People with rare diseases at generally referred to as zebras. In medical school, doctors are trained that when you hear hoofbeats, think horses, not zebras. This means that you should consider all the more likely causes before jumping to a rarer diagnosis. However, there are some people in this world for which the title of zebra still doesn't work. I am not proud of it, but it is the truth.
I am a unicorn. Now, I more than likely have a variant of stiff person syndrome (SPS) that is not yet named, but has the components of several of the named variants. While there is a recognized spectrum, there is really only one true name for all conditions on the spectrum, which as you can imagine, can make things difficult to name/identify.
For me, my SPS is pediatric onset with antibodies against GAD65 and amiphyphisin in serum and CSF. Less than 5% of cases have antibodies against amphyphisin, which generally suggests the presence of some kind of cancer, usually of the chest, which I also don't have. About 60% of all SPS cases have antibodies against GAD65, while about 40% will be diagnosed without the presence of GAD65.
Pediatric onset, antibodies associated with cancer (without the cancer), antibodies in both serum and CSF. Yep, totally a unicorn now. I have yet to find a case study of someone like me and I've been scouring medical school databases and literature for a while now. I know other people have been looking as well.
So while there aren't many out there, it is important to acknowledge that these so-called medical unicorns do exist and they struggle with their health just as much and maybe even more than zebras due to a lack of proper knowledge and medical treatments available.
The last couple of days, I have had the opportunity to do some serious reflecting on my journey and everything that has gotten me to this point. The first thing I have to say is, I'm grateful. Grateful for the family that has stood beside me unconditionally. Loved me unconditionally. Grateful for the endless support of friends and the support of their friends, etc. I know that my story has traveled all over the world at this point via Facebook, The Mighty, my blog, and more. Grateful for the doctors that helped me get through each day and worked to give me the best quality of life possible and yes, I'm even grateful for the doctors that epically messed up, because without them, I wouldn't have as much meaning and purpose in my life. My entire senior thesis in communication is going to be on rare diseases and the process that patients go through to get a diagnosis. But it wouldn't have gotten to this point, without all the epic failures and mistakes. In some small way, each of those failures, nasty comments, and unrevealing tests, has helped to mold me into the person I am today. I'm stronger because of it all. Less naive to some of the world's problems. More willing to listen and help when I can. More open-minded. Less critical of others (usually, I'm still working on that!). Grateful to everyone that has gotten me to today, April 30, 2017. All the professors and teachers, all the other medical personnel, all the people that have prayed for me that I don't even know exist (and I know that they are out there!), all my academic advisors... Simply put, everyone. Everyone has a place in this battle I call my life.
I'm also angry. There is still a vaccine out there that is still being given to young people each and every day, and plunging perfectly healthy individuals into the battle for their lives. And for what? The efficacy of the HPV vaccine is in serious question and the risks (in my eyes) do not outweigh the benefits; not by a long shot.
The devices that have been used to keep me alive and thriving to this point, my cochlear implants, feeding tubes, my trusty port (near and dear to my heart literally), ventilators, countless IV pumps, and the list goes on, aren't available everywhere in this world and it would be naïve to think otherwise. Yet, that same vaccine that was shoved on me five years ago, is getting shoved on children in third world countries who could only dream of the medical care that we have available in the United States.
It has been a long road to get me to today, April 30th, 2017, exactly 4 years since my first brush with death and nearly 5 years since the vaccine that turned my young life on its head. Dreams were shattered that day and new ones constructed in its place. Hearts were broken and repaired in the same 30 seconds. Oxygen was deprived from the same body that yearned and fought to stay alive. Just barely, but alive.
I'm actually not even sure what this piece is supposed to be about at this point, but I had some important points to make and I'll publish this post the same way I've published so many others. Trusting that it will find its way into the hands of an individual that can do something with the struggle and make it something bigger.
There is currently one final standing between me and officially being considered a junior in college. Chronic illness have pushed me a semester behind everyone else my age, but with my summer classes and the fall semester, I'll be a senior in December 2017. Pretty exciting stuff if you ask me. It's not been an easy road.
