FAQ's

Don't you love it when you see that...FAQ's...and you just hope that your question will be one of those answered? That might be one of your questions today because that is what I feel like blogging about.

I'll do my best to keep it happy but to be honest, that's pretty hard when a friend you consider to be your very best, has now unfriended you on Facebook because of articles you posted. Hey, I'm glad she was up front about it, but that is so NOT HAPPY feeling for me. I'm sure you can understand. Sooo, here are some answers (my long winded kind) to your frequently asked questions.

1. What is wrong with you?
Nothing. At least if you ask me. Not a single thing.
2. What was wrong with you?
Chronic pain that lasted years and years and years. That had me getting surgeries, taking long lists of drugs, seeing tons of doctors, costing myself and our insurance hundreds of thousands of dollars I'd bet.
3. What finally stopped the chronic pain?
The 4th session of an experimental drug cocktail infusion.
4. Is the chronic pain gone forever?
I wish! I hope! That would be a miracle, wouldn't it? I've never heard of anyone "getting rid" of fibromyalgia. I have heard of chronic migraines being treatable and I've finally experienced that for myself. So no, I doubt it.
5. What is in a cocktail infusion?
Drugs (the prescription kind) and mega doses of vitamins. It's different for every patient based on their doctor's orders and what their specific source of chronic pain is. What was the "secretive" ingredient in mine that I believe changed my world? Ketamine.
6. If my pain does return...as bad as it was before...would I go in for another infusion?
No. Not at this point in time anyway.
      Why not?
My doctors would never prescribe it. They've never seen the kind of reaction I had/am having.
     Would you push for it if YOU wanted it?
No. Not at this point in time anyway. I'm too scared of it. I've been puzzling this one over for a long time. David asked, "So you'd rather go back to how you were 6 months ago?" No way! But I'd rather never go back to how I was mid-May when I ended the treatment and asked, "Who is David? Who is Jesus?" When I then had to have yet another MRI, EEG, and now IQ and other mental health tests. I've had them all before by the way, except the IQ testing. I'm still waiting for those results.
     Would you suggest it as an alternative to someone else in your shoes?
And here is the sticking point for me because right now I'd have to say No. Not if they had/have to go through everything I have the past few months.
7. What is so bad that you'd rather have chronic pain again rather than another cocktail infusion? I kind of like hearing exactly what you think.
I know, right!?! It's so refreshing and I encourage EVERYONE to do more of this. Communication is key to solving problems. Why hide what you are feeling? I'm not always right (for heaven's sake folks, look at the title of my blog!) and I'm totally open to hearing what you think, too. BUT...and this is the biggest sticking point for me...since the treatment it is almost impossible for me to NOT say/write/type whatever I am thinking. That is the biggest difference. Before I could keep my mouth shut. Now I can't.
8.  Why is keeping your mouth shut bad?
I've no clue! How else are you supposed to get help for what ails you? If you need something, ask for it. If you want something, ask for it. That doesn't mean you'll get it and you might get it and then realize you didn't even want it to begin with. Yeah?!? Isn't that life? Isn't that learning? That's God's plan. I'm not a robot. I'm tired of feeling like a robot because I was so drugged up and/or in constant pain. Now it's your problem if you get offended by my ramblings, not mine. I'm not shutting up and sitting down anymore because I don't want to. And if you are offended by that right this minute...stop reading and go somewhere else! (Now I'm not feeling too happy. I'm pretty ticked off. Rightfully so in my mind. As if you can't tell :))
9.  What have you posted that was so offensive to your friend? 
This: I have so many blessings. SO SO MANY. I am happy, I am pain free, and yet I still can't keep my thoughts to myself. You know what? I NEVER WANT TO AND WON'T AGAIN. My friends, family members, or people who just stumble upon this post...does it matter if these testimonials are false? I really really REALLY doubt it. Just take a look and then ask yourself how in the world Planned Parenthood is good for you, your family, your friends, or the public in general. IT IS NOT!

