| Hi, My name is Gloria, Christmas of 2000, I had surgery for a herniated disk. By February 2001, I was having aches and pains, low-grade fever, fatigue, trouble sleeping, and just felt constantly sick, like I had the flu. I was having trouble holding things. My toes would curl under. Some days it took everything I had to get out of bed. Two years and 6 doctors later, I finally saw a Rheumatologist and found out I have Rheumatoid Arthritis.
I have done a lot of reading and surfing on the Internet to find any information that I can to help me deal with RA. I have found some really great websites with information on RA that has helped me. I have included these websites in Links. Please visit these links, as they were the main reason I decided to do this webpage. These websites have accurate and informative information. You can, as well, receive free information, brochures, booklets, from most of them. BEWARE that you don't just do a search in google, netscape, etc,for RA and then believe everything you read. As a rule, if a web address ends with com, it is an e-commerce site. Translation, they want to sell you something. Org, gov and edu are information sites. Cause of RA is Unknown. Rheumatoid arthritis is an autoimmune disease that causes chronic inflammation of the joints and also affects the eyes and organs. Because it affects different and multiple areas of the body, it is systemic. RA is progressive and at this time there is no cure. Here are some things that I have learned either by research or experience. YOU AND YOUR BODY: You know your own body better than anyone else. If you do not feel right or think something is wrong; don't give up. There is a doctor out there who will figure out what is wrong with you. Don't listen to, "It's in your head." It took me almost 2 years to find out I had RA and I found out later that it takes approximately 1 1/2-2 years to diagnose it. At the time, I was really disgusted with Doctors. After having time to reflect and research, I now realize that the symptoms of RA for each person are not the same and there are so many illnesses that it could be. By the time I saw my Rheumatologist I had 2 years worth of tests and took the results with me on my first visit. The best advice I could give anybody is keeping a diary. By the time I finally saw my Rheumatologist I had over a years worth of notes. Each day (well, maybe not every single day) I would write down my symptoms and if I had a fever, stiffness, etc. I also kept notes of Doctor visits, tests done and results. I always picked up the results of tests I had done, made a copy and kept them in a folder. I took my folder and trusty diary to my family doctor, internist, gastro dr, infectious diseases dr, neurosurgeon, another internist, and finally a Rheumatologist. The cause of RA is unknown. By the time I saw a Rheumatologist, I was sick of doctors and was starting to get an attitude!! I knew something was wrong, but I felt like I had to convince a Doctor something was wrong. He ordered some tests and had a diagnosis within a few weeks. He will forever be my hero! YOU AND YOUR DOCTOR: I would recommend seeing a Rheumatologist once you are diagnosed. That is just my personal preference. They are definitely more informed with RA and all of the treatments available. You also need a good primary doctor, who realizes that you may be on numberous medications and may be sick frequently. My family Doctor has a family member with RA, so he is very understanding. You need to have a good relationship with your Doctor. There are so many changes going on in your body and questions that you need answered. You need a Doctor who will listen. If he is standing with his hand on the door, find a different Doctor. Since Rheumatologists are specialists, they are few and far between. Don't be surprised if you it is hard to get an appointment. The RA medicines take awhile to work and if you have any problems you can call their office. It is always a good idea to ask exactly what they want you to call and report. It is also good to have a doctor that believes in pain control. I think if you are responsible with pain medication, it cannot hurt to take it. I take it only if I have to, sometimes too late, because I am trying to be careful with it. Last year I was in the hospital with chest pain and was given Morphine. For about 2 hours I was totally pain free, no pain anywhere, and it was the most wonderful feeling in the world,(haha) but it is too addictive to be used for RA pain, soooooo it was nice while it lasted! Ask your Doctor about Tramadol (Ultram), it is a non-narcotic pain pill. As of April 2007, I am taking Avinza. It is a morphine derivative and is said to be not as addictive as Loratab or Percocet. Before you go for an appointment write down any new symptoms, and any questions you might have. Write down anything, no matter how insignificant it may seem to you, it may be a symptom that goes with something else. I have been bloated and also have developed a "hump" on my upper back. Both, in my case are caused from Prednisone. Yes, I have gained alot of weight. I don't need you to tell me! Today, I will not take prednisone. It effected my immune system; I was constantly sick and therefore couldn't take Enbrel. Write down any medications you are taking, including over-the counter medications and vitamins. Do not take over-the-counter