I Already Gave My Right Arm To Be Ambidextrous...Now Read My HIPS!

Now Read My HIPS! is returning very soon. My blog is currently under construction. I am doing some minor renovating and will begin blogging for the New Year, possibly before. I can't wait to start up again. I have missed all of my followers! I love every single one of you! You have helped me to become who I am today! I could never have continued my blog without all of your support. Please be patient, and please continue to support this blog as well as my other blog Chronically Mommy. Pass this information on to anyone that you know may be interested in knowing...To be continued...

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 and performs! I still have pain, but I want to blog about how I have fun too! Now Read My HIPS! Please read Chronically Mommy (chronicallymommy.blogspot.com) for info on health/pain.

Hi, I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, sjogren's, fibromyalgia, and hypermobility. I found out that I have autoimmune arthritis in my cervical spine and a bulging disk in my lumbar spine. Seven years ago my spine orthopaedic surgeon told me I had a small amount of autoimmune arthritis in my SI joint. The question still remains: Is the spinal involvement due to Psoriatic Spondylitis, which is a more severe form of Psoriatic Arthritis or is it a new diagnosis of Ankylosing Spondylitis? 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 literally gave my right arm to be ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012.

I began belly dancing. Yes that's correct! I began belly dancing in 2010, so now it is time to "read my hips." 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 belly dancing and performing! I belong to a dance troupe since February of 2014, Seshambeh Dance Company. I am dancing weekly with my troupe in an advanced class and on Saturdays with another class which focuses on exercise and being a strong woman. I am performing a lot more often now, at least 4 or 5 times per year! Join me in my journey!

At times, I take 16 to 20 pills a day. I go every 4 weeks to the to get a 2 hour IV for my autoimmune arthritis diseases. Just when one thing seems to be doing better, something else goes downhill! My attitude, however, is always going uphill! I am 42 years old, have been married 16 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!

(Formerly "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.

Now Read My HIPS!

Now Read My HIPS!
Asmara "Beautiful Butterfly"

Blog with Integrity


Sunday, May 30, 2010

What I Like To Do To Help Myself When I'm Having A Bad Day...

"Welcome to our fifth edition of ChronicBabe Carnival! We're talking about our favorite self-care tools and techniques. ChronicBabes want to be AWAP (As Well As Possible). But sometimes chronic illness gets in the way and we forget to take care of ourselves. Or we get stuck in survival mode. Self-care can sometimes be a challenge. The bloggers of ChronicBabe Carnival #5 are sharing some seriously useful self-care tools and techniques. Take a look!"

This is an interesting topic because I've had a few bad days--weeks since the week leading up to the Arthritis Walk Atlanta up until now.  It took so much energy to prepare for the day, then finally getting to the day, and actually walking a mile, was a lot more than my body could really sustain.  I can't even believe that I walked the mile without my cane. I haven't been using it since my right shoulder was replaced because (even though I used it in the other hand) it makes it impossible to carry anything. I can't hold anything yet with my arm that had the shoulder replacement, and when you put a cane in the other hand, well, you might as well forget it--you just can't carry anything. I did find a purse/fanny pack that was actually stylish. I can use that!

So then my mother-in-law came into town, and we went to Zoo Atlanta. Although it is a small zoo, it was 90 degrees outside, humid, and I still was fatigued, exhausted and in a lot of pain since the Walk. Also, it may be a small zoo, but it is all hills!

After she left, I just collapsed! I decided that since my orthopaedic surgeon told me that I can go back to the pool at the gym to move my arm around, that would be a great idea to do on Saturday for the long weekend. I went there for 45 minutes while my husband was working out. I started in the hot tub just moving my arm all around. Then I moved to the pool. I can't swim yet because I can't move my arms fast enough to keep afloat, so I walked back and forth, moving my arms in the water with some resistance. It didn't seem hard, and I really didn't feel tired when I finished. Oh, but when I got home, I hurt so bad! I actually took 3 pain pills that day! I went to bed and slept until 10 o'clock the next day. Then on Sunday before Memorial Day, I slept all day long; I just couldn't keep my eyes open! I looked at the clock and it was 11, then 2pm, then 4pm, then Jim was coming home from work and it was almost 6pm!

So this leads to what I can do to help myself when I'm having a bad day...

Obviously, one of the best things I can do for myself is get some well-deserved sleep. It's amazing; I can't sleep worth a damn at night, but when I need to, I'll sleep my whole day away on the couch. It doesn't seem to make much sense to healthy people, but I'll bet you chronics out there get it!  Also, I always feel better when I can easily grab something to eat that is healthy. I really enjoy Kashi. They have good granola bars and other snack foods as well as frozen foods.  It is hard to have to cook when you don't feel well.  I really love to cook, but when I'm so fatigued that I can't stand longer than 5 to 10 minutes at a time, cooking is off the list.  So then there are warm baths...I love a warm bath. Sometimes I'll sprinkle some epsom salts in there. I love natural shampoos and conditioners and body washes. Right now I'm using Tea Tree Oil shampoo and conditioner and for my body wash--pomegranate acai berry wash. I also use Tea Tree Oil in a dish and light a candle under it to burn the oil. I love to use aromatherapy. I find it relaxing. It helps me to feel better mentally as well as physically. I try to find time to get a full body massage or a foot massage or even a pedicure. It's nice to be self-endulgent sometimes!

