The Day That Changed My Life, Part 2

And the story gets even longer… sorry to have such a ridiculously long post (didn’t realize how long it would take to explain), but I hope I convey the entire story in a way that’s easy to understand (and hopefully not too boring). I am OVERWHELMED by the support I have received in the last 24+ hours after posting the first part of the story. I can’t thank you all enough for reading and commenting, and your comments truly made my day. In fact, they made me cry reading them first thing this morning. I am so appreciative to have you all in my life!

With all of the tension in my neck and shoulder (due to the fibrotic muscles, not just regular stress tension), I was having so many tension headaches that would radiate to my forehead and turn into migraines. As far as my doctors knew, there was a distinction between the two: headache or migraine. However, at that time, and still currently, I believe, they were doing research on how tension headaches and other headaches can escalate into migraines, still with the traditional symptoms like I experienced: an “aura;” nausea; vomiting; sensitivity to light, sound, heat; etc. I was even able to take a class on it during school at MSU. That’s exactly how it was for me. They would start as just a headache in the back of my head (but eventually, that headache was constantly there) and become a full-blown migraine quite often. Anyway, these migraines would rule my life just as much or more than the pain did. I had always had the tension headaches (at least since the injury), but I hadn’t ever had a problem with migraines, though obviously my system was susceptible to them. I couldn’t handle it. It kept me from ever reading books for fun, from doing school work, watching TV. I spent so many days in my room with the lights off, an ice pack on my forehead, heat pack under my head (back of my neck), and a towel covering my eyes from any light that got through. No sound, no talking, and if I was up and around, I was a grumpy person. Trust me. My family and people close to me could account that those were the times I was not pleasant to be around (though I know I still have my days.. :)).

I ended up in the ER several times with those migraines, and of course, with the pain sometimes, too. They would always give me pain medication, and if you’ve studied what pain medication does, it can make migraines even worse through restricted blood flow. Sometimes they were so quick to hand out those when what I really needed was something to just make the pain in my head go away, but understandably, they thought that the less pain in my neck and back, the more the migraine would lessen. Makes sense, right? Except, by that time, I was dealing with two separate issues that had just stemmed from the same original cause. Of course, there were other times when the ER physicians thought I was pain-drug seeking. I would always be offended, but I understood where they were coming from because there are so many that would jump from ER to ER just looking for pain medication handouts. I just was not one of them. The last thing I wanted was to be on pain medicine. I didn’t have a choice if I stood a chance of even making it to doctors’ appointments or even getting up in the morning. Or sleeping a wink at night. It was the only thing helping even a bit, aside from PT exercises and massage.

One of the ER visits ended up landing me in the hospital. My pain management physician decided that he was going to try a few different medications to ease the migraine, but it was going to be over several days through infusion treatments. It helped, but it caused such extreme nausea that they decided to call it an allergy because I couldn’t handle anything in my stomach due to the medicine. It didn’t take long, and I ended up back in the hospital with another migraine. This time, he tried a drug that is known as an anti-seizure medication to see if the principle behind the medicine would help for my migraine. We were going to try anything at this point. All I remember from that visit is starting the infusion, and the next thing I knew, I woke up to find my mom at my bedside halfway sleeping, and when I woke her up fully, she started bawling. My dad was in the bed on the other side. I didn’t know what had happened until my mom told me I had been unconscious for three days, in a medical hepatic coma. Apparently, the last medication that they had tried had caused my liver enzymes to escalate into an acute liver failure state, and I hadn’t been conscious since they had given me the second dose of it. I apparently even talked and joked to my physician and mom as I was going into the coma, but I didn’t remember any of it. I still don’t. I was slowly leaving any awakened state.

Thank God that experience turned out ok. My liver enzymes bounced back to a normal range, but it was as if I had a stroke. The right side of my body and some of the left was incredibly weak. I had to do physical therapy for a few days in the hospital to relearn how to walk, eat, etc., but it didn’t take long to build it back up thankfully.

