It’s 10:17 pm. I should be snuggled next to my hubby, in bed. Sleeping. But I’m not! I’m blogging from my laptop, crouched in the bathroom in agony. I’m a mess. My stomach is in knots. I’m having hot flashes. My pelvis feels like the jaws of life are ripping into it. And I can’t take anything cause I took my demopressin at 9 and can’t DRINK ANYTHING FOR 8 HOURS. That’s right if I can’t drink anything that means no water for pain meds. I’m screwed!!

And I’m now paying 200 bucks for an ER copay for a pain shot and doctors talking smack behind my back (and I know they will be cause I read ER doc blogs so I know the crap they say about their patients). I NEVER go there for migraines - I know better. I’ve read some interesting post from many ER docs’ blogs about migraine “drug seekers.” Although, I’m sure they don’t get too many stroke-like migrainers. They would probably take me seriously.

Oh, this is awful! I need my heating pad! I need my husband, but he’s snoring in the other room.

Just when I think I’m going to be ok… Just when I think I can go back to bed… My stomach ties itself in knots again! I don’t know why!!! It’s evil!!!

This isn’t fair!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

What did we ever do to deserve this? Did we ask for this crap to grow in our pelvis.. our abdomens? NO!

Oh, why!

After reading this: Mass. Officials investigate possible Mad Cow in human, I’ve decided that I’m going totally no meat.

I swore off red meat in High School and did this for a couple years untile a doctor forced me to eat red meat at least once a month for my anemia. Then when I moved to the Dairy Belt (what I call the Midwest), meat became like a staple. Up until recently you wouldn’t see many vegan or even vegetarian dishes in restuarant menus where I live. And even in my small neck of the woods the best you’ll get is a kindly point the veggie side dishes, but in the larger cities - only a stones through away (and where we go out to eat most of the time anyway) - you will not only find main dishes and side dishes catering to the non-meat eating crowd, but restaurants that cater ownly to non-meaties. Unfortunately, my hubby is carnivore and will never change. I’ve tried to get him to eat some more variety of veggies other than the french fry and the mashed potato, but unless I can hide it in spaghetti (via the hamburger), it’s not going to happen. I do have him eating chicken nearly every night of the week, which I must say is a major improvement. And we tried turkey burgers. He loved them. I put garlic and onions and spices and doctored those suckers up, but still I couldn’t stand them. I’m just not a fan of the ground up texture, and he is. He won’t eat steak, but if I ground it up and put it on a bun - bam - instant hit.

But I have to find alternative to ground hamburger in this house. An article I read this morning, because I like to research things further (especially when it’s on a blog), stated that ground hamburger can contain spinal cord and brain tissue. This is why hamburger is the worst part of the cow to eat for Mad Cow contamination. I’m sure a respectable butcher isn’t doing this with their meet. And I always purchase my meat from a respectable butcher and I buy the ground silrion, even though it’s the most expensive, because it’s 99% fat free. I like not seeing a pool of grease when I fry the mess up. But my dad buys the store brand and he gets the cheapest, which is mostly fat and grissle. And little hard bits - gotta wonder now how much of those hard bits are spinal cord. YICK!

In the end, I would rather pop and iron pill and eat some kelp and green veggies to get my iron. I had a nurse tell me once that if you look at the intestines of a carnivorous animal they are small, this is because the meat is killed, processed in the stomach and passed very quickly so the fat is used for the optimal usage the animal needs. But if you look at the intestines of herbivorous animals, they are long - like humans. Because it takes longer for the body to absorb the nutrients from plants, and thus the digestive process should be slower. Humans really shouldn’t be meat eaters.

I can honestly say that I felt healthier when I didn’t eat red meat. I only ate chicken sparingly. I ate veggies and fruit in their natural state, when I could. I went through bags of salad mix, apples, you name it and I ate it. And when they told me I had to start eating meat again I did very, very reluctantly and covered everything in A1 sauce. I didn’t like the taste of it at first.

I know I have to take baby steps in this process - it’s easier that way and so my family won’t kill me. My daughter will enjoy the ride cause she is like me, a veggie and fruit lover. My son, just like his dad, and will probably remain so. I’ll just have to cook different meals.

The goal is being healthier. And not taking stupid risks - like Mad Cow disease - for something dumb like red meat.

I’m really tender today. I was tender last night, but it’s worse this mornining. Again, not bad. Not enough that I’m gonna justify lying around with a heating pad and tylenol, but if it gets worse I may just do that.

