Is There Hope?

Anyone can fake being sick. It takes a strong will and a lot of strength to fake  being well. - Post by chrysti on Boldomatic

I have a disease that can take up to fifteen years off my life expectancy, and I happen to find this highly inconvenient. I have been setting the age of my demise at 80′-something, so fifteen years less would mean I could say bye-bye with 65, which is just not an option. Don’t you dare cheat me out of my years!

As usual, I am hiding behind humor and sarcasm, it has worked fine so far, so let’s just go on with it! The truth is, hearing about it took my breath away. Everything about this disease has either left me speechless, or it seems to suck the air out of the room I am in. Is there a word for it?

Then there is the other side in me, the one I cannot shut up even if I try hard. “Aren’t you lucky? At least you know what you are dealing with, other people don’t.” Sometimes even I can’t stand my optimism.

I remember when I got diagnosed. July 2014, the doctor called me when the test results were in. We were having lunch at a Chinese buffet restaurant, I had a plate full of fresh-made Sushi in front of me when the phone rang. I saw the number and excused myself, I mumbled BAD RECEPTION and walked outside to the car. I wanted to be alone. I had a feeling what she was going to say and she did not disappoint me. “Rheumatoid Arthritis,” she said and tears started running down my face. I had read up on it for days, ever since the possibility of having it had come up.

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RA, an autoimmune disorder, so often mixed up with regular arthritis. One more person telling me, “I have arthritis too,” and my head will split open. But can I blame them? We don’t know anything about diseases we never had until we actually have to deal with it. We don’t know how cancer feels like, we don’t know how a mental disease, or cardiac surgery can affect your life until we have to deal with them. Human nature, or human shortcomings. No matter how hard we try to walk in each other’s shoes, we can’t feel what other people feel. We say we know, but we don’t. We imagine and we don’t even come close.

Arthritis vs Rheumatoid Arthritis: One attacks the bones, and while painful it can be kept in check with medications and in severe cases with surgeries, the other one is an uncurbable disease that attacks your joints and organs. From small joints -fingers and feet- to larger joints. The spine, the neck but it doesn’t stop at your joints, it goes further to your lungs, heart or brain. An ongoing inflammation in your body is caused by something we don’t know. A 24/7 war inside you. Your own body attacking you.

14 Memes That Nail What It's Like to Have Rheumatoid Arthritis

Stiffness, a pulling sensation and pain that cripples us to the point that opening a water bottle can seem like a real task and turning a doorknob bring us to our knees. Walking becomes a task. We feel fatigued, not just tired, but the feeling one has when you have the flu. Taking a shower leaves us winded, cleaning the house seems impossible. Depression and balance problems. They call it the PULLING DISEASE and now I know that it is the perfect description. Every tendon in your body seems too short, and you are pulling against the shortness at all times. Lifting an arm seems like you are running a marathon, walking upstairs almost kills you, and even laying in bed hurts. Physical activities leaves you sore for days. Headaches that you could get a patent for, eye problems, sinus problems. It is a long list, this disease doesn’t leave a stone unturned. It knocks your socks off.

Arthritis Humor

“Rheumatoid Arthritis, the sickness doctors don’t want to have,” I read. “Chickens,” I say.

There are medications, which of course won’t cure us and most of them only help temporarily. The expensive ones, the injections costing thousands of dollars- to make sure the poor and the uninsured in this country will never have excess to it- seem to give us relief but they come with heavy side effects. The cheap solutions: Hydroxychloroquine, a malaria medication that can cause blindness, steroids and heavy pain meds are often more effective. Chemotherapy drugs, taken for a lifetime.

People with RA meet on a website called MYRATEAM. Only there can they find people from all over the world who can understand their misery. I signed up looking for alternative treatment options, but the sad news is most of them don’t even want to try an alternative lifestyle if it requires a little bit of discipline. “Give me a pill and meds, don’t make me give up what I love.”

It shocked me beyond belief. I needed to see how bad it can get, to get myself in gear.

