Day 5: RA/RD Blog: Buddy

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Buddy – Who’s your RD buddy?

I don’t have a pet or object, blanket, etc. that helps me, perse. What I do have is a Rheumatoid Disease group that I am a part of. This group is very interactive and supportive. There are people in it from all over the globe. For it to be so large, it seems tightly knit. It has it shares of woes, but those fires are usually extinguished by the administrators of the group. GREAT ADMINS is what keeps a group GOOD.

I found this group upon the return of RD, when it came out of remission. The Arthritis Foundation and Creaky Joints kept me informed. But, it was the community of Patients Like Me and RD Online group that is more like a buddy. I also go there not only when I am at my lows, but also at my highs and to uplift, support, others. It’s a give and take, an ebb and flow of the group that keeps me going.

~Nikki

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Day 3: RA/RD Blog: Disability

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Discuss your feelings about our position within the disabled community with variable disability.  How do you deal with limitations that are present some days and not others?

It’s a strange thing. One moment you’re seemingly okay and the next you’re in pain. You never know when you’re going to have a good day, a good few hours, or when pain and brain fog is going to kick in. You don’t know what part of your body is going to hurt and for how long. It’s enough to drive some mad, to depression, to anxiety, to God. 🙂

When I perceive I am going to have a good day or a good few hours, I start to do things I normally don’t do and sometimes I do them in a hurry just in case something swells or starts to hurt. A few weeks ago, I woke up feeling normal. I mean after I moved around, I still felt normal. I don’t know how to describe it, except feeling like I felt before RD. I didn’t know how long it would last so I started some intense cleaning of the kitchen, the downstairs bathroom and I made it to the living/den area before I began to lose stamina.

I deal with it as it comes. I no longer get angry. I do however, get upset sometimes. Especially, when it’s really something I want or need to do. I have to put it off or cancel. It’s hard to make plans, but I am a firm believer in making plans and following through. When I can’t follow through is when I am the most disappointed.

We also have to deal with people who may see us doing “regular things” or enjoying the life we have and question if we are really disabled. Disabled people have a right to enjoy their life, family, take vacations, shop, and do whatever they can on the level they can, when they can. You have no idea the things people go through in 24 hours.

~Nikki

Day 2:RA/RD Blog Week ADJUSTING

Adjust – How do you adjust to the affects of RD on your career, dreams, goals?

Wow! What a loaded question. In the beginning it was devastating thinking about all of the things I may no longer be able to do. My exact thoughts as I had a melt down were “What about all of the traveling I wanted to do? What about sewing and fashion? What about writing my books and traveling as a motivational speaker?” How on earth would I be able to do all of that if I can’t even hold down a 9 to 5 or 9 to 1?

I first acknowledged my disappointment and sorrow as some things died and somethings were modified. I was in awe when hidden gifts and talents emerged, came to life,  such as my abstract art and crocheting. They both happened on a whim although painting was always in the background. I was in Hobby Lobby exploring the option of crocheting after I saw someone with a crocheted scarf. There was a woman in Hobby Lobby, a customer, that was in the same department and I asked her about it. She was so happy to share with me how to get started. I worried about my hands so I researched and reached out to a community of crocheters and knitters and they recommend so many crochet hooks to use and so much advice on what to do about hurting and swelling hands. It dawned on me that there are crafters who have RD and other illnesses that have blazed this trail. I am not alone.

The biggest challenges I face when writing and learning patterns is brain fog and I have a hard time connecting things in sequence or remember directions that I read or are being shown to me. I have to sometimes read it over and over. It can be VERY frustrating. Like throw the crochet hook against the wall or crying because my hands are swelling and I am trying to type a chapter for a new book. The best thing about working on my career as a writer is that I get to decided when I can write. I keep a notebook in my room and I use my phone’s note pad to jot down ideas that come to me. I am looking into voice typing software as well. At times I may be experiencing concentration problems, anxiety or depression. I can decide not to work on a project or to write or paint. However, painting is therapeutic. I like to wrap the spongy tape around my brushes or crochet hooks to make them comfortable for my hands. I pave myself.

Being disabled has limited my income, but it has not limited the God I serve. I work on my writing and try to re-invent myself as a speaker and author. I take it day by day and try not to worry about if I become successful will I be able to do it. What if I have a flare and can’t make an event, or show up on set, flying can drain me, etc. etc. I dial it down a notch and remember I am not at that bridge yet.

~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)

Disabled. Doesn’t Work. Still One Phenomenal Woman.

