I’m such a mess today. This is why:

1) Mr. Topamax is causing me to have very vivid dreams. This isn’t a bad thing, per say, cause they aren’t nightmares. Let’s just say I woke up in a charged mood which doesn’t mix real well with that zombie stupor the Tegretol puts me in when I first wake up. So there I am - the libido of a teenage boy yet with the stamina of an 80 year old geriatric patient who is hardly coherent. And when the fog clears, I’m just about to go mad. I know - this is way TMI - but Topamax has a s/e of Decreaesed Libido. Yeah, right. I don’t think so, people.

2) I’m babysitting my cousin. She’s 4 1/2 and mouthy. She’s playing my kids, and keeping them busy, so I don’t mind. But…. they are so stinking loud!!!! Kids really annoy me lately. This is one reason why I’m enjoying my doctor-enforced-break from work. My kids, I can handle them. When it’s just us at home, the house is calm. They are in their room or on their computers and it’s really quiet. But add a third munchin and it’s like Chuckie Cheeses in here! Not a good mix when Endochick is slipping in and out of lala land with these seizure meds.

3) I got my call from the Dizzy Clinic and will be going for their battery of tests on July 9th. Fun. How much more work can I miss, really? Can I draw unemployment for this, or only when you’re fired? I’ve never done that, so not sure. But these tests don’t sound like fun! They’ll test my hearing. She also mentioned something about pouring warm water and wax into my ear - EEEEEK!! I HATE HAVING THINGS PUT AND POURED INTO MY EAR!!!!!!! She mentioned a test about putting headphones on me and them video taping my eye movements or something like that. It’s hard to talk to someone when you have a 2 year old crawling all over your lap and you’re trying to remember how to say Trigeminal Neuralgia but can’t say it right. I sounded like a moron.

OK well, enough ranting, I have to start dinner. Where did the day go? I applied for some freelance writing work. I hope to get some bites. Being out of work is draining the pocket book! It sucks. At this point, I’ll write just about anything.

I saw the Neuro today.

The excrutiangly annoying facial numbness/tingling pain/muscle spasming into my neck, ear, and arm is Tigreminal Neuralgia from that ear infection I had a couple weeks back.

And while we are on the subject of that ear infection… he thinks that’s what causing the problem with the vertigo and the near syncopal episodes! First since I haven’t smelled that strange smoke smell since I completed the antiobiotics for my ear infection, he positive that was my olfactory nerve picking up the infection in my sinuses. I know, omg! What??!?! I’m just like -thank goodness I’m not having seizures! I could’ve done a dance in his office. lol

So he’s sending me to the Dizziness Clinic - wow, I love the technical name - for a complete work-up. He’s concerned about permanent hearing loss in my right ear, or permanent damage to my inner ear causing a problem to my balance. And this maybe having an effect on my Complicated Basilar Artery Migraines. We are not sure and need to see what the work up with the Dizzy Peeps say first. Lovely. I can’t wait.

Until then, I am out of work still - in the day care, at least. I’m gonna look for some freelance writing work to keep me from going insane, and to help pay some of these doctor bills. Wish me luck.

Also, anyone know a good lawyer because I may be suing a GP. More on this later - it has to do with the ear infection and vertigo. Juicy stuff, people. Juicy. lol

I’m not doing good today…

Man, that is becoming an all too commonly heard saying from my mouth and I’m sick of it!

I went to visit some people today, and during the visit I was stricken with an episode of intense vertigo. I was helped to the couch before got really bad and an ice pack was put on my neck. The right side of my face started going numb and tingling. I laid there still and quiet. I remained calm because, well, I’m getting used to these by now. It’s nothing new, yet still not fun.

Eventually it passed and I was able to get up and run to the bathroom - my usual signal that the worst is over. But this lingering vague vertigo still won’t let up. It hits me in waves. My ear feels clogged up again. And now my face (on the right side), ear, neck, shoulder, and arm are killing me. The muscle are spasming. I must stop typing. Is it Friday yet?

Rachel left a comment yesterday:

Hey, I came across your blog while doing some endo research. I have endo also, was in horrible horrible pain (all the time, not only during periods), had 2 laparoscopies to burn off the endo, had it on my bladder, bowel, pelvic wall, and still had terrible pain so I was about to start Lupron. But after reading more about Lupron I really didn’t like the sound of the possible side effects, and it is not a long term way to manage the endo (sometimes only works for several months). I came across studies about endo and nutrition though, that discussed the relationship particularly between endo and wheat. Out of all the (MANY) doctors I went to, none of them had mentioned diet. Some women are also affected by dairy. I took myself off of dairy and wheat in February, instead of starting the Lupron shots. It took about 3 weeks to get out of my system but after that, as long as I don’t eat wheat/dairy (wheat is the worst), the pain has been very minimal. It’s actually been amazing. If you haven’t looked into the nutritional side yet, order Dian Shepperson Mills’ book “Endometriosis: A Key to Healing and Fertility through Nutrition.” Apparently the diet helps about 80% of women.

