Archive for the Week 06: Weathering The Storm Category

Weathering My Chronic Body’s Storms By Dana

Posted in The Blogs By Dana, Week 06: Weathering The Storm on August 15, 2011 by Cookie Has A.S.

Time for yet another MOWer’s blog carnival post.

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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.

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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.

 
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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!

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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!!!

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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?

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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.

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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.

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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!!!

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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!

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Weathering Storms By Jackie

Posted in The Blogs By Jackie, Week 06: Weathering The Storm on August 15, 2011 by Cookie Has A.S.
I love the idea of AS being likened to a storm, sometimes roaring and trying to knock you off your feet and flatten  you, at other times grumbling quietly in the back ground and you are just waiting and waiting and watching for it to spring to life, and then there is the calm………..
After so many years and so much fusing, I don’t have too many hurricanes these days, thank goodness, but the quiet grumbling can be every bit as unsettling. That is how I tend to be most of the time these days. Never mad swirling frightening storm, but just a grumble with the odd skirl, just enough to stop you from relaxing, but enough to make sure you don’t give up on the meds!!
I can remember well some of the bad storms, the screaming and crying with the pain of it all, wandering the house at night holding onto the wall as you are so tired of being so uncomfortable in bed and unable to sleep, and feeling like banging your head off the wall you are holding onto to get some release from it all. Trying to travel to get to the doctor and ending up crouching on the floor in the back of a cab as you couldn’t take the pain of feeling every pothole in the road. But you all know what I mean, you have all been there. You do toughen up and your pain threshold rises up. It has to.
But we come through it, there is no point in worrying about it, it doesn’t help. And we learn to zip our mouths when someone tells you they know how you feel as they hurt their back lifting something heavy……
We get better and better at dealing with it, we get better and better at hiding it, and better and better at living with it. We weather the storm and learn to enjoy the calm, be apprehensive about the quiet grumbling, but when the big one hits – well been there done that, we weather it, we get through it, till the next time.

Baby Steps And Deep Breaths By Kate

Posted in The Blogs By Kate, Week 06: Weathering The Storm on August 15, 2011 by Cookie Has A.S.

http://komodolover.files.wordpress.com/2011/08/babies-breath.jpgSome days the physical pain of ankylosing spondylitis is too much and I have to find a way to get through it and keep my head. So I have to learn to reach out to my friends and loved ones who will listen. If they can’t be there then I have my blog or my personal journal to write in here at home. Learning to weather the storms was not an easy thing and some days it’s harder than others. Some days I just simply want a hug or shoulder to cry on. Some days I just want to be left alone to lie in bed and not be touched. I surely couldn’t live without my pain medicine, Biofreeze, Voltaren gel, ice packs or heating pad. Depending on where or when the pain is depends on what I use but emotionally weathering the storm it gets much trickier. Being chronically ill we depend on loved ones and friends sometimes for that little boost of confidence that maybe this one time we can get through this pain or this one time it won’t last forever. Just those simple reminders can break a ruminating thought that would otherwise send us into a spiraling depression from which we might feel there is no escape. If you know someone in pain encourage them that it won’t last forever. Help them weather the storm. Whether it’s emotional or physical pain. You just might get them through the next five minutes they thought they couldn’t get through. It’s all about baby steps and deep breaths.

I’m Singing In The Rain By Cookie

Posted in The Blogs By Cookie, Week 06: Weathering The Storm on August 15, 2011 by Cookie Has A.S.