As I'm preparing for the last final of the term and the beginning of the summer term, I wanted to review the last 32 weeks. My year started out with a designation to the Green Team and an early move-in to 222 Ruskin Hall. It was a single and fully ADA compliant. Just perfect! My mom, dad, aunt, uncle and I spent hours moving me in, cleaning, and decorating.
I served my Green Team assignment and I had blast for the third consecutive year. It's become a bit of a tradition for me at the start of each academic year.
Eventually classes started and I loved each and every one of them! The difficulty was just right.
The following week, my cousin came into town and she cooked for me in my new apartment, with all my new stuff. Everyone swore that I would be eating out every single night, because I stink at cooking, nor do I have a desire to do so. Well, guess what?! I cooked 98% of the time and I got the occasional Chik-fil-a from the Cathedral Cafe. Not too bad for someone that is clueless in the kitchen!
Then, Labor Day weekend came and went. The day after Labor Day, I got up for my 10AM Mass Communication Process class when I went to put on my cochlear implants. My right cochlear implant sounded... funny. I couldn't really explain it, but being late for class, I didn't give it much thought. As the day went on, the sound got worse and by the time I got to my taekwondo class at 8:15 that night, I couldn't hear anything out of that ear. I thought it was just a processor issue, so I pushed it out of my mind until I could swap around pieces. But after swapping around pieces and processors, I realized this wasn't just a small external problem. I emailed my cochlear implant audiologist who told me to come in. She quickly realized that this wasn't a small problem either and contacted the surgeon and a representative from the company.
Life went on while they tried to figure out my implant issues. I ended up getting my wisdom teeth out on October 28th, which triggered a massive CRPS flare that got me admitted. Then November 12th, I competed at a regional taekwondo tournament in Cleveland, Ohio where I finished very strong. Two days later, I was back in the wheelchair and forced to reconfigure my material for my 2nd Degree Black Belt-Recommended test.
School continued and I made a 4.0 for the semester and got on the Dean's List for the first time ever. That evening, I tested and passed my 2nd Degree Black Belt-Recommended Testing, which was exciting.
Winter break flew by, and before I knew it, it was already time to head back to school. I got some good classes and a good schedule, but I was worried about my ability to do well in some of them. The professors were intense and the lecture styles very different. But I persevered, and around midterms, things started to look up.
I was scheduled to get my cochlear implant explanted and reimplanted on April 5th, 2017; a day that I looked forward to and dreaded all at the same time.
In the middle of January, my muscle spasms took a turn for the worst and I knew I had to do something and soon. I started calling doctors all over the country until I found some that would take me on as a patient. That led to several trips to Cleveland to University Hospitals, a trip to Stratford, NJ to Rowan University Medical Center, and to some doctors in Pittsburgh. I juggled all of that in addition to school, work, and taekwondo training for my 2nd Degree Black Belt-Decided training.
Kept making good grades and finally, the cochlear implant surgery rolled around. The surgery was easy, but the recovery was a nightmare. A few weeks passed and I took 4/5 finals and passed my 2nd Degree Black Belt-Decided testing and was admitted to the hospital for IVIG where I am currently today. I have one more final to take May 1st or 2nd, but I currently have a 4.0 going into that final. I'm hoping to stay on the Dean's List this semester.
It's been a long and hard year, but I've had the opportunity to prove to myself that despite my health, I can still accomplish my goals and do well in school.
So Farewell Ruskin 222 and Ruskin 211, I'll see you in the fall when I come back on the Green Team!
My recent cochlear implant explantation and re-implantation was rough to say the least. To control my pain, I was put on a ketamine PCA. Ketamine has a known side effect of hallucinations. When someone walked in the door with a gigantic teddy bear, I thought I was hallucinating.
As it turns out, I wasn't. My brother actually bought me a bear that was almost as big as me.
While the bear was a nice touch, the letter he wrote for me even more.
