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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Sunday, May 9, 2010

Am I Allowed to Be Sad, Angry and Upset on Mother's Day?



I know that Mother's Day is such a lovely day for most people, but to be honest, I hate it!  I try to avoid it all day long. I hope that I get my own mom's voicemail so that I don't have to speak to her and can just leave her a message.  It's just too painful for me. I always send her a card and a gift card to someplace she really likes. This year I sent her a gift card to Talbot's. She works there and loves their clothes. I also send a card to my grandmother. I only have one remaining grandparent alive--that includes my hubby's as well, just the one, Gammie--and she lives in a nursing home with Alzheimer's Disease, if you can really call that living. Then, I send a card to my mother-in-law with a gift card also included. This year she received a Target gift card. This way, she can pick out anything she wants. And of course there's my other mother, my friend Liz's mom Kim. I always send her a mother's day card too. Liz was always like my little sis, and she was even my maid of honor in our wedding, so we share our moms. What we don't get from one mom, we receive from the other.  It just seems to work out good that way. This year I got 2 extra mother's day cards because we have 2 friends who had babies in the fall, so this is their first mother's day! 

Ok, fine on the cards...

Besides that, I like to stay to myself and not really talk to anyone, or stay busy to forget that it actually is mother's day.  I always thought that we would be married and have tons of kids by now. Jim is 36, and I'm 35.  When my parents were 35, I was already 15 years old, and my brother was 10. The same goes for Jim; he was already 15 as well.  I just always thought that would be me. I just thought we would start a little bit later of course because we got married when we were 25 and 26. I thought we would have a baby when I was 27 or 28, and then when I was 30, and then again when I was 33, another at 35, and our last at 38. The perfect house full of kids! I always imagined a house full of children's laughter; children running all around, a big kitchen table--long enough to fit everyone--bunk beds, a tree house, and a tire hanging from an old oak tree.  That is how I pictured it. Of course, when you picture a house full of children running and screaming, you also picture yourself "not sick".  So, when we found out I had all these chronic illnesses, I scaled down my dream a a bit.

I imagined us with 2 children a couple years apart, a boy and a girl--the girl is older. She has dark curls, dark skin, and blue eyes, and the baby is a boy with lighter skin, lighter hair and blue eyes.  And yep, you guessed it, I didn't carry them in my tummy.  Ya know, I never ever imagined that part though. I never thought about what it would be like to be pregnant. So I'm OK with missing out on that part. I always imagined that my kids would all look different, and that none would look like me.  Kinda funny, right? So, yes, you guessed it, I always imagined that our big family would be an adopted family.  And now, I believe that little girl will be adopted, but I'm not so sure about that little boy.  I'm thinking for our second baby, we might think about a surrogate. We would use Jim's sperm and a donor egg. So yes, that baby would still not look like me. It's OK with me though still. I don't need my kids to look like me. I just want kids soooooo badly!  Like I said, I always pictured us with a family. Now here we are married nearly 10 years with no kids, well no human kids. We do have 2 furkids who have brought us a lot of love and joy, but nothing near what 2 human kids would bring us. I just will not feel fulfilled without human children.

So today when I called my mom, as her phone rang and rang, and I prayed and prayed for her voicemail, and suddenly I got it..."Hi this is..." Oh, thank God. I don't have to talk to anyone about mother's day. I'm off scott-free! No sooner did I leave her a message and hang up did my phone ring.  "Did you just call me? I missed a call and when I looked at my missed call, it looked like your area code." Damn. I have to talk to someone on mother's day, a mother, and my mother at that.  I told her happy mom's day and let her know that her card was on the way. She asked what I was doing and wanted to know if the dogs got me anything. She wanted to know exactly what was going on with the birthmother that is interested in us right now to explain it to everyone that was with her at the St. Louis Zoo. It was her and Dad, my aunt and my cousin, and her friend (my other mother) and her family.  For me, it was just like someone rubbing mother's day in my face. They were celebrating the wonderful day, talking to me the odd girl out, wondering what all the details were in the "other way" to become a mom on mother's day.  I explained it to her, but as each word came out of my mouth, I became more and more upset. I really didn't want to talk about it on this particular day.

