Sometimes I go to bed feeling defeated. Sometimes I rise with power and sometimes I rise with a press in my spirit. I do not know why some of our lives have more obstacles than others. It’s not because we are special as we have been told (I don’t believe that). It’s not ALL because of the choices we make. But it’s always about the response. I believe it’s simply because this is our lot. This is our path. This is our journey and everyone’s journey is different. That’s it. I got this today with the weight of the world on my shoulders and tears in my eyes. I got this.
A few weeks ago I posted in a rheumatoid arthritis support group a tip on relaxation. One of the tips involved soaking in a tub to help relieve tension. And that is where the drama from the trauma began.
I define it as trauma because you must be experiencing some type of trauma that pushes you to release drama on unsuspecting strangers. Sadly, people that deal with you on a regular basis know you are about dramatization. They know that when they see you, you bring the drama. You see, in the comment section there were responses to my post like: I CANT SOAK IN THE TUB! HOW IS THAT RELAXING? I CAN GET IN BUT I CAN’T GET OUT. HUMPH, THAT IS SURE TO CREATE TENSION AND NOT RELAXATION. I AM TOO LARGE FOR A TUB. I HAVEN’T SAT IN A TUB FOR YEARS. NO WAY THIS CAN WORK. One lady even said to me I should have modified the post. I wanted to say, “Ma’am, I didn’t write the article. DUH. And you should have modified your thinking.” BUT…I respect my elders most of the time (because I don’t believe it’s okay to be 80 and say whatever you want to people). Also, the Spirit told me to be quiet. She’s traumatized by Rheumatoid and many other issues. This is her sadness, pain, hurt, gushing and lashing out.
Pause. When you see a post of something that you don’t like such as one that reads: “I love strawberries.” Do you hop on and respond: STRAWBERRIES ARE DISGUSTING. I HATE THEM. THEY ARE THE WORST FRUIT ON THE PLANET. CAN’T SEE HOW YOU EAT THOSE. Has it ever occurred to you, that post was not for you? I see people raving about things that are not for me. Unless I see a “what do you think?” I don’t bother UNLESS they are family or close friends. Many times, I don’t bother then. It’s one thing to say you don’t like berries or I am allergic but I wish I could eat them. It’s whole other thing to BASH and INSULT and have a total meltdown over nothing. A simple positive post or someone’s opinion over if they like pumpkin spice lattes (ugh).
Press play. I wonder did those people stop and think, I can do ALL of those other things except soak in the tub. Great article. No. They saw the ONE thing they couldn’t do and “went to town” about it. They didn’t think: “Gosh, I can follow all of these tips in the shower, in my shower chair, or however it is I get clean.” Nope. They honed in on what they could not do. The trauma of what I cannot do. The trauma of WHAT I USE TO be able to do.
This trauma is VERY real. I know about it. I live it and if you keep on living, as the elders say, you will know it, too, in some shape, form, or fashion. Sometimes, I think about my life B.R. (Before Rheumatoid Arthritis Disease) and B.F. (Before Fibromyalgia) and MY GOD! I miss ALL of the things I could do. Even the simplest things. Sometimes I stay in those memories a little too long and I become sadden, blue, depressed, compressed…oppressed. And then I have to free myself from those thoughts with therapy, journaling, talking to a friend, or…THINKING ABOUT ALL OF THE THINGS I CAN STILL DO and even if I have to modify them or have help they still can be done! “Glory to God!” in somebody’s southern church goer voice (:-D). You can heal yourself, or get some help, from the trauma of what has happened to you, whatever it is. The trauma produces the drama and quite frankly, people get tired of it. We know you are hurt but, there is a more EXCELLENT way to deal with it and release it. It’s called prayer, meditation, yoga, sound baths, therapy, Yeshua, Yaweh, spirituality, your choice of religion, forgiveness, etc. It’s called reading a books about it. Going to your temple, church, mosque, and REALLY walking in your religion. Developing a relationship with your Creator. SOMETHING! Something other than bringing the drama, spreading the hate and hurt. Lashing out has cause your relationships to be severed or strained.
What can you do? Huh? THINK ON THOSE THINGS. Think on the things you can do! Those things are TRUE, too. Those things are lovely. Those things “are” admirable. Those things “are” excellent and praiseworthy. Think about such things!
I don’t know what happened last night (Sunday night) but, I was ready for a good night’s sleep. Instead I woke up through the night tossing and turning. In the early hours of the morning I had a strange dream and then I felt pain in my right shoulder down the shoulder blade and in the bicep area. The usual suspect. It was too early in the morning for pain medication because I had things on my To-Do-List and I did not want to oversleep.
