The question I’ve been asked more frequently in recent weeks is whether I’ve heard from the hospital. This, while showing concern and interest, is beginning to feel like a burden for me. Continue reading
We all have experienced, at least once in our lives, that moment when we wished we could go back. But we know we can’t – it’s impossible – so we grow out of that feeling, reason we weren’t as wise back then, search for the details that tell us things weren’t even that good, all in order to quiet that longing. We say, “My life is actually better now, you know, despite.” But with chronic illness? I’m not sure the process goes like this. Continue reading
I mentioned in my previous post that I wouldn’t be reading non-fiction for a while. However, since I’m in between drugs at the moment and this book came out a little over a month ago, I thought the timing was perfect.
I haven’t been taking anything for MS since February, and right now what I’m going to take next remains a huge question mark. I started on Avonex when I was diagnosed but soon it became clear that interferons are a big no for me due to side effects. I moved to Copaxone but disease progression as seen on MRI made doctors consider other possibilities. Continue reading
Last Saturday, as I mentioned on my last post, I had to sleep 11 hours out of complete exhaustion. I thought Sunday I would feel refreshed and ready to continue to fight my battles but I ended up sleeping 12 hours. I only left my apartment last weekend to have dinner at my mom’s on Sunday. She said my eyes looked really sleepy but I was in a good mood and the dinner went well. Monday morning I didn’t hear the alarm because I was in a such a deep sleep. When I finally got up, I went to the kitchen first and then went to the bathroom. I have a vague memory of a feeling of nausea taking over my body and then the lights went out. I passed out.
This was probably caused by low blood pressure. I usually have low blood pressure and spending most of the weekend in bed probably didn’t help. But what I find funny is that I woke up, and as I didn’t know where I was or what happened, I let myself blackout a second time. This to me became a new definition of exhaustion – when you let yourself lose consciousness because trying to figure out where you are and what happened is such an effort you don’t even try. I was actually quite comfortable with my system shutting down. Losing consciousness is apparently the only way to make sure I don’t worry about anything. It’s the only way my mind actually takes some time off. Because even when I’m sleeping I’m in such distress. Last week one night I dreamed I was being stalked and another night I dreamed I was trying to kill myself. Last night I dreamed I was running because I had witnessed a crime and they were after me. It involved running down endless flights of stairs and finally trying to escape on a motorcycle (never drove one in my entire life). I haven’t been watching movies or TV (no time for that) so I don’t think that could be an influence. But I can’t figure out my subconscious agenda either.
When I woke up the second time I managed to get up. I realized I had bruises on my knees, shoulder and face. I also cut my lip. I think I literally fell on my face. Had it been more serious, I wonder what it could have happened to me. I live by myself, so how long it would have taken for someone to help me if I could not do it myself? Better not even think about it.
Supposedly, my psychiatrist took me off escitalopram and put me on Prozac to help me be more “up”. When I first started reading about MS, I learned that Prozac is one of three drugs sometimes prescribed to help with fatigue. I don’t know what Prozac is doing, but I’m certainly not more “up” and I’m certainly not less tired. I don’t think that was the deal.
Speaking of meds, I finally know what my new MS drug is going to be, after failed attempts with Avonex and Copaxone. It’s still going to take a while before I start, but I will sure keep you posted.
Copaxone and I will part ways soon but at least we get to celebrate our 2 year anniversary together. This was one of the most peaceful relationships I ever had.
I remember meeting the nurse who introduced us. It was a Saturday and she came over after lunch, armed with the auto-injector. Everything I needed to know was really well explained and I got to give myself my first shot on the right arm. Now, you don’t feel the needle or the liquid going in, but after a couple of seconds, when the drug starts spreading under the skin… boy it hurts. It’s like taking one of those nasty vaccines that leave you feeling sore, except you take Copaxone every day. But well, there was an ice pad ready to cool off all that passion Copaxone showed for me and then I went about my business.
