Biologics: Feeling Some Type of Way

How perfect is this prompt of Biologics and how I feel about them since I started my first injection this Monday? When I read about biologics and TNF I was like whoa! Much like the gif you see above!

I was on methotrexate and when I got a new Rheumatologist, he immediately took me off of methotrexate and the daily dose of Naproxen. He said I’d been on it way too long! I wasn’t getting any benefit from it but, I thought heck, I “guess” it’s working in comparison when I first was diagnosed. So we moved on to Arava. It worked very well. I didn’t have morning stiffness but, it still took me forever to get it together in the mornings and in my Prince voice, rest his soul, “Forever is a mighty long time.”-Go Crazy.

This year, I began to have numbness and tingling in my hands, arms, legs so severe it would wake me up in pain. After, many tests, I have a bad case of carpel tunnel and I have some nerve damage in my legs. My RA doc took me off Arava saying it might be the cause. The Neurologists bumped up my Gabbapentin. The RA doc said we have tried everything let’s move to an injection. My heart dropped.

I don’t want to stick myself was my first thought. Secondly, I don’t know about fake things hooking up with my real things in my body. I understand that the pills I swallow are man made, but eh…biologics is an even greater gamble of infections and I am already at risk for infections. There is no proof it works any better but, I have seen raving reviews of Embrel and I have seen blank stares as if, it didn’t do much.

I gave myself my first injection Monday. I haven’t had any immediate side effects. I have not had any immediate relief as I am in a flare of two days now. So, I don’t know how I feel about Biologics. Sometimes, with RA and Fibro…I just get tired of feeling, thinking, and worrying so much.

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~Nikki

Sunday Morning Coffee Musing: Don’t Crowd Fund Your Self Esteem

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Cup of coffee and clementines. Photo by Natalia van Doninck on Getty Images

It’s not possible you would know everyone who walks along a crowded street or those standing with you at a concert.Crowd funding consists of strangers and a few people you know contributing to your cause or project. It’s not likely those people know you from the eyes of a good friend or the perspective of a wonderful family member. So, in this life why do we seem to crowd fund our self esteem? I know I am guilty of this from time to time but, oh I remember the days where I relied heavily on the opinions of others and even sought after validation. Thank God! Thank God because I did the hard work and made it through the mistakes to get to this point to talk to you, unashamed, about crowd funding your self esteem.

What people don’t understand about those who struggle with self esteem issues is it didn’t start yesterday. They also don’t understand the complex journey it takes to go back in your life and discover where the seeds were planted and the hard work it takes to cut the roots of low self esteem. Crowd funding your self esteem is when you rely on the contributions of others opinions to fund how you feel about yourself. You should cancel this fund raiser (thought) each time it pops in your mind. I could go through a bunch of steps on how to do this but there is this one saying that sums it up and you could tape it to your forehead or mirror. Which ever is more fashionable for you!

The quote is: Comparison is the thief of joy-Theodore Roosevelt

Why are you sad now? Why are you feeling defeated now? Why are you feeling bad about yourself now? You just compared your progress, success, where you are, to someone else’s progress, success, how farther they are in life than you are and now your joy has been stolen by comparison. Stop that. Learn to admire others and set your OWN goals. If June buys a million dollar home don’t try to buy a million dollar home simply to measure your success by June’s. Look at your bank account, do the math, and buy what you can afford. If Courtney just ran her first marathon and you just made it running a mile, how UNFAIR is that to compare yourself? Your diligence and her diligence is simply diligence. I tell you “a truth” as Jesus said in the Bible when he was about to introduce a new concept: If you learn to CELEBRATE YOUR VICTORIES AS WELL AS OTHERS you wouldn’t need to crowd fund your self esteem.

Don’t compare yourself with others. Instead, celebrate yourself and others.

~Nikki

Pain and Potato Chips

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If you suffer from chronic pain such as fibromyalgia, rheumatoid arthritis, lupus or any of the likes you know what it’s like to be in some sort of constant discomfort whether it’s on a scale of 10 during flares or that annoying low grade pain that eventually wears you down. Many of us have weight issues before we ever have the diagnosis or you gain as soon as you are put on the medication. It makes losing weight a challenge to say the least and then to add insult to injury the connection between pain and eating.

I understand emotional eating but, tack on a physical pain and you are certain to go off the radar into the black hole of weight gain. I find myself mindlessly snacking or over indulging during low to mid grade pain that is working my nerves literally and figurative. The stabbing pain of fibromyalgia and the joint pain of rheumatoid is taken down a notch by medication or pain meds but, many times it doesn’t go away. I rarely mindlessly snack or overindulge during big flares. I can’t. But maybe some of you do.

I have decided to make sure I prepare by purchasing some healthy snack alternatives to have on hand so I can get some nutritional value during those times. I also will try to turn my attention to something other than the TV because that can lead to more snacking. Share your tips and ideas if you don’t mind or maybe some of your favorite healthy but tasty snacks or some of your hobbies to get your mind off your pain and food. Perhaps we can help each other out. Many times when you have pain you don’t want to do anything too strenuous but snacking all day and overindulging is not helping us at all.

~Nikki

Kanye-ing Anxiety

 

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There are  times in life when we will face some really difficult situations which can cause us to “worry” or to become “concerned” about the outcome. Anxiety is a perpetual worry and concern. It can come like a flood seemingly out of nowhere or it can come immediately when something foreseen or not begins to manifest right before our eyes. And many times  it may never manifest or at least not to the full degree we allow ourselves to imagine. It is when our active imagination takes us out in the deep where we lose sight of the shore of hope and faith. We are no longer anchored to the shore. We are floating out on a sea of shaky thoughts. We become “see” sick by the things we imagine will happen.