I found this comment so interesting to base a post on why? Well, because of the dairy comment, that’s why. For a while now I have found that I can no longer enjoy Macaroni N’ Cheese - the kind’s like Kraft that use the powdered cheeses. In fact I can’t tolerate anything that uses powdered cheese anymore. I have always been lactose intolerant, so I have to watch my dairy intake to begin with. But only a few bites of powered cheese product noodles and I could throw up. It’s so odd. I haven’t had an issue with wheat - other than some gass. hmmm…. perhaps I should detox both and go a few weeks and see?

I failed my renewal work physical…

I was put off of work until my neurologist can determine the cause of my near syncope episodes.

My GP actual did something right for a change and was able to get my neuro appointment moved from July 18th to June 27th - next week! Thank goodness.

Hopefully I won’t be out of work too long.

 

“Just like you said it would be
Life goes easy on me
Most of the time…”

I wish life would “go easy on me” at least once in while. It surely hasn’t been in the case these past two days, that is for sure.

Yesterday, while on the playground at work, I was overcome with dizziness. I tried my techniques: sitting with my head between my knees, gentle and deep breathing. But nothing worked, and eventually I found myself near syncope. I had one of my assistants run and get the boss who took me inside, which wasn’t an easy feet since I couldn’t even open my eyes lest I get so dizzy I throw up. Talk about a long and trusting walk. But I trusted her - she’s my sister-in-law. And I sat in the nice air conditioned office with a giant bag of ice on my neck for like 15 minutes and it should’ve helped! Still I had like 2 more episodes and a near white out! I couldn’t figure it out! I was just SITTING THERE! She eventually convinced I was going home and called for my father to pick me and my kids up. It took him and my grandmother to carry me to car. When my husband got home shortly after that, and thankfully the dizzyness had pretty much subsided - but my earache had come back in full force - I insisted on going to walk-in-clinic.

I ended up with an ear infection and a sinus infection.  The nice doctor, to whom I’m switching my care to the second I get a chance, was very concerned that my primary doctors hadn’t done a scrap of bloodwork concerning the near syncope and syncope episodes I’ve been having. I told her about my afternoon and she told me my ear and sinus infection is aggrivating the underlining conditiong, whatever that may be, that’s causing those episode- especially if it’s neruologically based. So if I want any chance of normalcy until my July 18th appointment I need to get those infections cleared up quickly, and she gave me the beloved Z-pack. Then she ordered some blood work forr me to come back this morning to have done. There were 3 large vials, 1 normal tube, and then 1 very skinny and long tube. Not sure what all she was testing. I know one was iron, inflammation (cause I’m having back neck pain for over a week), and one is a basic panel. Not sure what else, though. Should’ve written them down.

I’m supposed to go for my work physical tomorrow, so I’m hoping some of that blood work is in and I can get my incompetent PA’s opinion on it. I’m also emailing my insurance today on what’s involved in switching doctors. And I have a film research paper to finish and a math assignment to finish - that will finish all but one class for this semester. Man, my stress level should be reducing if it weren’t for my health status.

And, I know I posted about my endo taking a break. Well, apparently Endo is jealous and feels it needs to kind of linger - not really make a full-on presence, just sit in my pelvis and let me know it’s there, aching like, dully off and on. Like at 2 am. And then at 4:40. And again at 6:15. And get me up throughout the night for bathroom visits. Yeah, cause it’s a very jealous disease, isn’t girls? It likes to hog the spotlight.

Do you notice the various misspelled words and errors? Yeah, just a lovely side effect of Topamax. Or it’s Vista being a monkey turd messing with me (Vista and laptops, apparently don’t like each other or something). It makes my cursor fly everywhere if I don’t turn off the keypad while I’m typing, which I don’t always do. So, sometimes my words are misspelled or just missing. And I never reread things before posting them. I’m awful like that. Or lazy. Ok - back to homework.

I’ve noticed that recent post have strayed from the topic of this blog. But this is a health blog. It will focus, primarily, on my over all health not just endometriosis. But endo is the big picture. Is it not? Like I call it, endo is just one piece is the giant puzzle that is my whacked out health puzzle.

But I want to briefly tackly why I haven’t had the need to write so much about my endometriosis right now. As with all chronic conditions, it waxes and wanes. Endometriosis goes through moments where it’s quiet as a mouse, lurring it’s sufferer into a false sense of securty. You may even begin to believe it’s possibly disappeared from your uterus, ovaries, fallopian tubes, and whatever other odd organ it’s attached it’s amebic self to. But then one day, out of the blue - and usually when you least need it to - Endo walks up to you door at 3 am banging on it and yelling drunk obsurdities. Endo becomes that black sheep family members no one wants to admit they know, but who shows up at family functions anyway. Endo becomes that annoying boyfriend you dumped but who insists on coming ’round when he’s been drinking all night and needs a couch to sleep on. That’s how endo behaves. And right now my endometriosis is being controlled with the Mirena and the Endofemm, when needed. And my other health issues - which seem to be much scarier, are taking precedence. So I apologize if you come to blog in search of endometriosis information and find other topics that leave you confused. It’s just I write what’s relevant. And right now this syncope-smelling smoke-migraine drama is taking precedence over endometriosis. Sorry.