www.silentnomoreawareness.org

SILENTNOMOREAWARENESS.ORG

10.  Why was that so offensive?
Apparently because I am now bombarding people with my opinions and I'm judging them and their decisions. She tries hard to respect where everyone is in their own hearts and not post divisive material on her FB page.
11.  Did I mean to be offensive? What did I do about it when I learned I'd offended my friend.
Oops, switching tenses and stuff again. Remember the IQ tests folks and just roll with me here.
Of course not, fool! I quickly posted this: t's been brought to my attention that some of my posts and/or comments are offensive. Have you seen the movie "Finding Nemo"? My family tells me I am Dory after my treatment this spring. Folks, I'm still shouting at everything and everyone. I might be happy, scared, confused, ignorant, or whatever else. Sorry if I'm not pc enough for you. But I'm happy & pain free & chugging along just like everyone else. My blog title is Being Happy is Better Than Being Smart. Being happy is better than being quiet, too. Trust me. You do what you feel is best and I will do what I feel is best. Neither one of us needs to apologize. The jot of being American. Enjoy it as long as you can! PS: Have a great day...I plan on it 
and then later that evening when I had some time I followed up with an email.
12. Now this is getting good! What did your email say?!?
Come on now! She is still my best friend and I'm not throwing her under the bus. Sheesh, what kind of friend do you think I am? If you really want to know my thoughts on abortion and Planned Parenthood ask me yourself! But beware, I won't be PC about it because I really don't care about that anymore. So don't ask and I won't tell. Or do, that's totally up to you. Moving on...
13.  So now what?
Sigh. I've got this dang smiley face icon I can not get rid of. That would be first on my list to do...get rid of that stupid thing! But now there are two! I can't seem to get ahead or behind them so they are staying where they are for now.
I know, that's not really what you mean. (Though I am getting pretty hungry because I've spend all morning helping at an Eagle Scout project. I'm gonna go get some lunch here REAL soon.) And I can't answer you. It's wait and see. Smile and enjoy the beautiful day. Count my many blessings. Keep on talking/posting/writing as long as it keeps me happy. Chug along every day just like y'all do. Because really, what else can you do?
14.  I choose to be happy.
So there you have it. Smart? Who knows. Beautiful? That's in the eye of the beholder. Crazy? Maybe. Experienced? For sure! Cautious, optomistic, pessimistic, frustrated because the spelling is harder and harder and harder? Ha ha, you can obviously tell because yet again I'm not going back to fix that typo. Well duh! Of course. Wouldn't you?

And now I'm heading for some lunch. Don't ask me what I'm having. That is another side effect of my last infusion. I have no appetite or desire for food. I scrounge whatever I have on hand. Could be prunes...could be chocolate...could be whatever is in the cupboard or fridge and that needs to be eaten before it spoils. Now THAT is a definite change. (Except for pickles. I still hate them much to my husband's dismay. Oh well, that just means more for him, right?)

In conclusion...being happy is better than being smart. Being happy is better than being sad/bedridden by pain. Being happy is so much much better than being quiet. You should try it sometime!
mile emoticonsI


14

Day 1 of Infusion # 1

I have to admit, I'm super confused myself about how I feel about these infusion cocktails. Why am I being so secretive about the ingredients? Why did I (do I) feel like it's so secretive coming from my doctor's office? People surely can't buy all the ingredients and make their own just by googling it, can they? Are they worried about lawsuits? Are they worried about government over sight? Or are they trapped by laws and rules and regulations to save their own skin and personal reputations and jobs? That is probably the best answer I guess.

But I don't care about all that, really. Why? Because after the first transfusion, I mean infusion, now (how's that for a big oops!) I felt surprisingly better. For about 3 weeks.

Let me back up. This is the funny, but not really, story behind that. It's supposed to take 4 hours and I can't drive. I'm just going to be laying there or sitting there or whatever so what do I do? I show up with my laptop, a movie, some emails to catch up on, etc. They have WIFI, I have headphones, so why not? This is supposed to be as pain free as possible, right? You should have seen the nurses' faces. Confused is one of many adjectives I could choose from.

