Dancing with My Disabilities!

Title: Dancing with My Disabilities! I had my shoulder and both hips replaced, and I am changing things up a bit on this blog! I began belly dancing in 2009! Yes, you read that correctly!! I am going to be blogging about my experience as a woman with several joint diseases and conditions who had her shoulder and both hips replaced and now belly dances, dances hip hop, performs, teaches dance to children of all ages and abilities, teaches belly dance fitness classes to adult women, teaches chair belly dance movement classes to people with mobility issues and disabilities, and takes a Pure Barre class as well! I still have pain, but I want to blog about how I have fun too! Please read Chronically Mommy (chronicallymommy.blogspot.com) for info on health/pain and being a mom to a now 15-year-old son. I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, axial spondylitis, Sjogren's, fibromyalgia, hEDS, POTS, MCAS, vascular/ocular/hemiplegic migraines, pseudotumor cerebri, trigeminal neuralgia, occipital neuralgia, endometriosis, and chronic shingles. I found out that I have autoimmune arthritis in my cervical spine and a bulging disk in my lumbar spine. Fourteen years ago, my spine orthopedic surgeon told me I had a small amount of inflammatory arthritis in my SI joint. I now have more radiographic proof of axial spondyloarthritis. I had my left hip replaced in 2003; my right shoulder replaced in March of 2010. I Already Gave My Right Arm to Be Ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012, and I began belly dancing three years prior to my right hip replacement surgery. Now Read My HIPS! Yes that's correct! I began belly dancing in 2009, just after my shoulder replacement, before my son was born. I performed for the first time in 2012, five days prior to my right hip replacement surgery. Pain is still another part of my life. It is just a question of when, where, and how much, but I would like to use this blog to write about my experience as a woman with several joint diseases and conditions who had both hips and a shoulder replaced and now spends her free time dancing, teaching, and performing! I began dancing with a troupe in February of 2014, Seshambeh Dance Company. I now take a Pure Barre class on Monday mornings, teach ballet, tap, and creative movement on Monday evenings to children of all ages and abilities, take a hip hop class with all adult women on Wednesdays, teach a belly dance fitness class on Thursdays to all adult women, and teach a chair belly dance movement class to people with mobility issues and disabilities as often as I possibly can. Join me in my journey! At times, I take 16 to 20 pills a day. I give myself an injection each week on Fridays for my autoimmune/autoinflammatory arthritis diseases. Just when one thing is doing better, something else goes downhill! My attitude, however, is always going uphill! I am 51 years old, have been married for 25 years, and my husband and I adopted Mick in Dec. of 2010! I have a lot on my plate right now, but I take it one moment at a time. I believe that God will never give me more than I can handle. However, I do need to learn to ask for help sometimes instead of always doing it by myself!

Blog Title: Dancing with My Disablities!

Formerly Now Read My HIPS, and before that, I Already Gave My Right Arm to Be Ambidextrous.

Blog Title: Dancing with My Disablities!

Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these daya are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me, help me, help me, oh.

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Sunday, August 21, 2011

Patients for a Moment Wordless Wednesday

"Words tell part of our story as we blog, but pictures often complete that story.
So instead of words, I would like to include photographs of life with your chronic condition(s) to create a Patients for a Moment Wordless Wednesday on August 24."

Each day we do so many tasks. How many things do you do in one day that involve the use of your hands? Imagine being unable to move or grab things because of intense pain, stiffness and inflammation...











Before and after my hip collapsed and was replaced, I had to use a cane to walk with. Yes young people do use canes...
Shoulder replacement surgery is not for the faint of heart...



Atlanta's Arthritis Walk. You should be an activist for your cause...

With Psoriatic Arthritis, when my psoriasis flares, it isn't pleasant. It is red, flaky, itchy, painful, scaly, and often on my scalp, neck, ears, eyebrows, elbows, knees, hands, and face (which is not a common place to get psoriasis). It is hard to hide the psoriasis rash on the face, even with make-up because the skin is so dry and even peels. It can be embarrassing because people stare and think it's contagious...

Every 4 weeks, I get an I.V. for my Psoriatic Arthritis/Spondylitis...

Healing takes a while after surgery when you have an auto-immune disease...

