Lyda-Clark

Lyda Clark

Real Profiles of Rheumatoid Arthritis
Photos © Lyda Clark

Name?

Lyda Clark

Age?

24

Location?

Kailua, Hawaii, United States

How long have you lived with RA?

12 years – yeesh! Diagnosed when I was 12 years old.

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

Don’t get discouraged. It is possible to live a normal, happy life with RA. Take extra time to understand your body, your mind, and your strengths and weaknesses. In order to keep afloat you have to be very in tune with your needs. Also you must learn to be your own advocate. When it comes to treatment, doctors, and just dealing with people on a day-to-day basis, you need to know how to stick up for yourself and be honest with yourself about your needs.

And do your best to keep positive. There are a lot of things that have the ability to bring you down – pain, low energy, difficult people – as long as you can keep a positive outlook on your life you can overcome those things. I know it sounds easier said than done, but it’s important to keep your head held high. Learn to laugh and you’ll be fine.

Do you use any mobility aids?

Luckily, on a daily basis, no. Though on my worst days, when there is extreme swelling, I wish things were easier. The only thing I change on a regular basis is my prescription bottles from the child protective caps. Ha!

How has living with RA helped to improve your life?

I have become much more self-aware than I think I would would be had I not been diagnosed with RA. At times I’m sad that I lost a big part of my adolescence from being diagnosed because I had to grow up quickly. I had to learn to take care of myself at a very young age and I always felt different from my peers. But in a way I wouldn’t change a thing because it has made me into the person I am today. I’m honest with myself, I’m tougher, able to communicate better with others, and I’ve connected with a number of people that I never would have met if I wasn’t involved in the arthritis community. Life can be difficult but I’ve learned to see the positive more often than not.

Do you have any visible signs of RA?

Not that I know of! I do my best to keep my RA to myself, though my husband always seems to know when it’s a good day or a bad day. Only when I have swollen joints is it apparent.

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

I’ve always been the type of person to crack jokes when things are tough. I like to find something to laugh about to keep from getting too down. In the last few years, though, I’ve been getting better at talking about how I feel, especially with my husband, and I’ve realized that saying things out loud helps me cope better than anything. Even if it’s just a “ack, I feel like crap today,” it’s better than keeping it to myself. About eight months ago I started a blog talking about my life and arthritis and it has been a huge help. Before that I was very private about my arthritis, but it has pushed me to open up and discuss it – a very good achievement.

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

Currently I am taking Methotrexate and Enbrel to stabilize, but I have been on many other arthritis medications in the past. Most recently I was on Remicade (for about five years), but I decided I needed a break from such a harsh medicine, so with my doctor’s support, I took six months off from meds. It was a great experience but unfortunately I learned I need a little help, so I started up with Enbrel for the second time since my diagnosis. I also have an emergency bottle of Prednisone in my medicine cabinet for any surprise flares.

I’m a definite believer that diet and exercise can make a huge difference on life with arthritis. I did an elimination diet to find out if I had any reactions to specific foods and learned that dairy products and many grains cause significant pain in my joints. I switched to a “paleo” diet and also got connected with a personal trainer, recommended by my doc, who specializes in helping people with physical issues of all sorts. Now I try my best to have a good balance of diet and exercise along with my prescriptions to treat my RA. So far it’s going well!

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

Recently my husband’s job moved us from the Pacific Northwest to Oahu, Hawaii. It’s been a crazy transition, and I’m still trying to figure out how the change affects my arthritis. So far the stress of moving has made the biggest impact, but constant barometric pressure should be a positive! The process of moving and finding a new rheumatologist are added to the things I currently write about in my blog: lydaclark.blogspot.com.

Other than that I write mostly about my life being young and married, parenting two kitties, and attempting to figure out what to do with my life! I love meeting new people through the blog, especially others with arthritis, and I post something new every day. I started the blog with other young adults and kids with RA in mind, knowing that the most positive support is simply to see someone else out there who has RA living a normal, happy life. I hope it helps!

