I was numb ALL OVER!

*Just an update post neuro-appointment: I went in for the Depakote IV and Phenergan injection. The last time I had this combo, I had a marginal relief and so I was hopeful it would help me again. This time, wow, my pain improved beyond belief! I went in with 8 out of 1-0 and severe swooshing and left with 2 out of 10 and no swooshing as long as I didn’t exert myself. When I did swoosh, it wasn’t bad, and I still have the tight clenching, though, in my neck. The neuro is sending me to physical therapy for my neck – to a guy who works with migrainers who have neck troubles and migraine symptoms in their necks. I’m hopeful. The meds are still making me very hungry (sure my cold isn’t helping) and the meds are making me very, very sleepy! I’m heading for an early, early bed time tonight.

My complicated basilar artery migraines usually present in the typical fashion, the right side of my body (usually my arms first) goes tingly then numb. This spreads to my leg, then my face and then upwards to my head and the back of my neck. This happens quickly, within a matter of seconds. I find myself at a loss for words, and sometimes I may lose my vision in my right eye. On occasion, I have vomited. This is rare. It only lasts a few minutes and once I come around, I’m able to walk and talk and take my own meds.

Well, last night was… different. Last night I was standing in the kitchen about to take some cold/sinus meds because I’ve been sick for a week 1/2 with this sinus cold crap! My husband was talking to me when all of a sudden I could feel my blood pressure dropping and the room getting fuzzy. All I could think was oh crap. As I moved across the room to our couch the LEFT and RIGHT sides of my body start to go numb, from the legs up! I can’t even talk! I’m laying there, staring at the ceiling, and everything is going all tingling and numb from my toes up as if it’s crawling up my body at a rapid pace. It reaches both sides of my arms then both sides of my chest, then both sides of my face. Then I find myself having difficulty breathing, and I close my eyes and just concentrate on breathing as deeply as I can. It was freaking me out beyond belief – I felt literally trapped inside my body! It took a while, but eventually I slowly felt the top half of my body release and I could sit up. Somewhat. I could speak and I told my husband to get my Midrin from my purse, and while my lower half was still numb, I took the first pill. He helped me to bed after the lower half had worked itself out, but it didn’t take long for my right side to start “shorting out,” as I like to call it. After a migraine attack, and while I’m medicated myself, my right side will have brief episodes of tingling numbness – my leg is still giving me problems today.

This morning I woke up with vertigo and tinnitus - a sure sign that not all is clear. My eyes sight couldn’t focus for a good 15 minutes, and there was a shimmering in the outer corner of my left visionary field. I never get things like that with my migraines, so I’m a bit worried. I just called my neuro’s office but he’s not in today. He’s in the sleep clinic so I left a message for his nurse. They marked it as urgent, but they’ve done that before and they’ve never called back. So who knows if I’ll hear anything. I need to see someone other than my idiot GP’s Physician Assistant. All they know how to do is give me a shot of tramadol or subject me to useless CT Scans. This is not my morning, apparently. It’s just not my week, either. What is going on!

My Week & Why I’m Going Now to Watch Dr. Who

My week, thus far, (and it’s only Tuesday, mind you!) has been one fail after another! I can’t seem to win or catch a break. And I’m not sure what’s going on.

On Monday, either my laptops power port (where the power cord plugs into) has a short, or something is wrong with the cord (but we can’t see anything wrong with it!). But, it will only recharge with the cord when you hold it and jiggle it and do the Moonwalk. And, well, I’m no Michael Jackson (may he rest in peace), so my laptop isn’t recharging. Every time I get it recharging, I go to type or the air brushes against the cable just right and BAM! it stops charging! It is so frustrating!! I copied everything important off of it and onto my husband’s PC, which has my old monitor from my old PC so it’s kind of like going home (except I’m that kid who ran away and now the cops are bringing me back in the middle of the night and I’m in the back of the squad car trying to pay them off with a pack of gum and the promise of donuts in the morning if they turn the car around – I have nothing to offer, but am desperate to return to my freedom). My mother-in-law has the same laptop, so when she gets in town (my in-laws are truckers) I’ll use her power cable to test the power cable theory. I don’t think this theory holds much water, but it’s worth a shot. You never know. Miracles have happened in the past.

