Someone asked me today why I haven't signed up for the vaccine injury compensation program. This is a program in the United States started to compensate the victims of vaccine injury, because the United States is the only country in the world in which you cannot sue the vaccine maker.
This was my response: "Money can't give me back my teenage years, allow me to attend school regularly my junior and senior years, allow me to go to my proms, give me the chance to have kids when I'm older without the increased threat of passing one of my conditions on, or take away all the near death experiences and trauma with that. Money can't fix the friendships I've lost because of my illness or all the uncaring, negligent medical professionals I've encounter. It can't fix all the tests I've failed due to illness, brain fog, or hospitalization and it can't fix all the times I've been told I was faking it or that it was all in my head. Everything that has been taken away or has happened, all the money in the world just simply can't fix, buy, or replace."
I'm lucky that I have good insurance from my dad's employer and good Medicaid that covers what the primary insurance doesn't. Right now, I don't have any outstanding medical expenses. My education is being paid for and my family and I live comfortably. There are some smaller things that would make my life easier, but money will never cover, fix, or restore the big, indelible things; the things that matter the most. In some situations, all the money in the world doesn't help and this is one of those situations.
I wanted to make a quick post before I head to bed. In the midst of all the craziness today, I never had a moment to acknowledge that today, March 15, 2017, is Stiff Person Syndrome Awareness Day. While this was my working diagnosis at one point, I wanted to write this and share a little bit of information, as I have quite a few friends that have this extremely painful and debilitating one-in-a-million condition.
Stiff Person Syndrome (SPS) is a neurological disorder with characteristics of an autoimmune disorder. The biggest symptom is stiffness/rigidity/spasticity/spasm of muscles, which is painful and potentially hard to treat and in 60% of patients, the antibody GAD65 in the blood. Some may also have GAD65 and other antibodies in their CSF (that's spinal fluid for all the non-medical people) as well. Getting a diagnosis takes an average of 7 years, misdiagnoses, and countless doctors, which as you might imagine, is incredibly frustrating. Even then, treatment is far from easy. Many people respond to high doses of diazepam (Valium), but other common treatments include: IVIG, plasmapheresis, intrathecal Baclofen therapy, immunosuppressants like rituximab, and chemotherapy agents like cytoxan. Stem cell transplants are still in trial phases in hopes of treating and maybe even one day, curing this condition.
Join me in supporting these warrior "zebras" on the 3rd Annual Stiff Person Syndrome Awareness Day!
We've all heard it, "Don't worry about it", "You're just stressed out", and "Reduce your stress", as if it will fix all our problems. While stress increases symptoms of chronic illness (even illness in general) for anyone, it is not the cure for everything. In fact, telling someone not to stress increases stress. It is actually like psychological phenomenon, called the Ironic Process Theory, which says that by trying not to think about something you only think about it more. So by forcing yourself to think positive thoughts, for instance, the bad stuff you are suppressing only comes back into mind more intensely.
During a consultation with a new doctor, we discussed my medical history, treatments, and some other things about me. I'm a college student on the pre-medicine track, and to say that academics are stressful is an understatement. Like many people with chronic illnesses, I've heard the conversation about reducing stress countless times. It's kind of like listening to a broken record at this point, which is why this doctor cause me so off guard. He said, "I'd tell you to not stress out, but I know that is just about impossible while studying medicine." My jaw just about dropped. "Therefore, focus on the things you love to more effectively manage that stress," he continued. For me, stress management includes daily exercise, listening to music, adult coloring books, and watching movies. Of course, this strategy is different for everyone.
That is the first time that I've ever had a doctor knowledge that stress is a normal part of human life and that it is about how effectively we manage it rather than trying to eradicate it all together. While there may be some parts of life we can reduce stress in, that shouldn't be the big goal. Developing coping mechanisms and strategies should be key. These mechanisms won't be the same for everyone, so each person has to take the time to decide what works for them.
The stress of life and living with chronic illness isn't going anywhere, but we can be better prepared to deal with those stressors!
***This is a piece I wrote about a month and a half ago before I found the doctor that could help. I wasn't going to publish it as some sections aren't pertinent anymore, but I decided that there are other people dealing with this and to publish it anyway.***
I am about to run out of my medication, here is why that is a huge problem.
