Re: Thank you for the welcome

August 21, 2004

(I had to delete the text I am responding to, sorry)

Please first know that my case is a little different. I had no insurance, I was

too sick AT FIRST to work...and I had no income with 3 kids, 2 disabled and a

husband with advanced cancer. anyone can tell you stress makes most illnesses

worse. I could not get medicaide for various reasons.... and I could not get

medical help. Tis increased my stress and it allowed this illness to hit me

even harder. It also affected me mentally emotionally, psychologically. I am

bipolar and my " good days " are way way up there, I fly around with no sleep

doing everything.altho my " bad " days are dark as the depths of hell. I was

accustomed to taking care of EVERYTHING. PT for my kids, car mainataince, the

yard, the house, the bills and my 2 jobs. When my wrists and knees and fingers

and toes began to hurt so bad and swell- I was totally blown away. WHen I could

not do some of the things I had always done, I panicked and freaked out and this

made the RA worse. I feared losing my kids - I feared starving to death, all of

us, I feared landing in the streets. The RA and the bipolar fed off each other.

Keep something in mind. Most people go to the doctor EXPECTING medications. If

a person is more interested in alternatives- they usually find an alternative

practitioner. I cannot tell you how many people will comment that a doctor is

not doing anything - if they did not leave with a Rx. People see the doc with a

runny nose and expect an antibitoic. People bring children in with an earache

and expect an antibiotic. Truth is yes, drugs ARE often over prescribed.

Patients encourage this sometimes. Another truth is often times you get one med

and do need another possibly to overcome negative side effects from the first

one.

RA can be scary---- and it can be disableing- but thats the key word - it CAN

be. Keep reading here and you will read many people who still can go about

their daily lives- some are using alternatives, some have mild disease and for

many the drugs offered by the docs help them do that.

My friend has melanoma stage IV. It is most recently in her spine. The day her

doc found that, he offered her some very powerful pain meds. SHe refused to

even take the Rx from the doc, not even to think it over. She told him she was

offended he thought she was a " wimp " and could not handle pain. He offered her

steroids to reduce swelling from the spots on her spine. SHe refused those due

to negative side effects.

12 hours later, she wound up in the hospital on IV pain meds for 2 weeks. The

IV pain meds created a whole new set of complications that did endanger her

life. She wound up on IV morphine and IV steroids, which made her psychotic,

and necessitated pstch meds as well, which then caused urine retention. SHe had

to get a catheter, which after her cancer chemotherapy reduced her immune system

and she got a urinary infection. Had she taken the pills for pain from the

doctor when he tried to give them to her- it is very likely she would not have

had all the rest happen. Pain is MUCH easier to keep under control if you get a

handle on it BEFORE it gets out of control. SHe has maybe a couple months tops

left with her children and husband. SHe was supposed to be going the next day

to see the ocean for her first time. She was also supposed to see her brother

before he left for Iraq. Instead we had to share her with the hospital and

pyschosis. Just because she did not want to take the Rx for pain meds. It had

hurt her feelings.

I am not saying hurry and run and take MTX or enbrel or anything. I am asking

you to go to informative places to learn just what RA is and what it can be- and

also to go learn about the meds and other treatemnts available to treat it. I

am not asking you to depend on ANY doctor and only take his word for anything.

I am saying go be an informed patient and educate yourself so you can make

informed decisions with full knowledge. I am asking you to be able to have a 2

sided conversation with your healthcare providors.

August 21, 2004

So all of this is pretty normal? I was beginning to think I was some sort of

freak or something with the way this doctor and his nurse were acting. Good to

know that this is normal.

So you can have damage and feel nothing? What kind of damage?

Yes they told me I had to come in person with ID and sign some paperwork and it

would take 2-4 weeks to get a copy of my records and it would be $1 a page

unless I wanted it sent to another doctor.

dreamer_plus <dreamer_plus@...> wrote:

Yes you are entitled to your records, but yes they can charge you for them.

You might have to put your request in writing.

He probably XRayed your feet to see if they are damaged and I believe damage CAN

occur even if YOU do not feel it. Sounds like he was being thorough.

- In , catherine p <painpaingoaway2@y...> wrote:

> I will have to reach the nurse. I called the clinic today as they have

weekend sick hours. I asked the nurse that took my call. She stated I needed

to come in and sign some paperwork and they would forward the results to the

doctor of my choice but they would not give me a copy of my chart. So I told

her I was told I was entitled to a copy of my chart. She told me I would have

to pay a $1 a page if I " really " wanted it.

