Day 5: RA/RD Blog: Buddy

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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 4: RA/RD: Community

 

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

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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

Day 2:RA/RD Blog Week ADJUSTING

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

 

Day 1: RA/RD BLOG WEEK: DEALING

Dealing – How do other diagnoses impact your RD and its treatment?

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I was on my second and current Rheumatologist when I found out my previous Rheumy had diagnosed me with fibromyalgia. Imagine my surprise! I developed diabetes AFTER my diagnosis of the RETURN of Rheumatoid Arthritis DISEASE. I was first diagnosed at 8 years old and it went into remission after middle school and returned when I was 35. In the process of a surgery for Halladux Rigidus (Nodule develops on the big toe joint and causes PAIN, erosion, etc.) they doc said “Oh I removed the build up and I could see the arthritis and OSTEOARTHRITIS.” I also found out this year I have osteoarthritis in the joints of my fingers.

How do these things impact my RD? The fibromyalgia and RD was hard to differentiate in the beginning. I would have muscle pain and joint pain and I didn’t know if I had muscle pain because of the joint pain or if I had joint pain because of the muscle pain. It turns out that fibromyalgia, or any other thing I have can cause my RD to flare or cause me pain. My body is so confused about what is pain, when the pain requires an attack or not, how to receive pain and process pain, it doesn’t know what to do and when to do it.

It has made treatment very challenging to make sure some meds do not interfere with others. Some meds are used for the same thing. Also, when one thing is out of whack, like diabetes, it causes neuropathy and then fibromyalgia can kick in. Also, if I am dealing with anxiety or depression it can cause flares with fibromyalgia and RD. I have had both to flare at the same time and it is like being in a blizzard or a natural disaster of the body.

What makes the difference for me, or how I deal, is to differentiate between fibro and RD and I did that by learning (reading and researching from CREDIBLE sources) about each one. I treat fibro with pain cream, ice packs or hemp oil massage. I use pain medication or steroids for RD pain. I address diabetes by managing it. I address anxiety and depression by seeing a therapist and applying the skills taught to me by him that helps me to cope. I am spiritual and that helps SO MUCH. I meditate. I pray. I take pain meds for joint pains. I take my meds regularly ( I was not doing this at first because I hate pills but now I even take an injection I give myself). I put my CPAP on at night to help me to rest and if I need sleep meds I take them. REST is important in helping to prevent flares, pain and it’s important to rest to recover from flares.

It’s “alot” I know, but it is my life and I believe to approach it from a realistic and faith-based perspective gives me the balance I need to stay afloat.

~Nikki

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In rheumatoid arthritis, the body’s immune system attacks its own tissue, including joints. In severe cases, it attacks internal organs.
Rheumatoid arthritis affects joint linings, causing painful swelling. Over long periods of time, the inflammation associated with rheumatoid arthritis can cause bone erosion and joint deformity.
While there’s no cure for rheumatoid arthritis, physiotherapy and medication can help slow the disease’s progression. Most cases can be managed with a class of medications called anti-rheumatic drugs (DMARDS)

The Separation of Self, Church, and Relationships

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I don’t know what I would I do if I were  married to a person that was not motivated or disciplined enough to achieve their dreams and goals. What if you wanted a better life and they were okay with just getting by? I would be so miserable in either situation. I have known marriages to break up over one not wanting to advance, while the other one did and I have seen another break up because one was content just getting by. I’ve seen hardworking men and lazy women, hardworking women and lazy men. I’ve also seen Churches command people to say in these marriages and I’ve seen people encourage others to stay in misery. I mean yes, try, try as many times as you can, get counseling, etc. but at what point do you walk away? I guess only YOU can be brave enough to make that decision and that is the way it should be. You should be able to make it without judgement and without guilt. You should have the support of friends, family, and your God. After all, God is like a Father and I wouldn’t think any loving, caring, father would want you to be miserable in any relationship. And just remember, back then and even now in some countries, women had no say in who they would marry. I don’t think that was of God either! I think it was more cultural than anything.

Well, what about those of us that are dating, in a relationship, living with a significant other? If you see they are not motivated or disciplined enough to pursue their dreams and goals how does that make you feel? Are you slowing down to be their 24/7 cheerleader? Are you doing things for them they could do for themselves? Filling out applications and calling to see if someone is hiring? Googling and researching how to start a repair shop? These are things they can DO FOR THEMSELVES. We can get so involved in helping others we neglect our own dreams, goals, and visions.

