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...

Living with Bob (Dysautonomia): Am I sick enough for you?

Great Blog Post! (Reminded me that I saw someone I hadn't seen in a long time last night, and they told me, "Well you look very...healthy". lol. [As my heart pounded so hard I was trying to hide I was out of breath cuz I dared to eat and then do something besides lie down afterwards.] I probably shouldn't jump to conclusions, who knows, maybe he thought I looked fat, and was trying to find a polite way of saying it, but considering it was a friend of my brother's, and he must be telling people some good excuse for completely abandoning me to my luck...)

Living with Bob (Dysautonomia): Am I sick enough for you?: Today I read another "but you don't look sick" comment, and it really got my goat ( fainting goat of course). The comment was...

Other Symptoms...

I cried tonight as I drove home. Home. Whatever that means these days.

Funny thing I am. Sick. And homeless. Yet I can still go out on a date. Tired, exhausted. Somehow I can still core a date, after a whole week plus of making the usual excuses, too tired, too busy, not feeling well. But I can still score a date, to a pricey steakhouse. Albeit the Happy Hour Menu. And given I don't eat meat.

I'm always tired lately. No matter how much sleep I get. And it's not the usual fatigue, now I'm actually sleepy, lusting after the luxury of dozing off in peace. But I couldn't. So I chose to be kind back to someone who has been kind to me, and rebel against the sleepiness. 

Funny, again, how many people act like because I could be considered attractive that should solve all my problems. That's not how I work, not how I'm built.

Not genetics, I'm sure, after much thought, but some over-active sense of morality and self-worth I acquired through all the damned reading I did as a kid.

Never to be suppressed, the rebel in me opted to go somewhere I might run into my brother.  Sometimes, I come to the false conclusion that making those who inexplicably hurt me uncomfortable might make some kind of a difference. Might make me feel better. Just because I know I'm making them uncomfortable. Or maybe I just hope at least under some circumstance, I might find the love and affection I've been denied.

After being ignored for most of an hour, I ventured to make my presence undeniably known, and received a greeting driven by appearances sake.

I found my companion at as much as a loss as I was. As kindly as possible I was asked what I might have done to deserve such treatment.

I knew he had to see it for himself to believe me, because sometimes I wonder if I might be a liar deluding myself to not know how I merit such rejection and abandonment. I've searched and searched, and all I find is that maybe I've pushed too hard, wanting the best for him (although to no avail)  and that really, I have done nothing so severe (I've even confessed the worst of my transgressions to see if my take on things was skewed and had it reinforced that I've done nothing so severe...and when I want an opinion, I press for the truth, pleasant to me or not; I strive for insight.)

At worst, I've pushed the guidance and advice that was sorely lacking to me, given lack of guidance our parents gave us both...

But nothing so severe to warrant such abandonment, unless the truth of such abandonment should count as  a transgression.

So as I drove away, mere yards in the wrong direction from the place he whom I called family lived, I cried. 

No matter how much I tell myself there is no understanding it and it's not about me or anything I've done, or failed to do, or even tried to eplain or prove, it still rips open my heart at times.

Never mind that I should have been thinking about what an enjoyable night I had, reality is not ever far behind lately. 

I suppose I should think of tears as a blessing, because for awhile there, I'd thought I'd been through so much I wasn't capable of them.

Not many, but still, it's something. and I am thankful for the few that I have in my life that don't make me feel like a worthless, crazy, psychotic liar. But I will never understand how the people who should don't know me, never have and apparently, never will. 

Thankfully, sleep calls. And again, the feeling that I can't get warm. I will beat it too, again.

How to cope with POTS When Homeless! (For real)

Now, I've gotten pretty used to my heart rate going wild at this point, & usually just try & keep going about my business, maybe taking an extra beta blocker. But sometimes, POTS symptoms come in a package deal.

Chest pain, a nasty feeling of pressure on your carotid artery, numb/tingly feet & hands...along w/the usual tachycardia.
Times like these, I find it is a must to not just lie down, but lie down flat. Sitting scrunched up or half reclined in a car chock full of personal belongings just will not do. So...here is a nice compromise!