They hook me up to heart monitors and an oxygen reader goes on my finger. Oops, they didn't mention that in the one and only "bedroom" the monitor is old so one of the probes has to go on your leg. I definitely would have shaved had I known that! Oh well, they are nurses...both a man and a woman...no biggie. I've got my most comfy fibro pants on and a t-shirt. (Fibro pants are very loose fitting work out pants so I don't have to feel any seams against my legs.) Needles don't bother me so I get all hooked up but I also didn't realize that I'd be getting a mega dose of sedative in the cocktail. Oh really? Why? Because ketamine tends to make people disoriented. Oh, OK. Can you plug in my laptop right there? I don't think I can last 4 hours on the battery alone.

Again, mass confusion and glances my way. You DID sign the paperwork, right? Yep. Well, I'd suggest you do any emails very first. Again, I was confused and wondering what in the world they were talking about. I'd had sedatives before and sure, they make you sleepy, but they don't stop the kind of pain I deal with and sitting here isn't helping, either, so let's go already.

They give me pillows to prop between my knees, very helpful, I've got warm blankets if I want them, I'm already starting to get a little drowsy, but then they put the rails up on the bed. Huh? I know it's a twin but I'm not that big and when you have fibro rolling over can be a big deal. Hooked up to all those wires it's an even bigger deal. But hey, my fingers are already starting to move slowly and the emails are sliding all over the laptop screen. I quickly realize they know what they are talking about so they take all my crap away and put it well without my reach so I don't knock it off or something. What kind of vitamins and "stuff" is in this cocktail?

Another honesty disclaimer...again none of your business but just to make you understand my thoughts a little better...I've never done drugs. Not for fun anyway so I had no idea what tripping or getting high was like. NO IDEA! All I do know is that it IS a good thing I had that bed rail up because this was going to be a lot more difficult than I ever imagined. I learned the hard way that first day to never have to go to the bathroom when you are hooked up to an iv cart. You can't walk by yourself. The nurse helped me but man was I holding on to that thing and very much in danger of running into walls and counters. To my horror I could not be left alone in the bathroom. Stage fright, folks, is all I've got to say about that.

I did notice, however, that the clinic only has one private room. Everyone else was sitting in lazy boy type chairs with ER type curtains that could be pulled around them. They all circle around one big open cubicle type thing with a nurses station. There were two nurses that first day for me. And it's a good thing because I know I was not their only patient. But I couldn't tell you much else about that first experience.

Frightening? Yep, for me since I like to be in control of my surroundings and what is put into my body. Embarrassing? Heck yes! I don't pee in front of strangers...ever! Confusing? Duh. But they gave me my privacy as much as they could, they offered me snacks and/or water if they thought I might need it, they checked in on me I guess because I know they helped me to the bathroom, and voila...the first treatment was finally over.

The first thing they ask you is, "What is your pain level?" That is the first question when you both start and stop a treatment. To this day I wouldn't know how to answer that question. Pain? You want me to get out of this bed and walk? Right now? Yeah right. I think my husband picked me up that first day. I can't remember. But I made it home (obviously) and slept or something for the rest of the day. So I could get up and do it the next day, too.

I WILL go into detail again about day #2 just to show you that not every treatment day is the same. It can get worse. Day # 2 was a LOT worse. :(

Cocktail Infusion

I'm really going to try and get to it today. Maybe even name "He Who Shall Not Be Named", the main ingredient of the cocktail infusion I was given. (That sounds really...hmm...Exotic? Fancy? Snobbish? I don't know but I kinda laughed when I heard it mentioned to me like that.)

So imagine you've been on narcotics for years. I don't mean every day I'm addicted I've gotta lie, cheat, and steal and shoot up kind of way. I mean the more you hear about on the news. The suburban housewife hooked on pain meds. But see, I wasn't hooked on pain meds. I did not crave them. I did not want them. I only took them as necessary but dude, they were necessary quite frequently!

Why? What was so bad to make this stay at home mom with so many blessings and so many things going for her who looks like Barbie (ha ha, thanks Brit for the compliment. I'm definitely stealing and mentioning THAT one because hey, who ever gets a compliment like that?!?) want choose to be home bound and bed ridden and drugged up to the gills?

Have you ever heard of chronic migraines? Probably. But have you ever heard of fibromyalgia? Probably not. You can google it. You can try to understand as I would type pages and pages of personal experiences but I once saw this picture pop up on Facebook and I cried. THIS. THIS is what fibromyalgia feels like many many many days. (Sorry folks, this is graphic but it is stage make up.)

