When I first came up with this title and subject matter all I could think of was “Bills bills bills” by Destinys Child (flash back to high school). Then I decided to replace some lyrics from the song and have been singing around the house “you can take your pills, can take your little blue pills, can take your giant horse pills and then maybe we can chill”. Cheesy I know, but I love making songs out of everything. My mom used to harass me as a kid about my school work and tell me “if you studied everything as much as you memorize your songs you would have straight As!” But back to pills! Medication is always a fun subject but one that’s extremely important to bring up for anyone really, not just those that have chronic illness.
When prescribed a medication for any condition, cold, etc… do your research. Do not just trust your doctor to give you the medication that will work for you. Most doctors have a standard set of brands they will use for all of their patients without a second thought to that persons specific symptoms for their medical condition, and sometimes without consideration to other medications you are already on! Let’s say you have been diagnosed with rheumatoid arthritis. The first go to medication is methotrexate. They tell you it can be hard on your body but it is the best treatment for RA and most people use it. What they don’t tell you is that it is a chemotherapy drug. Of course it’s going to be hard on your body! More to the point they don’t tell you that there are serious long term consequences for fertility, developing cancers and more for taking this medication. These could be risks you are not willing to take. Every person is different. We all have certain risks we are willing to take with medication, so educate yourself on your medication. When you educate yourself on your medications don’t just look at the symptoms either. We all take numerous amounts of drugs, and just one of them interacts oddly with another, who knows what can happen! Always check for drug interactions. This is all information you can find instantly by googling just the drug, but there’s more you can find out. Most drugs after they have been out for a while end up being sued for all sorts of things. Some of them are serous and effect a large population and some are not. Try and look up if your medication has been taken to court, for what, and the result. Education yourself, and determine what you are willing to ingest before you start any treatment.
We are programmed as a society to trust what our doctors diagnosis us with and what he decides to give us for treatment. Every person I have ever met with chronic illness knows better, and unfortunately they know better because they learned the hard way (to the point of my blog, I want to prevent anyone dealing with illness from learning the hard way). Do not trust your doctor. As I have said in previous posts, get a second or 3rd opinion before knowing/getting your diagnosis… well, the same goes for medications. Get a second or third opinion. Find support groups of people with your illness, and see what they have dealt with for their various treatments and what has worked best for them. However, this is not to say what worked best for one person will work best for another. We are all different and all have various reactions to medications. There will always be some sort of trial and error, but when you get all your facts straight before diving into a new drug, you can at least know with confidence what you are getting into and you will know what to look for if things do not go well for the medication. We have all heard the ads on TV with the various popular medications out there. You know the end of the commercial where the speaker all of a sudden starts speaking at one thousand words per second and all you can hear at the end is “may cause breathing problems and DEATH”. There is a reason they have to say that at the end…because it has happened! That’s not to say it’s going to happen to you, in fact it’s highly unlikely. It’s all the OTHER side effects you need to pay attention to, and I don’t mean things like breaking out in hives from an allergic reaction (although also important!). Pay attention to the things like pain, stiffness, hot flashes, personalty changes, sleep deprivation, depression and the lists can go on forever. These symptoms from medications can sneak up on you and you won’t even realize that is happening. I cannot count the number of times I have had something weird going on that is unexplained for months and months only to miraculously come to the realization that it may be that new medication I started several months ago… “hmmm, let’s see what happens when I stop taking it”, and voila! I am back to normal.
Why does this keep happening??? WELL for one, with chronic illness, something is always going wrong right? and when that something goes wrong the first thing we get is a new Rx to the rescue… sigh.. Secondly..well… Something is always going wrong again! I say this because it’s often difficult for us to tell what is going wrong because of our disease and what is going wrong because of our medications. In fact this is probably one of our biggest struggles. We take soooo many meds and have sooo many issues and see soooo many doctors (who can’t keep track of it all), that it is incredibly tough to differentiate what is causing what.
So what do you do after you to your research on all of your medications? Journal. The dreaded medical journals. This part is a frustration of mine. It is so hard to keep up with, for one. I barely remember to write anything down as it is! I think my biggest frustration with keeping a medical journal is that we HAVE to do it, to keep everyone else in check, and by every else I mean all doctors, ERs, pharmacists, and more. Without this journal the doctor will not remember the last appointment when you came in with a migraine, and now have body aches and be able to determine if they are related. What will happen if you do not journal is your doctor will end up treating you with two separate medications for two separate conditions that are likely tied and he ends up masking the problem rather than solving it. Essentially what I am saying, is that you are your own advocate. Actually screw it, you are your own doctor! Lets face it. When you have chronic illness, you know more than your condition than most doctors. I get so tired of going through my insane medical history when I have to see a new physician and his first response is.. “wow, I haven’t even heard of half of these conditions!” Side note: if you ever hear this, run! Run far and fast! Back to the point, write down everything. Even if it seems insignificant, write it down, because you never know.
Now you have everything written down for your doctor, so you can just hand it over and he will read it to figure out what’s going on right? Hell no! You have to do more work, shock of the century! Start from your last appointment and highlight trends. For example: every wednesday I eat at this one restaurant, and have the same exact meal and that’s when these symptoms are popping up, or my symptoms always seem to be getting worse at night. Trends are what the doctors are looking for. They do not care about ‘one off” situations because that’s exactly what they typically are, one offs. Trends will show them that you are having a consistent problem, you have the data to back it up, and potential cause that can help them determine not only what is going on but what they can DO about it, rather than masking it. Another reason why this is a good routine to have? It will save you time in the doctors office! yay! Anytime you go to the doctor with a symptom, especially if it is not deemed emergent, they will tell you exactly what I just told you. Keep an eye on it for the next couple of months, maybe jot down when it happens and what you were doing,eating,etc. and I’ll see you in 3 months. By the end of that three months, well I never really make it to that three months. I usually end up back in their office before then because the issue has gotten worse, and yes in some cases it has put me in the hospital. Journaling regularly and going to the doctor prepared will save you the time and the grief.
