Thursday, May 31, 2012

Thoughts About My RA

By Laura Friday, March 13, 2009

 Thoughts About My RA

 

My hands hurt and my fingers ache,

For the life of me I just can't shake,

This feeling of fear clinging to me

Like dirty ole' bark on a tree.

It's fear of the unknown

And what's worse...

Fear of the known

 

My anxiety sometimes turns to panic,

I think and think until I become frantic

Sometimes I feel a weird kind of shame

I never wanted this sickly fame

This isn't the plan I had for my life

To live with the aches and pains and strife

 

How do I continue on each day

Trying to live my normal way?

It's all changed from what I had dreamed

This RA was not in my plans or schemes.

I want to close my eyes and pretend for a while

That I'm normal again, and can live with style.

 

So I hold out for hope today

Hope for an RA cure or a better way

Hope that I can live my life pain free

Enjoying most days, enjoying ME!

 

 Christ is my faith, hope and belief.

Science alone won't bring me relief,

So, i'll pray each day for God to heal,

To show a way, or a cure to reveal.

 

Methotrexate, anything good about this drug?
3/13/09 3:49pm

Thanks for the inspiring poem so well written and so true to what i feel as well. God Bless!

3/13/09 10:55pm

Thank you.  Sometimes writing it down is the only way to really cope.

3/13/09 4:50pm

Thanks Laura for that wonderful poem. Isn't is all the truth though. I hate having this disease. It makes me so tired sometimes I can't even function. What's worse is the unknown. You are so right. I wish the people who don't have it could understand what we go through. It's so hard. I can't always do the things I want to do with my teenage daughter. But we all do the best we can. Take care.Smile

3/13/09 11:00pm

It's true, most people just don't understand.  I have been referring people to this website so that they can hear what others have to say.  I think when they hear it from people other than myself that it sinks in as to how serious it really is.

Thanks for listening.

Good luck and God Bless!

3/13/09 5:24pm

That was so nicley put into words. Thank you

3/13/09 11:01pm

Thank youSmile

3/14/09 11:29am

Thank You For Your Words For They Are The Voice Of Those Who Suffer In Silence And Darkness! Thank You For Bringing It To Light, and Giving Us Strength To Fight!    

                                                P. L. U. R

                                                E  O  N  E

                                                A  V  I  S

                                                C  E  T  P

                                                E      Y  E

                                                           C

                                                           T

3/14/09 11:56pm

Thank You!

3/16/09 2:50pm

Hi Laura, I'm  sorry that you have such pain in hands and fingers, I nevee had a panic attack till a few weeks ago, it's what if  I can't get out  doors on my own, or just go and drive to visit friends, or family, things I I guessI take for granted, I have a few bouts with hands wher the pain draws the fingers right in to the palm of my hand it hasn't happened to oftenbut it's there, but my worse issie is my back with muscle spasms tht will go up the middle of my back and i just have to get up it doesn't matter where I am, If I'm driving a car, I have to just get out and walk and relax the muscles. like right now , it is in th e upper part of my back so I have got to go and get a pain pills , I hate taking muscle relaxers, there scarry I took them long time  some yrs back ended up in ER with a nose bleed I couldn't stop, so I am very careful not to take  to many. bearlover

3/16/09 3:05pm

Hi - it's interesting you mention panic attacks and muscle relaxers..... I had had a some panic attacks as a young adult, finally eventually got grounded and then when I started Enbrel I had one or two.  At least I knew what it was then.  I think it was all so new, but I had some idea of what to do. 

     I've been taking Flexeril (cyclobenzaprine) during the last week or so, just 5 mg and it's been a godsend - but then yesterday I had a cup of coffee (I usually just have one cup of green tea,much gentler, no real withdrawl) and it messed up my sleep, plus had some other tough stuff on my mind. Today I'm a wreck, dizzy this morning (probably the meds - took longer to act because of the coffee - I seem to take forever to metabolize stuff!)  Anyway, not to go on and on, but it's good to be in good company!

    Thanks to y'all.  Helps me feel not alone.