I was afraid of having terrible skin reactions as I’d seen pictures on the internet. However, when I got home some hours later and took off my sweater to have a look, apart from a little swelling everything was fine. I remember looking up at my ex-boyfriend and saying “I made it,” like I’d just finished the marathon or something. And this was the beginning of a love affair that celebrates 2 years now.
During these two years I never had side effects worth mentioning, which was a great improvement from the ten months I’d spent before with Avonex. My nurse told me some time later that she never expected things to go so well. I had everything against me: my skin is very white and thin and it bruises easily. Furthermore, I don’t have much fat, and fat is good to absorb Copaxone without leaving lumps. But against all odds, months went by and being with Copaxone every day was never an issue. I got used to the daily injections and even taking it out with me, though I confess I forgot to take it on one or other occasion.
Unfortunately, I’m going to have to leave this happy relationship. Copaxone is just too peaceful and quiet to be able to keep my ms from violating the restraining order. I’m hoping I can finally start a drug that is aggressive to the disease and kind to me. Fingers crossed.
Having struggled with anxiety all my life, in September of 2012 I started suffering from what seemed like mild panic attacks. I had been diagnosed with MS nine months before and found out that Avonex not only wasn’t doing anything to prevent disease progression but it was also messing up my liver and thyroid. Plus, due to bureaucracies I had to wait before being able to move to another drug. My chest had begun to hurt, right where my heart is supposed to be, and when it hurt really bad I had trouble breathing. It even got to the point I wondered if I had heart problems. So I went to see my psychiatrist.
Now, I’m fairly open to taking suggestions and trying new things if that means there’s hope my symptoms will improve. But my psychiatrist just went: “I’m not going to prescribe you anything. You see, what you learn from a disease like MS is that you don’t really control anything in your life, so you shouldn’t worry so much.”
So I just spent 70 euros on “expert” advice that I could have heard from my mom, dad, boyfriend and closest friends… for free? Thanks, doc. What’s next? Telling me to smoke some weed?
I never saw him again. Found myself a new psychiatrist who listens and cares. She prescribed me Escitalopram and my chest never hurt again.
My mother suggested I saw an acupuncturist so off I went. I kept telling him about my fatigue, blurred vision and trouble sleeping but he didn’t seem to listen because all he wanted to treat was my legs, despite the fact that I stressed I had never had mobility issues. But that wasn’t the worst. One day, as I was telling him about my symptoms and some of my fears, he said there were a lot more complicated situations out there, and went on talking about the work he did with children with cancer.
Dear Mr Acupuncturist,
I’m not a total moron and I’m perfectly aware there is a lot of misery and suffering out there, and things that just don’t make sense and are just not fair. But since I hired you to see if there was anything you could do for me, can you at least for these sixty minutes focus on me? Then we can both go on worrying about people who are suffering more than me. I can even buy a “suffering meter” to see who qualifies.
And as if this wasn’t enough, I noticed my mother somehow knew about things I had never told her but had mentioned to him. Have you ever heard of confidentiality, Mr Acupuncturist? Privacy, maybe? Trust? I can’t even…
I went to see another neurologist to hear yet another opinion about all MS drugs available, their risks and benefits. As we were discussing second-line treatments, which heavily suppress many functions of your immune system, he said something as unbelievable as, “You needn’t worry about catching something like, let’s say, AIDS, ’cause you’re not gay.”
Dear universe, did I travel back in time and I’m in the 80s again? Am I speaking to a doctor or a religious fundamentalist? Should this person be practicing medicine? I’m puzzled.
I found out I have endometriosis. My gynecologist said, “We’re gonna need to operate as soon as possible. I’m going to schedule all the pre-op exams.”
I wasn’t happy about undergoing surgery, so I went for a second opinion. Doctor said “I’m not going to operate a 30 year-old who’s never had children and who has another condition like MS without at least trying some medication first.”
Bless you, doctor. Medication is working, my cyst is almost invisible now and my ovaries are still intact. You’ll always be my gynecologist.
