Dancing with My Disabilities!

Title: Dancing with My Disabilities! I had my shoulder and both hips replaced, and I am changing things up a bit on this blog! I began belly dancing in 2010! Yes, you read that correctly!! I am going to be blogging about my experience as a woman with several joint diseases and conditions who had her shoulder and both hips replaced who now belly dances, dances hip hop, performs, teaches dance to children of all ages and abilities, teaches belly dance fitness classes to adult women, teaches chair belly dance movement classes to people with mobility issues and disabilities, and takes a Pure Barre class as well! I still have pain, but I want to blog about how I have fun too! Please read Chronically Mommy (chronicallymommy.blogspot.com) for info on health/pain and being a mom to a 13-year-old son. I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, axial spondylitis, Sjogren's, fibromyalgia, hEDS, POTS, MCAS, vascular/ocular/hemiplegic migraines, pseudotumor cerebri, trigeminal neuralgia, occipital neuralgia, endometriosis, and chronic shingles. I found out that I have autoimmune arthritis in my cervical spine and a bulging disk in my lumbar spine. Fourteen years ago, my spine orthopedic surgeon told me I had a small amount of inflammatory arthritis in my SI joint. The question was if the spinal involvement was due to Psoriatic Spondylitis, which is a more severe form of Psoriatic Arthritis or is it a new diagnosis of Ankylosing Spondylitis? Now, they have an updated term, Axial Spondylitis, which fits my symptoms and diagnostic proof. Whatever the diagnosis, the treatment will remain the same. I had my left hip replaced in 2003; my right shoulder replaced in March of 2010. I gave my right arm to be ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012, and I began belly dancing two years prior to my right hip replacement surgery. Yes that's correct! I began belly dancing in 2010, just after my shoulder replacement, before my son was born. I performed for the first time in 2012, five days prior to my right hip replacement surgery. Pain is still another part of my life. It is just a question of when, where, and how much, but I would like to use this blog to write about my experience as a woman with several joint diseases and conditions who had both hips and a shoulder replaced and now spends her free time dancing, teaching, and performing! I began dancing with a troupe in February of 2014, Seshambeh Dance Company. I now take a Pure Barre class on Monday mornings, teach ballet, tap, and creative movement on Monday evenings to children of all ages and abilities, take a hip hop class with all adult women on Tuesdays and Wednesdays, teach a belly dance fitness class on Thursdays to all adult women, and teach a chair belly dance movement class to people with mobility issues and disabilities as often as I possibly can. Join me in my journey! At times, I take 16 to 20 pills a day. I give myself an injection each week on Fridays for my autoimmune/autoinflammatory arthritis diseases. Just when one thing is doing better, something else goes downhill! My attitude, however, is always going uphill! I am 49 years old, have been married for 24 years, and my husband and I adopted Mick in Dec. of 2010! I have a lot on my plate right now, but I take it one moment at a time. I believe that God will never give me more than I can handle. However, I do need to learn to ask for help sometimes instead of always doing it by myself!

Blog Title: Dancing with My Disablities!

Formerly Now Read My HIPS, and before that, I Already Gave My Right Arm to Be Ambidextrous.
Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

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

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

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

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

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

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

Dancing with My Disabilities

Dancing with My Disabilities
Asmara "Beautiful Butterfly"

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Saturday, August 13, 2011

Significant Other~Will Never Your Eyes, Soul, Heart Forget!!!!!

For this MOWer's blog carnival, we are to blog about our significant other.
When I first looked into your eyes,
I knew you would hold my hand.
On our first date, you looked in my eyes

and said, by my side, you would stand.
How did you know already that you loved me?

How did I know that you would never leave my side?

The eyes are the windows to the soul, you see, 

and we gave each other our souls as we met with our eyes.
When you told me you loved me,

I already knew

that I was in it for the long-run, sweetie!

Because I Loved You too!
Unfortunately, you were in it too,

and your long-run was quite bumpy.

My life ended up quite chronic and way too true!

When you said "will you?" you also got my chronic pain~crummy!!!
I said yes! without a thought.

I know you had at least one or two...

There hasn't been one struggle that together we haven't fought

because we are soul mates, and that is what we do.
For richer, for poorer, in sickness and in health,

If only we knew how hard it would be.

I never wanted wealth,

but one day with no pain would be SWEET!
You have made each day a little better,

and each night with less pain,

You have made me able to write this letter,

and given me a kiss that takes all the bad away!
Do I take you to be my husband?

Yes, yes, yes!

I would do it again and again.

You have kept me from becoming a complete mess.
You have taken on so much

from helping with our home,

to cooking without a fuss,

and most importantly--being my caretaker/caregiver all on your own.
You bathed me,

shaved my legs and washed my hair.

You help with our baby,

and you always care.
I have had surgeries,

even replaced my joints.

You have taken me for I.V.'s and helped with injuries,

and you have always been there, which gives you brownie points!!!
I will say "I do" again and again,

I would hope you would too.

In this relationship, I win,

but I hope that you would also again and again say "I do".
I hope that just because my body is falling apart,

you will always know who you met,

when you first looked into my eyes, into my soul and saw my heart.

That person is still there and will never your eyes, soul, heart forget!!!!!




Tuesday, August 2, 2011

I Click My Heals Together Three Times...There's No Place Like Home...There's No Place Like Home...There's No Place Like Home...And I Find My Happy Place!


"We've all heard the expression 'Find your Happy Place.' That may be a tough thing to do as a chronic chick. So this edition of PFAM asks 'Where's your Happy Place?'"

I could easily say my favorite place to go is the ocean. I love the beach and the sound of the water as the waves hit the shore. It is peaceful and relaxing. I could also say that I enjoy walking through a particular park in St. Louis. I love the neighborhood that surrounds it, and it reminds me of when I was younger, meeting my husband, and starting my life as a young adult. I could also say that going to the aquarium in Georgia & Kentucky calms my soul. I have mentioned before that I so loved to dance, so anywhere I could dance would certainly bring out that passion.  Of course, I have yet to mention the one place where I truly find HAPPINESS.

I don't have to go very far, you see...

The best part about this place is that anyone can go there, you don't need an invitation, you don't need a plane or a car, and you never have to leave your living room!!! That's right. My Happy Place is a state of mind! I can get there when I am having a relatively pain free day and have friends to share laughter with, or if I'm having a painful day and use humor and laughter to simply release endorphins and make me feel better. They say laughter is the best medicine. Well in this case, laughter, humor, a comedy, a joke, the newspaper's funny pages all can take me to My Happy Place.

I have learned that every single day it is important for me to take the time to think about the important people in my life and anything else that God has blessed me with in my life. No matter how badly I think I have it, there is always something I am blessed with. It is never helpful for me or anyone to focus on the negative, but sometimes we do get stuck in funks, especially when we suffer from chronic illness and pain. If everyday we take that time and focus on the positive, like me you just might find that it helps you get to your Happy Place much easier. It makes since. Doesn't it? When we concentrate on the positive, we are happier than those who dwell on the negative.

It might even help if you take it a step further. You could actually write a thank you letter to someone who has helped you out significantly. You don't even have to actually give that person the letter. Just putting those words down on paper or typing them out on your computer will amaze you.  Expressing gratitude shoots the happiness quotient up a notch! Afterward, I'll bet you even stay in your Happy Place longer than if you didn't write the letter.

I have found that finding My Happy Place is easier when I am doing something that I love. I enjoy many different things so I am extremely fortunate to be able to get to My Happy Place often. Writing and blogging, painting, dancing, swimming, and meditating are just a few of the activities that I love to spend time doing. So when I'm able to have fun doing something I'm good at, I'm at My Happy Place in no time. What's better is that one of my strengths is social connection. Given the chance to interact meaningfully with other people and practice self-expression, allows me to choose hobbies that involve others. I get to meet lots of different people, and many times I can do it from home, even online. So how great is it to be able to go to My Happy Place when I'm online, say chatting it up with my facebook friends or other social network buddies who also have chronic illnesses, who are also looking for a social connection, to interact with someone and find their Happy Place!

Finding the time to volunteer, donate my time, do simple acts of kindness, and just being generous basically adds up to doing good to others. I feel that is extremely important to getting to My Happy Place quicker. Ya know why? Well, it raises the happiness factor. It just does. You give to others; you are happier. Therefore, you reach your Happy Place much faster than if you didn't do good to others. Simple!


