Spirit of the Heart Award- Dedicated to All of You!

Yesterday Brian, the twins, and I went to Sibley Hospital in Washington D.C. to hear Dr. Neil Spector speak. He was incredible! His story is one of perseverance and hope and I was so thankful to be able to attend his lecture. He not only talked about his own battle with Lyme, which caused him to have a heart transplant, but he also discussed how his experience and research in oncology is closely related to Lyme and the treatment of the borrelia burgdorferi bacteria. It truly was fascinating! I was so happy to shake his hand and thank him for all his hard work in bringing this issue to light and his help in pushing current research forward for Lyme Disease. I was gifted his book, Gone In a Heartbeat: A Physician's Search for True Healing, by the amazing director of Harford Lyme Advocates, Janet Jensen, and started reading it immediately after the lecture yesterday. It is captivating and I highly recommend it to anyone with a chronic illness or who takes care of someone with a chronic illness. He truly is an inspiration with his will to live and his compassion as a healer.

One of the best moments of the day for me was after the presentation when I turned to see my own Lyme doctor in attendance! How wonderful is it that the man taking care of me is taking his personal time to seek further viewpoints and theories behind this tricky disease? It made my heart soar to know he is still seeking education and understanding from his colleagues even though he himself has written a book about beating Lyme Disease. Awesome.

In addition, NatCapLyme Association honored me with their Spirit of the Heart Award to recognize my work in raising awareness of and funds for Lyme Disease and other tick borne illnesses in Harford County and beyond. It is my honor and pleasure to give back by supporting research, education, and legislation for this horrible disease. I want to dedicate the Spirit of the Heart Award to everyone who has supported me in my efforts with my Ticked Off events over the last three years! I could not have done this without the undying help from family, friends, fellow artists, and patrons! We are getting the word out and making a difference! This award is for all of you! Thank you! Here are a few pictures from the event:

Dr. Neil Spector- a unique voice for the Lyme community

Monte Skall of NatCapLyme giving me the Spirit of the Heart Award

Spirit of the Heart Award from NatCapLyme

Susan Green, Esq.

Susan Green is the amazing lawyer who has helped and continues to help push through legislation to protect Lyme patients in Maryland and Virginia. She had the honor of introducing Dr. Neil Spector prior to his presentation.

One of the many slides Dr. Neil Spector had in his presentation explaining the similarities between cancer and Lyme Disease.

Dr. Neil Spector's Book

Again, thank you all for your continuing support in raising awareness and research funds for Lyme Disease.

xo

Laveder-Digital Painting by Tracey Grumbach

Lavender-Portrait of a Flower Series-Artist Tracey Grumbach

I created this simply because I needed joy. Lavender, my most favorite plant on earth, brings me joy in more ways than one. I simply love the color and the delicate flowers. I love the way it smells. Actually, it is my favorite smell in the world. I diffuse the essential oil throughout the house frequently and also dab it on diffuser necklaces and bracelets I wear. If I could fill my house and yard with lavender, I would. One day I would like to have a whole garden bed just for this plant. I'd harvest the flowers and create beautiful satchels filled with dried flowers to add to each of the drawers in my dresser.

Monday, when Brenna, the twins and I went to Longwood Gardens, we stopped in the gift shop on the way out. When I saw they were selling lavender plants, I had to have one. With all of the difficult news we have absorbed this week I just wanted something in the house to make me smile and remember my blessings. So, I bought it, brought it home, put it in the sunniest window I have, and to remind me of its beauty even when it has faded into the darkness of winter, I digitally painted it. I knew I wanted to use a touch of robin's egg blue in the background because it is my favorite color along with lavender. So, that is what I did. I think I will make two prints of this...one for me and one to sell. I am emotionally attached to it. It reminds me that no matter how ugly the world gets, beauty is just a glance away. 

Today will be a very difficult day. Our family will be joining the rest of the community in gathering together and saying goodbye to a dear friend lost. It is a stark reminder that bad things happen to good people, life is way too short, and we are never promised tomorrow. Please send love and prayers to a grieving family and a grieving community today as we all celebrate a young life lived beautifully.

Just a quick reminder that I will be working at Arts By the Bay Gallery today from 11AM-3PM if anyone would like to stop in and chat art or Lyme. I'd love to see you. Have a wonderful day and remember to hug all your loved ones tight.  See you back here on Monday.

xo

This Topsy-Turvy World- Digital Art

Tracey-Grumbach-Harford-County-Artist

What a day yesterday. Thank you all for your prayers and well wishes for both Brenna and I. After a very difficult and long day yesterday, we are home...she is finally recovering peacefully after a very difficult bout with anesthesia and pain, and I am coming to terms with the information I received from reviewing my tests with my doctor. Prayer works, and I am so thankful for all of yours.

I received many messages yesterday wanting to know how the latest testing came out related to the liver function tests and the ALCAT test but I had my hands full with helping Brenna recover from her emergency oral surgery. So, I will answer everyone at once here on the blog today...first, my liver function tests were completely normal, praise the Lord. My liver seems to be holding up to the massive amounts of antibiotics I am taking. According to my doctor, I am definitely improving from the infections but he still foresees at least several more months ahead of treatment. Since beginning his program, I would say on good days there is about a 70% improvement in my symptoms than when I started. Also, the good days are becoming more plentiful and the bad days are becoming less severe and less frequent. So, I will continue antibiotic therapy to try and regain the other 30% to a full recovery.

