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

 

 

Advertisements

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

 

 

 

 

 

 

 

Today’s Affirmations

spiritual-candle-colors-810x540

Today’s affirmation:
Wealth and riches shall be in my house.
Everything I lay my hand to succeeds and prospers
I prosper, my health prospers, my relationship prospers
The more I give the more is given to me
The more I love the more I am loved
My loyalty is returned 100 fold

 

Can We Be Friends If You Can’t Understand Rheumatoid Disease is a DIS-EASE?

flat,800x800,075,t.u1

When Rheumatoid Arthritis was in remission, yes, it is a disease that can go into remission, I was living it up! Going going gone! A whirlwind of endless fun and good times. My energy was unbelievable. People would say “You are always on the go” or “You walk by so fast it’s like a blur!” Working 10 hour days 5 days a week and then getting all the overtime I wanted. At one job, working 12 hour days and filling in days and nights. It was nothing. I would rest later. I was a mom that was full of energy and I thank God I had that time when my daughter was very small and RA didn’t come until here tween years. Yet, I often feel guilty that we aren’t out and about as much as I would like and often I get tired or hurt before a day of fun is over.

I’m okay with who I am and how I have to operate to preserve my body and my peace of mind. I have found that others, strangers, friends and family are not. I have pretty much embraced that RA has returned and it brought along some of it’s friends; fibromyalgia, osteoarthritis, and diabetes to ensure my demise. Epic fail indeed! I am still alive, well, and kicking. Albeit, in a different and new way that I am getting use to.

If I go home because I can’t go hard is that a strike against me? Am I the party pooper? If I need a break, a nap, or choose to chill when we are on vacation, am I boring? How so? What you eat doesn’t make me poop! So what I do shouldn’t make you constipated. What people like me want is your understanding, not your criticism. We don’t really want your sympathy, but your empathy and really I don’t need that. I prefer you to understand and keep the party going without me. True, I am the life of the party (haaaaaaa!!!!!) when I am in party and wilding out mode but, in reality the party goes on. So you don’t have to talk about us behind our backs and you can keep the rolling of the eyes, too. If you can’t adapt to the new me and yet I am the one carrying the load and I have adjusted my new crown, then I don’t think we can be friends.

Do what I do. Enjoy those moments when I am riding high. Cutting up and laughing. Enjoy those times that I can pull an all niter, when I am on the floor dancing (something I love to do) and I am hosting a party on my feet making sure you enjoy your night. Note, I will have to pay dearly for the physical things I do later and for how long and how bad is anyone’s guess. It’s a sacrifice willingly made. Google Rheumatoid Arthritis Disease, Fibromyalgia, etc.  to understand what your friend or person you love is going through and HOW it IMPACTS their life. Heck, (really wanted to say hell), talk to them and LISTEN. It impacts everyone differently.

In all your gathering of information, cures, judgments, undocumented medical advice and unsolicited advice, get an understanding by caring enough to understand the needs of a person you call a friend or family member. Know that I am always grateful and appreciative of natural remedies, exercises to help me, or even friends that call to tell me about a medication. I know that they are thinking about me.

get-understanding

~Nikki

 

RA BLOG: A Blow to the Jaw

hook_punch_boxing_main

I remember a dream I had before Rheumatoid Disease returned to my life. It was a dream about losing my teeth as I was floating down a tunnel. I woke up horrified and started to pray. I thought it may be related to wisdom…I was wrong.

I’ve had a few cavities in my lifetime but, I have not had as nearly as many as I have had since RA. In fact I have had two teeth crumble and cavities in my wisdom teeth. They had to be removed yesterday and let’s just say it went down hill.

I have a great dentist with an amazing staff. Upon extraction both teeth split. The dentist had to cut around the gum also to loosen the teeth. I had to have gas to help keep me calm since I have developed anxiety (or finally got a diagnosis). It was still a nerve racking ordeal. And I had a very difficult time getting the socket to clot. I had to sleep in an upright position and that was impossible to be comfortable with RA, Bursitis in the hip and fibromyalgia. I had insomnia. Pillows were sliding and my mind was all over the place. Eventually, it clotted in the wee hours of the morning. I was up changing gauze and using tea bags. ROUGH.

I am 42 and I am ashamed to open my mouth as a speaker, a friend, a mother, a family member, and potential date. I would love to have implants, and I plan to, but at $4400 out of pocket this is not possible. So, what’s my next option? A partial. It’s obtainable. And if I wait a year insurance will pay some of it. I am not replacing the wisdom teeth of course, but the other two that crumble. Twice I have experienced TMJ.

