Monthly Archives: August 2014

It’s been a big week…

This week I did a couple of things that I have been wanting to do for quite a while…and that terrify me.

1.) I went back to school! I have been wanting to do this since I graduated 2 years ago, but I let my health, my ex husband, money, and not knowing what I wanted to do get in the way. Not anymore! If I’m too sick, I don’t care, I’m going to live my life. Plus I finally think I know what I’m supposed to do with my life, now to just do it…and it’s going to be a long road.

I enrolled in just one class, Parasitology and Human Disease (lol!), and based on the first day of class I think I picked the right one. One professor is funny and the other seems very nice; plus the schedule appears to be the right pace for me to be able to handle. And I’ve also made a sort-of friend! (That’s a huge deal for me with my social anxiety ūüė¶ ).

2.) I quit my job. This is really hard to do, not to mention really scary. I’ve known it needed to happen for quite a while but it’s easier said than done. I love the kids I watch and the family I work for, they’ve done a lot for me over the 4 years I’ve worked for them. I’ve watched the kids grow up a lot, and can’t imagine not being there to continue watching.

Not to mention all the complicated emotions that come with losing the ability to work due to illness. This is the first time that I have really felt like this disease is ruining my life; the first time I really feel like it is taking stuff away from me. I’ve been lucky to not have had to really deal with those emotions before, but that makes this harder. I feel like I just was pushed off the end of a cliff and I have no idea what is at the bottom. I am not entirely sure how I will support myself, or when I will be able to work again, or IF I will be able to work again…if I’m being completely honest. That’s absolutely terrifying.

I’d like to write more but I’m just pretty exhausted and numb. I don’t know what to say other than that I hope I’m making the right decisions.

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What (or who) are we really fighting? (sorry, long rant!)

Tonight I am angry. No, I am livid. 

I’m sad too.¬†

Yesterday I saw my primary care doctor, one of the things on my (as usual, very long) list of things to talk to her about was pain medication. Months ago she prescribed me Norco (hydrocodone and Tylenol combination, pretty low dose stuff), I still have some left since I don’t take it every day, but it’s just not working anymore. Apparently my pain has gotten so much worse lately that it is just not strong enough any more.¬†

This isn’t the first time this is happened, it happened last fall too. Last fall I went from Tramadol (non-narcotic) to OxyContin, over night. So I’m not shocked this is happening, especially given that I have been treating lyme for 5 months which has made me very toxic and inflamed.¬†

So my doctor asked some questions…

“How often are you using the meds you have?”

¬† ¬† ¬† ¬† ¬† ¬†“Probably 4-5 out of 7 days in a week”

“How many are you taking?”

¬† ¬† ¬† ¬† ¬† ¬†“2 at a time, every time, and usually twice a day.”

“How often does it not give you any relief?”

¬† ¬† ¬† ¬† ¬† “At least 8 out of 10 times”

“WOW.”¬†

¬† ¬† ¬† ¬† ¬† ¬†“Yeah.”

So she wrote me a script for something else, something stronger. But that’s not what I’m angry about.

I’m angry because I have been to SIX pharmacies today and¬†still¬†do not have my pills!¬†

If you’ve never experienced the “war on drugs” (aka, the “war on chronic pain patients”) first hand, here is a little illustration for you.¬†

* Note: This post applies mostly to schedule II drug, ie. oxycodone, oxycontin, dilaudid, morphine, methadone, even ritalin and adderall. Schedule III drugs, such as hydrocodone and codeine, are still restricted but not as severely. Schedule I drugs are things that are illegal to prescribe and use, such as marijuana, heroin, LSD, Ecstasy, etc.; even though many of these are said to have medicinal benefits (that’s a post for another day, but don’t expect it from me any time soon!).¬†

1. Doctors are all terrified to prescribe pain medication. Everything is tracked and charted and investigated like crazy, and doctors don’t want to have the government breathing down their backs. So they just don’t prescribe meds at all, even when their patients are obviously in pain. Generally doctors will tell you to go to “pain management”; special doctors who are supposed to specialize in managing pain, but in my experience are even MORE scared of writing prescriptions than regular doctors are! Even if they do write scripts, for some reason they tend to be real jerks, and have their own sets of rules. I’m talking drug tests at every single appointment to make sure you are only taking what they are prescribing, written and signed contracts agreeing not to take scripts from any other doctor, etc.¬†

