erin

Erin

RA Guy Real Profiles of RA Leave a Comment

real-profile-erin

Photos © Erin

Name?

Erin

Age?

39

Location?

Saskatoon, Saskatchewan, Canada

How long have you lived with RA?

I was diagnosed with RA in my 20s, but previous to that I’d had a lifetime of joint problems. I was initially diagnosed at age 5 with scoliosis and hip dysplasia, then mild spina bifida. At age 14, I was diagnosed with Ankylosing Spondylitis; I have since added a diagnosis of RA and chronic soft tissue pain.

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

Learn everything you can about RA – but take what fits for you and leave the rest. Connect with others who are living with RA, especially people with whom you have other things in common (like your age, interests, etc.). The interweb is amazing for that!

Do you use any mobility aids?

I’ve used a cane periodically, but since my arthritis impacts both hips, both knees, my back, and my arms, it can be tough to use a cane or crutches. I had one flare up in my 20s that resulted in my using a wheelchair, and now occasionally (and a LOT begrudgingly – I still struggle with this) use a chair for special events. We’ve also recently moved to from a 2-story house a bungalow, and have added an accessible en suite bathroom to that house, which has helped maintain what mobility I still have. Getting an accessible parking placard has also been a huge help – although with a mostly invisible disability, I do occasionally get nasty looks and comments about using accessible parking spots. I’ve gradually learned to prioritize my health and comfort over what other people think… I’m trying to, anyway 😉

How has living with RA helped to improve your life?

I’ve learned that it’s okay to need help, and to ask for it. I’ve also become a fair bit more gentle with myself – I have pretty strong perfectionist tendencies, so giving myself (or my work, or my house) permission to be imperfect has been HUGE for me. I’m also reaching a point where all the “stuff” in my house is taking too much time and energy to maintain and manage, so I’m flirting with paring WAY down and really looking at what I actually need in terms of material possessions and living space. Big house = lots of upkeep = lots of room for stuff to accumulate. When you’ve got a chronic illness, you are ultimately forced to look at life differently and really consider what you want to put your energy into.

Do you have any visible signs of RA?

Unless I’m using a cane or am in a wheelchair, I actually don’t. I am “but you don’t look sick” personified! Sometimes I have to walk really slowly and/or have a limp, but that’s about it. I do have several surgery scars, but they’re all small as I’ve been fortunate enough to only have laparoscopic procedures so far.

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

I’m a social worker/counsellor, so I try to treat myself the way I do the people I support in my work. If I wouldn’t say or think something about a client and the way they’re handling their situation, why should I think that way about myself? Leaning into (rather than isolating myself from) my partner – that’s been a tough thing to work through, as my tendency is to suffer in silence. And yoga – I’ve recently discovered an aqua yoga class, and it is phenomenal for my emotional, physical, and spiritual wellbeing. I actually switched jobs and took a pay cut so I could work in the same building as my gym and pool. I also have a psychologist whose practice focuses on people with chronic illnesses – she’s an employee of our local health region, so I can see her on a regular/extended basis and it doesn’t cost me anything. Spending time with my dog is a great way of dealing with emotional stress, too – she’s a great support and seems to know when I’m struggling. Now if we could only get her trained to not “tromp” on me when I’m hurting…

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

I’ve mowed through almost all of the NSAIDs, DMARDs and related meds, and have the stomach issues to show it. In recent years, it’s been all about the biologics – I’m currently on Humira, along with occasional cortisone injections into multiple joints, for my RA. A few years back, Remicade put me in remission but my veins were shot so we had to switch to an injectable rather than an IV infusion. I’m so fortunate that my partner is willing and able to do my injections for me as I have a pretty wicked needle phobia. I’ve also tried methotrexate (I reacted really badly to it – nausea, hair loss, the whole nine yards, even as an injection – so I avoid it now. For the past 4 1/2 years, I have been on opioids (T3s, T4s, oxycodone, and most recently hydromorphone) for my chronic pain but recently had to completely discontinue them as I was having chronic migraines and it was determined that the pain meds were partially to blame (not to mention the brutal side effects and reduction of quality of life associated with long term opiate use). Now I’m on medical marijuana for pain, and it seems to be working with minimal side effects.

