Disability and Reality Head on Collisions

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If you have been following my blog, then you know I am real, honest, and sometimes raw about what I think and how I feel. I am not here for the shock value, I am here because I love people that are honest about their thoughts, feelings, etc. Honest, not rude or mean or nasty. Just the plain old truth. So let’s dive in.

I hate being disabled, but I am grateful that I won my case. I hated my last job, but I was grateful that I had one and it could provide some income. I wasn’t making much and that job was killing me on every level. Yesterday early in the evening I thought I was having some sort of breakdown. I was going down slowly and then boom! I was falling down a dark hole that seem to never end. I reached out for help to a friend that wasn’t available. I reached out to a professional associate, she answered and provided a rope to pull me back to ground. I realized AGAIN yesterday, just how being disabled can restrict, constrict, and confine you financially. It can halt your endeavors. It makes me angry. It makes me sad. It makes me fell worthless. It makes me irrational. It brings up things from the past and shoves them in your face. Sometimes, down your throat. I felt like I could not breathe yesterday. It was anxiety mounting up to a panic attack. And depression was hovering around like a drone.

Before this episode, I had an encounter with a relative. Then I discovered just how limited I was  because of my disability with an endeavor I was trying to start up with a friend. And there came these waves of tears in my eyes that I fought back. By the time I talked to my professional associate, I told her 1st of all, I am crying. Secondly, I am ashamed that I am crying. Crying in my childhood was often made fun of or pointed out by my mother. “She’s so sensitive. She will cry if you look at her.” I thought something was wrong with crying. I also didn’t think it was funny. So crying to me can sometimes bring up a need to apologize for crying. In essence, apologize for being sensitive and weak (according to society, some friends, and in relationships). I do know a good cry is cleansing.

Rules and regulations for disability are necessary. They keep most people from getting over on the system. However, for those of us that wish to do things to help ourselves, it’s often a challenge to figure out exactly what we can do. It’s also a shock sometimes to find out you can’t do certain things and therefore you can’t reap the benefits or joys of those things.

This morning my ground is shaky. But, I am still here. I am still fighting and coping with my thoughts and emotions. This is REAL life. This is a MOMENT that I have to work through. I am fragile in this state and I know I have to protect my mind.

“Weeping may endure for a night, but joy does come in the morning,” -Bible

I am really ready for morning.

~Nikki

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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

 

 

 

 

 

 

 

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

 

Weekend Confetti: Muddy’s & More

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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

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

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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.

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~Nikki

 

RA BLOG: A Blow to the Jaw

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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: 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