As far as the ALCAT test, I was pleasantly surprised with the results. I was expecting to have a TON of my favorite things on the severely reactive or moderately reactive list, but I didn't. Most of the foods on there were foods I don't eat often and most of the chemical additives were ones I avoid anyway. The molds I am reactive to I don't know much about and I have to do more research on how to limit my exposure to them. I did find out that I am severely reactive to kale, kelp, leaf lettuces (except for iceberg and romaine), nectarines, scallions, and sorghum. I eat kale and leaf lettuces almost on a daily basis, so that stinks. I love nectarines (but don't eat them that often) and scallions, so I need to remove those from my diet as well. I will replace the leaf lettuces and kale with baby spinach, which I also love, so that won't be a big deal unless I am trying to eat out. Many salad bases at restaurants I will be reactive to. I am mildly reactive to beef (and lots of other things), so I have to limit my exposure to that to once a week. Not shockingly, I am reactive to gliadin (which cross reacts with gluten), which means I have to have a gluten free diet (which I've been on for a long time) and also to casein, so I still need to remain dairy free since it cross reacts with whey. On the bright side, I can add back beans, wild rice, and gluten free oats to my diet since I am not reactive to those.

The only disappointment, if you want to call it that, was finding out I need to start a rotational diet to limit my exposure to all foods so that I don't become sensitive to them. With my current leaky gut situation and my current antibiotic treatment, I need to control my exposure to all foods to once every 4 days to lower the risk of adding more foods to the sensitive list. So, that is going to take some serious planning, preparation, and dedication on my and my family's part. It doesn't seem complicated, but it is considering I usually bulk food prep so I have meals throughout the week. Now, only being allowed to eat the same fruit, vegetable, and meat once every 4 days, that eliminates my ability to prepare that way and instead I will be cooking more frequently. I am also not quite sure how to do this with eating at restaurants and while on vacation, but I will figure those things out as we move along.

My doctor did say I have a magnesium deficiency that is adding to some of my symptoms, so I will be taking a supplement for that. He also said it is time to start exercising again and has ordered me to walk, do yoga, or swim/water walking 30 minutes 3 times a week. I am not sure what he meant by this, but he said when he listened to my heart he could tell I needed to exercise. That kind of scared me because no one wants something wrong with her heart. 

On an exciting note, The Mighty finally released my 4th article, To the Chronically Ill Parent Who Feels Like a Failure. I am really proud of my articles because I am trying to help those who are in my shoes to know they are not alone. They are deeply personal to me. The other day I went to hug someone and she backed away saying she was wearing perfumed products and from reading my article Why Hugging You Is Not Good For My Health, she knew that it could affect my symptoms for the rest of the day. That made me smile because it was one small example of my writing affecting people's thinking and actions.

I created and titled this piece Topsy Turvy World because that is how I am feeling today. Like my world is beautiful yet off kilter somehow. I hope you like it.

Have a great Wednesday! I will by lying low and nursing my baby girl!

xo

Silent Finger to the Sky and Stars- Digital Art by Tracey Grumbach

An instinctive taste teaches men to build their churches with spire steeples

which point as with a silent finger to the sky and stars.

-Samuel Taylor Coleridge

Just as I have an obsession with barns, I also have an obsession for the architecture of churches. The subtle differences in details between each of them intrigues me. I am particularly fond of steeples and bell towers. One day I plan on making a collage of all the different barns I've photographed and separately, all the churches I've photographed. I think it will be cool to see them all together. I don't have any clue just how many different ones I've taken. Probably dozens!

I have my monthly doctor appointment today with my Lyme specialist. Except for last week, my pain levels have been a lot better while on this restricted diet, which is a plus. I am still dealing with ridiculous levels of exhaustion, but hopefully I can find answers to that at today's appointment. He will be presenting the results of my ALCAT blood test and helping me fine tune my diet so that I can avoid trigger foods for my system. Frankly, I am petrified that my digestive tract is so screwed up that all I'll be able to eat is lettuce and cucumbers. I will find out for sure today and let you know on tomorrow's blog. I will also find out the results of my liver function tests. I pray that my liver is holding up to the onslaught of antibiotics I am still on. I would appreciate any prayers for the doctor's wisdom and my patience as we move through this difficult process.

I found out late yesterday afternoon that Brenna needs to go in for emergency oral surgery to remove her wisdom teeth today. Please say a prayer for her as well. I hope the surgery goes smoothly and her recovery is swift. Poor thing got back from Canada Sunday night, had a emergency dentist appointment yesterday afternoon and surgery scheduled for 11:00 today. I am sure this is the home coming she was hoping for!

I'll see you here tomorrow with updates on my doctor visit and Brenna's surgery. Happy Tuesday, y'all.

xo

Hello Darkness, My Old Friend- Digital Art

It has been quiet around here. Despite my plans for an active summer full of exploring with the twins before they return to public school in September, my body has decided not to cooperate so far. I've been confined to the house pretty much for the last week except for an outing to the Hippodrome with a friend and a family picnic for 4th of July...both of which I rested in chairs.  Yesterday I had a close call with a health crisis that almost sent me to the hospital, but in the end it subsided and I was able to stay home, under the careful and vigilant watch of my oldest daughter.  I sure am going to miss her when she moves away next month. I still have tons of hope, though, and I see a future full of activity and exploring. I'm just not quite there yet.

Since I haven't been far from home, I have been busy with creative things around the house. This was the view from my front porch when a summer thunderstorm was rolling in. Not too shabby of a view! I've also been working on my Figurescapes class and I have completed my second project. I'll show that to you and talk more about that here on the blog tomorrow. I've also been writing. Yesterday, I told you I was writing another article for The Mighty and I did, but after going back to edit it yesterday after lunch, I hated it. Yep. I absolutely hated the article I wrote. The tone was so negative and I didn't like how I presented the material. So, today, I plan on rewriting the article, but this time with a positive and hopeful tone!

Today looks to be more of the same, except maybe I will pull out some art materials and make some art paper and collages I can use in upcoming artwork I have planned. It will be fun to do something with physical materials instead of a just a computer. I hope your Thursday is the best Thursday you've ever had! I think I'll throw on some relaxing music, fold some laundry, and then get started with all of these creative endeavors I have planned. Till tomorrow...

xo

Let Go- Those Precious Morning Hours

Let Go- Digital Collage by Tracey Grumbach  (stock image of woman from Pixabay)

In the very early morning hours my alarm goes off. I don't have anywhere to be or anything to do except start the day with my first dose of medicine that needs to be taken on an empty stomach...thus the 6:30AM chimes dinging on my iPhone. After taking the two pills that are on my bedside table, I breathe in the day and often times climb out of bed despite the exhaustion. I never have been an early riser and I still hate it. However, I have a new appreciation for those quiet hours before the kids rise and start their day. I have claimed that time for myself...to let go. To do the quiet things that bring me joy.

