All posts in category medicine

Side Effects

Let me be honest: I find side effects totally insulting.

Most of us with chronic illnesses take a whole lot of medications. Most of those medications come with a long list of side effects. As patients, we are forced to decide (more often than most people) whether the risk is worth the reward. We must choose whether possible liver problems are worth relief from joint pain and swelling, whether mood swings are worth relief from inflammation. Constant choices. It’s exhausting.

I have learned to read ALL of the patient information on my medications. I google them all and check multiple websites. I make sure I know the rare side effects as well as the common ones. I check for medication interactions before I take anything new. Oh sure, I believe my doctor is smart and knows what the best treatment is for my RA and fibro, but I also believe mistakes happen. I believe that my health care is ultimately my responsibility. So I research, double check, triple check. That too is exhausting.

But neither of those is why I find side effects insulting. I hurt all the time. I am tired beyond tired. I am weak. I get depressed. So I take medication to help with those things. Sometimes the medications help a lot, sometimes not at all. But…all of them come with great big side effects that I must learn to live with.

So, on top of being in pain, being tired and weak, having depression, I now also: have difficulty sleeping (side effect of Welburtrin AND prednisone), have mood swings (prednisone), am a bit foggy brained for part of the day (Lyrica), have fish burps (fish oil), have occasional stomach issues (naproxen), and most fun of all, have a day or two of horrible fatigue and nausea (Methotrexate).

Those are my regular side effects from my medications. What about the possible long term ones- hair loss, bone depletion, liver failure, kidney problems, ulcers, cancer. Fun!

Is all that worth it? Yes, probably. I am not sure how I would feel without all the chemicals. Probably horribly depressed and unable to actually move. So yeah, the side effects are better than that life. But here’s the thing I wonder, the thing that makes me get upset and insulted:

if scientists can figure out how to make these meds, can cure cancer, can find ways to travel to space, can do all the amazing things they can do, why in the hell can’t they make medications that don’t make us so miserable? I know I’m asking a lot. I really do. But wow, those of us who have to take so many medications, so many really strong medications, have too many side effects. It is TOO much, and I think scientists and/or drug companies should start thinking about chronic illness and chronic care in a different way. Don’t make a pill that trades joint pain for cancer!

Ok. Rant over. As you might have guessed today is my post-MTX day, aka day from hell. Day of fatigue, nausea and headaches, despite doubling my dose of folic acid. But…I will stick with it. Because if MTX works (in another two months, we may know!), it will likely be worth one day of hell if it gets me six days of functional.

And now I am going to bed.

Health Care System= Not Good for the Chronically Ill

We, the chronically ill, have many, many health problems. A cold is not just a cold. The flu is dangerous. We must see specialists often. We need many medications, which are often very expensive. So, generally we are a pain in the ass for the health care system.

I think, though, we would be less a pain in the ass if we were able to get the care we need in a more efficient, and less complicated, manner. Case in point: I need to start physical therapy. So, after asking doctor for written referral, I looked online to see which physical therapists accept my insurance. Friday, I called, made an appointment and was told that their benefits person would check my coverage and call me back to explain what the coverage was. That was all fine.

Got a call this morning from benefits person. They no longer accept my insurance. Ok then. So, I call the insurance company to get a list of physical therapists in my area.

There were two.

Tried to look both up online to compare; no website for either of them, though one is associated with a very nice skilled nursing center. I pick one and call the number given to me. They no longer have a physical therapist at their location.

Which brings me down to one choice, the one housed with the senior home. I call them. She very nicely said maybe they could help but they have been having problems lately getting authorization from my insurance company because “we are listed wrong in their system.”

So I am down to maybe hopefully one?

Here’s the thing: I NEED physical therapy. I would assume everyone involved would like me to be able to function, to work, to do the things I need to do. Because then I am healthier and less costly to the health care system. Right?

Except I am having to scramble to find someone to help me. And how often do I hear stories of others with chronic illnesses who must fight for drug coverage or must fight to see a specialist or who must jump through hoops to get the necessary care. It’s insane.

Because here’s the truth of it: this fight to get health care, to get our bodies even just a little better, this fight makes us sicker. The stress and the worry and the energy we have to spend on the phone with insurance companies and doctors and pharmacies- all of that adds up to a drain our weakened bodies.

