Riding the healthcare rollercoaster...

I've been putting off writing an update for so long that I barely know where to begin. This will necessarily be rife with omissions... And just FYI I finally crunched the data on the healthcare experiences survey I had posted (it's now closed to new entries). Thanks so much to everyone who responded! I had some interesting results and am looking forward to sharing them soon! 

It's been a weird summer - things have been pretty apocalyptic. Plagues (bad chronic illness flares for me, plus Bruno and I both had a bad cold/flu virus a few weeks ago - fevers and snot galore), locusts (we keep getting explosions of maggots in our compost bin because of the heat, and they got into our garage), crazy weather (namely the incessant heatwave, though we've finally got a little break from that, but also the couple days of thick forest fire smoke)... It's been one thing after another.

Anyway, let's get to it.

You've got what it takes and it will take everything you've got

Pelvic pain clinic postscript

Let's begin with a brief update on the pelvic pain clinic situation. Shortly after all that, I got a call saying the doctor wanted to speak with me again, and could they book a phone call with me in a few weeks. I said fine, because I was trying to be reasonable and give them a chance to make things right. When the phone call came around, I wasn't really sure what it was about or what I wanted to say. My doctor basically started out with (there may be slight inaccuracies because this was a while ago, but generally...), "So, you were feeling anxious at the appointment..." (alluding to my breaking down in tears; I think she was legitimately trying to be respectful by saying this in a pretty non-judgy way). I briefly pondered whether to tell her the truth, that I overflowed with frustration at a medical system that keeps telling me I'm too complex to help, and that I was overwhelmed with grief over all I've lost and the realization that I have so much more to lose because of hitting wall after wall trying to seek care...

Instead I took the easier road and corrected her in a half-assed way, saying I was just really tired after being there for several hours and going through the exams. She said they'd discussed it and were willing to make an "accommodation" for me, that I would get two chances to attend the all-day workshop (which is a precursor to getting any care there from the physiotherapist or counsellor). That if I was not able to make it on the day-of I was to call and tell them (that I could not join in later in the day). And that if I missed it twice, then they would send me the material by email and allow the counsellor to discuss further on the phone if I had questions. (I learned after my appointment that even more accommodation was provided to a friend of mine, in her case, she was immediately provided a home-study copy of the material and phone support without having to go through all this drama about attending the all-day workshop, as she was also not physically able to.) I tried my best to be gracious, and to be "mature" and "logical" about it, and said thank you and that works for me. I was told the admin assistant would call me again to book me into the workshop and appointments. And while I had a chance, I double checked to confirm that there were no physical abnormalities or endometriosis seen in the exam - there weren't.

But the next person I heard from was not the admin assistant, but the program's nurse, who I had already come to suspect was at the core of the initial revoking of the offer to accommodate me on the day of my original appointment. The nurse phoned to review for a second time what the workshop is about. I listened to her politely and said okay great. She made a point to insist how good the workshop was and how important it was that I attend it. I politely said okay great (again), trying not to engage too much with her, and just let her do her job and get through the phone spiel.

But she then decided to re-re-emphasize how important it was for me to be on time, how important it was that I attend the workshop. She was at this point getting extremely patronizing and talking to me like I was a child (and realllly slowwwwly). I told her, yes that I unnnderstannnnd and would either be there on time or otherwise phone to cancel, as I'd discussed with my doctor. She hesitated and I basically said "okay thanks" and wrapped up the phone call as it was getting awkward by then. 

By the time the admin assistant called me later on to book my workshop dates, I had been sitting with this whole situation for a while, and initially I scheduled myself into the workshop. But after further thought and worsening overall health, I changed my mind and called to postpone my involvement to a later session - it wasn't as high a priority for me to deal with it at that time. A few weeks later I got another message to call back about scheduling me. I wasn't sure what to do and thought about it a few days - then got another call. I don't know if I'd been labeled a problem patient by then, but the admin assistant said she'd been having trouble getting a hold of me (leaving one message is trouble?) to schedule me into the next round of the workshop. I said that actually I wanted to postpone indefinitely, and was informed I had 6 months to attend or would need a re-referral.

