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.

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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.

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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!

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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!”

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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

 

 

 

 

 

 

 

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Sunday Morning Coffee Musing: What You Have Need Of

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You’ve been blessed with an inheritance, a lump sum of money, you won the lottery, or you have a good job or career and have managed to put away for retirement. Yet, you worry from time to time or constantly about the future and if you will have enough. Maybe, you are young or old, have a large family or a single parent, and you are doing the best you can. Let me tell you briefly, about my situation.

I am in my early 40’s, approaching my middle 40’s ha! (No, I don’t look it and thank you!) Well, I happen to become ill, could no longer work, blew through my savings to survive and raise a daughter that will be graduating from high school next year. I found myself in the disability process for three grueling years. I won my case. And I thought it would be a sigh of relief and it was. However, like any person that has to start from a setback, start from rock bottom, I worry. But and on my anxiety and man, it takes on a whole other form or worrying. How can I make it off this? What will I do when the surplus runs out? Will my other dreams ever take off so that I don’t have to be on disability? What happens in 3 years when I go for a review? What if they say I am okay and I don’t need it? What kind of job will I be able to do at 46 with my illnesses? Will I ever get the home I want? You see where I am going and then loop that in your head all day. That is anxiety. Go to bed and wake up thinking about the same thing.

This morning I heard this in my spirit, “There is no sense in worrying about tomorrow. Tomorrow has enough trouble of it’s own. You can’t add one day to your life by worrying.”

And then I thought, but don’t you have to plan for the future?

Spirit:”Be wise like the ants. But they don’t worry. And consider the birds in the air, the are fed everyday. The flowers are clothed and they don’t worry.”

Me: “But, what about my dreams, and goal, and plans, and life? What about that abundance? What about prospering? I don’t want to struggle until I die!”

Spirit: “God knows the plans created for you. God knew you before you existed in the womb. God molded and shaped you. You are carefully, and wonderfully me. The Creators plans for you are to prosper and to be in good health. You have choices. Choose life. Choose the things that will better you. Go for it. Do it. Be wise. Use knowledge. And God  knows the number of hairs on your head. Not one falls without his (her) knowledge.”

Me: Let me blog this and hope it helps someone else.

God, the Creator, the Universe, knows what you have need of. God’s plans are always for you to triumph, be at peace, be in good health, and to prosper. But you do have to do your part and if you’re doing your part, researching your part, then do not worry. God will do the rest. The Universe is working for you, always and never against you.

~Nikki

RA BLOG:My First Vendor Opportunity & How I Coped, Lessons Learned

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Saturday, I had my first opportunity as a vendor for my crocheted items. It was an awesome opportunity to gain experience, meet new customers, and network with other vendors who are also African American. It has nothing to do with exclusion, but it has everything to do with building and creating opportunities for crafts, small businesses, exposure, and financial gains for businesses that are often overlooked or unheard of. We are also able to keep each other informed on bigger craft shows and opportunities to support each other. This is a plus for ALL women as we began to included each other and support each other’s ventures. Friendships and partnerships are often made.

 

My next vendor adventure will be a very big one at the Colonial Park Church in my city. It is a Fall Festival I have always known about before I began to crochet. I have never been, but it’s a family friendly event that involves the entire community. Needless to say, but saying it anyway, I am anxious about it. I was very anxious about the one I did yesterday and nervous because it was my first time. I was filled with doubt and prepared myself that if I didn’t sell one thing I had at least taken the first step. I had no idea how to set my table up so I reached out to other crafters, women from all over the world that gave me tips, shared pictures, and some that never did a craft show but wanted to wish me luck and pray that I sell boat loads as one said. I did sell some things and I was pleased with the outcome! I was pleased to network and purchase from two other vendors. I was pleased to meet new customers. I was pleased that I was offered more opportunities. I am now less anxious about next Saturday. I had to talk to myself the entire time I was on the way there. Therapy helps. I used the tools I was given and was able to calm my anxiety.