Today I spent this time beginning a new art project in the online class I'm taking...Figurescapes. I found myself not only learning all about an app I've had for a long time but never used, but I also felt myself let go as I began the project. I was so mindful in that moment...nothing else existed except for me, my iPhone, and the stylus as I drew an abstract figure on the screen. All the thoughts, feelings, worries, and obligations this day will bring melted away. I didn't allow myself to become "precious" (as one of my favorite art podcasters, The Jealous Curator of Art for Your Ear, calls it) and didn't freak out when I made mistakes. Those mistakes turned into beautiful opportunities to make my work unique and unlike the instructor's. It was free flowing and fun and invigorating to be doing something completely unlike the art I have done in the past. Before I knew it, the two hours had passed that I need to wait until I eat. I didn't even feel a hunger pang the entire time I was working because I was so completely engrossed.

This "let go" time for me is so important in my healing and in my sanity. Just as I was finishing up the very first step of this art project, I heard footsteps and toilets flushing downstairs in our living area. I came back to the present feeling refreshed for having this time to myself to be creative, present, and mindful. Now I am ready to care for my family for the rest of the day, but my mind will be on this new project, ever anxious and excited to grab just a few more minutes to myself to see where this project takes me next.

Tonight I will be working the Opening Reception at Arts By the Bay Gallery from 6PM-9PM where 5 of my framed pieces will be hanging and 10 matted pieces will be available in the print bins. I hope you can stop in and say hello...I love meeting everyone!

Have a beautiful weekend. See you on the other side of the weekend. xo

Heston Farm- Harford County, Maryland

Heston Farm- Altered Photography by Tracey Grumbach

Some days I just enjoy riding around my beautiful county taking in the scenery. Since I am not very mobile at the moment, taking "Sunday" drives any day of the week has become a form of therapy for me. I particularly like being the passenger so that my attention can be elsewhere, drinking in the deliciousness of the summer landscape. Being out of the house and riding around the county reminds me that the world is bigger than me. My problems seem much smaller in the wide open landscape. Being in nature, hearing nature, smelling nature, and seeing nature has a psychological healing affect. It is refreshing to know beauty doesn't cease to exist in the midst of pain. Light doesn't cease to exist in darkness. Drive therapy...that's what I'll call it. My only wish is that there was more room to pull off on the side of these country roads so I could take more photographs of the glorious sights.

This farm is quite beautiful. It is owned by a local family, a family who has a child/grandchild the same age as my twins. They are a wonderful family and we buy hay for our horse from them. One day I will accompany my husband when he goes to buy hay and take more pictures of their amazing property. Hopefully I will be in much less pain and more mobile by then...it gives me something to shoot for!

I hope everyone has a beautiful weekend. Mine will be filled with rugby games, graduation parties, and taking down my current art show while delivering new art to the gallery.  I will be food prepping and doing some serious medicine schedule planning to make sure I don't get off track. Getting out of the house is not easy when your on such a strict time schedule (every two hours) of eating and taking medicine. Thank goodness my husband and kids are helpful in keeping me on track and praise God that I am surrounded by friends and neighbors who understand. God is good!

xo

Hope

Kousa Dogwood

There was never a night or a problem 

that could defeat sunrise or hope.

Bernard Williams

Hope is knowing the sun still exists even when the night of the new moon wraps your world in total darkness. Hope is hearing a symphony burst forth out of the discord of individual instruments. Hope is thinking you are totally and utterly alone in the world in your experience and finding someone else who understands. Hope is the sound of a baby's laughter. Hope is going to sleep when the bud is tightly closed and waking to the flower spread open in all its glory. Hope is knowing that nothing is impossible in the hands of God.

I'll be honest. There are many times along this journey where I have lost hope. I have reconciled myself to the fact that for the rest of my life I will live in pain and uncertainty, with limited mobility,  and a burden to the rest of my friends and family. When in the midst of so much unrelenting pain, it is easy to lose hope; to see only the darkness; to forget the sun is behind the clouds. But, despite how low I became, I hung onto the my last shred of faith which resided only in God, that He knew the answers and loved me enough to show me the path to healing in His time.

So, when I went to my doctor's appointment yesterday, hope was difficult to find. I have been in Chronic Lyme Disease and co-infection treatment over and over only to relapse again and again. Over the years I have times where I feel close to normal only to fall into pain and worsening symptoms again. I have walked this walk, done all the things I was told to do and still was sick on an almost daily basis. Having only started treatment (again!) a month ago and knowing that things often get worse before they get better didn't help my mental state. Hope was running thin and I could feel depression set in. I wanted there to be new answers, new things to try, new explanations as to what was happening inside my body. However, I felt like I was rewalking the same path I had walked before surrounded by the same scenery.

My prayers for renewed hope were answered yesterday.  After going into more detail with my LLMD (Lyme Literate Doctor) about my joint pain and the history of stiffening, swelling, and pain in every joint including my knuckles, toes, knees, shoulders, hips, back...you name it I had pain in it either currently or at some previous time; he suggested that my pain may not have everything to do with Lyme but with a problem referred to as leaky gut. Sounds gross, right? Well, actually it is gross. Leaky gut is when your stomach becomes damaged from prolonged illness, prolonged antibiotic treatment, or other factors and small particles of food that haven't been digested get passed through a hyperpermeable stomach lining into your blood stream. Once in your bloodstream, these tiny particles can become lodged in your tissues and the immune system then attacks the particles thinking they are bacteria or a virus, causing inflammation, pain, and stiffness (among other problems). This issue can become so severe that it can render patients with such arthritic pain they end up in a wheelchair. So, to see if this is a factor in my situation, the doctor ordered a blood test that will evaluate how my white blood cells react to over 450 individual foods, additives, colorings, molds, functional foods, medicinal herbs and chemical substances. This will tell me what food sensitivities I may have that could cause inflammation and pain. This renewed my hope for better days because it makes total sense to me. I do notice a correlation between eating certain foods and having a flare of my symptoms. So, this may not be the total answer, but if avoiding trigger foods can help reduce my pain levels in the long run, I am willing to do whatever I can to help return my life back to normal.