The tonight, I was needing to install Office 2007 on my husband’s computer because all of his software is so old school (talking ‘97!!!). I’m used to the newer stuff because I had the free software from school. Oh, the perks. Well, we combed the house. Combed it with a fine tooth comb, and can’t find that CD anywhere! It’s been on my desk for 2 years, now it’s missing??? I can’t believe this! It’s like someone is out to get me or something! I downloaded OpenOffice instead. Screw it.

Then I went to hand my son his water, a rather full glass, and spilled it all over my purse! My hand just lost the grip! I was quick to get everything electronical out of there – my cell, my new FlipHD Mino. And nothing was harmed. No money or documents were soiled, and now the purse just needs to dry out. Hoping it does so over night because I work an early and all day shift tomorrow!

So, as you can see, my week is shaping up to be something out of this world and it’s only beginning! That’s why I’ve decided – with the hubby and kids now in bed, I will take some “me” time and watch a Dr. Who. I need a bright point in my evening. I really, really do.

NSAID’s & Endometriosis – A Brief on a Scientific Study

I stumbled upon this in the medical databases last night while searching for any current research or information on endometrios my readers would find interesting. There were two articles that jumped out, and one of which I will highlight in today’s blog post. The first article covered the popular use of NSAID’s (namely Naproxen) as a popular treatment for endometriosis and whether or not it was an effective medical treatment. This interested me because, and I don’t know about you gals, but Naproxen doesn’t even touch my pain – especially when it’s cystic pain! Yet, gynecologist’s repeatedly swear by the stuff and refuse to prescribe anything worth my copay.

Unfortunately, all I could access was the abstract and not the full article (some have full articles, and some don’t), but it was an excellent abstract to work from. The study: Non-steroidal anti-inflammatory drugs for pain in women with endometriosis ; conducted by Allen C., Hopewell S., Prentice A., Gregory D. for Cochrane Database of Systematic Reviews (Online), 2009, Oxford, United Kingdom.

The study objectives were to: “To assess the effects of NSAID’s used for the management of pain in women with endometriosis compared to placebo, other NSAID’s, other pain management drugs, or no treatment” (Allen C., Hopewell S., Prentice A., Gregory D. 2009). The study showed that, when they compared Naproxen to a placebo, it produced no positive pain relief for women with endometriosis. They also found “inconclusive evidence” to suggest that these women, women who are prescribed Naproxen for their endometriosis pain, often have to seek further medication with other analgesics.

Another interesting note about their research – “There is no evidence on whether any individual NSAID is more effective than another” (Allen C,. et all 2009). I would like to note that when I was prescribed Naproxen and found no relief, I was then prescribed Cataflam (according to my doctor, a “stronger NSAID”). This didn’t help my cystic pain either. Eventually, I just learned to deal with the pain. After all, after I read through the side effects list that accompanied my prescription of Cataflam from Walgreens, I was not about to take any more than the first three days I had already taken. Cataflam, unlike Naproxen, required me to remain upright for 30 or 60 minutes (can’t remember how long, it’s been a long time since I’ve taken it) after I took it. When I read this in my pamphlet, “This medicine can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use Cataflam,” I just about hit the deck. I don’t like stuff that could cause heart attacks and strokes when I have stroke-like migraines!

And wow, even scientists acknowledge that NSAIDS are not good for us. “As shown in other Cochrane reviews, women using NSAIDs need to be aware of the possibility that these drugs may cause unintended effects” (Allen C., et all 2009).

Unintended effects??? You mean to tell me I can get “unintended effects” from a medication my doctor prescribes that’s 1) not even helping me and 2) he’s just giving me to shut me up and get me out of his office? Great, because I don’t have enough going against me right now! So, Mr. Scientist, what are these “unintended effects”? You know, other than it can kill me!
Side-effects:
- nausea
-vomiting
-headache
-drowsiness
-constipation
-decreased appetite

And now it gets serious:
-Kidney Failure
-Liver Failure
-Ulcers

I know, you are thinking “Endochick, those ’serious’ things are only for people who abuse NSAID’s or take them long term.” Well, which category do you think endometriosis and chronic pain patients fall into? My doctor wanted me to take Naproxen and Cataflam for over two years, but I never refilled the prescriptions. The stuff made me feel icky and gross. And it never relieved my pain completely, so why bother.

How about you? Has NSAID’s helped your endometriosis? Or, like the study results, have you found they don’t really do much for your pain?

