Monday Journal

September 17, 2018

I went to sleep last night to the sound of the rain hitting hard upon the metal roof, roaring wind, and meteorologists breaking into the regularly scheduled programming that Mike had on the television to warn viewers of impending flood hazards for Southwest Virginia.  In contrast, there was the steady drip of water as it hit two separate enamel pans placed strategically on the floor after we discovered Mike’s efforts had not kept the east winds from blowing water in somewhere around the dormer window upstairs and depositing it through our first-floor bedroom ceiling and onto the floor.  I struggled to shut out the sounds as well as to shut down my mind as the remains of Hurricane Florence whipped around our modest 1930’s home situated at just above 2700 feet in the Blue Ridge Mountains.  Evidently, my body eventually gave in to fatigue and I slept. 

Now I sit in the darkness that is just before dawn, my ears straining to make out the sounds beyond my bedroom walls.  The dripping into the enamel pans has stopped, and that is a relief.  Each drip was like torture to my mind, knowing I was powerless to stop it, and recognizing the potential water damage that could be the result of prolonged exposure.  The winds have died down compared to their fury of last night, and the rain is much lighter.  It’s what I can’t see that worries me as I sit in the dark waiting for a bit of light to make things clear.  I can hear the roar of the water in the stream that is just below our house.  It sounds like a rushing river instead of the quiet mountain stream that lulls us to sleep through the open windows of summer.  Unwilling to risk going out in the dark and knowing there is nothing I can do about anything until daylight, I wait and wonder if trees or branches have fallen on the barn or outbuildings.  I wonder if  fences have been compromised during the storm and if all the cattle are all right. 

We never lost power, to my knowledge, and that gives me hope that we don’t have any major trees down.  It’s the sitting in the dark and not knowing that causes the mind to reach for all the possibilities.  It’s hard to sit in darkness and keep hope alive.  The longer the darkness lingers and the rougher the storms, the more one has to consciously choose faith.

That, in a nutshell, is my life lesson this week: the fostering of hope and the clinging to faith when darkness and storms threaten my peace.  This is not a new lesson, but a lesson that seems I must revisit time and time again.   Major events of this week are not new experiences either, although the way those events manifest themselves have brought new developments. 

Yesterday marked the ten-year anniversary of Josh’s death and I promised myself that I would not dwell on it in a negative way.  I only broke down once throughout the day, allowing the tears to briefly fall and that old, stabbing pain to take over for just a few minutes.  Then, I tucked it away where it coexists with my other emotions, grief having its own place of permanent residence in my heart.  After a decade, the feelings don’t take me off guard anymore.  I don’t fight them.  I just accept the need to hold the grief gently when it needs to be held.

The feelings the darkness outside my window evoke after the wild winds and rain of last night are similar to the twinge of anxiety I feel regarding the events of earlier this week that left me looking for answers.  I know everything will be ok when the light breaks this morning because we will roll up our sleeves and tackle whatever needs to be done and do the best with what we have been given.  As long as there is life, there is hope for the things of this world.  The same is true regarding the truths that are unfolding regarding some things with which I will struggle regarding my personal health.  Regardless of how things unfold, I will work my way around the darkness of the unknown, roll up my sleeves, and do that best I can with what I have been given.  I keep telling myself that my reactions are normal as I fluctuate between extreme thankfulness that things are not much worse and feelings of sadness that I must now learn to manage a chronic condition that has the potential of affecting so many different areas of my life. 

