Dancing with My Disabilities!

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

Blog Title: Dancing with My Disablities!

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

Blog Title: Dancing with My Disablities!

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

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

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

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

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

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

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

Blog with Integrity

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Sunday, April 3, 2011

Help Me If You Can...I Do Appreciate You Being Round...Even If I Don't Always Act Like It!

For this blog carnival, it's our take on help. How do we  help ourselves, get help from others, or even recognize our need of a little helping hand? How do we feel about asking for help or getting some when we haven’t asked for any? Let's explore this topic. smileyIcon

Oh wow! Where do I begin with this topic? Help, I need somebody! This is so difficult for me. I am so independent. I am such an advocate for people with chronic pain and chronic illness that I lose sight of what I really need~HELP! 

The difficult part of this topic is that no matter how independent, self-assured, and secure we are, there is always a time in our lives when we feel down, fall down, have a door close in our face, and go through a life-changing event. For me, pain is constant and daily, so I have learned to live with it as a part of my life which is good and bad. It's good for me because I have learned to deal with life as a person with chronic pain, meaning that I know how to make plans and choices that fit my lifestyle. It's bad because those plans and choices will likely change in an instant. When those plans and choices have to change due to extreme pain days, weeks or months, it would be smart to ask for help. However, the stubborn side of me will almost never ask for help. It's not that I don't want it or need it. It's not that I think people like family and friends should be able to read my mind and automatically know when my pain is so bad that I have to start canceling things. I always feel like it makes me weak. Silly isn't it. The reason I think this is a silly thing is because here I am living with several pain conditions daily, which makes any person that does this strong, but I can't find the courage inside me to ask for even a little help.
This week, I was so stressed out. I went off my fibromyalgia medication. The pain was severe. I was so tired and fatigued but couldn't sleep. We have a 3 1/2 month old. Need I say more? Actually, I will give you a little more info. My hubby, baby and myself all live 9 1/2 hours away from any family member. We mostly hang out here with the hubby's friends from work, which have in turn become my friends, and I have made a few friends of my own as well. I feel bad asking people from his work for help because I don't know them that well. I also hate asking friends for help because I would rather help them. So that leaves the hubby. I guess I got so stressed out from not asking anyone, including my own spouse, for help that I lost it. I told my hubby that I couldn't do any of it. It was too hard. I was behind with getting bottles made, doing laundry, running the dishwasher, going to the store, sending birthday cards out, making meals, and putting stuff away. I couldn't or wouldn't even admit that it's been months since I cleaned, dusted or vacuumed the house! I was wearing the same clothes for the third day in a row and hadn't showered in I don't know when. I needed help!

He literally said to me that he couldn't believe how helpless I had become! I was furious! I was not helpless, and yet I was because I wasn't asking for help! I don't know if I ever looked at the word that way before, but at that moment I did. I was helpless. I was not taking any one's help or asking for any one's help. I was helpless! He told me that he wasn't a mind-reader. He couldn't tell what I needed help with unless I asked for it. Ah! That is the secret behind asking for help, you see. Help doesn't just come to you. You must get the courage up and ask for it. He told me that he just assumed that I had everything under control and didn't need any help. He said that on the outside looking in, I appear to have it all together. Hmmm...interesting, to say the least. It's kind of like our pain conditions. We look just fine from the outside until we let people know!

I realized this day that I had it out with my hubby, after he called me helpless, and then I felt hopeless for a while until I really got my senses together. To ask for help will only help keep us independent. Here is where I'm going with this...If we don't ask for help while our world is crumbling around us, and we lose all sense of reality until someone has to literally take over for us, that is not the answer. If we see that the foundation is beginning to crumble, we should ask for someone to please help us to strengthen it again so we do not fall apart and lose everything that we ever were or ever worked to be. It's kind of like when you press the refresh button on your computer!




Wednesday, March 30, 2011

"I'm Thankful to See The Next March 29th!"


