Tag: juvenile rheumatoid arthritis

Sunday Morning Coffee Musings: The Scenic Route to Becoming Fit

FROM MY SPIRIT
Photo by Nicole Jackson 2023

I have lost 14lbs since last March and I would like it to be 16lbs by March 2023. It has truly been a struggle as some of you know from my blogs. Gifted with the challenge of diabetes after I was diagnosed with Rheumatoid Arthritis Disease, a few years ago I lost 12lbs after taking a Nutrition class from a CERTIFIED nutrionist in diabetes and after the doctor added a new med. I was not really working out consistently.

I have chosen the scenic route to weight loss and being fit. I call it the scenic route as it’s a long, slow way to lose weight. It’s a journey I have chosen to see as exciting as I discover new meals and recipes. I see it as a new way of making better choices. I see it as a reward for when I work out and I don’t really want to. Having Rheumatoid Disease and Fibromyalgia makes it difficult but, that is no longer my excuse for NOT moving my body. Because of the disease of Rheumatoid and the mystery of fibromyalgia, I am not supposed to do high impact exercise. But that doesn’t mean I cannot exercise at all. I have chosen the old-fashioned way of a healthier diet and exercise. A lifestyle change.

I have no huge goal. Therefore, I am not hugely disappointed if I don’t meet it. I am not doing this for an event or anyone. I am doing this for me. I’m not trying to be the size I was before I had my daughter 22 years ago but, if it happens, great! If I fall off or make the wrong choices I am not too hard on myself. I get back on track and keep moving forward. I just want to be fit. Less belly. I want to do all I can in my power to age well.

~Nikki

Sunday Morning Coffee Musing: Drive.

Creative Confetti, Fashion Confetti, FROM MY SPIRIT, RAFibroOAEtc., Uncategorized, Woman Power Up

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

RAFibroOAEtc., Uncategorized

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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 3: RA/RD Blog: Disability

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

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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

RA BLOG: Bad Blood

RAFibroOAEtc.

It started as a good day yesterday. Even though, it was raining cats and dogs. I managed to take care of a few errands. I started to feel my energy wann around 3:30 P.M. I was going to go home and take a nap before a birthday dinner of a friend. Well, when I got up I felt my shoulder ache. No time for this. I took a shower and asked my daughter to put some cream on it (it’s like a icy hot) because I did not want to take pain medication. It wasn’t 5 minutes after she put it on I began to itch like crazy…all over my back and face. I knew I was having an allergic reaction and it was possibly setting off an itching flare (unexplained undiagnosed flare the doctors can’t determine why or cause). So, I took my last Benadryl and a Fantominide cocktail which calms itching fast (learned that from a nurse in the E.R. when it happened the first time). I had to cancel my plans to go out…so much for margaritas!!! But then around 11:00 P.M. I started itching again…and I had to throw on clothes, make a mad dash to the grocery in rain to get more Benadryl because I was out! My parents are aging, my brother was at work, and other siblings are older than I am blah blah blah…I was on my own. I never want to bother anyone i.e. friends because they live too far and even if they live close…they don’t seem as if they want to be bothered if that makes sense. I’d much rather you bother me, than I bother you.

I made it home. Texted family I was ok. I woke up this morning, but could not get out of bed. Talk to Mom, didn’t tell her I couldn’t get up (didn’t want to worry her=she’ll call everybody-everybody will call me-I don’t want to talk). I got up to shower and discovered my shoulder still hurts, including, hip and knee. I make it out the shower, to the kitchen, put breakfast on at 10:15 and soon realize, I can’t stand long so I push it and sit. And write to you…

I spent money for a very famous fashion show today because fashion is my first love. I did not have money for the all day events and I don’t think I would have lasted anyway. But, to now think I may not even be able to make it to this world renown fashion show is gut wrenching. It is this very moment, well, all night really, I wonder if I can do it. If I can still pursue fashion with this evil disease and at my age of 42. I think about giving up. I think of all the problems that would come with it. I think…if only I was not deterred at a young age to NOT pursue fashion, I would already be doing it and perhaps well established. I know I have the gift. I may not know #@$% else about myself, but I do know that. That is the one thing I have always been confident in and comfortable with.

Getting dressed, doing my natural hair, painting my nails, wearing heels, forcing myself to walk straight, walking a long distance…

For the first time I contemplate if I am in over my head trying to reach for a dream that will not die…

~Nikki

 

RA BLOG Week: RA/Rheumatoid Disease and Mental Health

RAFibroOAEtc., Uncategorized

a-lot-on-your-mind
A Lot on Your Mind by Evan Sheline

If you get a cold or the flu, it’s okay because in a few days or a week, you will return to your healthy self. In those days, it will be physically and mentally draining. After all, no one enjoys being sick even if it for a week. Imagine the nightmare of becoming ill with something you can not get rid of. Imagine the pain comes in all variables to be described as nagging aches to excruciating to kill me now. You can’t do all of the things you use to do and what you can do has to be modified. How will you continue to survive and thrive in this world? How will you continue to provide for your family? Will you be able to do all of the things you planned? Will people think you are lazy or have given up if you can no longer work? What about your dreams? What about your goals? What is this new diagnosis? And another one and another one as a result of Rheumatoid Arthritis Disease. What the hell is happening here? Friendships and relationships change. Marriages change. You’re too young for this. You were thinking about enjoying your retirement…without pain. What do we do now? Why me? I am sick of hurting. Can I have a day of no pain???

