A Letter to Patients With Chronic Disease

A Letter to Patients With Chronic Disease

I'm really surprised I've never come across this post before! That first comment (below the post) made me well up, it's so true, just meeting a healthcare practitioner who WANTS to help elicits a feeling of undying gratitude in me, personally... Having a doctor who you can tell your complaints to whom you don't have to fear being given that dubious look by...just means so much just in itself!

The last few years, I've come to feel like a Professional Patient. I'd lost my insurance, moved, accquired MORE chronic conditions...and having had to mostly take what I could get, I came to know well the feeling of dread that comes with going to see a new doctor when you have an incurable illness and symptoms that keep piling up. It's funny, because this letter actually sort of describes what I already do... I go in, hoping for the best but expecting the worst. I steel myself for the sidelong glance, prepare myself to not get too defensive if I see the wheels turning in their heads towards the direction of questioning disbelief... Try to find the balance between patience and the firm resolve to get what I need while not inconveniencing them excessively... Give them the information they need to help me little by little, gauging their reaction to see if it's safe to proceed, or if they've had all they can handle, estimating the dominance of their ego so as not to threaten it and risk them shutting me down, if I should play dumb or hit them with everything I know and hope they will let me be a partner in my own care... It's like an intricate dance.

It can be very exhausting, at times heartbreaking, discouraging, and other times fill one with hope, gratitude and encouragement. (Which is why sometimes, I just need to go awhile without seeing a new doctor; you never know which you're going to get!) And it seems like I'm always seeing one...This year, with all the upheaval, it amazingly has only been one, my Endocrinologist, I believe. But last year brought a Neurologist, a Cardiologist, and a Gastroenterologist, and at the very end, a new PCP. (One of those lovely ones that listens, wants to help, is kind, and makes you so grateful!) I finally gained the trust of my Rheumatologist, who now prescribes the drugs I need without looking at me suspiciously, and my longer term docs, the couple I have, are of course still around because they are good at what they do, understand my disease, and give me hope.) So...yes, interesting to see things from a doctor's point of view and have the dance we do acknowledged...so perfectly! And also the fact that Emergency Medicine is SUCH a different specialty...Which I'd come to the conclusion of as well, after having a friend become and EMT and decide that I must be a drug addict or a crazy because if he saw me in his ER he would find nothing seriously wrong with me...which is ironic because he's the one who noticed my POTS-induced tachycardia one night which made me think it was safe to talk about with him. Wow. Big mistake! But anyways, I digress...My point was, I loved what the doc said about avoiding the ER, Good point! (Not that I haven't been tempted lately...Fun times!)  Again, good post!

Here we are again...

Wow. Worn out. My immune system is falling asleep on the job these days. I have at least two infections that won't quit, probably another one that is just barely staying under the radar, and telltale marks on my torso probably from that sneaky cuplrit, that crafty little Coxsackie virus that has taken up a more permanent than welcomed place in my body.

The worst one though, seems to be a UTI I have that I'm betting has gone to my kidneys. More than betting, really. Although none has been as bad as that first one I had where I was half delirious, had to be helped out of my apartment to the hospital and had a fever giving my joint pain so bad I could barely walk so they brought me a wheelchair, I have to wonder if it's just a matter of perception. Back then, nausea was a symptom I found so unbearable I didn't eat for 3 days (I thought I had food poisoning or a stomach flu) fever was a rare occurrence, and I'd never had a kidney infection, just a handful of slightly alarming bladder infections.

These days, nausea has become just another of my ever-present symptoms, fevers come and go at will, and I'm all too familiar with my post Interstitial Cystitis diagnosis bladder infection symptoms. More than anything, I just feel weak. And aside from some pangs of pain and bloating, my most alarming (to me) symptom is that my POTS is getting aggravated. Even with my bp lifter, Mestinon, and my Metoprolol, I'm getting dizzy upon standing or sitting, and the same cause heart palpitations, if not tachycardia. I went to a stupid free clinic out here and got some antibiotics from a Nurse Practicioner with a bit of a hostile bedside manner. (She didn't want to give me Pyridium, later turned out that it seemed she didn't know what it was?!? Seriously?!?) And although I told her I was pretty sure it was already a kidney infection (I had to wait a few days to see her, & since the symptoms of IC are just about the same as a plain old bladder infection's...) she told me she'd do a culture & wait & see. (I have the suspicion that to diagnose a kidney infection, you need to do bloodwork, in addition to a urine sample/culture though, no?)

I finally coaxed my brother to lend me enough cash to go see my own doctors, an hour away (literally ran out of gas in front of his place after going to the pharmacy Saturday to get my beta blocker) so hopefully that will go well...although I'm nervous, because I'm afraid I won't be able to afford the antibiotic they prescribe me. (Checked the literature on my former one, which I finished, and apparently it does not have any effect on Kidney infections, fabulous!) So the day after finishing the stupid antibiotics, I go shopping with my brother for a new TV, and I'm sweating and hurting and feeling weak...back to square one. I'm seriously, SO. EXHUASTED. OF. THIS. CRAP.  Of everything being so complicated because I'm broke and underinsured... Jumping through hoops, begging, & pleading to get help when I barely have enough energy to go through the motions...Well, just a couple more weeks left now...and I'm not even sure I'm ready. Well, I know I'm not, because my lawyers wanted me to pay $750 to see an expert medical witness doctor type, which I obviously don't have...Sigh...Tired...