meds or vitamins, unless your Doctor has advised you too. The can react with your prescription meds. YOU AND FAMILY, FRIENDS, AND THOSE "OTHER" PEOPLE: I have been very fortunate to have a husband, who is very supportive. He believes in "until death do us part." He reads a lot of information on RA and if he finds something new, he let�s me know. He also understands that I get tired easy, am in pain, and get grouchy (yes, I think this is the word I will use) and that I can have side effects from some of the medicine. It is hard for us to make plans; since I can't control flair-ups. Before RA we use to go to Atlanta about 4 times a year to see the Braves play; now we watch them on TV. I am lucky somedays if I can walk to the mailbox. I can't imagine trying to walk into the stadium. We make the best with what we have. You can't mourn what use to be. I also have some really great support from some family and friends. I have family members that have Gout, Lupus, and Psoriatic Arthritis. They definately understand what I am going though. These are the people that I talk to when I get down. The most important thing you can have is a good support system. If you are surrounded by people who don't understand, you are going to get depressed and fed up! I enjoy being alone. Some people tell me I need to get out and do this or do that. Being alone does not depress me. I enjoy my own company!!hahah I am not saying that I never get depressed, because I do. I miss my old life. There wasn't much that I couldn't do or try. I only get aggravated when I am with someone who is constantly complaining of trivial things. Your headache will go away! Of course, there are always those people that think until my hands are crippled up and I am in a wheelchair nothing is wrong with me. It is very frustrating for me, but Phillip always says, � They just don�t understand the disease, so they don�t have a clue.� I think this is one of the hardest things to deal with. I was always very active, working, gardening, housekeeping, house projects, canning, crocheting, etc and now there are alot of things I can�t do. I am learning to pace myself and to adjust. I must admit in some of my weaker moments, I have wished that some people could feel like I do for 1 day. Just one day......... Learn to say "NO". If someone gets upset, too bad, you have to take care for yourself. I have just recently started saying, "NO', without guilt! If they get mad, then they do not have your best interests at heart. There are people that have never been at our house more than and hour, but yet complain if we only stay at their house a couple hours. There is also a group of friends and family that have come each time I have had surgery, to bring food, cook here, do laundry, etc. I wish everyone could understand. And of course, there are going to be those people that knows someone with RA, that tell you "Well, he doesn't have any trouble". Yeah, well, my Grandpa fell over dead of a heart attack at 40 and my Dad had two heart attacks before he was 60 and he is still living. They both had heart attacks, but it didn't effect them the same!! Occasionally, I need a cane to walk. Have used a wheelchair a couple times. My husband and I were visiting someone and they called me a cripple. I was also accused of not being as sick as I say I am. Like I can control it!! They don't understand, nor do I feel they want to. Needless to say, I avoid that person as much as I can. Trust me, I am not thrilled that at 41 I have had RA for 4 years (2005). I am constantly sick, because RA weakens your immune system. I am so fortunate that I did not get RA 5 or more years ago. The treatments available today, were not available then. Look at it that we are lucky! Just imagine what researchers will come up with in the next 5 - 10 years. Rheumatoid Arthritis research really seems to be picking up and I can't wait to see what they come up with in the next few years. Granted the damage will already be done, but research has come along way. Just think, people use to take Gold injections for RA. I have also given up trying to explain the difference between OA and RA to people. I think it would be safe to say that anyone over the age of 40 has OA, but not everyone over the age of 40 has RA. OA is wear and tear on a joint. RA is an autoimmune disease. Whether or not you can still walk, the disease is still effecting your immune system. Unluckly for me, I have OA and RA. I also get migraines, have a bad back, and chronic pain in my neck and shoulders. YOU AND REST AND EXERCISE: Get plenty of sleep. Take a nap if you have to. There are times that I will lay down and read instead for maybe a half hour. It re-energizes me. Ask your Doctor what exercises are good for you. If you can afford it, join a fitness class that has water aerobics. I tried it for 4 months and it does help with your range of motion, but it just wasn't an expense we could afford. After I went to physical therapy, I continued it at home. I pick up marbles with my toes and put them in a jug, play with playdough, move a towel across the floor with my toes. A friend of mine bought me some Burt's Bee's lotions and I am constantly massaging my hands and feet. If I am real lucky, I can get Phillip to do it. YOU AND YOUR INSURANCE: Know what your insurance pays and what your need precerts for. It will save you time, if your Doctor