Ellen

3/16/09 3:30pm

Hi Ellen, I try to stay from caffeen at least 4hrs before I go to bed, I drink a lot of caffeine free tea and softdrinks,  I take Tramadol for pain killer, he had me on Predisone, but it didn't work for me so  he put me on the TRamadol,  the one thing that makes me leary of pain killers as I take Levotyhyroxine for Inactive  thyroid which I was born with, which is so surprising as  people are just finding problems with the thyroid and I've always had it. so I always askhow will this interact with  the thyroid, my brother is a pharmacist so I guess I automatically start asking questions, and I talk with my brother, but to get to the panic attack, I was trying to figure where did this come from I had never had done  well other thena test in school or haveing to do a book report in front of a class, I can't even explain only the fact I hope it doesn't happen to many times. Do You have the attacks veery often or once in awhile? I have a friend who lives up in Canada who has Fibromylascia, sugar, nerves, doctor tells her to lose weight then gives her a pill for nerves, which makes a person gain weight so it's kind of counter productive. I have to get up and move muscles are acting up. Take care. bearlover

3/16/09 4:21pm

Hi - I am so darn sensitive to caffeine that 1 cup of coffee at 7:30 in the morning interferes with my sleep.  I was able to do it for a year or two, then burned out and switched to green tea, which I like very much with honey.  But now I can't even do that without having a problem.  it's like, it switches my brain on, and then I can't turn it off, except with other drugs....

But at the same time, I seem to be having more energy now, and I can do without it about every other day, or so.

3/16/09 4:25pm

I forgot to address the panic attacks.  I don't get them regularly now. 

 

My last one was a couple years ago when I finished a course of Zithromax (z-pack) but since the sinus infection didn't seem to be over, I went back to the dr. office and was given a second antibiotic.  I know that Z-pack actually works for 10 days, but neither of us thought of that and I started the second antibiotic the same night, so in effect they overlapped.  It's one that can cause a heart arrhythmia (Q-T interval lengthening) if too much is taken with a drug in the same class.  My EKG was almost normal, and they said there was nothing wrong, but I think there was something in the drug that triggered the breathlessness, because I'd never had the hyperventilation before.  I would feel like I was about to lose total control, but I never had before.  Have not had any problem since (thank God!)  It was not the same kind of panic...I felt I couldn't get my breath.

Ellen

3/16/09 9:07pm

Sounds like you really have some painful issues too.    The pain in my fingers is not bad as long as I don't touch them or accidentally bump them and that is virtually impossible, so that's were my pain comes from.  If I sat still all day and never moved my hand it would be ok.  Typing is quite a trial for me, but I refuse to stop.

As far as panic attacks, I don't really have an attack, but if I allow myself to get on a pity party, then I can really scare myself.  I just have to refuse to think past today and believe that everything will work out.  

Thanks for your comments

3/17/09 11:44am

My mother has the same problem with her hands as they are worse then mine, as mine  started like the last year or so, but hers she and my father used to modern square d alright ance, as long as they were careful with taking hold of her hand it wfas alright. By the Way HAPPY SAINT PATRICKS DAY.

                                                                   bearlover

3/17/09 11:56am

I have taken Zithromax zpack, I used to get Bronchial asthma and I wouldgo through at least trow or three antibiotics,  well last year I started to get a cold and I went  right down to Doctors office and  the physcician  assitant put me on an antibiotic right off because they know what happens to me if I don't get it taken care from the start.

   I love green tea, and I put honey in it helps with colds, This winter I don't know what it was if it was siniuses or what but  it felt like someone was putting pressure on the top of my head, I went to see Michelle and she told me to take Corideden D, It's fo rHigh BP, I would have pain in my neck and down back of my head. I haven't had it in a while, I guess it was my sinuses  but never had  them affect me the way it did that time. HAPPY SAINT PATRICKS  DAY bearlover

3/17/09 12:34pm

My right hand was like that when I was diagnosed, but after getting Remicade, and then Enbrel, it is pretty good most of the time.  I can tell when it's time for another shot though!  Or if I use my hand a lot (stapling, sawing, piano...).  My wrist is another story ... serious damage.  I wear a splint almost all the time and that helps.

 

One support that has not been mentioned is the elastic Futuro glove that provides mild compression support and warmth - it comes without fingers.  I know compression sounds like it might be painful, but for some people, it really helps.  It helped my hand, but was too much pressure on my swollen wrist...

