Tag: rheumatoid arthritis blog

Sunday Morning Coffee Musings: Wondering Why, Longing for Normal

FROM MY SPIRIT, Sunday Morning Coffee Musings

Respect your body when it’s asking for a break. Respect your mind when it’s seeking rest. Honor yourself when you need a moment for yourself. -unknown

GM! The morning after a day of bone crushing pain can be odd. Thanks to prayer and prednisone you physically feel better but, mentally and emotionally, you’re not quite together. I feel deep compassion and empathy for those that suffer from chronic pain or chronic illnesses. Sometimes all I can do is wonder why it must be this way. I enjoyed those years I was in remission from rheumatoid arthritis disease and the days I’d never heard of fibromyalgia. On the bright side for me, at least it wasn’t ill when my daughter was an infant. Also, if I would have known the future, I would have followed ALL of my dreams full speed ahead.

But we don’t have the luxury of knowing the future and I am sure that would not always be a good thing. We’d live in fear and sorrow or dread. With that being said, it’s like how depression and anxiety works. I get so tired of hurting it makes me depressed about the future at times. I get so worried about how the future will turn out at times; I get anxious about it. When the pain is severe as it was yesterday, the only thing I yearn for is to just have a normal life. I know what normal was like before Rheumatoid Disease and Fibromyalgia. I could be tired without pain.

~Nikki

Sunday Morning Coffee Musings: What Can You Do?

FROM MY SPIRIT, Uncategorized

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!

~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 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

 

 

Disability and Reality Head on Collisions

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized, Woman Power Up

67091b18cb34f7e8746fb8415126fb29

If you have been following my blog, then you know I am real, honest, and sometimes raw about what I think and how I feel. I am not here for the shock value, I am here because I love people that are honest about their thoughts, feelings, etc. Honest, not rude or mean or nasty. Just the plain old truth. So let’s dive in.

I hate being disabled, but I am grateful that I won my case. I hated my last job, but I was grateful that I had one and it could provide some income. I wasn’t making much and that job was killing me on every level. Yesterday early in the evening I thought I was having some sort of breakdown. I was going down slowly and then boom! I was falling down a dark hole that seem to never end. I reached out for help to a friend that wasn’t available. I reached out to a professional associate, she answered and provided a rope to pull me back to ground. I realized AGAIN yesterday, just how being disabled can restrict, constrict, and confine you financially. It can halt your endeavors. It makes me angry. It makes me sad. It makes me fell worthless. It makes me irrational. It brings up things from the past and shoves them in your face. Sometimes, down your throat. I felt like I could not breathe yesterday. It was anxiety mounting up to a panic attack. And depression was hovering around like a drone.

Before this episode, I had an encounter with a relative. Then I discovered just how limited I was  because of my disability with an endeavor I was trying to start up with a friend. And there came these waves of tears in my eyes that I fought back. By the time I talked to my professional associate, I told her 1st of all, I am crying. Secondly, I am ashamed that I am crying. Crying in my childhood was often made fun of or pointed out by my mother. “She’s so sensitive. She will cry if you look at her.” I thought something was wrong with crying. I also didn’t think it was funny. So crying to me can sometimes bring up a need to apologize for crying. In essence, apologize for being sensitive and weak (according to society, some friends, and in relationships). I do know a good cry is cleansing.

Rules and regulations for disability are necessary. They keep most people from getting over on the system. However, for those of us that wish to do things to help ourselves, it’s often a challenge to figure out exactly what we can do. It’s also a shock sometimes to find out you can’t do certain things and therefore you can’t reap the benefits or joys of those things.

This morning my ground is shaky. But, I am still here. I am still fighting and coping with my thoughts and emotions. This is REAL life. This is a MOMENT that I have to work through. I am fragile in this state and I know I have to protect my mind.

“Weeping may endure for a night, but joy does come in the morning,” -Bible

I am really ready for morning.

~Nikki

Sunday Morning Coffee Musing: Women Doing the Most to Our Own Detriment

Creative Confetti, FROM MY SPIRIT, Memphis, Uncategorized, Woman Power Up

c8795fe6e7a10efc354d670c593892fc

I had a great, terrible, struggling, successful day yesterday. Sound familiar? I hope not! My artwork was on display and I sold two more pieces. Sold my first last week. In case you are a new reader, I have Rheumatoid Arthritis Disease, Fibromyalgia and some other things. Well, I  am also very stubborn and I have a tendency to take on too much not considering y health. In the past, I never had to consider it. Old habits die hard and some never die.

Anyhow, at the end of the fabulous art show, I was hit with a MEGA migraine. My neck was hurting as it was very cold in the building. I had my compression gloves on the entire time (these help with my joints and fibromyalgia). Three weeks of crocheting, painting, driving to Nashville for a fall break with my daughter for two nights, and back home to get ready for the art show…you see, this is me being defiant. So, when hit with the migraine, I continued to pack and load. I heard the Spirit speak and say, “Get help.” But, I didn’t want any of the people there that I didn’t know to help me. I made two trips and I got to the car and well, nausea was for a reason. I got in the car and called one of my brothers. He came. He loaded the car, insisted on following me home, and insisted he unload the art. He also gave me some encouragement. I told him I get tired of being strong and I was sorry I had to call him out in the chilly weather and rain. “Sorry? We are family. That’s what we are here for in times like this.”

After he left, he sent a scripture, “Cast your cares on the Lord, and he shall sustain thee: he shall never suffer the righteous to be moved.” Psalms 55:22 I needed that. And you know what else I needed? I needed everything that happened yesterday, how it happened, and when it happened for multiple reasons. Plenty of lessons in yesterday as well as life nuggets.

