Awareness · Depression · Expression · Health · Inspiration · Pain · Personal · Self Harm · Social Media · Truth · Writing

Project Semicolon Founder Dies At 31

*****For me, personally, this has been really hard to hear. And, yes, I know, we weren’t friends or even knew each other at all, but it still makes me emotional. As a teen I battled Depression, Eating Disorders, Suicidal Ideation, Self Harm and other severe things as well. I am now a 22 year old Chronic Illness Blogger who found a way to make it through the toughest years of my life with the one thing I love most in the world-My writing. If you ever need to talk, don’t hesitate to call/text/message me anytime whatsoever. If you need someone, I am here.*****

Amy Bleuel, founder of Project Semicolon, died on March 24 at the age of 31.

A death notice from Pfotenhauer Funeral Homes & Cremation Services in her hometown of Green Bay, Wisconsin, says Bleuel is “at peace in Heaven with her father.”

The cause of her death has not been reported.

Bleuel started Project Semicolon — a movement to help those struggling with depression, addiction, self-injury and suicide — in 2013 after her father committed suicide. Many supporters and followers of the organization have inked themselves with the semicolon symbol in solidarity. Bleuel herself had semicolon tattoos on her left arm (for her dad), the back of her right leg (for her best friend) and one on her left arm (for herself).

“The semicolon was chosen because in literature a semicolon is used when an author chooses to not end a sentence,” Bleuel told PEOPLE in July 2015. “You are the author and the sentence is your life. You are choosing to continue.”

Hundreds of people inspired by Bleuel’s work on behalf of mental health advocacy have taken to social media to express their condolences.

 

 

 

 

The American Foundation for Suicide Prevention released a statement expressing sympathies: “With her prolific semi-colon campaign, she brought real awareness to an issue that is often misunderstood and can be complex in nature. Amy’s life was a testament that one person truly can make a difference. She had a powerful voice that gave others the confidence to speak openly about mental health.”

A service for Bleuel will be held at Pfotenhauer Funeral Home and Cremation Service in Green Bay, Wisconsin, from 9:30 a.m. to 12:00 noon on Saturday, April 1, 2017.

If you or someone you know needs support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741. For more information on Project Semicolon, visit projectsemicolon.com

Awareness · Chronic Illness · Chronic Pain · Endometriosis · Expression · Health · Inspiration · Interstitial Cystitis · Invisible Illness · My Feelings · Pain · Personal · Truth · Writing

The Words We Use

I have been thinking about this for weeks and I need to get it out there. It may not make much sense in some parts, but please bear with me as I write this. This was not easy for me. But I feel like all this needed to be said, despite the judgements I may get from someone reading this. These words are just my opinions, my thoughts, and I apologize in advance if I have offended someone or crossed a line somewhere while writing this. Please let me know what you think, either in the comments or on any of my Social Media Sites

Since being diagnosed with Interstitial Cystitis, Endometriosis and Pelvic Floor along with Depression and Anxiety, I feel like most people have stopped seeing me. They seem to only see the disabled girl with Chronic pain and diseases that have no cure.

When I am introduced to someone new the words and phrases people use to describe me makes me feel small. They make me feel like I am not doing enough to “make myself better.” When they talk about me, they only seem to see the endless stream of tests, doctors, surgeries. They have stopped seeing me and now see me as “The girl with Chronic Pain.”And it makes me feel like I need to push myself harder when in reality I already push myself beyond my limit every single day just to try and have a sliver of the life I once had.

My illnesses are not usually fatal and sadly I’ve come to realize that if you are not in danger of actually dying then people don’t feel the need to help you or use their own energy and resources to help you. This may sound harsh, but I am finding it to be more and more true. When most people hear that someone has a “Chronic Illness” they know that it is most likely going to “drag on” forever so there is no reason to try and help you if you are going to live with your disease forever if there is no cure.

People with chronic illness face a lifetime of pain, exhaustion, and disability. A lifetime of people telling them to get over it, of people telling them they they are too depressing to be around, a lifetime of failing to meet everyone’s expectations,  but that is not enough to attract anyone’s attention. Nobody would ever tell a cancer patient to just get over it and stop dwelling on their illness, but people with chronic illness hear this practically every day and that is ridiculous. It is also very hurtful to hear and some of us hear it over and over from our family and friends who cannot understand how we can be fine one minute and then the next we are curled up on the floor or the couch in pain.

I know for s0me of the best people I have ever met, those who have struggled with not having a diagnosis for years, finally having a name for their symptoms and illnesses is incredibly validating.

Once you finally have a name to what is wrong with you, it makes it much easier to treat it, or at least manage your symptoms and pain. But along with the names of your illnesses and symptoms also comes judgements; at least it does in my life. Some people research your illness and learn at least a little about it so they can help you deal with the emotional part of it and be there for you but then there are those who search google and find places that, for a one time payment can “cure” your disease, or this new medicine that is on the market that has amazing reviews online for being natural or articles by people that have “cured themselves completely using ____” or how thinking positive and talking about your feelings you can convince your body that you don’t have an illness and can therefor “cure” yourself. But then they get upset when you don’t read all the “research” they did or do everything they think you should be doing because the internet says it will help you.