I like to read and write--journaling is very therapeutic, and actually that is how I began blogging in the first place. I enjoy nature--God gave it to us, and I believe we should take advantage of it more when we are able to. I try to walk the dogs more often. On bad days, I walk them one at a time, and I take them on shorter, more frequent walks instead of longer less frequent walks. Music can be relaxing if you choose the right kind, but of course, it also depends on your likes and dislikes as well. I prefer country music and classical when I'm having a bad day. Anything any louder makes my head hurt more.

I have sparked an interest in energy healing. I have gone to an energy healer and looked into other healing arts. I am a very spiritual person, and I firmly believe that when that person places her hand on or above me, God is working through her. Miraculously, I can feel God's energy pulsing through my body and literally "healing" my pain. I would recommend it highly. The down side is that it is not covered by insurance usually and can become expensive. Try it once and you'll see! Prayer and meditation can also work very well. Also, try to use healing energy on yourself. It is amazing!

I also find that being able to exercise at the gym, for me it's in the pool, is really great if I'm able to. Since I'm unable to actually swim right now, just being in the water is therapeutic to me...

Connecting with others is important to me because I tend to go inside myself on bad days. I withdraw from the world. I like to be able to go online and connect with my different network communities, blog communities, and email friends and family. I also like to be able to pick up the phone and talk to people if I need the company. What I've found interesting is that when I'm having bad days, I'm drawn more to those who are sick like me, but when I feel good (it's all relative) I am able to communicate with anyone sick or not. It seems like it's harder to keep my attention with those that don't understand because they don't live it. And of course, let's face it, even good days, are bad days for those that are not sick, so how can we even explain that our world is collapsing around us? It is just easier to be around those who really get it on those really bad days.

I love to just relax with my furkids on the couch and get all caught up with the Lifetime Movie Network! That is my ultimate bad day revival kit. Take a warm bath, a walk with nature and the furkids. Relax with my favorite book, sleep for hours, awake with my laptop to catch up with friends, grab quick snacks all day long, and then give an old friend a call on the phone. If she stops by, that would make it even better!

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!

Saturday, May 8, 2010

The Bluebird's Broken Wing...

The other day, I was trying to get my toothbrush and toothpaste out from the medicine cabinet. I have one of those monster big handled battery-operated toothbrushes because I have no more connective tissue in my hands, so it's hard to hold onto small things like normal sized toothbrushes. Well, anyway, the toothbrush fell out of the medicine cabinet hard and broke my ceramic bluebirds right wing off! I wanted to cry. I've been overwhelmed with everything ya know. With a right shoulder replacement, I didn't realize how limited I would be. Although I choose to write most of the time with my right hand, I can do just as much with my left hand because I'm ambidextrous. Except of course, my left thumb has been extremely messed up for about 3 months, so it's a bit harder to do things with my left hand than my right.  So, I've been more emotional about things too. I've also been clumsy, sooooo clumsy. I cannot tell you how many times I've run into the door frame WITH MY NEW SHOULDER ARM! What is wrong with me. Just today I hit my right elbow in the doorknob. I still have the bruises on my elbow from my shoulder replacement shoulder, and now I have a brand new lump on top of that.

So I got to thinking after the poor innocent ceramic bluebird's wing was shattered...

Was there a deeper meaning to it?  Was there something to it that it was it's right wing that collapsed, and it was my right shoulder that collapsed?  Did it mean anything that a bluebird means "happiness," and I broke it?  Not only did I "break" "happiness", but I symbolically kept it from flying and being happy.   Was my shoulder collapsing keeping me from being happy?  Did I feel broken?  Was I unable to fly?

OK, I have a lot of alone time, true...

But ya know when you have a disease like I have, you can't just superglue my collapsed joints back together. The blue ceramic bird you can. The ceramic bluebird can't even fly. Although it is in a still position of it being in flight, it still cannot really fly. Although, I cannot really fly, I can take flight in my goals, in my wants and dreams.  I could soar.  I want to soar. There is so much I want to do...I want to soar. As a matter of fact the name of my Walk Team is AV'N Fun "Psorin'" Above Arthritis!  I spelled it that way because I have psoriatic arthritis.  Get it.  Yeah, I know, pretty creative--the other part is short for "having fun", but stands for AVN (avascular necrosis).  Yep, I just keep 'em coming!

So, although I'm at a rough spot right now in my life, I'm working hard to get back in flight again. I need to soar again!  I'm really only that bluebird of happiness when I can fly, and when I can fly high!  The pain is really not too bad, at least not in the shoulder. It feels more like muscle pain. I'm working to rebuild the muscle that they cut through to place the new shoulder. Now, my knees, feet, ankles, elbows, wrists, neck, back, and hips are another story. I'm due for my Remicade infusion next week Thursday, so my body is letting me know by swelling, being hot, and showing redness.  But it's all my normal routine stuff!

To help with that happiness, we are going to see Iron Man 2 at the drive in movie theatre tonight with friends!  I think I will really enjoy that! It's too bad we can't fly there! LOL!  I guess driving is fine, and relaxing in the car with lots of snacks and candy that's really bad for us!!!


Walk Team

Walk Team





Belly Dance

Belly Dance
Before the Performance 5/6/12
Watch live streaming video from arthritisfoundation at livestream.com