I said that was fine, and I wasn't sure I was going to attend. She told me it was important to attend, and I said that I believed it wasn't medically necessary and that I was prioritizing dealing with my more pressing health issues. She said it was medically necessary or the doctor wouldn't have referred me into the program... but I explained that the doctor informed me I did not have any physical abnormalities, and so as it was not urgent, I was choosing to postpone indefinitely. She asked if I wanted to be removed from their workshop list, and I thought for a moment and said... sure.

She then asked me if there was a reason I was electing not to continue treatment there, and after hesitating over whether or not to tell the truth, I mustered up enough courage to tell her a brief version of the truth: "My experience there was traumatizing." And that was the end of it. (Or so I thought - my old doctor apparently got a phone call from the pelvic clinic doctor a while back, and I've now told them to have her call my new GP. I guess they follow up on delinquent patients like me...) Even if I did have new pelvic pain issues in the future that were more in line with what they treat, I don't think I'd go back there unless I absolutely had to for surgery or something. I never want to step inside the doors again, and would definitely seek other care options before returning.

Fact of the matter is: I was put through a lot of unnecessary strife both emotionally and physically by them, patronized by multiple members of the staff, and generally treated like a child and a problem. Why would I continue to seek care there, especially since they told me over and over that I didn't even have the "right" kind of pain to be at their clinic? More and more, I'm trying to remind myself that I'm an adult and I get to choose what I do in my life and with my healthcare. Maybe my GP will eventually "reprimand" me (I don't know if I even told her I cancelled on the workshop, though she knows I'm prioritizing only the critical health issues right now...) but frankly I don't care. They were such a disappointment.

Despite my mental health being generally better than ever, I find it's getting worse around medical issues the more horrible experiences I have. I think I've got some kind of PTSD built up, and find myself more stressed than ever dealing with doctors, especially with new ones I'm not familiar with, or any that have unpredictable or aggressive behaviour. I'm working on how to take care of myself better around all of this, and sometimes that's going to mean opting out.

Electrolytes and a flower

Bone doctor

Now, for a polar opposite - I finally had my big workup at the Osteoporosis program at Women and Children's Hospital (I don't usually say what doctors or programs I'm going to specifically, but this one was so positive that I don't mind saying, in case it helps anyone else!) It was far and above one of the best healthcare experiences I've had - I only wish they were practitioners I was going to be seeing regularly!

It was a bit arduous having to do 4 back to back appointments, which is how their program works, but otherwise it was a positive experience. The doctor I saw, who I was a bit nervous about due to mixed reviews online, was a total dream - she was so smart and so thorough, and bonus: actually friendly! She answered all my questions, gave me extremely thorough explanations of everything, and also (not exactly a positive about her, but a big dose of uplifting spirits) gave me good health news! I wish every doctor could be just like her, sick peoples' lives would be so much better!

She said that for now, though yes I do absolutely have Osteoporosis (boo!) I haven't had any breaks yet so they don't know what my risk is, since the risk calculations don't work for people as young as me. She said that if my digestive issues, and potential rheumatological issues, can be worked out and treated that it's very much possible for me to build my bone density back up naturally (through nutrition and exercise, as well as lowered inflammation and increased digestive absorption). So for now, I'm not advised to go on Osteoporosis meds, at least unless I ever have to take steroids for other health issues, especially since there's a fair assumed risk their side effects would worsen my overall condition. I'm supposed to work on my GI health and my level of physical activity (both very much hinging on getting better help for my digestive issues, and chronic pain and fatigue), and stabilizing my overall health. I'll have my bone density re-tested in 2 more years (3 years after the initial scan) and we'll re-evaluate if it's gotten worse.

I also saw a nurse, dietician, and physiotherapist there - the nurse and dietician were good though didn't have too much to add (the dietician would have been more help if my diet wasn't so ridiculously restricted right now). But the physiotherapist, who specializes in physio for Osteoporosis was absolutely wonderful! I got a great evaluation and then an overview of what activities are safe for me to do, and then I went back and got an exercise routine to help strengthen my core and hips. I'm considered a bit of a complex case so I get to do some follow ups there (often people just have the initial workup and then are sent back to their GP or to private physio/dieticians). It's been so helpful to find out what kind of exercise is safe and also most effective for building bone and also preventing falls, as previously I'd mainly been told what not to do to prevent injury and risk of breaking bones.