Dear Strongest Meg,
"The toughest battles are always fought by the strongest warriors." That is exactly what you are, a warrior. You face adversity on a level that people can't even begin to fathom, yet you do it with a smile on your face. You have this beautiful gift of finding the good even when facing hardships. There are only a few people in my life who I genuinely look up to and you are at the top of the list. No matter what you're going through, you are still able to do extremely well in school, work, compete in Taekwondo competitions, volunteer and a whole other list of things you're involved with. You made me want to apply to Pitt because I wanted to be like you and when I got in I was so incredibly happy. I felt like I had finally accomplished something great! In these coming years I will definitely always have you as my inspiration when I struggle through hard times in college. I'll think to myself: What would Meghan do? You helped me to realize what my purpose is. And that purpose to is help others and give them the courage, strength and perseverance you have always had. You're the strongest person I know and I know you are going to do so much good in the world.(you are already making a difference, but I digress.) Always know that I am here for you any hour of the day, week, month, year, decade. Forever. Thank you for believing in me when I had lost faith in myself. Without you I am not sure who I would be.
Much love from yours truly,
I mean who wouldn't bawl after reading that?! I surely did!
Ok, I'm just going to start writing what I'm feeling and I'm not going to stop. Consider this my current stream of thoughts, typos and all. This is really long and depressing in some points, but I try to go for transparency and showing the real deal. So here it goes...
I'm trying to prepare to enter the workforce upon graduation from college in the Fall of 2018. I have a good GPA and I'll likely end up with a 4.0 this semester and on the Dean's List. I'm planning on taking 15 credits over the summer term and I'm really excited for the majority of the courses. Except Introduction to Logic, not particularly excited for that, but hey, general education courses have to get done right? I have current goals of getting into the Communication Honor Society and Phi Beta Kappa, which is one of the most prestigious academic honor societies in the United States and I want to get the highest GPA I can. (Read: Do my very best all the time.) Graduate with my two majors, a minor, certificate, and a related area in linguistics. So school is all cool right now.
Moving on to taekwondo, I am coming up on a milestone testing for my 2nd Degree Black Belt-Decided. I am super excited to test. I am expecting 4 PA State Champion titles for my division and I dream of competing at the Northeast District Championships. I've had the incredible ability to judge at tournaments and become an instructor. There are some aspects of my training that are driving me up the wall and I'm trying to address those appropriately. That's a story for another time.
As for my job, I love it. Nothing gives me more pleasure than watching my students set, reach, and surpass their goals, learn and practice valuable life skills, and become physically strong and confident individuals.
Then, I have Finn to train, but he makes me so happy. I wish I could see or train with him more. Months ago, the thought of a service dog was such a major source of anxiety. "Is this for me?" "What if someone else needs him more?" "What if I screw him up? People have worked so hard to make him amazing just for me." Now, I'm afraid of him forgetting everything he's learned because I haven't gotten to spend real time training with him yet. I also enjoy helping out with AB Canine. It keeps me distracted and I get to spend time around all the dogs I could ever want. I'm still questioning whether I should keep helping, because my family is so invested in it and I don't want business to strain my personal relationships with the family the way it is. The last 5 years, I have managed to spoil every good thing I've ever had. PDM, Student EMS, ski patrol, taekwondo, school, the list goes on, but I've spoiled literally everything and got hurt because I gave 110% of myself and my efforts. Every. Single. Time.
Now, let's throw some gas on those fires and bring my dysfunctional body and health into play. I spend a lot of time waiting. Waiting for doctors. Waiting to fall asleep at night. Waiting for the medications to kick in. Waiting until I can get a desperately needed nap. Waiting for lab results. Waiting for appointments. Waiting for a diagnosis. Waiting for a treatment. Waiting for the custom wheelchair that keep me going. Waiting for my cochlear implant to be re-activated. Waiting, waiting, waiting... I usually don't tell people when I'm at my worst and I like it better that way. It means I don't get constantly criticized for complaining, which let's face it, no one likes someone that complains all the time, even for legitimate reasons.
After my last surgery, I did a horrible, horrible job of hiding how bad things actually are right now. I cried. I whined. I complained. I did a lot of thinking out loud, which I never should have done. My CRPS and Otto were kicking my butt, but I should have been able to control it. Be stronger than it. Pain is a mental game and I lost terribly after the surgery. I feel awful about not being the strong, happy, always smiling person that I am expected to be. I get an earful about it when I'm not strong enough. Sometimes it is explicit and sometimes it is implied in the comments of others. The guilt is through the roof for me. It was a solid 20 hours of wishing someone, anyone would help. The attending on the chronic pain service refused to allow the nurse to see me. Obviously, my wellbeing is not worth enough to them. What a great morale and self-esteem booster...
