Early Monday morning, we lost one of the greats. I grew up in the 80’s. I spent many days after school and during my summers watching movies by Harold Ramis. I had a major crush on him and Bill Murray in Stripes. My dad once told me when he heard I was going in the Navy, he thought of me as Private Benjamin, but I thought myself more like the characters John and Russell, played by Bill Murray and Harold Ramis, respectively, in the movie Stripes.
I was not the type to wish for a manicure and lunch. Yes, I was a manicurist, but before I started beauty school at age 16, the only manicurist I pictured was the one Bugs Bunny played in that great cartoon with the orange monster. Yes, I once aspired to be a hairdresser, but that was not for me because I could not roll a perm. So, I chose to skip the hair and go straight to the nail license. But I still wanted more.
While in beauty school, I loved learning about the different combinations of chemicals and how they worked together on a molecular level, so I looked into starting my general education requirements toward some kind of science degree.
Back when I was in the 4th grade, I wanted to be a doctor, but was told I could not be, because I had no penis. It was 1981 and I was seriously misinformed, but part of a large Italian family where women were groomed to think popping out a few kids and marrying a man who will take care of you, to be a life goal. It never sat well with me. In the 7th grade, I discovered my grandmother’s typewriter. Back then, they had typing classes and a lot of my writing started out as typing drills, but even before that I wrote short stories. My favorite author at the time was Stephen King (Pre IT.) My writing was pretty dark and it got darker in my teens. I didn’t share it with any one. I was afraid of being laughed at.
I repeated the 8th grade and found I had a love for performing live theatre. I was in a play about pirates. The whole drama class wrote it. We did the script, made our own costumes and I had a pretty big part. I was kidnapped by pirates. I had a big scene where I screamed on stage and was chased by pirates through our school’s multipurpose room. It was the biggest thing I had done in my young life- not bigger than holding my younger sister and brother on their way home from the hospital. (it was the 70’s) So it was the third most important thing I had done. And my dad took pictures of everything. I was so excited that my big theatrical moment would be recorded forever on Kodak Paper. But my dad forgot to bring his camera.
|“Convicted? No, never convicted.”|
I don’t know if that was a turning point for me, but I did go back to smoking the sweet stinky weed that got me held back to repeat the 8th grade. So, I went back to smoking copious amounts of pot, but very briefly. I quit in 9th grade, after I met the most wonderful teacher I would ever meet. Sure, there
were some great teachers, but Mr. Hoctor, well, he made me want to show up to school. I would actually ditch other classes to sit in on his other classes. He’s retired now. His classes made me want to be a better me. In one class, I did a scene from Annie Hall with this really cute guy I had a secret crush on and got to kiss during rehearsal and on stage. I had to kill a spider- the size of a Buick, for his neurotic character. I had so much fun, I wanted more. Then Mr. Hoctor did a class trip to see Second City perform. Leaving the theatre, I thought, “I want to do that.”
I wanted to do what they did on stage. I had no idea how, but it’s what I wanted to do. Mr. Hoctor began teaching improvisation and a show was created. I tried out for it and got a part as one of the players. I was so excited, but then, I let my head get in the way. I eventually dropped out, claiming stage fright before opening night. I have to say not only was that a douchetastic move by me to to my fellow actors and my drama teacher, I also hurt myself the most buy not believing in myself.
So buried myself in other goals. I finished ROP classes to get my manicurist license, graduated high school one year early (or on time if you don’t count the being held back part) and tried to be a responsible adult. I realized I did not want to be a manicurist forever and looked to college. That’s why I joined the Navy. I wanted to “get out of Dodge” and earn money for college. A friend of mine recently earned his B.S. in biology and I wanted to earn my B.S. I was sure what science, I just knew that I loved science in general, but more than anything, I wanted to have the initials B.S. after my name. So, I joined the Navy.
I finished up my “hitch”, got out got diagnosed with scleroderma, then sarcoidosis. I spent my mid twenties up until now, in doctor’s offices and hospitals. Sure, I worked as much as I could, but my “career” title was really: Professional patient. Yes, I could be called professional because the Veteran’s Administration paid me a pension because I am 100% service connected. -and yes, that is a whole other post.
