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

20181106_134136

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 1: RA/RD BLOG WEEK: DEALING

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

de32ef901d60fec626667fc89acca334

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

FInal-2019-PNG-badge-marked-RD-nto-RA

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)

Sunday Morning Coffee Musing: Physical Limitations, Anxiety, & Will They Understand?

img_20190120_105800_892

“Nicole, you need to get out. You need to get with people that like to do the things you like to do. You need to go places you like to go and maybe you will meet people that like to do the things you do.” -Therapist

“Sounds like a plan. I am on it.”- Me

And as I began to search for a group, so began the anxiety. “Nicole, you never come around. Nicole, you hardly ever show up. Nicole, why can’t you go here, there, and everywhere. Nicole, I am tired, too. Nicole, I have done 20 things this week and you have only done 5 and you are exhausted? Why don’t you try ginseng, turmeric, more exercise, go gluten free, try the Keto diet, the Mediterranean diet.” Oh-My-Gosh would you please leave me alone is what I think, but I just nod my head. After all, you are just trying to help I suppose.

I joined a few groups and I started a group in spite of these concerns. I don’t know how it’s going to pan out. I don’t know if they will be like most people and “just don’t get it” or if finally, someone will get it. Either way, I will still be who I am with what I have and on a continuous path to growth. Hopefully, I can make some new friends along the way that enjoy the things I enjoy, too.

~Nikki

 

 

2018 and The It Is Well Within Me Tour

47349053_10158026927018266_8085088321958576128_n

My 2018 will not end until March 2019 spiritually speaking. My birthday is my New Year and every year there is something I work on until the next year. This year was about not just things being well within me, like my mental health, physical health or what was going on in my life, etc. But, it was about ME being okay, with who I am, what I want, what I think, how I feel and so on. We can say it was about Nikki becoming not just more, but completely comfortable with her own ideas, her own voice, saying no and not feeling bad about it, pulling back from family drama, false friendships, speaking my truth even it hurt some feelings, and understanding the issues I have, the trauma I have endured will not go away over night. I have to learn to BE WELL with the healing process and to BE WELL WITHIN about it. I can’t hurry up and get it over with, but I can do my part to move it along. I feel like what I don’t want is being filtered out and by the time March rolls around I will be pretty much done with this lesson.

Today I woke up to a low mood. It was last Sunday when I had a really bad bout of depression. Today when I opened my eyes I knew something was wrong and it was hard to get up, start my day. It did not take long to realize I was in another slump, but no where near as bad as last Sunday. Of course I googled the exact feeling that came to my mind: low mood in the morning. And what do you know, morning depression. I found some information from a few credible sites, and then I thought about what was I thinking about last night, all day, all week even. This is something I learned from the psychologist. It may appear as if I wasn’t thinking about anything. And that may be true some times. So, I had to be honest with myself. And I was. And after that, I had to not judge myself harshly the was I have been taught to judge myself, but instead, show myself some compassion. And I did. And I am. Not to mention, I didn’t sleep well last night either. And I haven’t been sleeping well. Some of it is my fault. Some of it is painsomnia.

I will be home tonight for the New Year’s Eve. I don’t want to party with Cardi or anyone lol! I don’t want to go to church either. It’s not my first time being home or being alone as my daughter will be at a sleepover. I am not sad or anything like that. I just want to brighten up a bit, maybe plan out a few things, and get some rest. Hopefully, it will be raining cats and dogs so the ignorant in the city will not shoot guns.

Happy New Year!

~Nikki

Vegas and RA: The Good, The Bad, The Really Bad and Ugly

I have shared with you my wonderful and brief trip in Vegas. The shopping, the entertainment, tourism, my fashion, and family fun. I know it seems so glamourous or maybe not lol! But, anyone can take a trip and it has nothing to do with having a luxurious job, which I don’t have. But, it has everything to do with finding the best deals and planning way, way, ahead. Remember, you can do whatever you set your mind to.

47133423_10158021680068266_5031508407207591936_n

Speaking of planning, when you have certain physical illnesses and diseases, limitations, etc. you have to learn to plan ahead as much as possible. We who have Rheumatoid Disease, Fibromyalgia, and other illnesses understand our dis-ease can be UNPREDICTABLE. So, this is where experience comes in, Google, and planning ahead as best you can.

  • I forgot my cute and much needed hot/cold reusable water packs. I have a small and a large one I usually take with me. You can find them at TJMaxx or on Amazon.
  • So, that was out! In Vegas there is WALKING, WALKING, WALKING, AND MORE WALKING! However, it is easily accessible for those with wheelchairs if you have one. So, don’t let that deter you from Vegas or anywhere else on this planet. I had my best pair of sneakers. This is not the time to break in a new pair. Go with a sure thing.
  • Pain meds ahead of time if possible. All meds on time. However, if I know I am going to have more than one drink, I will skip my meds. I am just being honest with you. You, however, follow your doctors orders. I’m not that big of a drinker meaning I can have it or not and still have a great time. I am allowed, per my doctor, a glass of wine per day if I want it. It’s not that serious for me.
  • Comfy house shoes with memory foam or something that is plush
  • Pain cream or gel
  • Foldable Flats and a purse that will fit them
  • Epsom Salt

Now, here is where it gets bad and ugly. I love heels and I can still wear them, but not the really high ones I use to wear. I blogged about that journey and halidux rigidus surgery a few years ago. I made the choice and sacrifice to wear some really cute heels to a club to see a celeb DJ. The walk there was fine. The dancing the night away was fine, but when I stopped I knew I was in trouble. The walk back was TORTUROUS. I can’t begin to describe to you the pain I felt. I knew I was going to have more than one drink so I skipped my meds. I had to rely on other methods and time to relieve my incredible pain.

