Archive for the ‘Medical’ Category

Dangers of medications

I miss writing—writing about fun and interesting things-not about health or politics. Last week I had a reaction to my medications. It took me about 3 days to get back to earth so to say and another 2 days to get back to clear thought. I’m still dealing with some of the side effects.


Dilantin is a quirky medicine. It has a very narrow therapeutic threshold (I’ve written about this before) and causes several side effects but my problems have always been that it doesn’t play nicely with other medicines. This is why in the past that I took very few medications with Dilantin. I like to know what to expect before it happens but that isn’t always the case—I need to up my game because the pharmacists and doctors haven’t been paying attention.


One medication that I take for my stomach and colon (let’s call it med A) increases the effects of another medication I am taking for my urticaria (let’s call that one med B).

So we have med A increasing the effects of med B which in turn increases the effects of Dilantin causing a very dangerous mixture. The effects are minimal as long as the dosages are small but when they are increased it becomes scary because I didn’t know what was going on. I can’t even think when it happens as in draw conclusions.


Anyway, I’m better. I can actually walk and not fall down and I’m not sleeping for 48+ hours at a time. I rearranged my dosage times and left off one of the urticaria doses. It’s working so far. I had to give up driving for a while until this settles down. We will wait and see.


Sometimes we don’t know how our bodies will react to certain medications given that each of us is different. Often we play the game of trial and error until something happens. In my lifetime, I have had at least 4 overdoses and at least 2 underdoses-that is what I can recall at this moment. These were not my fault as in there was nothing I could do to prevent them. The overdoses usually happened because an increase of medication. Sometimes it is hit and miss and misses can have consequences. With the underdoses-we can have changes in the way our bodies metabolize so we have to closely monitor what is happening which usually results in blood tests but they aren’t as simple as checking for blood sugar.


I hope to write about something that is more fun next time. Happy Gardening! 🙂



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What I am about to write is true and personal. For several years I watched my mother lie in agony and pain, and I could do absolutely nothing (or so I believed) about it. I felt helpless. She took the strongest pain killers and yet they seemed to do nothing but do more harm. She suffered from rheumatoid arthritis (among other things) that was so bad the circulation stopped in one of her thumbs and an index finger. They first turned blue and then black. Both had to be amputated. All of her joints were so messed up that she could not sit or stand. Her body reminded me of the old circus freak shows. It is bad to say but it was horrible for her to live through.


I moved back to care for her. The meds that she took caused all sorts of complications and her autoimmune system began fighting itself-that may sound familiar. This was before she had a stroke. I could tell you some of the most grotesque stories but if you know of someone who has suffered like this, then you already know. It caused me great pain to see her like this and to know I was her caregiver and patient advocate and that she depended on me for everything. I couldn’t make things better—it took a toll on me.


I wish I knew then what I know today. Since that time I have cared for other people and watched and learned. I’ve read and discussed things that I never dreamed of back then. What I am about to say is not going to sit well with everyone but this is where reality comes to life—where it meets the pavement so to say.


What if I told you that there is something that would have helped my mom, something that would have given her quality of life-in my opinion-and helped her to live on without the complications? It may have even lengthened her life with less pain and again, with quality of life.


Stigma was a topic in a recent post. We apply that word to things we don’t usually accept. I live with epilepsy which has been stigmatized during my lifetime-less so of late. Hippies of the 60s were unfairly stigmatized as were those who were categorized in this group whether they were hippies or not. Remember, it only takes one’s perspective to categorize someone. Ok, you get the idea.


Some things are acceptable depending on the group of people you are with and some things are never acceptable. I used to think everything was black and white, red or green, purple and yellow, etc. I never thought I could help my mom as each day I watched her face one battle after another and waste away before my eyes. I can’t play the shoulda, coulda, woulda game but there is a chance that I could have helped her.


Welcome to the 21st century where it is not taboo to speak of cannabis oil and treatment with cannabis. Sure, there are people who still believe it is off limits and that it is the devil weed but if you had a child who suffered severe tonic-clonic seizures that were not controlled by any other medication… are you going to tell me you will not try cannabis oil that has been proven to help stop or at least slow down seizure activity in some patients? I would do it in a heartbeat! I would get cannabis oil or cannabis in some form for a child, my mom, anyone who is in my care who needs it. I would not hesitate one bit. Before you leave my post, I would like you to read on.


