Hello,
I have finally gotten the guts to registar and post. I am not used to asking for help, but I have realized that I really need it. I have only been diagnosed for two weeks, but they have been two of the longest weeks...My dr. immediately put me on 15mg MTX and plaquinel. Right now the drugs make me feel worse than the disease. Does this go away?
I am a professional wedding/portrait photographer, and have my own studio. I also have two teenage boys and a hubbie who is just as confused as I am. Right now, I am in a total funk as to how I am supposed to manage everything and be totally worthless for two or three days a week from the drugs. I know it could be much worse and I am thankful that it isn't, but I am in a tailspin. Three weeks ago my life was pretty good, I had my problems, but I was managing the stiffness and the aches. Now its a whole new ballgame, and I don't know the rules, or even if there are any. Anyone have advice on how to deal with clients, deadlines, and stress? Any reccommended reading, especially on how to deal with the headgames or reactions from aquaintances which range from "Ohmygod" to "yeah, my grandma has arthritis but she does....." Everything I have found has been the clinical and about the physical, but as you know and I am finding out, its much more than that.
I have been lurking here since I found out, and so far the best advice I have read has come from here. I promise to not whine much. Please help me get to a place where I can start putting my life back together
thank you
laurat
Welcome!
I just wanted to say hello right quick...I'm off to work. I'll try to provide a more lengthy response later, but I just wanted to let you know you're not alone and we've all experienced what you're experiencing now.
Alan
Hi Laurat, and welcome. I'm glad you found the courage to post. You're going to be building that courage muscle a lot now that you're on this road. It is scary and disorienting, but you will feel steady on your feet again (at least by analogy if not physically, though hopefully both).
I'm a newbie to RA too. I'm on plaq and celebrex only, but am getting worse instead of better and expect to get the mtx added when I see the doc in another month. Since I haven't been on the mtx yet, I can only sympthize and not advise on the adjustments to that medicine.
You're so right that the big job for now seems to be getting this sorted out in your head, getting on top of the mind game, and figuring out how to move forward. All that is more than possible. I'm making a lot of progress with that (well, most days) even while I don't yet have a handle on managing the disease.
Like Alan, I want to say more that's encouraging and useful, and I will, but I have to go do some work now.
You're not alone.
Lauret,
Welcome to the boards
I was diagnosed last June and began taking plaquenil. A few weeks later the dr. started me on mtx. It made me very sick for the first few days afterwards followed by a few days of feeling O.K. only to have to start all over again. That, along with all the hair loss caused my dr. to take me off both of those and start me on something new. I'm on sulfasalazine now and I'm starting Humira next week. I know lots of people here are on mtx. I just couldn't function. I may have to go back on again someday, I don't know, I'll just deal with it if the time ever comes.
And don't worry about whining. We don't call it whining. Everyone needs to unload now and then and this is the place to do it. Where we all understand. Good luck
Sorry you're having such a rough time right now...it DOES get better.
Are you taking folic acid?
Lauret,Hi Lauret,
I am so sorry that you must deal with this as we all know how very difficult it can be. It is a life changing disease and support is one of the things that helped me. My first 2 docs said that it was all in my head, lol. Finally I found a very supportive PCP and Rheumy. Is your doc supportive? Also give the family time as it took a few months for my hubby to really get it.
I am on MTX that after over 2 months has not helped much so doc will be adding a Biologic soon. The Folic Acid is imperative to helping the side effects of MTX. I am on 20mg and feel kinda sick for a few days, then a few days better and start all over again.
The reason that we have to use these drugs is to slow down the joint damage that RA causes.
Please continue to post and ask any questions so that you can get answers quickly to help you in this very difficult time.
Take care,
Thank you everyone!
To answer some of your questions:
My Dr. is a rheumie, and he's okay. After dealing with Dr.s who were real A-holes, I can deal with okay for awhile. Yes, I am on folic acid, with the other drugs, I asked about raising the dosage based on some things I read here and the fact that I got so sick, but was told it wouldnt' make a difference. Hmmm
Well, like most of you, I need to try to work...especially since this is my first "good day" this week and I am already two weeks behind... Sigh....Thanks again for listening
LauraT
Laurat, welcome aboard. MTX did make me sick in the beginning, but not to the degree it is making you sick. You should call and let the doctor know. If nothing else, it will put your mind at rest. Some people cannot tolerate the MTX. So, there's nothing wrong with speaking up.
As far as dealing with clients, that's a hard one. I was a freelance artist several times in my career and it's like they have no respect for your personal life. It also makes is hard to balance out your income. If I was in that position again (which I'm not because I can't work at all), I would schedule my rest periods, doctor's appointments and exercise in right along with my client's appointments. Also, raise your prices so that you don't have to work as hard to make the same money.
If you can find balance in this, you can still make your income, pursue your art and take better care of yourself.
This is a difficult journey ahead of you. But some people respond very well to the medications and can get on with their lives. Few of us ever live without pain.
