Nevertheless, there was a health journey.

 

    This blog began as a way to document the ways I continued to have adventures in spite of my chronic health issues. For quite a few years after my primary diagnosis I really was wrapped up in the identity it gave me. I needed a shorthand to explain why my career dreams had totally eclipsed over a number of years, why I am not always available, and how I might be different from those around me.

    However being quite determined to continue living as big as I can has really allowed me to shift that perspective. My health is effecting me every single day,  but I am not my illness.

    My body has always been the broken one. I remember being 5 or 6 and having the absolute worst pains in my legs. I would lay crying for hours. I remember seeing the Dr, who said they were growing pains, and had me take calcium daily. That didn't help.

    I had a younger (half) brother who was the opposite of me. He was never sick. He would take a tumble and get right back up. He would totally ignore pain, and just keep going. As an adult he was in an accident on a scooter and broke his leg. They put in a metal rod, and sent him home to recover. He was walking, and working construction, within 4 days. He always said he wished he could give some of his strength to me.  (In the end he needed some of my strength. I will tell his story some day.)

    When I was 12 I first experienced a migraine headache. It came out of the blue, and was so intense I was hospitalized for a week while they tried to find the cause of my agony. I was vomiting constantly, and miserable. That initial headache stayed almost constant for 2 years. I saw so many doctors, struggled to complete schoolwork, took so many medications. My healthcare team at year 2 wanted to send me out to get a better diagnosis. There was talk of the Mayo clinic or a migraine exclusive clinic somewhere I don't remember. I would be pulled out of school and tutored at the hospital. I said no. I was in 8th grade at the time, and desperate to be normal. 

    So began my adolescence, trying to be normal but dashing from migraine to migraine. I studied biofeedback to help manage my pain, and kept trucking between demerol shots when the pain was at its worst. Sleeping for a good deep chunk of time was the only thing to turn down that dial. (I will report that with each pregnancy my headaches got SO MUCH BETTER! After my youngest was born I had to have a hysterectomy and then oopherectomy, and those hormone changes have almost completely alleviated migraines for me.)

    I had terribly painful menstrual pain. I remember being unable to stand up in class when the bell rang because of the pain. I remember being curled up and vomiting because of the waves of cramps. As an adult I learded that this pain was caused by endometriosis. However as a teen, I was just told to push through that agony, the pain was a normal part of being a woman, and largely dismissed. 

    I had my appendix out at 16. My galbladder out at 21. (Every time you are put under general anesthesia takes a toll on your body.)

    Around that time (age 21) I started to have teeth abcess for seemingly no reason. Healthy teeth with an abcessed root would swell up my face overnight. Through this era of repeated emergency root canals we learned that most of my upper teeth had something called a pulp stone. That is a calcium deposit in the pulp of your tooth. The tooth is unable to be fully numbed until that stone is pried out. So I endured repeated root canals without adequate numbing. I cannot really convey how traumatic that was. As an adult I can barely manage an exam shaking and crying, and have to have sedation for any dental work. I was fully awake, feeling every prod with the tool into my tooth. It was torture, literally. We didn't realize that the problem was probably really my sinuses, and there began a constant struggle between sinsus infections and abcessed teeth.

    After becoming a mother they finally began looking into my menstral pain. I had multiple laparoscopies to remove adhesions and endometrial tissue.

    My last pregnancy lead to a post partum uterine infection, re-hospitalization for treatment, 2 D&C's, the second of which perforated my fragile infected uterus. That perferation continued to cause terrible pain for 4 months, leading to a hysterectomy. (more anesthesia)

    Goodness, reading that all is overwhelming. Yet that is really where things got more difficult.

    I began struggling with chronic sinus infections. I had a single infection last over a year, with an endless stream of antibiotics and steroids trying to knock down the infection that never ended. We finally got health insurance, and I was able to see a specialist who immediately validated how sick I was, and scheduled surgery for asap.

    I hoped to be better. I was training as a midwife, attending births. but really struggling with my sinuses still. Then I went to Louisiana as a voluteer after Hurricane Katrina. I actually was on another course of antibiotics as we drove down. I had no plan to be in the damanged area, as I was based in Baton Rouge. However I did end up driving into New Orleans a few days before the city was opened again to some residents. We used our Red Cross credentials to get in, with a very pregnant woman who I still call my soul sister, and hoped to find out the condition of her home and that of family members. I was in frail health, and exposed to an awful lot of mold spores and fungus that my body was not accustomed to, in a really stressful circumstance. So I returned home very ill.

