I'm lucky

Today is my 18th anniversary. At the age of 20 I met this amazing man, he made me feel beautiful, he made me realize what my potential was and helped me achieve it. My husband and I met through a mutual friend, and it was instantaneous love at first sight. It didn't take us long to realize we were made for each other so we married very quickly, because when you meet your soul mate you don't want to waist another second apart.

Many didn't think we could do it or thought we wouldn't last. It is nice to be here 18 years later and prove them all wrong. It still amazes me how much stronger our feelings have grown and how much closer we have grown together. I was young when we wed he was a bit older and I feel that we did a lot of growing together, both as individuals and as a couple. Our journey has been amazing. 

Now that my Rheumatoid Arthritis is active and rapidly progressing my husband has had to help me out a lot. We are living the in sickness part of our vows and he is proving all over again how lucky I am.  

He has done a lot of basic things like cooking more, having the girls help with that and cleaning. He put lever handles on all our doors (I highly recommend anyone with RA to do this). He has bought techie toys like iPad and iPhone to make things easier on my hands. He worked with the insurance to get me a manual and a snazzy electric wheelchair. The list goes on and on and I will try to make a blog about some easy assistive devices another day. 

I want to take a moment to publicly thank him here on my blog and to tell him thank you for loving me. I hope everyone has a great day...I know I will :)

Continuation of there is No Cure

If there is no cure for Rheumatoid Arthritis then why can we search and find so many pages that tell us that people are being cured of RA?

There are several reasons behind this problem that we encounter and unfortunately there is no way to fix all of them. But we do have an option The International Foundation For Autoimmune Arthritis has a page where we can report any article, advertisement, column or broadcast that is providing false or misleading information about Autoimmune Arthritis I will attach the link at the end of this page. They have corrected pages already thanks to people like us sending them in.

I will talk about a few different reasons that we find so many pages with claims of cures or remission.

1 The biggest problem and probably the easiest one for others to make is people referring to Rheumatoid Arthritis when clearly they mean Osteoarthritis. Now this is a clear sign for those of us living with the disease to stay away from any recommendations the page makes we know they have no knowledge or education in our disease. The hard part is people not living with our disease come across things like this and believe it as truth. Dr Oz is a big one that so many people believe he is an expert on everything and he has made exactly this mistake (he did correct it in a short sentence on his page) but the people watching that show now believe obesity can cause Rheumatoid Arthritis.

2 With that I will lead straight into #2 the sentence I just wrote Obesity can cause Rheumatoid Arthritis, which again is incorrect obesity can lead to osteoarthritis, anyways that could possibly now come up out of context if someone were to directly search those exact words. To many people that is enough they don't go to the page to read the whole story to realize that is not what was truly being said.  I think this happens a lot more than we realize. People don't have a lot of time they skim they find what they think are their answers and then they share and share and share again. Seeing the pattern yet?

3 This is the one that hurts me the most because it has to do with lying. I hate lying I always have as a child my stomach would get so upset when I knew someone who had told a lie. I have never been able to lie, it's just not part of who I am. I am a person with a really big soft heart and Lies really hurt my heart. So here it is #3 Salesmen are being paid to research diseases and post how it cured their ailment and post often. They want their product to get the most hits with search engines so they make up consumer names and stories and boost their own product. 

4 This is something my rheumatologist talked to me about because I asked why do we see so many claims of cures and remission with internet products. She said that there are many Drs who diagnose patience with RA without adequate blood tests etc and that patient may not have had RA to begin with, sadly this happens a lot. Then the misdiagnosed patient takes some supplement and wham they're cured! Well of course if they never had it to begin with. I'm not saying they didn't have something wrong with them, and I'm not saying that the supplement they used didn't make them feel better, I will say I am happy for them that they found something and got better. The unfortunate part is that now they go around stating that they cured their RA that they most likely never had. 