I’ve noticed Endometriosis pain seems to occur in cycles. It will hide away for awhile, be quiet. You almost don’t notice it’s there, or even forget that you have it then. Then one day your doing something innocent like bending over, or doing dishes, or who knows, and you’re reminded that, yes, you do have endometriosis. You get that familiar cramp, or pull, or sting. For me it’s that dull tugging sensation because of the adhesions. And then some cramping.

I would like a hormone panel done just to see where I’m standing now. I’m on so many things right now that can screw with them, because I’ve been there before. It would be nice to know my levels. And I haven’t had them done since, well, I was pregnant. I think. I know the endocrinologist ran many hormone panels but he focuses on thryoid and pituitary gland hormones. And I’m focusing more on the wider picture. I wonder if I can just call in and have then do that? My doctor so retarded he would need me to come in and explain to him why I, as a woman, would want a hormone panel ran.

Well, I really need to write something other than a blog and tweets today. I’m also trying to figure out how to add my Twitter feed to my WordPress page. I’ve found several tutorials explaining how to do this is RSS and so forth, problems is I have no clue what they are talking about. I even went in and added the RSS to my page but it’s not showing up anywhere when I view my page. And I have no clue how to edit CSS, or whatever that mess is. I used to build web pages in simple html, back in the early days of web development. I am so out of the loop now it’s sad. lol. I’m still searching for an easy way to get that feed on this page. If anyone can give me a hint, please comment. Thanks.

OK now I’m really going to go write.

The other day we were microwaving something and the microwave started sparking and spazzing inside like someone had set off firecrackers. Now this isn’t the first time this had happened, and we use the microwave sparingly, but this time is started smelling like smoke! So we immediately stopped the microwave and unplugged it cause I wasn’t in the mood for a full blown fire. But - this whole thing resulted in me finally getting a new microwave! Yay!

And this means I can safely use my endofemm again!!! I’ve been a little tender lately - probably because my hormones are off the charts! And everyone knows endo feeds on the hormones! At least I’ve noticed that when my hormones are bouncing off the wall or in an incline, my endo seems to act up or give me issues. It’s not bad right now, just uncomfortable. Like a nagging in my pelvis. I always wonder around this time if this is when I would be having my period if I didn’t have the Mirena in me, since the Mirena doesn’t stop ovulation just build up of endometrium. So I guess the whole hormonal process of getting your period would still be there? And now that my thyroid is at optimal level it would explain why my hormones are back to their old selves - which also explains why my endo is saying hello again. Just as long as it keeps peeping over the fence like a good neighbor and doesn’t coming blazing over for coffee and settles in like a parasite, we should be ok. Cause the hysterectomy is not on the table right now with all the mess going on. And once I do get back to work, when ever that will be, I’ll need to work for some time before taking 6 wks off to recoup. And I like the hormones, just not the endo that lives with them.

I’ve jumped ship - joined Twitter! You can now keep track of all my insane play-by-play’s. For those times I feel like blogging but it’s just not enough to blog, I can Twitter! Yay! So, if you’re already on - leave me your name and we can add each other. If not, then join and follow me and I’ll follow you. I’m Endochick, of course!

See you in Cyberspace.

I wasn’t supposed to see my neurologist until August 29th, hence the title of this post, but seeing as they would have my report from the Dizzy Clinic in hand today, I figured I would give them a call. The Dizzy Clinic called me yesterday and said the vertigo, etc., wasn’t from my ears but I do have a slight hearing loss in my right ear that isn’t too concerning to them, which I already knew. Well, I thought, they think this is a manifestation of my complicated migraines so why can’t neuro man increase my meds and get my butt back to work? Good thought, right? Yeah.

So I call Dr. Neuro’s office and explain this lengthy plan to the receptionist, whom I’m wanting to relay it to doc or nurse. She just decides to fit me in sooner and see if he’ll clear me for work. Wow, did that plan back fire on me! She say I can get you in at 1 today or you can keep you August 29th appointment. Sweet, isn’t it, seeing a doc who is ONLY in office on Fridays! So despite it being 11, my kids being in the middle of lunch, and I’m not even dressed yet (shut up), I say yes. I would’ve been insane not to.