  • Women (and men) that are too prideful to ask for help suffer unnecessarily all to prove we don’t need anyone’s help, or the helpers don’t need help, or whatever it is we are trying to prove or image we are trying to uphold
  • Some of us are like this because we have been let down so much, talked about so much for needing help
  • We will override a gut feeling, the Holy Spirit, and voices of reasons to do it all on our own and then damn near die and some have died
  • I constantly have to remind myself to ask for help, it’s okay to ask for help, it’s not righteous to always be the helper and it’s not weak to need…anything including help
  • No man or woman is an island. Even if they think they are. They are disillusioned at best.
  • Family is good to have. Friends are family, too.
  • I could have strangers. I am a stranger that will help anyone in need.
  • I shouldn’t be so hard headed but sometimes I get tired of being bound by RD, Fibro, etc. etc. and etc. And I just go mad lol

So, I recover today not only from last night but for the last three weeks. Breathe, meditate, medicate, elevate, easy going do it easy, and realign with the universe.

~Nikki

44065339_10157888125183266_6710877487942860800_n

 

 

Lola of the Universe Sold
Bloodgood’s Blessing Sold

These are the two paintings that sold. Lola of the Universe and Bloodgood’s Blessing.

Keep Out. Only God & the Experienced Allowed.

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

ce37d8e71cb383beb7220a3c76d27555

It’s down right ugly the mood I am in. This war in my head and heart after my second hearing this year only to have the judge subpoena more records and a test to prove worsening conditions. I thought we had what he wanted. I thought we had enough. My anxiety was already through the roof and I’d had a panic attack before I even arrived this morning. I thought it was going to be over today. Needless to say, I bolted out of there and cried like I needed to in the car. I am so very tired. Over three years of struggling to survive and to stay sane.

I trusted God as I have throughout this process. It seems as if we were nearing the end. I feel like the rug was pulled away from under me. I feel heavily disappointed. Angry. Pissed. Exhausted. But, not defeated. I feel as I want to pull away from the rest of the world and at the same time I wish someone would console me. But, I don’t want them to see me crying. You know, crying in this world is a sign of weakness to most (NOT ME) and it makes people uncomfortable (NOT ME). In my not so humble but, honest opinion the only reason people feel that way is because they feel weak themselves when they cry and the are in fact uncomfortable with their own feelings.

So, here I am. Weary. Wounded and Sad. But unwilling to stop trusting God for a favorable outcome. I am confused. I don’t know why all of this has happened to me or is happening. I do know I did nothing wrong. It was not because of sin (rolls eyes). It just is a part of my journey. My story. So, as I try to figure out how to keep the lights on, pay for a cavity fill in my insurance doesn’t cover, pay my rent, pay other bills, and STILL be pleasant to others, I have to feel what I am feeling. I have to go through the thicket that has thorns. I remember the sticker bush at parents house and getting knocked into it playing or trying to hide and having to squeeze through it and another bush. No matter how you tried to get around or through it you were scratched up. There is just no way around pain sometimes. Only through it.

~Nikki

 

Can We Be Friends If You Can’t Understand Rheumatoid Disease is a DIS-EASE?

FROM MY SPIRIT, RAFibroOAEtc., Relationship Energy, Uncategorized

flat,800x800,075,t.u1

When Rheumatoid Arthritis was in remission, yes, it is a disease that can go into remission, I was living it up! Going going gone! A whirlwind of endless fun and good times. My energy was unbelievable. People would say “You are always on the go” or “You walk by so fast it’s like a blur!” Working 10 hour days 5 days a week and then getting all the overtime I wanted. At one job, working 12 hour days and filling in days and nights. It was nothing. I would rest later. I was a mom that was full of energy and I thank God I had that time when my daughter was very small and RA didn’t come until here tween years. Yet, I often feel guilty that we aren’t out and about as much as I would like and often I get tired or hurt before a day of fun is over.

I’m okay with who I am and how I have to operate to preserve my body and my peace of mind. I have found that others, strangers, friends and family are not. I have pretty much embraced that RA has returned and it brought along some of it’s friends; fibromyalgia, osteoarthritis, and diabetes to ensure my demise. Epic fail indeed! I am still alive, well, and kicking. Albeit, in a different and new way that I am getting use to.

If I go home because I can’t go hard is that a strike against me? Am I the party pooper? If I need a break, a nap, or choose to chill when we are on vacation, am I boring? How so? What you eat doesn’t make me poop! So what I do shouldn’t make you constipated. What people like me want is your understanding, not your criticism. We don’t really want your sympathy, but your empathy and really I don’t need that. I prefer you to understand and keep the party going without me. True, I am the life of the party (haaaaaaa!!!!!) when I am in party and wilding out mode but, in reality the party goes on. So you don’t have to talk about us behind our backs and you can keep the rolling of the eyes, too. If you can’t adapt to the new me and yet I am the one carrying the load and I have adjusted my new crown, then I don’t think we can be friends.

Do what I do. Enjoy those moments when I am riding high. Cutting up and laughing. Enjoy those times that I can pull an all niter, when I am on the floor dancing (something I love to do) and I am hosting a party on my feet making sure you enjoy your night. Note, I will have to pay dearly for the physical things I do later and for how long and how bad is anyone’s guess. It’s a sacrifice willingly made. Google Rheumatoid Arthritis Disease, Fibromyalgia, etc.  to understand what your friend or person you love is going through and HOW it IMPACTS their life. Heck, (really wanted to say hell), talk to them and LISTEN. It impacts everyone differently.

In all your gathering of information, cures, judgments, undocumented medical advice and unsolicited advice, get an understanding by caring enough to understand the needs of a person you call a friend or family member. Know that I am always grateful and appreciative of natural remedies, exercises to help me, or even friends that call to tell me about a medication. I know that they are thinking about me.

get-understanding

~Nikki