 

Ellen

3/17/09 1:16pm

I have used the gloves and they actuallly help because between scrapbooking, crocheting mittens and afghans,  you began to feel the affects of  your hands and fingers being in a position for a  period of time and in fact I had  crocheted 7 broomstick Lace afghans  before Christmas in fact I had finished the border on the last childs afghan at 2that morning so needless to say I haven't crocheted any afghans or mittens since Christmas, as when it gets warmer weather I'm outside, I  probably won't be on thje computer as much come nice weather, check  email and  done for rest of day,  Itry not to be on computer to long either as my neckstarts to bother along with the hands. Have a Good Day bearlover

3/17/09 1:53pm

That's one of the 'favorite pastimes' that I can no longer indulge in, since my wrist locked up.  For several years the Enbrel & Celebrex kept it working, but then the erosion caused the scaphoid to crack, and it's been toast since.  That's why I was looking into surgery, but have decided to wait, because (miracle of miracles) I can still play a little piano and other things that can be done with a straight wrist, though I can't stretch as large an interval...or be as flexible.  I will be playing hymns as a sub this coming Sunday at a local church (first time in a couple years).  But not the fancy stuff!

 

I did talk with a woman in my dr's office that she had been able to start knitting again after Remicade!

Ellen

3/17/09 2:20pm

Awww.....I'm glad your parents were able to continue to do fun things like that. :>0

Happy St. Patty's Day to you too!  What a beautiful day it is.  At least here (Flint MI)

3/17/09 2:43pm

Coricidin D is a cold med with decongestant.  The HBP part says it won't elevate your blood pressure like a lot of decongestants do, so it is good for people with colds who have high blood pressure.  (Decongestants like sudafed and phenylephrine raise blood pressure).

3/17/09 2:56pm

Where do I get these gloves.  I think this would be great for my hands!

3/17/09 4:17pm

Cool It is so bright  I need sun glasses today, this won't belong because I have to go to clothes line and get a hat and pair of my pants and  a small quilted quilt that my mothermade for me, but anyway,  to where I got the  gloves, I get a book called Home Sew  and they are in there, there called Hand aids, The  address Is Home-Sew Inc. P.o.box4099 Bethlehem,PA 18018-0099 the telephone numbeer is 1-800-344-4739,  I hope this helps. I n fact I have got to get a pair they arfe made of nylon spandex fit small womens through large men's S- 2 1/2" across knuckles M-3"'across knuckles,L-3-3/4 ''or xL-4-3/8across knuckles the order no is PH63-Glovespg 29 or fax 610-867-9717 Hope this helps you in any way.bearlover

3/17/09 4:24pm

Hi ! after I looked  at number for telephone it is suppose to be 1-800-344-4739 after I looked at number  again and hit the wrong number, for Home Sew Inc. sorry about that, good thing I looked again you wouldn't have been able to get a hold of them. bear lover

3/18/09 8:44am

Thanks, that is awesome!  I'm going to call today!

3/18/09 9:01am

YellSmile I used  the two signs the first one because I still haven't figured out how get my computer  back to what it was before they stuck the microsoft  files and  etc in corner so I can't print directly from the screen, I am not alone other friends of mine have got the same problems like we need something else in the world to complicate  our lives, wish they would leave things alone my back starts spazing, thenI just have to leave.

       The second as you can see is happy that I hope this helps you in fact I have got an order for a pair for my self as my knuckles got bigger so I have to order another pair, I find they work really well I ordered vallum for my scrapbooking, I have  to tell you I love Home Sew Catalog, they have  alot of products, again I hope you find that the gloves work for you.bearlover

3/18/09 11:25am

I know what you mean about computer problems.  I'm at work right now, but my laptop at home gives me a lot of problems.  What a pain, but a modern convenience/inconvenience that I can't live without. Go figure......

Thankyou so much for all your help!

Have a great day!

3/19/09 10:12pm

Great poem, very well put.  I feel the same way; trying to take care of our 5yr. old & almost 4yr. old can be such a struggle.

3/20/09 8:37am

Thank you.  You really have your hands full with little one and this disease.  Best wishes to you & God Bless!

