So I was VERY VERY snippy with one of my sisters tonight (via text). I think this is a continuation, and related to, that first draft of the coming out letter I wrote.

My cousin who passed... we just found out that his service is Thursday, which is unfortunately the day of my Botox treatment. So my wife and I cannot go. There are literally four (maybe eight, if you count the day after each one when I have Botox flu) days each year when I 100% have an unbreakable commitment -- and this just happened to fall on one of them.

Plus, being out of state, it's not like I could go to the wake before Botox if that timing had worked... it's all a non-starter.

Anyway, my sister asked, I felt condescendingly, what should she tell the other cousins if asked why I wasn't there - that "I had a doctor's appointment?" And I replied that after 10 years of this she should understand that this is the centerpiece of my neurological treatment program, and it's a medical procedure -- heck, about 1/2 the people get full sedation for it. She's describing it as a check up.  But I told her to say "whatever the heck you want."

Of course, I was writing this at the peak of a migraine spike, when the pain really erodes my filter completely. Thinking all that was fine. Typing and sending it, I should have known better. I immediately said just that. Said it wasn't an excuse, just an explanation.

But afterwards, I did think it was related to the sentiment behind the letter. Part of me just very much trying to put up a shield against being judged by them. It's an unusual color for me. I don't like it.  It definitely has inspired me to revisit the letter. Either tonight, or tomorrow.

Not sure when we are going to see them, but that doesn't matter. At this point, the letter is very much for me.

Speaking of doing something for me, and partially burying the lede for today... feeling down this week with all this swirling around, this morning I decided was the time... so I now, for the first time have clean shaven legs!

Ok... pretty much clean shaven legs. I think tomorrow, there's a bit of a punch list of areas to revisit in the morning. But that's ok.  I think if I was in a better head space it would have been a lot more affirming. As it was, it just felt like a new part of my routine... which is in and of itself affirming in it's own way.

Hope that makes SOME sense

Love,
Allie

Some friends noticed when I started shaving my legs at a party.

The last time I went to that summer party one of the ladies said she wished she still fit in her Lily Pulitizer skirts. 

I got a Braun IPL over the summer to help with keeping the legs clean shaven.

To my simple brain I would just get on and tell them, having it hanging over you must cause you problems. Saying that my sisters reaction was I am not surprised!
 Sometimes I think we just overcomplicate things ,whats that engineering term KISS.

Shaving can be so affirming. When first coming out I shaved the mustache. Then the chest hair. Next the legs. I couldn't believe how good that made me feel.
As far as the migraines, only a fellow sufferer can know how debilitating this can be. Any treatment should be not stopped. I agree! They will get over it. I had one this past weekend, luckily I was able to catch it early with meds and it went away quickly.
I hope the Botox helps you Allie.
Gina

Quote from: davina61 on March 12, 2024, 04:52:38 AMTo my simple brain I would just get on and tell them, having it hanging over you must cause you problems. Saying that my sisters reaction was I am not surprised!
 Sometimes I think we just overcomplicate things ,whats that engineering term KISS.

Not simple at all, my friend. I am in agreement with you. I would very much like to get it done. It's just logistics at this point. They all live 75-90 minutes away - plus one of them is currently in AZ for a few weeks.

So it's just been a matter of trying to figure out WHEN we can all get in the same place.

Quote from: Gina P on March 12, 2024, 05:51:37 AMShaving can be so affirming. When first coming out I shaved the mustache. Then the chest hair. Next the legs. I couldn't believe how good that made me feel.
As far as the migraines, only a fellow sufferer can know how debilitating this can be. Any treatment should be not stopped. I agree! They will get over it. I had one this past weekend, luckily I was able to catch it early with meds and it went away quickly.
I hope the Botox helps you Allie.
Gina

Aww, thanks Gina.

Yeah, when first shaving my chest I really remembered how it made me feel. And I find my weekly electrolysis session incredibly affirming. I just wasn't in the head-space to enjoy doing my legs as much as I should have.

