Category: RAFibroOAEtc.

Sunday Morning Coffee Musings: Housewarming

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

It finally happened. I had a housewarming for family and family-friends. And it was GREAT. We had a really good time fellowshipping with one another. Most of my immediate family is vaccinated and if not they have had their first shot.

It took me two weeks to prepare for one day because of physical limitations. Really, I started to prepare three weeks in advance. The last two days were brutal on my body and I had a few days along those weeks that were bad days and many sleep issues at night. However, I persevered. I also had help from my brothers, my daughter, and parents. I am grateful for that.

Today, I begin the process of recovery. It takes about a week and sometimes two weeks to recoup from an event like yesterday. Today, I feel like I have been hit by a ton of bricks. My body is exhausted. I am fatigued. I have a huge amount of pain and soreness. So, I have cancelled all plans for this week. I only have one goal, each day, for the next seven days that require my physical energy. I am also not taking any phone calls or dealing with any negative energy. It’s just not happening this week. No extra tasks for anyone else. This is the epitome of self care for those with autoimmune diseases. We must heed the lessons learned and the good advice given to us by others in order to preserve and improve our health.

Take Care!

~Nikki

Brain Fog Leads to Cloudy with No Chance of Meatballs

FROM MY SPIRIT, RAFibroOAEtc.

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.

~Nikki

Sunday Morning Coffee Musings: Mastering Anxiety. How I Survived a MRI

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

 

IMG_0239
Photo from Paris Trip

If you have ever had a MRI then you know how narrow and claustrophobic the huge machine can be. I didn’t have anyone to drive me so I could not take a sedative. But I really needed this testing done and I knew I would have to go all the way into the machine for almost an hour.

I didn’t sleep with my cpap machine on that night in the hopes that I would be drowsy enough to dose off once in the machine. Well, that helped. Once I was in the machine I quickly closed my eyes. I could feel my arms against the cold machine and I knew my face was only inches from this confined capsule. My first thoughts: “What if I get stuck? What if they can’t get me out because the table that I am malfunctions?” This may seem funny now, or to you, but to a person that has anxiety it is a very serious matter at the time. No matter how irrational it is to you. This is also where things go wrong with those who “don’t understand it” and the religious sector. This is the “Oh that’s sounds ridiculous. Now you’re talking crazy. Just pray. Think Positive.”

Mind you I am still learning how to deal with my anxiety. It hasn’t been long in my opinion since the diagnosis and when I look back over my life, if I only would have known that this is what was happening to me, I think I would have been so much better off in dealing with life. Instead I was labeled, emotional, a cry baby, weak, dramatic, and while I am proudly emotional now, and definitely can be dramatic (Hey, it’s part of my zodiac and artist DNA!) , it did not help me to understand what was happening. I suppose the double barrel is, “Black people don’t need therapy and if you are a Christian, you just pray about it. Use your faith.”

Back to the story. It is at that junction, of what ifs that I take deep deep yoga breaths until my heart rate starts to slow down. I focus on the breath. Then I address the thoughts. If I get stuck in here the table moves manually. What if the table doesn’t move manually? How do you know that? Did you ask? You should have asked. If it doesn’t, I can scoot out and they will help me. Whew, problem solved. Thank God I have been semi working on my weight. I do actually chuckle here.

I was aching that morning from joint pain, fibromyalgia, and muscle pain. I didn’t take any pain medication. I decided to first pray in the MRI tunnel. I prayed about everything and then I prayed for people, the Covid 19 plague (is what I call it). I prayed and gave thanks about my destiny, calling, lack of a love life, etc. I cast my cares and concerns on God. Then I meditated. I was at the beach. I envisioned my life, the way I wanted to see it. Then the lady interrupted me saying, “Okay. First part is over. You are doing well. Now, the table is going to move you all the way into the machine.” Me: “Okay.” Heck, I thought I was all the way in!

Part two: I finished meditating, never opening my eyes. I thought now what? I guess I will think about what I will do when “outside opens back up” and that means, when quarantine is over. I did that and then I did some affirmations. I know I dosed off several times during the hour I was in there.