I have only had my illnesses for a little over four years, but in that time I have come across so many others in support groups and illness forums that sometimes say they wish they could have a disease like cancer because people with cancer get support from family, friends, even sometimes people they just met. People seem to care more about cancer and they don’t care much if at all about chronic illness because it will go on forever. It’s Chronic. Most Chronic Illnesses have no cures, only treatments so some people will just assume it will be the same thing every day so why bother helping if it is going to be a never ending process?

For me there are not any words on the planet that adequately explain how difficult it is to be disabled by an illness that no one believes is real. For people to not understand how you can look fine on the outside and be smiling but be hurting on the inside. For people to understand how you can do a certain amount of things one day then the next have no energy to do anything, sometimes even getting out of bed is a challenge. For people who can’t understand how you can be fine one minute then the next you are in severe pain. Not to mention the insurance companies will pay for cancer treatment, they won’t pay for most chronic illness treatments or medications. Most of us have to come up with the money out of our own pocket to pay for a medication that may help a tiny bit or not at all.

We are people first. We are still human beings who have feelings and hate that some people have stopped seeing us as a person, but now see us as our illness or our symptoms. It is very hurtful for many of us. We just want some understanding. Some support to know we are not alone. I know my expectations of family and friends can just be silly, but is it really too much to ask for some support even if they don’t believe that I am sick? I could really use some support as I am going through this hard part in my life. I wouldn’t wish my life on anyone, and I do everything I can to be supportive of family and friends even if I don’t agree with their lifestyles or choices. Is it so hard to expect them to extend the same courtesy to me?

The words people use to describe others are important. Based on descriptions and words from other people, when you meet someone new you usually have already formed an opinion based on what others have told you about them. For those of us with Chronic Illnesses, most people automatically come to the conclusion that we are different, that we will never be like them because we have a different life then they do. Most people assume that we will never want to hang out because we hurt all the time. So they stop asking us to go out places. Stop calling. Because in their mind we are disabled, therefore we spend all our time sleeping or trying to feel better. They have already made up their minds about us based on one word. Disabled.

They fail to see how hard we try to still have even a tiny fraction of the life we had before our diagnosis and symptoms started coming around uninvited.When they hear the word disabled most people assume that we sleep all day, don’t get anything done, never go anywhere. They never bother to ask us what our days are like, because what they know about disabilities is what the internet has made us seem like to the outside world. Lazy. Selfish. Attention seeking. Pain pill addicts.

It never occurs to them that if they bothered to even look up our illnesses that we can still do a lot, just not all at once.  Hearing the word disabled used to describe someone, most people immediately think of someone in a wheelchair or someone with severe limitations in their movement and their lives. When they see someone like us who looks fine on the outside but still ‘claims’ to be disabled, they get this look on their face like we are horrible people because we are ‘lying’ about our illness. They don’t understand how can we be sick if we look fine on the outside. Society has made us ‘disabled people’ seem like we are just wanting money and free medical care and pain medications from the government. And its rare that someone actually tries to form their own opinion of us instead of believing the internet or the opinions of others that claim they know more about our diseases than they do. They believe the internet or other people because it is easier than getting to know us and trying to form their own opinions of us. It is easier to just believe what they are told rather than having to spend time with us when they ‘have better things to do’

We fight every day just to get out of bed while they take the little things for granted. Most people think that because life is the way it is for them that it will always stay that way. They never think of what would happen if all the things they were used to suddenly weren’t around anymore. They are used to going places all the time, feeling healthy, being able to go on long road trips, go to the bars, have a ‘normal life’ Have a relationship. Not have to worry about each and every minute of every day and how it will affect you and your ability to do even the simple things that they do without even thinking of it as a challenge. For them, that is just the way it is for them. They never think life would be any different.

What would they do if one day they woke up and they were suddenly sick with a chronic illness and their whole lives were about to change forever? What would they think if one day they suddenly could no longer go places without planning for every minute of it. Of taking many medications. Of feeling exhausted 24/7. Of needing a wheelchair. Of needing support to walk up a flight of stairs. Of not being able to do even the simplest of things they used to do before they got sick?

They judge us each and every day. With their words. The looks. The whispers and the giggles as we struggle to walk upright or walk funny due to our pain. If they woke up one day and their whole life had changed, would they finally see that we are people too? We are not just The Disabled People.

We have feelings. We matter too. Just because we are different it should not make us ‘outcasts’ in the eyes of someone ‘normal’

We fight every single day just to get out of bed and put on a brave face. We do the best we can with what we have. There are people in my life that do not think of the hurtfulness of the words they use to describe me. I am not just the disabled girl they know. I am a person first. My illness is not who I am. It is a part of me, but it does not mean that I have to let it control me.