This blog is an open and honest blog. So, here it is: I think I am pretty. I love my smile and now I don’t love to smile. I am insecure about my appearance and as a single girl I feel as if dating just got even more challenging. Even if I do get the partial, how will the person I meet feel about me not having all of my teeth? They may think it’s because I didn’t take care of my teeth. I did. I flossed. I brushed. I rinsed. What else can you do? I am not even that big of a sugar addict. Though I do have my moments.

Some say there is a link to RA and gum disease, dry mouth, or Sojourns disease and some say it is not. My dentist doesn’t think it’s RA but, it could be the medication that causes dry mouth and fosters the progression of cavities. I just found out that I do have dry eyes and my Rheumy prescribed over the counter dry eye drops. Sigh…I feel that I am falling apart at 42. And yet, I still have hope that all will work out for my good.

~Nikki

 

 

RA BLOG Week: RA/Rheumatoid Disease and Mental Health

a-lot-on-your-mind
A Lot on Your Mind by Evan Sheline

If you get a cold or the flu, it’s okay because in a few days or a week, you will return to your healthy self. In those days, it will be physically and mentally draining. After all, no one enjoys being sick even if it for a week. Imagine the nightmare of becoming ill with something you can not get rid of. Imagine the pain comes in all variables to be described as nagging aches to excruciating to kill me now. You can’t do all of the things you use to do and what you can do has to be modified. How will you continue to survive and thrive in this world? How will you continue to provide for your family? Will you be able to do all of the things you planned? Will people think you are lazy or have given up if you can no longer work? What about your dreams? What about your goals? What is this new diagnosis? And another one and another one as a result of Rheumatoid Arthritis Disease. What the hell is happening here? Friendships and relationships change. Marriages change. You’re too young for this. You were thinking about enjoying your retirement…without pain. What do we do now? Why me? I am sick of hurting. Can I have a day of no pain???

The matters of the universe swirl in your head and the weight of the world is your shoulders. The impact of RA on your mental health can be devastating. It was for someone like me who was already an emotional human being who has lived through some very tragic moments. Now what? Another thing to hide. Another thing to deal with privately. I don’t want people to know I am depressed. I don’t want people to know I am anxious. I don’t want people to know I stand on the ledge of suicide. They will label me weak. And you don’t want to be labeled weak in the African American community. Or crazy. We associate mental health issues such as depression and anxiety as “crazy.” Ah, the stigma.

What do I do? How do I deal with the mental impact of RA? I try to take it day by day. I put on my brave face and walked boldly into the psychiatrist’s office, the one that has a brown face like me, and I said “I am sinking. Drowning in this sea of emotions and pain. Help me.” And then we went to work. Because seeing a therapist is WORK. A good therapist, psychologist, or psychiatrist, knows the tools you need to cope with life’s tragedies. It does not, DOES NOT MEAN YOU ARE WEAK, it means you are smart to seek help. And those who say you are “weak” or “crazy’ are the ones who are in need of help and don’t even know it. I use the tools my therapist gives me. Daily.

I practice yoga to help mind to focus on what is right in front of me.  It helps me to control my breathing. It helps me to control my thoughts. It helps to keep me in the now.

Meditation. Get you some. It helps me to see into myself. I can assess myself. I can create my future. I can pinpoint in my body my issues.

Prayer. It is my lifeline to my Source. It is how I talk to someone, when I can’t talk to anyone.

A personal relationship with the Creator (yes Source, yes God and not the God of this or that religion, but GOD). A deep, committed relationship, a bond, a sealed union. This relationship gives me strength. It empowers me. It serves me. It is my refuge. It is my stronghold. It is a friendship, a parental relationship, that has stood the test of time with unconditional love…mostly on God’s end. God has never wavered in love for me. Even as I tossed and rolled like a raging sea.

All of these things keep me grounded and honestly, above the ground.

~Nikki

#rablogweek2017

rabadge2017

Peace and Plenty Notes 1

 

IMG_20170413_075708_898

As you may or may not know, the journey I am taking this year is a journey of liberation. The actions I am taken at the age of 42 are legendary. I have linked this with an angel number and the legendary Jackie Robinson. Well, on this journey I have books to help me and one of those books is Peace and Plenty: Finding Your Path to Financial Serenity by Sarah Ban Breathnach. I want to share some of the journey with you in hopes it will help you along the way, too.

71LkZ+bcTxL

~Nikki