What happened in the last 24 hours I hope to never in my life experience again. My mom found me on the cold tile floor of my bathroom curled up as tightly as I could be crying in pain and herxing. My skin burned from the fever and the tears felt like ice as they streamed down my face. Explosion felt like the only way out.
Let’s rewind. This was my off week from dosing. I was well prepared for a week of relief. Monday was a rainy day which always makes me ache more, but despite that I felt pretty good. I spent the day in bed watching movies and relaxing. For once it was my choice to be in bed, a pleasure I have not enjoyed in such a long time. I had made lunch plans with friends for Wednesday and Friday. I had reached out and so had some friends I haven’t heard from in a long time. I was excited to get out of the house, to catch up on the “real” world and generally get to enjoy myself. And then the Devil seeped in.
Monday evening I started feeling pain again and generally feeling bad. I thought everything was “normal” for me. Things continued to get worse. I developed pain in my kidneys. I have been lucky enough to be 31 years old and never have a kidney infection, bladder infection or a urinary tract infection, but I knew something was going on, something more than usual. I was so debilitated with the pain, that I actually asked my mom to stay home with me on Tuesday because I knew I was incapable of taking care of myself. My mom ended up having to stay home with me on Wednesday as well. The kidney pain continued to intensify. Then after emptying my bladder I felt a burning sensation and searing pain. I made an appointment with my primary care provider. My urine came back negative for any signs of infection, but my CNRP wanted a culture of my urine. She put me on a preventive antibiotic that would treat an infection (being proactive) and gave me some pain medication to help with the pain (which was believed to unrelated to my disease.) I was to go for an ultrasound of my liver, kidneys and spleen, which I had done Friday and am still awaiting the results on. My mom returned to work on Thursday on the condition of having people come check on me. The pain meds did seem to help some. I called my best friend Kara, who came over in the morning. (Side note here – Kara has been one of my biggest strongholds and supporters for me. She is an absolutely amazing friend and I am blessed to have her in my life.) My Uncle came in the afternoon on Thursday to check on me and fix the hole that still remained in my ceiling because a friend let me down again. Friday my Aunt took me for my test and afterwards she treated me to breakfast and I actually ate. I hardly eat these days due to the fact that my liver and spleen still remained enlarged and press in on my stomach and due to the disease I develop lumps in my abdomen that range from the size of a gumball to the size of a baseball. I started to feel a little better. I enjoyed a talk with my Aunt and was up most of the day. Even though I felt horrible, I was bound and determined to get some joy out of the week.
Yesterday morning my mom and I had a conversation. I was extremely upset that I could not go to my cousin’s open house. I wanted to be a part of the family, to tell Jake how proud I was of him, how much I loved and missed him and I wanted to personally thank some people for donating money towards my treatment. My emotions kicked in and I got to a point where I literally could not stand up straight or even speak clearly. I couldn’t get out what was trapped in my head. I could hear the wrong words coming out of my mouth and had no control to stop them or correct them. I figured the best thing to do was take my Ativan, crawl in bed and sleep till I could find clarity. I laid down in bed. The room was spinning, I felt like I could vomit. I tried to put one foot on the floor (advice for a hangover) to try to help with no avail. Finally I passed out. I woke up drenched from “night” sweats to take my mid days meds and went right back to sleep. I slept for several hours and was woken up from the death screaming inside me.
I am the suffer in silence type. Leave me to myself and I will deal with it alone. I’ve been that was as long as I can remember. I started vomiting but the only thing I had consumed at all that day was my smoothie at 9am and after that came up, it was just bile and saliva.