5 This is my favorite because it reminds me remission is sometimes possible, though not the norm it is sometimes possible. I need these small pieces of hope to keep me going sometimes. People who go into remission because sometimes people are lucky that way and before they went into this remission they tried let's say gluten free; so because these simultaneously happened they figure they were cured. They go all over and shout it from the rooftops, I mean wouldn't you if you thought you had something that could really help us all. They get on all the chat groups and tell everyone how great they feel and how you can do it too. But it is Rheumatoid Arthritis and the other shoe has to drop right...I have had a person who came back to a page I frequent and apologize profusely she went gluten free and found she was feeling great cured of Rheumatoid Arthritis and had ranted to everyone you must try it it really works etc. well unfortunately for her her RA flared up again with a vengeance, while she was still living a gluten free life. So the poor thing had to come back to her groups with a little egg on her face, but I feel she is an amazing brave woman for coming back and letting us know she made a mistake and she was sorry, kudos to you I'm proud to have you in our mixed circles. I have also seen others who have made the same mistake and have returned to the groups to let us know they were mistaken.

I am sure there are other ways these postings come about and become so popular that we worry all anyone will ever know is how rum soaked raisins cure your arthritis. We worry the lies will outnumber the truth. So what we need to do is RAISE AWARENESS...SPEAK THE TRUTH...talk to people and let them know what it's really like, what this disease Rheumatoid Arthritis really is: daily fevers, flu like symptoms, fatigue (like you have never known), pain in every joint in your body, headaches, hearing loss (yes there's a joint in there too), organ damage from swelling, heart disease, rheumatoid lung, the list goes on and on even death.

Here is the link to report misinformation to IFAA (International Foundation for Autoimmune Arthritis)
http://www.ifautoimmunearthritis.org/Awareness_Hotline.html

Thank you for visiting my page. If you want to stick around you can follow my blog, sign up to get emails when a new post is written, and now I have started a facebook page so look for me RA_Gal. Have a great day everyone. 

There is no cure, but thank you

I am not sure if this happens to people with other diseases or if for some reason Rheumatoid Arthritis is really targeted. I run across so many people that have no idea what this disease is and assume its osteoarthritis, but then there's the others....

The well meaning I have a friend who has a 7th cousin twice removed who used rum soaked raisin and cured their RA, or honey and cinnamon, cherry juice, losing weight, cutting out sugar, gluten free, magnets, ginger, green tea etc etc.... 

Do people diagnosed with diabetes get random people or even friends and family telling them cut out sugar or change your diet and you will be cured. Or how about people with cancer are they told to go gluten free to cure their cancer? I don't think so...why are we so targeted? (On a side note: My Mum passed from Breast Cancer and I never recall anyone telling her crazy cures like these, my Dad was diabetic and I never heard anyone but his Dr discuss his diet with him, so I'm not using these as suggestions without some knowledge about them and am definitely not trying to offend anyone). 

We all have someone who has suddenly become an expert that has tried to cure us with snake venom, or bee stings right. They know someone who knows someone who cured themselves or they read it on the Internet because everything you read on the Internet is true right. 

I'm here to tell you I have sadly tried some of these things. I mean some of them really sound like there is truth to them right, experts back it the web page says so. 

Lets talk about the stuff being sold, special "natural" supplements, vitamins etc...if you really think something sounds great first realize people are paid to promote these products. There are people who get paid just to go out and promote a product on websites. If there are experts listed by name who promote the product do a search on them. What can you find about them? Do they actually promote that product on their professional page? Search the products reviews (not just on their page), check the better business bureau, WOT (web of trust) etc.

If you still feel this product seems legit ask your Dr. Please always ask your Dr before trying anything even if its promoted as natural, even if it is natural, even if others with RA are telling you it works for them....ASK YOUR DOCTOR. 

I so often run across well meaning people suggesting dangerous supplements on RA chat groups and help pages. Always alway always ask your doctor. 