I was so happy to hear the lady say, “That’s it! You did great for someone who is claustrophobic and has anxiety.” I told her, “I am surprised. In the past, when faced with tests like this or similar, I don’t always fair so well. I will take this victory. I did a lot of work in that machine to stay still and not panic.”  I just started telling myself days before the appointment that I could do it. I had to do it. I need to know what is causing constant pain in my hips, legs, shoulder. I need to know.

TRUTH: I didn’t just do a lot of work in that machine. I have been doing the work all along. I have been practicing meditation. I have been practicing the techniques from therapy. I have always prayed, but I have learned and I am learning to improve my prayer life. I have been listening to more positive videos, reading more positive things. I mean over years on the prayer and positive things. I can tell you that I have dropped off, “failed” techniques, just didn’t use them at all. It works more often than it doesn’t. It is because we are human. It is because we are faced with some things we have never been faced with and scales we have never dealt with. Yet, we get back on path. Crawling or walking. We get back on with life.

So let us, me, rival in this huge victory. Because last night, I had a battle with anxiety and it wasn’t pretty at all. Yet, I rise to focus on this victory from Thursday. One battle at a time, but I felt like Thursday’s MRI was a battle for the history books. It was like the movie 300! and I was fighting on that thing in the middle. I won. 🙂

~Nikki

Valentine’s Night (I Think We Are Going To Need Back Up)

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

IMG_3046-how-to-make-chocolate-covered-strawberries-recipe

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.

This…is PLAN B.

20ce523bde591ff2329fb9ead4b1fe46

~Nikki

ee27fa96251f738f4918d5ce321cdd86

Sunday Morning Coffee Musings: Anxiety; Time & Space

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

IMG_20190130_082741_423

What’s the last thing you need when you’re coming down from a big disappointment? You guessed it.  Another disappointment. Granted it was minor in the bigger scheme of things, but I also look at the fact that I am a highly sensitive person that feels things on levels many do not. I also factor in that it takes me longer to “be okay” about certain things, to process it all. Even small things.

I first decided that I was not upset, but that I was disappointed. The infraction appeared to be unintentional. There’s this quote that says “Accept the fact that some people didn’t intend to let you down. Their best is just less than you expected.” -Thema Davis. I think the person could have handled it better and I sense there is something else going on. When this happened I was really disturbed and plagued with all sorts of negative thoughts about myself, life, and this of course spurred anxious thoughts. I went to bed after meditating only to be awaken by noise in the attic (A squirrel. I guess.) Yesterday was tough, a beast to deal with. I cleaned, washed, cooked, but all day was a battle of the mind and mood swings. I was glad my daughter was invited to a party later in the evening and spent the night with friends. This is the holiday season, a joyous time, and I was growing weary from trying to “be okay.”

I can’t rush my feelings to get to the I am okay segment. But what I can do is do everything I can to assist it to an at peace state. Challenge or question the thoughts in my mind. Are the thoughts true? If they are then what is the solution, action, to change them? Maybe the action is to “not do that again.” Maybe the solution is to remove the person from life. Maybe, give the person the benefit of the doubt, extend grace and mercy. Maybe the best thing to do if affirmations aren’t working, scripture isn’t working, meditation isn’t working, etc. is to SHOW MYSELF COMPASSION AND PATIENCE. DING DING DING.

Compassion and patience is what I need to get to the other side of this. It sounds like this: “My god Nicole. It’s no wonder you’re taking this so hard. Look at what happened to you this year. That was tough to deal with and you’re not even quite done digesting that! It’s like chewing with a mouth full of food and squeezing one more piece in. You’re choking. Sip some water. Breathe. Let that little bit go down. I think it went down the wrong way, but it’s okay. You’re still alive. The hurt will lessen. You know you are extra sensitive with all of that creativity pumping through your veins. So, give yourself some time to be okay. You need space to heal and deal.”

It looks like: Getting up. Getting dressed. Eating. Deciding what things on the list of the day are the simplest to do. It looks like temporary distractions such as TV or Music. It looks like sleep. It looks like positive YouTube videos, meditation apps, affirmations, and maybe chatting with friends. It looks like crying because that is release. It looks like forcing myself to church or an event or not forcing myself.

Time and Space.

~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

69867494_10158830262088266_1455388881301012480_n

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

FInal-2019-PNG-badge-marked-RD-nto-RA

IMG_20181227_162721_431

 

DAY 4: RA/RD: Community

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

 

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

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

20181106_134136

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

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

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