When it is hard to Mommy… 😔

Today was the first day when I really had to fight to be a Mom, because the migraine was winning. It started last evening and I thought I will just sleep it off, but I couldn’t sleep much, yet the pain was not that bad. Then just before we were supposed to wake up it just turned up. So I took Imitrex and went to get the little pumpkin from his crib (just turned 18 months this past week). 

He just recently started walking so that is all he wants to do 😂 and I was just looking at him like how about watching Baby Einstein for the whole day and cuddling on the sofa or spinning your spin tops? (Kid can spent hours spinning those, is just obsessed) But no, all he wanted to do was walking from the kitchen to the bedroom and back, about a million times. My knees buckled, I saw stars everywhere, I had to hold on to the wall. I really thought I would faint. I never felt this bad. 

It is my rule to not let him know that there is something wrong with me, however bad the pain gets there is always a smile on my face. I will never say “I have a headache” in front of him. My mom did that. She also used to get herself locked inside their bedroom, curtains drawn, for 3 days, looking like a zombie. It made me confused, very confused.  

After his midday nap I have somehow managed to cook him scrambled eggs, his favourite, ensuring smooth sailing through lunch time 😂. It was almost like he sensed something was up, because that child does not wait for food, yet there he was, standing near the stove, observing my every move. Then we ventured out for our afternoon walk, spoiled once again by the horrible weather, with the threat of thunderstorms looming over us. (Doesn’t help with the whole headache situation)

And then it was Daddy time. (Which pretty much means 1.5 as much work for me, but hey, the kid is happier and I can go to the washroom by myself 😂)

Hoping for a better tomorrow, kids don’t deserve Mommies with brains half eaten by debilitating pain. 

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The evening migraine 

So most people are familiar with the weekend migraine, when the let down from the stress of the whole week causes a migraine. Or the ever popular vacation migraine. The last week or two I seem to be getting an evening migraine 😂. I have mentioned in the previous blog post that I am going through a mini migraine hell,well, this is it. Every evening, when I put the little rascal to bed, my head just goes nuts. Throughout the day it is the normal livable chronic headache, but then it just gets unbearable. Exactly like the weekend migraine. 

And it makes no sense to me, because I am not stressed, so there is no let down. At this point taking care of the baby is not much of a job, it is more or less just fun, because he is very easy going and independent. We go for nice long walks every day, he plays by himself, we play together, he naps for 2 hours, it really is fun. 

It is possible that the whole lower back issue messed up everything so badly that now I am going through some sort of withdrawal or something, since I was taking a truckload of anti inflammatories, muscle relaxers and other things for two or three months straight. But there was no other way, it has gotten to the point where I couldn’t walk anymore. 

I hate this. I hate the fact that after living with chronic migraines for well over 15 years, I still can’t deal, they still find a way to get to me, to surprise me, to win.

And then I get into the whole medication dilemma. Do I take something? When that is most likely the reason why I am in this whole mess or do I just suffer? And I am no sissy when it comes to handling pain, but these migraines are intense, they are take me down to my knees kind of migraines. They feel like someone took a baseball bat to my head. 

Rant over. I just hope it gets over quickly. I will try upping my cortisol and see what that will do other than making me all lovely and puffy like the Pillsbury Doughboy. Fingers crossed. 

 

Is honesty the best policy?

Most of you will agree with me that honesty is the best policy and to be honest, you will not find most honest person than me. It has gotten me into a lot of trouble, it has cost me lot of friends, got me banned from web sites, heck, my own sister is afraid of me. I do serve it as it is, with a straight face (and not just because of the medical Botox). 

Why am I  this way? I think it is just the way I am. One thing to consider is that I am the last of 3 daughters, so I needed to be able to be able to fight for myself and to be amusing for the adult company I often found myself surrounded by. Another thing to consider is that my parents really did not want a third child (an unfortunate thing I have overheard when I was about 6-7, let’s not go there), and really did not want another daughter, but to make lemonade out of the lemons they were given, my mother has decided to make me into her little companion, taking me into coffee shops and discussing astrophysics, world politcs and philosophy with me, bribing me with desserts and buying me cute little outfits (eventually leading to major shopping addiction). 

Another thing that has only added to me being brutally honest is living with crippling migraines and eventually with adrenal insufficiency (having a couple of possibly life ending adrenal crises will do that to you, when you realize that you can die at any moment). I don’t know,  suddenly,  it is really difficult for me to be all nice and ‘count to 10’ when I talk to people who don’t realize and/or appreciate how easy their life is and how I would chop off my leg just to be as healthy as they are. 