As a result, I can't get the treatment that gives me the best shot of stopping the progression the symptoms of Otto. I failed. I am failing. Bad.
Yes, I am a full-time student. Yes, I do taekwondo. Yes, I have a part time job teaching taekwondo that I love. Yes, I'm currently working on training my service dog, Finn and yes, I'm trying (and failing pretty miserably) at managing the only thing that is strong enough to kick my butt, which is my body. I still have to face the same world as everyone in 2 years. You sink or swim. The real world isn't always nice and accommodating and I don't expect, nor do I want, special treatment. After graduation, I'll need the education, life experiences, and finances to succeed on my own. Society has conditioned, not only me, but my entire generation, that this is what we have to do. It seems like a lot, but without my health, it is really typical college kid stuff. Poor health is not an excuse in the real world. It just isn't.
I've walked several sections of this journey by myself. I've cried myself to sleep, because no one, including my parents, believed my symptoms and that I couldn't control them. Let me tell you, that is a lonely, lonely place to be. I've cried myself to sleep in the hospital after my parents left because they couldn't deal with me anymore. It's always my fault. My fault that I got sick over a stupid vaccine. My fault that my health is totally screwed up. My fault that dysautonomia makes me pass out for no reason. My fault that dang antibodies are attacking things they shouldn't be. My fault that my CRPS spread everywhere. My fault that I'm hypersensitive to painkillers and that they've almost killed me. And according to one of my doctors, my fault that I had status epilepticus, hypercapnia, a coma, and metabolic encephalopathy, and more due to a "conversion reaction" that I "should have been able to control". Yep, this is all totally my fault! I know I forgot a few examples. Just let me know and I'll add them to the list.
I try so hard to keep life as "normal" for myself and other as possible. Sometimes I just epically fail; some worse than others.
In the meantime, I'm still here... Waiting for someone to toss me a rope so I can climb out of this black hole. Waiting, waiting, waiting...
Mass Media Representation of Healthcare Environments: An Academic Analysis of "Patch Adams" and "Awakenings"
This is an academic paper I wrote in the Summer of 2015 for a Sociology of Health and Illness class. I recently came across it and I saw some good points. I would like to revisit it, sometime in the future and continue my research.
University of Pittsburgh
Sociology of Health and Illness
Summer 2015 Term Paper
RUNNING HEADER: MASS MEDIA REPRESENTATION OF HEALTHCARE ENVIRONMENTS 1
In today's world, mass media has a very powerful effect on humans. Too many people start to believe everything they hear whether there is any truth in the portrayal or not. Also, many forms of mass media are "twisted" to help further prove a point, whether the facts are accurate or not. Over the years, Hollywood has given us some very precise depictions of the workers in the health care setting and some not so accurate. Two such films provide some example of both representation and misrepresentation of employees and relationships in the health care system.
Patch Adams is the light-hearted film featuring Robin Williams as Hunter "Patch" Adams. A patient at a mental institution after attempting to commit suicide, Patch applies to medical school where his strong interpersonal communication skills and genuine care for the patients threaten to be corrupted by the iron-fisted influence of the dean of the medical school. While his methods for cheering up the patients are considered illegal, they did not mind as they were in an overall better mood and needed to take less pain medication.
Based on Oliver Sacks' memoir, Awakenings is another movie featuring Robin Williams, but this time, the environment is much more severe. When an outbreak of encephalitis lethargica sweeps across the United States from 1917-1928, many people quickly died. For those that survived, they were left profoundly disabled by the infection. The disease left them in a catatonic state, and for many years, doctors and scientists were unsure of how to retrain the brain to communicate with its environment. In 1969, Dr. Malcolm Sayer administered a new type of drug known as L-Dopa, which allowed these patients to come out of their catatonic states. The end of the film shows how many of these patients are then forced to live with new lives, after decades of lives vanished before their eyes.
