Wellness

[twinkies]

I have severe psoriatic arthritis and M.C.T.D. I have severe crippling of my hands and fingers as well as other,I  do my own typing and do not have voice dragon , however I make many mistakes but often just keep going as to avoid frustration and just give up , i cannot make a fist with my left hand and cannot open my right hand as fingers are contracted , I had some surgery on hands several years ago and it helped , It was painful and i needed more but did not want to do it because the surgery flared up my arthritis so bad So i do type and have to keep going , Yes you can do it , Just do not give up

. cathy from ma.

[LilacTree]

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@sophiamarie wrote:

@LilacTree  I thought you had a daughter living with you.  If so, then why can't she help you with your groceries and other things?  Just a thought.......

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Unfortunately, she's just as sick as I am.  She has chronic Lyme Disease and spends many days in bed.  She was sleeping when the groceries came and I would never wake her up because I know she was up all night.

She's been on antibiotics for two years now and so far, no improvement.  I'm extremely worried because of this new so-called super bug they discovered in a woman right next door in PA.  They are blaming overuse of antibiotics which we have known about for years but nothing has ever been done to curb it.  I don't know what else she can take, nobody is interested in that disease.

I put the freezer and refrigerator stuff away yesterday, then folded up the bags.  I left all of the dry foods on the kitchen table.  I am now drinking Pedialyte and Gatorade to try to reverse the dehydration.  If I still feel this way by the end of the day today, I will go to the ER.  I hate to do that because there are more germs there than there are here at home.  However the IVs are more successful in treating the dehydration than drinking electrolytes.

I may call one of my other daughters, but they both have parties to go to down the shore.  They don't know I'm sick.  I'll just see how the day goes.  This is RA, this is how it is.

Getting another glass of Pedialyte and then will lie down.  That usually helps.

[GingerPeach]

@LilacTree

I found a promising article about what may be a cure for RA (of course right now it's not on the market).  I have asked my rheumatologist to see whether there are updates since I have no access to online medical journals: 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

Here is an excerpt:

"The new treatment by Joana Duarte, Luis Graca and colleagues from the Instituto de Medicina Molecular (IMM) in Lisbon is remarkable because it specifically stops the abnormal immunological response behind RA without touching the rest of the immune system, and a short treatment has long lasting effects suggesting that it might even cure the disease. In contrast, all therapies available for RA (or any other autoimmune disease) work by shutting down large parts of the immune system - compromising the patients’ capacity to fight other diseases - and have to be administered for life, meaning that they control the symptoms but not the underlying causes of the disease contrary to the therapy now published. The research has just been published in the journal PLoS (1)."

It would be great if any RA or other auto-immune sufferers could present this article to their own doctors and, with any luck, report back.  My own doctor has been very slow to respond.

In the meantime, have you tried an exercise bike?  I find that walking doesn't work for me since even too much walking can cause more joint damage, but so far riding my exercise bike has not caused any joint damage.

[LilacTree]

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@GingerPeach wrote:

@LilacTree

I found a promising article about what may be a cure for RA (of course right now it's not on the market).  I have asked my rheumatologist to see whether there are updates since I have no access to online medical journals: 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

Here is an excerpt:

"The new treatment by Joana Duarte, Luis Graca and colleagues from the Instituto de Medicina Molecular (IMM) in Lisbon is remarkable because it specifically stops the abnormal immunological response behind RA without touching the rest of the immune system, and a short treatment has long lasting effects suggesting that it might even cure the disease. In contrast, all therapies available for RA (or any other autoimmune disease) work by shutting down large parts of the immune system - compromising the patients’ capacity to fight other diseases - and have to be administered for life, meaning that they control the symptoms but not the underlying causes of the disease contrary to the therapy now published. The research has just been published in the journal PLoS (1)."

It would be great if any RA or other auto-immune sufferers could present this article to their own doctors and, with any luck, report back.  My own doctor has been very slow to respond.

In the meantime, have you tried an exercise bike?  I find that walking doesn't work for me since even too much walking can cause more joint damage, but so far riding my exercise bike has not caused any joint damage.

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It would be wonderful if new treatment becomes feasible.  I don't know how they can shut down "parts" of the immune system which, of course, they haven't been able to do.  As to the biologics (which are pushed at me constantly) . . . if one would rather have infections or other horrible diseases than RA, then one should take them.  I have chosen to deal with the enemy I already know.  (I don't say I'm right and never did.)

As to the exercise bike, that would severely jeopardize my back issues.  Last visit to the orthopedist, an x-ray showed four or five vertebrae that could fracture at any time.  Just the "exercise" of putting away groceries put me in bed for two days.  Carrying a slightly heavy bag or carrying a pitcher of water to water my plants has to be done very carefully with two hands and several trips back and forth to the sink exhausts me.  I could go on.

However, I'm stopping now . . . I'm even boring myself.

[LilacTree]

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@twinkies wrote:

I have severe psoriatic arthritis and M.C.T.D. I have severe crippling of my hands and fingers as well as other,I  do my own typing and do not have voice dragon , however I make many mistakes but often just keep going as to avoid frustration and just give up , i cannot make a fist with my left hand and cannot open my right hand as fingers are contracted , I had some surgery on hands several years ago and it helped , It was painful and i needed more but did not want to do it because the surgery flared up my arthritis so bad So i do type and have to keep going , Yes you can do it , Just do not give up

. cathy from ma.

