If you’ve been reading this blog much at all you should know by now that I’m pretty well sick. Sick enough, in fact, that it’s incredibly painful and difficult for me to get up, get dressed, and venture out into the world. Every now and then I have to do just that for the sake of finding a new surgeon to help fix me so I no longer have to spend my days stuck in bed. Today was just one of those days. My Mom has been contacting as many surgeons as she can find listed through our insurance company, talking to them about whether or not they can help me. She has whittled the list down to the point where I only had two surgeons left on the list who were even willing to meet with me. The surgeon I had an appointment with today talked with my Mom two weeks ago, said he definitely took our insurance, and that he had experience handling this sort of thing, and that he was more than willing to meet with me. So great, everything was lined up; my Mom even called a few days ago to confirm the appointment. All was well.
I get up after very little sleep, I get dressed despite feeling crappy, and I head out. We get to the office and even though the door is open, no one’s at the desk. We sit down, we wait, and wait, and wait… then suddenly, this guy comes out dressed in scrubs – not the doctor whose picture we saw on the website – and says, “I’ll be with you in a minute…” After an awkward pause, he looks up and says, “Hasn’t the nurse been out here yet?” We shake our heads as he goes, “Oh,” and then disappears again. A little while later, the nurse shows up in a tissy, explaining that their receptionist didn’t show up and blah blah blah. Like I wanted to hear that the doctors’ office I’m entrusting my life to is that mismanaged – thanks.
It gets worse. This nurse is still looking at me like I’m a weirdo – you know, that look of, “Who are you and what the hell are you doing here?” That’s a little confusing when you have an appointment. She asks me my name and asks why I’m here, so I give her the spiel – “I’m Heather, I have a three o’clock appointment for a consultation regarding Dercum’s Disease.”
As usual, I get a bizarre look in response to that, but this one had a little something extra. She asked me to spell my name, looked at her monitor, and said, “Um, you’re not in my computer.” Here comes another blah blah blah about how their computer’s been acting up and she doesn’t know what’s going on cause their receptionist didn’t show up, et cetera. But to top all that silliness off – after suggesting that I made the mistake and that I was in the wrong office, despite all the times my Mother confirmed – she looks at me and says, “Really, I don’t know why you’re here anyway, we don’t even accept insurance for any sort of operation like this.”
Fabulous. They either were just trying to get me out of the office to continue whatever it was Doctor and Nurse were doing in the back room, or they were pulling a remarkable bait & switch on unsuspecting patients. I’ve heard of this happening before, but only in vague terms. Doctors tell you again and again what you want to hear, they’re even listed with insurance companies. But once you get into that office, the story changes, and suddenly you’re stuck with a bill that you have to pay in cash. I’m sorry, but isn’t that what I have insurance for? And hey, isn’t that what you said you’d take care of?
I nearly lost it right there. I was so tired, so fed-up, so exhausted, in so much pain, and just generally miserable, that I came this close to crying right there in the office. I wanted to yell at her, telling her in graphic detail just how difficult it is for me to put clothes on, how humiliating it is for me to walk out of my house looking so hideous only to have to explain to some doctor how I’ll die from this disease no one cares about, how frustrating it is that plastic surgeons seem to be such cold heartless bastards, and how her boss was the supreme example of just what’s wrong with plastic surgery in this country and how it’s dinks like him that make this process of searching for life-saving treatment so incredibly painful and difficult for me and other Dercum’s patients. I wanted to flick her off as I stormed out that door, and believe me, that’s really, really unlike me.
Instead I restrained myself, said simply that I was leaving, and I walked out the door. As my Mom and I approached the elevator, she decided to go back and find out exactly what the hell happened. I went down to the car and tried to ignore what just happened. I needed to calm down – the night before I’d made myself violently ill simply because I was stressed out. My stomach can’t take it anymore, I can’t take it. My body just starts giving up.
Of course, my Mom didn’t find out anything from the tight-lipped blonde bimbo. Big surprise. Just like most people, they’ve been trained to look sad, repeating, “I’m sorry, I understand…”, all while messing you over. The words come out, but the meaning isn’t there, which only makes it all the more insulting.