I ran across this quote and I had this thought: “Oh, it’s like Kanye-ing thoughts which create anxiety.” Imagine anxiety with a mic and you run up on stage and say “Look, I’m not going to give the mic back. However, I would like to thank the Creator for all that I have. I am grateful for life. I am thankful for the breath I breathe. I am thankful for the clothes and shoes I have. I am happy I can see, walk, talk and taste the food I have. I am so very grateful for the lessons I am learning….”  You know blah blah blah good stuff until Anxiety walks off the stage and has a seat.

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In many cases it’s rude to interrupt but, it’s perfectly fine to interrupt negative thoughts and “what ifs” that create and build up negative emotions that send you into anxiety rap battles also know as anxiety attacks. I remember reading a book by Inyanla Vanzant that stated “If you are going to play the “what if” game, play the other side.” In other words, what about “what if” it doesn’t happen? Instead, use your imagination to create solutions and calm. Also, if you play the what if game, then ask yourself what can I do if that does happen. I know it’s not easy. I know from experience. However, it’s worth cutting off negative thoughts or anxiety and filling your mind with gratitude instead.

~Nikki

The Mental Whip of Fibromyalgia

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As I type this there is a shooting pain in my fingers. It was pain in my face and well as you may know, fibromyalgia pain can move around your body fast and sharp like lightening. I have swelling and I am tired. I don’t want to talk. However, it’s not easy to do when you have to be a parent and you must put on your parent face. Even if that face feels like it’s being electrocuted.

I am not surprised there is a link to chronic pain/illnesses and depression. The way the two chronic pain twins I have, Rheumatoid Arthritis and Fibromyalgia wrecks havoc on my body, I can tell you it can be more than a battle. It can be a war.

Today I have experienced little sharp pains on and off. I did not rest well last night because of carpal tunnel in both of my hands and forearms. So, I am very tired. Later, this evening the sharp pains began to move around and intensify. Again, on and off. Add stress from an event today and my mind is on a roller coaster of I can handle it on the way up and I can’t take this @#$%! on the way down. I’m angry. I ‘m sad. I am hurting. My skin feels like something is crawling on it and it’s itchy at times. This is so annoying and it drives you nuts.

The mental whip of chronic pain is one with sharp objects attached to it. It rips away at your soul as it pulls out and damages your psyche as it comes back in for more. The thoughts to stay strong, when you really want to crash and burn, and sometimes, many times you do, is war. Your body and your mind, and your spirit is taking a beating.

I will pray for us tonight.

~Nikki

 

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Rise Up Again

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You have the courage and the strength to rise up again. Again means you have done it before and  if you have done it before you can do it again. I know. it’s never been this devastating. I know, it’s never been this dark. I know it’s never been this hard. Still, you have it in you to rise once more and again if you have to. And when you rise, pray.

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And when you rise up, TAKE courage. Sometimes you have to TAKE courage and do what needs to be done.

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Rise up.

~Nikki

 

 

Cooking w/Chronic Illnesses? Yeah. Right.

 

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Some of us loved to cook before Chronic Illnesses invaded our lives. Before fatigue, pain, damaged nerves, etc we didn’t mind getting in the kitchen and whipping up a feast or our favorite meals. In many forums I’ve seen some give up by force and some by choice. And that’s okay. Then there are those like me, stubborn and not willing to give up completely. I’ll go down in this ship and they will have to pry that spatula from my rheumatoid arthritic hand.

I’ve been known to be a bit hard headed. I’ve been known to spontaneously decide to do zumba when I’m not suppose to because it’s high impact and then pay the cost later. Usually, friends asking, was it worth the pain? Was it worth the flare? The correct answer is no. But I do feel some sort of satisfaction for doing something RA/RD took away from me. I’m sure I’ll stop that madness soon… Especially after that recent big flare and fatigue.

But cooking, especially when you have a family is not so easy to give up. Plus, I don’t have the money for a personal chef and my daughter is just now old enough to be trusted in the kitchen (thank God). However, when she wasn’t I had to cook. But I’m teaching her and it’s helping out more and more. I’ve scheduled her days and my days. I love cooking and having family/friends over and while I won’t give it up, I must make the necessary adjustments and take calculated risks at best. I really can’t do big feasts and extravagant meals like I did in the past but I can find new ways and new meals. I can adapt old recipes and plan meals out. I can. I will. Until I can’t.

Today, I’ll share a tool I love. The wok. Stir fry. Quick. Easy. And if you are worried about chopping vegetables don’t. Buy them at your local grocery in the frozen section. Also, I learned with Rheumatoid in my hands not to use so much force in stirring and to keep the wrist straight, using swift gentle motions. I’ve even used the wok with my compression gloves on. Also, investing in a chopper or processer is the best thing you can do.

Speaking of chopping and slicing vegetables, it’s difficult to slice and chop hard, thick, dense vegetables such as potatoes. Get someone else to do it if you can. Get a slicer. I didn’t mind slicing and dicing before. You know, it’s the touching and creating, the work of the art of cooking. I do sometimes still cut, slice, chop, easy vegetables like: Squash, zucchini, bell pepper, etc. I like fresh vegetables. On a good hand day I’ll cut and freeze them for later. Many times with help from my daughter.

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I hope to bring you more of my mishaps and lessons, simple recipes and meals.

~ Nikki