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

I like books (a lot), adore my nieces and nephews, love to travel and explore, and am very proud of the vintage camper we restored (even if we aren’t able to camp as much as we used to – damn uncomfortable camper bed!). I’m someone who loves to take the lead in almost anything, and loves being in control. I’ve fought against “accepting” my health conditions, and all that came with them, for many years. When I was younger, I was able to manage over doing things and could recover relatively quickly. As I’ve aged and my symptoms have become more severe, pacing myself has been very important and I’m still figuring out how much is too much, what activities are worth pushing myself for, how to stay connected to people, communities, and issues I’m passionate about, and how to rest and let others take care of things. I still struggle as I grieve the things I used to do but can’t anymore, things I had hoped to do someday, the kind of life I wanted, the kind of work I’d hoped to do, the house I loved but had to sell because I could no longer get around in it, and many, many other “little” things. Coming to terms with living with a chronic illness is a process, and every day I find I’m facing a new piece of that. But it can get better – it can even be really great at times!

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Shirley

RA Guy Real Profiles of RA 2 Comments

Real-Profile-Shirley

Photos © Shirley

Name?

Shirley

Age?

34

Location?

Noosa, Australia

How long have you lived with RA?

It was officially diagnosed by a Rheumatologist a few months ago but I have been seeing doctors because of it for three years, and had symptoms before that.

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

Umm, that’s me. The most helpful thing has been seeing a Chronic Illnesses Psychologist. She helped me put together strategies to accept this diagnosis. And not googling the condition and people’s negative stories too much. Also, I didn’t want to start on RA meds, but since taking them I’m now able to function in daily life again.

Do you use any mobility aids?

No. Well other than a wrist support, but that’s not really mobility aid.

How has living with RA helped to improve your life?

I’ve stepped out of the fast lane and am learning to appreciate the small things again. Having the time to just do nothing, read a book, hang out with my dogs, all on a regular basis, and knowing it’s actually being responsible, is nice. I work for myself as a photographer, and it has given me a deeper insight into how lovely photos for special memories can be. I’m also just starting to say ‘no’ to people, when it doesn’t suit me (something I’ve not always been very good at).

Do you have any visible signs of RA?

I don’t. During a flare, my fingers on my right hand don’t straighten and I might limp a little, but nothing permanent.

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

RA is an uninvited guest in my car (the metaphorical journey through life), and it’s okay for it to be journeying with me, making me take detours, going at slow speeds etc, but I am always driving this car…I am ultimately in charge and I call the shots, not RA. There is room for fear and grief and acceptance, but I’m still the boss of this situation. I’m originally from Zimbabwe, and have lived in five different countries. My parents live in the UK, and my brother is in South Africa, and I don’t have many relatives or my long-time friends living nearby. My husband has been very supportive, and I go out of my way to gently educate him on this condition, and show him my gratitude. My new friends, and my medical team…I think I’ve picked them well, they’re a constant cheer of support and are really lovely people. Plus my dogs, they’re just slobberly unconditional love, and very good personal trainers with long walks and beach time. Also a few days after diagnosis, I made a basic bucket list of things I want to do whilst I can still physically enjoy them. One of them was to road-trip around Australia for a while…and this week I bought an old caravan for my hubby and I to renovate and then hit the road with our dogs. Life isn’t that serious…health, money, status, etc, it can appear and disappear so fast…focus on making your dreams a reality. I love writing, so I blog about having RA – http://www.swirlinnoosa.rocks/.

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

Plaquenil, prednisone, meloxicam, curcumin, multi-vitamins. I have a loosely ayurvedic (gluten and sugar free) meal plan that I stick to, most of the time, though inorder to be sociable sometimes I’m naughty. Diet definitely plays a big role…confirmed the day after my cheat days :/ I try to walk a few kilometres or swim on days that’s it’s physically possible. Plus I’ve started doing daily meditations, and am now studying to be an accredited energy healer.

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

Remember who you were…try not to be a victim by letting RA become your whole life. And try not to let media feel like you’re failing when it portrays that a healthy diet or positive mindset can heal everything. e’re human, and disease is a natural thing… some people are given higher mountains to climb, and if done so with a good attitude, the view will just get better and better. There’s a creative challenge in every tough situation. Always try find the ‘light’.

