Living with a Disease and Choices

Sometimes there is so much I feel needs to be expressed about living with Rheumatoid Arthritis and making choices with this disease. My experiences with Rheumatoid Arthritis is long, since the 1980′s when my mother was dealing with it, seeing my sisters deal with it and reading other patient’s blogs, messages and social posts on how they are living with it. It is not at all easy; it is a very hard path to be on. The choices of drugs are hard, the choices of what you eat are hard, to stand or sit, can you do either? Will I be able to lay flat tonight or will I be able to sleep sitting up? Will tonight be a night where I cannot do either but are to weak not too sit and now have to deal with the pressure building in my head from my shoulders and neck being so weak. Going to doctors that claim the disease does not kill you or doctors that are confused on why you would have pain in that part of your body, there are no synovial lining there! Really?

My older sister still goes to the doctor I was seeing for the first 7 years of this disease and he is a lurker (doesn’t really post but follows social/blogs). She said he wondered if the doctor I was upset about was him, it wasn’t. I feel really lucky to have that curious doctor in my life. He gave me what I needed; a doctor that listens, discusses and gives you your options as well as tries to get a better understanding of what his patients go through. A doctor that does not follow just what the tests show or what is said in the text books. I know from many discussions with him that he has changed his practice over time as he learned how to treat his patients better. It is a rare doctor to find, it is the kind of doctor that patients have the right to fight to have. The ones that listen, discuss, are willing to learn and change. The ones that consider each patients needs and understand how different each patient’s needs may be.

At one point in my life it was my son that was so very sick. He was losing his hair and the doctor diagnosed him with Alopecia. As a mother I frantically researched as much as I could about Alopecia, but the symptoms did not fully match. Off to another doctor who claimed the same and gave me the look that I was crazy because the blood tests are fine. Then another doctor who just said the same thing. Then trying to get into another doctor who wanted to wait three months to see him and finding myself screaming on the phone that you can’t make him wait three months. My son is white as a ghost with strong dark circles around his eyes, he is barely awake during the day and when he is awake he is screaming that his stomach hurt or his legs have cramps. The receptionist says Alopecia causes hair loss, no big deal, he can wait three months. REALLY!! None of these symptoms are listed for Alopecia; none of these doctors are listening to all the symptoms. I must just be crazy right?

Finally I find myself at the kitchen table with a phone book open to the yellow pages, flipping from page to page to find a doctor that will be able to help my son. So many specialists listed in the yellow pages, but who will test for everything, who will be able to help him survive because I can see he struggling to live. Who? What are all these different doctors here to treat? Frustrated I picked up the phone and called my mother-in-law at the time. I asked her what type of doctor test for everything? She said an environmental specialist, I did not see one of those type of doctors listed in the yellow pages. She found me the number of one in Indianapolis, Indiana and I set up an appointment.

He was a strangely different type of doctor. During our first visit he explained how he had been dealing with Multiple Sclerosis and trying to use the normal drugs that doctors like him have always offered their patients. He just found himself in bed all the time, feeling sicker and more helpless. He said he decided to drag himself out of bed and go to a health food store to ask for help. Is it strange that a medical doctor that had been dishing out the drugs all his life to one day find himself in a health food store asking for help because he no longer believes the medication he is taking was not really help him enough? He said he felt a little better, but not strong enough so he went to Germany to study nutrition, herbs and now he was giving patients a more balanced approach through supplementation and prescriptions. He said he learned how to read tests different then what the labs give out as correct values. I think this was important.

He started the lab tests he needed and then handed my at the time five year old son a cup and asked him to step in the bathroom and pee in the cup, it is funny to see a 5 year old boy eyes light up as he exclaims you are going to test my pee? Then watch him turn excitedly heading to a bathroom and then see him whip around when the doctor hands me a bag and says he needs to test his poop too. Imagine a five year old boy’s delight that a doctor wants to test his poop. Sometimes boys find the strangest things to be cool.

