I ran out of pain pills last night. I took my last one at 2 am, with fingers crossed and divine pleadings for what lied ahead. I knew full well that if something were to go wrong tomorrow between the doctor or the pharmacist or something logistically silly that I have no control over, then it was going to be a very bad day. All it takes is a pharmacist who decides that it’s too early for your prescription to be filled, or decides they need the prescription in writing or says that only if it rains tomorrow will you be able to get your pills. Every time I pick up the phone to talk to a pharmacist, check on a prescription, call something in…my heart pounds. It’s a true battle. Seriously. If I didn’t get the pills by tomorrow I’d be positively out. Dry. And I’m years beyond the point of something like tylenol or advil being any kind of effective. The sad truth is that if a 200 pound man took the pill cocktail that I do everyday, he’d have a hard time functioning. If it sounds like I’m bragging I’m not. It’s just the truth. I’ve been trying to get my pills since last Friday. If I don’t get them tomorrow, on top of the pain there would be bad withdrawal effects. Icing on the cake.
Bright and early this morning I called the doctors office to make sure they received the authorization form. They informed me that they received it and authorized it on Friday. Last Friday. Bad news. That means a pharmacist decided not to fill it for whatever reason. And now the state of my well being, my comfort, my ability to function and sleep, is resting on the shoulders of someone I don’t know at all, and whatever he or she decides is the appropriate day to give a sick girl her pills. But I am just one of many. I’m sure they’ve heard a lot of stories. A lot of abusers. Addicts. Maybe to the pharmacists we’re all addicts until proven sick. “Your pain medicine will be available to pick up tomorrow.” I can tell by the stern urgency in her voice, there is no talking her into giving them to me a day early. A day earlier than the arbitrary Thursday that someone decided was the absolute appropriate day for Mary to get her pills. I tell her thank you. I talk to her like she’s a cop. Make her feel powerful and thank her graciously. I hang up the phone and know that the next 24 hours are going to be tough. I’m not going to sleep tonight. It’s 10 am. The pharmacy opens at 8 tomorrow. 22 hours to go.
I often try to calculate how many hours I’ve spent in line at Walgreens. On the phone with Walgreens. On hold for my doctor. On the phone with insurance. (Back in the day when I had insurance.) Acting as a mediator between two institutions which seem to often…miss one another. It’s probably better I don’t know. I don’t count the thousands of dollars out of my moms savings that go towards prescriptions. Inevitably the numbers would be high and sad and dissapointing. What I really need to do is be thankful that for now, there are pills out there to help me and for now, we have the money to buy them. Except today. Today was different.
Today was an insane reminder of what my body feels like in its natural state- which is fucking terrible. I’m sorry about the F word, but I really desired emphasis there. It’s been awful. Of course part of the feeling is withdrawal..but mostly it was just that widespread pain and awful, burning, firey legs. Under my fingernails hurt. My gums and teeth hurt. My body felt like a high voltage electric fence–exuding pain frequencies. It was pretty terrible. At the same time there was light at the end of the tunnel; I knew that by tomorrow I’d get relief. So it was only a day and I looked in the mirror and said for God’s sake Mary, I can go a day without! 24 little hours. And of course I could..it wasn’t going to kill me.Mostly it was a huge reminder of what life without pain medicine would be like, and it was really, really terrible. I know I sound like an addict- but I don’t get high off of my pain medicine. I take one at a time, and I don’t feel euphoric after. I just feel relief. But to outsiders I know what it looks like. And I can understand.
I fully prepared myself for another night up by myself, counting down the hours until I’d get my hands on something to take away the pain. A bath provides about 20 minutes of relief. But once you step out, it’s over. It all comes back. I wish I knew what was going on in my body. It’s like it’s being held hostage by an invisible monster. I realize that pain is not the natural state of the body. It wasn’t built to exist this way. I constantly think of a line in Mark Nepo’s book where he says “Pain is just a sign that something needs to change.” I wonder what needs changing in my life. I try to pay attention. I try to find the meaning in all of it. I do a lot of examining. I know examination is one of the benefits of my situation. It’s hard to truly examine life with all of our distractions and obligations- it’s hard to unplug from our devices. There is rarely quiet in the world. It’s up to us to find it.
