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

BlogWithIntegrity.com

Tuesday, March 30, 2010

This Time I Really Did Give My Right Arm...At Least My Right Shoulder...

Well yesterday morn, I had a humeral head replacement surgery at Piedmont Hospital in Atlanta, GA.  The surgery lasted 2 hours. I did fine in recovery, and got to my room around 3 pm. They gave me a nerve block in that arm, along w/ general anesthesia.  I actually fely no pain yesterday, the day of surgery...of course, I knew it would be short lived. I was told by my surgeon that a normal sized adult who has a nerve block like I had, would have it wear off by midnight.  He said that for me though, since I'm so small, it probably wouldn't wear off until 2 a.m. Well, I proved him wrong.  My block wore off at 10:30 p.m.!!! That just goes to show you that when you take as many drugs as I do, your tolerance for those kinds of drugs goes up.  It truly is amazing.


So today, I woke up and thought, "who the hell beat the f*@& out of me in my sleep?"  It was a complete 180!

Today, I had 2 shots of morphine in my ass, oxycontin 20mg 12 hours apart, and 10mg of oxycodone every 3 to 4 hours.  It has been tough!  My doc changed my dressing and thought it would be a hoot to move my shoulder in a complete circular rotation!! WTF!!! Then P.T. came to work on my exercises!  Again WTF!!!

This is supposed to be the worst day--the day after surgery--2nd post-op day!!! I've almost made it through.  Tomorrow is another day!

Wednesday, March 24, 2010

I Ask God Today For Strength...Oh, And By The Way, Could You Also Take My Pain Away If You Have The Time?

Oh my, it is one of those days, where it hurts too badly to get out of bad, but too much to stay in bed!  I HATE these kind of days.  Why am I having a day like this, on a day like this?  It seems like it is going to be a gorgeous day today.  The sun is shining, the air is still, and it isn't as cold as it's been lately. And yet, I am having THE WORST DAY that I've had in a long time.

Ya know, on a day like this, the first part of my day is to ask my God to please give me strength. To ask for strength is a big thing.  I need strength to get out of bed, to get myself dressed, to take the fur kids outside, to bend over to clean up after them outside, to feed them, to draw up Max's insulin, to inject his insulin, to make my breakfast, to clean off my plate, and to get myself to look at least "presentable" before I step out the door to face the day.  I ask God for strength as I try to hold my throbbing hands on the steering wheel. I ask for strength as I feel the tears build up, when I realize I can't reach with my right arm to change the radio station. I forgot for a brief moment, as I do sometimes first thing in the morning, that my right shoulder had collapsed. I ask God to give me strength as a small amount of anxiety begins to build up inside of me as I remember that in 5 days, I am going to have a very serious and invasive shoulder replacement surgery. I take a deep cleansing breath, and suddenly realize that today is one of thoe days that I definitely need 2 deep cleansing breaths, so I allow myself to take another. And I put the car in drive and off I go to start my day!

Strength is an important power to have over yourself, your day, your body, (I tend to separate myself from my body, especially on very painful days, because I am not my disease, and my disease has taken over my body, but it has not taken over ME!) what you say, what you do, and what you choose in life or just on a particular day or moment.  Strength is a wonderful power and quality to attain.  I believe you don't just have strength. You have to work for it, ask for it, and be rewarded with it.  God will give it to you, but it will not be handed to you wrapped in a pretty box.  In order to get strength, you must be faced with struggles, fears, or something that you have to face head-on.  If you are able to overcome it, fight it and win, or walk away without avoiding it, you have gracefully accepted the gift of strength.

Today, I am moving, and continuing with my day head-on! I am not giving up. I am not crawling into bed and whining about the pain.  I am taking a hot bath, exercising my joints, praying to God, massaging my joints,etc. I am trying to overcome my worst enemy--PAIN.  I know that by the end of the day, I will have received a beautiful package from God with love filled with strength, that I worked so hard to receive.

So when I ask for God to also take the pain away if he has the time, eventually, the pain does get better. I know that if I stay strong and stand up to the pain, it will go into hiding.  I like to add a little humor, even talking with God. I am not a God-fearing person. I believe that he is a humorous God.  I think that a good laugh always help to get rid of some of the pain, and God can always join in the laughter.  God is always with me, and we are great friends. He is my father, my brother, my friend. She is my mother, my sister, my friend as well. I see God as a Father figure as a male, but I also see God as a female. I tend to pray to God, the female when I need help in an emotional sense. If I need help with a family problem, with self-discovery and spirituality, and things that are more personal, God is a female to me. When I ask for strength to get through pain and discomfort or something that I would ask my dad for help with, I see God as a male.  So for help with the whole pain and strength, I see God as a father-figure.  When I want to just talk to someone, for encouragement and love, I talk to my female friend, God. But God as a whole is humorous overall, and has a sense of humor.

Tuesday, March 23, 2010

How to Cope When Things Get Too Painful/Overwhelming!