I have tried the gluten free diet and an elimination diet to see if there are any foods that trigger or flare my RA...I am sad to say after the grueling process I still have Rheumatoid Arthritis...I was not cured by changing my diet. On the other hand I do believe some people find some relief by changing their diet and eating healthier. I did make some changes in my own diet and am eating cleaner and healthier, but again non of this has cured my Rheumatoid Arthritis, I have not accomplished remission with these changes, honestly I can't even say that any of this reduced my pain or inflammation, but I do feel healthier as a whole for making these changes. I feel each individual needs to find what works best for them. 

The biggest thing I wanted to help was my fatigue level and I actually did find something that helps a little and it is exactly the opposite of what everyone is trying to tell us to do....Carbs lots of carbs and gluten help my energy, but I'm not talking about boxed pastas. I have a local bread shop that uses no preservatives and all natural ingredients and healthy grains in their breads and I find after eating the bread I have increased energy, and if I eat it on a regular basis I feel a difference. 

Again what works for me might not work for you, every person with Rheumatoid Arthritis is different, that's why this disease is so hard to treat. Listen to your body and your Doctor. 

It's the handicapped stall not the pooping stall

Alright it has to be said...It's the handicapped stall not the pooping stall.

There's a reason it's a handicapped stall. The toilet sits higher for ease on knees and hips and the bars are there to assist us in getting up safely and in transferring from a wheelchair. The stall is bigger to fit our wheelchairs, walkers or other assistive devices. We the differently abled (my new word for handicapped) need these stalls to be able to function independently. We do not want to have to ask for assistance as we sit at our most vulnerable with our pants and undies at our ankles because we had to use a non handicapped stall. We need the higher toilet, we need the strong supportive bars, we need the room for our wheelchair etc. we need the handicapped stall, but we hardly ever get to use these stalls. 

We the differently abled do not get to use the stalls that were specifically made for us because someone long ago decided that it is the biggest stall, it's usually at the back of the bathroom so they think they have better privacy and they use it to poop in. I mean seriously this used to be a small minor thing only a few we're brave enough to challenge the handicapped sign on the door, the bathroom was probably quiet and empty they could have chosen any stall but they want the big one in the back where you think your hidden, but you're not...

We know about you we know about your sneaky hidden pooping stall. We know because we have to sit in our wheelchair and wait for you to come out, and you take forever and I have to be honest the smell is not pleasant. We know what you did in our special stall that helps us stay independent, helps us still feel capable of doing some pretty private things all on our own. You don't have a need for the handicapped stall you just think you can get away with using it. 

This is kind of a funny post I know, but it is a real problem for us who are differently abled. 

Please if there are other stalls available and you are not handicapped use them. There maybe someone coming into that restroom that really needs that handicapped stall. 

For those of us that do need the handicapped stalls I almost feel like we should politely remind the able body people who come out of the handicapped stalls that we are physically unable to use a regular stall and would appreciate if they could keep us in mind and keep our stall for us. 

I now notice the changing tables are being placed in the handicapped stalls. A lot of times these are left folded down, it is not easy to get our chair in and fold this out of our way, plus it means another long wait time for a mother in there changing a dirty diaper while we again wait.  I suggest we write a letter to the management of all companies we see this new trend in, especially if there is only one handicapped stall in there establishment let them know how difficult it is for us. Also I would add to mine being on the chemos my immune system can not fight off the germs on that changing table if I have to fold it out of the way. 

We have to fight for better handicapped accessibility everywhere we go so why not start at the bottom. Sorry I love puns and also like ending things on a positive note so hope you all love dorky puns as much as I. 

Thanks again for stopping by my little blog, I hope you enjoyed yourself. Please come back and visit. I promise they will get better. If you really are craving more remember to add me to your favorites and follow my blog. You can sign up to follow me and to receive emails of new posts if you prefer. Should be easy access links to both just right there on the right hand side of your screen towards the top of my page. Thanks again everyone 

The dreaded decent into mobility devices.

