I got dumped

I’ve gotten so use to “firing” doctors that I was recently blindsided when one of my favorite doctors on my medical team had a heart to heart with me… He informed me that he’s failed me, he’s got nothing left to try on me. He hasn’t fixed my skin issues (itchy episodes, hives, and acne), my scalp issues (bumps and peeling), my hair loss issue (but I’m lucky it doesn’t look like I’ve lost hair yet!), my tongue issues (sores, swelling, and pain), my feet (swelling, blisters, redness, sweating, burning, and pain) or hand (swelling, pain, redness and burning) issues. He’s just wasting my time at this point, he said. So there’s no point in continuing to see him regularly.

Of course if anything severe comes up, I’m to call the nurse line and his nurse will fit me in. He loves seeing me every two to three months but we’re just not getting anywhere. Everything we’ve tried has failed. He finally sees that my body doesn’t like drugs – even the topical kinds. He doesn’t want to aggravate my body by doing a biopsy of my tongue to (dis)prove oral lichen planus (OLP). So we’re at an impasse. I got dumped albeit very nicely. By a doctor who is old enough to be a grandfather and has seen a lot in his day. I’m not gonna lie, it took a lot to not break down in tears in his office, to not feel defeated, and especially to not feel like a lost cause.

I definitely had a meltdown when I got home. After all, I got dumped by a wonderful doctor. Who wouldn’t be heartbroken? So no I won’t be on a search to replace my former dermatologist. I know he’s there if I need him; after all, it was an amicable break up. I will likely still see him one to two times per year instead of more frequently but know it’s just maintenance and no longer a quest for answers. I have the basic diagnostic codes of chronic urticaria (unexplained – of course), geographic tongue (bloody painful), alopecia (a fancy word for hair loss), along with sweating and erythromelalgia (EM) (burning hands and feet). And no oral or topical drugs to help any of the above – only those that aggravated (or if I was lucky maintained the condition as status quo) the conditions after trial and error.

It’s been over a month since I’ve been dumped by this dermatologist, but it’s still a raw wound. They say time heals wounds, I’m hoping it will heal this one too. But in my world, it’s so hard to find doctors who listen, who persevere with you, who don’t rush appointments, and who are patient in answering your questions. He was a gem! So that’s why this one stings – and may for a while even though I know he’s willing to see me in an emergency. It’s just hard to digest that I’ve exhausted this doctor’s arsenal. But I guess that’s what happens with a body that is uncooperative with oral and topical drugs. So I don’t have a moral of the story other than to share being dumped is evidently inevitable and a part of the medical journey (just like in matters of the heart – so instead of boyfriends I have doctors dumping me) – but thankfully in this case, an amicable split. He was also a reminder that there are honest doctors out there too – although a rare find, they do exist (which then of course has me wishing there more like him and my dad – so on that note, a happy belated Father’s Day, dad! I don’t publicly acknowledge you enough on this journey, you may not play my nurse but sometimes you do say the appropriate things to keep me from ragging on all doctors). So here’s to healthy breakups! #sickbutstillsassy

my peeing problem

We all know that I tackle all subjects, even the difficult ones. This one is no exception. While admittedly I am a bit embarrassed or perhaps I’m feeling a bit more exposed than usual, I have decided to forge ahead with this topic regardless. Today’s topic is about my random episodes of frequent urination, formally known as polyuria in the medical world. Yep, brace yourself for yet another not so sexy topic.

For those female readers out there, you may be thinking urinary tract infections (UTIs). But nope, I don’t have UTIs. I don’t have pain while I pee. To be sure, I even had multiple urinalyses that have ruled out UTIs. Next for those of you with Sjogren’s, you may be thinking I have interstitial cystitis (IC). But nope, I don’t have IC either. Again, the pain element is missing. For those of you with POTS, you may be thinking ugh, I have these random peeing episodes too. Bingo, and there is no real name for it – I just call it my #peeingproblem; some say bladder spasms, while some say frequent urination, and others say lower urinary tract symptoms.

So yes, it’s a POTS thing. It comes and goes and is totally unpredictable. It used to come every few months and last about an hour, where I’d pee every five minutes. Then it became a monthly thing where I’d pee every five minutes and last for up to about four hours. Then suddenly in April it happened five times in one month. And I suddenly was questioning my POTS sanity – hello multiple urinalyses later and they’re all normal, whereby restoring my POTS sanity much to my relief and dismay. You see there isn’t much you can do about this POTS symptom; just pee it out.

