As a scleroderma patient, I feel this would be my time to list my wishes. Of course World Scleroderma Awareness Day isn’t Christmas. But the last hour in the month of Scleroderma Awareness Month is a great time to make requests. You know how we tell our kids to make a list for Santa, the Great Pumpkin or “NAME HERE”. Because even if there is no Santa, the Great Pumpkin or “NAME HERE”, there is always an eager parent or loved one looking to fulfill at least one wish of many, on a list of wishes. Right now there are researchers working on a cure to fulfill at least one of my wishes. And there are doctors trying to fulfill the wishes of patients around the world. Yes, I am equating researchers and those helping them to Santa’s Elves. They do they work they do because someone, somewhere said, “I wish I could help.”
So, how about the Scleroderma Giraffe? Yes, my “NAME HERE”, being will be to the Scleroderma Giraffe. And instead of elves, the Scleroderma Giraffe has gnomes. (What? You don’t like the Scleroderma Giraffe? Write your own damn blog.)
Dear Scleroderma Giraffe,
First, I would like to say that it is really cool that you are able to have your head so high, then bring it down low to drink water, then bring it back up without passing out. That is really cool.
I have a lot to ask, so I’ve narrowed it down to two.
2. Okay, how about some more of those breakthroughs in research? Thanks for the break throughs so far, and I look forward to celebrating more.
Well, I think that covers it for now. I could go on for days with requests, but I would really like it if you paid less attention to what I’m writing and get back to helping the gnomes with research. I know you are able to read faster because of your giraffe magic, but there are lots of patients who can’t wait one extra minute.
One of many challenges faced by patients with scleroderma:
The effect on the children of patients.
The story is told in the voice of a young daughter about daily life with her mom, who has scleroderma. There is no talk of flares or emergency room visits. I love that about this story. There are plenty of stories of complications and very few are just about a regular day with scleroderma. The scary stories are a familiar occurrence to scleroderma patients, but they are only a part of the story. The long haul with scleroderma really is about acceptance and finding a way to be a part of life with loved ones.
The beautiful illustrations show the pigmentation changes, hand contractures and facial features in a gentle way. Changes from scleroderma are rarely shown in such a gentle light because it is hard to photograph. These illustrations are another welcome change and by the end of the book, the distinctions between characters without the facial features of scleroderma is difficult to notice. As though the illustration makes those features look “normal”. For a scleroderma patient, that is normal and it’s nice to see that blending as opposed to the often harsh distinctions shown in photographs.
Yes, this is a fictional tale, but kids love to help. I see it in my son and I have seen it in other children of parents with or without scleroderma. The bottom line is no matter how sick we get, how crazy things seem to be and how much our kids complain about taking out the trash, they love us and they will help.
We need more stories like this to remind patients and their families that life does not end with a diagnosis of scleroderma. Raise awareness with this book. It’s about Scleroderma, and the very capable child in all of us.
I heard about Chris Dean’s blog, Life Your Way! in June of 2012. Since that time, I try to read her blog every day. It is truly where “Health and Humor Meet in a Head-on Collision”. I am supporting her nomination as Miss Congeniality and I nominated her for Hilarious Health Activist. I am encouraging you to go HERE and vote for her confirmation, or HERE to nominate her.
Okay, now I know that you are no minion and need proof. (I love that about you by the way!) So you can read more about me going on and on about her, or you can just skip to the end and go HERE and read her blog posts. I encourage you to do both, but I understand there is your time to consider. I’ll be brief but I won’t be offended if you head right off to Chris’ blog.
Chris writes openly and candidly. She is brave in her sharing and appears not to be afraid to admit her short comings. In fact, she will point them out to her readers and make them laugh with her. She has no agenda. Sure, all bloggers have a small urge inside them for total world domination; and Chris has told me herself, “It takes a special kind of crazy to be a blogger.”
When I read Chris’ work, I feel I am reading the words of someone who enjoys writing. I feel like she does it because it’s fun and it helps her cope with the craziness that comes with being diagnosed, misdiagnosed, re-diagnosed, etc…
Chris posts every day, whether there it’s NHPBM or not. She doesn’t write about life at her pity party, she invites you to join the party on her blog. Her life, like everyone else, is not perfect. She poses great questions about her health and health topics and brings to light facts about her condition and the conditions of others. She uses humor to teach and it is her talent. I always feel better after reading her posts. I have learned about things like; birding, alternative methods of yoga- and Joe My Zod, have you seen her artwork?!! (Ah, WEGO, consider this my suggestion for an art category next year!)
