‘There’s nothing else we can do.’ I lost my hair in handfuls at a time. It was hard to look in the mirror. I didn’t see the point in living.’: Chronic illness warrior says ‘I’ll never take life for granted’

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Trigger Warning: This story contains mention of suicidal thoughts that may be triggering to some

“Before the year 2017, I was a reasonably healthy person. I got the occasional cold, and there were times between work, school, and social activities I would nap and rest. But for the most part, I was your average female living a relatively normal life. It wasn’t until my health declined I realized how privileged being an ‘average woman with normal health’ actually was.

Courtesy of My Painful Bladder

In May 2018, I got my first urinary tract infection. At 31, I never had any bladder problems before in my life, so I got nervous. It was scary, painful, and uncomfortable. I would wake up multiple times a night from the sudden urge to urinate, then I’d run to the bathroom but nothing came out. This happened night after night, along with urgency throughout the day. After a week of suffering, I went to urgent care and they told me I had a UTI. I was so relieved knowing it was something that could be fixed. But after a week on antibiotics, my bladder wasn’t getting any better. It was actually getting worse. The times of waking up at night to urinate had doubled, and I had tried every home remedy possible.

I tried three more antibiotics for the remainder of the month, but nothing helped. The next month, after an uninformative and irritating urologist visit, I got diagnosed with Interstitial Cystitis. I was disappointed, but I also didn’t take it very seriously. The nurse told me my new normal: ‘Can’t eat acidic foods, you may get up to pee a few times at night.’ They gave me a prescription to make me pee less, and I was off! ‘I can handle it,’ I thought! But within 6 months, it started to rule my life. Getting up anywhere from five to 20 times a night to pee drops, crying to different urologists I needed something for the pain, burning, urgency, and frequency, with little to no help. Urologists brushed me off or demanded I do invasive procedures that promised minimal relief, and I was left leaving the office in tears.

Courtesy of My Painful Bladder

It wasn’t until years later I found out from the help of other female sufferers, that IC sufferers were usually misdiagnosed as chronic UTI sufferers, a disease that is often overlooked, and still very misunderstood. That chronic embedded UTI, along with a co-infection called Bartonella, was the reason for my bladder pain, yet no urologist or doctor had told me about either of those conditions, regardless of my inquiries and questions about what was causing me this unbearable pain.

Unfortunately, this was only the beginning of my health decline. About a year before this, in 2017, I had stopped taking the birth control pill after being on it for 15 years. I didn’t need it anymore, and I thought the days of heavy periods and hormonal acne were over. The first 2 months without the pill, I felt great. My depression had lessened and my sex drive finally came back after years of being minimal. So I threw those pills in the garbage and went about my business. By the third pill-free month, I started to notice a lot of hair in the sink when I washed it. By month four, my ponytail had shrunk in half, and everything had hair on it: my clothes, my pillow, the bathtub, etc. I started to see bald patches on the back of my head.

Courtesy of My painful bladder

I saw my gynecologist and she said this was normal. My body was readjusting after getting off birth control, and this was a hormonal shed that would stop after a few months. But it got worse. By month 11, I panicked and got back on birth control. I didn’t want to be on it anymore, but I was determined to do everything in my power to stop this shed that had turned into a living nightmare. I waited and waited for my hair to stop falling out, but it never did. I was given steroid shots, which made my scalp bleed and caused headaches.

I spent thousands of dollars on supplements, pills, and shampoos, all resulting in money wasted. And my hair loss remained the same. I was diagnosed with androgenic alopecia and telogen effluvium, and there was simply ‘nothing else we could do,’ the doctors said. The stress of losing my hair, handfuls at a time, caused me so much anxiety it was hard to leave the house or even look in the mirror. This new diagnosis, along with my bladder, caused me to fall into a depression, but my health was still in for more disturbances.

Courtesy of My Painful Bladder

The year 2019 started with more physical symptoms than I had ever experienced. Random numbness of my arm and face that would lead me to the emergency room. Being in front of the classroom at work, fumbling my words around, and forgetting what I was saying mid-sentence. Sometimes, I literally would not be able to get words to come out of my mouth. My legs and arms would ache so badly I felt like I would vomit. I had insomnia from my bladder pain that would lead to exhaustion and frustration during the day. I developed suspected endometriosis, which left me sobbing in pain, unable to eat, and throwing up at times, with no relief.

Physical pain became something I dealt with every single day. I wasn’t just ill, I was chronically ill, a term I had never even heard of before. In April of 2019, I was finally diagnosed with Fibromyalgia. My body felt like it was getting squeezed, pulled, and sat on. Everyday. I couldn’t find anything to make the pain go away. I kept trying different diets: keto, paleo, no sugar, no starches, no eggs, and so on, but nothing gave me any relief in my bladder, my body’s physical pain, or my mental health. By the fall of 2019, I could barely work. I would be able to work 2-hour days and needed to rest for the remainder of the day. No social life, no plans, no hope… just laying on my couch and wondering why my body hated me so much.

