Living with lifelong RA

annie41

Hi Everyone, my name is Annie. I used to be your normal teenage girl, healthy, active, full of life. I would go to the gym 2-3 times a week, I would go for runs, so basically my life was normal, but then six years ago, my body and joints decided to start failing, and this was out of the blue. things got so bad that I demanded that my GP run a full blood panel, and low ad behold, the results came back, and I was told that I had tested positive for severe RA. Since then, i have undergone 6 life saving surgeries, and am unfortunately due to undergo my 7th surgery in a couple of months.
I was in complete denial for a good 2 years after I was diagnosed, but then I realised that, it wouldn't do me or my body any good, by making a bad situation worse, As I realised that I would now be spending more time in and out of the hospital, and that itself was a depressing thought in itself. I was immediately referred to a specialist unit in london and soon after I was started on a myriad of treatments, some of which worked, whilst others didn't. I decided then that I need to start thinking positive, as thinking negative would only make things worse.

Upon diagnosis, i was also referred to a Rheumy nurse specialist, who said that if I ever needed to talk to her, i could call her about anything. That become my lifeline for a long time. It really helped to be able to talk to someone, when i was suffering with a flare up. i also have amazingly great friends, who sit and listen to me rant and moan, as they have become my stand in therapists in a way.What I was told by my team, is that i should never be afraid to contact them if i feel I need to, or even if I need to have a bit of a moan, then I could. My little bit of advice is that you shouldn't be afraid to contact the rheumy team if you should need to, about anything, and even if you just need someone to listen to you have a bit of a moan, talk to someone, I know it sounds like it might not help, but believe me it does. I hope that this information helps, and i'll be around. take care of yourselves. x

barbara12

Hello annie41 and a warm welcome form me
You have been through a lot in your young life, I count myself so lucky that I got to my 50s before being diagnosed with OA and other stuff.like you I went to the gym regular for years...you are right about talking its is such a good release , I think that is why this forum is so successful we are good listener and like to support one another..I do hope you stay around you sounds so positive and that in itself is good..I really wish you well for the future x

Starburst

Welcome Annie. It's always good to read positive messages and I'm glad you've felt supported. I also am very grateful to the rheum nurses who always get back to me and can get an appt within days if needed.

I find the arthritis forums and their helplines also an excellent source of support.

Hope you enjoy being here.

prefabkid47

Hi Annie

Welcome to the forum if,as we always say,welcome is the right word!

We are a friendly and supportive crowd here and speak from our own experiences,so we can usually relate to you.I personally have both RA and OA.

If you ever want to unburden your worries or concerns,vent frustration or just have a rant feel free we all go through it.

Regards
Ron

annie41

hi guys, thanks for such a warm welcome. I am so grateful that this forum is here, as I finally feel like I can talk to people on similar journeys to mine, everyone here can relate to what I am going through. It has indeed been a rough 6 years, but i got really lucky, having such a great rheumy team. They have really worked so hard, to find the right treatment path for me, and i am finally receiving the right treatment which really seems to be helping me improve my quality of life. At first, i felt like this horrid disease was controlling my life, as i was so unwell when i was first diagnosed, that i spent most of the first year post diagnosis in and out of the hospital A&E, as my body started rejecting the initial treatment i was on, along with the fact that i ended up vomiting a lot and had high fevers that kept coming and going. So being admitted into the hospital was bad enough, so i had to keep thinking positive, as that was the only thing that kept me sane. Mostly, it was my amazing friends who helped me stay positive. But to be honest, at times, I wake up in the mornings, still not believing that this is lifelong. ohh well, the battle goes on I guess, so I just keep smiling and thinking that this will get easier.

stickywicket

Hello again, annie. I'm glad you made it over to this forum. As you can see, we are a very supportive community as we all understand the difficulties of living with arthritis in its various forms and, indeed, living with the meds too :roll:

I'm sorry you've already had to have so many operations because of it. What have you had done and how were they 'life-saving'?

