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Posted on 3. May 2012

The Power of Shared Experience

By Tammie Allegro

When I lost my mother eight years ago, I kept asking myself, "Why?" I knew better than to ask, "Why me?" That question was more about why anyone should have to suffer such a major tragedy in life. In my lifetime, I have lost a lot of really important people, but nothing compared with the loss of my mother. Her loss took me to a really dark and scary place for quite a while. I thought my universe was going to end. I couldn't imagine a time in my life when I would ever be able to enjoy anything. I was sure the heartbreak was going to prevent me from raising my children. How could I raise children with that anguish? But, with the love and support of family and friends and my own personal faith, I got through it. I found out that I was so much stronger than I had ever realized. The lessons learned during this time in my life fuel my resolve today.

Over the years, I have had several friends who have suffered similar losses. Most recently, my best friend lost her mother. She was under the care of hospice just like my mom, and I watched her struggle through many of the same challenges I experienced. I noticed that she would frequently lean on me and ask for advice, even though she had plenty of people offering her guidance. I quickly realized that she knew I understood what she was going through on a level that not many others could. I had words of wisdom to offer because I genuinely felt what she was feeling and knew what it would take for her to get through it.

Similar to a death in the family, being diagnosed with a chronic illness is life-altering. There is the feeling of being punched in the gut - knowing that you have to find a way to get through it, and not being sure what you are capable of. Typically, feelings of grief take over. First is usually denial, followed by fear and, eventually, hopeful acceptance. And like any loss, there is comfort in knowing you are not going through it alone. Somehow, you want people to know what you are going through, but you don't want them to have to suffer the same fate. Knowledge and personal experience can ease a lot of fear when shared. There is comfort in knowing that someone has survived and, better yet, thrived after a diagnosis. It gives you tremendous hope and courage that it is possible to do the same.

"Everything in life happens for a reason" was a statement I used to really dislike, But now I think there may be some truth in it. Sometimes the reasons we seek aren't revealed to us for a very long time. Often we have to suffer through many struggles before we gain understanding and perspective. For me, sharing what I learned from the passing of my mother has allowed me to honor her memory and make losing her a little easier to bear. This doesn't mean that I can stop someone else from hurting, but I can offer some encouragement and let them know that what they are going through is survivable.

Having places like Facebook and the IG Living blog provides great outlets for sharing experiences. I don't just share my experiences with friends. I share with my church congregation, as well as the readers here. I learn just as much from hearing about the experiences of our readers - so many have lived with chronic illness for years and have managed to accomplish great things.

The fact that you are reading this blog means you have either been diagnosed with a chronic illness or you are caring for someone who has. Either way, you have experiences that are unique and yet similar enough that they create a sense of community with others on a similar journey. How do you draw comfort from others, and also encourage those around you with your own life experiences?


Comments (1) -

Julianne Leigh
10:00 AM on Wednesday, July 24, 2013

Having been diagnosed for almost a year now, come Oct. 22nd will be a year since finding out I have the chronic illness of Inclusion Body Myositis (IBM).

Somewhere inside I knew deep down there was something wrong with me, that is why I put off going and seeking out Dr.s sooner to find out what was going on with the falling and tripping all the time!!

Looking back, it had been coming on since about "02 or "03..... I also had Osteo Arthritis too! Started with several trips and falls, never paying attention that it was anything more than that a fall. Besides that I had Osteo arthritis and that weakens the joints.

About 2004 came around and I remember once running up the front office building stairs just outside the building that morning like I normally did with a plate of cookies in tow! Except I fell and got hurt a little, surprised by how my leg just gave out under me, couldn't figure out why?

2005 was filled with many more falls and plenty of tripping incidents! Mostly big bruises and skinned knees a couple of times my face wanted to get in on the action too!! LOL!! Smile

By 2007 if I fell to the ground I could no longer get myself up off the ground! That proved to be a funny episode out at Santa Monica Beach on a July 4, 2007 celebration! Stacie went out way out swimming and jumping with the waves,,, I knew I would not be able to go out very far, cause my legs were quite weak and the waves I thought would knock me down! Well little did I know that was just about to happen when  I was coming in from being out too far and said Stacie come help, the surf is getting rough, I don't think I can make it in by myself. I turned around and down I went and got pelted with about two feet of water over me, I landed on my back side like a bug on her back and I could not get up on my own. Stacie took one look at me and just started cracking up!!! Finally she made it over to me and was helping me get up and along comes another wave and practically drowns me, oh sure, she's laughing hysterically, I just trying to catch my breath! And then there were all these people laughing at me on the edge of the beach just laughing no one helping me!! Looking back it must have been hilarious!!

Come 2010 in May one morning at work I was alone in the warehouse and was loading our cart with paper reams on it, it was a little after 7:00 a.m. I reached to grab the box of paper holding onto the plastic strapping with one hand and the box with the other and bam, down I went, My back and head took the brunt of my fall! Oh I knew this was not gonna be good!!