All but two episodes have struck while I have been at home (mostly because I spend most of my time at home and likely since most of the episodes strike at night though lately they are striking in the afternoons now too). I don’t have a solution – except a recent one of testing a drug DDAVP (stay tuned as it may or may not work to help dry out my #peeingproblem when the attack begins). I am just trying to be grateful that there is no pain just some discomfort in my bladder that alerts me that I am about to go into one of these episodes. So when one strikes I just hope it’s when I’m not having a raging migraine or when I’m seriously vertically challenged because that’s when I usually end up spending half the night in the bathroom – because oh yeah the pattern of the episodes have expanded to eight hours and a combination of every five minutes to hourly. It’s only fitting the #peeingproblem be added to my POTS symptom list; at least it’s a cut and dry symptom (pun intended!) that’s not daily (and hopefully will never become daily) because it sure ain’t a sexy one. #sickbutstillsassy

life ain’t all lemons or all lemonade

They say attitude is everything. Is it? There are days I believe it. Other days, I question it. Some days, I believe I have the temperament and the strength to get through the continued challenges. Other days, I believe I’m ready to give up. I’m not ready to be a prisoner in my own body on a daily basis for the rest of my life. Before getting sick, I was a jet setter. Literally. My cousins in London called me the crazy cousin as I was notorious for arriving on a Thursday (I’d fly overnight on Wednesday from the US) and leaving on a Monday (returning back in the US on the same day). Multiple times a year. Yes, seriously. I adjusted to the time change on a dime, packed in a few minutes, flew through airports, worked through the flights so I could maximize my play time in country. In my current autoimmune world, a trip from Colorado to Chicago in that short time period is barely feasible; in fact, travel is now overwhelming just thinking about it.

It’s so hard to not look back when there’s so little to look forward to. ‎Last weekend was the stone setting of a beloved cousin in London. I obviously was not there. I didn’t even try to go, nor could I even try to go to her funeral last year. Of course it’s easier to accept missing such sad events but even so it’s still a family affair and yet another one to add to the list of sad or happy events that pass me by.

I know I am fortunate enough to have supportive family and friends – and to still have events to be invited to. Symbolically they are reminders that I do still have a life. But for now I’m a prisoner in my own body, watching life pass me by. It’s not what I signed up for but I know it can always be worse. So I may not be standing in the kitchen making lemonade out of the lemons daily, but occasionally I do get to enjoy sipping on a margarita and fondly looking back without feeling like sour grapes err bitter lemons. (For the record, alcohol is not recommended for me nor is it forbidden, so since it does not aggravate my symptoms, I do indulge in wine or a cocktail or two for my sanity when I feel up to it.) So for now, it’s sometimes enough to help recharge my sanity and remind me I am still human. #sickbutstillsassy

no end in sight

Lately I’ve been in a tail spin…some periods of being bed bound, others of being house bound, others of too many appointments, and others of just being over being sick and the crap that goes along with it. There is just seemingly no end in sight. What is seemingly fitting is that my eye issues have ramped up these last few months, where at night, my vision is pretty greyed out. Since it’s been getting progressively worse, we have started chasing the root cause. And so far, and no surprise (at least not to me), no answers.

My one eye specialist is pretty confident that it is not my retinal vasculitis that is causing the vision dimness – but he is now wondering if it caused damage. Since my last two fluorescein eye scans have been stable, which don’t correlate to the worsening of my symptoms, he is pretty confident it’s not the actual root cause but a delayed reaction in terms of damage. Subsequently two additional tests (an electroretinography (ERG) and a dark adaption test) have shed no additional light (yes, pun intended) on what’s going on, so he’s now sending me to a retinal specialist to weigh in whether he thinks the dimness is retinal related or not. If not, he then will refer me to a neuro-ophthalmologist.