Find a nice park with grass not too far from the parking lot.

Lay down a blanket, preferably not one you'll be sleeping with.

Spread a jacket over your skirt if you are wearing one & you like.

Lie down & enjoy the view. Trees, grass, sun, wind... Little squirrels playing peek-a-boo...

Actually, kinda nicer than lying in bed staring at the ceiling, willing your heart to slow down, chest to stop hurting, & neck pressure over your carotid to ease up!

Madness.

WARNING:
This story may be shockingly unbelievable, and has to do with sensitive subject matter involving police, psychiatric facilities, shocking acts and irrational people...

Well. Things just continued to get worse where I was staying. She gave me 2 weeks to move out, till the end of the month. Then the next day, I came home to find the gates that gave me access to my room locked, and all hell broke loose. She wanted me gone that night, which she proceeded to tell me in about 15 insulting, demeaning text messages, and I told her she was going to have to wait till morning. (I'd had a really exhausting day, driving out to & putting some of my stuff BACK into my storage, getting my pain medication from the pharmacy, & picking up my mail, then turning around & coming back; plus it was 10pm; how was I supposed to find a place to stay at that hour, on such short notice, even if I didn't collapse from the strain?)

Yes. So I spent the night getting text messages where I was told I wasn't really sick, it was all in my head; that she wouldn't be enabling me anymore, that if I was sick, it was in the head, that I was crazy, a loser, a mooch, a leach, all kinds of craziness. I stopped responding, and they eventually stopped, and I got to make arrangements with a true friend, to get help moving my stuff out the next day.

I'd wanted to go to sleep early, but I got anxious, wondering if that crazed, nasty woman was going to bust in my door in the middle of the night & do who knows what to me or my things...(seeing as how the room is tiny and there is one foot between the door & the bed, at most, it's not like I could defend myself) and sleep wouldn't come easily.

I got woken up to her pounding on the door telling me to get out, and I began to oblige, packing all the things it had taken me TWO trips to my storage to bring back...she'd told me I could have a yard sale, previously...

She was yelling and pounding on the door while I tried to take my meds, keep my tachycardia from getting too out of control, and pack, and then she started removing all the things & food I'd had stored in the garage refrigerator or elsewhere and putting them outside the back gate, screaming at me the whole time, so finally, I started screaming back to leave me to pack in peace, I'd already let her know someone was coming to help me...finally I screamed a threat at her, something private that she didn't want told, that I'd tell it if she didn't leave me to pack in peace. She finally left.

She started texting me though. Then finally stopped, and later, told me she "didn't want to throw me out on the streets if I had no place to go" which I had to try hard not to smirk at, because obviously, she'd wanted to do that last night, so why not now? And that she would leave the doors unlocked so I could load my things and let the friend in to help. Then she got her kids (and the dog that liked me) together and left.

So I finally felt safe enough to get my car, bring it around back, and start loading my stuff, valuables, like my purse, my laptop, etc., first. Then I popped my trunk, and walked back in to get more things, and heard something at the gate. Relieved, I assumed it was the guy who was coming to help me move. I opened the door to find 4 policemen. I started, confused that she'd called them and left, and then relaxed, thinking she was silly and how much easier it would be if she came back and they were here, so she couldn't harass me any more. So I invited them in and asked them how I could help them, smiling.

That's when they told me that my Mom was very worried about me and was on her way over.

Which confused the heck out of me, because I couldn't understand quite what my Mother, who I purposely hadn't seen in over 6 months after she told me that I should search my conscience because there must be some reason I was sick, and ask for forgiveness or something insane and cruel and fanatically religious to that effect, had to do with anything. I had told the crazy woman that she was reminding me of my mother when she was mercilessly insulting me, and she had offered to call her and ask her to take me in...so my first thought was that she had called her, but then how did that explain the cops? Well, they kindly cleared that up for me shortly.

