Blog Title: Dancing with My Disabilities!
This blog was I Already Gave My Right Arm to Be Ambidextrous prior to Read My HIPS, which is now Dancing with My Disabilities. I am doing some renovating and will begin blogging for the New Year 2024. Please be patient, and please continue to support this blog as well as my other blog Chronically Mommy, which is also being renovated to be more up to date. Pass this information on to anyone that you know may be interested in knowing...To be continued...
Dancing with My Disabilities!
Title: Dancing with My Disabilities!
I had my shoulder and both hips replaced, and I am changing things up a bit on this blog! I began belly dancing in 2010! Yes, you read that correctly!! I am going to be blogging about my experience as a woman with several joint diseases and conditions who had her shoulder and both hips replaced who now belly dances, dances hip hop, performs, teaches dance to children of all ages and abilities, teaches belly dance fitness classes to adult women, teaches chair belly dance movement classes to people with mobility issues and disabilities, and takes a Pure Barre class as well! I still have pain, but I want to blog about how I have fun too! Please read Chronically Mommy (chronicallymommy.blogspot.com) for info on health/pain and being a mom to a 13-year-old son. I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, axial spondylitis, Sjogren's, fibromyalgia, hEDS, POTS, MCAS, vascular/ocular/hemiplegic migraines, pseudotumor cerebri, trigeminal neuralgia, occipital neuralgia, endometriosis, and chronic shingles. I found out that I have autoimmune arthritis in my cervical spine and a bulging disk in my lumbar spine. Fourteen years ago, my spine orthopedic surgeon told me I had a small amount of inflammatory arthritis in my SI joint. The question was if the spinal involvement was due to Psoriatic Spondylitis, which is a more severe form of Psoriatic Arthritis or is it a new diagnosis of Ankylosing Spondylitis? Now, they have an updated term, Axial Spondylitis, which fits my symptoms and diagnostic proof. Whatever the diagnosis, the treatment will remain the same. I had my left hip replaced in 2003; my right shoulder replaced in March of 2010. I gave my right arm to be ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012, and I began belly dancing two years prior to my right hip replacement surgery. Yes that's correct! I began belly dancing in 2010, just after my shoulder replacement, before my son was born. I performed for the first time in 2012, five days prior to my right hip replacement surgery. Pain is still another part of my life. It is just a question of when, where, and how much, but I would like to use this blog to write about my experience as a woman with several joint diseases and conditions who had both hips and a shoulder replaced and now spends her free time dancing, teaching, and performing! I began dancing with a troupe in February of 2014, Seshambeh Dance Company. I now take a Pure Barre class on Monday mornings, teach ballet, tap, and creative movement on Monday evenings to children of all ages and abilities, take a hip hop class with all adult women on Tuesdays and Wednesdays, teach a belly dance fitness class on Thursdays to all adult women, and teach a chair belly dance movement class to people with mobility issues and disabilities as often as I possibly can. Join me in my journey! At times, I take 16 to 20 pills a day. I give myself an injection each week on Fridays for my autoimmune/autoinflammatory arthritis diseases. Just when one thing is doing better, something else goes downhill! My attitude, however, is always going uphill! I am 49 years old, have been married for 24 years, and my husband and I adopted Mick in Dec. of 2010! I have a lot on my plate right now, but I take it one moment at a time. I believe that God will never give me more than I can handle. However, I do need to learn to ask for help sometimes instead of always doing it by myself!
Blog Title: Dancing with My Disablities!
Formerly Now Read My HIPS, and before that, I Already Gave My Right Arm to Be Ambidextrous.
Help, I need somebody, Help, not just anybody, Help, you know I need someone, help.
When I was younger, so much younger than today, I never needed anybody's help in any way. But now these days are gone, I'm not so self assured, Now I find I've changed my mind and opened up the doors.
Help me if you can, I'm feeling down And I do appreciate you being round. Help me, get my feet back on the ground, Won't you please, please help me.
And now my life has changed in oh so many ways, My independence seems to vanish in the haze. But every now and then I feel so insecure, I know that I just need you like I've never done before.
Help me if you can, I'm feeling down And I do appreciate you being round. Help me, get my feet back on the ground, Won't you please, please help me.