Mostly though, I am able to get to My Happy Place with my little family. I just have to sit in our sun room with baby toys spewed all over the floor, my hubby making funny noises at our son, my son sounding like a pterodactyl screaming, my dog licking the food off my son's face, and me~well, I am just in awe!!! Yes, this is what I always wanted! I always wanted this! Believe it or not. I prayed for this.  Who wouldn't want a child that sounds like a pterodactyl, a dog that keeps their kid clean, and a hubby who sounds just like the baby!?  It is exactly what I pictured My Happy Place to be. When I'm here at my home, and in that "Happy Place" state of mind, it's a relaxed, calm, peaceful kind of happiness. But whenever I am away from my home and want to go to My Happy Place, I go here to the sun room with the toys and the kid and the dog and the hubby!

These are my steps to getting to My Happy Place since you can't get there by car, plane, train or boat. You have to train your brain. This is how I do it. I hope it helps you. I hope that you can enjoy your Happy Place as much as I enjoy mine. I hope to meet up with you sometime. Perhaps our Happy Places will cross paths.
  1.   First, I decide, "Do I want to be happy right now?"
  2.   If the answer is yes, then next, I tell myself that I have permission to be happy.
  3.   Then I understand that I am in control of my own happiness.
  4.   It is OK to feel my own feelings and to laugh.
  5.   Focus on the positive.
  6.   Show gratitude.
  7.   Focus on my strengths.
  8.   Interact meaningfully with others.
  9.   Do good and be kind.
  10.   Live in the now~find My Happy Place!

Monday, August 1, 2011

Hope


I have faith that tomorrow they will find a cure
   for all those with joints~pain and stiff.
  And have confidence that all of us who dream, plan and wish
only hold in our hearts an optimism and a courage that is pure.

The likelihood that many of us could end up as cripples
   is a possibility that is high.
   Chances are that you and I
can expect a cane, then walker, then wheelchair~the effects that ripple.

I trust that you desire for more.
   For I yearn to dance!
   I again want to look forward to a second chance.
I want to at least be as normal as I was before!
I long to take endless walks,
   to not have to plan for rest breaks,
   to just anticipate~
For anything fun! And no longer expect that others will gawk.

If I can set one goal today,
   my wish is to set my expectations high.
   I promise to myself and others to aspire
to reach these in good faith.
*******************************************************************
I have hope that tomorrow they will find a cure
   for all those with joints~pain and stiff.
  And have hope that all of us who hope, hope and hope
only hold in our hearts a hope and a hope that is pure.

The likelihood that many of us could end up as cripples
   is a possibility that is high.
   Chances are that you and I
can expect a cane, then walker, then wheelchair~the effects that ripple.

I hope that you hope for more.
   For I hope to dance!
   I again hope to hope for a second hope.
I hope to at least be as normal as I was before!

I hope to take endless walks,
   to not have to hope for rest breaks,
   to just hope~
For anything fun! And no longer expect that others will gawk.

If I can set one hope today,
   my hope is to set my hopes high.
   I hope to myself and others to hope
to reach these in good hope.


In Hopefulness
Dana Morningstar
 
  


This is for the next MOWer's blog carnival. I hope you all find what you need from this blog post!

Saturday, July 9, 2011

When Regret Gets The Best of Me...Regret Enters The Dark Hole With Me!

For the third post for the MOWer's Blog Carnival, the subject is Regret. Wow! Now there is a topic that a person with any chronic illness that involves disabling pain would understand!

I think we all probably could have a lot of Regret if we allowed ourselves. We can be rough on ourselves too as chronics.  We have to give up a lot; we miss a lot out of life; we lose a lot of friends (or I guess they weren't true friends to begin with, but it still hurts); our family gets smaller (they stop calling, stop listening--if we were lucky to have them ever start listening--they simply fade into the distance); our dreams disappear or remain just that--dreams; our goals become inconceivable; life becomes less fun; and the world becomes smaller.

I believe that when we start to think and feel this way, that is when we begin to regret things in life that we have done or that we never achieved.  We start feeling this darkness, this sadness, emptiness, and we feel like we can't get out of this dark hole of dwelling on all of this "stuff." That is when the regret enters the dark hole with us...

...Remember when you were a young girl?...You were such a beautiful, delicate ballet dancer. You were SO young then. You danced at the performing arts studio three hours a night and went to school. You had so much energy then!  Remember when you were in contests and shows and tours with professional ballet companies? The GRACE was flowing through your veins, and I do believe you were high on life! You were so joyous then, and the music was a part of you. Flowing, floating, leaping, bending; strong, determined, directed, creative; over-achiever, highly-commended!
You had such talent! You were so far ahead of the other young girls your age. You could have made it so far. What if you continued further as a dancer? Where would you be today, Dana? If you didn't stop dancing so young, would you have been able to still be a ballerina? Well, probably not, but if you stuck with it, you could have gotten in at least another five years, maybe ten. But you were a quitter!!! Quitter, quitter, quitter! You will never know now how far you would have made it with your exams with the Royal Ballet in London. Sure, your first time, you got Honors--not one point taken off for anything--not for the written part, the oral part or the dancing part. And of course you got Highly-Commended for your second exams because you got one point taken off, and I bet you even remember what it was for. Don't you? What if you kept dancing. Would you have continued to do well on your exams? Would you have continued to move up? You will never know, will you?
I'm here now to help you remember all that joy that ballet gave you. I'm here to remind you that you quit before you were too sick to keep dancing. Then you actually were too sick and had to stop your love for ballet. Now I'm here to really rub your nose in it. You can't go back and do it over. You don't get to press rewind and play it all over again. It's too late!! Quitter, quitter, quitter! (by: Regret)

After Regret makes you feel horrible about yourself for a decision that you made years and years ago, then you start to focus only on that.  This is the one thing that always allows Regret to grab hold of me. I loved ballet with a passion that I cannot even put into words. I dream about dancing when I sleep at night (well when I do sleep, which is rare these days).  I dwell on it so much sometimes when Regret gets the best of me, that I can't stop sobbing. The tears flow. I gasp for air. I can never be that ballerina again...

I am not even graceful anymore. My own husband never knew me as a ballerina. I think that's sad because that really is the true me. I will always be that ballerina deep inside. I just can never again glide across the stage on my toes, leap high into the arms of a gentleman dancer who catches me safely, or twirl so fast that my head whips quickly so I can spot something on the side that I'm turning toward so I don't get dizzy. My feet ache so badly from plantar fasciitis and Achilles tendinitis, and my toes all have arthritis in them. I have a hip and a shoulder replacement, and my neck will never "whip" again because of the arthritis and bulging disk in my neck and lower back. 

Just so everyone knows, I stopped dancing for a boy...I had a boyfriend who played hockey. I wanted to watch his practice and his games, so I QUIT ballet! Yes, I really was a quitter! I was young, so I didn't think I was never going to have the chance to go back to ballet. I thought I had all the time in the world. I Regret thinking that way...

From here on out, I will never not do something or put something off or quit something because I think I could take care of it at a later date. Anything can happen. My Avascular Necrosis happened, and it happened very quickly in six joints, and psoriatic arthritis happened, and then psoriatic spondylitis happened, and sjogren's happened, and fibromyalgia happened, and hypertension happened, and endometriosis happened, and hemiplegic migraines happened, and pseudo tumor cerebri happened, and a hip replacement happened, and a shoulder replacement happened, and all the surgeries, meds, and side effects that go with it all happened!!!!!

I have realized that if we look back at everything that we missed out on, and dwelled on it and Regret all that we could have done because of it, we can't move on in life. It is like being stuck in that black hole and having Regret treat us like shit the whole time--tearing us down, reminding us of stuff we did or didn't do, making us remember stuff we don't need to remember or we want to forget. Ya know we might just want it to be that--a memory. 

For me, I have made ballet a wonderful memory. I have learned to fill it with other things. The music and I were one with ballet. I had always "felt" dancing because of the music so now I take dance classes that are less stressful on my joints. I take classes like NIA and belly dancing. I love them, by the way. No, they aren't ballet. To some, they may be the most wonderful dance classes ever. To me, nothing will ever replace BALLET, but I am no longer in that dark hole with Regret!

