What I really want for Christmas is for good health and a happy family. I was spending so much time trying to think of some of the necessities that I might need and could maybe ask for for Christmas. I realized everything I need and could ever want are things that money can’t buy. I am thankful that I get to spend Christmas at home after spending this past Thanksgiving in the ICU. I hope that in 2018 I will get to walk with flat feet and minimal spasms. My Christmas Miracle will come. Maybe not under the tree, but in God’s perfect timing, I know it will.
A couple of people have been asking about the plasmapheresis and life lately, so I thought I’d do a big update.
Plasmapheresis first. Today I had what I believe is Round 6 of PLEX and their were no complications besides some minor allergic reactions. I’m now on a once a week regimen down from twice a week, and since making the change, I was making small improvements with my toes and arms. The day after I would have gotten my next plasmapheresis (Last Friday), I completely regressed back to the spasms that were so severe they had me in the ICU over Thanksgiving. My doctor doesn’t believe that there is enough information to say that the flare and the reduction in PLEX are correlated. Heck of a coincidence then! 😑
This doc is so nice and actually listens really well usually, so I know he’s not trying to be a pain, but it puts me in a bind. Especially because he won’t be at my next treatment next week because he’s out of town. I’ll be calling my neurologist for insight and my local pain management doctor to schedule injections in my back muscles. We’ll continue to treat the anemia secondary to the treatment as well.
The 31 day cardiac event monitor is still going and going well. Thankfully, I was able to get a new charger overnighted to me as well as hypoallergenic electrodes. I’m hoping they work better for my allergic and sensitive skin. As an aside, the cardiac monitor makes a very effective projectile when I’m really into a taekwondo workout and it flies out of my dobok. 😂
My Dysautonomia/Orthostatic Hypotension continues to be uncontrolled and some of my odd CRPS symptoms I get from time to time have continued.
Super glad to be done with my semester. I’m officially a senior (finally!), a milestone I wasn’t sure I would pull off medically my freshman year. I’ll be moving back to good ol’ Ruskin Hall in January, which I’m extremely excited about.
I absolutely love my spring internship that I started earlier! It’s so closely aligned with my passions, it doesn’t even feel like work most of the day! One more internship day this year, two more days of work, then I get a complete break until 2018. Sleep here I come!
Like many patients with chronic and rare diseases, I am forced to do thorough research to find specialists capable of handling my complex medical case. I research, make some phone calls, research some more, and depending on how the search goes, I eventually make an appointment with the specialist. I’m often told “Oh yes, Dr. Smith knows about stiff person syndrome” (or any of my other conditions). That’s fantastic Dr. Smith is aware of the condition. It’s a huge actually, but has Dr. Smith ever treated a patient with that condition? If so, approximately how many? How successfully? In this scenario, Dr. Smith may have only seen or heard of one case, perhaps when they were in medical school years ago.
This a critical difference between a doctor being generally aware of a rare condition, but having a doctor that truly knows and understands what they are doing to able to treat the condition can make all the difference. They are dramatically different. For instance, a doctor might have heard of stiff person syndrome and know that it causes muscle spasms, but they may not know that such spasms can compromise my throat, vocal cords, and diaphragm. Muscles that are essential for sustain life and respiratory stability. As a result, they aren’t sure about how to treat it.
In the spoonie community, I’ve noticed that many patients get an appointment with a “specialist”. They have been searching desperately for answers and doctors that can help them; many after years of suffering. So they get their hopes up, only to have their time and money wasted. Because a doctor may not have extensive knowledge on the condition or the treatment options, it is important to distinguish between doctors that are aware of the condition and doctors that are not only aware and understanding, but have successfully treated people in the past.
It’s taken me a while, but I’m realizing that detailed inquiries about the sub-specialties of the doctors while making an appointment can save valuable time and money. So just remember, doctors seeing or hearing about isolated cases of rare diseases is different than a doctor who has treated several patients with the rare condition. Hopefully, this helps to explain doctors and how small questions or information can make or break the experience. Remember, there’s a difference between a doctor that is just aware and a doctor that has seen and treated several people with the rare condition. With that in mind, hopefully we can reduce the number of disappointing appointments and reduce the waste of time, financial, physical, and emotional resources.