Unfortunately, as soon as we were able to get out of the hospital and back home (where we were met with a “Welcome Back” sign and outpourings of love and support from amazing friends and people in the community), I started having more weird symptoms. My legs and arms were constantly shaking and twitching. I couldn’t sit still. I had goosebumps over my entire body, but I didn’t feel cold. I was constantly sweating. I had an irregular heartbeat. I remember crying when my mom said we had to go back to the hospital and pleading with her to stay. I couldn’t stand the thought of being admitted again and facing a potentially life-threatening condition like I had before. I thought I could handle the symptoms more than the thought of dying in that hospital room. But, as soon as I was admitted, we learned that I had a potentially life-threatening condition called Serotonin Syndrome that was caused by the combination of drugs together interacting causing too much serotonin in the body. Several of the medications that I had been given in the hospital from migraine treatments and anti-seizure medications to nausea medicines had interacted to cause this horrible thing, and if my family hadn’t have taken me back to the hospital, I could have died. Those two or three weeks were some of the scariest weeks of my life.

Things started getting back to normal, and we just kept on looking for more answers. I couldn’t learn to drive at the normal age because of the medications I was on and the risk of an intense muscle spasm causing me to go off the road. But, after time, my physicians knew it was important for me to learn to drive, so I could take myself to physical therapy or school, and they helped me with a plan of what medications I could omit or take less of if I was having a better day. I finally got my license at the age of 18. I didn’t drive much, but it was a huge step for me to be able to have some freedom. All my friends had been driving for two years already, and though they were able to drive me around if we went out, I couldn’t go out with them much either, and I wasn’t at school full time, so this was my way to be able to be a little independent and be away from home for an hour or two. It was just for appointments, but it was something.

After a few more surgeries (and countless MRIs, CTs, X-rays, myelograms, lumbar punctures, injections, steroids, medicines, you name it, I’ve had it kinda thing), I finally had enough. It was nearing the middle of my senior year, and things hadn’t changed in respect to my overall condition. In fact, I had scarier experiences trying to fix the main issue, and all of the surgeries were life-risking. I was pretty adamant that I didn’t want any more treatment or to see any other physicians. I had tried seeing a chiropractor, acupuncture, hypnosis, relaxation techniques, talking with a pain psychologist, surgery, support groups, massage, physical therapy, occupational therapy, trigger point injections, botox injections, epidural injections, TENS unit, and on and on. In my opinion, I had tried everything. And I was also adamant that I was going to college away. So I interviewed for scholarships and I attended open-houses, and I applied for pre-admit medical school programs. I had done well enough in high school, even through everything, that I could still get into where I wanted to go. It was scary for my parents, I’m sure, to think about me going off to college, but I knew it was what I needed to do.

I graduated with the rest of my class at West Plains High School, Class of 2006. That accomplishment may not mean that much to some people, but to me, it meant the world. I didn’t ever know if I would make it to that point. I left to start college at Rockhurst University the following August. I LOVED it there. I met some of the best friends I could ever dream to have. I started getting involved, and right away, I was doing very well in my classes. But it was so hard. I would cry myself to sleep at night knowing that there were some days I couldn’t get out of bed and wondering if the next day would be one of them. Or wondering if I was going to be able to do ok on a test since I may have a muscle spasm in the middle that escalated the pain. It just wasn’t working. If I hadn’t been so stubborn, I would have waited a while before going off to college. But I was indeed stubborn, and that caused me to have to leave half-way through the semester, a semester I was doing well in, but I just couldn’t handle the pain.

I came home and went back to living with my parents for a few months. I started helping out at the elementary school that I had gone to, and I loved it. I couldn’t do much, but it helped me get out. I took a couple online classes from Mizzou, and at least those helped me feel like I was making some progress. And I kept in touch with friends, which was amazing. But it made me determined to go back the next semester.

I had started seeing a new pain management physician in Kansas City since I was going to school there, and he suggested trying to implant a neurostimulator that works to send electrical signals to the brain and intercept the pain signals that you would normally feel. You do a trial first to see if it is something that will work for you. I tried a spinal cord neurostimulator first, but it did not help the pain. The peripheral neurostimulator, however, was incredible. I immediately felt relief from my migraines and tension headaches. They tried it for my arm and neck pain, as well, but unfortunately, that wasn’t beneficial. The lessened pain from the migraines, though, made it extremely worthwhile, and I felt as if I could finally go back to school again.

