Dealing with RA

[pumpkinfish]

Ugh, as much as I hate doing this publicly, I need to vent

Back story:
I was diagnosed in 2002 with Rheumatoid Arthritis. It took me a year to get myself in to see a doctor after I started having symptoms that were "weird" (loss of weight, exhausted all the time, DH having to help me up off the couch). I ignored it for so long (a year is really a long time with this disease). I went to the doctor who then referred me to a Rheumatologist. Dr.Maxwell has been helping me ever since! He put me on an aray of drugs (Napersone, Prednisone, Methotrexate). Eventually he got me down to just the Methotrexate and then had me do Enberyl too. During my last visit in July, I informed him DH and I wanted to start thinking about a family. He took me off the Methotrexate and so I was doing the Enberyl only. Typically I have some discomfort in my knees (left knee mostly) and in my wrists, even while on the medications.
Fast forward to Labor Day weekend:
I went with a group of people kayaking through some rivers in the area. It wasn't very strenuous, but I definately felt the repercussions the next morning! I had shooting pains going up my nerves in both wrists. It was very difficult for me to brush my hair. After 2 weeks I called and made an appointment to see Dr. Maxwell again. I discussed with DH and I wanted to go back on the Methotrexate. I met with Dr.Maxwell and he prescribed the Methotrexate again, along with Prednisone. He said to take it as I see fit to get rid of the intense pain. It takes about 6 weeks for the Methotrexate to kick in fully.

Well I had forgotten (until the other night) that the Prednisone causes me to have huge mood swings. I think I feel the onset of Depression kicking in. I am heading into "Oh woe is me, why did this happen to me, My DH shouldn't have to live the rest of his life taking care of me" ect ect.
I am such a positive, optimistic person. I love my DH VERY much and truly appreciate everything he has to do around the house and for me. The other night he said something that made me jump so far down his throat..have no idea what it was, but I remember feeling me going from perfectly ok, to enraged. It was such a terrible feeling . We have been married for 7 years, and we always try to take "discussions" with a grain of salt. But that outburst was completely rude/cruel of me.
I work in Admissions for a college. I am face-to-face with people everyday, helping them better their lives with college. I LOVE my job! I also am on the computer the entire day. With my wrists still hurting 90% of the time, it has made me not like my job recently. I hate being a burden. I feel like I am not pulling my weight around here (or even living up to my personal expectations).
And I hate complaining and venting because it could be so much worse. I know there is a reason I have this disease. I want to be happy. I want to go back to who I was 2 months ago (stupid kayaking trip!). And even during that last visit in July I had made so much progression! My grip-tests were high and blood-work looked awesome.
I am fortunate enough to have the love and support of a close family. Although I do need to vent and receive/share information with people who go through these similar emotions and setbacks. I am a part of a RA group on myspace, but don't speak up too often becaus a lot go and sound so negative all the time. I have tried the arthritis foundation but my area doesn't seem to have a very active chapter.
DH and I are going to WDW in 9 days. I was worried about my knees and walking but now it seems my wrists are where the pain is at. I rode one rollercoaster this past Sunday, at Busch Gardens and my wrists were killing me afterwards. I really want to enjoy my trip. I don't want to be a big burden to DH either. He won't enjoy himself if he knows I am constantly in pain. Argh!

I really hate feeling like I am so healthy, but can't so something as simple as open a bottle of water, or even turn a door knob. Every action with my wrists hurts. Even if my wrist is still, it hurts. I go to sleep with the pain and toss and turn because it gets intense overnight. The prednisone doesn't work and I really don't forsee myself taking it any more. I'd rather be in pain, than lash out on DH again. Some OTC meds I have tried are Tylenol Arthritis (on some now) which helps a little. The other night I had Tylenol PM which helped me to fall into a deep sleep and actually get rest without feeling the pain, but I don't like how groggy and drugged-up I felt the next morning . I have been using the portable heatwraps you can find in stores. They help a little, but when i have them on at work, everyone stops to ask if I'm okay. Most know I have RA (I speak openly about it if it comes up as I want people to understand what it is, and young people can get it too- most think you have to be older and are usually shocked when they find out).
Any words of wisdom? Any words of encouragement? I do feel better getting that off my chest, so I thank you for allowing me to do so. I would love to hear from others though. It comforts me to hear those that are in my shoes, and the positive ways they live every-day.

