Wayney

Wayney

RA Guy Real Profiles of RA 1 Comment

Real Profiles of Rheumatoid Arthritis
Photos © Wayney

Name?

Wayney

Age?

34

Location?

Myrtle Beach, South Carolina, United States

How long have you lived with RA?

27 yrs for JRA, osteoporosis 25 yrs, OA, FMS 10 yrs, facet joint arthritis, peripheral neuropathy 5 yrs.

What advice would you give to someone who has just been diagnosed with RA?

Learn all you can because “Knowledge is Power!” I definitely believe this is one of the best ways to not only survive having Ra or a related condition, but to thrive. But, using reputable sources is the key to having knowledge. I was diagnosed at the age of 7 with JRA and my mother made the doctors include me in everything since it was my body and I had to live with the disease. My doctor was great. I was seen at a children’s hospital and was one of their cases that students were brought in to see. All too many times if the students couldn’t answer the doctor’s question, he’d turn to me and I’d answer it. That shocked some students. But, it was things I needed to learn about my body. About 10 yrs ago during a PT evaluation I shocked the PT. He asked if I had trouble lifting a gallon of milk or a lg bottle of laundry detergent etc. I said no, because I knew better than to stress my joints in that way. I either bought smaller sizes OR my husband split large containers into smaller ones. He asked about carrying heavy items, and I laughed. I said if I could help it, I didn’t carry heavy items. I’d slide them along the floor whenever possible. If that wasn’t possible, I could carry the items fairly easily…it was later that I paid the price. I could do many things before that I knew were not best for me to do. I learned that at an early age during PT/OT and from my pediatric rheumy how to live a great life in spite of RA.

Do you use any mobility aids?

Wheelchair, walker, forearm crutches, bilateral ankle foot orthosis (AFO) with brace and elevated heel to compensate for ankle contractures, grabber, shower chair. Without the AFOs, I can’t stand at all. I use my forearm crutches most of the time because they’re more convenient and easier to use getting in and out of vehicles. The trade off is that there is less support and stability with the forearm crutches. At times, I need more support and stability so I will switch to a walker. And if there is a lot of walking to do, I’ll use my wheelchair to keep my energy level up so I can enjoy the activity more. I have had stares and looks but since I’ve been using these items, NO ONE has given me any kind of problem about my use of a handicapped parking spot! Before, if I parked in a handicapped spot or if my husband did so for me and I was walking without any assistive devices, I’d get a lot of stares and some rude comments. Some guy once told me he was a police officer from a large city and it was people like me that he ticketed. He gave me such a hassle. His wife even bumped my husband with their vehicle so they could drive off after the man shoved my husband. Sadly, our local police couldn’t do much since we didn’t get their license number. So, it’s almost good to have something visible to keep the comments at bay!

How has living with RA helped to improve your life?

I’m more compassionate. I am also more knowledgeable about health issues. At times my family and friends come to me for information because they know I have the resources to help them. I’ve learned the value of being a human being not a human doing.

Do you have any visible signs of RA?

My hands are visibly affected. Two fingers on my left hand curl toward the palm and I have less mobility in them. I have swan necking and hyperextension in almost all of the other fingers. My gait is very visibly affected. I walk very stiff-legged and slowly. In fact, it’s almost a waddle when I use my crutches! If I am not wearing my AFOs, my feet are very visibly affected. My toes are permanently bent. I can either put the toes of my right foot on the floor, or my heel on the floor but I cannot do both. In fact, because of how my toes are all curled under, when I put my toes on the floor, the tips of them touch the floor rather than the bottom of them. I have horrible posture due to back pain.

Can you please describe some of your favorite coping strategies for living with RA?

I read, check in with an online support group, talk to my Mom (who has polymyositis, RA, and OA) talk to my best friend of 24 yrs, who also has RA and scleroderma. (Sadly, I practically dx’d her RA!) I used to do a lot of reading of info on RA but being in a nursing home w/o Internet access for 2 yrs after spending almost a year in 3 separate hospitals has me behind on doing that and I just haven’t gotten back into it in the 3 weeks I’ve been home. I journal. Distraction is a great help. I watch funny movies. Spending time with people who understand is a huge help. My family and friends have low expectations for me when it comes to doing anything that is physically tiring. My faith also helps.

Can you please describe your current medical (traditional and alternative) treatments?

I’m on: Arava (RA), Calcium(osteoporosis), Folic Acid(prevent hair loss with Arava), Methadone(pain), Mucinex(chronic sinus problems), Neurontin(nerve pain), Prednisone(inflammation), Provigil(chronic sleepiness as well as sedation from medications), Robaxin(muscle spasms), Salagen(Sjogren’s Syndrome), VesiCare(bladder problems), and a Vitamin (which is less meds than I was on 4 yrs ago!)

Is there anything else about yourself that you would like to share?

