In September '07, I was diagnosed with Multiple Sclerosis. In an effort to maintain my sense of humor while integrating this new reality into my life, I started this blog, which has become my public journal, an opinion column, and a rough draft for my book. MS prompted this project but it's also about life in general. My life, that is.
It's the morning after publishing this post and I just learned of the passing of Senator Ted Kennedy. Because of his commitment to health care for all, I think it's more important than ever that we pass the best health insurance reform we can.
~ This one goes under the heading of WTF.
Because of the rising costs of premiums, my employer has decided to switch health insurance carriers. Because I live in Massachusetts where insurance companies aren't allowed to discriminate based on pre-existing conditions, I wasn't worried about my MS treatment being covered.
But this is insurance we're talking about.
To help us with the transition, we had an information session with HR and representatives from the new insurance company. Just before the meeting, I learned that my boss was a little pissed off that he would still have to pay a $150 co-pay for an MRI. "Still?" I inquired since I've had several MRIs since I began working there and I haven't paid anything for a co-pay. We both assumed it was because his MRI was ordered after an injury and mine were used to determine my course of treatment for MS.
During the question and answer period of the information session, I raised my hand and asked the insurance rep if they waived the MRO co-pay for people with a diagnosed neurological condition...say...Multiple Sclerosis?
The rep told me she would check and let the HR department know the answer.
Well, today I got the answer and here it is, directly cut and pasted from an email from the insurance company:
Q - Would we exclude the MRI HTI copayment for members with a multiple sclerosis diagnosis? The only exception listed is for members with a current cancer diagnosis. Each and every claim must be billed with the cancer diagnosis in order for the HTI copay to be waived. The copayment would apply in all other circumstances.
The good news is that my boss is taking this to a higher level--more evidence that I work for a compassionate organization and not an evil insurance company.
This recent event made the following video and the ongoing health insurance reform debate even more relevant to me as a person with MS. I sincerely hope that Congress has the good sense to keep the public health insurance option.
Several of my fellow MS bloggers have already noted this important news about Canadian researchers finding a treatment called GIFT 15 that has successfully reversed MS in mice. Thanks, everyone who I've already forgotten about because I'm on my first day post Solumedrol infusion and I'm a little sleep deprived. You know who you are and you rock as news breakers. With this one, I'm going to play like Fox News. I am taking the news item, plagiarizing your work, twisting it with sensational graphics so I can not feel so bad about being scooped. :-)
Here are all the links I could find to articles about this research. I won't try to restate what has been reported by professionals who, hopefully, do all the fact checking I have no time or concentration abilities to do right now:
If you have MS or love someone who does, I urge you to pay attention to what's going on with National Health Insurance Reform. This issue affects all Americans, but for those those of us who live with chronic, potentially progressive diseases, it could mean the difference between getting and keeping health insurance so we can receive the proper treatment and having to choose between paying for the meds that keep us well and silly little things like rent, food, and utilities.
Regular readers know that I make no secret of my support of President Barack Obama--before and after the election. On this topic, though, I have to tell you that I wish he, his advisers, and Congress could do more.The name alone, Health Insurance Reform, is quite quite a step down from Health CARE Reform. Health CARE includes more than just insurance. Health CARE should include alternative medicine, palliative care, health education, pharmaceutical funding and drug pricing, embryonic and adult stem cell and other research funding, and much much more.
But I digress.
I'm not 100% thrilled with the plan or happy about what it's left out, but I'm afraid if we hold out for something perfect, we will--once again--miss out on the opportunity to make real change in people's lives. Sometimes change has to happen incrementally. I believe the current plan is a good start and, rather than reinvent the wheel, I will use the words from and email I received from David Axelrod, Senior Adviser to the President. I know some people in pretty high places, huh? Me and the other 500,000 people on the distribution list.