My point? Decades after I first saw the movies Stripes, Animal House, Caddyshack and Ghostbusters- they are still my go to movies. I spent lots of time in hospitals, on bed rest or just plain alone, in excruciating pain no doctor understood or knew how to treat for 16 years. Lines from these movies inspired me to make fun of my pain. My high school drama teacher inspired me to customize my speech therapy to songs and exercises, and be fearless about singing. I probably can’t carry a tune in a bucket, but Mr. Hoctor once told our class: Anyone can sing, you just have to commit to it. So, I sing in the shower, in my car and take amazing chances endangering anyone within earshot. Except for my son, who thinks I have a beautiful voice. And really, his ears are the ones that matter most.
Today, I read that Harold Ramis had an autoimmune disease. I never knew that. Harold Ramis will not be remembered for his illness. He will be remembered for the great joy and laughter he brought to millions. For me, it was very personal. I never met the guy, I just loved his work. It inspired my sense of humor. Today, he inspired me to be remembered not for my illness, but the joy I want to bring others with laughter. I love to write. I also love to stand in front of a group of people and see if I can make them laugh.
I want to get people to stop paying attention to the way my hands look and hear what I have to say. I want to make them laugh and forget themselves. I want to be so good at it, they forget about my hands and allow me to make them laugh. I want to be remembered the way Harold Ramis will be remembered; for the way he made people forget themselves, enjoy their day, and just laugh and be happy, if only while I had their attention.
I owe so much to Harold Ramis and my high school drama teacher, Mr. Hoctor. I couldn’t write this without mentioning my drama teacher. He planted so many seeds. Harold Ramis’ work, prepared the soil. It only took me 25 years to water the garden. I also feel very fortunate to have parents with a pretty cool video library, and friends with the same great taste in movies.
Thank you for reading. Now please, go watch a Harold Ramis Movie and have yourself a good laugh!
1995 called. They want their government shutdown back.
I wasn’t planning on staying up until midnight. I had Hulu Plus on while getting my list of bills ready to make payments. I was very excited because I have started working again. Commission is starting to trickle in, and I could see my goal of finally getting off of social security benefits. My work was beginning to show results.
Lately, I have been refraining from watching live coverage of what I perceived as another attempt by certain elected officials as something to angry up the blood of their base, and keep them happy. A so called filibuster of a law that passed three years ago seemed like a dog and pony show. Boy, was I wrong.
My organization in front of the TV took me past the midnight hour. I was excited to get my bills paid, so I logged onto my bank account to get the ball rolling. I found it at a negative balance. Then, I checked the news. I spouted obscenities on Facebook and Twitter and had a glass of wine (actually, half- but don’t tell my docs).
Luckily, my sedatives have begun to kick in and I can finally stop spouting expletives. Not because the sedatives are working, but because I am tired and I am going to see my son tomorrow. Luckily, I have a full tank of gas, food in my pantry and a roof over my head. But there are disabled veterans and senior citizens who don’t have it as good as I do.
My point is, I hear people thank me for my service frequently. Every time I do, I feel it is an empty wish. I did nothing heroic. I got two autoimmune diseases from doing body work on boats without proper safety equipment because there was not equipment small enough for me back in the day. (Everything was made for men, even in the 90’s) Luckily, the Veteran’s Administration took responsibility by providing life saving healthcare to me and my son. I was given monthly veterans financial benefits because I have two debilitating diseases. I feel so happy that I am returning to work. My Veterans benefits allow me to work at a pace that can allow few hours because my health does make it difficult, but I am getting stronger because I am allowed this grace. This grace of easing back to work and living life on my terms.
I am in a position of starting over again and damn grateful to be here. What I do wonder about is people not as lucky as I. Yes, I am living check to check, but there are many struggling to feed themselves and their own families. Today, our federal government did not pay its disabled veterans because a few people were mad about a law that passed in 2010, causing our government to shut down. This does’t effect those in government who don’t count on benefits to pay rent and buy food. No, this trickles down to the veterans they use as props. They claim they support this country’s veterans. Their actions show their words to be untrue. They claim to be Christian, yet the first group of citizens they throw under the bus are veterans, the elderly, the sick and the poor.
