Sunday, May 4, 2014

On Drugs...Oh I Mean Medications.

Growing up it was honestly my biggest fear that I would end up on drugs or medications for the rest of my life. It's not important why I have such strong convictions in this area for the purposes of this blog. Some of you know why I'm so strongly convicted this way and I would appreciate you not telling why.

And when I say my biggest fear I mean, I would rarely take Tylenol and when I started having to take Midol frequently for my horrible, horrible periods I really didn't like taking even that.

I do not like drugs at all. Not one bit. I swore that I would treat myself naturally for everything for the rest of my life and use the chiropractor, acupuncture, and Physical Therapy to fix anything that ever ailed me.

That was, of course, before all of my health stuff started happening and I was doomed for a lifetime of drugs, er, uh, medications for the rest of my life.

The Meriam-Webster Dictionary defines drugs as "an illegal and often harmful substance that people take for pleasure."

The Meriam-Webster Dictionary defines medication as "a substance used in treating or relieving pain."

I am VERY sensitive to what people say to me in terms of my medication use. I am VERY sensitive when people tell me that I am a drug addict when they find out that I am on long term narcotics and benzodiazepenes among other habit forming drugs. I am VERY sensitive when people get on my support page and tell me that I am taking too many "drugs" and that I'm a typical American that believes a pill will fix anything and that if I just ate whole foods I would be healthy again and not need to take any drugs. I'm sensitive there for 2 reasons. One, I never asked for a life filled with drugs. It is literally my worst nightmare to be on the amount of drugs and the kind of drugs I am. Secondly, I'm a dietetics graduate student graduating soon, don't you think I know the benefit of whole foods, ya know for the people who eat, since I can't eat and am tube fed it's just not that easy for me.

I'm also VERY, VERY sensitive to all these doctors that are prescribing me all these drugs and not looking at the whole picture and then making dumb ass comments to me down the road that don't even make sense and/or are not helpful comments for my situation. When you have all specialists and they don't communicate with each other it's impossible to figure out why drug x is affecting me in situation y.

Before I started taking any of these drugs I had been stable at 117 pounds for 6 or 7 years. Since I've been on drugs I have gone all the way up to 210 pounds. Then when I got my feeding tube in October I had dropped all the way down to 160 again and now I'm back up to 194 because since December I've gained 2-3 pounds every week. I've had 2 doctors, 3 nurses, and 2 dietitians working on this. But it doesn't stop all the other doctors from telling me that if I lost some weight my symptoms would go away. First, that's an outright lie, because all these symptoms that would "go away" if I was in a normal weight range again I had when I weighed 117 pounds, that's why I was put on these drugs in the first place.

I also have issues with fatigue. And they tell me again, if you can sleep for 8 hours a night and not take naps during the day all these symptoms will go away, and oh yeah, don't drive when you're tired...haha. I have an energy disorder I'm always tired. This is again crap, because again before I had the drugs I still had the same symptoms.

And now because I get upset sometimes at doctors offices I have been sent to a psychologist who has diagnosed me with anxiety and depression and I now need to be on drugs for both of those too. And I don't believe I have true anxiety and depression. Especially since  anxiety is a symptom of both dysautonomia and mitochondrial disease.

But friends, here is where it gets really interesting. Really interesting. I am currently on 22 medications either daily, weekly, every 5 weeks, or every 3 months. And the most interesting thing in the world is the side effects of these medications.