This is in Chronic Babe's Blog Carnival # 26, "I am thankful for..." Last year on this day, March 29th, 2010, I was at Piedmont Hospital in Atlanta, GA on my first night of recovery following right shoulder replacement surgery. I am writing this post on March 29th, 2011, thankful that I have made it a full year with a wonderful new shoulder! I wouldn't be here today if it weren't for such a wonderful orthopaedic surgeon. He is the best in town, and that is why I picked him. My shoulder had collapsed in Oct. of 2010, and I waited until the end of March that year for that particular doctor to replace it. I could have had another orthopaedic surgeon from another group do it sooner, but I chose him! Thank you, Dr. D! I also would like to thank my wonderful friends from the Young Professionals Arthritis Group. They had brought me food as I recovered. Thank you dear friends, and you know who you are, Susan, Ang, Carlene, Kelbi and Michelle for being wonderful company to talk with and for taking me out when I was stuck at home and couldn't drive yet.

There is so much to be thankful for in this past year. With this shoulder replacement, I was able to get back into an exercise routine that helped me to get my strength back. It helped me to get a routine. Not even 7 months after my shoulder replacement, we were matched with a birth mother! What a wonderful gift to get well for! Thank you to that family for choosing my husband and I to raise Michael. I don't think I have ever been more thankful for anything in my life. With my health on the up rise, I could look forward to being a mommy for the first time in my life!

Although we had our rough times preparing for Michael to come home to us--meaning that the birth family almost changed their minds when they found out I had arthritis. They almost decided against my being Michael's mommy for fear that I couldn't do it because of my joint problems. So thank God for my Dr. W! He agreed to speak with the birth family to let them know that I would be a good mom, and that my arthritis would not prevent me from being able to raise Michael. So thank you, thank you, thank you, Dr. W!!!! I will never forget what you did to change our lives from husband and wife to daddy and mommy!

Thank you so much for all of the support that I have received online. Who would have guessed that people that I never met and probably will never meet in person would have given me so much encouragement and also have made me realize that blogging isn't just for me, it helps others. I am so thankful for all of you out there in cyberworld that have read my blog and have commented and given responses and replies. You have helped me to use my blogging and now Blog Talk Radio to help others in their journey to help themselves by helping others just by telling their story, and by helping themselves by the sheer joy of knowing that you helped even just one person with your story! What a wonderful feeling!

I am thankful that I decided to blog about the pain of waiting to have my shoulder replacement because had I not done that, who knows where I would be today~one year and a half since I began my blog! So thank you all my followers, friends, doctors, cyberfriends, facebook friends, chronic babes, and family that has been there for me and I for you! Remember, if it weren't for you, there would be no blog, and if it weren't for me, this blog would suck! So my story of my struggle has brought humor, love, pain, sadness, and most of all a great read for you all! Thank you all for listening and being there! Hang in there because ya never know when the next joint will need replacing!!!! Blessings and healing to all of you out there!

Tuesday, March 29, 2011

A Note to Us (Body, Mind and Soul):

A Note to Us (Body, Mind and Soul):



I thought that we had finally reached an understanding. I know that you will sometimes have days when your muscles will tighten up so badly that you can't move them. You will still wake up every single morning with stiff joints that will get better as the day progresses. I know that there are still some unknowns like when the other hip and shoulder will collapse and when both knees decide to totally give up and collapse all together. But what is up with you right now?

Why are you not communicating with me again? We were doing so well for a while! We were able to work together to eat well, exercise, and enjoy life. Now, you are sending out these strange new symptoms from the Body to the Mind and it is really irritating to the Soul! There are hot flashes, sweats, an increase in blood pressure, tachycardia, a decrease in sleep but an increase in sleepiness and fatigue.  The Mind gets these symptoms from the Body and automatically thinks it's something hormonal! Is it something totally new?  Is it menopause or my thyroid? Have we put on weight? Oh my, we have gained 25 pounds in 6 months!!! OK, why has the body put on so much weight? The Mind is obsessed over the weight gain! It is becoming too much for the Soul, for our spirit! It's upsetting us and making us depressed! 25 pounds isn't good for our joints, ya know. We are trying to conserve what we have here!


