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 2010! 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 who 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 13-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. The question was if the spinal involvement was due to Psoriatic Spondylitis, which is a more severe form of Psoriatic Arthritis or is it a new diagnosis of Ankylosing Spondylitis? Now, they have an updated term, Axial Spondylitis, which fits my symptoms and diagnostic proof. Whatever the diagnosis, the treatment will remain the same. I had my left hip replaced in 2003; my right shoulder replaced in March of 2010. I gave my right arm to be ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012, and I began belly dancing two years prior to my right hip replacement surgery. Yes that's correct! I began belly dancing in 2010, 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 Tuesdays and 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 49 years old, have been married for 24 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.
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.

Dancing with My Disabilities

Dancing with My Disabilities
Asmara "Beautiful Butterfly"

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Monday, February 28, 2011

Inspiration in The Face of Adversity!


I wanted to share with my followers how important it is to be positive, to keep your faith no matter how hard life may seem, and to remember everything that we experience in life that we learn from can be shared with others so that they can also learn something from it.  No matter how big or how small our experiences are in life, some one out there will find something to take from them to better themselves or others. It can be an incredible feeling to know that one person can have such a huge effect on another, and that effect can be passed on further from one person to another.

When I began blogging, it was because my right shoulder collapsed, and I wanted to share with others my challenge and struggle to wait for it to be replaced. I woke up one morning in October unable to move my right arm because the shoulder had collapsed, and I had to wait until the end of March to have it replaced. I needed to share this with all of you to help me get through the pain, the trials of daily life, and to keep the strength and courage up to make it that long.  I am so glad that I started this blog. I have met some wonderful people online, have realized that there are so many people out there living with chronic pain conditions, and we all need each other to share our stories with to help one another to get through the rough times, to carry on. I first want to thank you all for helping me, and second I'd like to share with you all what someone told me about my story that helped her with her life experience with pain.
Thanks...you have given me inspiration as I've gone through the process of seeing doctors, even getting the second opinion about my shoulder, and getting in a place where I think I am going to get my shoulder "fixed" after nearly 8 months. I've had myofascial spasms for 12 years; we have been calling it and treating it as fibro for the past 2 (I'm on the fibro medications now for pain, and they help a lot).  I cannot imagine the arthritis pain you go through.  Your story of success after shoulder replacement surgery inspires me.  I tore 2 rotator cuffs (the top and "bottom" ones--supraspinatus and subscapularis) while stretching on a stretch bar--one of the morning sretches I had enjoyed for years.  When I got the MRI results several months later after my pain and spasm/guarding in that arm/shoulder had not subsided, I was SHOCKED to read that all 4 of my tendons that make up the shoulder joint were unhealthy, and that 2 were damaged.  I'm an attorney who helps people who have had injuries including by the healthcare establishment or MVAs--so we now laugh because when I got my MRI faxed to me at the office, someone confused it and after reading it over, said "what client is this for????"   Then we realized it was MINE!   Shocking.
Dana...I appreciate your attitude of gratitude, grace and help in the face of adversities.  I think these qualities make you a better candidate as an adoptive parent than many people out there who don't have adversities.  I say this because in my view, your comments...and your response to your health conditions overall, have been so very positive and healthy and strong.  I know you are a Christian...and I am also, so I'll just say--I think that our God is a loving God, and we live in an imperfect world of free will and accidents and all sorts of wildness and imperfection.  In this context, we experience illnesses and pain and losses that we can actually ask God to help us USE to get stronger. You have done this, Dana.  I commend you.  This is the attitude that I aspire to as I face surgery...as well as just every day when I get up and look in the mirror and say "I'm not able to walk in my own shoes today God, so help me out here, ok?  Help me turn this boat around and make it a positive ride, for myself and others, can we?"
For your information, she did have her shoulder surgery, and was recovering well the last time I communicated with her. Also, with her lovely comment in mind about my being a better candidate as an adoptive parent than many others without adversities, my husband and I adopted our first child in December of 2010. It was less than 9 months after my shoulder replacement surgery.  We are so blessed with a beautiful baby boy. He was 4 days old when we picked him up from the hospital. I have to say that my new shoulder came at the perfect time.  I have a brand new shoulder for my brand new baby! Perfect timing! Thank you, God for listening to my prayers--both for the recovery from my surgery and for our son!