Courtesy of My Painful Bladder

My bladder pain continued to wake me up every single night to urinate. I started using a heating pad to numb my bladder, leaving me with permanent burns on my stomach, legs, and pelvis. I was given sleep aids and other medications, but nothing helped like that heating pad, even though it left me with horrendous welts and scars. My mental health really started to decline at this point. I didn’t really see the point of living anymore. Every day, I would wake up with one more symptom, be left with one more medical bill, cancel more plans, see my friends less. My quality of life was terrible. I was so sick of going to the doctors just for them to brush me off, tell me I needed to take medications I already tried and failed with, or this was simply an incurable illness, and there wasn’t much they could do about it.

It felt like there was no hope in sight, and I just told myself I simply could not do life anymore. One day, on one of the IC boards I looked to for support, I read about a woman who said that most bladder pain patients have Lyme disease. The more I read about Lyme, the more I identified with all of the symptoms it caused, and realized I had almost every single one. After FOUR different doctors testing me, refusing me, denying me the right tests, I finally found one that listened to me and believed me. I took the right $1,000 test and was diagnosed with Lyme disease and two co-infections. I never was bitten by a tick, I don’t live in the woods, and I have spent thousands of dollars and tons of money on co-pays of other doctors diagnosing me with things that were really just Chronic Lyme.

Courtesy of My Painful Bladder

Now, I knew why I was sick, but I needed to start a much more difficult journey: to become well again. My Lyme literate doctor said, ‘If Lyme was easy to treat, no one would have Lyme disease.’ This is going to take time, patience, and a lot of work. It is now December of 2020. I have been dealing with a Lyme disease diagnosis for 9 months now. I have been out of work due to a global pandemic for that same time. I take over 30 pills a day, every day, to fight this disease. I have a urologist, psychiatrist, psychologist, urogynecologist, and family care doctor that are all working to heal my body. I have medical bills that exceed my monthly pay. I have no real form of income because I am still so sick, but  I am still here, and I am still fighting. I still wake up anywhere from three to 12 times a night to pee, I still have terrible aches and pains in my body, and I still have such severe brain fog I forget some family and friends’ names at times.

There are days that life seems okay, where I can take walks, cook my own food, laugh at my favorite tv show, or sing to my favorite song on the radio, days where I see hope. Then there are absolutely terrible days, days when I feel I can’t do it, I can’t keep going, days when I don’t want to keep going, days when there is only darkness. Days where I mourn my old life and sit grieving about how things are now. Some days, I don’t get out of bed until it’s dark outside and some days, I cry myself to sleep.

Courtesy of My Painful Bladder

But there has been some good that has come out of all this. Firstly my husband, the one person who has gotten me through all this, has shown me more love and support than I have ever thought possible. Whether it’s holding my hand while I’m peeing blood, rubbing my back in the emergency room at 3 a.m., driving me to my specialist appointments when I’m too tired to even sit up, or just holding me while I sob more tears than humanly possible, he is there, and we are closer than any couple I know. He has shown me what unconditional love is, and for that, I will always be thankful. Without his love, I honestly don’t know if I’d be here, I don’t think I would have had the will to keep going.

Another positive thing that has come from this is I found a community on social media that has helped me during my worst mental and physical flare-ups. Their solidarity, knowledge, and strength have made me forget about the days I thought social media was full of bullies and women who tear each other down. I have gained so much wisdom and information about treatments and coping strategies for chronic pain. Honestly, there are times I talk to these women more than I talk to my friends and family. I even have received books, letters, and homemade gifts from some of them, and developed real friendships— something I never thought possible.

Courtesy of My Painful Bladder

Lastly, I found myself. I have found a new voice, a new passion, which is making myself well. I have finally found out what life is like for the sick, the poor, the oppressed, and the one that isn’t getting help. Through these trying times this year, I have found it even more important to raise awareness for the ones who don’t make up the majority, the ones that are suffering, and in that, I have found a passion within myself to keep going, not only for myself but for the people who don’t have the strength or privilege to speak up for themselves. I found out sometimes doctors don’t know all the answers or have all the miracle medications, and that’s okay.

Sometimes we have to advocate for ourselves because there is no one else to do so. I try to fight for the women who are suffering, and I try to be a voice for those who can’t pay for doctors, who don’t have access to specialists, who don’t have the physical ability to even look on the internet for answers day after day. Through all of this, I suppose I have learned about life, and I think about all of the things I have been taught the past few years. Sometimes I look at all this as being a dramatic, abrupt, soul-crushing experience, but one that made me take some time for myself.

I now have to listen to my body, take care of myself, and realize when I do get better, I will be so fortunate and lucky to live the life that others, and my past self,  have taken for granted for years. Other times, I curse everyone and convince myself I’m not learning anything. I believe it’s unfair and I’m sick of suffering. I think the truth is in the middle. I hate what these diseases have done to me, and the things that they have taken away. But in some ways, they have taught me so much about myself, about who I am and who I want to be, and how strong I am. I am now looking at the people who I need to reevaluate in my life, and I know once I’m better and more myself, how important keeping the good in and the bad out is in order to maintain remission. I know how absolutely precious this life is and how I will never ever take it for granted, not even going outside and smelling the roses, because there were days that was impossible. So I keep going.”

Courtesy of My Painful Bladder

This story was submitted to Love What Matters by My Painful Bladder from California. You can follow her journey on Instagram and her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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