I'm extremely glad I pushed for a referral to this specialized program, as with being young (for a condition like this) and having complex health issues, I didn't feel that the other doctors I'd seen were very confident about how/whether to treat me and I was getting very mixed messages. Now I feel I have a roadmap to follow for this, including my self-care in the meantime, and I also came out more hopeful than before about what the future might look like for my old lady bones.

Jello hangs

The big picture

Despite my preference towards looking on the bright side, reality is things have been going downhill even faster since around Christmas, only these past two weeks or so have I finally gotten back on more stable footing. My digestive system became a real mess (looking back, I believe some new medications I had started were exacerbating things), new symptoms have cropped up, old symptoms have become worse... In June I ended up in the ER twice (though it would likely have been only once if I'd actually received any semblance of decent care at VGH, that's a story for another time) and was the sickest I'd been in...ever? My weight tanked down to 85, though since stabilizing a couple weeks ago I've more quickly than usual gained a couple pounds back. I'm starting to get weird test results around some of my organ function, and no doctors seem to be concerned...which is only the more concerning to me.

My new GP is okay, but mainly sends me around to specialists - this wouldn't be a problem if I was having better experiences with the specialists. She hasn't dealt with it well when I've disclosed my negative specialist experiences to her, and that's caused some strain (ie. my almost leaving her), but I stuck it out because I didn't want to lose access to the clinic, and anyway things have been a bit better more recently.

My Rheumatologist got very aggressive and confrontational with me when I started questioning him around making a diagnosis (that two of my other specialists have supported, one strongly, one more superficially). It became apparent he isn't very familiar with the condition I've developed symptoms for, and he got quite irate at me and then walked out of his office when I started pressing about it and challenging him with specific questions. It's pretty tricky knowing what to do there, since he's prescribed me meds that are somewhat serious ones, without even giving any indication of what he thinks I may have. After reverse-engineering his suspicions based on things he said I don't have plus what he prescribed to me, I have some theories. This coming week, I'll be going for a second opinion, and extremely hopeful that I'll be able to switch to this new doctor if she is good. With any luck, the new doc will clear up a lot of the confusion.

And last, but certainly not least, I finally met my "new" Gastroenterologist (I'm not really sure if he is my new GI doc because I'm not sure I'm going to stay with him). The appointment was a total (figurative) shit show. It was an ordeal getting there while I'd been having weeks of horrible diarrhea. And then the moment I sat down in his office, I was suddenly on trial for being some kind of nut job doctor shopper. He fired question after question at me like I was some kind of criminal for about 10 minutes, totally wasting precious appointment time. When I managed to tell him (I say managed because I don't think I got a single complete sentence out before being cut off) about the meds the Rheumatologist had prescribed, he seemed to finally accept that maybe I was actually unwell. And also when I asked him if I shouldn't have come to him at all, he slowed down a bit, and asked me why I did come to him. I paused and said: "Well, I wanted a second opinion." He finally seemed somewhat satisfied and responded that, then no I shouldn't have gone back to my old doctor.

Unfortunately, so much time was spent interrogating and intimidating me that he took an incredibly (frighteningly?) limited medical/symptom history, and send me out the door with a stack of test requisitions and prescriptions... Some of which I feel (after a bunch of research into what they are) are very misguided, others which are interesting and new to me. I just hope he gleaned enough info on what's going on with me to look for the right things when I get more investigative testing later on.

Alas, I don't have a lot of options here - he's agreed to do a workup on me that involves doing a gluten challenge (where I eat gluten for the first time in over a decade) so I can be tested for Celiac properly. And he agreed to do a new colonoscopy, even though initially he didn't want to (every other doctor I've seen in the last year has been like "wow, you really need a colonoscopy ASAP). So I guess I'm going to go through the testing with him even though I'm extremely uncomfortable with him and the way he treated me - the alternative is to get on a wait list for my GI doctor from 8 years ago, who I was trying to avoid returning to, and that means delaying everything probably another 6 months which I'm not eager to do right now.

