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

 

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Have Not…Yet.

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Some people with much more money, a bigger home, power coupled up, degreed line walls, will have an attitude towards you and you have none of those things…yet (maybe you don’t even want any of that to a degree)…Sometimes they will do all they can to STOP your progression. They can’t believe your audacity of HOPE, they can’t believe you even THINK YOU CAN rise up. These people are usually insecure and unhappy somewhere in their own lives. Pray for them. Heap those hot coals over their head (Bible) and keep on pushing. Let God prepare that table for you. It’s harvest time.

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

Liberation Journey Log: I Don’t Apologize for Being A Christian that Reads

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“Only read the Bible and books by other Christians because you don’t want to become “led astray” or “confused.” I remember when I was in high school and one of my classmates was a Muslim. It was in various conversations I discovered there were many levels, simplicities, and complexities to exactly what that meant for him. It was one day in gym, a day where we didn’t have to dress out, when we had this conversation about some differences in our faiths. Two young people, discussing differences, without arguing, but to seek an understanding of “why” we see or believe things that way.

No insults were traded. No belittlement. Disbelief? Yes. Shock? Yes. Ah hah moments? Yes. Thought provoking and respectful. He said he would bring the Holy Koran to school since I had never seen one. I told my mom and she cautioned me as she had been cautioned. He brought it to school. I looked at it. I was like “Wow. Cool.” I mean what did you expect from a teenager. It was like an Indiana Jones moment. I came home and said, “Hey, Mom. Still Christian. Just letting you know.” She seemed to be relieved. I thought it was humorous.

The things is, I had been reading all kinds of books from Astrology to History. I am curious about almost everything and I lived directly behind a library.  It was only natural to seek more information and explore ideas about God outside of my faith. Was I confused? Sure about some things. But, many things only confirmed what I had always thought about God anyways. Thank goodness I read other books, spiritually led to them, taking what is true for me and letting things in the books that were not, go. When you read something, that you are led to, you must learn to EAT the FISH and SPIT out the BONES. You do not have to believe everything in a book. If it aligned itself to my core beliefs, if it aligned itself to my spirit, I was good with it. I never thought about leaving Christ. Yet, I have thought about leaving Christianity in a sense of how it is viewed by those in it and those on the outside looking in. I hate to be constrained in any way!

I read. I read outside of my faith and it has created a freedom in me I can’t explain. It allows me to be respectful to others who do not believe what I believe and it has given me a command to not be in company with those who cannot respect my beliefs. This includes other Christians as well. Who are we in respect to the Creator? We do not know it all. We do not have it all. NONE OF US DO. I have no need to put you in a Heaven or Hell. Though, I do believe there are just somethings that must be accounted for…

So, I don’t apologize for the books I read. God put the quest in me to discover what God means and who God is to me on another level than just what is between 66 books. We don’t have all of that either. How can anyone have all of God? You do not own Spirit.

One thing reading has done is allowed me to appeal to the spirit of a person. I have no qualms about what you believe or not unless it is used to harm others. It has taught me that I don’t have to understand you, to respect you. I don’t have to feel sorry for you because you do not believe what I believe. I don’t have to make you believe what I believe. I don’t have to change you. Heck, I don’t have the power to change you. Only you can change you.

Deep calleth unto the deep. If it hasn’t called you, don’t worry about me.

~Nikki

RA Blog Week Day 4: TGF Hobbies

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Birthing Autumn by Nicole Jackson 

Are hobbies important? You bet! Especially, when it comes to having an illness or disease that can zap the life and joy right out of you IF you allow it to. I don’t know if my hobbies are hobbies, so to speak. I mean since RA has taken a turn for the worse in my life I would like to think what may be considered as hobbies are really my lifelong passions that have been buried underneath the hustle of life and the bustle of a job. Most of my hobbies center around things I wish I would have done a long time ago or pursued.

Hobbies not only occupy your time, but should expand your mind and it should be something you enjoy. When I tend to my blog, one of my hobbies, I enjoy it. When I thrift and put outfits together, I enjoy it. When I find odds and ends, repaint them or repurpose them, I enjoy it. I get a great deal of satisfaction out of my hobbies. The things I don’t consider hobbies are writing (author), painting, crocheting and sewing. These things are more than hobbies to me. I view them as possible way to establish a new life since I have been left with me the remnants of my old life. Life, before RA. The core of who I am is still there. And to be honest, if RA had never came along and blew my old life out of the water, who knows when these gifts would have been reborn.

~Nikki

 

 

RA BLOG WEEK DAY 3: PARTNERS

Partners  – Where would we be without our partners? They are often not just partners but caregivers. Tell your partner’s story. And if you do not have a partner what will your ideal partner be like, or do you even want one?

Partners. Well, from what I have seen in my lifetime and heard, it is very important if you are going to have a significant other or spouse, it certainly makes a major impact on your quality of life if you have a good person that is will to be by your side. Sickness, temporary or permanent will surely bring out the worse in some and I have seen divorces and just mean treatment. With those things in mind, I have decided to choose carefully because I know RA is not going anywhere and I would rather be with one that is compassionate and patient. These are just two of the qualities along with others I look for in a person.

As RA resurfaced in my life five years ago, I was devastated and really down about the possibility of being in a relationship decrease all the more. I believe quite a few singles who have RA or any other disease feels this way. I didn’t want to tell anyone I dated I had RA. I had to figure out if you should say it sooner rather than later. I figured it was best to say something depending on if the getting to know each other phase was going well. If not, then it was no need to go into detail. And also, details needed to come in phases, as necessary, and in small doses. They don’t need to know everything in an hour. That is overwhelming! Here a little there a little.

Yes, I want a relationship and then marriage. But, I do not want someone that will add tremendous stress to my life.

~Nikki