OK, the doctor said it isn't menopause or the thyroid. Let's really think about it...What is different? 7 months ago, we started a new fibro med, Savella. We looked up the side effects and to our amazement, they are all of our problems except weight gain. Now there are people that have said they gained weight on it. It is an antidepressant, and they do cause weight gain in some people. These particular side effects from Savella that we're experiencing are actually adverse reactions!!! Don't stress, don't stress, don't stress! We will wean ourselves off it. That is the responsible and right way to do it. So we begin...


What are we doing? We are having withdrawal symptoms coming off Savella. We wouldn't be having these symptoms if we tapered the dose, but instead we stopped taking it cold turkey. We did think about it for a good 15 minutes. We went through the pros and cons. We decided to just stop it because we became afraid of all the cardiac symptoms that we were having. We wanted them to stop. We didn't want to have anymore harm done to our heart than what may have already been done! So we just stopped it. To rationalize what we did, we thought about if we had been allergic to the medication, we would have just stopped it; wouldn't we? Now tomorrow we see the pain doctor. What will he tell us? Oh dear!


We just want to feel better. We want to be able to go to belly dancing class again next week and to attend aqua aerobics without feeling dizzy. We were feeling so good. The reason we went on Savella is because the migraines came back so we went back on the migraine medication. By doing that, we went off the medication for fibro and went on the new medication for fibro, Savella...and here we are today.


We are a mom now. We have a 3 1/2 month old baby boy. We must all work together and be on the same page to be strong enough to take care of a new baby. He is getting so big, and we must be healthy to hold him and carry him around the house. 


We are a team. Remember what it was like just 6 months ago when the team was working so well together. We were the right weight. Our joints did not ache every time we bent over and picked up Mick. Our fingers did not stiffen every time we tried to put his diaper on. 


Come on Team Dana! How can we get the team back? When the withdrawal symptoms are better, let's start exercising more! We already walk together. We already attend aqua aerobics together. We signed up for our next belly dancing class that begins next week!


Come on Team Dana! Let's work together Mind, Body and Soul! 

Dear Body, please tell the Mind when you need more help with your symptom checks. Dear Mind, please look toward the Soul to give you strength when you begin to feel depressed and confused by the Body's symptoms. Dear Soul, please do not give up on the Body and the Mind because we need your Spirit to keep us in check! We need all of you to keep Dana all together as a whole person. 



Thank you so much! Hope to hear from each of you soon (Body, Mind and Soul),

Love,
Dana



Friday, March 18, 2011

I Can Be a Mommy & Have a Chronic Illness!

In Chronic Babe's "I can do it!" we talk about something you thought chronic illness would never let you do until you mustered up the courage and went for it.

As you know from following my blog, my hubby and I had been trying to adopt a baby for about 6 years now, and you also know that I have several chronic illnesses that cause pain, fatigue, disability and joint replacements (among other things). Well, I have always thought of myself as a brave person and a strong woman. I was strong long before the chronic illnesses became permanent, so at least I had a good foundation! I never realized how strong or how courageous I truly was until my body tested me to the extremes, and daily life became more and more challenging. I realized when I became so overwhelmed that I just needed to step back and take a good look at myself. I had gotten overlooked. It was awfully foggy at the time and hard to see ME through all the CHRONIC STUFF! When I finally took a good hard look at myself, I realized that I didn't change at all. My health changed. I was still the same Dana that I had always been; well, I was a bit more experienced and a lot more educated about the world. I didn't realize that of course until I saw myself again for the first time.

I still had the same hopes and dreams; the same values; the same beliefs; the same goals. I had to tweak a lot of things to fit a newer, different lifestyle, but above all, I found out that I can accomplish anything and everything I set out to. Now I have to constantly tell myself, remind myself if you will, that things that once were accomplished easier, faster, and more directly are now done more slowly, carefully and what seems to appear as a more round-about way. It is an amazing discovery! I can have chronic illnesses, have goals, accomplish goals, and not lose sight of ME! I love it.