My name is Karley and I suffer from Chronic Illnesses. I am a person first and foremost. I am not the disabled girl. I have a name and I am more than my symptoms and illnesses. I refuse to let my illness control my life and how people see me. If they cannot see past the disabled parts of me, they have to right to be in my life anymore. I am a person. I have feelings. My illness is not who I am. I am stronger than my disabilities. I am doing the very best that I can with what I’ve got.

Instead of seeing me as disabled or having chronic illnesses that have no cure, try using my name instead. I am a human being. I have a name. or have you spent all of your time being so focused on the labels that surround me and my life that you don’t even know my name?

 

Chronic Illness · Chronic Pain · Depression · Endometriosis · Expression · Health · Invisible Illness · Pain · Social Media Sites · Truth · Writing

The Bittersweet Moment Of Finally Having A Diagnosis

I have been thinking about my own bittersweet moment for weeks and I decided to see if others would want to share their stories too and after all the waiting, here it is!!

I asked others what their bittersweet moments were and after getting their permission to share on my blog, here is what some of them had to say.

Kami: Finally reaching a diagnosis after weeks, months, or years of struggle brings a healthy dose of mixed emotions. I remember the moments of the two most critical diagnoses I received very well. How much relief I felt, yet how very real the unknowns were with each disease.

There’s a sense of “what now” that’s felt just as strongly as “finally, an answer.” At last we’ve been assured by a medical professional that we were right: it’s not all in our heads. But the reality we must now accept requires us to come to terms with a new normal. And to make decisions that can be unnerving regarding treatment and care.

Receiving my diagnoses gave me direction and even some hope that I wouldn’t have to wander the sick life aimlessly. It sparked courage to be my own advocate. To be aware of my body and health and listen to it when something just isn’t working.

We ride the waves of many emotions in this life of illness, but the pivotal moment of being diagnosed is one that is not forgotten. It takes so much strength to soak in all new information, make an informed decision for treatment, and continue living in spite of another label thrown into our health files.

But here we are, still living. We’re breathing, fighting for wellness, navigating each hard day the best we can. Sitting with the tension of two very different realities: relief and the unknown. And that, my friends, takes a boatload of courage.

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Jessica: I will never forget the day I received my chronic illness diagnosis and I feel many people with diagnosis’ feel the same. It is a day that is stuck in our minds; a day when a shift occurred in our life. It is a very contradictory day. I was happy, yet sad. Hopeful, yet lost some hope. Let me explain. I was happy to have a diagnosis, yet sad that it was an incurable diagnosis. I was hopeful that with a diagnosis I may get better with treatment, yet lost hope that I would ever feel my old “normal” again. It is an incredibly emotional experience. For me, it began the cycles of grief of my old life, and the life I thought I would have one day. To anyone who has recently received their diagnosis, while you may be feeling lost and scared, just know the emotions calm down and most are able to find their new “normal.” There are a plethora of support groups on social media and I strongly encourage you to find one that fits you. Support makes such a difference.

Katie McCabe: I started when I was 15 with emergency knee surgery, a year later I was trying to convince people that I was in pain more than usual all the time. My parents took me to a specialist in another state who diagnosed me with Lupus, Fibromyalgia, and Rheumatoid Arthritis. I had gotten a systemic yeast infection from the antibiotics because of the emergency knee surgery. The systemic yeast infection had caused my autoimmune illnesses. The doctor was able to put all 3 illnesses into remission with a treatment, and this had lasted a few years. Then on May 9, 2008 (I’ll never forget that date or the time, it was at 3:10 pm) I was headed back to my apartment to get the last stuff and move home with my parents for the summer. I was in an automotive accident, I was rear ended… At the time I did not know that moment would be the one to change my life completely. I had a dream of becoming a professional dancer and was in contact with other schools to do so. After the accident it took a year before I was diagnosed with chronic vertigo, doctors were more readily willing to diagnose this than the other issues. It took 2 years after the accident, 8 surgeries to block some nerves due to misfiring, and 4 times of going to different physical therapists before I FINALLY got an answer. The car accident had actually caused me to become slowly paralyzed from the waist down ( I was still able to walk due to the muscle memory and muscle training from dancing for so many years). To be found with the paralysis I went through 5 different doctors to find out why I was falling all the time, it was my neck therapist (for my vertigo) that finally found that I was paralyzed and sent me to a neurosurgeon. I was scheduled for one last surgery to try to get my legs back, a month before the surgery I finally got my first service dog to help me walk since I kept falling and I refused to be put in a wheelchair permanently. After the surgery was over my surgeon came and told me he had to scrape arthritis off my vertebrae to be able to get to them and that he believed that my chronic illnesses were back but he suggested I get tested. With a year recovering from that surgery and finishing up my last semester of college, a year later I had been given some good news. I had gotten my left leg back! The bad news? My right leg got as good as it could get, but was still paralyzed from 4 inches above the knee to all the way down my leg. After that I fought with doctors to get the recommendation to go to a specialist to get re-diagnosed with my chronic illnesses. As of this past year (2016) I got the referral but insurance refused to pay since I am too young. I got pregnant in Oct 2016, and now insurance is covering the blood tests since they are necessary for the pregnancy (sad when it takes that for insurance to cover). My specialist has said that my chronic illnesses have come back since the accident and that the accident caused them to come out of remission…So my final bittersweet moment at this time….It took getting pregnant with my rainbow baby (2 miscarriages in 2015 due to lupus complications) for doctors to finally give me the referrals and diagnosis that I knew I would get. It took all this before about 15 different doctors and specialist to finally get re-diagnosed. My twitter username is Yatarika