    I stayed sick. I was constantly doing sinus rinses, trying natural things between antibiotic courses. I saw a new sinus Dr who explained that my first surgery had been done with older, less precise and more invasive techniques. I was left with a pocket where infection was just constantly brewing because it did not drain. Another surgery. 

    I kept trying to guess what was taking down my health. I was also diagnosed with PTSD from my experiences after Katrina. Nobody is really prepared for that. However I recognize that it was impossible to expect myself to gracefully process all that happened while also struggling to just live through illness.

    I finally was able to get into an alterantive health practice, where they did rapid labs and found that I had systemic candida. All of the antibiotics and steroids had caused an overgrowth of yeast. Though my sinuses had been swabbed for candida and that was negative, it had worked its way through my gut, and into my blood stream.They had never seen that level of candida in the blood outside of the ICU. I was immediately put on antifungal medication, and began an intensive 6 month candida diet under the supervision of a nutritionist. I was on 2 different Rx antifungals for a total of 12 weeks, and then we shifted to herbal antifungals and started rebuilding my gut. I worked so very hard.

    But I never really got better. I was knocked down, and eventually diagnosed with the least validating chronic condition ever: Fibromyalgia.There was still room for some alterantive diagnosis (Lyme, Lupis, MS), but I was cleared of those, and was left to make sense of where to go from there.

    What really caused the the full body oversensitivity of my nervous system and overwhelming fatigue? Was it the candida, or the surgeries, the years of illness, or was it just genetics? I will never really know, but it doesn't totally matter either. The outcome is the same.

    I stopped attending births and thought that becoming a Medical Assistant would be easier on me than late nights helping babies arrive. I managed to get through that degree, and worked only a few years full time. I was the OB coordinator at a community health center, and LOVED IT. However it became more and more challenging for me to be dependable, for my brain fog to not impact my work, and I had to reduce my hours and leave that position. I tried a non-profit with fewer hours, and then that became too much.

    It feels like since that point, my "career" has goals have just eclipsed. I was eventually determined to be fully disabled. I really enjoy working, having a purpose. I have been lucky to find a variety of small part time jobs that help me feel productive and of value. I often serve as a one on one caregiver with seniors or developmentally disabled adults. Short shifts, and just a handful of hours each week, help me manage to do more than just exist in my pain, and keep my chronic illness from negatively impacting my clients.However at times I don't work at all. Often the work of living in this body is full time.

    I really thought that my pain was going to be as intense as it was forever. My fibromyalgia is like the ocean, with tides and waves. However there was other pain we dismissed for way too long, assuming it was just my bodies erroneous messaged coursing through my body. It was not until a move forced me to find a new Dr, who wanted to start from the beginning and evaluate my pain, that I found out that I have osteoarthritis in my spine. Top to bottom. I also have some bulging disks and nerves being aggravated by bone spurs. I was so stunned, and hopeful, that an aspect of my pain was TREATABLE in new ways. 

    Now I see that Dr every other week, and have an injection, nerve block, nerve ablation, or other procedure to reduce an area of pain on my back. Yes, every 2 weeks. When one area is calmed down there is always something else acting up. I consider a game of Whack-A-Mole every 2 weeks. Will we hit the right nerve to reduce enough pain, and what new area of pain will be revealed as we untangle the chaos of inflammation and screaming nerves in my spine? Some weeks I get some great relief, and suddenly have the luxury of being able to sit in any chair in the world! (We know which coffee shops, restaraunts and venues around town that have chairs I can't sit in usually. Chairs matter people!) Others not so much. 

    I still have that darn fibromyalgia pain though.

    THAT, my friends, is the story of my body. I share this because I hope that others might be inspired by my persistence in seeking out adventures big and small, in spite of the meat suit I was issued this lifetime. If you are not living in a body that makes adventures difficult, then hopefully I have given you a better understanding of what others could be going through. 

Chronic pain sucks. It steals light, it steals hope. It steals joy. It steals dreams. I resist.

    

    

Let the adventure resume!

 I started this blog 7 years ago. So many adventures have happend since I stopped writing. It is time to write again.

I am now living in St. Louis, MO with my husband Dan. We love the city, the new region of the country, the new experiences, but are still adjusting to the sticky humidity. I don't think I will ever fully adapt to that aspect of the climate.