So, generally, that is where things are at - I feel like I should rename my blog "The Rebel Patient" as that's how I feel I'm taken these days... Who knew asking for basic standards of treatment such as 2nd opinions and respect were so outlandish? BC is in dire need of a patient's bill of rights, something like this one I found for Ontario. 2015 has so far been incredibly rough, aside from the 2 good days I had at the start of this week where I felt semi-functional for the first time in longer than I can remember. I even went swimming for the first time in over a year! It was glorious. It was a gift to have fun out in the world - enough to keep me going for this next leg, with the reminder of what it's like to be a functional person. Somehow we keep on keeping on, and looking toward the ever retreating horizon.

Next up is meeting the new Rheumatologist, starting gluten challenge and hoping it doesn't totally wreck me, trying out different meds, and psyching myself up for the scopes (and their terrible prep). This is so much more of a marathon than a sprint, and it's constantly challenging the depths of my patience and optimism. But I'm finding ways to stay hopeful, and stay happy, amongst it all. I'm truly thankful as always for Bruno, and for all of the great people that have stuck with me on this journey, as well as the new friends I've made through it. I'm lucky to have the support I do.

And with that, I bid you adieu till next time. If there's any part of this anyone would like to hear about in more detail, please do comment and let me know, and I will see what I can do. Hope you're all hanging in there, or better yet, doing great! 

Wake me when it's all over

Comments

hang in there. i'm on a similar ride with my issues (GI, neuro, mental health, allergies/sinuses and some other "random" things). i'm so thankful you're writing about these issues and are willing to share; i don't feel so alone.

Hi Erica -

Glad to meet you, but sorry you can relate! It's quite the ride isn't it... One day at a time. Hope you're making some progress as well!

Ariane

Hi Ariane,
I am a first-time visitor to your site. I have read a few of your posts on your health, and I am so sorry to hear what a horrible time you have been having.
I came here because I was looking up acid reflux (specifically "acid reflux and calcium", or maybe it was "and melatonin") and the search engine offered up your site as about the 15th result.
I have been surprised at how many health issues we both have -- acid reflux, extremely low DHEA levels, pelvic pain, allergies and histamine problems (even down to having the same reaction to zinc carnosine, and also being surprised by that since it's supposed to be so great for GERD!)
I have only read a few of your health posts, so I don't know why you went to the osteoporosis clinic. My docs won't test me for osteoporosis until I turn 50, but I'm a little concerned because I've lost quite a bit of height in only the last couple of years. I don't have vulvodynia and some other things that you mentioned.
I do have the worst stage of endometriosis and a pituitary tumor, which you probably don't have.
The thing that I really wanted to encourage you to explore, if you haven't already, is "MTHFR". It's sort of a genetic mutation/variation, and folks who have it often have a number of problems relating to digestion, celiac disease, histamine, mast cells, orthostatic intolerance, multiple antibiotics, repeat infections, vitamin deficiencies, inability to process and expel toxins, chronic fatigue, being accused of "doctor shopping", etc. etc. You can test yourself for it for $99 at 23andme.com. You may have already heard about it, or maybe even gotten tested for it by your integrative/alternative doctor (because you did say in one post that they mentioned testing you for heavy metals, etc.), but if not, I encourage you to look into it. I can't explain it properly here, but there is a lot of information out there online. One site that is okay for some basic information is mthfr.net; a great discussion forum is at phoenixrising.me. I knew as soon as I read an online description of it several years ago that I probably had it, so I tested myself with 23andme (which is a mail-in saliva test) and later had a blood test, and both tests agreed that I do have a tricky combination of MTHFR genetic mutations, which probably underlie many of my health issues.
Good luck to you!

Hi - thanks for your comment! I do know about MTHFR but haven't been tested for it (long explanation I won't bother with, but involves not being comfortable with using 23+me right now). I wouldn't be surprised at all if I did have the gene though, from what I know of it.

Do you do anything in particular that helps you with it?

Add new comment