When I was younger, so much younger than today, I never needed anybody's help in any way. But now these daya are gone, I'm not so self assured, Now I find I've changed my mind and opened up the doors.
Help me if you can, I'm feeling down And I do appreciate you being round. Help me, get my feet back on the ground, Won't you please, please help me, help me, help me, oh.
I'm kicking off World Arthritis Day with a look back at when I really began having symptoms that made me ask questions and seek advice from my doctor. I began to put things together and wonder if different symptoms and things that I had in my childhood that were showing up again were chronic conditions. I wanted to put a name to the way I was feeling. I knew there was no way I was wearing myself out with just my normal day-to-day activities and a lifestyle of no smoking and no drugs (I'd love to say no drinking, but I was in college at the time and was experimenting with drinking beer at parties and then going to class at 8 a.m. the next morning). So If you asked me when my onset of my autoimmune arthritis symptoms were, I would have to say that when I began college is when my body really started going crazy! I remember that during this time, I had several severe kidney infections. I had a staph infection that somehow decided to land in my outer ear and earlobe. My ear became double its size and filled with fluid. It was like all the poison was waiting to take over my body! I began having severe stomach problems. I always had problems with my skin. The next year, I had mononucleosis and missed an entire semester of school. I never got out of bed. I basically slept through a semester of my Sophomore year.
Then, my Junior year, I was hospitalized for unexplained fever, joint pain, and abdominal pain. Of course they found nothing. Figures.
Although I had been dealing with symptoms and vague chronic pain issues since I was a young child, my general health began to go down hill when I started college. I went to four years of college, and with each year that passed, my health became more challenging. I went to college from 1993 to 1997, and I sadly have to admit that during that time, no doctor was able to pinpoint what was wrong with me. Each doctor just thought there were many small things happening in clusters at the same time, which made it seem a lot worse than what it actually was. I began college when I was turning 18. I was still just a child! I didn't realize the importance of knowing my childhood medical history. It would have helped with a much quicker diagnosis. I wasn't diagnosed with my autoimmune arthritis until later as an adult because I didn't know all the details of my childhood medical history. It turned out that I had Psoriatic Arthritis, which led to a later diagnosis of Psoriatic Spondylitis or Ankylosing Spondylitis. It depends if it is in addition to the PsA or a part of the PsA. I was also diagnosed with Sjogren's and EDS. My diagnoses were not made until between 2002 and 2004. If I had known that I had Psoriasis as a child, that my mother also has Psoriasis as well as my brother, the diagnosis may have been made when I was a young child. Instead, I didn't seek a doctor to give me a diagnosis until the 90's, and it took nearly a decade to diagnose me.
There is a huge debate right now over whether or not being over weight can lead to autoimmune arthritis. No, it can't! It is that simple. There is plenty of information out there people. Read it! Osteoarthritis is different from autoimmune arthritis. Osteo is caused by the overuse or wearing down of the joint/connective tissue. Autoimmune arthritis is when something in the body causes the body to attack itself! It depends on what type of autoimmune arthritis it is to know what part of the body will be damaged.
I get very upset when people talk about moving your joints to keep them in shape or from getting arthritis. Don't be overweight and you will avoid autoimmune arthritis. These are terrible ways to educate the public about autoimmune arthritis. Moving the joints to keep them from being stiff can be helpful even for those with autoimmune arthritis, but it will not prevent autoimmune arthritis from forming. If it is in your body's make-up to have the autoimmune disease, then it will be done. Period. There are some myths floating around out there about weight and autoimmune arthritis. I just want to set the record straight so that all know; being over weight cannot cause you to get autoimmune arthritis!
My numbers: 85-18-36!
Please post your story of your onset of autoimmune arthritis in the comment part of this blog. Stress how you feel about weight and its affect on autoimmune arthritis. Also, post your numbers if you know what they are. And since we are on the subject of our numbers, if you know what I am talking about, please post your numbers as your facebook status, on twitter, and ask others to do the same.
Thank you all so much and enjoy World Arthritis Day!