Apparently, my mother had called them because she and my brother were worried about me. They thought I was going to try and hurt myself. The words 5150 Psychiatric Hold popped into my head, and suddenly I became very wary of any and all conversation or volunteering of information with the 3-4 cops in the backyard with me, and when I ceased to cooperate, they put me in handcuffs! I talked them into waiting until my mother arrived to clear things up to escort me out front and put me in a car, and finally managed.

My mother acted all distressed to see me in handcuffs, but her feigned distress suddenly went away when they told her it was procedure, and if she wanted them to hold me, they had to.

When it became apparent my Mother was not going to be swayed, I must admit, I had some choice words for her. Man those handcuffs hurt my tiny, screwed-up wrists! And then my shoulders started to cramp. Thanks for that, Mother. I had some choice words for the cop, once I realized he wouldn't be persuaded to stop and secure my car, with all my most valuable possessions in it sitting wide open.
However, he soon forgave me and we made friends as we waited for 3 hours in the waiting room of the Psychiatric Emergency Room at the lovely County Hospital, and I eventually got him to loosen the cuffs, and let me keep them in the front to ease the redness and swelling in my fingers, and so I could put my feet up on the chair next to me so my blood pressure didn't get too low. (Turns out, at that point it was quite high, and I had a fever.)

When my crazy mother and her pawn, my brother, decided to show her face, it had just dawned on me, that despite them saying that the crazy woman had nothing to do with it, neither of them had known where she lived...

And that's when I figured out that all this was my former friend's way of keeping her secrets safe. She must have gotten in touch with my brother, gotten my Mom's number, called and told her (like she'd been spewing at me) what a wonderful person she had been, trying to help me out, and how I was a crazy, ungrateful, loon, and everything else my mother could possibly want to hear to make her feel better about turning her back on a sick daughter who had busted her bum trying to make sure she had a nice place to live and money to live off of the past year. (She was extremely upset that when people asked me why my Mom didn't help me out once I became homeless, I told them the truth; that her moods had been erratic the past year, she'd been having fits of temper, probably due to her refusing to follow the treatment for her blood pressure, and that she had been being more and more cruel and verbally abusive more and more often, and that I'd had enough, after spending over a decade in therapy trying to learn how to get along with her or cope with her treatment of me, and been repeatedly told that I just needed to stay away from her, which I was doing well at until I got very sick and needed...someone.)

When I tearfully started explaining it to them, then asking them how they could believe her, knowing the woman and what she had put me through in the past as they did, how they could believe her over me, and do this rather than just offer to take me in, my brother flinched, and I was pretty sure he understood he'd been duped and used against me in a very nasty way...he later got in an argument with my mother and left.

Oh, there's more ridiculousness, but in the end, the cop put in a good word for me, after all, I'd ended up telling him how things had been and from my family's attitudes & reactions I think he saw that it was all true, and didn't buy my dear mother talking to me like an idiot telling me that I needed to be evaluated .As with past doctors, the Psychiatrist saw through her bs, heard me out, and the lack of my brother supporting my mother's story helped too, so she told me she was letting me go. There was no need for me to be on a 72-hour hold, or even stay a second longer than necessary. Of course, then my dear mother disappeared, once we got back to reality, where I'm physically sick and she's back in her own sick sad little world where she, and only she has the right to feel or be sick, and everything I've done for her is forgotten and buried...

I walked out, free, but with no purse, phone, money, or even a sweater for the cold wind that was blowing, feeling sick, and sore as the adrenaline wore off and all the awkward positions I'd had to endure began to make my muscles ache. I waited for a friend to come pick me up, and she did, just before I was about to sign into the regular ER and try to get a saline IV in hopes of stilling my raging, beta-blocker starved heart rate and the overwhelming feeling of malaise and weakness. And I still had to go get my stuff back. Escorted by the cops, as the crazy former friend (who never deserved the title) hung up when my true friend called about picking up my things. She opened the door with a look of surprise on her face. Oops. They don't keep sane people in the Psychiatric Ward on 5150 holds, sorry.

*(At least not in this case, lucky for me, but here is the story of Sophia Mirza, who died in the UK of M.E./CFS several years ago, and was put on a Psychiatric Hold by her doctors. At least in my case, I only have my MOTHER to fear.)