Our Health Care System

(Publish date: September 7, 2010), and the theme is: Health care reform. Everyone has an opinion. What's yours? We want to hear all about your experience, what you hope will happen, what you think will actually happen. I did not enter my post in time, but I did write it. I did not publish my post though until months later due to personal situations. I have a link to the Health Care Reform Chronic Babe Blog Carnival for you to read the blog posts that were published. Please read them!


OMG! Health care reform! It is so important, and yet, I believe we may never come to a decision that will be able to help everyone equally or at the very least make everyone equally happy. I do have my own opinions on the health care reform situation. I believe that there is a desperate need for change, I believe that for those who have good insurance already it's scary for them to change anything, I also believe that for those that have no insurance or expensive insurance or the dreaded HMO's that need referrals and can only pick doctors, etc. from a list as well as for those on government aid of some kind, it is scary for them already unless changes do occur and soon. People with the good insurance that already have everything covered and can see any doctors they want, etc., they fear that changing anything will take away from what they already have. They don't want to have to wait longer than the usual wait to see specialists or to have surgery, etc. Those with anything less than good insurance fear that they may need a specialist or surgery, and they will have to wait a long time, perhaps too long, and their health may worsen or the procedures may become more expensive or too expensive to perform.  Death is feared the outcome for some of those people with chronic conditions or with a terminal condition.  It is all so overwhelming!

I must admit, I'm not the right person to blog about this topic probably. I have been very fortunate. I have been able to use my husband's insurance through his job which has not considered anything pre-existing. If I were to try to get my own insurance, I would be turned down instantly because of pre-existing conditions. I could always go on Medicare, but I fear that the doctors, hospitals and treatments would be less appealing and worse still, not as good at treating my conditions.  I know for a fact that my shoulder surgeon doesn't take Medicare, so I would not get the best shoulder surgeon in my area to do any further shoulder surgeries because of that.  I find that scary for me.  Then I think about the whole picture, everyone else. I don't think it's fair that I already get top of the line health care, and others do not. Others are still waiting to be able to go to any doctor or hospital they want.  That should be a human right to choose your own doctor or hospital rather than have your insurance choose it for you.  So for those that have never had that right, I feel terrible that I have never had to think twice about it.  For those that have no insurance at all, it would be so scary to know you have been diagnosed with a condition that will require much needed medical care, surgeries and other treatments. The financial side of that could be extremely detrimental to a lot of people.

I do believe in equal rights to all people, and health care should be included in that. I believe that there are just some things that should not only be considered privileges, but rather human rights for all people.  It shouldn't be a question whether a person can afford it or not, has a job or not, has a job that will pay for it or not, etc.  Every man, woman and child should have the right to equal health care.  I don't know that I believe it should be forced on everyone though. Of course, those same people that complain about having universal health care/insurance should not complain when they end up with a chronic illness, a debilitating illness, or a terminal illness and then want the health care/insurance that was once "forced" upon them. I think it is something that you have to think about long and hard. If you are going to turn it down, ask yourself that question, "what if I end up with a serious illness that requires me to have health care/insurance?" There is no way of knowing ahead of time what may happen in the future when it comes to a person's health.

I can say also that the idea of getting rid of pre-existing conditions is a great idea and will help out a lot of us with chronic illnesses. Many of us also have more than one! I for one have several! I have been saying for years that one of my biggest fears is that my hubby will get a job where they will not cover me, and I will be unable to get insurance on my own unless it is Medicare. With Medicare, there are several of my meds that are not covered under the prescription plan. My out of pocket expenses would be huge!

I have not read the entire health care reform bill, so I do not know everything that is on there to change, get rid of and/or add.  I can just express my opinions, concerns and fears. I am not a very political person, but I am a person living with chronic illnesses, and I am a person who is an RN with a BSN so I am educated and experienced in our health care system. I truly believe that the most important thing to keep in mind is that every change, any small addition and all things taken from the health care bill will affect someone in some way or another. If we keep that in mind, I think we will be able to come to some agreement in coming up with a health care reform bill.  I think that truly that is the only way we will ever come up with a universal and equal health care system!

Monday, October 18, 2010

The Year I Became A Zombie...Trick or Treat!

The next edition of the blog carnival will be posted on Monday, October 18. The theme: Trick or Treat! Halloween is coming soon and we started thinking, wow, medicine is like Editrix Jenni's favorite holiday. Sometimes you get treats, and sometimes you get tricks. We'd love to hear about the ups and downs of your experience. Show us the highs and lows, and the surprises!


