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Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 7/5/2009 1:24 PM (GMT -7)   
Hi, I'm a newby and am also in the chronic pain forum where you may find a list of my delightful complaints - variety is the spice of life! RA, however, has been the main underlying condition and most other complaints sprang from that. i am mobile in the house but generally wheelchairbound when I go out. I am on Ibuprofen, prednisalone, Enbrel - wonderful injection! and then all the other medication which I take because of the side effects of the RA all of which give me other side effects for which i am on medication all of which ooops!!!! It's like being in a time loop, isn't it. I've had active RA for fifteen years but probably also had childhood arthritis but it was not diagnosed. I only joined yesterday and have had lots of replies so i thought I would try here as well.
Love and hugs to all fellow loopers

arthur Itis

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 7/6/2009 7:46 PM (GMT -7)   
Hi Arthur, Yeah we're all on that wonderful merry go round of medications for RA and medications to tolerate the medications!!! I've only had RA for nearly 3 years but unfortunately seem to be on a downward spiral. I'm waiting for that magic plateau to happen where my symptoms just pan out for a while? I think I've learned one thing with this disease its that you enjoy your good days. I'm on humira and mtx as well as mobic and nexium, with panadeine forte to keep me ticking over. I'm also currently on antibiotics for bronchitis and prednisone for asthma, but thats hopefully short term. I have swollen knees, hips, elbows, carpel tunnel x 2 plus my lower back and neck have decided to join the party. If you're in a wheelchair then you're in a worse state than I am so my heart goes out to you!!! It's a very tiresome disease, but this is agreat place to whinge!!! Welcome anyway, sorry about my big whinge, being sick alwys brings me down, golitho

Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 7/7/2009 3:21 AM (GMT -7)   
Hi there, golitho
If somebody had told me twenty years ago that I would find myself coping with this mess I would have laughed at them, but the strange thing is that you do cope. The down side for me is that on good days I get fooled into thinking it's gone forever: 'Oh, great! it's gone! I can get on with my life now, so. . . tomorrow I will do this, that and the other.' Then tomorrow comes and the RA and all its club members: osteo, sjogrens, AS, degenerated discs, osteoporosis, occipital neuralgia  return with a vengeance, yelling at the top of their voices, 'Yah! We fooled you! Here we go again!' 
Like everybody else I know on the good days I do too much and even though I know I am doing too much I still go on doing it! Stupid or what?
I'm a borderline wheelchair user, by the way, I am on my feet in the house and for short distances outside but generally outside I'm in my wheely-bin, just like the other rubbish.
Most of the time I try to ignore my health problems and it is only when I write out a list, as on here, that I become aware of just how bad it is - then i nk about little kiddies with it and people with far worse complaints and I put it to the back of mind and try to get on again.
Ah well - c'est la vie!
art6hur Itis
Better to try all things and to find all things empty, than to try nothing and leave your life a blank
 
 


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 7/9/2009 3:34 AM (GMT -7)   
Hi Arthur, I had a great day today so can totally relate, slightly feeling the toll on me now at days end with my knees stiffening as I type and the ole carpel tunnel at me on the computer but I had a very active day. Made some art, took my youngest to dancing, I feel good and happy. Maybe this is my turnaround point!!! You sure have a huge amount of conditions!!!
I'm on my mid year break from teaching so it feels good to get some me time at long last. Have had an exceptionally busy year and I know the stress doesn't help but have just felt one condition snowball into another to the point where you're in a big black tunnel. It feels so good to be pulling away. I drew a big rose with tattered petals, sort of summed me up somehow!
I know what you mean by seeing people with worse complaints putting your own problems into perspective, thats what I try to keep reminding myself about.I started PT a few weeks ago and there are some pretty sad cases there. I'm hoping it will get my hips more active and increase my mobility, I hobble around the place, not good for teaching!!! Write again, golitho

Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 7/9/2009 11:16 AM (GMT -7)   
Hi there golitho
Fancy that then!" I was a teacher too until my eyes deteriorated. I retired about twenty years ago but still miss the kids, I really love teaching teenagers, particularly the ones with a wicked sense of humour. Now my grandchildren are teenagers - well in their twenties really and we have laods of laughs together. I don'y know about you but i love laughing and it's such a fantastic therapy. You are into art, are you? I trained in art but never taught it. It's strange I used to enjoy doing it but not teaching it, my subject was and is literature - give me a book and I immediately become unconscious, or so my hubby says.
Write soon,
arthur turn tongue
Better to try all things and to find all things empty, than to try nothing and leave your life a blank
 