We have been fed a bunch of malarkey. I believed for a long time that it was a gateway drug. I need to say that there are those individuals who go on to use “heavier” drugs but truth be told, they were headed in that direction any way. It’s the nature of the beast—think addict and you get the idea.


Last year, Georgia passed a law that allowed patients with limited illnesses to possess and use cannabis oil such as a child with uncontrollable epilepsy…HOWEVER, the governor and lawmakers failed to provide a way and means for parents and patients to legally obtain cannabis oil. Ever since then there were certain lawmakers and residents of Georgia that have literally been fighting to get a legal way to get help for these patients. One was via new legislation which has failed at every angle. Number two…people have been traveling out of state to “legally” obtain  cannabis oil but illegally transport it back to Georgia. The governor sternly warned there would be consequences for these actions.


  • So, why sign a bill into law that helps those who need treatment but not allow them to get treatment?


Well, that’s what everyone here has been asking. Another bill was submitted that added more ailments and provided instate cultivation so that patients could get adequate treatment. It came to light this week that our lovely governor would not sign any instate cultivation bill while he is in office…and he doesn’t leave until 2018/19 so…this is the proverbial rock and a hard place.


Ok…onto the last of the story. Since the governor has championed support in the state senate (more like strong-armed), a sufficient bill will not leave committee. There is nothing that can be done for another year and this is only February. Think of how many more people will suffer and die because of this insane approach. I learned today that parents will publically put their lives on the line to transport cannabis oil for their children, loved ones, those who are suffering in order to force the governor’s hand. This will get ugly but how does one tell a parent that they cannot get the treatment the child needs? That’s like have a life-saving drug in the pharmacy out in plain sight but no one can purchase it…


Whatever stigma cannabis had in the 70s, 80s, 90s…that stigma needs to go away. My mom would have benefitted from this, both her pain and her arthritis and she would not have had the side effects from the drugs she was given. We allow alcohol to be consumed like it is water as long as you are old enough but cannabis??? Alcohol is so much worse. 


I wish I knew then what I know now and let me say that people who refuse to provide treatment to those in need, even those who get in their way, should face stiff consequences—even jail time. FYI, these are my opinions. People are suffering and dying and we are supposed to stand around and watch? No.


May your gardens grow with lasting abundance–always! 🙂


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Everywhere I look, I see where the girl who ended her life is being applauded and memorialized and iconized—everywhere. Why? ‘Death with dignity’ is what the headlines read. Just a few months ago, Robin Williams killed himself and everyone was horrified that he would do such a terrible thing even when it was revealed he was having problems with depression and Parkinson’s disease along with the drugs he was taking to combat the Parkinson’s.


Why is it ok to assist someone who has marked everything off his/her bucket list and it isn’t ok for someone to take his/her own life without assistance? Hmmm. There is a terrible double standard at play. I will not even get into the abortion issue but that’s another one I am baffled about. Also is the thought that it’s ok to murder someone as long as you are insane when you do so… Justifiable homicide by reason of temporary insanity they say…I have yet to figure that one out because if you can kill someone, then you are crazy in my book. No, it isn’t simple black or white, yes or no, right or wrong but death should not be hailed as a pleasure drug and that’s what it sounds like. Keep reading…


To come to the point of dealing with death—the act of killing someone—you have to make it right in your mind for you to deal with it—a coping mechanism as we learned in school. You have to analyze the scenario and make it so that you can live with that decision no matter if it is abortion, assisted suicide, non-assisted suicide, even murder and self-defense.


I was reading in one of those ‘dark’ nooks of the internet, this one called Reddit (be careful there) where the discussion was about ‘death with dignity.’ Several self-proclaimed ICU nurses (you never know the truth of what one writes on there—not really) wrote into the discussion about how they wished there was a way to end the lives of some of the patients…some cited reasons of seemingly compassion for seeing people suffer but some were because they thought the families were abusing the system—one even said the family wanted the patient’s meal tray at the hospital and SS check. The nurses were saying that all of these families basically didn’t care. While that may be the case, no one really knows if someone cares. And, no one knows what a loved one who is suffering actually wants. No one can weigh my heart or brain for that matter and see the love that I had for my family whom I watched suffer. I’m sure there were nurses who thought I wasn’t loving enough or cared enough or whatever but that is someone judging someone else…it can’t be done…or shouldn’t.