So what is so important about this. Well to me, and to all of you with similar issues, when you become Chronic Illness instead of Dana, that actually becomes your identity. You lose yourself. You lose that want for life, to live for anything including yourself. I'm not even being extreme. I'm not even talking about suicide or anything like that, although it could get that bad for some people if you don't find yourself quick enough. For me, I lost who I truly was--my spunk, my love to laugh, to dance, to see the beauty in things, and to want anything for myself.

When my hubby and I were married, nearly 11 years ago, we vowed to have a family. We new we wouldn't be complete without children. That was something that we wanted for ourselves for so long. Although, we continued to go through adoption agency after agency, the foster care system, and even adoption facilitators (as well as advertising with a facilitator online), a part of me thought it would never happen after approaching the 6 1/2 year mark. I began to fear that maybe it was God's way of telling me that I "couldn't" do it, I "couldn't" be a mommy.  I started to bury the goal beneath the chronic illnesses. We signed with a new adoption place in December of '09. I started to come out of the fog and realize that I needed to start working toward that goal, to be a mommy. I knew if I didn't find that hidden "mommy" inside me, she would be lost forever. I knew I didn't want to lose that want. It was something that was highest on my list of goals. We made a promise to ourselves and God on our wedding day to have a family, and here I was, 35 years old, still childless!

The moment we began with this adoption place, filled out paperwork, had our physicals, got our fingerprints and background checks, and did our home study, Dana had surfaced! I once again was getting those wonderful "mommy" feelings!  Thank God. We waited and waited with this place to be matched with a birth mother.  It felt like eternity! I knew there was a baby out there for us, and that was a good sign to me that I was hopeful once again to be a "mommy." We right away put the nursery together, decided on a theme (forest animals), began decorating, and we bought our first baby layette of bath towels and onesies and set it in the nursery. Jim put the crib together. We made our photo album up to handout to birth mothers that fit our preferences. We were open to any gender, up to a year old, any race or creed and a sibling up to age 8 as well. We began to prepare family and friends. We had our website put together and were linked to as many as 15-20 other websites. We even made a video welcoming a birth mother and baby into our home. I painted a gigantic heart tree and hung it behind the crib. We waited...

The most important thing here is that the waiting wasn't painful. We prayed a lot and had faith that there was a baby out there for us. We thought the baby would most likely be of another race because of statistics, so we prepared family and friends for that. And we waited...patiently...I actually had something in my life to wait for, to dwell on, to pray about besides my chronic illnesses. It was a welcome change of pace.

Then, when it felt like time had stood still, we got a phone call in October, the week before my mom's birthday. A birth mother and her mom had chosen us to parent. Wait a minute...What did she just say? OMG! The first thought that came to mind was, already?  After 10 months with this adoption place, I suddenly felt like we hadn't waited that long. I know, too funny, right?!  Jim was out of town at a university outside of Philly for the weekend. He hardly ever goes out of town, but he was attending a conference. He was in the middle of a Nor'easter as well! It took him 3 hours to drive 70 miles! I hadn't heard from him in hours. I was worried and excited all at once. I didn't want to call him while he was in a storm, so I waited for him to get to his hotel.  I didn't want to make a decision to speak with the birth mother and her mother without talking with my hubby first about the situation. It's only right; after all, we are a team!

I explained the situation to Jim who safely arrived at the hotel. He was so excited as well. The next day, the birth mother's mother called me at home. We spoke for two hours on the phone and hit it off well. Then I spoke briefly with the birth mother. She was very sweet. I told them that they could speak with Jim when he returned home. They agreed, but felt so far that they wanted to go ahead with this. I also agreed. Jim talked to the birth mother 2 days later. It went well. We talked all 3 of us for a while on speaker phone too. We laughed about Jim playing sports, and whether or not Michael would be a good athlete or not. She wanted us to name him Michael Robert. We agreed. We agreed to raise him Catholic like ourselves, to say the rosary, to send pictures of him to the family. We had no problem doing this. Michael was going to be our son!...