So, I'm still clinging to the hope that more answers may be out there for me, despite that voice in my head that keeps repeating, "Just give up." Please pray that this course of action may find some relief for me. I have to wait for my next appointment (a month away) to get the results, so in the meantime I am on a severely restricted diet to see if restricting certain foods (such as the nightshade category) will help with my pain levels.

Thank you, as always, for your continuing prayers, cheers, and support.

xo

Why I Lie When You Ask Me How I Feel

Lonely Road- iPhone Photography by Tracey Grumbach

Honestly, I totally get it. It makes perfect sense as to why people who know me and care about me ask me how I am feeling every time we talk to each other. In a way it is flattering because people just want the best for me and are hoping that I am starting to feel better while I am in treatment for Chronic Lyme Disease. But if I am completely honest, this question is a trigger for me and here is why....

I am going to lie to you even though I don't want to lie. "I'm fine." or "I'm awesome." or some other version of this answer is typically a lie and I am being sarcastic. One day I hope to give this answer and mean it but for now, it is a lie.

You may wonder why I would lie instead of just telling the truth. Well, for one thing I get so tired of talking about the illness that I just don't feel like going through the list of symptoms I may be feeling at that exact moment. So I say I am fine. When I am around other people I want to talk about normal every day things like everyone else. The weather, world events, sports, our kids, heck, even politics would be a better conversation than how I am feeling. I just want to be "normal" and have non-sick normal conversations.

Secondly, talking about all the symptoms over and over just reminds me how crappy I really do feel and honestly, I don't want to be or need to be reminded. Trust me, I know just how horrible I feel and trust me, you really don't want to know and probably, honestly, don't care.

Another reason I may lie is because I can't gauge just how sincere the question is. Most people just say "How are you?" as a conversation starter and don't actually want to know truthfully how you are feeling. In our society "How are you" is a pleasantry, not a real question. Imagine being in a check-out line at the store and the cashier, who is a complete stranger to you, says, "Good morning, how are you today?" Yeah, they don't really want to know how I am. They don't want me to say, "Honestly, I am barely able to walk, I feel like I am going to vomit at any moment, I have a splitting headache, the soles of my feet feel like they are bruised and have 10,000 needles sticking in them, my joints are so stiff I can barely move, I'm exhausted and want to lie down in the middle of this gross floor, I have 20 different muscles cramping and twitching at this exact moment and I am not sure if I will remember where I am when I am driving home. And how are you?" It just wouldn't be socially acceptable. So, I say, "I'm fine, how are you?"

Another scenario when people ask this question is they don't understand Chronic Lyme Disease. They expect because I am dressed and am wearing make-up that I feel fantastic even if I am dying inside. Lyme is an invisible illness that no one can see. I am desperate to feel normal, so on good days I do enjoy getting dressed and putting make up on. But a "good" day may just mean a day I am not bedridden. It doesn't necessarily mean I actually FEEL good. So, if I am dressed with make up on and someone asks me that question and I tell them how sick I really feel it seems like I am crazy, a hypochondriac, or a liar. So, the best course for me is to say I am fine.

Sometimes, people expect that because I am currently in treatment (on antibiotics and other herbals) that I should feel back to normal in a few days like one does when being treated for strep throat or an earache. They think if I actually have a good day and can go to the store shopping that I am cured. No, no, and no. That, unfortunately is not how Chronic Lyme Disease works.  I can have a decent day only to be followed by a day I can't get out of bed for seemingly no rhyme or reason.  Those who have Chronic Lyme Disease are on long doses of antibiotics (months and months) and are not "cured" in 7-10 days like other illnesses antibiotics are used to treat. We have good days and we have bad days. We can be in remission for months (and sometimes years) only to relapse again. So, it gets confusing to people who haven't lived with the disease to understand that sometimes I can go out and have a nice time and the next day (or a few hours later even) I am in bed unable to function. So, saying "I'm fine" is just so much less complicated than explaining all of this every single time someone asks how I am. Really, it is a conversation killer.

Last, I may lie simply because I am a people pleaser. I am much less of a people pleaser than I used to be, but I hate to disappoint people.  So, when you ask me how I am feeling and are expecting (and usually I can tell when people are expecting this answer) to hear, "Better!" or "Great!" because of one of the many reasons I've already listed, I just want to say what you want to hear. It is just simply easier, less stressful, and less complicated to let you think I am good.

In all honesty, I hate when people ask me how I am feeling. It is just awkward and confusing for me. What I would prefer is, "What's going on in your life right now?" or "What's new?" or "How was your weekend?" These questions let me avoid all talk of illness and let me answer with things that are happening in my life despite Chronic Lyme. I can guarantee you would like hearing about my kids, my art, my weekend, or my view on world politics better than hearing me lie to you or list all my Chronic Lyme Disease symptoms to you. That I am sure of.

xo

The Keepers Keeps Your Mind Spinning

The Last Gasp of Winter-Altered Photography by Tracey Grumbach

With the many hours in bed resting my body during CLD (Chronic Lyme Disease) treatment, I have recently become consumed by the documentary showing on Netflix called The Keepers. It is about two former students of Archbishop Keough (now Seton/Keough High School, which is scheduled to close down permanently this month), who are trying to solve the cold case of Sister Catherine Cesnick's murder back in 1969. What they uncover is simply terrifying and mind-blowing, not to mention addictive for the viewer. Every episode I kept telling myself that this can't get worse and every time I was wrong; it did get worse. This case fascinates me not only because it has mystery, intrigue, corruption, love, murder, and cover-up but also because I grew up and still live in the Baltimore area and am familiar with the locations throughout the documentary.

