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

 

Sunday Morning Coffee Musing: Physical Limitations, Anxiety, & Will They Understand?

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“Nicole, you need to get out. You need to get with people that like to do the things you like to do. You need to go places you like to go and maybe you will meet people that like to do the things you do.” -Therapist

“Sounds like a plan. I am on it.”- Me

And as I began to search for a group, so began the anxiety. “Nicole, you never come around. Nicole, you hardly ever show up. Nicole, why can’t you go here, there, and everywhere. Nicole, I am tired, too. Nicole, I have done 20 things this week and you have only done 5 and you are exhausted? Why don’t you try ginseng, turmeric, more exercise, go gluten free, try the Keto diet, the Mediterranean diet.” Oh-My-Gosh would you please leave me alone is what I think, but I just nod my head. After all, you are just trying to help I suppose.

I joined a few groups and I started a group in spite of these concerns. I don’t know how it’s going to pan out. I don’t know if they will be like most people and “just don’t get it” or if finally, someone will get it. Either way, I will still be who I am with what I have and on a continuous path to growth. Hopefully, I can make some new friends along the way that enjoy the things I enjoy, too.

~Nikki

 

 

Sunday Morning Coffee Musing: What You Have Need Of

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You’ve been blessed with an inheritance, a lump sum of money, you won the lottery, or you have a good job or career and have managed to put away for retirement. Yet, you worry from time to time or constantly about the future and if you will have enough. Maybe, you are young or old, have a large family or a single parent, and you are doing the best you can. Let me tell you briefly, about my situation.

I am in my early 40’s, approaching my middle 40’s ha! (No, I don’t look it and thank you!) Well, I happen to become ill, could no longer work, blew through my savings to survive and raise a daughter that will be graduating from high school next year. I found myself in the disability process for three grueling years. I won my case. And I thought it would be a sigh of relief and it was. However, like any person that has to start from a setback, start from rock bottom, I worry. But and on my anxiety and man, it takes on a whole other form or worrying. How can I make it off this? What will I do when the surplus runs out? Will my other dreams ever take off so that I don’t have to be on disability? What happens in 3 years when I go for a review? What if they say I am okay and I don’t need it? What kind of job will I be able to do at 46 with my illnesses? Will I ever get the home I want? You see where I am going and then loop that in your head all day. That is anxiety. Go to bed and wake up thinking about the same thing.

This morning I heard this in my spirit, “There is no sense in worrying about tomorrow. Tomorrow has enough trouble of it’s own. You can’t add one day to your life by worrying.”

And then I thought, but don’t you have to plan for the future?

Spirit:”Be wise like the ants. But they don’t worry. And consider the birds in the air, the are fed everyday. The flowers are clothed and they don’t worry.”

Me: “But, what about my dreams, and goal, and plans, and life? What about that abundance? What about prospering? I don’t want to struggle until I die!”

Spirit: “God knows the plans created for you. God knew you before you existed in the womb. God molded and shaped you. You are carefully, and wonderfully me. The Creators plans for you are to prosper and to be in good health. You have choices. Choose life. Choose the things that will better you. Go for it. Do it. Be wise. Use knowledge. And God  knows the number of hairs on your head. Not one falls without his (her) knowledge.”

Me: Let me blog this and hope it helps someone else.

God, the Creator, the Universe, knows what you have need of. God’s plans are always for you to triumph, be at peace, be in good health, and to prosper. But you do have to do your part and if you’re doing your part, researching your part, then do not worry. God will do the rest. The Universe is working for you, always and never against you.

~Nikki

RA BLOG: Bad Blood

It started as a good day yesterday. Even though, it was raining cats and dogs. I managed to take care of a few errands. I started to feel my energy wann around 3:30 P.M. I was going to go home and take a nap before a birthday dinner of a friend. Well, when I got up I felt my shoulder ache. No time for this. I took a shower and asked my daughter to put some cream on it (it’s like a icy hot) because I did not want to take pain medication. It wasn’t 5 minutes after she put it on I began to itch like crazy…all over my back and face. I knew I was having an allergic reaction and it was possibly setting off an itching flare (unexplained undiagnosed flare the doctors can’t determine why or cause). So, I took my last Benadryl and a Fantominide cocktail which calms itching fast (learned that from a nurse in the E.R. when it happened the first time). I had to cancel my plans to go out…so much for margaritas!!! But then around 11:00 P.M. I started itching again…and I had to throw on clothes, make a mad dash to the grocery in rain to get more Benadryl because I was out! My parents are aging, my brother was at work, and other siblings are older than I am blah blah blah…I was on my own. I never want to bother anyone i.e. friends because they live too far and even if they live close…they don’t seem as if they want to be bothered if that makes sense. I’d much rather you bother me, than I bother you.