I am the Queen of Vomiting. I can vomit pretty much on command. I binged and purged in high school on and off as needed to control my weight. I did serious damage. What 18 year old has a Hiatal Hernia and bleeding stomach ulcer?! I used my skills throughout my early 20s and my drinking days. I hated being drunk, I didn’t like not being in control and I hung out with very heavy drinkers. It was never that I couldn’t stand up and say no, I just got tired of it and I became the master of wasting alcohol. I would nurse one or 2 drinks most nights. (I’m not saying that I’m a saint and have never been drunk, but I can count on 1 hand the number of times that’s happened.) Shots and more drinks always ended up in front of me. So I would take my drink to the bathroom and pour half of it down the toilet, or drop it in a trash can when no one was paying attention. But the shots I couldn’t get out of. So I downed them like a pro (I guess its the Irish in me) and then proceeded to the bathroom to throw them up. Addiction hits too close to home for me and I didn’t ever want to go down that road. I also have an allergy to sulfa and with most alcohol containing sulfites I was always having a mild reaction. I know I have done severe damage to my insides from all of the vomiting. Its my go to. I over ate and I could get rid of it. When I was nauseated I didn’t fight it like most people, I just got rid of it. My system became so used to it that I lost control of it. IT HAS NOT BEEN INTENTIONAL FOR YEARS.
So when I got sick yesterday, vomiting came easily. I thought once I vomit I’ll feel better. I was wrong. It triggered my herxing. My stomach started contracting involuntarily. My back and kidney pain went from a 5 to an 11 on the pain scale. I started burping uncontrollably. Full body herx followed. My mom heard me crying, walked into the bathroom and found me.
The full body herx didn’t last long and I was able to move to the bed. My mom used every tool in her arsenal (massage, pressure points, pain relief cream from my bursitis, calming techniques) and still no relief. We checked possible side effects and reactions on every medicine I was on. All I could do was wait it out. For hours symptoms came in waves of severity. My mom laid in bed with me and tried to comfort me. What I went through was the worst physical pain I have ever endured. When I was stable enough, my mom went to bed with the promise from me that if things got worse to make her aware. I was up till 5 am. There were times I should have gotten her, when I was having severe chest pain, when I nearly passed out going to the bathroom. I broke my promise. I just knew there was nothing she could do. (I had passed out earlier in the day.)
After finally obtaining 4 hours of sleep I was doing a little better. Today my stomach is still in knots and I’m fighting to keep any food or beverage inside of me. I took a detox bath. I know I’m dehydrated. I should do a bag of lactated ringers. I did one yesterday but it didn’t help.
My theory on this…my body can simply NOT handle and process all of the toxins inside my body. My body is telling me its had enough and I’m pushing it to keep going because I have to. The only way out of this is to keep fighting. If I back off, I’m still going to be sick and things will still continue as the are. I have to be stronger than this. I have to find my focus again and keep going. I have to persevere. I have to win.
If you’re reading this please remember that you are ALWAYS stronger than you think you are. It is our instinct to survive but it is your decision to win and to conquer. As my mind raced last night and my body in unbearable pain, I thought of suicide and that its NOT an option for me. I am blessed with a strong will. Some people are not and for them my heart bleeds. I completely understand and comprehend why Lyme (tick borne infections as well) has such a high suicide rate. This disease can take you places you never imagined possible.
I wanted everyone to see me last night. I wanted non believers and insurance companies and the CDC and the NIH and all my fair weather friends to see me. The disease was visible. I wanted to dare them to tell me that what I feel is not real. I wanted them to stand there and watch my mom’s face when she couldn’t help her own child. I wanted them to see my test results. I wanted to scream! I wanted to stand in front Congress and tell them my story as just example, and force them to help the over half million people infected! I wanted them to see the thousands lost to this disease and to see the death inside of me.
I know that I woke up today alive and in better condition. This entry has taken hours. My brain is still not right, I’m still sick and my hands tremor as I type. I had to get all of this out. I hope someone out there will read this and think of me in their darkest moments and know that they will be ok one day. One day at a time and when you need it one minute at a time.
I’m not one to ask for charity but if you can please visit http//www.gofundme.com/LadyLymestorm
and share my campaign.
You sound like a very strong person. I hate to hear you had to go through that. Stay strong. 🙂
Thank you for your post. It is important for people to see the dark side of TBD. I will keep you in my thoughts and prayers.