For this MOWer's blog carnival, the topic is friendship. I have had a lot of time to think about friends and friendship since I'm behind in writing my blog posts for this particular blog carnival. Thank goodness this group isn't strict on due dates! I would be in trouble if that were the case because I have so much that I would like to share with this group, and I am grateful for these special friends that I have made online for adding my posts after the fact~after doing all that work. One particular friend, Cookie, finds the time to add my posts, corrects my grammar, and carefully reads and re-reads each of my posts over and over again to make sure it looks the way that I wrote it on my blog. She has even typed it out one word at a time if it didn't look JUST the way it looked on my own blog site. She is an amazing woman and friend. I'm so glad I met her. I look forward to "hearing" from her online daily, and worry when I don't. She does the same. That is a true friend! Thanks again, Cookie, for being such a great, dear friend to me. ;D
According to Wikipedia, Friendship is defined as...
...a form of an interpersonal relationship generally considered to be closer than association, although there is a range of degrees of intimacy in both friendships and associations. Friendship and association are often thought of as spanning across the same continuum. The study of friendship is included in the fields of sociology, social psychology, anthropology, philosophy, and zoology. Various academic theories of friendship have been proposed, among which are social exchange theory, equity theory, relational dialectics, and attachment styles. Value that is found in friendships is often the result of a friend demonstrating the following on a consistent basis:
The tendency to desire what is best for the other
Sympathy and empathy
Honesty, perhaps in situations where it may be difficult for others to speak the truth, especially in terms of pointing out the perceived faults of one's counterpart
Mutual understanding and compassion; ability to go to each other for emotional support
Enjoyment of each other's company
Trust in one another
Positive reciprocity — a relationship is based on equal give and take between the two parties.
The ability to be oneself, express one's feelings and make mistakes without fear of judgement.
It is very important to have honesty, trust, sympathy, respect and helpfulness in friendship.
All those fantastic fields that I mentioned above are studying and researching the impact of friendships' influence on our well-being and happiness. We cannot deny that having strong social supports helps us, especially women, feel better. People live longer, healthier lives when they have friends, especially strong, bonding friendships. No one knows if friendships actually lead to better health, if there truly is a correlation, a cause-and-effect relationship. There have been plenty of theories though. One theory is that if you have a good friend that leads a healthy lifestyle, he/she will then encourage you to also lead a healthy lifestyle as well. Another theory is that good friends better enhance your coping skills to deal with illness and health problems. Still another theory is that good friends encourage you to seek out help and to access health care and other health services. And the final theory is that there are actually physiological pathways protective of health that good friends affect. Friendship is believed to protect both physical and mental health. Loneliness and lack of friendships have been shown to be linked with more heart disease, viruses, and cancer as well as higher mortality rates.
Friendship is an interpersonal relationship also found in animals~mainly mammals and birds. Cross-species friendships can develop between a human and a domestic animal~a dog or a cat. Sometimes friendships develop between an animal and another animal of a different species. I can say that I have and have had friendships with my dogs. Max was my very close furry friend and buddy who is no longer with me! Cookie (different from before-mentioned Cookie) is still my furry friend and now my son Michael's best friend! I have neighbors with a cat and a dog where the cat and dog are best of friends as well. Also, many times, we have seen a dog and a horse or another farm animal that the dog has befriended. Friendship crosses over too when a dog nurses another animal's babies to health even when it isn't another dog. Amazing stories come out of things like this too!
I recently blogged about my bestest friends~Ang, Susan, Kelbi, and Carlene. Each one of these people has brought so much to my life, has entered my life at different times,--perfect times actually--and each one of them is as strong of a woman (or Babe) as the next one! I have known Ang since we were 6 years old. Ang is the type of friend that I can have a no-holds barred kind of fun with. She is also the kind of friend I can trust with my deepest darkest secrets. She knows how to bring me out of my lowest points and how to make me laugh until I pee my pants! She supports me when I fear no one else will. I can text her at 3 a.m. She has come to visit me~jumped on a plane at a moment's notice~because I need a friend, because she wants to share my excitement, because I need a shoulder to lean on, or just because she wants to take a trip somewhere fun or go to a concert--in a two bedroom apartment on a sofa bed in the sunroom or on an air mattress in my baby's room to help with and play with him during the day and then watch a scary movie or two with me at night!!!Kelbi, Susan and Carlene all share my pain. I mean they all have a form of arthritis and fibromyalgia. I am able to call or email them any time of the day to talk about anything. It is especially wonderful to have friends who share something like this because they understand exactly what it's like to not be able to get out of bed, to cancel appointments, to feel so fatigued you can't even wash a bowl in the sink or stand to take a shower. They just "get me." It is sad that what brought Carlene and Kelbi to me was the Arthritis Foundation. If it weren't for our disabling conditions and wanting to help other young adults and other people learn to help themselves to deal with the pain and fatigue, we may have never met. If I didn't have arthritis, I wouldn't have been seeing a counselor, and I wouldn't have been introduced to Susan. I have four Bestest Friends: Ang, Kelbi, Susan and Carlene. They each have entered my life at different times, in different ways, for different reasons~all staying to support me, love me, care for me, understand me, and always be there for me!!! Thank you so much. What would I ever do, where would I ever be, and how could I ever go on without you all? Please read more about them in my previous, more detailed blog about all four of these fantabulous friends in "My Bestest Friends!"