Meanwhile, our last name was leaked somehow by the adoption place. We don't know how, but what was done, was done. They googled me and found out that I had several chronic illnesses--joint diseases. Our adoption coordinator contacted me to say they were having second thoughts. I was devastated! Was I right in the beginning to think I couldn't be a mom? Was I not cut out to be a mom after all?  When the birth mother's mother called me, she said some awful things to me about my illnesses and my inabilities to be a mom to Michael. She obviously didn't realize that there are people who are great moms who are in wheelchairs, who don't have the ability to use their arms, who can't walk, who are blind or deaf. To some, these are seen as inabilities to be a mother, but to those that are moms and "can do it", they are just differences. They take care of their children but find other ways to reach the same outcomes. I couldn't think of how to change their minds. I felt so hopeless and helpless, I felt myself slipping back behind the chronic illnesses again. I began to lose Dana and the mommy I was to become in less than 2 months. Think fast! What to do? I offered to fly up to meet them. I offered to have my rheumatologist call them and let them know that I am perfectly capable of taking care of a child...

They just needed time...

Time for me at that moment just made me slip further and further behind the cloud...Then the phone rang. They agreed to speak with my rheumatologist. I don't know what he said to them, but after I arranged for a time for him to contact the family, 24 hours later, the birth mother's mother called and left a message for us to contact her. We called back immediately.  She said that they thought about it all, and they picked us for who we are as a family and how we will raise Michael. Anyone can get sick or hurt at anytime, and we have no control over it, so they wanted us to parent Michael. We said thanks and that we had prayed so hard over this. We felt so connected to Michael already, calling him Michael to everyone we know. He had a name, he was our son already! The phone call we received was the weekend of the feast day of St. Gerard Majella, the patron saint of childbirth and motherhood, also my mom's birthday. Michael was due on the Immaculate Conception. We prayed to St. Anthony every single day for a miracle. All of a sudden, we received a wrist rosary with St. Anthony on it, then a St. Anthony key chain, and while visiting friends in Boston, I looked in the directory to find the nearest Catholic church. 2 minutes from our hotel was the Shrine of St. Anthony. We lit a candle there and said a prayer again for a miracle!  Also, our hotel # was 128, which was his due date 12/8. The birth mother and her mother gave us a gift of a picture of the Holy Family: Mary, Joseph and baby Jesus. We were still in the hotel for the feast of the Holy Family because we were out of town the entire holiday season.  We found out also that the birth mother's middle name was Mary and the birth mother's mother's middle name was Joe, so Michael was like Baby Jesus at the Inn! So many wonderful religious significances in the birth of our baby. We are going to baptize him June 26 which is the weekend of the feast of St. John the Baptizer! Might as well keep with the theme!

Ok, so speaking of theme; I found out that I can be a mommy! I am a darn good mommy. I am home with Michael every day while Jim is at work. I have been feeling great. I am able to do everything that any other mom can do, but sometimes I just have to go about it a different way. I might have to lay him across my lap or carry him in sling. I might have to prop him up on a pillow and feed him a bottle that way. I might have to have Jim open the formula cans so I can pour it into the bottles. Some days, we have lazy days together where we lay in bed together and play in bed. He has adjusted well with his mommy and her chronic illnesses. Ya know, that is the only way he knows it after all. It is normal to him. I change his diapers just fine. As a matter of fact, as long as the supplies are all laid out so I can easily reach them and get to them, we get those messy poopy diapers taken care of in jiff!  We have lots of fun together. I am enjoying being a mom so much. Thank God I didn't keep Mommy Dana hidden behind Chronic Illness. I am so much more than that!

Our big adventures are going to the Farmer's Market together, doctor's appointments (he knows all my doctors now), and taking walks with the stroller and his furry brother Cookie! Life is so beautiful again! I'm so glad I have Michael to share it with, to teach about life and love, and to understand about people with chronic illnesses. He will be such a compassionate and understanding person because he had ME for a MOMMY! All because I decided to search for myself again!

Thanks for listening!

Wednesday, March 16, 2011

Guilt Is a Real Symptom!