I must have a pain killer guardian angel, because when my brother-in-law came home from work close to midnight I told him about my all-nighter plan and the insane state of my body. He happily informed me he had some leftover pain medicine from his knee surgery in his truck. HALLELUJAH! The pain was going to go away now. I was going to get some sleep afterall. He saved me.
Sadly I know that it won’t be long before I run into this problem again. This logistical, bureaucratic, prescription nightmare is basically constant and I know that all you chronic sickleys out there have to deal with it too. And it’s not the pharmacists fault. It’s not the doctors fault. It’s partially a broken system, it’s partially the fact that drug addicts have tightened the reigns so much on oversight of certain drugs that it’s become hell for people who actually are just trying to feel better. Last week it took countless phone calls and ten days to get my anti-biotics filled. Ten. I could bore you with the details but I won’t because we all deserve better!
It’s 2:30 am but I’m awake because 1. This is my quiet time. 2. It’s really nice to be alive and not feel the pain that I’ve been feeling all day. 3. When your soul wants to write, your soul wants to write. I have to be honest; all of this scares the shit out of me. I don’t want to have to take pills the rest of my life. I don’t like that I am dependent on medicine to be functional. But the hard truth is that the alternative is just not doable, or worth it to me. I couldn’t endure that type of pain everyday and be a solid human being. I think, eventually, it would just break me. It scares me because while I feel like I’m getting old, in the grand scheme of things I am only 28. I want to get married one day. I want to have kids. I don’t want my liver to explode. But there’s not really a way those things are possible for me right now and I trust that I am where I’m supposed to be. I really do. Being on my own has been immensely educational. In a way it’s made me stronger. Smarter. More self reliant. You sort of learn how to make yourself happy, and there is real value in that. I heard somewhere that 40 is the new 30, so maybe I don’t need to worry about these things just yet. I know the focus needs to be on getting well. It also needs to be on acceptance and finding my heart of joy, and writing, even when things are grey. I want to feel completely whole before I bring in anyone else to my life, and there are still a few pieces I’m looking for.
Anyway, now that the pain has subsided, I should try to find my way into the world of sleep. I day dream all the time about a life without sickness, without pills, without entitled pharmacists dictating a life. But the truth is, even in my dreams at night, I am looking for pills. Taking pills. Spilling pills. Pleading with pharmacists. When I wake up, its because of pain. I take a pill of almost every color, and then I sit and wait. Every day the same. The life of a sick kid.
It’s better than it sounds.
Party On Wayne!!!
Health, Happiness, Pills
FibroM.E.-Awesome 
If you could not afford a Doctor and drugs (were turned away), but don’t want to feel pain, what would you do? Subtract your family from you life. In their place, insert a few people more like you. Take away the abilities to hold a job (you can relate to this), welcome to a life on the streets and crippling effects addiction.The Doctor who works in the lab to make your pills may also be an addict. So might be the ones who are working to regulate laws and make it less expensive and easier for you to get them.
I guess my only point: Addict is not the same word as either thief or criminal.
Still love your blog
x Tenley
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I think you are wrong here and insensitive. Drug addicts are just trying to feel better, too. What you are describing is withdrawal. Being an addict simply means that without the drug, you feel pain and cannot function. Not all drug addicts are not out there robbing pharmacies or hurting others. They were somehow simply given a drug, and then when they went without it the result was serious pain. Addiction can be a disease. As in, it was not chosen or wanted, it is not a some weird thing in our brain where the couch is talking to us, it simply means without this chemical any longer we now feel intense pain, much as you are describing.
Perhaps you could find out a bit more about addiction and why it occurs before blaming (sometimes) highly-functioning people for you being forced to wait in line. Have you ever thought about what your life would be like without the pharmacy companies, pharmacies, and drugs that allow you to not feel constant pain? How about a thank you? And be goddamn lucky you aren’t an addict. Addiction doesn’t discriminate. Sick people get it, too. Now you have a good idea what hell is like.
Stay strong, Mary. You can do it.