I’m mad. This is pointless. I’ve gone through so many plastic surgeons, and again and again I am met with nothing but used-car salesmen in white coats. The plastic surgery industry keeps talking about trying to improve their image, trying to promote the fact that they do more than just boob jobs and face lifts. They won’t get far if they keep certifying these hacks, if they keep putting people with life-threatening illnesses through such hell.
It’s time to put my google ranking to good use. If you live in Northern Virginia and you need a plastic surgeon, avoid Chrysalis Plastic Surgery in Sterling, VA like the plague. The doctor there is Peter S. Klainer, and his staff couldn’t be any less professional. Thank God I still have one appointment left, with the chief of plastic surgery at Johns Hopkins. At least I know Hopkins takes my insurance, but that’s no guarantee anymore.
I really hate this. I’m sick of life passing me by again and again, while I’m stuck on the sidelines. Hell, I’m not even on the sidelines because I can’t even see it go by. I found out today that my former partner is producing a TV show much like the one I’ve been working on, just with slight tweaks here and there. Nascar’s about to debut a show about their new drivers. Not only am I sick, but I’m getting screwed out of my dream, one that I could have accomplished if I hadn’t gotten sick. Nothing ever lets up, does it? It seems some of us are destined to be almost there, to have these great schemes and the brains to make it happen, but fate says no before we even have a shot. Ten years. Ten damn years of this. March is the anniversary, I don’t remember the exact day. But ten years ago I was shafted by a used-car salesman doctor who gave me the bone infection that started all of this. And it’s still happening today. What reason should I have to believe that it’s ever going to end? People try to reassure me, telling me I’m great and I’m smart and whatever, but that doesn’t amount to anything when your body gives up on you, when God doesn’t even give you a fair shot.
It’s hard to know what to say when you’re constantly faced with such frustrating and heartbreaking situations. I don’t blame you for wanting to go off on the nurse. Had I been in your shoes (or along with you at the time) I would have, to quote Al Pacino, “taken a flamethrower to this place!” I wish I knew what to say or do that could help the situation get a little better, but all I can offer is to try and make you smile as often as I can, laugh as loudly as possible and know that you have many friends out here!
Have you asked other more reputable plastic surgeons about doing your case pro bono (eg: free)?
The frustration and anger in your entry is very clear, and perhaps, given the circumstances, ever understandable. HOWEVER, in life, we are often not provided with the things we think we ought to be. In life, many people suffer for reasons beyond their control, and many people live daily with debilitating pain. Not all of them grow angry and bitter. In fact, many of them, myself included, have learned instead to find the joy in the world, garnering an attitude of gratitude for all they do have.
Your affliction is not your choice, and certainly, no one is going to claim that suffering through the painful tumours, judgement and ridicule is a fun row to hoe. You do, however, have the power to choose how you will react to these bumps in life’s road.
Wayne Dyer, a non-fiction writer that has gained national acclaim, speaks about this type of instance when he states that we, as people, can not feel bad enough to change anything. No matter how sorry you are this happened to you, how angry you are at God, how misersable you feel…none of those emotions are going to erase Dercums from your life. The ONLY thing you can do to improve your life is to take a different view of it.
Regardless of the pain, you still have a body to feel. Regardless of the frustration, you will go home to a bed tonight, and food to eat. Regardless of your anger at God, you will still learn the lessons you were put here to learn if you allow yourself to.
When I was forced to accept the fact that I’d never walk again, and that I’d be in chronic pain for the remainder of my life, yes I was mad. Frankly, I was damn mad!! Here I was, a single parent, and I couldn’t so much as take my little one to the park to play!! I rumbled for many months about how unfair the whole thing was, and how hard done by I felt. In time, however, I learned to just be grateful that I have friends in my life that are more than willing to help me when I need a hand. I learned to thank God for the blessing of my little one, and, believe or not, even for the blessing of now being home to care for her. It may not be what I would have chosen for my life, but that won’t change the fact that it is my life. All I have the power to change is how I choose to view it.
