Other than the brief entry I made this past February, I haven't written in over a year... Not one thing. The disease progressed so rapidly and aggressively, I began losing regular cognitive function, thus, making it damn near impossible for me to form a comprehensive thought... However, I'd started a treatment that actually showed promise. My LLMD (Lyme Literate Medical Doctor) decided that I was FINALLY ready to have a PICC line placed and administer IV Rocephin everyday... until recently. <-- (But we'll get to that tid bit later)... I slowly began to feel different... And eventually:
I began noticing things were off. Almost as if I was regressing, completely. I would repeatedly tell my mom and my beau (yep... I've also been chronically attached for over a year, as well! lol) that I couldn't help but feel the exact same way I did a year ago... confused ALL the time, making frequent ER trips, seizures multiple times a day, severe breakthrough pain, loss of my vocabulary, etc. I was petrified! Here I am, 25 years old, thinking the light at the end of the tunnel just may not be a train and all of a sudden, I'm blindsided like a deer caught in the headlights with these recurring symptoms. I was experiencing the worst case of deja vu ever!... Now, hindsight is 20/20 and knowing what I know now, I wasn't regressing! I was stressed, which caused a pretty intense Lyme flare up.
Pretty much, every other medical condition I had, outside of the Lyme Disease and it's co-infections (Babesia and Bartonella), all began to acting up, seemingly at once. I had ovarian cysts rupture, multiple times (which is such an intense pain, it will wake you out of a dead sleep and right into hell)... I began having seizures that weren't being controlled with medication... A migraine that started on a Sunday, stayed and ultimately sent me to the ER by Friday... My asthma became a serious problem... And I was experiencing severe breakthrough pain (Which proved my Pain Management Doctor to be completely incompetent as well as compassionless in terms of my disease).
And to add insult to injury, I was internalizing and ignoring the pain of my boyfriend moving over 600 miles away. I'd always knew we'd end up in a long distance relationship at some point (long story). But I damn sure didn't think it would hurt this much. This was my long lost, childhood crush turned LOVE OF MY LIFE!!! He has been there through everything, since my diagnosis. This man... MY MAN... came into my life like the sweetest dream amidst a nearly 9 year long nightmare. My best friend. My heart. A rare fucking breed! And he chose to love me?! He and I had never been more than a 30 minute drive away from one another since we've been together.... and now, it was about to change to over 10 hours!
I was on edge. And if you had just blew in my direction during this time, I was going over!
Things got even more complicated when I ended up in the hospital for over a week... Eight days to be exact... But who was counting?! lol It was a very traumatic experience, to say the least. Initially, I was rushed there, via ambulance, for a number of ailments, but what became the sole issue was severe abdominal pain. -->Now, to say, "I know my body," is an understatement. It is my JOB to listen to it, intently.<-- Well, not only was it a serious BATTLE trying to convince these people that my belly pain had nothing to do with an ovarian cyst BUT it was like being in a fucking scene from The First 48 when I told them just how much pain I was in!
Explaining that I had Late Stage Chronic Lyme Disease was impossible. I was told multiple times that I was exaggerating my pain scale, which was a 9/10 to 10/10 everyday. I went through a countless number of consultations, with doctors from nearly every department. All, stumped, but I wasn't! I kept telling my boyfriend, who stayed with me everyday :), that it was my appendix. The doctors' argument: My CAT scan results showed, and I quote, "A pristine appendix." And my white blood cell count was normal (In the event of appendicitis, the great majority of patients have an elevated WBC count). Well, I'd been on heavy duty IV antibiotics, everyday for 3 months... THEY WEREN'T GONNA BE HIGH!!!
Because of the PICC line in my left arm, all blood samples had to be taken from my right arm. Aaannndd, because I was given a medication I was allergic to, through my PICC, I developed a rash around it... which was further fucked up when a nurse called herself, "keeping a close an eye on it," cleaned it and placed a new dressing over my wet skin! I was stuck over 15 times in my right arm, NOT including the six IV's I ended up having to get. I was treated like a bother, my entire stay. I was imploding and I just wanted to go home! Fuck the fact that I KNEW there was something going awry in my body! I could be miserable at home. There was even a psychiatric consult scheduled. When I learned that, I told them I wanted to leave. Ultimately, I didn't and that consultation was cancelled the next morning. SoOoo many terrible things happened to me during my time there that I'm still not over.
It took the third and youngest hospitalist to say, "I do believe you're in pain and I'm not sending you home in this condition." She got a third surgeon to evaluate me and on the seventh day of my stay, he said he would put me on the schedule for surgery. He was concerned about the placement of my pain and AT LEAST wanted to go in and physically see what was going on. After the surgery, the pain I was in was immediately gone. But, let me tell you, Lyme and Surgery are a terrible pair! I left just one day after my appendectomy. And was told, I'd get the pathology report when I went in for my follow up appointment. The surgeon did say, however, that just by looking at it, we were dealing with an abnormal appendix and he wouldn't be surprised if the pathology report showed it was indeed infected. Well, I just had my follow up appointment, and I went through all that bullshit for them to say, I was in early stages of appendicitis.
