Love, Hate, and Wisdom
I tell every Dr I ever see the same thing when I first meet them. If I call you, it’s serious. I don’t run to the Dr. for every bruise and sniffle, so if I leave a message saying I need in, it really is right-now urgent. I don’t kid about that and I expect them to take me seriously. This woman rarely even saw me up until I got fed up with the pain and stiffness, and episodes where I could barely walk. After going through a carnival of horrors with my HMO in 2006, I hadn’t wanted to deal with any of them again. I knew from experience they would 1. Refuse to give me a cortisone injection for no good reason, 2. Send me home with pills – most of which I can’t take without severe digestive distress, and 3. Maybe send me to physical therapy if I yell about it enough, but it won’t do me any good in the long run. Since the discomfort is now affecting my hands, I really can’t ignore the problem for their convenience anymore. After a friend gave me more info than I’d have gotten in a decade of dealing with my provider, I requested some tests. It was then that this positive ANA popped up. It didn’t surprise me by then. I expected it.
Unfortunately, Drs don’t like educated patients that expect certain results. My feeling on that is basically, ‘cry me a river because I don’t care‘. I’m not going to play dumb for anyone because, I’m not. If they’re so insecure that they can’t handle an intelligent conversation with a patient, they really shouldn’t be a physician in the first place. I’m paying them to assist me, and I am the one in charge of my health care. Period. Thank God my rheumatologist doesn’t act like that. I might have to enact the Lupus Serenity Prayer if they were ALL that way. If you haven’t seen it, it’s such a scream I just have to share it here:Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of all the doctors I shot when they said, “You’re perfectly healthy, it’s all in your head.” You must understand how common a thing it is for a Dr to suggest to a patient with autoimmune inflammatory symptoms that they should be sent to psychiatry. They slip it in there like it’s the only possibility and you should just accept that answer and go away. It’s getting worse too. No one wants to pay for anything, and the most offensive part of it is that I’m really sure after 5 years of premiums and co-payments, I’ve paid for any test I might need about 3 times over – especially considering my coverage has DOUBLED in that time (the cost, not the care). Being that I do not have a long history of invalid complaints, drug-seeking behavior, or nagging messages, you would think the fact that I’m now complaining about health issues regularly would make them pay attention. Instead I get, “I don’t know where to send you, except maybe psychiatry.” Between that, refusal to repeat necessary tests, and various dropped comments based on her personal religious beliefs, I’m about to blow a gasket.
Yesterday I accidentally crashed my electrolytes. Apparently the care with which I set up my necessary dietary regimen to reduce my discomfort put me on a delicate edge. Somehow I managed to forget that I hadn’t had a solid meal, what with running errands and working on my websites. By the time it got to around 9:00pm, I felt pretty ill. My heart was beating hard and irregular and my skin felt hot, but dry. I’ve experienced heart palpitations so many times in my life (hereditary) that I routinely will just go lie down until it eases. I did, and it didn’t. It finally took someone checking on me and determining that it was too warm for me in the house before anything made sense. After a discussion about temperature and how I was feeling, I managed to get my brain in gear enough to hunt down some Gatorade. After that I realized I needed food. Oops. I contend with my Drs regularly that removing salt from my diet is NOT a good plan, and they never understand why. I guess they assume that I eat like the average American junk food junkie, but I don’t. When I don’t salt my food, I crash. Since I didn’t eat food, I didn’t eat salt. You see where this is going. It was hot yesterday and I was out there. The problem with such a condition is that by the time you’re getting critical, your brain no longer functions well enough to tell you what you need. End of story was turning the A/C up, which I wouldn’t have chosen since my feet felt like ice, and getting a lot of fluids with citrus and a meal in my system… and I felt better. Better, not perfect. I’m still struggling today. The PROBLEM is that shouldn’t happen so easily. It’s not “normal”. I’ve had issues with this most of my life in fact. Yet… I can’t get a Dr to take a real look at the list of difficulties. Take this pill, go away.