Today, I woke up at 6am to give my one furkid a drink and take him outside. I've been having to devote so much of my extra time and energy to taking care of him (which already is not a whole lot to be handing out). Max is his name.  We didn't name him; he already had his name when we adopted him. He is a Silky Terrier, and he looked like a big Yorkie (well all 13 pounds of him). We were told that he was 3 years old when we adopted him in Nov. of 2000, right after we got married.  We already had a 9 month old puppy at home, Cookie (a Jack Russell, Beagle, Spaniel mix). I wanted to get him a friend, a companion, a brother.  Max was hit by a car 6 months before we adopted him, and had his back leg amputated. When we got to PetCo, Max was in a cage all alone, and no one was even looking at him.  We ran to his cage (my mother-in-law and myself), the rescue group volunteer came up to see if we needed any help. I said I had read all about Max in the newspaper and that I was there to adopt him.  They looked at me all surprised. You don't want a puppy?  Nope, I wanted Max...Max had went through 12 foster homes, and he was ready to come home, to our home, where he belonged...

Max remained perfectly healthy until 2007, when he developed Cushing's disease--an auto-immune disease that affects the adrenal glands.  It causes the adrenal glands to produce too much cortisol.  Cortisol is a hormone, a steroid. It is like he is on steroids all the time--constant hunger, thirst, change in behavior, etc.  He was started on a medication that was like a chemotherapy drug. It basically attacks the adrenal glands. If it attacks them too much, it can obliterate them.  Exactly one year ago, he went into remission. No one knew why.  We stopped the meds, and he was doing great.  Then, in Nov. of 2009, he began to have accidents in the house. I took him for an urine test at the vet. When they were doing the urine culture, they used an ultrasound to guide the catheter, and that is when they noticed something in his bladder.  He had bladder stones!  We scheduled for him to have surgery.  I was torn.  He was 12 years old, and had already been through so much. I wasn't sure if it was a good idea to put him under anesthesia.  I spoke with a good friend who is a vet in the city I grew up in.  She told me that he needed to get the surgery now before the stones tried to pass through the urethra and cause pain.  Then the surgery would be an emergency.  You don't want that.  So he had surgery on Nov. 20th, 2009, while we were out of town for a wedding. I was so nervous because we left him, but I thought he would actually be in the hospital longer than normal then and under their care rather than sent home. I thought that would be good.  He wouldn't know if I was out of town or just waiting at home for him.  They removed 28 stones from his bladder, which they told me would help him to be able to go potty much better and easier.

He ended up having a reaction to the staples, then 2 months later a suture reaction.  He went on antibiotics multiple times after surgery. He has had no more stones, though. Then he started having more accidents again this past month in Feb.  We took him for another urine test.  There were no stones, but sugar in his urine.  They did some blood tests, and his blood sugar level came back to be 425 (normal is 80-150).  He was diagnosed with diabetes and put on insulin shots twice a day, went blind in two weeks, could hardly walk, licked open his incision from his surgery 4 MONTHS AGO!, and was retested for Cushing's disease, which also came back as positive. I have been trying to decide what to do. He is not in any pain, and he still plays with his ball and his favoritie newspaper.  You have to carry him almost everywhere. It has been so much work for me, though, having all of my own chronic illnesses.  I really needed to make a decision...



For my own self, I began to have more fatigue, more pain.  I could hardly get out of bed to take him out in the early hours of the morning.  I could hardly carry him anywhere anymore.  I was having trouble cleaning up his accidents.  It was getting so hard, and I needed to find a better way to cope...

I needed to get more sleep.  I don't sleep at night. I could say that I don't sleep well at night, but let's face it, I don't sleep at all at night. I am in my most pain. I do my most thinking. I do my most worrying. I can never get comfortable.  The night is THE WORST. So, why not take advantage of my better times and my worst times, and use them for what they are good for.  So, since I can think best at night, I can read and write and do anything that fits into the category of reading or writing, such as blogging or emailing or surfing the web.  Then during the day, I can do some of the various household chores, and take a huge nap.  I don't work anyway, so who's gonna tell me I can't do that?   This is a great way for me to cope, use my strengths at my best times, when I'm least fatigued and have the least pain.  Sleep when I'm able, and when I can't, to hell with it. I might as well do something that I feel like doing rather than focusing on the pain at that time.  Besides, if I lie in bed at night trying to fall asleep and can't, tossing and turning, that is all I think about is how much pain I'm feeling at that moment.  And ya know taking a huge nap in the middle of the day is great because then I'm a whole lot less fatigued!

