No, I’m just crazy.

It’s not just another phase of life. I am just crazy. I’m starting to believe it, anyway.

Depression is not something we keep in the closet anymore, nor are other mental health issues. We seek help. We talk to our friends. There are medications available to help stable us out if we need them.

Yeah….the medications. There are so many, and it’s so hard to find the right one (or combination of meds) that work for each person. In some cases, they work but they have horrible side effects, one wonders if they’re worth it. In other cases, they work for a while, then they stop working completely. Raising the dosage doesn’t help; they just never work again. I’m one of those lucky souls. I can’t tell you how many head meds I’ve been on that suddenly didn’t work anymore. It’s like I build up a resistance to the damn things!

The last two have been Citalopram (generic for Celexa) and Quetiapine (generic for Seroquel). Now, keep in mind, I’ve never been diagnosed as bipolar, schizophrenic, or with other disorders Seroquel addresses. I have chronic insomnia, horrible depression, and anxiety issues. This was to “stablize the mood”.

They both stopped working. At the same time. Lovely.

My head-up-her-a** doctor decided to keep me on Celexa while switching me to the extended release of Quetiapine instead. My thoughts? How the fuck is this going to be any different? Oh, if I only knew… I’ve had the worst reaction. Mania! RAGE!!!

Rage at the slightest goddamn thing! Disagreement with the husband?? Fuck. Him. I won’t talk to him about it like an adult – I can’t!!! I scream, I yell. Jeezus, I wanted to throw things last night!!! Doctor doesn’t return my call? Fuck. Him. I’m looking for a new one. I don’t care if I’ve been seeing that doc forever. I don’t care if that doc might have a valid reason. I didn’t get my callback!

This is not me!!!!!!

I officially stopped taking this gods forsaken med last night. I warned my husband. I can’t seem to get a callback from the head-up-her-a** doctor who prescribed them. Having all the “cold turkey withdrawal” symptoms anyway, so I may as well do it.

Epilepsy Monitoring Unit – Day 5

Still. No. Seizure.

So last night we did the sleep deprivation thing again (Wednesday, Day 4). I chose not to go to sleep at 3:00am, because I was still wide awake. Instead, I stayed up all night long. It’s now 4:15pm on Thursday. I’ve been awake for 31 hours 15 minutes, and I’m still going.

Last night/this morning, when it was dark outside, I watched strobe videos on YouTube. I re-watched Stranger Things Season 3 (for those who don’t watch, it has a photosensitive warning). The first time I’d seen season 3 I had to look away in all the “strobe” scenes. I felt like I missed half the season. Last night I got to see everything I missed.

As of this morning, I’m completely off my seizure control meds. Tonight I’ll have missed 2 doses. My husband came to see me this afternoon. He thinks I’m going to seize tonight. He says I’m showing some of the early warning signs that he’s learned to notice. Things like the look in my eyes or something about how my moods swing back and forth erratically. I hope he’s right, because I could have sworn I heard another person in my room while we were talking. Someone male, yawning very loudly. No one was there and he didn’t hear anything. This could be pre-seizure, or it could be some kind of hallucination because I’ve been up so long. I’m not sure how long you have to be awake for something like that to happen.

Epilepsy Monitoring Unit – Day 4

Still no seizure. You know, if I were at home doing all these things that normally trigger a seizure, I would have had one long before now.

The doctor says they’re seeing plenty of spike activity on the EEG, we’re just not getting a breakthrough seizure yet. Tonight we’re doing sleep deprivation again, and eliminating one of my seizure medications. The other one is still set to half dosage.

I’m starting to get cranky. This is the 4th day in the hospital. I want to be at home. I miss my family. I get visits but it isn’t the same. I miss hanging out with the dude at night, watching Daily Show and YouTube videos. I miss my husband, watching the ballgame with him, talking with him, cuddling with him…just being with him. I miss our cats and our dogs. I miss the feel of our house. I miss sitting in the den with the windows open, listening to it rain (it’s supposed to rain again this week).