To make it even more personal to me, I happen to know one of the amazing former students of Sister Catherine, who is leading the charge to get this case solved. Her name is Gemma Hoskins. Gemma was my teacher mentor when I first started teaching in Harford County. She was/is a wonderfully caring and smart person and I am honored to have known her back in the 90's. She sparked inspiration and excellence in me as a young teacher and I will be forever grateful for that.

If you have Netflix, I highly suggest watching this documentary by the amazing director, Ryan White, who put this together beautifully. As soon as an episode ended, I was craving more.

I chose to pair this art piece with this post because I felt it must represent the lonliness and helplessness the girls in this case felt during their teen years. I won't say more because I don't want any spoilers here for those who have yet to see the documentary, but after you watch it you will totally understand the feeling I was going for here.

 Have a wonderful week. xo

What Would You Do If You Knew You Couldn't Fail?

failure-
noun

1. lack of success.
2.  the omission of expected or required action

Reading a magazine the other day, The Magnolia Journal, to be exact, I came across this question...What would you do if you knew you couldn't fail? It really got me thinking, especially since failure seems to be surrounding me lately as I navigate through another round of treatment for Chronic Lyme and co-infections. I don't seem to be able to do much lately due to the symptoms of the disease and the side effects of treatment holding me back. Since 2014 I have defined my life as "before" I was sick and "after" I was sick. I've actually had to grieve the life that I lost when this disease took over my every waking (and sleeping) minute. I used to be an active, go-getter, type A person and now...well, now I'm lucky to make it through the day.

So, back to the question...what would I do if I knew I couldn't fail? What would I do if my body and brain would cooperate and allow me the life I long to have? What would I do if I could string more than a few hours together when I felt well enough or had enough energy to something more than lie in bed?

Artwork by Katie Vernon- katievernon.com

 I'd travel. I would buy an RV and tour the beautiful United States writing about and photographing my adventures along the way. I love learning about new places, new people, history, cultures, and landscapes. My life would become one long, glorious road trip stopping wherever and whenever I found something interesting.

I'd also love to become a Court Appointed Special Advocate and help foster children by being their voice in the courtroom. Since I adopted twins back in 2011, who had a wonderful CASA, I've wanted to give back to the foster/adoption community in any way I can. One day, when I am in remission, I will do this!

So, what is it that you would do if you knew you could not fail? What dreams do you have?

xo

Triple Silos- Enhanced Photography by Tracey Grumbach

Two days ago I posted on Facebook about new challenges with my health. Here is the post for those who are not on Facebook.

Friends and Family...I debated all night whether to publicly share my latest test results with you all because I absolutely do not want any sympathy. In the end, I decided to share because I made a promise that I would be transparent about my daily life living with chronic disease and I will honor that promise.

As many of you know, I have not been feeling well for many months now. My husband was able to secure me an appointment with a local leading doctor on Lyme Disease. He specializes in Lyme and co-infections and ONLY sees patients for that. Last month I had my consult with him, he examined me, and ran many, many lab tests. During the month it took to get all the labs back I continued to deteriorate health wise. Yesterday, I had my second meeting with the specialist and he shared the news that I tested positive for 6 different infections...Lyme (Borrelia), Bartonella, Ehrlichiosis, Babesia, EBV, and c. pneumonia. Each one of these infections is a serious infection on its own, but all together they are just completely destroying my health. His feeling is that I have had several tick bites over the years (some I recall) in which the ticks have infected me with one or more of these infections.

The good news is the doctor has a plan of attack to try and finally kick all these buggers out of me. It is not as easy as it sounds because of the stealth way many of these infections hide in your own cells or tissues, including my brain (which explains why I am having word retrieval issues still as well as episodes of becoming confused and disoriented.)  I will probably be in treatment for at least a year.

Unfortunately, the treatment, at least at first, will make me sicker before it will make me better. This is due to die off of the bacteria which then release toxins from their cell walls into my system. These toxins can make me very sick as my body tries to get rid of them. (Herxheimer Reaction) To complicate matters, I have a genetic mutation that does not allow my body to detox well on its own. So, the first 6-8 weeks of intense antibiotic and anti-parasitic medicines will be hell. On top of that I am bound to a very strict anti-inflammatory diet while in treatment to try and minimize inflammation in my body. If you see me and think I am losing weight, the chances are that you are correct.

To be honest, I just want to give up. I've been trying to kill these suckers for so long and they keep winning. But I won't give up because of my husband and kids. I have many things to be thankful for and I will count my blessings.

As I go into battle mode trying to make myself well again, I may disappear for a while. Body aches, headaches, nausea, exhaustion, etc. are part of the healing process so posting on the blog and on Facebook will not be a priority for me.

Please, no comments on how sorry you are. I know people don't want this for me and I am so thankful for your kindness, but the last thing I want is sympathy. I am blessed to have supportive family and friends. So many have stepped forward already to help with Brenna's graduation party because I am just not able to do it and I want the best for her. Truly, I am just sharing for awareness about the severity and longevity of tick borne diseases. PLEASE protect yourself and your kids. This summer is so very dangerous as the tick populations boomed over the winter.

If you'd like to help, prayers would be appreciated. Not only for me, but also for my family who has to see me go through this again. It is not easy on them. Thank you!

I am sharing this for two reasons...first to let you know my posting here on the blog may be sporadic. My priority right now is absolutely my health and my family, so art will be taking a back seat for a while.

 Thanks to all of those who have already reached out and offered help with my daughter's graduation party, with my twins, with meals, etc. Your kindness is humbling and appreciated. Prayers are appreciated. In the meantime, I will post here when I am able.  Have a great Memorial Day weekend.

xo


P.S.