Palms sweaty, heart racing, tremors, chest tightness, high blood pressure, nervousness, anxiety, agitation, urinary incontinence, goose bumps, rapid breathing, chills, restlessness, panic atticks, inability to sit still, nightmares, unusual dreaming, abnormal sleep pattern, insomnia! These could be the same effects before, during and after a scary movie or a haunted house. These are examples of side effects from different medications.  I figured this topic would be fitting with Halloween around the corner. When you have chronic illnesses, you have many different medications to take. With the many medications, you have many side effects. Because you have so many side effects, you have to sometimes take even more medications to counteract the awful effects. And sometimes, you can even make more side effects from the added medications to counteract those original side effects. It can become an endless cycle!





I was once misdiagnosed with depression when I went to the doctor with hip, knee and shoulder pain. I told the doctor I couldn't walk up the back steps. The doctor was thinking it was possible that I could be showing signs of multiple sclerosis. An MRI and CT scan were performed. They came back negative. The doctor told me that there were no lesions. He said that I most likely was having symptoms of depression because it can cause pain as well as the more common symptoms. I was sent to a psychiatrist and was indeed diagnosed with depression. By then, though, I do believe I was depressed that no one could figure out what was causing the disabling pain that was making me unable to put one foot in front of the other or reach above my head. I was put on an antidepressant, and at first it did nothing.  Then I was put on a different one, then another, and then another, etc., etc., etc. until I had tried every single SSRI out there. I was told that I probably needed to increase the dose. I was put on one of the many that I had tried only on a higher dose. I began to feel extremely energetic. My thoughts began to raise. My mind began to wander. My legs became restless. I felt like I was losing myself. I was getting racing thoughts. My psychologist told me that I must have been diagnosed too soon with depression. I must have bipolar disorder where I have both mania and depression. I was put on a cocktail of drugs for bipolar depression. I got all the manic symptoms under control, and basically the depression was under control too. I felt absolutely nothing! How can you feel nothing when you had been in so much pain before? I knew something was terribly wrong. I can tell you this. I hate being in pain, but I never ever want to feel "nothing" again. I got to a point---here comes another Halloween reference--where I was turned into a living Zombie. I WAS "night of the living dead." I sat and stared for hours. I could no longer drive a car. I lost my concentration so I could not even comprehend a 30 second commercial let alone a 30 minute T.V. show or a 2 hour movie. I couldn't hold a normal conversation because I didn't even feel like I was in the same room as the other person talking with me. I felt like I should have just walked around moaning "brains, brains..." My walk was more of a "cogwheel," and my tongue was stiff when I tried to talk. I even drooled slightly. What had happened to me? Would I ever get through this?

Well, I was misdiagnosed, number one. I never had depression. When I was given an antidepressant, my body had an adverse reaction to it. I had a manic episode caused by the antidepressant. I was never bipolar; the medication that was given to me for the wrong diagnosis caused a severe side effect that mimicked bipolar disorder. The medications for the bipolar disorder never helped the bipolar disorder, they only caused multiple side effects, therefore turning me into a living Zombie!

I moved away to another state. I had no medication left over. I woke up from a terrible curse! Someone cursed me and turned me into a Zombie. When the curse wore off (the meds ran out), I woke up as a whole person again. I had no depression, no mania. You know what I did have? I had a hell of a lot of pain; that's what!  Trick or Treat!

Thursday, October 7, 2010

My Favorite Hobbies Help Me Cope with My Headache Pain--Wanna Find Out How?


Hobbies are so important, and as I've gotten older, my hobbies have changed often. It seems that I always seem to go back to those hobbies that involve some sort of passion of mine. The more I enjoy doing things, the happier I am, therefore the less stressed I am, and the less migraines I tend to get. Although when I was younger, I believe my migraines were brought on primarily by hormones and other issues of my physical body not being balanced out right, I am pretty positive that my migraines in my thirties are more due to stress and anxiety. Yes, I have a lot of physical body imbalances, and I'm sure I have hormonal issues as well, but I am dealing with daily stresses that I just didn't have years ago. We are adopting a child, I have physical disabilities and chronic pain from joint diseases (aside from the migraines), my husband is up for tenure, I am going through a spiritual journey on top of my physical journey, we have moved 3 times in 8 years, I can no longer work, money is always an issue, my dogs are getting older, my oldest dog is now blind with diabetes and 3 legs, my other dog hates every other dog he encounters, we sold our house in KY so we live in an apartment, we are looking to buy a house when my husband gets tenure, and the lists goes on and on. And many of these issues were never even a thought in my head years ago, or even in my twenties.