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What I gathered is that Mary has a prescribed drug that her pharmacy is withholding there’s a window or time-frame they maybe by law have to wait until she can fill it. They’re deemed controlled substances usually. I have the same issue with medications that aren’t pain meds; they are now controlled substances because people have abused the medications and used them inappropriately. I think what she’s talking about and how some medical professionals lumps everyone into a group and see us as “drug seekers.” She’s a patient under a doctor’s care though…or many doctors actually. She was prescribed a medication. I don’t think she should take another person’s medication, but then she’s being open and honest, while your responding as anonymous. I live in Dayton and most of Ohio is seeing a rise in deaths by opioid overdose. Our police carry Narcan on their person in case they have a case of overdose; it’s become an epidemic here. I imagine most were prescribed the opioid after surgery or an accident. They felt better, liked the effects, but then when it wasn’t prescribed again, they went to other people to try to get more medication. I have a friend who has frequent surgeries, for instance, because she has a bone disorder. She gets texts from “friends” asking if she has some of her pain medication left. I think that’s what most people think of when they think of “drug seeker.” Those people are not taking the medication as a doctor prescribed, nor do they have a prescription. I don’t think Mary is insensitive though to people who are addicts. Quite the reverse. I think she’s exploring that in this blog post. I love her honesty and bravery every time she sits down to write. Mary, you should join Jerry Jenkins’ writer’s guild. I can tell you have a book inside of you for all of us who battle chronic illness. (((Hugs)))
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Your current write-up features confirmed helpful to us. It’s extremely helpful and you’re naturally really educated in this field. You get popped my own eye to be able to various opinion of this particular subject together with intriguing, notable and sound written content.
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A pharmacy CANNOT say you cannot have your medication. Weather it be early or not, It is up to your Dr & if you have insurance, the pharmacy insurance company. Ive worked at a pharmacy, and we were not aloud to hold a prescription because we felt it was too soon, it wasnt up to us.
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I fucking hate pharmacists. This used to happen to me ALL THE FREAKING TIME. I finally found a pharmacy where they’re not so much more compassionate, but they break when I get pissed. I yell and they’re like FINE we’ll call your doctor, omg! What a bitch! But hey, whatever works.
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i hope things get better for you. i’m debating if certain symptoms are worth trying to get them taken care of since its where tylenol isn’t touching the pain anymore. good luck and feel better soon.
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I wish you didn’t have to go through all of this. You are definitely a stronger woman than me – I had to take clonazepam to keep from totally losing it when I had to go through a withdrawal off of my pain pills. Now I use Sam’s Club and they actually understand that I can’t function without my pills. They even tell me about meds to ask my dr about and all of my meds are way cheaper. To top it off I see a new dr, a rheum, and he prescribes a big bottle of them, with refills *happy dance*, so I don’t go through the battles and withdrawal days anymore. I sincerely wish the same for you. In the meantime, I’m glad that I’m not alone in rattling when I walk. :)
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I want to start a service for you and people like you: think foodtruck, but dispensing pills instead of carnitas. I think it would do well in Orange County
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WINNING! I like it…do it Colbs!
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I am sorry, but your writing is healing you in ways you don’t know yet. I believe it is a travesty for you or anyone who needs medications to go without even for a second. I don’t read what you write and go on with my day. I read this and it confirms what’s been going on in my spirit for a while there needs to be something done. Health care should not elude the ones that need it most.
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great post. Thanks for sharing all this. Sorry the healthcare system in this country is so crappy! Hoping you get your meds soon!
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So sorry that you have had to go through that. It really does suck being dependent of medications just to live any sort of a life. And it is something which people who are not in this situation simply can’t grasp. I have tried explaining it to work mates before, the fact that if I don’t get my meds then I will not be able to work (the roster kept getting screwed about with making it very hard to get drs appointments) but it is just such an alien concept to them. The closest they get to it is taking the pill each morning…but it is hardly the end of the world if you miss a day or two on that…
I am just grateful that my sister is about to start paying me rent to live in my house for a while whilst I stay with my parents and look for a smaller, more manageable place to live. It will mean that I wont have to worry so much about work, and cooking, and cleaning, etc, so hopefully I can start to recover from the crash I’m in at the moment.
Anyway, I really hope that your drs and pharmacy get their act together soon so you can get some proper relief
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Chronic pain truly is insufferable. Glad your brother-in-law had something on hand – and that it actually did the trick!