Nicole

Nicole

RA Guy Real Profiles of RA 4 Comments

Real-Profile-Nicole

Photos © Nicole

Name?

Nicole

Age?

31

Location?

Toronto, Canada

How long have you lived with RA?

I was diagnosed at 29, but like many people I think I had symptoms that I didn’t recognize to be RA signs from my early 20s. When I was younger I used to wake up feeling like I was walking on burning glass. Turns out, that wasn’t normal!

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

I have a lot of suggestions, and it’s not because I think I know everything it’s because I really wish that I would have found this blog when I was first diagnosed to learn from all of the others… so I’m just doing my part. Here are a few things that I can think of:

A good attitude will help with pain and emotional stress… BUT allow yourself to grieve too, because pretending like it’s not real is not good for anyone. I still have some ugly cries once in a while, and right after, I re-group and continue to drive on.

Educate yourself. Learn about everything you possibly can, you must be your own advocate.

Communicate: A lot of people don’t understand what you are going through. Figuring out the right way to share what RA is all about without throwing a pity party of downplaying its seriousness will help others try to understand. This will remove some isolation (sorry, this is common) that you may experience living with this disease. You’ll find that friends and family who understand make a world of difference! The ones that don’t might not be the friends you think they were…

Be forgiving: It’s ok to say no, and you really should rest when you’re tired. Things will be different, but different will not feel bad after time. It’s likely hard for you to understand that now, but you will…

Focus on the day. You can’t get caught up on how you felt yesterday or what tomorrow will be like. RA is such an unpredictable little monster. I used to put too much energy thinking I was finding trends in my health, but that used to just let me down when I was wrong.

Don’t let it change who you are. It doesn’t have to.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

I am really intentional with my time. This helps me focus on what matters most to me, because I don’t have unlimited energy. I also never know what the RA monster will deliver for me tomorrow, so time is just so valuable. It’s funny though, my intentionality might simply be choosing to do yoga, take the time to curl my hair (what a treat), and going for coffee with my husband. That could be it for the day… but if I prepare myself for that mentally… then I’m alright.

I don’t take anything for granted, and simple wins make me really happy. A nice walk on a summer day feels different that it did before.

I also have a lot of patience for others, even more than before, as similar to an invisible illness like RA… you just never know what someone else is going through.

Most importantly, I have learned who the most important people in my life are. They are the ones that want to understand, who haven’t given up on me, even after a million last minute cancelations… I’m so lucky to be loved the way I am.

Do you have any visible signs of RA?

Most people say they’d never know which is meant with wonderful intent. Sometimes I’m stiff, sometimes I can’t get up at all, and sometimes the fatigue across my face is so obvious it’s funny. I have actually had to take a nap under a desk at my office before.

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

Bikram Yoga has been a game changer. It’s a time dedicated where I know I’m positively contributing to disease. When I’m doing Bikram, I seem to forget everything else, and there is something so incredibly relieving about that. I leave the class feeling so balanced and normal. It’s like a little mental vacation.

I talk to my husband and friends. I’m lucky to have people who listen to me. It helps, a lot. I could probably talk more about it.

I really wish I knew someone in Toronto going through the same thing.

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

I take Methotrexate weekly injections which is better than the tablets (for me). I’m on Plaquenil which gives me terrible side effects, but I’m being put on Enbrel so hoping I can come off that one. I take Voltaren, Tecta and Folic Acid as well. I have found that the anti-inflammatory diet has been amazing for me. I am actually nervous to think about what things would be like if I wasn’t on this diet. Worth a shot if you are open to trying new things!

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

I suppose there is a lot to know about me! I am into writing and playing music, yoga, reading, walking my dogs, finding good coffee (sort of my bad exception to the anti-inflam diet), and LOVE the days when I get to pretend that I don’t have RA. It’s happened a couple times and it’s awesome. I am still learning, and it’s a struggle. I would love to find others close by (toronto) to connect with. Here’s my Facebook if you want to connect: https://www.facebook.com/nicole.mcphail.1

Shana

Shana

RA Guy Real Profiles of RA Leave a Comment

Photos © Shana

Name?

