Rheumatoid Arthritis - Living with a Disease

Well, I thought I would post an update to my lense here. It is July 2011. I started this lense a couple of years ago. Since I started this lense - I have become crippled more and less able to move around as much. I am still moving - mind you - but it hurts sooo much more now. My right arm is frozen a the elbow - so I am not able to eat or brush my hair like I did before. I can type on the computer - but that is about all I can do with my right arm now. I had to teach myself to eat with my left hand and groom myself with my left hand/arm. I am trying to teach myself to write with my left hand as well. It is not an easy thing to teach yourself these things. It took a while to get used to using my left hand/arm to eat. But, if you want to do something bad enough - then you make it happen.

Last August I was diagnosed with basal skin cancer and had Moh's surgery. The cancer was on my face just under my mouth on the left side. It took two passes to remove the cancer. So far, I am cancer free. I hope to stay that way. What bothers me mostly about the cancer is - it seemed to pop up after I started Orencia. Please - I am NOT stating Orencia causes cancer - it DOESN'T. But for me - it seemed to trigger the cancer in there and made it come out. I am fair skinned (I am a auburn/redhead). So, they tell me the cancer could have been there for years just waiting to come out - ugh. Creepy thought.

Now, I started taking Orencia over 2 years ago. I had to quit after 6 treatments because I ran out of money. I did get a grant from Healthwell Foundation (wonderful organization). But, the money from them ran out in 4 treatments. Then my doctor office did not tell me I ran out of grant money and I got 2 more treatments - then got a bill for over a thousand dollars. Orencia cost I believe is based on weight of you. But, on an average it is about $3000 a treatment. Medicare will cover 80% of that bill. But as you can see from the math - that means I have to pay/come up with at least $600 a month out of my own pocket. I am grateful for Medicare and at least having insurance. But, I am still stuck in the groove where I am too young for supplemental insurance. And my husband right now is in college full time - so I can't get insurance through him. Even if I do - I have to wait a year (with no doctors or treatment of any kind) before private insurance will start paying the bills. (pre-existing condition)

So, at this time I am back on methotrexate, prednisone and pain pills for treatment. This is until my husband graduates and get a job with insurance.

Now - please - I am not trying to complain or be a downer. I am pretty lucky for what I can do and what I have. I have a wonderful husband who loves me and is understanding/supportive. I have a father who loves me as well and is helpful and supportive. I have a sister who tries to be there for me when she can. I can run my businesses from home - which I am grateful for. And I have the Lord in my life. I have a lot to be happy and grateful for.

I think I am getting to the point where I have accepted my disease. Now it is time to learn to live with it.

Thanks for stopping by - leave a comment below to let me know you visited.

As I mentioned earlier - one of the problems with having a disease is being able to purchase the medication needed to keep my disease under control. Because I am trying to get on medication that is IV admininstered - the cost of the medication is much more then anyone can afford(about $40,000 a year). Since I don't work and only receive my SSD payments and that I am on Medicare - it is difficult to afford such medication.

A few months ago - I was recommended in applying for Drug Assistance through foundation's. I thought I would pass along some information I received.

Recently I applied with Healthwell Foundation for drug assistance. They approved me for a grant for me to use towards my medication. This will help offset the costs that Medicare does not cover. If you are in a situation where you have partial insurance like Medicare and need financial assistance for medications for the 20% Medicare does not cover - try Healthwell Foundation. - You can find their website at - http://www.healthwellfoundation.org I found their representatives to be quite friendly and helpful in applying. They were able to help me - maybe they can help you too.

I thought I would start a module of items that I have purchased and found very useful in my day to day living with Rheumatoid Arthritis.

I know when you are first diagnosed or when the RA starts to get more aggressive, it gets harder to work and function on a daily basis. And since this disease normally hits people(like myself) who either does not have a lot of money or ends up losing their income to small disability payments - well you have to find things on your own or get creative.

So, I figure why not pass on what I have learned so far. Maybe it can help others. Now - I am not endorsing any products listed here. You are an adult and can make your own decisions. These are meerly suggestions and should be taken as such. I am NOT a doctor or nurse(or in the medical field for that matter). I am just someone who has this disease and has been diagnosed for about 7 years now.