A new hobby that I have recently picked up is painting. I began by painting a picture of frogs on a log with a cherry blossom tree above them and a bird on a branch. I got carried away with way too much in the picture actually. So I had a friend of mine help me paint a giant picture for our baby's nursery that we are getting ready for when we finally adopt a baby. I had imagined a giant painting of a tree behind the crib, but since we are in an apartment, I didn't want to paint it directly on the wall. We would have to paint over it when we move out, and we would be unable to take it with us. We found 4 canvases at Big Lots for "way cheap" (I'm all about finding the best deal--if that could be a hobby, it would be top on my list), and we decided to put 4 18" by 24" canvases together to paint the giant tree on. I had found online a "heart tree", so we pulled that picture up on my laptop and painted it freehand on the canvases. I am so proud of us! I have decided now that I can really paint if I put my mind to it. I find it very relaxing, and it really makes me not think about anything but what I'm doing at that moment--PAINTING! The painting turned out beautiful. It is a tree with hearts in place of leaves, and a little child is reaching up and grabbing one of the hearts from the tree. Since then, I have painted an angel under a cherry blossom tree, a new painting of frogs, a turtle, an owl on a branch, and another painting of a frog and a dragonfly. I am having so much fun!

A couple hobbies that I tend to do and come back to again and again are sewing and floral arranging/making wreaths. I have a sewing machine, and have made everything from place mats to doggie's scarves to clothes. I put it away for a few years, and I have recently brought it back out to make curtains for the baby's room. I also like to buy artificial flowers, grape vine wreaths, vases, and the mixture to make the water that turns solid. I have made wreaths for every occasion and holiday, and I make sure to change the wreath on the front door for each season and holiday. I also like to buy beautiful, real-looking flowers and put them in small vases and add rocks or marbles to the bottom, and then finally add the mixture that looks like water but is a solid. I usually just have one single flower in the vase like a red rose. I also like to buy or pick fresh flowers and arrange them in large vases. I love to mix the colors with bright green leaves and watch them bloom! When we had our own house, I did more of all of this stuff mainly because we had a lot more space, and I could set everything up in the basement.


Going with the flower subject, I enjoy gardening. There is something very therapeutic about gardening! Since we do not have a yard anymore because we live in an apartment, I can only take care of my 3 house plants. I would probably enjoy growing my own herb garden which I can do in my kitchen or my sun room. The wonderful aroma of an indoor herb garden would really be a nice addition to our home!


This is taken from our adoption profile. You cannot click on it. There is no link to anywhere. On the adoption website, it takes you to our profile, but it doesn't here. Sorry for the confusion!

I enjoy spending time with my fur kids. I believe that playing with them, touching them, and petting them lowers my stress and anxiety more than any other activity. So any hobby that involves my fur kids will definitely reduce my migraines.

I love music and dance. I was a professional dancer, which I have mentioned before. I used to dance at a performing arts center 3 hours a night when  I was very young. I would become a part of the music and literally feel myself inside the music and the music inside me! Now that is a wonderful hobby to reduce stress and help with migraines, but for many years I was unable to dance because of my joints. I will never be a professional ballerina again because my joints are too badly deteriorated. I have however recently begun to dance in a Nia movement class. I am getting the same feeling where I and the music are one. It really works well to relieve stress. I have also begun belly dancing. It is a little more difficult, but I am focused on the belly dancing and nothing else for that one hour. The exercise is good for me, and I am having fun, which is really important to reduce stress and anxiety and pain!