changes your treatment. Example: find out if your insurance pays for Enbrel, Remicade etc before hand. That way if your Doctor wants to switch you to a different drug you don't waste time. Check to see if your insurance company offers a mail order for drugs. You can get your meds for 3 months at a greatly reduced price. Also if you are having a hard time buying your medicine because you don't have insurance, check out the Medicine Program. If you are on Medicare sign up for one of their drug cards. Don't be ashamed, Ask your Doctor if he has any samples. My family Doctor told me that some insurance companies will help pay for a sauna, steam room, or jacuzzi. I haven't checked this out yet, but it sure would be nice. Several insurance companies provide discounts for massage therapy, dieticians, and fitness clubs. I am sure by now, you have filled out a hundred forms for HIPAA. If you really must, you can check out the HIPAA website. Truthfully, in my opinion, HIPPA was a waste of my taxpaper dollars. My records were already mine and confidential. The government did not need to spend millions of dollars to tell me so. Rhematoid Arthritis is a very expensive disease to have. If you stay on top of things, you might be able to keep the costs down a little. Direct and indirect costs for RA are approx $5700 yearly and you wonder why I don't want to go shopping! ALTERNATIVE THERAPIES: I got a paraffin bath for Christmas and it feels great. I use it on my hands and feet. I also have heating pads, microwave gel packs, a foot bath and ice packs always handy. I made a rice hand mitt that I heat in the microwave. Also, I light candles in the bathroom, plug in my bath spa, grab a good book and soak in hot water. I am wishing we could afford a jacuzzi, but.......... I also have a drawer full of "cures" people have gave me. It was thoughtful, but...... Pray! You didn't get RA because of something you did. It is not a punishment from God. I worked in a hospital, nursing home and Home Health for 14 years. I had several patients with RA and they all were bedbound or in a wheelchair. I was always trying to come up with ideas to make them more comfortable. This has helped me now. I wish they were still alive so that I could tell them, I now understand how they could be to tired to get a bed bath. YOU AND YOUR RA MEDS: Each time I start a new med, I get excited. This will be the one that helps me!!! 6 months later, it is not working and I crash. Try to remember that your Doctor does not know which RA drug will work for you. Trial and error. Just because somebody else tried one and it worked for them, does not mean it will also work with you. If you get frustrated, don't direct it toward your Doctor. Also, if your family doctor or another doctor starts you on a new medication, let your Rheumatologist know immediately. You do not want to have any reactions with your other meds. Make sure you read your med bottles. Someone once told me someone was taking 14 mexotrexate a week. It was 2 a week not 2 a day! I was taking an antibiotic and I thought it was 2 a day and it was 1 a day! If your mind gets fuzzy, read the bottle everytime. Keep your meds in a pillbox weekly. Because my memory isn't what it use to be, I use an alarm on my cellphone to go off every Monday at 10am to remind me to take my Enbrel shot. Safety & Extras Install a handrail in the bathtub. Use a stool in the tub. Buy a reachy thing. Use an electric jar opener. Get a Flu shot! I stock up on kleenex, paper towels for the bathroom instead of a hand towel. Avoid people that are sick. Don't reuse your drinking water bottle. If you think you have the flu, see or call your Doctor right away. There are anti-viral meds available now. Two drugs treat Influenza A and two drugs treat Influenza B. They do not cure the flu, only shorten duration by about one day. Get a Pneumonia shot! It is recommended for anyone over 65 and people with compromised immune systems. Make sure you are tested for TB. FOR WOMEN: I went through immediate menapause when I had a complete hysterectomy when I was 36. I had been taking Premarin since my surgery. I was having really bad hot flashs, lost interest, fatigued so, because of the hot flashes and the fact that my CRP was only 2, saw my GYN. He told me with my RA, I had more things to worry about than hot flashes and loss of sex drive. Switched to a new GYN right away. I do not have 1 foot in the grave. The first thing she did was check my Estradiol level: it was 20 and is suppose to be 40. She put me on a hormone patch and it made a huge difference. You are not bound to ANY doctor. You did not take a vow to stay with them until you die. If a doctor is not listening to you, doesn't treat you right, or belittles you, there are many more to chose from. For whatever reason, RA seems to be worse in women. |
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| RHEUMATOID ARTHRITIS AND YOU |
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| Phil & me Christmas of 2006 @ Biltmore Estate, Asheville, NC |
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| My cousin, Herb & I parasailing over Tampa Bay. We went out in a "rubber boat" and had to jump to the big boat to be able to go up. That was the scary part. Jumping from one boat to the other. Feet don't fail me now!!! Once we were up, it was so quiet. I loved it!! Herb needed a drink. haha |