Hello world!

Hello world, I’d like to introduce myself, my name is Michele otherwise known as Katasee in the electronic world. I’m a 47 year old woman who took care of everyone else but herself for the majority of her life. I’m a mother of seven, well not technically, but I did raise seven boys, three of my own and four foster sons for the past 30 years. I’m what most of you would call a caregiver… either that or really stupid.

Over the years I’ve worked as a candy striper, cashier, a volunteer, a liquor store manager, full charge bookkeeper at a cemetery of all places, as an accountant and comptroller for a large manufacturing company and then leaving it all behind in the name of saving my marriage to become a houseparent in a group home in Anchorage Alaska where I worked with my husband every day for the past 25 years.

Most recently my job title changed to a Home Alliance Coordinator (foster mom with a fancy name) taking care of developmentally disabled young adults in my home since they were children for the past 25 years. During that time we cared for over twenty two different individuals that lived in our home 24/7, 365 days a year. I can’t even tell you how many times I’ve been called an angel sent from the heavens above to do a job no one wanted or could do their self. I’ve also been told how stupid I was for this chosen line of work. It is definitely not for the faint at heart that’s for sure. However it has been very rewarding for the most part, but like everyone else, there were times when even I questioned my own sanity.

Ten years ago was one of those times… even though I thought I had it all, feeling on top of my world, doing what I wanted, playing tennis every day, being a stay at home mom and wife and overcoming challenge after challenge, overcoming the unexpected. I had risen again from a fate that was placed upon me, beating the odds … the problem is I took everything for granted, including my health, my freedom, my physical appearance, my children, my family, my home, my job and my health care insurance.

Here I was being a good wife raising my children, doing a noble job I thought. I loved most days and was having the time of my life… then one cold September morning while doing my daily routine everything changed. It was as though spirit was saying… “No this is not the life you were supposed to live, you still have many lessons to learn…”.  I was faced with a new set of circumstances I wouldn’t bestow on anyone. I was severally beaten up one morning and held hostage for over an hour by one of my foster sons whom I had taken care of as one of my own for the past 15 years, right there in our home after my husband had left to take our children to school. After enduring a two hour torturous event… my life would change forever.

After months of dealing with severe pain, black and blue eyes and bruises over my entire body and having people look at my husband as though he was some kind of monster, like he was a wife beater or something… which couldn’t be further from the truth. I also had to deal with having a cast on both my arms, something I don’t wish on any woman… try having your period and needing your husband to change your feminine napkins or tampons, or bath you,dress you and put on your bra…etc…Talk about embarrassing.

I endured months of painful physical therapy from the soft tissue damage done to my head and neck and shoulder,  a cracked vertebra in my neck, the onset of migraines and radiating pain down my right arm. If that weren’t enough, I also had to deal with the pain of my eight fingernails growing back after they were ripped off one by one while being held down with two broken arms. On top of all that I now had to deal with the onset of  PTSD, and the diagnosis of sever Crohn’s Disease and fibromyalgia brought on by the tremendous amount of stress my body had endured…. I spiraled into a world of depression, self doubt, and fear. .. I did not wish my life on anyone, nor did I want anyone to deal with my pain. So I retreated further into my own black hole at one point telling my doctor I could no longer be held responsible for my own actions… Evidently not all medications are meant to make you better, some have such drastic and severe side effects that it’s worse than the disease or ailment that it is treating…. Prednisone is now a dirty word in my home.

I have always been able to deal with all my life issues… everything that God threw at me… even when it was so bad no one would ever expect anything good to come of it… I’ve overcome sexual abuse as a young child, sexual promiscuity and food addiction in my late teen’s early adult hood… I even overcame the affair my husband had with my best friend on my 27th birthday…My entire life, sexuality, and reason to live came into question, but I prevailed…I survived. Everything I have experienced I’d like to believe made me stronger, made me who I am today… made me learn to love life and not take everything for granted.

I never knew that  by engaging myself in extreme exercising regimes and sexual promiscuity, in reality I was trying to fulfill the empty void that lingered deep within my body, mind and soul from my life experiences. I’ve always managed to come out OK, seemingly unscarred no matter how bad things got. My husband and I always managed to stick together, no matter what was thrown our way or how bad things got,  we’ve always been able to work through everything. Not an easy feat in today’s world.

