Ok... I would like to state that I am not in any ways suffering. I like to call it dealing. Suffering is when I cannot deal. I have a whole different way of how I deal with my J/RA. I was not as lucky as Katie to get on good meds when I was a kid. I was given baby asprin, that was the treatment back when I was DXed. Seems it came a long ways after katie was DXed.
I am not in constant pain. Dude if I was I would be complaining a whole lot more, believe me. Now one time I posted that my pain was driving me crazy to the point of where I wanted to bang my head on the wall to knock myself out. At that time I did not have LorTabs or Vicoden, I only had IBU. I did break down and call my RD for LorTabs and I did take them.
I have pain, but it is managable to a point. Mostly when the pred starts to wear off at night before I take my next dose. Or when it is going to rain or starts to get cold.
It is not like I am not sleeping well because of pain. The problem I have mostly right now is the stiffness and swelling. Pred takes care of my not feeling most of what I would be feeling if I was not on it. I am greatful for pred to get me thru this until I can get back on something that will do some good.
ya'll should know me by now. I am one of those people who does what their dr tells them to do and never question it. I might talk about not going in for the Remicade, but that is just a bunch of smack talk.
I cannot be assertive, because that is not my style. I am actually a person that keeps to herself, until I get to know someone. I do not like to be a pain in the ass, I do not like to tell people what to do, I do not like to stand up for myself nor do I like confrontation. I like to let things happen on their own. Just the way I am.
No need in telling me to be assertive in my health. Heck I have made more trips to Dr's within the last 4 months that I have since I was a kid. I feel I am getting to the point of being more for my health, but slowly and at my own pace. You ever hear the saying you can lead a horse to water, but you cant make it drink?
Now take my pred from me and I will be in needless suffering. I do understand that the pred only masks the problems, but ya know... if that is all I have that is all I have.
We were only DXed 4 years apart, I don't think that has anything to do with it. MTX was around and used when you and I were little, maybe it was something you should have been put on. But you know, that's all in the past now and totally irrelevant. If you're happy with the way that you're dealing with things, then why do you complain about the meds and your doctors? I just don't understand I guess.Complain about meds... well 1) because I do not like how they make me feel. Sleepy and because my body does not adjust to them. 2) because I forget to take them. Out of sight out of mind. 3) because I do feel they are doing harm to my body. Sometimes more harm than the J/RA itself. I was on celebrex for months and I kept having pain in my right side like my liver was hurting, I stopped taking it to see if it was that, and the pain has yet to return.
Complain about dr.... 1) because they always find a way to stick me with a needle. 2) because I just am not all about complaining about my aches & pains. I only go to a dr if I am really sick or the pain is not tolerable. 3) because I just do not like talking face to face to a stranger about what ails me.
As for the meds... no... they did not offer nothing when I was DXed in the form of MTX. It was baby asprin and for years my mom took me to a dr to get something more and that is when they gave me the half casts. I lived in california at the time and was going to one of the best children hospitals at that time in LA.
Well MTX was approved in 1988, so someone lied to you. Sorry for it. You probably could have had a better childhood. But at this point, that's neither here nor there.
You know what, excuses are like assholes everyone has one.
Sorry... had to say it, I told hubby ya'll would say I made excuses.
You do not know how bad I forget stuff all the time. I can forget things within a few seconds of being told or remembering. Just ask my husband. I am always in a fog because of the pred. Take that as an excuse if you want, but it is the truth.
Oh so now we are bringing the kids in on it again. Yeah... I have something for that too. I have to WANT to do this for myself, no one else but myself. Sure might sound self-centered, but... that is how it is. I am not a self-centered person, never have never will, was just cutting it off before you got there.
You can see them all as excuses, but for me they are my reality, and I can chose to be in denial, or whatever. I do take my meds. I forget once... wow! now I am labeled as refusing to take my meds. Look I have no problem take the meds, it is the remember them part that I have a problem with. I do not even take my pred until I remember why I am soo swelled and hurting.
Long term pred messes with your mind. You would not know that as you have never been on it long term IE 3 years now. Yeah... I at one time would remember to take Humira, even though I would freak when hubby got ready to inject me. I still took it.
As for taking Amitriptilin, IBU, vicoden, or robaxin those do not benefit my RA. So, if I forget to take them, no harm to the ol RA. Now I can see if I was forgetting to take my pred, sure... you could say I was negelecting my RA. But I am taking every RA med I have been RXed.