Lynn:Setting: a hotel in Phoenix Arizona, after a deposition .. I came back from seeing my ex-monster and his accomplice’s ( his parents) from a deposition regarding child custody of my son. I flopped on a couch unable to move… I thought I had the flu. I had to fly back to NY the next day and was unsure of how I was going to do that considering I could not even lift my arms… and then suddenly my knees started to hurt; especially my right one…  I fought and fought and fought for my son as his biological father was beyond crazy . I know everyone calls their ex’s crazy but mine really was… ( details to follow) I went to my chiropractor when i got home. and then the infectious disease dr. and then 5 alternative doctors and then Lyme specialists and then Rhumotologists, and then acupuncturists, healers , John of God and Anthony William, a psychic medium.. Desperate much? its 15 years later and i live by the spoon theory with ever day, every plan every thought…

Vanessa: My name is Vanessa. I am 29 years old and I used to be a normal woman. Growing up I was relatively healthy. Orange juice always caused problems, but nothing too alarming. Just couldn’t drink it all the time because it caused what felt like uti’s. Aside from that, I had a problem with chronic headaches. My periods were awful- I mean, home in bed in complete misery- awful! I was always told I have the heart of a humming bird (very fast). I had surgery in 2004 for my knee. Some stuff tore and I woke up to my knee all sorts of colors, swollen, and I couldn’t move it at all. Aside from those, I was a normal girl. Nothing kept me off my feet and I was always active. I hated being indoors… not that I liked camping and woodsy stuff… I grew up on an island, so I was a beach girl. Boating and fishing. In 2008 I had two miscarriages. Both almost killed me. But no explanation as to why I was filled with blood clots. 2009 my headaches got much worse. I started blacking out and vomiting with them. One day I fainted and vomited at the same time and my friend convinced me it was time to see a doctor. I can’t remember what led me to a cardiologist, but there I was. At the end of the numerous tests, I was told I have mitral valve prolapse (MVP). Started medicine and that got so much better! In 2010 I had a successful pregnancy and was blessed with my little girl. Only the hours after she was born changed my life. My daughter moved my tailbone so I couldn’t move without help. During the night I buzzed the nurse to ask her to help me, I thought I had urinated on myself. So a nurse came in and when she moved the blankets I was laying in a puddle of blood. She helped me up to the bathroom to clean me up- once I stood I felt horrified. I told her I felt something coming out of me. She started to pull at my underwear and I heard a splat. She immediately told me not to look- which obviously I would look- and there was a “blood clot” the size of a baby. My mother in law still believes it was a baby. But I saw it. It wasn’t. Anyhoo, she helped me to the bathroom and more kept falling out. I started to turn white. She helped me down and instructed me not to move. She came back with a number of nurses who picked me up and put me in the bed. They started pushing on my stomach thinking something was left behind. Then she stated my bladder wasn’t where it was supposed to be. I’m in immense pain at this point and I’m getting weaker faster. So they find my bladder and push it back. I screamed for dear life. That hurt more than delivering my baby. Not long after that I needed two bags of blood. They said I wouldn’t make it out of the hospital without it. Once I was released it was a battle. Pain. I lost weight very quickly. I was at 69 lbs just three months after I had my child. No explanations. No solutions. My doctor was surprised to hear all that happened. He didn’t understand why I needed a blood transfusion, and when I explained what happened he couldn’t find any record of it. He said that putting my bladder back like that was a mistake, it should’ve been done surgically. For two years I bounced from doctor to doctor. In and out of the er. Voiding pure blood. Pain so bad I physically couldn’t stand. I slept on the toilet. Voiding every few minutes. Just drizzles. Then just blood. I was ridiculed by doctors and er staff. I was told I was imagining things. Exaggerating. I knew I wasn’t. And there I was, with a new born. I fell into such a deep depression but still tried to fight because my baby needed me. Her father distanced himself from me because how could I be in so much pain, but there’s no medical explanation. Doctors were saying I needed mental help… In 2012 I was in a different state and was diagnosed by hydro-cystoscopy with interstitial cystitis. I had no idea what that was. The doctor told me to immediately start the ic elimination diet and stick to it. He then told me about ic support groups. I wondered why I would need a support group when he made