8 ways reform provides security and stability to those with or without coverage
Ends Discrimination for Pre-Existing Conditions: Insurance companies will be prohibited from refusing you coverage because of your medical history.
Ends Exorbitant Out-of-Pocket Expenses, Deductibles or Co-Pays: Insurance companies will have to abide by yearly caps on how much they can charge for out-of-pocket expenses.
Ends Cost-Sharing for Preventive Care: Insurance companies must fully cover, without charge, regular checkups and tests that help you prevent illness, such as mammograms or eye and foot exams for diabetics.
Ends Dropping of Coverage for Seriously Ill: Insurance companies will be prohibited from dropping or watering down insurance coverage for those who become seriously ill.
Ends Gender Discrimination: Insurance companies will be prohibited from charging you more because of your gender.
Ends Annual or Lifetime Caps on Coverage: Insurance companies will be prevented from placing annual or lifetime caps on the coverage you receive.
Extends Coverage for Young Adults: Children would continue to be eligible for family coverage through the age of 26.
Guarantees Insurance Renewal: Insurance companies will be required to renew any policy as long as the policyholder pays their premium in full. Insurance companies won't be allowed to refuse renewal because someone became sick.
Reform will stop "rationing" - not increase it: It's a myth that reform will mean a "government takeover" of health care or lead to "rationing." To the contrary, reform will forbid many forms of rationing that are currently being used by insurance companies.
We can't afford reform: It's the status quo we can't afford. It's a myth that reform will bust the budget. To the contrary, the President has identified ways to pay for the vast majority of the up-front costs by cutting waste, fraud, and abuse within existing government health programs; ending big subsidies to insurance companies; and increasing efficiency with such steps as coordinating care and streamlining paperwork. In the long term, reform can help bring down costs that will otherwise lead to a fiscal crisis.
Reform would encourage "euthanasia": It does not. It's a malicious myth that reform would encourage or even require euthanasia for seniors. For seniors who want to consult with their family and physicians about end-of life decisions, reform will help to cover these voluntary, private consultations for those who want help with these personal and difficult family decisions.
Vets' health care is safe and sound: It's a myth that health insurance reform will affect veterans' access to the care they get now. To the contrary, the President's budget significantly expands coverage under the VA, extending care to 500,000 more veterans who were previously excluded. The VA Healthcare system will continue to be available for all eligible veterans.
Reform will benefit small business - not burden it: It's a myth that health insurance reform will hurt small businesses. To the contrary, reform will ease the burdens on small businesses, provide tax credits to help them pay for employee coverage and help level the playing field with big firms who pay much less to cover their employees on average.
Your Medicare is safe, and stronger with reform: It's myth that Health Insurance Reform would be financed by cutting Medicare benefits. To the contrary, reform will improve the long-term financial health of Medicare, ensure better coordination, eliminate waste and unnecessary subsidies to insurance companies, and help to close the Medicare "doughnut" hole to make prescription drugs more affordable for seniors.
You can keep your own insurance: It's myth that reform will force you out of your current insurance plan or force you to change doctors. To the contrary, reform will expand your choices, not eliminate them.
No, government will not do anything with your bank account: It is an absurd myth that government will be in charge of your bank accounts. Health insurance reform will simplify administration, making it easier and more convenient for you to pay bills in a method that you choose. Just like paying a phone bill or a utility bill, you can pay by traditional check, or by a direct electronic payment. And forms will be standardized so they will be easier to understand. The choice is up to you - and the same rules of privacy will apply as they do for all other electronic payments that people make.