47386410_10158024952588266_2605444710713524224_n

You are not suppose to walk through the hotel or casino with your shoes off. By the time my cousin and I got close to our rooms, we took off our shoes and sighed the biggest relief! Trust me! The picture below is how we felt after those “contraptions” called heels came off!

47319718_10158025691968266_7803077419228725248_n

But it did not stop there for me. I was swollen from the feet up to the knees. My feet were as red as fire and the neuropathy felt like shocks and this set off the fibromyalgia. I thought to myself, “WTH! I wasn’t expecting it to be THIS BAD!” But like I mentioned to you before, this disease is very unpredictable. I did not feel my bones hurting, but I figure they would be tomorrow. I could hardly walk on my feet and I had my plush house shoes with me. They only helped a little this time because the reaction was UNPREDICTABLE! I applied the pain cream and NOTHING! NO RELIEF!

 

 

I was like OMG and then I was like Dear God, please let this ease up. I tried to sleep and I could not. Below is a picture of the next evening (note I did well all the next day with my sneakers on), when we were going out again but decided on a fancy dinner instead. This is the results with flat shoes which is what they looked liked the night I took off my heels. I was in so much pain and discomfort that night I wasn’t thinking about anymore photos lol! But no lol! The only difference is the pain was minimum but the swelling was MAX. And the crazy thing is, I wasn’t in these shoes but a couple of hours. My feet were like, “No ma’am! Not again!”

no-maam-not.jpg

So, what did I do the night I had on heels and the pain was off the charts. I GOOGLED what to naturally do to ease neuropathy, fibromyalgia, RA. I read until I found something I could do. And here is what I will always want in a hotel from here on out. A good CLEAN (I am so OCD about bathrooms and what they look like) tub I can soak in AND once I get to my destination buy some Epsom Salt! This is my new thing to do or find a small pack if I am flying, to bring with me. Add that to the list. Thank GOD the Luxor Hotel in Vegas had a soakers tub! I filled it up with hot water, grabbed my phone and started a guided meditation session on chronic pain with my Inside Timer App, and soaked for about 20 minutes. I felt 50% better. If I would have had some Epsom Salt, I would probably have been at 75%. I was able to feel the difference and fall asleep.

The meditation app helped because I was in BIG pain and feeling so anxious, defeated, a bit jilted, and was slipping into a “Wish I never had this stupid disease rant” and I miss my old self. The meditation helped bring my emotions down and helped clear my mind and bring focus. Here I was finding the best solution to my problem at the moment.

I wish I could tell you that I won’t do that again. But, I don’t want to lie to you. Vegas is my YOLO ZEN place and it’s only once a year. I don’t how long I will be able to travel because of RA and it’s complications. I can tell you that I will bring a purse big enough for my foldable flats!!! I didn’t think I would need them because where we were going was close to the hotel. I did not factor in how much dancing I would be doing. Oh well, you live, you learn , you survive another day.

I had other pain in Vegas because of the walking. It’s like I said, this is not something I do every day and it’s expected when I travel. In the RA group many had to stop traveling or keep it to a minimum. I think I am midway at 43 with traveling. I have a few places I would like to see and hope I don’t ever have to give traveling up completely.

~Nikki

 

 

 

 

 

 

 

Weekend Confetti: Muddy’s & More

20180303_122951

 

It was a great weekend for me because I was pretty much pain free and free from the responsibilities of “adulting.” So what does one do with a weekend like this, well the first thing I did was sleep in! And then I went to Muddy’s for cupcakes. It’s my birthday month and I share this month with my daughter. When you walk into the doors of Muddy’s you are always greeted with a smile. I mean, hey, they bake sweet treats and that makes the employees just as happy as the customers that walk in! They bake cookies and cakes as well.

It’s a neat small place and I always like small spaces that make you feel like you can sit a while. It’s happily decorated and as a coffee connoisseur I noticed the coffee nook first. 20180303_123145

I was craving the wedding cake cupcake and that is how I ended up here Saturday. Well, you can’t just get one. You “need” at least four! The purple is named “Called a Cab” and there is Red Velvet in the mix as well. There’s a chocolate one named “Prozac” mmm mmm delicious for chocolate addicts…uh lovers.

After getting cupcakes I was ready for lunch. I headed over to Mellow Mushroom for a calzone and white sangria.

I love the veggie calzone but, I was in the mood for something meat I asked to be seated  on the patio, feeling the cool breeze mixed with the heaters above the table is perfect combination. Clear skies, sunny, and the music made you want to dance in your seat or at least, sing out loud which some people did. I like that it’s a variety of past hits from various genres. After eating lunch, I had a little time to kill before a wine tasting so I stopped by a consignment store and found a very cute pair of heels by Ann Taylor. I got them for $10! And I used my credit from a previous sale which was $10. My next stop was a wine tasting at Kirby Wines and Liquors. It was a tasting of Stella Rose flavored wines. I was feeling a bit tired afterwards and went home to rest. Believe it or not I regained just enough energy to make it to a family event; a birthday and anniversary party combined. I had a good time overall.

It was great feeling normal again even though I am paying for it dearly today. This is what usually happens to those of us that live a life of chronic pain. When we have a “good day” we usually take advantage of it. For one moment, I almost felt a bit sad that it couldn’t be like this all the time. I miss my old life. But, I decided to just enjoy this moment and day. This was a day that the Lord had made, I rejoiced and was glad in it. When you count your blessings, you can count it all joy.

~Nikki

28616546_10157226943673266_6871649220454664631_o