Imagine being touched and crying out in pain. Imagine being hugged and crying out in pain. Imagine sitting or standing or lying in one position for very long and NOT crying out in pain. Imagine wearing jeans or other clothes that the seams hurt too bad because they were touching you.

Now add in migraines. I'm not talking a headache. I'm talking splitting pain where you can not stand the sun, the sound of laughter or music or sometimes even your pulse beating in your veins, or the smell of foods (yes, even bacon!) making you want to vomit.

Now add in not being able to sleep, being depressed, getting so dizzy you can hardly stand up so you have absolutely no balance, you get so confused you can't even think sometimes (but hey, thinking is overrated when you are concentrating on not MOVING because you hurt so bad), and people wonder why you look you are about ready to cry. They say, "Wow, Lisa! You are losing weight. You look great!" Or they say, "Mom, can you take me to band practice? Mom! I need a ride to band practice. What about church? What about birthday parties?" Or, "What's for dinner? When are you going to do laundry?"

Now you tell me...do prescription drugs seem the answer after you've tried EVERYTHING else you can think of? Even priesthood blessings? For me that answer was a definite YES. GIMMIE GIMMIE GIMMIE. But please, doctor, what are the interactions for this? Am I taking too much? Should I be worried? I don't like the way these meds are making me feel.

Sigh. Years of this folks. Years. So yeah, I jumped at the chance for an experimental cocktail infusion. But strangely enough I don't remember getting any (and I save everything so I'm pretty sure I wasn't given it) specific ingredients of this cocktail...though I do remember briefly being shown it for a quick minute at one appointment but I wasn't offered a copy of it. I didn't ask, though, either.

It was legal. It was covered. I could be seen soon. Sign me up!

But at the chronic pain clinic where I go it was not offered in my regular doctor's office. No, I had to go 45 minutes south to the infusion clinic. It would take 4 hours and this was to be done every day for 3 days in a row. I would be hooked up to an IV because you had to get it slowly and I could not drive afterwards. I was told to expect to be unable to function those three days but the "sedative" type effects should wear off within 24-48 hours. OK. The hope was that it would essentially shock my central nervous system so it would quit over reacting to all incoming stimuli and calm down already. Sure thing. Whatever. Just get me started!

So right before Thanksgiving I started my first infusion therapy.

What DID happen this spring?

I know I've been jumping around a lot so let me get back to this spring. Let me preface by saying that I DO NOT RECOMMEND THIS TREATMENT. Do I need to say that again? I think not.

So I'll go back and forth and explain as best I can from whatever comments and/or questions I get but here's the deal. For the past 10 years or so I've been on a medical roller coaster. I can't even list to you all the vitamins, herbs, diets, prescriptions, doctors, nurses, ideas, hints, theories, shots, what have you that I have tried to feel better. That has led to surgeries. Braces. More surgeries. More medicines. More doctors. More EVERYTHING. And through all of this I'd bet most of you had absolutely no idea, did you?

I look fine. I act fine. Ask me and I'd tell you I was fine. Why? Because I was doing the best I could with what I had. Just like you do. Just like everyone does. At least so I assume. What else CAN you do?

I'm not one to curl up and die, literally or figuratively. I've known people who have. Do I judge them? Good gracious, NO! Why? Because I've walked in their shoes. I FEEL like I know what they are going through. I can talk with people about their medical issues and so many people have told me that they appreciate talking to me about it because for once they feel like someone gets it. FINALLY, someone knows what they are talking about.

Chronic pain can do that to you. Drugs can do that to you. Talking to people and sharing your stories can do that to you. Putting yourself out there for riddicule (again with the spelling) and judgment and weird looks can do that to you.

But I did it. I do it. And I will continue to do it.

So what all drugs am I talking about specifically? None of your business plus I couldn't name them all if I tried but it covers antidepressents, muscle relaxers, narcotics, epiliptic medication, (too bad there isn't a spelling medication...or is that practice...or spell check...or slow down and edit? None of which I am willing to do in my haste to get this out.), sleep medication, parkinsons disease medication, allergy medication, intestinal mediation, sinus medication, cavity/tooth medication, anxiety medication, steroids, and these are just the ones I can remember. Pretty impressive, huh? Or depressive.