Monday, Mike and I made plans to go to Galax and work on our booths at Briar Patch Marketplace.  The previous week, we had worked hard on the new booth upstairs, but the downstairs booth needed a complete remodel.  Before going to Galax, I asked Mike if he would take me to The Blue Ridge Music Center which is not far outside of Galax along the parkway.  The center had advertised free flat foot dancing lessons and I wanted to attend.  While we were there, I noticed I didn’t feel well.  I was sluggish and kept sweating profusely even though it was actually cool outdoors and many folks had jackets or a light blanket around their shoulders when they were not moving.  I just couldn’t focus and removed myself to the back of the room.  Later as we worked on our booth, I struggled with intermittent hot flashes and fatigue.  I just kept pushing myself.  Mike realizing how tired I was offered to get me something to eat on the way home and I told him no that I would fix something.  I had laid out meat to thaw before we left the house.  He insisted and I was too tired to really think about cooking, so I gave in to his kindness.  We ordered and I wanted to try something different not realizing it was extremely spicy.  I love spicy foods but have not indulged in extremely hot foods for many years.  I remarked how good the Cali Burrito tasted but could only eat half of it.  By the time we got home 45 minutes later, I was violently sick and of course thought I had contracted food poisoning.  I lay on the bathroom floor writhing in pain not daring to stray too far from the toilet.  After about an hour, I literally dragged myself to the bed, fell into it and slept for about twelve hours only to awaken to find that I was passing straight blood.  Mike had left to go to Staunton for the day.  I made it to the barn and milked deciding that time would most surely rectify the situation. As the day progressed, things got worse.  By late afternoon, I decided that I needed to go to the emergency room.  I could tell I was dehydrated and the bleeding had not stopped.  The staff at Twin County Regional took me in immediately, examined me and ran blood work.  They were very good throughout the whole experience but once the blood work came back without anything alarming, like every other time I have gone to the emergency room, they gave me a proverbial pat on the head, and sent me home.  They did give me an IV to boost my fluid levels which was helpful. 

Since I was in my mid-twenties, periodically, I have had episodes of intense stomach pain and severe dehydration that have taken me to the emergency room in search of answers.  Time and time again the staff have taken one look at me, declared me one of the healthiest people they have ever seen, proceeded with basic blood work which revealed nothing, pumped me full of fluids and sent me home.  Sometimes I would go years between episodes and I would pass it off as nerves or stress or eating something that didn’t agree with me.  Two years ago, I went through this and could not get better.  The doctors kept acting as if it were nothing until I found a doctor with UVA who ran only one test other than blood work, and determined that I needed my gallbladder removed.  This seemed to alleviate my symptoms for a time, but in the last year I have struggled again, especially each time that we would travel away from home coupled with the extreme amount of stress in taking care of things for my grandmother.  Time before last when we were in Georgia, I became violently ill after eating pizza.  Again, I thought maybe it was food poisoning at first, but no one else got sick from it and besides the initial stomach upset, my symptoms of chills and low-grade fever lasted for days along with extreme fatigue.  Then, the fever went away and returned at intervals over the next few weeks.  I called my UVA doctor and he ordered a blood test.  It came back clean.  Nothing out of place about my blood counts and everything they tested for was negative.  The struggle was real.  I have always just pushed through believing that if I just try harder I can make things better.  I have always been tough and resilient when it comes to any health concerns.  I began to think that I was just a big baby and must be letting things that I use to be tough about bother me.  As I result, I just kept pushing myself and I just kept getting fatigued and sick. 

This was the first time there was blood and it was frequent and a significant enough quantity to make me realize that this wasn’t just a result of stress or eating bad food or my being a big baby.  Even the doctors at the emergency room who wanted to dismiss me couldn’t quite do so knowing that I had significant amounts of blood which I was smart enough to show them, knowing they would never believe me.  I did get extremely frustrated when they asked me if I was sure I knew where the blood was coming from and I assured them that I knew exactly what part of my body was bleeding.  With that, they told me there was nothing they could do for me and to call a gastroenterologist and get an appointment.  By the time I got home, it was too late to call anyone so the next morning I began calling until I finally convinced someone to take me immediately.  The other offices tried to schedule me an appointment several weeks out but I knew I needed to be seen as soon as possible.  After three hours of examinations, surveys, and blood work, the doctor said I have the classic symptoms and history for a diagnosis of ulcerative colitis, an autoimmune disorder.  He had his nurse load me up with a steroid in one hip and an antibiotic in the other and he gave me a three-day supply of samples for five different medicines.  He ordered a endoscopy which because we are self employed and have a large deductible will have to pay out of pocket and when I checked on the meds he prescribed, my bill came to over $4000 because we don’t have prescription insurance.  I opted to take the samples he gave me, strictly watch and adhere to the low residue diet he suggested and hope for the best.    The medications and steroids have helped, I am feeling much better, and the symptoms are under control.  We are waiting for additional blood work to come back from the lab which the doctor said will give us more answers.  He said the blood work addresses different areas from the basic tests that have been administered to me three times over the last three months. 

