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 day in the red zone can range from feeling like you are drowning to feeling like you are falling down a deep dark black hole that has no bottom. Today, I felt like I was drowning which I consider, lucky. This is not so lucky for others. It’s really not lucky for me, but let me explain. When I feel like I am drowning, I feel like I am fighting to stay above water, to stay in the game of life. I am trying to listen to something positive, read, watch TV, talk to someone, write in my journal, do some yoga, guided meditation, affirmations, pray and to sit outside. When I feel as if I am falling down the dark hole I have nothing to hold on to or very little. I do not know when or if I will hit the bottom and if I will be alive or sane. I do not want to do any of the things I mentioned before. And I don’t. That to me is worse than the feeling of drowning in my thoughts, experiences, and emotions.
In the black hole, there is no hope. You may feel pain, you may feel numb, and I have felt the worse feeling which is darkness. I know it’s not a feeling…but it is. Today, I tried to do all I could early on to uplift myself out of this red zone. It was frustrating because nothing seem to be working or it worked for the moment then quickly passed. I also was in shoulder pain and hip pain that didn’t go away. I tried eating fresh fruit, opening up the door and windows to light. So, I decided that I would just wait until the storm passed. It comes with a thought that says, “I can’t wait until this day is over.”
So, in my searching for something to express how I felt about depression today, I found this explanation on Pinterest. I shared in on my social media to help others understand what people like me go through. At least, some huge part of it. Then I decided to write about it as I watch NCIS. I am glad the day is almost over. I pray and believe tomorrow will be better.
One time I went to the grocery store with a friend. We both needed to do some shopping and once in the store we went our separate ways. When we met up near the meat aisle, I was SHOCKED to see their basket. It was filled with junk, processed food, sodas, and juices mostly. I literally was shocked because here is a person that has health issues. No wonder when I cooked they needed to add incredible amounts of salt to their food. Even when the food was already generously seasoned. For a moment, I thought it was me. My daughter said it’s not you Mom, it’s them. They were use to what we call soul food with all of the soul, salt, and fat of the ancestors and they were conditioned to love junk food.
I get it. I get when the CDC, the health experts talk about underlying conditions are high in the minority communities. Poverty is high in the minority communities and the wages are low. There are food deserts. No one should have to travel outside of their neighborhood for food and some CANNOT! I’ve been to stores in one neighborhood where fruits and vegetables look TERRIBLE and go to the same chain in a nicer area and produce looks like it was picked that morning. Pair that with the lack of proper medical care, the disparities of care, the cost of health care, and to be honest add the MISTRUST, DISTRUST between doctors and minority patients. It’s a disaster. I have seen the doctor say “It’s not good for you to eat an entire box of ice cream” and upon leaving the doctor, the patient says stop by McDonald’s and get me a number 5, supersized, add a sundae to that. The unwillingness to take health seriously runs deep. “Those doctors don’t know what they are talking about” has been heard and passed on generation after generation. The idea that the doctors are trying to kill us, us being minorities, stem from the history of experiments done on and to minorities without their consent, knowledge, and against their will. The torture, the inhumanity, is disgusting.
My musing on health issues: Where there is a will there is a way. Where there is a will, there is an opportunity to research. I have Rheumatoid Arthritis, fibromyalgia, which both lead to diabetes and a slightly elevated cholesterol reading recently. I learned from a white woman, who I took care after she had a complicated childbirth, to ADVOCATE for your health. “I am a nurse and they still would not listen to me. WE KNOW OUR BODIES. If you can, find a female doctor. At least you may have a chance of her listening to you or understanding you.” These were her words to me in my 20’s. She told several male doctors, nurses, something was wrong, something wasn’t right. They dismissed her concerns and when she went into labor, she had to be airlifted after birth. I never forgot the conversation. It was later on I also learned that when you are African American, male or female, a minority, you REALLY have to advocate for your health. We are seen as less than intelligent and assumed to be uninformed. WE can comprehend and learn just like anyone else. Obviously, there are all kinds of well educated working class minorities.
I once had a black male doctor that told me I had acid reflux. I went to the emergency room a few times with incredible pain. I remembered what this lady said to me and I began to look for another doctor. The week before I saw my new, female doctor, I went to the ER because I thought I was having a heart attack. The hospital drew blood and dismissed me. When my new doctor drew blood she rushed into my room. What hospital did you go to? She rushed out the room. She came back in. She made a phone call in the room and lost it on the people in the ER! She said the labs showed my white blood cells count was HIGH. In a week I was schedule for emergency surgery for the removal of my gallbladder. It was inflamed, swollen, and on the verge of bursting.