My tendons tend to become inflamed and sore. It makes it especially hard to move...

The fatigue from all of these & fibro is overwhelming...

Thank God for my wonderful support...
 S
 C
 A
 R
 S
from surgery. Even a black eye after surgical removal of a tear duct plug and draining of duct due to Sjogren's complications...


I take 16 to 20 pills per day...

and vitamin supplemts...

Saturday, August 20, 2011

Weathering My Chronic Body's Storms!!!

Time for yet another MOWer's blog carnival post.

It's interesting how people choose to use weather terminology for everyday occurrences.
Your room looks like a tornado hit it!
The bathtub overflowed, and now the bathroom is a flood!
The dog devoured everything; looks like a cyclone tour through here!
That child is as mean as a tsunami hitting land!
Those birds were like hail as they pecked at the roof.

OK, you get the idea. I hope. I could go on and on. So if we could talk about anything in our daily lives so descriptively like it was something to do with the weather, imagine how we could describe our bodies. I'm not just talking about any bodies. I'm talking about weathering the storms with chronically ill bodies.

Our bodies with chronic illness go though so much and weather many, many different storms. Today, as I sit in the infusion center getting my Remicade infusion, I can tell you that my body has been through storm after storm and so many other weather conditions: rain, hail, sleet, tornado, cyclone, tsunami, blizzard, flood, torrential down-pour, icy roads, slick sidewalks, clouds, excessive heat, thunderstorms, earthquakes, windstorms, breeze, sunshine, clear skies and rainbows.

It's interesting too because so many people with chronic illnesses, especially pain and joint conditions, put the blame on different weather patterns for how they feel day to day. Many say if the barometric pattern changes suddenly so does the pain, or if it drops or rises, so does the way they feel. For me, if the pressure drops below 30, I know it. I have pain and fatigue and general malaise. If it rises above 30, I feel out of it, and my sinus pressure tends to increase. But I also feel it in my bones if there is a sudden increase or decrease in the pressure. I like to consider myself a human barometer because my body will let me know just before the pressure is going to rise, fall or change dramatically. Many times that tells me when a storm is on its way, when the humidity is coming, etc. I also don't do well with increased humidity and precipitation, which many times happens when the pressure drops or rises. The body know!

So enough of the literal, actual weather correlation, let's talk about my body. How have I weathered my own storms?

RAIN

When it rains, it pours! With my body, I can start with just a little cold or allergies, and it is never anything little. Just these last couple of weeks, my allergies have been fierce. I began to cough from the post nasal drip, the coughing got worse and worse, and the pain increased. How can coughing be painful? It's painful with a little thing that turns into a bigger thing called costochondritis. It is an inflammation of the connective tissue that attaches the ribs to the breastbone. In my case it involves more than just that but also the rest of the rib cage in the intercostal spacing. Every time I take a breath, it hurts. When I have a bad cough, it really hurts because the deep breathing is nearly impossible. I thought I was winded from my asthma, but it turns out I was feeling this way because I wasn't allowing myself to take a deep breath. It hurt too damn bad! Who knew that joint diseases could be such a pain! Ha, I made a funny! Of course they are a pain. I mean a pain in areas like breathing. Well, they are, and people need to know this because if you have costochondritis, and you get a cough with it, it not only rains, it pours. You are looking at torrential downpours, my friends!!!

HAIL, SLEET, ICY ROADS AND SLICK STREETS

Hail and sleet, to me, is when my body is bombarded in all areas at the same time. It happens a lot, unfortunately with chronic pain conditions. Just recently, I was driving down the road and realized I couldn't move my right pointer finger. It was stuck, swollen and red. The pain was unbearable. Now, I know what you are thinking, "Pain in your one finger? Big flipping deal." Well, the pain was cruel. My joint pain isn't just like when you stub your toe, people! It is always real, absolute, moderate to severe pain. I never complain though, I just use it to educate people about chronic pain. So I had to drive with my other fingers. Later that day, I realized the way I was holding the stuck finger, started making my wrist hurt. It began to swell and get painful and swollen. Then my wrist was stuck!  As the day progressed, my elbow stuck, was swollen and red! Then the other wrist and elbow were swollen. Then my knees were red and hot. Then my ankles were both swollen. Then the bottom of my feet began to hurt so badly I could hardly walk on them. I could hardly move. I was worried earlier that day about driving. It was hard to turn the steering wheel. Now I couldn't walk to the bathroom from the couch. It was my body weathering yet another storm. It was sleeting and hailing, and it was attacking my body alone in the middle of a hot July summer! I was driving my car on icy roads and walking on slippery sidewalks, and it was dry, sunny and super hot! Can you even imagine?