 

[OneLittleSpark]

Firstly I'm so sorry things are going badly for you at the moment. I do hope this bad patch doesn't last much longer, and that things get easier. I can't find the right words, but have oodles of sympathy / empathy for you.

Now, for the practical bits:

Discuss other med options with your Dr as soon as you can. It can take a bit of experimentation to find a combination that suits you. You may also want to look into non-medicated pain relief, such as a TENS machine, to help the meds along.

Talk to your husband and keep him in the loop. He loves you dearly and I'm sure he doesn't see you as a burden. I understand wanting to 'cope with it' by yourself to save upsetting people, but that can leave your loved ones feeling 'left out'. Just make sure he understands that you do love him and that the meds are causing weird moodswings.

Try to pace yourself, especially when things are bad. I know how hard this is, and often don't succeed at it myself.

Have you looked into adaptive aids, to make life a little easier? There's a huge range of things out there to help, make use of them. If you haven't already talked to one, an OT might be able to help advise you on this. Grippers and jar openers might be a good place to start, to take a little strain off the wrists. Also, make sure your work space is well laid out and ergonomically sound. An ergonomic keyboard and mouse can make a huge difference.

You might want to check out But You Don't Look Sick. It's an online support group for those with invisible disabilites and doesn't have any of the negativity, backbiting or 'competition' that can arise in some groups. Remember, nobody is an island and there is nothing wrong with needing to vent or ask for help . The link is www.butyoudontlooksick.com and you'll find links to articles, reviews and (perhaps most importantly) the message boards down the left.

Can't think of anything more right now, other than to say take care of yourself. Hope to see you on BYDLS (I use the same name over there) and more importantly, I hope things get easier soon

 

[merryweather20]

I know exactly how you feel. I have JRA and everything in your post rang so true for me. I fared better this year, but last year I was actually in tears during my job evaluation, because i wanted to do so much more at work.

I've been on all the medicines you mentioned except Enbryl. I was using Humira instead which just gradually stopped working. I'm now on Remicaid, which works well but there was so much joint damage while we were waiting to see if various parties to cover the cost, that my knees are locked between about 85 and 95 degrees (I found an othopedic surgeon who thinks I'll be able to walk again if we replace them so I'm keeping my fingers crossed for that).

I 100% agree with the above poster about the aids. I have the Black & Decker lids off jar opener that I absolutely love. If you are to the point you are dreading getting in the shower then consider getting a bath seat, and a rubber mat. I was dealing with an occupaqtional therapist at the time who was aghast that I didn't have a bar to clamp to the side of my tub. I thought that this was a rediculous idea since I could still walk around at that point, but I was amazed at how much safer it felt.

I use hand splints to help at work (I'm at the computer all day too). Oddly enough the ones that I purchased from the arthritis society are actually designed for bowling, maybe you could see what your local bowling alley sells anything that would be helpful for you.

If there is a Pharmacy or dedicated store near you for aids I'd suggest going and walking around to see what they have, they might even be able to recommend things for you.

At the other board you mentioned its just easy to be negative when you're pretending you're fine all day and the internet is an easy place to vent (heck some of my above blurb was probably pretty negative).

 

[pumpkinfish]

Thank you so much ladies for your replies!