But they ARE excuses Joonie. And all of us have some degree of brain fog, but there are ways to combat that. So yeah, maybe you are in denial, if that's what you want to call it.No freaking DUH! I know it can kill me and so can the meds I am taking. It is really a lose, lose situation if you look at it. But maybe I am the only one who sees it like that because I am so negative. Actually it is just reality. Only sure thing in life is death. Some go before their time and others linger around and just cannot be killed off.
No duh about me acting a little different! I was on Humira 6 months ago and doing quite well. Now I am back to not doing so well. Only on pred and me only on pred does something to my mind. Now when I am on Humira along with my pred, pred does not effect my mind as much. Plus there also might be a little of the inflammation that is messing with my mind.
I am not off Humira by choice. I am off of it because it causes me to have bladder infections. I am taking my Humira now, just not every week like before, I am taking it every 2 weeks, like I started out with.
How the hell am I unwell? Mentally? Sure it is the pred. I am not depressed, my GP said she did not feel I was depressed, just sick with reactivated mono. I am HAPPY! See the smile on my face? If I was depressed do you really think I would be posting on this board? Hell NO! I would be laying in my bed sleeping my life away. I know when I am depressed. And this is not it!
Methotrexate has never been approved for use in children for rheumatoid arthritis. True, in 1988 it was approved for adult use in RA, and true, physicians are free to prescribe as they see fit, but I suspect that 20 years ago there weren't too many physicians willing to give it to children (or too many insurance companies or government health programs willing to pay for an offlabel use in children).My brain fog is so bad I've actually thought about asking my doctor for Aricept! Hahahaa!! No, I have been having memory problems, to the point that I frustrate my hubby and that my mom sees I have a hard time remembering stuff. MTX has always been offered to me, since I was about 5.
Yeah... I think to myself when I see that commercial that Aricept my benefit me, but I also thought Viva Viagra would benefit me too
Viva Viagra... viva viagra...
Oh have ya'll seen the new viva viagra commercial? It totally SUCKS! I liked the other one better. Just something about 2 people doing the tango for a viagra commercial just did not seem right.
There you go with that viva viagra song again! I'm gonna be humming it in my sleep now! Yeah, and you were also on military insurance. I was on what is equivulent to medicaid my whole life. and I know when I was on that, as a kid I could not go to a dentist, because they did not cover it. Good thing I had good teeth. [QUOTE=arriscolwell]MTX has always been offered to me, since I was about 5. [/QUOTE]Most of my damage was done when I was 2-8 years old. By the time I was 9 it had started to get better. And when I was 12, it went away completely. The rest of my damage was done the 6 months after having my son, I had NO insurance to go to a RD to get meds, and my GP RXed me MTX then, and it just made me worse. Any major damage I have now has been done within the last 3 years. This is literally the worse my JRA has ever been. Sure it came back after having my daughter, but I did not flare like I am now. Heck I did not even know what the hell a flare was until after having my son.
It hits and it hits hard at times. I tried to cut it off before it got to this point, but the MTX did not do anything to it and made me hurt worse. I actually felt less pain after I stopped taking MTX.
Joonie I know I am new here but I hope you don't mind.
Some of the stuff you have posted I can so relate too. Except the pred thing. I don't take it and if I can avoid it I will. I only say this because of something I seen first hand. But I know many of you could not go a day without it so therefore I won't say anymore. So see I don't know what the heck my memory problems are from. But I can relate. I do forget to take meds at times. Not all the time just sometimes or forget if I took it or not. Scary. Among the other simple things you forget.
And I too, am one that will take what the doctor says. Not often do I diagree, I just do it. Though in time I may not who knows. And I seen a post before with needles. OMG I can relate. Especially IV's. Someone is always saying to me something about how I freak with IV's. Well you try going in and being poked so many times and the twisting until you are crying. Embarassing yourself. An hour later still no IV in. Or even to get blood drawn. Some days they give up and make me come back a week later, leaving with black and blue arms.
To me it's embarassing because I can't just suck it up and take it. I end up crying. The dentist is the worse with the rib graph in my jaw. It kills me to hear open wider when there is no physical way I can. Or you act worse than a child.
Okay sorry didn't mean to go on and on. Just wanted to let you know things I see you post I can relate too.