Heat Intolerance & The Midwest Summer

As you watch those national weather forecasts have you noticed the scorching heat wave blazing through the Midwest? Well, it’s been intolerable this week. Even people without heat intolerance are finding themselves affected by the increased heat index and humidity. But, for us heat intolerance folk, we are practically chained to places with air conditioning. And even the mini trips we take to venture out into the heat (the necessary trips we must take to work, or school, or to the grocery store) take everything out of us.

Heat Intolerance is when the body is incapable of feeling comfortable when the outside temperature rises. Those who suffer from heat intolerance vary in how it affects them. For me, it just depends on how hot it is and how long I expose myself to it.

I’ve learned that in:

80-90 degree weather I: feel slightly uncomfortable, but it’s not too bad unless I’m stuck in direct sunlight. If I don’t have access to water and am out there too long, I begin getting a little fuzzy-headed.

Anything above 90: Very uncomfortable, feels like my body aches and is slowed, not unusual for me to see spots, and a dull headache. Things can start going numb on the right side of my body very quickly, and if I don’t keep up with my fluids, I can pass out.

This week, my state has had heat advisories and temperatures well above 100 by midday! I don’t even want to leave my house to go work because my car is so blazing hot. I can’t start it up and let it cool down because I seriously worry my neighbors will steal my car (believe me, not a good situation when those kids are home on summer vacation!). And then after work, when I go to leave for home, it’s a virtual sweat box for about 3 minutes until my air really kicks in. Problems is, it only take me 7 minutes to get home. Thankfully, I can walk into my house knowing it’s going to be cold in there!

So, here I am. I’m longing for Fall, but not wanting Winter. I’m loving Spring, but not liking Summer.

Getting fit with the Wii Fit

I let my husband buy a Wii for Father’s Day. He’s been wanting one for what seems like forever, and I finally let him work it into the budget. He sat down and found the money, and on Saturday we took at trip to Toy’s-R-Us and bought the Wii. I figured if I couldn’t get my XBox 360 with Rock Band then I was spending the rest of my graduation money on the Wii Fit. Just ’cause it was Father’s Day doesn’t mean I couldn’t get me a present, right???

I LOVE that Wii Fit. It’s so much fun!!! I am not about to divuldge how much I weigh or anything like that, but even after eating Father’s Day Pizza Hut and Dair Queen I managed to lose .4 lbs. I worked out for 55 minutes this morning doing aerobics, yoga, and other balancing things because my balance is terrible! This didn’t come as a shock to me or anything. I can’t feel half of my right foot most of the time, so yeah, balance is going to a bit challenging. But, overall, i have some improving to do. I’ve given myself a goal and three months to do it in. Let’s see if I can make it. I know I can. Heck, school was tougher than this and I blew that out of the ball park!

I managed to lose 25 lbs. with just changing my diet – going organic, increasing my fruits, veggies and whole grains, not eating red meat, pork, and only eating limited chicken. I eat junk food very sparingly (yesterday doesn’t count – it was my husband’s fault). Now with exercise, maybe I can lose another 25?

New Endocrinologist & Central Diabetes Insipidus

I had my appointment the other day with the new Endocrinologist. I was tense, I must admit, about starting over with a new one even though I didn’t have a choice in the matter seeing as the old one flew the coop. But she was highly intelligent when it came to her field, not like my old doctor. I didn’t have to hold her hand like I had to him. She already knew my history from his notes and didn’t start off by questioning any of my other diagnosis’. She performed her physical and and went over my medicine and listened attentively. It was nice for a change. Really nice. When I told her how I had had the stomach flu Sunday (my apt had been on Tuesday) and within 4 hours of the vomit/diarrhea combo I knew I had to get the phenergan shot or I would end up in the ER, she was grateful that I know how to handle my disease! With that one example, and explaining to her how I keep water on me – especially at work when I’m outside in the heat - she learned that I’ve lived with this for a year (diagnosed, 3 before that undiagnosed) and knew how to handle my life with it. She ran some blood work to make sure my levels were good seeing as I had had the flu and I guess some slightly off levels in March. But everything turned out good as she called me later that day and said I was clear to keep taking my dose at night!