I appreciate how sincere your posts were along with the suggestions. I will definately look for that jar opener. The other night I went to make DH dinner and couldn't open the alfredo jar. I tried for 20 minutes, and even had the jar in hot water to try and release the lid. Nonetheless, DH only had pasta (no sauce) ready for him

But man it feels good getting things off my chest. It feels even better knowing people understand!
What might be nice, is to hear from significant others/husbands/wives/ect of those with RA. Maybe it would help me out more knowing their thoughts too. I know I shouldn't feel like I'm a burden. DH and I are very open with our communication. But I know he must get tired of everything he has to do.

Can you all think of any other sites that might have products that cater to us? I will check out the wrist guard/splint! I used to not be able to take baths but my knees are fairing pretty well in comparison to my wrists.

 

[merryweather20]

I got mine at Zellers, but they had them at Linens 'n Things as Well.

www.lidsoff.com for more information.

I wish I could give you more suggestions of places to go. I buy most stuff at Shoppers Drug Mart Home Health Care which I know they don't have in the States.

To drain pasta I often use a large rice skimmer so I can wait and pour out the water when its cool.

 

[TwoGriswolds]

Hugs to you. I'm 54 and lived with RA for 39 years now along with a long list of other stuff. It sounds like your DH is a good support and that's very important. Rage shouldn't be acceptable in any meds though so do discuss with your doc. TENS and splints are good plans with his approval as well. It might be helpful to if your DH could also be at your dr appointments if not already because there are specific things he can look for to aid as well. Even though the support group you found doesn't seem active enough , inquire at your hospitals and of your physician of other possible ones. Many hospitals have 'health groups' that will combine a few things (RA with SLE for example) and give you opportunities for free PT in there was well. Prayers to all of you and hang in there ~ every day we're closer to better treatments and cures that we never used to dream of.

 

[TwoGriswolds]

by the way, you may already know this but Tylenol PM is just tylenol with benadryl in it (that's the sedating part) and Tylenol arthritis is just Acetamenophine extended release. These are among the meds that are identical in generic form (walmart ,walgreens, cvs brands, etc. instead of Tylenol,etc. brand) Also if you feel the 'TylenolPM helps you, you could take plain tylenol (acetamenophine) plus 25mg. of generic benadryl (it's called Diphenhydramine generically) instead of the Tylenol pm which has 50mg and see if the 25mg helps you but doesn't leave you groggy.

Diphenhydramine can be safe as a sedative in adults even up to 100mg qhs but not on advisable on a continuous basis obviously. You can also get generic extended release versions of TylenolArthritis (oops I think I already explained that, sorry) Example, a bottle of 100 25mg generic diphenhydramine (benadryl) is a savings of about 300-400% easily in most towns.

I meant to tell you this earlier but got distracted by phone during my post to you about your RA so wanted to mention it just in case you didn't know. Since you've got RA you probably already know, but for me , a dollar saved is good as long as the ingredients are identical (and they are) In the OTC meds, the naproysn types are the best for stiffness and pain control for me for my RA and OA (aleve,etc) .. I was glad when they went OTC. But sadly I've also spent time in ICU with esophageal erosion from long term use of nsaids and good old asprin (in the early years) which is still probably the best real miracle drug out there for many things. I was one of those who had such hope for the cox-2 inhibitors and found help in my celebrex until I developed a dysrhythmia and that took care of that along with the removal of it.

I do so hope you find something that works for you at least for a while, that seems to be the general pattern.... we find something that will ease things a bit and then we get that lovely time of symptom exacerbate and it feels like we're back at square one. Best wishes to you!

 

[pumpkinfish]

TwoGriswolds, I had no idea about Tylenol! That does figure about Tylenol PM because that is exactly how I feel after taking Benadryl (and I hate that druggy/groggy feeling ).

It's funny because I took a dose of Migraine Excedrin earlier for my sinus headache and all my pain went away! How much do we know about the affects caffiene has with joint pain? I know that is a main ingredient in Excedrin.

And yeah, it stinks when things are going SO WELL and then you get a kink in the road. I do feel a lot better than I did this morning. Mornings are just rough when you are having a flare-up, let alone added shooting pains in the wrists.
You really know your stuff about RA! I appreciate your insight and guidance with the various drugs.