I would love to one day teach little children ballet. I know the fundamentals, and I love children! I think that just might fill that void almost completely.

I would like to end this by saying that I may not be able to actually dance as a ballerina anymore, but in my heart, mind and soul, I will always be a ballerina. No one can ever take that away from me. I will continue to dance in my daydreams and in my dreams while I sleep.  And I will leave you with this...

You don't wake up one morning and say, 'I will become a dancer.' 
You wake up one morning and realize you've been a dancer all your life, and you say to yourself, 'I am a dancer. I am dance!' (By: Anonymous)


 

Saturday, July 2, 2011

My New Found Independence!

Since our next carnival happens around the USA 4th of July holiday, we were asked to submit a post on the theme of independence.

Let's face it: chronic illness can definitely be a challenge to a person's autonomy and self-reliance; how has chronic illness impacted my self-sufficiency and ability to do things for myself?...


Independence is such a strong and powerful word for anyone with disabilities.  When I say the word, I get a lump in my throat and fight the tears in my eyes. For those of you who know me well, you know that I have been through some pretty rough times, and I have had to depend upon others, mainly my husband, to take me to doctor appointments, reach for things on shelves, and do many of the household chores. I had come to think that I would never reach a point where I could actually feel the freedom of independence...

Many people that didn't know me through the really hard times, and yes I still have hard times, but I'm talking the times where I needed help to get out of bed, to get in and out of the shower, to shave my own legs, and so on, find it hard to believe I was ever that dependent on another human being.  Well, let me be the one to break it to ya...I was. I was in a wheelchair, then a walker, then a cane, and slowly made my way out of using the cane. Then when my shoulder collapsed, I was unable to use my right arm for anything. Then it was in a sling until it was replaced. Then it was in a sling after it was replaced, then the range of motion was limited for several months. Now I can reach up and grab things off the top shelf--well not quite the top shelf because I'm not tall enough!


I was originally dependent on others for my lower half of my body, then it was the upper half of my body. Now with all the problems with my spine, I'm having some problems with depending on people for only certain things like making the bed and bending over for some things, as well as lifting heavy things. Also, my fingers are still in pretty bad shape so I am sometimes dependent on people if I need to do anything that requires intricate work with my fingers. Also, my other hip and both knees will collapse at some point and so I have to be prepared for the fact that I may have to depend on my hubby once again for my lower body again, and my other shoulder will collapse at some point as well, so I will be dependent on my hubby for the upper part of my body as well. I don't like to dwell on it, but I keep it in my mind so we are prepared for when it does happen.


At this point, other than some minor issues of dependence, which I would consider to be more than I need some help now and then. Right now I depend on no one. I feel as though I can finally say I am FREE! I feel a freedom that I never thought I could ever feel. Thank God! I get myself out of bed, I take showers alone, I dress myself, I take care of my baby while my hubby works,--feeding, diaper changes, baths, playing on the floor, etc.--shopping, cooking, cleaning, and laundry!  I really, truly feel so free because of this wonderful independence. What a gift!


This fantastic gift of independence came at no better time also! I had my shoulder replaced in March and adopted our first son in December. I must say, all the stars must be aligned just right for me!  Independence is a gift unlike any other gift. It keeps giving every single day when I figure out more and more I can do with this new found freedom! 


I know that the freedom that I am given with this independence will not last forever. There will always be this impending doom leering over me. I know what my future holds with surgeries, etc. I will have to live each day as though it is my last day of freedom...my very last day to enjoy my independence.

Friday, July 1, 2011

"Guilt"

It is that time again! It is time for the second MOWer's Blog Carnival. The title is "Guilt."  Now, I just wrote about guilt not too long ago, but it is something that seems to enter the lives of someone with chronic illness/chronic pain quite often. Actually, being human, we are the only animals that are faced with the feeling of guilt.  When guilt surfaces, it eats at our soul and resurfaces over and over again. Many times the guilt can make the illness even harder to bear.

I am currently faced with the guilt of not being a good enough wife. We recently had visitors for 3 weeks in a row--friends, then a friend, then my parents, then my mother-in-law, and then the rest of the family. My friend and her hubby and 2 kids stayed with us a couple days, and then went home, then my friend came back by herself so we could go to a concert. Then she stayed for my son's baptism since she is the Godmother. Then my mother-in-law also stayed with us, and the rest of the family stayed in hotels. So family from out of town and friends that live in town came for the baptism on Sunday. The baptism and celebration to follow turned out to be wonderful, but the planning and getting all the food, drink, cake, and decor together was a lot of work.  Also, getting everyone together, and knowing that everyone was traveling from out of town to get here, was very stressful.  Yes, it all got done, and it was a beautiful ceremony and a lovely celebration. But when it was all done, and everyone left, I literally collapsed!

I slept all day yesterday whenever Michael was taking his naps. When he wasn't napping, I watched him play on the floor with his toys or in his pack 'n play or his jumper. Today, I slept again all day!!! My hubby acted like he didn't even understand why I was so tired/fatigued/in pain. He wondered why things weren't done, and he wanted to know how I was able to take care of Michael if I couldn't do anything but lie around all day.

Here is where the guilt comes in...

I know I need to do laundry. I have sheets and blankets because we made up places for guests to sleep. I have regular laundry to do that I didn't do while guests were here. I have regular cleaning to do and dishes. Now I need to continue with the normal everyday stuff~make bottles, make dinner, change diapers, feed Michael, feed my hubby, take the dog out, feed the dog, walk the dog, etc.  I can hardly do the normal daily activities, let alone anything extra from having guests for 3 weeks. My housework is so far behind, and I have no energy!!!

I feel so guilty that I can't be a normal wife and parent!!!


The use of guilt here is not referring to the fact of being guilty of something, but to seeing or projecting my mistakes, while not knowing what to do about them or refusing to correct them. In this definition, guilt is a negative, paralyzing emotion, based on non-acceptance of myself or the situation, and it leads to depression and frustration rather than change or improvement. Guilt is usually a negative focus on myself: I am a bad person. I can't bear myself. I am not worthy.

What can I do about it?
1 - Reflect on responsibility. Often it is/was not my responsibility or fault! Blaming myself for everything negative that happens is a form of ignorance and self-centeredness. Of course, if I am careless and intended to cause problems, then I should take responsibility for my action and see to it that I will not repeat this regrettable action. Instead, maybe I can do something to make up for it.

2 - Reflect on motivation. An act done with positive intention and without self-interest is not negative, although other people may be harmed by it. The suffering experience of others is strictly speaking the result of their own actions. However, we may have made some mistakes like wrong communication or insufficient attention, etc. If this is the case, it should just be a reason to change our habits by improving our communication or mindfulness.

3 - Changing or accepting. If you can change yourself or the situation, change it! If you can't change yourself or the situation for a good reason, accept it! Not acting where we can and could act can lead to frustration and guilt in the long run; just like acting where we actually cannot do anything.

4 - Analyze the use of feeling guilty.  It is based in the present; it is intelligently concerned with the future effects of your recent actions; and it leads to remedying the damage already done and to caution about repeating such an act.

5 - Forgiving. Making mistakes is an inherent human quality: if you don't make mistakes you are definitely not a normal human being anymore. If we are unable to forgive ourselves, we will never be able to properly forgive others.

6 - Reality check with others. If you can overcome your feelings of guilt and shame somewhat, try to discuss these matters with others and see if your reasons for feeling guilty are really valid.

7 - Emptiness. An ultimate cure for all delusions, realizing emptiness will also rid our mind of guilt.

In summary, try to transform the lack of self-confidence, ignorance and mental paralysis with repentence, purification, forgiving yourself, love and compassion for yourself, openness, reality check with others, and wisdom into positive action, fearlessness, and self-confidence. Believe it or not, this is based on Buddhism! They don't believe there is such a feeling or emotion as guilt. So this is how they explain the human experience of guilt and repentence.  For Buddhists, they believe that guilt has such a prominent place because of the Judeo/Christian background of our culture. The concept of being born onto the earth with "original sin" - for which you personally are not even responsible - easily puts a feeling of guilt in your minds (I am bad, even without doing anything wrong). Furthermore, the presentations in several Christian traditions can give you the impression that you should feel guilty and ashamed. I believe that this type of guilt is a socially learned emotion. Tibetans do not even have a word for it! If that is correct, it is not even a basic human emotion, but a culturally -  imposed type of mental frustration; which means that you can relatively easily overcome it by un-learning this artificial emotion.