     My worst joint has always been my left hip. Yes how dare my RA not be the typical RA that starts in the hands so we know exactly what's wrong. Well now my hands are quickly trying to take over first place, but for now it's still my left hip. When it's your hip that's bad sometimes you have to use mobility devices to get around. So at age 35 I had to get a walker, oh yes it was one of those really sexy old lady ones with a little basket and a cushy seat. Obviously young and in the prime of life is not their target audience. I am not surprised but would we not pimp this out somehow, paint job some cool rims something. Nope the coolest one I could find was electric blue. Oh well not like I'm trying to pick anyone up with my sexy walker right.
     I tried to move quietly into the mobility devices world, thank goodness this thing doesn't have pipes like my husbands harley, but you still have this very large device that works as a neon look at me sign. Well here's the funny thing with a walker I am a flashing neon sign, but somehow once I had to move into a wheelchair now and then I am suddenly invisible. Or maybe it's that people see it as a challenge, lets play chicken with the gal in the wheelchair who's going to move first. The worst part is when they look you right in the eye and then completely cut you off.
     So I'm getting ahead of myself. Last summer my husband said we need to get you an electric wheelchair. I said no way are you kidding, I can walk just fine. He said yes but can you take the kids for a fun day at the zoo or take hikes or numerous other examples anymore...I did see his point but somehow this was a really hard step for me I could see the pros to getting one but did I really want to admit that I was at this point in my disease. To me somehow this seemed like I was admitting defeat.
     I finally agreed with the threat of our insurance changing in a couple of years and many other factors now was the time to make that big step. Have you seen how many electric chair options there are now? Scooters, mobility chairs, electric wheelchairs, my head was spinning with choices...thankfully my salesman works on commission which reassured me he would get me the most expensive, I mean best possible model for me. I learned a few things during this endeavor. Number one is your insurance really doesn't care about your quality of life. You can be trapped in your house for the rest of your life and they don't care. Thankfully the times that my hip has given out on me has been in my own home, which helped make it a safety issue so the insurance company started to take us seriously.
     So long story short and hopefully not to sporadic ..high pain level means somehow my thoughts just don't connect right. I did get an electric chair and a manual wheel chair. Because insurance companies don't care if you ever leave your house again or even go outside of your own home, we have to pay for any ramps ourselves. We also had to upgrade my vehicle as my car was to small to fit the chair into it, but the plus sides really outweigh the negative. I take my kids to the zoo again and so many other places that I just could no longer do. So it has been so worth it to take that leap into the world of mobility devices, now if I could just get them to pimp my chair I need to get Kounts Kustoms or something to help me out because it's just not cool enough for me yet.
     I should have said first and foremost if you haven't done so yet get yourself a handicapped placard! Someone told me right in the beginning to get one and I am so thankful they did because it has been such an energy saver and I'm sure saved me from a lot of pain. No getting a placard is not going to make you pain free, but anything that saves us from a bit of pain is so worth it. You know those days you go to the grocery store with energy and by the time you are done collecting what you need, right before you get the registers the energy troll comes and just steals it all, you are practically crawling those last few feet. You look back going what the heck just happened to me and where's the semi that ran me down. Yes on those days you will be so happy that your car is parked closer. The other thing I have learned is when I have my wheeled friend with me (sexy walker or wheelchair) the handicapped spots will have a ramp to get you up on the curb. Well usually they will, I will save that rant for another post.