Just thought I would blog a quick update before tackling my assignment of the day, which I think will be Creative Nonfiction. I only have two left in that class. I finished Fiction the other day, and boy did that feel good. It’s nice to see the end of one of these tunnels I’m going down. lol

OK UPDATE:

Tuesday - I believe I blogged already about my horrible day of syncope and near syncope experiences and the moron doctor. After running the EKG and reviewing the holter moniter he concludes that it’s not my heart but my brain doing this - more specifically likely dysautonomia or seizures or something to that affect. In all honesty, I think this case is so out of his ballpark it scares the crap out of him and he was just trying to get me out of his office.

Wednesday - I got to work because he never said I couldn’t. Yeah, people object when I get there. “You shouldn’t be driving around until you know if you’re not going to black out!” Well, duh, but what choice do I have? Now really? I know for a fact they won’t call in a sub last minute. They just won’t. But all is well, for the most part. I do have a tiny moment while sitting on the gym floor. My heart begins to race and so I excuse myself to the bathroom and get drink of ice water from the fountain. I sit down and take some deep breath and just close my eyes. It’s very cold in the hall way and thankfully, it passes quickly. I still feel a little strange, but never get worse. Later that night I’m sitting on the couch watching Dan in Real Life - a funny, lighthearted romantic comedy movie. The kids are over to their aunts. The house is quiet. My husbands on the computer. And I’m watching the movie, enjoying it and relaxing when all of a sudden my heart starts racing very fast, and I feel like I’m being pulled down. It takes about ten minutes to pass and I feel like I could literally white out twice during the whole episode but don’t. My husband makes me finish the movie from our bed, since lying down seems to be the only thing that helps.

Thursday - A few episodes where my heart started racing or I felt a little light headed but that was it.

My husband e-mailed me yesterday and asked me if I was having a good day. I replied to him: “Yes. I haven’t passed out!” He replies that normally someone wouldn’t answer that question like that, but seeing as it’s coming from me, that’s a very appropriate answer. Given the week I’ve had, if I can say I haven’t passed out, then that is good.

 

What started out as a pretty good day turned really, really bad, really, really quick. I had just watched The Bachelorette episode I missed last night and I thought it was time I did some homework. So I got to work on my assignment and was highlighting away. There I am tapping away at my keyboard about 30 minutes into the assignment - and I must stress that I felt NO stress, pressure, anxiety or anything of that nature of this assignment or about anything while doing this assignment - when all of a sudden my heart start racing. I’m just sitting there, mind you. With a stinking highlighter in my hand. I try to ignore it. I take some deep breaths and focus on the writing. But then I notice it’s harder to breath, then it’s getting harder to see because the room is spinning. I grab my cell and rush into the bedroom and crouch over my bed as I frantically hold down the speed dial for my grandma. Thankfully she lives next door and was home. I yelled “GET OVER HERE” and then hung up before I nearly lost my breath. I couldn’t have said anymore, really. I was panting. She forced me outside thinking I was hyperventilating. About ten minutes into the “attack” or “spell,” it began easing up. But this time, unlike last time, I didn’t feel so relieved. I was fed up. I haven’t smelled that smoke smell in over a week, and even though I had a migraine this weekend, I had niavely put this behind me thinking perhaps that it had been something that had occured in passing and wouldn’t happen again. And if, in the future it did, I would deal with it then. But the future didn’t mean so soon, because I really hate that feeling of not having control of my own conciousness.

I made my grandmother drive me to my doctor’s office. I didn’t even call for an appointment. I was set on walking in there and demanding on seeing him. He was going to fix this, I kept telling her. But I made it to the receptionist’s desk, and that was about it, really. I had about two sentences out when all I could manage to say was “I can’t stand…” and I dropped to the floor in a puddle of tears. I felt like I was one of those rides where the elevator drops you. They put me in a wheelchair and took me back - no questions asked. But what scared me so much about that moment was the last time this happened I was able to drive myself to the doctors, drive myself to another doctors to be fitted for a holter monitor, drive to Walgreens to fill a prescription, and then drive home and care for two kids. This time, I couldn’t even stand on my own two legs. The whole time I’m there I’m doubting myself, I’m thinking maybe I should’ve went to the ER. And I think now that I should’ve because Dr. dumbo couldn’t help me in the end. They did do an ekg and finally concurred with me that it is not my heart. He does think it sounds like dysautonomia. They tried to rush me into my neurologist but the guy’s only in office on Fridays. Understandably he’s a bit booked. He’s in sleep lab the rest of the week - when he’s not teaching. I always end up with the teaching docs - and I worry that i’m on their whiteboards on some morning lecture. Case Study: Female - 28 - Syncope - smells smoke - is this for real? But I would gladly be the morning lecture if it’s means the next person doesn’t have to experience the incompetince I’ve experience thus far.

I see Dr. Neuro for my pre-scheduled “Let’s see how Topamax is doing” appointment on July 18th. He’s in for one heck of a ride when he enters that exam room. If I make it that long. Next time this happens… I don’t know. I’m just worried that if it happens at work like it did this morning, they’ll have no choice but to call 911.