In 2010, I was in the height of life at age 30. I had moved back home, was going to culinary school, making friends, met the new love of my life (post-divorce), and was simply enjoying exploring all the possibilities life had to offer. Underneath it all I was depressed after leaving my first husband, but I hid it well and managed to enjoy things anyway.
I suffered from the most horrific monthly cramps, but I had been suffering once a month for all my life without painkillers, and it just made me enjoy the days I wasn’t in pain so much more.You never realize how much you can enjoy life until chronic pain makes it impossible. I look back fondly at the good old days, hoping for another good day in my future.
Waking Up Partially Paralyzed
One day in 2011, after a week of feeling my hip was out and trying to pop it back in, I awoke with the most excruciating electric pain shooting down my right leg. I tried to stand up, and discovered that I couldn’t feel anything in my left foot. I thought my foot was asleep, but nothing I did would “wake it up.” I was partially paralyzed from the waist down and couldn’t walk without collapsing from the pain.
A visit to the hospital, and the x-ray results revealed what the doctor wanted to call Degenerative Disc Disease. She said one of the discs in my lower lumbar had degenerated and collapsed, and was likely pinching a nerve that was causing the pain.
I was told there was no cure and I would simply have to learn to live with the pain. That answer did not make me happy.
Living with the Pain
I suffered through the rest of culinary school on a cocktail mix of pain relievers that left me foggy and tired, but I was determined to get through school. Unfortunately, my condition limited my abilities in the kitchen, making my internships almost intolerable. I still managed to finish with honors, but there was no way I was going to be able to start the apprenticeship I wanted so I could start earning my dues in the kitchen.
As the months passed, my symptoms worsened. The stress on my nerves was causing me to lose feeling in more than just my lower left leg. I began to suffer from incontinence. I ended up with a major lung infection that had me coughing for months, and every time I coughed I would pee or poop in my pants. Not wanting to confront adult diapers, I’d just wear double pants and keep a change of underwear handy at all times. It was truly depressing.
Saved by a Chiropractor
I’m lucky to have had a very close relationship with my mom. As an only child, I’m her pride and joy, and one concern in life. I feel comfortable telling her anything, more so than any relationship I’ve ever had. I poured my heart out to her sometimes daily and weekly, telling her about my suffering and mishaps. I’ve since become more sensitive, realizing that as a mom it must be torture to hear your child is in so much pain. But it was my mom who helped me make a breakthrough discovery.
My mom reported all of my complaints to her chiropractor (Dr. Carb), who had gone through a similar situation himself. He asked to see me, and insisted I get an MRI so we could take a closer look. He was the one who discovered that I did not have Degenerative Disc Disease, but in fact the gel between my discs had punctured and was leaking. The gel itself was in full contact with the left side of my spinal cord, while the right was brushing it slightly. This made so much sense with the symptoms I was having!
As a result of this discovery, I was able to schedule a simple out-patient surgery. A vacuum tube was put into my spine to suck out the gel, and the hole was sealed. After the surgery, the relief was immediate. If you’ve never had something touching your spinal cord 24/7, you can’t even imagine what that relief is like. I will never forget it.
Following my surgery, I have never been able to get back to 100%, but the improvement has been drastic. It is likely that the average person would be able to return to full function after physical therapy, my case has been a bit different due to other medical conditions that have since come to light.
Trying to Be Normal Again
In 2012, I was moving along well with physical therapy. My doctor said I could take on any physical activity I wanted, it just might take time to retrain my muscles and regain some of the feeling in my nerves.
I tried taking a dance class, I had previously been a dancer and this was my favorite way to achieve physical fitness, but the adult classes made me feel ridiculous. The beginner classes were a bit ridiculous as I already knew all the moves, and the advanced classes I just couldn’t keep up with. I ended up in an advanced class with a bunch of 11 to 13 year -olds, which I found oddly comfortable and much easier to keep up with. That’s when my chronic exhaustion started.
By the end of 2012, I was experiencing chronic exhaustion for 2 out of 4 weeks a month. During these weeks, it took every effort I had just to leave my bed. On my days off I would sleep for 18 hours straight and still feel tired. Because we had been trying to conceive, I was keeping a strict calendar of my period and ovulation, so it was easy to connect that my exhaustion episodes were surrounding those events. I was sure there was something wrong with me hormonally, so I went to the doctor to get it checked out.
The doctor I found (Sage Family Medicine) was amazing. She looked at me and immediately noted that my neck and thyroid looked and felt swollen. She ordered blood tests, ultrasounds, and biopsies, and found hypothyroidism (underproductive thyroid) and several large nodules (growths) on my thyroid. Luckily, and as is common, the nodules were benign – yay, no cancer. But I was put on a regular, low dose, of levothyroxin, a synthetic version of what the thyroid is supposed to produce, and this helped lift some of my exhaustion.
In the year following my hypothyroidism diagnosis, I was doing better on my medication. The exhaustion had reduced from 2 weeks, to 10 days, and then just to a few days surrounding ovulation and my period. Not so bad considering how it was before. But things were still not right.