As for the migraines... the Botox has been helping. What's odd is that it's indicated for migraines, and it hasn't been really touching mine. I still haven't had a migraine-free day in more than 10 years. But it has been eating away at my clusters. We have to tell insurance that it is making my migraines less intense (since not less frequent) to keep full insurance approval, since believe it or not, Botox is not indicated yet for clusters. There is not yet enough research on it. Both my neuros think it will happen, and say that they keep reporting my results so hopefully it'll be easier for those who (unfortunately) follow me down this road.

Quote from: imallie on March 12, 2024, 06:08:21 AMSo it's just been a matter of trying to figure out WHEN we can all get in the same place.

Allie,

I have never been very close to my siblings, so I am having a problem understanding why you need them all in one place. You are writing a letter, so why do you not send it to all of them at once? You already have the support of the two most important people, your wife and son. In my mind everyone else is just the icing on the cake.

Wishing you the best with lots of hugs

Ellen

QuoteBut afterwards, I did think it was related to the sentiment behind the letter. Part of me just very much trying to put up a shield against being judged by them. It's an unusual color for me. I don't like it.

There isn't a syllable of ^this^ that I don't love. You don't spare yourself and even in the throes of emotions, you're still running system checks. You've a beautiful mind, Allie.

Quote from: EllenW on March 12, 2024, 10:45:12 AMAllie,

I have never been very close to my siblings, so I am having a problem understanding why you need them all in one place. You are writing a letter, so why do you not send it to all of them at once? You already have the support of the two most important people, your wife and son. In my mind everyone else is just the icing on the cake.

Wishing you the best with lots of hugs

Ellen

Hi Ellen -

I understand, and I'm really sorry you've never been very close with your sibs. I am really close with mine, just not geographically. They all live close (enough) together, though. And there's no way I'd ever want to tell any without telling all.

And we (my wife, son and I) all agree they need to know next, before we go onto the next group... so it's just a logistical thing.  We will sort it out. Hopefully sometime in April. March already seems kind of a lost cause what with one sister away, we have commitments one weekend and then it's Easter.

Oh and by the way, postscript on my little lash out at one of my sibs last night. Another sister called me this morning saying she was glad that I did it, and that it was totally appropriate, etc...

I told her that while I agreed that what she said was triggering, I should not have allowed her (unintentional) judgment to bother me and I certainly shouldn't have replied like I did. So I was glad she enjoyed it as a spectator sport, but I still regretted it.

Quote from: Oldandcreaky on March 12, 2024, 11:54:29 AMThere isn't a syllable of ^this^ that I don't love. You don't spare yourself and even in the throes of emotions, you're still running system checks. You've a beautiful mind, Allie.

I live inside my head, it can be a scary place sometimes. So I might as well straighten up the furniture and repaint a few walls while I'm there, right? Try to make it a bit more cozy?

But I do appreciate the kind words, very much so. ❤️

Halfway through my 24-hours of needles...

Electrolysis this morning, and Botox tomorrow morning.

This morning's electrolysis session was so great, we laughed the whole time. Although, I was nearly late for a very absent-minded reason.

This morning as I was trying to get ready, our son was texting us with some issues he was having at work. My wife must have been on a conference call or something so she wasn't replying at all, so it was just me. And I started to realize if it went on much longer I was not going to be able to jump in the shower in time to make my appointment.

Why didn't I just say something? Well... that dawned on me when I was (on time) waiting outside her office. I realized that I'm so accustomed to him NOT knowing about my "secret" that I naturally never say anything about appointments if I don't absolutely have to.

A moment later he texted again while I was sitting there, and I replied that I was waiting to go in for a treatment so I'd be off the grid for 90 minutes but I wasn't ignoring him. 

Over dinner, my wife and I agreed the upside was, NOT that my memory is fading... but that our relationship is so unchanged that I forgot he knows sometimes. So that's good, I guess. Still... I definitely made my morning unnecessarily complicated and rushed!