I am still collecting donations throughout the month of May and donating a portion of the profit from the sale of my art in the month of May to NatCapLyme.org- an organization that helps with research, education, legislation, and support for those suffering and treating Lyme Disease. If you would like to help people like me and so many others who suffer daily from this disease, please visit Arts By the Bay Gallery in Havre de Grace where there are donation boxes until May 31. If you can't make it out to the gallery, please consider donating online using the following instructions.

1.  Go to NatCapLyme.org's donation page.
2.  Click on Fundraising Event in the tab section.
3.  In the Select Event for Fundraising dropdown menu choose the bottom one...Arts By the Bay Gallery Ticked Off Lyme Disease Awareness Event.
4.  Fill out the rest of the form and submit!

Ticked Off- Lyme Disease Awareness Event Thank Yous!

A few of the sour faces from the "Take a Bite Out of Lyme" challenge!

I am so humbled and overwhelmed by all the love and support over the past two Fridays. It has been a whirlwind of activity getting this spring show together, being the featured artist, and pull off this Lyme Disease Awareness Event. So many people stopped in, talked with our representatives from Harford Lyme Advocates, took the "Take a Bite Out of Lyme" challenge, donated money, bought art, and participated in our basket give away! It was wonderful to meet new people, hear their stories, and tell them mine. I saw old friends, new friends, strangers, and family! But most important of all is we are getting the word out about this terrible disease!

Special thank yous are due to Janet Jensen and the rest of the crew from Harford Lyme Advocates who supplied all the educational literature and expertise to answer questions about Lyme Disease.

Thank you to Arts By the Bay Gallery and Pat Fair (art director for the gallery) for letting us use the space to hold this event. Also, a very special thank you to the artists who came out to support the event including those who worked the desk.

A heartfelt thank you to Kimie Ranken, the amazing jeweler who took my vision for a Ticked Off necklace and made it a reality even better than what I dreamed. Despite a serious illness and being hospitalized, she, with the help of her wonderful husband, Bill, delivered the necklaces on time for the event even though I told them not to worry about it. Truly, they are amazing, loyal, and selfless people. As she moves forward with treatment for her medical issue, I offer prayers of healing. More about the necklaces later in the week...I still have some in stock to sell so I will be setting that up shortly!

A huge thank you to KWM Cares and everyone at Kelly Wealth Management who made a very generous flat donation to NatCapLyme Association.  Your gift was such a surprise and appreciated! It will be put to good use.

Most of all, thank you so much to my amazing family and friends. I could not have survived these past months with my sanity intact without you all. To my husband, who tirelessly worked on the framing of 43 pieces and has been by my side every step of the way cheering me on; my kids, who helped get supplies together and ready for the event, worked the room at the event, and told me I made them proud; and to my friends who despite having ten million other things better to do, still came out to support me and this event. I am truly blessed to have each of you in my life, I love you all,  and I owe you one ;)

Last, but certainly not least, thank you to the patrons who bought my art! It is my dream to have people connect with my art in a way that has deep meaning for them. It was such a pleasure to meet and talk with the buyers and hear why they chose the pieces they did. I will be posting the sold items up on Facebook throughout the week. You are what makes me keep working, trying new things, and producing art.

While the Ticked Off event is over, Lyme Disease Awareness Month is not. I am still collecting donations throughout the month of May and donating a portion of the profit from the sale of my art in the month of May. So, if you were not able to make the event but would like to help people like me and so many others who suffer daily from this disease, please visit Arts By the Bay Gallery in Havre de Grace where there are donation boxes until May 31. If you can't make it out to the gallery, please consider donating online using the following instructions.

1.  Go to NatCapLyme.org's donation page.
2.  Click on Fundraising Event in the tab section.
3.  In the Select Event for Fundraising dropdown menu choose the bottom one...Arts By the Bay Gallery Ticked Off Lyme Disease Awareness Event.
4.  Fill out the rest of the form and submit!

Thanks so much for any help you could give. This really is a great organization. I attend the support meetings of my local chapter and they are champions of getting the word out in Harford County and beyond.

xo

The Day Still Dawns- Digital Art by Tracey Grumbach

Despite the gloom
Despite the pain
Despite the rain
Despite the chill
Despite the exhaustion
Despite the grumpiness...
The day still dawns

and the show will go on.

Despite my disappointment in the weather and despite my horrible sore throat, the Ticked Off- Lyme Disease Awareness Event will still happen tonight from 6-9PM at Arts By the Bay Gallery and it will be fabulous!

Stop in for your chance to:

1.  See amazing art by a variety of local artists.
2.  See my art and hear my story about my journey through Lyme Disease.
3.  Take a bite out of Lyme by participating in our Lyme Disease Challenge.
4.  Pick up a coloring book and a bracelet making kit for your kids.
5.  Enter to win a fabulous prize basket filled with amazing art donated by local artists.
6.  Mingle with lots of art lovers and Lyme Warriors.
7.  Gain more knowledge about Lyme Disease and how to prevent it!
8.  Much more!

I will see you all tonight! Be sure to stop and introduce yourself and say hello!

 May is Lyme Disease Awareness Month...Would you be so kind as to make a small donation to the non-profit organization I am passionate about, NatCapLyme Association, who raises money for Lyme Disease education, legislation, research, and patient support? I would very much appreciate it! In order to keep tabs on how much money we raise, please follow these directions to make a donation.

1.  Go to NatCapLyme.org's donation page.
2.  Click on Fundraising Event in the tab section.
3.  In the Select Event for Fundraising dropdown menu choose the bottom one...Arts By the Bay Gallery Ticked Off Lyme Disease Awareness Event.
4.  Fill out the rest of the form and submit!

Thanks so much for any help you could give. This really is a great organization. I attend the support meetings of my local chapter and they are champions of getting the word out in Harford County and beyond.


xo

Cathedral of the Incarnation- Altered Photography by Tracey Grumbach

Cathedral of the Incarnation- Baltimore, MD

Why do I speak out about something so personal and private to me as a chronic illness? Because of amazing people like the following, who reach out to me on an almost daily basis telling me to keep working, keep talking, keep reaching out because it makes a difference in people's lives.

