The future of health care?


Today the visiting nurse came to do day 2 of my IV (love having her come to the house). We got talking about the state of health care and how quickly it is growing. She was telling me how her organization, Lifetime Care, is taking over a lot of smaller organizations from the outlying areas. The problem is they now need more nurses and there is no money in the budget for it. And since there are so many people on Medicaid, they basically get free health care.

I know what we pay and due to the meds I have to have and the number of doctor’s appointments I have, we pay a very high premium. How many people stop to think about those who are taking care of us? She told me what she makes a year and it made me sad. She makes a fraction of what she should and she has been a nurse for many years. I look at some of the jobs out there that are run by unions and the government and people are making way more than they should and driving our country farther down the tubes than it already is. I just had to share this because it made me sick.


Yoga and its benefits

I mentioned in my earlier post about gentle yoga. I can’t tell you how much this has been helping my very painful back. But after doing research, I learned that I really needed a teacher who understand anatomy and how the body works. Rick Lynch at Finger Lakes Yoga is that teacher. He understands exactly what I’m going through, how I got there and how to help it. There are many yoga instructors who might understand the art of the practice, but don’t know our bodies and how they are put together. So do your homework and even go and watch a class. I can’t say enough about how important it is – the last thing I wanted to do was create more problems and this class has been stretching and working those muscles that have been needing help.

Oh, and this book is awesome too! It’s not all yoga but great stretches – many of which I was doing in Physical Therapy.

The worst year EVER!!!

I am so ready for 2012. To sum up this year. It started with a suspected appendicitis attack which turned out to be a health problem returning in my intestines that I have already had operated on. To continue, I then took a spill off my horse and suffered a concussion that lasted 2 months. So when I could finally ride again in March, I tore my rotator cuff. Then, when I could ride again in May, I threw out my back. Then when I thought I finally was over it all, I herniated 2 discs in my back, have another bulging and spent the whole summer basically standing. And interspersed in it all, my MS flared up 2x. So I think I can pretty much say this year has sucked and in a big way. I can count on one hand the number of times I have ridden. It is depressing to watch my friends all ride and show. I have had to cancel numerous events and plans throughout the summer.

But finally, some relief. Back injections are helping. Getting back to yoga (very gently yoga) and starting back on an exercise routine are all steps in the right direction. It may be a while before I get on a horse again. but I will. To be able to ride again will be great. But I wonder how long I can wait until I jump again? (thank goodness my doctor doesn’t read this!)

And it continues

So much has happened in the last few weeks. As I told, my neuro of 17 years had to ‘surrender’ all of his MS patients that he had on Tysabri. He had a huge infusion center and from what I understand, he had over 300 patients with MS. And most of them he had on Tysabri. Don’t get me wrong, I loved my neurologist. He diagnosed me. He was even invited to my wedding! But I honestly think things got away from him.

So I began my mad search for a new neuro. As he didn’t really have too many suggestions, I began calling people I knew. Luckily, my husband had built the home of the CEO of Unity Health. He suggested a doctor who I called and set up an appointment. I already had 2 other appointments with 2 other doctors. The doctor who was suggested was able to take me first due to a cancelation, so I saw her, bringing my husband and son in tow.

Wow. All I can say is Wow. She was so thorough. My old doctor had gotten so big that there really wasn’t a lot of time he could spend with patients. So I would go there, wait 5+ hours for an appointment and see him for 5 minutes, if I was lucky. Or I might just see a PA. I guess I never thought about how I wasn’t really being seen as a person anymore, just one more in the list of patients they needed to fit in in a day.

My new doctor was such a different experience. I only waited 5 minutes in the waiting room, and then went right to the exam room. They asked if it was OK if a resident came in first. I said that was OK and the nicest man came in and asked me some questions of my MS history. Shortly thereafter, my new doctor came in. She was amazing. She asked tons of questions. I was a little incensed that after seeing my previous doctor for 17 years, they had sent only 1 1/2 pages of a summary of my medical history. Thousands of pages condensed to 1 1/2 pages? How can that be? So my new doctor asked every question you could imagine. I felt like someone was listening. Don’t get me wrong: i am not bashing my previous doc. He has an aggressive philosophy when it comes to MS and for someone like me, that was necessary. She and I both agreed that it was time for me to change meds. Get me off the Tysabri for a few reasons: I had been on it over 5 years. I had tested positive for the JC Virus, and my titers were elevated. Seeing that the longer you are on it, the more apt you are to contract PML – a fatal brain illness, and I was testing positive for all of the indicators for it, it was time to get off it. I guess I was a little upset that my previous doc had not pursued that. So now I am onto the bad part – I have to go back on Copaxone, a shot everyday. I did it for 7 years, and honestly I’m not sure if I can mentally do this.