TORNADO, CYCLONE, TSUNAMI, HURRICANE, FLOOD

I woke up knowing that I was getting a migraine. I have aura's that tell me one is coming. When I have a migraine, my fibro flares. I don't really know why, but it happens with me. It never fails. With my fibro, it makes it so difficult to get up and go. The fatigue is overwhelming, and it is so hard to do anything that is just the everyday stuff~get up, get dressed, take a shower, and mommy stuff~so I find it impossible to muster up any energy to exercise, even just to take a short walk. So I will just stay on the couch all day and set my son up next to me. Not moving around will make me so stiff and sore, and one by one, my joints will flare up. The psoriatic arthritis will flare. On a particular occasion that this happened, I also wouldn't eat or drink enough, so the Sjogren's symptoms flared~my eyes, mouth and nose got extra dry. I then got sores in my nose, and mouth. I had to see my cornea doctor because my tear duct was infected from getting too dry, and I had to have the tear duct plug surgically removed and the tear duct drained. I had to go to the ENT, and had to have my nose cauterized because it wouldn't stop bleeding from being so dry. Then my psoriasis flared. The scalp psoriasis was the worst. I was even losing hair. My bowels were messed up and I had to see the GI doctor and have a colonoscopy scheduled...I had weathered my tornado, cyclone, hurricane and tsunami. Then there is the flood. There is so much to wait for after so much has happened at the same time to your body. It takes a while to recover. Imagine the clean up after these storms! It can take so long to feel better, and then to get back into normalcy again. The flood waters do go down, but it takes time.

BLIZZARD, WINDSTORM, EXCESSIVE HEAT

One day my bones literally feel like they are so brittle that they are barely surviving a blizzard, and have frozen solid, that a windstorm could blow through and break every single one to pieces. Other days my body feels like it is in an oven on broil, and I am overheated. With many auto-immune diseases, we run fevers that are caused by unknown factors. Mine occur usually at night before bedtime or while I sleep. I sweat and get chills just as though I were sick, but it is all part of my auto-immune illness. How my body can burn up from such excessive heat like that; it's like when they talk about heat warnings and heat alerts in the summer time! It can happen any time for me, even in the middle of winter. What I find so crazy about this is that my body is burning up from excessive heat, yet my bones feel like they are stuck in a blizzard with windchill factors below zero. The bones are so sore and achy that it reminds me of being out in the cold, and shivering, but I'm hot! If a windstorm knocked me over, I would crumble! Are you picturing the imagery here? I hope you are.

EARTHQUAKE

An earthquake is such a great word to use when referring to my body. I have all these little fault lines throughout my different joints, well it was 6 in all but 2 were already replaced. My hips, knees and shoulders all have Avascular Necrosis. Because the blood supply doesn't reach the joint, the joint dies, then collapses, and then the only thing left to do is replace the joint. When you look at the affected joint on an X-ray or MRI, there is a crack or line that resembles the letter "C" that goes through the middle of the joint. That is my fault line. After a while, the weight-bearing joints especially, can't take the pressure on the joint anymore, and collapse and crumble. I had my left hip collapse in 2003 and my left shoulder collapse in 2009. It's actually strange that the shoulder collapsed before the the other hip and the knees since it isn't a weight-bearing joint. But basically, it's a similar idea. I couldn't carry anything around anymore on that joint, I couldn't lift or push with that arm anymore. Then one morning, I woke up and I could move it no longer! It had collapsed. These joints move at the fault line and collapse, their own version of an earthquake. So now I have to wait for each one of the remaining 4 joints affected with AVN to have their own earthquake, probably at separate times, and most likely unexpectedly. I have small quakes, where the joint moves just so slightly at the fault line, like if I go from a sitting position to a standing position, vice-versa, or if I sit for a long time, or if I exercise and move around an excessive amount.  I have endured 2 large earthquakes, and will endure 4 more, unless the AVN spreads to other joints, then possibly more, and I will endure small quakes daily for many, many years. Ah, a wonderful picture~sarcasm!!!
CLOUDS, BREEZE, CLEAR SKIES, SUNSHINE, RAINBOWS