Taking off the mask

Did you know that every day an arthritis sufferer wears a mask? That's right we usually try to hide the pain we are feeling, the sickness the everyday tears. Why do we do this? No one can really say...I guess my reason is I feel like people would get sick of it, I mean hell why wouldn't they I am sick of it and I live it day in and day out!
Imagine breaking a bone, now you've got the flu on top of that broken bone, but it's every bone in your body.....So basically a cool story would be I was on this amazing ski vacation and an avalanche came and swept me down the Mt breaking every bone along the way and it took hours for rescuers to dig me out so I ended up with pneumonia on top of it all....yep that's how it really feels, except our bones don't heal, our flu/pneumonia doesn't go away this is everyday for the rest of our lives, the other sad part I don't have a cool story behind my limp. Stranger 'oh did you strain your hip?' me cool answer "No my body is just trying to kill me"...real answer "I have Rheumatoid Arthritis" stranger 'aren't you to young for that' or 'oh ya I have that in my knee' good comeback would be "oh no really, I'm sorry for that, have you started chemos yet because you know it can kill you" in reality I just say "oh sorry to hear that" and walk away. It's always after I walk away from this encounters that I come up with what I should have said, kicking self I could have raised awareness. Oh well I just go out with my smile on my face and when people ask how are you "I'm good" because really who wants to hear I am fevered today (they'll think I'm contagious) I am trying to get everything done before my fatigue knocks me to the ground and my pain makes me unable to put together a complete sentence let alone try to get up and walk..."I'm good" such simple words, what's funny is I have never been a person who can lie, but now I do it almost on a daily basis with two little words "I'm good"
For anyone who knows me please don't make me tell you how I really am. It embarrasses me, somehow I feel weak. Don't ask me what you can do to help, the list is so long I don't even know where to start. Want to really help me? Bring a dinner for my poor family that has to make it all the time, come pull a few weeds so I can at least look out my window to beauty, but please don't ask me how you can help because honestly one of these days I may answer you honestly and scare the pants off of you ;)
How am I really doing right now, I have been in a constant flare, I don't know how much longer I can honestly live like this, but my Husband and My girls always make me laugh and make everyday worth it. Right now my meds aren't working, but I am trying I will never stop searching for something that will work for me. Right now I am treading water, but trust me when things change you will hear about it...I will be shouting it from the roof tops!
Thanks for checking out my little blog, I hope you enjoyed your stay. Small disclaimer I did not make the photo above it has been shared and past on so many times that I can not track the original maker so please count this as giving you credit for your amazing pic.

What is RA anyways

I figured I should write a little bit about what RA is. Rheumatoid Arthritis is not your grandmothers arthritis. I know a lot of people hear Arthritis and think of old joints wearing out, that is osteoarthritis not Rheumatoid Arthritis. Rheumatoid Arthritis is an autoimmune disease. Autoimmune diseases are the result of your body mistakenly attacking itself. Yep that's right my body is at war with itself. Rheumatoid Arthritis (RA) attacks your joints and organs, it is a chronic inflammatory disease and so far there is no cure. RA often looks different from one person to the next, so I will tell you some about My RA.
I have low grade fevers daily, debilitating fatigue, malaise (flu like symptoms) and pain. I have to say the hardest part of RA for me is the fevers and fatigue. I have a high pain tolerance  (I went through childbirth twice naturally and yes I meant to). I can push through the pain and get things done, heck I can even go out and have fun through the pain. The fevers and fatigue kick my butt every time though. I just feel like I am trying to do everything while walking through quick sand. Think of how you feel when you have the flu, can't really get much done right, but my flu never goes away. My RA doesn't respond well to the medications that are out there, and if one does work it usually becomes less and less effective until it just stops working all-together.
The medications for RA are chemotherapies, medications that kill your immune system in hopes that your immune system stops attacking you. Since my diagnosis in 2008 I have been through 8 medications, granted one of those I was allergic to, but still 8 medications in 5 years I really need to slow down one day there will be no more for me to switch to. Right now I am waiting for my latest medication to start working, so things have not been going well for me. I am fevered, fatigued and basically feel like every bone in my body has been broken, I haven't been able to do much of anything. I have my next infusion next week and I am really hoping to start seeing some improvement, anything at this point would be wonderful.
There is a bit on RA hopefully you learned something. Short and sweet for now, because trust me there is so much more to all of this, but for now the pain in my fingers is telling me to stop typing and for once I'm going to listen. Trust me there will be more...