So what had stressed me out horribly, when he told me I needed to find a new doc, turned out to be a blessing in disguise. I really felt I connected with my new doc and the bonus is anytime I need any infusions, they will come to my house to do it! No more traveling to the doc’s office for it! Woo hoo!!!

But now I am dealing with a new symptom: a tingling sensation shooting down my left leg. It almost feels like electric currents throbbing down my leg. I have looked it up and have found this on
“Numbness and tingling are two of the most common symptoms of multiple sclerosis. Pretty much all of us with multiple sclerosis (MS) have experienced paresthesia, the special form of numbness and tingling that accompanies MS.” (
So basically I’m supposed to just deal with it I guess. But all of a sudden I am having a panic attack that this is how it’s going to be forever. Doesn’t mean I have to like it. Doesn’t mean I have to take it. I guess the worst part of having MS is the uncertainty. Am I having another attack? Am I going to have this symptom forever?

The end of an era

Today was my last appointment with my long-time doctor who treats my MS. 17 years of appointments, tears, hopes, all gone in a single appointment – it was a 4+ hour appointment, but still. I left on a bittersweet note – went over results of MRI scans, saw some progress, some plaques that didn’t change, so I guess good and bad. But I’m on to a new doctor with more questions and unknowns than I have ever had.

I guess maybe this is a good lesson for all of us. Is it good to become so dependent on one doctor? Is it better to maybe see 2? And of course, what impact does the insurance have on all of that? Our hands are usually tied when it comes to our medical choices.

I have appointments with 3 new doctors in May. I’m going to take my time and test the waters. Hopefully I’ll like one of them . . . I would be curious to know what people have gone thru in the search for finding a specialist. It’s not quite as easy as it seems. I have asked around, looked online, sent out feelers . . . but I am learning it is subjective to peoples’ opinions, and many seem to accept just what they are told. I guess I have been dealing with this illness for so long that I am done just listening. Now is the time to be proactive and more involved in my treatment.

Do doctors become complacent after they have been treating the same disease for decades? Or seeing the same patient for years? I’m not saying that I’ve experienced this, but it is something to consider.

And so it continues . . .

So I now have 3 appointments with Neurologists. It is so surreal – I feel like I need to shop around, like for a car. This is someone who holds my future in their hands. Yes, I try to be proactive. Yes, I try to be informed, but a doctor is who we look to to give us advice, prognosis, all of that stuff. I want someone to tell it to me on the straight and narrow, no sugar-coat, no babble. Just tell me what to expect and let me forge ahead. I guess it wouldn’t bother me so much if I wasn’t in the middle of having an attack – it feels like I am under the gun to find someone right now. But I guess that’s good . . . I call around to suggested doctors, and I am getting tired of the same “you can see the PA”. No offense, but for my first appt, I really want to see the Dr! I have heard this at least 3 times already.

It is frustrating because my doc, as he is telling me to find someone new, is also telling me I am now in the ‘danger zone’ for the meds I take and might want to consider switching. What??? This drug (tysabri) has been my lifesaver. I truly believe without it, I wouldn’t be functioning as well as I do now. So let’s just throw that into the mix.

But enough of my bitching. I looked around me at the waiting room the other day and saw all of these people, waiting for news, help, comfort. And now they’ll have to look somewhere else. I have seen him for 17 years. Close to 1/2 my life (give or take a few years).

And the world shifts

I went to my Dr on Tues with what I am thinking is a flare up of my MS. But before we can even get into talking about symptoms, etc., my doctor of 17 years, someone who I think of as a dear friend tells me he is probably going to be closing the office down. He gave me a few reasons: he has a large infusion center (4th largest in country) and possibly all of this patients he has on Tysabri (and other infusables) maybe created a red-flag with the insurance cos. The insurance companies are definitely playing God with all of us. Now, I don’t know the whole story, but I do know that Dr. Smith did right by his patients and he lived for his work. His aggressive approach toward my treatment was a life saver. I honestly believe I would not be walking, riding, playing with my son if it weren’t for his unwavering belief that there was something that could help.

So now I, and hundreds of others are in a mad dash to find a new neurologist. I am sad to see the end of this journey but I need to look on the bright side and realize I’m heading down a new path with a new sherpa. Maybe a new opinion or thought will benefit me as well.