I’m sick of my eyes being dilated, I’m sick of new eye tests, I’m sick of no answers, and I’m sick of dimmed/greyed out vision, which has led to way more than my usual number of eye appointments (I’m already on retinal vasculitis and Plaquenil watches!). Because let’s be real, the dimness/greyed out issues are getting worse and quite frankly I’m not ready to lose my eye sight. My eye specialist is convinced I won’t go blind – but while he can shout that from any roof top, he hasn’t been able to provide a rational explanation for the dimness so in my mind his opinion for now is irrelevant and doesn’t bring peace of mind. So until anyone does, no one can convince me that I won’t lose my sight because in my autoimmune world anything is possible. And starting at the end of June (since I can’t be seen any sooner), I can then also add that I am sick of meeting new eye specialists. See, even within ophthalmology there are tons of subspecialties so one doctor can’t even handle my eye care. I know, no end to my eye puns. #sickbutstillsassy

tongue troubles

My sassy self would like to think my tongue issues were that of talking back, how I wish! Instead mine are of the serious variety of tongue swelling, tongue sores, and tongue pain. (I know, yet another sexy topic, but hey I’ve already covered oral thrush before…so time for a new tongue topic.) I have “geographic tongue” but I refuse to get a biopsy of my tongue to rule in/out oral lichen planus (OLP). Whatever is going on is super painful some days – and I don’t need a diagnosis to prove it, feeling (and looking at) it is enough for me.

While I have yet to go into anaphylaxis (and hope I never do, I do indeed have an Epi-Pen just in case, though realistically given my fear of needles, not sure how I would ever inject myself but that is a whole other issue), there are times that I struggle to swallow and talk when my tongue swells. During these extreme cases, I mix lidocaine with some Maalox and gargle. Sometimes the mixture numbs the area thereby relieving some of the pain, while other times it just aggravates my tongue and doesn’t help at all. Beyond this, nothing has helped to resolve my tongue troubles, which have been going on for a while now. Kenalog (steroid topical) paste, the most recent treatment, did not help, nor did the other previous topical ointments.

We have been unable to identify food triggers or any other triggers that cause the swelling, pain, or sores for the past year. My tongue just does its own thing even when no food or beverage is involved.   More troubling is that my dermatologist has now officially run out of ideas on how next to treat my tongue as apparently I’ve exhausted all options (my post would be a lot longer if I went through all the things I’ve tried). So I’m going to try to focus on that the swollen, sore, and pain troubles in my mouth are limited to my tongue and not my cheeks as I suppose being tongue tied is better than being cheeky?! While not fun, hopefully my tongue issues won’t progress even more because currently compared to my migraines they are more tolerable in comparison. #sickbutstillsassy

simple saline | take two

Well after my not so fun or normal reaction to my first saline infusion in January, I was finally ready to attempt a take two. This time however, there were two modifications made in an attempt to address my body’s abnormal reaction: 1) the two saline bags were warmed up to about body temperature (instead of the usual room temperature or cooler) and 2) I would be infused over four plus hours (instead of the typical two hours infusion period, where it’s one hour per one bag). So here’s the recap of my second saline experience from the beginning of May:

While I thankfully did not break out in an awful itchy rash where I wanted to rip my skin off or where I got so swollen that I looked pregnant and so puffy, it again induced an awful headache/migraine that lasted multiple days. So again, I walked out feeling worse than when I walked in. For now, we’ve decided saline infusions are not for my body, much to my dismay as saline infusions are often the treatments that POTS patients love – they get to experience being vertical with so much more ease. But for those of you with (or with suspected) mast cell who also have difficulty tolerating saline infusions, these modifications may work for you! The temperature changes and longer infusion times are known fixes that help ease mass cell type reactions hence why I likely didn’t break out in a crazy itchy rash and was not nearly as ballooned. By the way, an hour prior to the infusion, I also pre-medicated at home this time (per my specialist’s order’s – so check with your doctor first) with one Zyrtec, one Zantac, and one Clonazepam (and no, the mixture of these three pills did not knock me out, I was awake the whole time, sigh).

According to my new migraine specialist, who I recently added to my medical team, he suspects that my head can’t handle too much change – so that two liters of saline is too much; it rocks the homeostasis in my body and triggers a headache or migraine in my case. And unfortunately less than two liters of saline is not really an effective hydration treatment for a POTS patient as the goal is to increase volume by 20%. Perhaps I’ll revisit saline infusions in the future, if my head ever gets back under control, but for now I am not inclined to set it off knowingly and/or create more head rage than needed. Saline infusions are apparently not my simple solution to getting to be more vertical more often so my search for my “miracle” treatment continues.

mother’s day is every day in my world

I don’t think I could ever convey just how lucky or grateful‎ I am for my mom; she is the epitome of the definitions of selfless and generous. Let’s face it, she’s no spring chicken and I’m at the age where I should be taking care of her and not vice versa. But here we are, she (and my dad) have (willingly – and thankfully still ably) assumed the role of caregiver instead of me.