Also, please read more about my hubby; he is my lover~true~but we started out as friends. When we were married 11 years ago, we shared this quote with everyone, and it really summed everything up for us:
This day I marry my friend; The one I laugh with, Live for, Dream with, And Love!
Eleven years married~seventeen together~we still laugh together, live for one another, share our dreams, and love one another more and more each day. We are true friends with a romantic love for one another. To learn more about my significant other and how much he means to me, please read my poem to him, "Significant Other~Will Never Your Eyes, Soul, Heart Forget!!!!"
I began blogging to help myself. I thought of it more like journaling, the difference was that others had access to it. I didn't even think anyone would read it~ever! I didn't think anyone would be interested in my pathetic, boring life. I also started blogging before I did anything else online. I had an email address, and that was all. My grade school was searching and searching for me for our 20 year Grade School Reunion from 8th grade. Most didn't know that I moved to Georgia from Missouri (with a couple stops along the way in fact). Most didn't even know I was married. Almost no one knew I was in chronic pain, had chronic fatigue, was sick all the time, and had already had one joint replacement at that time, and was well on my way toward more. I basically thought no one would understand, no one would want to be burdened by me, and I would just end up being a bother to everyone. My life seemed to stand still, although we had moved several times. I had gone to a university and gotten my BS in Nursing. I had worked as an RN for a short while, and my hubby had also worked after getting his Ph.D. He was on his 2nd tenure-tracked position. We still had no children, and we had been trying to adopt in every state we lived~no luck!
Somehow I found out that people were searching for me through Classmates.com. I found out that people wanted me to go on Facebook so they could find me easier. They thought I fell off the planet! Ang, that I mentioned before, was looking for me for a few years. Her parents passed away, and she was looking to re-unite with old friends that she shared a special friendship with when she was younger. I got the search on Classmates.com. I contacted her, well when I figured out how to do instant messaging! I can't tell you how excited I was to be chatting with her online! I didn't even know what I was doing. I thought it was like the Jetsons at the time. I couldn't believe it! She told me to get on Facebook as well, so I did. Before I knew it, I had become a new person. I loved it online! I was "friends" with all these peopleI knew from grade school, high school, and college. Then I started adding family to my "friends" list. I then started blogging more. I added my Facebook badge to my blog. Then others started asking to be my "friend" on Facebook. These people were actually reading my blog, commenting, liking what they read, and wanting to be my Facebook "friend." I then was being invited to join other social networks online for people with chronic pain~ChronicBabe, My Invisible Disabilities Network,Patients Like Me, etc. Then as my blog got more followers and more people knew who I was, I was introduced to this new exciting thing~blog carnivals!!! I began writing blog posts for different blog carnivals, and then I started joining people's group pages on Facebook for their blogs as well as other Facebook pages related to chronic pain to which these other Facebook pages led me. I really started racking in the new Facebook friends online. I was up to over 1100 friends! It started getting crazy actually because I felt like I didn't really "know" the people with whom I was friends. I decided to divide my personal Facebook into two separate profiles, one for family and friends that I actually knew and met and one for online friendships. This happened when we adopted our son Mick. It worked out well because I didn't really want to post pics of him online for people to see that I didn't really know anyway. Now that it has been a while, I have added to my family and friends profile online friends with whom I have built a relationship and trust. I like this so much better because I spend so much time on my family and friends Facebook profile but not very much time with my online friends profile. Some people are on both of course because they started on one and wanted to be added to the other. If you started on the family and friends and were added to the other, it was probably your choice. If you did the opposite, then I probably felt like I got to know you enough and trust you to add you to my family and friends profile. I am so happy to have you all on whatever Facebook profile you are. I care about all of you, whether I know you well enough to really love you as a true friend or care about you by association because of a common cause or interest, etc. So thank you all for that!