Prayer and healing go hand and hand with me and are also great coping mechanisms.  Rather I'm on the receiving end or the giving end, I always get something out of it.  Whether you use Reiki, Theta, or another form of healing.  Energy transferred from one person to another is healing!  I have been on both sides. I have been taught how to be the energy healer, and I have received energy healing.  When you are the healer, it is dependent upon the receiver on how well it will work.  So no matter if you are the giver or the receiver, it is always up to the receiver.  So every time I give,  and the receiver openly accepts the energy, I also receive a balance of energy in return.  And when I am the receiver, I graciously accept the energy.  The same goes with prayer.  When we pray, we are always thanking or asking God for something.  So we are giving thanks for something, or we are asking to receive something.  So in prayer we are giving and receiving as well. I believe that as an energy worker, I am a conduit for God's energy or his love, and He/She is sending his healing energy through me to help others who are in pain.  It is a wonderful thing!  Prayer is the same way.  We pray together or alone, bringing the power of God to us to help us here. So Prayer and energy healing are wonderful coping mechanisms.  I use them both on my dogs.  Cookie is living proof that it works. Both of his torn ACL's healed without surgery, and I was told by 5 different vets that surgery was the only way. He has no problems now.  Max's Cushing's disease originally went into remission with prayer and healing energy.  Also, now, as of 24 hours ago, Max is walking on his own, has had no more accidents, is seeing better, his sugar levels have decreased, and he is running around feeling better!  Wonderful coping mechanism!

For days that I cannot get out of my PJ's, I love to read, with a good cup of tea and honey. I prefer chamomile or Earl Grey or even a nice red tea.

I enjoy swimming at the pool at the gym. I feel like I leave my body. It is almost an alternate universe to swim.  You can visit some other posts about how I feel about swimming, but it is a wonderful way to help pain, stiffness, and fatigue. I get a jolt of energy.

I do love a nice warm bath, in the dark with just candles, especially vanilla scented candles. I don't care what season it is; vanilla is always a scent that makes me feel good!

I like to cook to cope!  I just have to be careful. One big problem I have is overdoing things. I have a history of not knowing when to stop. So if your like me, only cook something that will help you to cope and relax you, and when it starts to get painful, or you begin to feel fatigued, STOP!

I love when the sun is shining, and it's warm enough to take a walk with my dogs.  That is so relaxing to me.  I can sit on the swing in the courtyard when I get all tuckered out after the refreshing walk too!

Finally, I love to set an evening routine. I love to wash the dishes in the sink.  The warm water and the movement of my hands with the sponge and the soap bubbles feels good on my hands and wrists. I load the dishwasher, and then I wipe down the countertops, and I feel so calm and relaxed.  It's too bad that as soon as I lie down in bed, every part of my body screams in pain.  Oh well, I guess I can't do something to help me cope with everything! I think I just wasn't meant to sleep at night like everyone else!

Yikes, Only One Week Until My Shoulder Replacement Surgery!...

(This post was presented in ChronicBabe's Blog Carnival May 5, 2010 that was hosted for Patients for a Moment: What's your most laugh-out-loud illness-related experience?   Fellow ChronicBabes answered the question: "What's your most laugh-out-loud illness-related experience?")

Well, I have been seriously preparing everything for my shoulder replacement surgery next Monday--exactly one week away.  I was thinking about everything that has brought me to this point right now.  Wow, what a ride!

I remember when I told my mom that I needed my first joint replacement surgery, my left hip, in 2003, when I was 29. She was so afraid that she kept a good distance from me.  She thought that a hip replacement was a whole new prosthetic leg.  She thought that the surgeon was going to completely cut off my entire leg and fit me for a prosthesis.  She couldn't even come see me. She couldn't face me because she didn't know what to say.  When she did visit me for New Year's Eve, nine days after my total hip replacement, she started laughing in hystarics. I didn't know what to think except that she had lost it. That is when she admitted to me that she was relieved to see that when I pulled off the blankets, it was my actual, original leg under there. LOL!  She is a nutbag.  I like that word because it isn't mean, just funny. When someone does something really goofy, you can call them a nutbag, and you don't feel like you just called them something you will regret at a later date.

I remember when I first was left alone with my hip replacement and my walker. I would fix something to eat in the kitchen. Then I would try to figure out a way to bring the food into the other room...There was no way to do it with the walker.  I would try to balance a tray, or I would just try to balance a plate or bowl.  Then as I would approach the table...BOOM...the food would hit the floor. Jim would come home from work later that day to find my breakfast, lunch and dinner spilled sporadically on the floor from the kitchen to the breakfast room to the living room...

Oh, another great story was that when I actually went home from the hospital after my hip replacement, it was 2 days after my surgery, and I was sent home because it was Christmas Eve, and my orthopaedic surgeon felt sorry for me to be in the hospital for the holiday.  It was cold and snowing, and I was so weak...I had just received 2 pints of blood that morning because I was anemic, and I was already going home...truly amazing...that's modern medicine for you...So, Jim pulls the car up to the entrance of the hospital, and the nurse wheels me out to the car. They very carefully slid me into the back seat without bending my left leg.  Well, while Jim was working on getting me in the car, he had leaned my walker against the wall of the building.  He closed the back door, asked if I was OK, and I weakly said yes. We drove all the way home, taking about 45 minutes in the snow, while I was feeling woozy all the way there. As we pulled into the driveway, I couldn't wait to get into the bed and lie down again.  Jim opened the back door to think about how he was going to get me out, looked up at the front door with the 6 big steps and the steps in the garage by that door that were smaller, and only 4.  He decided to go with the garage steps. He went to get the walker out of the trunk, when he remembered that he didn't put the walker in there afterall.  He had left it leaning up against the front wall of the entrance to the building.  At this point, I was so warn out, nauseous, and even more weakened than at the start of the trip. Now we had to drive another 45 minutes there, and then back again. I didn't want to sound upset; afterall, Jim was my only family living in KY.  Who else would do this for me?  So, he apologized and looked at me as though he wanted to cry because he felt so bad.  We went all the way back.  And yes, it was still there.  No one stole my fancy alluminum walker.  It was top of the bottom line too!  LOL!  It took me about 25 minutes to get out of the car and up the 4 steps into the house.  When I finally got to the bed, I got all covered up and puked very quietly in a basin on the side of the bed so as not to disturb Jim too much. I just still felt so bad about what had happened.  And ya know, we will never forget that day.