Coverage Denied to Millions: A recent national survey estimated that 12.6 million non-elderly adults - 36 percent of those who tried to purchase health insurance directly from an insurance company in the individual insurance market - were in fact discriminated against because of a pre-existing condition in the previous three years or dropped from coverage when they became seriously ill. Learn more: http://www.healthreform.gov/reports/denied_coverage/index.html
Less Care for More Costs: With each passing year, Americans are paying more for health care coverage. Employer-sponsored health insurance premiums have nearly doubled since 2000, a rate three times faster than wages. In 2008, the average premium for a family plan purchased through an employer was $12,680, nearly the annual earnings of a full-time minimum wage job. Americans pay more than ever for health insurance, but get less coverage. Learn more: http://www.healthreform.gov/reports/hiddencosts/index.html
Roadblocks to Care for Women: Women's reproductive health requires more regular contact with health care providers, including yearly pap smears, mammograms, and obstetric care. Women are also more likely to report fair or poor health than men (9.5% versus 9.0%). While rates of chronic conditions such as diabetes and high blood pressure are similar to men, women are twice as likely to suffer from headaches and are more likely to experience joint, back or neck pain. These chronic conditions often require regular and frequent treatment and follow-up care. Learn more: http://www.healthreform.gov/reports/women/index.html
Hard Times in the Heartland: Throughout rural America, there are nearly 50 million people who face challenges in accessing health care. The past several decades have consistently shown higher rates of poverty, mortality, uninsurance, and limited access to a primary health care provider in rural areas. With the recent economic downturn, there is potential for an increase in many of the health disparities and access concerns that are already elevated in rural communities. Learn more: http://www.healthreform.gov/reports/hardtimes
Small Businesses Struggle to Provide Health Coverage: Nearly one-third of the uninsured - 13 million people - are employees of firms with less than 100 workers. From 2000 to 2007, the proportion of non-elderly Americans covered by employer-based health insurance fell from 66% to 61%. Much of this decline stems from small business. The percentage of small businesses offering coverage dropped from 68% to 59%, while large firms held stable at 99%. About a third of such workers in firms with fewer than 50 employees obtain insurance through a spouse. Learn more: http://www.healthreform.gov/reports/helpbottomline
The Tragedies are Personal: Half of all personal bankruptcies are at least partly the result of medical expenses. The typical elderly couple may have to save nearly $300,000 to pay for health costs not covered by Medicare alone. Learn more: http://www.healthreform.gov/reports/inaction
Diminishing Access to Care: From 2000 to 2007, the proportion of non-elderly Americans covered by employer-based health insurance fell from 66% to 61%. An estimated 87 million people - one in every three Americans under the age of 65 - were uninsured at some point in 2007 and 2008. More than 80% of the uninsured are in working families. Learn more: http://www.healthreform.gov/reports/inaction/diminishing/index.html
The Trends are Troubling: Without reform, health care costs will continue to skyrocket unabated, putting unbearable strain on families, businesses, and state and federal government budgets. Perhaps the most visible sign of the need for health care reform is the 46 million Americans currently without health insurance - projections suggest that this number will rise to about 72 million in 2040 in the absence of reform. Learn more: http://www.WhiteHouse.gov/assets/documents/CEA_Health_Care_Report.pdf
Visit WhiteHouse.gov to see video responses to the incredibly vicious and insidious attacks on this important legislation. And, if you don't know how to reach your elected officials, click here and let them know how very important it is to pass Health Insurance Reform now. It really is that important.
Naaaaa. This is not a post about menstruation, although I'm chuckling at the looks of horror on the faces of the few men who read my blog.
Today was my monthly visit to the Partners MS Center's Infusion Clinic for my Solumedrol infusion. I both like and dislike these visits. Here's why.
Likes:
I get a burst of energy after the Solumedrol infusion and don't feel like I'm an active heroin addict nodding at my computer. I tend to do a lot of writing at these times and catch up on my On Demand TV viewing.
I get to listen to all the interesting conversions of the 10 or so other MS patients and their friends, family, and the nursing staff at the Infusion Clinic
They have free coffee and wireless at the Infusion Clinic.
Dislikes:
Other patients choose to watch TV rather than read, talk, or surf online and they sometimes have their TVs on way too loud tuned in to really, really, stupid daytime television shows.