Reflecting on early blog entries, I can see how perfect it is that my writing so carefully documented the early magic that has lead to the sweetness of my current life. My soul was so powerfully called to the desert. I thought it was because I was going to find my tribe. The common listeners of a radio show.

I did meet those people, many who are dear to me to this day. However even that first trip had hints of the powerful circle of women that was being pulled together. My favorite day of the conference was actually a day when many of us left the conference, and sat around a table in the shade and connected, as women. It filled my soul and I wanted more. So I nurtured relationships. 

I met Rita at that first conference. Our friendship has grown with the blessing of time, and many shared experiences. It also lead to rich friendships with Lisa and then Lucinda. They are two other amazing women Rita drew in. Today I consider these three women to be the sisters I always wanted. We have all loved each other through so much of life, unconditionally and honestly.  They are each amazing women in their own ways, and I am honored to have them as my council in life. They are the ones I can ugly cry with and be empowered by, sometimes in the very same garage conversation.

Today we are all about to roll deep into individual projects that can all connect in a fascinating Venn Diagram of interests. Rita recently returned to her homeland of Armenia, and is launching into some deep exploration and sharing of the ancient and present day magic of that land. Lisa is working far too many hours as she heads towards retirement, but dazzles us with her love, positivity and crystal wisdom whenever she can. Lucinda is everywhere, but most recently returned from a week on Pine Ridge, collecting oral accounts of Bigfoot encounters. More about what I am diving into in a later blog entry.

Just know that collectively, we are working on so many fascinating things that it only made sense to share those things together. Rita was the mastermind behind The Human Factor X , a digital media company through which we can collaborate and support each other on our important and fascinating projects, and work on future shared projects we have been dreaming up. Stay tuned, it is going to be AMAZING! 

I am proud to say that I am still adventuring despite my body really preferring a recliner! I have acquied really validating additional diagnosis of significant back problems, with multiple points of osteoarthritis, bulging disks and nerve impingement. I am currently undergoing nerve block injections every other week, and I am experiencing a significant reduction in some aspects of my pain, which feels miraculous. I continue to adventure through research from my recliner when I need to, but also have a lot more confidence in getting out by myself now. I have mastered the art of car-camping, and can comfortably do multi-day solo adventures with little concern now. Most of those adventures have really been back to Colorado to see family, but I am looking forward to more adventures in the Midwest to learn more about my latest deep dive.

Stay tuned here for more on THAT! I hope to make you question your understanding of history, and ponder what messages the ancient people might want us to hear them whispering to us today.

In the Now Now, Joshua Tree.

   I have been trying to get all of my previous adventures into the blog before starting to write about the trip I am about to take, but it is just not happening!

   I have dreamed of attending a conference, called Contact In The Desert (CITD), for a few years. Around the first of the year Dan really convinced me that I just need to say I am doing it, and intend it. So I immediately started planning, dreaming, and whittling down.

   This trip, with so much time to think, has really evolved greatly. In fact it is my greatest adventure yet, not only the coming trip itself, but the process of thinking and choosing carefully what to implement to be most successful.

   The dream started as: I would create a slightly elevated platform (in the back of my Ford Escape) in order to create a flat surface, and work to make a comfortable bed that would travel with me. (This is something I have been wanting to do, in order to be able to camp again, and take inexpensive trips. More on this in another post) I would "car camp" my way, driving the roughly 1000 miles from my Colorado home to Joshua Tree. My reasoning was that this would really help me, because I could stop at any point in my drive and lay down for a while. I could pace myself well, with naps if needed. I would of course sleep at night in my snuggly nest. I could set up a cute "glamping" campsite as my home base and have a blast.

   Because I volunteered at the conference I would have a free campsite there at the beautiful California desert Joshua Tree Retreat Center, where the event is held.  (I volunteered initially because I enjoy it, and I would have a built in way to connect with others, but it comes with a free pass, 1 meal and campsite) In my whirling mind I was being entirely reasonable, sensible. I was working hard to figure out how to sleep well and be gentle with my body while fulfilling a huge dream and saving money! 

The dream could be entirely sensible if it was not entirely enmeshed with 4 days of a fantastic content filled conference and hoping to socialize a lot too.