Just like someone who has cancer and wants to die with dignity. They want to spare their family the grief of watching them suffer but it is our way of dealing with death—humanity’s way. If we take all of the suffering out of life there is nothing to live for. You may not understand that. If you don’t, find someone who suffers every day and who also wants to live despite the pain. I watched my mom suffer day in and day out and she didn’t complain because she would rather have the time with her family in pain than not with her family. I urge everyone to think about not just your personal desires but also the desires of your loved ones—not just now or the next day but in the future when you are not around. If we make death so attractive and do not consider all of the ramifications, we are short-changing life.


Ten or 20 years ago I would probably be sitting here applauding the girl who sought to end her life with assistance—more than likely. Things change. My thoughts on death have changed because it isn’t easy to make that decision—or it shouldn’t be. It should be a difficult decision and I fear the more we iconize those who choose death with dignity the easier is to sweep those people out of our lives. I don’t want someone to dictate to me that I should cut my life short and neither do I want to be told that I must prolong suffering. I don’t want to be pushed into anything or feel that if I don’t end my life early enough that my children will suffer.


Suffering is a natural part of living and we need to embrace that part of life. When we do away with all suffering, what is there to live for? Yes, I do understand. Suffering has been the motivator in the lives of scientists and doctors, nurses and caregivers…the compassion to relieve the suffering. That is why vaccines exist and cures…it was only later that big pharma got involved and meddled with things so that money was the motivator but that desire to relieve suffering was the basis that started it all.


Have a great day! 🙂 Hugs to all.

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This is the post I was working on last week—yada, yada… 🙂 These videos are so powerful with what they have to say about ALS.

I read a rant about this and I had to ask why they were ranting and raving. They didn’t talk about people being hurt by the dumping of ice. They didn’t argue whether the money would get to the proper source but rather the individual was yapping because they were tired of hearing about some disease called ALS. (Big SIGH!!!)


I opened my mouth in several places around the internet–I didn’t hear anything bad about what I had to say and I tried to be polite. I said that people might get tired of hearing or seeing videos but that this has raised awareness in people—at least some people. Look at how much we take others for granted when they have something we don’t understand. Unless we are touched in some way with whatever disease it is, we turn a blind eye. People with ALS… I’m sure all of them would love to turn it off too but they can’t. They are stuck in their body even when their bodies become foreign to them.


I don’t like what we have become as humans. We distance ourselves from what we don’t understand and criticize others that act different from us. Who gives us that right? ALS is a most awful disease. One thing I hate to see is watching someone lose control over the simple things. It usually doesn’t happen overnight. It takes time and that elongation of time to those suffering from ALS is part of the let-down of their body. I really have no clue what they suffer but I understand losing control over muscle movement.


Note:  I wrote the above before I saw Bill’s challenge and if Bill can do it, so can many of the rest of us. Here are two very important videos—they have touched me so much.

Bill’s challenge (I love this!!!) 🙂 


And, if you have not seen this one…this is one we should all watch. It is this and more…


It bothers me that some think one disease deserves more recognition over another. I’m speaking about people who are upset that this cause that became internet viral is taking away from cancer research…it’s high time other things besides cancer become our focal point. Don’t get me wrong. I don’t look at any one disease lightly. Cancer took the life of my father and rheumatoid arthritis took the life of my mother and you know what I suffer from. There are plenty of areas that need focus.


We are all in this together. We should celebrate the triumphs and support all who show compassion to others. Let’s be good to each other. 🙂

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Enter 2014, May 1, and I went straight to the emergency room after finding out my serum Dilantin/Phenytoin level was 50 mcg/mL. My daughter drove. Actually, it was higher than 50—probably more like 64 or higher. Just take my word for it. I was toxic. I remember the guy/doctor/intern…someone saying, “You were right.”

