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

 

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RA BLOG: Limiting Pity Parties

Pity has a pit that is hard to get out of once you fall into it. If you’re going to dance around it, do so from a distance and make it less than often.-Nicole Jackson

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I can tell you to stop feeling sorry for yourself, never feel sorry for yourself, or that it’s okay to feel sorry for yourself. Either you do or you don’t or you use to. Perhaps you have a different personality and you never felt sorry for yourself. If this is you, then I might suggest you have some compassion, some empathy, or try to understand those that do.

Feeling sorry for yourself can lead you into a pit. There is a difference when it comes to having a pity party…parties must come to an end and the sooner the pity party ends the better. You see, if a person falls into a pit of pity then that is a very dark place. Some never make it out and it turns into a debilitating way of living and approaching life. It’s all about what you use to could do and all about what you can’t do now. It focuses on what RA or an illness or disease has taken away from you and not what you still have left. Or what you can obtain now! It’s all about your problems, never about solutions. It’s about “I can’t before you try” or a “I tried once and I’ll never try again.”

I’ll be honest with you. I’ve had some pity parties way before Rheumatoid Arthritis exploded into my bones. I am sure it was the talking of wise people, encouraging people, that said a combination of “You’ve got to get over this, get over it, feel what you feel, don’t feel, etc.”that lead me to a method that has lessened my pity parties and the time spent in them. The method for me is, depending on what has happened and the depth of it, is: PUT A TIME LIMIT ON IT and start shutting the party down. I can’t tell you not to throw one in the first place, I don’t control how you feel no more than you can control how I feel. But, if you are going to go there, know that you can’t stay at this party too long and no one else wants to stay too long either!  Your party can turn into a PIT! I limit myself to 5 minutes to a few days and then I have to, I must start working my way out, regardless of how I feel. REGARDLESS OF HOW I FEEL.

You work your way out by moving, physically. You work your way out with prayer. You work your way out with telling yourself the TRUTH about yourself (who God says you are) and not who others say you are. You build yourself up and instead of tearing yourself down. This is how you get out of the pit or shut the pit party down. You see a therapist, you see a pastor, you use the skills, you get a self help book, or you surround yourself with a support group. Whatever you have to do, you do it!  (But, it’s hard Nikki…well, don’t let that stop you)

~Nikki

 

 

 

Sunday Morning Coffee Musing: RA Blog: An Extraordinary Life

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I have a word of encouragement to all, but especially for those who have  rheumatoid arthritisfibromyalgia, lupus or any other illness or chronic pain. You can still live an extraordinary life and you can still leave an extraordinary legacy. Now, how you do that is totally up to you, but I urge you to ask your Source. Whether you are waiting on healing or whether you have accepted this assignment, I don’t know. But in the meantime you must reach beyond your pain and into your heart. And let me point this out to you; the extraordinary is not so much found in what we think we are, material things or grand adventures, who we were before this illness/dis-ease, we were extraordinary then and we are NOW. The extraordinary can be found in everyday things and people that surround us. And most of all within! Maybe you have recently found out you have one of these illnesses or dis-eases and you are devastated. You are trying to find your bearings. Don’t worry you will. I’m speaking from experience and when you do, when you come up with your new game plan, with your new approach to life, I will still urge you to live this life with extraordinary #action #thoughts #compassion #love#truth #wisdom #courage #boldness and #passion. Life itself is #extraordinary all on it’s own. And the truth is while these things physically attempts to wreak havoc on our bodies (succeeding or not) and life, here is something to remember…the real battle is either won or loss in the mind.
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~Nikki

If You Must. RA Blog

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The last two years for me have been very difficult times. I have been fighting for disability. I have not worked because I cannot hold down a fulltime job and all savings have been depleted. I had a new diagnosis in 2015 of osteoarthritis in my right toe (I had surgery for halludux rigidus) and this year I saw a report from one of my doctor which stated osteoarthritis in both knees (and decrepitus). Every time I go to the doctor or have tests I have anxiety attacks. I was tested so much this year for breathing problems ffinallyit was diagnosed as sleep apnea and dyspnea. I went to the doctor last week and I was told I need medication for diabetes. Also, a few months ago, after being tested numerous times, I now have peripheral neuropathy in my lower limbs and carpal tunnel syndrome in both hands and upper limbs. Bouts of depression are often.

I have had plenty of reason to look back woefully, angrily, and puzzled. Recently, in gathering medical records, my pediatric doctor office was able to find my diagnosis of Juvenile Rheumatoid   Arthritis. I thought I had it since I was 12, but the symptoms began at 8 and diagnosis was at 9. I read the letters and I noticed how kind, compassionate, and thorough the specialist who informed  my doctor of the findings as they communicated back and forth. In reading those forms I cried because I began to remember vividly those painful and uncertain days. It also gave me a clue as to my left eye having blurring problems I had forgotten it started when I was a child. It is so intermittent and this year an ophthalmologist saw the problem. The one sentence the pediatric rheumatologist stated was for girls, at such a young age, rheumatoid arthritis has a “smoldering effect.” Yes. How right he was.

