Things getting out of hand.com

the above should be a web site! It's how I feel at the moment. I was back with my ortho surgeonon Monday, and shocked to learn I will be in this boot cast mostly for another 3 months, and I thought he would be sending me back to work. What a surprise. I can cycle, but not walk too much, muffin tops here tostay I guess!

Have just completed an applic for disabled drivers badge, has to go to my GP next, I hope I get it. also, got form from state illness benefit this morn so have to drop that to my GP also to be completed, one big lng life of filling out forms!

I also have to do a tax return, and a health insurance return, I have just bundles of paperwork everywhere, am missing the facilities of a big company ie photocopier that do both sides, laser printers, fax machines, scanner, shredders. Tried to do some pho,to copying on the Spars copier And seriously it must have come out of the Ark! 20c a copy too!

Also, and I am venting now, and on a roll, my left ankle is so sore, my right wrist & my left knee, and my neck is stiff for a week! the surgeon did a good job on my arthrodesis of right ankle and that is just such a slow recovery process, bUt worth t I think. He wants an MRI of the left ankle and even tho it's not as bad, I innocently thought might be a lesser operation, he thinks will need same operation. I know damn right wrist needs to be fused too. luckily, I took out an income continuance policy at 18 years f age (well it's part of my pension) so will be applying for that as my work will only pay me til March and state benefit is quite low. Bet there will be a lotta lot of form filling to get them to cough up 2/3 income and pay my pension contrib, I am so sick of this miserable RA.

Yeah, also my work pals seem to be just that, as not in touch! Have yet to let boss know another three months and I'm guessing I ll be fit for work on the 12th, yeah you guessed the 12th of NEVER!!! Lol

Bloods early in morn, and I'm guessing since have decreased mtx to 15mgs frm 20mgs per week because of high Alt, bet my ESR, and CRP will be up.

Damaged jointsor liver damage mmmm which is worse. Maybe the Humira just not working anymore, as was predicted by many on here, they said it does happen. Well as you might surmise I am not in the best of form, and I didnt even mention my insomnia!

Hope I havnt been too awfl. Pls excuse typos as n iPad as wrist too sore for lapper.

Love ya fellow sufferers, Gina.

17 Replies

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  • Hi Gina,

    So sorry for all your suffering at the mo!

    It drives me nuts all the extra paperwork since ra! Before RA I had never filled a claim form in for anything or asked for anything from the goverment etc.

    Im sure its someones job to make these forms as god dam akward as possible to fill in! If you spent the time to fill them all in yourself quickly then I suppose they could say you were fit for work in that sense.

    Ive been struggling to stay in work, and my GP would only agree to me working a couple off hours a day, but my boss is now being awkard and wants my contracted hours changing to suit them! Because off recent new computer system they need to get rid off some out off our office and I feel Im either going to be an easy target or they are going to reduce me to a contract off only 2 hours a day! which wont be worth my while working in the long run.

    Im hoping to push for going back to 4 hours after my treatment before they try and reduce my hours even though im not really well enough i want to keep my job!

    Hope your hand pain eases soon and if you do need the op that its like you say a much quicker recovery than your ankles have been.

    I was told my hands need surgery but my rheumy said they wont even look at ti untill they get some control off my ra!

    Take care and thinking off you x

    Julie x

  • You both sound like your going through the works. I don't know if you know there a system for computers called dragon whereby you talk to your computer and it inputs what you say. I think this will help you both. I don't know where or how much it costs. It is worth looking at though.

    I have missed you gina and your blogs,lets home my friend you soon have some good news. If you filling in forms you can have someone do it for you if it is for dwp.

    Julie you can get advise about discrimination in the workplace from nras they will tell you all you need to know where you stand regarding work,give them a ring and see what they say.

    I hope you both have some good news soon and in better health.

    Love to you both, Sylvi.xx

  • O Tina I'm so sorry, it sounds like a long road. Can't offer much, although maybe a practical thing on your paperwork. When I retired I really missed being able to photocopy. Then I found you can get combined printers, scanners, photocopiers for less than £200. Mines an hp and it's a bit fiddly but it does work. Hope you can see some light at the end of the tunnel soon

    Cathie xx

  • My god gina don't know what to say, you're really going through it at the moment all I can offer you is my thouights and prayers for a speedy recovery although as I'm sure you know if its not one thing its another. My RA is good today but I also have osteo in my back and that is really bad at the moment so back on pain meds. I feel for you, take care and good luck xxxx

  • (((((((((((hugs)))))))))))) for you and wishes you feel better soon.