Living with the knowledge that I have Central Diabetes Insipidus is like running a marathon of constant adjustment, but I’m used to this. I have this for my other chronic illnesses, so it’s nothing I can’t handle. There’s no caffeine anymore, no msg’s or fake cheese or alcohol for my basilar artery migraines. Then there’s nothing more than light touching on the right side of my face for the Trigeminal Neuralgia (light touching = transient numbness/ rough touching= sharp pain). All I do is take a pill in the morning for my thyroid, so that really hasn’t hindered me so far, unless I miss my pill because I forget to fill it (which I have done too many times) and then OMG do I feel like a train wreck just slammed into my body at 1,000 miles per hour! Then there is the whopper, endometriosis. That one is like a nagging ache that comes around when you least expect it or want it to, to say “hey partner” and sticks it’s slobbery tongue out at you. It camps out on your couch like that annoying family member you disown around friends and will only go away when you mask it behind a veil of drugs. But when the haze clears… there it is… still on your couch, eating your Cheetos and drinking your iced tea. Finally, you have success, you’ve kicked it out just for it to wander back onto your doorstep next month… or a week later… or maybe even a few days. There is just no getting rid of endometriosis because it’s like a cockroach – this stuff will survive a nuclear blast.

@cafepress makes me happy

I was elated this evening when I booted up TweetDeck to see a reply and DM from @Cafepress:

Are they kidding me?? Is this someones idea of a sick practical joke??? Wow, was I surprised. I don’t win things, people, especially Flip HD’s!!! I’m such a geek – this Flip HD is going to come in handy on game night!!! I’m squealing.

I usually use my cell phone and take little 5-10 minute movies (sometimes) or just take pics. And I don’t do that often ’cause it take so much memory on my camera, and since I don’t have the bonus package, it costs so much to send this stuff to my computer – I usually don’t mess with it anymore. @jeanniebop31987 has taken over camera duty pretty much and does take some random clip videos, but now I’m so excited that I can do more!!! And post right to Youtube more easily!!! YAY!!!!

Here is the Flip HD I selected:

This is such a perfect Geek Girl Gift if I’ve ever seen one. My husband asked me to explain how I had won it like three times. @cafepress asked people to tweet using Twitter during a contest the other day. I don’t remember the specifics of the contests, but it required you to select a t-shirt from their website that demonstrated creativity and a few other things (my mind, right now is on elation fumes! Forgive me!). Well, I selected the “Rock Paper Scissors Lizard Spock” shirt. If you watch The Big Bang Theory you know what this is. I will have to be buying me this shirt since it helped me win a sweet camera, even though I can’t make a Spock to save my rock, paper, scissors, lizard, Spock… but I can make a lizard… well, oh well.

This geek girl says thank you @cafepress! I can’t wait to start filling up a new Youtube channel with vids!!

Put ice on it?

If you follow me on Twitter you would already know I’m in Endo Land today. Riding high on the Endo Expressway with no apparent exit, yet desperately needing one. This has been going on all week, just at an understated level of pain; at a level I can tolerate. No meds, not even a heating pad were needed this week. But then this morning it felt as if my pelvis had been drop kicked into submission by the jaws of life or Jet Li making a new movie on it. It was way-too-tender and bloated. I should’ve seen this coming really. Ever since the bout of diarrhea (sorry t.m.i. – I know) I had last night that gave way to a very icky tummy feeling that just cramped all over. Then this morning, I wake up and the gates of the netherworld are open to great me – “Hi, Endochick, it’s been awhile. Just thought we’d come and visit. Not like you’re busy today.”

But I AM busy today - I have work this afternoon and a tea party/jewelry party to host this evening. Of all days, I don’t need this! So I’m on Twitter and get some interesting advice from @missmotorcade. She says to put ice on it. I have never heard of doing this. Not once. She says the heat makes the endo bleed – which makes sense. I haven’t tried it because I had taken some pain meds and am now on mellow street, but plan on checking this “ice it” method out next time I have a chance.

Has anyone else “iced” there endo?? Not one of my gyno’s have ever suggested doing this. I wonder why.

Miserable

I was stricken with a migraine on my way to work and I am now dealing with the s/e’s of my abortive medication. I feel doped up and slowed down.

That familiar ache in my pelvis has plagued me since this morning, when coincidentially two bouts of diarrhea also visited me. I’m not sure if the two are related, but I have a feeling they are. I am sure this pain is cyclical now. There is a definite pattern.

I am not in a good mood this evening. I’m exhausted and in pain and just not thinking straight because of it all. I plan on going to bed early. I really need this.

Hopefully the morning will bring a better day with it. I really need a break.

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