So yeah, the problem with the way our health care system is set up right now is that it makes us sicker. Instead of doing its job, which is to make us well.

Hopefully I will get good news about the PT. Otherwise, more fighting for me.

3 Comments

by akajanie on April 30, 2012 • Permalink

Posted in Auto-immune disease, chronic illness, fibromyalgia, medicine, rheumatoid arthritis

Tagged chronic illness, fibromyalgia, Health care, Insurance, rheumatoid arthritis

Posted by akajanie on April 30, 2012

http://creatinganewnormal.wordpress.com/2012/04/30/health-care-system-not-good-for-the-chronically-ill/

The Fill-In Pharmacist

All my worries about the new doctor yesterday were totally unfounded. Visit was short, totally productive and without any problems at all.

But….I was reminded yesterday: new pharmacists can be as bad as new doctors.

Yesterday I got the official ok to start Methotrexate, so dr’s office called it in to local pharmacy, along with folic acid. I’ll skip the part of the story with missing scripts and having to get dr’s office involved a second time. That part is minor compared to the rest.

My normal pharmacist is on vacation. I love her. She knows me by name, remembers my meds, offers great advice. Her fill in- total opposite.

I arrive to pick up the MTX, and it isn’t ready yet. So I wait a few minutes. Finally, clerk brings it over and starts to ring me up.

Clerk: You’ve taken this before, right?

Me: No, not at all.

Clerk: Calls Fill-in Pharmacist over

Fill In Pharmacist: Your doctor gave you instructions for this right?

Me: I think so

Fill In: Well, the instructions are really specific. Let me read them to you.

Me: Ok

Fill In: Ok. (reads from label) “Take 4 tablets once a week”

Me: Right

Fill In: Well, that’s pretty much it. Have a good day.

Me: Stands in stunned silence

I have gotten better medication counseling for refill scripts. I have gotten better medication counseling for pretty much every other medication I have ever taken. And this drug is not exactly a light weight. We aren’t talking about a vitamin here, or extra strength tylenol.

MTX is a chemo drug given in low doses for RA. The product info sheet was written in teeny tiny font in order to fit all the info on there (one piece of info included that patients should wear id bracelets- I wonder if this is true).

I am so angry at this pharmacist. Sure, I know about this medication. Obviously, I know more than he does. I know to call the doctor if m side effects are too bad (and they very well may be); I know to call the doctor if I get an infection because I can’t have one while on MTX; I know I have to go in for regular labs to monitor my liver function while I take this med. These are things pharmacist should be telling patients. It is his job not to just hand out pills, but to make sure they are taken properly. Had I not done my research and been as knowledgeable as I am, I would think the only important info is that I take four pills once a week. I feel so bad for all the people who go into pick up meds without doing their own research- how many people has he screwed over with this kind of approach?

That is unacceptable.

Needless to say, I will be lodging a complaint when my normal pharmacist returns.

And on a side note: I start MTX tonight. Pretty freaked out, to be honest. But, we’ll see…

Doctor/Patient Relationships

I have to see a dermatologist tomorrow. My first visit with this particular doctor, and I’m nervous. I hate first appointments. I am particularly worried about this appointment because I have this weird….thing that my rheumy couldn’t name. The internet yielded nothing. So I am going into this appointment with no clue what I may hear. I don’t like it.

Last week, I read a great blog about first dr appointments: Ambivalence. That blog led me to a terrific blog by a doctor who wrote about dealing with patients who have chronic illness: A Letter to Patients with Chronic Disease which gave me a whole new appreciation for doctors who deal with people like me.

These blogs raise good questions.

What is the best way to start a dr/patient relationship? How much information should you reveal at first visit? Should you go into an appointment with ideas about what’s wrong or is it better to go in totally ignorant? Is it a good idea to come in with a long list of questions or a short list? How much patience should we have with our doctors and when is it time to shop around?

As patients with chronic illnesses we are too often at the mercy of our doctors. Many of us require pain medications, but there are docs out there reluctant to prescribe them. Many of us have strange illnesses that require patience and lots of detective work, but there are docs out there who see the first negative test as an absolute negative. Many of us don’t react well to commonly prescribed meds, but there are docs out there who don’t want to try six more to see which works better. So, as patients, we must either subject ourselves to the whims of our doctors, or we must keep looking, which is a pain in itself.

