By Beverly Hicks Burch
So, what has Bev been up to? Well, as life would have it, a little of the same and a little of the new. It’s been a busy time, a hectic time and as kismet would have it a sickly time. Like I needed that like a hole in the head!
It’s kinda like this…in November when I went to my rheumatologist in Birmingham I knew I was feeling really bad. I was sick. I could barely lift my left leg because of hip pain to put on a sock or shoe. As I drove to Birmingham both of my hands hurt just to hold the steering wheel…I wished I had learned that knee-driving trick Daddy used to do when we were kids. No kidding…he could steer the car with his knees and eat a burger if he had to, but of course that was on rare occasions. I guess steering wheels were larger back in the days…
Anyway, by the time I saw the doc, I don’t think there was a place on me that didn’t hurt, ache or wasn’t swollen. My eyelashes even hurt. It was a good thing I was seeing him.
The last few years have been rough…in more ways than one. Of course autoimmune disorders are exacerbated by stress, trauma…and drama. Umm…isn’t that how you spell LIFE?! So, you don’t have a snowball’s chance on a hot day in July unless you live in a deprivation tank or a monastery or convent for avoiding those factors…and I’m sure there’s a different kind of stress in those surroundings.
Sometimes I do become a little skeptical of doctors themselves. I often comment that after all they are just “practicing” medicine…maybe they’re not quite sure yet about what they’re doing. Those expressions are in moments of frustration…
For instance, in October 2005 I literally nearly died because of a careless mistake a doctor made. I had just moved to Knoxville and was looking for a primary care physician. I had begun to have some hypertension problems…something new for me and I could tell it was getting severe because I was keeping a very troublesome headache. My doctor in Alabama had given me a diuretic for hypertension just before we moved, but I knew it wasn’t treating the problem and needed further treatment.
So, off I go to a new doctor in Knoxville. Now, because I have such an extensive and long medical history I keep a record on a Word document which I update routinely. I also keep an updated list of my medications on a Word document. This is a good time to recommend you do this if you have any medical conditions and/or you take prescription medication. Be sure to tell someone in your family where it is on your computer so they can access it in a time of emergency.
Anyway, I went to the new doctor armed with my medical history and medication lists and explain why I was there. I filled out all the necessary paper work…a lot of which was a redundancy because of the documents I provided, but I didn’t mind…better safe than sorry…
When the doctor walked in I got bad vibes right away. First, I felt like he had just gotten off a tractor…he seemed more like a farm hand than a medical professional, but he was on my HMO’s healthcare provider’s list. Then, I knew from the way he talked to me he hadn’t taken the time to review my paper work or the history I had provided him. My first clue? He seemed surprised when I mentioned I was a two time lung cancer survivor even though that was clearly noted on the paper work I had filled out in his office and on the medical history I had brought from home. I also told him I had taken two of the diuretics previously prescribed earlier that day.
As I was to discover later, evidently he hadn’t paid much attention to my list of medication either…and that almost cost me my life. Long story short…he prescribed a hypertension medication for me. I took it to the pharmacy, had it filled and took one with supper.
About 10:30 or 11:00 that evening Tall & Handsome and I had been sitting in bed watching TV when all of the sudden I started feeling strange. He had drifted off to sleep. I staggered up to my feet, mumbled to him I felt odd and tried to make it to the bathroom. He of course hadn’t heard me…the one time Mr. Insomniac was sleeping soundly. He did hear me when I crashed to the floor in the bathroom doorway.
After the cats levitated in the air and shot off and hid (that’s a neat trick I wish I could learn), T & H jumped up and was at my side in a couple of seconds…his face as white as a sheet. I told him I felt extremely odd and it was getting worse. He asked me what kind of odd and I told him it felt like the life was draining out of me. He instantly took my blood pressure. (He really would have looked good in a white coat and been debonair as Dr. Tall & Handsome. But, alas, he has one of the same maladies as me…the sight of blood.).
If he had any color in his face…it drained out at that point…when he read the BP monitor. My BP was something like 78/46 and my heart rate was about 47. He wanted to call the paramedics, but of course being the stubborn Scotch-Irish-German-Native American that I am, I said no…oh, and the fact I’d had a bad experience with an ambulance before didn’t help.
I contended the BP machine had to be wrong and I finally agreed to let him take it again. I think any color in my face must have drained out at that point because the numbers were even lower by then…and I was scared. I agreed to let him call the paramedics.
Word to the wise…don’t ever collapse upstairs…because you have to walk yourself down the stairs…then you get on the gurney! Oxygen, IV, tubes and all! I vaguely remember T & H slipping socks on my feet (he’s sweet like that) before they closed the ambulance doors and then he dashed in to print off my medical history and med list off the computer. He knew in his state of mind there was no way he could recite all of that in admitting…heck, he’ll be the first to tell you he couldn’t recite it all in a calm state of mind. I’m the one that keeps up with his meds!