Thursday, June 30, 2011

Are You an Advocate for Your Own Health?

 
For our new Masquerade of Words (Spondylitis Blog Carnival)'s (MOWer's) our first blog topic has been chosen...the first is "The Definition of a Health Activist."  This is an extrememly interesting topic for me because I am not only a patient with multiple illnesses, many medications, who has had numerous surgeries, but I am also an RN. I have been on both sides of the hospital bed, if you will. I have been the one providing the care and also the one receiving the care. I have been advocating for myself and advocating for all my patients. It is extremely important that you advocate for yourself because you cannot always count on the fact that others will advocate for you. If you have a close friend or family member who will also be a patient advocate for you, then that is even better. And of course, if you are lucky enough to have your physicians and healthcare providers also as your advocates, then you are one of the exceptions!!!!


The most important thing to remember when faced with a health crisis is to be an active part of your healthcare team.  All decisions must be made WITH you not FOR you! You must educate yourself about your illness and all your treatment options. By being an active member of your healthcare team, you are sure to see results and improve.  Begin by researching your illness so that you begin to understand what is wrong with you. One excellent site to begin is www.nih.gov (National Institute of Health). That site will also link to other equally helpful sites.  Remember that there is no one treatment that is right or that works for everyone. Every person is different and unique with equally different and unique needs, beliefs, cultures and spiritual values. 

There are several important factors to be considered when being a healthcare or patient advocate for yourself.  Curiosity may have killed the cat, but it can save your life!  Just as you may shop around to buy a house or a car, use that same spirit of inquiry to find your own medical care.  Ask questions and investigate!  Always, always, always seek out a second or even a third opinion.  A good doctor or healthcare provider will welcome your research.  Do your research carefully and choose your doctors ad healthcare providers wisely. There are many people who love and care about you.  You are very important to many, many people. Keep that in mind, when you think you do not want to do all the work involved.

Also, keep in mind that doctors and healthcare providers are human, and humans make mistakes. Do a background search on the hospital as well as the physicians you choose. You can contact your state's Board of Medicine/Medical Examiners for information on the physician at www.fsmb.org/directory_smb.html.  You can compare the quality ratings of the hospitals at www.ConsumerHealthRatings.com as well at www.HealthGrades.com, which are both independent sites.  I recommend, if possible, to choose a hospital that specializes in the care of whatever your particular condition is.



A federal regulatory body that governs all healthcare institutions which accepts federal funds--The Joint Commission on Accreditation of Healthcare Organization (JCAHO)--along with the Centers for Medicare and Medicaid Services started a national campaign to help

patients advocate for themselves and prevent medical errors: The Speak Up Initiative.


The Speak Up program encourages people to: 1. Speak up if your have questions or concerns. If you still don’t understand, ask again.  It’s your body, and you have a right to know.  2. Pay attention to the care you get.  Always make sure you’re getting the right treatments and medicines by the correct healthcare professionals. Don’t assume anything.  3. Educate yourself about your illness.  Learn about the medical tests you get.  Learn your treatment options and ask about your treatment plan.  4. Ask a trusted family member or friend to be your Advocate (advisor or supporter).  5. Know what medicines you take and why you take them.  Medication errors are the most common healthcare mistakes. (A wonderful resource to learn about your meds is www.rxlist.com. Learn this site and tell others). 6. Use a hospital, clinic, surgery center or other healthcare institution that has met federal guidelines. Ask about their Joint Commission rating on their quality standards.  7. Participate in all decisions about your treatment. You are the center of your healthcare team!


Remember, it is your right to refuse treatment until you understand what is happening.

Watch for the simple things like hand washing.  All healthcare workers must wash their hands before working with you. Stethoscopes should be washed as well. Ask your nurse to identify all medications before you take them. Have your doctor clearly mark the site of your upcoming surgery.  This is really important as mistakes are made every day. When you have a healthcare issue, your illness is too complex or the system is too confusing make sure you have someone who can help you through all the confusion. 

Remember to protect your rights and safety, educate yourself and advocate for yourself with all your medical providers. I wish you the best of health and will assist you in any way I can in your healthcare journey.


Be safe….ask questions!
 

Friday, June 24, 2011

My Bestest Friends!






When I found out that the next blog carnival with Chronic Babe was supposed to be all about my Best Friend, my first emotion was pure happiness, followed by excitement, and then anxiety. OK, you may be wondering why anxiety. Well...I can't just pick one!!! I have narrowed it down to Ang, Kelbi, Susan and Carlene. Each one of these people have brought so much to my life, have 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 will begin with Ang. I have known Ang since we were 6 years old. We have a bond that starts with both of us being Italian and Scorpios with birthdays in November. We both have always loved dancing and enjoyed the same music. We even just celebrated this likeness this week when we attended the New Kids On The Block concert. Yes, we are 36 years old! Don't judge!!! We had the time of our lives! We went out to dinner, split a bottle of wine--which for me is a rarity in and of itself since I don't drink alcohol because of my meds. We reminisced about being young and attending the NKOTB concerts when we were young. 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 my deepest darkest secrets with. She knows me better than my own husband of 11 years. 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. I can get on a plane and fly to her home and stay with her for a day, a week or a month because I need a friend, because I want to share my excitement, because I need a shoulder to lean on, or just because I want to take a trip somewhere fun--in a house with 2 kids to play with during the day and someone to watch scary movies with at night!


Ang is a special person because she truly listens when I talk to her. She doesn't pretend. She doesn't act like she understands if she doesn't really. She truly understands. She may not go through the same type of health issues that I am and have, but she has had her fair share. She does have some pain issues that I'm aware of. I know she has migraines that she suffers from often. She never complains about them. She may say she has one, but never whines or burdens anyone with her pain. She wears hearing aids because she lost her hearing due to Scarlet Fever when she was around a year old. I have never considered her to be different from anyone because she wears the hearing aids. She has never asked for or wanted to be treated any different either.


Ang also lost both of her parents by the time she was 30.This is a loss I cannot even imagine, a pain I have never had to experience. She has had pain in her life too, just not the same pain that I have endured. So she has taken what she has went through, and just as I have done with my painful experiences, has become an even more compassionate and understanding person. Pain in any form can allow you to enjoy life more, to hug your children tighter, kiss your husband one more time each day, and notice how bright the sun is and just how beautiful even rain can be (especially when you are running up steps all dressed up in heels going to the NKOTB concert~something only Ang and myself would understand!)

Ang and her hubby Rob have two children, gorgeous children, a boy and a girl! They have raised them well, and they will be wonderful adults who will know to treat everyone with respect, even those who have challenges. They don't see people who are different from them as being bad or wrong. Great job, Ang and Rob! When we were in the process of adopting Michael, my husband and I decided to ask Ang and her hubby Rob to be the legal guardians to Michael if, God forbid, anything were to happen to us. Now of course, I see Ang with Michael, I see a Mommy! I see Rob with Michael; I see a Daddy! I really hate the term " legal guardian." I would hope if something happened to us, Michael would call them Mommy and Daddy. That is how good of a friend she is to me! She is also going to be Michael's Godmother in a couple days when he is baptized. Michael is a very lucky little boy.


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. 

Kelbi is considered "Aunt Kelbi" to Michael. She has not only been a wonderful support to me when I needed to vent my frustrations with these awful chronic diseases, a fantastic knowledge base when I had questions about certain treatments that I was considering, and a smiling face when she comes over with lunch and a beautiful gift for Michael. She is the best person to go do things with like Crystal Bowl Meditation. I can't think of anyone I would rather go to that with!!! I have to give her a call to do that again sometime soon, actually. I am due for some Bowl Meditation about now!! She also is a talented photographer who helped us with our photo album for the adoption of Michael. She is a Reiki Master, which is just another connection we have since I am also an energy healer. The universe has somehow brought us together.  