And tomorrow's Botox is making me miss my cousin's funeral... but I did send a nice message to his sister with our regrets and explaining why we couldn't make it. She replied thanking me for letting her know.

It's my experience, with my mom and dad passing in the last five years, that there are absolutely some people you were aware of if they attended or did not... but then most others are kind of a blur. I'm kind of thinking we are on the cusp of aware/blur... but even so, I thought the message was a good idea.

One of my other sisters who is attending was grumbling at bit about the day tomorrow. For those who haven't attended an Italian funeral (and this side of the family is much more traditional than ours), it is ALL-DAY. I mean, the wake starts and 9 am, and I'll be shocked if they're home by 5 pm.

Even so, I asked if she'd rather be there or have 40 needles jammed in and around her eye, temple and the back of her neck.

So she is now fully on board with the All-day affair. 

Love,
Allie

So Botox was an interesting experience...

I was considering this morning if I would tell my doc and her assistant (it's always the two of them) that I was trans this time. Although it's in my file, I'm certain they are not aware.  Not that they really need to, but also, its highly likely that the next appointment in three months I'll have a head of hair, so it would be a good idea.

But I decided I can always just message through the portal, and I decided to kick it down the road.

I also decided to wear my "old" glasses, which I hardly do in public at all now.  But that wasn't related to not telling them. Having had electrolysis yesterday, I'm at my most unshaven, and have a visible goatee scruff... and I normally like to give my skin a full day before shaving.

So I just thought the feminine glasses and the facial hair was a bit more than I was comfortable with right now. Don't think I realized that until this morning, but that apparently is a line for me.

Anyway, the session was going great and I was giving them the update and they were thrilled with my progress. I hit 30 cluster-free days last Botox period (1/4 of the year). Still no migraine-free days (10 years and counting), but a couple of days where the start of the migraine was delayed, and THAT hadn't happened before. So it's all real progress.

The doc was thrilled. "I wish I could say it was just the Botox but you must be living right. You get credit too for whatever else you're doing!"

"It could be the hormones, I suppose," I said. "Oh, I just realized. Did I ever tell you guys that I'm transgender?"

And then I was off with the hormones story.

It was quick and to the point. They seemed neither stunned nor ... anything other than saying it must be part of what's helping and then we continued on like regular.

It was just TOO obvious and natural an opening not to discuss it. I didn't think about it, just responded to a question. And like when I was telling our son, and come to think of it like when I told my PC a year ago, I feel like if I had a blood pressure cuff on, I really don't think my readings would have budged a bit.

Don't know what that says, but hopefully it's a good thing.

Anyway, home now... with a face that's a bit bumpy, puffy and bloody.  But she does give me this head massage at the end which alternates vigorous and gentle, which has me feeling pretty good otherwise.

Now I await the "Botox flu"... which will pretty much knock me off my feet for 24-48 hours.

Love,
Allie


P.S. Oh, and my wife did not think this was as quite as hilarious as I did. But I share it for your judgment. When making my next appointment, the date they gave me is our wedding anniversary. I said that will be fine because "now I get let my wife know she doesn't need to stab me in the head that day, you guys will be doing it."

The ladies behind the desk thought it was quite funny.

Hi Allie,

That makes sense.  Being transgender but not out can certainly be a constant trigger for migraines.

Marion

Quote from: Maid Marion on March 14, 2024, 09:16:59 AMHi Allie,

That makes sense.  Being transgender but not out can certainly be a constant trigger for migraines.

Marion

Marion - you're quite right. Stress can, in some cases, be a migraine trigger. It's more normally associated with the whole fleet of stress headaches, but as a trigger, yup.

With mine being chronic I don't have triggers... they start at the same time every day, so it isn't related. But as my neuro says about all those thing — stress, weight, sleep, etc — improving all of them may not help, but they won't hurt!