We all have bad pain days, and we all have better pain days. I can't say that with chronic pain we ever really have good pain days, but we can have good days.  I consider days that have less pain cloudy or partly cloudy, and sometimes during that day, the pain is even less, so I see that as a nice breeze that blows by. If the breeze blows hard enough, then there are clear skies. When there are clear skies, these are days that are definitely better days. I can do more stuff, like make dinner, and exercise, etc. Then when there is sunshine, well those are the even better days where I can do stuff that I like to do not just want I need to do, like dance and swim, and play more with my son. And then there are the rainbows! Yes, you don't see rainbow days too much. If I had to call a day a "good day" for a chronic, I'd call it a rainbow day. These are the very rare days when I can catch a movie, go shopping, take a drive somewhere. These are harder now that the psoriatic arthritis has started to involve the spine~spondylitis. I can't sit for a long time in the same position or stand for a long time. Exercise helps a bit, but if I am flaring, it's hard to start exercise. I mostly look forward to partly cloudy, breezy, clear sky days. Sunshine and rainbows I dream about!












Saturday, August 13, 2011

Significant Other~Will Never Your Eyes, Soul, Heart Forget!!!!!

For this MOWer's blog carnival, we are to blog about our significant other.
When I first looked into your eyes,
I knew you would hold my hand.
On our first date, you looked in my eyes

and said, by my side, you would stand.
How did you know already that you loved me?

How did I know that you would never leave my side?

The eyes are the windows to the soul, you see, 

and we gave each other our souls as we met with our eyes.
When you told me you loved me,

I already knew

that I was in it for the long-run, sweetie!

Because I Loved You too!
Unfortunately, you were in it too,

and your long-run was quite bumpy.

My life ended up quite chronic and way too true!

When you said "will you?" you also got my chronic pain~crummy!!!
I said yes! without a thought.

I know you had at least one or two...

There hasn't been one struggle that together we haven't fought

because we are soul mates, and that is what we do.
For richer, for poorer, in sickness and in health,

If only we knew how hard it would be.

I never wanted wealth,

but one day with no pain would be SWEET!
You have made each day a little better,

and each night with less pain,

You have made me able to write this letter,

and given me a kiss that takes all the bad away!
Do I take you to be my husband?

Yes, yes, yes!

I would do it again and again.

You have kept me from becoming a complete mess.
You have taken on so much

from helping with our home,

to cooking without a fuss,

and most importantly--being my caretaker/caregiver all on your own.
You bathed me,

shaved my legs and washed my hair.

You help with our baby,

and you always care.
I have had surgeries,

even replaced my joints.

You have taken me for I.V.'s and helped with injuries,

and you have always been there, which gives you brownie points!!!
I will say "I do" again and again,

I would hope you would too.

In this relationship, I win,

but I hope that you would also again and again say "I do".
I hope that just because my body is falling apart,

you will always know who you met,

when you first looked into my eyes, into my soul and saw my heart.

That person is still there and will never your eyes, soul, heart forget!!!!!




Tuesday, August 2, 2011

I Click My Heals Together Three Times...There's No Place Like Home...There's No Place Like Home...There's No Place Like Home...And I Find My Happy Place!


"We've all heard the expression 'Find your Happy Place.' That may be a tough thing to do as a chronic chick. So this edition of PFAM asks 'Where's your Happy Place?'"

I could easily say my favorite place to go is the ocean. I love the beach and the sound of the water as the waves hit the shore. It is peaceful and relaxing. I could also say that I enjoy walking through a particular park in St. Louis. I love the neighborhood that surrounds it, and it reminds me of when I was younger, meeting my husband, and starting my life as a young adult. I could also say that going to the aquarium in Georgia & Kentucky calms my soul. I have mentioned before that I so loved to dance, so anywhere I could dance would certainly bring out that passion.  Of course, I have yet to mention the one place where I truly find HAPPINESS.