3/20/09 9:15am

Thank you for the blessing~~they are much needed.  Just wondering, do you do any type of relaxation techniques to help relieve the pain and anxiety? I need to change my exercise routine for my "Out of Control" days (days where the RA pain makes me cry & I get anxiety which makes me grouchy).

3/20/09 12:12pm

You're welcome!   I am one of those "silent-sufferers"  I keep to myself mostly.  sometimes cry a little, but try not to get too grouchy.  I don't do a lot of relaxation exercises, however I would love to learn Yoga.   I know that exercise is extremely important, moreso now than ever before.  I work out with a friend 3 times a week and try to do a little at home on the off days, like treadmill or somehting like that.  Most days, I am so tired that I can't bring myself to get off the couch once I get home from work. 

Good Luck to you!

3/20/09 1:00pm

Maybe it would be good for me to learn Yoga too.  I'm the same way about crying, I don't let my kids or hubby see me but my hubby knows me to well & so does our 15yr old so they will automatically take over w/ things even though I tell them I'm fine.  Try to have a great day & I'm sure we'll talk again soon.

Blessings to you~~Kellie

3/20/09 1:00pm

Maybe it would be good for me to learn Yoga too.  I'm the same way about crying, I don't let my kids or hubby see me but my hubby knows me to well & so does our 15yr old so they will automatically take over w/ things even though I tell them I'm fine.  Try to have a great day & I'm sure we'll talk again soon.

Blessings to you~~Kellie

Anonymous
chumpnonnie
3/19/09 11:14pm

what a neat way to express your feelings. I enjoyed it. Pam

3/20/09 8:39am

Thank you for reading.  God Bless!

Anonymous
Hattie Boyd
3/20/09 2:47pm

Thank you for the poem.  It really brightened my day.

Hattie

3/20/09 3:53pm

Thank you and glad it brightened your day!

Have a great one!

God Bless!

3/20/09 12:28am

Amen, Sister!! Amen, Amen, Amen!!!  Smile

 

Blessings,

Kathy

3/20/09 8:40am

Thank you Kathy!  Blessings to you!

3/31/09 10:15pm

I love the poem!  I think we are kindred spirits, in a way.   Sounds and feels exactly as I have.  Don't give up hope.  I was very depressed in the beginning.  I've only had this two years now but I'm really coming to grips with it now.  My meds keep it mostly in check.  Yes, still flare-ups but whenever I'm in pain, I just think of how bad it was before I even knew what it was and why I cried in agony trying to go through the hour long battle to get dressed in the morning.  For now, I am so grateful that I can still run and play with my kids.  So, I can't rock climb or do the monkey bars.  But so long as my foots not flared, I can still (running) beat my speedy 7 year old on a bike (most of the time:)  Sorry, now I've gone on.  Please, just keep on believing.  He will provide.

God Bless.

4/ 1/09 3:45pm

Thank you for sharing.  I have my days where I want to have my pity party, but for the most part I do ok.  I try to stay positive and upbeat.

I've actually been having these symptoms for about 4 years and the last year has progressed quickly.  4 years ago I was diagnosed with Anklosing Spondylitis.  Then is the past year RA.   Wishing you the best.

4/ 1/09 7:51pm

This poem is truly touching and I can relate completely as if I wrote it myseslf.  Thank you  for sharing.  I think it is true that no one truly understands RA except those who suffer from it.  I so wish I could go back to normal.  These days I just wish to be able to funtion and maybe take my daughter on a bike ride one day.  I don't ask to be able to climb mountains(though I used to enjoy that and do it without much effort) I just want to feel good again.  Again thank you. 

4/ 1/09 9:37pm

Thank you.  I'm so glad to know that there's someone else who understands and knows what I'm feeling.  I do have hope though, I have read so many stories from people on this site who found the right combination of meds and are now doing great.  I really believe (and you gotta believe) that I am going to get back to (or close to) normal.   I am sure you will too.  Did you say which meds you are on?  My doc just started me on Methotrexate.  I start next week.  Right now I'm trying to get over a cold.   I'm a little afraid of the Meth since I've heard so much bad stuff about it.

Talk to you soon

Ask a Question

Get answers from our experts and community members.

Btn_ask_question_med
View all questions (3513) >
By Laura— Last Modified: 09/21/10, First Published: 03/13/09