Love,
Allie

Hi Allie

You mentioned the following in your post above:

Quote from: imallie on March 14, 2024, 08:43:50 AMAnyway, the session was going great and I was giving them the update and they were thrilled with my progress. I hit 30 cluster-free days last Botox period (1/4 of the year). Still no migraine-free days (10 years and counting), but a couple of days where the start of the migraine was delayed, and THAT hadn't happened before. So it's all real progress.

The doc was thrilled. "I wish I could say it was just the Botox but you must be living right. You get credit too for whatever else you're doing!"

"It could be the hormones, I suppose," I said. "Oh, I just realized. Did I ever tell you guys that I'm transgender?"

You say, "it could be the hormones", so the question remains, why?  I've noticed anecdotally that endocrinologists in the states tend to start of hormone therapy on a very low dose.

The question that just crossed my mind is do the 'physicians' maintain a post menopausal estrogen level, for 'us'?  I know the body needs hormones, regardless of what type it is given.

When I started I was given a high dose 2 x 2mg (tablet) twice a day, by my then treating doctor, when I saw my endocrinologist at the time, he just monitored my levels (I assume estrogen) and was happy with them.  I have always taken the same dosage ever since I first started, which has been 35 years.  My doctor who recently took my blood levels said, "your levels are fine", meaning they were 'average' compared to other women.

I'm not a doctor, so my thought is would a higher level of estrogen make a difference in the treatment of migraines?  You have mentioned that you have been having botox for a long time, but only 1 year for hormones.  Food for everyone's thoughts.

Take care and I wish with all my might that one day you will have a migraine free day.

and Hugs
Sarah B

@imallie
@Northern Star Girl

Quote from: Sarah B on March 14, 2024, 07:25:47 PMHi Allie

You mentioned the following in your post above:

You say, "it could be the hormones", so the question remains, why?  I've noticed anecdotally that endocrinologists in the states tend to start of hormone therapy on a very low dose.

The question that just crossed my mind is do the 'physicians' maintain a post menopausal estrogen level, for 'us'?  I know the body needs hormones, regardless of what type it is given.

When I started I was given a high dose 2 x 2mg (tablet) twice a day, by my then treating doctor, when I saw my endocrinologist at the time, he just monitored my levels (I assume estrogen) and was happy with them.  I have always taken the same dosage ever since I first started, which has been 35 years.  My doctor who recently took my blood levels said, "your levels are fine", meaning they were 'average' compared to other women.

I'm not a doctor, so my thought is would a higher level of estrogen make a difference in the treatment of migraines?  You have mentioned that you have been having botox for a long time, but only 1 year for hormones.  Food for everyone's thoughts.

Take care and I wish with all my might that one day you will have a migraine free day.

and Hugs
Sarah B

@imallie
@Northern Star Girl

Hi Sarah -

Well, the reason I heavily qualified my statement is... well, there are LOTS of reasons. 

Foremost, especially when it comes to my cluster headaches, it's such a rare condition that there simply isn't enough clinical research on the impact of ANYTHING. It's why, despite the efficacy of Botox on patients like me, insurance will not cover Botox treatments. There simply isn't enough to back it up. It's only by my neurologist framing my progress in terms of incremental improvement in migraine severity does each year get approved.

As for hormones, though, there is plenty of research that shows that Estrogen is, in fact, a "migraine multiplier". It's actually listed as known side-effect for hormone treatment, not just for trans patients, but menopausal women, or any women taking them.

My neurologist, however, still gave me 70/20/10 odds at the outset, even as he advised against proceeding with hormones.  70% it would worsen my issues, 20% it would not impact them at all,  and a small (10%) chance it would improve them.

That is why my endo and I decided to begin with microdosing, and were prepared at the first sign of negative impact to pull the plug. And when I started showing continued positive progress, we kept increasing.

But at the same time, Botox is a cumulative procedure. Each quarter's treatment stands on top of the previous quarter's, as it rewrites neurotransmissions of pain in the nerves. 

But also at the same time, my neurologist says that at some point in the near future I could hopefully age out of all of this.

So... that is a long way of saying, that is why we say we can't really know what is helping and how much. Each thing might be playing a part, one might be doing all the heavy lifting? Who knows.