Chris calls her art therapeutic for her, but to those like me who admire it, it is a gift of expression. When I look at her art, I FEEL something. It is a representation of her feelings and thoughts, and her art makes me get a feel about what she’s feeling. And I look at many and think: I feel like that too. I can’t put it into words, but I can show you some of the things I feel with her art work.
I could go on, but honestly, experience it for yourself if you haven’t already. Read her words, see her pictures. Everyone has their own reactions to art and words. I know that if you take the time to check out her blog; you will laugh, you will learn, and I hope you too find something she has created that explains something you can’t describe in words.
Chris’ Blog: LIFE YOUR WAY!
Facebook: Invisibly Ill (show some love with a like)
Thanks for sticking through all the crazy things going on. You have been there for me through thick and thin. I have often heard from doctors, “With all you have going on, you are very healthy.”
At first, I thought these doctors were nuts, then I had a kind of awakening. After 18 years since my first diagnosis and 22 years since my onset of symptoms, I’m still here. Health, you have been enduring an onslaught of attacks from the complications of scleroderma and sarcoidosis like; contracted hands, Raynaud’s, difficulty breathing, limited range of motion and near death experiences: but with every setback, I recover by adapting to the changes and doing everything I can in my power to stop progression because of our combined strength.
I may sound overly happy and kind of sucking up to you right now, but I really feel that the diseases, scleroderma and sarcoidosis are just a part of my life. Without other aspects of my health that existed, my body would not have been strong enough to handle what came my way. Yes, my hands are severely damaged. Yes, my lungs have parts that are scarred by pulmonary fibrosis and my depression was at one time was life threatening. We both almost lost our fight then. I was so disappointed, you joined me and we stopped eating until we nearly starved to death. But then, we went and got help with our depression. It wasn’t and is still not always easy, but you fought back and kept me moving to get the treatment I needed. You, Health, kept me stubborn. Stubborn and pig-headed. Just ask my mom and dad and my Aunt Vicky and a barrage of cousins. I have one hell of a stubborn streak and you and I both use that stubbornness to keep going. Yes, it’s good to be a Scorpio.
In 1996, when my fingers were covered in ulcers, you kept the rest of my body going. Somehow, I had the strength to get the help and treatment I needed four hours away at the Veteran’s Hospitals in Madison and Milwaukee Wisconsin and saved most of my thumb and the rest of my hands. I kept smoking and eventually you smacked me upside the head and made me quit smoking in 1998 by remaining patient as I smoked less and less. I’m not even sure the exact date I stopped because you gave me time to phase smoking out of my daily habits and cigarettes became an afterthought and inconvenience. Thank you for not giving up on me.
When I was pregnant with my son, you made it so I had seven months of feeling like I had no chronic illness. It felt good. It was short-lived, but I enjoyed it and that seven months inspired me by giving me hope that feeling good was possible. Health, thank you for the warning signs of seeing orange spots that got me to the hospital and saved both me and my son’s life. I had no idea my blood pressure was so high, but after all these years of listening to you, I have learned to take a hint. I do wish we could’ve lowered my blood pressure before the c-section so they could’ve told me I had HELLP Syndrome, another pregnancy would most likely kill me and ask me if I wanted my tubes tied, but hey- I’m cool- we’re still here aren’t we?
Health, you can be demanding. You are not shy about letting me know I’m not eating well by throwing my GI track out of wack to get me on the right diet or eating style. I know at first, we both didn’t want to change our diets and all that scar tissue I didn’t know was covering my esophagus allowed us to enjoy jalapeños during the first trimester when pregnant. We’re not perfect. Oh such good times, but we learned our lesson, didn’t we? Thanks for hanging in there while we worked together in speech therapy to develop good habits and keep food going down the throat and not into our lungs.
Remember when we did yoga every day for over a year and regained the ability to walk barefoot and better range of motion? Such good times. Thanks for hanging in there while I try to get back on track. I have really been slacking, but I know you are going to help me get through this and we will both enjoy the rewards that come with it.
