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.
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.
Partners – Where would we be without our partners? They are often not just partners but caregivers. Tell your partner’s story. And if you do not have a partner what will your ideal partner be like, or do you even want one?
Partners. Well, from what I have seen in my lifetime and heard, it is very important if you are going to have a significant other or spouse, it certainly makes a major impact on your quality of life if you have a good person that is will to be by your side. Sickness, temporary or permanent will surely bring out the worse in some and I have seen divorces and just mean treatment. With those things in mind, I have decided to choose carefully because I know RA is not going anywhere and I would rather be with one that is compassionate and patient. These are just two of the qualities along with others I look for in a person.
As RA resurfaced in my life five years ago, I was devastated and really down about the possibility of being in a relationship decrease all the more. I believe quite a few singles who have RA or any other disease feels this way. I didn’t want to tell anyone I dated I had RA. I had to figure out if you should say it sooner rather than later. I figured it was best to say something depending on if the getting to know each other phase was going well. If not, then it was no need to go into detail. And also, details needed to come in phases, as necessary, and in small doses. They don’t need to know everything in an hour. That is overwhelming! Here a little there a little.
Yes, I want a relationship and then marriage. But, I do not want someone that will add tremendous stress to my life.
Pain, but no gain. Pain meds, but no gain. I can’t say I have taken Opium for pain but, I have taken Tramadol for severe pain. I take a prescribed Naproxen that really doesn’t do much for my pain. I can only take it as needed but, it’s always needed. I do the best I can to get through the pain. You cannot take Naproxen everyday and you cannot take it when you are on Prednisone. So, I take Prednisone when I am in a flare. I take Naproxen when I am in pain and it makes it dull. It’s still annoying and uncomfortable. I’d rather suffer than to take Tramadol because it helps greatly with the pain but, as my Granny use to say, when you are without your whits, “It makes you foolish.”
We experience pain everyday and that is hard for people to believe. It is hard for doctors to believe and I wonder are there any doctors with RA and Fibromyalgia? A scientist? A research technician? Perhaps you can confirm.
A low grade pain in between the webbing of your fingers for 24 hours and three or four days can drive you up the wall. A pain in your hip or sciatic nerve will have you walking like the zombies from the Michael Jackson video Thriller. But this is not THRILLER this is worse. This is life most of the time, from here on out, until they find a cure. Until then, here’s to heating pads, ice packs, massages, pain meds, herbal remedies, prayer and whatever you need to get through it.
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.