Good Luck!!
Dee.
This blog used to be interesting. But it’s devolved into “world revolve around Heather”. Maybe it’s always been that way.
Hard to feel too sympathetic for a girl that is so damn self-absorbed, selfish, full of herself and her opinions, spiteful (ready to sue anyone that gets in her way) and oblivious to the big picture that is the world.
After reading about all the cheeseburgers and root beer and ozzie rolls you once made part of your daily routine, I have to wonder if you being fat isn’t your own damn fault. Dercums may be what’s wrong with you, but maybe not. Try being a vegan for a while. Try going on a whole-grain, whole foods diet. Get out of bed and go for a long walk, every day, however painful. Or go for a long swim, every day — your fatty tumors will thank you for it, and the water won’t irritate them (and even if it does, tough). Focus on the positive aspects of life. Take that great camera of yours along and get busy noticing what’s great in the world. Go to college and meet people (and quit making excuses). Finish writing the book you once started. Just quit whining. It’s tiresome. We want the old Heather back. The one that helped kids and fought the good fight and was going to change the world. Not the one begging for presents and longing for ferraris and the next bottle of perfume. Sorry to rain on your parade. It’s just getting old. I saw the real you once, and I liked her. Bring her back, please. Blaming others is a dead-end road. Pity parties are no fun to attend. Grow up and move on.
Ellen—How sad that you cannot relate at least a bit to someone in serious pain, watching their body change involuntarily. Who are you to judge and decide how anyone else should go through the grieving process of watching their world spin out of control? The diagnosis of a chronic and potentially fatal disease requires that the individual go through all of the stages of grief. True friends (or compassionate human beings in general) understand that and make suitable allowances.
It is obvious that you are ignorant about the ramifications of the disease Heather is dealing with. “Walk”, “go to college”, “swim”–all fine answers for an able bodied person. Maybe even good advice for a temporary ‘slump’ in emotions. Idiotic and hurtful to someone who is in excruciating pain!! If you were the least bit knowledgable about Dercum’s you would know that exercising actually makes the disease worse! And to blame the victim? You are a sad and cruel person.
Do you really think that Heather prefers lying in bed watching her body grow and getting more painful by the day? Can’t you at least attempt to empathize? Can’t you understand that she would much rather be taking on the world, racing cars, meeting people, maybe falling in love, going to college, doing all of those things that able bodied take for granted?
Remember, a blog is merely an online journal. It, rightfully so, reflects the ups and downs of a person’s life. If you can’t tolerate the pain, please do go away. And take your ugly, rude and cruel comments with you.
Hey Ellen–Try this experiment for a week. Then, come back and report on how you feel when it is dark, lonely and all you can feel for the moment is pain. Remember, you must put on a happy face as much as possible. You must remain positive, upbeat and hopeful. You try to take care of yourself along the way, but thank everyone that helps you all day long.
1. Purchase twelve 5 pound bags of potatoes.
2. Attach a variety of painful objects to the potato bags. Sandpaper, rocks, wooden blocks–anything that will feel REALLY good against your skin.
3. Tie the potato bags onto your body. For full effect, tie them on under any clothing you have on. One bag should go on each upper arm. The rest can be distributed hanging from your neck, strapped to your thighs, onto your abdomen and anywhere else they will fit.
4. Attempt to put on clothing. For full effect, the clothing should be feeling like it is choking you and pinching every tender spot on your body.
5. Hit yourself really HARD on the head. This should give you a headache just slightly like a Dercums patient. If you head doesn’t really hurt, put it in a vice. That’ll help experience the headache that comes from having Dercum’s and an Arnold Chiarri malformation.
6. Take a bunch of Benadryl to simulate the mental numbness and confusion that occurs.
7. Put some rocks in your shoes. Nice pointy ones would be good. Tie the shoes up really, really tight
8. Bind your joints really tight so that they ache and it is difficult to move.
9. Put on several winter coats on and turn the thermostat UP. You want your core temperature to reach about 102. That might simulate the horrible feelings of heat. If you stop sweating, you might want to stop this part of the experiment.