Health, we’ve been through a lot together. Thanks for fighting with me and not giving up. We’ve got about 50 years to go so we can see our son go to Mars and meet our grandkids. Thanks for continuing to fight the good fight with me. Together, we will continue to kick scleroderma and sarcoidosis’ asses and be around to see their names taken and followed by: Cured.
I have had many conversations with many doctors about my prognosis and treatment. There are times these conversations are redundant. Not in a bad way, it’s because there are times when there are no changes in my symptoms or blood work, which in my case has usually been a good thing. Why? Well, it means things are not getting worse at that time.
Because I see my specialists four times a year, it means I have many appointments. How many specialists do I have? Well, there’s rhematology, pulmonology, gastroentorology dermatology, podiatry, occupational therapy and psychology- you now to help me manage dealing with all my specialists. Then, there are appointments for tests that these specailists need, to keep up with what my body is doing; pulmonary functions test, twice a year; echo cardiogram once a year; and my personal favorite, an upper endoscopy. That’s where a doctor sticks a camera down my throat. I say that because I usually wake up feeling very happy. The sedatives they use on that test get me a little silly and if I have to have crazy tests, I might as well enjoy a buzz every now and then. Okay, aside from my chronic illness monitoring, there are my regular yearly visits to a primary care physician for regular check-ups, then my OBGYN for my lady-parts. Long story short, I spend a lot of time with doctors, nurses and healthcare providers.
It’s not all that bad. Once, I had a gaggle of test results from the VA Hospital to share wth my doctor at UCLA. I requested and received a disc with those tests, brought my laptop and some snacks to UCLA and spent an hour reviewing the tests with my Rhuematologists. I learned a lot about what the tests meant to my health and my doctor was able to enjoy a snack. (Seriously, if you can, feed your doctor they do back to back appointments all day. It wouldn’t kill you to throw them a snack every now and then. Sometimes, I just grab a candy bar on my way in. But only for your favorite docs. You don’t have to be slutty about it.)
What were we talking about? Oh yeah talking with our doctors. For me, talking with my doctors is easy. If I don’t understand, I ask questions. I have had some weird appointments, but after 2o years of this, they all kind of run together and I just remember ones I learn from. The tough part for me, is repeating what I have learned to my family.
And now, we can get to my favorite question, “So… What did the doctor say?” It feels like a trick question. When asked, I’m not sure what people mean. Do they want to know my blood work numbers? Do they want to know every word that was said? Which doctor?
Yeah, my attitude can be considered somewhat crabby and I wouldn’t be offended if it was thought of as downright bitchy, but I can never give the right answer. The people who ask me that question, love me very much and they want to hear good news. Often, I have nothing new to say from the last appointment. Sometimes I learn something so exciting, I use latin based words. Once an ex-boyfriend replied, “Stop trying to sound like a doctor. You are not that smart.” (Hence the title, “ex”.) Seriously, dating has given me so much material, not about men, but about ignorance, sheer stupidity and downright douche-baggery (thats ignorance with malice), but I digress.
Back to my point: It used to be disappointing to not be able to relay to loved ones that things were not getting better. They were either stable or going in an unknown direction. So many times, the result of my appointments are, “Okay, we know something, let’s see where this something goes.” If I had to hear that about my kid all the time, I’m not sure how I would take it. I believe that if you truly want to torture a person, hurt their child. That’s what chronic illness does to parents of children with a chronic illness- no matter the age of those children.
Because I plan to live at least another fifty years, I had to find a way to make reports about my doctor visits not so uneventful, less uneventful when reporting to family. Everyone needs encouragement, but I didn’t want to do it by providing false hope either, but I accidentally found a way.
I’m not sure when I had this conversation with my mom. I do know it was before my sarcoidosis diagnosis. It went something like this:
Mom, “So…. What did the doctor say?”
There had been no change in anything, so this just sprang from my mouth, “Mom, the doctor said I have scleroderma.”
There was a pause, then my mom started laughing. I was so relived. I found a way to make my mom laugh. Watching my parents worry and wait is not easy, but I have it easy compared to their worry about my health. Making my mom laugh made me feel good. I used the same response on my dad and he laughed.