After the test came back the doctor found he had an elevated amount of cadmium in his system. He prescribed a thyroid pill just for a couple weeks to reset his thyroid and a bunch of nutritional products to help give him what his body needed since it was overwhelmed with a toxin. Did it work? Just a couple days later my alarm went off, I was getting up extra early to get him ready for school since it was a struggle to get him to wake up enough to walk across the street to school. As soon as my alarm went off he came screaming into my bedroom, I did not even have time to lift up my head. He yelled “Mom I did it! I did it! I woke up all by myself,” with a huge smile on his face. Yes, one of the best days in my life was to see that smile. He had been awake in bed waiting for that alarm to go off.

The next visit to this strange doctor gave me some more advice. I was there so he could see my son but as soon as he seen my daughters face he told me what she needed. Garlic, yes garlic. My daughter had an ear infection. The infection was so bad that her side of her face was swollen and her ear was completely swollen shut. She had just seen a specialist that gave me some drops to put in her ear. I had tried but they would not go in, the ear was swollen shut to much and she had been on antibiotics several times before in the last month and it just was not working. The specialist was having me come back that next week to see if it worked, if not she would have to have surgery to get the ear cleaned out.

This strange doctor told me to buy some garlic capsules and rub it in my hand to warm up the oil, then put a couple drops in her ear and rub the rest of it behind her ear and down her neck. So when I got home that is what I did. Fifteen minutes later all the swelling was gone, I could see in her ear and she was smiling and playing once again. From that day on whenever my kids were grabbing at their ears, I would just force them to smell like garlic for a day and never had to get them an antibiotic or see them suffer from an ear infection again. I did take her to that next appointment with the specialist. He was happy to see that the prescription worked. I told him it didn’t and that this other doctor had me try the garlic. He scuffed and told me I was wrong then left the room.

It is funny how some doctors just will not accept that people need better doctors. The type that are willing to learn balance and listen to patients instead of just the books they have read. My point of telling this story? I don’t think good doctors can just follow what a book tells them, what schools have trained them to do, what one organization gives them as guidelines. We need doctors that can learn from their practice, learn from other countries, and follow more then just one organization’s guidelines. We need doctors that can give us more balance. Why aren’t they asking what are you eating? How much exercise are you getting? What kind of exercise can you do? Why aren’t they checking vitamin levels? How about comparing them to people that are healthy and strong? How about some standard allergy testing to help eliminate foods that may be causing some issues? I know I learned I am allergic to shell fish and it triggered my worse hip flare and lasted many months.

How did my son get that toxin in his system? Well around a month after he was much better and you could see it in his energy, skin color and smile, the babysitter he had that past summer came up to me frantically in front of the school. Her daughter was getting sick and wanted to know what the doctors did to fix my son. She confessed a crop plane had sprayed them both down. She had done what poison control told her and gave them a bath. She confessed my son was in front so he got most of the toxins sprayed on him. I told her he seen an environmental specialist that prescribed many vitamins and herbs.

Some may ask why haven’t I just found that magic nutritional product to get rid of my disease? I have tried; for my first 3 years I took many different nutritional products, even that chicken stuff Kelly of RA warrior wrote about. It did not work for me. I have also heard it may be the tomatoes, corn or milk or other food I am eating. I have heard of the people that found they were allergic to something and cut it out of their diet and that worked for them.  I have a sister that does Enbrel and believes cutting out gluten has helped and another that just does massage, getting her back cracked and the natural route who has the greatest pain at the base of her head. The choices are hard and some are lucky to find that cure or that one thing they are allergic to. Some are lucky to find that it was the corn or the milk. But it does not mean it works for everyone. The choices are very hard. If you have found remission by diet change, maybe moving to a different location for a climate change or air quality please leave a comment here so others can hear your voice. We need to hear your voice! Some things I have had allergic reactions to shell fish, pollen, metals, rubber materials and even had my fingers swell up after picking up what seem to be a leather wallet, maybe it was not leather? Maybe I am just very delicate? What has made you flare?

I believe the only way we will get clarity to this disease and others is to have better doctors. Doctors that are willing to not follow the tests results exactly, ones that listen, and ones willing to grow. But I believe we can only get that if they can hear what you have to say, say it at your visits, say it on Facebook, say it on Twitter, say it here, say it on, and say it on Rheumatoid Patient Foundation. We need to hear your voice! We need you to speak out now! I know it is hard, I know you are weak, I know you may not be able to get enough lift out of the brain fog to be able to write. Even if it is just retweet on Twitter or liking somebody’s comment on Facebook, speak out! Speak out now!