I love the suggestions. One was for my complaint of memory problems. Her diagnosis was “stress”, and her plan was that I should read more books. That will improve your memory, she said. She then added in that irritating sing-song mommy tone, “and not TV…”, to which I replied with a sour look, “I DON’T HAVE TV.” I haven’t for the last 2 years. She had nothing to say to that. I think she has a hearing problem. Seriously. We went round and round about blood pressure for a while too. They would use that damnable automated vice (no, I didn‘t mean device), which causes me a great deal of pain, then wonder why my BP was high. I would tell them to check it manually and it would be normal. They would have already recorded that it was high from the nurse’s station reading however, so I would get a letter from the HMO telling me how bad it was and that I needed to make another appointment. I would throw the letter away. Finally I got sick of hearing her bitch and started eating ½ cup of dry roasted soybeans a day. It was genuinely a TOUCH high (not nearly so much as the anaconda machine generated), so that brought it down sufficiently. She checked it after I’d done that for 2 weeks, looked irritated and said, “No, you’re not hypertensive.” I looked bland and said, “I know.“ This was in the wake of about 4 prior conversations that went like this…
Dr: If your blood pressure stays high I’m going to put you on medication.
Me: No you’re not.
Dr: Well I will have to.
Me: You can write whatever you want but I’m not taking it.
What not a single one of them could pull their head out long enough to hear me saying was I’M IN PAIN OF COURSE MY BP IS HIGH. I came in there in distress and then they clamped my arm so yeah it was high. The next beautiful thing was me trying to make them understand that when I stand up it drops… a lot. The nurse perked up and said they were doing a study on that right now, so she checked it with me standing that time and indeed it did. Almost 30 points. It’s enough to make my head pound at times. You would think she would have noted that in the chart. Instead she used the lower number only. That’s peachy to shut the Dr up about “high blood pressure” but it doesn’t get me any help with the real problem. It’s a total circus.
Most people would just take the blood pressure medication, I suppose. I know from past experience a couple of pertinent facts that make it both unnecessary and dangerous. The first is that when I am not in pain and am able to go about my normal routine, my blood pressure is also quite normal. The second is that when they diagnosed me with PCOS in 2003, they prescribed the usual course of treatment initially, which is a blood pressure med called Spironolactone or Aldactone. It has the side effect of being diuretic which flushes excess hormones from your system. That’s why they use it. That would be wonderful if I weren’t deathly allergic to it. What I couldn’t tell at the time was that it drops my blood pressure SEVERELY, even in miniscule doses. I mean I chopped those pills into thirds and took the pieces with meals and it still happened. I felt a weight on my chest, I couldn’t walk 20 feet without my heart pounding and feeling like I wasn’t getting enough oxygen to stay on my feet, and I felt panicky. Along with feeling like I’d swallowed razor blades, it was overall unpleasant. I’ve listed myself as allergic ever since without exceptions. My current HMO has record of this. Would you believe that her response to me pointing this out was, “Well that’s why there are a lot of different medications”..? The thing I’ve learned over the years is, they may change the name a little, but if it’s a specific type of medication… there really is little to no difference in it’s mechanism. That means the side effects aren’t likely to change when they’re as severe as my reaction was. I also had an ER crash my BP critically with Dilaudid and Phenergan in 2006 so I think I know what I’m talking about by now. My body doesn’t like foreign chemicals. What’s the mystery here? Bad things happen.
She took offense one time when I said I didn’t want to be a guinea pig. She defended her stance and the change in medication the HMO was pushing (cost does that regularly), rather than understand that I’ve already been through enough discomfort to know what does and doesn’t work for me. It isn’t like I live in my body 24/7 after all. What do I know?
For some reason, in the midst of all of this when I had a sinus infection she decided that prescribing a sulfa antibiotic for me would be a good plan. I won’t go into the ugly side effects in detail, but suffice it to say I won’t get within 20 feet of a bottle of that stuff again as long as I live. The petechial rash and endless itching was just one of the joys I had to endure before finally telling them where they could stuff their Septra/Bactrim and requesting ordinary old Amoxicillin. Lo’ and behold I got better. No one finds it odd, of course, that I’m allergic to the one type of antibiotic known well to cause severe and even life-threatening reactions in Lupus patients. Never mind that Aldactone is also a sulfa drug. HMMM… gee.
And now for my other favorite, a relaxation technique when you’re having a bad day….Picture yourself near a stream. Birds are softly chirping in the cool mountain air. No one but you knows your secret place. You are in total seclusion from the hectic place called ‘the world.’ The soothing sound of a gentle waterfall fills the air with a cascade of serenity. The water is crystal clear. You can easily make out the face of the person you’re holding under water. Tala