I enjoyed college. I had some definite hard times with taking exams and keeping up with classwork because I was still dealing with pain, but I consider myself very blessed to have had the chance to go and complete so much of my degree at Rockhurst. I met amazing people, and I had the chance to be away from home, to learn more about myself and be out on my own, which means the world to me. During my sophomore year, I had yet another surgery, but it seemed to help the arm numbness and weakness some. It was a long thoracic nerve decompression, and though it meant again having to start back at square one with strength, after time, I felt like the neuropathic pain improved a bit. And I was grateful for any improvement.

With my doctor before my surgery sophomore year of college. My best friend took photos of me looking like an alien.

During my junior year of college at RU, I was prescribed a medication similar to one I was given during my time in high school when I was in the hospital. I was doing okay, but it’s always been hard for me to deal with the fact that I am limited in how much I can do before I reach a point of too much pain and can’t catch back up to a normal life. So, my physician prescribed me an anti-depressant, and it was something that I had been on before just to help with the anxiety that I felt. I worried constantly about my pain and school and about my family, who has medical issues of their own (my mom and sister are both in chronic pain with different medical conditions—they are the ones I look up to). However, there were several drugs in that family and the anti-epileptic family that I seemed to be allergic, too. Not much time after I was prescribed this medicine, I started feeling dizzy and passing out randomly. At first, it only happened every couple of days. Then, it started happening more than once a day. In fact, I would go to class and all the sudden, I would wake up and realize that I missed a significant portion of it. I know my professors were worried. After a blood test, we learned that my liver enzymes were elevated, and several blood tests indicated that they were remaining elevated, indicating chronic liver hepatitis, or inflammation of the liver. My body couldn’t take it, so I would pass out. After several stays in the hospital and my mother making countless trips to KC to be with me (as well as my best friend taking and staying with me in the hospital—I have the best support system!), we also found out that I had a heart condition called POTS, Post-Orthostatic Tachycardia Syndrome, which meant that when I stood up or changed positions, my heart rate would speed up rapidly, and it would cause me to pass out. My physicians hypothesized that it had developed due to the stress on my body, probably from the liver toxicity, but it was what caused my body to actually faint and lose consciousness so many times. By figuring that out, though, I could start taking a beta-blocker (yes, I know, more medicine, ugh) that would regulate my heart beat and stop these spells.

It was a scary time. The passing out spells got better, but they would still happen from time to time even after I started taking the beta-blockers. My roommates were supportive, especially my best friend, but they became worried when I said I had hepatitis, not understanding that means inflammation of the liver. They assumed I had something that could be spread to them, and instead of talking to me about it, they went to the Dean of Students at the university. I was very upset at the time, but now, I understand that they were just scared and saw what I was going through, knowing how difficult it was for me. However, with it being a small, private school, they forced me to leave as I was a liability to the university. I had passed out during an exam at the learning center, and the librarian had seen the whole thing. They were scared, and they didn’t want other students to be scared by my medical illness. I wasn’t able to always do school as well as I wanted to, taking tests late and handing in assignments later than due, and that added to their decision. But, I was doing the best I could. I still, to this day, see the act as discrimination, especially since I wanted so much to finish my degree there. But, I wasn’t able to. When my friends walked at graduation, I was sick and lying in bed. Shortly after, I left Rockhurst and applied to Missouri State University, where I continued my education. It was nice to be much closer to family, and it helped turn things around for me.

I lost so much weight after being so sick.

As I worked toward finishing my education, I also started working. I was finally doing so much better—not passing out anymore (the spells had gotten farther and farther between and finally stopped with the medicine), the headaches were managed, the neuropathic arm pain was manageable. The pain in my neck and shoulder still made it incredibly difficult at times, but I pushed through. I just wanted to be normal. I didn’t want to risk what happened at Rockhurst happen to me again at MSU, though they were astounded by how I was forced out there. I wanted to be a normal student as best as possible, and I finally was able to just push through and get assignments done. I did whatever I could to have my life be as steady as possible. I went through some really hard times, even after I was located closer to my family, and I started talking to a psychologist again. I’m grateful for that because she helped me with some relaxation techniques that truly helped me take a break, regroup, and then start again. Around this time, I met Randy, and with him, I felt like I could live normally and work towards my dreams. In fact, he made my dreams come true. He supported me in doing whatever to help my pain and also live a normal life and work towards a fulfilling career. He made sure to be there for me always, driving me to doctors’ appointments in Kansas City. My life was actually an enjoyable life. I was happy.