I also know how much music can help bring some peace when the pain is hard. So here is something I have learned about social spaces like Facebook and Twitter. While I have 500+ friends on Facebook and in my hardest pain screamed out for soft music because I was wore out on the soft music I had, nobody reached out to give me a song. But the first time I gave a song on Twittter and I #rheum it. Someone gave me Norah Jones – Toes, which was a precious gift so quickly given. There are many Rheumatoid Arthritis patients listening, just add #rheum on your comments so we can hear your voice too. But here is a song for you now:

“Light up, light up
As if you have a choice
Even if you cannot hear my voice
I’ll be right beside you, dear

Louder, louder
And we’ll run for our lives
I can hardly speak, I understand
Why you can’t raise your voice to say”

Please we need to hear your voice, please do what you can. If you can afford to donate to Rheumatoid Patient Foundation, I have faith that Kelly will also hear your voice and demand the changes we need. If you cannot afford to donate please speak up so we can help you get what you the treatment you deserve. For those days when you are weak, Like on Facebook and Retweet on Twitter, others might be saying what you are to weak to think to say, be sure you are being heard even by simply liking another’s Facebook comment or retweeting comments by others that are speaking what you are to weak to say. Something that seems so weak to just retweet or like a comment, please know it can be just as  powerful as you saying those words, give us your voice any way you can.

5 Responses to Living with a Disease and Choices

  • Kimberly S Byrne says:

    Excellent tonya! Wow, so much information and fantastic ideas!

  • Jenn says:

    I sooooo need one of those good doctors right now. Looking for my fourth one. Where are the more up to date doctors??

  • Tanya Martin says:

    What area are you looking to find one in? When I first started seeing the good doctor, I drove around an hour and a half to see him. It was hitting my feet the most back then….do not think I could drive an hour and a half now.

  • Tanya Martin says:

    Thanks Kim! Sorry I just seen I missed approving your comment, you comments should be instant now.

  • Anne says:

    I have severe RA, big fat swollen knees that have been aspirated over 15 times. I have had allergic reaction to biologics and nasty side effects from a lot of other RA meds. I knew diet had something to do with my RA when I got sick from something, probably cutting my prednisone too fast or food poisoning, I do not remember, but it gave me some relief, some swelling went down. I think many of us RAers are foodies and use food to comfort us, hey who doesn’t. I am thin and I defiantely do it. HOWEVER, I really believe that many RAers would really benefit just getting a juicer and juicing fruits and vegetables only for a week. You will see some change , I cannot begin to tell you how bad my labs were, sed rate in the 50′s, crp at one blood draw 1020, that was not normal it was usually around 230-340 isn’t it suppose to be 2-20 , PAIN PAIN and MORE PAIN. The Juicing thing is stinking HARD, its no fun, there is one thing that makes it ok, at the end of the day my knees that do not bend NOW do bend and my nodules have gotten smaller . I want to tell those with RA you might try the juice fast and fail the same day you start it, that is ok I did so many times. I just wanted some comfort food, I am in pain I deserve it. But if you make a small goal of just one day or just ten minutes at a times and get through the juicing you might just see improvements like I have. Hardly anyone goes into remission from RA , so there is nothing to loose and so much to gain.
    I wanted to quit so many times and say food is not the casue of my RA because the reality is that it is too hard for most people to eat only fruits and vegetables for week, but in the end it is well worth it. I don’t want to be a cripple for the rest of my life, I want to run again. Lastly, I am a patient and I am sure there are some that have arthritis from infection or chemicals, but my opinion is most of it comes from stuff we call food, heck if some foods can cause cancer why can’t they cause RA too. God Bless you.

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Faces of Juicing Book
Biotinidase Deficiency Not RA
Diagnosed with Rheumatoid Arthritis in Dec 2003 because of joint pain and fatigue. Found out on July 19, 2013 that I really was profoundly low on Vitamin B7 because of a rare disease called Biotinidase Deficiency. When I found out I was very weak, hardly could get out of bed, could not turn my head without getting light headed, dragging my feet when I tried to walk, struggled to breath daily for years and was having many many other issues. From the first 24 hours of taking Biotin my symptoms started to disappear and my body started getting stronger again.
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