But I've never done anything illegal. I've ALWAYS walked the line and tried my best to follow my doctor's orders. So when I heard about an experimental drug treatment that would maybe help keep me from getting a surgery sometime down the road that I might possibly have to remove my jaw and shave off a few millimeters, etc, I was all over that. ALL OVER THAT. And can you blame me?

You know those drug commercials you see on tv? Annoying aren't they? Especially the small talk that is longer than the actual commercial that lists all the possible side effects. And then when you pick up the actual prescription you get pages of paper that have such tiny writing that you can hardly read it and it goes on and on and on, too. Who reads all that? Who has time? Now combine that with all the number of drugs I was taking and how many of those side effects, or possible side effects, might be the same? Yeah. You catch what I'm saying here.

So this experimental thing really had no papers to sign in comparison. No real list of what was involved. All I knew was that my doctor suggested it and it was experimental. My insurance would pay for it. I was desperate. I signed up. That was the beginning of my ... miraculous story.

And I hate to break it to you folks, but that first happened back at Thanksgiving time of last year. So here I've gone through one whole post and I've teased you yet again. :( I'm sorry. Really!

Enjoying the Sabbath Day

Just kicking back enjoying the beautiful Sabbath Day. Luckily it is a day of peace and rest for me today. How about y'all? Because sometimes don't you think it can be super crazy doing all the running around for the Lord?
Jennifer, my oldest, was born on a Sunday by the way. For those of you who think Mormons don't walk on the Sabbath or go to hospitals or anything you are wrong. At least not for THIS Mormon. I can not thank my doctor, the nurses, family, friends, and everyone else who helped me that day and the many days to come.
I also believe in modern Western medicine. Again, maybe you don't know or really care but I always intended to have an epidural with this pregnancy. A cesarean? Nope. But did you know (another off the wall fact) because we DID have a "complication" our insurance covered 90% of the expenses instead of the customary 50% or whatever it was at the time? Get this...we put our firstborn daughter on a credit card. She wasn't payed off until she was almost 18 months old. Ha ha, what would they have done had we not been able to pay...repossessed her? (I probably shouldn't laugh and make a joke about that now a days but there you go, my sense of humor. Love you, Jen!)

Now if you take a close look you'll notice that I probably did so many things wrong (both with my scrapbooking skills and my parenting skills and decorating/fashion skills or whatever) but do you think I care? Not a bit! Look at that face? So you can't tell if she's a boy or girl, who cares? Most, no I take that back, probably all of those clothes were hand me downs or gifts and it just so happens that I THOUGHT I was having a boy (remember my previous post) but it didn't matter...they were free. No playpen? Laundry basket. No teething toy? Student housing telephone cord.
You might notice that one of her feet there in the car seat looks awfully bulky. Well, uhh, yeah. That one is all my fault. You see, she had a broken leg. Now adays I'd probably have CPS called on me and monitoring me for both that and the above pictures but guess what? This little cutie is alive and well and besides my bumbling loving attempts, she is one beautiful, smart, intelligent, married woman herself.
(If I knew how to stick my tongue out I'd probably do it right about now.)

What is my point in today's rambling? Hmm. Let me try and tie it back in with my Sabbath Day title. Give me a minute. OK, it's this. Remember one of my reasons for writing this blog is tell you about this miraculous experience I had? I don't know if I mentioned that I honestly believe if it weren't for my faith, family, and friends I wouldn't be here today.

That is important so let me state it again: I HONESTLY BELIEVE IF IT WEREN'T FOR MY FAITH, FAMILY, AND FRIENDS I WOULDN'T BE HERE TODAY. And I mean that in that order. Because I have to wonder if I would be dead right now or in a mental institution without them.

Now how's THAT for another teaser? Really, I should be an author :) Enjoy your beautiful Sabbath Day y'all. It's great!

Hold Up

You're right, Michele, and others. I'm in no rush so let me take a minute to just say this...yes, I DO want to focus on the positive because hey, I'm naturally a happy person. Or at least I try to be. But don't be fooled into thinking that my life has been or was a bed of roses up until this point just because I glossed over everything in my hurry to get to my "life changing experience" that happened this spring.