    Isn't it great how, when you start to moan about something it turns into a rant about everything, and it does you the world of good to get it off your chest.

    Beth xxx

  • Sorry to learn you are in a bad way Gina - hoping all this resolves soon although it sounds as though you're going to have to be very patient and just find other things you can do while continuing time off work and taking it easy.

    How do you know when wrists are bad enough to warrant a wrist fusion? Mine both vary from sore to painful all the time. I've lost my splints today and am cursing because I can't think where they have got to but couldn't wear them overnight so everything is painful. At least it's only my top half that's giving me jip - ankles, feet and knees are constantly threatening to flare up - but so far the RA just lurks in the background down there and that makes me feel pretty lucky. Hope the day/ week/ month/ year improves for you and take care.

    Tilda xx

  • MRI on right wrist showed extent of damage, about a year ago, there is no inflammation now as Ra controlled by meds mostly. So, fusion would protect wrist, if I was to have another bad flare. Though I suppose steroids would help, I wint be rushing to have surgery.

    Thanks for all thoughts just on way for blood tests, better after nights sleep.

    Sorry for big moan, Gina.

  • Good luck today Gina - just read your blog, how horrible and frustrating. Are you keen to get back to work or are you happy enough resting and recovering?

  • Never apologise for 'moaning' on here Gina - we all need to vent about the frustrations of this horrible disease and this is a good place to do it as we all understand how you're feeling.

    I recently found a printer/scanner/copier for £99 - all the big chains are competing with each other for sales at the moment:-)

    I use the Mac version of voice activated software - it was a necessity when I retrained as I couldn't possibly have typed 10,000 word assignments or taken hand written notes in training sessions. I used a digital voice recorder and transcribed notes from that.

    I'm sorry that your recovery is being so tediously long - I know that place - but it will be great to have a fixed and comfortable ankle at the end of it. I've found when I've had to have a 2nd same type surgery that although I feel more dread before hand [realistic expectations] the recovery period is better because it's not an unknown quantity.

    Vent as much as you need to!

    Cece x

  • Hope your feeling better today - i am thinking of you

    Julie x

  • Oh my God, Gina! What an awful lot to deal with. No small wonder you don't sleep! But ohmyword, how I can relate to alot of what you are saying!

    Paper work always overwhelms me, it's so intimidating, I'm always afraid I won't put the right words in there. Always feels like a college final.

    When I was working, They offered a Long Term Disability insurance policy, for $20. a month. I signed up because even then, I knew I was likely to need it before retirement.

    Sure enough, only paid into it 2 months when I had the giant flare in both feet, while I was at work. I told one of my pals that my shoe felt tight, took it off and there was my rt foot, all red and swollen and then I couldn't get the shoe back on.

    They made me go to the Emergency Room (I worked in a hospital lab, fortunatley) Teh dr admitted me, had MRI, labs, etc. and I never did return to work. That was the beginning of my RA. So, the LTD Ins. paid 70% of my gross pay, so that worked out to be just about what my take-home pay had been. What a relief that was, as I had just been divorced 2 years before and was buying my house. Then I went through the endless paperwork and mailings to apply for Social Security Disability. Took over a year, but I did get it, after many doctors had to write letters testifying to my disabilities. Even my son had to write one saying what he saw of changes and difficulties I was having.

    Work pals? There were many, just that. I always felt great that they all loved me. Yeah, as long as I was there doing my job and not making them work short-handed! Only 3 came up to the room to see me while I was in the hospital. But then, 2 of them are still friends I see and talk to often.

    For a long time, when I had to go back for lab tests, they would ask, how much longer, when are you coming back, etc. Not much inquiry as to how I am doing.

    Anyways, it all worked out alright. I received the long term disability insurance for almost 6 years, until I reached retirement age, then sSocial Security retirement kicked in, plus my pension. Worst thing was , my SS retirement was $462 less per month, than my disability had been!

    Less going out for lunch, less shopping trips to nearby cities, etc. But, I can manage! Eventually sold the house, since I had to hire too many people to do yard work, snow removal, leaf pick up, etc.

    Moved into this condo and here I am!

    I think I would opt for the small amt of liver disorder, rather than damaged bones. Liver can recover, bones can't.

    I am on the 3 day of Lefunomide (Arava) with MTX, and Simponi. I think it's time for REMISSION !!

    Hope this didn't scare you more, it really does work out OK, just shouldn't have to go through and give up so much to get to the OK stage!

    Oh, I've had the boot deal also, but mine was spontaneous pressure fractures of 2 metatarsal bones in my left foot. Had to wear that awful, clunky black boot all through the holidays 3 years ago. Not as long as yours though. 3 months was enough.

