To the doctor that doesn't feel like he is doing enough for me,
Thank you for seeing me as a human. Many doctors can't see past my medical record number. I've found that is it rare to find a doctor that is committed to improving my quality of life. Living with multiple painful conditions is very tiring and exceedingly hard to treat as well. At this time, there are no cure for any of my conditions, so we simply do our best with symptomatic treatment.
When I was first plunged into the world of chronic pain and illness at 16, you were the first doctor that I saw. You recognized the complexity and abnormality of my case, but it didn't scare you away immediately. You prescribed me some anti-seizure medication and did a nerve block on me. The relief from the nerve block was so short-lived, it wasn't worth repeating. Because I was a pediatric patient, you and you were an adult doctor, you then sent me to my hero, the physician that would effectively treat me for the next 4 years.
I don't think you understand how much that doctor you referred me to meant to the four years of my life that would follow. Prior to him, my quality of life was poor. I couldn't play basketball, attend high school regularly, or work a job. That doctor changed my life with regular specialized infusions that you didn't have the capabilities to offer. I never would have found this doctor or this treatment without your help.
When that doctor you referred me to was forced to unexpectedly step down with no one in his place, I needed some more guidance on what to do next. Because I was no longer a pediatric patient, you could see me again. You couldn't help treat my CRPS, but you referred me to another excellent doctor out of state that could. In addition, you agreed to manage some of my smaller pain issues closer to home.
You don't see this, but every time you inject medication into my muscles to help them relax or inject steroids into my SI joint, you are increasing my quality of life by decreasing some of my more minor pains. Some days that makes all the difference between going to school and work or not.
I hope someday you can find peace in knowing that I know that you are doing everything in your power to help me. These procedures probably seem insignificant to you because you do so many, but they change my life dramatically. I can tell that your "lack of options to help" both saddens and frustrates you. You can see it in your eyes. I want you to know that l know that you are doing everything you can.
Your Youngest CRPS Patient
A couple of weeks ago, I was teaching a taekwondo class when my instructor initiated what we call a "life skill talk". That month, the life skill was self-control. He introduced the question by asking the kids what his favorite animal was and after a few guesses, he said that it was a duck. Above the water, ducks look perfectly relaxed and content, but in the water, their feet are treading water furiously to keep them afloat. In this particular situation, my instructor was trying to demonstrate to the kids that you have various thoughts and emotions, but they don't have to show. For example, the kid might be hyperactive inside, but they don't have to act the way they are feeling.
I think the same idea is applicable to people with invisible conditions. On the outside, we do our best to appear normal. Makeup may be applied, hair may be nearly groomed, and clothes may be freshly ironed. On the outside, like the part of the duck about water, it looks like absolutely nothing is wrong. A pleasant smile, a firm handshake, and some good conversation are all outsiders can see. There may be scars, braces, and/or mobility aids, but the person still appears mostly "normal" on the outside.
On the inside, there's a constant battle going on. The body is fighting constantly and the mind may be fighting as well, because of the body's fight. Patients may be worrying about an upcoming scan, waiting for test results, dealing with incompetent doctors, fighting the insurance company for a much-needed treatment, trying to get on disability after several denials, or stressing about an upcoming surgery or procedure. Then there's the financial pressures that often come with long term illnesses, helping family and friends to understand needs and limitations, and of course, dealing with all the people that say "It can't be that bad" or "You are lucky it's not worse. You should be very thankful." And who could forget the glares we get in the parking lot for parking in a handicap spot, because we "look perfectly healthy" or in the case of younger people, we are "too young to need that spot". "Stop stealing grandma's placard!" All of this is on top of typical life stressors and duties. Sounds overwhelming, right? It is!
Unfortunately, these stressors must be dealt with everyday, because chronic conditions do not take the day off. Therefore, people with invisible conditions are constantly stuck in a life similar to a duck. Everyone is like a duck in some ways, because we all have to exercise self-control while dealing with inner turmoil throughout our lives. People with invisible conditions have a bit extra to deal with constantly.
When I was first introduced to the song "Hills and Valleys" by Tauren Wells, I broke down sobbing. Music rarely makes me cry, but five years of life with Stiff Person Syndrome (SPS), Complex Regional Pain Syndrome (CRPS), and many, many other conditions, I was at a point in my life where I was so frustrated. The treatment for my SPS had stalled, wasn't helping, and my doctor didn't seem like he was really trying to help me. The infusions I needed for my CRPS were no longer covered under insurance and out of pocket expenses would be $25000 a round with 3-4 rounds a year. Add the stress of other conditions, college academics, and other life responsibilities and I was overwhelmed.