In an effort to cut down on the opioid overdoses and abuse, the FDA has imposed stricter prescribing guidelines on medical providers. For me personally, opioids aren't effective and I'm not interested in going through life so drugged up that I hardly recognize the pain. Unfortunately for many, that's all opioids do is make the person less aware of the pain because they are in an altered mental state. Not everyone, but many.
So I've never taken opioids for more than 2-3 days after a major surgery. Even then, I rarely even get the prescription filled. However, for the last 4 years, I've been on a specially compounded medication called ketamine. It's a small lozenge I place under my tongue and allow to dissolve. I usually only take it at night, as that is normally the most painful time of day for me. It's been highly effective for me and unlike many other medications, I don't have to take it if I don't need it. Some days I may only need 1 dose, the next day I may need 3 doses, and the next I may not need it at all. I can take it up to 4 times a day and I have a lot of flexibility in terms of taking it. I don't experience any side effects and there's no withdrawal if I don't take it everyday.
The doctor that started me on the medication kept me on it for 4 years because it was so effective and allowed me to be active. When he was forced to step down from his position, I was left to scramble to find someone who would be willing to manage that medication. It is incredibly challenging to find someone to write for the medicine, as most doctors are unaware it is even a treatment. I saw doctor after doctor, and no one had ever prescribed it. I am a week from running out of the medication that allows me to go to school, participate in sports, volunteer, have a social life, work, and so much more. Without it, daily life is filled with unbearable and debilitating pain. All of this will come to a screeching halt without the medication.
Fortunately, 5 days before I ran out of the medication, I saw a doctor who was willing to write for it. He hadn't written a script for it in over 15 years, but he wasn't about to let my life come to an abrupt halt because I didn't have the medication I needed. I drove two hours away, out of state to see this doctor, because no one near me could help. That is not ok. It should not have taken months to find someone that could help me. However, it is the unfortunate reality of so many people around the country.
In 2013, I was just wrapping up an eleven day stay in the pediatric intensive care unit after a procedure went seriously awry. I had been on the waiting list to attend a program at a pediatric rehabilitation facility near my home for several months. I'd been battling Complex Regional Pain Syndrome for 8 months at that point and non-invasive therapies had failed. I could do inpatient intravenous treatments with two epidurals, but that was really hard on my body.
One of the intensivists in the ICU had heard about all the problems getting me into the rehab program, but one of his "buddies" was an attending at that hospital. He called him up and within hours, they had a bed for me.
I was transferred from one hospital to the other to start an aggressive inpatient regimen of physical therapy, occupational therapy, aqua therapy, psychology, and group therapy 8-9 hours a day. In the evenings, we had a home exercise program to do for an hour each night. It was a grueling program, physically, mentally, and emotionally. The mindset behind this program was to reduce the pain and improve my function by forcing me to exercise through the pain.
Now, this pain isn't just a small ache. This was a full body cold burning sensation with just about every other pain sensation possible on top of that. Unlike some, I was able to walk and do most activities of daily living independently. I was also really physically fit from doing 2 hours of outpatient physical therapy every other day and 1 hour of home exercise on the off days. Should have made the program easier, right? Wrong!
I was poorly cared for while in the program and it took its toll on me. I never had any problems with the psychologist and the occupational therapist, but my physical therapist was brutal toward me. Due to a complication, my foot and ankle would go into a spasm and lock turned in. The PT would turn the electrical stimulation on at its maximum strength for 45 minutes while she tried to forced my foot flat. The intensity of the stimulation was so high that there would be burns where the pads were placed. Eventually she would just give up and make me run, jump, lunge, etc on the side of my foot/ankle. I ended up just falling to the floor over and over again frequently hitting my head, straining my neck, and getting several cuts, scrapes, and bruises while she stared at me from across the room with a disapproving look, making no attempt to prevent me from being hurt. I didn't take an pain medication, but some of the muscle relaxers I was on to stop the spasms from happening were abruptly discontinued and I had to withdraw from the medications, some of which were notoriously dangerous if you stopped then cold turkey. It was a bad experience overall.