How can I look back, if I must, forgivingly? I’m not sure exactly what top forgive. In looking back then and now, longing for when I was okay. The window where I felt no pain. The time when I knew exactly where I wanted to go and all I wanted to do. The place where I was so optimistic About going in my life and that “here,” whereII am now, is a place I never saw because I never envisioned it. And I am not talking just for the diagnosis of RA and the other laundry list, but life overall. As my therapist said last week, break it down, piece by piece, to not get overwhelmed. I guess I forgive it piece by piece and understanding I had no control at that young age over a disease and I don’t have much control over it now. I do have control over how  deal with it and which direction to go forward. Looking forward prayerfully…no problem. I have no choice as far as I am concerned to constantly pray about my future. I try my best to be in the NOW and remain grateful. Though it is very, very hard at times.

~Nikki

Unsteady: Depression and Anxiety

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From depression to PSTD (which is not just for soldiers), I think about how unsteady the mind and emotions can be. I think about how physical illnesses can create a certain unsteadiness in our lives. We are often trying to hold onto ourselves and others. We are often seeking someone to hold on to us during those times the winds start blowing in our lives and the oceans of our emotions start to rock and the wind of thoughts began to blow. It’s a scary state to be in.  A very fragile state.

You are trying to stay afloat. You are grasping for your tools to help you pull through. You hope you make it. Sometimes you do and sometimes you don’t. Sometimes you wish someone would simply hold onto you and give you the balance you need and at the same time you don’t want anyone around. (Side Note: If you are the person trying to hold onto the unsteady person, sometimes your presence, YOUR LISTENING EAR and your silence and your prayers ARE THE ANCHOR).

Last night I found myself overwhelmed with helplessness as I could not help a parent who is suffering from an illness only to come home and open up a letter of disappointment that sent me thinking about a decision I felt pressured to make. I opened another letter of a bill that was greater than I imagined and could afford. I then hopped on social media to find out about a horrific death of a doctor that saved my life in 2001. It was too much. The stress, the anxiety, the fear, the concern, the helplessness, the anger, was coming in relentlessly like pounding waves. I was between crying and throwing something. I needed to talk, but to who? I don’t trust people. People don’t understand. To God? Eh….not right now. I just don’t have words. I am grasping for something to pull me out or keep me afloat. And then the stress brought on physical pain. I read. I cried. I prayed. I cried. I listened to music. I cried. I went to bed. I woke up.

I think I just stayed afloat. I think it was the Creator and my angels…they love me enough to not let go. And I love myself enough to not let go of me.

~Nikki

 

REBLOG:RA – Rheumatoid Arthritis-The Lost Understanding-Why We Truly Deserve — RA AND THE FAMILY FIT

Complicated though it may be, there is no reason known why Rheumatoid Arthritis shouldn’t be UNDERSTOOD. Will people ever understand what it really is. Will they ever truly get that it is simply not the arthritis they have come to believe that it is. Though arthritis is a word in our diagnosis, it is far […]

via RA – Rheumatoid Arthritis-The Lost Understanding-Why We Truly Deserve — RA AND THE FAMILY FIT

Biologics: Feeling Some Type of Way

How perfect is this prompt of Biologics and how I feel about them since I started my first injection this Monday? When I read about biologics and TNF I was like whoa! Much like the gif you see above!

I was on methotrexate and when I got a new Rheumatologist, he immediately took me off of methotrexate and the daily dose of Naproxen. He said I’d been on it way too long! I wasn’t getting any benefit from it but, I thought heck, I “guess” it’s working in comparison when I first was diagnosed. So we moved on to Arava. It worked very well. I didn’t have morning stiffness but, it still took me forever to get it together in the mornings and in my Prince voice, rest his soul, “Forever is a mighty long time.”-Go Crazy.

This year, I began to have numbness and tingling in my hands, arms, legs so severe it would wake me up in pain. After, many tests, I have a bad case of carpel tunnel and I have some nerve damage in my legs. My RA doc took me off Arava saying it might be the cause. The Neurologists bumped up my Gabbapentin. The RA doc said we have tried everything let’s move to an injection. My heart dropped.

I don’t want to stick myself was my first thought. Secondly, I don’t know about fake things hooking up with my real things in my body. I understand that the pills I swallow are man made, but eh…biologics is an even greater gamble of infections and I am already at risk for infections. There is no proof it works any better but, I have seen raving reviews of Embrel and I have seen blank stares as if, it didn’t do much.

I gave myself my first injection Monday. I haven’t had any immediate side effects. I have not had any immediate relief as I am in a flare of two days now. So, I don’t know how I feel about Biologics. Sometimes, with RA and Fibro…I just get tired of feeling, thinking, and worrying so much.

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~Nikki