I run over there - his office is 30 mins away - is my husband’s hot no-ac-car hoping earnestly for an increase in meds to make my problems slip away and a slip that says “Endochick can play with children.” Or whatever will get me back to work. lol Instead, the doctor walks into the examining room weilding a pre-filled out Brain MRI form. I’m so caught off guard, it’s crazy. He’s reviewed the recommendations from Dizzy Peeps. He asks about the hearing loss, the vertigo, the eye pain, the migraines, the lightheadedness, the hell I’ve been living in, and tells me I’m getting a brain MRI. I’m not one to argue with a doc, but I do. I’m claustraphobic and prepaired to fight because every other doctor who has ordered an MRI for me has put up one hell of a fight on this open vs. closed MRI issue. Yet, he wielded. Rather quickly. Said it wouldn’t be a problem cause the Spine Institute has an excellent open MRI, better than the closed, and can do what he needs done. Great!

But then we go to the part of the appointment I dreaded. Can I go back to work? His reply, which took several minutes of eyebrow raising and weird facial contorsions on his part: “at least another month off.” Yikes.

My husband took it better than I thought he would, of course I was talking to him at work. He couldn’t go postal there. lol. I emailed my boss - still haven’t heard from her.

I’ve also been advised to stay out of the sun and absolutely no caffeine. Bye chocolate - I will miss you.

*First, I think someone posted a ligit post I accidentally deleted it because it was in my spam folder. I always just delete spam messages without looking at them. But when I glanced down, I noticed it was from a poster who had commented on here before. Sorry.

I journeyed out into the heat to find my sister a birthday gift. I found one, too, at the first shop. And I love it, and I think she will, too. But then I apparently made the mistake of stopping by the day care I work for to drop off a copy of the documentary I did for school and some books I had borrowed from a co-worker. My boss asks me if I’m returning to work yet, and I can’t blame her for asking. That’s not why I’m upset. I’m actually near tears right now.

She had asked me if I was still having the fainting spells and I replied that they had gotten better with the new medicine, but that I still can’t tolerate the heat. Now, part of my job in the afternoon is going out on the playground for over an hour. I can’t stand outside in my yard in this 90+ weather for 10 minutes! She then comments, and she knows this because she’s my sister-in-law and she was there, that I was able to be outside at her moms. OK - I should’ve been assertive here and defended myself more. I should’ve pointed out that A) It was 83 degrees on July 4th. B) It was overcast most of the day so there really was no sun to deal with! and C) I spent a majority of my time in a frigid pool helping to lower my body temperature. I could’ve also pointed out that the other afternoon when I went swimming at her moms it was late afternoon, thus the high point of the sun was gone. It was also cloudy. While it was hot, I was in cool water. AND when I began feeling sick I WENT INSIDE. Forgive me if I didn’t make a seen and tell everyone I was feeling sick. Forgive me if I just said I was done swimming and got out of the pool, dried off really quick, and ran inside to change in the dark, cool house (where I stayed till I left shortly after that!!!).

I did point out that I am on Desmopressin and must control my water intake now. I can no longer take three bottles of water to down while out there for my hour 15 minutes on the playground. I’m beginning to feel as my husband feels, that I may not be able to go back there. And it’s a pitty because I did enjoy working with the women I worked with. But I can’t believe I encounter such prejudice from my own sister-in-law.

Forgive me if I’m kept inside this house all day, nothing to do outside of it. No job to go to anymore. Even school is on break. Forgive me if someone has the audacity to invite me to their house to do one of my favorite activities - swim - and I feel like taking the chance and doing it. Believe me, I paid for it that night. I felt drained and awful. But at least I got to do something fun for an hour. If I’m going to feel to like crap cause I’ve been in the sun it’s going to be because I was swimming not watching other people’s kids.

Last night I was reclining in my chair, doing something on my lap top. I don’t remember what. The kids were playing in the living room and my husband was talking to me. I started just drifting off. I couldn’t keep my eyes open. I was interested in what he was saying, so it wasn’t that. Yet, I couldn’t keep these eyes open! I told him I had to go to bed - AT 6 PM! All be it, I had stayed up really late the previous night (like 1:30 am) and been awoken by kidlets at 6:30, but I dozed in the recliner till 8 while they played on the computers. So??? What the monkey??

The next thing I know it, it’s 9 and my hubby is coming to bed! I’m thinking wow, roll over to go back to bed, but then think “oh no, I have to take my Desmopressin.” I jump out of bed, read the directions again, cause I’m not used to sniffing things in my nose. I do my med, get a sip of water (cause I have to watch my liquids now) and come back to bed. And end up talking to me hubby for an hour because I’m up! Of course, by the end of the hour I’m back into coma land. Odd. Usually it takes me time to fall asleep, but last night it was like “goodnight” and I was out before I hit the pillow. Even after having a nap. Usually I would’ve been up for a few more hours. Then this morning my hubby shakes me awake at 7 am, and at 9:48, with 2 cups of coffee in me, I’m still not fully awake. I think I could sleep ALL day! And my bones ache. I mean ACHE! MY BONES!!