I don't have to go very far, you see...

The best part about this place is that anyone can go there, you don't need an invitation, you don't need a plane or a car, and you never have to leave your living room!!! That's right. My Happy Place is a state of mind! I can get there when I am having a relatively pain free day and have friends to share laughter with, or if I'm having a painful day and use humor and laughter to simply release endorphins and make me feel better. They say laughter is the best medicine. Well in this case, laughter, humor, a comedy, a joke, the newspaper's funny pages all can take me to My Happy Place.

I have learned that every single day it is important for me to take the time to think about the important people in my life and anything else that God has blessed me with in my life. No matter how badly I think I have it, there is always something I am blessed with. It is never helpful for me or anyone to focus on the negative, but sometimes we do get stuck in funks, especially when we suffer from chronic illness and pain. If everyday we take that time and focus on the positive, like me you just might find that it helps you get to your Happy Place much easier. It makes since. Doesn't it? When we concentrate on the positive, we are happier than those who dwell on the negative.

It might even help if you take it a step further. You could actually write a thank you letter to someone who has helped you out significantly. You don't even have to actually give that person the letter. Just putting those words down on paper or typing them out on your computer will amaze you.  Expressing gratitude shoots the happiness quotient up a notch! Afterward, I'll bet you even stay in your Happy Place longer than if you didn't write the letter.

I have found that finding My Happy Place is easier when I am doing something that I love. I enjoy many different things so I am extremely fortunate to be able to get to My Happy Place often. Writing and blogging, painting, dancing, swimming, and meditating are just a few of the activities that I love to spend time doing. So when I'm able to have fun doing something I'm good at, I'm at My Happy Place in no time. What's better is that one of my strengths is social connection. Given the chance to interact meaningfully with other people and practice self-expression, allows me to choose hobbies that involve others. I get to meet lots of different people, and many times I can do it from home, even online. So how great is it to be able to go to My Happy Place when I'm online, say chatting it up with my facebook friends or other social network buddies who also have chronic illnesses, who are also looking for a social connection, to interact with someone and find their Happy Place!

Finding the time to volunteer, donate my time, do simple acts of kindness, and just being generous basically adds up to doing good to others. I feel that is extremely important to getting to My Happy Place quicker. Ya know why? Well, it raises the happiness factor. It just does. You give to others; you are happier. Therefore, you reach your Happy Place much faster than if you didn't do good to others. Simple!


Mostly though, I am able to get to My Happy Place with my little family. I just have to sit in our sun room with baby toys spewed all over the floor, my hubby making funny noises at our son, my son sounding like a pterodactyl screaming, my dog licking the food off my son's face, and me~well, I am just in awe!!! Yes, this is what I always wanted! I always wanted this! Believe it or not. I prayed for this.  Who wouldn't want a child that sounds like a pterodactyl, a dog that keeps their kid clean, and a hubby who sounds just like the baby!?  It is exactly what I pictured My Happy Place to be. When I'm here at my home, and in that "Happy Place" state of mind, it's a relaxed, calm, peaceful kind of happiness. But whenever I am away from my home and want to go to My Happy Place, I go here to the sun room with the toys and the kid and the dog and the hubby!

These are my steps to getting to My Happy Place since you can't get there by car, plane, train or boat. You have to train your brain. This is how I do it. I hope it helps you. I hope that you can enjoy your Happy Place as much as I enjoy mine. I hope to meet up with you sometime. Perhaps our Happy Places will cross paths.
  1.   First, I decide, "Do I want to be happy right now?"
  2.   If the answer is yes, then next, I tell myself that I have permission to be happy.
  3.   Then I understand that I am in control of my own happiness.
  4.   It is OK to feel my own feelings and to laugh.
  5.   Focus on the positive.
  6.   Show gratitude.
  7.   Focus on my strengths.
  8.   Interact meaningfully with others.
  9.   Do good and be kind.
  10.   Live in the now~find My Happy Place!

2012

2012
Performance 5 days before my Hip Replacement Surgery!

2012

2012
Performance 5 Days Prior to my Hip Replacement Surgery.

Belly Dance

Belly Dance
Before the Performance 5/6/12