*** AGAIN - I AM NOT AFFILIATED OR ENDORSING ANY PRODUCTS. I AM ONLY MAKING SUGGESTIONS ON MY OWN EXPERIENCE. You are an adult and need to make your own choices. Which means, research before you purchase. ***

Now, I have found that I can't sleep on inner spring mattresses anymore. And so because of this, I did a lot of research to find a new mattress/bed. I was looking for not only comfort but affordability as well.I found many different types and brands of mattresses. I even went to furniture stores (from l'cheapo furniture stores to speciality bed stores). I laid on a lot of mattresses and tested each one.

I tested a higher quality mattresses. The pillow top kind. I found that the springs still pinched my shoulders, rear, hips and back. And I was so stiff getting out of the bed. Plus, with some of the pillow tops - I needed a step stool to get out (and I am 5'5"!). Then, I looked at it. It is quite poofy. How would I put on the sheets? I can't get my right arm above my head and to move myself around is almost impossible.

Then I tried the famous air mattresses that is advertised on TV. My husband and I visited one of their stores. He loved the controls - new gadget for the guy - lol. But, I couldn't get comfortable. I kept adjusting up and down and then would lay there and have to adjust again a few minutes later. And, I found (because of me and my disease) that I had to re-adjust it if I moved from my back to my side. I knew that would wake me up. I needed to find something that automatically adjusts when I move.

Next, we tried the water bed. Well, that was a dumb idea to try that(for me at least). LOL Oh well, you never know until you try it. (geez couldn't get out of bed without help - really wonderful when you have to use the restroom in the middle of the night!). I don't think my husband would be to thrilled with me if I woke him up to have him help me get out of bed to go to the bathroom at night. Plus, we have cats - so that ended that idea.

Then I tried the foam mattress. I research many different kinds. I went to a high end furniture store to test the popular one that is advertised on TV(you know). I don't want to mention the name, because I don't want to get into trouble. But, it is the one everyone raves about. I found that it was too firm - not really giving. I really didn't sink into it. I laid there - it felt like laying on the floor really. And there was a chemical smell. I have a sensitive nose and a sensitive husband who has allergies and asthma.

So, I then tested some the cheaper types. Ok - they actually crumble. And the quality isn't that good.

*** I recommend:
Then I found IKEA. If you haven't heard of them, they are a Swedish based store that offers many different kinds of funiture and accessories for the home. My husband and I went to the store a couple of times to test out their mattresses. The nice thing about their store is that if you go during the week while everyone is still at work, you can actually test the mattresses (lay on them) as long as you want. After a period of time, I decided to purchase one of their foam mattresses. Their mattresses come with a zipped up cover(that is actually not to bad to wipe off in case of a spill). I also purchased a bed and bed frame from them. They have a bed frame/slatted bed base(insert that you can place into the bed itself) that is adjustable. It is almost like the hospital type bed where you can lift your head! I got the adjustable slatted bed base and it was only $120! The whole bed - mattress, sheets, bed frame and slatted bed base came to about $800! Which is much cheaper then the other brand I can't mention. And I love it. I can adjust the head to lift my head at night. Which is perfect, because the prednisone gives me heartburn. And they always say to elevate your head/chest when sleeping to help with heartburn. And the bed base is fexible and adjustable in tension. So you can make the bed as soft or firm as you want. It is not like being on coils and it is not a flat base. And since using the foam mattress I do not have back pain during the night anymore. I do from time to time have shoulder pain. But, this is because I sleep on my side. Which I am trying to break because my shoulders are messed up. But when I sleep on my back, I don't wake up for hours. Not like before where I was waking up every hour to toss and turn. They offer a 20year warranty on their mattresses. And they do have a return policy - they don't give money back(unless the mattress has not been taken out of the plastic - it comes rolled up in a plastic bag - actually lighter in weight then I thought - I could lift it) - but you can return it in 30 days to get a credit. Check the store though to make sure before buying.

So, if you hate your mattress and want to actually sleep at night - consider tossing the inner spring coil mattress out! Stop sleeping on metal springs! Do some research and go to the stores to test out different types of mattresses. Everyone is different in their disease and sleeping patterns. If you are considering the foam mattress route and do not have a lot of money to spend - check out the ikea.com website and/or store. You never know you might like it.

Good luck!

Quite a few months ago I purchased a Infrared Sauna. I wanted to find something that would "warm up the bones". Especially in the winter months. When it gets cold, it is hard to warm up sometimes. I tend to purchase large(really large) robes and layer like crazy. Or, I will take many hot baths during the day. But, the hot baths dry my skin out.