Now knowing in my head that I cannot get up, I reached back to my head to see if I was bleeding , no blood but instant huge bump, I slowly turned over to my stomach and had to slither to the office to get to the phone to call for help!! I was so scared my head hurt so bad and I knew I got hurt!  Called the guy in. The mail room he got ahold of security and called an ambulance, I went to the hospital! That was the first concussion I ever had! But would not remain my last!

My first day at Thermo King a new site I had transferred to within my company, I was getting ready for work that sunny beautiful morning, and my legs crumpled out from under me. I slid down the side of the door frame as I fell and landed with the left leg kinda twisted and it hurt kinda a bit!!! Hahaha!! (Ouch)!! being this was my first day I knew I had no time to go to the hospital and check if anything was broken,  had to scotch all the way to the outside deck stairs to turn around on the stairs and at that point Stacie could help me up the rest of the way! Oh man was, it hard to walk, I was in so much pain, I figured I must have pulled a muscle or some ligaments!

When I came home from work I just used ice on it every 1/2 hr. till bed! eventually it would be fine. but I had a checkup with my Orthopedic Surgeon, we were meeting regarding me finally getting my Total Hip Replacement done. we set the date for Sept. 30, 2011. It all wen well. went to a transitional care unit to receive some OT/PT before returning home! I would also be having home  OT/PT come twice a week as well. By December I went back to work pastime at first then eventually resumed full time status!!! Winter wasn't too bad that year so I lucked out!!

But this is where I knew something else was terribly wrong with me and just did not want to accept it, but could also at the same time not convince my family that I wasn't anything but lazy! Shit, I used to get so frustrated!!! The effort that it took for me to just walk into my building at work was a long walk!

By May 2012 I ended up being referred to get MRI's of the Brain and spine, and to also see a Neurologist. Dr. Dahlquist. My first appt. with him was in June, was sent for a battery of 20 + blood tests!!! nice the results were back he would call me to come in again!

I went back in August, and from based on the readings, he told me that I was very sick, I said ya I know, he said no Julie u are very very sick!!!! I had my son Mike with me. he also said you are pretty stubborn too arn't you? Because I had not come sooner to see what this was and just kept plugging away! He and my son left the room for a brief few moments while I could grasp this!

He wanted me to go to the U of M Fairview for some additional testing and a Muscle Biopsy to confirm whether or not this was either Polymyositis or IBM a more severe non curable form! Thus, the muscle biopsy!

It was set Oct. 8, 2012 I was taken to the hospital for my additional tests. n,y to find out that I would be admitted to have surgery the Muscle Biopsy and other tests and scans, etc,.

My Birthday gift was the day of the biopsy scheduled that evening! Yea, me!!! The results would not be back until a couple of weeks!!

The results were positive for the IBM!!! I knew it!! All the falls and breaks I had, broken nose 3 places, two broken fibulas, two concussions, so many bruises, and the pain, it sucks to fall and get hurt!!!

It't July, 2013 and I have not fallen since I came home from the hospital last year!!! Yea, me!!!! Smile I am currently no longer employed as  per my Dr.s, they both said I was just too sick to continue!

But I have taken care of getting through the battle of qualifying for SSDI, it took  five months....Sigh!!! Yôu know, things happening our lives for whatever reasons, they're not to be questioned! Things happen that we cannot or do not plan for... It's not always what your dealt, it's how you deal with it that determines the outcome! While I've had  four or five days of good cries, for the most part I just live, take it day by day!!! And you know something, physically what I have is not the hardest thing to deal with, it is the watching of family watching me go through this and what it does to them! That is what is the hardest! My dad commented one day while visiting me and said I don't know how you do it, sit in bed all day long never leave the house, he said he couldn't do it. I said sometime you do what you have to do and when there are no other options than that is what you got, that is all you can do. And at the time I had no other furniture in my home to sit on, or no wheelchair and no ramp to leave my home, as I can no longer descend the stairs safely!!!

My dad also is a very very negative person to begin with, has suffered with his own depression issues for many years, But he said upon one of his visits he said ya know I ask god why,k why my daughter, I asked him, if I could answer that, I said
You know I'm no more special than the next door neighbor, why not me? I told him that I was glad that it was me rather than my youngest sister who just had her first child!!! Better me than my per sister who has the spirit in her to constantly be on the move always looking for her next journey, how would she have dealt with this!!! Anyways, I'm sure my son wishes it was not me who had this illness!!! He has so many hopes and dreams of his own he wants me to be a part of!

Like when he gets his first song on the radio! Gets a Grammy Nomination! Wins a Grammy!! I know he will get his music out there for all to hear and enjoy!!! Smile SmileAll I know is I'm here now and I intend to do what I can while I can, and when I can no longer, someone will help me. I'm not the same Julie I was 30 yrs. ago, but on the inside I am still the same,just a whole lot more outspoken. I love life and appreciate each and every day!! my favorite thing is sunrises and sunsets and a good meal with family and friends and cruising and my dog Pig, Oh how I love my little Housepig, she is just the most precious little dog ever!!! She helps take care of me!!!

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