1 Comment

House With ZERO Stairs

© Sebastian Oleksik

Architects: Przemek Kaczkowski & Ola Targonska
Location: Wroclaw, Poland

The clients, a middle-aged couple, approached us with one definite request – they wanted to build a house with no stairs, a house that would be equally practical and enjoyable when they get old. The site offered no obvious clues – a flat piece of land in a second line of buildings, in a suburban part of the city of Wroclaw, among disappearing traces of a rural past, surrounded by a chaotic mix of houses of all styles, materials and conditions.

Read More: http://www.archdaily.com/182245/house-with-zero-stairs-przemek-kaczkowski-ola-targonska/

2 Comments

More Chronic Illness Blogs

Miss RA
I live in Slovakia, 21 years young, I study at local university and by that, I work part-time at advertising agency. I have fiancé, great and big-hearted man. I belong to lovely family that is a perfect team to be part of. I love new technologies, online marketing, lovely small things, relax and shopping. And I learn how to live with chronic, painful illness, rheumatoid arthritis.
Read More: http://miss–ra.blogspot.com/

Vickys Rheumatoid Story
My name is Vicky. I am 26 years old. I got a condition called Rheumatoid Arthritis at the age of 23 after i sadly lost my mother. She was my world, my everything. At first my doctors thought it was grief which is perfectly understandable in the circumstances. Eventually i found out i had Rheumatoid.
Read More:  http://vickysrheumatoidstory.blogspot.com/

Oh My Aches & Pains!
Here at Oh My Aches and Pains! (OMA&P!) I write about my adventures learning to live my best life despite chronic illnesses. I share my journey with you, my readers, to pass along the lessons I learn to help you live your best lives with chronic illness too. My blogging goal is to make life more fibro-friendly one post at a time. Along the way, I am developing an expertise in successfully managing multiple chronic illnesses.
Read More: http://www.ohmyachesandpains.info/

Chronic Muse
I’ve lived with Chronic Fatigue Syndrome since I was 12. This blog has come about because I wanted a way to express my creativity, especially during the times when I am housebound. I hope to share things that I find inspiring & thought provoking. I don’t want this blog to be exclusively about living with a chronic illness, but sometimes I will write about the challenges & change of perspective, that living with an illness brings.
Read More: http://www.chronicmuse.com/

AIM-UP!
Autoimmune Meet Up Blog – there are four of us writing this blog so check us out. Join us! Don’t go it alone aim-up!
Read More: http://aimupwithus.blogspot.com/

More resources and blogs: www.rheumatoidarthritisguy.com/links/

2 Comments

Confusion

Over the past couple of weeks, I’ve been having moments of “confusion.”

I don’t think that they’ve been a result of the severity of my pain, as by all practical purposes it’s been within the range of what I normally experience on any given day. I do think, however, that they’ve been a result of the frequency of my pain, which leads me to more clearly understand something that I might not have understood before: even when pain is chronic, there are definitely times when it’s more chronic than less chronic.

The pain does not need to be at its peak to wear you down (although yes, this alone will often do it.) The cycles only need to be frequent…and by frequent I’m talking about 2-3 times a day. The actual moments don’t last too long, usually between half an hour to an hour…but instead of having an entire day to emotionally recuperate from these episodes, I find myself with only a few hours. I still haven’t recovered from the previous bout of pain before I find myself moving into the next bout of pain. In addition to the physical fatigue, this can also cause a lot of emotional exhaustion.

But at least I’ve recognized this as such…and as usual, the lesson did not come easy. I was actually pushed towards the edge, once again, a couple of days ago when I was riding a bus to the center of town. Within the blink of an eye, my world seemed to turn upside down. I didn’t know where I was, or what I was doing. My mind had, indeed, caved in to the constant pain. I was confused, and I was frightened. Nothing seemed familiar to me, except my breath. So I grabbed on to that, and just as quickly as I had plunged into the confusion, I was back to where I was just seconds before. I knew who I was, I knew what I was doing, and I knew exactly what was going on.