I feel 90!

OUCH!

I don’t want to get up, cause it hurts.

I don’t know why. The new med? The old-new meds?

A virus?

Who knows?

But I feel ACHY!!!!

I know this post has nothing to do with Endo or my current health battles. Please, bear with me. I’m sure you have all heard that Tony Snow passed away due to colon cancer this morning. I was deeply saddened when I heard the news. My grandfather always enjoyed watching Mr. Snow when he was on Fox News and then as Bush’s Press Secretary. My Gramps passed in 2003. I hope they are having a lively political discussion in Heaven right now.

Let his death serve as a reminder that not everyone survives cancer. The earlier the detection, the better the chance for survival. Keep vigilant, people. For every person that survives cancer, someone else loses their battle. My great grandmother lost her life to colon cancer. She wasn’t vigilant to the warning signs and didn’t seek help until it was too late.

Mr. Snow, you are missed.

So my endocrinologist called in my prescription for Desmopressin  for Central Diabetes Insipidus and I, doing my job as a good patient, picked it up from walgreens this afternoon. Now thankfully my insurance covered the $126 charge, and I was left with no copay. Nice, seeing as I’ll be taking this crap for the rest of my life. Lovely. But - then I got home.

I made the mistake (I’m sure every good patient does) of reading the insert these pharmacies send home with the medication. You know the one - the list of cautions, interactions, possible side effects. I think it’s important to know what you’re getting into before swallowing a pill. Or, in this case, sniffing something up your nose. Ick.

Well.. list right under the heading: BEFORE USING THIS MEDICINE…. it states, in bold lettering, “ADDITIONAL MONITORING OF YOUR DOSE OR CONDITION may be needed if you are taking…” and then BAM … carbamazapine, which is generic for TEGRETOL! WHAT?!?! It’s listed first, people. FIRST!

What do I do? Well, I grab my phone and call my Neuro. I figure I’d try him first seeing as I’m already taking that med and haven’t started on the other. Plus, since I dose in the morning and night, I’ve ALREADY taken some tegretol. And I don’t take the Desmopressin till bedtime. I, of course, explain my situation to the lovely receptionist. She says she’ll have someone call me right away. And she wasn’t kidding. 10 minutes later, which btw is insanely excellent turn around for a neuro nurse to call you, Dr’s nurse calls. This is how the convo went down:

Nurse: What is the problem?

Me: *I explain the situation*

Nurse: “Hmmm… and what medicine are you on that is going to interact?”

Me: Desmopressin .01% nasal spray 5ml

Nurse: “Okayyyy…. What is this for?”

Me: Diabetes insipidus.

Nurse: Oh!

Me:  Dr. **** prescribed it and I just picked it up and read it in the insert. *I then read the insert for her*”

Nurse: *I can tell she’s scratching her head now* “Usually the pharmacist’s system will red flag these things, if there are interactions to be concerned about… let me check my system.” * I then hear her typing, breathing, the gears in her head moving and things blowing up inside there. lol*

Nurse *After like 5 minutes* “Yeah, I’m not coming up with anything? Let me run this past Dr. If there’s a cause for concern, he’s more likely to know it.”

RED FLAG: He’s “more likely to know it” WTF?!?!?!

Also, since this conversation, and just by doing a simple Google search - I discovered a medical text book that I could view pages with Google reader that listed drug interactions and what not. Guess what was listen there???? Yup. Next to Desmopressin there were listed all the meds on the Walgreens sheet that say your dose should be monitored. This text book said why right next to each one. Accoring to the book, Tegretol increases the effectiveness of Desmopressin.

Now, since Desmopressin can cause hyponatremia if too much is in your system, I’m not into having the dosages effectiveness increased. Especially when there are other medicines for Trigeminal Neuralgia! I’m going to look and see if any of those would interact with the Desmopressin in the same way. If so, I’m not sure what can be done, and my doctors will have to have it out. Maybe I can go in for some blood work to monitor my levels for a while so I can be reassured that I’m ok. I don’t know. I’m just not into the risk factor.

Off to swim in my in-laws pool! Have a great day!