Yeah. I knew that. Now, just fix me was my response. 🙂


Normally, your system if working properly will flush out the toxins in due time but there was something more than just my meds being out of whack. I have been taking the same dosage for years. I needed an IV drip right away.


After getting back down into the normal range and beginning to wean off this stuff I have taken for so long, I came home on a new seizure medicine. Oh, goody. I was better but having side effects and withdrawals. I was also taking Phenytoin from the same manufacturer as I was before I went to the hospital (clears throat)… My serum Dilantin/Phenytoin level began to rise again and I didn’t understand what was happening.


After arriving home, I had sense enough to get a new prescription but not enough sense to know I should have taken it a step further. You have to remember that I still didn’t know for sure what had happened to put me in the hospital. No one did. I was being treated for symptoms. The cause wasn’t being treated because no one knew what it was.


I called around and found a pharmacy that had the same generic Phenytoin as I was taking in the hospital—the same manufacturer. I began to take it and the level dropped again—back to where it should have been. So, my conclusion… what made my level spike to the toxic range was the manufacturer. Something was not right with that batch of drug I received. It was what I was taking before I went to the hospital and after I came home. Both times it caused my level to spike. I have been on this other Phenytoin since a week out of the hospital and the level has not spiked but has remained where it should be.


It was a new manufacturer my local pharmacy is using to save money. I do not know why there is a difference only that I could be dead today. I could have died from the toxicity (which is not common but can happen) or something else. I am very lucky and I shudder to think of people this may happen to and they not know it. Perhaps it will not affect others as it did me but I know this type of thing happens. I have been searching the internet trying to find answers. The only thing I know is that not all generics are the same and they should be.


Do you know how many people take it for granted — that what is in the pill they take is ok for them? We all do it. We take so much for granted. We put our trust in our doctors and nurses and our pharmacists but there is truly no one who is responsible for myself other than me and that is a very scary thought. When I am almost comatose I cannot make those decisions for myself and yes, I do question doctors and their decisions. I wouldn’t be here if I didn’t take this seriously.


There is so much I want to talk about. I know everyone has something they have experienced. There are people who are dying who cannot get meds that will save their lives and I’m not talking about cutting edge technology. I will be one of those people one day. What do I do then? (In all honesty, I am closer to that time today than I was when I wrote this yesterday. 😦 )


We fight about all types of things but healthcare…simple healthcare…it’s a right to have healthcare. Fight about guns and other trivial stuff (sorry but I look at things differently) but healthcare…we should all agree and it should not ever be political — NEVER!


If you care for or have a loved one, think of that loved one in a situation where he or she cannot look after herself or himself and there is no one else. We all should shoulder the responsibility for others. That might sting but I believe it. Along with it comes responsibility for all of us.


I never want to worry about what I put in my mouth or body—if it will damage me. I would love to have someone I can trust with my life but I don’t feel that I can, not from what I have experienced these last few months.


Mom, I’m broken.

Can you please help me?



Amy planting seeds. 🙂

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What is a therapeutic index and why should I care?


If you take any drugs, you need to know what this means. In simple terms, the therapeutic index is the window in which the drug is reaching its targeted amount in the bloodstream to treat whatever it is designed for. That is my simpleton explanation from my standpoint. You can read about therapeutic index here  http://en.wikipedia.org/wiki/Therapeutic_index  or in medical journals, etc.


Dilantin/Phenytoin (generic) has a therapeutic index of 10 to 20 mcg/mL. Many drugs do not have such a small window meaning that there is less leeway with Dilantin. Other drugs are more forgiving—the target isn’t so small. This particular one is used for seizure control. It was the “go to” drug of choice back when I was diagnosed in the early 1970s but there are probably better drugs today with fewer side effects. Each of us is different and we react to medicines in varying ways so many times it becomes a tradeoff.


I personally am at my best when the serum Dilantin level is about 17 mcg/mL—on the high end. It doesn’t take much to make it swing one way or the other but at 17, my seizures were well-controlled. To measure how much is in my system, a blood test is performed. Usually this is done twice a year when I show no problems and more if I have issues. There have been times where my level went down to 0.02 (yes, below 1). That is when I would pass out because I was not getting oxygen to my brain. That’s not a fun time either.