2. Once you DO manage to get a script, good luck finding a pharmacy that carries what you need! 

3. If you do find a pharmacy to fill it, have fun jumping through all the hoops and following all the rules! Every pharmacy, and every location within a chain of pharmacies, has different rules. Some require 2 forms of government ID, others will hold your script for 24 hours before they will fill it, other’s won’t fill the script if you don’t live in the same zipcode as the store. There are rules about how many pills you can get at a time, how many refills you are allowed to have (usually¬†zero), etc.¬†

For example, my problem today; my doctor wrote a script for 20mg, but of course no one has 20mg tablets in stock. With other, non-scheduled, medication the pharmacy could simply call the doctor and get approval to give me twice as many 10mg tablets, and I could just take 2. Not with pain meds! Anything that is a schedule Ii or higher cannot be given as a verbal order, so I would have to go¬†back¬†to the doctor, get a script for 10mg, and then go¬†back to the pharmacy…I may as well wait the week for them to order the 20mgs!

Meanwhile I sit here in pain, taking double and triple doses of the crap I have now, and still getting very little to no relief. 

The last time I was on a schedule II drug (OxyContin) I swore I would never do this crap again. I said nothing above a schedule III (much fewer restrictions). It’s just terrible to have to deal with.

Already in tons of pain today, I spent the better part of my day running around town to 6 different pharmacies, just to be told “no” every time. Naturally this made my pain much worse, and completely exhausted me.

Not to mention that there is this huge stigma around people who use narcotic pain medication, so many people (people in the medical field included!) assume that if you have a script for pain meds (especially for a schedule II or higher) you¬†must¬†be a drug addict. So you get strange looks at every pharmacy, and heaven forbid you get frustrated that the 6th, or 10th, or 12th, pharmacy you’ve been to doesn’t have it, because then you’ve just proved them all right.

I experienced this first hand two weeks ago when I had my pacemaker surgery. The doctor, seeing my low-dose pain medication in my chart, assumed that I was downplaying the amount that I was on, that I must be a drug addict, and refused to provide me with pain medication during my recovery from surgery. That is just cruel. 

It’s demeaning. It’s wrong. It’s pathetic that chronic pain patients are treated this way.¬†

Now, I am not denying that there are some people who abuse prescription pain medicine, but it is not fair to make those of us who desperately need, and are responsible with, our pain medication suffer. 

So as you can see, I’m furious (sorry for the long rant, by the way!). But I am also sad; I’m sad that people are treated this way, and I am sad that I am back at this place where I need to deal with this. When I got off OxyContin 7 months ago I swore that I would never again take something higher than a schedule III, it was too distressing to have to deal with all of this crap. Yet here I am again; once more I’m running all over town looking for meds, feeling angry and demeaned and mistreated.¬†

It’s not fair, and it¬†sucks.¬†

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Things that suck after divorce: part 1

I’m making this a part 1 because while I don’t have any more things for the list at the moment, I am certain I will find some sooner or later.

1. Bridal showers- I have one to go to tomorrow; and while I am very happy for my dear friend who is getting married, I can’t help but feel sad. I never got a bridal shower. I never got a real wedding. I never got the marriage I wanted either, for that matter.
2. Bridal shower shopping – I never got many gifts either, beyond a few bucks from family members who didn’t get the memo. I made a registry once, just for the fun of it, knowing I wouldn’t be needing it any time soon (That was depressing, and I was still married then). So as I shopped for a gift for my friend (yes, I majorly procrastinated, get over it) I found myself walking through the store noting things my ex would have liked, or things I liked that he would have hated.
3. Weddings – (self explanatory, right?). My friends is coming up, and while I promised her I would go…I’m secretly dreading it. I think may cry, and there will be a ton of other people (from my past) there that I do not want to talk to, let alone lose my shit in front of. ūüė¶

I feel like I want to scream at her “don’t do it!” and “it won’t be like you think”. I’m so jaded, and I hate that.

I’m just sad.

Just when I think I’m getting better, something hits me and I am so overwhelmingly sad again.

Confession: sometimes late at night I put my wedding rings on and wear them for a little while.

I miss my husband (or at least who he was before the slide into darkness happened). I miss being married. I miss the weight of the rings on my finger. I miss coming home and him being there. I miss hanging out with him. I miss using the word “husband” when talking about him…I hate this term “ex”.