When we walk in the darkness, we are constantly searching for light. Someone to help us, someone to listen, and someone to simply say they care. Everyone has "hills" and "valleys". Our "hills" are our better times and our bigger accomplishments and our "valleys" are the times that life tries to break us. But if we wait out the valleys and climb to the hills, life didn't succeed at breaking us. After all, if you're reading this, your success rate of getting through the most excruciatingly painful, emotionally miserable, depressing and tragic times is 100%. All the times that life got tough, you were tougher than whatever struggle you faced.
Yes, this is a Christian based song, but even for those that aren't religious, there is something to be gained from listening to this song, even once. Now, I listen to this song every morning. It reminds me that no matter where my day takes me, school, work, to the hospital unexpectedly, or a relatively easier day, it's not as bad as the deep valleys in which I've found myself.
When you change your perspective and see life as a series of hills and valleys, you learn to value the time you have on earth.
All of our lives, my brother and I have fought. We love each other, but we bicker. At the end of the day, we know we have each other's backs. In the days before he left for college, I noticed that my brother was wearing a Ferocious Fighters CRPS awareness band. He never said anything about it to me and honestly, I'm not even sure where he got it. However, I was so touched that he wears it and it think it makes us feel closer together. 💗
I often get asked what it's like being in and coming out of a coma. Well, sorry to disappoint you, the time I was in a coma, was a giant black hole of "nothingness". No sights, no sounds, no hallucinations, visits from dead people. Nothing. Just a giant gap in time that I wasn't aware I was missing. It was kind of like being under anesthesia for a surgery or something only for 10 days.
When I woke up, I couldn't really move my legs or my right arm. I had minimal function in my left arm. I was confused and couldn't speak. I couldn't swallow, just they had to suction me. I had horrible double vision because my right eye was crooked. I had no balance. I was in huge rage for days because of medication side effects. My fine motor and gross motor skills were shot. So much so that I was put in four point restraints for days. I had cognitive impairments that were extremely discouraging for a straight A student. After I came out of my coma, I had hallucinations that I was in this cabin at a camp in the middle of the woods and I just wanted to go home. The "Camp nurse" (the actual nurse) told me I couldn't leave and it upset me. Everything upset me for a few days following awaking up. I was a pretty hot mess to say the least. This is just a fraction of the things I experienced post-coma. It would be over 6 months before I returned to my baseline.
For people with rare and chronic illnesses, finding a physician knowledgeable about their condition can be extremely challenging. Some people are lucky enough to score one of those doctors that are perfect in every way. Not only are they knowledgeable about the condition, they have a great bedside manner, listen to you, care about your quality of life, have a variety of options available to them and are able to think outside the box when necessary.
I was lucky enough to have a doctor like that just 45 minutes from my home for four years. He was absolutely amazing and treated by Complex Regional Pain Syndrome and comorbid conditions aggressively. He also had the capability to do very important treatments called ketamine infusions to help reduce my excruciating pain. I would go from a 10+ to a 3-4 on the pain scale in a matter of days. It was amazing and because it was in-network and in-state, my insurance covered it without issues. However, when the pain management clinic was closed due to low funding, myself and other patients, many who are my friends, were forced to find a new doctor to do the therapy.
The problem has been that insurance won't cover it out of state and paying out of pocket to go to the next state over would be about $25000 a round and to travel halfway across the country, it would be $5000 minimum for the treatment, add the flights, hotel for two weeks plus, food, rental car for that time and more. Easily $10000-$12000 A ROUND completely out of pocket and 3-4 rounds would be required each year.
Only adding to this problem is the fact that I can count one hand the number of doctors that do the infusions in my home state of Pennsylvania, and the waiting list to see these doctors for the treatment is 2 to 3 years. That is a long time when you are in excruciating pain 24/7. Not only does insurance not want to cover the treatment, the ketamine infusions are not easily accessible without a bit of traveling for many people.