I find it so amazing how the internet works now. I met people on social networks other than Facebook, on Facebook itself, through my blog, through other blogs, and in groups on Facebook. I have recently looked back at old conversations and comments with people that I have met online. I have had their support and have been supporting those same people from the beginning! Our friendships are long-lived and strong. We have fought the same battle. We have lived lives so similar, so challenging, and with so many struggles. We think about people with whom we see and talk in our everyday lives that mean so much to us, and of course those friendships are special. But, I can't believe how much my friendships have meant and still mean to me that I have made online. The nice thing about my online friends is that they are always there! I turn on my computer, and your smiling faces are all right there staring at me. I can't tell you what that means to me. Well, I guess you all know, because you see it too! It is a wonderful feeling to be able to find someone at any time of day anywhere in the world at your reach. I never thought I could have friends from Ireland, England, Germany, Canada and even within my own country in other states~Texas, New York, etc.~who all seem to live together inside my laptop. Thank you all for always being there.
There are so many people out there who don't "get it." My online friends are very important to me. Many of them are true friendships that mean as much to me as do my friendships with people that I can touch, see and go to lunch with~some even mean more to me depending on who we are talking about. There are a few groups of online friends that are going through such similar things as me healthwise or know someone going through the same thing that I am going through that they can sympathize or empathize with me. I can think of a few online individuals who I know for a fact desire what is best for me because they have told me over and over again how to take care of myself because they want to see me as well as can be. I can also even pinpoint a select few who are so honest with me that they would outright tell me to stop doing something because it's not a good idea and do something different for myself immediately because they care about me as friends. There is a mutual understanding and compassion there, and I will always be there for them just as they are always my emotional support. I am able to be myself. I don't have to act like someone else in their presence. I am never judged, and I do not ever judge them. We trust each other and enjoy each other's company. And like I stated before, all of this is important to have a true friendship~honesty, trust, sympathy, respect, as well as helpfulness.
Now it doesn't mean that I am ditching my friends in "real-life" to be with my online friends all the time. And I never said that I like the friendships in "real-life" more than my online friends either. They are just different types of friendships. The relationships are all together different, but I am still the same person. I don't have to change, and that is super-important. All of you get to know that I like to joke even when I'm not funny. I like to talk a lot, so for my online friends, it comes across as "wordy" most likely. But, ya know, if I took out a lot of those words and adapted to this new form of "texting" and chatting, etc., well, you just wouldn't get the "full effect" of the true "Dana." I'm expressive. And with expressive, well, comes lots and lots of words...
Now, I was going to end here, but I feel it's important to add that with all my talk about how important friendships are and getting to know people online, I wanted to add that I recently was introduced to a fellow blogger, Sweet Sara (Gitzen Girl). She blogged about being homebound and having Ankylosing Spondylitis. She very recently got sick, very sick, so sick that she did not get better. She passed away Saturday, September 24th at 11:14p.m. from complications of A.S. Thank you, Sweet Sara, for becoming an online friend to so many people...
"Lyrics bring tears of joy as well
as tears of loss. The rhythm and the beat infectious; I can
be distracted from my chronic pain. Use the lyrics and music to embrace
the pain and my chronicness. So, my assignment, should I choose to accept it (totally did) is to think about a personal
playlist (while Apple works on the imoodpod): what songs inspire,
elevate mood, give a shot of energy? And, why these songs – what about
those lyrics, that singer/songwriter, band – speaks to me? By sharing – my songs of inspiration, mood improvement (or reflection), anthem(s)
to my chronic illness(es), get-me-moving-beats – with other folks
dealing with chronic illness(es) and chronic pain, I can open up new
worlds of lyrics, musicians, musical styles." This was my entry for the PFAM blog carnival.