I guess we all have periods where the arthritis seems to be in control but, with luck and, maybe, a change of meds, we come through them. I've always believed in taking up something new to replace whatever activity is lost. That's how I discovered Riding for the Disabled and Wheelchair Walks (walking as much as possible then riding for a bit). I've got to some lovely places. Stay positive and with a flexible attitude to life. You'll have a lot of fun

annie41

hey guys, this is annie again. in reply to the last post, I have unfortunately undergone 3 arthroscopic surgeries on my knees, 2 on my left knee done a year apart, then one on my right knee, sometime after that. by the time i was diagnosed, the cartilage in my knees had become very badly damaged, so the surgeon had to do a lot of debridement, to remove the damaged tissue and cartilage. In between all this, i have several day surgical procedures on my lower spine, as I also have severe degenerative arthritis of the lower spine. Then I had my middle toe on my left foot corrected and fused, as I was born with quite a severe hammer toe, which over the years, had become increasingly painful, so I had to have it corrected. then a couple of years ago, i unfortunately fractured my ankle, due to severe OA of my left ankle, which had left a gaping hole on the inside of my ankle, so i had to have some screws and a plate put in, to fuse my ankle.

I was hoping that I would not need anymore surgery after that, but unfortunately, one of the screws in my ankle, started working its way up to the surface of my ankle, and had started to protrude into the skin, so that had to be removed. When i had my ankle fused the first time around, and ex-ray showed a secondary fracture on the top of my left foot, which they could not do anything about at the time, so they left it, but since i've been waking around and weight bearing on it, it has made the fracture worse, so now i have to have this fixed.

This will sadly be my seventh surgery and my umpteenth time having to be re-admitted back into the hospital. Without all these surgeries, i would not be able to walk today, and i would have been in a wheelchair a long time ago. Thanks to the amazing surgeons who have worked on me, i had the chance to go to university, get my diploma and to graduate, and then I started working in a children's hospital in central london for a few years, and I'm really thankful that i got to do all that. my amazing orthopaedic team have given me back my knees and my anke and along with my amazing rheumy team, have somehow kept me out of a wheelchair.

Every time I was told that I my RA had damaged my knees and ankles, to the extent that i had to have life saving surgery, it would take everything I had, to stop myself from thinking that this time, was going to be the time, they I would get told that I would be wheelchair bound for the rest of my life. Which is why I am eternally grateful for everything the surgeons and my rheumy team have done to save my life. This is why i keep telling myself that I have to stay positive, because if it wasn't for all these specialists, who are fighting with me to enhance my quality of life, I would have been a lot worse off. For some reason, my doctors actually care about my future, and that means a lot to me. so, i guess thats my very boring and long winded RA story.

stickywicket

Crikey, Annie You are one tough cookie. So, you were diagnosed with RA six years ago and, since then, OA has set in, you have had six operations, including an ankle fusion but, nevertheless, you have graduated from uni and worked at a children's hospital for 'a few years'. I am in awe. How did you do that? I'm sure you have much to give to this forum but I hope we can help you, too, starting with support through the next op. When will it be? Have you had your pre-op yet?

annie41

Hi sticky wicket, I really do appreciate the compliments, but I am really not that great. I just kept telling myself that this horrendous disease has taken enough of my life, so I am taking back control of my life. As it is, I have had to spend most of the last six years, in and out of hospital, going from one hospital to the other, having surgery after surgery, so i was determined to stay positive and to make something good out of a bad situation. I promised myself that nothing was going to stop me from graduating from university and nothing was going to stop me from getting a job in my dream hospital.

So, I just pushed through the pain, the infections that i got, one after the other that landed me back in hospital quite frequently. i love my career and i am soon happy that I got to graduate and to work in a children's hospital for a few years. I just wish that I could have carried on working for as long as possible, unfortunately my body decided to go on strike and would not co-operate, so I fell ill again, which is why I decided to stop working for a while, i had to take an extended period of sick leave and felt it was inappropriate for me to go back to work, still needing surgery.