There are so many symptoms of chronic illness that seem to cross over from one disease, illness, syndrome, etc. to another.  Focusing on pain conditions because that happens to be my specialty, chronic pain conditions tend to come with fatigue, pain, loss of sleep, depression, and other widespread symptoms as well as vague symptoms that many don't even know to list as a symptom that go with chronic pain conditions. One hidden symptom that may get overlooked by the person with the chronic illness and by those around him or her is guilt, yes guilt. Now, you may ask how guilt is a symptom and not just an emotion, a feeling, or a result of being sick...so allow me to explain...


Every single day with a chronic pain condition, every decision we make, every place we go, every step we take has consequences. And we know very well that these consequences do not only affect ourselves. Yes, we would love if each decision didn't lead to another, and another, and yet another, but that is how life is. We may plan for certain things, but we all know that planning doesn't always mean a thing when it comes to a chronic illness. We never know when pain, fatigue, exhaustion, or pure overplanning can occur. We may wake up with a day that is a better pain day, but by the time we leave our house, it has shot clear up to a bad pain day. It is not our fault; it could be the weather, stress, or that we have a cold on top of our chronic condiiton. A real problem that occurs with all of this planning and pain, etc. is that we have to tell the friend that we were going to meet for lunch that we are going to have to cancel or reschedule for another day, that we just can't make it today. We might not be able to spend that extra time with our baby or child because we need to have a lot of extra resting today. Maybe you have a baby that you can't hold as much today or a young child who wanted to go to the park to play, and you had to tell him that you have to do it on another day when Mommy is feeling better. Maybe it was an important work day because you were in charge of running the meeting, and you had to call in sick, and worse yet, your boss had to take over your meeting for you.  Maybe you are a religious or spiritual person, and you just can't make it to the church service today because it is so hard just to get going that you know you won't be able to stand up during the service. What do all of these scenarios have in common? The answer is GUILT! Yes the hidden symptom of chronic pain conditions. We don't always see it, and people on the outside looking in don't always see it either. Guilt is a symptom that can actually cause you to feel even worse. You may think there is no way you could possibly feel worse, but you definitely can.


I have felt the guilt build up within me when I have had to cancel on the same friend numerous times. You begin to think that friend must not understand. She must think that I am just bailing on her because I don't want to be with her. It hurts us just as much as we think they hurt because we cancel on them.  We are dying inside dwelling on it over and over again. Will she ever believe that I want to go to lunch with her again? Will she think I am faking? Does she think I am really sick or that I just don't want to be with her? It is awful what it does to us. I have had the guilt of having pain and fatigue and being unable to hold my infant son as much as I'd like because it hurt too much, or my arms were too weak. I felt like he knew something was different. I felt like he thought I didn't love him anymore. It just tears at your heart! You find other ways to be present, to show your love and to play with them, but it isn't the same as holding a little baby in your arms.  They are so sweet and innocent, and hopefully they have never felt pain like you have felt, so they do not understand why you won't hold them when they cry. Instead, you console them in different ways. You lay them on your lap, put them next to you and talk to them and touch them. But the guilt is too big to tuck away.  Although you can't see it, it surfaces in other ways. It causes a pain so deep within your heart, no pain meds can reach it. It can't be measured on a pain scale either!  My son is only 3 months old, so I do not know what it is like to make promises I can't keep to a young child who may want to go to the park or something similar, but I can certainly imagine what it would be like when my son is older.


I do not work anymore, but I did have the guilt of missing work, important dates that I was supposed to be there and had to have someone cover for me because of my illness because of my surgeries. I felt so much guilt! Also, I am a very spiritual person. I love to go to church on Sundays and holidays. When I can't because of my illness, I feel so guilty. I think that God gave me so much, I should be able to go for an hour to thank Him. And yet, I cannot! The guilt is incredible.

Guilt is real. It hurts. It is a symptom not a feeling or an emotion. We cannot ignore it. We must work through the guilt because if we don't, we will find ourselves getting sicker. It is not something that we can hold on to. It will find a way to surface because although it is an invisible symptom, it cannot stay hidden forever!

Monday, February 28, 2011

Inspiration in The Face of Adversity!


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

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










Our Health Care System

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


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

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

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

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

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

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