Enough of that.

I’ve always done everything I could to avoid having a seizure, so this “trying” to have a seizure thing is strange to me. But I have this dark humor side that is getting used to it. It’s the part of me that says, “Well, if I have to do this, I may as well enjoy it.” So it’s time to watch all those movies, shows and videos that have seizure warnings. I told the neurologist this morning I’ll do anything I can to help. I really don’t want to be here this weekend.

I’ve never watched a strobe before. They’re actually kinda’ pretty. I wish I could enjoy them all the time.

Epilepsy Monitoring Unit – Day 2

They have their baseline EEG from day one. Now the fun begins.

Today I’ve been drinking tons of coffee. I’ve had six cups of hospital coffee. Now, I gotta’ tell you, I’m drinking the coffee the nurses drink. They drink some strong coffee. OMG, I haven’t had this much coffee in so long.

I’m trying to stay awake tonight. They’re dong sleep deprivation on me. I have to stay up until 3:00am, and they’re going to wake me up at 6:00am. This is terrible!!! No naps tomorrow, either, until the doctor ok’s it, so I’m living on coffee again tomorrow. Of course, they’re also skipping the sleeping pill tonight.

Today I met the head of neurology. Evidently, she makes it a point to visit all the patients in the Epilepsy Monitoring Unit. I was impressed. She was very knowledgeable and answered my questions about my testing schedule for the rest of the week. Memory test should be tomorrow, providing their department is available. She also correctly set my expectations about my stay here… It may be longer than 5 days, “depending on how you perform,” (direct quote). In other words, if I don’t have a seizure, I stay until I do. Joy….

Fingers crossed. Maybe with the caffeine intake and sleep deprivation I’ll have one and get it over with tomorrow.

Epilepsy Monitoring Unit – Day 1

The Back Story

I know this blog is called Menopause Express, and my intentions when I started it were to stay on topic, but you know what they say about the best of intentions and that road.

I was diagnosed with epilepsy at the age of 10, so I’ve been used to the seizures for a long time. I’ve always been lucky, though. I was considered well controlled. After the hormonal changes of my teen years I’d go about 5 years between seizures. But as I got older, 5 became 3, then 2….then months… This year, since January, I’ve had about 5-6 tonic clonic seizures (full convulsion). This includes the times I’d have 2 in one day. I’ve also had 4 complex partial seizures, which can develop into tonic clonic seizures, but they didn’t. On top of these, I’ve had a couple of simple partial seizures, where you just appear to “space out” a minute. I realize it happened, note it in my diary, and move along. Twelve, total, according to my neurologist, when I saw him in late June/early July. Roughly in a 6 month period.

I’ve tried countless medications. They either stop working, don’t work, or I have horrible reactions to them.

He says I have medicinally resistant epilepsy, which sounds a bit frightening to me. But that’s why I’m here today.

Day 1

We drove in this morning to check-in at the gawdawful hour they wanted me to be here. We decided to leave early to allow ourselves time to get lost, as this was right in the middle of the “medical district” in Houston, where tons of hospitals are, and this particular hospital is HUGE!! While I’m not an early riser, I must say, sunrise over downtown was beautiful. Unfortunately, I was not awake enough to get a picture.

Check-in was…confusing. I’ve been here all day and no one has taken my co-pay yet. But, I seriously doubt I’ll get out of this for free.

On day 1, they do an MRI first. Being the claustrophobe I am, I took my Clonazepam and went with the nice gentleman. We got in there and he covered me with warm blankets, and did something new: he put a nice warm blanket around my head so I could cover part of my face and hide!!!! Oh, this helped so much!!! I went right to sleep and didn’t wake up until it was over.

Once back in my room, it was time to hook me up to all the wires. I feel like I could communicate with satellites now.

