I can honestly say I always have this sense of “unfinished”. Like I’m supposed to be doing something, something else. I try to head down a road that I think I’m supposed to and it seems as if someone or something always turns me around. So I’ve started dabbling in some things I’m interested in, and have been getting responses from people that I never expected. So we’ll see. But it just seems that the anxiety, the feeling of unrest, maybe it will go away? What am I doing, you ask? I’ve started making organic products (lotion, scrubs, etc). It wasn’t intentional-it was out of necessity. I was tired of how dry my skin was due to my meds, so I did much research, and investigating. So I said, why not? So I made my own, but have also given them to friends. But unexpectedly, everyone keeps telling me how they love what I made. It just feels nice to have create something that people like.Kind of like art. Being able to share what I can do with others.
This gallery contains 3 photos.
This is José who was rescued from an abusive situation. He never fails to make me smile! Thanks, José! We can all use some cute in our day!
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.
I had to contact the author of this post to get her permission to repost a portion of it. She has so perfectly summed up what it is like to live with MS. Thank you Angela (from Nova Scotia). She has a great blog that you should all read:
Gracie’s Mum: A Story of a Mum with MS
Living with MS is much like hurricane season.
All year long.
Nobody knows why some people develop MS while others don’t. Nobody knows why some people have mild cases of relapse-remitting that remain in remission for years.
Nobody knows why some people have faster cycling forms of relapse-remitting. Nobody knows why some with relapse-remitting graduate to Secondary Progressive and others don’t. And nobody knows why some people develop Primary progressive right off the bat.
And nobody has the cure.
And even more importantly, those with any form of MS have no idea when or where the next attack will come and what damage will be left in its wake.
Much like hurricane season, many will be ready and prepared only to be relieved from time to time when not much of anything has happened at all.
Many will face a wrath of nature that no amount of planning could have ever prepared them for.
So what do people who live in the path of hurricanes do?
They live, they breathe, they hunker down for the long haul, they rebuild if necessary only to do it all again.
But very few move away out of fear.
They adapt or die.
So, while I start making longer grocery lists that include canned goods, bottles of water, batteries and candles I am confident in the fact that I too am as prepared as I will let myself be for the next one, which has every chance of being the big one.
And when and if it comes I have but one thing to say.
You better bring it ‘cause you’ve met your match this time.
Yesterday was “the bad day”. I had a horrible day, running around, work, etc. Finally, I lost it. The tears, the weeping, the sobbing. I am entitled to one losing-it per attack and yesterday was it. So today, was for me.
I started with getting my nails done. I never do that. I never pamper myself. There is never time! So today, I did. Then I met a good friend for lunch. It was nice to catch up and hear what he’s been up to.
Then I treated myself and him to cupcakes at Dolce Cupcakery. 3 for me, 1 for him. Maybe I’ll share with the family, maybe I won’t.
I also stopped into a new yarn store. For those of you who knit, you understand the nirvana that this can be. 3 skeins later I left, already planning who was getting what for Christmas.
As simple as these pleasures sound, it made for a good day. Yesterday is still knocking around in my head, but today is starting to fill up the space.
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!
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.
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!)
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?
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.