Anything ranging outside the bubble (so to say) is bad 🙂 . Anything above 20 is considered toxic. Toxic doesn’t necessarily mean lethal. Lethal doses are usually not referred to in the literature quite so much with humans but lethal means dead if you get my drift. Dead is definitely bad news (humor for the moment). So… toxic is an indicator that something is wrong and in my case it had nothing to do with changes of dosage—not in 2014.


Back in graduate school, my serum Dilantin level dropped and had to be reregulated…it had to be readjusted to get it back between 10 and 20. Sometimes it is hit and miss until you get it right and many times it takes a while. With me, I do better with a larger dose in the morning and smaller one at night but there are so many factors that can affect the level. Over the years I have learned what works and what doesn’t—well, usually I know when it is off.


One of my many counselor experiences during graduate school.


All this basically boils down to is how the liver breaks down the drugs. We really should treat our livers better but that’s another story, too. The highest level I ever had measured until this year was 40 mcg/mL and that was hell, to put it lightly. My gums turned white and I could not tell you who I was basically. I could not walk/balance—a host of problems. That was the graduate school lesson and the only time I ever knew when I was toxic.


If you take medication, even illegal drugs, you need to know what you are doing to your body. There is a consequence for everything we do. Choose wisely, please.


Next:  “Mom, I’m broken.”

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We should get to know our bodies the best we can as in what is healthy and what isn’t. My first neurologist told me that I knew my body better than any doctor would know it because I live with it 24 hours a day. He was right. That was empowering coming from a doctor who I perceive made life and death decisions.


Some doctors can be so full of themselves that they do not foster this type of encouragement because I think they see the patient questioning their abilities. Maybe they feel threatened. What these particular doctors fail to realize (not only doctors but medical and health care professionals) is that patients are on the front lines night and day (plus their caregivers if there are any). Equipping a patient with knowledge—the best knowledge and not hearsay—can help both the patient and health care professionals do better jobs. Personally, I think this is what it is all about.


  • Something that stands out to me is that doctors should do no harm. We need to remember this. “Do no harm…”


There are pharmaceutical companies who pay drug representatives good money to peddle drugs to doctors—often times there are no medical requirements needed and limited prerequisites for these jobs. I have questioned this type of marketing but that’s how companies have made money. Sometimes-many times-it has not been on the up and up. Clearly, this is not all bad but I can remember being given free samples of certain drugs in the past 15 years and those drugs are no longer on the market today because of side effects—deadly side effects. Drugs are supposed to go through sometimes decades of trials before they come onto the market (FDA in the US). Some never make it and some people die who could have benefited from some of the better ones. I’ll stop here—just words to think about.  Remember that we (or I) live in a free enterprising capitalistic economic system even when it comes to legalized drugs–prescriptions. That means… chasing the waters of eternal life (the Fountain of Youth) did not stop with Ponce de León. Don’t let me step on the toes of anyone—SEE disclaimer at bottom of post please.


Two articles if you are up to it…



The first is an article about one of the companies who is changing because “business” is changing. And, the 2nd is an article about a drug representative job… “the how-to’s.” The idea is to sell as much of a product as possible. No medical degree necessary—it is just business. If you could sell cars, you could sell drugs (shakes head and says, “Tsk, tsk!”). I may be oversimplifying but…


While I was recuperating, I was reading (when I could make sense of things). It seems in order to combat some of the new laws and high taxes in the US, there are some medical companies who have chosen to merge with companies overseas so that they are not required to play by the same rules as other companies in the US. This has been happening in other job sectors. We are just seeing more of it in the medical field now. I understand profit margins but I hope this does not lead to less quality per se. Unfortunately, I think I have experienced this firsthand (possible reason I ended up in the hospital).

  • Back to “Do no harm…”

Whatever we put into our bodies will affect our bodies in some way. Sounds like one of Newton’s Laws doesn’t it? More like common sense perhaps? Caffeine, sodium, nicotine, alcohol (to name a few) are all bad for us in larger quantities. Add some prescriptions…legal drugs…and/or illegal drugs, and we are getting a real mix going. Even sugar can become poison in people suffering from diabetes.