I immediately thought to use Michael Jackson for my artist of choice and choose a few of his songs that I feel represent what is going on in my life right now. Michael Jackson suffered a lot, and although he was a public figure, he was a very private person. He suffered from pain. He had trouble sleeping, lost a lot of weight, had what many believe to be arthritis and lupus. He also had a skin condition called vitiligo. He very well may have also been dealing with skin and hair conditions due to the lupus and arthritis as well. We lost a very talented artist, a legend, and someone that we should have probably been spending more time listening to his lyrics than focusing on what he was wearing or what he was covering up under his clothing, his masks and his sunglasses and hats. Who cares about all of that? How the hell did that affect any of us?
We need to Heal Ourselves so we can "Heal The World",
Because "We Are The World"!
We all "Cry"!
We have to start by looking at the "Man In the Mirror" for everything, helping ourselves, others, asking for help, opening up to others, etc.
Many times, all we want to say is "Leave Me Alone!"
"Don't Walk Away"! I'm not done yet. Michael Jackson has always made me feel like dancing. When I was 10 years old, I had a hope chest full of pictures of him because I wanted to marry him, sadly that dream has dissolved...
Michael Jackson has made me feel like dancing, has given me ideas for the best Halloween costumes, has caused people to memorize his dances (ummm, Thriller ring a bell?), and people know his songs from when he was a little tike~ABC as easy as 123...
He has a following that no other musical artist has, was a humanitarian, a father, a dreamer, sensitive, a poet, a loner, sad, likely depressed, in pain, suffering from chronic pain and chronic illness, suffering in silence, alone, and like many of us, afraid to talk about it and wanting to be left alone and instead considered odd and different and weird. Had he stood up for himself, admitting he was sick, becoming an advocate and an activist for those with chronic pain and chronic illness, would it have changed his life at all? I would have to say yes. I don't know for sure, but if you are suffering in silence, don't. Today, you are "gonna make a change for once in [your] life, [it's] gonna feel real good, gonna make a difference, gonna make it right..." Tell others about your health problems, educate them, people jump to conclusions many times and make assumptions because of ignorance and lack of knowledge. It is up to you to let them know about your chronic illness and pain.
"You Are Not Alone." I will always be here to blog for all of you!!! I love you all. Hugsssss!!!
OK, Now it's time for the Sleep topic for the MOWer's blog carnival. I hope you learn a lot from this topic. I think this is an important topic for others to read about those with chronic pain/illness. It is, sadly, something that affects all of us.
What I find so interesting is that when our son was born 8 months ago, the question that was asked the most was, "Are you getting any sleep?" I always had to laugh. No, I wasn't getting any sleep, but it wasn't because of my sweet baby boy. He was amazing! He slept through the night since the day he left the hospital. I couldn't believe it!
The reason it's so interesting to me is that this seems to be the only time anyone seems to care if you are sleeping through the night, if you have a new baby. No one asks you if you have a chronic illness, especially chronic pain, if you have been able to sleep (unless the other person is also experiencing chronic pain/illness and also not sleeping). Why don't people think to ask that question? Why is it that we would only not sleep if we have a baby? It was actually torture for me to have a baby that slept through the night from the beginning. I kept thinking, "How perfect; I'll have someone to stay up with me through the night, and we can keep each other company. I will take care of my baby, and the baby will help keep my mind off my pain." Well, that is what I get for trying to think ahead and plan...
I have tried it all...new mattress, flip/turn the mattress, only use the bedroom for 2 things (sex and sleep), meditate before bed, take a soothing bath before heading to sleep, Sleepytime tea, wind down and read just before bed, journaling before closing my eyes, using a TENS unit while sleeping, pain meds, sleeping meds, heat/cold on painful areas, different positions, prayer, and many more...
Lately it has been much, much worse. I stay on the couch, and stay online until the wee hours of the morning while my hubby and dog go to bed. My son also sleeps so soundly. He sometimes loses his pacifier, his fafie. He might whine a little. I smile, and as quickly as I can enter his room to soothe him with his favorite fafie I place it back into his soft little mouth. Thank goodness I was awake.
My hubby gets so aggravated. He doesn't really like to be awakened from a deep sleep, and I always get into bed around two or three a.m. He always thinks that I have just been up watching t.v. and goofing around. It is so hard for him to understand that I just can't sleep. If I try to go to sleep when he does, I stare at nothingness. I watch the clock change from 11 to 12 to 1 to 2 to 3 to 4 to 5. By then, I do finally doze off. Then, he is waking up and getting ready for work. Then, my son wakes up and is ready for breakfast. Everyone is well-rested and ready to face the day. I on the other hand am even more tired than the day before...
