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

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!

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

Solitude on the Pacific- Digital Art by Tracey Grumbach

This image was created using both iPhone Apps, Photoshop PS6, and Painter Essentials 5.

Having a chronic illness is not easy. Not only does it affect me physically, but it affects me mentally. I am not ashamed to say that I can't battle the emotional implications of my chronic Lyme by myself. I need help. I have an amazing therapist that I see who is incredibly supportive and understanding. She has also had Lyme and has been in my shoes. Although she is supportive, she does not allow me to wallow in sorrow or self-pity, not that I am keen to do that anyway. What I also love about her is she believes wholeheartedly in the mind-body-spirit connection and holistic healing. Recently, she recommended a book, Anatomy of the Spirit by Caroline Myss, PH.D., for me to read for homework.

I've just begun the book and already know it is a game changer for me. Funny how you know pretty early when something is going to change your life, and I knew within the first couple of pages that this was one of those things. I highly recommend this book to anyone who believes that our mind/spirit is intimately connected to our health. Myss puts forth the concept (although not a new concept to ancient healing practices) that our biography IS our biology...that our experiences, thoughts, and memories can literally change our DNA to either make us sick, keep us sick, or help us heal. Game changer.

I've always known that mind/spirit can affect your health. It only makes sense, but this is the first time I have considered that our thoughts and experiences actually alter our DNA. I am looking forward to finishing this book and applying the practices to my daily life. I know all the things I need to completely heal from this chronic illness are here...natural medicine, herbs, food, and good mental hygiene-letting go of the past, and moving forward.

If you feel like you are stuck, if you feel like you are always drained of energy, if you feel like you are wallowing in past experiences without being able to move forward, if you feel like you are angry, stressed, and regretful on a daily basis, you must read this book to see for yourself what implications these behaviors have on your health.

Regaining my health is a top priority because all that matters to me is my ability to raise my kids the best I can (my twins have been through a lot in life already and don't need a sick mother), be a good wife, and help others by bringing awareness and a voice to Lyme disease. Nothing else matters. What are you living for?

Read it and let me know what you think.

xo

September Sunday Morning

As September fell away to make room for October, there was a lot going on here at These Nine Acres. Changes are taking place here at the farm. Leaves are beginning to change color and twirl to the ground in the breeze. The last of our pumpkins are turning orange on the vines. The tomato and pepper plants are beginning to slump and offer their last few pieces of fruit. The barn cat's, the horse's, and the dog's coats are beginning to thicken. Our black walnut trees are heavy with thick green nuts falling to the ground. The squirrels are digging and burying food like crazy. All signs that my favorite season is finally here after an unbearably hot summer.

Changes have been going on with me as well. As I mentioned in my birthday post, I am back in full blown treatment for Lyme and co-infections. The good news is that I seem to be tolerating treatment much better this time around. I am still struggling to feel anywhere close to normal and healthy, but I am not deathly ill like the first time I went through treatment. I am not sure why it is different, but I am not complaining. The last time I ended up in the hospital, so I am fine with it going smoother this time around.

In addition, after my trip to California, I had to have surgery again to battle this jaw infection I have been fighting for over a year. Despite antibiotics and an apicoectomy, the infection never was resolved. No one knows for sure, but I believe Lyme and the co-infections, are partly to blame as it has been researched that these infections will hide out at the base of teeth roots. Then, they can wreak havoc on the bone in your jaw, causing bone loss and teeth loss. So, as a last resort, I had to have surgery to remove two teeth, clean out the infection in my jaw, and replace the missing bone with two bone grafts. So, last Tuesday I had the surgery. It will be a long healing process (I have membranes covering the two bone graft areas along with stitches criss crossing the areas to hold the protective membranes in place. I will have this for three weeks and then the stitches and membranes will be removed. Next, I need to wait to see if the bone grafts take properly. If all goes well, months and months down the line I may be able to replace the teeth I lost with implants, but that remains to be seen. I am still dealing with some pain from surgery and some bleeding. I thought the bleeding was taken care of, but I must have moved around too much this weekend and my heart rate got elevated, causing the surgery sites to begin bleeding again. So...I will be trying to keep still a little longer to allow healing to take place. Rest, rest, rest. To be honest, I am sick of rest. I know everyone wants rest, but me?  I just want to get moving again. And really, with 4 kids, it is very difficult to be still.