It really does not stop. It is like a snowball effect. Some of our bodies are tough and can take it, i.e., the toxins are filtered out but that can’t last forever. There is a cause and effect relationship. What happens when our bodies begin to break down? We have responsibilities to know beforehand—before we start popping pills. None of our body parts act autonomously. Everything depends on something else. Once something starts to break down, it is almost a cascading event…the dominoes begin to ripple through.


070114I know that these topics may not be everyone’s cup of tea but that’s OK. Next is therapeutic dosing and what happens when the target window becomes too small. I may one day get to why I went to the hospital. 😀 Now for the disclaimer I promised…




I have no intention to bring harm or cause damage to any person or company for that matter, government, etc. I cannot give medical advice but I can tell you what has happened to me in the forty something years I have been taking certain medications. There will be no endorsements here but there will be some warnings. I believe that we should know as much as we can about our bodies and how our bodies act and react to certain drugs and treatments before we agree to bombard our bodies with certain things such as regimens of pills. If my comments hurt anyone’s feelings, I surely do not mean to do such. I encourage everyone to become as knowledgeable as possible. You are the last line of defense for your own health and welfare. Good luck.

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It took courage on my part to open up about my brain a few years ago—the part about my abnormality—all joking aside. I figured maybe someone might come across something that might help them whether it is dealing with something health related or what … or possibly just so others can understand from another’s perspective…my perspective. I know I would have loved to read about someone with a similar brain buggar when I was young (I am referring to my AVM, of course).


I continue to have more setbacks lately and that’s unfortunate but not insurmountable. Long ago, I fought to be “normal” but I am losing that battle. I think people shouldn’t have to fight to appear that way. There is a lot of baggage I carry with me because of various circumstances I found myself in but no one wants to read about how bad someone has it day in and day out. We all have problems of our own and don’t need to attend every pity party so I tried to bring out the parts that I had hoped would help others.



Making faces while waiting for the doctor

Lately—I can’t seem to get my life jump-started again and I need for my own sake to tell what has happened. Again, this is in hopes that these words might help someone else. Bear with me please as I try to set a course–I would probably be really bad at sailing, you know. 🙂


First, my brain buggar isn’t going away and I have known that for decades. It is a part of me just as my foot and hand are a part of me but more like a piece of my heart that cannot be touched. There is no “fix” … no balloon stint or repair kit. A new inner tube will not do even if I had such.


I try my best to laugh at things—use humor rather than seeing things so dismal. It is my coping mechanism and yes, there are times where I cry with my arms wrapped around my legs, my body in a ball…me just wishing the pain would stop or the numbness would quit spreading and that I would regain feeling so that I can walk or feel or hear … or be somewhat normal. With that said, I can’t complain and I know people who will read this that are so much worse than me. Right now, life is ok…pretty ok for me. I can walk with little help but that is today. Who knows what I will be like in several hours? I can still hear some things and I can still see and for these things and so much else, I am so very grateful. I appreciate all that is given to me. I am blessed beyond measure.


Breathe… I am embarking on something that will probably not go the way I want (seems that it rarely does) but I desperately need to shed some light on things—this is not a one-post type of situation. I could sit here and complain but that won’t do any of us any good, so…


I want to talk medical. I want to begin with drugs—prescription medicines. At the forefront will be what we know (and I say “we” because this isn’t about me). What will — I hope — become apparent is how much we do not know about the drugs we consume and how much we assume there is someone watching out for our best interests. I will tell you what I have encountered and I hope with all of my heart that this helps someone besides me. I can tell you now that it is a very serious topic and at times there is no humor but only tears.


I am not sure where this will lead but it needs to be said. I’m not trying to lead a revolution only to talk about things I have encountered and I’m sure there is much to add that I do not know. People need to talk about it–medical care. We–people–families–communities need to discuss some things. The only person that has our best interest at heart is us and as sad as it pains me to say that…it is the truth. This is NOT about politics and I will not discuss political dealings. This is not a soapbox for the political arena. It is about what happens when we don’t know the questions to ask our doctors and pharmacists. It is about what happens when there is no one to intervene and consequences of our actions or inactions. I hope you find something here that can help you if not today, maybe down the road. 🙂

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