And my two fairly new hobbies are blogging and my blog talk radio show. I have always written in a journal or a diary. I felt as though it helped to write down emotions, things that were bothering me mentally, and when my pain was really bad. I always would look up inspirational quotes and focus on them for the day. Then our world became so computerized, everything and everyone was online. I began to blog about my spiritual journey first on My Path of Self Discovery, then I started my physical journey blog about my chronic pain, etc. Now I have a Blog Talk Radio show that shares the name of this blog I Already Gave My Right Arm To Be Ambidextrous! I talk about chronic pain and healing. I have many different subtopics that I will address. The show will be every Friday night at 11 pm ET. After my first Blog Talk Radio show, I was asked to be a guest host on Egun and Then Some... They also asked if I will continue to be a guest host on their show weekly with my own chronic pain segment! So I haven't set that up just yet, but I will let everyone know when that will be. You can check out my first show about me, Dana Morningstar, and what the show has to offer.  My next show is about "The Worst Pain Ever!"  The call-in number is: (714) 459-3943. I am basically still journaling like I used to do, but people all over the world are eavesdropping into my brain, my life, my world. It is an amazing thing! I feel better when I talk about what is bothering me. I feel even better when others can comment about things that they are experiencing as well, which journaling alone does not have. Now with the Blog Talk Radio show, people can literally "hear" my story and listen to other people's questions. I have to say that it is really helpful for my pain issues and it is a hobby that can also "literally" be passed on. Anyone can read my blog and listen to my Blog Talk Radio show! My stress and pain is decreased, and I help to decrease others' pain and stress in the process, which really makes me happy!

Basically, in summary, all of my hobbies are therapeutic to me, not just for my migraines, but for my other chronic joint pain conditions. They reduce anxiety and stress, lower my pain, make me happy, cause a distraction, keep my mind focused on the hobby and nothing else at that time, and most likely lower my blood pressure as well. They keep me calm, relaxed, and feeling much, much better!

Monday, October 4, 2010

The Funniest Thing About Chronic Illness

The theme for this edition of ChronicBabe's Blog Carnival is: The Funniest Thing About Chronic Illness. It's not all tears and struggles. Sometimes chronic illness is damn funny - either to us or to others. Sometimes we use humor to deal with the hard times.

You may ask yourself, what is so funny about being chronically ill? Well, I'll tell you--belly dancing..

OK,OK,OK...second question that would automatically follow the first one is: What the hell is a chronically ill person doing belly dancing? Well, let me tell you the story before you "laugh out loud" or "roll on the floor laughing" or even "pee yourself laughing". Believe me, you will pee yourself with this story.

I was a professionally trained ballerina, who just happened to develop several chronic pain and joint conditions. I stopped dancing in high school because my boyfriend at the time had hockey practice and his games on the same nights as some of my dance classes. I chose my boyfriend over dance. This was a bad idea because dance to me was a passion. I thought that I could always go back to it at any point in my life. I never thought I would end up so sick that I couldn't actually dance again. Because it was such a passion of mine the thought of never being able to dance again was a serious loss for me. I went through all the stages of grief before I could accept that I could not ever be a professional ballerina.

Lately, since my medication regimen has been working pretty well for me, I have been feeling pretty good. I have reached a point where I felt like attempting an exercise routine. I have still been struggling with fatigue, but for the most part, I've been feeling well enough to start "moving." I began with swimming laps, added a water aerobic class, also started doing yoga and pilates at home, I bought some small light hand weights and ankle weights, I purchases a shake weight, and I felt really fine doing it all. It seems to give me more energy every time I exercise, especially the more challenging work-outs like the water aerobic class. I take it on Tuesdays, Thursdays and Saturdays. I decided it was time to add a dance class...

A facebook friend of mine teaches a Nia movement class on Tuesdays and Friday nights at an all ladies gym near my home. It is a South African Dance/Movement class that focuses on balance and movement. It is a lot like Tai Chi, where you switch from balancing in one position to another or one side of the body to another side, incorporating the healing arts with it. I loved it so much! I felt the music inside me just like I did when I was a ballerina! I felt like I was a dancer again. I am so thankful for this class because it is so easy on my joints, and I really work up a sweat!

Then I found out about a belly dancng class near my house. I decided to push myself a little further. I went for the first time last week. It was at another apartment complex in their clubhouse. There were 5 students and the instructor. Everyone had a coin scarf around their waste except me because I missed the first class so I hadn't purchased one yet. Three of the students and the instructor had a belly-bearing top. I chose not to bear my belly. The thing about belly dancing is that you really use a lot of the hips and the belly as well as the arms. They worked on arms the first week that I missed, so the week I started was to focus on the hips. Of course it was! Now I have arthritis and avascular necrosis with a total hip replacement of the left hip, and my right hip is partially collapsed. Are you started to see why belly dancing was funny?