I think, however, it is clear that, per my neurologist's percentage scale, I am safely in the non-70% pool. So whether it is helping or not hurting, no one can say. But at this point either one is just fine with me.

I know that's a long explanation, but I promise you, that's the short version. 

Love,
Allie

By the way Sarah, I should have put this big caveat on all of the above:

That explanation is the English major's version of science as I understand it from my neurologist who is an absolute saint for not (visibly) rolling his eyes with the number of times I will ask "what does this do?" And "how does this work?" ... so what I wrote above is the version I've parroted back to him where he's at least nodded in affirmation, shrugged his shoulders in a "let's move on that's close enough" way, or given me a very clear "yes... sure."

😂

QuoteBut also at the same time, my neurologist says that at some point in the near future I could hopefully age out of all of this.

Here's praying that Guanyin, Mother Nature, Eleos, the Biblical God, or Father time finally have mercy on you.

QuoteSo... that is a long way of saying, that is why we say we can't really know what is helping and how much. Each thing might be playing a part, one might be doing all the heavy lifting? Who knows.

There's still a lot of who knows in the modern medicine/human body relationship.

Quote from: Oldandcreaky on March 15, 2024, 07:16:12 AMHere's praying that Guanyin, Mother Nature, Eleos, the Biblical God, or Father time finally have mercy on you.

There's still a lot of who knows in the modern medicine/human body relationship.

Thanks - yeah all are welcome to the "get well club". We're a "big tent" kinda organization 😉

And medical research and science IS all about the unknown. And really none of it is ever really knowing, but just informed, reasoned speculation based on years and years of practical and theoretical research.

What makes my thing so wiggy is there just isn't that much "there there" yet. No one still knows or has any really accepted theory as to why and how cluster headaches begin. Who they strike and why? Or really how to treat them. It's a lot of throwing darts.

For example. I ran a student-athlete leadership seminar at the college.  We met four times a year, always in the evening. Had this woman from the NCAA in to lead the session that evening and I was sitting in the back when out of nowhere my world was set on fire.  I ran out of the room, which, by the way was right to a balcony overlooking the basketball court - two more steps and I wouldn't be here — completely blind and I have no idea what happened next.  I woke up about 30 minutes later, bathed in sweat against a wall, my nose running my left eye watering and my head pounding.
Since it was at night and we had the building to ourselves, no one saw me until I came to. So I somehow drove home and then luckily it started again just a few minutes later — and not when I was driving. 
Anyway it went like that for horrifying week and several doctors appointments, brain scans, etc, until I walked into this referral to my current neuros office and he looked at my temple at the way the blood vessels were enlarged and said "you are experiencing cluster headaches". Nothing was cured, but my world starting getting better that day.

Conversely, my wife's friend's husband? Healthy, I think he was younger than I was so mid 30's? - he was in a car accident and suffered a minor head injury. The next week he started with cluster headaches.

I mean I understand that sometimes I could be so busy that my work got crazy, but that leadership seminar was NOT a "car wreck". 😉. There's no discernable connection between his story and mine. And my neuro has told me other stories like that. It baffles them.
It's rare (thank God) and seemingly random. Someday you hope they'll unlock the causality and that will lead to more targeted treatments.

Hi Allie and Lori

Thank you for your replies and from this nerdy person, I will have to recognize the superior wisdom and knowledge that you posses in regards to migraines and hormones.

I did mention hormone issues in a message to Lori and I have not really had the chance to reply to her.  However, just like I have just mentioned above.  I will have to recognize the superior wisdom and knowledge that Lori posses in regards to hormones.

You are my sensei's, Imallie and Lori.

Love and Hugs to Both
Sarah B
PS  One caveat from me, there have been main stream scientists who have said one thing and have been totally proven wrong.  For example Barry J. Marshall and J. Robin Warren. for their discovery of "the bacterium Helicobacter pylori, which causes ulcers and not stress as the main stream scientists said so.

@imallie
@LoriDee