it sound like I would just pee more and would be okay if I stuck to this diet… I quickly learned that the diet didn’t always help. So as the years past I learned to deal with it. I started to learn my limitations and I worked very hard to find the new me. To be a good mom and spouse. I’ve been in remission twice with ic. I have no idea what got me there, or what stopped it. I didn’t do anything different. I have suffered side effects from medications that won’t go away. But I’ve learned to push. Without my sisters and brothers through support groups, I don’t think I would’ve made it this far. Eventually I became “okay” with the new me. I didn’t like it. But I accepted that I won’t escape the pain or the disease, but I couldn’t let it destroy me or take any more of my life from me. I learned to rest when my body told me to and to stay away from certain things. Not even a taste! 2 years later I got hit with a new pain. A pain that dropped me to my knees in the middle of Walmart. Took my breath away. I thought something in me ruptured. After a day, I was okay. It just went away. The second time it happened I was vomiting and had diarrhea. My neighbor found me on the bathroom floor, shaking and ghost white. Something was horribly wrong. Finally my doctor said to come in. The first time it happened she told me maybe it’s a bug and it would be okay. Rest. This time she knew it was too coincidental. My mother in law took me and as soon as my doctor saw me she admitted me to the hospital. They did all kinds of tests. Put me to sleep for some scopes. Nothing. After one week they released me. Referred me to a bigger hospital with a exploratory in mind. So I was thinking, I’ll finally get answers. All this new doc had to do was sign off on the surgery. Instead, he did a physical, told me he felt something off- but he believed counseling would benefit me greatly. He believed my pain was psychological… he had the audacity to say that! I told him where he could put his degree and left. Cried for a while. Lost all hope. My pain had gotten worse. It wasn’t just every other week. Now it was every day I was having those “spells”. 6 months later an ic sister pointed me in the direction of a specialist. At my first visit he did a physical and immediately noticed my uterus was enlarged, and hard. We scheduled an exploratory, and hysteroscopy. He did a biopsy to confirm his suspicions. I had adenomyosis. My uterus was in very bad shape. He helped me with pain medications, but they didn’t help. By my 6th month check up it had progressed. He recommended a hysterectomy. There I was, just turned 28, hoping for the go ahead to try for at least one more child… and he wants to take that away from me. I was heartbroken. I immediately told him that wasn’t an option right yet. So he explained my quality of life would continue to go down. I told him I could handle it. A few months later I started having to miss work more. I started having trouble walking. I felt like I was in labor. Turned out- my uterus was contracting as if I was in labor. After my stay in the hospital years before, my spouse never missed a doctors appointment, he was very active with my health and treatments. He encouraged me to have the hysterectomy. That we are blessed with Haley and we have each other. We would be okay. Still, I wasn’t okay with it. Over Christmas break of 2015 I was bedridden. I took some time to REALLY think about this. I asked myself what good I was to anyone in that condition. So I scheduled an appointment with my doctor and scheduled surgery. Turns out, surgical pain isn’t near as bad as the daily pain I experienced. I also have fibromyalgia. I’ve started a new medication to help with this. Of course no one would treat it, so it took years to find the doctor I have now who is treating me. Side effect is short term memory loss… if it gets too bad I’ll have to stop… but I can walk and not limp now. My scalp still hurts, and I still have pain- but not where I’m bedridden. Life is hard, especially with chronic pain illnesses… we have to learn to take it day by day. Sometimes hour by hour. And even when we know we should do this- it’s hard. The world doesn’t stop just because you’re ill. I still get criticized. By friends, family, and around work. But I am who I am. Some days I hate who I am, or what I am… Sometimes doctors take hope away, rather than giving it. We lose many people to suicide and while some say how selfish it is… I understand why. After a while, you lose hope. You start to feel like nothing but a burden on your family and friends. Really, to anyone around you. The financial side of it, as well as not being able to help or do your part. Some days you’re just existing- not living.

Rachel: I have a disease called Interstitial Cystitis, also known as Painful Bladder Syndrome which I think is a much more succinct name for it. To truly tell how I came to be diagnosed with IC I need to start a few months before that.

