Talk about a long ass hiatus! I stopped writing per the advice of my attorney – when it seemed that my “wasband” was trying to use my blog – and what I wrote about – against me in court. I don’t have anything to hide, nor do I regret anything that I have put out there for all to read, but I listened to her anyway, and went silent.
When the period of “censorship” was over (court decision made) I intended to take up writing and sharing again….but then the summer turned into fall…fall into winter…winter into spring….you get the point. I just didn’t write! I’m still HERE , I still have MS, and funny shit keeps happening, but I wasn’t writing about it. I don’t know why initially, but as more and more time went by and I continued to receive email alerts that someone new was following the blog, I began to get nervous. Rather than the great creative outlet it once was, I began to second guess myself – wondering if a story I wanted to share was “good enough” for everyone to read; If my writing was worthy of people’s time. It became a burden. Something that I stressed about; felt guilt towards and so I continued the silence…
Today I have decided to break the silence and write. I recently found myself faced with a question…
Does being vain trump being in pain?
Would you choose how you look, over how you feel?
One could argue that these two things are intrinsically related; that it is important to feel good about how you look. But I am talking about a specific feeling – PAIN. Would you choose to be in pain, if you knew that you could/would look good? That what the outside world saw was someone that was rocking it, handling/managing their life and taking care of themselves? We all know that people’s perceptions of us are strongly linked to how we look. It’s actually one of the things that many of us struggle with every day. The “I may not look sick, but I feel like SHIT” syndrome. People make judgements (intentionally and unintentionally) based on how we look. It may be a sad commentary on what matters in our society, but it is the truth.
I’ll start out by simply saying…it SUCKS. It sucks the big moose kaka! It is the ONE constant in my life these days; the ONE part of my MS that just does not want to give me a break. It’s there every single day when I open my eyes and it is STILL there (and usually worse) at the end of the day, as I shut my eyes and hope to fall asleep.
I have tried a number of different pain medications, in the hopes of finding one that will finally work, and will provide relief from what has become a faithful companion in my life. Being “used to it” doesn’t make it better; it just means that I have learned to try and cope with it. When Shawn I first started dating, he encouraged me to go and talk with my doctor – to be honest about the pain. My mantra of “It doesn’t matter how bad I feel, as long as I look good” just wasn’t cutting it.
Our visit with the doctor and my open and honest confessions led to me giving Methadone (Dolophine) a try. Perhaps your initial reaction in similar to the one I had…METHADONE?!?!? Isn’t that what they give recovering heroin addicts?!?!? Why yes…yes it is. But it also can be used as a pain medication, as it is actually synthetic morphine. Much to my surprise (and DELIGHT) it worked! Not 100%, and sometimes not even 50%, but it did provide me with more relief than any other medication that I had tried.
As with anything good in life, this new “magic pill” did come with it’s prices. Being a highly regulated narcotic, my doctor would only write a one month’s prescription at a time. That meant calling and dropping into his office much more frequently than I had ever done in the past, and certainly way more than I wanted. Another hassle was that often times my local pharmacy wouldn’t have enough on hand to fill my 30 day prescription! Which always confused me. If they know that I get it filled every 30 days and it is for the same amount, one would think that they could make sure to have it, knowing that I would be paying them a visit a day or two before the 30 days was up. Are there not pre-orders in the pharmacy world? Apparently not. Or they couldn’t do that. Which meant finding another pharmacy, one that would have it on hand. That meant going somewhere new, with staff that didn’t know me, and I would have to provide identification each time. Certainly not a big deal, but just one more small inconvenience.
Small issues aside, it did help! That was huge!
For the past 5 years my mobility has improved immensely. I have not had to use my cane or Segway! (The “anniversary” of putting both away is November 11th!) The one thing that has not improved is the pain. Finally finding some relief was amazing! And it remained amazing…for a while at least. The changes didn’t happen suddenly, but instead… slowly, over time. The dose that I was taking wasn’t working as well, and the pain began to creep back in. It was subtle, and even when working I still had pain most of the time so I really didn’t notice. Until… I did notice! Once again, the pain was BAD!
Again, per Shawn’s urging, I made another appointment with my doctor, to talk about the pain (what a pain in the ASS!) I learned that as with most opiates, my body builds up a tolerance to the drug and so over time the only way that I can get the relief it once provided is by increasing my dosage. Which was not an option for me. I had already begun to be concerned about the length of time that I had been taking it, and certainly did not want to take more of it.
