Sunday Morning Coffee Musing: Drive.

What happens to the “drive”, the internal force that propels some of us forward when something happens to us we never expected? Some have this “drive” naturally that seems unstoppable. Some have to develop the drive and others have to force the drive. I’ve seen stories of terrible things happening to highly driven people and they power through, make the changes and keep going. I have heard stories of the opposite as well.

I don’t think I was born with a drive. I think it developed over the years. I never “needed” to win, to be the top of the class. I wanted to. If I didn’t, I remember feeling bad about it. I could only imagine how bad others felt that were not even in the “smart and gifted children” section. I wasn’t gifted in the sense of “smarts” but I was gifted. We all are. I had to learn how to lose gracefully. I had to learn how to be okay with giving my best. I had to learn that some have a gift that exceeds my gift of logic and smarts and that’s okay because I have things they don’t, do things they can’t, understand things they don’t, it makes us all DIFFERENT, UNIQUE, WONDERFULLY made. Uh, individuals.

Sometimes it’s hard for me to turn my drive off once it’s on. It doesn’t matter if I am writing, studying or researching an interesting subject, painting, crocheting, cleaning, fixing something, etc. I find it sometimes difficult NOT to do, to let it be, to give up. I first realized this when I use to repair laptops. We had to meet a quota and pass quality inspections. I would get stuck trying to fix a laptop, determine the problem, and get behind on my other work. I did not want to give it up and pass it on to engineering. And even after it went there, I would follow up. So much so, they rolled out a policy where engineering had to let us know what fixed the machine. It was a wise coworker, that said to me, “Nik’, you can’t fixed them all as good as you are. We are engineers and we can’t even fix them all. You have to know when to let go and pass it on. You’ve done all you can do.” It sure was hard to learn this lesson. I am a problem solver, a quality over quantity (but also how can I have both) type of person, a highest form of service type of person. If I don’t get a hold of myself, I will crash and burn. I will become overwhelmed. Burnt out.

I use to be this way until Rheumatoid Arthritis Disease hit. I went through depression. I wasn’t immediately the “Oh, well, let’s beat this, keep going, person.” My type of drive died the day I got the diagnosis that it was back, out of remission, and kicking my ass. The struggle was real. My drive had to be revived, put on life support, and weaned off. My adjustment was rocky. It was and is a spiritual journey that took a sharp left turn. It really seems more like reached a cliff and drove off.

I notice the drive a few years ago when I started to paint again. The need to FINISH it, perfect it, for hours, or in the late night or wee hours of the morning. I noticed it when I started writing again. The “I must finish this chapter, this number of words, this goal.” I noticed it in my need to create quality crocheted items, meet my deadlines, have excellent customer service. I also, noticed the obsession to do these things when I am on the verge of crashing. I would ignore my body and common sense. I would crash, burn, and be in pain. I would cause a flare up of pain and swelling, unnecessarily.

I said yes to some events this year, way more than I did last year and I was overwhelmed because I didn’t expect to be received so well. (I am spontaneously SPONTANEOUS.) I didn’t realize I needed as much inventory as I did and that I simply couldn’t create it fast enough because it takes time and I do have physical limitations. It was one night before the first event and I had driven myself into a frenzy that I simply GAVE UP. I said, “I HAVE WHAT I HAVE AND THAT IS ENOUGH.” This has been my mantra this season in creating. It has been my saving grace. It has not prevented pain or swell ups, but it has lessened my actions being the cause of them. I have hurt more from the activities, late nights, stress, no help, etc. I am hurting now! It’s that taking it to the edge, when necessary, but not going over knowledge that kicked in like the technology that tells you you’re about to back into the garage lol. Beep, beep, beep beep beep beeeeeee…. Overall, this has been the best learning experience in a long time. I needed it. I had to quickly adjust, improvise, make peace with having what I have and letting that be enough. I had to say no to other things, people. I accepted it. I am better for it. I feel like I am being prepared for something AMAZING and something that requires me to be able to manage my illness, peace of mind, and health on a very controlled level. Also, these business skills I have learned, have been priceless.

~Nikki

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 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 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)

Organization. The Little Things.

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I admit it. One of the things that I can never seem to keep organized is nail polish and all of the things that I need to do my own manicure and pedicure. It’s more of a challenge for me than ever to do my own pedi and mani because of the problems I have with my hands. I will go to a nail shop when I have the money and when I do not, I have to grin and bear doing it myself.

Which leads me to organization. I know it doesn’t look like having my nail polish in a crate, piled on top each other is “neat”, but I don’t mind it not being organized by color. I am just happy to have it all in one space! So,  I had a tub laying around and decided to put all things pedi and mani in it and add my crate to it. After I gather things from everywhere (linen closet, different buckets, and my room. I now store this underneath the bathroom sink. I actually had NOTHING under there. DUH ME.

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~Nikki