I also had to advocate for my health with a female doctor years ago at a clinic. I had no healthcare because it was too expensive and I needed that money to pay my bills and take care of my daughter (you see the choices some of us have to make!). She insisted I had diabetes. I insisted for another blood panel test and to see another specialists for rheumatoid or lupus. She told me the clinic already spent money for a test on me last year. This is when I could no longer be nice. I had photos of my swelling joints. She did not want to look. I went ballistic. I was not ashamed either. I asked her was it her money? I asked her did she not think I had any common sense or an education because I was at this FREE CLINIC with partial payment plans? Do all black people have diabetes? I KNOW MY BODY. SOMETHING IS WRONG. THIS IS NOT DIABETES. She ordered another test. I had been suffering for a year. It turned out, after seeing another specialist she referred, that I indeed had Rheumatoid Arthritis Disease, and fibromyalgia, and diabetes was a result of the Rheumatoid. She apologized that same day I lost my marbles before she ordered the tests again.
I am not a health expert. I am not a work out fanatic. I do know ORGANIC and NATURAL foods are EXPENSIVE (and I could say hospital bills are high but, that’s irrelevant to someone struggling to make ends meet). Medication is EXPENSIVE. I have had to pay for 15 pills when I needed 30. I have had my parents “charge” my medication on their credit card. I have gotten a full bottle of pills and took them every other day or every two days to make them last.
I walk. I do yoga (gentle yoga, yoga for seniors, yoga for rheumatoid, fibro, lupus, etc…it’s out there). I don’t have to have a gym membership but, I do. There are YouTube work out videos. It’s not safe in some neighborhoods to walk. I don’t really like to walk in this neighborhood because I am not comfortable. In my old neighborhood it was different. It was better. So, I go to the park in my old neighborhood. You can find work out equipment at the dollar store. You can find equipment for sale on Facebook Market. Walking in place “seems” silly but it works. I don’t walk fast. I can’t.
Eating healthier? Choose more fresh fruits and vegetables. You don’t have to fry inexpensive cuts of meats. You can ween yourself off so much sugar, salty food (I love salty and sweet) sweets, and sodas. I went from 8 lumps of sugar and 8 packs of creamer to 2-3 lumps of sugar and 2-3 creamers in my coffee. It was rough. I didn’t know how addicted I was. There are so many ways to cut back, add other choices, use coupons, and to try something new. Yes, my people, try something new. You can still have soul food without it raising your blood pressure and doubling your insulin levels.
These are some things we can somewhat control. Most of us. Not all of us. There are always EXTENUATING circumstances. I can’t do all the things I use to do and I can’t do the things others do. But I can do what I can do. I do have the power of choice. I am in no way at the weight I will be happy with, not what my doctor would be happy with. I had to figure that out, too. There are carrots and celery, ginger shots, and water in my fridge. There is birthday cake ice cream and a Pepperidge Farms lemon cake in the freezer. I rarely buy sodas because I will drink them just because they are there! I don’t have all of the answers. But, I do know things have to change in the minority communities and it starts with conversations and choices.
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)
She said, “You chose a person that is disabled and doesn’t work over me.” As if being disabled and UNABLE to work made me the lesser choice. It didn’t help that he didn’t come to my defense with tenacity, anger, and “pissoffity” (extreme pissed off-ness). But you know what did help? Knowing who I am regardless of my disabilities and the inability to work.
“Life ain’t been no crystal stair” is something Langston Hughes mother would say to him. I truly understand this poem at the age of 44. I look back over my life and it’s been filled with tacks, splinters, torn up boards, and no carpet. I’ve been reaching landins’, turning corners, and going in places where there is no light. In other words it’s been filled with one challenge after another, heartaches and heartbreaks. It’s been one bad break after the other. It’s been filled with PAIN and TEARS. I’ve been sad and lonely. I have been alone in a room full of people and lonely in a relationship. I’ve had bad things happen to me, #metoo and saw a dream die after a hysterectomy. I’ve been made a fool of and made horrible mistakes. I am sure anxiety and depression was here before I had a diagnoses and to mention some childhood drama and trauma. Teased, talked about, and bruised. Diagnosed at 8 with JRA and it made it’s return in 2010 as Rheumatoid Disease and brought Diabetes, Fibromyalgia, Osteoarthritis, and unexplained shortness of breath. Nope. Life ain’t been no crystal stair. And nope, that ain’t all folks.