   Around the time the conference schedule was posted, and I was then signing up for my volunteer shifts of 4 hours each day at the registration table, I started to see the immense disaster I was setting myself up for.  If I "worked" 4 hours each day, I will likely be pretty wiped out as I am the 2 mornings I work with seniors.
The chatter in my head got pretty loud! "Would I be able to actually attend any of the workshops or sit in on panel discussions or movie screenings after my shift? Well, if I get a good nap in the afternoon I might...how am I going to nap in my car, in the desert, in the afternoon? Will I even get any restorative sleep at night camping in my car? What will I do when I am curled up in pain from not sleeping well for days and having to keep going? How will I weather that flair in the back of a hot car? Then having anything left available to socialize, and be a part of some of the planned fun the group of online friends I get to meet would be the last thing possible. Why am I going?"

   Really, what is this adventure about? I remember trying to really think about my intentions. I felt really called to this conference, so why was setting myself up to not actually be able to not even have access to the experiences and people I am supposed to?  I had flipped the priorities and it was breaking me. I would pour all of myself into the least fulfilling pieces, just hoping there would be a little of me to spill over to what could really be life changing.

   So the trip that I will be on in one week looks so very different!

I am driving to California over 3 days. (So I can stop and move, or close my eyes. I can see things, be a little curious, and make those 3 days part of the journey and not just travel to "the event".

I am sleeping in real beds, in real rooms, the entire trip. A combination of generous family, motel rooms and in Joshua Tree a lovely AirBnB room will be my resting places.

I bought a pass to CITD, though I am still going to the Thursday night volunteer training, helping with a workshop on Monday (which I wanted to attend, so now it is free) and I will let them know if I feel up to helping for an hour or two here or there. Mostly I am an "honorary volunteer". I now no longer have the worry of not being able to fulfill my commitments, which is an aspect of chronic illness that frustrates me most. Now I can put all of my energy each day towards the experiences I will get the most out of.

This trip, this journey, is really feeling like a huge lesson in setting my intentions. There is an aspect of it that feels like I am also moving towards something really important, that this is going to be a journey that changes me, evolves me.

Will you come along?


 

Traveling Training Wheels

I have always wanted to see the world. I spent my senior year living in Mexico as an exchange student. I was disappointed that it was not Italy as was first planned, because getting to Europe was my dream. However learning to love the Mexican people and becoming a functional Spanish speaker has benefited me both personally and professionally my entire life. I would love to return to Mexico, and explore other Central and South American countries, and finally get to Europe. If I was healthy and money was no option, I would have a passport booklet full of stamps.

 I was such a young adult when I had my first baby. My ability to be a young wanderer was happily set aside for motherhood, which I loved. Having 3 children was an adventure all its own, but it comes with some sacrifices. Financially, travel ends up on the “someday” list, and taking 5 people somewhere is pricey. We did things like camp at Mesa Verde, attend family reunions in Kansas or visit family in West Yellowstone, getting to explore the park.

 In more recent years we have had opportunities to travel with our youngest, or just my husband and I, which served as a foundation for me to figure out how to travel successfully while managing my chronic pain and fatigue.

  2009 San Diego, CA. 3 days. Loved the climate, pain was more moderate. While Dan and Josh went to LegoLand, I rode a Hop-on Hop-off tour bus around town, and realized that bus tours are fantastic for me. Was pooped when we got home, but not in a flair.

Imagine napping with this as your view.

  2012 San Diego CA. 4 days for a wedding. I had less down time to rest than I really needed. Worst lesson was spending last day without a place for me to land and rest. We checked out of hotel, went to a family brunch, toured the USS Midway, which is walking, and then went to lunch, and then to the airport. I honestly spent most of that flight in tears. Dan quietly asked a flight attendant to arrange a wheelchair at the gate, and we were the last ones off. I sobbed my way up the aisle.

This carpet is the first sign you make it to Portland.

Newport, OR

 
Corvallis, OR, and Oregon Coast 2014. We were visiting while considering a relocation, so it was a combination of job interview, exploration of the area, and a side trip to the coast because it was so close. I found this climate to feel great in my body as well. I was able to rest a bit more on this trip, go at my own pace. I do remember the last day of the trip being difficult because again, I had no place to land to rest and we were flying out in the evening. We did end up using Google to find a coffee shop with couches for us to spend a couple of hours at before we got on the plane, but my pain did get quite amped up, and the airplane ride home was really difficult.(I believe we also had seats that did not recline those few inches, meaning the seat is all wrong for me) This trip I also discovered how awesome a chair massage in the airport is before getting on the plane.