I sometimes have to listen to loud, stupid conversations like the woman who sat next to me this morning who kept spelling her name (T-E-R-R-I) for the older, apparently deaf woman in the next recliner.
I usually see at least a few people who have advanced MS and are a lot more disabled than I am and I worry about the future. Today, I saw a 20something woman helping her mother with her walker tothe bathroom. I really doubt Ruby or I would enjoy that experience.
Good and bad, the infusions seem to be keeping a serious relapse at bay and for that I am grateful.
I arranged for Vehicle Donations to pick up my car today. They promised to come before Wednesday. It's been sitting idle and unregistered in the driveway since I stopped driving in November and my landlord asked me about it today. So...it's time. But, it's also sad. Very, very sad.
In addition to acknowledging that my MS-related optic neuritis has taken away my ability to drive, donating my car also means accepting the fact that I am no longer a Volvo-driving soccer mom. And I can't even give you an embedded version of the Everclear video either. It is not a good day.
I will now play the Pollyanna Glad Game and focus on the positive:
I got my bike buddy this weekend so Zane will be able to ride behind me (on very safe streets and wide bike paths) which means the kids and I can go on longer trips that don't increase our carbon footprint.
Without the car in the way, Ruby and Zane will be able to sled down the length of the driveway when it snows this winter.
By donating my car, I'm contributing money to WBUR, my local NPR station, and will get a tax write-off for 2009.
I am fully embracing the car-less lifestyle and have even decided to protest the proposed public transportation rate hike on my other blog.
Farewell, my beloved Volvo. You will be missed.
(8/11/09 Update: They towed it away today and I cried...after sneaking this picture so the tow truck driver wouldn't think I was a complete dork. It's another loss--not just of the hunk of metal but of the independence that driving brought me. Although it also brought me a lot of stress once my vision started to deteriorate--see the dent on the front left quarter panel? I know I need to stay in the day but I can't help but wonder if this is the last car I will ever own.)
Ok. I once had numb feet for a couple of weeks. I believe it was after my dad died so I assumed it was an MS symptom brought on by stress. I'm not feeling any more stressed out than usual now but I seem to have itchy feet. Not to be gross or anything, but there is no rash or fungus or anything surface going on. It feels like a subcutaneous precursor to the numb feet which kind of sucks.
I've been chosen to be one of the paid MS video bloggers for this new pharma company website that will not require me to pimp myself for any particular drug. It's kind of exciting. Just waiting for the contract and then a camera crew will show up at my house to get me set up and shoot the first few blog posts. I hope the itchy feet will not be too distracting to them or to me. I once had a boss that picked her toes during meetings in her office. It was really rather gross. I wonder if I can find a way to surreptitiously scratch my feet during the video shoot. A sisal rug maybe?
MS occurs more commonly among people with northern European ancestry, but people of African, Asian, and Hispanic backgrounds are not immune.
Most people with MS are diagnosed between the ages of 20 and 50.
Two-three times as many women as men have MS.
MS is Lazy!
I just read this on an MS support group site and it made me feel better about feeling "lazy."
When the myelin covering on the nerves is lost/disappears/whatever it does, the nerves don't conduct brain messages nearly as effectively. It's kind of like the nerves have to find new pathways for the messages from the brain. So the messages are much slower in reaching their destination and it takes more energy, trying to find the right paths. This made a lot of sense to me and helped my not feel so 'lazy'.
I would love to give the proper attribution for this story but I have no idea where I found it! I think it may have been posted to an MS community site.
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about MS. She came to doctors with me and she saw me walk with a cane. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.
I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have MS”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.
So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with, which you wont know until you wake up. To answer your question we’ll start your day with twelve. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out the12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon.
I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If my shoulders and back hurt I wont be able to put on a bra. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons.
I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a virus comes, or a treatment reaction, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so dizzy, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it.
I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared” It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.
I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons."
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say that she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
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