And also, thank you for enquiring about my surgery, it is very kind of you and i do appreciate the support. I am due to have my pre-assessment day after tomorrow, however, as strange as this may sound, I am really anxious about being re-admitted back into the hospital.I think its because I have grown to hate hospitals, as I have to spend so much time in them in the last six years. i also hate surgeons and doctors in general, not to mention the countless painful tests and procedures I have to undergo each time. The surgery itself will be the first week of april, and yes this surgery is being done, due to end stage ankle Osteoarthritis that had set in, before I was diagnosed with RA. This will unfortunately not be the last surgery I will have to undergo. in the near future, I will sadly have to undergo quite a big and invasive corrective surgery on my spine, due to the severe degenerative arthritis of my lower spine. So, for now, I just want to get through the next few weeks and then hopefully once i am fully recovered, I can start getting my life back to some kind of normality i guess.

I will keep you all updated with what happens. Again, I really appreciate everyone being so supportive and helpful. it is really nice to be able to speak to people who actually understand what i am going through. I am very determined to not let my RA and OA destroy any more of my life, so thats how i stay positive, i guess.So thats my boring story in a nutshell.

stickywicket

Ah I see now. You already had OA before the RA diagnosis and it would be the OA that caused all the need for surgery.

That was unfortunate. Most of us who have 'done the double' get OA because our autoimmune arthritis was not treated early enough with DMARDS. It is, however, not unheard of for OA to arrive first though it doesn't cause the autoimmune stuff so it's just an unhappy coincidence when that happens. How on earth did you manage to go to the gym 2-3 times per week and go for runs with such severe OA?

I think we can sometimes get more anxious about operations the more we have because we are more aware of what can go wrong. I don't, however, hate the surgeons and docs. On the contrary. Without them, and their skills, I wouldn't be walking today so I'm very grateful to them. I've been lucky to get some good ones. Hospitals? Well, I'd rather not be there but at least they kick you out quickly nowadays

Good luck with the pre-op. I hope all goes well.

annie41

hi sticky wicket, so because it took me almost 4 years to be diagnosed with RA of my ankles and knees and spine there was already a lot of damage that had been done to my joints. My RA was first diagnosed by the rheumy team at one specialist hospital, then i was referred very quickly to another orthopaedic hospital for surgery on my knees and ankles, due to the damage that I had already sustained. So, when i met with the orthopaedic surgeon, for my first foot surgery a few years ago, and they did the first set of x-rays, they found severe OA of my ankle and foot. Thats when i underwent surgery on my foot.

So, I guess i basically got a double arthritis whammy, which sucked big time. I had already had my 3 knee surgeries by this time, so i really got thrown in the deep end of the arthritis pool, unfortunately, and i guess i'm just a little overwhelmed, as I'm now facing my 7th surgery, then will have to have my 8th surgery in a few years, so i just wish that there was a pause button i could hit, cos this has all happened wayyyy too fast, and at times, it still feels like my head is spinning with all this, as I have had to handle all of this on my own and not having any support really sucked until i found this website, where everyone is soon nice and supportive. It kind of allows me to feel a little bit more relaxed. Most of the time, i am able to handle all this, but there are times where it just gets a bit much.

Again, thank u to everyone for being soon friendly and supportive. Its actually nice to know that there are people out there who can relate to what i have and am going through.

stickywicket

Nope, you've lost me again in your timescale of arthritic events but no matter. Much better to focus on the future than the past. Here's to an uneventful pre-op

annie41

Hi Sticky wicket, yeh, to cut a long and boring story short, I first started suffering from my OA and RA when i was around 17 years old. I knew that it was arthritis, because of how bad the joint pain got and because it ha affected all my major joints already. Also the swelling of my joints and the fact that I was acutely unwell, made me think it could only have been arthritis. So, I was officially diagnosed four years later, at the age of 21. It took me four years to convince my GP that i had arthritis. so, soon after that, my first surgery took place in 2010, etc.

its been a very long, tiring and nightmarish 6 years of very painful tests, investigations, scans, surgical procedures, and countless cannulations, due to repeated A&E admissions and finally my infusions. Things were finally starting to settle down, as the infusions i'm having have finally kicked in and i was starting to get my life back on track, when my ankle decided to brake again, so then i was told that if i don't have it fixed asap, then i will have to have my ankle completely replaced in a few years, so that scared me enough, because i've already had my ankle opened up once already, and i am not ready to have that repeat procedure done any time soon, as my body has just about recovered from the trauma of that surgery. So to get me to agree to being put onto the waiting list for revision surgery, my consultant decided to compromise with me, so That is the surgery I am unfortunately currently waiting for.