So, whatever happens now, I'm prepared!  I have Jim, who will make mistakes just like before.  But ya know what, it makes for great blog stories.  Also, if you can't laugh about it, then what can you do?


When I was told that for my shoulder replacement surgery, I was gonna be under general anesthesia and a nerve block, which is kind of like an epideral but just for the arm that is having the surgery.  I've had it before for my other shoulder surgeries, and I've had the epideral for my hip replacement.  The nerve blocks are crazy things.  You cannot feel that specific limb at all until the anesthetics start wearing off, and when that happens, it is like a heavy feeling.  When I had my hip replacement, and they came into the room to check on me after my surgery, well a number of odd events happened.  First of all, the male nurse asked if he could look at my incision. I lifted up the side of my gown to show him my left hip, but there wasn't a bandage there. I freaked out. Immediately my thought went to that they replaced the wrong hip, so I looked at the other side, but there wasn't a dressing on that side either.  He lifted my gown up on the left side to reveal my buttocks, and sure enough there was a dressing there.  I was so astonished to see a dressing there. I said to the nurse, they replaced my hip through my butt? He laughed and said that I had a very thoughtful surgeon who wanted to make sure I could still wear a swim suit.  So, I'm feeling pretty good, but the epidural hasn't worn off yet, when it should have.  It hung around entirely too long.  They start to get a little nervous and think maybe they should get me up moving to get some circulation to the leg.  That is when I realize that the feeling is there, but my leg is just not the same as it used to be.  When I think, move leg, it doesn't move. I had to put this lassow around my toes and literally lift my left leg out of the bed because it plum forgot how to work. I had to totally retrain it how to move from side to side, climb chairs, and then rebuild the muscles.  It was incredible. I thought it would be a cinch.  And I'm a nurse, and I was this clueless! I can't even imagine being a person with no medical training at all!


So, before I got my hip replacement I was working as a diabetes nurse educator in a hospital in Lexington, KY. I was in a wheelchair because I could no longer walk on my left hip because it had already collapsed (just like my right shoulder now, except I don't do a lot of walking on my hands).  Would you believe that the HOSPITAL was NOT WHEELCHAIR ACCESSIBLE!?  Yes, you read that correctly, so you don't have to read it again.  I would park in the parking garage, and then I would call the nursing manager to meet me by my car.  She would come down and push my wheelchair from my car to the door.  Then she would open the doors and stand there holding it open while I rolled myself into the elevator lobby area in the parking garage.  We'd take the elevator up to the floor we needed. Then she'd wheel me over to our building and open the next couple of doors for me as I wheeled through them. Then we'd take the elevator to our floor. She'd wheel me to my office door, and open it for me, and again, I'd wheel my way on through the doorway.

Well, you can imagine this got old for me and for my boss.  I knew I wasn't going to work like this much longer.  I taught classes in that building at night, when I was the only one in our department.  How was I gonna get out of the building without a hospital guide?  I needed a service dog at the very least.  So I was approached by the nursing manager to take medical leave until I could figure things out.  So I did. I took it for an indefinite amount of time, thinking I would return to the job when I got better.  I never got better. I got my hip replaced, but the other hip still needed replaced at some point. I began having problems with my knees and shoulders and wrists and elbows and fingers and ankles and toes, etc., etc., etc.  They had even told me not to worry that my job would always be there for me whenever I wanted to come back. Instead, I ended up on disability--bummer!  Instead, I ended up with the World's Record of the amount of chronic illnesses one person could get in a lifetime.


This time, what is really important to me is that I will have my mother-in-law here for the actual surgery. That means so much to me.  People don't realize how hard that is to live far away from friends and relatives that you have known your whole life, and not have them there for such a serious surgery.  I get very nervous the day of the surgery.  Up until that point, I'm completely calm.  But there is something to be said about having a loved one there when you go under, with that fear that there is always the possibility that something could go wrong.  Things can go wrong anytime there is anesthesia involved, but I'm getting a nerve block, they are cutting through a huge muscle, and literally cutting through and removing my shoulder and putting in a new one.  CRAZY!!! Even though, I've had this done to my hip, I still cannot even fathom that they did that to me or that it is gonna happen again, or that it will happen several more times in my lifetime, and then revisions will more than likely also occur.  I guess I might as well sit back and enjoy the ride...

