Onward and Upward

As you know, I have had a pretty craptastic year. (See previous posts) So I am ready for something new! Something exciting! Something fantastic! How can I be so happy? So upbeat? Frankly, I don’t f-in know.

Someone asked me that not too long ago, “How come you are so happy? You have had the year from hell, more than most people have in a lifetime and now you’ve been dealing with your back for 6 months (2 herniated discs, one bulging), how can you maintain this outlook?”

I answered her with this, “I don’t fu@king know. I just keep plodding along, doing what my heart tells me. I guess it’s not in me to sit around and mope. I just am not that type of person. I believe we have choices: we can choose to give up or we can choose to go on. There was just something on TV where some guy said it was proven that a positive outlook cannot help or change things. I think he’s full of shit. A positive outlook might not cure my MS, or my back, but it was as sure as shit keep me from playing in traffic. If I can’t push myself to keep going, what have I got? I find things to do that don’t involve hurting my back. I can’t ride, but I go and groom my horse, or I paint, do yoga, knit . . . until I am back on track, I have to find other things that i enjoy. And I think that’s the secret: don’t sit around, pissed at what you can’t do. Enjoy what you can. So that’s my secret!”

Then we poured more wine and had a laugh at ourselves, and at life.What we have is a gift: good friends, family, and the future.

The next phase

So finished the 3 days of steroids. To put it in perspective – when your Dr. puts you on prednisone for an infection, you usually take 20 mg. I am getting 3 days of IV steroids, at 1000mg each. So think about how awful that 20 mg makes you feel and multiply it 50 times! I did sleep a little bit last night though.

But a new symptom! Gotta love it – vibrating and numbness in my stomach and legs. It’s a lot of fun trying to walk like this. And of course, the world doesn’t stop and I have work and things to do, so I continue on my way. But going to bed early tonight, that’s for sure.

The high point of my day was teaching a lesson this morning to the nicest girl. It was great to get my horse fix, even if it was thru someone else!

Another sleepless night

Someone said to me recently that they can’t believe i have MS. With all that I do (real estate, work with my husband, graphic design, teach horseback riding, paint, etc) it was a shock to know I had this disease. I guess I don’t really think about it. If you choose to be defined by what you have instead of who you are, I guess I can see that. I don’t go about my day and say “Gee, I shouldn’t do that because I have MS.” I go about my day and if I notice I am tired or not feeling quite up to it, then I might say “today isn’t a good day for me.” I don’t want to be defined by a disease. I want to be defined by the person I am. Make sense?

But to discuss this damn disease, I woke up, again, at 3AM. Can’t they find a drug that doesn’t make you have insomnia? Solumedrol is not the one, I can tell you that. So I am working on 3 nights of hardly any sleep with one more to come. (The first night was due to the steroids I had injected in my back, the other 2 nights were from the dreaded Solumedrol). So I get up, work, clean, enjoy the quiet. But I’d much rather be sleeping.

The side effects are the worst part. They are worse than the MS flare-up. Insomnia, insatiable hunger, moodiness, anxiousness, the list goes on and on. In the info from the company, they even mention the possibility of ‘frank psychotic manifestations’. Whatever that might be, I’m sure I’ve had one or two.

 

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 about.com:
“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.” (http://ms.about.com/od/signssymptoms/a/numbness.htm)
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.

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:
http://msblogcentral.blogspot.com/

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!