The matters of the universe swirl in your head and the weight of the world is your shoulders. The impact of RA on your mental health can be devastating. It was for someone like me who was already an emotional human being who has lived through some very tragic moments. Now what? Another thing to hide. Another thing to deal with privately. I don’t want people to know I am depressed. I don’t want people to know I am anxious. I don’t want people to know I stand on the ledge of suicide. They will label me weak. And you don’t want to be labeled weak in the African American community. Or crazy. We associate mental health issues such as depression and anxiety as “crazy.” Ah, the stigma.

What do I do? How do I deal with the mental impact of RA? I try to take it day by day. I put on my brave face and walked boldly into the psychiatrist’s office, the one that has a brown face like me, and I said “I am sinking. Drowning in this sea of emotions and pain. Help me.” And then we went to work. Because seeing a therapist is WORK. A good therapist, psychologist, or psychiatrist, knows the tools you need to cope with life’s tragedies. It does not, DOES NOT MEAN YOU ARE WEAK, it means you are smart to seek help. And those who say you are “weak” or “crazy’ are the ones who are in need of help and don’t even know it. I use the tools my therapist gives me. Daily.

I practice yoga to help mind to focus on what is right in front of me.  It helps me to control my breathing. It helps me to control my thoughts. It helps to keep me in the now.

Meditation. Get you some. It helps me to see into myself. I can assess myself. I can create my future. I can pinpoint in my body my issues.

Prayer. It is my lifeline to my Source. It is how I talk to someone, when I can’t talk to anyone.

A personal relationship with the Creator (yes Source, yes God and not the God of this or that religion, but GOD). A deep, committed relationship, a bond, a sealed union. This relationship gives me strength. It empowers me. It serves me. It is my refuge. It is my stronghold. It is a friendship, a parental relationship, that has stood the test of time with unconditional love…mostly on God’s end. God has never wavered in love for me. Even as I tossed and rolled like a raging sea.

All of these things keep me grounded and honestly, above the ground.

~Nikki

#rablogweek2017

rabadge2017

RA BLOG: Just Not Tonight

RAFibroOAEtc., Uncategorized

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Sciatica nerve, joint pain, fibromyalgia and pinky finger falling asleep along the side of hand up to the elbow, makes for a “hades” of a night. I had to get up and get an ice pack for my back. I did get up and I made it to church. There were some hard hitting pains there, too and in RA Warrior fashion I answered “I’m fine.” The pain for me has been on off today but now it seems like I am going to have a fibro and RA flare. They both move around the body. So, as I prepare to wrap up my night and prepare for a bumpy ride, I hope you know that in those nights, midnights, early mornings, you are not alone in your suffering. Some warrior, of some illness is suffering, too. Someone is praying for the subsiding of pain, too. I pray for them, too.-Nikki

Does Weather Affect RAD(Rheumatoid Arthritis Dis-ease) and Fibromyalgia?

RAFibroOAEtc., Uncategorized

 

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The hurricane is influencing the weather here in my city. I can feel it and it doesn’t feel good at all. I really need my hands today. You can’t tell me weather doesn’t affect joints or muscle. I don’t understand after all the research and patient information, discussions about humidity and barometric pressure, why doctors have yet to admit this and state it as fact. What more evidence do you need? It may not affect everyone, but it is a fact for many of us.

Yesterday, I took every unnecessary item out of my purse and I still could not put my purse on my shoulders very long. Switching it back and forth I felt like throwing it across the store. But, that may get the attention of security and brand me a “crazy lady.” I don’t want to be the talk at the table of employees of my local grocery store.

As I pray and donate to the victims in Houston, I put my pain in prospective. I think of all of the autoimmune warriors there who are experiencing a stress I pray I never have to feel. And today we pray for New Orleans. We do not want it to be Deja Vu. As for me and my unpredictable, growing pain in my hands, wrists, forearms, feet, and ankles today, I sit aside many things on my “to do” list and whatever I accomplish today will be enough.

~Nikki

RA BLOG: Enthesopathy/Enthesitis

RAFibroOAEtc., Uncategorized

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It started in January and it has not left me yet. I thought it was “just” joint pain from rheumatoid arthritis in the left hip giving me a hard time and keeping me tossing and turning at night. Surely, it will go away. It didn’t and I tried prednisone because I thought I was having a flare. That didn’t do much. I tried naproxen and it didn’t do much either. It got really bad and then during the day, instead of going away it just dulled and would flare at time. I called my rheumy.

“Come in for a shot!” Oh no! I didn’t want that! But as I went the next day, he examined me first and said, “No. You don’t need a shot. You have an inflamed ligament. Let’s try physical therapy. Once in physical therapy, I learned the name of this condition: enthesopathy. The inflammation of it is enthesitis. I have that.

“In medicine, an enthesopathy refers to a disorder involving the attachment of a tendon or ligament to a bone. This site of attachment is known as the entheses. If the condition is known to be inflammatory, it can more precisely be called an enthesitis.”

Last night was awful. It had been nagging a few days. The new pain medicine did nothing. I got some relief with the heating pad. My concern is that this could be a permanent condition and there could be damage as I researched credible sites that said this could be possible for those with an autoimmune disease.

As I try not to worry about it much, and face these things head on, it is very difficult when RA seems to present an obstacle course on top of the obstacle of life.

~Nikki

RA BLOG: Limiting Pity Parties

RAFibroOAEtc., Uncategorized

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