Susan was introduced to me by my counselor. We were both introduced to an energy healer instructor Beth. We learned how to better direct our energy and use it to help others. We began to learn that we are very much "soul sisters." She and I both have spondyloarthropathies. We both have fibromyalgia. We both are learning about energy and its use to better others and the world around us. We both rescue dogs. She is also known as "Aunt Susan" to Michael. She lives a little drive away from us, but she makes the drive to come see her "nephew" and me. Susan has dealt with the pain of arthritis, fibromyalgia as well as other pain in her past and divorce. She is a great friend to go to lunch, get cookies at our fave place, try new places around town, chat online, by phone, and she always saves me on my Blog Talk Radio show by being the only caller. She is a great secret keeper!


I met Carlene when my husband was a visiting professor. I decided to keep myself busy and took a took a class to be an instructor for a self-help class for people with arthritis with the Arthritis Foundations. That is the first time I spoke to Carlene. She is a person who has not only had pain in her life from arthritis and fibromyalgia as well as infertility and a painful childhood, marriage and now a divorce. She has given me strength through her compassion, understanding, courage and hard work. She went back to school after getting married and having a family (a wonderful son). As she learned how to stand on her own two feet and that she did not need a husband to make it in the world, she got a divorce and continued through her schooling. She is studying mental health. She would love to help others with chronic disease/pain conditions. This has made me want to do more. So I have begun to write a book and have started my Blog Talk Radio show. She is a fantastic Mommy. Her son will grow up with such respect for women and people with disabilities and challenges because of Carlene~because he has lived this life with a mother who has denied him nothing although she cannot always do everything the same way others can.

So in summary, 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?



Wednesday, June 1, 2011

My First Guest Blogger!


I have met such a wonderful person and fellow blogger online. She also is a chronic illness blogger who wants to get the word out to people about health, activism and how illness affects us and our daily lives, while keeping it real and fun! Her name is Kelly Christal Johnston, and the name of her blog is Hurting But Hopeful. She describes herself as: "...a mother and wife first, and a patient with Ankylosing Spondylitis second...meant to be an AS Activist, and...take(s) that very seriously. [She] hope(s) [she] can not only teach the world what living with AS is about, but...[she] can help others like [her] deal with the toll it takes on not only our bodies, but our souls. So with this blog...[she] hope(s) you can get to know [her], [her] goals, and more about AS." I chose her as my very first guest blogger! So, please read this wonderful, blog post, by Kelly. She writes from her heart, mind, soul and body!

I Want




I want to be a grandmother one day, I want to sit in a rocking chair on my front porch next to my husband, while I watch my grandkids play in the front yard and drink lemonade.


I want to give all my worries to God, to never have to carry their weight on my shoulders again, to know He will take them and replace them with absolute Faith.


I want my family to know that I will always be here for them.  That I will do anything and everything in my power to make this life the best I can.


I want to be able to take my kids to the park, to the zoo, to the beach without having to worry about medications or the weather or how my body is going to feel that day.


I want the world to know that there is a group of diseases called Spondylitis, and I have one of them, Ankylosing Spondylitis.  I didn’t ask for it, I don’t want it, but it’s here so I need to make the best of it.


I want my body to know that it can fuse my spine, and it can damage all my joints, but it will not damage my spirit and my soul that lives within.


I want my kids to know that I didn’t have this disease before I had them, but I do have it now, and even though I know how hard it is to be a mom with AS, I would never not want to be their mother and I will always try to be the best mom I can be.


I want my friends to know that I hate having to cancel plans, and I hate not being able to answer their phone calls.  I wish I wasnt that sick friend who flakes out.  I will always do the best that I can to be there for them, disease or not.


I want my dad to know that I love him, and I am so proud of him.  I want him to know that even though I can’t work like I used to, that I am still me, and I will still try to make him proud.


I want everyone to know that my mother is in Heaven, and that she has been there for over 10 years, and I still can’t think about what that means.  My heart will never be whole, and I walk around expecting people to see me falling apart.


I want all medical professionals to know that people with pain didn’t ask to hurt.  Please treat us the way you would treat your own parent, spouse, or child, and when a patient tells you they need help, help them without judgement.


I want to wake up without pain, I want to get through an entire day with nothing but happiness and joy.  I want to be carefree and just have fun.


I want to fall asleep with ease, and to sleep like a baby, then to wake up feeling rested and healthy.


I want to look to the future with hope and great expectations.  I want this disease to know it will not keep me from making goals, or from accomplishing them.


I want to be free of bitterness and anger.  I want to let go of the attitude that I am generally unaware of.  I want everyone to like me, I want everyone to know who I really am on the inside.


I want to be healthy.  I want my body to work right, and to be at a healthy weight, to be able to touch my toes, and to pick up my kids.


I want my body to be the 32 years old it is, instead of the 92 years old it feels.


I want to know that all my friends are happy and healthy.  I want them to know they will never be alone, or in pain, or sad again, that we will always have a solution for every problem.


I want to be understood.  I want to be able to communicate my feelings accurately and to be able to help others with my words.


I want my students to know that I cherish the years I had with them.  I want them to know I am proud of them and I love them like they were my own children.


I want everyone to know that the sky is the limit.  Life is what we make it, so lets make it great.


I want my husband to know that I love him more than anything in this world.  He completes me, and our lives may not be perfect, but I am completely in love with him, and I will never give up on us.


I want those of you who read my blog to know that it means so much to me, your comments and encouragement gives me strength I didn’t know I had, and you are not alone as long as I am around.


I want the future to be amazing, I hope it is full of good surprises, full of family and friends, and full of perfect memory making moments.


I want to remember that sometimes things won’t turn out the way I would have wanted, and that I will be ok with that.  I want to always keep in mind that life has this funny way of working itself out.


I want a cure for all illnesses, but especially for Ankylosing Spondylitis, and for the ignorance that surrounds this disease.


What do YOU want?


Did you like the idea of having guest bloggers? If you are interested in being a guest blogger, please send an email to: danamarton74@gmail.com or reply to the comment section of the blog post. Also, start thinking about topics for blog carnivals. I am going to begin hosting blog carnivals with Kelly!!! Yay!!!

Thursday, May 26, 2011

What the heck are biologics?

I had been asked by several people in a Facebook group and also someone had asked me twice on my Blog Talk Radio Show, I Already Gave My Right Arm To Be Ambidextrous! 
if I would post information on the biologics for inflammatory arthritis/psoriasis. I did some research, had my radio show for part 1 about the biologics, and now am compiling everything so my followers can read the information that I gathered. 




I found my information online from Web MD, the National Psoriasis Foundation, Wikipedia, From Your Doctor.Com, MedImmune, the FDA, SkinCarePhysicians.Com, Surgical Biologics, Rheumatology, the Psoriasis Association.

Biologics are among the newer treatments for psoriasis that have revolutionized treatment of moderate to severe psoriasis and psoriatic arthritis and have become an important treatment option for these people that have not responded to other therapies. Unlike other therapies for these conditions, these biologics are considered to be a potentially safer option for long-term therapy. Some of these biologics have been shown to slow or stop the joint damage of psoriatic arthritis.  In the last decade, the Food and Drug Administration (FDA) has approved several biologics for the treatment of plaque psoriasis and psoriatic arthritis. These are a few of the biologics approved for psoriasis: Amevive (alefacept), Enbrel (etanercept), Humira (adalimumab), Remicade (infliximab), and Stelara (ustekinumab). Before the biologics, people with psoriatic arthritis could take medication to alleviate the symptoms, but treatment could not prevent joint damage, which can cause lifelong disability. The biologics also have proven effective for some people when other therapies have not worked. Biologic drugs, or "biologics," are a relatively new class of treatment for psoriasis and psoriatic arthritis treatments. They are given by injection or intravenous (IV) infusion. A biologic is a protein-based drug derived from living cells cultured in a laboratory. Biologics are not new medications. While biologics have been used to treat disease for more than 100 years, the changing of modern day molecular biologic techniques has accelerated their use in modern day medicine tremendously in the last decade. Vaccines and insulin are considered biologics because they are derived from living sources. It is only recently however that biologics that are specifically targeted toward psoriasis and arthritis have begun to emerge as potentially promising new treatment options. Different from the traditional systemic drugs that impact the entire immune system, biologics target specific parts of the immune system. The biologics used to treat psoriatic diseases act by blocking the action of a specific type of immune cell called a T cell, or by blocking proteins in the immune system, such as tumor necrosis factor-alpha (TNF-alpha) or interleukins 12 and 23. These cells and proteins all play a major role in developing psoriasis and psoriatic arthritis. The biologics are taken by injection or by IV infusion. Amevive is administered by intramuscular injection in a medical office. Enbrel, Humira and Simponi are injected in the legs, abdomen or arms, typically by the individual with psoriasis or a family member. Stelara is administered as a subcutaneous injection by a health care provider. Remicade is given through IV infusion in a doctor’s office or infusion center. Biologics are prescribed for individuals with moderate to severe cases of plaque psoriasis and psoriatic arthritis. They are a viable option for those who have not responded to or have experienced harmful side effects from other treatments. The TNF blockers have been shown to reduce the progression of joint damage in psoriatic arthritis. 
 