Each day I am even more and more tired...
Because I am more tired, I am more and more fatigued..
I need to be able to place my head on a soft pillow and sleep...
I need to be able to find a position to sleep in on a good firm mattress and drift away to dreamland...
I need to actually have a dream again...
I don't remember the last time I had a dream...
I do remember the last time I pulled an all-nighter...last night...
I forgot what it's like to know the difference between night and day...to wake up in the morning refreshed and go to bed at the end of the day...
I want to be able to say to all the people with chronic pain/illness, "How well did you sleep last night?" instead of "How did you sleep last night?"...because I want to ask a question expecting a positive outcome rather than to ask it expecting a negative outcome...
For those of you who don't have a problem with sleep, I have to tell you, it is the worst thing to experience. To just lay in bed and stare at a dark ceiling is miserable. The fact that the pain is keeping you up to begin with is bad, but that you are so fatigued and would give anything to just fall asleep is a different kind of pain. I lay there and want to sleep so badly that it actually hurts!!!! I pray to God to help me to drift off to sleep. I try teas, meditation, hot baths, music, medication, EVERYTHING!!!! Nothing works...And to know that if I could just get some sleep, I would feel a little better.
Sometimes if my hubby wakes in the night, and asks if I am still up, I answer yes, and keep on talking. I am just so happy that someone is up with me. It isn't long-lasting, however. He soon falls asleep as I'm still in the middle of a story. The next day, he doesn't even remember ever talking to me. When I tell him about it, he gets mad that I interrupted his sleep. He doesn't even remember!!! He isn't tired, how did that interrupt HIS sleep? Oh, well.
The biggest thing that I want to get across is what it feels like, why I can't sleep, why many of us can't sleep. This is how it is for me:
On my belly, the pain is so bad.
Instead, I flip to my back.
On my back, my knees begin to ache,
Oh my God, I am still awake!
My feet, my feet, I can't feel my feet!
They start out numb but then I start to feel HEAT!
My feet hurt so bad,
I feel like I could actually go mad!!!
MUSCLE SPASMS IN MY ASS!!!
Please, God, when will it pass?
I want to sleep!!!
The pain is beginning to make me weep.
Tears...
Fears...
Now crying hard.
I change positions, but I have to guard
my hip, my shoulder and elbow too.
Oh, God, what do I do?
The pain is now so intense,
and sleep just doesn't make any sense.
How do I sleep in a bed
that feels like rocks underneath my head?
Will I ever dream again
when my pain is so deep within?
It feels like my marrow is fighting back.
I feel like I could break if I hit the sack.
Burning, pounding, aching, stabbing,
Bruising, biting, pinching; all of it I'm having!!!
"Words tell part of our story as we blog, but pictures often complete that story.
So instead of words, I would like to include photographs of life with your chronic condition(s) to create a Patients for a Moment Wordless Wednesday on August 24."
Each day we do so many tasks. How many things do you do in one day that involve the use of your hands? Imagine being unable to move or grab things because of intense pain, stiffness and inflammation...
Before and after my hip collapsed and was replaced, I had to use a cane to walk with. Yes young people do use canes...
Shoulder replacement surgery is not for the faint of heart...
Atlanta's Arthritis Walk. You should be an activist for your cause...
With Psoriatic Arthritis, when my psoriasis flares, it isn't pleasant. It is red, flaky, itchy, painful, scaly, and often on my scalp, neck, ears, eyebrows, elbows, knees, hands, and face (which is not a common place to get psoriasis). It is hard to hide the psoriasis rash on the face, even with make-up because the skin is so dry and even peels. It can be embarrassing because people stare and think it's contagious...
Every 4 weeks, I get an I.V. for my Psoriatic Arthritis/Spondylitis...
Healing takes a while after surgery when you have an auto-immune disease...
My tendons tend to become inflamed and sore. It makes it especially hard to move...
The fatigue from all of these & fibro is overwhelming...
Thank God for my wonderful support...
S
C
A
R
S
from surgery. Even a black eye after surgical removal of a tear duct plug and draining of duct due to Sjogren's complications...