I have a new primary care physician. I went to see her, tell her about my conditions and what generally life is like for me. That’s when she says, “A lot of people with MS are able to do pretty much everything in their lives, why can’t you?”
If ignorance were music, you’d be the national orchestra, doc.
The first time I actually felt my survival instinct running in full mode was when I was diagnosed. While I was trying to keep my head above the water, get used to injections and side effects, and manage the overwhelming amount of info about multiple sclerosis I would have to become familiar with, I looked around me and everything seemed superficial, futile and vain. I knew I was being unfair, but people’s worries, problems and troubles irritated me. It all seemed pretty meaningless. I resented the fact that people were carefree enough to look for mindless entertainment. I was focusing all my energies in being well while everyone else was on Facebook talking about the latest random video or trend. Another funny thing that happened was that my creativity was gone for a while. I’m always full of ideas and there are constantly voices in my head playing parts in short stories that I sometimes like to write. Suddenly the voices were quiet. Imagination thrives in empty spaces, and there was no room inside my mind for anything other than MS and being fine.
Although at a much smaller scale, I’m getting hints of that feeling again. Right now I have to decide between a drug that might give me progressive multifocal leukoencephalopathy and another drug that might give me heart problems, knowing that both will shut down key functions of my immune system and thus I won’t be protected against infections and possibly tumors. At the same time people want me to engage in the usual office gossip of who’s backstabbing who, ask me if I’m counting the days until I see my infatuation again (who?) and expect me to remember about a concert or show I wanted to go to? I just feel like screaming.
Meanwhile, my mother has made clear that she isn’t happy about me taking any of those drugs. She didn’t need to tell me though, because two years ago we had the same discussion when I switched from Avonex to Copaxone. My mother has a cure for my multiple sclerosis: if I never leave my house again, only eat what she cooks and spend my time doing yoga, meditation and acupuncture, I won’t need anything else. She just forgets this isn’t very practical – or worth living for, for that matter.
So my survival instinct has been obsessively listing everything I’ve been doing for the past three years – and some of them for longer – to prove that I really can’t do more or better than I am already doing, and that this disease is simply unpredictable, random and not my fault. I have been:
- Eating the best I can. I have a varied Mediterranean diet, that includes a lot of fruits, vegetables, soup, nuts, and fatty fish. I started drinking 2 liters of water a day. Though I didn’t eliminate them completely, I cut down on dairy, gluten and meat, as I found I have more energy if I don’t eat as much. I never had a sweet tooth so I never ate much refined sugar. I don’t have pre cooked meals at home. When I eat out, I look for the best options. Yes, I occasionally have a pizza, but I don’t think it’s one occasion here or there that’s going to kill me.
- Exercising. The past ten years I did cardio fitness, yoga, pilates, contemporary dance and floor barre. This year, as I don’t have much time to enroll in activities due to having classes at night, I go running and I also do stretching exercises at home. They help me keep sane.
- Meditating. Although I don’t meditate as often and as regularly as I would like to, I notice I’ve been able to improve some of my cognitive functions. I’ve also been sleeping and resting better.
- Taking more breaks. This was something I didn’t use to do. I now take breaks during the workday, pick an evening every week to not do anything after work, say no more often and try to manage my vacation time in a more balanced way through the year.
- Taking my vitamin D supplements. Doctor tells me to take them, so I do.
- Seeing a psychiatrist regularly, and keeping my anxiety and depression as far away from me as possible with a little help from medication that prevents huge mood swings and insomnia.
- Doing psychotherapy and cognitive-behavioral therapy. Yes, I see two different therapists, but the work they’re doing complements each other. I credit both of them for believing in me and not letting me lose my mind all these years when relationships, responsibilities, work, disappointments and health issues just seemed too much.
- Looking for intellectual and social stimuli. Since my job keeps me in a bubble and doesn’t give me much room to grow, I have enrolled in courses and seminars that might interest me, meeting new and interesting people along the way.