Lastly, I'd like to mention about my pain management. So I go today to see my pain management doc.  I was supposed to ask him, per my surgeon, if he was gonna be following me post-op or if the surgeon should do that.  He said that he was gonna follow me normally and not change anything and to tell my surgeon that all the pain management therapy that I'm currently on will continue now, during and after the surgery plus whatever they give me for pain because the therapy that he has me on is my normal regimen for pain control on a daily basis.  My pain for post-op will be separate from that. So I called and left a message with my surgeon's nurse with that info. He calls me back and says that the surgeon is definitely gonna have to call my pain doc because the amount of pain meds that I'm on is more than they have ever seen.  If they add to that, that is an extreme amount of narcotics, and he believes that I'm already on very powerful narcotics.  First of all, let me clarify. I am on the lowest dose of a long-acting narcotic twice daily, and have been on that same maintenance dose since 2002. I am also on a short-acting narcotic that is the lowest dose that technically can be prescribed up to every 4 hours as needed for pain. I have it prescribed twice a day and only take it at bedtime because it makes me sick.  So, how is that extreme!!! When I had my hip replaced I was taking the same short-acting every 4 hours before my surgery, and I just continued it after the surgery, and then weaned myself off it as the post-op pain got better.  When I spoke with my pain doc about what the surgeon's nurse said, he told me he would talk to the surgeon because he was not going to have me go into surgery without adequate pain control, and he was not going to have me come out of surgery in post-op for that matter without adequate pain control!

This is very important info people...communicate with all your docs if you are gonna have surgery...you may be on lots of meds or have lots of different conditions...make sure you know everything you need to know before you go to the hospital that day for surgery!!!

Wednesday, March 17, 2010

Attitude Is Worth A Million Bucks!

(This post was presented in ChronicBabe Blog Carnival #3: Learning to Live with Pain on May 4, 2010.  "Many of us ChronicBabes live with everyday pain. Here are a ton of different perspectives on what it's like to live with pain - and how to do it with style, humor, and panache.")


Yesterday was EXHAUSTING to say the least.  I had my pre-registration at the hospital for my shoulder replacement surgery. I got to my orthopedic surgeon's office at 2:15pm, well 2:30 because I missed the turn and had to find a place to turn around and then make my way back to the office.  I got there a bit past my appointment time then. So already my energy was a bit anxious and stressed out.  I hate driving on Peachtree Rd. in Atlanta anyway. It is a big, windy and busy street with lots and lots of crazy drivers.  People are always crossing the double yellow line.  Just last month someone crossed over the double yellow line and hit someone head on right in front of me.  Not a pleasant sight. Very frightning in fact.  And yesterday afternoon someone decided to make a left-hand turn from the far right land, cutting in front of cars in 2 other lanes! Incredible. So, I was a bit late, but I made it, my blood pressure was high, I'm sure; but I made it!

After meeting with the physician's assistant, my husband and I headed across the street to admissions at the hospital.  We filled out the paperwork--I FILLED OUT THE PAPERWORK!...I met with the clerical person and went over the insurance information and other important billing information.  Jim sat in the chair and crunched on his pretzels loudly and sipped his soda like he had a microphone held up to his mouth.  I thought it would be best for him to leave and head into work.  He kept saying that he wanted to stay. I knew that he really wanted to be there for me, but I also knew that he really did not want to be THERE.  When I was finally called back to the admissions nurse, she told him that he had to stay in the waiting area.  I told him since he couldn't come back with me anyway, he should just go ahead and leave.  So he left...

This huge feeling of relief came upon me.  I know that seems rude, but he didn't want to be there anyway. The energy wasn't good. He was anxious, making me nervous. I really don't mind waiting.  I feel like I spend most of my life waiting--in the doctor's office, in traffic, in line, for Jim to come home from work, for dinner to cook, for Jim to find time away from work, at the post office, at the bank, for the pain to go away, for a birthmother to pick us so we can finally adopt a baby, for my surgery date to finally come, for the other joints to collapse so that they can also be replaced, for a diagnosis, to see if my meds will work, to see how long they will work, to see if the change in my meds will help, for my remicade I.V. bag to be mixed in the pharmacy, to have my I.V. infused over 3 hours, for a taxi, for my surgery date to finally get here (hmmm, I said that one twice), at the vet, for the groomer's to call that Max and Cookie are ready, at the airport--and I really haven't lost my patience.  I have no problem waiting. I know that patience is a virtue. I know that getting all fidgety and nervous will not make you get what you are waiting for any quicker, than waiting patiently.  So I wait quietly and still.  I have actually reached a point where I am content with just waiting.  I don't have to be doing something while I'm waiting, like reading a magazine.  I will read a book, or work on my laptop if there is something that I need to be working on at the time that I am waiting.  But I love that I can actually just be still.  But in this stillness, I pick up on the energy of all those around me that have not adapted to the waiting game, and I lose it! I can no longer just be.  I absorb that nervous energy and become just as anxious!  This anxiety comes out in how I try to control how everything and everyone (even God) affects me and how the outcome will turn out, and this is really difficult for me. For instance, I don't mind waiting for my surgery, but until I have searched and searched for the right surgeon to set the date of the surgery do I feel comfortable. I need to be in control of the search for the physician, or my destiny in other situations.  Now I am working on that.  It is the biggest thing in my life that I'm working on right now.  I want to be able to step back and let go and let God. There are times I believe that we are not supposed to just sit and wait, but help things along, like look for the best surgeon in town, etc.  But then I have to know when I have done enough to help in the control over my own outcomes, and just let God do his job. I have not reached that point yet. As I said, I am really working on it. But, once I know that there truly is nothing that I can do but wait, there are no people to call, no extra footwork for me to do to make sure that everything is on the right path.  And, again, I really think this is because of all the absorbed energy from those around me who are so anxious.  I get that way, when people are driving crazy on the road, even though, I have no where to be and am very relaxed and still. Obviously, this is not my energy, it is someone else's.  So this is what was happening to me yesterday as I sat in the waiting area with my anxious, stir-crazy husband! So that is why I did better when Jim decided to go to work.

