DAY 4: RA/RD: Community

 

Community – Our community is often hard on each other, even going as far as accusing others of not having RA when they can physically do more than others. How can we educate our own community on RA and how it affects each one of us differently?

I find the ones who seem to do the most accusing are the ones that are:

  1. Uneducated about Rheumatoid Disease and only know the basics, if that
  2. Have not learn to accept the spectrum of which they fall on as it relates to RD

We can educate our own community by blogging and joining RD groups and posting informative information as it relates to RD and from credible sites. We have to stick together and celebrate those who don’t have it as bad as one of us may have it. Also, there is someone that has it worst than you do and one must be grateful. We must learn to find the silver lining in our diagnoses. Sometimes, that means just being glad that we are still alive and here with our loved ones.

~Nikki

 

 

Day 1: RA/RD BLOG WEEK: DEALING

Dealing – How do other diagnoses impact your RD and its treatment?

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I was on my second and current Rheumatologist when I found out my previous Rheumy had diagnosed me with fibromyalgia. Imagine my surprise! I developed diabetes AFTER my diagnosis of the RETURN of Rheumatoid Arthritis DISEASE. I was first diagnosed at 8 years old and it went into remission after middle school and returned when I was 35. In the process of a surgery for Halladux Rigidus (Nodule develops on the big toe joint and causes PAIN, erosion, etc.) they doc said “Oh I removed the build up and I could see the arthritis and OSTEOARTHRITIS.” I also found out this year I have osteoarthritis in the joints of my fingers.

How do these things impact my RD? The fibromyalgia and RD was hard to differentiate in the beginning. I would have muscle pain and joint pain and I didn’t know if I had muscle pain because of the joint pain or if I had joint pain because of the muscle pain. It turns out that fibromyalgia, or any other thing I have can cause my RD to flare or cause me pain. My body is so confused about what is pain, when the pain requires an attack or not, how to receive pain and process pain, it doesn’t know what to do and when to do it.

It has made treatment very challenging to make sure some meds do not interfere with others. Some meds are used for the same thing. Also, when one thing is out of whack, like diabetes, it causes neuropathy and then fibromyalgia can kick in. Also, if I am dealing with anxiety or depression it can cause flares with fibromyalgia and RD. I have had both to flare at the same time and it is like being in a blizzard or a natural disaster of the body.

What makes the difference for me, or how I deal, is to differentiate between fibro and RD and I did that by learning (reading and researching from CREDIBLE sources) about each one. I treat fibro with pain cream, ice packs or hemp oil massage. I use pain medication or steroids for RD pain. I address diabetes by managing it. I address anxiety and depression by seeing a therapist and applying the skills taught to me by him that helps me to cope. I am spiritual and that helps SO MUCH. I meditate. I pray. I take pain meds for joint pains. I take my meds regularly ( I was not doing this at first because I hate pills but now I even take an injection I give myself). I put my CPAP on at night to help me to rest and if I need sleep meds I take them. REST is important in helping to prevent flares, pain and it’s important to rest to recover from flares.

It’s “alot” I know, but it is my life and I believe to approach it from a realistic and faith-based perspective gives me the balance I need to stay afloat.

~Nikki

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In rheumatoid arthritis, the body’s immune system attacks its own tissue, including joints. In severe cases, it attacks internal organs.
Rheumatoid arthritis affects joint linings, causing painful swelling. Over long periods of time, the inflammation associated with rheumatoid arthritis can cause bone erosion and joint deformity.
While there’s no cure for rheumatoid arthritis, physiotherapy and medication can help slow the disease’s progression. Most cases can be managed with a class of medications called anti-rheumatic drugs (DMARDS)

Disability and Reality Head on Collisions

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If you have been following my blog, then you know I am real, honest, and sometimes raw about what I think and how I feel. I am not here for the shock value, I am here because I love people that are honest about their thoughts, feelings, etc. Honest, not rude or mean or nasty. Just the plain old truth. So let’s dive in.

I hate being disabled, but I am grateful that I won my case. I hated my last job, but I was grateful that I had one and it could provide some income. I wasn’t making much and that job was killing me on every level. Yesterday early in the evening I thought I was having some sort of breakdown. I was going down slowly and then boom! I was falling down a dark hole that seem to never end. I reached out for help to a friend that wasn’t available. I reached out to a professional associate, she answered and provided a rope to pull me back to ground. I realized AGAIN yesterday, just how being disabled can restrict, constrict, and confine you financially. It can halt your endeavors. It makes me angry. It makes me sad. It makes me fell worthless. It makes me irrational. It brings up things from the past and shoves them in your face. Sometimes, down your throat. I felt like I could not breathe yesterday. It was anxiety mounting up to a panic attack. And depression was hovering around like a drone.

Before this episode, I had an encounter with a relative. Then I discovered just how limited I was  because of my disability with an endeavor I was trying to start up with a friend. And there came these waves of tears in my eyes that I fought back. By the time I talked to my professional associate, I told her 1st of all, I am crying. Secondly, I am ashamed that I am crying. Crying in my childhood was often made fun of or pointed out by my mother. “She’s so sensitive. She will cry if you look at her.” I thought something was wrong with crying. I also didn’t think it was funny. So crying to me can sometimes bring up a need to apologize for crying. In essence, apologize for being sensitive and weak (according to society, some friends, and in relationships). I do know a good cry is cleansing.

Rules and regulations for disability are necessary. They keep most people from getting over on the system. However, for those of us that wish to do things to help ourselves, it’s often a challenge to figure out exactly what we can do. It’s also a shock sometimes to find out you can’t do certain things and therefore you can’t reap the benefits or joys of those things.