I realize I’m no easy patient. I hate all things medical (I cringe and can’t look at anything), I lose my patience having to direct my mom to the same doctor offices again and again (can’t she remember the way?),‎ we bicker (OK, I pick on her; she can be a good target at times), she pesters me (I get tired of her telling me to “eat something” or asking me “how’s my head?” – I know it’s out of love and concern but can’t she just leave me alone). Yet she continues to put up with me; she continues to help me.

Mothers don’t get paid for their work. They work tirelessly. They don’t get acknowledged or thanked enough. They don’t get vacations. So I get why there’s an official Mother’s Day, to celebrate mothers. Thankfully, my mom dishes some of the crap I give her right back at me so we’re on a somewhat even setting. But most of all, she knows that I appreciate her and knows that if I could help myself I would. But it doesn’t hurt to thank my mom (surprise, my sister got to edit this post instead of you!) and those moms out there who also play the role of caregivers because that is a double duty that is undoubtedly a cause for extra celebration and mention. #gratitude #ilovemymom

disability update | a “periodic” table of events

In March of 2016, I was granted full disability by the private disability company – for all occupations, not just mine – through age 65 (I think, so don’t quote me, as I’d have to find the policy for the exact wording). My lawyer warned me that they are allowed to check in on me and even surveil me. Yes, seriously. But I paid little attention at the time as I was relieved to finally have been awarded what I thought was rightfully mine after hiring a law firm and spending thousands of dollars since 2015 (since my initial denial in 2014, when I hired them after my second denial in 2015, which was based on completely different reasons than my initial one and I knew I had a legitimate case to pursue). Needless to say the “win” did not erase the trauma or bring back the money spent. (Don’t get me wrong, I am fortunate to collect a disability benefit but I should not have had to have fought for it or been traumatized by it. Nor is being on disability a badge of honor I wear, because let me be very clear that I’d rather be a working professional again working crazy hours than dealing with the daily crazy bullsh*t of my chronic illnesses.)

So fast forward to just over a year later, to March 30th of this year, when an envelope arrives in the mail from the private disability company. My heart drops. Mind you, the private disability company has explicit instructions to communicate with me via my attorney. Enclosed is a letter addressed to me, along with a questionnaire for me to complete and a form for my physician to complete (along with a release for records). The letter explains that they have a right to conduct “periodic” checks to determine whether I am still eligible for disability. My heart sinks even further at this line. Periodic, according to Meriam-Webster Dictionary, means “occurring repeatedly from time to time.” Assuming my body continues to be dysfunctional through age 65, I have 25+ years to go. It has been ONE year since I have been fully eligible and I am being checked in on already. This is NOT time to time. This to me is more like “annual”. I continue reading the letter, which gives me and my physician 45 days to comply; 15 days have already elapsed thanks to the postal service so I am already panicking. I am pretty sure that I would be ecstatic if I could return to work and my former life and would be happy to stop collecting my disability benefit in return. I get that there is fraud out there, but seriously checking in on me a year later is ludicrous.

I then start looking at my questionnaire. Any question that requires a yes or no answer in my world sparks immediate anger/frustration because yes or no changes in a heartbeat in my world. So of course I proceed to have a mini melt down over receiving this correspondence, despite knowing that the disability company is “entitled to” do this. I alert my attorney’s office of course. And then begin the dreaded process of completing the form. In my previous life, the form would have been a quick no brainer to complete. In my current state, it takes time, energy, and thinking – because it’s a yes AND no for most answers. My attorney also asked that I write a statement. That’s when the water works really started. Reflecting on the past year was more frustrating that I imagined; it was a snapshot in futility with IVIG failing and Rituxan not yet kicking in. It’s also hard to convey that I look completely “normal” to the average person; most of my symptoms are invisible and so if you see me out, for the most part it’s on a “better” day and I’m putting on a “brave” face to get outside for some sanity.