But this time it was different. I couldn’t pull myself out of the darkness. I finally sought counseling after living a year in my own hell. I learned a lot about myself while in counseling. I learned that I’m a woman who never knew what my passion was until someone asked me to write my story. A story so profoundly emotional, riveting and unbelievable… that even I had a hard time believing that it was my life we were talking about or I was writing about.

Filled with perseverance and the will to never give up… I found that writing helped to quiet my mind, release the built up energy, and free my soul from anger, guilt and the compulsive actions I once took in order to numb my mind and body. Finding a new love I emerged myself into the writing world… learning everything I could, going to conferences, seminars and taking classes in between bouts of being on medication trials, 18 blood transfusions,  several hospitalizations, and constantly being sick.

It’s been ten years since I got beat up that cold September day…ten years since I started to get sick… As my anniversary date quickly approached this year…I found myself still trying to figure out who I am… still trying to not define myself by the things that have happened to me during the past 47 years of my life or by my newly named disease. No matter what I do, I don’t seem to get better only worse with the debilitating migraines, fibromyalgia, constant pain, and other side effects. The only thing that does seem to help is my writing and getting lost in the words along with helping others find their passion by teaching the Artist’s Way… it has helped me keep my mind in a positive light, to see what I have instead of what I don’t. It helps me look forward to a future filled with love and passion instead of pain and misery.

I refuse to define myself as a victim of life or circumstances, or by a disease called Crohn’s, even though it consumes most of my life and affects every aspect of it…I will not let it or its side effects define me. Looking at me you normally can’t tell I’m sick. I do whatever I can to hide it by isolating myself. Call it pride or dignity… I try to live each day as it comes, fill my life with positive people, positive books, and positive thoughts… even when that is sometimes hard to do. I depend on the laws of attraction to bring good into my life….to see the positives, to cherish the gifts brought to me each and every day by the universe.

My whole life has revolved around the wants, desires, and expectations of others… I have based my whole life on fear… Fear of being judged, fear of failing, fear of being overweight, fear of being alone, fear of not feeling good, fear of not getting to a toilet, fear of not having medical insurance, a home to live in, or living a life filled with poverty … Well, not any more… today I take a stance, today I do what I want, what feels good to me, what’s good for me… Today I find my own voice, today I vow to live my life instead of sucmming to it, knowing I have a choice, will and desire to succeed at healing and at living.

So there you have it, me in a nutshell. Love me, hate me, but never leave me… you never know what I’ll say or do next…Maybe I’ll tell you about my move from Alaska to Hawaii to Washington… or maybe my views on our health care system or lack there of,  or the insurance industry and how their only concern is their bottom line… not you or your issues. Or how Social Security denies 93% of all legitimate medical claims,   or how about living with Crohn’s and how one of my medications cost’s over $30,000.00 for each treatment every six to eight weeks…My life is a constant battle between fighting with insurance companies, Social Security, dealing with attorneys, doctors, case managers, social-workers and counselors all in the name of trying to heal my broken body while fighting for my rights and preserving my dignity.

I would love to hear from you, please if you have any stories, insights, or helpful tips, medications successes or failures, or information about Crohn’s, migraines, or fibromyalgia  to share… please do so… Your thoughts, ideas and comments are welcome! I hope that this can be a support system for you, a place where you can feel safe and heard. A place where we can learn from each other, sharing resources and helping others understand the trials and tribulations of living a life with a chronic disease.

May each day be filled with Peace, Love and Light!

Michele

What The Bleep Is Crohn’s Disease?

What The Bleep Is Crohn’s Disease?

The CCFA describes it as: A chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon.

Named after Dr. Burrill B. Crohn. In 1932, Dr. Crohn and two colleagues, Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, published a paper describing what is known today as Crohn’s disease. Crohn’s is related to ulcerative colitis which is also called inflammatory bowel disease (IBD).

You can find all the information you ever or never wanted to know about this disease that effects more people today than ever before at:  www.ccfa.org/info/about/crohns

But what you can’t find there is how it really affects your life when you’ve been graced by the hand of God to experience the humiliating, belittling, and degenerative disease that I along with many others have (over a million Americans to be exact).

Sure I can find all the technical and clinical explanations to make my face turn purple… but what I can’t seem to find is a support system that is truthful, and brutally honest, who truly understands what it’s like to live each and every day with a disease that is so temperamental, and constantly changing its rules…“I just wish there was someone, somewhere who could give me truthful and honest answer’s…”

OMG…. You’re thinking… I know her… is it contagious…  You’ll be happy to know it’s NOT…!