Immune system cells, T cells and B cells, monitor the body for bacteria, viruses and other infections. When these immune cells come in contact with a foreign substance, they release chemical signals, such as tumor necrosis factor (TNF) and interleukins, that trigger inflammation. In people with psoriasis, the immune system mistakenly activates T cells that travel to the skin and produce excessive amounts of inflammation, resulting in rapid skin cell growth and psoriatic lesions. Biologics inhibit the immune system, reducing inflammation and inhibiting the excessive skin cell growth. Different biologic medications target different portions of the immune system. Some biologics reduce T cell activity, while others reduce the production of tumor necrosis factor (TNF) or interleukins. A doctor may recommend the use of a biologic for people whose psoriasis is moderate to severe, cannot be controlled effectively with other psoriasis treatments, or cannot tolerate other psoriasis medications because of side effects. Talking with a dermatologist who has experience with the biologics is the best way to decide if a biologic is an appropriate treatment option. Before speaking with a dermatologist, it helps to know a bit about the biologics. Biologic agents may be used alone, but are often given with other DMARDs, disease-modifying antirheumatic drugs, (e.g., methotrexate, leflunomide, hydroxychloroquine, sulfasalazine), to increase the benefit and decrease side effects. When patients start biologic agents, they usually also stay on their current dose of nonsteroidal anti-inflammatory (NSAID) and/or corticosteroid (i.e., prednisone) medicines. Some of the TNF inhibitors have been approved for use in juvenile arthritis, Crohn’s colitis, psoriatic arthritis, ankylosing spondylitis and psoriasis.

Biologics are different from other medications for psoriasis and psoriatic arthritis because they are designed to block both diseases early in their development - in the immune system.

Psoriasis and psoriatic arthritis begin in the immune system when certain immune system cells are triggered and become overactive. These overactive cells set off a series of events in the body, eventually causing psoriasis to develop on the skin and arthritis symptoms to develop in the joints. Biologics work for psoriasis and psoriatic arthritis by blocking the action of certain immune cells that play a role in the diseases. In some cases biologics reduce the number of these cells in the skin and blood . In other cases they block the activation of the immune cells or block the psoriasis causing chemicals released by them.



Almost all treatments that work for psoriasis and psoriatic arthritis impact or target the immune system in some way. This is true for Ultra Violet treatment and systemic medications such as methotrexate and cyclosporin. The difference is that their impact on the immune system and body is broad, including the risk of potentially serious side effects on other organs. Biologics are more targeted and should spare the body these broad side effects and they have the potential to be a safer option. Because of the effect these treatments have on the immune system, patients on systemic and biologic treatments may require an annual flu shot.


Biologics are a class of drugs that have been used since 1998 and have been studied for almost 10 years. Overall, they have been given to more than 600,000 people worldwide. A “biologic” drug copies the effects of substances naturally made by your body's immune system. Biologic agents are genetically engineered drugs – meaning that human genes that normally help with the production of these natural human immune proteins (i.e., an antibody to TNF) are used in non-human cell cultures to make large amounts of a biologic drug. These drugs are given to decrease inflammation by interfering with biologic substances that cause or worsen inflammation. These new biologic agents can specifically affect some of the abnormalities of the immune system that lead to the joint inflammation and other abnormalities seen in rheumatoid arthritis and so help treat its symptoms. In the last decade, there have been great advances in treating rheumatoid arthritis, especially for patients whose arthritis does not respond to traditional DMARDs, with the most important advance being the development of the biologics. There are a number of biologics approved to treat rheumatoid arthritis. Biologics are genetically engineered proteins derived from human genes so they are designed to inhibit specific components of the immune system that play leading roles in fueling inflammation, which is a key feature of rheumatoid arthritis. Biologics are used to treat moderate to severe rheumatoid arthritis that has not responded adequately to other treatments. They differ significantly from traditional drugs used to treat rheumatoid arthritis in that they target specific components of the immune system instead of broadly affecting many areas of the immune system. Other biologics are being studied to treat rheumatoid arthritis as well as other conditions. Biologics may be used alone but are commonly given along with other rheumatoid arthritis medications. Biologics have been shown to help slow progression of rheumatoid arthritis when all other treatments have failed to do so. Aggressive rheumatoid arthritis treatment is known to help prevent long-term disability from RA. Biologic agents have been approved by the FDA to treat moderate to severe rheumatoid arthritis that has not responded to an adequate trial of one or more of the traditional DMARDs. Because of their expense and side effects, most people with mild to moderate rheumatoid arthritis are treated with methotrexate before a biologic agent is used unless they are unable to take methotrexate because of side effects or other conditions. Currently available biologic agents act as inhibitors of the cytokines IL-1 or TNF. Cytokines are messenger molecules that the body's cells make to act to excite other immune system cells. Interleukin-1 (IL-1) and tumor necrosis factor (TNF) are made in large amounts in rheumatoid arthritis and other forms of inflammation. In these diseases, TNF or IL-1 act to increase inflammation, like gasoline on a fire. However, in rheumatoid arthritis TNF or IL-1 (the gasoline) acts by exciting the inflamed joint (the fire). Hence, these cytokines actually worsen inflammation and joint damage. Biologic agents were made to specifically attach to TNF or IL-1 and inhibit or inactivate them.



For rheumatoid arthritis, the starting doses have been decided due to large clinical trials. Biologic agents must be given by an injection under the skin--etanercept (brand name Enbrel), adalimumab (brand name Humira) and anakinra (brand name Kineret)--or by intravenous (IV) infusion--infliximab (Remicade). These medications must be stored in a refrigerator and warmed to room temperature before use. Patient education information and videos are available for the self injectable medicines. A nurse or doctor can teach you about the medicine and how to give the injections. It is helpful to bring a spouse or friend with you to learn how to do the injections. You can inject the medicine in the front of your thighs or abdomen. Injection sites should be rotated so that the same site is not used repeatedly. Most patients who are afraid to inject themselves are usually able to give these injections repeatedly with little or no discomfort. Remicade infusions are either done through an IV line in the doctor’s office or in specialized infusion centers. These treatments usually take 2-3 hours, during which time the patient can rest, read, watch TV or do office work without discomfort.


Biologic agents usually work quickly to relieve the symptoms and swelling associated with rheumatoid arthritis. Studies show that most patients will improve within 4-6 weeks of treatment, but most patients receiving Enbrel, Humira, or Remicade will notice marked improvement after the first or second injection/infusion.

Key features of the biologic drugs:  taken by injection ot infusion ( either in an infusion center or at home depending on the specific medication);  treatment schedule and frequency vary; will improve psoriasis and psoriatic arthritis for some people but not all;  short term side effects are generally minor although an allergic reaction to the injection can occur; long term safety is still being evaluated;  they are expensive; they must be taken continuously to maintain improvement.