I’m going to sleep now. I hope when I wake up, this will have been some bad dream. But I am pretty sure that those who forced and encouraged this shutdown, are home in their beds sleeping. They sleep because they have no conscious. They will set out this morning but not to the buildings to do their job and govern. I bet the -$113.00 in my bank account, their first stop will be to the morning talk shows, to blame Obama for what they have created. And continue to “thank” our county’s veterans by continuing to hold us hostage.
Forgive me for not editing. I’m too tired. I post this urgently because I hope that someone reads it and understands we need to move forward to work together. To understand that compromise does not mean, “My way or the highway.” I hope that this post can inspire someone who can stop this madness, and work in the interest of the people they are supposed to represent. This is a message to elected officials who can stop this, from those of us who don’t have car services, assistants or lobbying firms to speak for us. Please release we the hostages, so that we may go back to being we the people.
Edited for correction October 1, 2013, 8am
This morning, I woke up and checked my bank account at 7:30. It was still in the negative. I had a glass of water, took my dog for a walk, returned and checked my bank account again. My Veteran’s benefits had been paid! I’m not sure what happened. I have been paid my veteran’s benefits by 12:01am since 1996. Not sure what the delay was. Somedays, it’s great to find out that there was a delay and not a complete non-payment. I have no idea what happened. Maybe it was a glitch in my account. Maybe they paid everyone late. My biggest hope is that somehow, this drama stops and we can get back to the business of governing.
In order for occupational therapy to be effective, the patient must be on time, and consistent with appointment attendance. I was not. A trip to my closest VA was a four-hour excursion. An hour one-way, an hour there and an hour back- with no traffic, which would almost never happen- I changed my appointments frequently when I had them with OT, so my therapist limited me to just splinting. And really, driving over two hours for each appointment. Something had to change, and for me, it was my location.
The VA does provide options to see local providers called, “Fee Basis”, but that’s a whole other post.
If You Skipped to the End
I will be posting more about my progress in occupational therapy to restore function to my hands devastated by scleroderma, called sclerodactyly. Today, I will share a milestone: I was able to wear the splint for my right hand through the night, two nights in a row. Woo whoo!
In the pictures, there is some hyperextension going on in the ring and pinky DIP’s or distal interphelangeal joints. The splint will need to be adjusted. It feels comfortable to me, but as I strengthen, that hyperextension will be counterproductive and possibly harmful in the long run. During my fitting appointment, my hands were further back and the DIPs were in line. So, my hands have opened up some and my fingertips have crept toward the end.
Are you receiving occupational therapy?
Please give me a shout if you are. I’d like to know how others are doing. Hand therapy for functionality is not just for scleroderma patients. I meet stroke patients, paralysis patients, RA patients and more. So let me know what goal you are working toward. My goal is to maintain what I have, and gain some functionality. Of course I’m shooting for the stars for being able to play some guitar again, but I will be happy with even a small gain. Post your progress in the comments. Not for me, but for other patients who might read and be encouraged, or learn from your difficulties.
You can make a difference and help fund scleroderma research:
Day 21 of Wego Health’s NHPBM Bonus Prompt: Raise Awareness
I have not been able to keep up with the 30 day 30 in 30 for Wego Health for a few reasons, but one is I recently had some dental surgery. Last monday, I underwent a Connective Tissue/Gum Graft. This is my third. Yes, you read that correctly. So for those of you doing dental searches on dental issues with scleroderma, those graphic pictures are more likely not to be your fate.
But before we get to prevention, lets talk about how I got to the point where I needed to have my gum tissue replaced. (It’s my blog and everything revolves around me, remember? Or so I would like to believe. Shh-This is my ego trip, so strap yourself in and just enjoy the ride while I make my point.) If I know so much about prevention, how did I let things get to a point where I needed dental surgery?
Often, less immediate life threatening issues like dental care, are put on the back burner while things like breathing and blood circulation are addressed. While addressing other issues, my gums were effected. Raynaud’s Phenomenon, the cause of my poor circulation, is not limited to fingers and toes. More attention is paid to those areas because they are the most severely effected, but again, Raynuad’s can happen anywhere there’s muscle tissue around a blood vessel. (Scleroderma- such a giver!)
One symptom I often ignored during Raynaud’s attacks was numb tongue. I thought it was stress, and stress is a contributing factor, but it was symptom of another problem: Dental involvement in scleroderma. I could feel the blood being restricted in my tongue, so I knew to take measures to bring blood back to it by moving my tongue around and warming my body. What was going on that I could not feel, was blood flow restriction to my gums.