Is it something I would wish on my worst enemies (not that I have any)…  “No!  I wouldn’t even wish it on them.

Am I bitter for having the disease… some days! But mostly I try to stay positive, and know that someday there will be a cure, or relief, or that it will go into remission, or just plain disappear.

Do I blame God or my Mother or the generations before me in my family tree…?   The answer is “No!”   Even though they say it is hereditary.  Yet no one will admit to having it… it’s not one of those diseases that you go out and brag about or even admit to your best friend.  I know I’ve tried to hide it ever since becoming ill in 2000. I never really had any symptoms except maybe once when I was 13 and was hospitalized for a week for what they ended up calling nerves or attention getting… meaning they had no clue why I was doubling over in excruciating pain.

Is it easy to talk or write about…? That’s a joke!  Who wants to hear about how I barely made it to the toilet, or how I can’t go anywhere until I know I’ve cleaned my system out. Or how I can’t eat anything in the morning or until I know exactly where the next restroom will be, which is why my doctor said I eat like a sumo wrestler… consuming the bulk of their calories at night so they can pack on the pounds….and I wonder why I’m so fat.

Or who wants to hear why I can’t go to my friend’s wedding or birthday party or events because I don’t know where the next restroom will be or if I’ll be able to make it through the ceremony without having to run.  Do you think they want to hear how I can’t be in their wedding or plan their wedding shower for fear that I never know when I’ll have my next attack… can you imagine standing up at the altar for an hour long wedding ceremony and having an overwhelming feeling that you’re going to explode right there…right then, as the sweat beads up on my forehead, my body tightens,  doing whatever I can to not have an embarrassing moment…  So naturally I gracefully decline…even though I know it breaks their heart… how could I be so cold… what kind of friend am I anyway?  If they only knew how bad it makes me feel… how truly embarrassed I am, how sick it makes me that I can’t be normal like them.

Another issue I have is finding a clean bathroom. When I lived in Anchorage I had the state, yes… the state mapped out… I knew exactly where every bathroom was, how long it took me to get there, how close it was to the front door from the parking lot, and if it was clean… Not all bathrooms are equal… Note to anyone traveling to Alaska…. Stay away from the Mapco on Northern Lights and the Seward highway… my least favorite can of them all….

I use to joke that I could write a book purely on bathrooms, restroom, can’s, shitter’s, loo’s, Nettie’s, Privy or washrooms… Whatever name you want to call it…  Bathrooms are actually quite interesting… having spent the past 10 years in them more frequently then I’d like to admit. Can you imagine having to utilize a toilet like in parts of Europe or Asia… having to squat while having an explosive episode… not only would I be wearing it… so would the person next to me…. I don’t think I’ll be going there anytime soon; not to mention the 12 to 18 hour plane ride over there… I’m lucky I made it the 6 hours from Hawaii to the mainland.  And that’s only after I’ve taken eight to ten Imodium’s first, my new wonder drug.   I knew I should have bought stock in it’s maker… I guess it’s not to late… with one million Americans suffering from uncontrolled bouts of diarrhea…. McNeil might be a good one to invest in.

Why is Crohns so bad your thinking…? Hell with Imodium to control it…  I should be able to do just about anything?  Wrong! Taking too much or not enough Imodium is a fine line… Not enough…there are still accidents…  Too much… well you get the idea… either way I’m still miserable!  Not only do people with Crohn’s have to deal with the constant bouts of diarrhea… there I said it! They also have to worry about getting infections. Crohns disease has an abnormal response by the body’s immune system. The immune system is composed of various cells and proteins. Normally, these protect the body from infection. In people with Crohn’s disease, the immune system reacts inappropriately.  Therefore people like me get a lot sicker than your average Joe or Michele.  Am I losing you yet?

Researchers believe that the immune system mistakes microbes, such as bacteria that is normally found in the intestines, for foreign or invading substances (i.e.: food!), and launches an attack. In the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury (holes in the stomach lining also called fistulas). When this happens, the patient experiences the symptoms of IBD, in other words excruciating pain, embarrassing gas, bloating, and quick trips to the nearest restroom.

Although Crohn’s disease most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine (the colon), it may also involve any part of the GI tract, and I do mean any part being the key words here!  If any of you have ever had let’s say a canker sore in your mouth or let’s say a sore throat… you all know how bad that feels, how much pain you’re in, and what little can be done to ease the pain… Well, what if your sore throat or canker sore was not just localized, but went throughout your whole system… Yes, you’re getting the picture… from your mouth all the way down to your anus (asshole.) Kind of gives pain a new meaning doesn’t it?

