Keep Out. Only God & the Experienced Allowed.

ce37d8e71cb383beb7220a3c76d27555

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

 

Advertisements

Creative Confetti. Fashion Confetti. Learning At My Own Pace.

Here are a few of the things I have crocheted for the fall and winter 2017-2018. I thought I would share! I am getting better. Above is a chain scarf/necklace with a flower.

The one on the left is a shawl I made for breast cancer survivors. The one on the right I a shell stitch scarf infinity scarf for a sorority.

The peaches and cream ear warmer headbands, the beautiful brown button up cowl, and the fall green infinity scarf.

I want to do some crafts festival this year. I hope I can sell more items. I did really well for a beginner this fall and winter. My new goal is to perfect my sewing and do what I really want to do….create fashion! Practice makes perfect and as I realize I can do it, I just have to do it differently because of my ailments, I feel more confident. I haven’t decided how I feel about that or if it’s worth it. When I feel confident, I feel optimistic. So this Spring will me more of me learning to sew. I still have some learning to do with crocheting and knitting. Here a little there a little…learn.

~Nikki

Happy Saturday!

RA BLOG/Anxiety: Walk With Me

d2f78874e93667e18a7ed89e3f9383a3

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.

6dc6075e62a87557cbefdc64b14aa1ce

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…

5957a965390079e4e5f5f3d8270d7c1d

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

 

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: Crochet One

What have I been up to? I taught myself to crochet a few months ago. I really enjoy doing it and it may take me longer to complete a project because I have Rheumatoid Arthritis and Fibromyalgia. The good thing about this is that I can take my time and go as slow as I want. I can work on something when I feel like. I can do a little at a time and I sometimes I wear my braces for my carpal tunnel or my compression gloves. It’s difficult to work with those on but, it helps the pain and I do sleep in braces. Anyways, I just want those of you who have may issues with your health to be encouraged and to try the things you thought you would never be able to do. I am not a clock and I can rest my hands or go days without crocheting. Here are few things I have made. Oh and that’s my beautiful cousin modeling!

 

23844545_10156894505318266_2077937087178203261_n
Super Infinity Scarf

23905342_10156894505323266_8540615447385306135_n

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: 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