On Patch Adams' first day of medical school, the Dean gives the following speech: "Doctors are powerful. Do no harm, because you can do harm. A patient will come to you at his moment of greatest dread, hand you a knife, and say ‘Doctor, cut me open.' Why? Because he trusts you." (Patch Adams, 1998) This quote reflects the medical dominance enjoyed by many physicians. When the movie was filmed in the last 1990s, governmental control of health care was much less than it is today. Despite the change in the authorities of health care, many patients still trust doctors all the same. Doctors tend to thrive on that confidence; as seen in both films, the attending physicians act like they are superior to everyone else. Mainly the power gets to their heads. While this is not the case for every medical practitioner, many physicians possess the qualities and personalities that would make this an accurate generalization.
Another important aspect of working in a health care environment is the importance of emotional detachment. At the start of their medical education, most are aspiring physicians because they want to make a difference in someone's life. However, by the end of residency, many doctors have lost touch with their interpersonal communication skills. This is because "medical culture values and rewards ‘strength' and equates emotional involvement with weakness." (Weitz, 2013) The emotional detachment shown in both Patch Adams and Awakenings was overly dramatic. In Patch Adams, it would never be permitted for a physician to interact with patients in such a laid back manner. He also spent a lot of time creating elaborate plans to entertain the patients. Adams always asked the patient's name and how they were doing; a violation of the unwritten medical codes and values. Likewise, Dr. Sayer became so emotionally attached to the patients he was trying to treat, that he essentially could not function as an ordinary person. He was consumed with an attempt to cure these patients to return them to a normal life. When a patient experienced something good, it was a win for him, and when they suffered defeat, it was a loss for him. Dr. Sayer became one with his patients, and it ultimately caused him to lose his objectivity.
Ethnicity, race, gender, age, and class all influence the medical field. For physicians, in particular, male non-Hispanic whites from middle and upper classes are most likely to graduate with their medical degree. (Weitz, 2013) Any deviation from this "ideal student" would make obtaining a degree much more challenging. In Patch's medical school class, there were eight girls out of 160. Therefore, those women had to perform to a much higher level to be considered just as good as one of the men. Being a non-traditional, 30-some-year-old student, Patch also faced significant adversity on his road to obtaining a medical degree. In medicine, if you do not fit a particular group of criteria, you are considered much less likely to succeed. Although this is quite unfair, it is the harsh reality.
As time wears on, the doctor-patient relationship is rapidly changing. Rather than the physician making all of the decisions (except in situations in which the patient may be incapacitated), doctors and patients are now working as a team to develop the best treatment plans. "Today's patient role is more often chronic versus acute; is based on the risk of disease rather than existing illness; and requires more active engagement by the patient in monitoring, self-educating, and self-treating over time rather than just seeking treatment from a provider on a one-time basis." (Weitz, 2013) As illnesses shift from primarily acute illnesses to more chronic problems, this is becoming more and more evident. Because his patients are incapacitated by encephalitis lethargica, Dr. Sayer is forced to make the decisions regarding treatment, whereas a person with chronic lung disease may help to develop a treatment plan with their physician.
The media likes to dramatize medical situations for entertainment purposes, but in the process, many medical aspects are misrepresented. When the media is attempting to make a point to support their argument or agenda, the reality may also be misconstrued. On the other hand, Hollywood has given us some excellent and accurate portrayals of the health care setting. While overdramatizing and misrepresenting the medical environment is not ideal, it is not unusual to see.
Marshall, P. (Director), Parkes, W. F., & Lasker, L. (Producers), & Zaillian, S. (Screenwriter). (1990). Awakenings [Motion picture on DVD]. United States of America: Columbia Pictures.
Shadyac, T. P. (Director), Mylander, M. (Writer), & Oedekerk, S. (Screenwriter). (1998). Patch Adams [Motion picture on DVD]. United States of America: Universal Pictures.
Weitz, Rose. The Sociology of Health, Illness and Health Care. 6th ed. Boston: Cengage Learning, 2013. N. pag. Print.
"If you every find yourself in the middle of the dark and you can't see, I'll be the light to guide you."