So we talked about other options, and he suggested that I try Amitriptyline. It is most commonly used for depression, but has been known to help with pain as well. I was willing to give it a shot – thinking “What’s there to lose? It can’t get much worse than the pain that I am experiencing?” Boy would I realize how stupid that thought was…things definitely could be worse.
I have learned to ask two simple questions whenever a new medication is being prescribed.
- Are there known side-effects?
- Can I drink alcohol with this medication?
I was given the green light on having my drink of choice when wanted and was told that the only “significant” side-effect was sleepiness. They weren’t kidding! The first three days I took it Shawn had a hell of a time trying to wake me up in morning. He would shake me and talk to me, over and over again. I would apparently respond with some senseless babbling and then just konk out again. It took him over an hour to just get my ass out of bed! And this was when taking only 25% of the dose I would eventually build up too!
As the dose increased and the weeks went by, the pain did get better, and for that, I was grateful. It made me realize how bad it had gotten before going to the doctor again. Perhaps it was because I was fully immersed in this small amount of bliss that came from finding some relief from the constant pain. Or maybe it was just because I don’t pay much attention to my weight or what I wear from one day to another. But, for whatever reason, during those first few days/weeks and months, when I was back to living with pain that was “manageable” I began to gain weight. Rather rapidly, I might add. Within 8-10 weeks, I put on 20 lbs!!!!!!
I realize that given my starting weight that adding 20 lbs might not seem to many to be “pushing maximum density” and some even say that I now look “healthier”, but for me, this was a big deal. I no longer felt good about myself. No longer had confidence in how I looked.
I LOST my BBH!!!!!
For the first time in years, I found myself extremely self conscious, and it didn’t help that once I hit 15 lbs. many of my clothes no longer fit and by the 20 lb. mark, I was down to very few things I could manage to get into. In my mind I was fat. Feeling bloated and embarrassed to go out and be seen, I dreaded running into anyone that hadn’t seen me (even in a few months) for fear that they would make a snap judgement and think “wow, Meg doesn’t look good” and then credit it to my MS. The last thing I want anyone to think is that I let this stupid disease “get me.” I am too strong and stubborn for that!
As I struggled to try and resolve the weight gain issue; squeezing gym visits in whenever I could and downing copious amounts of water….it suddenly dawned on me. It had been days and then weeks since I had had a bowel movement. CRAP, here we go again…..
Knowing that this most definitely could be one of the contributing factors for the weight gain I began trying to remedy the situation. Although I was already taking one dose of Myralax a day, I increased it to two (and sometimes even three). I continued chugging water and ate what seemed like a million prunes. I tried Smooth Tea, probiotic/laxative gummy bears, Dulcolax Laxative Comfort (bisacodyl tablets), GoLive Probiotic & Prebiotic Drink, Activia yogurt, Kefir yogurt drinks and the natural laxative, Senna. I never knew there were so many “full of shit” products out there on the market.
Nothing really helped. I made a point to hit the gym even more frequently, figuring I would be killing two bird with one stone – being more active would help with my GI issues and hopefully help take off the pounds. As I hit the elliptical and started racking up my miles, and spent time working on my strength training and muscle tone I realized how fortunate I have been in the past to not have body issues as an adult. I have been comfortable with who I am and what I look like. To be struggling with that now, makes me have so much respect for anyone that has chosen to take an active role in trying to combat their weight and/or health issues. It takes a hell of a lot of “chutzpah” to go into any gym where you know that people ARE going to look at you (and maybe even judge you) when you aren’t feeling comfortable in your body and confident about what you look like. I have been active my whole life, and I had never given much thought to this and I now admire anyone that takes the humongous step of not only joining but then actually going to the gym if they struggle with body image issues!
Suddenly I wasn’t the “don’t put much thought into it, throw on cloths and go” gal. I would end up going through 5 or 6 outfits while getting ready for work in the morning. Not because I didn’t like one, but because it didn’t fit. The rational side of my brain knew that the clothes that I have are in very small sizes and that there isn’t much room to “grow” in much of my wardrobe. But knowing that didn’t make it any easier when the fourth skirt doesn’t fit or when my favorite sweater is simply way too tight these days for office attire. It took a toll on my confidence and really began to “weigh on me” (couldn’t resist the pun!)
Eventually I did call my doctor’s office and the nurse suggested a suppository. My response to her was “Yes I would LOVE to try the suppository” (I did not think that was a sentence that would ever come out of my mouth!) They called in an order for bisacodyl suppositories. They did work initially but even though I continued to take Miralax, Senna and prunes it was soon back to days/weeks between bowel movements.
