Head full of doubt, road full of promise.

I’ve been drawing again lately, for the first time in a long time. I used to do it in some capacity every day, just as I would write poetry often. But, the neck and head position required by drawing would aggravate my headaches to a degree that I couldn’t take anymore. The same thing would happen with my rib pain from the sitting position. This has been another bitter blow that pain has dealt me. The list of hobbies and activities that don’t make the pain worse is dwindling down to nothing. But that’s just it; I can’t let the pain take away everything that makes me happy. And when I truly think about it, why should I? I’m in pain anyways, whatever I do. So, I might as well be doing the things that I love and finding some happiness in the process. And I’m not saying that I’m going to pick up all of my old hobbies – like basketball and volleyball. I know that doing those things aren’t an option – pain-wise and Marfan-wise.

Moderation is the most important factor that I’ve found in containing the pain to a bearable degree. I draw for about 20 minutes, take a break and then when my neck and ribs feel a bit better I pick it up again for another 20 minutes. This doesn’t fix the problem entirely but it helps. I try not to do it for more than an hour a day, sometimes though, I break that rule – and pay for it. It’s given my attitude a bit of an uplift. It’s silly but I feel like I’m taking something back from my condition, like I’m not letting it get the better of me for once. Looking at it solely that way, like I’ve somehow won this one battle, makes me feel a bit better about my current circumstances. 

I’ve been sleeping, a lot because of the beta blockers. And when I’m not sleeping I’m either trying to or wishing that I was. I’ve spent about 42 of the last 48 hours asleep. Impressive for an insomniac. I think my days of being up all night may be behind me – although, the beta blockers do list insomnia as a common side effect so I guess I’ll see. That’s not very nice; that they can make you super tired but also make it so you can’t sleep.

Now for a coincidence – my mom was just prescribed the exact same beta blocker (Propranolol) as me – only for headaches and not her heart. I was disappointed because my headaches haven’t gotten any better since starting it but I read something online that said it may take 4 to 6 weeks after getting to the appropriate dose (mine may not be high enough) before you notice a change in your headaches. I really hope that’s the reason, but not as much as I hope that it helps my mom’s headaches. It’s been 12 years now since the initial headache started. She had that one all day every day until a couple of years ago. She still gets it at least once a day but it has mellowed a bit.

During the first couple years of having the headache she was scared that she was going to drop dead at any moment – the pain was so severe that she was sure there was something very wrong. I was shocked to learn that no scans or tests had ever been done to make sure that there wasn’t. Her doctors had never thought it necessary, no one (medical professionals) did anything to help her. I’ve watched my mom suffer with this for a long time now. I’ve seen that look in her eyes that only someone in a lot of pain has, everyday for the past 12 years. I didn’t understand it when I was younger; why she stopped going out as much and being able to attend as many of my school events as she used to. I was 7 when this started, and how it feels to live in chronic pain is something most adults can’t even comprehend. I often thought it was something that I had done, like I was in trouble or that she was just being mean when she said no to things. Now regrettably I know how much harder those things were on her than me, especially if she knew that it was making me unhappy. I seriously hope that I kept that to myself and didn’t hurt her more with it.

Soon the chronic headaches turned into widespread chronic pain, and eventually she was diagnosed with fibromyalgia. A diagnosis that we still don’t know whether to believe is correct or was just handed to her by doctors too lazy to find the real answer. And I 100% believe that fibromyalgia is a real condition so don’t get me wrong on that. I just wonder if because it covers so many symptoms if they just stuck my mom with that diagnosis instead of putting in the effort to find another cause. Or if the original cause of the headaches remaining untreated did in fact morph into fibro and start causing the widespread pain – since we know that many cases of FM stem from acute injuries not being diagnosed and properly managed. Either way, she’s suffered and continues to. I would do anything to give her a body that doesn’t hurt, to let her live her life again instead of just surviving it.

If the Propranolol helps my mom’s headaches that would be the first step forward in her illness in 12 years. It wouldn’t fix everything but it would fix something

“There was a dream and one day I could see it.
Like a bird in a cage I broke in and demanded that somebody free it.
And there was a kid with a head full of doubt,
So I’ll scream ’til I die and the last of those bad thoughts are finally out.”
– Head Full of Doubt, Road Full of Promise by The Avett Brothers

A new step: Beta blockers.

As I’d mentioned a few posts ago, I had a doctor appointment last Friday. I told my gp about the change in my heart rate, and we made the decision that it was time for me to start beta blocker treatment. In many ways this was a bitter step for me. It was an affirmation that there is something wrong with my heart, it’s reality. It’s a scary thing to think about. When I write and talk about the aspects and dangers of my disorder in regards to my heart there’s a certain technical feel to it, I feel like I’m just talking facts and medical jargon. It’s important to me that I switch of any emotions that might personalize what I’m saying because I feel stronger and safer that way – it helps me cope. But, there are certain moments and milestones that hit home hard for me. Being reminded three times a day when I take this pill that I may very well need heart surgery someday or that I’m at 100 times greater the risk of aortic dissection makes it that much harder to keep those thoughts out.

The beta blocker my doctor decided on is Propranolol. It is also prescribed to treat many different types of headaches so she was hoping that it may help mine. To start with I had been taking 40mg three times a day, equaling out to 120 mg, but my heart rate started to climb again, so we upped the dose to 60mg three times a day. They definitely do make me more tired and weak, some days being worse than others. They’ve also made my circulation and Raynaud’s syndrome worse, where my thumb and sometimes other fingers and toes turn dark purple and become freezing cold. I’ve been experiencing the vivid dreams that can come with this particular beta blocker, but so far not the nightmares that they warn of. As for insomnia, I don’t know whether the pills are making it worse or if I’m just going through another bad spell. My headaches haven’t gotten any better, but I don’t know if I’m on a high enough dosage yet for that. My current dose is still not as high as I’m meant to get it up to, but they recommend a steady, slow increase so that you can safely monitor your blood pressure.

I feel very overwhelmed today. Family and social stresses in combination with the fact that my body is wreaking havoc is beginning to take it’s toll. I’m exhausted and in a lot of pain. I’ve been very lethargic while on the beta blockers and if it weren’t for the intolerable heat I’d be trying to nap right now. I truly, truly hope that those who are healthy do not take it for granted. I’d give anything in this world to have that one thing.

On an entirely different note, here’s a photo that I took at the height of flooding season. I loved the way that the reflection on the water looked with the beautiful sky.