Most people don’t connect digestion with dental care, but it is becoming more known that digestion begins the moment we see or smell food. ( I’ll spare you an explanation, but if you need it, here it is at Kidshealth.org)
Scleroderma is different for everyone, but we share similar symptoms. Here is what happened to me:
Long before I had symptoms of scleroderma, I was very consistent about the care of my teeth. Braces not only cultivated deep seeding hate of my orthodontist and create such a vivid memory of tooth pain that every time I hear the word orthodontist, I can still feel the pain of metal bands being hammered into my mouth; it taught me I want to keep my teeth in my head and intact. Which was lucky for me. My own gum recession in scleroderma started in 1994, but I did not need my first frenectomy until 1999. Luckily, in 1999 I met the first periodontist that taught me safe, preventive brushing that stimulated blood circulation that helped me keep my gum tissue intact.
Now, here’s the part that is uncertain: Scleroderma is a progressive disease. These progressions can happen slowly or in the blink of an eye. In my case, it progressed slowly, but one of the gingiva in my teeth seemed to recede overnight. It probably didn’t, it just felt like it because there is so much to keep an eye out for in a progressive disease, I can only equate it to playing bingo with 20 cards. Before you know it, Bingo! -It’s time for a procedure to fix it. Good times.
The frenectomies and prevention helped, but the inevitable came. I had my first gum graft in 2001. The Veteran’s Administration covered my surgery by a periodontist in private practice. (I love my socialist health care.) The same doctor who had been doing my frenectomies and teaching me about prevention (also covered by the VA) did a wonderful job harvesting connective tissue from my upper pallet and attaching the tissue. It was a success and the site is still thriving today. The second one I had was at the VA hospital. All VA hospitals are teaching facilities and there was a periodontist on his internship there. He too did an excellent job. This third one was sent out. The periodontist at the VA this time wanted the dental school to work on it. He felt they could better accommodate me.
Now, you may be thinking, “Dental STUDENTS for oral surgery that may have difficulty healing?!! Are you high, Karen?” The answer to both questions: Yes. And not as far as you know.
First of all, students are a joy to work with. They have fresh, open minds. They want to find solutions, not just because they have to be highly competitive, they also care and most important: they are not afraid to ask questions of the patient or those who are teaching them. Everything they do has to be approved by a teaching physician. With medical students we get the best of both worlds: Inquisitive minds and years of experience from their teachers. And it is not an uncommon experience to teach something about a rare disease to the overseeing physician with years of experience. Most of them WANT to learn, but there is always the exception.
There was this time a doctor was convinced I had gout during a hospital stay. He was a podiatrist who had a group of students he was trying to show that I was nuts and had no idea what I was talking about. I may be nuts, but I new what I was talking about. I requested to see a rheumatologist in front of his students. After taking my request, he made some comment to his students that it would be a waste of the group’s time, but he had to humor me because I requested a second opinion.
The on-call rheumatologist came in to see me. He agreed I had an infection that was probably a MRSA flare, which had been clearly documented in my medical history. An hour later, he stopped by with the rhueumatolgy department head, who knew me as an outpatient. He concurred with me and the rheumatologist on-call. I was taken off of the podiatry service and a rheumatologist was now overseeing my case. It’s a common glitch in hospital care. If you have a heart attack, you see a cardiologist. If you have a swelling in your foot, you see a podiatrist. My experience has been that they address the feet separately, instead of as part of a whole. This is changing by the way, but apparently the podiatrist overseeing my case did not get the memo.
The next morning, the podiatrist came back with his gaggle of students. Unfortuanly for him, it appeared he did not see that my chart had been updated. As the students donned their protective gloves and masks which is protocol for patients with MRSA, a student read from my chart that my diagnosis was not gout, but cellulitis and most likely MRSA. The resident was quiet, so I asked if he had any questions for me about scleroderma. (Okay, that was kind of an ego trip, but I did warn you.)
Back to my latest dental adventure: I have no problem working with dental students. Honestly, I work with students whenever I can. I met the doctor who would be doing the procedure at my first appointment at the dental school. She is a graduate student and I think she and the others I met will make great practitioners, because they are already great practitioners as students.