>

> He didn't really discuss the x-rays. He just said there was nothing broken in

my wrist. We didn't discuss my feet. Which I have no clue why he x-rayed my

feet when there is nothing wrong with them. As far as bone erosion he did not

say anything like that. Can you please explain more about what this is? Sorry

I am not up or familiar with all this medical stuff.

>

> Thanks

>

> a54 <a54@s...> wrote:

> ,

> You can request a copy of your blood tests and find out exactly what is off

> and what it means. You said that the test he was concerned about was the

> test for inflammation. That test can be off for many reasons. RA cannot be

> diagnosed with just blood tests. What were the results of your x-rays? Was

> there any erosion of bone?

> a

>

> > Just my wrist was hurt. When it took nearly six months to get better the

doc

> > got worried cause he said it should not be swelling and turning red like

that.

> > So he did some blood tests and said some values were off. I do not have

> > copies. I never thought to ask for them. I started taking aleve, even

though

> > I am not suppose to cause of my stomach problems history and that seem to

> > help. My doc gave me some drug like aleve but stronger and it really didn't

> > help much. It finally went away on its own.

> >

> > Then he asked me if I had any other joint problems. Well my knees have

always

> > been bad. Swelling and painful from time to time. He said that was not

> > normal. Well since its been that way since I was a teenager I really didn't

> > think much of it. I have injuried my knees falling and twisting them in the

> > past.

> >

> > So after all the blood work he called me and said I needed to see the

> > specialist right away and got me an appointment. I went and I was not

> > impressed. I more like terrified and very upset with this doctor.

> >

> > a54 <a54@s...> wrote:

> > If your problem is from an injury that has healed and you no longer have any

> > problems, how did your doctor diagnose you with RA? Did he do blood tests

> > and do you have copies of them? Do any other joints hurt?

> > a

> >

> >> Wow I had no idea this disease caused such suffering. I have not

experienced

> >> any bad pain or anything like that. Its more annoying than anything else.

> >> its amazing as I read this post that people are really this sick. Wow this

> >> group is full of some really sick people!!! I feel really sorry for all of

> >> you suffering from this.

> >>

> >> I have not had any problems with doing anything I want. It was a fall and

> >> wrist injury that sent me to the doctor cause it seem to never heal,

staying

> >> red, swollen, stiff and tender. My doc gave me some pills like aleve but

> >> strong that was suppose to help and it didn't. finally after a few weeks

it

> >> went away on its own. Its been feeling great now. That is why I don't

> >> understand the doctors reaction to put me on this butt load of drugs!

> >>

> >> I am not one that is good about taking drugs daily. I can't even get

through

> >> a thw hole bottle of antibiotics when I had a lung infection. My doc

> >> whines..I tell him I hate taking drugs. I have been healthy for the most

> >> part

> >> all my life so no real need.

> >>

> >> I feel so sorry for you with small children. I can't even imagine what you

> >> are going through.

> >>

> >> dreamer_plus <dreamer_plus@w...> wrote:

> >> I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

> >> insurance and could NOT afford treatment for quite awhile. I would have

> >> literally sold my life for relief.

> >> It is wise to weigh out the pros and cons of all meds a doc gives you-

> >> discuss

> >> options and choices, sure. That is a good thing to do---BUT- while I did

not

> >> like the potential side effects of mtx- I was NOT living without it. I was

a

> >> screaming crying blob in my bed for 2 years. I literally could NOT leave

my

> >> bed, never stopped screaming- and would literally wet myself etc cuz I

could

> >> NOT handle the pain to get to the bathroom. I prayed to die.

> >> SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL

> >> the

> >> driving), toured DC and NYC and am able to once again live. I no longer

wish

> >> to die. My children once again have a mother.

> >> The blood tests are to make sure the meds are not doing damage and to

monitor

> >> what is going on in your body. The XRays are to check your bones and

joints

> >> for damage from the illness. From my XRays they found me full of bone loss

> >> in

> >> many joints and tips of bones, and also full of calcium deposits in other

> >> joints.

> >> The choice to medicate is an individual one, you do have the right to

refuse

> >> treatment but I would suppose if you choose not to medicate, then your doc

> >> might wonder why you came in for help? The doc seems to be offering you

> >> typical help.

> >> Sure, I am only 45 years old, and NO I do not like having these meds or

using

> >> a scooter to take my kids to the zoo or feeling this crummy all the time.