Update on this morning's neuroimmunology appointment at University Hospital Main Medical Center. It went very well. 25th neurologist is the charm I suppose! The doctor and resident both were fantastic, listened carefully, asked great questions, and spent a good deal of time with us. He also concurred that I have an rare undetermined variant, likely related to the SPS. We know that "Otto" is neurological and autoimmune in nature.
He said he's never seen a pediatric onset case of SPS, nor a case a crazy as mine. Go figure. He was looking at the antibody levels in complete disbelief. I think he was expecting like a false positive, or any ever so slight elevation. He said it isn't a classic case, focal stiff limb, jerking limb, and my CT scan is not consistent with PERM, as I've only had encephalopathy once due to a physician error. That about covers the known variants of SPS.
My Key Points in my Case
-No half decent fit into a variant
-GAD65 and 14 other paraneoplastic antibodies (without detectable cancer) in the blood AND CSF
-No response to oral medications/benzos, but respond to IV diazepam
-No other conditions to explain the GAD and the other antibodies other than SPS or a form of cancer
Pretty humbling hearing that from someone who has treated several patients across the spectrum. I hope someone writes a case report on me to help other undiagnosed patients and the physicians treating them.
Regardless, the treatment is the same. I'm still digesting it and my parents and I have a lot of things to consider in coming weeks.
First line treatment is muscle relaxers and high dose benzos (which I failed), high dose steroids (also failed), PT (not possible with my feet contracted at the moment), IVIG (second line treatment) which worked for a while and then stopped, plasmapheresis (also a second line treatment), rituxmab (an immunosuppressant that destroyed the "factories" where the bad antibodies are made, would be third line, chemo agent would be fourth line wipe out my immune system.
The UH Cleveland neurologist I saw today and the NJ neurologist from a few weeks ago each agreed to work with a Pittsburgh neurologist to actually do the treatments, in a large part because of insurance constraints. I have two amazing neurologists and I really hope that the local neuro is willing to work with them!
Here's the limbo part. I need bilateral Vortex ports to do plasmapheresis. However, after my scary reaction to the trauma to my body was plain dangerous and I couldn't get someone to help for 14-16 hours. But, plasmapheresis works arguably 6 times faster than IV with no side effects.
Because IVIG wore off, some my neurologists are not overwhelmingly positive to work again, or so they say.
They both have their pros and cons. I'm personally not a fan of having to wait at least an additional 6 months in the wheelchair. I'm tired of all of this and I just want to move on with my life and flat feet.
I know what I want, but if my parents aren't on board, I can't go against my parents especially because they are insuring me. Therefore, I'm torn, frustrated, and wondering why UPMC neurologists are incapable of staying in communication with their patients. I do not trust this UPMC neurologist as much as I really need to, but what are my options? I need treatment, in state, in network to get it covered.
That's enough from me for now. I wish I knew what I am up against, but I haven't found any other "unicorns" like me in case studies. According to the doctors, they don't exist.
I really do feel like I'm on an island by myself. No case reports similar to me, doctors guessing, and the lack of agreement regarding treatment for me within the family. I feel like I should get to make the decision after the doctors present the options to me, but I'm not. I guess no one will understand me and my logic, expect for someone like me.
For years, I fought my parents on the prospect of getting a service dog. I just plain didn't want on. In October 2016, I went to SCI Forest (a prison near Clarion), to speak with inmates on the challenges that individuals with disabilities face. What I didn't expect was that one of the dogs in the training program would completely steal my heart. ❤️ We connected immediately in a way I've never connected with a dog. I just can't explain it. He was so responsive to me, loving, and a hard worker, the ironic thing being that he is not crazy about women for some reason.
During the time in the prison program, I had extremely limited time to work with Finn, as the 2 hour drive to the jail and the clearances take time. Because cameras aren't allowed in prisons, I couldn't get any pictures of Finn for months.
On April 5th, 2017, my 22 month German Shepherd, Finn, graduated from the initial training and he can already do so much. He was trained by the inmate trainers on everything from basic obedience, mobility assistance tasks like retrieving dropped objects, walking along side my wheelchair, and helping to stabilize me if I fall. Eventually, he will be able to alert me to fire alarms and my alarm clock. I'm so excited to continue working with him.