But boy-oh-boy do people hate it. They really do not like to be told the truth, they are not used to it at all. They are so used to the political correctness it is shocking.  They would be much happier if I would lie through my teeth, smile through it all and just went away, we would still be the bestest of friends. People mostly respect me, they don’t really like me. My own sister is kind of afraid of me. Why not change? I do not know, I feel like life is too short (feeling the pressure you could die the next day will do that to you, I guess) to play games, we are all adults, I am not stupid or cruel to not know when enough is enough and I will ‘lie’ when it is necessary. 

But when am I a complete sissy and will lie through my teeth? When it comes to my health. I can’t be honest when it comes to telling my loved ones how I am really feeling. For example right now I am going through a mini migraine hell, yet no one knows. My mother has no idea, my husband has no idea. I am barely coping, Every time I put our toddler for a nap I collapse on the floor and try to think (ha-ha) how to survive the next few hours until my husband gets home. Then it is just a few hours until he goes to bed and I try to sleep, or just lie down and try to relax.  I have never been honest about my health with them, I find it too scary, I don’t want them to be scared, I don’t want them to think that I am in that much pain or that I am afraid that another adrenal crisis is coming and I am afraid that I will die. 

See? I think that I am not such a tough cookie, such a bully. Deep inside, I am just a scared little girl that thinks that the best defense is one hell of an offense. Just as all the other bullies are. 

Cannabinoids and migraines 

So, here we go. Something I was wondering about for a very long time and kind of always knew the answer to: marijuana as a treatment for migraine pain. In my mind it was always a no brainer, why would it not work? If it calmed cancer pain along with the nausea why would it not do the same for migraine sufferers? But I never had a chance to try it (however absurd it sounds that a person in between 15-30 years of age did not have a chance to try weed to treat her migraines) . 

According to the latest studies, cannabinoids are not only effective in helping with acute pain, they are also effective in preventing migraines. And not just like a bit effective, but as effective as amitriptyline (antidepressant used for years as a preventive. I, personally, hated it). 

To be clear these were actual tablets containing tetrahydrocannabinol (THC) and cannabidiol (CBD) combination, people were not smoking weed or consuming any marihuana containing products (THC, though, is the ‘mind-altering’ compound). 

But weed would do the same, of course, it is just more difficult to keep the dose consistent. I was always all for it, and not because I wanted to get high or was some kind of a hippie.  I just think it is easier on you than any of the preventives I have ever tried (and none helped). 

I would never smoke it, I don’t want to add lung cancer to the list of my issues, but I am trying it as soon as I get back to Canada. I did my research before I left and I qualify for the medical license (although by the time we will be back weed will be legalized in Ontario). 

If you have any experience with weed and migraine pain, please, do share. I would appreciate it. 

Dose of Zen

For the last couple of years I have tried to live a very optimistic life. I have read countless books on Buddhism, done yoga daily and really tried to be present and conscious of everything I was doing. Mindfulness was the word. Nothing would upset me, get me out of my Zen zone, I was known to be this super calm person. ‘Calm blue ocean’ was the mantra. 

Then, after our son was born, a year and a half ago, and my OCD kicked in big time, all of it went away. While I was still in Canada, for the first 6 months of his life, it was kind of ok, I had his grandparents to help, which was just unbelievably great and I will be forever grateful. But when I got back to Russia to join my husband I just turned into this miserable, negative person I don’t recognize. 

And I hate it (see, here it is again, ‘hate’…), I can’t stand being this way. So what do I do? I spend all of my energy, every single day, pretending that I still am my former optimistic self and that nothing has changed. I know that everyone knows that the smile is not as genuine most of the time, but most people are too busy to really notice that anything is off. My hubby, bless his soul,  is a typical guy, and doesn’t really notice these kinds of things and will happily take a fake smile. My parents, who only see me on Skype every weekend are too focused on the little one to really notice me, so again, I am good there. And I don’t interact with anyone else. I don’t have any friends here. 

So while previously I might have needed only a dose of Zen here and there, now I need it like every nanosecond.  What has changed? Was it the baby? No, the baby has nothing to do with it. I love that little boy (although it took me a long time to look at him and feel love-love, not just I have to take care of you kind of love). I think the bad aftercare I have received following the C-section and all the health issues that followed and never stopped leaving me to be in constant pain at this point are making it difficult for me to be genuinely happy and optimistic. I am also no longer happy being here, in Russia. I see my husband not being happy at work as well, only sucking it up because this will allow us to have everything we have ever dreamed of once we get back home. 