Emails, messages, and posts from others, such as the following, keep me motivated to continue this work (Names are modified to initials for privacy)-

"The whole experience of the event for us was what K likes to call an "Agreement". The both of us have many parallels with your story - your journey. We are are inspired by your work and your insights. "Hauntingly Beautiful" is what K called your pieces, and so we see your experience inside each one. I heard someone once say when going through their most challenging times, they prayed their experiences could be used as a tool for others - that their story would be of service to others. It seems this is (at least) part of your path, so thank you for putting so much "out there" as it truly is of service!"

and

"Hello. I am very interested in your presentation about Lyme on May 5. How do I sign up for this? I have chronic Lyme in my family and find it difficult to find help in South Carolina. I would appreciate any help . I also see there is a run for lyme May 7 in Ashburn , VA. We would like to make these and support Lyme treatment. Thank you for all you do."

 and

"Thank you for your courage to come out on Lyme, we are becoming a 'screaming' voice as my husband's story is similar and we are in the fight for his life with a LLMD out of NJ.... it was refreshing to see someone speak out in the Whig."

These people and many more is why I continue on...


May is Lyme Disease Awareness Month...Would you be so kind as to make a small donation to the non-profit organization I am passionate about, NatCapLyme Association, who raises money for Lyme Disease education, legislation, research, and patient support? I would very much appreciate it! In order to keep tabs on how much money we raise, please follow these directions to make a donation.

1.  Go to NatCapLyme.org's donation page.
2.  Click on Fundraising Event in the tab section.
3.  In the Select Event for Fundraising dropdown menu choose the bottom one...Arts By the Bay Gallery Ticked Off Lyme Disease Awareness Event.
4.  Fill out the rest of the form and submit!

Thanks so much for any help you could give. This really is a great organization. I attend the support meetings of my local chapter and they are champions of getting the word out in Harford County and beyond.

Be sure to come out and see me Friday, May 5th from 6PM-9PM at Arts By the Bay Gallery in Havre de Grace for the Ticked Off event. I will be showing my art, speaking about my journey through this disease, and we will also have lots of fun activities!

May is Lyme Disease Awareness Month!

Did you all know that May is Lyme Disease Awareness Month? I am sure there are many of you out there that know but many may not. As a matter of fact, there are some of you that have no idea what Lyme Disease is. And, if you live here in Maryland, that ignorance could be deadly since we live in an endemic area for tick born illnesses. I actually encountered someone this past week who said they had never heard of it. I was shocked. I guess because my daily life revolves around it I assumed everyone who lives here would know at least that the disease existed.

My fervent prayer is that I am able to use my experience, my voice, and my art to reach as many people as possible to help and warn about this disease. It can have far reaching consequences and not only destroy lives but families as well.

Would you be so kind as to make a small donation to the non-profit organization I am passionate about, NatCapLyme Association, who raises money for Lyme Disease education, legislation, research, and patient support? I would very much appreciate it! In order to keep tabs on how much money we raise, please follow these directions to make a donation.

1.  Go to NatCapLyme.org's donation page.
2.  Click on Fundraising Event in the tab section.
3.  In the Select Event for Fundraising dropdown menu choose the bottom one...Arts By the Bay Gallery Ticked Off Lyme Disease Awareness Event.
4.  Fill out the rest of the form and submit!

Thanks so much for any help you could give. Your donation is tax deductible. This really is a great organization. I attend the support meetings of my local chapter and they are champions of getting the word out in Harford County and beyond.

Be sure to come out and see me Friday, May 5th from 6PM-9PM at Arts By the Bay Gallery in Havre de Grace for the Ticked Off event. I will be showing my art, speaking about my journey through this disease, and we will also have lots of fun activities!

I truly hope you will never have this disease yourself or have a family member affected by it. But with the way the numbers are shooting ever higher and the fact that it is the fast growing vector borne infectious disease in the United States, chances are that if you don't already, you will one day have a friend or family member with it. Even the CDC can admit that. Please, wont' you consider a small donation to help?  Thank you!

xo

Through My Illness I Learned Rejection

Not going to lie, I've been having a difficult time lately. Not sure what is going on but I feel like I am starting all over again with symptoms. Every single day is a struggle to get out of bed. I am saving all my energy for homeschooling and getting ready for the Ticked Off-Lyme Disease Awareness Event coming up on May 5th. I have to have all my art in in just a few weeks, so it is taking a lot of my energy every day to mat and frame a few pieces after teaching the kids all day.

I did have my Homeschool Review at the end of last week and I passed with flying colors, so no problems there. I wasn't really worried since I am vigilant at keeping portfolios of the kids' work and making sure to teach all the subjects, but I am glad it is over nonetheless.

On top of adding to the stress, I started my desktop Mac today only to find that after about 10 years it is dead. That is my major art computer as I don't have the proper software on the laptops, so I am just totally sick to my stomach. No producing art for a while until I get a new computer.

I want to wish my husband, Brian, a very happy birthday today. He has been an amazing support to me all these years trying to fight this chronic illness. I am so thankful for that. 

I hope everyone is feeling good and enjoying the spring weather.

Hugs

xo

Dana Point Sunset- by Harford County Artist

Please click for a larger view of this scene

About this image- It is about this time of year when I start yearning for the sea. The salty water, the rhythmic waves, the cycle of water meeting land. The sun rising or setting over the horizon. There is something about returning to the very basic elements, earth, wind, water, and fire. All of those can be absorbed when standing on the shore. This panoramic was taken in California at Dana Point. If anywhere can be close to heaven on earth, this place, with its almost perfect weather, has to be it. One day I will go back and put my feet on this rock again. One day.

Things are moving along with the planning of the May 5th Ticked Off- Lyme Disease Awareness Event. I received over 50 prints yesterday from the art printer. Now starts the selection process of which ones will be hanging and which ones will be matted for the print bin. I was thrilled with how most turned out, however there are a few I'd like to have reprinted with corrections.