If you have a Sam’s Club near you, they have the lowest prices for prescriptions (that I have found). And you do NOT have to be a member. At least, certain states have that law. Check with yours. Some of my meds are crazy expensive but I come out paying $2-something each (this is after Medicare picks up their portion), but at Walgreens my payment was around $20 each. HUGE difference. Adds up quickly, as you know.
Kudos to you for keeping your chin up! You must have some great doctors. They make such a difference. I drive 8.5 hours to keep mine (moved away, to an area where specialists are few and FAAAAR between) even though I could see one 3.5 hours away (because the closer one just doesn’t cut it).
As far as your dreams for a family – you’re right! 40 is the new 30! Hey, doctors didn’t think I could get pregnant due to my medical condition and kept me on birth control just in case, because if I did my health was “too precarious” to make it. Well, not only did I get pregnant (nearly 10 years after being married) but I carried the baby almost to term – every few weeks was another milestone, they were sure I would miscarry – and now he is 2 and a half. :) You just never know where/who/what/when life will take you! It’s not always easy as we know, but there are definitely very HIGH high points in our lives, all the same.
Christina
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I don’t know if you have a Costco near you-but I read an interesting article in their magazine a couple of months ago and was really impressed with the pricing and the services they can provide.
Prayers for you Mary!
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Empathy…..totally. Every word of it. :( Hang in there, Mary.
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Yes, I certainly understand what you mean-about all of it. I recently had to switch pain management drs, after I told the first one that “My pain isn’t being managed”, and he said “It wouldn’t hurt my feelings if you went somewhere else”. But for the new place to take me, I had to get a letter stating that I will no longer be receiving any pain meds from the old dr. (I was afraid that the new dr. would find a reason not to take me.) Or they wouldn’t be able to take me soon enough. Then, I was afraid that the new dr. would change my meds, and I’ve basically tried them all and always come back to the same ones. I just built up tolerance to it and had to have it raised. The new dr. is working out well, thank God!
A few years ago, my dr. at that time was out of town when a blizzard hit and he couldn’t get back to write my new prescription. We were all snowed in, and I went thru withdrawals of 2 different pain meds. It was awful! The pain, the withdrawals, the sickness (but I lost 10 pounds that week). lol
I worry about it every month-I share that monthly worry with a very good friend of mine, who is in the same boat. It works out eventually, but the time without the meds-I’m useless. I have to have them to function. The pain is too great.
I’m on 13 different drugs. 3 are for pain. I still have pain but the pills usually put it under a 7 or 8. It’s rare that it’s lower than that. But we still have to go on.
Well, I’ve gone on and on so I’ll stop now. Thank you Mary for another wonderful post. I hope the rx problem eases up so you don’t have to have that added stress!
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Damn junkies! I had to drive 3 counties away one night to buy some damn Sudafed for my pregnant wife because MO is the meth capital of the world and many counties require a prescription now, including mine. Good luck!
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What about finding another pharmacy? I hate Walgreens as well but I’m lucky as there are 2 other pharmacies nearer to me so I have a choice about where I go. I have been going to the CVS downtown which is the closest to me but recently there was a complete change of staff. There is only one person there now that I know personally. Actually I knew most of them only over the phone. I don’t usually go to the pharmacy to pick-up my meds.
Getting used to having new people fill my prescriptions on the schedule that they need to be filled has been a pain. These people don’t understand that I set my med boxes up a week at a time and even though the prescription doesn’t run out till Friday I’m calling on Sunday because I won’t remember to call later in the week.
CVS now has a website where you can put in all you prescription medications and they will send you a reminder that they are ready to fill. It does make things easier. I unfortunately changed my prescription insurance coverage at the beginning of the year and now am finding that some of the stuff I take I have to go through getting prior authorizations all over for. That alone is hours on the phone with the insurance company, doctor and pharmacy. I take something to help me sleep that isn’t covered and I’ve gotten 2 letters saying I need to find something else to take or request an expedited hearing to get it. I did that last month and got a phone all telling me everything was all set then I get a letter on Monday saying it was denied. WTF?
So today I’ve decided to make that phone call again and spend hours getting this straightened out. I can’t find the paper I wrote the name of the person who told me it was fine on and the authorization number on. Sucks for me.
I hope you get your medications OK and that next month there won’t be problems getting them.
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