Disability and Reality Head on Collisions

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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

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

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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

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

Keep Out. Only God & the Experienced Allowed.

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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?

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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.

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~Nikki

 

RA BLOG: A Blow to the Jaw

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I remember a dream I had before Rheumatoid Disease returned to my life. It was a dream about losing my teeth as I was floating down a tunnel. I woke up horrified and started to pray. I thought it may be related to wisdom…I was wrong.

I’ve had a few cavities in my lifetime but, I have not had as nearly as many as I have had since RA. In fact I have had two teeth crumble and cavities in my wisdom teeth. They had to be removed yesterday and let’s just say it went down hill.

I have a great dentist with an amazing staff. Upon extraction both teeth split. The dentist had to cut around the gum also to loosen the teeth. I had to have gas to help keep me calm since I have developed anxiety (or finally got a diagnosis). It was still a nerve racking ordeal. And I had a very difficult time getting the socket to clot. I had to sleep in an upright position and that was impossible to be comfortable with RA, Bursitis in the hip and fibromyalgia. I had insomnia. Pillows were sliding and my mind was all over the place. Eventually, it clotted in the wee hours of the morning. I was up changing gauze and using tea bags. ROUGH.

I am 42 and I am ashamed to open my mouth as a speaker, a friend, a mother, a family member, and potential date. I would love to have implants, and I plan to, but at $4400 out of pocket this is not possible. So, what’s my next option? A partial. It’s obtainable. And if I wait a year insurance will pay some of it. I am not replacing the wisdom teeth of course, but the other two that crumble. Twice I have experienced TMJ.

This blog is an open and honest blog. So, here it is: I think I am pretty. I love my smile and now I don’t love to smile. I am insecure about my appearance and as a single girl I feel as if dating just got even more challenging. Even if I do get the partial, how will the person I meet feel about me not having all of my teeth? They may think it’s because I didn’t take care of my teeth. I did. I flossed. I brushed. I rinsed. What else can you do? I am not even that big of a sugar addict. Though I do have my moments.

Some say there is a link to RA and gum disease, dry mouth, or Sojourns disease and some say it is not. My dentist doesn’t think it’s RA but, it could be the medication that causes dry mouth and fosters the progression of cavities. I just found out that I do have dry eyes and my Rheumy prescribed over the counter dry eye drops. Sigh…I feel that I am falling apart at 42. And yet, I still have hope that all will work out for my good.

~Nikki

 

 

RA BLOG: Bad Blood

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

 

Sunday Morning Coffee Musing: The Good Daughter

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Growing up both of my parents were pretty healthy parents. I remember an occasional flu or a minor surgery. I can’t say I know what it is like to have to “deal” with an ill parent at a young age. I don’t know for sure how much it affects the child later on in life but, I am certain it makes a world of difference what the illness is and how the parent themselves handles the illness or disease. If the parent is any parent at all, they naturally carry a bit of guilt for being sick.

My daughter is 16 and it was seven years ago when Rheumatoid Arthritis Disease came out of remission and imploded into our lives. She was 9. I pushed on five years after that working, being a mom (because well you can’t stop doing that) and my daughter has always been the most caring and concerned child through this ordeal. And I have tried my best to make sure the unpredictability of RA doesn’t take a toll on her childhood as much as it takes a toll on my body and life.

When RA first resurfaced, we didn’t know what it was. I remember waking up one morning with the Holy Telit across the foot of my bed laid there by my daughter. I remember when I had to have surgery twice, she was ready to do her part. Through my crappy attitude at times and unbearable mood swings, she has learned to either let me know or just stay out the way. I have often, come back to apologize and try to make sure it doesn’t happen too often because I don’t believe you can use your pain as an excuse to be mean to others! But, it does happen unintentionally sometimes. You have to be the type of person that is reflective of self and responsible for your behavior. That takes deep commitment to being the best you, you can be and a whole lot of Jesus, God, Holy Spirit, Creator, etc in my case.

Yesterday, she took care of her mother. It was almost like she was prepared because she knew I had a class where I would have to use my hands and sit for some time. I didn’t ask her to do anything. She just stepped right in. I have to say, I have been blessed with a good daughter. I hope I am being the good mom. I hope I have been the good mom before RA came into our lives.

~Nikki