We began with the vertical and horizontal figure 8's, then the hip lifts and hip shimmies and finally the leg shimmies. Everytime I tried to do anything with my hips, I moved my knees. You are supposed to separate the two and have the hips move as one unit by themselves. I would laugh so hard because no matter how hard I tried, I could not separate the two. The instructor even would laugh with me. She said to bend my knees slightly, and that should help. It didn't. She came up to me and placed her hands on my hips to try to help me move them without moving my knees. She said it would take practice, but I will eventually get it. Every new hip movement, those darn knees would move right along with the hips. It was crazy. I didn't get mad at myself, but rather I would laugh uncontrollably. The laughter was contagious because everyone would laugh with me as I tried so hard. Then when we finally were taught the leg shimmies, she said that this was the only time we were not to move our hips, but focus on the knees and move them in and out to make it look as though our bodies were vibrating. She looked at me, laughed, and jokingly (yet seriously) said I should be able to do this one because I can actually move my knees. I began to move my knees, started to speed them up...faster and faster. I was doing it! Everyone was laughing louder than before because I was doing it perfectly, and no one else could do it!!!!!!!!!!

After class, I paid my fee, bought my coin scarf and a CD of music to practice with. I told the instructor how much I enjoyed the class. I said that it was challenging, I knew it would be, but I love a good challenge. I said that I love to dance and that I was a professional ballerina years ago. It is nice to get back to dancing. I said I know I am struggling a bit, but I will practice everyday. I promise. I told her that I am struggling with the hips and knees being connected I think because my left hip is replaced and my right hip is partially collapsed. She looked at me with a surprised look on my face. I said that it was OK to laugh with me. I wouldn't take a class if I couldn't laugh at myself. I like a class where I can poke fun at myself and be a normal person. I am having so much fun dancing again. I may not ever look like the perfect belly dancer, but I am having a lot of fun doing it. I know I look funny doing it too, but it's all part of the fun of it. It's OK to laugh with me. Don't stop laughing on my account. After all, I'm a person with chronic pain and several joint and mobility diseases, and I'm taking belly dancing classes. That sentence alone deserves a laugh!

Monday, September 20, 2010

OMG! You're Gonna Stick That Needle Where?


The theme of the 13th Chronic Babe's Blog Carnival is: how do you handle a crisis? There are always times when things go terribly wrong with your health or a personal issue no matter how hard you try to take care of yourself. In this blog carnival, we are going to blog about how we prepare for such turn of events, how we cope in the middle of everything, and how we recover from it.

A crisis is a crucial or decisive point or situation; a turning point, an unstable condition, involving an impending abrupt or decisive change, a sudden change in the course of a disease or illness, toward either improvement or deterioration, an emotionally stressful event or traumatic change in a person's life, a point when a conflict reaches its highest tension and must be resolved. Synonyms for crisis are: crossroad, head, juncture, pass.

This is a very easy topic for me because I'm in somewhat of a crisis right now with my health. I was doing really well, and had begun to go to the gym to an aqua aerobics class 3 times a week, swim, and picked up a dance/movement class called Nia. I have also been doing beginner's yoga/pilates, light aerobics, and light weight training at home with workout videos. I really was really great--well for me; it's all relative. And just as quickly as I began feeling well and taking advantage of it, I started feeling tired, fatigued and having pain and stiffness. Yes, it's true; I had begun to have a flare two weeks ago, and I haven't hit the upward swing yet.

For me, I can live with the pain, but the fatigue is killing me. When I wake up in the morning, which is bright and early--about 6:30 or 7:30 a.m.--I have so much fatigue that I literally cannot physically get myself out of bed for four to six hours. That is a lot of time that I am losing each day, which is adding extra stress to my life. Of course, this isn't anything that unusual for me. I tend to have ups and downs all the time with my many chronic diseases. I just have to take it a little slower and easier for a while, and slowly increase what I do each day until I am back to my normal activity schedule.  But for some reason, this time around, I have had a flare with my fibromyalgia, sjogren's, and psoriatic arthritis. To top it off, I only have my period every three months, and this is the month that I will have my period, so I am also PMSing! I have psoriasis on my scalp, I am having muscle spasms, fatigue, bowel and bladder spasms, headaches/migraines, forgetfulness and confusion, and extremely dry mouth and eyes. I ended up getting a new prescription steroid foam for my scalp. I am on a new medication for my fibromyalgia--Savella. I began taking a migraine medication again--Topamax. I had to go to my eye doctor because of scleritis. I had silicone tear duct plugs placed in my eyes two days ago to help to keep what little tear production I have on the surface of my eyes.