Yeah.. And this is how I’ll be for the next few days. Hopefully, I’ll be able to do daily updates. They actually *want* me to have a seizure in here, so, I don’t know how I’ll feel after that. Why, you ask? Why do they want me to have yet another one? Because they’re trying to pinpoint the area of the brain they come from. I don’t really like the idea of having yet another seizure, but if it helps in the long run, and if I don’t go into one of those seizures you can’t come out of, well, I’m in the right place.

Ok, fine. I’m terrified. But they’re good at explaining everything, right down to the why’s, and easing concerns as much as possible.

More tomorrow…

At Your Age

Gah… Seriously, people, I don’t feel that old. Well, except for right now, but that’s another story completely. I hear, “At your age,” and I think of my Gran when she was in her 80’s. I’m not even close.

But I am post-menopausal and there are things I need to do that I don’t; for example, bone density tests. And right now I’m dealing with that little issue.

A little back history (ahahahaha!! Unintended pun!!!).

A little over a month ago I decided to get a new pair of sneakers. This lovely pair of Chuck Taylors caught my eye. I haven’t worn that brand in a long time. These weren’t your standard canvas CTs, noooo…. They were black leather and canvas.

Chuck Taylors
Classic Chuck Taylors. I couldn’t find an image of the shoes I bought, but you get the idea. 🙂

 

I had to have them.

About a day or two later we had a very foggy morning, leaving our concrete porch extremely wet. I’d just made a run to … somewhere… honestly, I don’t remember and that part of the story is irrelevant anyway. On my way in my feet, in these new Chuck Taylors, decided it would be a good time to remind me that this particular brand of shoes have crap for traction on slick surfaces. My feet went right out from under me and I landed flat on my tuchus.

Gravity Lessons

 

I felt everything in my spine compress and I knew I’d broken my tailbone. Eh, what can be done about a broken tailbone? I figured I’d just jammed everything else together and I’d be sore for a couple of weeks.

Nope.

A month later, not only had things not improved, they were actually getting worse. I had to go to an orthopedist. He did x-rays and an MRI, and I found out I had compression fractures in 3 of my vertebrae.

WHAT??? But all I did was fall on my a**! This didn’t used to happen!!

getting old

Oh, and if this wasn’t alarming, evidently, this wasn’t the first time I’d done something like this. I also have older compression fractures that have healed.

So why am I telling you all this?

Get your bone density tests. It doesn’t matter how old you are. If you went into early menopause, get your bone density tests done anyway. You don’t want to end up in a back brace looking that’s more like a medical corset because of your fashion choice on a foggy morning.

 

 

The Abyss

abyss-of-depression

You’re all used to my periodic absences around here. I don’t post on a daily basis. I write when I have a rant, or when I feel something needs awareness. Sometimes I go on hiatus when I have nothing good to say. It’s at these times I find myself in The Abyss.

Today, my topic is depression. Continue reading “The Abyss”

The Ongoing Saga for Healthcare Coverage

I have been trying to compose a blog post on this topic since November 19. This is currently my 5th draft. I’m hoping to write a composed entry, rather than an unbiased ranting of a raving lunatic, because really, I’m so frustrated I just want to throw things.

I have epilepsy, which left me no choice for insurance but the Federal PCIP program when my COBRA ran out. When I had to wait 6 months without insurance to apply for PCIP, we felt that financial pain on our budget just on my meds alone, which cost an average of $1000/month. I have not calculated or included the cost of my husband’s medications at this point.

Now, we’re facing the same situation again. PCIP is going away at the end of the year. If I’m unable to find affordable coverage by December 15, I will not have insurance at all on January 1, 2014, and I’ll get to pay a penalty for that privilege. Continue reading “The Ongoing Saga for Healthcare Coverage”

My Healthcare.gov Experience This Morning

A little history…

After multiple attempts last week, I successfully created an account on healthcare.gov. I had to wake up at 5:15am in order to do so. The process still took me two hours, and at the end of those two hours, when I hit “Submit”, I waited and the screen flickered, then I was left on the same page as though nothing happened. I was never taken to a page confirming the process was complete.