My periods, extremely painful throughout my life, were getting worse and worse. I was bleeding more and more excessively, and the pain was so bad that no over-the-counter painkiller could touch it. The exhaustion and overall body pain were truly debilitating. I was on the path to overdosing on painkillers, until marijuana was legalized in Colorado and I used that to replace them. But I wasn’t able to function at all during my period, and I was also having trouble conceiving. So I went on a hunt to find an answer and possible cure to my pain.
I did internet research. I spoke to specialist after specialist. I was hospitalized twice for my pain. My diagnosis was always “heavy bleeder,” which I do not consider a true diagnosis but actually a symptom. I was also diagnosed with IBS, and ended up in a colonoscopy to remove polyps, but still no symptom relief.
I continued to explore the possibilities and try to find out WHY. Then I came across an article in Cosmopolitan online, and my life changed.
I had never heard of endometriosis, but the second I saw the symptoms it causes I knew that was me. Unfortunately, diagnosing it is not simple at all. The only way it can be discovered and treated at this time is by opening up your belly and looking inside. I spent all of 2013 trying to find a doctor who would be willing to do this, but they all insisted I should try hormone therapy (something that would interrupt my desire to conceive) or heavier painkillers. No one wanted to do the surgery.
I finally found a doctor (Women’s Health Associates) who specializes in endometriosis specifically. He was surgeon and, upon hearing my symptoms, he immediately scheduled me for laparoscopic (low-invasive cutting through the lap) surgery, which I had at the end of 2017.
There is nothing more satisfying than finally confirming that what you knew all along is true. My surgeon discovered a large “colony” of endometriosis that had spread across my insides, along all my lower abdomen walls and organs. He was able to remove it by burning it off with electricity. Unfortunately, there was a small portion of it completely blocking my Fallopian tubes that was unable to be removed, and no confirmation that my endometriosis wouldn’t grow back. This was sad to me, but I was hopeful that further treatment might help.
Lupron – The FDA Can Go Suck It
I ended up making a detrimental decision at this point. I was so happy with the result my surgeon had, just finding the endometriosis, that I was willing to try anything he suggested. He told me that two 3-month injections of the hormone suppressor, Lupron, could shrink the endometriosis so it would fall out of my tubes. This was really my only hope for having children and fully ridding myself of symptoms.
My research of Lupron told me that the side effects could be bad, but I wasn’t finding a lot of present-day reviews of the 3-month dose, just negative experiences with those who had daily injections several years ago. The drug was originally put into use, to suppress hormones in men for treatment of prostate cancer, but the FDA had approved it for treatment of endometriosis. This somehow comforted me, no idea why I felt like I could trust the FDA, because most of the complaints I saw were from women being treated for infertility, something it had not been approved for.
Within a week of my Lupron injection all of my feelings of exhaustion came back, this time with a debilitating bone pain and migraines that had me unable to get out of bed for about a month, and a slew of other symptoms that came and went. I went back to my doctor for answers, but all I was told was that they would wear off within a couple weeks. I was giving an antibiotic to help clear up an ear infection, which helped some, but otherwise left to wait and see.
Discovering AutoImmune Disorder
Several months later, I am still living with daily debilitating pain, exhaustion and migraines. I can no longer work my day job and struggle to maintain a living under disability insurance, which recently ran out due to lack of a real diagnosis – I’m working on fixing that.
Through my research over the past several weeks, I discovered a correlation to my symptoms and autoimmune disorder. It made sense to me that my body must be attacking itself in some way, leaving me with chronic flu symptoms. I asked my doctor to do a new blood test and check all possibilities. This confirmed that I do have an AI disorder, but wasn’t able to isolate where it came from.
My hormones are “completely out of wack” – my doctor’s words – and I have high calcium levels, with low vitamin D. I was advised that we could try symptom management with various drugs (more pushing of Big Pharma), but otherwise I’d have to defer to my endocrinologist and rheumatologist for further answers.
So, I’m working on that.
Trying to Survive with AutoImmune Symptoms
I’m now on a journey (a very painful one), trying to survive in the most basic way (paying for rent or food, and taking care of my rescue kitties as best I can), while finding a resolve to my condition.
I can’t sit up for more than an hour or so without feeling like my head is going to fall off. I can’t stand for longer than 10-15 minutes without wanting to collapse. I worry every day that I am about to die, and fight the urge to spend money at urgent care or the emergency room just to get a wrong diagnosis. But I’m working on finding answers and doctors who will help me, and I am confident I will get past this.
I’ve decided to share anything I can to help others suffering in similar ways. I urge others to start blogging their own health journeys, especially here in the U.S. We need to be in control of our health and medical treatment. If we all continue to document and speak out, we will create a huge amount of information and results that cannot be ignored.
Life is an adventure. This is an unfortunate part of mine, and I hope to use my pain to gain strength and come out the other side a better person.
In the meantime, I have cat hugs, a loving husband, and blogging to help me get through.
And that’s my story….for now.
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