The only way I know how to accurately describe how I feel 90% of the time is like… having battery acid poured down my throat… feeling it move though my intestinal track… settling in areas like my stomach, and ileum… I never even knew where my ileum was until they told me they were going to have to take it out, but that’s a whole other story…  To continue on… the acid moves through my colon…where I get so bloated from all the narrowing area of built up scar tissue…as it  passes through my colon, coming out my ass burning holes its entire way though.

I know some people who come out of a restroom…feel actually rested, relieved, and refreshed… which is where the term restroom originated from. But not I or anyone else with Crohn’s… Not only do I fear having to go in… but I never know how I’m going to feel coming out… Whether it’s going to be one of those times I’m praying to God to just take me home, or I’m sitting quietly hoping no one is paying attention to how long I’ve been sitting there, some times I’m in there for up to an hour trying to go, or cleaning myself up. God forbid I have to go to a public restroom,  screaming in pain tends to make people uncomfortable or scarred or on occasion laugh.  Knowing in advance that I’m most likely going to be making unpleasing noises, even though I know the person sitting next to me can’t see me, I’m still turning red out of embarrassment.  Either way which ever bathroom I find myself in I’m usually drenched from sweat… crying, and unable to walk until the cocaine cream sets in and numbs my bottom side.  … sometimes I apologize as I’m running in, trying to get my pants down and my underwear off and out of the minefield range before the explosion take place… I can’t even tell you how many of my underwear have ended up in the depths of the garbage can buried deep. The worst part is when you hear the giggles next door or others fleeing as they’re laughing on their way out, normally the young girls or groups of ladies… Hopefully they will never experience the the humiliation I do on a daily basis. What’s worse is when you know the people, or when their your co-workers, or people you see on a daily basis. When they see you coming they run or avoid you at all costs.

I can never quite understand why when taking a shit which everyone has to do daily is such a funny and laughable moment.  But I’m sure you feel like I feel… embarrassed if we fart out loud, let one slip, or have one of those inner toilet explosions which somehow seem amplified.  I’ve gotten pretty good at going in-between flushes… to lighten the sound effects.  I don’t dare let one rip without being close to a restroom… I never know what’s coming out whether It’s a little gas, or a dark chocolate surprise… I’m the only adult I know who carries wet wipes with her at all times… and it’s been years since I’ve had a baby around.

I can’t tell you how many times I’ve heard someone on the other side of the stall wall having a similar situation… I want to tell them it’s OK, I understand… go ahead let it rip! Yet I say nothing… I definitely don’t laugh, giggle, or run out plugging my nose.  And it’s not even the little girls doing the giggling… it’s mostly the young women who are there with their girlfriends… You know the ones that think their shit don’t stink… or they would never do something like that… Wait until Crohn’s sets into their body… only then will they know how we feel.

So there you have it… my definition of Crohn’s… I’m hoping that I can help lighten the mood, help others to understand how we feel, and what living with Crohn’s is like. I hope this will be a safe place to share your stories, ask questions, and be a sounding board for others who are experiencing the same un-chosen lifestyle of living with Crohn’s disease.  We are not some leper who needs to be shunned… We are just like the rest of you, we all have to shit… some just more than others. So the next time you hear someone next to you having a rough time…maybe you could offer a little compassion, a smile, or think about the time you had diarrhea…or when it will happen next, believe me… you too will have it sometime or another, it’s just a matter of when.

Here’s a little poem I wrote while sitting in my office… that’s what I call my bathroom, it’s better then calling it the shitter,can or restroom … besides I’ve had more creative ideas while spending hours upon hours on the worlds most uncomfortable hard seat… maybe some of you can relate…

Make Way

Running,

Holding my breath,

Try to think of something else.

Get out of my way!

Please God, make them move.

I can’t hold it.

Just a few more feet,

You can do it.

Your there, your safe,

Empty.

No embarrassing moments today.

Breathe!

Next Entry I’ll talk about medications…and how I cope…or hope! Please if you have any stories, insights, or helpful tips, medications successes or failures, or information about Crohn’s to share… please do so…

Your thoughts, ideas and comments are always welcome without judgment! If you don’t have anything nice to say or share… then take my grandma’s advise… Don’t.

Peace, Love and light,

Michele

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