It wasn’t just making lemonade, it was taking lemons and squeezing lemon juice back at Life’s eye. (By the way, I totally ripped that off from the cartoon, Gumball)
My sister Andrea is part Mary Poppins, part MacGyver with Moves Like Jaggar. She is organized, energized, a true Virgo and I am proud to call her my little sister. I’m not featuring Team Joey in my first Fundraiser Spotlight because my sister Andrea has incriminating photos: I’m featuring Team Joey because my sister, Andrea Brookshore, is one of Joey’s Angels.
A Community Comes Together
Joey’s Angels is the team behind the scenes, organizing the activities of Team Joey; a small community in upstate New York, that has come together to raise funds and help eleven year-old Joey’s family pay for his life saving medication and expenses. Joey’s Angels organize events, make phone calls, inventory donations and keep Team Joey running like a well oiled machine of love and support to Joey’s family. Joey’s Angels know the well being of his family is just as important as his cancer treatment.
Falling Through the Cracks
In addition to Joey’s diagnosis, his parents Holly and Ben, were devastated to learn their insurance only covers $5,000.00 of prescriptions each month. Joey is in stage 2A of Hodgkin’s Lymphoma. That means Joey has “involvement of two or more lymph node regions.” (National Cancer Institute). The urgency for treatment is obvious, but at $3,500.00 per dose, Joey’s chemo is the tip of the iceberg. Joey’s family has to travel three hours one-way for treatment, while maintaining two incomes to put food on the table and keep their house and manage a “gift with purchase”: The overwhelming worry of loosing a child and brother to cancer.
Joey’s family is one of many who fall through the cracks. They don’t qualify for Medicaid because their income is to high; and they certainly do not have the cash to cover the expense of paying for treatment up front. That’s right; payment for treatment is required up front. They don’t get billed for chemo shots and Joey doesn’t receive his life saving treatment before payment is made in full. Luckily, Joey and his family have a fleet of angels.
Joey’s Angels, have taken the Team Joey Facebook Community, from zero to 486 likes as of 10/18/2012 at 9:29pm- less than three weeks after launching. But this Facebook page is about more than just getting “likes”. This page is filled with the pictures and prayers of a small community working hard to lighten the load of one family. There are pictures of the recent can drive, items for raffle and updates about Joey’s progress.
What strikes me most about this community is watching human beings at their best during the worst of times. There is nothing fun about watching a family cope with cancer, but I see a community “Dancing in the rain.” And this Saturday, dancing is exactly what will happen.
This Saturday, October 20, Team Joey is dancing in a Zumba Fundraiser for Joey’s treatment and family’s expenses. There is nothing more painful to a parent than the helplessness of watching your own child fight for his life. But because Ben, Holly, Hanna and Joey have the support of Team Joey, I have unyielding hope this family will prevail intact. The load of things like expenses will be lightened by the help of their community, giving the family time to focus on each other, where their strength is needed most.
Holly, Joey’s mom, is a Zumba instructor and while she is at home with Joey and my nephew Oliver, her teaching partner, Dani will be leading over 300 people in a Zumba class with Holly’s husband Ben and their daughter Hannah. In this way, the community will be putting their minds and bodies in the game, if only for 90 minutes. Nothing is more powerful than souls coming together in dance. Humans have been doing it for millennia for a reason. It’s not just 90 minutes of dancing; it’s 90 minutes of empowerment that will strengthen the bond of this community. There will still be still more work to do when the music stops, but for 90 minutes, more than three hundred people at a school auditorium in Upstate New York, will cry out in one loud voice “No!” to the cancer in Joey’s body. Dancing in the rain of tears, prayers and love.
You and I may be reading about Team Joey a few thousand miles from the Zumba Fundraiser this Saturday, but we can help through the power of social networking. Share this story. If 500 people read this post and 100 of them can kick in $3.00 each, that’s $300.00. Imagine what could happen if 500 people share Team Joey’s page. There is no such thing as a small act of kindness. Visit and “like” Team Joey’s FaceBook page and see how you can make a big difference with a small donation. If you live nearby, you can participate in the Zumba Fundraiser, upcoming spaghetti dinner, raffles and events in the works. Joey’s fight has just begun. Please join Team Joey and make a difference.