However, I have raised a beautiful, bright, and intelligent daughter that is now in college. I have written three books. I returned to painting abstract art as a “black woman” and that may seem strange to some of the people in my circle. I have learned how to crochet. I have accepted my role as a spiritual teacher. I have found my authentic self. I keep rising from the ashes. Sometimes I am still standing and sometimes I get the wind knocked out of me, but I am still alive. I still believe in true, real, authentic love even if I never get to have it on this earth because I believe I have had it in another lifetime. I have learn to live fearless even when I am feeling fearful. I have went without so that my daughter could have. I love to give to other people. I love to fight for the underdog. I have traveled with friends and family and there are sunrises and sunsets engraved in my mind forever. It doesn’t really matter what someone says, even if it hurts. Even if it rubs salt in the wounds of dealing with being a different woman than what I use to be. I still know who made me. I still know I am fearfully and wonderfully made. I am not less. I am MORE. In fact I am a better woman because of all that I have survived and I look forward to spending the rest of my life thriving (with or without a man but hopefully with the one that matches my level of love and maturity).
Pretty women wonder where my secret lies.
I’m not cute or built to suit a fashion model’s size
But when I start to tell them,
They think I’m telling lies.
It’s in the reach of my arms
The span of my hips,
The stride of my step,
The curl of my lips.
I’m a woman
I walk into a room
Just as cool as you please,
And to a man,
The fellows stand or
Fall down on their knees.
Then they swarm around me,
A hive of honey bees.
It’s the fire in my eyes,
And the flash of my teeth,
The swing in my waist,
And the joy in my feet.
I’m a woman
Men themselves have wondered
What they see in me.
They try so much
But they can’t touch
My inner mystery.
When I try to show them
They say they still can’t see.
It’s in the arch of my back,
The sun of my smile,
The ride of my breasts,
The grace of my style.
I’m a woman
Now you understand
Just why my head’s not bowed.
I don’t shout or jump about
Or have to talk real loud.
When you see me passing
It ought to make you proud.
It’s in the click of my heels,
The bend of my hair,
the palm of my hand,
The need of my care,
‘Cause I’m a woman
I don’t know if I will master the art of suffering, but I know that I have suffered a lot in this lifetime. My suffering is not to be compared with others. I don’t believe in who suffered more because as I have said my whole life, “We all have our own personal hell(s) to live through.”
Speaking of hell, I had a migraine last night that could be considered and EF4 if it was a tornado. It was a 9 on a scale of 1-10. As I lay on the couch in darkness, a lavender candle lit, I thought to myself, “Why do I have to suffer so much? I have suffered my entire life physically and with matters of the heart. I want this suffering to be over. I deserve more peace, love, and joy the rest of my years.” And then I said to myself, “You can endure this. You can get through this. This pain will not last forever. You just have to wait it out. You’ve done everything you could in the natural and spiritual. Wait it out. Think of things that bring you peace and comfort.” It took seemingly forever, but after a migraine that started with a suddenly stiff neck around 4pm and turned into a full blown migraine around 7pm, after 11pm I could finally sit up without the feeling of severe nausea. I got up from the couch and went to bed.
When I woke up this morning I saw this quote. How true I thought. Even though I get tired of suffering, it is better that I work with the suffering, instead of against it. Working against it only makes it worse. I get upset about the migraine, start to go into why and my heart rate raises. Blood pressure goes up and the pain worsens. I go into panic when what I am doing is not working fast enough. It only makes the pain worse. I let go last night and just endured. I have decided not only to not compare my suffering to others, I have also decided to not accept that I suffer more because I am stronger than others. Hell, I get tired of being strong. I am also weak in my suffering many times in private, but it is my God that is stronger during those times. God sends angels and earthly angels to help me through my sufferings. I am thankful and grateful for them. I may never know why we suffer more than others. I accept that it just is and this is why I cherish the simple things in life as if they were the most valuable because many times those are the only things I can focus on in times of suffering.