This topic has been such a struggle for me, I have thought about it for a couple of weeks. What would I write about? I was approached two years ago with the idea of writing a blog, and felt stupid when I asked what a blog was. I told them I would think about it and never again brought it up. Then while reading Kelly’s blog I was touched beyond words and inspired to try. I honestly do not believe that my words will ever inspire anyone or make the best blogger award, but they do bring me a sense of peace, hope and self-worth. I am able to express my self without reservation. Sometimes when you try to tell someone how you feel the emotions or the fears keep the words locked up inside of you. I have struggled with this subject; I even spoke to Kelly on the phone about it. She told me you don’t have to write a blog on every topic, but the thing is I do. She said write about one thing you have gone through, she makes it seem so easy when it comes to writing blogs. Still nothing. Oh I had cute ideas and thoughts to put down but nothing that touched me. I almost decided that I would sit this one out. I wouldn’t be able to weather the storm of challenging topics. I laughed at myself and thought girl, all the things you have weathered and survived you are going to let one little blog on a difficult topic get you. Yes, I was. Every day I tossed thoughts in my head about what I should write about and here I am writing now and not one idea do I have to make this a wonderful, touching or inspiring blog. Maybe that isn’t the reason we are supposed to be doing this. Life isn’t always wonderful and stories shared about our lives are not always inspiring and some people that we do come into contact will never be touched by our words. So what? I write for myself. I write because I need to. We all have our reasons, some we can share and some we can’t. So I plan to weather this blog, letter by letter. In the beginning I was going to be cute and say wouldn’t it be  cool, if you could put your dna code into a computer and it would give you, your weekly forecast. Monday you will be mildly flaring. Tuesday you will be depressed. Wednesday you will have severe back pain. Thursday and Friday look to be the same. Saturday will be mildly aching and Sunday you will feel normal. Now that would be one hell of an application for your Iphone. Then I thought I would share with you how weather affects me. I always know when it’s going to rain, my hips will ache, and I feel like the pressure in my chest is going to explode. I spoke to my doctor about it thinking I was losing my mind. He told me the barometer changes in the weather affect people with Ankylosing Spondylistis. I am almost as accurate as our local weatherman is, maybe that will be my new job in the future. Then I was going to share with you the storms of Ankylosing Spondylitis that I have weathered in my life. I remember at the age of twenty-one stepping out of bed, and a shooting pain in my left heel. I couldn’t walk the pain was so unbearable. I wore shoes that were 3 sizes to large for me for years, because I had a 2 to 3 inch knot on my heel in the back of my foot. Was horrible to look at. It was hot to touch and so tender I couldn’t stand to touch it. I suffered with this for many years. After about three years of remicade treatment I was able to wear my normal size shoe again. I wear a size six and it was wonderful to get rid of all the size nines. To this day I am still unable to walk barefoot even on carpet. I step out of the tub, into shoes. I get out of bed into shoes. I am never without a pair of sandals at my side. I can only wear sandals, because the pain in my feet is so unbearable. Then I was going to tell you about the pain in my neck and arms that I suffered with for years. Doctors told me it was tension. My hands were always tingling and had sharp pains it was like when your feet fall asleep. I suffered with that pain for four years. One morning I woke up and couldn’t speak, or feel my face. I went into the restroom and my face was turned to the side. I appeared to have had a stroke. My father had one in 1984 that left him paralyzed and unable to speak, so I was terrified and frightened about my future and how I would care for my family. I ended up in the hospital and had to have an emergency cervical fusion on my neck. I was sitting in the room waiting for them to take me back to surgery when the nurse came in carrying my chart. She said all right Judy are you ready for your back surgery? Fear, fear that I had never felt before shot through me, and up off the bed and down the hall I went. It was not easy  convincing me to go back and have the surgery. The reason for my absolute terror was the fact that my twenty-year-old cousin had gone in as an outpatient to have her tubes tied, she was gassed accidentally and died. I was fifteen at the time and that fear has consumed me every time I have been put to sleep, as of today that is 31 times. The intubation done on me during this surgery was so difficult that to this day my fear is so strong that I have put off a life or death surgery for over two years. I thought maybe I would share with you the storms I have weathered in life, but was unsure of what to share. I worry if my husband will be able to weather the storms of Ankylosing Spondylitis wife and marriage. I came across a picture of Eeyore, with his little head down, walking with a cloud of rain over his head and thought he should be the poster child for Ankylosing Spondylitis. He shuffles slowly where ever he goes with a touch of sadness about him no matter what the occasion is in his life.