Then of course I have to contact my PCP to ask him to complete the form. So not only is this a burden for me, it becomes a time suck for my physician. Thankfully he is a saint and more than willing to partake in this insanity. And to write an accompanying letter since the form he has to complete really doesn’t have to do with my condition. Much like my quandary with yes and no, he hasn’t placed restrictions on me as I don’t have an injury, for example.

As for medical records, thankfully for the most part, I have copies so I shared those with my attorney. The records (which are hundreds of pages for just a year!) will be submitted along with the other required documentation to the private disability company. I don’t know how long they will take to determine if I continue to meet the requirements for eligibility. Ironically, I am in a worse state now than I was a year ago. So yes let me revisit the past year, thank you; it does a lot of good for my spirit when all I want to do is move forward, not backwards.

In the interim, I have had and continue to have plenty of nightmares that my disability status will be revoked. One thing is clear is that while I may have been granted the distinction of being called eligible for disability, it is evident that the private disability company really doesn’t believe in its own process because I will be hounded by them until I am suddenly no longer disabled (that would be a dream come true!), age out, or die – because they obviously don’t want to pay the monthly disability benefit. So I have plenty of anger directed at this ridiculous process – periodic my a**. Call it annual or whatever frequency you intend; not generic, because periodic is more prolonged than annual. Being sick is enough to contend with, which I continue to state so while I should not be surprised by this “periodic” check in I sure as heck am disappointed and would love to flip the table to have control over the process, which does not include stressing me out and wasting my time (and not to mention that of my doctor’s), energy, and money. #leavemealone #revampprivatedisability

my love affair with SSDD

With February long gone, it’s kind of hard to keep saying it feels like Groundhog Day. It doesn’t have the appropriate ring to it anymore, especially with April almost nearing an end. (Yes, it’s almost the end of April and my symptom merry go round continues; with nausea being the acute symptom of the month, along with tingling hands and feet and the vile return of night sweats. Actually the list goes on but I reserve the long list for my doctor appointments, it’s too depressing otherwise.) Anyway, recently a friend texted a reply using SSDD. I had to Google what SSDD stood for. Same sh*t, different day. ‎I fell in love with it immediately (thanks, Susan, I love you too, my friend!).

It had a similar concept going for it like Groundhog Day, had a great ring to it, and clearly was hip (unlike me, as I had to Google it after all). It then got me thinking, maybe it was also about different sh*t, same day (DSSD) too. I mean my symptoms can change within the day too. ‎But does it really matter what symptom it is? All symptoms are sh*tty; just a variety of and/or an intensity of. But definitely sh*tty. So I’m stuck on SSDD, in fact I’m still in love with SSDD. So much that I had to share with y’all in case I now start answering with a simple SSDD, and now I’ve saved you a Google, assuming you’re not hip like me. #sickbutstillsassy

 

doctors are NOT gods

Much like when we’re kids, we think life like fairy tales have happy endings. Similarly, I grew up thinking doctors were gods. When I got sick, I expected doctors would heal me…and they did. Not to mention, my dad is a doctor, so I think I was bound by that logic that doctors always knew best.

When my medical journey began, I didn’t seek multiple opinions. Instead, I questioned my own failing body as it continued to get worse and worse over time. Between January 2014 and March 2015, I kept going back to the same “renowned” institution seeking answers with the exception that I had to also find a primary care physician (PCP) in my home state of Colorado (and thank god I did, because ironically he would become one of my life savers, who is still captain of my care team). After my initial visit in January 2014 to the institution, which yielded little beyond diagnoses of “lactose intolerance” and “mild orthostatic intolerance (OI)” – the pervading theory seemed to be that my body was struggling to bounce back from the nine months of the TB medication that I had to take and that I could be suffering from depression; because at that time, the worst symptom I was contending with was fatigue. At this point in my medical journey, I didn’t know enough to question this coordinating physician, other than to know that I felt worse than the inability to bounce back and that I knew I wasn’t depressed. I was “ordered” to drink lots of water (which I already did), increase my salt intake (I already ate a salty diet), purchase medical compression socks, and start a lactose free diet – and that was all folks, besides researching local PCPs in Colorado.