Shana

Age?

45

Location?

Outside Butte, Montana, United States

How long have you lived with RA?

Almost two years diagnosed.

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

Educate yourself about the disease. Traditional treatments, homeopathic medicine, self care, everything regarding this disease so you become a better advocate for yourself.

Do you use any mobility aids?

Yes, my husband. No, seriously! He helps me when I am having difficulty walking, opening a jar, cooking, showering, dressing…you name it.

How has living with RA helped to improve your life?

My first reaction was NOT AT ALL, but after some thought on the matter, I realize it has forced me to slow down and enjoy the things which actually matter in our life. Togetherness, a warm home, family, a fire on a cold day, my baby girls, my wonderful husband, and that first drink of coffee in the morning (no, really lol!).

Do you have any visible signs of RA?

Swelling in the fingers. I can’t make a fist some days. Feet and toe swelling. A limp at times.

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

A funny movie, quiet times, a good book, a walk when I’m able, a warm bath or shower, cuddles with my girls, and of course I sometimes cry.

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

I take Enbrel injections weekly. Prednisone 5mg a couple times a week. Multi vitamin, vit D, Iron, Cinnamon, Raw Honey, Turmeric Root, Medical Marijuana (CBD edibles). I started with prednisone, methotrexate, then added Humira. Humira was stopped and Enbrel started. Then methotrexate stopped and Arava started. Arava stopped. I feel like a guinea pig sometimes!!

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

I used to work as a Registered Nurse in various Emergency Departments (I was a traveler) doing Pediatric/Adult Traumas and Codes. I am the caregiver of our 6 1/2 year old daughter who has TRAPS, a Genetic Auto Inflammatory disease. Her health and well-being are number one, before my own, but I do recognize that I will not be able to care for her unless I take care of myself. It is a struggle. Before I got this disease, I was very active in the outdoors, hiking, hunting (archery and rifle), fishing (fly and spin). Trying to get back to it. I have a blog at irishdoe.simplesite.com.

Lorelei

Lorelei Nettles

RA Guy Real Profiles of RA Leave a Comment

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Photos © Lorelei Nettles

Name?

Lorelei Nettles

Age?

55

Location?

Mesa, Arizona, United States

How long have you lived with RA?

I was just diagnosed March 2015, but once diagnosed realized it had been longer (maybe up to a year or more before). I started the process by becoming almost completely incapacitated. I couldn’t roll over in bed, I could barely walk or lift my arms, etc. I have it in every joint except my hips. Once diagnosed, I realized my numerous previous exercise injuries were due to the disease.

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

Research! I am still working on that, but have learned so much already. The more you know, the better you can address the needs you have.

Do you use any mobility aids?

I do use wrist wraps and a knee brace as needed. I have been considering a toilet riser and cane for when I flare real bad.

How has living with RA helped to improve your life?

I think I am more compassionate of other people’s pain. It has also made me focus more on diet and creating a better lifestyle.

Do you have any visible signs of RA?

I have some nodules on toes and have been losing flexibility in my wrists.

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

I have fought depression. It can be frustrating to lose control of your body, but I have looked at those who are much worse off than myself and how happy they are with their situation and realized I can cope with what I have. I also have developed a “never give up” attitude. Most of all, I rely on God. I pray and know He won’t give me more than I can handle.

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

I am currently on 8 Methotrexate a week and just ending ,my second round of a 30 day 5mg Prednisone regiment. They want me to take Humira, but the side affects terrify me. I also get a lot of pressure not to take the drugs from friends and family. The RA has greatly affected my current knee issue with osteo arthritis, so I will have to get the knee replaced. After that I will probably relent and take the Humira as I have trouble dealing with the wrist and shoulder pain most of all. I also take 800mg of Ibuprofen as needed for pain, although I try to limit it. I have cut down on red meat and my diet leans heavier on veggies, rice and fruits.

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

I am a writer. That means I not only type, but love to take notes at church and write things as I think of them. I have realized hand writing has become a big problem. An hour of writing (or less) can cause me to have a week without the use of my hand. As you can imagine, that is a great problem for the dominant hand. I retain a positive attitude though and try to laugh most of it off and do what I can to be a happy family member and friend.