It was Fall 2014, I was 28 years old and I had just begun my first semester at Gallaudet University in Washington DC. It was a very exciting time. But I got sick with bronchitis which was nothing new since I have had chronic bronchitis my whole life. Even on my three inhalers, antibiotics, cough syrup with codeine and steroids, I persevered and went to school (I wasn’t contagious). And then when I was finally feeling better in early October 2014, my dad died. I won’t go into great detail here, but he had been sick for many years and it was a huge shock. And I got sick with bronchitis again. His death was incredibly stressful for my family and it took its toll on us. One month after he died, my dog died unexpectedly. She was 15 but still unexpected. In the course of one month, I lost two of the most important people in my life. And it got worse. The ‘relationship’ I was in which wasn’t that great, to begin with quickly deteriorated because he couldn’t understand why I was sad all the time. He wanted me to just bounce back and be myself. So I stopped talking to him completely. And then my best friend at the time couldn’t handle my stuff so she disappeared from my life. I didn’t have time to dwell on the fact that my relationship and friendship were over because I was too busy trying to mourn my losses, all the while still in school. I came out of that semester with a 4.0 GPA.  No matter what happens…I am determined to succeed. But that’s just the beginning of my story.
The new year came and went, I was in a foggy haze. Still trying to figure out what all just happened. I hadn’t been taking care of myself. In February 2015, I thought I had a Urinary Tract Infection (UTI) so I chugged some cranberry juice and kept going on with life. But it didn’t get better so finally in March I took the time to go to the doctor for a UTI test. They tested me, gave me antibiotics and it was negative. I went back a week later, still in pain. Test again. Antibiotics again. Negative again. They did some exams and tests on me but couldn’t figure out why I was still in pain. They sent me to a urologist. Luckily, I went to a doctor who was familiar with IC. Many people with IC are misdiagnosed for years before they find a doctor who can correctly diagnosis them. I was one of the ‘lucky’ ones who was diagnosed early. There is no known reason or cause for IC at this time but my case is believed to be extremely stress induced. I didn’t really understand what IC was and I definitely didn’t understand that it was chronic I thought I had this disease beat, no problem. I figured it would take me 6 months to a year to really kick this IC to the curb. But almost 2 years later, my life has been upended…it’s worse than ever and I have new health problems popping up with all the time, such as Pelvic Floor Dysfunction and it’s exacerbating my chronic migraines.
Finding out early that I have IC when most people have to wait years is very bittersweet. No matter what I would have IC, whether I found out early or much later on. So in a way, I am grateful that I found out early… being able to put a name to the disease is kind of therapeutic. But this disease is thoroughly destroying me.
You can read about My IC/chronic illness journey on my blog A Life Less Invisible at www.alifelessinvisible.com
Katie Jo: Hi. I just saw your request looking for guest writers and thought I would share in an attempt to feel better. I started having problems when I was 19, I got my first kidney stone. Wishing a year I had several more and a daily pain in my pelvic section that I tried to ignore, as I was a full time college student and worked full time. The pain grew and worsened steadily, and before I knew it I was seeing doctors every week, and visiting the ER more often that any person should. My life felt like it was spinning out of control. This continued for years as no doctor knew what was wrong and many of them began to assume I was looking for attention or pain medicine. They belittled me, wrote me off, and out right told me I either had mental problems or an opiate problem. This was frustrating and heartbreaking for me. I looked like a normal healthy 20 something year old, but my body was attacking me everyday and my quality of life went downhill fast. It got so bad, after I finally had a doctor prescribing me pain medicine, my parents kicked me out because they thought that I was lying and abusing drugs. Nobody understood. Then, December 2010 I was finally diagnosed with IC, chronic kidney stones, and endometriosis! I thought this would make everything different, and I was so relieved to have this piece of paper that relished in the truth of my pain. But it hasn’t changed much in the way doctors treat me, and eventually I quit asking for pain medicine because I couldn’t take the abuse from the doctors anymore, and I was scared that my body had become addicted to the medicine. I thought “I am too young to be like this” unfortunately, I still struggle with my pain on a daily basis, and I know that having pain medicine would really enhance my quality of life, but it seems that my diagnosis doesn’t mean much to those in the medical field because they are so unfamiliar with IC and again because I look like a Normal healthy 30 year old. I feel very isolated and alone with my disease, it effects every aspect of my daily life including intimacy with my partner. All I want is to be able to live without being in excruciating pain everyday. 😔
My Bittersweet Moment: I got married to my wonderful husband four months after graduating high school. Everything was going great until one day I couldn’t get out of bed by myself and it made my whole body hurt whenever I breathed in and out. We thought maybe I was just getting sick but this continued for months before we finally decided that we needed to figure out what was wrong. We would have gone sooner if I thought there was something actually wrong but I just blamed me feeling like crap 24/7 from working a lot and still trying to have a social life after work. A few years ago, after many surgeries, tests, needle sticks and crappy medication the doctor came in with a wierd look on his face and that was when I knew it was bad. He said I have what is called interstitial Cystitis which is a bladder disease where my bladder lining is wearing away and if it disappears and my urine gets in my bloodstream it will kill me. I was told I also have Endometriosis where my organs stick together and are bruised and battered inside my body and not working very well.
When he told me this, a part of me was relieved that I finally had a name for what was wrong with me, but at the same time I knew my life was never going to be the same anymore. There is no cure for either of those diseases, only treatments and even those don’t work very well on others or myself.
I have been dealing with these diseases along with Pelvic Floor Dysfunction for four years now and it still makes me sad every time I am reminded that I can not do all the things I used to do anymore. My whole life changed in a matter of minutes.
I recently went to my pain management doctor and he said they are running out of ideas to help me with my pain. Either I am on pain meds forever or I get my bladder removed or have a hysterectomy and I don’t even want to consider them until I have no other options.
People deal with their illnesses in different ways, but inside we are all suffering and we are all struggling just to make it day to day. Please be kind to others who may look or act different than you. You never know what they are going through on the inside while looking fine on the outside.
You can find me on my Social Media Sites HERE
What is your bittersweet moment? Comment below!
Chronic Illness · Chronic Pain · Expression · Health · Invisible Illness · My Feelings · Pain · Personal · Writing