I know journaling symptoms may seem off topic but it’s not. The first thing I do when starting a new medication is I write the date I started the medication. This way I can track any symptomatic changes I am having since starting the medication. As most of you know this can take time. Some medications will work instantly and some can take months to kick in. Keeping track on a regular basis can help you catch any issues from the medication more quickly and hopefully allow you to switch to something better more quickly as well.
These are the basics of dealing with chronic illness and medications. Let’s get real now. Many of us are on a ridiculous amount of pills, injections, patches, gels…you name it, we have been on it. There’s a notion that if you are taking a treatment for something, that it is a cure. Realistically our condition has no cure. It’s difficult to get people to realize that yes I am being treated for something, but there is no cure. What does this mean? Ironically it means exactly what I said earlier about taking lots of medications that just mask symptoms. That’s essentially what our treatments are. We pop pills like candy to cover up everything we are feeling, everything our disease is doing to attack our body in one way or another and as soon as it attacks something new, we take something new. It’s a never ending cycle and I think it’s easy for us to get into a routine of just taking everything as soon as we get it regardless of it’s effects. Not because our doctor told us to, but also because it helps. Even if it hurts us int he long run. Take me for example. One of my symptoms is chronic pain. Many of us understand this. For years I had been taking the usual suspects, to the point that my body has become so immune to pain medications, that if I have to go into the hospital for a severe kidney stone, they can give me demerol and it just doesn’t do anything for me anymore. Not just that, but I have developed an allergy to morphine. Why? because I had been treated with it so much. This is a major problem. Luckily I do what I can to stay out of the hospital and average maybe 3 stays a year but when it comes to my day to day treatments, I’m screwed. I have tried everything and my body either over reacts or under reacts. It took a lot of trial and error to find pain medications that worked to being with. Pain doctors start giving you medications that are used for other purposes like depression or seizure medications because apparently they worked to treat pain for other people. Definitely did not work for me and in most cases they made things worse for me. My pain specialist has now narrowed down 2 meds I can take regularly. 1 for daily use, and 1 for strictly bad days. The regular use (tramadol) works enough to get me through a day. It keeps me at a 4-5 pain level daily. I can deal with that. I have been trained after years and years to just deal with it, it’s my only option. Drug number 2 (vicodin) is where things get tough. It’s just for my bad days but even when I have to take it, I can’t function so unless I will be staying home I am most likely not going to take it. Then there’s a third option. The hospital. And we all know I will do anything not to go there to be treated like a drug seeker, so I don’t. My fear with this is that this is just going to progress, and as it does, what will I be able to do? There’s not an answer right now. All I can do now is hope for that miracle drug I overheard on NPR which is supposed to treat pain at the strength of something like vicodin, but have no side effects. It’s just being tested so it will most likely be 10 years if it is ever allowed. I’ll keep hoping for these technologies to unfold.
Now, I use pain medication as an example because I think it’s one we can all relate to, and at the same time it’s a sensitive subject. It’s one most of us do not want to talk about because we have this constant fear of the accusations we will receive for what we take and the frequency with which we take them. Well don’t feel that way. It’s our reality, and maybe most people don’t get it, but to all of my chronnies out there, I know you do. It’s our treatment, just another medication to get through the day. On the other hand, to be honest my tramadol treatment scares me the most because of the daily use. I am terrified right now that my body will not let me get off of it. I seriously believe that I would go through severe withdrawal, and that scares me more than anything. It wouldn’t be the first time either. I have been through withdrawal symptoms for other medications, that were not pain meds. I know eventually either way I will become immune to the treatment and will have to move to something else, if there is anything. It will take mental and physical preparation when that time comes.
As I said before, It’s not just pain medications though, it’s all treatments. All we can do is hope there will always be another option, and that our bodies accept it, and our medications we are already taking along with it do not have any adverse effects. It’s bad enough that we have to worry about starting new medications and waiting to see how they will effect us physically or mentally, but to have to prepare to stop a medication too? Isn’t this all just getting exhausting? Our treatments at times feel like they are worse than the actual disease. Even just getting through finding the right treatment. It’s all very unnerving. Here we are supposed to be taking something to make us feel better and it ends up doing just the opposite. We don’t have a choice though do we? So we keep trucking and we take our doctors advice and try them all. Well, we do have a choice. Suffer through treatment or suffer through disease, and sometimes I feel like I’d rather just suffer through my disease, but it’s just not a viable option.
So here we are again… pills pills pills. Actually I should say pills, injections, pills, heat pads, pills, creams, pills, tens units, pills, braces, pills and more! We have tried it all haven’t we? We will continue to try it all too, just to get that moment of relief. Remember, treatments can you hurt you just as much as your disease at times. Educate yourself, question your doctors, get opinions, journal, and do whatever you can to take care of your self. Be your own advocate. You are all you have and you know yourself better than anyone. In the mean time we will continue to fight for that cure we hope for every day! Here’s to a little relief for us all tonight! Drink up! ;o)
~Just a Regular Sick Girl