So, there is the complete health update as of today. Who knows about tomorrow. I would appreciate prayers that healing would take place in my jaw, that the bone grafts will take properly, and that the surgeon got all the infection out. I am losing weight again due to only being able to eat soft foods and with my already restricted diet, it is tough to find things I can eat. Prayers are for sure welcome.

Thanks to everyone who has reached out and offered help with the kids, offered to bring food, and help with house duties. Brian, my teens, and the twins have all been pitching in to get the heavy lifting/vacuuming/etc. done so I don't have to risk bleeding again.

I hope you all have a wonderful beginning to your autumn. Today is sunny...that is a delicious thing, even if I am just resting.

xo

The Best Thing To Do Is Walk Out of the Barn- Digital Art By Harford County Artist

I love the title of this piece of art because it reminds us that even in stormy, difficult times, it is best to walk out into the open and be vulnerable. Take chances. Live your dreams. Take steps forward when all you want to do is stand still.

Whether it is personal or career related, taking chances has never been easier for me. Somehow when you are faced with difficult health, it really puts other things in your life into perspective. I used to be afraid to ask for what I want and need, but I've learned that if I don't advocate for myself, then no one will. The worst that can happen is someone tells you "no." Big deal. Is not fulfilling your dreams a risk you want to take just because someone may tell you no? For me, it is a clear choice.

So, whether it is for my health or for my career, I have been practicing intention and not letting fear stop me from moving forward. I ask for help when I need it.  I put my art out there to be judged. I accept a no when it comes, but it doesn't freeze me.

In the past week I have contacted two local publications and one national publication to consider publishing my art. Also, I have committed to entering a juried art contest on the local level. Nothing may come of any of this, but if I didn't try and stick my head and heart out there, then NOTHING would come of it for sure. Because when you do nothing, nothing comes to you in return. But, what if everything came of this? What if all three publications said yes! What if I won the contest? Yes, what if.

So, what are you waiting for? What dreams do you have that you can take a baby step toward today? No is not a barrier...it is just a detour sign. Don't be afraid of it, just take a different route. Get busy, people. Take action toward your goals.

xo

Track 1 Train 2311- Digital Art By Baltimore Artist

This digital art was inspired by a visit to Manhattan College this summer. My oldest daughter spent a week there at a high school leadership intensive for students interested in the areas of Digital Media and Film. While my my husband and I were waiting to collect her things to bring her home, I took a small walk around the outside of the campus. This is the result.

Mark your calendars for November 19, 2016! I am proud to announce Craig "Jake" Jachens, a local wildlife photographer, and I will be hosting a Havre de Grace Photo Walk and Intro to Composition Workshop from 8:30AM-12:00PM. We will be going over a few basic composition suggestions to better your photography and then leading a walk around the beautiful Havre de Grace area helping and guiding you along the way to get the best shots you can get! The advertising isn't out yet, but mark your calendars now! As more information is available, I will be pass it along.

Hope everyone had a fantastic Labor Day. I am dealing with some relapsing health issues right now, so I am taking it nice and easy trying to baby myself back into feeling well. If you are a praying type, please whisper a few words for my increased health. I would greatly appreciate it.  Love to all...

xo

Industrial Storm Rising- Digital Art by Tracey Grumbach

Industrial Storm Rising

This art was created from a photo taken while traveling up 95 North on my way to New York City this summer. This image was created to portray my thoughts and feelings about the condition of the environment in our country (adding pesticides to the environment that kill our pollinators, spraying our food with glyphosate, chem trails from airplanes, cloud seeding...the list goes on) and also on a more personal level, how those with chronic illness have to live their lives wondering if today will be a stormy day or a good day. It makes it almost impossible to make plans in stone and requires one to live his/her life by "playing it by ear." I hope you've enjoyed this look into Industrial Storm Rising...and hope you noticed I did NOT add birds to this one. On purpose, of course ;)

Have a wonderful holiday weekend and I will catch you on the other side.

xo