Back in the day when I didn't have RA, I worked at resort in Minnesota. Lutsen Resort is where I worked. It is a beautiful place on the shores of Lake Superior. I also lived at the resort. They had rooming facilities for their employees. Now, when I wasn't on duty, I was allowed to use the pool and sauna area. That is where I fell in love with sitting in the sauna. I loved swimming in the pool and then hitting the sauna. Now, their sauna was a large 10 person and it was steam. So, I started think wouldn't it be nice to have that for myself. But, maybe without the steam.

So, I started to look on the internet....

And, I found what they call an Infrared Sauna. It is a sauna without the steam. Which would be perfect for someone with RA because the steam could actually cause more pain(well it did for me). So then I did more research. And, I found that there is a portable unit you can purchase.

Now, I purchased a unit off a seller on Ebay. I paid $180 with shipping. I got an XLarge unit because I am a large woman(over-weight) and I wanted the extra room. I purchased one with a timer control and temp control. It came with a little chair(it is low - so if you can't bend - you may have to do something else or get a bench), a pad to go under me and a foot roller(I don't use it - my feet are too sensitive).

I set it up the next day and I love it! The temp for me gets to about 130degrees. For my husband it gets higher. I start sweating in about 10minutes (sometimes sooner if I am really bloated). I sit in it about 20 to 30 minutes each time and I used it just about every other day. I love it. It helps get the blood going, and my joints feel so loose afterwards. I follow it with a hot bath. It also burns calories. I am normally hungry afterwards. But, since I am trying to lose more weight, I normally grab a little item(like slice of swiss cheese) or a piece of fruit and water. It has helped me shed a few pounds. I don't recommend it for only weight loss though. I didn't get it for that.

Now, my husband is using it. And he loves it too. His hip has started to hurt him. Age is starting to take over in his hip. So, he actually comes in and sets it up and uses it a lot now.

I have it sitting in a corner in the master bedroom so all we have to do is slide it out - plug it in - and turn on the music or tv. I watch TV and my husband loves to listen to classic or jazz while in the sauna.

Our one male cat looks at us funny when we are in the portable sauna. He normally sits on the bed wondering why he can't be in there too. lol We have to make sure we close it after we are done, because he loves the stinky smell it has afterwards. It is fairly easy to clean. Just wipe down the sides and rinse out the foam bottom. Not super easy - but do-able.

*** I recommend...
Portable Infared Sauna

- Good Luck! (again - I am not affiliated with any sauna company and I am not endorsing it either - this post is from my experience and my husband's ONLY. make your own judgements from what you read and research - research - research before you buy!)

I have found that cooking isn't a pleasure anymore for me since I am not able to really cook/stand/prep meals. So, I have to get creative when cooking for me and my husband.

Buy cut up veggies and fruit....Ok - I know sometimes it costs a litle more. But, in the long run. The veggies and fruit are ready to go - instead of trying to stand there for a half of hour - cutting/slicing and peeling. Then having to go to the living room and passing out on the couch because your legs, back, feet and hands are killing you now. Now you are in a grumpy mood - and the poor husband gets an ear full when he comes home from school/work. Or finds you crying on the couch because you feel like you can't do anything anymore. UGH - I said to myself - you know what - I won't buy the package of cookies - instead I will pay more for the cut up cantelope or veggies. I LOVE the premade bags of salad - I even use those to top sandwiches with instead of trying to cut up a head of lettuce. It is already cut up - why not.

Buy & Use a crock pot....Now when my husband and I got married - my friend bought us a crock pot for a wedding gift. I thought at the time - how nice. I typical wedding gift - I am NOT saying that sarcastically. I really did think it was nice. I put it away though for like a couple of years. Then it came to me - I could put food in it in the morning - doesnt' take much. Let it cook all day and then - viola dinner is served. So, now it is like my best friend in the kitchen. LOL - I also like to set it up before we go to bed. Then for lunch the next day - or if I want to let it cook until dinner. My husband (I do too) go crazy over the smell. But, it saves on dirty pots and pans you have to clean or load into the dishwasher.

Get an electric can opener. Ok - I stopped using the manual can openers years ago. Went to Target - bought a $12 can opener - and it has lasted us a long time. I don't like the automatic ones you put on the top of the can and it goes. I had one of those - put it on top of a glass spaghetti sauce jar - it went crazy. Broke the jar and well I couldn't stop it because of my hands. It created a mess - ugh.