I freak with IV's too... I'm better now, but it used to be really bad. And, of course, some of the damn nurses at the local hospital are the most rude, uncaring creatures I have ever encountered on this planet. I got into a shouting match with one of them in the ER once. I was there for unexplained racing heartbeat. It was up over 180 and I was sure I was about to have a heart attack. One of them came in to run an IV, and I TOLD her that I have an irrational fear of needles, please be understanding. She SNEERED AT ME and told me if I freaked out or cried she might "make it feel not so nice". Well, BOOM. I thought my calm, cool and collected upper-management suit-and-tie wearing husband was going to rip off her head and s**t down her neck. I ordered her out of the room and demanded to see the ER manager. I told the ER manager that these nurses need to remember who is paying their salary - I AM. I have a choice of hospitals, and the hospital 10 miles away treats EVERYONE as though they have a needle phobia. They offer numbing creams and numbing injections if you want (a super-fine needle that I can't even feel) before the IVs are inserted. When blood is drawn, they NEVER whine about having to use a butterfly needle. I can't stand the feeling of the needle in my arm being moved like a gear shift when they change tubes, so I always demand a butterfly needle. Again, the local hospital claims they are too busy to spend the extra 30 seconds to do that. At which time I ask for the manager...Wow Jasmine BTDT. You poor thing. I have ended having butterfly used to draw blood and then hear them complain about it taking too long to fill up. *sigh* Well I am sorry!
They ended up using the numbing with the small needle when I was in the hospital with my jaw for the IV. I just wish everyone would especially when it never works the first time around. Well at least on me.
I am like that with blood being taken. My veins are shocking. There is only one place to get blood and only with a butterfly. I have a regular nurse who can always get my blood. Well my surgery decided to upgrade and get in new blood nurses . she tried 4 times even though i told her exactly how to get it . As soon as she started to check the back of my hand and my wrist I just lost it. I was bawling like a baby. She went and got my regular nurse and guess what she got it first time. So we certainly showed her she wasnt so great. Now I just have to book straight in with my regular nurse. If I know i have to have an IV for surgery thats different but to go into hand or wrist for a 3 weekly blood test. no bloody way.Needless suffering ... what a great topic.
Before diagnosis as I watched my depression cause all my great veins to slowly sink away, I finally had a blood draw where they couldn't find a vein. Powerful depression. Anyway, that's when I was told about butterfly needles, and I ask every time now, and it great.
Oh, and after about 6 months of treatment after diagnosis, my veins starting rising back up again and now you can see them.
Joonie - your story is your story, and mine is mine. We all have our own story of suffering or we wouldn't be on this Board. It's disappointing to read posts where other fellow posters think that their experience in this disease means that's how you are suppose to handle your version of your disease. None of us can walk in another shoes, especially a shoe called RA/auto-immune.
Needless suffering: Joonie, you managed to boil it all down to two words to describe what chronically sick people have to learn how handle on a minute-to-minute basis.
Joonie - maybe mtx was used when you were younger, and maybe it was not. Everybody is different, every doctor is different, and in my opinion, if you got along without it when you were younger, that is a good thing. We have experienced first-hand what immune-suppression can do to a young child.
It is a fact that mtx is still not approved for use in children. Our ped rheum explains this away as: Mtx is a cheap drug and the drug co. doesn't want to pay for the studies because they won't get it back. Enbrel is the only drug that has been approved because they paid for the studies.
I know Humira is now trying to get approved, and it is expected to be approved.
It is a fact that all doctors are still different. A mom recently posted that their dr. goes straight to Enbrel, because he believes mtx 'causes growths'. A dad recently posted that his daughter...in a wheelchair... is just starting Plaquenil.
So much is unknown about long term effects of these drugs in young children. There aren't too many out there who had mtx at a young age, etc. If your mom or drs. erred on the side of caution, and if your symptoms were controlled until after childbirth (when a lot of women first have onset, anyway) I wouldn't second-guess a thing. With no known cause, and no known cure, everybody is just doing the best they can.
I couldn't have said it better, Suzanne!Hi guys,
My RD wouldn't give me MTX because I was still in child bearing years. This is why she prescribed Naproxen. And it's a very good thing because although numerous doctors before her and even her had told me I was incapable of having children, I wound up pregnant shortly after seeing her.
Joonie, I was never on anything more than baby aspirin as a toddler. At some point around maybe 5, they threw in plaquenil. Much like you I suffered my damage from ages birth through 9. I still am not on anything aside from Naproxen. And ya know, with all the horror stories of the side effects on some of these medications, if I'm getting by, give me plaquenil and naproxen for ever. I don't need the side effects that would potentially lay me up more than the RA does. I have a 2 yr old to take care of as I know you do.
As for RA brain fog, I have it like most of you here. I didn't know it was from RA but it's undeniably there. I forget to take pills, think I didn't take them when I have. I can't even tell you how many times, I've had to pull out the bottle and count how many pills I had so I could figure out if I had taken my daily dose. LOL
I have also forgotten to take meds and also wondering if I had taken them or not!!!!
I love the name RA fog!!!!
Ditto on the brain fog and pills - I had to count at first, then I kept dropping them and they would roll out of sight under the refrigerator. It's amazing.