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Afterwards, I had to pack up and get things back in the car. Here is where RA/RD and fibromyalgia is major factor. Well, that morning I had no help to load my car. My daughter was with her father. When I arrived, I had some help getting things out, then I had to set up on my own, break it down on my own, and I had help loading my car. But, when I got home, guess what? I had to take some things out and the other stuff is still in there. My body was so sore and achy BEFORE I even left the event or began to pack up. This was from just loading up everything to get there. Needless to say, the rest of the evening I was incredibly sore and I had to take pain medication for my pain. Sunday, was a little bit better and today is much better physically except my hands are still achy and I have been having some shoulder and back issues before all of this. BUT, I am so proud of myself to push past anxiety, my shyness (believe it or not), and put my side hobby out there. And it helped to have the support of a crafting community, friends, and family that cheered me on. This one reason I try to cheer others on. I know how important it is.

~Nikki

 

Sunday Morning Coffee Musing: Someone to Take Care of Me

 

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I am tired. I am worn. I am wounded and run ragged. It turns out that I am human. I know it. Does everyone else know it? It doesn’t seem like they notice I am burned out. Is it not obvious from the flame coming out of my ears? What about the way my body moves in the early mornings and late nights? Can they tell? Do they care?

It has been a very long two weeks. I’ve had very good days, but more bad days and a few very bad days. Yesterday evening was a very bad day. I have not had much time to myself and I am not sure that is what I need. Anxiety seems to pile up and heap on top of me at moments of financial decisions and the future of my well being and as my daughter’s graduation from high school slowly approaches. I worry about my mother who has obvious issues to me, but none to my siblings. I get angry about my father’s Parkinson’s Disease. I cannot sleep and when I do it’s not as restful so I take a sleep aide and I sleep too long (even with it spit four ways). I have not heard back from my therapist as I have missed an appointment. I call, I leave a message, and silence. I have been journaling nothing but frustrations.

Yesterday evening after an outing with my mother who is very high strung and nervous like, after taking my daughter to and from ACT prep, taking her to and picking her up from a birthday party, I was in very bad shape. I called my mother and told her I would not be at church tomorrow. I do not want to go anywhere, do anything. I am tired of everything. I told my daughter she could get the dishes. Fix her own breakfast in the morning, fix lunch and dinner for us. Also, said I wish I had someone to take care of me. What about me? Yes, unselfishly, what about me? Oh, the Lord will take care of you. I know that. Do you know that I am not talking about that? I would like to be taken care of and not because I having a melt down, but because we all want to be taken care of in times of trouble by another human being instead of always being that human being who does the “fixing” and taking care of.

~Nikki

Morning Routines: Mind & Spirit

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It started Wednesday with excruciating foot pain, but if we want to be honest it started way before that. It started with taking on Vocational Bible School when I really didn’t want to and doing most of it on my own with the nitpicking, complaining, and subtle “bitching” of others. Yes, I did use the word bitching and I could have used barking, but IT’S NOT ABOUT YOU AND YOUR COMFORTABILITY right now. I also had little sleep due to the oven light going out which we usually leave on. I discovered it has a shortage. Then the smoke detector went out. There was a power outage in the wee hours one morning on top of a night I was already tossing and turning. I didn’t want to take a sleep aid because…what if the house caught on fire and the smoke detector doesn’t work? (I have anxiety and this how the anxious mind goes into overdrive). I was thinking about all that I had to do. Major issues with my mother and minor ones with my sister. Drama and trauma.

So, I try to sleep better last night and I was irritable before I went to bed. Oh, and someone stole my bank card from church! I tossed most of the night and when I finally woke up it was from a terrible dream.

What am I doing wrong? What is going on here? Good things are happening and all of these inconveniences are also happening like the gnats that seem to have invaded our area. Small and irritating as hell. I had a great therapy session last week. What am I missing?

I am not centered at all. I am not thinking clearly and it is showing up. I have been fearful, angry, and peace-less. Fearful of the future, fearful of walking in purpose and marrying my authentic self to my purpose. Angry at the things said and done by family. Peace-less about a future relationship.  I am overwhelmed by household chores (tired body, achy body, little to no help, and a teen with lazy summer bones) and wanting to have a gathering, but not really wanting to be bothered. I  am missing intentional and thoughtful prayer. Meditation. A morning reading. Yoga. Either one or all of these things would do me a world of good because I need centering every day and sometimes several times during the day. I am missing the voice of Spirit and Self. I am ignoring it. And my body, my mind, is fatigued.

