Journey 2.0 – TOTALLY TICKED OFF

I’ve always wanted to go to DC…

…but never thought my first time would be for a doctor’s appointment.

Oh, where to start? I have every intention of keeping up on this blog, but as always, the craziness of life seems to get in the way. In any case, a lot has happened in recent months and I thought it was a good time to share. If you’ve been reading my blog, you remember that at the beginning of this year, I started my first Lyme Disease protocol. Around the time I was diagnosed with several tick-borne diseases (including Lyme and Rocky Mountain Spotted Fever), I also discovered I had dysautonomia, hyperadrenergic postural orthostatic tachycardia syndrome (hyper POTS), mast cell activation syndrome (MCAS), possible chronic regional pain syndrome (CRPS), and many other more “minor” issues (relatively speaking, of course). Is your head spinning after reading the terms above? Mine is. I had never heard of any of these things until the last year or so and I’m still trying to get my head wrapped around it all. As mentioned in previous posts, the protocol I started earlier this year was intense – around 200 pills/tinctures/powders/etc. per day, at an insane out-of-pocket cost. I was on high doses of the antibiotic doxycycline, and later added azithromycin, which at those doses and for that amount of time, are hard on anyone’s body. However, when you have been sick most of your adult life, you will try just about anything in an attempt to get better.

When starting the protocol, I also went on an incredibly strict low-histamine diet for 100 days (which my wonderful hubby followed with me). This was to see if it would help the MCAS. I have been on many restrictive diets over the past 2 decades, but this was by far the hardest. Truly, the most severe low histamine diet you can go on is to eat nothing but chicken and rice. And what I found is that no matter how many different websites I looked at to define what this diet should look like, they were ALL different. It was so confusing, and took a bit of trial and error. The common thread was to eat only super fresh organic grass-fed meats, some veggies (and for the ones you can eat, only organic and freshly cooked), no fermented foods, no balsamics or spices, no left-over foods, no spicy foods (my favorite!), nothing cured or aged, no seafood, no alcohol, no dairy, no sugar, no black pepper, no nightshades, etc. The list goes on and on, but bottom line, we were pretty much eating plain chicken, rice, sweet potatoes, and kale for 100 days.

As someone who is a food fanatic, and owns a gourmet food company, this was about as torturous as it gets. Somehow, we made it through. But honestly, I didn’t feel any better. The only thing I noticed is that my neck flushing (part of the MCAS) improved ever so slightly. As positive as I was trying to be, I had a strong inclination that this diet change wouldn’t do much to help my symptoms. A few years back, I asked my then pain specialist if I should do more with my diet than be gluten and soy free (which I have been for over 8 years), and her answer was basically…”Lisa, given how sick you are, those changes just aren’t going to make a significant enough difference to make it worth it”. I gave it the old college try anyway, but slowly started introducing things back into my diet, and I agree, I’m not sure it made any difference. If I was certain that giving up the food I love, for let’s say a year, would make me feel even 50% better, I would do it in a heartbeat. However, I have been told too many times that my body is so severely impacted by these diseases/syndromes/conditions, that food just isn’t the magic bullet. We already eat mostly organic, non-processed, whole foods; and given my love of food, cooking, entertaining, etc., I know I need some “food-joy” in my life.

After five months of the protocol, it was coming upon the summer arts & crafts “show” season for my food business. Knowing how incredibly nauseous and weak the medicines and supplements were making me, I knew I had to take a break from the meds mid-June through at least the first part of August. How frustrating to finally work up to 7 doxycycline (never made it to the prescribed 8) and 2 azithromycin daily, with over 100 other supplements and prescriptions, only to have to quit cold turkey with no marked improvement in any of my symptoms.

Thankfully, my incredible husband (Joel), cousin (Matt), and cousin’s son (Benn) did so much to help get things ready for the shows (loading in and out, and helping to sell the pants off our products), I couldn’t have done any of it without them! I still went to the shows every day, although not always for the entire day. It was hard keeping my erratic blood pressure in check with all the energy I was expending (darn POTS!). For example, one of the days after our show was over, my blood pressure was 226/131. And like always, it went right back down once I laid flat for an hour or so. It’s unbelievably frustrating and life-altering to constantly worry about how standing, talking, or doing just about anything active can have such scary and severe consequences.

After going off the 5+ months of my protocol, I was feeling closer to how I felt prior to treatment – not great, but not nearly as nauseous and weak. I felt more like my previous sick self vs. my new “treated” sick self. However, a brand-new symptom started late spring and has been one of the most painful yet. It was the last week of May when I started noticing that if I brushed the top of my hands against anything, they felt almost raw to the touch. There really weren’t any other symptoms at that point, so I merely thought it was some weird fluke. Let’s face it, my body has a new fluke just about every day. What’s new?

The slight tingling progressed to a more uncomfortable feeling whenever I would accidentally brush them against something rough. It had been weeks and it still felt like the worst sunburn I ever had, yet at that point, there was no redness. By the time mid-June rolled around, and we were at our first show in Edmonds, my hands had turned a deep purplish-red and felt as if someone was holding a lit match to the top of them. Both the Saturday and Sunday evenings after our shows that weekend, it took all I could not to go to the ER. The pain was excruciating. I was in tears (which is not a common occurrence for me). I tried every topical ointment that I could get my hands on (CBD, prescription ointment, over-the-counter salves, etc.), but nothing seemed to help. This went on for months and has still not healed. At this point, my hands usually only get red in the evenings, but anything touching them still causes pain…even when my adorable 8-pound Chug (Chihuahua-Pug mix), Abbey, licks my hands out of love. This is what led my internist to suspect possible CRPS, which incidentally, is considered the most painful disease/condition in the world. Sigh…

Once our summer shows were over, it was time for me to meet with my Lyme doctor and find out what I should try next. Here’s where I got the news I wasn’t expecting. My Lyme doctor is considered one of the best (if not the best) in the Pacific Northwest, and I truly believe she cares about my situation very much. During our phone appointment in August, she more or less said that she didn’t feel that she could continue to help me. She said that about 10 percent of her patients had progressed to a point where they needed more treatment than she could administer. I commend her for having the wherewithal to know the limits of the protocol she prescribes, but at the same time, I was scared and felt even more alone. I had been turned down by so many other doctors, and even had Mayo tell me I was too complicated of a case. What now?

This is how I found myself in Washington DC this past week. When my doctor said she could no longer help me, she referred me to a doctor in Washington DC. Interesting that I’ve always wanted to travel there, but never thought it would be to see a doctor. There is a Lyme clinic there that is apparently world-renowned, with about 10-12 doctors, and a board-certified Lyme MD running the show (board certified MDs that focus on Lyme are a rarity because of the controversy surrounding the disease). It was a big decision to travel this far, but being at a cross-roads once again, I didn’t really feel I had a choice. When I asked my doctor what she thought would happen if I just stopped trying to treat altogether, her answer was that I would be permanently disabled within the next 10 years. So, we packed up our bags, gathered up all my medical documentation, filled out a 31 page new patient intake form, and headed out on last Monday for the big trip.

While Washington state really isn’t that far from Washington DC by plane, when you haven’t flown in over 2 years, it’s kind of a big deal. With my erratic blood pressure problems and frequent shortness of breath, as well as knowing how painful flying is for me, I’m not gonna lie…I had some anxiety going into this flight. My doctor helped me secure portable oxygen tanks for the plane, as well as make sure we had a plan to make it as comfortable as possible. The flight on Monday was ok (way better than the one home), but the pain that hits me the day(s) after flying makes the whole process grueling.

After relaxing in bed on Tuesday, I was as ready as I could be for my appointment. What should I expect from a 3-hour deep dive into my complete medical history? Were they going to think it was all in my head (like so many other doctors had) or were they going to really listen and come up with a new protocol that would give me a fighting chance? Thankfully, not only did they listen intently, they reiterated what my current Lyme doctor in Seattle has said over and over again – “You are extremely sick, we don’t know how you are still functioning, how are you not depressed, and without more rest/sleep, you will never get better.” I can’t reiterate how many times this doctor in DC told me that I need to regulate/modulate work and cannot continue to push myself this hard…as I sat there and and thought to myself that it’s nearly impossible to slow down with my growing business. And the tough part is that I don’t want to slow down!

While she agreed my Type A personality traits have helped me get through my condition thus far, I’m not going to get better if I don’t figure out work-life balance. Oh, the irony! When I left my corporate job almost 2 years ago, my whole goal was to have balance (i.e. no work): however, instead of taking a couple of years off as planned, I bought a company that is growing at a rapid rate. I love it! I love my work! I love what we do! It’s my dream job! And after over 20 years in the corporate world, I have something that brings me so much joy. Yet, it is hindering my progress according to my 2 doctors in Seattle, and my new ones in DC.

Back to the appointment, where I had an a-ha moment right at the start. I have always suspected that the Cephalexin I took in 2002, just a couple of days before all of this started, was the reason I first became ill. I figured that it triggered something in my body, but never had a clue what that something could be. The doctor said it was probably my very first herx (Herxheimer Reaction). Finally! Something that made sense to explain why this hit me like a ton of bricks at age 26! Cephalexin is in the same class of drugs as other meds used to treat Lyme Disease. If the antibiotics kill the Lyme faster than your body can rid itself of the toxins, it can cause a herx reaction, which can throw a person off for days, weeks, or more. It is entirely possible that the very short dose of Cephalexin that I was on back in 2002, was in fact my first unintentional treatment against the Lyme. Unfortunately, no one figured that out at the time.

After that a-ha moment, an hour-plus of detailed questioning, and then a physical exam, there were several issues that came out as my highest priorities to focus on first.

My pain (nerve, muscular, joint, regional “don’t touch me pain”, etc.),
Lack of restorative sleep (for years),
Severe dysautonomia/POTS (total lack of a working central nervous system),
MCAS (which causes a histamine response to anything and everything),
Intense skin and overall body sensitivity,
Total numbness on the top of my feet,
Abnormal reflexes,
Extremely mottled skin (my face is olive toned, but legs and arms are pink, blue, and purple),
Reynaud’s syndrome (fingers that burn, tingle, and turn blue/white when cold),
Lack of ability to digest food,
Swollen and cherry-red joints,
Unbearable back pain with no structural issues (due to Lyme settling there)
and much more…

After spending a couple of hours with the doctor that was assigned to me, she brought in the primary doctor (and namesake of the clinic), who was originally a very well-known HIV doctor back in the day, but shifted his focus to Lyme when the epidemic began to surface years ago. I pretty much expected him to come introduce himself, say “yep, you are pretty sick”, and go on his merry way. However, he spent time asking me questions and did an examination as well. He also brought up an entirely new condition that I should be tested for – because of my erratic blood pressure and constant nasal drainage/sinus issues, he expressed concern that I may have Cerebral Spinal Fluid Leakage. The kicker? There are only a few places in the US that are able to test for this – Duke, John Hopkins, and Cedar Sinai being the most well-known. This means Cedar Sinai…here we come! Not sure what this will entail, but I’m pretty sure it will include a spinal tap, which does not sound fun at all.

As I was getting ready to schedule my next appointment, the doctor who performed my entire examination said that because I am such a complicated case, they decided I should be seeing the primary doctor (and founder/owner of the clinic) going forward. In part, this is a good thing, but it also scares me to think I’ve already graduated to the “big guns. He said if Plan A doesn’t work, we will go to Plan B, Plan C, and so on…i.e. a long road ahead, on top of what has already been almost 2 decades.

At the conclusion of my visit, the doctors reiterated that I’m too sick to start a new protocol. Not surprising. My internist has been saying this for months. Basically, until my sleep and pain are under better control, not only is there no use starting the protocol, I probably wouldn’t be able to bear it. My guess? 4-6 months of trying to get my body to a state where it can take the treatment. The hard part? They want me in DC every 5-6 weeks for the next 1-2 years (or how ever long it takes to be treated). I naively thought I could have my PICC line (IV antibiotics) administered in Seattle, but nope – it has to be at the DC clinic so they can monitor my progress and reactions to the medication changes. Since flying causes more pain and heart racing/high blood pressure, this wasn’t great news? I don’t know if Joel will be able to go with me every time, but I can’t imagine doing this alone.

Despite how I’m feeling about everything right now, I would like to end on a good note. If there is one thing I have learned throughout this whole experience…I’m not alone. If anything good has come out of this, I have seen a tremendous outpouring of love, support, and prayers from friends and family alike. I’ve never been one to ask for help, but just the simple acts of kindness I’ve received, such as bringing me supportive books to read, spiritual and uplifting conversations about life, spending Tuesday evenings with two of my favorite gals, loved ones starting prayer circles for me, people bringing me flowers, friends allowing me the option of 2AM calls and coming all the way to Whidbey to visit me, neighbors helping with the dogs/mail/coffee deliveries, my right-hand man picking up extra stuff at work, and family sending guardian angels my way has been more than I could ever ask for.

My next appt. is a follow up phone call in January to review blood test results and whether any of the new medicines (no antibiotics yet) are doing anything to help sleep and pain. Fingers crossed. Until next time…

And so it begins…

Best laid plans…a phrase I feel myself saying over and over again…a phrase that sums up my complete and total lack of accomplishment in so many areas of my life right now. I am supposed to be much further along in relaunching the gourmet food business I bought last year. I’m supposed to be further into my treatment for Lyme Disease (and the other fun illnesses that go along with it). I knew that traveling to San Francisco in January would be worth it (I mean, how can you pass up The Fancy Food Show!), but also set me back. I may have underestimated just quite how much. While technically, the trip was only nine days, the added prep I needed before the trip, along with the downtime needed afterwards, pretty much wiped the first month of 2019 off the calendar.

Then the short month of February came (and went), and despite working late into the night on several occasions, it took me much longer to finish the company’s new website than I had hoped. Relaunching and expanding a company while coming to terms with a newly diagnosed chronic illness is a lot for anyone to handle, but being textbook Type A makes it just that much more of a challenge. I’ve mentioned that I am a Virgo to a “T” and a perfectionist to a fault, so my idea of “good enough” usually means I have overthought, over-researched, and at times, over-engineered whatever it is that I am working on. I know I need to better prioritize where to spend the little energy I have, but I also know that without the mental stimulation of work, I would have already gone stir-crazy with boredom. I’m definitely still in the learning stage here. How do you divvy it all out? How do you prioritize what you have to do to stay financially sound and mentally challenged, while at the same time mending your broken body?

On top of all this, I have completely shirked my duties as a new blogger. While I certainly recognize this is not my number one priority, I made a commitment to keep up on this blog and gosh darn it, I want to honor that commitment, if for no other reason than the purely selfish fact that writing is actually very therapeutic for me. Granted, I always thought I would hone my writing skills on a food blog, but again…best laid plans. Someday.

And lastly, I had every intention of completing Parts 2 and 3 of my “new normal” portion of this story weeks ago, primarily to explain how my multiple tick-borne diseases, coinfections, and related illnesses manifested themselves over time. It was my plan to write Part 2 as my next blog. However, once I started my first treatment protocol on February 1st, it seemed that all of my grand plans for life in general pretty much went out the window. I’m quickly realizing that it doesn’t matter what I have planned, ultimately, this disease plans it for me. So instead of writing Part 2 this time around, I thought I would chat a little about how this first Lyme Disease Protocol is going.

Today is day 100. I can’t believe I started treatment 100 days ago. If you want to really experience how fast time flies, start a daily journal. Every day, I write down how many days into treatment I am, what meds I took, my pain and weakness levels, what I ate, and other details about how I am feeling. I can’t believe it’s been 100 days.

Unfortunately, there is no one-size-fits-all version of treating Chronic Lyme Disease and its coinfections, and everyone’s experience is different. This is part of the reason these tick-borne diseases are so complicated to treat, as there is no silver bullet. I would go as far as to say there may not be two people in the world who have followed the exact same treatment protocol and have had the exact same results. So, knowing where to start, how you should feel, or where to go next is pretty much impossible. What I do know is that I’m not a doctor, I am not giving medical advice, I don’t pretend to know what is best for anyone (even myself), and this blog is merely to share my personal experience through this deeply personal journey. Ok, now that the legalese is out of the way…

You may be wondering why I go out of my way to constantly use the phrase treatment “protocol”, instead of “treatment”. The word treatment alone does not explain how one fights this disease. The word treatment has a certain connotation. It implies that there is one magic pill, surgery, procedure, medicine, etc. that treats a condition or disease. However, with Lyme, unless you know you were bitten by a tick and/or notice a bulls-eye rash, find a doctor who will test you and/or the tick, find a doctor that will make a clinical diagnosis even if you don’t test positive or have the rash (all with in the first few weeks of infection), and you take a round of antibiotics, and those antibiotics work, and your spirochetes (Lyme bacteria) don’t come back out of hiding and replicate after that early treatment, and…and…and… Unless you are lucky enough to have all the stars align, there is no single treatment for what these tick-borne diseases do to your body once they are too late to eradicate with just a quick course of Doxycycline.

This is why you hear Chronic Lyme patients talk about treatment protocols, which are basically a grouping of prescription medicines (typically antibiotics, anti-fungals, and anti-parasitics), herbal treatments, homeopathics, medical procedures, and more. These protocols attempt to coax the bacteria out of hiding, kill the bacteria where possible, repair the body’s immune system so that it can help kill more of the bacteria, manage the sometimes debilitating Herxheimer reactions (or herxing), and hopefully, eventually make the patient feel a little better; or at the very least, slow the internal damage these bacteria have unleashed on your body. I have no idea how many treatment protocols there are, but it seems that every book or article I read, documentary I watch, or person I speak with, talks about the host of different protocols they have tried, most of which don’t ultimately work. At best they place a person in some sort of remission for a few months, or years, if you are really lucky. And equally as frustrating, the protocols themselves last from several months to several years, meaning you don’t know if any of it is helping for several months to several years. The common thread… patience, patience, patience.

So , with the legalese and boring definition of “protocol” out of the way (thanks for sticking with me!), let’s get to the meat of this story. I think in some ways, my first 3+ months have been exactly what I expected, while at the same time, nothing like I expected all wrapped up into one (clear as mud, right?). I knew it would be hard, I knew I would feel like crap, I knew I would spend a lot of time in bed, and spend a lot of money; and sadly, I also knew I wouldn’t start feeling better any time soon. At least that’s what all the blogs, books, and online groups had to say. All in all, that is a pretty accurate high level summary. However, it’s harder to find descriptive accounts of the day-to-day, not so significant, but oh-so-debilitating symptoms that constantly come and go without warning. Or, the outrageous number of supplements and pills you actually are supposed to take. Or the toll that the enormity of it all takes on your mental health, no matter how positive and happy you are as a person. Or the insane diet regimens you are supposed to follow. Or the very difficult job of explaining any of this to anyone before you have bored them to tears. Or…the numerous other things you find out are wrong with you along the way. Bottom line, Lyme disease and its coinfections wreak absolute havoc on every part of your body, and every aspect of your life as you knew it.

I feel like a yo-yo. I have worked my way up to 75% of one antibiotic and 50% of the other, but because of how harsh these medicines are on your stomach, there’s a constant battle to determine how many I can handle on a day-to-day basis. I was surprised that the very first side effects I experienced from the antibiotics ended up being a worsening of the symptoms I experienced during my first flare in 2002, i.e. heavy and weak limbs, severe leg pain, extreme dizziness and brain fog, shortness of breath/air hunger making it hard to carry on a conversation, and barely having the strength to simply walk across a room. Upon the addition of another medication about a week after starting the doxy, I noticed my shoulders stiffened, arms weakened, and fingers curled to the point that I couldn’t pick anything up. I can only sum up that overall experience as feeling like I had partial paralysis of my right arm/hand. Needless to say, I stopped that medication immediately!

Most other symptoms have just been the usual, but on steroids…teeth that hurt so bad you can’t chew anything, skin so sensitive I cringe with the softest touch (or shower), night sweats that soak the bed, and chills that leave me shivering with my down comforter, a quilt, and my new weighted blanket (which I LOVE!). The one symptom that has surprised me the most is the severe nausea that comes and goes in waves, but knocks me off my feet when it’s at its worst. And then there are the neurological symptoms, and these are the hardest to explain. Ever since my illness started, I have been extremely sensitive to light and sound. This sensitivity is now on steroids. I feel like I have an antennae attached to me, as the electrical currents send buzzing, talking, and musical sounds to my ears. While I used to find it hard to walk into a big box store because of the fluorescents, now just about any bright lights bring on instant vertigo.

While I am very used to not knowing how I am going to feel from day-to-day, I think the ups and downs are much more pronounced than I’m used to. There have been a handful of days along the way that I’ve had a hint of less pain, and I think hey, maybe I’m already responding well to this very early stage of treatment. Then I realize I should have known better. The severe nausea reappears (even on prescription anti-nausea/vomiting meds), the excruciating pain rears its ugly head, the brain fog gets in the way of simple conversations, or I am so lethargic that I can barely keep my eyes open.

It’s not unusual for me to be in severe pain, and it’s not unusual for me to be bedridden for days at a time. I have been more open about this in recent years, and I often get the question, “What kind of pain do you have?”. The hard part about this question is that it changes from day to day, body part to body part, internal to external, and so on. So, I thought it might be helpful to give a couple of examples. First, imagine laying in bed and the nerve endings on the back half of your body feel like they are all on fire, then imagine that your bones ache to the core (like the very worst flu you could ever conjure up in your head), then sharp spikes are being driven into points of your calves and thighs at random locations and intervals. On these days, I typically spend my day in the fetal position in bed, pain meds not doing a gosh darn thing. Or, like the other night, I woke up screaming (scaring the crap out of my husband) because I couldn’t straighten my left leg due to the sharp stabbing pain. Or, like the last three days, my lower back and hips have felt like someone punched me all over, to the point that Joel even noticed the swelling in that area as he so kindly massaged my back. So, when these things happen, I play the usual game of trying to figure out what I did the day or two before that may have caused this particular day’s horribleness. It doesn’t take much; just a drive into the city for a doctor’s appt., or an especially long work day, or spending just a little too much time in the kitchen, or even trying a new stretch that should have brought relief instead. I stopped trying to connect cause and effect years ago, because it seemed to be a useless endeavor. Who the heck knows why one day is bad, but the next day is horrible! And trying to constantly tie these things together can drive a person mad. It’s a giant puzzle where the pieces just never fit.

While not physically painful, managing the actual medications for this disease is nearly impossible. In fact, I would love to see if there is anyone out there that has actually done it successfully. Despite the daily brain fog, I consider myself a fairly competent person, but oh my gosh – the medications! So many of them are to be taken 2 hours before eating, or 4-6 hours after you take this other med, or 30 minutes after eating, or only with food. I think you get the drift. I don’t believe there are enough hours in the day to actually make the perfect pill schedule work. With the help of my husband, I took on the daunting task over the past several weeks of creating a spreadsheet (nerd alert!) to track all of the medications I am supposed to be taking as part of this protocol, including what they are for, cost, dosing info, side-effects, drug-interactions, etc.

This is mind blowing. I don’t even know if you will believe me. I tallied the score…drum roll, please…as part of my current protocol (which includes a few medications and supplements that I was on prior to this particular diagnosis), between the pills, tinctures, powders, droppers, liquids, etc., I am supposed to be ingesting 213 doses of these items per day. Yes, 200+ pills per day, at a cost of $122 per day. Yes, $122 per day. So, before any doctor visit costs, procedures, tests, or other treatments, this is an out of pocket cost of close to $45,000 annually. I don’t mean to overshare the financials, but people need to know that this is a disease affecting a minimum of 300k-400k people per year just in the US, and for those that aren’t treated and cured immediately, this is the cost of their future.

And then there is the isolation. Thankfully, I have a beautiful view out my window and I love my home. That’s a good thing, especially considering I have only left my house a handful of times in the last several months. Thankfully, I have some pretty amazing friends and family that have come out to visit and stay the night when Joel is out of town. Thankfully, I have a business I am passionate about and more work than I can handle, which keeps my mind occupied. My doctor told me this week that it’s in my best interest to stay away from the general public, because, in her words “If you get sick, you’re done.” For a very social person, that’s a hard one to swallow, but thankfully, there are people around me offering incredible support.

It bothers me that I have become such a complainer. When people used to ask me “How are you feeling?”, I would always just say “fine”, “good”, or even “hanging in there”. However, now that people know about this disease, I find myself giving more details and probably oversharing (case in point…this blog). However, I really want people to understand that invisible illness is not only devastating to one’s health, but also their person and their pride, their livelihood, their feeling of contribution, their feeling of what they bring to the table. Your health can be taken away in an instant, in a way that is so totally out of your control. And no matter how badly you want to do the same things, live the same life, get back to who you were, it may not be that easy, or even possible. After being told that it will take 3-5 years to get this under control, after reading about so many people who have attempted unsuccessful experimental treatments all over the world, and after hearing so many first-hand accounts of people giving up their Lyme protocols altogether, it makes it that much harder to see any light at the end of the tunnel. Patience, patience, patience…

Living a double life

Compartmentalizing areas of your life is not uncommon, whether to deal with a tragic loss, unhappy relationship, or childhood trauma, we all do it to some extent. However, sometimes I think that similar to someone with a split personality, I truly have no choice but to compartmentalize my illness and exist as two distinctly different people. My friends and family know me as Lisa, the person who is almost always smiling, an animated conversationalist, perfectionist (to a fault), cooking fiend, lover of makeup and my Free People wardrobe, and terrible at asking for, or accepting, help.

Only my husband, Joel, knows the other Lisa, the person who doesn’t smile enough anymore (despite his charm and witty sense of humor), who spends the majority of time at home in bed, barely has the stamina to take a shower or wash her hair – let alone put a speck of makeup on, lives in Tommie Copper compression wear, watches way too many cheesy Hallmark movies to pass the time, and couldn’t make it through the day without his help. This is the Lisa that can’t sit or lay down without an ice pack or heating pad, complains about pain and a million other symptoms on an hourly basis, has a supplement and medication schedule that would make a PMP-certified project manager’s head spin, and hasn’t had a good night’s sleep in years.

While this may all sound like I am being disingenuous to the majority of people in my life, the truth is – I AM the first Lisa. This other Lisa, the one that Joel has so compassionately taken care of for all these years, is not me. Invisible illness has stolen my identity in a very unique way, and has made the fight for an answer so much harder. I have been told on several occasions that because I work so diligently at putting myself together on the outside, it has made it much more difficult for people to believe what is going on in the inside. I get it. There are diseases that are much more visible, and I think my own stubbornness and sheer will has prevented me from making this disease more visible. I can think of several situations in the past year that I would have greatly benefited from a wheelchair, but would I get one? No. I have often considered a disabled parking pass, but have I applied for one? No. Considerate friends and family often ask to help me carry things, but do I ever ask them first? No.

The majority of people out there with invisible illness are living this double life because the alternative is no life.

On one hand, nobody wants to hang around someone that constantly looks sick, acts sick, and talks about being sick. So, some level of hiding an illness helps to maintain friendships, a career, and a life outside of being sick. Without the occasional coffees and lunches with friends, trips to the grocery store, or date nights sitting at the local watering hole with Joel, I surely would start to lose my sanity. The lack of human interaction and isolation that chronic illness brings is certainly not good for one’s mental health, especially if that someone is an extrovert by nature.

On the other hand, those who haven’t experienced chronic illness may wonder how someone so sick can go to dinner with friends, hold down a job, or take a vacation. And as for the hair and make-up, I actually didn’t care about that stuff until after my illness started. I often tell people that the days I look the best are often the days I feel the worst. Those small, seemingly vain, outer appearance tools can help a sick person feel just a little more normal. Unfortunately, it’s the “looking healthy” part that unfairly delegitimizes invisible illness for so many.

It’s a true situation of “you’re damned if you do and you’re damned if you don’t”. This is the reason I have rarely posted anything on my personal Facebook account over the past year. I truly believe social media, where I posted images of happy moments in my life, could be one of the reasons I was turned down after applying for just a few months of Short Term Disability insurance last year, a policy I had been paying for my entire 20-year career. I didn’t look sick enough.

I want to be clear that I’m not writing this to throw my own pity party, but instead, I write this to raise awareness that there are so many people you interact with every day that could be living this same double life. Something I learned a long time ago is that everyone has their unique cross to bear in life, whether it be a tough marriage, mental illness, financial instability, or other invisible challenge. Despite trying to keep this in mind, I also catch myself forgetting this important lesson in empathy from time to time.

Even after writing this, and exposing this double life, I will still be that same Lisa when you see me next, the one with the big smile, who talks a lot, and loves her makeup. Although I have certainly been more vocal about my illness over the past several months, I still try to compartmentalize and not completely burden friends and family with a constant barrage of complaining. I now have a blog for that ;).

Timing and San Francisco

Something interesting to know about me…for some reason, I seem to attract bad luck (ask my old boss, Mike, who called me the Angel of Death – in jest of course!). The first major stroke of bad luck came on my husband Joel and I’s wedding day, December 29th, 1996. We planned a beautiful winter wedding in the Seattle area during Christmas break our senior year in college. With most of my extended family still living in the Midwest (where I’m from), they were surprised we would plan a winter wedding. Aren’t you worried about snow, they asked? Of course not! It doesn’t snow in Seattle, I say!

Well…I think you can see where this is going. The wedding story might be better suited for another post down the road, but needless to say that nothing about our wedding went as planned due to the largest snowstorm to hit the area in over 50 years. Bad timing for sure.

Yes, my timing always seems, shall we say, interesting. A perfect example of this is the fact that after 20+ years in the tech world, I finally have the job of my dreams. Exactly three days after turning in my resignation, I learned that one of my favorite gourmet food companies was closing. The business was still doing great, but the owner was ready to retire. Here was the best opportunity I had been presented in my career, but maybe not at the best time. I couldn’t say no.

I bought the company and now make and sell the most delicious and unique oils, balsamics, salt, and spice blends. I struggled with the decision, knowing that I had already left my corporate job to spend more time figuring out what the heck was wrong with my body; however, how in the world could I pass this up? After spending the first few months of 2018 lying in bed most of the time, trying to heal, I realized I wasn’t really feeling any better and still hadn’t found a doctor who could help solve my puzzle. This proved to me that stress wasn’t my problem (which so many doctors always tried to chalk it up to). My brain was not being stimulated, and as a Type A person, this was not a good thing.

So, I signed the papers at the end of June, right about the time that we were noticing my blood pressure and pulse being a little off, later to be diagnosed as Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, or Hyper POTS, for short. As a quick side note, this is where both blood pressure and pulse sky-rocket as soon as you are in the upright position My blood pressure was extremely low after laying down for a while (we’re talking 80/50 low) and then crazy high by late afternoon (200/120).

On the one hand, my summer was spent diving into the excitement that was my new business! On the other hand, I was a guinea pig for the blood pressure medication industry. After trying over 10 different BP meds, I’ve sort of settled into a combo of 3; 2 of which I take on a regular basis and 1 that is for emergencies. We’ll see if this is the long term solution, as it has killed my eyesight and caused insane lethargy. For someone who hasn’t taken a nap in over 10 years, I could sleep all day on this stuff!

Bringing it back to the present, after getting my multiple-tick borne disease diagnosis and all of my other abnormal blood test results on December 28th, I have spent the time since obtaining the first round of prescriptions, supplements, and other related Lyme protocol items so that I can begin tackling this enormous challenge. While I really want to start it ASAP, we already had a work-related trip planned to San Francisco. I use the term “work-related” loosely here, as this event we are attending might just end up being my version of heaven – the Fancy Food Show, the largest specialty food and beverage show on the West Coast, where we get to check out all of the latest and greatest food trends, products, packaging, branding, etc.!!

I’ve known about this show since I bought the company, and because I haven’t been able to fly for several months, I figured it was out of the question. But then the crazy idea popped into my head! Why not drive down? So, yep – that’s what we are going to do. We are leaving tomorrow, and in an electric vehicle, to boot…which should make it a very unique and interesting adventure. I’m so excited for this event, but also very nervous. I know I should be starting my new medication protocol right away, or at least resting up before I start. Even without the risk of “herxing” (https://www.lymedisease.org/lymesci-herxing/), I know this kind of trip would land me in bed for several days after. I know I’ve committed to rebuilding our company’s website and launching it by end of month. I know I’m pushing myself too hard once again (nothing new here), but timing is never quite on my side.

Hopefully, in this case, it will be worth it!!