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Please tell me what M.C.T.D. is, cathy.  Your disability is worse than mine, and you are very brave to push forward.  I will type as long as I can find a way to do so, and the suggestions here have been very helpful.  I won't give up.

Please have a pain-free day.

[LilacTree]

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@tansy wrote:

 There's a microphone attached to my iPad. And that's how I just type this note. Maybe that's an option for you @LilacTree.

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How does this work?  Do you talk into the mike and the iPad types for you?  I don't have a iPad and right now I can't afford one.  And I am still able to type so far.  Wearing the vinyl glove on my right hand has helped keep my fingers more in line, believe it or not.  I don't know how long that will last.

[LilacTree]

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@Trinity11 wrote:

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@LilacTree wrote:

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@Trinity11 wrote:

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@LilacTree wrote:

My right hand has just taken a turn for the worse.  I am now wearing a vinyl glove to try to keep my fingers together.  I can't use a brace when I type.  Rheumatologist said surgery is the only treatment. 

I researched yesterday and hand surgery in RA cases is not particularly successful.  Many scars and sometimes increased lack of dexterity.  It is my right hand (the deformity always appears first in the hand that's used most and I'm such a "righty" I doubt I will be able to type with just my left hand). I will discuss this with a surgeon, and in the meantime, the vinyl glove is helping.

Almost shed tears while researching and watching a video of hand surgery (really awful), but I didn't cry.  I never cry about my health, just about everything else.  I have been typing for over 60 years and using a computer for 36.  Touch screens won't do much for me because one still has to type, e.g., on this BB. 

This is not a surprise, I knew it would come.  I just hate that it's here.  I still feel lucky to be alive at this age and will just have to accept that life is going to be different in the coming months.

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I am so sorry Lilac Tree. I really wish there was something I could suggest. I was wondering if you were to start a biologic if this would regress? Sometimes the side effects of a drug are worth it making it easier to live and have less pain. I was just put on a steroid for my asthma ....I know I will gain weight and need new clothes but at least I will breath better. I also have a friend on a biologic for RA and she is doing a lot better. She can now go on walks and climb stairs. I see a huge difference in her endurance.

Just know that I am thinking of you...you've been a trooper and it cannot be easy for you.

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RA doc said it's too late for my hand.  Surgery is the only option.  Most of my physical disabilities are due to my cellophane back (osteoporosis).  Climbing stairs is almost impossible now unless I am being practically carried.  Walking is painful but my legs work, it's my spinal fractures and the gross fatigue that plague me the most.  I am so sick of the pain.

This hand thing is new (well, I mean worse), so I still don't know what I will do for that.  My groceries came and it took me almost two hours to put them away and I know I will pay for it tomorrow.  Just folding the bags was a chore. 

@Trinity11, your suggestions are wonderful and I appreciate your input so much . . . I just sometimes think it's too late for me.  But I'll get over it.  Today the groceries just did me in.  Going to rest a little and then make something to eat and end the day early.

I can't thank you and everyone here enough. 

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Lilac, there are drugs with excellent track records for pain relief. When you feel better I would really consider them if you think it is too late. Please don't give up.. Speak to your doctor...maybe he feels this needs surgery because you won't take a biologic? Have you asked if you took one of the newer drugs what percentage of pain would be relieved. It well may be worth it with a guarantee of less pain.

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The only pain relievers I take (very seldom) are Tylenol for Arthritis and I sometimes take Aleve for headaches.  I do not take these meds together, of course.  The RA makes my scalp extremely sore, so I don't know if that is what is causing the headaches too.

When I have severe pain, I lie down . . . that's the only thing that helps, as most of the really bad pain is in my back due to osteoporosis.  I don't know what's newer than biologics.

My RA doc is a woman who I doubt I will see again.  She is furious at me for refusing the biologics and makes no other suggestions for me.  When she saw my hand she simply said I'd have to have surgery and to see a surgeon.  She recommended no one. 

[LilacTree]

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@2blonde wrote:

@LilacTree  Oh, Lilac, I'm so sorry about this problem.  I know how much you love these boards and depend on being able to "talk" with all of us here.  You are such a beautiful person.  You never show any ill feelings toward anyone here.  It's amazing to me that you can remain so positive through all your physical difficulties.

I do think a tablet may be the best option for you, but I hate them too, so I know how you feel about that.  One thing I've learned as I've gotten older is no matter what challenges my body puts out there for me, I always manage to find a way around them.  I know you will also find a way to continue doing what you love........good luck to you!

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2blonde, I hope I responded to you for this very kind message.  I was just rereading this thread to make sure I have responded to everyone. 

I will find a way . . . the suggestions here have been very helpful, and some days are better than others.  I feel better today than I have the last two days. 

I do try to stay positive and always remember there are so many folks far, far worse off than me.

Thank you so much for your kind words.

[LilacTree]

Just wanted to thank you all for your very helpful suggestions and kindness toward me in this thread.

I am pushing Pedialyte and Gatorade and will continue to push water all day today.  I am feeling better and just wanted you to know that.

Thank you all so much!

[sydsgma1]

Ford, many (((hugs)) to you on this new development.  I know you will not take any of the disease modifying agents including biologics for your disease. And I know you are afraid of side effects. That being said, I met an 82 year old woman who has had rd for a long time and just started biologics in the adt few months. She said they have chNged her life from being in a wheel chair to now being much more independent.

my rheumatologist says these are the best treatment for ra...I know you will not reconsider .

i hope your hands resolves a little bit so you can function.