On a completely side-detour, I love the fact that our DH's have the same name

merryweather20, thanks for that extra info! I will send DH on a detour from work tomorrow night to try and find that lid-remover. I apologize because I wanted to ask you what you do for a living? I do hope the knee-replacements work out for you . Thanks again to you too, for your comfort and support!

 

[merryweather20]

I work in an accounting office. I used to go out and do on-site audits of our clients. This isn't as depressing as it sounds because most of the accountants got the cold shoulder in the offfice so most were ecstatic to have some one to talk with

Work has been very accommodating about letting me work in the office though. Out of all of my clients only 1 would have been wheel-chair accessible.

I hope your DH is able to find the Jar opener and that it will be helpful

 

[Mrsjvb]

I was diagnosed 35 years ago at age 5. everything you have said, I have felt, and still do to a large extent. I also have the added worry of the D word: Deployment- looming over my head.. when he leaves- not if, but when, DH will be gone minimum 12 months.. I will have to make a VERY tough decision.. move in with my In laws or my Father( none of whom are getting any younger themselves, mind you) or tough it out on my own.. being unable to drive( every joint is affected, and my neck does NOT move. permanent whiplash, that's me!)

NOT looking forward to that at all.

 

[KPeveler]

on the main page of butyoudontlooksick.com are a series of articles and websites. some of them are websites for adaptive devices, and a lot of the articles are product reviews.

i also suggest checking out the boards - after all, I am the one who pointed OneLittleSpark there! that site has some amazing information

 

[pumpkinfish]

I was diagnosed 35 years ago at age 5. everything you have said, I have felt, and still do to a large extent. I also have the added worry of the D word: Deployment- looming over my head.. when he leaves- not if, but when, DH will be gone minimum 12 months.. I will have to make a VERY tough decision.. move in with my In laws or my Father( none of whom are getting any younger themselves, mind you) or tough it out on my own.. being unable to drive( every joint is affected, and my neck does NOT move. permanent whiplash, that's me!)

NOT looking forward to that at all.

I am so sorry to hear about the upcoming deployment. I am from a military family and live in a Navy town so I very much understand your frustration with him leaving.
The other night I brought up to DH, that I don't know where I would be if I didn't have him. He helps out with so much and I feel I would be helpless if he were not around. And here you are faced with that situation. Keep us informed on your decision and we will try to support you if you ever need that shoulder!

I also wanted to add that my wrists feel SO much better today. I actually got a pretty decent amount of sleep last night (even with the Yankees losing ). That's the thing with the disease...one minute we are up, up, and away and the next we are trapped in a living hell. I know I feel better speaking about my feelings and issues openly. On these boards, I don't have to feel like people are taking pity on me. That is NOT what I want. I just want understanding. Just because I have a smile on as often as possible, doesn't mean I am not suffering.

 

[KPeveler]

Just because I have a smile on as often as possible, doesn't mean I am not suffering.

Well said! We all try to be a positive as possible, and sometimes that confuses people around us. When we get bad, they often say things like "But you were fine yesterday!' or "I didn't know you were that sick!" when in fact we just didnt bring it up recently...

glad to hear you are doing better today!

 

[pumpkinfish]

Ok, I have a question for the ladies...
...or any guys with long hair

I'm having a minor flare today. This morning I was trying to do my hair and it was hard for me to handle the straightening iron, let alone my curling iron. Right now my hair is about 7 inches down my back. I've been growing it out for Locks For Love and should be getting it cut within the next 30 days.
Anyways, any ideas on dealing with this hair until then? I live for pony-tails but it has been hard with the pain in my wrists. I almost just left my hair alone after blow-drying it because of the pain. But alas, I work in an office and that would not be acceptable. Plus, I wouldn't want to scare my students!
So what hairstyles do you use? Any products that might aid me?
Many thanks!