This situation is not unique to me or just patients with CRPS. This happens across the board all over the world with many, many rare and chronic illnesses. Unfortunately, a treatment like this is something the insurance company won't budge on. It's my last option for treatment. It's the last option for many of the friends I've met through this journey, and somewhere around the world, there is someone who is on their last hope of getting treatment, insurance is denying it, and paying out of pocket too expensive.
We shouldn't have to fight hard to find a doctor willing to take on our complex cases. We shouldn't have to fight tooth and nail for a diagnosis over a period of years. When we find that doctor and get that diagnosis, it should not have to be a fight with the insurance company to get what we need. And yet, we do. Some of it is the inherent lack of knowledge of uncommon conditions, which is understandable because no one knows everything, but the part that can more easily be controlled is insurance.
So why then, does my quality of life and survival and that of other patients depend on whether insurance approves or denies? I don't need to be "normal". Heck, what is "normal" these days other than a setting on the dryer? Myself and many other people simply want to be functional and productive members of society. Every day, we try our best to function as much as possible, but our bodies are working against us every step of the way. After five years of being a “spoonie”, I’ve realized that for the majority of my conditions, a cure is realistically a fair ways off. This means we just need to do the best with that we have, take it minute by minute, hour by hour, day by day, and do what we can in terms of treatments. It would be exceedingly helpful for insurance companies to understand what our specialists see and rather than fighting with each other, working together for the benefit of the patient.
I've had a variety of different seizures: epileptic, non-epileptic, and grand mal. Epileptic seizures are the result of electrical misfiring in the brain, Non-epileptic seizures are generally of an unknown origin.
Before the seizure, I tend to feel a little off and maybe a little bit lethargic. I always dismissed it as me being plain tired. When you wake up, you usually have paramedics around you checking your vitals and everyone insists on crowding around asking you questions non-stop. It wouldn't be an issue if I wasn't so disoriented for one to two hours afterwards. This period of confusion is called the postictal phase. It usually subsides after a few hours. When you come to, you are usually very sore from the involuntary tensing of your muscles during the seizure, head pain if you hit the floor during the seizure, and often a sore and bloody tongue. When the body seizes it tends to clamp down on the tongue and it injures it of course. It is a very surreal experience, especially when you are lying in a puddle of your urine and stool because you lost control of your bladder and bowels. During my seizures, I am completely unresponsive. I can't hear anything, see anything, or feel anything. The seizure itself is a giant black hole for me, but the after seizure phase is one that makes me very spacey.
seizures are very scary for everyone involved or
witnessimg one. Remember to ensure the safety of the person seizing by clearing away hazards. Remove any tight fitting clothing. Don't try to hold them down. Do try to protect their head from hitting the ground by supporting it, putting a pillow underneath, or using a clothes garment like a jacket. If the person starts to vomit, turn them on their side to prevent the secretions from being aspirated into the lungs. Lastly, never put an object in a seizing person's mouth. They will not swallow their tongue.
September is U.S. Pain Awareness Month! Chronic pain is a major and quite debilitating problem in our society today. Chronic pain, in general, is defined as pain lasting longer than 3 months. While both pharmacological and non-pharmacological approaches can be taken to treat pain, there is still a huge stigma attached to it. That is what needs to change. No what's to be in nor do they want to endure the miserable treatments aimed at easing pain. More often than not, painkillers don't do anything for chronic pain or at best, merely mask the true issue. It's a big problem, but no one ever thinks about it until it happens to them. No one is safe from it. It affects all ages and all walks of life. The numbers are growing by the day, so more awareness is needed!
I deal with pain from Complex Regional Pain Syndrome, hypermobility syndromes, Stiff Person Syndrome, Dystonia, Dysautonomia, Migraines, Tension Headaches, fibromyalgia, chronic underdiagnosed GI pain, SI joint dysfunction, peripheral neuropathy, and myofascial pain syndrome every single day. I haven't been pain-free since November 2011 when I injured my knee and it never got better, before I developed all my conditions on August 24th, 2012.
Dealing with that many different conditions at once when they all cause pain every minute of everyday is exhausting.
I was to briefly mention two kind of pain that are not as well know and I'm struggling with both of them at the moment. One is called allodynia and it is a hypersensitivity to light touch. My bed sheets, clothes, the wind, water, my sweat, everything that touches me causes me pain.
The other part, hyperalgesia, is a hypersensitivity to normally painful stimuli. The other day, I accidentally pricked my fingertip with a safety pin. Not only did it hurt way more than it should have, it still hurts four days later. Honestly I barely even jabbed myself, but that would be hyperalgesia for you.