One day, I was sitting in my room watching TV eating lunch before my afternoon sessions. I heard a small knock at the door. When I turned my head, I saw a small man with a cleaning trolley. "Can I come in and clean?", the custodian asked. "Come in", I gestured. He made his way across my room slowly, the cleaning cart in tow. For a few minutes, he worked silently as I ate. After a while, he broke the silence. I don't remember what we talked about initially, but I'll never forget the second part of the conversation. "So why are you here?", he asked. "I'm doing the pain rehabilitation program. I have CRPS.", I replied. After explaining CRPS briefly, he remarked how challenging it must be. I shrugged and stared at the floor. "I'm kind of getting used to it. I've never really questioned why I got this or why me." I will never forget his response. He said, "Well young lady, you are absolutely right. The question is not why you, it's why not you?". I looked at him kind of confused. "You seem so intelligent, well spoken, and beautiful. If someone has to have this, if someone has to suffer through this, it's going to be the strongest people. The average people would collapse under the weight of the condition and all that it entails.", he continued. By that time, I started to see his point. I continued pondering this idea all the way down to my physical therapy appointments, while swimming laps during aqua therapy, and while lying in bed that night. Although the meaning of that conversation has changed a little bit over the years, the overall message is still the same.
Someone has to have the condition, so why not me?
I am a complicated patient and I know it. I have so many diagnoses and symptoms I couldn't name them of the top of my head even if I had all day. That being said, asking a doctor is wrap their head around everything I go through is a challenging feat.
You see, when the average person gets sick, they go to the doctor wondering what is wrong. They expect that the doctor will have an clear answer and a treatment that will make them feel better. When you are "normal people sick", with something like strep throat, bronchitis, or a nasty cold, a doctor can easily make the diagnosis. However, not all illnesses are common or present themselves in the manner described in medical school textbooks. This makes getting an answer even more difficult. However, the expectation is that doctors know everything, but they are in fact human and no human knows everything.
There is a tremendous amount of pressure on healthcare providers to have an answer, to have a treatment, and to have a cure. But what if they don't? As I've gone through my journey as an undiagnosed patient, I've come to recognize a few different kinds medical providers. There's the kind that actually know what your illness is and how to treat it, if such treatment is available, the providers that don't know what is wrong but insist that it is "all in your head", despite quantitative tests coming back abnormal, the providers that don't know and aren't willing to investigate further, and the providers that don't know, but want to find out.
Of course we all want answers and accurate answers at that. It is easy to say you know something, but it is not as easy to admit "I don't know, but I'm going to do everything I can to find out".
That being said, I have an enormous amount of respect for the doctor that can look their patient in the eye and say "I don't know what it is going on and I'm not going to claim to know, but I'm willing to try and find some answers".
That may rock some individuals' confidence in the physician. Doctors know everything, right? If they don't they are poor doctors. Not necessarily. Just because a doctor doesn't know what is wrong doesn't mean they are less intelligent, less skilled, etc. than another doctor who may claim that they know what's ailing you.
As Cicero once said, "Any man is liable to make mistakes, but only the fools persists in error". I think the same can be said for the doctors involved in the diagnostic process. Doctors are humans and humans make mistakes, but to claim that you know something when you don't is foolish and can be harmful to the patient. As an undiagnosed patient, if I can't have the doctor that knows exactly what is going on, I want that doctor that is confident and to do everything they can to help me.
February 28, 2017, is the 10th Annual World Rare Disease Day! A rare or orphan disease is a disease affecting less than 200,000 people, according to the National Organization for Rare Diseases (NORD). There are 7000 known rare diseases and 95% of them have no FDA approved treatment. Obtaining a diagnosis may take months, years, even decades, for some, and a diagnosis does not guarantee treatment or a cure.
I have 3 diseases that are officially designated as rare diseases by NORD (CRPS, EDS, and acquired torsion/generalized dystonia) with another couple "mystery" diagnoses that I hope to have a name for soon. My luck, they will be rare diseases as well, but we've ruled out the "horses".
Today the rare disease community and advocates want to make the world aware of these "zebras". While doctors are trained to think horses when they hear hoofbeats, there are still 30 million zebras in the U.S. alone! That's about 1 in 10 people, or 10% of the population. Fighting a rare disease (or any disease for that matter), demands incredible strength, perseverance, and determination to continue living the best possible life and achieving your goals. It's not easy, but with the help of supportive family, friends, and medical providers, it can be done! Whether you know it or not, there is probably someone around you everyday fighting a battle similar to the one I am describing.
#wwrd17 #NORD #rarediseaseday #globalgenes #icareaboutrare #CRPS #EDS #dystonia #undiagnosed #mysterydiagnosis
I know I'm like 10 days late in posting this but better late than never, right?