  • 5 of my 22 medications don't have side effects listed because they are supplements and 1 doesn't have side effects that match these categories listed (Saline, Riboflavin, Peppermint Oil, CoQ10, Creatine, and then Compazine doesn't have the side effects I'm discussing listed.) That leaves 16 medications to evaluate side effects for. 
  • 5 of my medications can cause rapid weight gain (Hydrocodone, Lyrica, Florinef, Baclofen, and Depo-Provera) This equals 31% of my medications causing weight gain.
  • 7 of my medications can cause anxiety (Hydrocodone, Valium, Potassium, Lyrica, Florinef, Mirapex, and Depo-Provera). This equals 44% of my medications causing Anxiety. 
  • 5 of my medications can cause depression (Hydrocodone, LevoCarnatine, Lyrica, Topamax, and Baclofen). This equals 31% of my medications causing depression. 
  • 10 of my medications cause fatigue/tiredness (Hydrocodone, Valium, Linzess, Vitamin D, Lyrica, Topamax, Buspar, Omeprazole, Nadolol, and Remicade). This means 63% of my medications cause fatigue/tiredness. 
  • In addition to all this wonderful data most of the medications also have side effects that match up with my every day symptoms of the chronic conditions I have such as: dizziness, fast heartbeat, joint/muscle pain and weakness, red irritated eyes, loss of balance, confusion, shortness of breath, problems with memory, tingling of hands and feet, general feeling of discomfort or illness, pain, slurred speech, trouble sleeping, twitching, blurred vision, slowing of mental/physical activity, memory problems, difficulty concentrating, and breathing problems. So if these side effects of the medications I'm on are exactly like my every day life and symptoms of my chronic conditions, how am I to know if the medication is making me worse, or better, or neither? If I can't recognize the side effects.
I am so tired of having psych called in on me and being told I have anxiety or depression when, first of all, anxiety is a symptom of 2 of my disorders, not a separate diagnosis, and then come to find out that 44% of my medications could be heightening my anxiety and 31% could be heightening my depression? That just doesn't seem fair?

I am so tired of being told that I need to lose weight when I don't even get suggestions of how to lose weight I'm only told. And I'd really like to hear some suggestions if they would actually listen to me to learn that I'm only on 750 calories of formula and 500 calories of a mocha every day making that 1250 calories total a day. That is no where near what I should be consuming to be gaining weight at 2-3 pounds a week, and it's certainly not something that I'm doing on purpose and not something that I can control. It's obviously a metabolic issue. Please give me a suggestion on how to fix my electron transport chain, please, it would solve so many of my problems.

I'm so tired of being told that I need to work on my sleep hygeine all the time, that it's my fault I'm tired all the time and can't stay awake during the day. Because in addition to having a severe energy disorder that already makes most people that have it take several naps a day, 63% of my medications cause fatigue and tiredness. So my body already doesn't make energy and then 63% of my medications are taking whatever energy I do make and sucking it away because that is what they do. 

All I want is someone to sit back and look at the whole picture. To see me for me and to see what I'm trying to do to stay as healthy as possible. I wish that when a side effect happened then we would stop prescribing a different medication for it, we just fixed the problem first so we didn't have to add another medication. For example, we found out my florinef was depleting my potassium stores, so instead of lowering my potassium dose, we added potassium to my medication list every day. Or I told the psychiatrist I was feeling unmotivated on the anxiety medicine so now she wants to add an anti-depressant on top of it. Why don't we just fix the underlying problem instead of just putting more and more medications on top of it. 

And please for the love of God, trust me that there is no way on the face of the earth that I ever wanted drugs to be part of my life. I am so scared for what my life may hold because I have to be on these kinds of drugs long term. I really hope that I never get addicted. And that is why I am so careful with them now. I set alarms on my phone so I know I can't have anything until the alarm and make sure I pull the perfect amount out and never, ever cheat on anything, even if it's one of the non-habit forming medications. Because I will never be an addict. I know people on the outside may see me as a drug addict, someone who is dependent on so many drugs to make it through today. But I see them as medications. The things that help treat me and relieve my pain so that I can get through some days with as little pain and symptoms as possible. I just wish they had less side effects. So there you have it, my manifesto on drugs, and why I don't like them, and why I think doctors are stupid about them and should talk to each other once in a while to keep the patients best interest in mind so that these crazy interactions aren't happening all the time. But, right now, in my life I have to have all these medications. And even though it's the scariest thing in my life. I've gotta overcome that fear. Because living is much better than being scared to take some meds.

My 6 PM, 2 PM, and 10 PM Meds


My Morning Meds

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