I’ve had this article saved for a while. In my own life, sports have had a profound impact on the person I am today. I’ve played a lot of sports throughout my life (dance, gymnastics, ice skating, soccer, basketball, cross country, skiing (including racing), taekwondo, swim team, tang soo do, volleyball, bowling) There’s more I know I’m forgetting, but those are the bigger ones worth mentioning. Every single one of those sports taught me the importance of being a good team player and good sportsmanship.
Was/am I the best at any of those sports? Heck no, but the one thing I can control is my attitude. I have my moments (usually in private), but for the most part I wouldn’t dream of doing some the stuff I’ve seen some other players/coaches do (throwing a chair at a basketball game, snapping a clipboard out of anger, intentionally biting another player (Yeah, someone actually bit my hand hard enough to cause bleeding during a basketball game in high school. Not sure what I did to deserve that one.), taunting someone because they had cochlear implants, etc. (I had the whole home section while we were at an away game taunting me while I was playing basketball because of my implants. It didn’t bother me, but my teammates didn’t like it.), and much more.
Sports have been a part of my life since I was four years old and they’ve taught me the value of hard work, getting back up when you get shoved to the ground (both on the field, court, etc. and in life), time management to balance school, sports, and other responsibilities, dedication, perseverance, and courage. So much that I’ve learned about people both good and bad, self-awareness, and how to respond to adversity can at least be partially attributed to sports. My inability to take no for and answer when it pertains to something I’m passionate about/believe in comes from sports too. It’s a large part of why I continue some of these sports into adulthood; I’m always learning something from them.
Oh, and my ability to do what seems like everything on earth in a short period of time to everyone else? Basketball, taekwondo, and skiing. Especially in high school. I’ve learned to prioritize and adjust as necessary as circumstances change. It all started with the sports.
Link to original article: http://www.refinery29.com/girls-quitting-sports-reasons
Great appointment today with the new physical medicine and rehabilitation doctor. He was kind, compassionate, knowledgeable on the majority of my conditions, and genuinely wants to help. As far as treatment for my CRPS goes, he said that if the ketamine infusions work, I should do them. I can get them done in Pittsburgh in a UPMC facility, but I would need to do it in the ICU. I can live with that. All about the compromising. Eventually, they will be offering outpatient infusions, which is exciting.
He officially changed my diagnosis from benign joint hypermobility syndrome to Ehlers-Danlos Syndrome-Hypermobility Type (EDS-HT), which means I can get the splints I need covered by insurance. Since I’ve already done tons of PT and know the appropriate exercises to treat my joint issues, he suggested controlling the pain using a specially compounded cream different from the ones I have been using or have used in the past. There’s a possibility we could try prolotherapy in the future, but it’s absurdly expensive and not covered by insurance due to its “experimental” status. He also wants a special set of X-rays on my neck to evaluate the instability as dislocations of the cervical spine can be very dangerous.
In regards to my feet/ankles, he was trying to move my feet and he said, “Oh my gosh, this is tight! Incredibly impressive…” I was like 🤦🏼♀️. As my neurologist always says, you don’t want to be the interesting case. All he could recommend was Botox (which I’ve tried and failed four rounds of) and tendon release surgery if all else fails. Come on plasmapheresis, do your thing!
We have a good plan in place right now and I’ll need back in a month to go over results. Hopefully by then there is some response to the plasmapheresis.
I had plasmapheresis round 5 today and it took extra long because my blood pressure was quite low, so I needed a liter of saline to get me out of the danger zone. My labs from last week showed significant anemia just 3 treatments in and according to the doctor, most of his patients don’t get anemic until 12-13 rounds into treatment. Overachieving much? Iron tablet a few days a week should address the issue.
Unfortunately, the appointment this morning triggered a horrible spasm episode that have been going on for about 5 hours now, when the resident tried to force my feet flat and was very aggressive in moving my spasmed muscles, relaxing and heat pads it is until I can finish the research paper.
