Re: Hello, new to list and to RA

[Guest guest]

Welcome Randy,

I feel badly when I hear of someone so young having so many physical

problems. I was Dx with Crohn's when in my 30s, but it went dormant until it and

RA reared their ugly heads when I was 64.(2 years ago) I'm grateful for the

pain-free years I had.

I had been under control with Remicade infusions and daily Imuran and

Prednisone pills. Then last week I got bronchitis and had to miss my infusion.

The pain is slowly coming back and reminding me of what life could be like

without miracle drugs. It's again moving from my hands to my feet, then

shoulders, hip and knees. I'm walking very slowly and feeling fatigue.

I think you will find a good home here. I would not have been as aggressive

about seeking care for my sickness last week had it not been for this

list.

dd

[Guest guest]

Hi Randy,

 

Welcome to the group!  I'm so sorry to hear that are having all these

problems.  Sometimes it does get overwhelming.  We've all been there and

understand.  You are not complaining and I know people here are always willing

to listen.  It's so good to vent to the group.  You will always find a

compassionate ear and receive good suggestions from the wonderful folks here. 

 

I know I've had my bad days but the one good thing about RA is that you can

count on it to change.  So there will always be good days coming.  Try to hang

in there on the bad ones.  You sound like you have a great attitude.  It is

frustrating dealing w/the pain and mobility issues.  I think it's normal to get

depressed over it.  But then something good happens and you know that you'll be

fine.  I always try to have gratitude for the little things...the kindness of a

stranger, the smile of a child, the warmth of the sun or the beauty of a

flower. 

 

I am sending you light and blessings.  May the day bring you something to smile

about.

 

Sheryl

From: Randy <rjgang10@...>

Subject: [ ] Hello, new to list and to RA

Date: Sunday, May 9, 2010, 2:01 AM

 

    Hi all my name is Randy, I am a 43 yr old male w/multiple dxes, at 17 yrs

old after an X-ray of my spine I was told that I had arthritis of a 40 yr old.

My back has been getting progressively worse over the years. June 2 yrs ago I

had surgery on my neck 2 levels and four titanium plates. I have stenosis, bone

spurs, bulging and herniated disks, not to mention impinged nerves in my spine.

I have had arthritis in many other joints also. In Feb 2009 I had surgery on my

left shoulder and was disabled from any kind of physical kind of work or

activity. My recovery from the last surgery has been very slow, and I was having

a lot of pain in most of my joints and was constantly fatigued. I went to see a

rummy last summer and was dxed with RA, OA, and possably Lupus (I had 2 markers

for Lupus), wow! It was a bit more than I was ready for, I kinda expected RA

being that it runs in my family. I am currently on methatrexate 80units inj. ,

plaquinel 40mg,

prednisone 2.5mg, folic acid 10mg.and Oxycodone 10/325mg. it seemed to help

allot for a while but I'm not sure it is working as well any more, dr.

increases methatrexate every time I go in, I do trust him and I believe he is

good.

       I try to live a positive life and am going to U of U for

retraining but sometimes the pain and lack of mobility gets to me and I get a

little depressed. I feel like I just need to be able to talk to others going

through the same thing and maybe gain a little bit of hope and a little bit of

info that might help, I've heard of biologic but they are so expensive that I

can't afford them. I get so tired of pain and just don't know what to do. I

have been very active and now I try but I just can't do the things I used to.

It is embarrassing to have my son put my socks & shoes on for me, altho he don't

mind. I hope you don't think that I am complaining too much, today was a bad day

for me but I do have good days too. 

                                        

Randy

[Guest guest]

Randy,

Some of the companies that make the biologic meds will help people pay

for them. You might investigate that possibility. I am on Enbrel, and

it works very well to keep my RA under control. Look here for

information on help they will give. One thing they will do for

eligible patients is to provide Enbrel for six months at no cost.

http://www.enbrel.com/pay-for-ENBREL.jspx

Sue

On May 9, 2010, at 3:01 AM, Randy wrote:

> I've heard of biologic but they are so expensive that I can't

> afford them. I get so tired of pain and just don't know what to do.