I made it home. Texted family I was ok. I woke up this morning, but could not get out of bed. Talk to Mom, didn’t tell her I couldn’t get up (didn’t want to worry her=she’ll call everybody-everybody will call me-I don’t want to talk). I got up to shower and discovered my shoulder still hurts, including, hip and knee. I make it out the shower, to the kitchen, put breakfast on at 10:15 and soon realize, I can’t stand long so I push it and sit. And write to you…

I spent money for a very famous fashion show today because fashion is my first love. I did not have money for the all day events and I don’t think I would have lasted anyway. But, to now think I may not even be able to make it to this world renown fashion show is gut wrenching. It is this very moment, well, all night really, I wonder if I can do it. If I can still pursue fashion with this evil disease and at my age of 42. I think about giving up. I think of all the problems that would come with it. I think…if only I was not deterred at a young age to NOT pursue fashion, I would already be doing it and perhaps well established. I know I have the gift. I may not know #@$% else about myself, but I do know that. That is the one thing I have always been confident in and comfortable with.

Getting dressed, doing my natural hair, painting my nails, wearing heels, forcing myself to walk straight, walking a long distance…

For the first time I contemplate if I am in over my head trying to reach for a dream that will not die…

~Nikki

 

Sunday Morning Coffee Musing:RD/Fibro Blog: I Want to Play, Too

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You remember what it’s like to get sick as a child and friends are outside playing. You hear the laughter, you see them running around playing a game of hide and seek, or playing with their superheroes or dolls. You say to your mother, “Mom, I want to go outside and play, too.” She says, “I know honey. But, you can’t. You’re sick and you have to get well first.” So, there you go. Back to the window to watch your friends play. Until you feel well again.

This is exactly how I feel many times as I watch the events of family, friends, and other events that play before me live and in living color on social media. I sorely wish I were there, too. Creating memories. Laughing along. Right there in the moments captured forever. Especially, the very big moments and events. I and so many others who live with chronic pain also live with unpredictability of the symptoms. And there we are. Trapped in the house, until the symptoms subside enough for us to go out to play again with everyone else. You may be disappointed and you probably understand. But no one, and I mean no one, is more disappointed and upset or even as angry as we are. We are many times at the mercy of a body we cannot control. And, for the record, many of the other times you see us out living it up, selfies and all, we are smiling and playing through the pain. Tough guys and gals we are indeed!

It makes me happy to see others happy and enjoying life. I know I will be there in the moment soon again. When you realize it’s not about others or you and your pain all the time, but it is collectively about sharing in the joy and laughter of others lives that fills your heart whether you are there physically or through videos, listening to the stories behind each memorable moment and looking through photos. Energy is energy and sometimes you have to experience it at different frequencies. Accept and embrace. Sad that I can’t be there? Yes. But the happiness that you are there, friends and family are there, enjoying life is greater than my sad moment…that shall pass.

~Nikki

 

RA BLOG: Enthesopathy/Enthesitis

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It started in January and it has not left me yet. I thought it was “just” joint pain from rheumatoid arthritis in the left hip giving me a hard time and keeping me tossing and turning at night. Surely, it will go away. It didn’t and I tried prednisone because I thought I was having a flare. That didn’t do much. I tried naproxen and it didn’t do much either. It got really bad and then during the day, instead of going away it just dulled and would flare at time. I called my rheumy.

“Come in for a shot!” Oh no! I didn’t want that! But as I went the next day, he examined me first and said, “No. You don’t need a shot. You have an inflamed ligament. Let’s try physical therapy. Once in physical therapy, I learned the name of this condition: enthesopathy. The inflammation of it is enthesitis. I have that.

“In medicine, an enthesopathy refers to a disorder involving the attachment of a tendon or ligament to a bone. This site of attachment is known as the entheses. If the condition is known to be inflammatory, it can more precisely be called an enthesitis.”

Last night was awful. It had been nagging a few days. The new pain medicine did nothing. I got some relief with the heating pad. My concern is that this could be a permanent condition and there could be damage as I researched credible sites that said this could be possible for those with an autoimmune disease.

As I try not to worry about it much, and face these things head on, it is very difficult when RA seems to present an obstacle course on top of the obstacle of life.

~Nikki