Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Can't seem to get a break

Sunshinehope
Sunshinehope
Can't seem to get a break and getting sooo.... discouraged.

My RA wasn't too bad, with a few minor things to deal with, until about 2 yrs. ago. That is when I had both knees replaced.
In Feb. I had torn rotator cuff repaired and Dr. cleaned out a lot of RA.
2 months ago Vectra DA test shows RA activity is still high.
Ortho surgeon says the other shoulder probably need to be done too but won't touch it until RA is under control.
Port quit working and I'm having it replaced next week. Have been off meds. for that.
Now, today, I went to the neurosurgeon and need to have a cervical fusion done next month. So, need to stay off meds. for that too. Also found out I have a lump behind my knee and need to get it checked out this wk.

I will never get my RA under control staying off my meds. I feel like my life is not mine anymore. Thought I was coping pretty well until recently. I am so tired of this vicious circle. Any suggestions on coping?

Sorry for the rant, but needed to talk to someone. If I tell others I know they just say "You need another surgery?" and look at me like I'm a hypochondriac. It's hard to have friends who understand what you are going through. I am so thankful for this site.
deleted_user
deleted_user
I feel......EXACTLY the way you do right now.

I'm having a biopsy next Monday for my uterus b/c of a "flunked" ultrasound (the day before my hip replacement surgery) - and it's just one more thing in a long line of other problems I've been having.

I don't want to talk to friends about any of this either b/c it seems there is ALWAYS something wrong with me, I mean ALWAYS. And I don't want to be "that friend"....

Anyway - I don't have coping tips as I'm barely hanging on myself, but wanted to offer you a big hug of understanding. I do understand what you are feeling, 100%

BUT - We are strong, Sunshinehope - and we WILL get through this.

Hugs to you.....
Sunshinehope
Sunshinehope
ScarlettRA - Thank you so much for the Hug and the understanding.

I'm sorry you are going through such a rough time too. I hope everything goes well for you on Monday and you can still have your surgery. You will be in my thoughts.

You are right. We are strong and we will get through this. We always do find a way because we have to.

Hugs back to you....
trishcorsi
trishcorsi
Totally get what both of you are saying. I don't want to be that person that everyone is afraid to ask: how's everything going! In general I don't really let anyone know how it's going, which is why I love our group. There are days that I feel like I'm losing it and I can come here, get it off my chest and get on wwith my life. Gotta always remember to always say thanks. Trish
deleted_user
deleted_user
sunshinehope..coping can be hard when you are in a flare ...this is a tough disease ...when i am having a few good days and feel like the old me ..i want to do and get so much done , then wham ..when it comes back it hits like baseball bat to the head ..and its such a let down ..im very sorry for your surgery in the future and the feeling you are having with coping ..hoping for you that better days are coming ..hang in there .
sammyo1
sammyo1
Wow, seems I'm saying that a lot here.
Your a prime example on how RA can turn down a destructive path.
That's rough. Hopefully you get all these " repairs" done & over with & gain some control.
Here's to better days ahead.
Sammy
Sunshinehope
Sunshinehope
Thanks to all the understanding and compassion here. This is the best place to share our problems and our experiences. We all have information to share with each other and to to encourage each other.

I was just overwhelmed with the thought of another surgery and more time off my meds. I have to stay off of them longer than any other time. I already know how I will feel and just needed to express myself to those who care.

Again thanks to all. Hope everyone has a pain free day.
me2012
me2012
Wow, When I think of all the things I complain about, I feel ashamed. I am so sorry for all the pain, frustration, and isolation you are all going through! I wish I could wave a magic wand and make everyone better. Just know that you are all in my thoughts and prayers. I do hope that you find relief, and hopefully a cure for all of us down the road.
Sunshinehope
Sunshinehope
51percent - I'm sorry for all you are going through. I hope the antibiotics help you soon. It's really tough getting old and having RA. I hope you have a good day today.
I would love to talk to you about what to expect after my cervical fusion.

This group is so wonderful. Thanks everybody for your replies. Hope you all have a good day today.
tammydee
tammydee
I sure do understand your discouragement. I have had a pretty tough year. Last year I was given an epidural injection. It was one of the ones tainted with a fungal disease. Yep, right into my epidural sac. I was hospitalized 3 times. I died on Oct. 16th 2012. I was so sick. It has taken nearly a year to heal. Then my 33 yr old daughter died. Triggered a major RAFlare. I see all the problems people are dealing with. I feel the emotional, physical and mental pain. It seems like we are all suffering in one way or another. My best coping tool is just take it one day at a time. For me, it got down to just tasking it 1 minute at a time or just 1 hour at a time. Keep moving forward one step at a time. Don't stop and don't give up. Just keep looking forward and stay focused on all the good things life has to offer you. We may feel burdened and depressed at times but there is always something good in life that keeps us moving forward.
deleted_user
deleted_user
dont stop and dont give up ...luv how you worded that ..i wish i could give you a big hug ..so sorry for all you have been threw ..very sorry...
thinking about ..stay strong ...
Tami
Christine26
Christine26
Wow Sunshine hope, just when we think we have it bad we hear someone else has sit 10 times worse. I am so sorry. You are going through so much!! You deserve a day of pampering, massage, nails done, or something. An afternoon out with the girls if you feel up to it... Here's sending you some very special gentle hugs. What number is the cervical fusion giving you a problem at? Feel better real soon.
Sunshinehope
Sunshinehope
Tammydee - You have had a tough year. I'm so sorry. You are right about suffering in one way or another. I do take it one day at a time but some days are harder to deal with when everything seems to hit you all at once.
That is where sharing here with my friend comes in. You all help me to put things in respective. Thank you.

Tamiangus - Thanks for the encouragement.

Christine26 - I just went for a massage yesterday and it was sooo... nice. I was able to forget all the pain and my worries for a short time. It is nice to pamper oneself at times.
My surgery will be the first part of next month. The fusion will be at the C5 - C7. Looking forward to the relief but scared at the same time.
You have a knee replacement coming up too. Is that next month? I hope all goes well for you. I will be thinking of you .
Christine26
Christine26
So Sorry Sunshinehope and you have such a wonderful avitar name, so sorry to hear things are rough for you right now. I think we all get to that point when we don't feel well and our RA is not behaving rightly with our bodies. I am sending good thoughts and well wishes your way that you will be on the mend soon. I find being around my friends helps me to cope better with RA, certainly this group, going out to dinner, again with friends, traveling when I can, going to plays, joining classes(last spring I was in a line dancing class). So much fun. I enjoy crocheting, watching a good movie. These things also help distract me from thinking about RA a bit. I agree with Scarlett, we are strong and we ill get through this. Hang in there.
skyegirl52
skyegirl52
You know, I was just going to write about this Very thing....getting sick constantly...friends don't want to hear about it & don't understand Cuz we don't LOOK sick....ugh! It's not nice to say I'm glad I'm not alone in this but thankfully there are others who truly understand!
One question... does it take everyone else forever to get over colds, sinus infections????
Thanks....
deleted_user
deleted_user
yep..sure does take forever ..hang in there skygirl52 ...my b day is next month ..will be 52 ... and for my b day i get a add on med ...self in jection like most of you , seriously its my b day gift from my RA dr.
stay strong skygirl, at least you live where there is plenty of sun..maybe some good vitmain "d' will help ...thinking about you ..hang in there .