- Trying to learn how to manage stress. This isn’t something you learn overnight, but I’ve been consciously paying more attention to the signs my body sends me and trying to worry less, take things less personally and put them in perspective. And also not be too hard on myself when I forget about this and get caught up by stress once again. I will get there slowly.
So, mom, am I missing something?
~Am I running out of resources?
Or am I just trying too hard?~
So the results of my MRI came in yesterday and, as suspected, things aren’t looking so good. In the two years since my last MRI I have six new lesions, older ones have grown, and there was the inflammation in my optic nerve. This means my neurologist wants me to change medication fast. A “therapeutic escalation,” she calls it. And, for once, I agree with her.
I’ve always resisted moving up to the second-line treatments because of their risks. My first experience with disease-modifying drugs was with Avonex, an interferon, and that was a nightmare. Even though the injections were weekly, the flu-like side effects were unbearable. I took Avonex for ten months and there was no paracetamol that could help prevent the fever and the horrible muscle soreness that came with it. But that wasn’t the worst. Blood tests revealed my liver enzymes were high, my thyroid was malfunctioning, and the MRIs showed the disease was progressing. So in November 2012 I changed to Copaxone.
At first I was worried about the skin reactions Copaxone is most famous for. I had seen pictures on the internet, and knowing how sensitive my skin is I never thought I would make it. But fortunately I got along with it well. Never had any major issues and even ended up getting used to the daily injections and carrying them around with me in ice pads when I went away. It was a nice relationship that I didn’t want to quit, but my MS is unfortunately stronger than Copaxone.
So now I have to consider my options. There are no more first-line therapies available, unless I’m willing to wait for Tecfidera. At the hospital they told me more six months before it becomes available, but I’m not sure I trust that estimate. Tecfidera was supposed to be approved in 2014 and now they’re pushing it to 2015. That leaves me with Tysabri and Gilenya. They’re both much more aggressive drugs. More efficient, for sure, but also with more risks and side effects. They’re also newer. While interferons and Copaxone have been around for almost 20 years, these two are much more recent, which means risks in the long run are not fully evaluated yet. Am I scared? Yes, I am, but maybe it’s time I start taking more risks. And not because I don’t feel fine. Right now I feel like I could train for the marathon, have a baby, start a family, write a thesis, go on adventures and marvelous vacations. But at the pace the disease is progressing, how am I going to be in ten years time? I have to consider that carefully instead of relying on how I am feeling in the present.
Luckily, people on Twitter have given me great feedback on both Tysabri and Gilenya. It feels encouraging to know that they are responding well to the therapies with no major problems. I have to hold on to that. I also hold on to the countless studies that are published every month about multiple sclerosis. There are a lot of avenues open to explore, from creating vaccines to the viruses that may be connected to the disease, to investigating the leaky gut syndrome, developing remyelination drugs, discovering mechanisms to switch off autoimmune conditions, plus all the buzz about stem cells… There is a lot going on and I believe the pieces of the puzzle will come together and it will all bear fruit sooner than later.
Meanwhile, my IV treatments are over and my symptoms improved, though I’m still not seeing totally clear. My neurologist said that it could still take around three weeks for the methylprednisolone to fully do its job. During these three weeks I will be thinking about Tysabri and Gilenya so we can discuss it further when I see her again in the beginning of October. I hope the side effects of the steroids will pass, as I’m feeling accelerated and having a hard time sleeping. My blood pressure is bungee jumping and my heart racing. This is all normal, but still annoying.
Now it’s time to put my life back on its tracks after this interruption. Today is college night and tomorrow I’ll go back to work. I’m hoping I can see my girl friends next weekend and talk about frivolous stuff and forget about diseases. I do have a lot swirling in my head. After something like this you can’t help evaluating your life all over again and wonder about the future, about your dreams, daydreams and objectives. Oh, and the conflicts. This relapse reminded me of what is wrong with some of my relationships and is giving me an opportunity to look at so many latent conflicts. But I will leave all that for another post. Right now I’m going to get some air.