As for my time with the admissions nurse, well, it went very well.  The surgery date is still set for March 29th as scheduled.  I have to be there at 9am for a 1pm surgery.  Now, talk about no better time for patience.  That's a long time to wait for your surgery. That is a great time to be still!

She began by going over my history with the medications that I am taking.  As I was going over all of my auto-immune diseases--sjogren's, psoriatic arthritis,--bone/joint diseases in addition--fibromyalgia, avascular necrosis of hips, knees, and shoulders,--and allergies--latex, and some antibiotics...along with many other medical conditions...then the nurse told me she would be taking blood and performing an EKG.  She put a red I.D. bracelet on my right wrist and told me not to remove it for 2 weeks so to have it on when I came in for my surgery.  Wow, that's a long time to wear a hospital I.D. bracelet!  But I will follow instructions.  I just can't submerge it in water.  Can do! No dishwashing, no baths. I will take showers though, I promise.  So, the nurse tells me that in all of her days as an intake nurse, she has never had a patient with as extensive of a history and as many meds as me.  She wanted to know how I did it.  How I did it? I just do.  If I didn't do it, what then?  I have to do it!  I have no choice.  She proceeded to tell me at least 5 times how proud of me she was.  How nice of her!  But she doesn't have to be proud of me, I'm just surviving, persevering in a sense.  Otherwise, life would not be worth living.  I believe we make our life worth living, and if we don't, I think it comes back to us in the end.  I believe that we mapped out our blueprints before we were born, so we decided what we wanted, and what we could handle, so tough tuckas.  If you didn't think you'd be able to handle what was gonna be dealt to you, then you should have thought about it before you wrote it in your plan.

She said to me that she has never met ANYONE with an attitude for life like me. She thought that I should teach a class on how to have a good attitude toward life, no matter what.  She had never met anyone with such a wonderful attitude who was NOT EVEN SICK!  She couldn't even imagine how someone like me could be so happy and optomistic.  I said, "what do I have to be depressed about?"  Then I laughed.  She laughed with me, and said, "that is exactly what I'm talking about.  You should be a life coach, and I'm totally serious!"

Well, perhaps I'll think about this life coach thing.  I do have a lot to offer--tough life, positive thinking, patience, etc.--but would anyone listen to someone like me?....Still, I will continue to keep my postive and happy attitude.  It may not heal my chronic illnesses, but if anything at all, I feel better when I am happy and positive, when I help others, when I'm selfless, when I love others before myself!  I really am a glass half-full, life is full of rainbows, and let the sunshine kind of gal!  I wouldn't change a thing!

Saturday, March 13, 2010

The Pep Talk Worked!!!



So I didn't get up quite as early as I wanted to, but I did get up and go straight to the gym after feeding the fur kids, giving Max his water and his A.M. insulin, and eating some breakfast and taking my A.M. meds as well.

I almost rolled over and stayed in bed, but I knew that I would feel terrible about not going after talking myself up about being able to go. I was thinking so positive before I went to bed, that I just HAD to go!

I began in the hot tub because my right elbow was double its size this morning, hot, and in a lot of pain. I knew that if I just jumped right into swimming, I would just hurt it more. I sat near one of the jets and let the hot water hit my sore elbow. Wow! It hurt like hell! I thought that I might as well kick my legs and get some exercise while I was in the hot tub. I did this for about 25 minutes.

Then I went swimming!!! I swam 10 laps, which is about 1/2 of what I usually do, but my elbow started to throb, and I knew it was time to quit.

Ya know when I swim laps, I basically make up my own strokes because my range of motion is so limited. I take my glasses off and set them on the side of the pool, and basically go back and forth doing a frog-like swim and then keeping the same arm motion as the frog swim, I continue going back with a kicking motion. This changes things up a bit. I can feel it in my muscles, so I know the movements work as exercise. I choose not to go underwater, though. It is just a self-choice. I have goggles, but I can't see anything without my glasses anyway, so why make things even more difficult by putting my head under the water.