10. Eat only 1000 calories a day. Every day. And yet step on the scale and see yourself gaining several pounds each day. Each pound represents another inch or too of body mass.
11. Try to put on something attractive. Try to hide the lumpy nature of your body and be certain to maintain that positive outlook on life.
12. Think about the fact that the fat on your body (simulated by a potato bag) could likely attack internal organs. That’s fatal–as in sorry, you are dead! Of course, your heart or a vessel in your head might decide to give out first.
13. Walk up the stairs. See how winded you get. If that doesn’t wind you, try running up the stairs—that’s what it feels like to breath. When you are sitting down with Dercum’s.
14. Turn up everything in your house really, really loud. That is the acute and painful hearing of a Dercum’s patient.
15. Call 45 plastic surgeons and have them tell you, “Sorry if you have a fatal disease, we only want to do cosmetic procedures.”
16. Fight for five months with insurance companies who, though they do finally relent, tell you, “Sorry it is fatal, we don’t cover that.”
17. Cancel anything fun, exciting, rewarding, challenging or joyful in your life. Cancel any vacations you had planned. Cancel visits by family members.
18. Give up your spot at a prestigious university. Try to take other classes and find out that your IQ that was once well into the MENSA level is now pretending to need special ed.
19. Try to write a sentence, now read it back and realize that it is worse than any sentence you wrote in third grade.
20. Sit on those bags of potatoes on a really hard chair. An hour or two would be good.
21. Give up driving and all sense of freedom. About the only place you go now is the doctor’s office or the hospital.
22. Have your family cancel everything they planned to do in the next year. No cruises, anniversary trips, weddings to attend, their own hobbies, interests, concerns. Everything will take a back seat to this disease.
23. Empty your bank account. Know that it won’t be filled soon.
24. Empty your family’s bank account. Or at least accept the possibility of that happening.
25. Empty your closet of anything fashionable, trendy, beautiful or attractive.
26. Spend all day in the lightest nightgown you can find. Anything else hurts.
27. Are the bags heavy yet?
28. Now, go out in public and watch people stare at you. Teenagers will snicker. Sales clerks avoid you. Know that you are likely unable to find anything that won’t hurt.
29. In the midst of all of this, do the research on your own disease.
30. With that research, start a charity.
31. Contact the premiere researchers in the field. Develop a correspondence with them.
32. Take large doses of painkillers. They might help you sleep, but won’t completely remove the pain.
33. Now, add pins and needles to your skin.
34. Bruise everytime you hit something. Bruises can appear just from sitting.
35. Flush your immune system down the drain. If you get near people, you’ll catch whatever they have.
36. Try to sleep with all that weight and the pain.
37. Hear rude comments, have people say it is ‘your fault’.
38. Get poked, scanned, x-rayed, cut on, biopsed, abused and scared out of your wits. Really scared!
39. Sit down and think about the prospect of 8 painful, scarring surgeries in one year. Repeat multiple times throughout your life.
40. Go to doctors and be reminded that there is no cure. Any liposuction done will have to be repeated. And the extra skin (because Dercum’s patients have those potatos UNDER the skin) will still be there. Very attractive, don’t you think.
41. Don’t even think about working.
42. Just try to do your daily routine.
43. Whenever you sit down, attach water balloons to your legs. That will help simulate the swelling. Of course, remember that the swelling is under the skin in a real patient. That means it feels BAD!
Repeat this process daily for a month. Then, decide what you would do to attempt to keep your sanity. Come back and report.
Until you have the guts to do this, please keep your cruel comments to yourself.
Just remember that I love you and am so proud of all that you have accomplished in spite of, and in many instances because of, the challenges you’ve faced. You are my hero, and there won’t be a thing missed this year that wasn’t worth sacrificing for your eventual cure. You will no doubt accomplish many more things in the not too distant future!
Caring Soul, I have a better idea.
Ellen, try this instead. It’s much more efficient.
1. Find a nice, high cliff. 200 feet should do the trick.
2. Jump off of it.
Thanks. 🙂