Keep your skillet on top of the stove. I have a cast iron skillet I LOVE. It is seasoned perfectly and well it cooks just wonderful. But, because of weight - it is hard for me to lift and get it up on the stove. My husband saves the day on this one. He cleans it out for me - puts it on top of the stove. I normally cover it with a lid - to keep dust and dirt out of it - you know normal day stuff flying through the air. But, then it is always there for me and I don't have to worry about lifting it.

Buy kits - skip home made items. I used to love to bake. Now it is too hard for me. I end up hurting and well worn out just from making an apple crisp. Ugh. So, now - I buy the crisp mix already made. And cutting up the apples. I used to be nice and neat - now I don't worry about it. Honestly - does your husband or family care if you have perfectly sliced apples and they are line up just right. No - so don't worry about cutting up the food for baking. Check your grocery to see - maybe they have the fruit already cut up - or buy it frozen or in cans. It is ok - Like that Sandra Dee on food network. She is always saying you can mix homemade with premade and it is just as good. Now, I also check my grocery bakery for items on sale - like pies and cakes.

Ask for help. Don't think you have to do everything. I know as a woman, we want to do it all. But, seriously - think about it. If you do it all - you are too tired to hang with the family later. You end up in the bedroom resting or sleeping on the bed with a fever and feeling worn out - no energy. How does that help. Get the others to help - ask for help. It is ok to ask for help. If they say no - which I hope they don't. Tell - them - ok then we don't eat tonight. LOL - that will get them going.

This is what I can think of for now - and my arm/hands are killling me from all the typing. So....I am going to quit for now. If I think of more I will come back and edit this area. If you have suggestions - post them below. Please note - I am noticing some spamming going on. Ugh - please don't spam my lense. I will just delete them - it is a futile process - really...

Ok...I am sure you are saying - EXERCISE? How? Are you kidding? It hurts? I will cause more damage - or - make it damage faster...

Look - I have had RA for about 9 years now. My right arm is frozen and I can't move my right shoulder much. But, NOW my left shoulder is starting to freeze. Everyone around me (not so much my husband anymore) keeps telling me I should get a shooter. The thing is - in my mind getting a scooter is giving up or giving in. Now, I am not saying a power chair or scooter is a bad idea. It isn't. I would like to have a power chair for when David & I go out. We try to use my transport wheelchair at times. But, it is really awful to use outdoors on pavement. This past summer - we tried to go to the Arts Festival. One of our fav things to do. It was awful for me because there were cords everywhere on the ground and that made the day very bumping and painfull for me. So, that is when I wish I had a power chair. Also - people are getting soooo rude to people like me in a wheechair. They see an over weight lady being wheeled around by her husband - and think I look fine - I must be lazy. The saying I hear ALL the time - You don't look sick...So, people don't get out of the way. I have to literally yell at people. This last time - if I didn't touch her wiht my hand on her back - I would have had a lady land in my lap. And - she looked at me like how dare you touch me! I thought how dare you not paying attention and almost land in my lap. These functions are not very handicap friendly.

Ok...getting off subject here....I wanted to put this in because I am finding moving is ESSTENTIAL when you have RA. You have to remind yourself to keep moving. And if you are stiff - sit on the bed and move the legs - arms - head - hands - everything slowly. Up - down - all around....

Now - I found a good article about moving and exercise...Some things I cant' do. But that is ok - do what you can - when you can. I am finding that when I wake up - I wait an hour or so - then I sit on the edge of the bed and stretch. Very slowly - and I filled up a water bottle and use that as a weight to lift for my arms...

Here is a link to the article... http://www.everydayhealth.com/arthritis/strength-training-moves-for-arthritis.aspx?xid=nl_EverydayHealthLivingWithRheumatoidArthritis_20110915

It has some things I can do - like...

Straight lef lift - now yes I have bad knees. My knee caps have moved - I had surgery on my right knee and I need to have surgery on my left. I keep getting tears in my knees...But, if you lift your legs slowing - it helps.

Biceps Curls - that is what I use the filled water bottle for. Again - do it slowly. And it really hurts bad - stop. But - don't stop forever. You know your body. Is it pain because you haven't moved in a while? Then try again tomorrow - and keep doing it until it doesn't hurt as much - I have found that it means you are just stiff and you have to get your body used to moving again.

There are others - my hands are hurting me so I have to quit typing...But - check the article out...AND KEEP MOVING - ONCE YOU HAVE STOPPED MOVING - THE RA WINS! DON'T LET IT WIN!