I love the peacefulness of being in the water. I know it's exercise, but I almost feel like I become a part of the water. It is such a wonderful feeling. Floating, almost gliding across the top of the water. I am a very delicate swimmer because I used to be a ballerina. It is very obvious in my swimming. I make no noise when I swim, and the water barely moves around me. I never splash any water up out of the pool or up into the air. I swim without a sound--silence...There is something so graceful about my swimming. It's almost like swim-dancing. I am overcome with serenity, peace, and a feeling of being held. It feels as though the water is holding me up. The water will not drop me. My range of motion is so much better in the water. I have so much more energy in the water. I feel like an athlete almost. It is like being taken to another space in time, like another dimension, where I can do all of this with no pain, without needing help, and feeling like I have a special talent or ability. I feel invincible!!

Today, it was very crowded at the pool. I didn't even notice, because I take my glasses off. I can't see anything without my glasses. I am not bothered by all the people in the water or stressed out by all the people waiting for a lane to open up for them to swim in. I just continue to swim in my alternate universe...

Then, I stretch my legs and my feet before I exit the pool. But slowly as I climb out of the water onto land, my true self emerges. I begin to lose my well-balanced body. The muscles and joints begin to stiffen and get sore. I start to transform from a healthy-feeling 35 year old into an aged, 80 year old woman. My limping body makes it's way toward my towel with its past surgery scars on its legs, hip, and shoulders. "Who is this person?" I ask myself...

Just as I'm drying myself off, a dark and handsome young man approaches me. He tells me that I am the most beautiful being that he has ever seen. Of course, inside I am laughing. Me, the most beautiful being? Obviously, HE needs glasses more than I do...I say thank you to be polite. He then proceeds to ask it I'm married. OMG! He is seriously hitting on me!!!

This is when I realized that the way I feel is not what other people necessarily see. Although I do have surgery scars--old scars which are not that visible anymore, although I see them still. I am still beautiful. Imagine that!!

What I learned about today is that if I continue to take care of myself, people will see that I love myself. They will begin to believe in that alternate universe that I believe in when I'm swimming. If I begin to believe enough that I am that person, even out of the water, people will see that beauty. They will feel that love for life, that peace and serenity that I feel when I'm swimming.

I will continue to swim and take care of myself. You can't imagine how good it makes me feel. Also, it's always nice to have a dark, handsome man try to pick you up at the gym when you are at your most vulnerable moment and in a swim suit besides!!!!

Friday, March 12, 2010

Time to Just Be Still...Talk to Myself...Give Myself A Pep Talk!


There are just some days where it is just nice to never get out of your PJ's, and this was one of them. I was not in a lot of pain today. I was more fatigued than anything else--and just so tired...

Sometimes on days like this it feels like my body is rejuvenating itself. It's like a home spa day. I never left the house, but I did go outside to take my fur kids out to go potty.

It has been raining outside today all day, and I'm talking a thunderstorm and flooding, no light drizzle. There were even areas with hail. I for one enjoy listening to the rain, but usually, the body would rather take a pass. Today was not so bad, except I could have slept all day long!

Yesterday was my I.V. infusion day at the infusion center at the hospital. I felt so tired when I left there, and I even took less of the benadryl than usual. I don't know, perhaps my life is just catching up with me. Perhaps all the travel that I've been doing, and preparing for the adoption of our baby, and getting ready for the shoulder replacement surgery, and now with my dog Max's new diagnosis of diabetes--life is just tiring. It seems reasonable. I for one am not a "normal" person either. The everyday stresses of life can be quite a lot for me to handle with all my chronic illnesses. I usually take on too much, with full knowledge. And why, you may ask? Well, I'm a control freak, type A personality, OCD, who tends to overdo everything. I know full well when I'm on the verge of getting overworked, and yet I push it further and further to see if I can get through just a little bit more.

I'm really trying to take better control over myself though. I don't want to wear myself out like this. I am going to do better. I'm in bed typing this post, and then I'm going to sleep. I will not think of anything else to do before going to sleep, except taking my pills of course. Then I will get up bright and early and go to the gym and go swimming. That is what I will do! That a girl! Take care of yourself, Dana! Exercise is good for me, and swimming is great for my joints. I really need to keep up with this until my surgery because when the surgery date approaches, it will be a while before I can do my normal exercise routine again. So yes, I will do that!

Great pep talk!

Now if I could do this for myself every single day, sometimes several times a day, imagine how much better I would take care of myself. Yes, I will do that too! I will begin talking to myself on a daily schedule, several times a day! Add that to my agenda. Now I sound crazy. But no, I haven't lost my mind, I am finally gaining perspective. I have to keep in touch with myself, or I will never get through this waiting...

Then, I will totally lose it when the day of the surgery arrives...

Again, great talk, Dana! Let's do this again tomorrow! Good night, and sweet dreams!

Wednesday, March 10, 2010

Looking Toward The Positive!