On a particularly down day, when I was feeling as if I was just not going to get over this hurdle and that I was going to continue to get bigger and bigger, until I eventually exploded… I googled Amitriptyline. It seems that weight gain in one of the most common side effects!?! HUH?!?! That was not mentioned! Ever! I can’t say that knowing this would have deterred me from giving it a shot, as I didn’t think that putting on weight would ever be an issue for me. But it still would have been nice to know. Perhaps the “heads up” would have made me at least notice a bit sooner?
Another thing that struck me as a bit odd – was that this medication is primarily used in patients that are struggling with depression. Seeing how I was feeling (down in the dumps, fat and ugly) I couldn’t really see how this could be a GOOD drug for someone suffering from depression!?!?!
An email to my doctor led to this exchange with a nurse:
“Dr says yes, Amitriptyline CAN in fact lead to weight gain. He suggests perhaps you try Nortriptyline. It is a very similar medication that does not usually have the same weight gain issues.”
Why the fuck didn’t they give me that one to begin with?!?! I responded with “YES…PLEASE.”
As with many medications, it is not an instant; stop taking one and start the other and I had to taper off of the Amitriptyline. I hoped and I prayed that as I came off of it, the weight would come off as well…..would make sense, right? But after a few weeks, I was back down to only 25mg/night….and I was still 20 lbs heavier! It made no sense! I was still hitting the gym, and certainly wasn’t eating a whole lot- I couldn’t, I felt so damn full all the time, thanks to the on going saga with my GI tract and ability,or lack there of, taking a crap!
This is when I made a decision, that in hindsight may not have been a great one. I decided that I was going to come completely off the Amitriptyline and not start taking the new medication until the weight came off. I made the conscious decision that being in pain was not as bad as being unhappy with my appearance. Having a teenage daughter that I have raised to be confident and to love her body (whatever size it is) I completely realized just how WRONG this decision could be viewed. That there was a strong argument for the fact that I was being a complete hypocrite. But at the end of the day, I just wanted ME back. I wanted my BBH back!!!!
This is the point in the story when my vanity driven decision goes from bad to horrible. During this period of time, that I was playing medication hold out, the pain returned. It came crashing into my life like a freight train and it was bad…REALLY bad! I realized that this was the first time in 9 years that I have gone without being on anything for the pain. It made me realize just how much the medications that I didn’t think were doing much of anything were in fact doing! Although I credit “reduction of stress” (aka divorce) for my immense improvement over the past five years,it seems that modern medicine and the power of the pills played a factor in it as well.
Much to my dismay, the weight didn’t go anywhere! Not a single pound shed! The days went on and I was in more pain than I have experienced in a long time and still unhappy with my appearance. AAAGGGGGHHH!!!!! I had thought that if I could get back to my normal weight, wearing my regular clothes and feeling good about myself that putting up with the pain would be a good trade off
I lasted only about a month and then I broke. I was still not losing any weight, but I could no longer imagine getting through the day without some break in the pain. I began taking the Nortriptyline and the pain slowly began to ebb a bit, until it was back down to what I consider that “manageable” level. I am continuing to drink water, take laxatives, miralax, prunes and other stuff, but still suffer from pretty bad constipation. I hit the gym 3-5 times a week and still – NOTHING! Not a single pound lost.
So what have I learned from this? Other than PAIN SUCKS! I have learned something about myself – that perhaps I am a bit more vain than I would have guessed? Is it horrible that I immediately assumed that “looking good” trumped “feeling good?” Given my mantra of “It doesn’t matter how bad I feel, as long as I look good” one would think that I would have known this about myself – but I guess I don’t know myself as well as I thought, because even I was a bit surprised with the conviction I showed when confronted with the question;
Pain vs. Vain?
I had no hesitation in thinking that my looks (and how I felt about myself) were more important than finding relief from the pain.
But this whole experience also made me think about what it means to be vain. The fact is that I do think about how I look and am consciously aware of wanting the world to see me and think that I have my shit together. Does that mean I take pride in my appearance and how I “market” myself to the world, or does it make me shallow or disingenuous? Does it mean that I am trying to hide from the world (behind my hair, clothes and make-up?) Or does it mean that if I feel better about how I look, that it might make the pain just a little more bearable? I choose to go with option number two, because anything that can help me get through the day, and manage to find the things to laugh and smile about has to have some depth to it. For me, it isn’t so much that I worry about others judging me or wanting to impress anyone, but rather wanting to try and seize any opportunity to show the world that I am strong!