My mind was tired.

And even though I haven’t experienced these feeling for years, they still evoke a sense of familiarity. Last time I was in this phase, though, I just continued to get more and more confused. I couldn’t understand why my mind seemed to be turning against me, why it wouldn’t just push through the pain like the rest of my body seemed to be able to do.

I had another one of these episodes of confusion yesterday…but instead of getting scared, I told myself to just try to experience what was going on. If my mind didn’t want to respond as readily as I was used to it doing, so be it. Let it roam…but in a manner in which I could guarantee that I was safe. So I powered up my word processor, and started putting some of my thoughts (as confused as they were) down on paper. I’ve since gone back and read it a couple of times, and I’ll admit it doesn’t make too much sense…but at least during those few minutes, when the pain was it’s worse and my thoughts seemed to be spinning out of control, I did have a connection that I could grab on to.

I don’t know when these episodes will pass, but at least I have some additional confidence, something to grab on to, when it just plain out feels like I’m losing my mind. And most importantly, I’m talking about these feelings, instead of keeping them secret.

My mind is indeed tired from the pain. I’ll continue to give it as much rest as it needs, and I know that I’ll soon be better.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

13 Comments
Cammie-Solis

Cammie Solis

Real Profiles of Rheumatoid Arthritis
Photos © Cammie Solis

Name?

Cammie Solis

Age?

50 years young.

Location?

Phoenix, Arizona, United States

How long have you lived with RA?

With an official diagnosis 4 years. However I had pain, stiffness and swelling at least 1-1/2 years prior to that.

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

First and foremost do not panic. You have RA, it does not have you. It does not make you any less than you were before; It certainly does not define you. Then, take a deep breath and begin to find out all that you can about RA. Be an informed and empowered patient, it will make you a better advocate for yourself.

Also, listen to your body and find a doctor who listens to you and who values you as the most important stakeholder in your care.

Do you use any mobility aids?

It took me a long time to admit I needed it, but I have a cane that I use when I have need of it. I also use an electric can opener. I really need to find a good tool for opening jars though. It’s on my RA “wish list” I use a brace for my hands when they are acting up. A few months back I spontaneously damaged a tendon in my left thumb. (RA can do that.) I had to use a brace for a few weeks then.

How has living with RA helped to improve your life?

It has given me a greater awareness of just how precious every moment is. I take nothing for granted anymore. I want to make every moment count in a positive way. Even though it isn’t always easy I want to take even the bad moments and make something positive from them.

Having RA has helped me to slow down and to pay attention to things I might have otherwise missed because I was in such a hurry before. Those little daily graces that come into our lives and if we are speeding through we just might miss. Like listening to the the sweet sounds of the birds singing in the trees outside my window, hearing a symphony that is in the gentle rain fall, or the beauty of the sunrise as it dances across my bedroom in the morning and caresses my face telling me it is time to wake up, smile and give thanks for another day of life.

Do you have any visible signs of RA?

A couple of my knuckles have started to shift. I remember waking up one morning and my hands were stiff and swollen. I could see that the third finger on both hands was swollen looked different. I remember thinking this is it; my hands are going to be the first joints to be affected by this disease. RA has affected my gait. I don’t walk as I used too. My walk is off center.

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

My faith is the most important thing that helps me cope with my disease. It is a source of strength for me and if I didn’t have my faith to lean on I think I would be in worse shape than I am.

My family, my faith family, and my support groups are also very important to me. They are great sources of strength and support. I couldn’t make through my RA journey with out any of them.

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

Methotrexate, Humira, Folic Acid and Oxicontin.

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

When I am not in a flare I love to cook and bake. Being in the kitchen brings me such joy and pleasure. I love the wonderful smells that waft through the house and fill every nook and cranny. Reminds me of my childhood times in the kitchen with my mother and grandmother. I also love to sew and quilt, but have had to scale back since the fine motor it requires makes my hands ache after a short while. I love to spend time with my sons and our 2 dogs, Bandit and Chembow.

4 Comments