I’m so sorry that you’ve gone what you went through buddy. I’m sorry that those guards were abusive to you. I’m sure there was more abuse I didn’t about. No dog should be locked up in a crate 23 out of 24 hours of the day. You didn’t deserve it and no dog does. There was no kiss I could give it to make it better. I’m sorry there weren’t enough cuddles, games of tug, fetch, treats, and mooching for food off my plate to fix all the abuses of your puphood and I’m sure many more things I didn’t know. I’m sorry I couldn’t say goodbye because I was in the ICU.
I got to teach you so many new skills in our time together. You are a brilliant dog. Even on your distant days, you were right by my side, alerting me to incoming danger. Your Momma and your Grandmama will miss you sweet boy. I know that Dave misses you everyday terribly too.
I don’t know where you are headed to next on this journey of life, but remember this, “I love you forever. ’ll like you for always, as long I’m living my Finns you’ll be. They tell me I’m a million in million person, but a one in a million person needs a one in a million sidekick. You’re my sidekick.
Until we meet again my friend,
Your Loving Handler, Meg
So yesterday I was having a really bad spasm attack and I just got back from the bathroom and my ankle was just dislocated my on trying to transfer onto the toilet. Thank God I was holding onto the side. rail for dear life.
I injured myself again on the second transfer back to my chair then by the time I managed to get my chair me in the pump out the door and into my room I still had to plug the pump into the wall
I just sat in my wheelchair for like 30 to 35 minutes and just cried. Why did I have to get sick? Why did I have to get all the conditions I did? Why did they all have to be so hard to treat? Why did they all have to be so lhard to treat? Why don’t doctors always want to help those with rare diseases? Why is all the money being sent to cancer research when there’s just as many other people with rare diseases has cancer patients? Why couldn’t I get a condition that every doctor believes in? Why couldn’t I get a condition where there was a factor treatment? Why couldn’t I get a commission that was curable?? Are just some of the thoughts running through my head and that 30 minutes.
Surgery went ok, but the recovery room antics have me completely angry. I’m admitted now and they want to throw narcotics at me to treat the pain. I’m allergic to them and they don’t work. If they’d treat the acute spasms (which are actually not to hard to treat), there wouldn’t be pain!
I got a new attending and he is following my SPS crisis protocol. We’ll start with the diazepam, zofran, sumatriptan, and ice packs (just for the incisions, as CRPS doesn’t like ice). Goal 1 is to get me to be able to eat, goal 2 is to get my spasms at a comfortable level, goal 3 is controlling incisional pain (which the ice is really helping), goal 4 is to control this migraine before it gets too out of hand, and goal 5 is that he really wants to make sure I get sleep tonight. I don’t know what he’ll use to make that happen, but he’s pretty awesome so far! Thank you God! 🙏🏼
IV Team came to access one of my ports, so I can get rid of this really, really sore peripheral IV. YAY!
They cut the single med that allows me to be able to BREATHE in half because the “dose is too high”! I’m not on any painkillers, because I don’t need them and I’m allergic to them, but is it too much to ask for my spasms to be controlled? They clearly haven’t looked up Stiff Person Syndrome! 😡 So now I’m back to square one in excruciating spasms. I can’t even sit up, roll over, breathe properly, or move my legs due to spasms. God help me. Why is everything a fight?!
Dr. came in and did a 2 minute physical exam and said “Have a nice night.” and left without answering any of my concerns. Migraine still hasn’t been treated, massive allergic reaction has not been addressed (after I requested Benadryl), and of course the spasms.
I’ll never forget November 10, 2012. It was the weekend of my high school basketball team’s annual grade school basketball tournament and everyone was running back and forth between working games, squeezing in practices, and playing our own preseason games. It was a crazy weekend for everyone involved and it was fun chaos. Although tiring, the grade school tournament was a fun event each year and I loved watching the up and coming players.
