Weathering My Chronic Body's Storms!!!

Time for yet another MOWer's blog carnival post.

It's interesting how people choose to use weather terminology for everyday occurrences.

Your room looks like a tornado hit it!

The bathtub overflowed, and now the bathroom is a flood!

The dog devoured everything; looks like a cyclone tour through here!

That child is as mean as a tsunami hitting land!

Those birds were like hail as they pecked at the roof.

OK, you get the idea. I hope. I could go on and on. So if we could talk about anything in our daily lives so descriptively like it was something to do with the weather, imagine how we could describe our bodies. I'm not just talking about any bodies. I'm talking about weathering the storms with chronically ill bodies.

Our bodies with chronic illness go though so much and weather many, many different storms. Today, as I sit in the infusion center getting my Remicade infusion, I can tell you that my body has been through storm after storm and so many other weather conditions: rain, hail, sleet, tornado, cyclone, tsunami, blizzard, flood, torrential down-pour, icy roads, slick sidewalks, clouds, excessive heat, thunderstorms, earthquakes, windstorms, breeze, sunshine, clear skies and rainbows.

It's interesting too because so many people with chronic illnesses, especially pain and joint conditions, put the blame on different weather patterns for how they feel day to day. Many say if the barometric pattern changes suddenly so does the pain, or if it drops or rises, so does the way they feel. For me, if the pressure drops below 30, I know it. I have pain and fatigue and general malaise. If it rises above 30, I feel out of it, and my sinus pressure tends to increase. But I also feel it in my bones if there is a sudden increase or decrease in the pressure. I like to consider myself a human barometer because my body will let me know just before the pressure is going to rise, fall or change dramatically. Many times that tells me when a storm is on its way, when the humidity is coming, etc. I also don't do well with increased humidity and precipitation, which many times happens when the pressure drops or rises. The body know!

So enough of the literal, actual weather correlation, let's talk about my body. How have I weathered my own storms?

RAIN

When it rains, it pours! With my body, I can start with just a little cold or allergies, and it is never anything little. Just these last couple of weeks, my allergies have been fierce. I began to cough from the post nasal drip, the coughing got worse and worse, and the pain increased. How can coughing be painful? It's painful with a little thing that turns into a bigger thing called costochondritis. It is an inflammation of the connective tissue that attaches the ribs to the breastbone. In my case it involves more than just that but also the rest of the rib cage in the intercostal spacing. Every time I take a breath, it hurts. When I have a bad cough, it really hurts because the deep breathing is nearly impossible. I thought I was winded from my asthma, but it turns out I was feeling this way because I wasn't allowing myself to take a deep breath. It hurt too damn bad! Who knew that joint diseases could be such a pain! Ha, I made a funny! Of course they are a pain. I mean a pain in areas like breathing. Well, they are, and people need to know this because if you have costochondritis, and you get a cough with it, it not only rains, it pours. You are looking at torrential downpours, my friends!!!

HAIL, SLEET, ICY ROADS AND SLICK STREETS

Hail and sleet, to me, is when my body is bombarded in all areas at the same time. It happens a lot, unfortunately with chronic pain conditions. Just recently, I was driving down the road and realized I couldn't move my right pointer finger. It was stuck, swollen and red. The pain was unbearable. Now, I know what you are thinking, "Pain in your one finger? Big flipping deal." Well, the pain was cruel. My joint pain isn't just like when you stub your toe, people! It is always real, absolute, moderate to severe pain. I never complain though, I just use it to educate people about chronic pain. So I had to drive with my other fingers. Later that day, I realized the way I was holding the stuck finger, started making my wrist hurt. It began to swell and get painful and swollen. Then my wrist was stuck!  As the day progressed, my elbow stuck, was swollen and red! Then the other wrist and elbow were swollen. Then my knees were red and hot. Then my ankles were both swollen. Then the bottom of my feet began to hurt so badly I could hardly walk on them. I could hardly move. I was worried earlier that day about driving. It was hard to turn the steering wheel. Now I couldn't walk to the bathroom from the couch. It was my body weathering yet another storm. It was sleeting and hailing, and it was attacking my body alone in the middle of a hot July summer! I was driving my car on icy roads and walking on slippery sidewalks, and it was dry, sunny and super hot! Can you even imagine?