Listen, I am about to say something to those of you that are NOT  married. You need to continue to go after your dreams with all of your might and heart while you are not married. Especially, if you have a partner that seems to be lethargic. I mean if your fire doesn’t light their fire, if your encouragement is not enough, if your support and help is not enough, it never will be. I’d rather see manifestation before I say I do, than to see it after and the person lives off of my success. I don’t think there is enough love in the world for me to marry someone that wants to struggle, makes crazy decisions about finances, or that is unstable in employment. I guess in the past, I may have been so blind and so in love, I would have. BUT now that I am more mature and have a better understand of myself, I couldn’t. I wouldn’t. If it’s a strain NOW it will be a BURDEN later. The same stands for me spiritually. If I am in a spiritual place they are not in, if our souls are not aligned, I must say good-bye. I don’t have the time for them to play catch up at my age (44). I mean to be 3 miles behind is different than being 30 miles behind. Our ideals, hearts, minds, souls, have to line up somewhat, close I would think. Not perfectly, but certainly not miles and miles and ideals apart which leads to and unequally yoked environment. Personalities and temperaments matter! Comprehension levels and upbringing matters. Maturity levels matter! No relationship or marriage is easy or perfect and I get that. But, should I be sad, mad, 5 days out of 7? Should we be pretending to be okay at church, in front of friends,  and on social media?

I don’t know what the other person is going to do if they are not trying to build a stable life, live out there dreams, or grow. I just know that I have chosen to go forth, full steam ahead, making stops and slowing down to help those that are trying to help themselves as far as dreams and goals are concerned. I don’t want to be bound by Church to stay and I don’t want to be bound by a relationship. I have a right to peace and happiness. Contrary to popular belief, God does care about my peace of mind, my happiness, and what I am called to do. I don’t know if I will ever marry, I hope so. I want to. But, I would have to be 100% certain. In the meantime, I will continue to wait on Divine Intervention. 🙂

~Nikki

 

Sunday Morning Coffee Musing: A Castle of Peace

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It’s been my ritual to get up in the mornings before everyone (my daughter or when we are on vacation, friends and family) and to have my time to myself. I enjoy quiet mornings or time to myself when I may do what I am doing now. Blogging and watching CBS Sunday Morning before I go to church.

My mind is on a home of peace. I am quiet by nature. Although, I can get loud and talkative. I like having a good time and I understand that we all have ideas about a good time. I also know myself. I can be easily annoyed and I don’t really like loud noise. I understand as a parent and an aunt, children are loud. There is no question about that. However, even children should learn to tone it down and realize how their noise interferes with others’ peace or ability to hear, sleep, study, exist (lol), etc.

When dating or living with your mate (yeah I said that and yes I am Christian and what others do is really not my business), you want to be sure  you can tolerate your mate’s annoyances. You need to know if you can deal with their personality, their quirks and their habits. Do you know why? Because these are the things that disturb your peace and cause you to be annoyed.

We often take annoyances lightly as if they can’t affect the relationship. But, it is the little foxes that spoil the vine. These little things often come up in conversation and arguments. A messy mate, a mate that doesn’t help with household chores, a mate that is loud and obnoxious at the wrong time, a mate that only thinks about herself, a mate that nit picks and on and on. Some of these things are not small things like are you and your mate on the same level spiritually? What about drama? What about a mate that is childish? After you take off the rose colored glasses, what do you really see?

We don’t hear much these days the saying “A man’s home is his castle.” There are women with castles, estates, mansions, homes, condos, and town homes and apartments. You don’t rule alone if you have a mate or children. I am use to a house of peace. I have lived with and raised a daughter. Do I conform to a house of noise? What if it’s not in my nature? What if I am noise sensitive? I am. I also suffer with anxiety and depression. I think this has an impact on things as well. Your mental state is affected by a lack of peace in your life, home, job, relationships, which all of these things make up life! My mate learns to pipe down and I learn to tolerate a reasonable amount of noise or we can’t coexist. And if we can’t coexist, we can’t be together. There would be conflict daily. Sometimes, it’s a reality that needs to be faced, but some people hold on because they are afraid to be by themselves. I use to be like that. However, these days I like a castle with peace and occasional parties and noise is okay with me.

~Nikki