I tried about 6 or 7 times. I even tried logging out and logging back in. Finally, I tried their chat support. They have this handy link at the lower right corner of the page that says, “Live Chat”. I figured their phone lines would be swamped, so I went that route. There was no disclaimer on what their chat did or did not support. Usually, when there is a chat link on such a page, it is level one support and they can help you with at least part of your problem. They can, at least, access your account.

Nope.

The agent informed me they could not access any account information or help with the application process on chat support. Although I just needed to know if my application completed, the agent could not even answer that question. I had to call phone support.

The agent on phone support informed was friendly enough and asked me if I had an account number. I said, “No. I have an application number. I’m in the very last phase of the application process and that’s where things timed out. I clicked submit but I’m not sure if it worked. I just need to know.” I was told that without an account number she could not pull up my in-process application. She could not pull it up with the application number I had, nor could she pull it up with any of my personal information. My only option was to go through the application all over again on the phone (the same application I just spent two-hours completing and had no desire to go through again). If she took me through it by phone it would take 2-6 weeks for a confirmation; whereas, if I completed it online I got an immediate response.

WTF? Why the difference? Why couldn’t she get the same immediate confirmation? But that’s another rant for another day.

I didn’t want to dig up all the information again, so I logged out and logged in again so I could read through the in-process application and give her the responses she needed. Lo and behold! I received a new message! I had some file I had to download, indicating I’d been approved! I read the message to her and she confirmed this meant I’d receive an email shortly with my coverage options.

I never received it.

Fast forward to today…

I tried logging back in this morning. My username and password did not work. I thought, “Perhaps I forgot one or the other.” So I clicked on the link that said “Forgot Username”. I populated my name and my email address associated with my account. I did not receive an email. I checked my spam folder to be sure.

I contacted their chat support again. Surely, they can at least assist in resetting usernames and passwords.

Nope.

Now, before I go on, here’s a screenshot of the chat window you see while you’re chatting with the agent. Note the misleading phrase at the top, “Chat with someone who can help”.

Chat Helpless Desk

Alas, I had no method of emailing the transcript from the chat window. I had to copy/paste. I wish I had something more … credible. Regardless, here is the text from the chat, because they have no method of sending the transcript:

[06:49:51 am]: Thanks for contacting Health Insurance Marketplace Live Chat. Please wait while we connect you to someone who can help.
[06:49:55 am]:  Please be patient while we’re helping other people.
[06:50:29 am]:  Please be patient while we’re helping other people.
[06:50:59 am]:  Please be patient while we’re helping other people.
[06:51:05 am]: Welcome! You’re now connected to Health Insurance Marketplace Live Chat.

Thanks for contacting us. My name is Ada. To protect your privacy, please don’t provide any personal information, like Social Security Number, or any other sensitive medical or personal information.

[06:51:44 am]: (me)
Hello Ada. I’m trying to log back into the website but it isn’t accepting my username or password (I’m not sure which is incorrect).

[06:52:23 am]: (me)
I may have forgotten my username. I’ve been waiting for the email but nothing is coming through. I *know* I’m using the correct email address. Is this something you can help me with?

[06:54:25 am]: Ada
  have you attempted to reset your username and password? If you need to reset your username or password, please use the “Forgot your username?” or “Forgot your password” links on the account login page.

[06:54:45 am]: (me)
Did you not read the description of my problem?

[06:55:03 am]: (me)
I tried that. I haven’t received the subsequent email from healthcare.gov

[06:55:31 am]: (me)
and I KNOW I’m using the correct email address for you to send me the information.