 


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 7/9/2009 8:44 PM (GMT -7)   

Hi Arthur, I teach at university. Mainly printmaking, screenprinting, lithography and relief printing but cover most areas. I have a mixture of first year classes and second/third years. Sometimes teach post grads too, I love it. Takes a fair amount of energy but I really enjoy the interaction with the students. I'm determined to try and get my own work back on track this term, my kids seem to dominate my free time and I feel this desperate need for self expression. Do you ever make art or craft now?

I love to read too! Plus I love to laugh! Sorry you're eyes are deteriorating, can you still manage to read or do you listen to books now? My middle child has a severe form of learning difficulty so I get him CDs of books to listen too and give him the independence of reading. He is nearly 14.

Best wishes, golitho

 


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 7/9/2009 10:19 PM (GMT -7)   
Hi,
I'm fairly new to these forums but getting so much out of them. Having just read all your posts has lifted my spirits again today just when I needed them. I really felt alone until I started reading everyone else's problems, and your so right you think your going through a bad time or day and then you read that someone else is suffering so much more than you are and that makes you look at your condition in a different light.

I've only been diagnosed with AS since November last year, but it turns out that my condition is 7 years down the track...go figure! I put all aches and pains in my lower back, swollen fingers etc down to just over doing it and old age (I'm 53 so that's not that old is it?). My specialist has been trying to figure out a way of getting me to a more comfortable condition as Humira and Methotrexate together is helping with the lower back but not the huge amount of pain I have in my right foot.. Haven't worn an enclosed shoe for 15 months. I start on Remicade in September when I return from a trip overseas (that will be interesting on a plane for 24 hours) plus no family members know about my condition or that I walk with a limp and have a disabled sticker... May be time to come clean?
This week I feel totally out of control what with pain and news I will be going on Remicade, death of several family members and pressures at work (which I do at home as own business). My doctor tells me to take hour by hour, day by day and I'm learning to just control the things I can and to let go of the things I can't. Sorry sound really down don't I, must stop that. As I said reading your posts makes me appreciate that things for me aren't really that bad. I thought about meditation to try and zone out and focus on the good things, does anyone out there use any forms of alternative's to help them?

I hope you all have a better day today and the sunshines on you. Take care and be happy, here's to a good day tomorrow for all.
Peggy Baggins

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/9/2009 11:51 PM (GMT -7)   
Everyone has said something I can relate to. Like how on the good days, I go and go like there's no tomorrow, knowing full well that I'll probably end up paying for it the next day, but I do it anyway. And meditation really helps. I pray and meditate every morning, and thank the Powers That Be for my health because I'm not in a wheelchair. In fact, I thank my Higher Power for everything, the good and the bad, because having gratitude seems to bring more positive things into my life.

I have a little infection that normally I wouldn't be grateful for, but I am grateful because my rheumy wants me to skip MTX this weekend, until the infection is resolved. I'm not sure what the result of skipping a week of MTX will do to me next weekend when I start up the MTX again- thoughts anyone? But I'll be enjoying Sunday dinner with my parents this weekend, which I haven't been able to do in a while.
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 7/10/2009 2:37 AM (GMT -7)   
Hi golitho again.
Yes i do manage to read but it's becoming increasingly difficult. I have no useful vision in one eye but have some in the other so with good lighting and a wide computer screen and BIG fonts i manage. I believe the good eye is, however deteriorating and i am really nanxious trhat i retain enough useful vision to complete my PhD by next June/July. it's typical isn't it? You choose a subject for advanced study 'Thomas Hardy and the Carnivalesque' which requiores a fantastic amount of reading when you know you can hardly see anyway! Glutto for punishment that's me -  never min d, I love it so that's all that matters.
Your work sounds fascinating and I'd love to see some of it.
Ooops must go - very friendly, helpful next door neighbour has just arrived for a cuppa and a chat - catch you later
besties
arthur
Better to try all things and to find all things empty, than to try nothing and leave your life a blank
 