I think that i still haven't completely recovered from my last hospital admission for some odd reason, which was a week long.I think that i'm also just fed up with having to be re-canulised every 8 weeks, for my infusions. i know that the rheumy team and my orthopaedic team are trying to help me,but i just seem to be having a bit of a bad week, although that tends to happen when i am due to undergo surgery. This does indeed sound like i'm having a bit of a moan, and i feel silly for complaining about silly little things, but this is the only place where, I can vent about my arthritis, and people will understand.

prefabkid47

annie
I have both OA and RA.Had ankle replacement surgery now waiting for a new hip.
I have read your posts with great interest.My problems seem so 'minor' compared to yours.
Your attitude and resilience I have found inspirational.Really hope you achieve all you desire.
Ron

annie41

Hi Ron, thank you for the compliment, but I am just the average arthritis patient, unfortunately I have just had to deal with a few more issues i guess. a while back, I realised that this damn disease has ruined enough of my life and if i keep letting it, it would ruin my life entirely, but i've decided to take back control of my life, because I have decided that I am going to enjoy my life, as I unfortunately have to spend a lot of time in the hospital having treatments, therapies, scans, tests and the boring follow ups that come around so fast, so i'm enjoying what little time i get to spend at home. sadly, this crappy disease has now affected my heart,due to all the wonderful side effects of all the medications i have been on, so now i am undergoing treatment and yet more scans and tests to figure out how much damage has been done. Anyway,thank again for the vote of confidence. i hope you aren't having too much of a rough time with your arthritis, as it sounds like you've been through more than your fair share already.

stickywicket

How was the pre-op, Annie?

annie41

Hi, my pre-op is actually tomorrow, so not really looking forward to it, or the next 2 months really, as I hate the whole surgical process and having to go back into the hospital, to have yet another very painful surgical procedure carried out, just to improve my quality of life, but it has to be done, so hopefully it won't be so bad this time. I think i've just been a little traumatised, since my last admission which was a week long. But thanks for asking. will let you all know how things progress.

stickywicket

annie41 wrote:

Hi, my pre-op is actually tomorrow, .

Aha! You'd forgotten it was a leap year when you said on 29th that it was the day after tomorrow No matter. I hope it goes well today instead

annie41

Hi sticky wicket, yeh, i guess i forgot its a leap year this year. lol, i'm losing track of time, oh man i'm getting old, hehe, but thank you for the message. i hope that my pre-op goes well today as well.

annie41

Hey all, its annie again. So, had my pre-op day before yesterday and it was pretty uneventful this time around thankfully. The doctor and the nurses were surprised to see how big my medical notes file was. They were shocked to learn that i had, had many previous surgeries, i guess because i am still only 27. I have to say that I was pleasantly surprised to see how nice the nurses and registrar were. The nurses who had done my last few pre-assessments had been somewhat abrupt and weren't as nice. I guess i just hate the whole surgical process, having had so many previous, less pleasant experiences. Now, i just have to wait for my actual surgery, which is always the worst part for me. This week has been a pretty boring week, filled with medical appointment after medical appointment. I'm just glad that its finally the weekend.

stickywicket

Good. I'm glad it all went well. Do you have a date yet for your op?

annie41

Hey, my op will be in april, so now just waiting, which is the worst part. i'm hoping that this op will finally fix my foot for good. but the surgeons don't think that this will be the case, but i'll just have to wait and see and hope for the best i guess. I'm trying to stay positive.

stickywicket

Bumped up for Carly.