I do not want to be a miserable person, that is not who I am.  And I hope that I will get back to my old self really soon. And in the meantime do not mind me pretending. 😉

New migraine treatment in the works 

Couple of months ago I mentioned a new migraine preventive in development involving CGRP antibodies (calcitonin gene-related peptide). So it looks like 4 drug companies have drugs in development at this point. These will be injectables that will be administered about once a month and promise to reduce frequency of your migraines by about half. Not bad, eh? 

I would be first in line to be honest so the question we all usually ask is how much will the few pain free days cost me? Well, I advise you to sit down for this one because it is a big one. The price tag will be around $8500 US. Now that is a bit hard to swallow if you ask me. I had issues with the $1000 a pop for Botox every 3-4 months. And for me Botox works well, usually well enough that I don’t even need a preventive.

Now don’t get me wrong, I completely understand why they are asking the 8500, antibodies are not easy to manufacture. They are not easy to develop, test and get approved. But I still have an issue with pricing a medication for such a common condition, affecting millions of people, usually people that don’t have insurance or income high enough to afford basic necessities, so unreasonably.  

I was in a situation in my life when I did not have insurance and I thought twice if I would take that Imitrex because it cost me $40/pill. That is not the way it should be. Ok, rant over 😂

So let’s see, I am really excited and hopefully I will still have insurance by the time it comes out 😀. If anyone has been part of the trials please do share your experience, I would love to hear it. I was part of the group that brought Botox to migraine sufferers in Canada. 

Here is the link to the article about the pricing of the new medication: CGRP antibody medication pricing

Here is a link about CGRP antibodies for migraines: CGRP antibodies and migraines 

Something new yet again

A lot of new things happened in the last few months.  There was a lot, and I  really mean a lot, of doctor’s appointments and a lot of pain, heh. Just when I thought I had that pain thing figured out…..

What started out as what I thought was a flare up of my arthritic hip turned into my worst nightmare.  When the pain in my left lower back did not go away and was only getting worse, to the point I could no longer walk, sit, stand, lie down (do anything, really), I finally gave up and told my husband it’s time to go to the doctor. After visiting our very expensive private clinic here in St Petersburg I was told by one doctor that I had a hairline fracture of one of my vertebrae, then  the next one said there is nothing wrong with me, then I had a minor nervous breakdown and told my husband to take me somewhere else. (At this point I already had an X-ray and an MRI done) 

After a few phone calls we got a recommendation for a clinic and made an appointment for that evening.  The doctor spoke only Russian so my husband acted as a translator.  He took a quick look at the MRI and told us that I have no fluid in between my last two vertebrae. He prescribed couple of medications (anti inflammatory stuff, something like Vioxx, nothing much for pain, as Russians don’t like to prescribe strong pain killers). 

To be honest I was shocked by this. After reading a little about it, it is clear that this will stay with me for the rest of my life, so I should get used to the pain and boy, oh boy, the pain is not going away. Yeah, compared to the onset, when it was about 8/10, now it is still about 5-6/10 every single day. Sometimes worse. From my readings young athletes do seem to suffer from degenerative disk disease, so yet again, my theory that all that sport was not good for me is proven. 

And you can imagine what all the anti inflammatory stuff, along with all that ibuprofen and occasional Percocet has done to my migraines. Everything is yet again completely out of whack. I really do not know how to get everything back to where it was…..

Who cares?

The last couple of months were tough, but the last couple of days were interesting. I came to the realization that I might have Post Parfums Depression, most likely thanks to Chrissy Teigen,  however ridiculous that sounds. Her essay (if we can call it an essay) in Glamour magazine made me think about what I was going through since the birth of our son in January of 2016. And to be honest it was a good match and then some.

To put all the cards on the table, I am not a big fan of depression as a condition, never liked it, always thought those people should seriously reconsider their lifestyles and approach to life. I have always believed in PPD though. I was also labeled  bipolar with OCD by a psychiatrist, whom I have never seen again when I was around 15. And as some of you might know from reading my blog posts I do have a bunch of health issues (severe chronic migraines, daily headaches, adrenal insufficiency, Rathke’s Cleft cyst on my pituitary gland, osteoarthritis of my hips, insomnia  and so on). So I don’t know why I was ignoring how I was feeling for so long.