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She said, “You chose a person that is disabled and doesn’t work over me.” As if being disabled and UNABLE to work made me the lesser choice. It didn’t help that he didn’t come to my defense with tenacity, anger, and “pissoffity” (extreme pissed off-ness). But you know what did help? Knowing who I am regardless of my disabilities and the inability to work.

“Life ain’t been no crystal stair”  is something Langston Hughes mother would say to him. I truly understand this poem at the age of 44. I look back over my life and it’s been filled with tacks, splinters, torn up boards, and no carpet. I’ve been reaching landins’, turning corners, and going in places where there is no light. In other words it’s been filled with one challenge after another, heartaches and heartbreaks. It’s been one bad break after the other. It’s been filled with PAIN and TEARS. I’ve been sad and lonely. I have been alone in a room full of people and lonely in a relationship. I’ve had bad things happen to me, #metoo and saw a dream die after a hysterectomy. I’ve been made a fool of and made horrible mistakes. I am sure anxiety and depression was here before I had a diagnoses and to mention some childhood drama and trauma. Teased, talked about, and bruised. Diagnosed at 8 with JRA and it made it’s return in 2010 as Rheumatoid Disease and brought Diabetes, Fibromyalgia, Osteoarthritis, and unexplained shortness of breath. Nope. Life ain’t been no crystal stair. And nope, that ain’t all folks.

However, I have raised a beautiful, bright, and intelligent daughter that is now in college. I have written three books. I returned to painting abstract art as a “black woman” and that may seem strange to some of the people in my circle. I have learned how to crochet. I have accepted my role as a spiritual teacher. I have found my authentic self. I keep rising from the ashes. Sometimes I am still standing and sometimes I get the wind knocked out of me, but I am still alive. I still believe in true, real, authentic love even if I never get to have it on this earth because I believe I have had it in another lifetime. I have learn to live fearless even when I am feeling fearful. I have went without so that my daughter could have. I love to give to other people. I love to fight for the underdog. I have traveled with friends and family and there are sunrises and sunsets engraved in my mind forever. It doesn’t really matter what someone says, even if it hurts. Even if it rubs salt in the wounds of dealing with being a different woman than what I use to be. I still know who made me. I still know I am fearfully and wonderfully made. I am not less. I am MORE. In fact I am a better woman because of all that I have survived and I look forward to spending the rest of my life thriving (with or without a man but hopefully with the one that matches my level of love and maturity).

Pretty women wonder where my secret lies.
I’m not cute or built to suit a fashion model’s size
But when I start to tell them,
They think I’m telling lies.
I say,
It’s in the reach of my arms
The span of my hips,
The stride of my step,
The curl of my lips.
I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

I walk into a room
Just as cool as you please,
And to a man,
The fellows stand or
Fall down on their knees.
Then they swarm around me,
A hive of honey bees.
I say,
It’s the fire in my eyes,
And the flash of my teeth,
The swing in my waist,
And the joy in my feet.
I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

Men themselves have wondered
What they see in me.
They try so much
But they can’t touch
My inner mystery.
When I try to show them
They say they still can’t see.
I say,
It’s in the arch of my back,
The sun of my smile,
The ride of my breasts,
The grace of my style.
I’m a woman

Phenomenally.
Phenomenal woman,
That’s me.

Now you understand
Just why my head’s not bowed.
I don’t shout or jump about
Or have to talk real loud.
When you see me passing
It ought to make you proud.
I say,
It’s in the click of my heels,
The bend of my hair,
the palm of my hand,
The need of my care,
‘Cause I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

~Maya Angelou

~Nikki

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

Vegas and RA: The Good, The Bad, The Really Bad and Ugly

I have shared with you my wonderful and brief trip in Vegas. The shopping, the entertainment, tourism, my fashion, and family fun. I know it seems so glamourous or maybe not lol! But, anyone can take a trip and it has nothing to do with having a luxurious job, which I don’t have. But, it has everything to do with finding the best deals and planning way, way, ahead. Remember, you can do whatever you set your mind to.

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Speaking of planning, when you have certain physical illnesses and diseases, limitations, etc. you have to learn to plan ahead as much as possible. We who have Rheumatoid Disease, Fibromyalgia, and other illnesses understand our dis-ease can be UNPREDICTABLE. So, this is where experience comes in, Google, and planning ahead as best you can.