So I sit here, pounding this out @ 4Am (the battle of the steroids and the sleeping pill ended about 3:30) Steriods: 1 Pill: 0

but this added stress on top of the attack I’m having isn’t helping. If anyone has any input on a good neuro, send it my way.

Domestic Goddess? Hardly

I officially crossed over to the dark side (shudder). I did something I never thought I’d do. I am even a little bit ashamed. I swore, up and down that I would never resort to something such as this.

I ironed the pillowcases.

I know, it’s disgusting. Me, a self-proclaimed “nothing like Martha Stewart” turned on the iron, waited for it to heat and pressed it against the pillowcases full of wrinkles. In my defense, I did let them sit in the laundry basket, waiting to be folded for about 4 days. So I can hold onto a little of my self-esteem.

Don’t get me wrong-I like to bake and do some things around the house. But I’m not one to obsess about it. I dust when I see the dust. I clean when I see something needs cleaning. I keep my kitchen neat. I scrub the toilets. But I don’t fret about it. I am not one who says, “Every Wednesday I clean the bathrooms, and every Thursday I clean the floors and every Saturday I do the shopping, not at just one store, but maybe 2 or 3, depending on what I need.” What? (And yes, I know someone like this) I remember having a conversation with the person referenced here and she made a comment, “The most important things to me are cooking and keeping my house clean.” I came back with, “The most important things to me are my family.” I would much rather spend my time playing a board game or going outside with my son, riding my horse, reading or knitting (yes, that is my one domestic-related vice). I like to see a well-rounded life, not one that makes me a slave to the laundry or the floors or my countertops.

I would never have thought I’d see the day I’d iron a pillowcase. My husband was thrilled as that is what his mother did when he was growing up. He was the kid with the creases in his jeans. His mother even ironed his underwear. I told him I stopped at pillowcases. We’ve been married for 12 years and this is the first time I ever laid iron to case. It will be a long time before it happens again. So I proudly will proclaim myself the opposite of Domestic Goddess. Hmmm . . . what is the opposite of a Goddess? A Troll? That’ll work. I’m a Domestic Troll and proud of it. (I looked for a good image of my Troll, but I couldn’t decide. I included two. I can choose depending on my mood. I’m leaning a little toward the Warrior Troll. I think that suits me a little better.)

Warrior Troll

Maybe her?

Back to the blog

It’s been a while since I’ve posted anything about me, personally–about MS, about what life is like. I got so wrapped up in the lawsuit from our elected official (see previous posts) that I guess I was able to put the rest on the back burner. And maybe because I haven’t been noticing it as much lately. But that’s probably because I’ve had a concussion that has occupied my time! But I’m noticing a few nagging sensations and was surfing around and came upon this great list of MS bloggers:

The woman who created that blog (Brass and Ivory)  has always been great about keeping all of the MS bloggers in touch and connected. If you know of anyone, this is a great resource. We are not alone!

The Voice of Thousands – we’ve got the power

In the aftermath of the Jim Alesi debacle (for those of you who haven’t heard, due to the pressure, he dropped the lawsuit), I’ve had time to talk to many of our supporters. First and foremost, we all want to say a very heart-felt THANK YOU to everyone who contacted us to tell us we had their support and to tell us the outrage this whole debacle caused. It was incredible – the number of emails, text messages, phone calls we received – from people we knew and from many we didn’t know. And I came to realize the power that we have if we all speak together. The whisper of one person quickly becomes a deafening roar when there are thousands. Tens of thousands. We had emails from all over the country and even the world. We received one from Australia! Apparently injustice isn’t just a regional issue!

The media was critical in this colossal mess. The blogs, the articles in papers, the websites, the radio . . . the list is endless. The reporters and radio hosts were so important in delivering the message. The term “viral” was used regarding the maelstrom of emails and comments. I will admit, it was amazing to be a part of the media storm, in fact to be in the center of it. I had no idea what a tidal wave it would create. Maybe I should say tsunami! From one blog post that I put on here shortly after we learned about the lawsuit to a post on FaceBook  to the thousands of websites that quickly became devoted followers of the case. (We had over 5000 hits on our website the first day).

I saw first-hand that the whisper of only one person quickly becomes a deafening roar when it is thousands of us. Tens of thousands. Through our words, by making that deafening roar, we stood up to the powers-that-be and we made a difference. And if feels amazing.

Rachel Barnhard at 13WHAM wrote a great article:

Did Social Media Play Role in Alesi Outrage?