[06:56:09 am]: Ada
Thanks for your interest in the Health Insurance Marketplace. We have a lot of visitors trying to use our website right now. This is causing some glitches for some people trying to create accounts or log in. Keep trying, and thanks for your patience. You might have better success during off-peak hours, like later at night or early in the morning. We’ll continue working to improve the site so you can get covered!

[06:56:42 am]: (me)
Ok. So basically the chat agents are only good for sending scripted responses and not for actual assistance. Correct?

[06:57:01 am]: (me)
I’ll stop bothering you.

[06:57:16 am]: (me)
You should take this link off of your website.

[06:58:35 am]: (me)
the chat window even says “Chat with someone who can help”

[06:58:46 am]: (me)
You aren’t helping me.

[07:00:28 am]: Ada
I apologize. We are available to help you 24 hours a day, 7 days a week. You can reach us toll free at 1-800-318-2596.

[07:00:50 am]: (me)
Yeah… because your chat support is useless.

[07:01:09 am]: (me)
I want this forwarded to a manager for a callback.

[07:01:21 am]: (me)
This is not the first time I’ve contacted chat support for assistance.

[07:02:58 am]: Ada
I apologize for the inconvenience.Is there anything else I can assist you with?

[07:03:22 am]: (me)
I want a manager to call me back regarding the problems I’ve had with chat support, overall.

[07:03:49 am]: (me)
Every time I’ve tried to get help through chat all I get are “scripted responses” followed by “call tech support”.

[07:04:08 am]: (me)
If I wanted to call and wait on hold, I would have done that in the first place.

[07:04:26 am]: (me)
If you have chat support, use it. If you don’t have chat support, don’t put the link up on your website.

[07:05:16 am]: Ada
 You can reach us toll free at 1-800-318-2596.

[07:06:27 am]: (me)
… wow. When I was over an outsourcing call center, making sure their chat support was functioning properly and our customers were satisfied, THIS kind of thing would never happen.

[07:06:47 am]: (me)
Live chat… more like warm bodies in a chair.

[07:07:25 am]: (me)
Can you send me a transcript of this chat so I can forward it to a manager I reach by phone?

[07:09:35 am]: Ada
I apologize, but we do not have that ability.

[07:09:50 am]: (me)
Of course.

[07:10:50 am]: Ada
I apologize, but if there is nothing else I can help you with I am going to have to disconnect from this chat.

[07:11:05 am]: (me)
Unless you can give me a survey link, I think we’re done here.

[07:11:18 am]: Ada
Thank you for contacting Health Insurance Marketplace Live Chat.  We are here to help you 24 hours a day, 7 days a week.

And she ends the chat with the sentence, “We are here to help you 24 hours a day, 7 days a week.” Just how are they there to help?? As far as I can tell, they’re serving as a bottleneck for phone support. Can you imagine how many calls they’d be getting if the chat link wasn’t on the page?

*(on another note – as I went through the post to remove my name, because I never use real names on my blog, I just noticed.. Ada never used my name on the chat. Just where are they getting these agents? Everyone knows in any form of customer service, you always use the customer’s name; especially if the customer is irate.)

Enough!

Day three (3) of our government shutdown, with no compromise in sight, no signs of either party giving in. Social media outlets are on fire with posts and comments. People expressing their opinions, their frustration and their anger. Anger at the politicians and anger at the general public on the other side of the political fence.

We live in a divided nation and we’ve been bickering back and forth for three days straight now. People — we’re angry with each other when we need to be angry with the politicians who aren’t even feeling the effects of this shutdown.

Here. Look at the cute kitty for a moment and calm down.

MissyIsTiredOfPolitics

I’m not saying we should ignore current events. We need to be aware and fully informed on both sides of the story. I’m not saying we should close our eyes like children and pretend nothing is going on, thinking maybe this will all just go away. It won’t. These issues affect you and me, regardless of what side of the political fence we stand.

I am saying we need to take a moment and breathe. Many people have been wound up over the past three days and tensions are high.

Now go hug someone.