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

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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

 

Does Weather Affect RAD(Rheumatoid Arthritis Dis-ease) and Fibromyalgia?

 

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The hurricane is influencing the weather here in my city. I can feel it and it doesn’t feel good at all. I really need my hands today. You can’t tell me weather doesn’t affect joints or muscle. I don’t understand after all the research and patient information, discussions about humidity and barometric pressure, why doctors have yet to admit this and state it as fact. What more evidence do you need? It may not affect everyone, but it is a fact for many of us.

Yesterday, I took every unnecessary item out of my purse and I still could not put my purse on my shoulders very long. Switching it back and forth I felt like throwing it across the store. But, that may get the attention of security and brand me a “crazy lady.” I don’t want to be the talk at the table of employees of my local grocery store.

As I pray and donate to the victims in Houston, I put my pain in prospective. I think of all of the autoimmune warriors there who are experiencing a stress I pray I never have to feel. And today we pray for New Orleans. We do not want it to be Deja Vu. As for me and my unpredictable, growing pain in my hands, wrists, forearms, feet, and ankles today, I sit aside many things on my “to do” list and whatever I accomplish today will be enough.

~Nikki

RA BLOG: Enthesopathy/Enthesitis

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It started in January and it has not left me yet. I thought it was “just” joint pain from rheumatoid arthritis in the left hip giving me a hard time and keeping me tossing and turning at night. Surely, it will go away. It didn’t and I tried prednisone because I thought I was having a flare. That didn’t do much. I tried naproxen and it didn’t do much either. It got really bad and then during the day, instead of going away it just dulled and would flare at time. I called my rheumy.

“Come in for a shot!” Oh no! I didn’t want that! But as I went the next day, he examined me first and said, “No. You don’t need a shot. You have an inflamed ligament. Let’s try physical therapy. Once in physical therapy, I learned the name of this condition: enthesopathy. The inflammation of it is enthesitis. I have that.

“In medicine, an enthesopathy refers to a disorder involving the attachment of a tendon or ligament to a bone. This site of attachment is known as the entheses. If the condition is known to be inflammatory, it can more precisely be called an enthesitis.”

Last night was awful. It had been nagging a few days. The new pain medicine did nothing. I got some relief with the heating pad. My concern is that this could be a permanent condition and there could be damage as I researched credible sites that said this could be possible for those with an autoimmune disease.

As I try not to worry about it much, and face these things head on, it is very difficult when RA seems to present an obstacle course on top of the obstacle of life.

~Nikki

RA BLOG: Limiting Pity Parties

Pity has a pit that is hard to get out of once you fall into it. If you’re going to dance around it, do so from a distance and make it less than often.-Nicole Jackson

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I can tell you to stop feeling sorry for yourself, never feel sorry for yourself, or that it’s okay to feel sorry for yourself. Either you do or you don’t or you use to. Perhaps you have a different personality and you never felt sorry for yourself. If this is you, then I might suggest you have some compassion, some empathy, or try to understand those that do.

Feeling sorry for yourself can lead you into a pit. There is a difference when it comes to having a pity party…parties must come to an end and the sooner the pity party ends the better. You see, if a person falls into a pit of pity then that is a very dark place. Some never make it out and it turns into a debilitating way of living and approaching life. It’s all about what you use to could do and all about what you can’t do now. It focuses on what RA or an illness or disease has taken away from you and not what you still have left. Or what you can obtain now! It’s all about your problems, never about solutions. It’s about “I can’t before you try” or a “I tried once and I’ll never try again.”

I’ll be honest with you. I’ve had some pity parties way before Rheumatoid Arthritis exploded into my bones. I am sure it was the talking of wise people, encouraging people, that said a combination of “You’ve got to get over this, get over it, feel what you feel, don’t feel, etc.”that lead me to a method that has lessened my pity parties and the time spent in them. The method for me is, depending on what has happened and the depth of it, is: PUT A TIME LIMIT ON IT and start shutting the party down. I can’t tell you not to throw one in the first place, I don’t control how you feel no more than you can control how I feel. But, if you are going to go there, know that you can’t stay at this party too long and no one else wants to stay too long either!  Your party can turn into a PIT! I limit myself to 5 minutes to a few days and then I have to, I must start working my way out, regardless of how I feel. REGARDLESS OF HOW I FEEL.

You work your way out by moving, physically. You work your way out with prayer. You work your way out with telling yourself the TRUTH about yourself (who God says you are) and not who others say you are. You build yourself up and instead of tearing yourself down. This is how you get out of the pit or shut the pit party down. You see a therapist, you see a pastor, you use the skills, you get a self help book, or you surround yourself with a support group. Whatever you have to do, you do it!  (But, it’s hard Nikki…well, don’t let that stop you)

~Nikki

 

 

 

RA BLOG:YOGA, Shoulders and RA

Practice these poses on a regular basis and you will have very little problems zipping up your dress, washing your back, reaching your hind parts (lol) etc when you get older. Or if you are having those problems now the more you attempt to do these, or even simply grasping your hands behind your back, it will get better.

Someone is going to say “I can’t do that!” Well, yoga is not whether or not you can do a pose exactly like it’s done…it requires that you do the best you can and work your way to the pose or as close to it as you can. Over time, you can inch your way up to the middle of the back. It’s a slow process.I still can’t do either one of these if you are judging by the photos on the right. Yoga’s a no judgement, no competition zone. You may not even be able to close your hands all the way. And the other pose, where arms come around in opposite directions to the middle of the back, you can use a towel to gently pull up.

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~Nikki

Sunday Morning Coffee Musing: RA Blog: An Extraordinary Life

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I have a word of encouragement to all, but especially for those who have  rheumatoid arthritis, fibromyalgia, lupus or any other illness or chronic pain. You can still live an extraordinary life and you can still leave an extraordinary legacy. Now, how you do that is totally up to you, but I urge you to ask your Source. Whether you are waiting on healing or whether you have accepted this assignment, I don’t know. But in the meantime you must reach beyond your pain and into your heart. And let me point this out to you; the extraordinary is not so much found in what we think we are, material things or grand adventures, who we were before this illness/dis-ease, we were extraordinary then and we are NOW. The extraordinary can be found in everyday things and people that surround us. And most of all within! Maybe you have recently found out you have one of these illnesses or dis-eases and you are devastated. You are trying to find your bearings. Don’t worry you will. I’m speaking from experience and when you do, when you come up with your new game plan, with your new approach to life, I will still urge you to live this life with extraordinary #action #thoughts #compassion #love#truth #wisdom #courage #boldness and #passion. Life itself is #extraordinary all on it’s own. And the truth is while these things physically attempts to wreak havoc on our bodies (succeeding or not) and life, here is something to remember…the real battle is either won or loss in the mind.
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~Nikki