When the Hardest Part of Your Chronic Illness Is the Way People Respond to It

I look in the mirror and don’t even recognize myself anymore. Where is the strong, confident, beautiful girl I used to be? Ever since I got sick, I slowly shut out everyone and everything in my life until I had my own world of books, music, doctors and my husband. I rarely left the house except for shopping and many, many doctor’s visits. Somehow that routine stuck. Four years later, that is still my life.

I stay home, clean, then relax all day, trying to manage my pain and hope I can make it one more day. On my good days, I manage to clean the house and maybe do laundry. On my bad days, all I can manage to do is move from the bed to the couch, and usually I don’t move from there, not even to get something to eat.

When I first got sick, I still went out with friends and family, still had whatever social life I could have while being in pain all the time. But after a while, I got sicker and started having more pain then I could handle. I started staying home more, relaxing. The longer I stayed inside, the less I got invited to do anything. Pretty soon the texts and calls stopped completely after not being able to go out due to my severe pain levels. After a while, I just turned off my phone and ignored everyone, becoming self-isolated. I couldn’t stand to go outside because I knew if I did, I would be in pain or I would see someone I knew and they would avoid eye contact and walk the other way.

This isn’t to make you feel bad for me. This is just what I do every day. I am not “lazy.” I am in pain. I do not sit around because I want to; I sit around all day because I have to. I do everything I can do make myself feel better every day. There is no cure for my disease, and I am not optimistic for any cure in the near future. I have lost many friends and family members over the course of my life, but not as many as I have in just these four years. Yes, part of it was my fault, but part of it was also theirs for not trying to understand when I didn’t feel good enough to go to the movies or walk around town for a few hours. I’ve been told I’m making excuses because I just want to be lazy all day. I’ve been told it is too hard to be around me when I’m going through this, or that if I had just done something differently, maybe I would not have “caught” this disease. This is not something you can catch.

Chronic pain is no joke. Most people with chronic pain try to hide how much they hurt because they do not want to feel like a burden or because people get tired of them always saying they do not feel good. But do you know the hardest part of this disease for me? It isn’t the constant pain, or the severe lack of sleep due to pain. Its the fact that when some people ask about me and what I go through, they decide after listening that it would be too hard for them to stay around while I go through this. So they leave. Thinking it will be easier for them. It may be for them. But for me? That’s the part that hurts me.

Every time someone learns I have severe health problems, they give me that look like I shouldn’t be out of my house. Some of the comments I have heard either directly said to me or behind my back when they thought I was out of earshot hurt so badly, I started to believe those things about myself. For months I laid in bed, just thinking those things over and over again.

Life has not gotten much easier since I got sick. It’s still the same routine and same boring day after another. But there is one difference that wasn’t there four years ago: I am stronger now. I can finally feel good about myself again. When I start feeling down, I just look back and see how far I have come.

My illness used to control me. Now I control it.

A Day In The Life With Chronic Pain · Awareness · Chronic Illness · Pain · Writing

Why I Dread Pain-Free Days

Written By: Cat Thurmon

 

Do you ever have the really good days?  The days that you feel virtually no pain?  No matter if it is from meds or just a chance of luck? I’ve come to dread these days. “Why?” you may ask. “Why would you dread a pain-free day?” Because when the pain goes away, it makes me that much more aware of it when it comes back.

I guess you get so “used to” the pain that you get numb to it. Then here it comes out of the clear blue: a day without. This may last for a few hours, a day or more, but you know inevitably it’s coming back. And when it does come back, it comes back like a lion.

Bam! There it is — the unbelievable pain. It’s as if the pain that would have been a three on the scale is suddenly a nine. Your memory is refreshed with the fond memory of what “normal” is.

 

Read The Rest Of The Article  HERE

Awareness · Chronic Illness · Health · Pain · Writing

To My Loved Ones Who Can’t See the Pain I Feel Inside

 

People just can’t see it. I am shouting inside but silent on the outside. I want to run away, escape or just return to who I was before everything happened.

I don’t know what to do to make my family feel better. Knowing they are suffering because of me creates a burden to me. They just keep telling me, “Be strong, you can make a bigger effort.” But the problem is that they just don’t understand that isn’t always possible.