TORNADO, CYCLONE, TSUNAMI, HURRICANE, FLOOD

I woke up knowing that I was getting a migraine. I have aura's that tell me one is coming. When I have a migraine, my fibro flares. I don't really know why, but it happens with me. It never fails. With my fibro, it makes it so difficult to get up and go. The fatigue is overwhelming, and it is so hard to do anything that is just the everyday stuff~get up, get dressed, take a shower, and mommy stuff~so I find it impossible to muster up any energy to exercise, even just to take a short walk. So I will just stay on the couch all day and set my son up next to me. Not moving around will make me so stiff and sore, and one by one, my joints will flare up. The psoriatic arthritis will flare. On a particular occasion that this happened, I also wouldn't eat or drink enough, so the Sjogren's symptoms flared~my eyes, mouth and nose got extra dry. I then got sores in my nose, and mouth. I had to see my cornea doctor because my tear duct was infected from getting too dry, and I had to have the tear duct plug surgically removed and the tear duct drained. I had to go to the ENT, and had to have my nose cauterized because it wouldn't stop bleeding from being so dry. Then my psoriasis flared. The scalp psoriasis was the worst. I was even losing hair. My bowels were messed up and I had to see the GI doctor and have a colonoscopy scheduled...I had weathered my tornado, cyclone, hurricane and tsunami. Then there is the flood. There is so much to wait for after so much has happened at the same time to your body. It takes a while to recover. Imagine the clean up after these storms! It can take so long to feel better, and then to get back into normalcy again. The flood waters do go down, but it takes time.

BLIZZARD, WINDSTORM, EXCESSIVE HEAT

One day my bones literally feel like they are so brittle that they are barely surviving a blizzard, and have frozen solid, that a windstorm could blow through and break every single one to pieces. Other days my body feels like it is in an oven on broil, and I am overheated. With many auto-immune diseases, we run fevers that are caused by unknown factors. Mine occur usually at night before bedtime or while I sleep. I sweat and get chills just as though I were sick, but it is all part of my auto-immune illness. How my body can burn up from such excessive heat like that; it's like when they talk about heat warnings and heat alerts in the summer time! It can happen any time for me, even in the middle of winter. What I find so crazy about this is that my body is burning up from excessive heat, yet my bones feel like they are stuck in a blizzard with windchill factors below zero. The bones are so sore and achy that it reminds me of being out in the cold, and shivering, but I'm hot! If a windstorm knocked me over, I would crumble! Are you picturing the imagery here? I hope you are.

EARTHQUAKE

An earthquake is such a great word to use when referring to my body. I have all these little fault lines throughout my different joints, well it was 6 in all but 2 were already replaced. My hips, knees and shoulders all have Avascular Necrosis. Because the blood supply doesn't reach the joint, the joint dies, then collapses, and then the only thing left to do is replace the joint. When you look at the affected joint on an X-ray or MRI, there is a crack or line that resembles the letter "C" that goes through the middle of the joint. That is my fault line. After a while, the weight-bearing joints especially, can't take the pressure on the joint anymore, and collapse and crumble. I had my left hip collapse in 2003 and my left shoulder collapse in 2009. It's actually strange that the shoulder collapsed before the the other hip and the knees since it isn't a weight-bearing joint. But basically, it's a similar idea. I couldn't carry anything around anymore on that joint, I couldn't lift or push with that arm anymore. Then one morning, I woke up and I could move it no longer! It had collapsed. These joints move at the fault line and collapse, their own version of an earthquake. So now I have to wait for each one of the remaining 4 joints affected with AVN to have their own earthquake, probably at separate times, and most likely unexpectedly. I have small quakes, where the joint moves just so slightly at the fault line, like if I go from a sitting position to a standing position, vice-versa, or if I sit for a long time, or if I exercise and move around an excessive amount.  I have endured 2 large earthquakes, and will endure 4 more, unless the AVN spreads to other joints, then possibly more, and I will endure small quakes daily for many, many years. Ah, a wonderful picture~sarcasm!!!

CLOUDS, BREEZE, CLEAR SKIES, SUNSHINE, RAINBOWS

We all have bad pain days, and we all have better pain days. I can't say that with chronic pain we ever really have good pain days, but we can have good days.  I consider days that have less pain cloudy or partly cloudy, and sometimes during that day, the pain is even less, so I see that as a nice breeze that blows by. If the breeze blows hard enough, then there are clear skies. When there are clear skies, these are days that are definitely better days. I can do more stuff, like make dinner, and exercise, etc. Then when there is sunshine, well those are the even better days where I can do stuff that I like to do not just want I need to do, like dance and swim, and play more with my son. And then there are the rainbows! Yes, you don't see rainbow days too much. If I had to call a day a "good day" for a chronic, I'd call it a rainbow day. These are the very rare days when I can catch a movie, go shopping, take a drive somewhere. These are harder now that the psoriatic arthritis has started to involve the spine~spondylitis. I can't sit for a long time in the same position or stand for a long time. Exercise helps a bit, but if I am flaring, it's hard to start exercise. I mostly look forward to partly cloudy, breezy, clear sky days. Sunshine and rainbows I dream about!

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!!!!!

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!

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!

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)

 

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.

"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.

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!

 

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?