Basically, for me, I have to always anticipate that a crisis with my health could be awaiting me around the next corner. It is one of the main reasons why I cannot go back to work because I could need another joint replacement at any moment. After all, that is how this whole blogging thing got started in the first place. I had my right shoulder replaced in March, and although I knew that both shoulders were in extremely bad shape, I would have never thought that my shoulder would collapse ahead of my other hip or one of my knees. And yet, it did. If I had taken a job here in Atlanta, I would have had to quit by now, and we hadn't even been here four years.  So as you can see, planning and foreshadowing what could and will happen next is the only way that I can live my life. So I have a doctor for every single part of my body. I plan trips accordingly. I make sure that I get my Remicade infusion just before a trip so I have more energy. I make sure that I get all my prescriptions filled before I leave to go out of town. I check out every new symptom immediately, and everything that has changed as soon as possible even if I think it might not be anything at all.

This is important because with my eyes for example, I made an appointment with my cornea specialist when I felt like I was getting a sore on my cornea. I have a history of uveitis, iritis and scleritis because of the sjogren's and the psoriatic arthritis. My eyes have been especially dry lately, and I have had to use not only the Restasis twice a day, but also artificial tears during the day and eye ointment to lubricate my eyes at night. Well since May, they have been exceptionally dry, but in the last couple weeks, they have been scratchy, sore, the vision was a bit blurry and even looked as though they had a spot on each one of their white areas. So I felt it was time to see the doctor. It turned out that they were much drier than they were previously in May. They did have a spot on each eye in the sclera, or white part, and the doctor ended up placing silicone tear duct plugs in each eye right there in the office chair. I didn't know they did it right there. She came back in the exam room with a tray, gloves and a needle and the instrument to place the plugs. I said "you're gonna put that needle where?" She actually put a needle into the tear duct to numb it and then placed the plug into the tiny tear duct in the right eye, and then the left eye. I WAS SCARED OUT OF MY MIND! I was at the appointment all by myself, and at that moment, I wished that Jim was there to hold my hand. I kept thinking, "what if she slips?" It went without any problems. She told me that if this didn't work, they would have to place a specially designed contact to cover the white part of my eye only to keep it moist, or to take the serum from my blood and use it as my own natural tears to keep my eyes lubricated, or the last resort is a cornea transplant if all else fails. For now, I am using my Restasis four times a day instead of two, artificial tears and gel tears during the day, as well as the eye ointment to lubricate my eyes while I sleep. I need to wear large sunglasses to keep the wind and sun out of my eyes and avoid breezes--stay away from fans and vents. It's scary stuff, and I'm not even sure that what's been done so far is helping.

I believe that being ahead of the game, knowing that a flare or anything else unexpected could be awaiting around any corner up ahead, is the only way to live my life. I keep a journal, and write everything in it about how I feel that day--pain, fatigue, and symptoms. I usually can see a pattern just before all hell breaks loose. I did notice that at first I was able to exercise 30 to 60 minutes 5 days a week with no problems except my normal pain issues. I began eating better and going to bed at a more reasonable time. So the exercise caused me to be more healthy in other aspects in my life, and in turn I felt more healthy, so I exercised even more. But then I began to slow down, I was able to notice the fatigue first in my journal, so I took it easy on the exercise, and I took some of it out for the week so that I wasn't overdoing it. Then I noticed that my sleep pattern got messed up again, which caused me to have more pain, and then which in turn made me begin to start eating at odd hours. It is a never-ending circle of events.

Hopefully, if we can get the scleritis and dry eye situation under control, I think that I am on my way out of this crisis though. Today, even on a methotrexate day, I played kickball, and yesterday was my aqua aerobics class. So I was able to do a couple days of exercise in a row, and I'm getting my blog post finished on time--well let's hope--for the blog carnival!

Monday, August 23, 2010

Getting Crafty With My Arthritis!

The next edition of ChronicBabe Blog Carnival is live on August 24, 2010, and the theme is Arts & Crafts. It is all about how you design creative idea to make life easier when you have pain and joint problems.








I have to say that as far as arts and crafts go, I'm not all that clever or creative, but when you have arthritis and other pain conditions like I have, sometimes you realize that creativity often presents itself when it comes to necessity.