About Hodgkin’s Lymphoma and the Possibilities of Successful Treatment
Hodgkin’s Lymphoma is one type of cancer with many stages and types. It can occur in children and adults, which makes Hodgkin’s Lymphoma is an equal opportunity destroyer. Follow the links to learn more. Cancer research has created the possiblity for treatment of other diseases; such as immunosuppresants for autoimmune diseases, better treatment of medication side effects and complications, patient care and caregiver education in not just cancer, but all illnesses. Progress in cancer research helps all, and we are in this together. Cancer gets a lot of publicity, but it ‘s not enough because people still die of cancer. Now that there is treatment to put cancer in remission, large amounts of money to pay for life-saving treatment is now needed because patients like Joey, are falling through the cracks. Join us and support the fight for Joey’s life. Thank you.
Links to Join Team Joey & Learn More About Pediatric Hodgkin’s Lymphoma
Edited 8/31/2012 I felt that my original post was a bit hard on the doctor. I don’t mention him by name, but above all he is human and a fellow patient. This experience is not just about me, but about me coping with the world around me. Sometimes I do so in a way that seems funny to me, but can hurt others. I could not sleep tonight without editing out my judgement of this doctor’s mental state. I did not know him and although I disagreed with him strongly, I have a great deal of admiration of him because of his accomplishments. He did what I could not do. Have a career in medicine while living with scleroderma. My original post criticized the doctor’s feelings about his own health. He did not have to share his condition with me, but he did.
In 1999, someone well intended city clerk got one number wrong my address. Three months ago, the City of Murrieta decided it needed to be fixed. It was a smooth transition, but not without hiccups. A substitute mail carrier unfamiliar with my address issue, accidentally sent back my depression medication. So on the day of my appointment this past Friday, I had been two days off my depression medication. The VA is 41 miles from my house and I figured waiting an extra day wouldn’t hurt because I felt very stable. That will be the last time I make that mistake.
I woke up feeling good. I had time before my appointment to have a very productive morning. I found a parking spot right way at the VA Hospital and I was on time to my appointment. I originally thought I had an appointment to see a podiatrist, but I was pleseantly surprised it was an appointment for Physical Medicine and Rehabilitation.
My Rheumatologist at UCLA recommends treatment to my Rheumatologist at the Veteran’s Hospital. (Who by the way referred me to UCLA when he ran out of ideas in 2005.) This is something named by the VA as managed care. This is when a VA doctor co-ordinates with another specialist outside the VA Health System. It is helpful to Disabled Veterans who live far from Veteran’s Healthcare facilities and too many reasons to list. (Click here for more info)
Because of the treatment prescribed by Dr. Furst at UCLA and the VA Healthcare System’s outstanding implementation of his recommendations to the letter, I have a stable condition. (It took me 16 years to get here, so please don’t give up if it hasn’t been easy. ) Because of my stable condition thanks to treatment of scleroderma and sarcoidosis, my rheumatoligists at the VA Hospital agreed with me that this might be a great time to get me back into some OT to see if we can improve my finger mobility. After fighting an OT for years about getting them to at least TRY, I had a rheumatologist who was going to order passive range of motion, if only for a short time because he agreed it was worth a try. Needless to say, I was pretty excited. This would be easy. The physical medicine doctor would evaluate me and with my enthusiasm and rheumatologist’s recommendation, he or she would have no problem issuing the Occupational Therapist to at least TRY. But alas, when the medical assistant led me into the doctor’s office, it felt like my hope had been thrown into the air like a clay pigeon and shot.
The door swung open and I could see the doctor had trouble walking. I noticed what I thought to be symptoms of scleroderma. It looked just like my thumb, which I had lost the top of in 1996. His fingers had mobility, but he still typed with two fingers. It could have been his style of typing. I had no way of knowing. He clearly did not recognize my visual symptoms of scleroderma. I was afraid to ask him. My chart said Lupus and not Scleroderma. (There’s a record glitch I need to fix, but thats for another post.)
I was a little encouraged. I was happy to see he continued medical school despite his obvious medical hurdle. Unfortunately, the more we spoke, the more I realized we might not be a good doctor/patient match.
It’s not that I don’t believe scleroderma patients would make good doctors. I think they would make good doctors, but to be a good doctor, one must know the difference between empathy and projecting his or her situation on to another patient. I perceived he was projecting his condition on to me and I was projecting my own condition right back. Yes, he was the doctor, but he was prepared for a Lupus patient,not someone with scleroderma. For our purposes here, his name is Dr. S.