He will be with you also, all the way, that faithful God. Every morning when you awaken to the old and tolerable pain, at every mile of the hot uphill dusty road of tiring duty, on to the judgment seat, the same Christ there as ever, still loving you, still sufficient for you, even then. And then, on through all eternity.
-- Thomas Kempis

So that is why it is so tough for me to wake up on mother's day. I don't want to even get out of bed and face the day.  It's very depressing to me. I ask myself sometimes questions that I know are not worth asking, that I know have no answers. I want to know why? Why does everyone around me seem to be having babies and getting pregnant, and we keep waiting and waiting--for six whole years!  I feel like we could have had a six year old daughter by now. We have such open preferences, Jim has a great flexible, good paying job. I'm a nurse, even though I stay home now. I ask God all the time, why we are being punished. I know he's not punishing us. I know that it just hasn't been the right time for us. I know that all the other times in our lives wouldn't have worked out with my illnesses, with our moving around all the time, etc. But I can't help but question things because, well, I'm human, and that's what we do.  I have gotten better at allowing myself to "let go and let God," but it is difficult.  Everyday is a learning experience for me. I have to remind myself each morning and each night, that I'm not in control of this adoption. These scripture passages and quotes I have even attached to my email signature. It reminds me that I am not in control and that God is.

God is in Control of My Adoption. 

Fear not I am with you… Isaiah 41:10 

Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord. Psalm 27:14
We have chosen adoption as our option.  

God will show us the way.

So today was a particularly tough struggle. I think it is a combination of my recovery from a shoulder replacement, the fact that I am due for my Remicade infusion in 4 days, it's mother's day, I made the mistake of looking at everyone's mother's day wishes on facebook, so many of my friends either just had babies in the last year or are due in the next year, the waiting part of the adoption is so hard, no one in my family has donated to my Walk Team (I take this personally), and I'm trapped at home because I can't drive yet. The recovery from my shoulder has been easier than I thought it would be in some ways and harder than I thought in other ways. The joint pain is gone completely because it was replaced, but I still have a lot of muscle pain that I wasn't expecting. I didn't have that with my hip replacement. The skin around the incision gets very taut and stiff. I have to pull on it every so often to stretch the skin. It's weird. I'm not sure if it has anything to do with my connective tissue disease or not.  I feel like my range of motion is really good. It is already better than my other shoulder. I still have a long road ahead of me, I fear though.  Always, by the week before my Remicade infusion, my body is ready for it! I already said it; I hate mother's day!  There are too many reminders that I have no children, that my life keeps being put on pause while everyone else's is on play, and that it is yet another year that my family (including my own mother) is in complete denial that I have a chronic illness or that I had a serious surgery.  Being stuck at home makes me think about all of this stuff more and more. I'm not so sure it's all that bad though. It could be worse, I guess, if I began to sink deeper and deeper into a depression. But for me, I think it is helping me to see things as they truly are.  I just would like to be able to escape them once in a while, which is a bit impossible right now.
Jim knows how hard this day is for me so he got me a card from our furkids and took me out to get a haircut. I'm gonna do my eyebrows later.  I know my furkids are very thankful for their mommy!