  • I forgot my cute and much needed hot/cold reusable water packs. I have a small and a large one I usually take with me. You can find them at TJMaxx or on Amazon.
  • So, that was out! In Vegas there is WALKING, WALKING, WALKING, AND MORE WALKING! However, it is easily accessible for those with wheelchairs if you have one. So, don’t let that deter you from Vegas or anywhere else on this planet. I had my best pair of sneakers. This is not the time to break in a new pair. Go with a sure thing.
  • Pain meds ahead of time if possible. All meds on time. However, if I know I am going to have more than one drink, I will skip my meds. I am just being honest with you. You, however, follow your doctors orders. I’m not that big of a drinker meaning I can have it or not and still have a great time. I am allowed, per my doctor, a glass of wine per day if I want it. It’s not that serious for me.
  • Comfy house shoes with memory foam or something that is plush
  • Pain cream or gel
  • Foldable Flats and a purse that will fit them
  • Epsom Salt

Now, here is where it gets bad and ugly. I love heels and I can still wear them, but not the really high ones I use to wear. I blogged about that journey and halidux rigidus surgery a few years ago. I made the choice and sacrifice to wear some really cute heels to a club to see a celeb DJ. The walk there was fine. The dancing the night away was fine, but when I stopped I knew I was in trouble. The walk back was TORTUROUS. I can’t begin to describe to you the pain I felt. I knew I was going to have more than one drink so I skipped my meds. I had to rely on other methods and time to relieve my incredible pain.

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You are not suppose to walk through the hotel or casino with your shoes off. By the time my cousin and I got close to our rooms, we took off our shoes and sighed the biggest relief! Trust me! The picture below is how we felt after those “contraptions” called heels came off!

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But it did not stop there for me. I was swollen from the feet up to the knees. My feet were as red as fire and the neuropathy felt like shocks and this set off the fibromyalgia. I thought to myself, “WTH! I wasn’t expecting it to be THIS BAD!” But like I mentioned to you before, this disease is very unpredictable. I did not feel my bones hurting, but I figure they would be tomorrow. I could hardly walk on my feet and I had my plush house shoes with me. They only helped a little this time because the reaction was UNPREDICTABLE! I applied the pain cream and NOTHING! NO RELIEF!

 

 

I was like OMG and then I was like Dear God, please let this ease up. I tried to sleep and I could not. Below is a picture of the next evening (note I did well all the next day with my sneakers on), when we were going out again but decided on a fancy dinner instead. This is the results with flat shoes which is what they looked liked the night I took off my heels. I was in so much pain and discomfort that night I wasn’t thinking about anymore photos lol! But no lol! The only difference is the pain was minimum but the swelling was MAX. And the crazy thing is, I wasn’t in these shoes but a couple of hours. My feet were like, “No ma’am! Not again!”

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So, what did I do the night I had on heels and the pain was off the charts. I GOOGLED what to naturally do to ease neuropathy, fibromyalgia, RA. I read until I found something I could do. And here is what I will always want in a hotel from here on out. A good CLEAN (I am so OCD about bathrooms and what they look like) tub I can soak in AND once I get to my destination buy some Epsom Salt! This is my new thing to do or find a small pack if I am flying, to bring with me. Add that to the list. Thank GOD the Luxor Hotel in Vegas had a soakers tub! I filled it up with hot water, grabbed my phone and started a guided meditation session on chronic pain with my Inside Timer App, and soaked for about 20 minutes. I felt 50% better. If I would have had some Epsom Salt, I would probably have been at 75%. I was able to feel the difference and fall asleep.

The meditation app helped because I was in BIG pain and feeling so anxious, defeated, a bit jilted, and was slipping into a “Wish I never had this stupid disease rant” and I miss my old self. The meditation helped bring my emotions down and helped clear my mind and bring focus. Here I was finding the best solution to my problem at the moment.

I wish I could tell you that I won’t do that again. But, I don’t want to lie to you. Vegas is my YOLO ZEN place and it’s only once a year. I don’t how long I will be able to travel because of RA and it’s complications. I can tell you that I will bring a purse big enough for my foldable flats!!! I didn’t think I would need them because where we were going was close to the hotel. I did not factor in how much dancing I would be doing. Oh well, you live, you learn , you survive another day.

I had other pain in Vegas because of the walking. It’s like I said, this is not something I do every day and it’s expected when I travel. In the RA group many had to stop traveling or keep it to a minimum. I think I am midway at 43 with traveling. I have a few places I would like to see and hope I don’t ever have to give traveling up completely.

~Nikki