Dr. S began, “Oh, I see you have scleroderma.”
“Yes, since 1992.” I replied.
“I had scleroderma.”
“Really? How long?”
“Seven years, but I don’t have it anymore.”
I didn’t even want to now why he thought he did not have scleroderma anymore. This was my appointment and I could tell by his body language he was no longer thinking of what was best for me. He started asking me about my surgeries as he sipped from a cup from McDonalds. I also noted the smell of McDonald’s french fries and the McDonald’s bag next to the keyboard on his desk. At this point, I thought about my issues with denial when I would eat things from fast food places and then wonder why I felt so swollen later. While I was taking note of what I perceived as his denial and poor eating habits, he was trying to help me with his own experiences with scleroderma. Looking back, it seemed like a great big projection-fest.
He asked me about my diet. I told him I maintained a high protein diet, drank protein shakes daily because it helped with my absorption problems. Then he started to tell me how his scleroderma went away when he became a vegetarian. I suddenly realized I picked the wrong week to be out of anti-depression medication.
The good news for this doctor was, that I have had enough meltdowns to know there are times not to have them. He was clearly coping with a progressive, degenerating and soul sucking disease. My care was important, but I was not in crisis and I have been doing this long enough to know how get to see another doctor to achieve my objective. So, I sat and listened and refrained from commenting. I will include some of my thoughts during our exchange, but I’m not going to waste your time with a string of “F” bombs.
Dr. S. began, “I had scleroderma for seven years. I stopped eating meat and I don’t have it anymore.”
“This finger was bent like yours.” Dr. S. showed me his index finger with the tip missing and wiggled his finger and continued. “As soon as I stopped eating meat, my finger was fine.” Then he bent his finger showing off his mobility.
“Oh and you should eat vegetables. They will help you.”
I was about to use my “Hot Dog Down a Hallway” analogy about my digestive capabilities, but he insisted on continuing.
“Passive range of motion won’t work. Just eat nothing without an eye and your range of motion will return, just like mine.”
I decided that trying to tell him otherwise would be a waste of my time.
“Thank you doc, I’ll try that. Why don’t you just give me a referral to Occupational Therapy for some adaptive equipment.” I told him.
I was happy something productive had come out of our appointment without any shouting or cursing. I walked out of the office and headed straight to the Behavioral Health Department to handle the antidepressant issue. It turned out, I was the cool cucumber I thought I was.
By the time I got to the Behavioral Health Department, I was doing some sort of weird hiccup noise trying to hold back my emotions. I told the clerk I just needed to get a refill of my antidepressants. I told her about the mail situation and as soon as I can get this started in the pharmacy, I will go into the bathroom and finish my emotional outburst.
The clerk behind the appointment desk said, “Stay right there.” and ran after a doctor who was obviously on her way home for the weekend. They ran down a list of doctors between each other who were supposed to be on call that day. When they ran out of names between them, the doctor who was about to leave looked at me very kindly and said, “Come with me.”
I thought I was appearing calm, but that involuntary squeaking noise that I kept making would not stop and started becoming more and more frequent. Apparently, I was having a meltdown and suppressing it so well inside my head, the meltdown had taken on a life of its own and manifested itself outward. Looking back, I’m a little impressed by my own body’s ability to cry out for help without my permission, but I digress.
The doctor took me into her office. She sat down at her desk, pulled up my file and ordered an immediate renewal of my medication. Then she stood up, looked me in the eyes and asked the 5150 questions.
“Are you suicidal?”
“No.” I replied.
“Are you homicidal?” I paused briefly and considered a joke about the doctor I just saw, but being one wrong phrase away from a 72 hour hold, I answered, “No.”
“I can’t let you leave like this.” The doctor asked again, ” Are you suicidal?”
“No, I just want to get this prescription going so I can go calm down while it’s being filled. I promise, I’ll be fine.”
She walked me out of her office to the appointment desk to make the appointment. I paused, then headed straight for the pharmacy and left the office. By this time, I was just making a noise I can only describe as a squeaking sound with every breath. I had to get out of the Behavioral Health office and go back and make the appointment after I had calmed down, but first I needed to get the ball rolling for my meds.