A cure for all of these conditions that cause chronic pain would be nice, but I'd be just has happy with an effective treatment! #PAM2017
That neurology appointment couldn't have gone any better! We all agreed that IVIG has been kicking my butt so hard each time I get it, that we don't want my side effects to escalate anymore to the point of danger.
So... Plan B. I am being sent back to the nephrologist (kidney doctor for the non-medical people) I saw earlier this year to go forward with plasmapheresis. This is going to involve another surgery (well, technically three) slammed into one. I'll need my existing port removed and two new Vortex (high pressure) ports placed, one on each side of my chest.
Hopefully, we can avoid the dangerous post-op crisis I experienced in April with proper post-op management (namely post-op medications and muscle relaxers). I will be requesting an appointment with the anesthesiologist to make sure that this stuff doesn't happen again. That was awful. Completely awful.
At least with the plasmapheresis, the surgery stinks, but it's a one time deal and you get it over with, unlike the IVIG, where I'm having crises every infusion.
I'm waiting for an appointment with the nephrologist, then I'll need a surgery date, then I'll need a meeting with the anesthesiologist. All of this will take some time, so more likely than not this will not all go down until the end of October-early November after I come back from Orlando.
All of the prayers definitely helped! I got lab results early this morning showing that my autoimmunity has indeed gotten worse instead of better on the IVIG, but that made my decision easier. I think we may have some other answers coming soon, but I need to talk to my doc again and do some more research. That's kind of big news for another time! 😊
Today I had a long phone conversation with the nephrologist (kidney doctor) in charge of my plasmapheresis, which means I don't have to see him before the surgery (yay for not having to go to an appointment!), because he saw me in March and my neurologist told him nothing has changed (which is true).
We are back on the pheresis route and he put the orders in for a port removal and bilateral Vortex port placement. My current port has a kink in the tubing meaning things can go in to my body, but blood doesn't come out. Additionally, it's not strong enough to handle the pressure of the pheresis machine. These Vortex ports are hardcore!
So I'll have the 3 in 1 surgery, probably in early November. The reason for the delay is primarily academic (I can't just drop everything in the middle of the semester and have surgery!), but I have a few athletic endeavors coming up that I have been training so hard for and I am not giving that up! There's no major rush either, as long as it's done soon.
But... That means I have to do one more booster of IVIG. For those of you following the saga, you know how I feel about it (or the side effects rather), but something has to bridge the 2.5 month gap between my last infusion 8/30 and the surgery plus two week waiting period that the ports "can't" be used. I guess that's what I'll have to do, but only one more! 🎉
(For those wondering, we are not going the tunneled catheter route first, it is because of my lifestyle, infection risk, and the duration of expected treatment. One, my active lifestyle with taekwondo and going to the gym would likely dislodge a Hickman line in a day. I could do that so easily. Two, infection risk on my ports vs. the Hickman line. I am extremely strict with the people that access my port. You violate sterile protocol, you start over. There are some nurses that hate me for that, but oh well. As long as I'm not getting an infection. With the Hickman you can do everything right and you're still more likely to get an infection with it than the ports. Oh yeah, and every time I sweat, I would have to change the dressing. Anyone who really knows me knows that just that is a giant problem. Three, some people experience almost immediate relief (2-3 days), but in my case, we are trying to reverse a year of contractures in my lower leg. Naturally, it's more likely to take longer, hence the ports.)
Hopefully, this is will all do the trick and get rid of Otto!
Recent blood work has shown that I am positive for 18 different infections (none of which are contagious) and about 6 more different antibodies in high levels. A very extensive Lyme disease panel was run and that all came back negative, as I fully expected it to. While I would rather not have to deal with any of this, it's good that the test results explain what I've been dealing with for years.
Some can be corrected with aggressive immunotherapy (IVIG, which clearly hasn't worked in this case. Plasmapheresis, and other oral and IV immunosuppressants), which should dramatically reduce certain symptoms. Also, some can be corrected by taking supplements. Hopefully between the supplements and the plasmapheresis, my body can start to try and heal itself.
I'm eager to see what my doctor will say about the results as a whole, but I do know that a lot of these results can clearly explain several symptoms. That's the latest from the medical front.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!