I saw him a couple of weeks ago; I offered to help him out with something. So we were sitting and waiting, and I mentioned my pacemaker surgery. He started off being mean with a below the belt comment about my “new boyfriend” holding my hand during surgery, to which I replied “I don’t have a new boyfriend, I don’t need one”. Then he teased me, just like he used to, about me just needing my mommy to take care of me. I said “oh I definitely need my mommy”, and he laughed and told me I’m adorable. Just like he used to.

I miss that.

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Beautiful

Don’t tell me I’m beautiful. I have already heard that word rubbed raw across the flesh of so many girls before me. Thrown at them like rocks that beat the skin of those we don’t understand. “You are beautiful” we yell with such contempt. “God damnit, why won’t you just believe me, you’re beautiful!” It’s not a compliment. It is a victory march of your own self sacrifice. “You’re beautiful” we say through gritted teeth. “You’re beautiful we spit out through tears, looking at a reflection we hate. “You’re beautiful” we say holding a body that has never felt the arms of another. “You’re beautiful”. Don’t tell me I’m beautiful. A word like that floats on the surface, give me something with depth. Tell me I’m intelligent. Tell me I’m courageous. Tell me that when I laugh the whole world smiles. Tell me that my voice is sweeter than strawberries. Remind me that my hands have helped flowers grow, painted the ocean, and captured the sky in my phone. Assure me that with a mind like mine, I can change the world. Don’t tell me I’m beautiful. I don’t really care if it’s true. I’ve spent years trying to convince myself that beauty goes through and through. Don’t tell me I’m beautiful. I’ve felt the word splatter against me enough for a lifetime. I am better than the “beautiful” that slips from your lips. I am the ocean, 36,000 feet deep. There are parts of me you have never seen. I am outer space, infinite in your search. I am not simply “beautiful”. I am a fucking masterpiece. — in known

Art by Alex Kanevsky

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You are so much more than your “identity”

“If you really pay loving attention when you are stripped of it all – your job or avocation, your ability to finance your own life, your ability to move and think, your ability to have relationships in the same way – when you are stripped of it all – in that roaring silence you get to your core. And you find out you are so much more than any of those identities and you can never be broken. Never.”– an anonymous Chronic Lyme Disease sufferer ‚̧

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Post surgical update!

Well it’s official,¬†I have a pacemaker!¬†(If you’re wondering why I have a pacemaker, read¬†here)¬†

I must say, I’m slightly unhappy with the stupid thing at the moment, but I’m sure I will forgive it eventually.¬†

So here is a picture, if it looks rather unpleasant…well that’s because¬†it is.¬†

 IMG_4275-0.JPG

According to the doctor this morning this looks “beautiful”, and the device is exactly where it should be (they put it in yesterday, sent me home, and then made me come to the doctors office this morning for an x-ray to make sure it hadn’t moved overnight)….which is a damn good thing! If it wasn’t where it should be we would be scheduling¬†another surgery¬†to put it BACK!

All went according to plan…except the fact that I was awake and feeling just about the entire surgery!¬†Yep, you read that right. I don’t know if you’ve ever heard of “conscious sedation”, I hadn’t really until yesterday, but basically they give you enough anti-anxiety and pain medication that you don’t feel much and don’t care that you’re awake during surgery, the nurse told me that most people take a nap.¬†¬†Well, apparently I am not “most people” (we already knew that, didn’t we?!). I apparently require higher doses of medication than most people, and metabolize medication faster too…so they kept giving me more and more and it wasn’t doing much and never lasted more than a minute or two. It got to the point where the doctor (who was being a complete ass and ignoring how much pain I was in, in favor of his political debate with the anesthesiologist) did not want to give me anymore, and later implied that he thought I must be abusing my regular pain medication in order to have built up such a tolerance!