I had a dream-come-true wedding day. I had a job I loved in research. I volunteered. I enjoyed life. I’m not saying there weren’t many times I enjoyed life in the former twelve years before this point, but I was also anxious and worried that I wouldn’t be able to do something or another because of the pain. I wasn’t worried about that anymore. I knew I was in a good place, and I knew I was going to have to deal with the pain for the rest of my life. I knew other physicians thought I had another underlying condition. It wasn’t going to stop me from living my life.

Last Friday, I had an amazing appointment with a new pain management team here. They were instantly able to understand why I was in pain and know that it all was connected. They didn’t question anything. They listened, and when the physical therapist (that works with the physician) was touching my muscles, she named 12 muscles that she could work on to help the myofacial pain. My muscles are ridiculously tight, and she acknowledged that right away since that is where the majority of the pain comes from. “You could bounce a quarter off her trapezius muscles,” was one thing she said. They talked about an entirely new concept, and they are going to introduce their plan to help me this Friday during our next appointment. I have hope that they might be able to lessen the pain overall. I told them how much I want to get off all my medications, and they told me that I will have to be patient, but they would help me in whatever way they could. They were so encouraging. But either way, I’m happy where I am, and I will get off pain medications one way or another in order to hopefully be able to have a family one day. I just hope there won’t be any need for them after their treatment. :)

I have had so much support through the past years. I am incredibly grateful and don’t know how to thank those people that have been there for me so much enough. My parents spent so much money and time and energy to help me find the best answers possible. They spent countless days and nights worrying and struggling to find solutions for me. They took off from work and other commitments to make sure to be right by my side, and for that, I will never be able to find a way to say thank you enough. My siblings were there for me the entire time. They kept me company, endured so many people asking about me, and were a constant support system. They lost out on so many opportunities to do fun things and enjoy family time because I couldn’t handle being out of bed, or the time and money went to medical procedures or tests for me. They never gave up on me, and we are so close. I will always be grateful. My best friend in college went with me to so many doctors’ appointments, stayed with me over night in the hospital, went with me to surgeries. I went through a really hard time after the second time my liver had issues, and I made some decisions that I’m not proud of and couldn’t let go of some things. Because of this, we’re not close anymore, but I will always, always be grateful for everything she did. And my best friend today, who has been my best friend since I was in 5^th grade, has been there through everything, always lending me a shoulder to cry on or an ear to vent to. She’s always listening to me, and she is the most supportive, loving friend I could ever ask for. There are so  many others that have been constantly giving and loving, as well, including the entire community in my home town, previous towns I’ve lived in, my church, my college family, and so many. I am so blessed! And now, the man that completely changed my life is the absolute most understanding man and is there for every appointment, listens to every grievance and vent session, and does whatever he can to make sure I’m ok. I’m so incredibly lucky to have him, and he makes every day better, even the really hard ones.

I know it’s such a long story, but if one person hears my story and knows they’re not going through it alone, it’s all worth it. I want people that are patients to know that even though a doctor may tell them they think it’s in their head, they have to advocate for themselves. Whether it be a heart condition, chronic pain, headaches, leg pain, etc., it’s real! And there are ways to help. Don’t start to believe it yourself. I know after so many times of hearing it and having people tell those close to me, I started to believe it of myself. But you’re your biggest supporter. Know there are others that have gone through it, too, and will be there to help. People raise support about many illnesses (as they should), but chronic pain never seems to be one of them. It’s a true illness. It almost always stems from another illness (or injury), but it is physically, mentally, and emotionally exhausting. There is research being done to help patients with chronic pain (more about that later), but until people are more aware that it exists, there will never be an answer for all the issues that lead to chronic pain. We have to fight to make sure they never stop looking for answers. And we have to support each other.

Thank you so much for taking the time to read my story. If you know of anyone that could be helped or not feel so alone by this testimony, please feel free to share. And if you’re experiencing any type of medical condition, know that you have people that love you and will do whatever to help.