I'm trying not to be so negative, but I feel like with everything that I've been dealt in this lifetime, sometimes I deserve to vent every once in a while!  Ya know the Arthritis Walk is coming up on May 22nd in Atlanta. I have been doing this fundraising thing for a couple of months now on facebook and with email.  I raised $275, which isn't bad considering that I can't even leave my house. The thing is that all these other people send emails out to their family and friends, and they get donations from their family right away because they're family. I have not had one single family member donate to my walk team. I have had one really close friend donate that I've known for 10 years, a friend that I have recently gotten close to in the last 2 years, a couple of friends from high school (which was let's just say a long time ago), a friend that I really hadn't seen since college, someone that works with my husband and the sister-in-law of a friend of my mom's.  That is quite a list! Can you believe that all of these people donated before my family? Now I know that it's not very good economic times, but you can't tell me that for a family member, you couldn't find something in your life you could give up to give even 10 bucks. You could not go out to dinner once or twice and eat at home instead and donate what you saved to the Walk. My friend here in GA told me that she didn't have the money to donate. I told her that was OK. I said we would love to have her walk with us. She also has arthritis, so for us, we are walking for her too, not just me.  I would have loved for her to walk with us, and even if she couldn't donate, to know that she supported the walk in that way would have been enough for me.  She replied to me and said that she couldn't walk this year. She said that she supports our team and hoped we did well and had a great day at the walk.  How wonderful is that!  Not one of my family members said that to me!  She actually even ended up donating anyway. She sent me an email that she did her bills for the month and had money left over so she donated to our team.  That was so nice, and I will never forget that loving gesture!  
I do admire all you mothers out there; don't misunderstand this post. Mothers have the hardest job in the world. They have the longest hours, the lowest pay rate, and the least time off.  Their children and spouses often forget to tell them how much they appreciate them, so they work without incentives as well. But, they have the most rewarding job in the world. Once you sign on to this job, you will never want to quit! God Bless all the mothers and mothers-to-be!

4 comments:

erica said...

Wow... I don't even know what to say. Know that a lot of moms (myself included) are sensitive to the fact that some of our friends may not have children- and want them. I'm always thinking...Should I tell her about this or that? Does it sound like I am boasting?

I'd be interested in hearing what your thoughts are to those moms who might be sensitive to the fact they're talking about their kids (we do it a lot) and there are other women who might be upset by it...

Adopting is one of the best gifts you could give to a child. I wish you the best of luck!

Dana Asmara Morningstar-Marton said...

Erica, First of all, I just want to say that this was the very first Mother's Day that I acted this way. I generally dislike the day, but do not hide from the world, and still meet with friends that have children and talk with my own mother. This year was tough for me I think because it is the farthest we've ever gotten in the adoption process. We actually have a nursery ready for our baby to come home to. We never had that before. So I have to walk past the baby-to-be's room every day multiple times.

I think that it's important to keep your communication open with your friends with kids and without. I have lots of friends with kids and some friends without. My friends with kids are very understanding that it is a sensitive subject for me when it comes to having kids. I love being with them and their kids though. I'm not going to miss a moment of their kids growing up to sulk. I'm not like that. I took that one day to feel sorry for myself, and now I'm back. Many people that really know me were very worried about me after reading this post. I never let on like this about hating things like mother's day and not wanting to talk to people and just wanting to hide. So, I needed that one day to realize that I was acting crazy, and to put my head back on straight. My friends are wonderful. I also have many friends who are much older than me who do not even have a significant other. They talk about having children, and that they may never reach that goal in their life.

I truly believe that you should talk about your kids with all your friends. Your friends that do not have kids probably do want to hear about them, and if they don't, I'd hope they would trust you enough to let you know. Also, I feel that you should be able to talk openly about it with your friends, and just ask them if they feel like you talk too much about your kids, and don't forget to ask them how they are doing. If they have been trying to adopt or trying to have a child, it is a very emotional and sensitive time for them. Don't forget to let them know that you are there for them and that they can talk to you about it. Let them know that although you have kids, you want to understand that they are in pain and want to be there for them. If you do that, I guarantee your friends without kids will never think you are boasting. Thank you so much for the good luck. I believe that you are a wonderful mom if you are worried about not being sensitve to those without kids. If you are thinking about them, you are a wonderful person, and your kids are lucky to have you as their mom!
Blessings,Dana

shoshana kleiman said...

I was blessed with two live births in the midst of many miscarriages. After eight IVF treatments we decided to adopt. My beautiful son looks more like me than my natural daughters. I'm glad we have him, even though I so sick. Don't give up hope during the adoption process. And you might uet end up with a child that looks like you.

Antenna Installation Rio Rancho said...

Very nice blog yyou have here

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
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