I thought that once I got home, after the surgery, I would feel better... I got worse. Emotionally, I was a wreck! I didn't understand why I was so evil and angry. And my piece of shit LLMD couldn't care less about me if he tried, because his ass was M.I.A. during this entire ordeal. I was dealing with the unknown, on my own. This led to a pretty rough breakdown. I cried hysterically to my mum and kept saying, "This isn't me! This isn't me!" I didn't feel like myself. I was scared shitless! I thought I was back where I started when I was first diagnosed. I thought I murdered all of my relationships with my family, friends and my love. I was a broken mess. However, upon research, I learned that stress, changes in lifestyle and SURGERY were all triggers for a Lyme Disease flare up... and that was what I was going through. Understanding that made such a difference! I was relieved that all was not lost and if I just stayed still and got some rest, I would be back on the road to recovery...
Yeah, right! My WBC count had dropped dangerously low. My LLMD ordered me to discontinue the IV Rocephin (THE ONLY TREATMENT THAT WORKED) and my PICC line be removed, immediately. I wept! I understood that although the medication was showing some serious promise, it was also causing serious damage. If I so much as caught the flu, in this state, it would likely be fatal.
As of today, I am PICCless and am on no treatment for the disease. My boyfriend's bags are packed and he'll be gone in a day or two. I've cried everyday since all of this happened, September 29th. I'm petrified of what's to come. I'm praying for a miracle... That, soon, Lyme Disease will not be such a misunderstood and controversial disease. There should never be a time that I have to explain this disease, which is FAR from uncommon, to any doctor responsible for my care. I've had nightmares about my recent hospital stay. And not a once did I get so much as an "I'm sorry." or, "Ms. Davis, you were right." Not that I need the latter of the two, but you mother fuckers should acknowledge that you put me through an unnecessary hell!
And the thing that hurts the most about what's happened lately is the fact that the person I love the most is about to be so far away! He never left my side throughout this whole experience. He wiped my tears... Kissed my nose... Prayed with me and for me... Assured me that everything would be all right... Made me laugh... And loved me UNCONDITIONALLY!!! Even though we're committed to staying together, it feels like a major loss. I already miss this man with every fiber of my being... and if I didn't have Lyme, in the stage that I'm in, I'd be going with him. :(
- I wasn't in excruciating pain everyday... I mean, still in pain everyday, but not in the fetal position, screaming, in the middle of the floor, pain.
- Seizure Activity was at an all time minimum
- My balance and strength was so much better, I didn't have to use my walker anymore
- My short term memory had improved...
- ... as well as focus and comprehension...
I began noticing things were off. Almost as if I was regressing, completely. I would repeatedly tell my mom and my beau (yep... I've also been chronically attached for over a year, as well! lol) that I couldn't help but feel the exact same way I did a year ago... confused ALL the time, making frequent ER trips, seizures multiple times a day, severe breakthrough pain, loss of my vocabulary, etc. I was petrified! Here I am, 25 years old, thinking the light at the end of the tunnel just may not be a train and all of a sudden, I'm blindsided like a deer caught in the headlights with these recurring symptoms. I was experiencing the worst case of deja vu ever!... Now, hindsight is 20/20 and knowing what I know now, I wasn't regressing! I was stressed, which caused a pretty intense Lyme flare up.
Pretty much, every other medical condition I had, outside of the Lyme Disease and it's co-infections (Babesia and Bartonella), all began to acting up, seemingly at once. I had ovarian cysts rupture, multiple times (which is such an intense pain, it will wake you out of a dead sleep and right into hell)... I began having seizures that weren't being controlled with medication... A migraine that started on a Sunday, stayed and ultimately sent me to the ER by Friday... My asthma became a serious problem... And I was experiencing severe breakthrough pain (Which proved my Pain Management Doctor to be completely incompetent as well as compassionless in terms of my disease).
And to add insult to injury, I was internalizing and ignoring the pain of my boyfriend moving over 600 miles away. I'd always knew we'd end up in a long distance relationship at some point (long story). But I damn sure didn't think it would hurt this much. This was my long lost, childhood crush turned LOVE OF MY LIFE!!! He has been there through everything, since my diagnosis. This man... MY MAN... came into my life like the sweetest dream amidst a nearly 9 year long nightmare. My best friend. My heart. A rare fucking breed! And he chose to love me?! He and I had never been more than a 30 minute drive away from one another since we've been together.... and now, it was about to change to over 10 hours! I was on edge. And if you had just blew in my direction during this time, I was going over!