I skipped the elevator and took the stairs to the first floor. I just kept my eyes forward, moved quickly and made no eye contact with anyone. I reached the pharmacy, took a number ticket and found a chair next to a wall behind a corner where I sat and waited for my number to be called.
The chair was broken. The backing had been split open but because the chair was wedged into a corer, the wall worked fine and gave the chair a recliner “feel.” I leaned my head to the right, resting it on the wall next to me. It was not a completely private space, but I felt protected as I leaned back against the wall that was the side of a pharmacy pick up window, which was thankfully closed. I closed my eyes and just listened as each number was called. Then I felt a gentle touch on my hand. I looked and it was like looking at an angel. She had beautiful brown skin and and I could see the concern in her eyes.
“Are you okay?” The angel said.
I looked back at her and said, “Yes, I just need a moment. It’s been one of those days.”
“Okay honey, if you need anything, I’m just right over there.” She pointed behind me until I turned to see where she would be. I could see her VA badge, she must have been staff, but like me, she held a ticket with a number. She was staff and she was a veteran picking up a new prescription.
“Thank you for taking the time to ask me. I really do appreciate it. I’ll be okay.” and she thankfully returned to her seat.
And I really did appreciate it. I was not looking for attention from anyone. In fact, had I been there with someone I knew I would have made them wait in the car. One of the reasons I prefer to be alone is because appointments can go wrong and although friends and family want to help, their feelings of frustration radiate so strongly, I can feel it. It can make my task of staying focused on what needs to be done that much more difficult. It doesn’t take long for me to resent their attempts to comfort me. I feel like they are making it a bigger deal than it is. They really are they are trying to help, but I don’t want to hear their ideas or see their worry. That must sound awful to my friends and family, but I have been doing this so long, this stuff isn’t such a big deal to me. But to those who love me, it doesn’t take much for them to worry. I might feel the same way in their place. Now back to last Friday’s adventure:
So, I eventually talked to the pharmacist to get my prescription going. He told me it would be ready in fifteen minutes. I walked straight to nearest bathroom, locked myself in a stall and cried for about two minutes. I was doubled over and pretty sure people could hear me outside. Then, as though by magic, I felt better. The weight of the world was off my shoulders. I stood up straight, took a deep breath and felt calm. It was as though the anger had left my body. By retreating to the bathroom, I gave myself permission to let out my feelings without holding back. Those feelings left and one week later, I still feel as though I left my anger in that bathroom. I just released my anger to the universe.
As for my leaving the Behavioral Health Department, I returned to the appointment desk. I made sure the doctor who asked me the 5150 questions saw that I was okay. She smiled and nodded in approval as she passed me. I made my appointment, picked up my prescription and headed home. It was time for The Big Lebowski, popcorn couch therapy. Enjoy this Clip.
So, maybe you’re skeptical about hearing what Bob Saget has to say about Scleroderma. Maybe you’re thinking, “What could an actor/comedian possibly have to contribute to the scleroderma patient community?”
Well, for one, he lost his sister to the disease. Also, he’s on the Board of Directors at the Scleroderma Research Foundation.
Sure, scleroderma is hard for patients, but what about those who love them? The truth is, it’s just as difficult for them to watch, as it is for us, the patients- to fight. I don’t mean to make the patients’ fight appear less painful or easy. Let’s face it, patients know how painful it is and I am stating the obvious. My point is about the emotional pain of having to sit and helplessly watch someone fight one battle after another for their life. Sometimes, those doing all they can possibly do, have to watch those they love lose their fight. Like many brothers would do, Bob Saget did all he could to help his sister, yet still lost her to Scleroderma. Bob Saget is not alone. He just happens to have a microphone and a camera and is using them to raise awareness and funds for research.
I have one brother and one sister.
I am also a member of an insanely large extended family that requires a map for visitors when they dare come to a party. My family and friends love me very much. Since my diagnosis in 1994, they have been doing everything they can to help me. It is hard for me to watch them feel helpless. I feel loved but I also sense their frustration. As a parent, if my son had to fight a disease, I would cut off any part of my body or gladly take his place to make him well.
Friends and family members need a cure just as much as patients who have scleroderma. Bob Saget is going to help get the message out. Tune in this Thursday at 11AM PDT. I will be watching and listening You’ll need a phone and an internet connection. Visit the Scleroderma Research Foundation’s website to register: