Swim Upstream

Me vs. Chronic Lyme Disease

[mylymedlife]

This Story Will Make You Mad.

When you have chronic lyme disease, it can be very hard to know who or what to trust. This story is a perfect example.

When I was diagnosed with chronic lyme disease in 2013, I was also diagnosed with hypothyroidism, as I had low T3, which is a hormone produced by the thyroid gland. I had an unusual situation, as I had low T3, but normal TSH (Thyroid Stimulating Hormone). Normally, if you have low T3, you also have high TSH. But I didn’t.

Apparently, this was cause for concern, as one situation that produces low T3 and normal TSH is a brain tumor. So, my lyme doctor ordered an MRI of my brain. You can bet I was super relaxed about that. Thankfully, I did not have a brain tumor. Thus, my doctor said the lyme infection in my brain (it breaks through the blood brain barrier in the first 48 hours) was interrupting the communication between my hypothalamus and my pituitary gland. The two need to be on good speaking terms in order for the thyroid to function properly.

My lyme doctor recommended thyroid hormones. This turned into a major discussion, because a functional medicine doctor I was seeing at the time implored me not to take the thyroid hormone. He basically said it would goof everything up and that there were more natural ways of dealing with my thyroid issues.

At the time I was dealing with severe fatigue. As in, we were on a previously planned trip to Disney and I had to use a mobility scooter because there was no way I could have walked the park. That kind of fatigue. Can you imagine?

I didn’t know who to believe about the thyroid medication, but I knew something needed to change in the way I felt, so against my better judgement, I decided to take the thyroid hormone.

I have seen two different lyme doctors since the one who originally prescribed the thyroid hormone, and they both recommended I stay on it. Over the years, my T3 levels were closely monitored, with blood draws very six to eight weeks, followed by medication adjustments, if necessary.

Fast forward to fall of 2017. Suddenly, I’m having all sorts of issues with regulating my body temperature. I have a history of always being cold, but suddenly I was always hot. Like, really hot. I spent the harsh Minnesota winter in a sweat. Sometimes I’d walk around the house half naked. I’d be in a public space, and I’d note I was wearing a t-shirt while everybody else was bundled up in sweaters and jackets. 

I know what you are thinking. Menopause. While I am of a certain age, I’m still menstruating, so that wasn’t the issue. 

When you are being treated for chronic lyme disease, you tend to move away from traditional western medicine practitioners, because they look at you like you are crazy when you say you have lyme disease. It gets old.

But the body temperature thing was really bugging me, and I had a hunch it had something to do with my thyroid. So, I made an appointment with an endocrinologist. 

After starting the meeting with the standard “I know you don’t recognize this, but I have chronic lyme disease” conversation, I told the doctor about my past thyroid issues, along with my current symptoms and medications.

He asked to see my blood work from before I started the thyroid hormones, which I had on hand. Sadly, I’m a pro at this, and anticipated his request.  He then asked the million dollar question. He said “How much did you weigh when this blood work was done?” I told him I didn’t know for sure, as it was many years ago, but I guessed it was south of a hundred pounds.

To which he said “I don’t think you were hypothyroid. I think you were starving. When your weight gets too low, things don’t work right.”

When he said that, tears literally popped out of my eyes and rolled down my face. I didn’t even care. I was completely unselfconscious about it. Why was I crying? First, I never wanted to take those damn thyroid hormones in the first place, and it turned out I never needed to. So, that pissed me off. Second, it just reinforced how difficult it is to navigate the lyme jungle. I had not one, but three lyme doctors tell me I had lyme related hypothyroidism, and that it was critical for me to take the medication. In that moment, I was just so exhausted on navigating conflicting medical opinions.

The lyme doctors didn’t make any money off the medication, so I can only believe they had the best of intentions, but still. It’s just infuriating. There are many risks associated with taking thyroid hormones, and it turns out I unnecessarily exposed myself to those risks for four years. Not to mention, taking thyroid hormones is a huge pain in the butt. You have to take them first thing in the morning, one hour before any food, drink or other medication. Psychologically, it never made me feel good to roll out of bed and pop a pill first thing. It just sends the wrong message. I’m sick. I need medication to function. I hated starting my day that way, and I’m getting mad all over again as I write this.

But back to my appointment with the endocrinologist. Once he handed me a tissue and I stopped crying, he suggested I discontinue the thyroid hormones, and then come in for a blood draw in three weeks, once the medication fully cleared my system.

You can already see where this is going. My thyroid labs were completely normal. I was taking medication for no reason. In fairness, I have gained 26 pounds in the last two years, so that likely has something to do with my T3 levels coming back into the normal range.

Two things have happened since I discontinued the thyroid hormone:

Over the course of a few months, my body temperature issues resolved, and I am no longer overheating.

I started to gain weight at an increased clip.

When I noticed my increased weight gain seemed to coincide with discontinuing the hormone medication, I emailed the endocrinologist to ask if there was a correlation. He said there absolutely was. So, all these years, when I have been struggling to gain weight, the thyroid hormones were playing a role in holding me back. My GI system is still totally whacked, so I can’t put all the blame on the thyroid medication, but let’s just say it wasn’t helping anything.

I’m still pretty mad about all this. Yes, it’s true, I did have low T3 at one point. But I’ve learned it’s also true that not all thyroid deficiencies need to be treated, particularly if there is an extenuating circumstance, such as dramatic weight loss.

Here is the moral of the story. You know that expression “to a man with a hammer, everything looks like a nail.” I think that’s also true of many lyme doctors -- everything looks like lyme to them. And that’s my advice today -- if you have chronic lyme, or chronic anything, be on the lookout. It’s too easy for doctors to just blame everything on your chronic condition.

For whatever reason, I always had a nagging feeling my thyroid issue was not lyme related, but I never acted on my hunch because I had three people who had gone to medical school telling me I needed to be on medication, and I figured they were in a better position to know that than I was. Well, that turned out to be misplaced trust.

I am sad to say that after nearly five years navigating the mess of chronic lyme disease, I truly don’t know who to believe or who to trust. I think the fact of the matter is nobody has chronic lyme completely figured out. Not western medicine doctors, not functional medicine doctors, not lyme literate MDs. Nobody. Everybody has their own theories, and I believe they believe them. And I think most practitioners who treat lyme patients have nothing but good intentions. But I can’t help feeling like a human guinea pig. 

We are still on the frontier of this epidemic, and until it gets more attention from the CDC and Western Medicine, there’s not going to be a standard treatment protocol, which means people are going to continue to struggle to get proper care, and will occasionally get sent down errant rat holes, as I did. 

I realize this is more negative than I tend to be, but lyme disease is a bitch, and people who suffer from it have to work way too hard to get well, as they are simultaneously fighting the disease and the system.

I know things could be much worse, and I need to hang on to that perspective. I have learned so much from being sick, and I would never give those lessons back.  But lyme disease has taken much from me, and I have sadness and anger about that. Buy I will never stop trying to regain what I’ve lost. Never. Ever.

[mylymedlife]

My New Dawn.

If you’ve been reading for a while, you know I love a good walk at dawn. It heals me and fills my soul in ways I can’t adequately describe. There is just something about the stillness of the earth at that hour that speaks to me. Plus, I am usually rewarded with beautiful plays of light. It’s worth getting out of bed for.

But my dawn walks are now taking place in downtown Minneapolis, and let’s just say it’s less peaceful. Even at six AM, busses and trucks are roaring, cars are humming along, and I am joined by many other early morning walkers, bikers and runners.

Every morning, I’m wondering what all these people are doing in “my” dawn. 

Suffice to say, my walk isn’t really giving me what I need. I am an introvert, and I crave solace, but I can officially tell you solace is difficult to come by when you live in an apartment building in an urban area. I guess that’s obvious.

Periods of quiet are essential to my ability to manage my anxiety and fatigue, and I’m not getting enough of those lately. So far, that hasn’t sent my anxiety into a rage, but you can believe I’m paying close attention. I’m also doing whatever I can to carve out moments of solitude. I’ve created a tiny nook in our bedroom for just this purpose, and it seems to be helping.

I’m telling myself not to get too worked up over any issues I have with apartment life, as it will be over in two months (see previous post if you are confused).  My verdict so far -- I don’t urban living, and I’m not unhappy, but it’s definitely not for me long term.

I need to watch what I wish for, though. By July we will be living in a town of 400 in the Virginia countryside, and I will have all the solitude I could ever hope for. 

Life is a balancing act, right?

[mylymedlife]

Ugh.

I am woefully behind on my blog. Life has been unmanageable, and the blogging went out the window.

As you can see, we are moving. Across the country. Long story short, my husband is from Virginia, and our daughter, who is about to graduate from high school, decided on her own to go to college in Virginia. That was my husband’s “get out of jail free card” from Minnesota winter. You see, he’s a southern boy, and has now spent 17 winters in Minnesota, and he’s done. I can’t say I blame him

But here’s the situation. I’m from here. I have many friends and family here, along with my trusted therapist and hairdresser (both essential to my well being). And until 16 days ago, I was living in a home that represented perfect happiness to me -- a warm, tranquil, sturdy family home in a killer neighborhood. I have been crying for months about leaving that home.

But in the process of grieving the loss of our house, I learned the difference between bricks and mortar and home. A house is just a house until it is filled with people who love each other. And for that reason, home will be wherever my husband and daughter are.

Currently, that means home is a rented apartment in downtown Minneapolis. Our house sold much sooner than expected, so we are in temporary housing until our daughter finishes up school and a couple of important rock climbing competitions.

In the meantime, the contents of my life from the above photos are on a truck, driven by a stranger, presently somewhere between here and Irvington, Virginia. Ask me how weird that feels. I’d tell you, but then I’d have a breakdown.

My husband left today to meet the truck and oversee the delivery into our new home. I could not go because I am too exhausted from all the disruption of moving. And I developed a horrendous virus in the middle of it, from which I’m still recovering.

My stuff if on a truck, I’m living in an apartment, my daughter is about to graduate from high school, we are moving across the country soon.

How do you think I’m doing with the anxiety? Honestly, better than expected. I’m trying to simply take things as they come and keep things as moderate and balanced as possible. There was a two week period where I felt my head might blow up from trying to keep track of so many details -- a double move is VERY complex, plus I was trying to plan my daughter’s graduation party in the midst of it all. And keep regular life going -- school lunches, grocery shopping, laundry, making dinner, etc.

But somehow, I am surviving. I really and truly don’t wnt to move. But my daughter is excited about college, my husband wants and deserves to move home (he moved here, after all), so if I wish to remain part of my family (which I do), my one and only option is to move east.

Some days I’m Ok wth it. Others, I cry a lot. 

The best days are when I try to let go of the regrets, and the fears and the what ifs, and just try to see this as part of a larger plan. I’m trying to remain focused on gratitude for all I had here, while keeping my mind open to the upside possibilities of my new life. Truthfully, some days I do better than others, and I think that’s ok.

This is a period of transition, and transitions are never easy. I think the only mistake I can make would be to expect it to be otherwise.

I will keep you posted.

[mylymedlife]

I Love Writing my Blog, but I Am Not a Blogger.

Are you confused? Let me try to explain.

I enjoy writing these posts. They help me, and my most sincere hope is they help someone else. But the reality is cultivating an online audience requires more or less constant social media activity. And that’s just not me. 

For example, we recently returned from vacation in Mexico. If I was a blogger, I would have been posting the entire time, as there was so much opportunity to show how I manage my illness while traveling. But I didn’t do that. It’s not because I don’t care or don’t want to help others.  I didn’t post during vacation because I have learned that once I go down the posting road, I start looking for Instagram Moments. And when I start looking for Instagram Moments, I start missing the Actual Moments. Instead of really feeling and soaking up each experience, I’m thinking of the perfect headline or trying to get the perfect shot.

I didn’t want to spend my vacation doing that. Instead, I wanted to be present with my vacation and with my family.  I didn’t want to be present with my phone. In fact, I aggressively avoided my phone. 

So, I’m not really a blogger.

But if I was a blogger, here are some of the things  would have told you about traveling while living with chronic lyme disease, anxiety and fatigue:

We packed heavy. I brought an entire extra suitcase, which we call “The Bag of Life”. It contained three tubs of protein powder (remember I am on a liquid diet), a bottle of liquid coconut oil (for my protein shakes), along with various supplements and powders I need to make my life work. ( I did not photograph our huge pile of luggage, because I wasn’t being a Blogger).

We also brought two boxes of food. I know. It sounds funny. But I have several food intolerances, and so does my daughter, and many of the foods that are safe for us to eat are hard to come by in Mexico, so we brought our own. I ordered from Thrive Market, which is sort of like an online Costco for natural and organic food. You pay a small annual fee, and in return you can buy at a discount and in bulk. Free shipping on orders over $50. They do an amazing job of packing the food so it doesn’t get destroyed, so it was an ideal option for the airplane. We simply checked the boxes, and everything arrived intact. (same comment as above on the lack of photo).

We went to the grocery store to pick up fresh fruits and vegetables to supplement the packaged goods we brought (cilantro photo above).

As always, we stayed in a home with a full kitchen, and we ate most dinners at home. My family was actually very happy with that option, as the setting was beautiful, and everybody feels better with home cooking. (again, no photos. I was focused on eating and laughing).

When we did eat out, we had the concierge call the restaurant and explain our food allergy situation so there was no difficulty or confusion caused by language barriers.

Every single morning I took a walk at dawn (pool photo above). My dawn walk is an essential component of my anti-anxiety regimen. That walk soothes, centers and calms me. But it only works if I go while the world is still largely at rest. There’s just something about the feeling in the air at that hour. For me, a dawn walk is medicinal. A walk after dawn is just a walk. 

We were gone over Easter, so I surprised my daughter (and her friend, who is like a daughter to us) with Easter egg dying supplies. (egg photo).

There is a stunning chapel on the grounds of the resort where we stayed (bottom right photo). I discovered it on one of my dawn walks, and the sight literally stopped me in my tracks. There was stillness all around. First light had just broken. And here was this chapel, doors flung open, lights ablaze. It just beckoned me in, and I dropped to my knees and felt God’s presence. Experiences like that are one of the many reasons I walk at dawn. It would not have been the same at high noon.

Neither my daughter or I can tolerate onions, which obviously rules out most restaurant food. But the great thing about Mexico is the guacamole is usually made table side. So, we simply asked them to hold the onion (guac photo). It was such a treat for my daughter and I to get to actually eat guacamole at a restaurant. You have no idea.

I lost my beloved brother a few years ago, and orange is the color we use to remember him. Orange is always popping up at the most unexpected moments. One morning on my walk, I came across orange flowers scattered along the path, so I put one in my shoe so my brother could walk with me. (shoe photo).

You may think I look thin in the top three photos, but I weigh significantly more than when we made this same trip last year. It’s a joy for me to see the difference. And I am no longer adverse to having my photo taken with bare arms, which I avoided for years because I looked so skeletal. Credit my liquid diet for the weight gain. (PS -- my daughter is a rock climber and extremely buff, so you can’t compare my arms to hers).

To keep my fatigue in check, I made sure to plan down time each day, and I got plenty of sleep. Both are critical for me. (no photo).

So, there you go. The vacation I would have blogged about if I was a blogger.

[mylymedlife]

Home From Vacation Saturday. In Bed Most of Sunday.

Here’s something that never ceases to amaze me. When we go on vacation, somehow, I always manage to hang on just long enough so my fatigue doesn’t interfere with the fun. Then when I get home, I collapse. It’s sort of like the car running out of gas just as it coasts into the garage.

It happens every time we go somewhere. The first morning home I will wake up feeling relatively fine, but as the day goes on and I attempt the tasks of re-entry, my brain and body begin to melt down. Slowly at first, and then all at once.

It’s not like I need a nap. It goes significantly deeper than that. My mind and body get so fatigued that I literally can’t think or function. It’s a sensation of being completely overwhelmed by the normal noise and rhythm of life. It’s hard to describe exactly what it feels like, but let’s just say it feels super crappy. I basically want to escape my own body because it’s so unpleasant in there.

Sitting in my resting chair brings no relief. Chilling with a movie is not an option -- the stimulation is overwhelming. When it gets this bad, there are really only two remedies: bed and silence.

I have to be in bed with the covers pulled way up. The weight of the bedding somehow shuts out the stimulation and noise of life. It comforts and soothes. Releasing my head to the softness of the pillow allows my brain to relax and rejuvenate.

In these moments, I’m reminded of a hair dryer that overheats. It gets so hot it has to shut down in order to save itself. And there’s only one thing that will get that hair dryer to turn back on. Time.

It’s the same for me. As frustrating as it can be, when my brain and body shut down, the only option is to lay down and wait. It feels awful at first, but the longer I lay in the stillness and silence, the better I feel. After a few hours, I might feel up to reading. And after a few more hours I might feel up to sitting in a chair.  It usually takes most of the day for my fried circuits to cool down and start functioning properly again.

In an ideal world, I would always manage my life and my activities so I never got to this point. But sometimes, I put fun before fatigue management, knowing I will pay a price later. If I avoided everything that makes me tired, I would miss out on a whole lot of laughter, love and general enjoyment of life.

Did I enjoy the way I felt yesterday? Absolutely not.

But I most definitely enjoyed the seven days that preceded yesterday.

My daughter will be off to college soon, meaning family time is more precious than ever, and I am soaking up every last drop before my little nest empties out.

Sometimes, that family time comes at a price for me, but it’s one I’m happy to pay.

[mylymedlife]

Things Are Looking Up.

Last week was a good one. For starters, my raging nerve pain (you can read about it here) responded to my second cortisone shot. The pain is not completely resolved, but it has gone from excruciating to annoying, and I can live with that.

The real big news involves stepping on the scale, which I did last week for the first time in months. I weigh myself only sporadically, so as not to obsess about gaining weight, and to avoid disappointment, as the weight is coming on ever so slowly.

But it’s been a while and I just had a feeling the news would be good. Well, it was beyond anything I could hope for. I weighed a whopping (for me) 105. I stepped off and on the scale four times just to be sure it was real. And then I weighed myself again two days later. Again to be sure. 

Getting this far is incredibly significant for me. If you’ve been reading for a while, you know I weighed 81 pounds a year and a half ago (I’m 5′6″). I don’t have the words to describe the terror involved in weighing so little. I could count every rib. My arm bones were protruding. My abdominal area was concave. My hair was falling out. Now I wish I had a good photo from that time, but it was not a moment I wanted to capture. 

I weighed 118 when I first got sick. And that reflected a recent weight gain due to strength training. So really, I was about 115 before I added muscle. I long ago gave up on ever seeing 118 again, as it was a stretch to get there even when I was healthy. But I told myself if I could just somehow, some way get back to 110 I’d feel pretty good about life. 

Well, I’m within spitting distance of 110. There were so many days when I never thought I’d get this far. For eight years all I did was lose weight in spite of desperate, frantic attempts to do the opposite. It was torture. And terrifying.

But here I am. 105. I don’t have the words to tell you how hard I fought, clawed, and scraped for every single one of the 24 pounds I have gained. It has taken maniacal, ruthless determination and dedication. And I had to give up most solid food. Yes, I’ve been on a primarily liquid diet for the past year and a half. I eat real food once per day, and the rest is a special, pre-digested protein shake called Absorb Plus. 

And that’s where we come to the mixed blessing of all this. While my weight gain is fantastic, it has happened because of a band aid (liquid diet) and not because anything in my GI tract is actually fixed. Many have tried but none has succeeded in unlocking the mystery of why my GI tract shut down. The Mayo Clinic diagnosed a severe motility disorder of unknown origin, lyme doctors say it’s because of lyme disease.

The Mayo Clinic had no answer except hope and a feeding tube. I said no thanks to that. 

Lyme doctors tell me if I can get rid of the lyme my GI issues will improve. Maybe they are right, but maybe they are not.

I’m in a very vicious cycle. Part of the reason I haven’t been able to kick lyme is because the road out of lyme goes through my GI tract, which cannot tolerate the medications commonly used to treat chronic lyme disease.

If I think about all this too much I become overwhelmed and afraid and it all feels so hopeless. Will I be on a liquid diet forever? Will I ever really solve my GI problems, or will I always be covering them up with band aids?

I don’t have any of those answers. And when I get overwhelmed, I simply bring myself back to the present, and focus on what I can control. I remind myself I’m gaining weight. I remind myself I’m not dealing with stomach pain, nausea and feeling unpleasantly full 24/7. Those are all big, important things, and are not to be overlooked.

I’m meeting with a new GI guy in a couple of weeks. Maybe he will have some new ideas and answers. Or maybe he won’t. Who knows? The only thing I know for sure is that I will never stop trying. 

I have 110 in my sights, and I will not take my foot off the gas until I get there. 

The rest will sort itself out one way or another. 

[mylymedlife]

Pain Versus Suffering.

I have been in near debilitating pain for the last two weeks. This particular situation has nothing to do with lyme disease, and while excruciating, it is much easier to tolerate.

Let me explain.

First, the pain. I fell on the ice a few weeks ago, and ended up herniating a disc in my neck, which led to screaming nerve pain across my left shoulder and down my left arm. I have had nerve pain before, but this is a whole new level. It’s like electricity. 12 out of 10 and I’m not exaggerating. 

Thank goodness, I am comfortable when sitting in a soft chair, and when laying down. However, I can only stand for 5 to 15 minutes before the pain becomes intolerable. I have been literally yowling in pain. The photo above is from a cortisone injection a week ago, which did nothing to ease the pain. I had another one today, and it will be a few days to know if it helps.

While the pain is physically exhausting, it is not wearing me out emotionally. That’s because I can see it as something explainable, it’s easy to understand, and I know it will eventually pass. I’m prepared to gut it out, whether it’s another day, week, or longer.

It’s just pain, and it will pass.

Lyme disease is different.

It’s not easily explainable. It’s hard to understand. And I don’t know if it will ever pass. I would say the same about my GI tract basically shutting down without notice. Ditto for the raging anxiety that somehow became part of my life without my invitation or permission. 

For me, this all amounts to suffering. Please don’t get me wrong. I’m not complaining. Everybody has a cross to bear, and this is mine. It could be worse, and I’m grateful it’s not.

However, I have experienced the darkest of days. The deepest fatigue. The bleakest of thoughts. All courtesy of lyme disease, and there is no easy exit strategy. 

But the nerve situation is so blessedly simple. The doctor pointed to the exact spot on the MRI that is causing my pain. And then he told me the treatment options, which include cortisone injections, surgery and time. I’m not interested in surgery, so I’m going for a cocktail of injections and time at this point.

At times my nerve pain brings me to tears. Other times it steals my breath. But there’s no emotional burden. I’m not wondering if I’m doing enough to help myself. I’m not confused about a myriad of treatment options. I don’t feel stigmatized. It’s all so wonderfully clear. Painful, but clear.

If only lyme disease could be so clear. Then there would be a lot less suffering. 

For me, and for my fellow warriors.

[mylymedlife]

This Was a Moment.

I’m still playing catch up, so this happened back in December.

First, some background. I love Bruce Springsteen. I mean, I really love him, and have for many years. Also, my beloved late brother loved Springsteen, so when I listen to the Boss, I feel my brother, which makes anything Springsteen-related doubly meaningful for me.

Last November, Bruce started a limited engagement on Broadway. It’s a one man show (save two songs with his wife) that cannot be categorized. It’s not a play. It’s not a musical. It’s not a concert per se. It’s an intimate evening with Bruce. Just him, his guitar, his harmonica and his piano in a 900 person seat theater. It’s a mixture of autobiography and song. I read all about the show and desperately wanted to attend, but it was sold out by the time I looked into it.

Now, flash back to a November evening at our home. My husband, daughter and I were casually chatting at the table after dinner. Somehow, the discussion turned to Broadway, which made me think of Bruce, and here is a near verbatim recounting.

Me: I would DIE (major emphasis on that word) to go to that Springsteen show, but it’s sold out.

Long pause.

My husband: No, it’s not.

Me: Yes it is. I checked.

My husband: No, it’s not.

Me: Yes it is. I know for sure.

My husband: Well....... there’s one ticket....... and it’s yours.

Me: (stunned, heart stopping) What?

My husband: You have a ticket.

Me: (still stunned) No. Wait. No. Seriously. No way. No way. NO WAY.

My husband: It’s all set up. I’ve booked your hotel. You’re having dinner with the Dwecks (good friends in NYC) the night before, and then you have the concert the next day. Cecilia already talked to the restaurant to make sure they can accommodate you. Everything is taken care of.

We went through a few more rounds of this before I truly believed it. This is the most thoughtful, wonderful, extravagant surprise of my life. And so well timed.

Before I got sick I had a big, interesting life that involved frequent travel and embracing of new experiences. Then I got sick, and my life slowly shrank into a pinhole. Now, I am on the long road to recovery, and am working to expand my world again.

The complication is I’m not the same person I was before Lyme manhandled my body and mind. Struggle forces you to grow, so I have evolved in many ways that I like and enjoy. But certain things that used to be easy are now hard. Or at the very least, less easy.

I used to travel to New York frequently for work and pleasure. I love the city, know it well, and it’s never been a problem for me to navigate it. But this would be my fist time traveling to the city on my own in my new reality.

Let’s go back to the night my husband told me about the trip. I was incredibly excited. Excited to see Bruce, but also excited for the above. I felt ready for this new challenge, and saw it as an opportunity to re-connect to a part of myself I’ve been missing. I told myself I was going to get on that plane, go to that city, and reclaim a piece of myself.

And that’s exactly what I did.

The trip could not have gone better. I felt capable, competent, strong, brave and independent. All adjectives that have been missing from my life for quite some time. I navigated the city with ease, met my friends downtown for dinner, and I never felt afraid. Was I anxious at times? You bet. But no more so than when I’m sitting at home. So, nothing to worry about there. (Remember, I get anxious every day. It’s just less loud now, and therefore less limiting).

And the concert. I don’t have the words to describe it, so I won’t even try. It was a spiritual experience for me (and for just about everybody there, as far as I could tell). Gripping, emotional, beautiful. The story of a man who spent his life using word and song to wrestle and overcome demons. At times you could hear a pin drop. At times, the roof felt like it would come off. The whole experience was just stunning.

And the best part of all? I took my brother to that concert with me in the form of a button with his photo on it. AND, I found a way to hide that button in the theater. It brings me so much joy to think about my brother being serenaded by Bruce, night after night. You have no idea.

I’m so grateful to my husband for doing this for me. Even though he is my rock and number one supporter, I know he feels helpless sometimes and wishes he could do more. When he planned this trip, he knew it would be about more than the concert. He knew he was handing me the keys to a piece of my former life, and he knew how much I needed and wanted that.

I love him beyond words, and I’m so blessed for the abundant ways he has made this hellacious journey just a little less so by his deeply thoughtful words and actions.

[mylymedlife]

If You Are Diagnosed with Chronic Lyme Disease, You Are on Your Own. Part II.

Just came across this on Facebook. It’s written by an RN, and pretty much sums up what I was trying to say in my previous post:

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It's so important that the Lyme community unite & stand up for Lyme patients globally! So many of us have lost so much to this horrific disease & tick borne infections.

1. Some have infected our children in utero, & they will grow to suffer horribly just like us! 2. We have permanent damage to our immune systems, and with no cure in sight! 3. We have lost EVERYTHING we have worked so hard for...careers, savings, family & friends, quality of life, and at times our sanity.

We have been forgotten & ignored by the medical system, the CDC, & our government. Its time we come together like AIDS patients did & fight for the help we desperately deserve! We are all sick & because of greed and lies we are all left with NOTHING! NO CURE, NO TREATMENTS, NO RESEARCH, NO DISABiLITY, NO QUALITY OF LIFE.

We can not sit quietly and expect others to fight this fight for us! Please share this post & invite family, friends, & Lyme warriors to stand with us May 4th, 2018 at the CDC in Atlanta, Ga. Its time our voices are heard!!!💚👊💚👊💚👊

https://www.facebook.com/lymearmy/

[mylymedlife]

If You Are Diagnosed with Chronic Lyme Disease, You Are on Your Own.

That little bottle of pills cost $150. Insurance doesn’t cover it. It’s one of many, many bottles I have that are not covered by insurance. Then there are the $500 per hour doctor visits that are not covered by insurance. And the lab tests that insurance doesn’t cover.

Why, you ask?

I’d have to write a dissertation-length post to answer that question. The short answer is insurance does not cover chronic lyme disease because there is much disagreement and debate about how to categorize patients who do not recover from an acute lyme infection after an initial round of antibiotics. The standard treatment for an acute lyme infection is 14-21 days of doxycycline. Insurance covers that.

But if you still have lyme related symptoms after initial treatment, you are on your own -- on many different levels. You are on your own financially. But you are also on your own in determining your treatment plan, as there are no standard protocols for chronic lyme disease. 

If you are diagnosed with a better understood, less controversial disease, you will be ushered into a pre-existing system custom designed to fight whatever ails you. And insurance will pay for it.

If the diagnosis is chronic lyme disease, welcome to the wild west. Without a tour guide. One lyme sufferer described it this way: “It’s like you are being killed from the inside out, and you have to solve your own murder mystery.” Along those lines, I have often referred to my battle with lyme as a scavenger hunt with no clues.

If you have chronic lyme disease, your only hope is to be treated by a lyme-literate doctor. Lyme is incredibly complex, very widespread (it’s an epidemic), and there are not enough lyme-literate doctors to go around. 

In that light, here is what it looks and feels like to battle chronic lyme disease:

Even though you haven’t been to medical school, you are basically forced into being your own doctor. You bear the burden of researching various treatment options, and you have to make your best educated guess about what will be effective for you. You literally take your life in your own hands. 

You must do the above while feeling miserable on a daily basis. I am beyond grateful to my husband, who is the Research Director of my operation. For many years, I was so exhausted on just trying to survive lyme disease that I didn’t have any energy or interest in reading about it. Living it was bad enough. My husband has been instrumental in guiding my treatment, and I would not have made any progress without him.

Once you manage to find a doctor you think can help, you are faced with a long wait time for an appointment. Usually three to four months. Currently, I am about a year into a THREE YEAR waitlist for a doctor in Colorado (I live in Minnesota).

Speaking of Colorado, you are often forced to travel to another state to seek treatment. See point number one about lyme literate doctors being few and far between.

Sometimes you can get certain tests covered by insurance if they are standard tests that are not considered lyme specific, but it’s usually a hassle, and requires several calls to the insurance company. If you are being treated by an out of state doctor, as I am presently, it can be a challenge to get your tests covered in your home state. Case in point: this morning I had to drive an hour round trip for a blood draw, as there was only one facility that insurance would cover. And I had to make multiple calls to the insurance company to find the out-of-the-way lab.

You live with the emotional stress and burden of wondering if you are doing the right things. I often say if you line up ten people who have recovered from chronic lyme, you will hear ten different stories of how they did it, as each lyme patient has to solve their unique riddle.

Because there is not general consensus on treatment options, each lyme literate doctor has their own approach. As a result, you end up switching doctors a lot. You start with one doctor, and their approach may or may not help you. If iit doesn’t, then you move on to the next doctor and try their approach. Sometimes one doctor’s approach works for a while, and then you hit a plateau. So, then you switch. You get the drill. All that switching is stressful and usually expensive. Stressful, because you are moving on from somebody you’ve learned to trust, and you need to build trust in the new person. Expensive because each doctor wants to collect their own data. As such, a doctor switch usually results in a new battery of tests. And by now you know those tests are not covered by insurance.

You can get overwhelmed with medical bills. I make a conscious effort not to know how much my care has cost. If I knew, I would get even  more sick. If I had to guess, I’d say it’s close to six figures. Yes, you read that right. People sell their houses to treat their lyme infections. Seriously.

I could go on, but you are probably exhausted by now.

I’m sharing this information because my experience is most people know somebody with chronic lyme. But my guess is unless you are very close to that person, you don’t have any idea what they are truly facing. Why would you? I think most people assume people with chronic lyme are treated the same as people with other illnesses. If only that were the case.

I don’t think it will always be this way. There are numerous lobbying efforts going on, and eventually things will change. This is truly an epidemic, and one day it will get the funding and attention it deserves.

Until then, I pray every day for my fellow lyme warriors who are facing this hellacious battle without the proper resources. To stand a chance of recovery, you need financial resources, intellectual resources, and a strong support system. I’m grateful and blessed to have all of the above, but I never forget about those who are not so lucky. This has been hell on earth, and I literally cannot imagine what it’s like for those who are facing far worse with far fewer resources.

My heart goes out.

[mylymedlife]

This is me in a crowd. Notice I am calm and not freaking out.

That’s new.

Don’t be fooled by the champagne. It’s just a prop. I wish I drank, but alcohol and lyme don’t get along.

At any rate, I’m a little behind on my blog. I didn’t have time over the holidays, and then I started the new year with Influenza, so I am just getting back in the saddle.

We have a little catching up to do, so let’s go back to mid-December.

We were invited to a holiday party. There were going to be over 200 people there, I wouldn’t know most of them, and I wouldn’t know when I was going to eat, what I was going to eat or how it was going to be prepared.

Miracle one: I went.

Miracle two: I had a great time.

This type of event was standard fare for me prior to the lyme/raging anxiety chapter of my life. But post-illness, evenings like this became impossible. Too many stars had to align in order for me to participate. Namely:

I would need to have enough physical energy, which was never a given (still isn’t, frankly).

My emotional demons would have to be in check, which they rarely were. Simply being around other people became threatening, jarring and intolerable to me. You could never understand unless it happened to you.

My stomach would have to be feeling well enough to eat food I didn’t prepare. A shaky GI tract needs to be handled with extreme care, which makes eating out quite anxiety-producing, particularly if you don’t have a lot of control over the situation.

I can’t tell you how many times I said no to going out. The physical and emotional price I paid to get out the door just wasn’t worth it.

But that was then.

Now, I am healing, and more things are becoming possible for me (see previous post for detail). When we received the invitation to the party, I said yes without hesitation, surprising both myself and my husband (who is a saint). I wasn’t anxious when I said yes, however, I was sort of waiting for it to creep up on me.

But it never did. I was slightly nervous, but never anxious. Instead of focusing on what could go wrong, I decided to focus on everything that would be fun -- being with my husband, dressing up, dancing, taking part in the holiday spirit.

For the dinner portion of the evening, we were seated with 10 people, of whom, I knew three -- my husband, and the couple that invited us. Normally, this would be a nightmare scenario for me. It would be hard enough just to be in the room with that many people, but to have to make conversation with strangers on top of that was asking way too much.

But I did it. I socialized, and talked and ate. Just like a normal person. 

So often when I’m in a situation like this, I’m completely in my head trying to calm the chaos happening in there. But this night, I was not in my head. I was in the room. What a glorious feeling that was. I was fully present to the sounds, smells, laughter and joy. You see, when anxiety is screaming, it’s the loudest voice in the room, and nothing else stands a chance. But my anxiety was quiet, making room for a whole lot of other joyful noises.

The feeling was indescribable. I felt like myself again. I felt free. I was out and socializing without a care in the world. Just like I used to back in the day. Back when my digestion and my brain and my body worked the way God intended. 

Of the many things lyme has stolen from me, my ability to be carefree tops the list. I miss it like you can’t believe. At some point over the last eight years, my mind went into a mode of hyper-vigilance, marked by a radar that is always scanning the horizon for trouble. That damn radar exhausts and frustrates me. Especially since most of the “danger” it registers is not real. But anxiety doesn’t care about that. There’s nothing logical or rational about anxiety. Trying to appeal to anxiety with reason is about as effective as speaking French to somebody who only speaks Chinese.

That was a hard lesson to learn. It seems so obvious to tell yourself the 14 reasons you don’t need to be afraid to be in a room with friendly people who have no intentions of harming you in any way. But the obvious answer never gave me the intended results.

Over time I have learned to avoid what I call “taking the bait”. Anxiety is trying to goad me into a conversation that will go nowhere good. So, I simply stopped engaging. Or, more accurately -- I try not to engage. It’s very easy to get lured into taking the bait, and I often still do out of habit. But I have learned to recognize when I’m going down that road, and that’s where the aforementioned re-direction comes in. It takes a lot of practice, though, and sometimes I have to re-direct over and over and over. 

Said another way, this is a process, and I’m still very much in the thick of it. There is no overnight cure, and I have to work hard every day. It takes an incredible amount of mental energy to keep my brain from going to unhelpful places. But it’s what I must do if I want to get back “out there.” Out in the world where the fully functioning people are. Out in the places I used to travel with ease.  Staying at home and isolating is still the easiest choice for me. But I’m trying to make conscious efforts to engage in the harder choices. It’s not easy to do the hard thing (duh), but I’m going to keep trying.

In the scenario of the tortoise and the hare, I am the tortoise. I don’t remember the story exactly, but I’m pretty sure the tortoise ended up getting there. Slowly. I’m pretty sure I will do the same. But in due time.

[mylymedlife]

My Message To Anybody Suffering Physical or Mental Anguish: Never, Ever, Ever, Give Up. Never. Ever.

There is a story behind this photo. I am at my daughter’s rock climbing competition in another state. The previous week was absolutely hellacious. I was so sick from my lyme treatment I could barely function. But I wanted to make it to this climbing competition more than anything. Somehow, some way, I managed to rally just in time, and I was so grateful to be able to support my daughter, and be with my family. In the moment of the photo, I truly felt like a survivor. I wasn’t back to 100%, but I felt well enough to function, and I was there. I asked my husband to take this picture because I wanted to mark the moment in time. I wanted a tangible reminder that no matter how many times I get knocked down, I always find a way to get back up. As I look at that photo, I still can’t believe I’m sitting there, knowing what I had been through the week prior. 

But that hellacious week was about physical suffering, and as bad as it was, the emotional suffering I have endured is far worse.  I have suffered in ways I’d never be able to describe. I have endured the darkest of days. I’ve never considered suicide in any way, but so many times the thought I just can’t do this anymore tore through my mind and body. It hurt to be alive.

I was deep in the merciless, horrendous, soul sucking grip of severe anxiety. I’ve been a worrier since childhood, but the anxiety I have experienced in the last three years is like nothing I have ever known. I think it was the result of a perfect storm of the way I’m wired, things that happened in childhood, things that happened as an adult, and 8 years of lyme-induced physical distress.

Now I want you to notice something. I am talking about my debilitating anxiety in the past tense. That is not to say I am cured. Far from it. I still get anxious every day. But the anxiety is coming in at a lower volume. It’s speaking to me instead of shouting. It’s still unpleasant, but less so. And less debilitating.

To my fellow anxiety sufferers, especially those who have lost hope, please listen to this. Just. Keep. Trying. No matter how dark your days, no matter how hopeless you feel, no matter how small and afraid and alone you feel, keep trying. If what you are doing isn’t working, try something else. If that doesn’t work, try yet another thing. Just never stop trying.

For three years I tried EVERYTHING, and NOTHING worked. I lost hope over and over again. I began to describe my anxiety as intractable. I was never suicidal, but I wasn’t taking much joy in being alive. It hurt too much. I was so scared. The world felt so big and I felt so small. 

But I kept on going. And somehow, some way, after three years of hard work, things finally began to turn for me. There was no big ah ha moment. Rather, it was a series of minor positive shifts that eventually started to add up to bigger shifts. It’s like building a rock pile and starting with a single, tiny pebble. Each pebble represents a victory over fear and anxiety. And one pebble at a time, one day at a time, my rock pile of victories began to grow. 

Everybody’s anxiety story is unique, and therefore, what helped me might not be helpful to somebody else. But in the event there is any chance my experience can lessen the suffering of even one person, here are a few of things that have been most helpful to me:

Switching therapists. My previous therapist was extremely helpful, but she retired. I was devastated when she told me, but I tried to tell myself it was happening for a reason, and that somebody else was meant to drop into my life to help me on the next leg of my journey.

Thank goodness I was right about that, but it took some patience. After about about three months, of “dating” other therapists, I was eventually led to Dr. Z (he’s Serbian, his name is difficult to pronounce, everyone calls him Dr. Z). I am profoundly grateful to have found Dr. Z, as he has changed my life immeasurably. He’s brilliant, and helps me more than I could ever describe. 

Here is the first life changing nugget he gave me. After I detailed everything I was doing to try to control my anxiety, he told me I was looking at it the wrong way. He said if I’m trying to get rid of my anxiety, I’m being a destroyer. Instead, he encouraged me to be a builder. A builder of my life. A builder of my happiness. He told me to focus on doing things I enjoy simply because I enjoy them. Not because I think it will make me less anxious. I spent the last three years doing things because I hoped they would make me less anxious. But they didn’t. When I do things because they bring me joy, I end up being less anxious as a consequence. So, when I find myself getting anxious, I work on being a builder instead of being a destroyer. That’s part of what this blog is about. I’m trying to help others while also helping myself.

I realized I don’t need to get my anxiety under control. I need to live my life. Sometimes that might include anxiety and sometimes it might not. In that light, I work on controlling my response to anxiety when and if it arises, but I no longer spend every waking moment thinking I need to get my anxiety under control. Because I don’t. What a relief.

I exercise most days. Dawn is my time. The silence of that hour when the world is still largely asleep is sacred to me. It speaks to me and heals me more than any anxiety medication. I walk every day and do weights and stretching every other day.

I meditate. Nothing better than silence for a brain that’s often very loud.  

I practice mindfulness. When I notice my brain moving into unhelpful thought patterns (i.e. irrational fears), I calmly re-direct it to something more useful. Sometimes I need to send a particularly nagging thought pattern away many, many times before it finally retreats. The goal is to notice the thought pattern without taking the bait. Sometimes I still get tricked and take the bait, but I try to pull up as soon as I notice what’s happening.

I take a pinch of anxiety medication every afternoon. I tend to shy away from pharmaceuticals because I am extremely sensitive to medication. I tend to try natural remedies first. But when I got to the point where I could no longer leave the house, I knew it was time to get out of my comfort zone, pharmacologically speaking. I used to take meds twice a day, and now I’m down to just one small dose. One day I won’t need that, but I do now, and I’m OK with it.

I began to accept fear as part of my equation. Certain situations that are entirely non-threatening to the general population, are fully threatening to me. I love church. I stopped being able to go because it was too threatening to sit among so many people. Logically, I knew I was safe and that nobody would hurt me, but anxiety knows no logic. At a certain point, I realized I needed to make peace with fear. This doesn’t mean I have conquered my fears or that I’m no longer afraid. It just means I  accept that fear is going to be along for the ride sometimes. My challenge is to acknowledge the fear without being overly reactive to it.  But here’s where resilience comes in. Often, I’m just as afraid of something the third, fourth or fifth time I do it, so each time is sort of like starting over. But more often than not, when I confront a situation I’m afraid of, everything turns out, and I end up building positive associations. I believe that if I continue to build positive associations around things that are difficult for me, eventually they will become less difficult. 

I pray. A lot. Many times per day. Prayer brings me the most incredible sense of comfort and serenity. Stopping to pray throughout the day helps me slow down, check in with myself, and recognize and re-set any emotions or thought patterns that may be headed off the rails. Praying also gives me the opportunity to feel God’s indescribable love and healing power.

I could go on, but that’s probably enough for now. And I’d like to end where I began, which is to encourage anybody who is suffering to keep hanging on. Keep believing. Keep trying. My days were so very dark, but I am finding the light now. It took a long, long time and tremendous effort, but it was worth it. I still have a long way to go, but as long as I continue to move away from darkness and towards light, I will have the fortitude to keep going.

And I wish the same for you.

[mylymedlife]

Here We Go Again.

I am woking through the process with my new doctor. It goes like this:

Initial consult. 

Blood work.

Follow up and recommendations (via Skype, as he is in LA and I am in Minnesota).

All of the above have now been completed, and I am off to the races with a new treatment plan. I am not going to get too far into specifics, as I don’t want anybody taking advice from me without consulting their doctor. 

But here’s a general overview. First, we discussed my spectacularly bad reaction to my first dose of LDI (Low Dose Immunotherapy). If you missed that post, you can read about it here.

At any rate, my doctor said my strong reaction is an indication I am still carrying a heavy load of lyme bacteria. Not what I wanted to hear, but I’m not surprised, and I accept it. If you’ve been reading along, you’ll recall I tested negative for lyme over the summer. I never did back flips over that because I didn’t really believe it, as the lyme bacteria is notorious for its ability to evade detection from lab tests. Also, a negative test could also just mean the bacteria was dormant at the time.

So, it turns out I had a false negative. Again, it’s OK. I’m not freaking out. I’m in good hands. Based on my symptoms, my doctor also believes I have a lyme co-infection called Bartonella. I actually see this as good news, as it’s a potential problem that has not been addressed, which provides another opportunity for healing. The treatment for Bartonella is in one of those dropper bottles. It’s a Byron White formula called A-Bart. Again, please do not try this at home without consulting your doctor.

My next steps with LDI are less clear. My horrific reaction came from the smallest dose currently available, so my doctor is doing research to determine what, if anything can be done for me moving forward. I am hopeful he will figure something out, as this treatment has helped many lyme patients. Stay tuned on that one.

The rest of the medication and supplements my doctor prescribed are to help with my other issues, which include low physical stamina, severe GI issues, osteoporosis, anxiety and hypothyroidism. Funny, but I never think of myself has having so many things wrong. Probably a good thing, or I’d never get out of bed!

At any rate, I feel hopeful. As look at the photo above, most of those bottles contain things I haven’t tried before. I’m long past the point where I think I will have an overnight miracle cure. I’ve come to understand and accept that my progress will be slow and incremental. My hope is to continue to address the root causes of my issues while simultaneously improving my quality of life by treating my symptoms. 

And I think that’s the biggest difference between my old doctor and my new one. My new doctor is much more focused on improving my quality of life in the short term while trying to restore my health for the long run. Sounds like a solid game plan to me.

I’ve had so many new beginnings that I’ve lost track of which one I’m on. But every new beginning brings new optimism, and that’s my mood today.

[mylymedlife]

This Was My View on the Treadmill This Morning.

Boring, huh?

We are out of town for my daughter’s rock climbing competition, and let’s just say the hotel treadmill didn’t exactly have a five star view.

But the good thing about a boring view is it gives you time to think. My first thoughts were of how bored I was. How I wished I was walking outside (too cold and dark). But then I reminded myself why I was on the treadmill in the first place -- it’s good for my anxiety, it’s good for my osteoporosis, and it’s good for my overall well being. In that light, the best thing seemed to be to just keep going. Keep putting one foot in front of the other, whether it’s pleasant or not. Whether it’s easy or hard.

Then I realized that’s a metaphor for my long tangle with chronic lyme disease. All these years I’ve continued to put one foot in front of the other -- no matter what. Whether I feel hopeful of hopeless. Whether I feel I’m making progress or going backwards. Whether I feel good or wretched. No matter what, I just keep on trying. I don’t think this is noble or brave or heroic. I just think it’s the only choice I have. 

When I finished the treadmill this morning I lifted weights and stretched, as I do every other day. But today I did something different when I finished. I took a moment to reflect on how proud I was of myself. Proud that I stayed on the treadmill this day, but also proud for how I’ve stayed on life’s treadmill for the last eight years. And then I shed a few tears. Tears of pride and gratitude.

Sometimes I think I’m overly focused on moving forward, and I don’t pause to reflect on how far I’ve come. And really, isn’t celebrating how far I’ve come more productive than thinking about how far I still have to go?

[mylymedlife]

I Went Out Last Saturday. And I Enjoyed Myself.

Well, each sentence above is its own little miracle. First, I went out. That has become a rarity in my life. Between my extreme anxiety, fatigue issues, and the general mess of chronic lyme, my social life has all but evaporated. It has gotten to the point that I pretty much only leave the house to run errands, go to the doctor, attend family vacations, or for anything my daughter needs. You’ll notice routine socializing is not on that list.

At a certain point, leaving the house for pleasure became unpleasurable. 

Meeting friends for dinner seems so simple doesn’t it? Nothing to it, right? You simply leave the house, meet up with your friends, share drinks and dinner and laughter, then head home. No skin off your back. Non-threatening. Fun, even.

That’s what going out used to be for me. But I don’t remember how that feels anymore. Just thinking about such a care free social experience brings tears to my eyes. I long for the time when it was that simple.

But anxiety and major GI issues and fatigue and chronic lyme make life un-simple. And un-carefree. 

And when life is un-simple and un-carefree, you just want to stay home. Oh, I fought it for years. I fought it hard. When going out felt like the last thing I wanted to do, I somehow marshaled the strength to push through my physical and emotional barriers. I got myself to that dinner table. And I put on a smile. I probably even laughed. Many of you have dined with me while I was in this condition. I may have seemed fine on the outside, but I promise you I was dying on the inside. I was in agony. 

At a certain point, I just didn’t see the ROI in going out. The price I paid in physical and mental suffering became too great. I died a thousand deaths every time I socialized. And then one day I just said “no more”.

That of course, is the anxiety winning. But I didn’t care. I needed a break. I needed to retreat. To heal, reflect, get help. I needed to stay in to figure out how to get out again.

It has been a spectacularly slow process that I could never explain, but change is finally happening for me. I can’t tell you exactly what did it, but a combination of time, faith, the right therapist, the right lyme doctor, and the right support from my family and friends are finally adding up to something.

I am nowhere near normal (whatever that is), but I have this sensation of slipping back into my old skin. Skin where I was more vibrant, less afraid, less tired, less anxious......and more alive. Ever so slowly, I am getting closer to somebody I recognize. Somebody who was happier, less burdened, more free. The person I was before lyme and anxiety hijacked my very happy and full life.

Last Saturday is proof of that. For the first time I can remember, I was actually happy to be going out. I enjoyed getting dressed up. I looked toward the evening with anticipation vs. dread. For so long, it was like a hostage negotiation to get me out to dinner. On Saturday, I went willingly. Make no mistake, I was still afraid. But less so. The voices that said this could be fun were louder than the ones that said I could die from this. 

And I enjoyed myself. I enjoyed being out in public. I enjoyed the holiday decorations. I enjoyed flirting with my husband. I enjoyed getting in touch with a little piece of my former self, and our former life. 

I used to automatically say no to any social request. And it was a firm no. Now, when social opportunities arise, my conditioned response is still no, as it’s become a habit. But I’ve started to override my automatic no with a yes, or a maybe, which still counts a progress in my book. Maybe isn’t yes, but it’s not a firm no. 

I just looked at the above photo again. As I look in my eyes, I see a person who is trying very hard to walk away from a bad car accident. She’s been through a trial. She’s shaken. She may never fully recover. But ever so slowly she can regain little pieces of the life she once knew. Of the person she once was.

And I also notice one more thing: she’s smiling.

[mylymedlife]

I Got Unlucky Door Number Three.

I’ve been too sick to tell you how sick I’ve been. The above photo is how I spent most of the past week. It was not pleasant.

At my consult with my new doctor at Holtorf Medical Group he recommended a new treatment. He sent me home with the medicine, and told me one of three things would happen when I took it: 1) I would feel good, 2) I wouldn’t notice anything, 3) I would think he tried to kill me. 

You guessed it. I got number three.

When he mentioned the possibility of feeling like he tried to kill me, I didn’t take it too seriously or ask too many questions. I was unfazed by the idea of something making me feel sick because I’ve had so many bad reactions to medications and treatment over the years.  Been there, done that, I always get through it.

Well, this was different. My doctor was not exaggerating when he said I would think he tried to kill me. Within three hours of taking the medication, I was extremely nauseated, my eyes felt heavy as lead, and I felt awful. I literally could not function. The room was spinning, I couldn’t focus, and any motion whatsoever exacerbated the nausea. Looking at my phone or computer was out of the question. Any motion on either device made me feel as though I was about to vomit. 

I spent the day rotating between a comfy chair and the sofa. Even though I felt horrendously bad, I wasn’t too concerned, as I figured it would pass by morning. Oh, how wrong I was. The symptoms lasted for a week. Seven full days. Count ‘em. Seven days of doing nothing but trying to get through the day. Somewhere around Wednesday when I felt no better than when it all started on Saturday, despair began to set in. I was wondering if this was my new permanent condition.

Mercifully, I was wrong about that, and I eventually began to feel better. But it was rough. Holy cow. As I said, I’m used to feeling badly, but this was a whole different level.

The treatment in question is called Low Dose Immunotherapy, which has proven to be helpful in treating chronic lyme disease. It works off the same theory used in treating allergies. The premise is the immune system is overreacting to the allergen, or in the case of lyme disease, the lyme bacteria. 

The way LDI works is an extremely diluted dose of dead lyme bacteria is introduced to the patient, with the hopes of desensitizing the immune system to said bacteria. Said another way -- the theory is that my immune system basically goes ballistic when it encounters the lyme bacteria. LDI is supposed to help my immune system and the lyme bacteria get along better. No more shouting.

My husband has done a great deal of research on LDI, which is one of the main reasons we decided to give Holtorf Medical a try, as they have been successfully using LDI for several years. You may read more about LDI here.

So, what does my severe reaction to my initial dose of LDI mean? We are not sure. My follow up with my doctor is next week, and he will explain everything. Based on my husband’s research, we believe my reaction is an indicator my immune system is definitely overreacting to the lyme bacteria. If that’s really the case, that gives us hope LDI may be helpful for me. But, we are not doctors, and we are guessing. 

Stay tuned.

[mylymedlife]

Well, That Was Quite A Trip.

Per my previous post, I traveled to LA to test drive a new clinic. The trip was eventful for me on many levels.

For starters, it’s a big deal for me to get on an airplane by myself. In my pre-lyme life, getting on a plane by myself was not a big deal at all. In fact, it was routine, as I traveled frequently for work.

But that was then. Before the lyme. Before the fatigue. Before the low stress tolerance. Before the raging anxiety.

And this is Now.

Life Before was relatively easy. Life Now is quite difficult. Things that used to be routine have become anything but.

I wanted to take this trip by myself, just to see if I could do it. However, when the Uber arrived and it was time to leave for the airport, I immediately regretted my decision. What was I thinking?

Suddenly, the world felt very big, and I felt very small. My chest tightened then, and even now as I reflect on it.

But I pressed on. What choice did I have, really?

I had quite a bit of anxiety at the airport and on the plane. What was I afraid of, you ask? Absolutely nothing at all. That’s the thing of anxiety. When it’s bad, you walk through life with a general feeling of impending doom. Everything can be perfectly fine, yet your radar is constantly scanning the horizon for signs of danger. It’s a miserable way to live. Exhausting. 

At any rate, I survived, the plane trip, the hour wait in the rental car line, and the navigation through LA traffic to get to the clinic. As I sat in the waiting room, I again regretted my decision to come alone. I just wasn’t feeling very brave in that moment. But again, the only option was to press on.

My visit with my doctor was uneventful in a good way. I didn’t get any sense he was surprised by anything I told him. He was clearly experienced in dealing with patients with complex cases, such as mine, and he had some new ideas for me. 

If I were new to this rodeo, I’d be doing an Irish Jig thinking this new doctor was going to change my life in no time. However, time and experience have taught me there is no sliver bullet for my situation. Instead of looking for an overnight cure, I need to focus on incremental improvement. Slow and steady progress. And that’s what I think I will achieve by working with Holtorf Medical Group. In short, I am feeling optimistic, but also realistic. 

So, that was the visit to the clinic.

Unbeknownst to me, the real growth and healing would happen the next day. That’s when I spent the day by myself in Santa Monica. I took a long walk along the beach, and then strolled the shops on the famous 3rd Street Promenade. The weather was a sparkling 65 degrees, and I had nothing but time. Sounds ideal, right? Maybe for someone else, but I had low level anxiety the whole time. However, that’s where the growth happened. While I was walking and strolling, two very distinct revelations came to me:

Maybe I could have a different reaction to anxiety. When I get anxious, I see it as failure, or somehow my fault. But on this day, I wondered if I could see the anxiety I was feeling as a good thing. I know that sounds crazy. But know this -- I was anxious because I was doing something that made me afraid. I broke out of my comfort zone, and got out in the world. So maybe, just maybe, I could welcome my anxiety as a side effect of making my world bigger.

I need to stop comparing Now to Before. I am not the same person I was before I got sick. I don’t have the same mental and physical reserve. Yet, I keep expecting myself to be able to perform at the same level as Before. But, the fact of the matter is something happened to me. Something big. I am different now. So, what if I tried to experience things through the eyes of the person I am Now instead of the person I was Before? It’s almost like starting life over again and letting each experience be new, without adding the burden of expectation based on past experience. It’s accepting what’s possible for me Now vs. what was possible for me Before. I don’t know if that makes any sense to you, but it does to me. It feels like I’m taking pressure off myself, and accepting what is vs. holding myself to some unrealistic standard based on what used to be.

I took the last photo above before I headed out for my day in Santa Monica. For some reason I just wanted to capture that moment. I looked in the mirror and saw a scared, yet brave woman who was standing on her own two feet. I felt a little bigger and a little more brave than before I left home.

Speaking of home, as I prepared for my trip, I was only thinking about my appointment, and whether or not I would have a good feeling about the clinic.

As I reflect on my trip, I can see the appointment was the least of what I accomplished. I grew on that trip. I gained wisdom and confidence. Am I suddenly ten times less anxious and ten times more brave? Absolutely not. But I am incrementally moving in a more positive direction.

That’s all I can ask for.