Despite following the “doctor’s orders,” a month later, I did not feel any better. That same month, in February 2014, I would “interview” a local PCP in Colorado, who was shocked that I had not been tested for autoimmune antibodies at the institution a month earlier. Based on my symptoms, history, and family history, he was convinced I had an autoimmune disease. Well readers, he was right – and I finally felt some sort of validation and relief. My blood work came back positive with a very high SSA and positive ANA. That should have been the sign that he knew way more than the doctors at the institution…

Stupidly (hind sight is always 20/20 they say, right?), I contacted the coordinating physician at the institution and she had me return a month later to see a rheumatologist, who confirmed I had early Sjogren’s at that time in March 2014. This is when I was started on my first prescription drug, Plaquenil (the generic known as hydroxychloroquine). Ironically, the coordinating physician at the institution was still talking about depression. So I took the bait and let her send me to a psychiatrist during this visit too. Depression was ruled out – maybe only to her surprise. Yet the coordinating physician still lectured me. I understand that chronic illness and depression can go hand in hand. However, depression was NOT causing my symptoms. And fortunately still to this day, I have yet to succumb to depression; perhaps depression is not in my DNA, perhaps it is my amazing supportive network, or perhaps it is my *sick sense of humor* (pun intended). (To those patients who are suffering from depression, please don’t be ashamed to seek help, if you are not doing so already. Living with chronic illness(es) is not easy.)

My body would continue to decline much to the dismay of my local PCP who continued to monitor me…and I would return to the institution, a year later, in March 2015. The Rheumatologist would add early connective tissue disease to the Sjogren’s diagnosis. And this time my visit would include seeing a neurologist. He would review my files on a computer screen. He would take my “mild OI” diagnosis a step further and say that “I was on the POTS spectrum” and would give me a “migraine” diagnosis as well. After researching what POTS was, I was furious. The tilt table test that I had done in January 2014, more than a year before, clearly showed I had POTS. Forget the “mild OI” diagnosis or “I was on the POTS spectrum” – I had POTS, more than 30 beats per minute within 10 minutes. Later, I would share the results with other specialists who would say, how were you not diagnosed with POTS initially? And by the way, the neurologist never examined me; yet the bill almost $800 said he did. And to add insult to injury, the coordinating physician, continued to tell me that I was just depressed – even in front of my mother.

Funny how this “renowned” institution never even ran autoimmune antibodies (instead it was a local primary care doctor in Colorado who had), funny how they continued to tell me I was depressed, funny how the neurologist lied and said he examined me, funny how they told me I had “mild OI” when I was walking around with POTS. It took not one, not two, but three visits to this institution for me to learn that doctors are not gods. I was finally done with this “renowned” institution after three visits and my faith in doctors would be forever shattered.

I wish I realized doctors are not gods during the first visit – or at least, after the first visit. But I guess you can’t fault me for being persistent and wanting to believe in the medical profession, particularly in the doctors at this “renowned” institution. This experience taught me that unless you have a black and white case like a broken bone, doctors will have multiple opinions, may not care, may not take you seriously, may think you are a basket case, may think it’s all in your head, may think you are depressed, may miss diagnoses completely, and/or may dismiss test results. Needless to say, I have experienced it all except for being called crazy or a hypochondriac – at least not to my face. And I continue to face doctors who don’t deserve to be called doctors. Yet now I am brave enough to “fire” them when I want to, because I don’t have to give them multiple chances to treat me like “crap”, once is damaging enough. I am equally empowered enough now to seek multiple opinions or to have multiple doctors from my care team weigh in when I feel it’s necessary.

I’m also really OK when a doctor says, “I don’t know” or admit when they have made a mistake or take the time to investigate with me. But I am not OK with those doctors who project their insecurities on me or lie. Despite all these devastating experiences, I continue to treat doctors with respect and so I expect the same respect in return, at the very least. I am not perfect and will never be perfect, especially when my brain is struggling to function. We are all human, even doctors. We all make mistakes, even doctors. None of us are god, especially not doctors. As patients we too have a voice in our own care, so don’t be afraid to question your doctors; sometimes it may just save your life.

Please note that I have greatly shortened the events that took place during my three trips to this un-named institution in this post; it would likely be a three hundred page novel otherwise. The dates and other details however are factual and accurate – and continue to haunt me, which is why I am hoping by sharing my experience that patients continue to respect the profession but needn’t be reverent, especially in situations where your character is maligned instead of being properly diagnosed.