When I did wake up, it took me about an hour and a half to get out of the bed. I felt heavy and groggy. I put one foot on the floor, then the other pain shot through my back. And just like that it was gone. I got coffee on, some breakfast on the stove and in the oven. I sat down at the computer to read some emails and I realized that I had no idea what I was reading. I decided to do some other business and it was becoming increasingly difficult to comprehend each sentence. I knew then it was brain fog. This is something I was determined to do today, needed to do and it took me forever to understand what I was doing. Also, reading instructions over and over. This is brain fog. It is mentally exhausting. Draining before you can get on with a productive day. Especially, it involves reading of any kind, comprehension of any information, even if you are just reading for pleasure it’s like, “What did I just read?” It’s not longer pleasure, but a pain in the butt.
My head felt like it was stuffed with cotton and my thoughts were trying to get through. I thought I could feel my brain trying to connect the dots and that translates to even conversations seeming difficult. I can hear my self pausing so many damn times I feel and sound stupid. Of course, I know I am not.
“How can I savage this day? How can make the most out of it?” I asked myself. I thought about something Iyanla Vanzant has being saying lately during this pandemic and quarantine, “Instead of fear, why not possibilities?” So, I said to myself, instead of agitation about what I can not do, instead of frustrating the hell of myself with all f the reading, typing, thinking, talking, etc of the day I had planned, why not see what else I can do that does not involve deep concentration. I slather pain cream on my arm to dull the pain. I decide to tidy up my work space,
I finish tidying up my room. I worked on a crochet project. I was able to take care of some other financial business as the evening came around and my mind seem to work better. I got plenty of water down to help. I also did yoga and meditation to help. This is many of our lives with Rheumatoid Arthritis disease (not Arthritis) and Fibromyalgia. We call it RA fog or Fibro fog. Yesterday, I think BOTH were at work. I finally gave in to pain meds tonight. I need a better tomorrow.
A bamboo wreath from Dollar Tree, which I already had.
Leftover twine and tweed-like ribbon from a “cowboys & girls” themed party, tape, butterfly ornament and flowers picked up on an essential run to Dollar Tree.
I tied three pieces of twine together like a long rope and wrapped it around the wreath, then securing both ends with tape. I did the same with the other twine ribbon.
The bamboo wreath has slithers of space and after I cut the flowers I stuck them in those spaces. It took some maneuvering and rearranging them to get the look I wanted. It took about an hour and a half to finish. As usual, it may not take you as long. My hands were a mildly achy during this task. However, I was determined to finish. I try to make my spring wreath one that can be used throughout summer. It saves on money, time, and work.
I had plans! I vowed to not be at home tonight. I had cute dresses lined up to choose from. I was hanging out with singles. Maybe have a cocktail and enjoy great conversations. It turns out that my body had different plans. I’ve come to adjust to this most times and I know when to push through and when to stop. Rest. Yield. But I really, really, wanted to get out of this house!
I make chocolate covered strawberries every year. I’ve done this for almost 12 years. Yesterday, I had a very long day and lately I’ve become unusually tired in the afternoons. Yesterday was a day where things popped up left and right and put me behind on making berries. It also became an evening of pain with fibromyalgia and Rheumatoid. I did sleep sound but when I woke up it was hard to get out of the bed. My eyes were sore. I got up and got going. I thought my body would catch up with my mind and emotions but it never did.
So, instead of having a blog about my fabulous outing, here is one about my FUZZY night in.
I soak my hands in warm water and Epsom salt. They hurt from dipping berries. I order from the wing place literally one light away from my home. I decide to make this night a guilt free, indulge in web surfing, TV watching, anti lovey dovey watching movie night. I take a hot shower, get my FUZZY socks, and I chat it up online with whomever wants to talk. Whomever is home just like me. I’m in a few of my groups chatting and cheering up folks. I don’t answer the phone for anyone that is energy draining, complaining, disagreeable, or argumentative. Sorry, not tonight, I am in chill mode. I’ve got my incense burning and the name of the scent is Blessed Rest. And DEAR GOD do I need it! I’m bypassing the glass of Stella and opting for baked chocolate chip cookies and milk.
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.
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:
Uneducated about Rheumatoid Disease and only know the basics, if that
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.
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.
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.
Dealing – How do other diagnoses impact your RD and its treatment?
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.
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)