    Take a break from the paper work, have a cup of hot tea somewhere out of sight of the papers, imagine yourself sitting on a big rock, above the shoreline, with sea gulls squeeling above, the sun warming your back and shoulders, and wildflowers peeking out from behind the adjacent rock. God that sounds great !

    Keep on keeping on , Love ya, Loret

  • ah ha, so you did fill your arava prescription.... fingers crossed that it does the trick. Px

  • This was a great reply Loret, just re reading it now. Gives me hope things will work out. even though we are oceans apart we are having same life experience, tho I am married 28 years, no divorce (sorely tempted by times) only johing he is my sole mate we met when I was 16!!! I am 50 now..... G.

  • Hello again! Now how is the paperwork going/ Out the door I hope.

    It is alot, seems the people who have to read it ought to want to simplify the whole mess!

    Hopefully , while your foot continues to heal, you can get your meds, etc sorted too.

    I think I'm doing OK with the Arava this week, atleast do not have any side-effects, but am still so tired ?Maybe that IS the side-effect.

    You are very fortunate to still have your sole mate. I certainly intended to (gees I should write a book) We just drifted apart, went different directions career-wise, he didn't like my more educated friends, so we didn't socialize much. Had the boys and did lots of their activities with them. But, when I could no longer be superwoman, doing all the household work while working 50 hrs a week away from home, when I had the first spine surgery and fusion in 1985, I just wasn't perfect anymore. I still did all I could, and my dear sons were a great help, they were able to do chores, did their own laundry, ran the vaxc, loaded the dishwasher. I let them do that so we could have time on weekends to do fun things, like ice skating, roller skating, movies, etc. My payday Friday was the evening we went out for dinner.

    Well, anyways, it wasn't all bad. Hubby preferred to be a workaholic and work on a tractor in a field planting corn, for a friend, or combining it later, mowing hay and baling it, all this ouside his regular job at the bank., and without pay.

    But the boys grew up, went to college, the Air Force, got married, went to Medical school, more weddings, babies, etc.

    Now, in these dead, cold, dreary and boring days of Winter, it does get lonely. Ironically, We stay in touch, talk atleast once a week, get together at some of the grandkids games. Yikes!

    I just looked up, can't believe I wrote all that, told you I might as well write a book! Have a nice, warm, cozy weekend. Love ya, Loret

  • Hi all, computer is now working again!!

    So... I agree about forms, agree about work worries, agree about difficulty getting benefits. I've never done any of this form filling worky benefits before and I've worked since 1976!! And i agree RA can be horrid, Phew I feel better, hope you do!!

    Oh and while we are at it wanted to use the disabled campsite for V festival and have letters from Rheum to say it would help me but V festival will only help those on DLA.....I'm trying to avoid benefit and stay at work but I cant even camp near a field to save me a long walk carrying tents( even though I have a disabled car park badge) now fed up Phew ...yes I think I now feel better lol

  • How is the raised liver alt doing now Gina? I really hope you find it's come back down and you can get your MTX dose back up as that would be one bit of good news you really need at the moment. Fingers crossed for you

    I am hoping mine will have dropped back down when I'm tested on Monday so that I can return to 15mgs MTX - the drop down to dose for you.

    I've dropped my pain meds for fear of bringing on liver damage as have been taking them 24/7 for 6 months now and that doesn't feel right somehow. I understand that it's hard to choose between liver and joints - think Loret is probably right to say go for the liver alt - but the prospect of internal organ damage is pretty scary too.

    It's entirely different for me because pain meds and anti-inflams aren't actually helping or slowing down RA joint damage so I decided enough was enough for a while. Now doing cold turkey a bit I admit - especially in wrists and hands which are rather sickening today - sort of twangy pain from wrists up into fingers and they hurt to touch..Does anyone else find that if they are brewing up to a flare they feel all burning and weird all over? My feet are on fire today. Hoping this is just the ibuprofen-withdrawal induced rather than something bigger on it's way. TTx

  • Hi Gina

    You keep venting, certainly doesn't do much good bottling everything up. And it does sound as if you've got a deal of things to cope with right now. Really feel for you having to have boot for another 3 months, but do try not to fret about work as it's more important that you have an improvement for you and for the rest of your life.

    Isn't it weird that when you aren't able to move around so much, so should be able to get through paperwork, it gets so much harder to settle down to focus on sedentary tasks? I'm self employed, so hve to finish tax return by end of month and I can see it geting done at mignight on 31st... Px

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