He also refused to give me anything else for pain for the better part of the day as I sat in the hospital for “observation” (code word for “stick her in a corner and ignore her except to make sure she doesn’t die”) **Nurses, don’t shoot me! I know it’s not you that does this, it’s the doctors!** So I sat there, in tons of pain, for hours until I finally got to go home. The doctor told me to just take my regular pain medication when I got home, even though I explained to him that there was no way it would be strong enough (it’s been barely relieving my pain from lyme lately, let alone this acute pain from the trauma of surgery!). He told me that all I should need would be Tylenol, and gave me a lecture on the dangers of getting addicted to opiates! So I threatened to call his office and demand a prescription when what I had at home didn’t work, and he said “ok, you do that” (with an attitude, naturally!).¬†

So I got home, and took double doses of my regular pain medication for the rest of the day…needless to say, I was right, it didn’t do a damn thing. I barely slept, due to having to sit/lay on my back (very painful because of my bad back) to avoid moving my left arm or laying in a position that hurt, and was still in tons of pain when I got up this morning.¬†

Luckily for me, I had a follow up appointment today! I thought this would be with the doctor (and I was sooo nervous about it after yesterday!), but it wasn’t, it was with my favorite nurse practitioner who always listens and understands! She said the way I was treated yesterday was ridiculous, and that I should not have had to go through that; she said that my incision and device placement look awesome, and promised to get me a prescription for better painkillers than what I have. :] ¬†So now I am just waiting for her to call and say that the prescription is ready so that my mom can go get it, have it filled, and I can finally get some pain relief! (HOPEFULLY!)¬†

So, I have learned a couple of very important things from this experience:

1. I will never, ever, see that doctor again unless absolutely necessary (and it will be necessary, but not for many years until I need the battery changed)

2. I will never,¬†ever,¬†EVER, agree to “conscious sedation” again in my entire life!

3. If I encounter a situation like this in the future, I will know to tell the doctor that I require much higher doses of medication than the average person does (not looking forward to explaining that, so let’s hope it never happens!)

Now I can just focus on healing..thank goodness! I am not noticing any symptom relief yet, since I am still having palpitations…but the nurse practitioner says it is normal to have increased palpitations after surgery, and that the settings on the device will need to be adjusted to fit my needs once they observe what my heart is doing (I will have that appointment a month from now).

I am so glad that’s over!¬†¬†

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Lyme Disease- at least it isn’t cancer

“Lyme disease- at least it isn’t cancer”

This article has been circulating on the internet lately..and while it totally hits home with me I don’t know if I have the balls to post it on my Facebook page. I’m thinking on it. So I’ll post it here instead, because you guys will “get it”. ūüôā

I can’t tell you how many times in the years and years I have been ill I have wished for some test to come back and say I have cancer. I even got strange test results once, that turned out to just mean I was deficient in vitamin b12, but the doctor didn’t tell me that, so in my mad googling I came across something that said it could indicate cancer…and I was excited. That just seemed so much easier to deal with than “fibromyalgia”, or Lyme disease (I just didn’t know that’s what it was back then).

When you have cancer there is no questioning whether it’s a “false positive”, there’s no grey area, you either have it or you don’t, people understand cancer, no one judges cancer patients for being sick all the time, there’s an answer for cancer (even if it’s an answer that really really sucks), cancer is never “all in your head”.

I still find myself thinking that sometimes…so in very glad that this woman was brave enough to write this article and that it is getting the kind of attention it has been.

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I’m tired.

I’m so tired.

I’m tired of being sick
I’m tired of worrying about being sick
I’m tired of the pain
I’m tired of feeling like a lost cause
I’m tired of being tired
I’m tired of pretending I’m ok
I’m tired of watching my friends be sick
I’m tired of not being able to help them
I’m tired of feeling like I have to figure this out all by myself
I’m tired of spending money on crap that doesn’t help
I’m tired of nothing helping
I’m tired of dragging myself through work everyday
I’m tired of not sleeping
I’m tired of that pain pill feeling
I’m just tired of it all.

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Elephant Journal has done it again…

Elephant Journal- Don’t Miss Your Soulmate Flags

“I now define ‚Äúsoul mate‚ÄĚ as a soul with whom I have had so many meaningful encounters in so many other lifetimes and dimensions, that I feel I know them almost instantly upon meeting them again. They feel so familiar, like family, like instant friends. We can play just about any role for each other too: friend, lover, child, grandchild.”

This has happened to me several times recently, and I am so deeply thankful for those dear friends. They always seem to come into my life exactly when I need them to. For some of them I can even pinpoint the exact moment when I realized the “flag” that told me we were connected in some way. ‚̧

“The ones that are heart breaking, though, are the ones where timing is an issue. We meet them as planned, we experience the flag and know it is important, but we have made past decisions that prevent us from being lovers.”

This has been on my mind lately, as I find myself in a situation with someone who I have experienced repeated flags with over many years, but timing has always been an issue. We shall see if this is the flag that brings us together or not!

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