I think that my most creative invention ever was my Intuition razor extention. When I had my hip replaced in 2003, I relied on my hubby to shave my legs, help me with taking a shower, and even washing my hair when I couldn't walk the steps up to the shower.  When I was finally able to use the shower, and I knew that the hubby really didn't want to shave my legs anymore (after all, he had to sit on the floor in our one-person shower stall with the water spraying him in the face, while he shaved my legs), I had to think of a clever way to shave my own legs without bending over to do so. I ended up using my Intuition razor and the long handle to my shower sponge. I cut the sponge off the handle, and I attached the handle to my Intuition razor with 5 hair rubberbands. It worked out great. I do not have it anymore to show you my creative invention, so the next time I make one, I'll be sure to take pics!


I mentioned that the hubby had to also help me wash my hair when there was no way for me to go up the steps to get to our shower.  We tried several different ways to wash my hair,--in the kitchen sink, in the half-bath sink--but the best way to do it was to take a water basin that you use to wash dishes. Put some warm tapwater in it to begin. I layed on my back with my head off the sofabed. The hubby used a big plastic cup and filled it with some of the warm water in the basin, and he carefully poured it over my head. Then he added the shampoo to my hair and rinsed it the same way that he wet my hair to begin. Then he conditioned it and rinsed again with the cup. It worked wonders! They do sell hair washing basins and hand-held sprayers, but they can cost a fortune. This was an inexpensive way to have your hubby or significant other or caretaker wash your hair with no fuss!


I have found that washing your dishes can be really hard when you have arthritis in your hands. The dishes slip out and slide out of your hands! I found that the rubber mat that you put in your tub works great in your kitchen sink. The rubber mat keeps the dishes from slipping in the shiny sink, and then you don't have to worry about them sliding out of your hands and spill water all over or even break the dish!

When making my bed, I use a pizza paddle to tuck in the sheets! This is a great idea if you have trouble with your hands and fingers trying to tuck sheets in by hand. It can be hard and very painful, but the pizza paddle helps tremendously!

Sometimes using a wash cloth or spongy or scrubby can be difficult to hold onto on really bad painful days. I like to use a wash mitt. You don't have to grasp anything then, so if your hands hurt badly, you won't have to hold onto anything, just wear the mitt. They are easy to make with old towels and a sewing machine!

I do have a shower chair from when I had my hip replaced, but it is big and bulky so we have it in storage. I do find that there are some very bad pain days where I cannot sit all the way down in the tub, and I am too fatigued to even stand for a quick shower. I use an all-weather garden chair in the shower. It is a lot less huge and easier to handle.

I keep a gripper in the tub/shower next to the faucet knobs. On some days, the pain is so bad, I cannot even turn the water on or adjust the temperature. I use a gripper to grasp the knobs and make it easier to turn. I just use the same gripper that I use in the kitchen for opening jars. I have like 3 of them, so I keep the one in the kitchen, one in my bathroom, and another in the guest bathroom.

I use a toothpaste squeezer device to squeeze out the toothpaste from the bottom of the tube. I cannot squeeze the tube with my hands because it is hard to make a fist. You can find them at the dollar store even!

If you have a regular toothbrush, try putting a large foam hair roller on it to make it bigger and fatter to hold easier--you can do this with eating utensils too. Otherwise, if you get an electric or battery-operated toothbrush, they are bigger and fatter and easy to grasp as well. For flossing, I use the reach flosser. It has a handle to hold the floss, and it makes it easier to hold than those tiny dental floss strings in your hand.  You can also use a large foam hair roller on it as well. Use the same idea with your foam hair roller on anything with a handle like hairbrushes.


When it comes to filing your nails, it can be a lot easier if you take an emery board and glue it to a large sponge. You can more easily grasp the sponge than a tiny emery board. It is a lot easier on your hands!

Anything that is aerosol in a can--shave gel, hairspray, and even my olive oil that I use to coat pans--the lids can be difficult to take off and put on. I just keep them off all the time!

You can loop a scarf around certain handles to pull them open with your forarm instead of your hands and fingers.  A good example for this use is on the refrigerator, if you have those type of handles that you can tie a scarf around.

Keys can be hard to turn. Have your keys made with a large plastic handle that is easier to grip or put your key in a stiff sleeve to make it easier to turn.

You can put a laundry basket in your car attached to the floor with electrical tape. This way, when you have groceries, you can place them in the basket. They will be easier to reach, and you don't have to worry about bags falling over in the car.

I hope my ideas and creativity helps you out! Just remember, if something is hard for you, try to think of a better way of doing it. Let those creative juices flow!!!


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
Watch live streaming video from arthritisfoundation at livestream.com