I know I would not have gotten through the last 3 yrs without my faith. The doctors and nurses were afraid I was not going to make it. I was in a state they can’t explain. I spoke to people, appropriately answering things, but they could tell I wasn’t conscious of what I was doing and saying. I remember very little of that period. To me it was as if I was asleep the whole time. A few times I was having odd dreams that I thought were real. They told me I might never walk. And that it would take 2-3 YEARS of daily intensive therapy to stand. I had a delay of 14 months before beginning therapy once I got to the nursing home. But, once I began PT on Jan. 5th, 2011, (for an hour a day three days/week), I was able to stand on March 29th, 2011. I took my first steps on Apr. 18th, 2011. I can definitely say that while it was not easy, it also was not intensive. I know that at my sickest, people around the world were praying for me. And two people sent prayers to the Wailing Wall in Jerusalem. I fully think I made it because of the prayers of all of those people. It wasn’t long after the prayers were sent to Jerusalem that I really began to improve. I believe that prayer is what kept me alive and got me to the point of walking. I feel God has a reason why I’ve been through all of this.

Wayney blogs at: http://wayneyp.blogspot.com/.

Lindsey Thies

Lindsey Thies

RA Guy Real Profiles of RA 1 Comment

Real Profiles of Rheumatoid Arthritis
Photos © Lindsey Thies

Name?

Lindsey Thies

Age?

29

Location?

Norwalk, Connecticut, United States

How long have you lived with RA?

I was diagnosed after 10 years of symptoms at the age of 20. So 19 years total.

What advice would you give to someone who has just been diagnosed with RA?

Be your own advocate and learn all you can. Also don’t let the doctors bully you, you are their boss!

Do you use any mobility aids?

None at this point.

How has living with RA helped to improve your life?

My disease has given me compassion, and that fighting spirit to make my dreams come true no matter what.

Do you have any visible signs of RA?

My hands and feet are a disaster, plus the visible signs of taking prednisone for too long.

Can you please describe some of your favorite coping strategies for living with RA?

Two years after diagnoses I got a puppy and she brought me out of my funk. Also Facebook support groups really helped me. Also don’t be to proud to seek professional help when you need it, when I started college I had a hard time coping with all the new responsibilities and RA.

Can you please describe your current medical (traditional and alternative) treatments?

Well I have been trying to get pregnant for 2 years now, so I can only take prednisone and plaquenil. I really have to work on reducing my stress which always benefits my RA.

Is there anything else about yourself that you would like to share?

My dream was to get my college education and have a great job. I started college 4 years after being diagnosed with RA. I am currently about to graduate and have a job working as a product developer for Pepperidge farms. Also while in college I studied abroad in Guangzhou, China for 6 months, by myself!! The point is I thought my life was over when I got my diagnoses and it turns out it had just begun!!

Cassie

Cassie Lane

RA Guy Real Profiles of RA 5 Comments

Real Profiles of Rheumatoid Arthritis
Photos © Cassie Lane

Name?

Cassie Lane

Age?

26

Location?

Coventry, Connecticut, United States

How long have you lived with RA?

I was diagnosed quite recently, but I can only guess as I have had many symptoms for the past 4-5 months.

What advice would you give to someone who has just been diagnosed with RA?

Try your best to stay positive and find some humor in it. Life’s too short to look at what you don’t have, or what you are unable to do. If you have kids, watch them grow and learn. If you feel you are “too young” to have RA, find a positive perspective, think of all the people you can help just by listening and being supportive. If you are spiritual, pray or meditate.

Do you use any mobility aids?

Braces.

How has living with RA helped to improve your life?

It has actually made me very grateful. For my children, my husband especially, I was afraid with something like this he would become frustrated and leave. But he’s had my back 100%!! And the kids are great help too!!

Do you have any visible signs of RA?

I walk very stiff and sort of limp a lot. I have incredible difficulty bending either of my legs just to sit down, getting up is even worse lol. Also, packages…they suck, cannot open them very well.

Can you please describe some of your favorite coping strategies for living with RA?

Looking at what I still have rather than what I do not. A lot of self talk/reassurance. Writing seems to help as well! Helping others whether it’s RA related or not, there’s always somebody who is worse off than you.

Can you please describe your current medical (traditional and alternative) treatments?

I have not seen a rheumatologist yet, the only thing I am taking is Motrin 600 to curb the pain. I also do a lot of yoga to help stretch and release tension. Much meditation to relax my mind and nerves.

Is there anything else about yourself that you would like to share?

I was also diagnosed with MS in early 2010, so upon hearing that I could have TWO autoimmune disorders really threw me for a loop. It’s been a ride but I am determined to stay strong and live a healthy, active life.

Lori Elkins

Lori Elkins

RA Guy Real Profiles of RA 3 Comments

Real Profiles of Rheumatoid Arthritis
Photos © Lori Elkins

Name?

Lori Elkins

Age?

39

Location?

Gahanna, Ohio, United States

How long have you lived with RA?

It came on in Feb. 2011. I was diagnosed Aug 2011.

What advice would you give to someone who has just been diagnosed with RA?