The most common side effect seen with biologics is pain and rash at the injection site in less than 30% of patients. As with any drugs that suppress the immune system, biologic therapy poses an increased risk of infections and other diseases. Patients taking biologics should tell their doctor immediately if they develop a persistent fever or unexplained symptoms. Vaccinations that prevent infections should be considered prior to administration of biologics. Patients should not receive live vaccines while taking biologic medications. Biologics may also cause some chronic diseases that are dormant (such as tuberculosis) to flare, and they are not recommended for people with conditions such as multiple sclerosis and congestive heart failure. All patients should be skin tested for tuberculosis before even starting biologics. Since biologic therapy is in its early stages of use, some of the long-term effects of using these medications aren't known, and your doctor should regularly monitor your health while using them. Biologics are also more expensive than traditional treatments. However, the evidence suggests that they work well and pose fewer risks than other systemic therapies. One disadvantage to current biologic medications is that they must be given either by injection or by intravenous infusion. However, researchers are currently working on developing a biologic that can be taken orally.


Although animal studies of biologics have shown no effect on fertility or effects on the fetus, these studies cannot always predict the effects in humans. Pregnant women should receive these drugs only if they are clearly needed because the effects on the developing child are still unknown. Biologics are commonly discontinued before surgery until wounds have healed and the risk of infection has passed. As a general rule, different biologic therapies should not be taken at the same time. With any treatment, it is important to meet with your doctor regularly to monitor your progress and to evaluate side effects. Your doctor may periodically order blood tests or other tests to determine the effectiveness of your treatment and detect side effects that cannot necessarily be seen on the outside. Biologic drugs have affected the treatment of rheumatoid arthritis tremendously. As mentioned above, newer biologics are being developed that either provide alternative methods or frequency of administration or different targets of action. The most common side effects seen with the injectable medicines include skin reactions, which are called “injection site reactions.” Skin reactions to injection occur in less than 30% of patients, and these patients usually complain of localized rash, burning, or itching at the site of injection. With Enbrel and Humira these skin reactions may last up to a week. Kineret injection skin reactions may last for 10-14 days before fading away without scar. The most significant side effect of these medications is an increase the risk of all types of infections, including tuberculosis (TB). Before starting an anti-TNF medication a TB skin test is usually done. Treatment with these agents should be stopped while you have an active infection and are taking an antibiotic or if you have a high fever. Remicade can cause allergic reactions. There are also rare neurologic complications from the anti-TNF medications, and people with multiple sclerosis should not use them. People with significant congestive heart failure should not take the anti-TNF agents.

Do not take biologics if: your immune system is significantly compromised; you have an active infection. Screening for tuberculosis (TB) or other infectious diseases is required before starting treatment with Enbrel, Humira, Remicade, Simponi and Stelara.



People considering taking a biologic drug should talk with their doctor about the short- and long-term side effects and risks. It is important to weigh the risks verses the benefits of using the drugs. Biologics can increase the risk of infection. Individuals who develop any sign of an infection such as a fever, cough or flu-like symptoms or have any cuts or open sores should contact their doctor right away. The impact of biologics on a developing fetuses or nursing infants is not known. Biologics should only be prescribed to pregnant or nursing women if there is a clear medical need.



Common side effects for biologics include: respiratory infections; flu-like symptoms; injection site reactions. These side effects are generally mild and in most cases do not cause individuals to stop taking the medication.



Rare side effects for biologics include: serious nervous system disorders, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes have: blood disorders; certain types of cancer. Call your doctor if you are experiencing any side effects with biologic drugs.



All of the biologics currently on the market can be used with other treatments such as phototherapy or topicals. Data suggests that phototherapy in combination with Amevive may improve the outcome. Using phototherapy along with Remicade may increase your risk of skin cancer. Enbrel, Humira, and Remicade are safe and effective when taken with methotrexate. Talk to your doctor about whether using any other treatments with a biologic is right for you.

Most medications are created by combining chemicals. In contrast biologics are made from living human or animal proteins. The medications made from these proteins are specifically designed to act in certain ways in the body to correct something going wrong that leads to disease. Currently, all biologics used for the treatment of psoriasis must be injected or given by IV. They currently cannot be taken by mouth because the protein molecules are too large to be absorbed by the intestine and are too fragile for  the stomach acid.  


Biologics work by targeting the underlying cause of psoriasis — excessive skin cell growth because of an overactive immune system. Although they can often provide long periods of clear skin, they are not a cure for psoriasis and ongoing treatment is necessary.

Biologic agents represent a new kind of treatment for patients with inflammatory arthritis, like rheumatoid arthritis. They are expensive, generally effective, well tolerated and quite safe in most patients, but do increase the risk of infections. Their safety can be enhanced by proper screening procedures (TB skin test) and periodic monitoring of blood tests by your doctor. Patients should request and read educational materials from the doctor who prescribes these medicines. Watching instructional videos and having another person give you these injections can minimize the fear of injection yourself.





Amevive (alefacept) works by blocking the activation of a type of white blood cell called a T cell, which results in a reduction in skin inflammation. T cells normally help the body rid itself of foreign invaders such as viruses, fungi and bacteria. However, in psoriasis the T cell mistakenly attacks the skin; this sets off a chain or "cascade" of events that causes psoriasis lesions to form and become inflamed. Amevive blocks the action of T cells to reduce inflammation and inhibit skin cell overgrowth. This leads to a clearing of lesions and other psoriasis symptoms. The medication is given by intramuscular (IM) injection, usually in the doctor's office. A typical course with Amevive is one intramuscular injection per week for twelve weeks, followed by additional 12-week treatment cycles if necessary. Treatment cycles must be separated by 12 week periods off treatment. Blood tests are performed regularly to monitor T-cell counts. Each doctor may tailor the use of Amevive according to how well someone responds to treatment and tolerates the medication.









Stelara (ustekinumab) works by selectively targeting the cytokines interleukin-12 (IL12) and interleukin 23 (IL23). Interleukins-12/23 are also cytokines which are thought to promote the inflammation associated with psoriasis. Stelara was FDA approved for the treatment of psoriasis in 2009. It works by blocking interleukin-12 and interleukin-23, immune-system proteins linked to inflammation and the rapid skin cell growth underlying psoriasis. Stelara is usually given by injection twice in the first month, and then every 12 weeks. This results in approximately 5 treatments per year. The relatively low number of injections and long duration between treatments are considered to be some of the benefits of Stelara. Although other biologic medications may be self-injected at home, Stelara should be administered by a medical professional. Patients should be screened for latent tuberculosis (TB) before taking Stelara and blood tests may be performed to monitor the immune system. Each doctor may tailor the use of Stelara according to how well someone responds to treatment and tolerates the medication.






















































Actemra, given by monthly hour-long infusions, is the first IL-6 inhibitor for rheumatoid arthritis. It can be used alone or in combination with disease-modifying drugs such as methotrexate. IL-6, or interleukin-6, is a chemical messenger of the immune system. The FDA has approved Actemra for moderate to severe rheumatoid arthritis in patients who have not responded to one or more TNF inhibitors. TNF inhibitors include Cimzia, Enbrel, Humira, Remicade, and Simponi.The most common adverse effects include upper respiratory tract infection, inflammation of the nose or throat, headache, high blood pressure, and elevated liver enzyme level. 

Cimzia works by blocking the action of a substance in your body called tumor necrosis factor (TNF). This reduces inflammation and the pain and stiffness from rheumatoid arthritis and can improve fatigue within a couple of weeks. Cimzia is an injection. Through the use of prefilled syringes, you can give it to yourself once you are taught to do so by a doctor or nurse. After the initial doses, Cimzia can be taken every 2 to 4 weeks, depending on the dose your doctor feels is right for you. In addition to pain at the injection site, the most common side effects seen with Cimzia are upper respiratory infections, such as a cold, rash, and urinary tract infections.


Enbrel reduces joint inflammation and damage from rheumatoid arthritis by blocking a chemical activator of inflammation called tumor necrosis factor (TNF). Enbrel is also an injection. Enbrel is given by self-injection under the skin once or twice a week. Patients can learn to give their own injections or receive them from a family member or caregiver who has had proper instruction. Preloaded syringes are available as self-injectable “click-pens.”
In addition to pain at the injection site, Enbrel's most common side effects are infection, including upper respiratory infections like a cold, headache, and runny nose. Enbrel is FDA approved for the treatment of psorias, psoriatic arthritis and rheumatoid arthritis. It works by inhibiting the activity of TNF (tumor necrosis factor), the chemical “messenger” that triggers inflammation. Enbrel is given as a subcutaneous injection (under the skin) similar to the insulin used by people with diabetes. People can learn to administer subcutaneous injections themselves at home. A typical treatment course with Enbrel is two subcutaneous injections per week for three months. A weekly maintenance dose may be recommended. Symptoms often return within a month or longer after stopping the medication.