Now, I am trying to wrap my mind around the fact that I am going to have to most likely live on a very restrictive diet in order to keep my symptoms under control.  I am trying to sort out in my head the amount of money it is going to cost us each time I have a flare up and have to go on the medication to treat this illness.  I am accepting the fact that when someone has these types of issues it limits their social life at times as they remain close to the bathroom.  I am learning to plan for emergencies with extra clothes and wipes just in case I can’t find a bathroom quick enough.  I am learning that it is not just age that makes one struggle with feeling “unsexy” but that a chronic illness like this can make a person feel very undesirable.  I am learning that all the joint pain that I have struggled with for the last ten years goes hand in  hand with this illness and that when the chiropractor blew me off and basically told me I looked and acted too healthy to have autoimmune joint pain, I should have “followed my gut” (a perfect pun for this illness) and instead of feeling like I was being a big baby and suffering through it, looked deeper for answers.  I am coming to grips with the fact that my sudden hair loss and continued thinness of hair that began with the onset of severe stomach pain and subsequent extreme weight loss two years ago is often a side affect of colitis because one’s body is unable to absorb all the nutrients that it needs from the food that is eaten.  I am trying to deal with the fact that many of the medications given for colitis can also cause hair loss and acne.  Mostly, I am trying to come to accept the fact that this constant fatigue is more than likely going to be a part of my life with an autoimmune illness.  I have considered myself healthy, strong, and able to keep pushing myself to do whatever I needed to do.  Now I am finding that the more I push myself, the sicker I become.  I am going to have to change my attitude and my ways and that is going to be the most difficult thing for me to do. I have always made it through by propelling myself through the most difficult of circumstances by exerting myself physically. 

Even the events of this week left me feeling like I needed to “do” something.  I started dusting and cleaning areas I have neglected for most of the summer as I have been busy with canning and outdoor activities.  I didn’t push too hard but worked steady.  It was something I could do and still stay close to the bathroom.  I needed to keep my hands busy and feel accomplished even if it was just housework.  It was too much too soon and the fatigue took over leaving me worthless the next day.  Then I felt like a big, baby all over again.  I’ve never been one to whine about how I feel.  I have never been one to let physical discomfort keep me from doing the things I want to do

During my down time this week, I have begun researching diets and natural ways to manage ulcerative colitis.  I have become overwhelmed at all the differences of opinion and the lists of foods that are touted as off limits depending on which diet one chooses.  If I combined all the ideas, I am convinced there would be nothing left that I could eat.  For now, I am following the low residue diet prescribed by my doctor and that seems to be working to relieve my symptoms and ease discomfort.  I have started a food journal to help me to keep track of what I am eating and how my body reacts.  I am researching eating habits that can become life long habits believing that food does contain healing properties if we can find the right combinations for our individual needs. 

 I am having a mixed bag of emotions about all of this:  anger, grief, fear, and then relief that it’s not something much more serious.  The emotions are vicious cycle, the darkness of the unknown playing tricks on my mind as I wait for the dawn and answers to surface. 

As I finish writing down my thoughts and recap the events of this past week, daylight has made its appearance through an overcast sky.  Rain is coming steady but without the ferocity of last night’s storm.  I can see the trees blowing in the wind, but they are still standing and while the mountain stream outside our window roars and swells, it has not reached high enough to keep us from crossing the bridge should we need to leave our property.  It’s not over yet and the effects of the continued weather off Hurricane Florence may cause additional issues as flooding continues in the mountains, but just being able to see clearly past the window brings comfort.  

The days and weeks ahead will bring light to the issues with which I currently struggle, I am sure of it.  Life is what we make it and I plan on continuing to make mine the best I can possibly make it.  The storms only serve to make us appreciate the quiet days and any damage that is done is cause for us to focus on the task at hand. 

It’s time for me to pull on my boots, throw on a ball cap, grab a jacket and head for the barn.  I am thankful for things that remain the same and the comfort farm life brings to me here in the mountains. 

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