who runs the study. I had no allergic or IV infusion related reaction! Yay, again!
Unfortunately, I found out that I probably won't feel any effects of the new medicine until after my February IV infusion.
Prayers and positive thoughts welcome that it will begin to help at some point! It not working for me at all, is a possibility and that would, in plain english, really suck.
The waiting stinks because I am getting more sore as each day passes. My hands are swollen like two baseball mitts, my left elbow is painful, and doesn't want to work properly, and my ankles and feet are hurting more and more.
But...alas, it is the holiday season, and there is no rest for the weary. Particularly for this mom with 2 sick kids who are cutting into my shopping time!! LOL Gotta laugh, otherwise, I cry.
I have actually been doing a fair share of crying lately. Dealing with the constant aches and pains, especially now as my joints are getting worse, drains me, and I get really sensitive, and can start crying at the drop of a hat by the evening.
It isn't pretty, poor hubby and kids.
Time to go... I will try to get back here sooner than later...
Be well,
Dawn
16 comments:
(((((((((Dawn)))))))))) I am so sorry dear, that the pain is worsening right now. I know it's got to be hard to cope with that on top of sickness and the holiday season too. I am praying the new medicine will work well for you!
loving you
karyl
Praying the new meds work for you:)
Deb
Dawn,
I can't remember if I mentioned this before, but have you seen any holistic doctors?
The one thing that has always sent my lupus back into remission has been a strict raw diet and exercise program. It's not easy to follow, but it has worked for me, and I am currently feeling better again as a result of strict dieting.
Take care, you're in my prayers.
Maryanne
Dawn, I really hope the therapy starts working for you. Just take it easy and dont over do it with shopping and what not. Take care.
Ellen
Whats up Dawn,
I've commented a few times the rest i just lurk and read what i can :) First off i never really seen where u were from i want to know why u mentioned "OFF" to NYC..u dont reside there? where are u from and if u arent from there why do u ride all way to NYC dont your state have a bunch of hospitals also?
And i know what you mean about being happy that u got everything on the first stick i suffer from a disease called sickle cell anemia and i have the worst type which is SS, SC is milder then ss. Sickle cell is a blood disorder and it makes me sick alot and because of that i dont have alot of veins since i get stuck alot and it can be frustrating im so horrible that the IV TEAM argue on who is going to stick me lol. Sickle cell causes a whole lot of other problems also problems dealing with Swelling,liver,spleen i was in the hospital on my thirteenth birthday because of my spleen it was sucking up all the blood i was getting from transfusion and made it poisonous so i had to get a spleenactomy..the reason i was getting transfusion is because my TCD test came back positive which means i could have a stroke and the blood is to get oxygen to my brain to prevent it (i just got a blood transfusion today) My disease has me depressed also and crying for no reason sometimes it makes me cry because i feel useless and like im going no where and will never be nothing because im never in school.im sorry im writing so much i just wanted to let u know that your not the only one who goes through a horrible thing! There is always a catch to a new medication and if your hand and elbow is hurting that bad you shouldnt be on the computer its not that important and your only making it worse plus the fact that u can get carpal tunnel syndrome over top of it. If your medicine wont work til february u need to help your body out by RESTING.
((( gentle hugs ))) my friend, with prayers that the new meds works & works quickly -- and that your family gets well soon! love, trace
Dawn,
Even as I travel, my thoughts and prayers are with you. You are such a wonderful support for all of us, and I know that this cross you bear will not be too heavy - we and God are all here for you!
With peace and love,
Charley
http://journals.aol.com/CDittric77/Courage
Does this mean your going to get worse before you get better? Because this stuff is going to work. I have a lot of prayers riding on it.
Dianne
Big Hugs, Dawn.
I'm always keeping my fingers and toes crossed for you.
You are the bravest lady I know and yet you remain cheerful.
You were truly blessed with a great attitude.
Dianna
((Dawn)) Hang in there...if prayers could be answered there would be a simple pill that would take it all away and make you well again. Sandi
Hugs to you, Dawn, praying this works; wishing you didn't have to wait until February's infusion to know for sure. Not fair that it is the winter months you have to go through this with the cold and the pain on top of that plus the holidays plus sick children. A good cry here and there is a necessity; take it when you can.
betty
The pain pulls at you and drains your strength. Even if you had the resolve of a strong man there is no way that the tears could be stopped from appearing once in a while. I often quietly cry just from the exhaustion of refusing to let the pain be dominant. My prayers are that this treatment will work. Pennie
so sorry Dawn (((dawn)))))
feel better sweetie!
love,natalie
Dawn,
I hope the boys are feeling better and that you haven't caught it. Plus I'm praying that the new infusion works!!!
Hugs, LuAnne
Oh Dawn, so sorry to hear things are so rough. No wonder you've done a bit of crying lately.
We're all thinking of you.
Tilly x
http://journals.aol.co.uk/tillysweetchops/Adventuresofadesperatelyfathouse/
sending a prayer for you
Marti
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