Public art, in Portland

 

  Portland, OR 2015- This trip was for a writing conference my husband was attending, and a chance to explore a city we had just gotten a taste of. We decided not to rent a car, and instead use the plentiful public transportation available in Portland. What I did not really think about ahead of time was how much walking you have to do in order to use public transportation. Especially challenging was trying not to overdo it so I had enough steam to get myself home. I had to plan walking to a bus stop, waiting, riding(never a quick ride), and then walking more. I did give myself a “lay around and read” day in the middle, which was very valuable in the long run. It helped me feel good enough to borrow a bike and ride it around Portland for a little while, which may be my favorite memory. This was our first AirBnB experience, and while the particular place we chose was a bit more “2 buddies who need a place to crash” and less “2 adults getting away without kids”, we loved the experience of it. It made me realize that because I need more than just a spot to crash, I need to be good about choosing a place to stay that meets all of my needs and isn’t only cheap.

Rockaway Beach Reflections

My crew and support team

 

  Portland and Rockaway Beach, OR. Clearly we have a strong love of Oregon! This trip was special, because we took all 3 of our kids (2 of whom are out of the house) and made some great memories, had first experiences, and introduced them to the area we hope to move to eventually. We rented a car because with 5 people it was easier. We spent 2 nights in Portland, in a fantastic basement apartment we found on AirBnB. Then we drove to the coast for 2 more wonderful nights in an home right on the beach. (AirBnB) On that travel day we chose our route in order to go by a lighthouse. It ended up being about .5 mile walk from parking, all downhill. I kept thinking I should turn around, but no, I ignored my instincts. The walk back up was quite difficult. However even worse was the terrible pain my calves were in the following day. I have never experienced that sort of debilitating spasm,and I could barely walk. Our “home” had steep stairs, and to get down to the beach were even steeper stairs. I missed out on any time scavenging after the tide went out because I couldn’t get down to the beach. That made me recognize that I really have to make a priority list for myself when I travel. If I had thought ahead I would have absolutely saved spoons for the beach!

That sums up my "training wheel" adventures. Next up will be my awesome November dream trip to NYC! I rocked that city.

In the Beginning..Post 1

My name is Staci,that is with an (i). A lifetime ago, before I was married, or a mother, I imagined that I would travel the world. I wanted to really see the places I read about in books. I grew up with my nose stuck in a book, so my travel dreams were extensive. I wanted to smell the smells and taste the food. I wanted to meet people from every culture, going to them with my openness and curiosity.I wanted to know my country, to walk where history was made, or where culture runs deep.

I started strong, spending my senior year of High School in Mexico. Mexico was the alternate for the original assignment in Italy. Oh how I wanted to be in Europe, where everything I had read about,the history I had learned, was so within a train ride. However I could never have comprehended how much I benefit personally and professionally from speaking Spanish and having a love of the Mexican culture. I am so thankful that the universe orchestrated that change so long ago.

I returned from Mexico, launched into the world and I tried to grow up and settle down far too fast, became a mother, and then a mother of 2, then 3. When you are a happy busy mom, things like seeing the world just are not as important, or even obtainable. I still had a someday list, and tried to make the world as big as I could for my kids with camping trips and visits to family. Flying off to faraway lands, or states even, just was not in the budget or priority list.

Now, 2 of my kids are grown, the third pretty close. I am at a place in my life when I can start adventuring a bit more.We are little more financially secure, and have more freedom as our kids are adults. Here is the kicker though. The awful unfair frustrating part. I have a really rotten chronic illness that causes widespread pain, debilitating fatigue, insomnia, muscle spasms, brain fog, depression and a whole other list of "this shouldn't happen at this age!" symptoms and sensations. It is called fibromyalgia. I am 100% disabled at this point, as determined by a judge and my healthcare provider. It stinks. Truly it stinks.

So while I am at the season of my life when I get to think about myself more again, plan adventures with my husband, and can travel a bit more, it is all just so much more challenging for me! Some with fibromyalgia would tell you it is impossible, but I believe otherwise. Traveling has to look different, with alternate plans, slower timelines and different expectations. I am just not ready to give up on fulfilling some of my dreams to live big, my intentions to experience the world.

I am determined to learn to live big, to fill my journals with experiences and moments, and seek out that part of myself that is not limited to the couch. I want to seek out challenges and adventures that fill my soul, that awaken that part of me that is not limited to hot pads and prescription bottles, and days in my room.

Will you come with me?