These days I only log in when I am tempted to give up my Hippie Lifestyle.

So the good news is I know what I will die from -if I am not shot somewhere by a moron with a gun who shouldn’t have one. Bad news, I am not willing to accept the verdict! I appeal! “Screw you RA,” I say, “go away!”

I was -still am- on a mission, and speaking a few languages gave me opportunities others don’t have. I went on a quest to find alternative treatments all over the world, and I hoped to get answers to some of my questions.

I met amazing people who shared their wisdom freely with me. I met doctors in other countries who listened, without charging me. I listened and learned.

Far, far away, there was light at the end of the tunnel.

She's A Rheumatoid Arthritis Warrior Support Rheumatoid Arthritis Warrior  Gifts - Rheumatoid Arthritis Awareness - Sticker | TeePublic

To be continued…


I will write about it for a very long time, not every day but frequently, because now I can and who knows, perhaps it might help someone. I will write different posts, sharing what I learned and sharing the way I live my life now. It all started in the kitchen!

A very humbling journey.

.

13 thoughts on “Is There Hope?

  1. Pingback: Chemotherapy or Chemo Drug? | The happy Quitter!

  2. So glad you had the access to more sources all over the world. We are not always right in our medicate, medicate, medicate world here in the US. Wishing you low pain days!

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  3. The description of your plight led me to dig a little deeper. Arthritis is an inflammation of the joints. It can affect one joint or multiple joints and surrounding tissues. There are hundreds of different types of arthritis.

    I already knew something about the first part this description from personal experience with osteoarthritis. Looking at the second part of the description I understand all the physical problems both of my mom’s parents had were probably related to arthritis. From watching too much TV with all the commercials and doing my digging I now know why all the different drugs for the different types are constantly being peddled on TV.

    I also know that inflammation causes so many problems throughout the body and is very very hard to control often because the cause may be unknown. I think also sometimes when that problem is fixed somewhere a different type of the same problem shows up somewhere else. There is no one size fits all solution. So keep on experimenting on yourself! I already knew you are one of a kind!

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    • Arthritis and Rheumatoid Arthritis are not the same. I was hoping to make this clear in my post, yet it seems I failed.

      Osteoarthritis, the most common form of arthritis, involves the wearing away of the cartilage that caps the bones in your joints. With rheumatoid arthritis, the synovial membrane that protects and lubricates joints becomes inflamed, causing pain and swelling. Joint erosion may follow.

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  4. I’m very sorry to hear of your diagnosis, Bridget. I have watched close friends with RA and know a lot about their pain and the struggle to find the right medications for their particular needs, but even as I say this, I’m aware that no one has identical obstacles, needs, concerns or outcomes when it comes to disease. Each person is a little out their on their own, and I like to hear that you are doing so much to search for information and be proactive. I do know this, and whether or not it gives you a better sense of things, I can only hope. But my friends are tapping on the window of 80th birthdays, and they were diagnosed decades ago. They, like you, are very proactive and search until they know they’re doing the best for themselves that they can. I am glad you felt you could share with us, because I honestly do care. This isn’t a simple disease, and it can be a burden. I read above that you didn’t take “no” for an answer. I think that says some really wonderful things about you. xx

    Liked by 1 person

    • I got diagnosed in 2014, so I live with it since a while and what a rollercoaster ride it was -still is.

      I too hope to still stand upright and tall on my 80’s birthday. I did do research for a very long time and the results literally floored me more than the diagnosis itself.

      Of course, I couldn’t get a simple disease, but then on the other hand, is there one?

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  5. I know that it affects women more than men, and no one knows quite why, and that there are new drugs called biologic agents which are effective at sometimes stopping the destructive process. They are, however, very expensive. I pray that the progress of your disease is slow Bridget and that you manage to get some respite from it.

    Liked by 1 person

    • I appreciate it Cindy. I am dealing with it since almost seven years and I am doing alright. I didn’t take “No” for an answer, perhaps the one time in my life when my stubbornness really paid off. 🙂

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