This morning my ground is shaky. But, I am still here. I am still fighting and coping with my thoughts and emotions. This is REAL life. This is a MOMENT that I have to work through. I am fragile in this state and I know I have to protect my mind.

“Weeping may endure for a night, but joy does come in the morning,” -Bible

I am really ready for morning.

~Nikki

RA Blog Week Day 4: TGF Hobbies

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Birthing Autumn by Nicole Jackson 

Are hobbies important? You bet! Especially, when it comes to having an illness or disease that can zap the life and joy right out of you IF you allow it to. I don’t know if my hobbies are hobbies, so to speak. I mean since RA has taken a turn for the worse in my life I would like to think what may be considered as hobbies are really my lifelong passions that have been buried underneath the hustle of life and the bustle of a job. Most of my hobbies center around things I wish I would have done a long time ago or pursued.

Hobbies not only occupy your time, but should expand your mind and it should be something you enjoy. When I tend to my blog, one of my hobbies, I enjoy it. When I thrift and put outfits together, I enjoy it. When I find odds and ends, repaint them or repurpose them, I enjoy it. I get a great deal of satisfaction out of my hobbies. The things I don’t consider hobbies are writing (author), painting, crocheting and sewing. These things are more than hobbies to me. I view them as possible way to establish a new life since I have been left with me the remnants of my old life. Life, before RA. The core of who I am is still there. And to be honest, if RA had never came along and blew my old life out of the water, who knows when these gifts would have been reborn.

~Nikki

 

 

Does Weather Affect RAD(Rheumatoid Arthritis Dis-ease) and Fibromyalgia?

 

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The hurricane is influencing the weather here in my city. I can feel it and it doesn’t feel good at all. I really need my hands today. You can’t tell me weather doesn’t affect joints or muscle. I don’t understand after all the research and patient information, discussions about humidity and barometric pressure, why doctors have yet to admit this and state it as fact. What more evidence do you need? It may not affect everyone, but it is a fact for many of us.

Yesterday, I took every unnecessary item out of my purse and I still could not put my purse on my shoulders very long. Switching it back and forth I felt like throwing it across the store. But, that may get the attention of security and brand me a “crazy lady.” I don’t want to be the talk at the table of employees of my local grocery store.

As I pray and donate to the victims in Houston, I put my pain in prospective. I think of all of the autoimmune warriors there who are experiencing a stress I pray I never have to feel. And today we pray for New Orleans. We do not want it to be Deja Vu. As for me and my unpredictable, growing pain in my hands, wrists, forearms, feet, and ankles today, I sit aside many things on my “to do” list and whatever I accomplish today will be enough.

~Nikki

RA Blog: What’s For Dinner?

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One of my favorite, simple, and easy things to make for dinner is pizza. We all know cooking with RD (RA) or any other autoimmune disorder can be tough and almost impossible. We want it to be quick, easy, and as healthy as possible. You want it now as well if you have had a prednisone dose (most of us are extremely hungry because of this steroid for pain)!

Well, this may or may not be healthy depending on what you put on it and what type of crust you use. In the one above it’s a veggie pizza. You can buy veggies already chopped or chop your own. You can look in the fridge and just throw whatever veggies you have on the pizza. Think outside the box and take a chance with veggies like carrots and cauliflower. You can buy any type of crust you like or even make your own with cauliflower. I used a flatbread crust for mines. You can choose your sauce and add cheese. The one below is a buffalo chicken pizza topped with bacon. Pizza nights for us are usually on the weekend or it can be whenever you are just not feeling up to cooking a big meal. Add a salad and enjoy.

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When making the buffalo chicken pizza, I bake a boneless chicken breast (season it with Tony’s seasoning), cut it into pieces (slices or chunks, most of the time my daughter does this because of my hands), and let it soak in a buffalo sauce. Any buffalo sauce will do. I let it soak for about 10 minutes and then I toss them onto the pizza. Baking times are usually on your crust package. Once it’s done, I top it with bacon (optional of course) immediately so it can stick to the cheese as much as possible ( I cook the bacon while I am baking the chicken).

~Nikki

RA BLOG:YOGA, Shoulders and RA

Practice these poses on a regular basis and you will have very little problems zipping up your dress, washing your back, reaching your hind parts (lol) etc when you get older. Or if you are having those problems now the more you attempt to do these, or even simply grasping your hands behind your back, it will get better.

Someone is going to say “I can’t do that!” Well, yoga is not whether or not you can do a pose exactly like it’s done…it requires that you do the best you can and work your way to the pose or as close to it as you can. Over time, you can inch your way up to the middle of the back. It’s a slow process.I still can’t do either one of these if you are judging by the photos on the right. Yoga’s a no judgement, no competition zone. You may not even be able to close your hands all the way. And the other pose, where arms come around in opposite directions to the middle of the back, you can use a towel to gently pull up.

gomukhasana-arms

~Nikki

RA Blog: The “Eyes” Have It

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I woke up Saturday morning and noticed my right eye was a little red. When I returned home later on that evening both eyes were turning red, began to itch and I had pain behind both of them. Like RA in it’s grand fashion…it all happened suddenly. I have had itchy eyes before, swollen eyes, and this. I knew what it was.

It rarely happens to me, but for some it happens more often. I thought I would leave a link to an article that discusses all of problems that can occur with your eyes involving Rheumatoid Arthritis. Please take a moment a read it.

What did I do for my eyes? A cold towel, eye drops, and a naproxen for pain. They were better yesterday and today they are irritated this morning. I will have to give my doctor a call if they do not clear. I have never gone longer than 3 days.

http://www.everydayhealth.com/rheumatoid-arthritis/living-with/rheumatoid-arthritis-eye-complications/

~Nikki