Off we dashed to the ER, sirens blaring and they sent me right back to a cold sterile room. After giving me a huge bedpan to get sick in (which I obliged), I had to hold it myself for what seemed like forever, shivering, alone until someone finally came in and retrieved it. Once again, I was alone until I heard a commotion out in the corridor. It was T & H insisting he be allowed into my room. I’m glad he did because I was scared.
I had to stay overnight in the ER because they couldn’t stabilize my BP or my heart rate. Both kept getting perilously low. I was violently ill at my stomach and blood work revealed my kidney enzymes were out of whack. I spent the night drifting off to sleep just to be awakened by the alarms when my numbers went too low. It was a great way to spend a Friday night…
So, example #1 of why Bev sometimes say doctors are just “practicing” medicine…
I changed doctors shortly after that because I found out the hypertension medication the “tractor doctor” gave me had interacted with the diuretic I had taken earlier in the day and he should have known that and forewarned me and recommended I delay taking my first dose until the next day.
To add insult to injury he insisted on keeping me on the medication. I developed a dry hacking cough and knew this was a side effect that needed to be reported to the doctor if I did develop one…the flyer that came with the medicine advised as much. My own father had been on the same medication and developed a cough and his doctor had removed him off the med and place him on a new one.
So, I called the “tractor doctor’s” office told them what was going on and got this response, “Well, I don’t think that a side effect.” And I had to stay on the medication. Grrr…
Once again, good ol’ East Tennessee born, Alabama raised, Scotch-Irish, German, Native American Southern gal that I am…I didn’t cotton too well to that…I got a new primary care physician.
The next doctor was better…to a degree. She was good for some basic things, but not too long after the ER incident I went to her about my neuropathy in my right leg. It had gotten so bad that in addition to feeling like a hive of bees were living in my leg, the burning was becoming unbearable, there was numb spots in my leg and just the softest touch to my leg would send me in spasms of pain. In other words…it hurt.
The new doc recommended a new “great” drug call Lyrica. And it was good. At first my dosage was two pills a day, but I spent the better part of my life drooling on myself in a deep sleep. Good news was…the pain in my leg was gone.
I decided to adjust the dosage to one pill a day and I was in the land of the living again. The trade off was the leg had just a slight twitch of “bother” to it…but I could live with it.
But, there was another very unpleasant, unwanted side effect…weight gain. It was like overnight in one of those drooling, stupor states someone pulled up and said, “Hey, I have a good idea! Let’s turn Bev into a blimp in time for the Macy’s Thanksgiving parade.” And, then, to paraphrase Arnold, proceeded to “pump me up”. Augh!! It was bad enough several round of steroids had already been going before paving the way…
I didn’t know what was going on…at least until I went to see my rheumatologist in Birmingham. When I told him what was going on he hit the nail on the head. He explain that weight gain was a very common side effect of Lyrica and that several of his patients had gained a lot of weight while on the drug. He recommended I discontinue the use…and I did. The pain came back, maybe not as bad…but the weight stayed…
It concerns me now because I see Lyrica being touted as a new drug de jour for Fibromyalgia (another one of my little jewels). It may work, but patients should really be forewarned of the behemoth behind this medication. When you are chronically ill, weight management is a bugger…you have multiple obstacles…and many times your medications are contributing factors.
So, currently I’m dealing with a new situation…this month I started taking Methotrexate for Rheumatoid Arthritis (RA). This was after going through another round of steroid after I got back from Birmingham and a therapeutic dosage of Vitamin D because I was very deficient.
My aunt had taken Methotrexate for several years…yes, she has similar maladies. Autoimmune disorders tend to cluster in families and mine is no exception. So, I’m a little familiar with the drug and I’ve seen how she’s reacted to it. It’s a mixed blessing.
Basically from what I’ve learned Methotrexate can be used in chemotherapy, but in low doses it can be used to treat autoimmune disorders such as RA as a disease modifying drug. It can have some pretty funky side effects including making you more susceptible to infections. It makes me sick at my stomach for about a day and drowsy for a couple of days. It’s affected my taste and I seem more sensitive to smells. I take it one day a week. Hopefully over time I will become more accustom to the medication and it will really begin to do some good.
If any of you have any experience with Methotrexate I’d really like to hear from you…how it’s affected you and if it’s helped.
What it boils down to is this…we should be informed healthcare patients. Too often people go to the doctor, get a pill, take a pill and a lot of the time don’t even bother to look at the name of the medication they are taking.
I discovered when I became more educated to what was going on with my body and healthcare, some of the fear was removed from the equation…and some of the helplessness.
I learned a long time ago some doctors may be “offended” if you are informed, educated, ask questions and want to participate in your healthcare. They are the ones with ego complexes…god-complexes. I would suggest that for long term care they may not be the one for you…at least they wouldn’t be for me.
The last thoracic surgeon who removed 60% of my left lung due to cancer in 1995 was like that…he also “inadvertently cut my pulmonary artery” during the procedure. God doesn’t slip and screw up like that, Buster! Get over yourself…oh, yeah…example #4…
© 2008 Beverly Hicks Burch All Rights Reserved.