I

> >> do not like the negative side effects, but---it sure beats how I was

living.

> >> It was AWFUL to look my 9 year old in the face with tears running down my

> >> cheeks and tell him NO sorry dude, I can't take you to the park, I cannot

> >> even

> >> get out of bed, but hey little guy since you are here, would you hold that

> >> glass of water to my mouth cuz my wrists are too painful for me to do it

> >> myself. It was so horrible to have to ask my 13 year old to help me pull

up

> >> my pants and underwear when I did make it to th ebathroom cuz the movement

> >> made me scream and nearly pass out. I am GLAD to have the mtx, even with

its

> >> possible negative side effects.

> >>

> >> - In , " Dennis W " <betnden@a...> wrote:

> >>> , you haven't suffered long enough, pure and simple. I think

you're

> >>> jumping the gun in saying you don't want to take prednesone, and that you

> >>> don't want to even see the doctor. If your diet is not followed, you can

> >>> 'blimp' out. I gained 15 pounds after starting treatment, but part of it

was

> >>> from not being able to move or exercise. My advice is: Don't say NEVER,

> >>> you'll likely eat those words if your RA is aggressive enough. Mine even

> >>> attacked the pseudo-joints where the ribs tie to the breastbone. The only

> >>> area that hasn't suffered yet is my jaw bones. I still wish I could get

> >>> enough relief. It depends on your perspective.

> >>>

> >>> Dennis

> >>>

> >>> [ ] Thank you for the welcome

> >>>

> >>>> Thank you to all for the welcome. I don't know much about the

> >>>> medications. So excuse my ignorance about all the names everyone is

> >>>> taking. I tried Arava and it really did nothing. My doc wants me to

> >>>> start on Methotrexate injections and enbrel injections. I have not

> >>>> heard many good things about methotrexate, so I don't think I will

> >>>> take this drug. My insurance does not pay for either of these

> >>>> medications anyway. They will pay for insulin but not for these

> >>>> meds. They claim they are too expensive.

> >>>>

> >>>> Enbrel I have mixed feelings about. My pain is not too bad. I have

> >>>> good and bad days. I am not even sure this doctor is correct with my

> >>>> diagnosis. Is there a test for RA? I fell and hurt my wrist and it

> >>>> started giving me lots of trouble then my doc claimed it might be RA

> >>>> cause some level was real high. He said it has something to do with

> >>>> swelling. Anyway...its all mumbo jumbo to me.

> >>>>

> >>>> Besides those drugs, he also gave me a drug called bextra and

> >>>> prednisone. I have not taken either. I was told prednisone will

> >>>> ruin your bones and make you fat, hyper and always hungry. I do not

> >>>> want any drug that makes me hungry or fat!!!!

> >>>>

> >>>> I take aleve for pain and benadryl if I need to sleep. I hate taking

> >>>> any sort of medication.

> >>>>

> >>>> As I read through the old post so many here are on tons of drugs.

> >>>> Wow how do you do it??? How do you afford it????I do not want to

> >>>> become dependent on a ton of meds like you see these old ladies at

> >>>> the pharmacy for a grocery sack of meds!!!

> >>>>

> >>>> I don't know anyone else with RA nor does anyone in my family have it!

> >>>>

> >>>> Did anyone elses doctor x-ray your hands, feet, hips and back? I

> >>>> have no clue why my doc did this. He said he needed to see

> >>>> something. If he keeps xraying me like this I am going to start

> >>>> glowing in the dark! He also seems to like to order a ton of blood

> >>>> tests. I would mind if the lab techs didn't stick me 3-4 times to

> >>>> get blood. The last time I went I told them they get one try and

> >>>> thats it. If you miss, too bad you get no blood. Do you have blood

> >>>> tests all the time?

> >>>>

> >>>> This is just so time consuming and expensive. I hate going to the

> >>>> doctor. My doc got mad cause I cancelled a few of my appnts. I just

> >>>> don't see him really doing anything and I am not taking these drugs

> >>>> he prescribes. I plan to take to my family doc at my next visit and

> >>>> see if we can stop all these appnts with this specialists.

> >>>>

> >>

August 21, 2004

dreamer,

I am very afraid of what happened to your friend. If I take one drug, I will

need another to counter act the side effects or problems caused. I tend to go

the route unless its really life threatening, I will take my chances without the

drugs and see how it goes first.

I have heard many bad things about pain and predisone drugs. I am sure they

have there place too.

I hope your friend is doing better and will be able to go to the ocean and other

places soon.