Yes, I am angry at what I am going through. I am 17 and I have a chronic illness that will be beside me for the rest of my days. I am scared of the future, because I know it won’t be the way I imagined it would be before everything happened. I used to dream about the future, and now I just dream of having a second without pain.

It’s very hard feeling pain 24/7. You are always exhausted and you can’t recharge your energy. I feel like I was burned, pinched, stabbed, cut, that painful feeling when you have your hand in a bucket of ice and more. I never thought it would be so hard doing all my daily activities. Today I just thought of laying in bed because it’s just too much.

I keep fighting for all my loved ones even if they don’t understand at all what I am feeling. I know they will always be there for me, but sometimes I wish they didn’t know me so they didn’t have to go through this. They don’t deserve it.

Nobody deserves living with this or other diseases, but I believe everything happens for a reason. And people going through this are stronger and learn to appreciate life pain-free.

If you are a patient, know you can do this and that you have to live through this because you can get over it. If you are family, don’t be hard on him or her, just be there with them and try to do something to make them feel better, not worse (because it’s very easy for that to happen — even if what you are saying has the best intentions, be careful). If you are a friend, be there for him or her and never leave him or her, even if they ask you to or it starts to get difficult, because they will always need you, even if they don’t say it out loud.

Having someone you can count on is the best thing. It helps us get through this easier, so please never leave.

A Day In The Life With Chronic Pain · Chronic Illness · Endometriosis · Expression · Health · Interstitial Cystitis · Invisible Illness · Links · My Feelings · Pain

Advice Needed Please

So, I decided to share something more personal with you guys and maybe get some opinions on what you guys think. Please, just read it, don’t judge. Feel free to comment what you think, but please don’t be rude.

WARNING: This post may be all over the place, but I just need to get it out.

 

So when I turned 18, I got married four months out of high school and have been married four years this year in October. When I first got married, everything was amazing. Then one day about four months later, I started having symptoms of what I now know is Interstitial Cystitis and Endometriosis as well as some other minor diseases. It started small, and then got worse very fast. I would wake up crying and could not get out of bed due to the pain. I was so scared.

Interstitial Cystitis and Endometriosis is treatable, but there is no cure. It can become life threatening but it is rare.

Anyway, I spent months going to doctors and getting poked and prodded to the point where I felt like a pincushion. Finally we got my diagnosis. I was devastated. I felt like my whole life was over. I was put on many meds to try and treat it, and instead of treating it, it seemed to make it worse for me. My symptoms became much worse and for two years it got so bad I now need help up the two stairs to our apartment, sometimes I need help walking in general.

Anytime I walk anywhere now even if it just to take out the trash, I come back and my stomach is bigger. I keep getting people asking me when I am going to have a baby. That is how big it gets sometimes. Its called a flare. I flare from the simplest things. Food, walking, sitting for too long, car rides, etc.

I spend most of my time in bed and the times that I am up and not sleeping, I am sitting on my side of the couch with a heating pad/Frozen ice bottle, pain meds, ect. I take two-four baths a day just to help loosen my muscles.

When I told my mom about my diseases, she said the worst thing I think you can tell someone with any kind of problems. ‘You were not sick when you lived with us (I only lived with them for a year, My grandma raised me from the time I was ten till I was 17 then I lived with my parents a year before getting married and graduating. I spent the rest of my life with my Grandma) and then you moved out, got married to someone we never met, and suddenly you are sick. I do not believe you.”

This just broke my heart. I finally am trying to see it from her point of view, but at the same time, it still hurts. I mean she could go forever not believing me and I had to do something. So I sent her the pictures of my bladder and stomach from the surgery to her and tried explaining what it all meant. She just said she would have to take my word for it.

I have always tried SO hard to get my parents approval. It became an obsession as a kid, sadly. But lately I have finally decided that if they don’t believe me, it should not affect me. I need to take care of myself and not worry about whether they believe me or not. But I do need support. These diseases are not easy to deal with, its emotionally, physically and mentally exhausting. I know my Grandma may not believe me, but she is always helping me find other alternatives like natural medicine to help. She is way into that stuff since she has battled cancer twice.

She never told me she didn’t believe me, all she ever said is if I try things that are natural it will help my pain, it won’t cure it but it will help.

When people say have you tried this or that, it gets me so angry. No matter what I try I will not be cured. But they see trying this or that as a CURE.  And whenever I take the two minutes it takes to put on a nice shirt over my sweatpants  and a little makeup, people say the rudest things. Someone told me this just the other day “I KNEW you were lying about being sick! You just want attention so you say you have two incurable chronic illnesses.” This hurt way more than I wanted to admit. I finally found my voice and said that if they really thought that, then I do not need them in my life. Then turned and walked away.

 

Sorry for the post being all over, but I need some advice/help with what to do about it all.

Comment below or hit the contact me page up top and shoot me a text or email.

 

For those of you who would like to know more, here are some links.

Interstitial Cystitis

Endometriosis