What’s really cool about students is that they have to evaluate everything with a full exam. They have x-rays and records to go from, but they do not just jump in, they take their time. My doctor did a wonderful job on intake. She had questions for me and the resident who was overseeing her work. And because I am 42 now and have the jaded perspective of age, some of these students I just see are adorable- which I hate to say because I don’t want to discredit their professionalism with their adorableness- it’s the exact opposite. It’s their youth, enthusiasm and natural curiosity that inspires me. Not only do I feel encouraged to go forward to the procedure, I feel inspired to learn from them; share what I know with others in early stages of scleroderma, and other diseases that effect gum health. The brushing techniques I have learned, I teach my son. I remind him that pretty teeth are of no use if they wont stay in your head, so take care of your gums. This last procedure, hasn’t exactly stopped him from prying Legos with his teeth, but the seed has been planted and I catch him stopping himself. Yes, these students not only teach me about gum health, they are teaching me ways to scare the hell out of my kid so he continues to have healthy gums. Winning!
So, back to my procedure. I did not eat anything but a protein shake for my procedure at 1pm. I have Barratt’s esophagus, reflux from hell and my epiglottis has been on hiatus since the 90’s, so preparing to be in a reclined position is of utmost importance. My only regret: when the doctor asked me if I would like to use the bathroom before the procedure began, I should have said yes. The lesson: When anyone asks if I need to go, I make a trip whether I need to or not because they know something I don’t regarding how long I will not be able to get up.
I was in the chair for the procedure for over three hours. My doctor (and I will be referring to students as doctors because they deserve the respect- no matter how adorable.) My doctor made sure I felt no pain. She could tell by my body language and eventually just by looking at my eyes when I needed more anesthetic. This procedure is done while awake.
I have heard many people say things like, “I could never do that.” or ” I would just let my teeth fall out.” My reply: Yes you can. And no you won’t. You have to do this things. We all have to do things that seem unbearable, chronic illness or not. I use meditation and deep breathing. I actually fell asleep while my doctor was cutting open my pallet. At first, I felt like a steak, but once I made a fun of it in my head, I reminded myself she has probably practiced on many cuts of meat. She had a steady hand and I could see in her eyes that she was watching every move she made, and looking at my eyes to see my reactions as if she watched my face for clues that would indicate pain or discomfort. Her steadiness was unencumbered by rushing to the next patient. She took the time to adjust to working with a scleroderma patient with a small mouth, Raynaud’s and healing issues. And really, I have been a lab rat more than once to more seasoned professionals than I can count. The great thing about students, is that they don’t second guess. They can’t, because someone checks everything.
Long story short: The procedure went off without a hitch. I drove myself home, parked myself on the couch with my dogs and slept with a little help from Captain Vicodin. I was sore, but believe it not I was not in much pain. The next day I woke up and didn’t need anything for pain because I rested the next two days. I rinsed all week and the following monday, I had my stitches removed by another doctor, because the doctor who did the surgery went home for Thanksgiving. To be quite honest, had it not been thanksgiving week I would have waited to see her when she returned because I wanted her to see her work. But the doctor who did see me did an excellent job and even put up with me panicking the next day.
I freaked out the next day. My skin grafts had always been in a place where I could not see the wound. So, I woke up, took a peek at my gums and freaked out. It looked like it was coming apart. I called the school and they fit me right in for an appointment. The same doctor saw me and an instructor checked it just as was done the day before. They were so cool about it. It went something like this:
“Karen how many times did you check it?”
“Not much…” I replied.
“Stop checking it. It’s healing fine. Parts are going to fall off. ”
There was more to that conversation, but you get the point. I overreacted. Luckily, I did, because on the way home, it felt like the graft totally came off. I left it alone, then later, a foreign object feeling forced me to check it. There was a clump of tissue that came off, stitches and all. This revealed connective tissue adhering to my gum line nicely. Relieved, I settled in for the Colbert Report, but had to turn it off because I laughed so hard, I could feel my gums tug. No comedy for me.
For more information about Scleroderma and dental issues please check out these links. And when you do get to work with a medical student, for corn’s sake, don’t call them adorable!
Coming soon: Prevention tips.
Go to these links for more information.
The Scleroderma Research Foundation: Dental Problems
What is a Frenectomy?
The Digestive System
Raynaud’s and Dental Issues