Roses are beautiful and all but have you ever tried to pick those things? They've got thorns people and they can draw blood! We've all got our good and bad experiences. Funny and sad. Some have more of one than the others but let's get real. Here's some more pictures to illustrate what I mean. Who woulda thunk I would have been married at 19?

 See what I mean? You never knew what you were gonna get! Big hair, mullet, boy hair cut, glasses, no glasses, smile, ... Let's just leave it at that shall we?

Again, how many pictures have you posted of yourself from back in the day to the whole world y'all? Uh huh. That's what I thought. :)  Enough said.

My whole point for today's blog post is to remind everyone that yes, I grew up poor in that I got free/reduced lunch. Did that make me any less happy? No. Did I have everything I needed? Yes. Was I well loved. Yes again. Obviously. Remember how I said I grew up LDS? Did I look sad and mal-adjusted to you? Even though I had a "large" family? No. Did I look like I was well educated and like I wanted to get married? Yes. I had a "normal American childhood" according to my state and socioeconomic way of life.

Do you care? Don't know. Why do I feel like you need to know? Again, I don't know. It's really none of your business I guess but I feel like I should point it out so there you go. And also because I feel like saying it, my husband comes from a pretty similar background.
(But I'm not going to post pictures of him. I must say it's a good thing I DIDN'T see his teenage pictures before we met because then I might not have been as attracted to him. Just sayin!)

Love you, Dave!

Moving On

I feel a sense of hurry. Hurry and get to the point. The point of what? What happened to me? My past, my future? The future of this country or of the world in general or of me in general? I have no idea! What do y'all want to hear about? What do I want to say? Comments would be appreciated I guess. Just remember to keep them clean and don't expect me to answer each and every one if I get busy doing something else. That's not too much to ask now is it? :)

So go with me back to the 90's and here I am a poor college student who decides I want to play house and have a baby. WE decide together this is the best plan of action for our family and right away we get pregnant. Now THAT is scary, folks!

My whole life I've dreamed about being a mother and I am sooo excited but come on now, there is some foreign thing growing inside me and I'm scared to death! I'm young and healthy and keeping notes on every little thing and not getting sick at all. But at times I do wonder why I'm still going to school. I mean really, the plan is for me to be a stay at home mom so why do I need to keep busting my butt going to school for this double major? Dave is smart. Really, really smart. He's working part time, too. Though it is at Discount Tire but I'm also participating in the Color Guard with the marching band and it's hot and sweaty and tiring and give me some pity points, I am pregnant here!

But no, the deal was I would finish school no matter what if we decided to start a family so I stick to it. I told you this was complete honesty. And can I also admit I kinda wanted a boy first, too? Back then we didn't get an ultrasound unless there was a problem and since I was healthy as a horse I didn't need one. I kept pestering Dave with, "What do you think it is? Just pick one already!" So he did and picked a boy. So I kept thinking of little one as "he". Duh, Dave had a 50/50 chance of being right. Why did I think he was having some revelation or something? Men, here is how women's minds really work. Or at least how my young mind did at that time.

Anyway, here's a picture I found that I'm willing to share. So we plowed along and to our utter joy and delight, our first born DAUGHTER was born soon before my 21st birthday.

It's OK, you can be jealous of the hair, or dress, or smile or whatever :) 

I'm sure Dave would say the same thing. But really, you SHOULD be jealous that I had such a good friend that made me this dress for our sweet little Jennifer Lynn.

 Did you know, though, that a C-section is NOT something you want? I always thought maybe that would be preferred since giving birth was such a scary thing to a first time mom. Nope. I had to learn the hard way that a breech birth equals an automatic C-section in Provo at 5am on a Memorial Day weekend to my particular doctor. And on that particular Memorial Day weekend that meant running out of pain medication, too. And not getting to see your first born daughter for hours because she was whisked away to the nursery and they kinda forgot about getting her back to you. Hmm. Lot's of things I didn't know.

Really all you people reading this blog, there are so many things first time parents DO NOT KNOW that they really really should. Maybe this blog can help someone in some way? If so, you're welcome. If not, hey, I tried. And now I'm ready to move on...