That Saturday, my team and I were playing in a preseason tournament at South Fayette High School. That morning I played several games on both the JV and Varsity teams. My coach and most of the varsity team had to head back to our school to work the games, but he asked me to stay behind and play with the JV team too. I quickly agreed because I never declined a chance to play an extra game. As I was lacing up my shoes for the game, an unusual wave of emotion came over me and it caught me off guard. Something about that moment told me that this would probably be the last high school basketball game I ever played in. Earlier in the week, I had had a quantitative sudomotor axon response test (QSART) which is a fancy name for a sweat test. When I had the test, the technician read off a list of symptoms and I was to indicate which ones I had. I.had.every.single.one. We didn’t have the results yet, but something made my mom and I both think the test would come back abnormal. We wouldn’t get the results until November 14th, but until then, I was allowed to play ball.
So back to the game, a little voice inside me whispered, “If this is going to be the last basketball game you ever play, how do you want that game to look? How would you want to play? What kind of player would you want people to remember you as?”
I took that as a sign, so during that game, I sprinted faster, jumped higher for every rebound I could get my hands on, passed the ball around to the open shooter so they could take the better shot, became a more vocal leader on the court, and I even snatched up a pair of steals. I ended the game with 9 points, a handful of rebounds, a few assists, 2 steals, and 4 fouls, which is a pretty solid game for me. I am definitely proud of my performance that game. I left it all on the court that day, not knowing if I would ever get to play basketball again.
As it turned out, the test did come back very abnormal and on November 14, 2012, my basketball career officially ended. I would fight to try and get back to the game, but I never managed to make it a reality. So now my challenge to myself and others is, if you knew that it was going to be the last time you would ever be able to do something, how would you play that game, live that day, etc.? Try your best to make everyday look like that day and the list of things to regret should be relatively short. I apply this concept to everything I do in life now, because you never know when the timer is going to run out. For so much of my basketball career, I took the game for granted. I never really had any injuries from the game despite my very physical playing style. But that day, I knew I only had one last game and I knew how I wanted to play it.
This October-November marks five years of battling the fiery, cold burn of Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS). So I feel like it’s time to write a letter to my 16-year-old newly diagnosed self… I hope that newly diagnosed patients can also learn something from this.
Dear 16-year-old Meg,
You’ve just embarked on a perilous journey that you want nothing to do with. I know you are in a level of pain most people will thankfully never experience, but I know that is very little comfort and you have no idea how you are going to make it through the next minute. I understand that you are severely sleep deprived and that making your body function at the bare minimum is a challenge. You can’t imagine how you are going to play basketball again or ski this winter, if you barely have enough energy to get through the day. You are wondering how you will ever finish your junior year. Will you ever drive? Will you ever manage to have a job? Will you manage to graduate from high school? Will you go to college? Will you graduate from college? Is the world ending?
Although you thought for sure that your world was coming to end most days, I’m here to tell you that five years later, your world hasn’t ended. You finished your junior year with your straight A’s. You learned to drive and got your license. You have had jobs. You earned your EMT certification. You graduated high school. You went on to the college of your dreams, Pitt, and even though you haven’t graduated yet, you will graduate in a year. You’ve done so many other things as well, that wouldn’t have happened if you hadn’t gotten sick. You wouldn’t have so many of your friends if you didn’t get sick. People you can’t imagine life without.
Now, at 21 years old, you know that life is so very fragile and precious. You’ve learned that life is not measured by the number of breaths you take, but by the number of moments that take your breath away. You’ve fought for your life several times. There were times you didn’t think you would win. There were times you shouldn’t have won, but by God’s will, you pulled through. Let’s just say the limits of your body have been tested.
The journey has been challenging, but it hasn’t all been bad. There has been some amazing good come out of this as well. You’d learn who really has your back; who’s really going to be there for you at 2AM texting with you during a flare, who’s going to come over and hang out with you and watch movies because you can’t move from bed, who’s going to rescue you in the middle of winter when your wheelchair gets stuck in slush in the middle of Forbes Avenue and the list goes on.
You’ve made it through five years of battling the fiery monster kid. Hopefully in the next five years they will find a cure, but if they don’t, know that you will crush the next five years too.
Keep your chin up and charge the mountain!