In addition to getting the prints in, I also am beginning to get the word out...I contacted WAMD, 970AM, a local radio station broadcasting out of Aberdeen and they have promised to announce some PSAs about the event. They told me they know several people with chronic Lyme and would be happy to help out in any way they can. Also, the event has been added to Harford's Heart calendar of events. I've handed out fliers, posted fliers in local shops and libraries, and am working on local newspapers to advertise as well. Everywhere I turn people are saying they know someone or are someone who are suffering from this terrible disease (we live in an epidemic area). It is shocking and startling that with so many people suffering it seems hardly anyone is talking about it. It's like it has a stigma or shame integrated with it. That is what I am working to remove. Education, legislation, and support, for families who are struggling through this debilitating disease.

I am excited to announce that the organization I am working to collect funds for, NatCapLyme, has added our event to their fundraising list. If you are out of town and won't be able to make the event, please consider make a monetary donation to this amazing organization! My local chapter, Harford Lyme Advocates, will directly benefit from any donations. Everything is helpful! My local group has been a lifeline for me and they have worked tirelessly to bring hope and comfort and Lyme education to our community.  Here are the directions to make sure your donation gets accounted for the May 5th Fundraiser (which will run through the month of May). **All donations are tax deductible!

1.  Visit NatCapLyme's donation page by clicking here.
2.  Under the words MAKE A DONATION click the tab that says FUNDRAISING EVENT.
3.  In the Dropdown Menu, Please scroll to ARTS BY THE BAY GALLERY TICKED OFF LYME DISEASE AWARENESS EVENT.
4.  Complete the form and submit the donation.

Thank you!  At the end of the May I will let you know how much in total we are able to collect.

Have a wonderful Tuesday.

xo

Ticked Off! May 5th Lyme Disease Awareness Event at Arts By the Bay Gallery

After having about a week off from blogging and spending some quality time with my mother, I am slowly getting back into the swing of things! Over the past week the advertising for the upcoming Ticked Off- Lyme Disease Awareness Event at Arts By the Bay Gallery in Havre de Grace has come out! I will be displaying three walls of art, matted prints, and the published articles I have written.  A portion of the proceeds from my art in the month of May will benefit our local chapter of NatCapLyme! In addition, I will be collecting straight donations (you don't have to buy art), both online and in person at the gallery. When the online portion is set up, I will post a link to the donation site. We so desperately need to get out accurate information to the public about this debilitating and dangerous disease! I will be sharing my story and discussing how art has helped me through some of my most difficult times.

I am thrilled to share these fliers with you and personally invite each and every one of you to come out May 5th from 6-9PM! It is going to be lots of fun! It is also First Friday celebration in Havre de Grace the same evening, so after you stop in to the gallery you can take part in all of the other festivities and activities throughout the main street area.

You can check the Upcoming Events tab for the calendar that lists all of events coming up this spring!

Everyone on the east coast...be safe during this blizzard!

xo

The Shape of My Reality- Digital Art by Tracey Grumbach

About this image: My latest obsession is podcasts. I still have lingering issues resulting from my the Chronic Lyme infection I have been dealing with since about 2011, including auditory oversensitivity. As a result, I rarely listen to music, especially anything louder than spa or classical music, in the car anymore because it feels like someone is grating off my skin with a cheese grater, only in my ear. I know, that makes no sense to most people, but that is the only way I can describe it. Anyway, since I rarely listen to music and I live in a rural area at least 30 minutes drive to any civilization (read: stores), I have started to listen to podcasts. Things like Brains On! Science Podcast for Kids (when the kids are in the car), TED Radio Hour, The Way I Heard It with Mike Rowe, REAL Simple Podcasts, The RobCast, and others keep my brain engaged and my perspectives open while driving in my daily life. What does this have to do with this image?  Good question, glad you asked.

So, one of the podcasts I was listening to from TED Radio Hour was all about our five senses and how humans perceive the world. One of the people that the host interviewed is Issac Lidsky (who was on the show Saved By the Bell years ago!), who lost his sight as a young man. One of his quotes that grabbed me was the following:

You see, sight is just one way we shape our reality. We create our own realities in many other ways. Let's take fear as just one example. Your fears distort your reality. Psychologists have a great term for it - awfulizing, right? Fear replaces the unknown with the awful. When I was diagnosed with my blinding disease, I knew blindness was a death sentence for my independence. It was the end of achievement for me. Blindness meant I would live an unremarkable life, small and sad and likely alone. I knew it. This was a fiction borne of my fears, but I believed it. If I had not confronted the reality of my fear, I would have lived it, I am certain of that.

(If interested, here is the transcript of his section of the podcast.) Seriously, how powerful is that statement? SIGHT IS JUST ONE WAY WE SHAPE OUR REALITY. Let that sink in. We are largely, and some would argue completely, in control of our own reality. We shape our reality based on how our brains receive and process information, how our fears shape the truth, how our backgrounds and experiences form unique-to-us connections in our brains.

So, why then, knowing that each of us is so incredibly unique, can we not respect the uniqueness of our fellow man...lately sometimes even those who we called friends or family before the election? What we all feel is REAL TO US. Why do we have to say the way we perceive the world is right and the way you perceive it is wrong? The fact is, none of us sees true reality...it is all just a picture formed in our brains from our senses! Let's all be nice and get along and respect each other' view even if we don't agree with it.

So, this digital collage was born out of these thoughts...that each of us has our own unique human experience here on earth; that each one of us perceives the world slightly (or greatly) different from every other human being on the earth...and yet we are all still so beautiful and loved (if you believe in our Great Creator like I do.)

Have a listen to the full podcast:  It is very engaging:

Let's all try to be just a little bit more tolerant of differing views. There is no need for name calling, putting down, hysteria, and broken friendships because we are different! The End.

Have a beautifully blessed day.

xo