> I have been very active and now I try but I just can't do the things

> I used to. It is embarrassing to have my son put my socks & shoes on

> for me, altho he don't mind. I hope you don't think that I am

> complaining too much, today was a bad day for me but I do have good

> days too.

>

> Randy

[Guest guest]

Hi Randy.  Welcome to our wonderful group of caring, loving people.  I was

very sad to read about all your diagnose's, and that you are so young to have to

deal with all that.

 

I know exactly how you feel when you have to ask for help dressing or with other

things.  I have had lots and lots of Physical Therapy in the last 6 years.  I

would like to suggest to you an item that I have found very helpful.  I got

this while doing my P.T.  It is a plastic help to put on your own socks, and it

really works great.  You put your sock on the plastic, then you slip your foot

into it, and pull the string, and your sock is on!  Very simple thing to do

with this.  I also have from P.T. a very large, metal shoe horn.  I put the

shoe horn in my shoe, rest my heel in front of it, and push my foot in.  It is

very strong, and you can really push the heel of your foot into it.  In your

foot goes, effortlessly.  I also got a pair of elastic shoe laces, so I can

just use the shoe horn, and put my foot in withour undoing the laces.  Very

helpful.  I also got a reacher, so I could get my clothes out of the drawer,

and put on my bed so I

could dress myself easily,  I also use my reacher to pick things up from the

floor, or get something out of a tall cabinet.  All of these P.T. items has

made my life so much easier, and I can remain independent.  I don't have to ask

for help, which makes me feel good.

 

Perhaps your Rheumy can write a RX for some P.T.  If you have ins., they pay

for it, as well as any item you need to make your life easier.  Last year I

fell when my feet were badly flaring with R.A., and broke my foot and

shoulder.  Before that, I had my right knee totally replaced, then I fell and

broke my hip, resulting in a total hip replacement.  Last year I had my left

knee totally replaced.  As you can see, that is lots of time taking P.T.  I

think you would so benefit from P.T. I know you want to be more independent, so

did I.

 

Having a positive attitude is such a good thing.  Having R.A. and having to

deal with horrible flares, I have changed my life and try to work around it. 

When I get up each day, I make a mental plan of what I want to do.  I try to

get most of it done, if not, there is always tomorrow.  When my R.A. is flaring

and I am bed ridden, I stay in bed and read or watch t.v.  My feet were hit the

hardest, and when they are in bad pain, I can hardly stand on them, or even

walk.  Those are my down days.  I have to give into the pain.

 

Having the best Rheumy for yourself is a great beginning.  I love mine so much

as she is a very smart, caring, compassionate Dr.  I am very blessed to have

her.  She takes such good care of me.

 

I too get depressed sometime, but I try to think better thoughts.  Not easy

sometimes.  I am going through a very painful and stressful divorce, and try to

deal with the loss of my 30 year marriage.  I just turned 70, and it is hard to

start a new life at this age.  But in life, we never know what we will have to

deal with.  I have to take one day at a time, as that is all I can really

handle.

I finally had to seek professional help, as I could not handle it anymore

alone.  I am glad I did that for myself.  I am by nature a very happy, out

going sensitive person.  I was crying 24/7 and could not stop.  I knew I could

not contiue doing this, as my drs. were so afraid that the stress would bring my

RA flaring with rage, which it did 2 weeks ago.  I was totally pain free for

1  1/2 years.

 

All my friends here are the best in the world.  Everyone knows what you are

dealing with each and every day with RA.  They all care, will listen and not

judge you, let you vent, cry, and every other emotion we have can be aired

here.  They are the greatest bunch of people I have ever met, and I would be

lost without them.  The best thing you did for yourself, was by joining out

group.  It will be your salvation.  I have been a member for, I think, 5 years

now.  Thank God I found them!

 

I hope you can find the things to make your life easier, and that you have many

pain free days ahead.  Take care, and rest as much as you can.  Remember, we

all care here.

 

Hugs,

 

Barbara