Everyone has always told me my entire life how I am such a positive and happy person. I truly believe that I am a positive person, but being positive doesn't mean that I always have to "put on a happy face." Having a chronic illness makes it especially difficult from the moment I wake up until the moment I try to go to sleep at night. I am happy; I do love the life that I have with my husband and my two adorable fur kids; I actually wouldn't change a thing. But there are days that smiling is so hard when I'm concentrating on just walking or using my hands or when my joints are so swollen that I can only stay on the couch in my Jammies all day curled up with my fur kids and my blanket, watching the Lifetime Movie Network.

Still, I enjoy passing it on. Ya know that feeling when you smile at someone, and they smile back? When you nod at a passer-by, and he/she nods back accepting you as a caring, happy person? I even rolled my window down today as I entered my apartment complex to address some of the kids who had gotten off the bus. I had seen them before, but they don't know me personally. I'm just the kind of person that always thinks that people should know me. I believe the world could someday be that place again where we can leave our front doors and windows open and not only feel safe but be safe. Well, anyway, it was raining heavily, and I asked if they wanted me to drive them to their apartments. They looked at me like I was that crazy lady that everyone knew down the street that they avoided at all times. The kids said "no that's OK." I replied, "oh, mom told you not to go with strangers, and I'm a stranger. I get it. Bye then." It actually hurt my feelings, ya know. I honestly am one of those people who would never hurt a child. I only have good intentions at all times. And that's the truth. It's rare, but honestly, it's the truth. If you knew me, you'd understand. When we lived in Kentucky, we were the safe house. Kids could come to our house if they got locked out or missed the bus, etc. I forget that people don't know us that way here. I tried to offer help to the young boy that moved in next door with his mom. He had gotten locked out when he came home from school and his mom wasn't home from work yet. I took my dogs out to go potty. When I saw him sitting outside his door with his backpack, I felt badly for him. I asked him if he was locked out. I asked if he wanted anything like a drink or a snack until his mom got home. He said "no." I said he could even come inside if it was taking a long time. I told him it was only me and my two fur kids, and that my husband wouldn't be home for a while. I said that if he needed anything at all to just knock. But again, he didn't know me.

We are in the process of adopting a baby, and I just can't wait to bring him or her into my home. But I love all of God's children. I'm here to help if I can in anyway. I am always available to offer a helping hand, but it is so hard to help a child with the way the world is today. Parents HAVE TO teach their children not to trust other adults that are strangers. I get that. I will be the same way as a parent. I just wish that all people could see through people to know if another human being has good intentions or intentions to do harm. It would make life so much easier.

If people could see through people, they could also see that on those days that I'm not smiling, that I'm actually very content with the path that my life has followed. I just happen to be in pain today. And I don't mean that I have a little headache. I mean that every joint in my body HURTS. EVERY PART OF MY BODY I CAN FEEL! Yes, I am having trouble concentrating on what you are saying to me because I'm having trouble hearing you over my knees right now. They are SCREAMING OUT at me right now. How many people can say that parts of their body are actually screaming at them? No one else can hear my body calling out to me for help. I am doing everything possible to quiet my pain. Medication, warm baths, heating pads, exercise, massage, alternative therapies like healing energy, meditation, EVERYTHING... Still, the constant yelling and screaming doesn't end!!!

Today, I had an appointment with my counselor, whom I see every Wednesday at noon. I suggest that anyone with a chronic illness do the same. It helps to talk it out. If your body isn't listening, a counselor will at least hear you vent. They won't complain about it either! Today, I just felt the need to cry. Yes cry! I'm not sad. I'm not depressed. I'm actually happy. Yes Happy! So why am I crying, because I'm in pain, and it helps to cry sometimes. It's a release. It's harder to smile when the pain is so bad that you need to cry. Once I cry, I can then smile to the world.

I know what you're thinking, "isn't smiling a facade?" No it's not. I'm smiling because I want to smile. I want people to know that I am actually happy. As an emotional, mental, feeling person, I am happy and want to smile. If I were only a physical entity, then no, I would definitely not smile. I would only be a deteriorating, crumbling, "35 year old stuck in an old person's body", with a structure that is slowly falling apart. Wow--that is horrible! But that is not who I am. I am so much more than a physical being. God made me a feeling, thinking, and healing person too! Those parts of me weigh so much more. I am happy to be that "me." I am a wonderful person, and I should be proud of who God made me to be. People enjoy being with me. I enjoy being me!

So why not smile! Why not look at the positive even if it is something very, very small? It may be that I got out of bed today. It may be that my pain level was a 5 instead of a 10. It may be that I could go to the gym and swim without any extra pain. It may be that I was able to go to Target and shop without getting too fatigued. It may be that I got to visit my dear friend in KC and be with her and her family for a week and just be. It might be that I was able to make dinner. It might be that I was able to take a walk. It might be that I was able to shave my legs. It might be that I was able to attend a meeting at the Arthritis Foundation. It might be that I was able to go in to help a pregnant woman today at the pregnancy center that I volunteer at once a week...ya know it just might be that I just want to smile!!!

Ya know many times being positive not only brings out the positive in others, but helps me to feel better too. I focus on other people and other things, happy and good things, and not on my pain and fatigue. That can't be at all bad, ya know. I think it's fantastic, and I definitely won't stop smiling!!!!

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