Things got even more complicated when I ended up in the hospital for over a week... Eight days to be exact... But who was counting?! lol It was a very traumatic experience, to say the least. Initially, I was rushed there, via ambulance, for a number of ailments, but what became the sole issue was severe abdominal pain. -->Now, to say, "I know my body," is an understatement. It is my JOB to listen to it, intently.<-- Well, not only was it a serious BATTLE trying to convince these people that my belly pain had nothing to do with an ovarian cyst BUT it was like being in a fucking scene from The First 48 when I told them just how much pain I was in!
Explaining that I had Late Stage Chronic Lyme Disease was impossible. I was told multiple times that I was exaggerating my pain scale, which was a 9/10 to 10/10 everyday. I went through a countless number of consultations, with doctors from nearly every department. All, stumped, but I wasn't! I kept telling my boyfriend, who stayed with me everyday :), that it was my appendix. The doctors' argument: My CAT scan results showed, and I quote, "A pristine appendix." And my white blood cell count was normal (In the event of appendicitis, the great majority of patients have an elevated WBC count). Well, I'd been on heavy duty IV antibiotics, everyday for 3 months... THEY WEREN'T GONNA BE HIGH!!!
Because of the PICC line in my left arm, all blood samples had to be taken from my right arm. Aaannndd, because I was given a medication I was allergic to, through my PICC, I developed a rash around it... which was further fucked up when a nurse called herself, "keeping a close an eye on it," cleaned it and placed a new dressing over my wet skin! I was stuck over 15 times in my right arm, NOT including the six IV's I ended up having to get. I was treated like a bother, my entire stay. I was imploding and I just wanted to go home! Fuck the fact that I KNEW there was something going awry in my body! I could be miserable at home. There was even a psychiatric consult scheduled. When I learned that, I told them I wanted to leave. Ultimately, I didn't and that consultation was cancelled the next morning. SoOoo many terrible things happened to me during my time there that I'm still not over.
It took the third and youngest hospitalist to say, "I do believe you're in pain and I'm not sending you home in this condition." She got a third surgeon to evaluate me and on the seventh day of my stay, he said he would put me on the schedule for surgery. He was concerned about the placement of my pain and AT LEAST wanted to go in and physically see what was going on. After the surgery, the pain I was in was immediately gone. But, let me tell you, Lyme and Surgery are a terrible pair! I left just one day after my appendectomy. And was told, I'd get the pathology report when I went in for my follow up appointment. The surgeon did say, however, that just by looking at it, we were dealing with an abnormal appendix and he wouldn't be surprised if the pathology report showed it was indeed infected. Well, I just had my follow up appointment, and I went through all that bullshit for them to say, I was in early stages of appendicitis.
I thought that once I got home, after the surgery, I would feel better... I got worse. Emotionally, I was a wreck! I didn't understand why I was so evil and angry. And my piece of shit LLMD couldn't care less about me if he tried, because his ass was M.I.A. during this entire ordeal. I was dealing with the unknown, on my own. This led to a pretty rough breakdown. I cried hysterically to my mum and kept saying, "This isn't me! This isn't me!" I didn't feel like myself. I was scared shitless! I thought I was back where I started when I was first diagnosed. I thought I murdered all of my relationships with my family, friends and my love. I was a broken mess. However, upon research, I learned that stress, changes in lifestyle and SURGERY were all triggers for a Lyme Disease flare up... and that was what I was going through. Understanding that made such a difference! I was relieved that all was not lost and if I just stayed still and got some rest, I would be back on the road to recovery...
Yeah, right! My WBC count had dropped dangerously low. My LLMD ordered me to discontinue the IV Rocephin (THE ONLY TREATMENT THAT WORKED) and my PICC line be removed, immediately. I wept! I understood that although the medication was showing some serious promise, it was also causing serious damage. If I so much as caught the flu, in this state, it would likely be fatal.
As of today, I am PICCless and am on no treatment for the disease. My boyfriend's bags are packed and he'll be gone in a day or two. I've cried everyday since all of this happened, September 29th. I'm petrified of what's to come. I'm praying for a miracle... That, soon, Lyme Disease will not be such a misunderstood and controversial disease. There should never be a time that I have to explain this disease, which is FAR from uncommon, to any doctor responsible for my care. I've had nightmares about my recent hospital stay. And not a once did I get so much as an "I'm sorry." or, "Ms. Davis, you were right." Not that I need the latter of the two, but you mother fuckers should acknowledge that you put me through an unnecessary hell!
And the thing that hurts the most about what's happened lately is the fact that the person I love the most is about to be so far away! He never left my side throughout this whole experience. He wiped my tears... Kissed my nose... Prayed with me and for me... Assured me that everything would be all right... Made me laugh... And loved me UNCONDITIONALLY!!! Even though we're committed to staying together, it feels like a major loss. I already miss this man with every fiber of my being... and if I didn't have Lyme, in the stage that I'm in, I'd be going with him. :(
I am so sorry....and YOU are so strong!
ReplyDeleteThank you so much for reading, PCYT, and ESPECIALLY for your kind words!💚
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