Holy Frijoles! | Arthritis Information

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What a differance a 2 hour infusion makes. So... maybe it was not the infusion itself per se. Probably more to do with the solu medrol they gave me before my infusion. Yeah... seems to be the norm now for me to get a good dose of solu medrol before my infusion. I guess it is written in my file to give me benedryl & solumedrol along with the Remicade. Lucky me!

 
It feels SOO GOOD to be able to lay any way I want to lay and not just the way my body will allow me to lay. I slept for 5 hours straight, hubby woke me up to give me my meds at 1am.
 
I have not even took a pain med today, except hubby gave me 1 Ultram tonight. He is so use to giving me them.
 
I can feel bones again! WOOHOO! I can bend my knees and I walk better and my lower back does not spasm because I am not all hunched forward because of inflammation on my lower spine. I can feel the bones in my lower spine again! No more pain running up & down my legs.
 
Oh and I do not hear the fluid "swishing" sound in my neck when I move my head. and my right hip/thigh I have much more movement in it. It is kinda sore, but I can raise my leg up to take my sock off now.
 
It is just weird.
 
It took her 4 sticks this time. We have decided that she might be going thru one side and out the other. That my veins are just not very thick and she is just jabbing the needle straight thru the vein. So... next time she is going to try something different.
 
I weigh 168, I am down from 176 from a few weeks ago when I was sick.
 
My BP was really low. It was 102/67 in one arm and in the other arm 100/65. My Pulse was 95. My temp was 97.6.
 
That morning when I woke up to see daughter off to school, I had woke up with a headach and I went back to sleep after daughter left, and when I woke up it was still there. I ate lunch and it was still there. It was even still there after I left to go home. But it is gone now. I am guessing it was from my BP being low.
 
So... now I should be good to go for another month! WOohoo!
 
I also got my infusions moved to every 5 weeks. Which I am hoping will be cool!
 
Just wanted to let ya'll know I am doing good now. I am just so happy to be doing so well again. It was really starting to wear on me again. It was to the point that I was thinking that dying was not a bad option. My fingers did not work, I was in pain sitting or laying, I could not even walk 5 feet to the bathroom without taking a break or it took me over 3 mins to get to the bathroom, and I was just in PAIN & could not move.
 
I can use my fingers again, so bye-bye long, pretty nails LOL!
 
I feel better and my mind feels much better. And it is even suppose to rain tomorrow.
 
I kept hearing people talk about how they would like for it to rain and FIL said he wanted it to rain to help fill up his pond. I was like what is up with all you people wanting it to rain!? When it rains it causes me more pain and problems! FIL said he prayed for rain! I should have told him my prayer for no rain canclled out his prayer for rain.
 
But now, talk about rain, and I will not even care
 
So... bring on the RAIN, but please not the pain!WOW! Great to hear you are feeling so well! ENJOY!!!!!!!! glad to hear it....the headache was more likely ue to the remicade..its one of the side effects.  Normal blood pressure which is what you had does not cause headachesWooHoo! ! ! !  Joonie so glad you are feeling tip top. I am so glad for you.  Enjoy it. Hooray!  I am so happy to hear your good news!
CathyMarie

Joonie wow so glad for you. Gives me some hope I am starting remicade next month after 2 yrs on Orencia that stopped working months months ago and Dr. wouldn't listen till I get in such a flare he had to. Really happy for you. It feels so good when your not in pain. Laura

dear joonie
i am glad you are getting alot of relief.  i felt the storm last night and i believe we have more coming tonight.   i am so happy for you.  enjoy the normal-ness.
Good on you. Get out there and enjoy your reprieve and aim for remission!

Best wishes, Shug
Hooray! I hope for you that your doctors can get you to a point where you feel this good ALL the timeya-HOO! Jooonie!!!
 
so glad to read this.... keep it up....... and enjoy!!!
Well hoop de do Joonie!  You certainly deserve a reprieve from all of the pain.  This is wonderful! I am Wicked Happy for you and the family.
This is wonderful news!! I hope it lasts forever for ya!Thanks everyone!
 
It probably would not have gotten this bad if I did not have to reschedule my Remicade appt, from when I was sick with the sinus infection & ear infection. I was actually 3 weeks past my original appt, and I am always flaring 2-3 weeks before my regular infusion time.
 
No, the headache was the morning of the infusion. It was just on the right side of my head and face. I told the Remicade nurse about it, she said it just sounded like a tension headache.
 
I saw my mommy when we dropped son off for her to watch while I went for my infusion. Then I saw her when we came back. She said I was walking and moving much better than the 5 hours before when she saw me. I told her it was from the IV steriods they gave me.
 
I am just happy I will be able to use my hands again! Now I can clean up my work area and work on another card. I have not made a card since end January. I needed my fingers and they were out of commission
 
At least now my hubby will have a break from his "butlering" duties. He told me the other night that he felt like he was my butler. So... I just told him sorry, and not to worry about helping me if it bothers him that bad. I can get my own drinks from full containers and I can open my child proof meds bottles myself....if not oh well. He said yeah right.
 
Very good news, Joonie!Yah it is! It has been raining all day outside and I am not in horrible pain, no need for pain meds and body parts are not on the swell! WOOHOO!!Zippety Do Dah, Zippety Aay, My oh My What a Wonderful Day!!!!   Joonie, I'm so happy for you! You have been through so much for such a long time.
Enjoy life to the fullest, Sweetie!
 
Hugs, Nini
I am so happy for you.  Enjoy yourself.......Hi Joonie, this is the best news.  Hopefully, you can get your next infusion on time.  I'm really happy to hear that you're feeling so much better.  It's been a long time and I know it's so frustrating.  Have fun.  LindyWell, I have decided that I am going to try to do more about my flares, instead of just hoping they will get better on their own. Mine do not see to get better on their own, but get worse... kinda like a rolling snowball... they get bigger and bigger and then... well you know the outcome.
 
I am guessing when I start to swell in 2 or more joints I am going to call my RD for a pred flare taper or medrol pak if it will a couple of weeks away from my infusion time.
 
I just do not want to take more pred. I want to finally get off of it. I am down to 9mg and holding. Wonder when I get to go down to 8mg.
 
I am kinda scared of the whole 5 weeks in-between infusions.
 
I had the TIA when I got moved to every 6 weeks between infusions. What if the frequency was the cause for me to have the TIA?
 
I am also considering taking MTX instead of Imuran. But I am thinking that getting cold and then hot after taking a dose is not a very good side effect. I think I can take the increased pain part that I experienced when I took it one time before. It made me hurt in joints that were not hurting before starting MTX and after I stopped taking it, those joints did not hurt again.
 
I just do not feel the Imuran is working, but then again I am not really sure what the Imuran is suppose to do for me.
 
I just need something to help with inflammation. That is my main problem, chronic inflammation.
 
I just do not know what to do anymore. I keep going to doctors and I keep getting more DXs and more meds and more problems crop up.
 
I am just hoping one day I will wake up with a plan and keep on with my plan. I have to start getting a lot of things in order within this year and half of the next coming year.
 
I need to find out just what it is "I want to be when I grow up". I cannot be a disabled, bum, that sleeps her days away for the rest of my life. But then again I will be considered old this year.
 
I just have a lot to think about, and I have a lot I have to decide if pain is worth it all.

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