My baby!! He's my back-up man..LOL!
2009 Hudson River Swim for Life Finish Line after 2:17:01
Essentially, I have always had "athletic" tendencies, although it would be quite a stretch to call me an athlete. I have always attempted to keep myself fairly fit most of my life participating in activities such as training/showing performance horses, kickboxing, swimming and strength-training. Strength-training is my first love and I have been doing it since about 1997. I used to lift heavy, but in 2007, my body said no more, so I began the intricate journey of reshaping my body, from a high weight of about 220 and muscle mass, to now 165 and muscle definition. For me, the most difficult part has been psychological; convincing myself that just because I do not lift nearly as heavy anymore, that does not mean I am physically weak. I absolutely love, love, love being strong - I just think it's cool..LOL! In January of 2009, I jumped back into the pool (no racquetball with the new knees, darnitall) and began training for open water competitive swims. I had my first race in July, swam the 2009 Hudson River Swim for Life and spent my annual vacation in Bermuda for the 2009 Round-the-Sound swim. Dara Torres I am not, but it does give me something to work for so that I do not stagnate.
When I was two, I was diagnosed with Juvenile Rheumatoid Arthritis, an incurable autoimmune disease that causes your body to essentially turn on itself destroying cartilage, inflaming and deforming joints and generally causing a great deal of pain at times. I think that, in a sense, I was blessed with being diagnosed at a young age because I never knew life without it; thus, I never knew what I was missing. When I was 16, I remember a podiatrist telling me that I would be in a wheelchair by the time I was 35; and I decided that was most certainly NOT going to happen. After about 25 years of being in remission, the disease flared with a vengeance in January 2007. Let me tell you; being that I had not dealt with the disease as an adult, when it hit, I truly did not know what it was and was scared to death. All I knew is that every joint, with the exception of hips and spine, was emitting terrible pain and stiffness. For the first quarter of 2007, it was so bad that most days, I had to fight to get out of bed and get through the workday. I knew I couldn’t give up; what income would I have? I remember, one night, after working out, I sat in my truck in tears because my hands hurt so badly from grasping the dumbbells. I wondered how bad I was going to get before I had to throw in the towel. The rheumy that I had at the time didn’t do a damn thing except throw opiates at me for about three months, so I had to find another doctor. I was re-diagnosed with Sero-negative RA, with underlying OA, in April of 2007. One of the drugs that I was place on, Enbrel, worked like a charm until it gave me a case of drug-induced lupus (which disappeared with discontinuing the drug) and, obviously, I had to stop the drug. In January of 2008, I had a bi-lateral total knee replacement, I had my left foot reconstructed in October of 2008. In April, 2009, an MRI of my back showed that I have osteoarthritis in my lumbar spine, which is not a big deal because I don't feel that much discomfort in my back. On May 5, 2009, I had my first neck injection because my neck is terribly painful on a daily basis; but that did not help. Then, my pain management doc deadened the nerve endings, essentially, in my neck but that hasn't helped a great deal, either. I receive infusions once a month at home, along with a daily oral anti-inflam, and I am in decent shape, give or take a day here and there. I am determined to kick this disease's ass back into remission.
During this journey, I have found that a great deal of people with chronic diseases simply give up - leaving work and existing on disability, working part-time, obtaining handicapped parking tags immediately after being diagnosed, etc. I can't understand that methodology; it's no way to live and it damn sure isn't going to help. You will feel some pain, one way or the other. I am convinced that the only way to live with this disease is to go toe-to-toe with it on a daily basis. I have also found out that there is a great deal of ignorance regarding RA and some people can really treat you in a hurtful, vicious manner because they simply do not understand.
I did join a support group for people with RA, but it wasn't for me. The majority of the group didn't want to hear reality and certainly didn't want to explore the option of helping themselves with eating right and exercising. The "support" group actually depressed me (can you believe that - a depressing support group!!) so I left. I volunteer with Volunteer Outreach to prepare food for the less fortunate, which is hugely fulfilling for me. It makes me thankful for the life that I have, which is a damn good one.
In 2009, I had my Aha! moment, or an epiphany, about what I want to do with the next chapter of my life. I want to help spread awareness of this disease as well as motivate people who have it. I successfully sat for the ACE Certified Personal Trainer exam - and PASSED on 11.14.09 - woohoo, baby! I work a second job on a per diem basis as a trainer at a well-known rehabilitation facility. Also I am working on building a motivational speaking business as well as authoring a book on my experience with living with a chronic condition. I don't know how far I can take this but I have to try.
It is so refreshing to meet people who are in the same struggle, who understand and can empathize. I wish y’all all the luck in the world and encourage everyone to stick with it until the day they leave this Earth. Remember, don’t let anyone take away who you are – you only get one ride on the merry-go-round of life. Do it your way!!
I was extremely ill in the fall of 2011 with a severe case of drug-induce lupus. Hence, I placed on Prednisone and gained a whopping 30lbs. in three months. I am fighting like hell to take it off.
I eat a dairy and meat-free diet. I strength-train four-six mornings per week (depending on my goals) and "wog" (jog-walk) 4 miles 1 times per week and do the elliptical for 45 minutes 4-5 times per week.
Certified Personal Trainer
Author - book in progress
President of MzFit Fitness, Inc. - website to be launched in May, 2012. I am a certified personal trainer who has had a chronic condition my entire life. I will be offering in-home personal training to clients with chronic conditions. I also will be offering motivational speaking services and column writing on the importance of fitness when someone has a chronic condition. I will speak on how to face life when you are faced with a great deal of adversity.
Secrets of Success
This user doesn't have any secrets of success.
THINKING OF YOU,,,and hope you are doing better? Anxious to try those noodels. How do you eat them? Plain, anything with it? Can't wait to go to Whole Foods, hugs, Wanda
2382 days ago
Hey, I've only just come across your post about Domperidone (having lost the month of Jan to yet another hospitalization with my routine low white count, anemia, and this time severe nutritional deficits -got to have yummy IV food. Blecchh...I gained TEN pounds & never ate a bite a dirty gyp!) ANYWHO - I went to respiratory school w/a girl who had gastroparesis & she gets her domperidone from Canada w/a script from her GI doc. Obviously this is done under the table so to speak, but she has had excellent success with the medication & no side effects.
She has hypertension & STILL doesn't have any problems w/the medication. Seems to me w/all the really dangerous stuff the FDA puts out on the market they'd have approved this one. Guess the drug company that makes it didn't have deep enough pockets to gt it approved.
I'm curious to know what you decided on & how it's working for you.
2390 days ago
Wow! I so agree with you about the RA support groups. LOL I thought I was the only one who felt that way, I'm glad I'm not.
great to meet you!
2395 days ago
Hope you have a great week!
2405 days ago
Great to meet you. What protein drink are you all talking about? I need help in that area, especailly now since I'm in the middle of a move.
2412 days ago