How was I feeling? I ceased to exist. I became this machine that performed scheduled tasks to keep the baby happy, healthy and thriving. My body began to shut down, my muscles and joints hurt so much I felt like collapsing to the cold floor in the bathroom and just never moving again. My head just throbbed, all day long,  every second of every day, especially after I put the baby to sleep at night. I had no a petite and my intestines and stomach would just spasm out of control randomly. My hands would shake. 

I lost interest in every single thing that I have previously loved. I no longer took pictures, cooked, did yoga or exercised in any way other than our daily walks. I stopped reading, watching TV, communicating with my family (we are currently abroad because of my husbands work, so I just keep pretending everything is absolutely fantastic so that my mother doesn’t go crazy but the amount of emails and calls has dramatically decreased).I stopped taking care of myself, no more healthy eating, daily meditation, excessive Korean-style beauty routine.  

And this has been going on for the past 14 months and I have been obsessively trying to pretend everything is fine, or is going to be fine. Until I have read that article  it is not fine, I am not fine. I am barely surviving. Yet I feel that no one cares and why should they. I am at home, no care in the world, everything provided for me. My child is the happiest baby I have ever seen, he is healthy (all I could ever ask for) . I live for every second I spend with him, otherwise there would truly be nothing.

So there, here it is, black on white, something I wanted to say, scream from the rooftops for some time now I just couldn’t find the strength,  the time, the “marbles” to do it. 

Topamax kind of life

I don’t know how many of you have experience with Topamax, or know anything about it, but it also goes by another name: Stupomax or something like it. And I am walking, living proof of that (once again). It has this lovely side effect of making you forget what you were thinking about, you basically always have everything “on the tip of your tongue”. (And in my case I  also have a crazy case of tingly fingers, I  don’t even think thing lyrics describes it….)

I have tried Topamax once before, when I was in university, but I had to go off it for the exact same reason. School and not being able to find words don’t mix well together. But now, I have figured I really don’t have to use my brain too much more taking care of a one year old. Well, to some extent that is true, but at the same time I do notice it and it drives me nuts. My husband notices. He knows it is the meds. At first he was really confused, now we laugh about it. 

Sometimes though I really do feel like the biggest idiot. I was always big with words, I was always the one using the crazy , complicated,  fancy ones, in perfectly thought out sentences. And now it is down to “Where is the thing we use for that thing, you know?”. 

It is not only that, I  also have hard time keeping my thoughts on track. For example while getting ready I will start with one thing, forget what I was doing, or wanted to do next and so on… really sad and funny at the same time. The thing is the Topamax is helping and I really am not doing much.

I really don’t know if I should stick with it or not. All I know is that I don’t have many other options when it comes to preventive medication for migraines. 

“It’s not a tumor!” 

Couple of years ago I have discovered that I have what we now call a Rathke’s Cleft cyst on my pituitary gland. It is 3 mm big. We came across it by accident.  I have finally found a good endocrinologist for my adrenal insufficiency and she requested all of my scans. And I have had quite a few brain MRIs because of my migraines  (and CTs and who knows what) along with scans and X-rays of pretty much every single part of my body. 

The call came pretty quickly. The secretary asked me if I could come in for an appointment the next day, during which the doctor explained that while it is nothing serious she would like me to have another MRIS of my pituitary gland within a week. At this point I was wishing for a bottle of Pepto Bismol.  

That MRI did confirm that there is something 3 mm big, fluid filled on my pituitary gland.  It has been there for a couple of years and no radiologist has ever bothered to notice, how sad. It makes me wonder what else they have missed or what is the point of even having these investigations if they are not even looking at the scans….

After reading up on Rathke’s Cleft cysts all it pretty much explained all of my symptoms that have been bothering me for years so I have decided to ask around about the option of having it removed. 

After meeting with a group of specialists I was told that it cannot be causing my symptoms and no one would ever operate on such a small cyst. And that was it. But I was told that it is crucial for me to have a yearly MRI scans to observe it. 

To tell you the truth my feelings are beyond mixed. So it is crucial to see if it is not growing, because then it will be soon soooo easy to operate, but they won’t touch it now even though it is pretty much half of my pituitary gland. And I might not have a medical degree  (although I have about 80% of the courses done), but when about 50% of your pituitary gland is occupied by a foreign body and you are experiencing symptoms linked to pituitary gland problems…… calm blue ocean, just breathe through it. I  know that in the US these operations are done, most likely because of the way insurance works. Our “free” Canadian insurance just doesn’t want to pay for it…