I have been very fortunate with my rheumy, who has been great with questions and with giving information. Who has done the detective work and not cast me aside because of negative results. But my urologist is another story. He and his nurse were disorganized and not particularly helpful. I saw him three weeks ago and have not heard back from him; instead I got my results from CDI, who ran the ct scan. I know I should follow-up with him to see what we do next, but frankly, I don’t want to.

So, it will be interesting to see how things go tomorrow with the dermatologist. For once, I go in with absolutely no idea what I may hear. But hopefully, she’s a good detective. I mean, doctor.

2 Comments

by akajanie on April 16, 2012 • Permalink

Posted in Auto-immune disease, chronic illness, doctors, medicine

Tagged autoimmune disease, Chronic (medicine), chronic illness, doctors, Health

Posted by akajanie on April 16, 2012

http://creatinganewnormal.wordpress.com/2012/04/16/doctorpatient-relationships/

Freaking Out

Today, I will get a call from my rheumatologist, Dr. K. She should be giving me the ok to start on Methotrexate (MTX), plus giving me the results of Friday’s labs and x-rays. I’m curious what they will show. Nothing? Normal everything? Or damage to my joints? Is it more comforting to hear that someone can “see” your problem via abnormal labs or x-rays? Or to hear that you are normal, despite your pain? So far, my labs have mostly shown up with problems (except for a few, of course), and my ct scans were also normal. So I am not sure what to expect from the x-rays.

Besides being a bit freaked out about hearing from her today, I am also pretty freaked out about starting MTX. Yes, I know the protocol now for treating RA is treat aggressively early to prevent rapid progression of the disease. But MTX is a chemo drug. MTX has a reputation of making its users pretty miserable, at least at first. I have been asking on message boards- what is the best day to take MTX? Because I know- and they know- that when you first start taking it, you will likely be miserable for a day or two, and it’s better to plan those days of misery around your life. And how much does that suck?

I am also pretty anxious about the increased prednisone I am on. I am anxious to kick it back down to 10. Hell, I’m anxious to completely get off the prednisone, and I am so worried about the weaning process. I keep hearing horror stories of people who can never get off it. But wow- this upped dosage makes me so irritable and jittery. I hate it, even as I love the effects: my hands function; my shoes fit.

And here’s one more thing to worry over: I messed up cooking dinner last night. Again. Forgot to push a button on the rice cooker, ending up in no rice until Bill went to the local Chinese place to buy some. Last time, I made this meal, I also screwed up the rice. Other mishaps recently in the kitchen: broken bowls, broken cups, broken salad dressing bottles. Add in: difficulty getting things in and out of oven, difficulty reaching anything over my head (which is much of the kitchen), inability to climb the step stool to reach those things, and difficulty reaching the bottom shelves of the fridge (which was somewhat corrected by rearranging everything and creating a “shelf” just for me). All of that adds up to: I am a wreck in the kitchen.

As I told Bill last night, I used to be an extremely intelligent, totally competent and totally capable person. And now I am intelligent, incompetent and incapable. I am forgetful, accident-prone, unable to reach and lift and carry, unable to do all of the baking I want to do solo.

What I want to know is this: if I take the prednisone and deal with the side effects and I take the MTX and deal with the side effects, will I come out the other side with the ability to do the things I love again? Or am I simply holding off the disaster of the future for a bit longer? Treading water where I am right now before I get worse?

When we took the x rays Friday, some of what Dr. K wanted were baseline x-rays. X-rays of my feet and chest “before” so that we can compare them later to the “after”. Translation: sometime in the future my feet will be damaged and we will want to see how much and how quickly it has happened? Sometime in the future the MTX may cause me to have lung problems, and we will want to have a comparison.

The question, I guess is: when?

All of this worry and freaking out, and it is not quite 8 in the morning. I have a whole day in front of me. Here’s hoping I can find some distraction til Dr. K calls!

The New Normal

All posts in category medicine

Side Effects

Health Care System= Not Good for the Chronically Ill

The Fill-In Pharmacist

Doctor/Patient Relationships

Freaking Out

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