I would like to thank the inmates in the PAWS Program, as well as my cousin, for training Finn. As an Administration of Justice minor, I have never truly believed in inmate rehabilitation, but after my experiences with the inmates I've worked with, rehabilitation is possible with the right help and support. Well, those inmates have been incredible! I found out while I was in the hospital that the inmates all pitched in some money to buy this awesome camo service dog harness. When I saw it, I told my mom that I one just like that. What I didn't know is that all the guys chipped in to buy the harness FOR me! I am so touched by the gesture and it restores my faith in humanity!
We have a broken criminal justice system in our country and many insufficient and ineffective programs, but more programs like this one could help to change the lives and perspective some of our nation's 2.2 million inmates and change the lives of the people they help by training service dogs.
For the first time tonight, I worked and played with Finn outside the confines of steel double doors and I'm excited to see where this journey will take us!
April 5th, 2017, I went in for a surgery, which was to be an outpatient, very successful and smooth surgery technically. When I woke up, I was hit with horrible pains from my Complex Regional Pain Syndrome (CRPS) and spasms from my super rare disorder, Stiff Person Syndrome (SPS). I can't say I didn't see that coming though. However, my medical team will ill-prepared to deal with my complex needs.
The best part was that my head, which was the area they cut open and drilled into, didn't even hurt. Oh the irony! Afterwards, I got X-rays taken to confirm everything went well and all was good. They got me up to my inpatient room and I was ok for a few hours. Not pain free, but it was manageable. At about 7:30 that night, the wall of CRPS pain and SPS spasms hit me like a Mack truck. I sobbed and sobbed as I shook and spasmed all night. They did give me oxycodone which I turned down because it doesn't work for CRPS nerve pain. The nurse and charge nurse were baffled and felt so horrible as I shook and spasmed for hours, sweating so badly the bed was soaked, struggling to breathe due to pain and diaphragmatic spasms, as my heart rate soared to 170s and my blood pressure dropped. This continued for about 14 hours, because the doctors didn't know how to deal with my rare conditions. Eventually, one of my old doctors was permitted to step in and help me out. He prescribed the medications I needed, at the dosages I needed them at, and got my custom compounded medicines approved. I quickly started to stabilize. However, in the process, he put his job on the line to help me, to give me a standard treatment, because saving me was more important than what the hospital administration thought.
You see, the hospital administration doesn't let him treat chronic pain patients at all, because one of this most successfully used treatments wasn't profitable enough for the hospital. Therefore, over 700 patients with rare and chronic illnesses were left to fend for themselves. Over 700 kids and young adults don't have access to life saving treatment because it doesn't make enough money? I get that money is important, but what is the purpose of a hospital if they can't help their patients?
I ended up having to stay a total of 6 days after my "outpatient surgery", but it would have been much worse if the doctor hadn't gambled his job and helped me. Simply by being my doctor, he could have lost his job. But, of all those doctors in that giant world-renown children's hospital, only he could and would help me out. Why must doctors that are only trying to act in the best interests of their patients have to risk not having a job, because they were the one individual that could help the patient or save their life?
While this is my experience (and one I've had many times before at a variety of hospitals), this is not an isolated problem to my local hospital. Brilliant and well-respected doctors trying to help their patients have their jobs threatened each time, they agree to help rare disease patients. This is NOT ok and more awareness needs to be bought to the issue! Alone, we are rare, but together, we are many!
April 11th, 2017
We arrived here in Cleveland shortly after midnight, checked into the hotel, collected our stuff and walked/rolled as fast as we could up to our rooms and beds. We are all exhausted after the drive. It's an easy 2.5 hour drive from Pittsburgh, but after all a long busy day, the drive seems even longer.
We are staying at this spectacular Hyatt abou 6.8 miles from Case Western's Main Hospital and while it was the cheapest hotel option, I'm not sure I've ever been in such a grand hotel. It's indescribable actually and it is close to the hospital where my pain management doctor practices at UH Ahuja. I definitely wouldn't mind staying here again!
Anyway, short update. We've arrived and the appointment is bright and early at 8AM. Stay tuned for the updates from my 25th neurologist in 5 years! Prayers and positive thoughts would be appreciated!