 


Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 7/10/2009 4:37 AM (GMT -7)   
Hi Peggy
Nice to meet you. I know what you mean about family members. I know I wear a mask in front of most of them,  as I do in front of most people. The mask rarely slips and then only in front of people I am really close to in certain ways. I mean I'm close to my children and grandchildren but I always wear my mask in front of them. My mother, when she was alive, and my brother and sister just can't accept my illness, I'm sure that this is beacause they see the person they have always known - the organiser, the comedienne, the main source of comforting words. They do not, or not choose to see the real me now, they just can't come to terms with it. My brother thinks I'm a hyperchondriac and this used to worry me, until one day a very young, but very good counsellor asked why I worried about it and added, "That's his problem, not yours.
" and this really helped, because I can only deal with my condition, ot his.
By the way, I'm 69, Peggy and am definitely NOT old so you can't possibly be! tongue
Have a good day, Peggy, and carry my love with you in your pocket
Arthur xxxx
Better to try all things and to find all things empty, than to try nothing and leave your life a blank
 
 


Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 7/10/2009 4:43 AM (GMT -7)   
Ladywriter,
I find my faith such a help, even though I am merely a 'practising' Christian - I believe if I keep practising maybe one day I'll get the hang of it!! Heeheehee. Seriously though, my faith is certainly a help, particularly in those dark lonely hours between two and four when sleep just won't come.
Hope your return to mthtrxte is good it was good for me for about four years and then i had to come off it - now I'm on Enbrel the wonder horse! smilewinkgrin Life was a ***** without it but it such a help now.
Hope you enjoy your family linch
all the best
arthur
Better to try all things and to find all things empty, than to try nothing and leave your life a blank
 
 


Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 7/10/2009 2:25 PM (GMT -7)   
I notice I put 'family linch' which sounds like a family hanging! Sorry - hope you have a good family LUNCH
arthur
Better to try all things and to find all things empty, than to try nothing and leave your life a blank
 
 


ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/10/2009 4:07 PM (GMT -7)   
Thanks, Arthur. I try to spend as much time with my folks as possible, since their health has been rapidly declining for the last year or so. They're learning to accept my illness, and understand that I have good days and ***** days, and so am unavailable at certain times.

They, especially my Mother, are a major part of my support system-people I talk to about my disease, but I have to branch out more because they won't be around forever. I can tell my Mother everything, although sometimes I don't. When I have to talk about what's going on with me, healthwise, I try to dole out bits and pieces to my friends so as not to overwhelm anyone, because it sometimes overwhelms me, and I don't want to do that to my friends. I have a therapist and a psychiatrist who talks and listens and doesn't just dispense meds, so they're important in my support system.

This website is really a blessing, because I feel I can talk about anything here, and so many people have already been through what I'm going through with the RA and similar illnesses and can offer advice and/or condolences, whatever the case may be : ) But when it comes right down to it, my Faith sustains me immensely. Glad it works for you too.
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 7/10/2009 5:06 PM (GMT -7)   
Hi everyone, I had a family reunion about 4 weeks ago, my parents 60th wedding anniversary!!! I went and got cortisone injections in both hips the week before I went home so I could cover just how bad my limping is!!! So I can totally relate to the mask. I don't want to be defined by my illness, I've always been a high energy sort of person, bubbling over with my enthusiasm for life. I don't want this stupid disease to wear me down!
Arthur, I haven't read Thomas Harvey since I was in my 20's!!! But I loved Tess and the Derbyvilles. I think studying keeps you young, I get enormous energy from my students discussing their thesis ideas or just what they're trying to say with their work. Certainly helps keep my mind off myself!!!
I'm 49, just got told I need two new surgeries but only minor ones. Carpel tunnel and good old endometriosis raring their ugly heads.
I find I tolerate a week without my meds ok its two weeks when I start to miss them. I think the half life builds up in your system and you do get some sort of grace period before you crash!!!
I gotta fly, time for soccer. It's Sat morn here! Golitho

Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 7/10/2009 5:26 PM (GMT -7)   
Dear Ladywriter and golitho
Yes, that's what I do, dole out bits and pieces but mainly because I think people just wouldn't believe the whole amount - I mean apart from in here, who would?
And, golitho, that's exactly it - I don't want to be defined by my illnesses, my response is generally the brain works but the body doesn't, and this is precisely what studying permits me to do. Up at uni I fell like a 26 year old with a few visual probs and a mobility issue, whereas with people of my own chronological age i feel like a wasted heap of rubbish. I hate it when conversations turn into competitions about illnesses and fell like asking 'Do you want to phone a frined or will you take 50/50? It's no use asking the audience because they would all give negative answers too.
 No, I'm a student, not a pensioner! Maybe I'm just in denial!
I so admire you, ladywriter, a recovered alcoholic for so long, that's quite a feat, you must feel so proud.
You know I've only been in here (sounds like a Jack Nicholson ward!) for less than a week but I'm finding it really helpful in that it helps me to let go and to listen to other people's probs and admire how they deal with them. I suppose we are all trying to fly either over the rainbow or over the cuckoo's nest turn yeah
arthur
Better to try all things and to find all things empty, than to try nothing and leave your life a blank
 
 


ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/11/2009 12:59 AM (GMT -7)   
Golitho and Arthur and everyone else,
I too don't want to be defined by my illness, but I'm not sure how to do that yet. This is still pretty new, just having been diagnosed 12 weeks ago with Rheumatoid Arthritis, starting MTX 4 or 5 weeks ago, and taking a "temporary disability" leave of absence from work has kind of labeled me. Then there's the rheumy's diagnosis. And finally, I've labeled myself.

But I want to be the same person I was before the diagnosis who just happens to have RA, and I guess that may not be possible-I really don't know at this point. Maybe I'm still in a little bit of denial.

I guess I really feel kind of self-centered at this time, and I try to stay out of that as best I can, but it's hard when the RA affects practically every aspect of my life. Thank goodness for this forum. I'm so grateful that it exists and is populated by such supportive people. Here, I don't feel like some freak of nature. Thank you all.

Arthur-thanks for the compliment on my sobriety. I am proud of that accomplishment, but it is tempered with humility. I had a lot of help. Didn't go to rehab, but my Higher Power and the many people God put into my life who volunteered their time saved my life. I built up a support system and used it to get sober, and I'm doing the same thing with my RA-building up a support system with good physicians, physical therapists, a pain management counselor, family, friends, this forum, and of course, my Higher Power. My goal is to beat this disease into remission, and my rheumy thinks we can do it, which gives me immense hope.

ladywriter

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 7/11/2009 4:10 PM (GMT -7)   

Dear Ladywriter,

I myself am only just coming out the other side of this fog after nearly a year of being told I have AS. Your going through the normal procedure I believe.  Having sites like this has helped me so much as I don't feel alone anymore and I can talk with people who truly understand what your going through.  I know we have great families and they're so understanding but at times I don't think they fully understand how frustrating it is not to be able to do the things you used to... I myself used to cycle 35K's a weekend, play golf, bushwalk, swim etc with my husband, and lead a very active life.  For the last 15 months I've not been able to do any of these things as I'm completely buggered for days on end after and in great pain during and after.  One thing that has helped me is know to control the things you can and let those things you can't go!

This weekend I put on a pair of my wellies and went to a goat show with my husband, I limped, I was in pain but pushed through it. Yes todays now a 'not so good one' pain wise, but boy do I feel good having got out there and given it a go. It was worth it.  I'm not saying I can do this all the time, but when I feel I can I'll try.

Don't be hard on yourself  nono   try to look at the funny side of life.  smilewinkgrin   I used to be embarassed about the 'disabled sticker' for my car as I drive an MX5, but as I say (and a friend has suggested a bumper sticker) I may be a bit disabled but my brain isn't and I still have taste!!!  I don't drive it often, only when dry outside that way I can have the roof down and easier to get into.

Take care, keep talking it helps.

God bless and I hope everyone on this forum has a better day tomorrow.


Mrs arthur Itis
Regular Member


Date Joined Jul 2009
Total Posts : 41
   Posted 7/11/2009 4:40 PM (GMT -7)   
Gosh -I'll bet the MX5 looks good with the wellies - now that is what I call style!!!
Arthur
Better to try all things and to find all things empty, than to try nothing and leave your life a blank
 
 

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