Enbrel may be used alone or in combination with other psoriasis medications, including methothrexate. Blood tests may be performed to monitor the immune system during therapy with Enbrel. Each doctor may tailor the use of Enbrel according to how well someone responds to treatment and tolerates the medication.


Humira reduces joint inflammation and damage from rheumatoid arthritis by blocking a chemical activator of inflammation called tumor necrosis factor (TNF). Humira is an injection. It is given by self-injection under the skin once every two weeks. Patients can learn to give their own injections or receive them from a family member or caregiver who has had proper instruction. Preloaded syringes are available as self-injectable “click-pens.” In addition to pain at the injection site, the most common side effects with Humira are upper respiratory infection, headache, and rash. Humira has been prescribed for rheumatoid and psoriatic arthritis and was FDA-approved for the treatment of psoriasis in 2008. Like Enbrel, Humira helps clear psoriasis by interrupting the activity of TNF (tumor necrosis factor).
Humira is given as a subcutaneous injection (under the skin) similar to the insulin used by people with diabetes. A typical treatment course with Humira is one subcutaneous injection every two weeks. These injections are given on an ongoing basis to relieve symptoms and stave off future outbreaks. Humira may be used alone or in combination with methotrexate or phototherapy. Patients should be screened for latent tuberculosis (TB) before taking Humira. Blood tests may be performed to monitor the immune system. Each doctor may tailor the use of Humira according to how well someone responds to treatment and tolerates the medication.


Kineret is a protein that reduces joint inflammation by blocking the action of the chemical messenger interleukin-1. The drug is administered as one injection daily (can be self-injected or given by another individual). In addition to pain at the injection site, the most common effects with Kineret are upper respiratory infection, headache, and nausea.


Orencia is used to treat moderate to severe rheumatoid arthritis. Orencia is a protein that blocks signals that are needed to activate T-cells of the immune system. Activated T-cells play an important role in the development of rheumatoid arthritis. Orencia is approved to reduce the symptoms and stop the progression of RA in patients not helped by methotrexate or other biologics. It can be taken alone or with other medications except biologics. Orencia is given by intravenous infusion monthly. Side effects include serious allergic infusion reactions. Symptoms of infusion reactions include flu-like illness, fever, chills, nausea, and headache. Caution should be used in prescribing Orencia for patients with chronic obstructive pulmonary disease (COPD). Orencia's most common side effects are headache, runny nose, and dizziness.


Like Enbrel and Humira, Remicade reduces inflammation and damage from rheumatoid arthritis by blocking a chemical activator of inflammation, tumor necrosis factor (TNF).
Remicade is given by intravenous infusion in the doctor's office, an infusion center, or hospital. Each infusion takes about two hours. The intravenous treatments are given three times during the first six weeks of therapy, then every eight weeks thereafter. Remicade is often given with methotrexate for treating rheumatoid arthritis.
Because it is administered intravenously, Remicade has the potential to cause an allergic infusion reaction, and patients are therefore monitored during infusions.
The most common side effects of Remicade are upper respiratory infection, headache, and nausea. First used as a treatment for psoriatic and rheumatoid arthritis, Remicade is also FDA-approved for the treatment of moderate to severe psoriasis. Like other biologics used for the treatment of psoriasis, Remicade works by blocking the action of TNF. Remicade is administered via IV (intravenous) infusion in a doctor's office or infusion center. It is commonly administered three times in six weeks, and then once every eight weeks. Remicade may be used alone or in combination with methotrexate. Patients should be screened for latent tuberculosis (TB) before taking Remicade and regular blood tests may be performed. Each doctor may tailor the use of Remicade according to how well someone responds to treatment and tolerates the medication.


Rituxan is approved for patients with moderate-to-severe rheumatoid arthritis who have not improved with TNF-blockers, such as Enbrel, Humira, or Remicade. Rituxan is an antibody protein that works by targeting and reducing the number of specialized white blood cells, called B cells, in the blood. Rituxan is given as two intravenous infusions -- separated two weeks apart -- in combination with methotrexate. Repeat courses of Rituxan are considered after four to eight months. Because it is administered intravenously, Rituxan has the potential to cause an allergic infusion reaction, and patients are therefore monitored during infusions. Symptoms of infusion reactions include flu-like illness, fever, chills, nausea, and headache. Rituxan's most common side effects are high blood pressure, nausea, and upper respiratory infection.


Like Remicade, Enbrel, and Humira, Simponi blocks the effects of TNF. It blocks the effects of a chemical that triggers inflammation. Simponi should be used in combination with oral methotrexate, and it’s intended for adults with moderate to severe symptoms.  Simponi is taken once a month by injection. After a health care professional shows you how to do it, you can give yourself the injection at home with either a prefilled syringe or an autoinjector.
The most common side effects include upper respiratory infections, runny nose, and abnormal liver tests.

Raptiva (efalizumab), a biologic that blocks the activation of T-cells, was approved in 2003 by the FDA. It was voluntarily taken off the market in 2009 due to safety concerns. For more information about this matter, visit the Food and Drug Administration's website.
Enbrel (etanercept), Humira (adalimumab), Remicade (infliximab) and Simponi (golimumab) are drugs that block TNF-alpha. TNF-alpha is an immune system mediator called a cytokine that is a key mediator of inflammation. In psoriasis and psoriatic arthritis, there is excess production of TNF-alpha in the skin or joints that leads to the rapid growth of skin cells and/or damage to joint tissue. Blocking the TNF-alpha helps to stop the inflammatory cycle of psoriatic diseases.

Biologics prescribed for the treatment are not always covered by health insurance. It is important to check with your health insurance carrier to see if and how biologics are covered. Some insurance companies offer partial coverage, require prior authorization, or work only with certain pharmacies through mail-order programs. Also, some biologics manufacturers provide information on how to work with insurance companies and offer reduced-cost medication for qualifying patients.
 
The biologic medications have been investigated by the National Institute for Health and Clinical Evidence (NICE) who have issued guidelines on when they can be prescribed. NICE have issued guidelines for five of the biologics used to treat psoriasis, Etanercept (Enbrel), Efalizumab (Raptiva), Infliximab (Remicade) and Adalimumab (Humira) and Ustekinumab (Stelara). However, since issuing the guidance, Raptiva has had its marketing authorisation suspended and so will not be prescribed.

NICE recommends that Enbrel, Humira and Stelara be prescribed for people with severe psoriasis who have not responded to other systemic treatments such as phototherapy, Methotrexate, Cyclosporin and Acitretin, or if these treatments cause a reaction--which means the person should not take them--or if the person has another condition or medication--which means that they should not take the other systemic treatments. If the psoriasis doesn't show a measurable change for the better after 12 weeks of therapy (in the case of Enbrel and Humira) NICE recommends that the treatment be stopped. If the psoriasis doesn't show any change (in the case of Stelara) after 16 weeks of starting treatment, NICE recommends that the treatment be stopped. Remicade can be offered for the treatment of very severe plaque psoriasis if the psoriasis has not responded to other systemic treatments such as phototherapy, Methotrexate or Cyclosporin. If the psoriasis has not shown any measurable change after 10 weeks then treatment should be stopped.

NICE have issued guidelines for three of the biologics used to treat severe Psoriatic Arthritis--Enbrel, Remicade and Humira. NICE recommends that Enbrel, Remicade and Humira be prescribed for people with severe psoriatic arthritis when the person has three or more tender joints and three or more swollen joints and at least two other DMARDs given on their own, or together, have not worked. If the psoriatic arthritis has not shown any measured response at 12 weeks, NICE recommends that the treatment be stopped.

If you have any questions, please tune into my Blog Talk Radio Show. Call in or sign in to the chat room with your questions live! Part 2 is live May 26th at 11 P.M. ET! Call in # is (714) 459-3943, press 1 if you want to talk on air!  I would love to hear from you!!!

MediGuard.Org  has info on a safety alert regarding biologics. Please read.

2012

2012
Performance 5 days before my Hip Replacement Surgery!

2012

2012
Performance 5 Days Prior to my Hip Replacement Surgery.

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