That is how I feel, no matter what I am doing or who I am with, there is always a touch of sadness in me. This disease has taken a part of me away, causing my loved ones to never know who I might of been. This disease changes you, not only your body, but your mind, heart, and soul. I wonder sometimes who would I have been had it not been for this disease. Would I still be a compassionate person?  Would I still be a person who does kind deeds?  Would I be someone I can be proud of? I may not be proud of what Ankylosing Spondylitis has done to my body, but I am proud of the person I am. I am thankful that Ankylosing Spondylitis has taught me to sing in the rain.

I may not be able to stand tall,  but I will stand beside you.

I may not always be able to spend time with you,  but there will never be a time you aren’t inside my heart.

Today when I signed on face book there was a link to a story. I clicked on it and thought this is what the topic of weathering the storm is really about.  I struggled to write this blog and never needed to, it had already been written for me.

Nick Vujicic talks about going through the storms in life. The thing that touched me the most is when he speaks about not having hands to hold his wife’s hand, but says when the times comes he will hold her heart.

http://www.youtube.com/watch?v=Gc4HGQHgeFE&feature=player_embedded

http://www.lifewithoutlimbs.org/

Life is about living it, to the best ability that you are able to. It’s  about getting through the storms of life the best way you can.

It’s about looking back one day on your past, realizing just how strong you really are,  by seeing what you had the strength to get through.

It is about weathering the storm called life waiting for that rainbow to come through once again.

Weathering the storm for me is about having the courage to get through any challenge life brings my way and having the faith in my self to do so and the hope that I will.

My friend,  it is not what they take away from you that counts;

it is what you do with what you have left.  By Hubert Humphrey

If you think you are beaten, you are,

If you think you dare not, you don’t.

If you like to win, but you think you can’t, It is almost certain you won’t.

If you think you’ll lose, you’re lost,

For out in the world we find, Success begins with a fellow’s will.

It’s all in the state of mind.

If you think you are outclassed, you are,

You’ve got to think high to rise,

You’ve got to be sure of yourself before You can ever win a prize.

Life’s battles don’t always go To the stronger or faster man.

But sooner or later the man who wins, Is the man who thinks he can.

~ C. W. Longenecker ~

This blog is dedicated to me for weathering the storm of challenging topics.

This blog is written in honor of my daughter, Christy. I pray one day while looking in the mirror, she will see herself through my eyes.

Have You Ever Seen The Rain

http://www.youtube.com/watch?v=Gu2pVPWGYMQ

Weathering My Storm By Meloni

Posted in The Blogs By Meloni, Week 06: Weathering The Storm on August 15, 2011 by Cookie Has A.S.

Hurricanes, earthquakes— well, not exactly it’s called ankylosing spondylitis! That’s my storm I’m living in and through. While storms generally come and go they sometimes leave a “mess” that can be cleaned, my storm has made landfall and keeps churning! If only it would pass and let me clean up the mess. I’m worried that the mess it’s continually spawning on my body will leave severe long term damage for my future. Those of us who have ankylosing spondylitis only wish there were planes flying in to evaluate this disease—knowledge and research is sooo needed. Even finding doctors who “truly” know AS can be hard! There aren’t many medications for those to weather this storm! We don’t want to “mask” it! We want to defeat it! We can’t even prepare for this storm that’s causing havoc on our bodies. There’s no evacuation and boarding up…it’s every minute of EVERY day that we stand in 200 mph winds holding on to not be swept away. Storms are terrible to go through…but you can see the light at the end of the tunnel…the sun shine will break through the clouds, the skies will clear and the clean-up can begin, even if it’s a painful clean-up, it can begin and there is an end. Not true for those of us who suffer from a chronic disease…there is NO end. There is NO break in the clouds and there is NO clean-up. There is only minute by minute struggles. Sometimes it’s hard to deal with a never ending storm. Sometimes the disease can start to take over, but it’s times like that we must remember that it’s our body. It’s our life. The disease does NOT own us…we own the disease! I encourage you to take control. STAND TALL and FIGHT! AS has my body, but it will NOT have me!