This morning I pulled myself up. Opened to a passage in the book: God’s Healing Power: Finding Your True Self Through Meditation where the above excerpt was pulled. I had breakfast. I watched a food documentary. I still don’t feel well. I wanted an instant fix. I still feel overwhelmed. I wanted energy. This is the beginning, Nikki. The RE-establishing of routine. It’s going to take some time and patience and effort. I think I will read this same passage every morning until…

~Nikki

 

 

Keep Out. Only God & the Experienced Allowed.

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It’s down right ugly the mood I am in. This war in my head and heart after my second hearing this year only to have the judge subpoena more records and a test to prove worsening conditions. I thought we had what he wanted. I thought we had enough. My anxiety was already through the roof and I’d had a panic attack before I even arrived this morning. I thought it was going to be over today. Needless to say, I bolted out of there and cried like I needed to in the car. I am so very tired. Over three years of struggling to survive and to stay sane.

I trusted God as I have throughout this process. It seems as if we were nearing the end. I feel like the rug was pulled away from under me. I feel heavily disappointed. Angry. Pissed. Exhausted. But, not defeated. I feel as I want to pull away from the rest of the world and at the same time I wish someone would console me. But, I don’t want them to see me crying. You know, crying in this world is a sign of weakness to most (NOT ME) and it makes people uncomfortable (NOT ME). In my not so humble but, honest opinion the only reason people feel that way is because they feel weak themselves when they cry and the are in fact uncomfortable with their own feelings.

So, here I am. Weary. Wounded and Sad. But unwilling to stop trusting God for a favorable outcome. I am confused. I don’t know why all of this has happened to me or is happening. I do know I did nothing wrong. It was not because of sin (rolls eyes). It just is a part of my journey. My story. So, as I try to figure out how to keep the lights on, pay for a cavity fill in my insurance doesn’t cover, pay my rent, pay other bills, and STILL be pleasant to others, I have to feel what I am feeling. I have to go through the thicket that has thorns. I remember the sticker bush at parents house and getting knocked into it playing or trying to hide and having to squeeze through it and another bush. No matter how you tried to get around or through it you were scratched up. There is just no way around pain sometimes. Only through it.

~Nikki

 

RA BLOG/Anxiety: Walk With Me

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It’s Saturday evening and suddenly things begin to spin out of control. I am flustered. I can’t breathe. I am becoming irritable. I have things to do and many of those things won’t get done. I have only been gone for 4 hours and it feels like I have done a full day of labor. I hate Rheumatoid Disease and Fibromyalgia. I am frowning and I remember I took a prednisone pack and this has the propensity to change my mood dramatically but, no, no that’s not it. Thoughts swirl in my head. I am dropping things, the door jams, I curse, I get into the house and I see things are getting junky, I am angry that I seem to always run out of energy before I run out of time.

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When I worked for an adult mental health agency there was this phrase said to a patient after a “meltdown” subsided in order to move the patient from one area to a calmer environment. That phrase was, “Walk with me.” After I made my sandwich I sat down and I took a deep breath. Why are you so angry? I asked myself. It’s because I am so tired and I was thinking in the car not only about being fatigued, and all that I needed to do but, also about my current situation and what will I do if…you know…things don’t work out. Where will I stay? How will I survive? I started to imagine myself broke down like those who sacrificed their bodies to provide for their families. I felt sorry for them and then I thought they were mothers and fathers with illnesses, too. I thought about how sad and depressed I would be. Then I started to get angry with God for letting that happen even though it has not happened.

Walk with me…

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I ate my sandwich. I saw this photo I saved and I thought there is where I want to be at the end of days like this. Walking on the beach at sunset. Sending all of my thoughts and cares of the day on the waves. And then what would you do?

I would no doubt feel peace. I would return to my beach home and prepare for the night and the next day (Sunday). What would you cook? I asked myself. It surely wouldn’t be a lean cuisine warmed in the microwave. I would make a salad, pan sear some salmon, steam some veggies and pour some strawberry lemonade. Sounds good.

Walk with me. If you can steady your thoughts by steadying your breath and just take a mental walk somewhere else. Find a photo of where you would escape to and just imagine what you would be doing. So, as I came back to present, I decided on what needed to be done and what must wait. I feel so much better I didn’t go into a full anxiety attack or need the inhaler or remained frazzled and angry the rest of the evening.

#Expansion2018

~Nikki