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.
: 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.
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.
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What is your bittersweet moment? Comment below!