Educate yourself, ask questions, be pro-active. Keep fighting, don’t give up or give in! Remember that God has a plan for your life and RA is part of that plan. Know that there is a bigger picture that we can’t see.

Do you use any mobility aids?

Currently I use wrist and ankle splints. The ankle support helps the pain. The wrist splints limit my mobility which causes less pain. On a lighter note, my kids are mobility aids too…they help do things, get things, move things, and best of all, love on their mommy (which gives me inner strength)!

How has living with RA helped to improve your life?

Living with RA has made me more aware and sympathetic to others. I was already a compassionate person, but RA brings out a whole new level of caring and concern. It also puts life into perspective a bit more. Yes, RA isn’t great, but it’s not terminal. I’m grateful for all my blessings!

Do you have any visible signs of RA?

The only visible signs I have would be my wrist and ankle splints. Other than that, my friends and family can tell by my face if it’s a bad day.

Can you please describe some of your favorite coping strategies for living with RA?

Prayer is the best coping strategy! Second to that is being able to talk to/vent to someone who understands or just someone who loves me (like Mom!)

Can you please describe your current medical (traditional and alternative) treatments?

Currently I am taking Prednisone and Hydroxychloroquine (Plaquenil). I also have upped my intake of vitamin D significantly and started working with a physical trainer at my gym who is certified for working with arthritis patients.

Is there anything else about yourself that you would like to share?

I am a single Christian mom of two wonderful kids; my son is 9.5 and my daughter is nearly 8 and we all have ADHD (woohoo!). I work full-time, go to school full-time, and am active in our church. We love the Lord and are grateful daily for all our blessings.

Tracy Pierce

Tracy Pierce

RA Guy Real Profiles of RA 6 Comments

Real Profiles of Rheumatoid Arthritis
Photos © Tracy Pierce

Name?

Tracy Pierce

Age?

33

Location?

Elizabethton, Tennessee, United States

How long have you lived with RA?

10+ years.

What advice would you give to someone who has just been diagnosed with RA?

Educate yourself about RA. Work with your doctor to see what is best for you. No one persons treatment and results will be the same so if your meds are not working then you need to let your doctor know. If you have a doctor that doesn’t want to help or change your meds or work with you then find another doctor asap. I made this mistake by sticking with the same rheumatologist even when my treatment was not working at all and was in the worst pain of my life. I was simply shrugged off as overreacting but as soon as I switched RA drs…I got relief because he changed my meds and really listed to me when I told him what hurt and the pain level was simply out of control. Also, I would advise a good support group either in your area or online. A good support system is essential with RA.

Do you use any mobility aids?

Not at the moment. I do own a quad cane, a raised toilet seat, braces/splints for wrists, hands and knees and alot of different heat raps. One heat rap for the neck, small ones, medium sized ones and electric blanket. I also have to wear a mouth guard at night when I sleep because the RA also effects my jaws and without it my jaws KILL me!

How has living with RA helped to improve your life?

I have always considered myself as a nice quiet person that is very compassionate but RA has taken my compassion to another level. It has taught me to not judge a book by its cover that you don’t have to “LOOK SICK” to be sick and in pain. It has definatly made me a much stronger person. My husband tells me I am the strongest person he has ever met. (Although I don’t feel that way most of the time) I just know at the end of the day I can’t give up…I just can’t! It is not an option. My children and husband need me too much to give up and if I give up my disease wins and I lose.

Do you have any visible signs of RA?

I have a ton of rheumatoid nodules on both elbows and at times it makes me self conscious. My big toe on each foot is turned in. Visible swollen fingers. Very restricted jaws (can’t open mouth very much at all and can make it hard and painful to eat.)

Can you please describe some of your favorite coping strategies for living with RA?

I am very thankful I have a good support system and my husband is my rock and without him I don’t know what I would do. If I am hurting alot then rest is my friend. I use heat wraps and packs alot and electric blankets. Heat feels so good on aching joints and muscles. Thankfully my husband steps in and takes care of household things and the running so I don’t have to push myself to do it when I am hurting. Honestly if I am hurting alot a good cry always helps me. Keeping it bottled up only makes it worse for me I do try to be strong and not complain it does help when it gets to be all too much to talk about it to someone.

Can you please describe your current medical (traditional and alternative) treatments?

I have been on Arava, Methotrexate (pill form and shot), Prednisone, Enbrel, Immuran and Percocets and a TON of Ibuprofen. I am in the process of getting started back with a RA doctor and as of right now I am not on anything but Ibuprofen and percocets till I go back next week to the RA doctor.

Is there anything else about yourself that you would like to share?

I have a passion for raising awareness for Rheumatoid Arthritis. It is so missunderstood. Even my family doesn’t really have a clue what it is like and to the degree of pain that one suffers with RA. I have an Ebay store were I sell edible cake toppers/images (cake not included, cake topper only) which is named Cakes 4 Cause to try and raise awareness for Rheumatoid Arthritis. Each order comes with a website link with tips and tricks for your applying your edible cake topper along with alot of RA information and my story and such. One day I really want to write a book on my journey with RA.