You have to explain to people that this a systemic disease. It affects all the systems in your body, not just your joints. It's nothing likie Osteoarthritis which is the "wear and tear" arthritis that most people get when they age. Although, RA can make you more prone to OA. Also, explain that is like having a reallly bad flue all the time.
You have to really take care of yourself now. Women tend to put themselves last in their list of priorities. But you have to push yourself up on the list.
If you have clients that are too demanding, let them go. Find gentler clients. Make sure you are paid into Social Security and that you have good medical coverage. These are vital. The medicines are expensive and if you ever have to quit working you want to have SS (although it is the biggest pain to get).
I know it's scary. It still scares me. But it helps coming here and posting questions, ranting, raving, laughing and confirming that no, you are not crazy. It is this disease.
What kind of sick are you getting from the mtx? I went right to the injections instead of the pills to try and avoid most of the gi upset and nausea. It still does make me feel crappy for a few days though! However, the mtx in combination with humira weekly seems to be helping. I am also on placquenil and steroids.
Making it to work when you are sick just plain sucks. I work full time as well and its very difficult.
LauraT,
A couple more things for you.
You asked how you're going to manage it all. The truth is you won't be able to manage what you used to. I don't know what you will and won't be able keep doing, what you'll have to do differently. But if you're going to manage this successfully I think you'll find that Job 1, at least for the time being, is managing the disease, taking care of yourself, learning about this, and making the physical and psychological adjustments.
It's a big undertaking, and you just can't do it and everything else you used to do. This taking care of yourself and adjusting can't be fitted in around the spare corners of your life, either, without paying the price down the road. Without decreasing the stressors and increasing the rest and other care-taking actions, we're just adding to the joint destruction and other physical effects that all the medicines and doctor visits are trying to curb.
It's a difficult thing to do less, drop some things, delegate others, change your standards and expectations, and change what others can expect from you. Very difficult. And both necessary and inevitable, unless you're one of the lucky ones who has one of the slower, easier courses of the disease or get early and lengthy remission.
Like you I run my own business. As you know it has its advantages and its extra stressors. I've become my first and most important client. Whenever I allow myself to get sucked into too many demands and stresses, from work or otherwise, I pay for it, and gradually I'm getting smarter and more pro-active.
It's a process. But I figure pushing or stressing myself into a bad flare is just plain dumb and counter-productive. I fear these flares where I have a hard time participating in my own life either on a work or personal level. I'd rather settle for doing less in the better periods to avoid having to do nothing in the worse periods.
I can't control the uncontrollable parts of the disease or the externals, like the weather, that impact how I feel. But if I act like a victim of my own life and accept all the stresses and demands in my life as necessary and unchangeable, I'm fooling myself and making myself worse. I can't change RA. I can change me. Not the way I wanted to do it. It's a hard lesson.
You asked for recommended reading. I read a shelf full, and everything I read added something useful and helped me with the transition. But then I'm a reader down to my sore toes and information is how I make sense and cope.
My favorites:
The First Year Rheumatoid Arthritis
The Arthritis Helpbook
Living with Rheumatoid Arthritis (by T. Shlotzhauer)
Out of Joint
Good luck!
Hi Laura and welcome to the board. You will find a lot of caring, support, and wonderful people here. And things that will make you smile when you feel down.
I also have a teenager and a pre-teen. It takes a lot of talking with them and answering their questions at an age appropriate level and answering them honestly. I have found with my girls that when I am not feeling well they would rather have me tell them than hide it from them. They also like to know what my doc says and they like to know about my meds and how they will help me or what to expect with side effects. The unknown is very scary for teenagers (and adults) and I have found the girls to be more helpful and understanding when they know what is going on. My husband and I talk long and talk often about this disease and how to adapt our lives to it. The key that we have found is communication and patience. And a lot of it.
As far as what to tell people, I just tell people that I am working with my doctors to find the combination of medications and other therapies to give me as normal of a life as possible. When people give me crap about "can't you just take an aleve like the commercial?" I tell them no that my RA has progressed so far that I take a chemotherapy drug for it. That usually makes people stop and think twice before blowing off your condition to you whining and complaining. Which we don't do anyways cuz this disease can suck and we are legit in speaking what we feel.
Advocate for yourself and your health. If you are not satisfied with your doctor find another one. You have the right to control your pain and this disease to the best of your ability.
This is a good place to vent what you are feeling. Never feel bad or wrong about doing that. I also have taken up blogging. It is great for venting. Or keep a journal. I have found that writing is very cathartic for me.
There are good days and bad days with RA. You will learn to listen to what your body tells you and to rest when you should. It took me a long time to learn that and sometimes I still follow the path of my RA life kicking and screaming. But I am more and more starting to look at it as I am going to live my life the best I can not only for myself, but for my family.
Alright. I hate being the 90 millionth person to post on these. Everyone takes the good stuff to say :| Everyone is right. LoL This place is great, and you've already gotten a TON of awesome advice. Usually, I have more to say but I'm runnin off NIL sleep. So take care, chin up, and keep coming back here, someone will ALWAYS answer you and be here to cheer you up!
I think I end up doing a lot of cheering up.
It is so good to know that so many others understand!
Please Help yourself.
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