Was That You Passing Me By?- Baltimore Digital Artist

About this image- Back in 2010 I was attempting to do Project 365 where I would take, edit, and post a picture every day for an entire year. I believe I made it through August and then just completely failed, lol. One of the first images I did for this was to take three separate self portraits and then compile them into one image with three different images of me facing in different directions. The exercise was meant to push my boundaries with learning to work with layers in Photoshop.  While going back through the images, one in particular grabbed my attention and I completely altered it to create this digital self portrait. It was inspired, as the title might give away, by reading Never Broken by Jewel.

Today, since the image is of me, I thought I would give a health update for those who follow along with my CLD (Chronic Lyme Disease) journey. If you have been reading my blog for awhile you would know that I was reinfected with another tick bite this past summer and was in treatment again. Well, I am happy to say that I am on my last week of antibiotics! I have been through almost 6 months of treatment again (cycling and pulsing different antibiotics) and I can see an end in sight. Of course, I will be continuing to take suppliments to help my immune system along and continue with my health-conscious eating habits and lifestyle to help my mind/body/soul stay as healthy as possible. But, I am thrilled to be off antibiotics again at the end of the week. I have a love/hate relationship with them and I will not be sad to see those pills gone.

In addition, yesterday, I went to the oral surgeon for a checkup on the jaw infection surgery I had back in September. I am ecstatic to report the bone graft took beautifully and the extraction sites where all the infection was is healing perfectly. The surgeon even said my gums look "amazing." I have the green light to go ahead with the next step of the process which is to have implants placed in the jaw bone so I eventually can have teeth again on that side of my mouth. This procedure will take place in mid-February and then three months after that I will hopefully be able to have teeth placed in the implant bases!

I have some pretty cool news coming to the blog tomorrow, so be sure to check it out! Have a wonderful Thursday and since it doesn't seem like the sun wants to come out on its own, be sure to make some of your own sunshine today.

xo

There Are Joys That Long To Be Ours

Digital Art by Tracey Grumbach of Nine Acres Designs, LLC

There are joys that long to be ours. 

God sends ten thousands truths, 

which come about us like birds seeking inlet;

but we are shut up to them, 

and so they bring us nothing,

but sit and sing awhile upon the roof,

and then fly away.

-Henry Ward Beecher

God is good. This week I went back to one of my doctor's and had a repeat VCS test. The VCS test is a neurological test (although it seems like a vision test) that identifies the potential of biotoxins in the body (produced by mold, Lyme, and co-infections). For the first time, two rows of the test came back normal! Different rows on the test help determine different things and the two rows that improved to normal were indicative that the current treatment I am on for my re-exposure this summer is working! I also increased my score (although still not normal) in two other rows as well. The area I still need the most work, according to this test, is my vascular system. I am still not getting all the blood and oxygen I need to the brain or other parts of my body such as my hands and feet (which I believe why my hands and feet are constantly freezing!) But, this is the first time I have EVER done this well on this test--the doctor and I are thrilled! My husband was with me in the exam room and we all high fived and whooped and hollered that I did so well. It is such a relief after all this time fighting Lyme, co-infections, and then mold that I am getting some positive progress.

In addition to that, there is guarded good news for my cousins' kids who were in a terrible car accident about 10 days ago. My cousin's son has been opening his eyes briefly now for two days. He is still very critical, as is his sister who is still unconscious, but it was a bright light in a long and difficult journey this far. Thank you to everyone for your prayers. They do work. God hears you and He is working miracles!

A bit about this digital art piece...I was sitting at a stop light on the way home from the doctor yesterday when I spotted these three birds on the roof of building. I grabbed my phone and took the shot. Then, later, I added textures, the tree, and the sun. Then, I digitally painted it a bit for this final result. Here is the original, nasty, horrible photo that was hastily taken out of my truck window and then I turned it into the above. Hope you enjoyed this rare before/after!

I hope everyone has a wonderful weekend. Be safe and be kind to each other.

xo

Slowly Sinking, Wasting

But lately her face seems

Slowly sinking, wasting

Crumbling like pastries

And they scream

The worst things in life come free to us.

"The A Team"

Ed Sheeran

I've been out of blogging and art for a while, as I am sure you have noticed. Everyone is so kind to contact me in the various ways, checking on me. All is fairly well...there was no particular reason for my absence other than I just haven't been feeling it lately. I haven't felt like writing or doing art in the past month or so, so I didn't. I gave myself permission to take a break. I refuse to put pressure on myself for blogging or creating art, it just doesn't work that way, so I decided that I would write when I good and well felt like it. Anyway, here is an update of recent happenings...

I've been exploring self portraits lately and I am really drawn to this one for some reason. I guess because it visually represents how I still feel some days when I am at my worst. Lately though, it seems as if I've been having a few more good days than I was (YAY!) and my blood work reflects that. My inflammation levels have dropped 4,000 points but they still remain 3x what they should be. My most recent cognitive test also indicates slightly reduced inflammation and biotoxin levels, but there still was no improvement in my oxygen levels. So, that is where we are concentrating at the moment...getting more oxygen to my brain. A new supplement was added to aid in this task, so hopefully I will be able to see the difference soon. Air hunger, exhaustion, brain fog, and word seeking seem to be hanging on tight although my pain levels have been reduced somewhat. The symptoms match what my labs and cognitive tests are showing, so at least that means I am still in tune with my body and interpreting its signals correctly.

About a month ago I wiped out in the parking lot of a local school. I was calling over my shoulder to my kiddos when I stepped off the curb and onto a rock that proceeded to roll under my foot, causing me to lose my balance. I was able to catch myself with my knees and palms, saving my face from smashing into the ground, but unfortunately, I sprained my left wrist (the ligaments were hyperextended and stretched) and cut up my palm pretty badly. The parking lot was full of debris...you know the corner of every parking lot that collects all the washed out junk...pebbles, glass, leaves, etc.?  Yep, that was the corner where I fell, so the various debris littering the ground wound up in the soft skin of the palm of my left hand. I cleaned it out with hydrogen peroxide, running water, soap, and doused it in antibacterial cream.  I even did epsom salt soaks. However, a month later, I am still dealing with weakness, pain, and a large lump on the pinky side of my palm. The doctor believes there is still debris inside my palm trapped in when the cuts healed over. So, Friday I will be seeing a hand specialist to see what needs to be done. Not what I was hoping for...more medical issues to deal with, but hopefully this will be as easy as numbing my palm, cutting open the wound, and cleaning out whatever is in there.  We'll see. I am desperately praying that surgery is not needed.

In good news, I was honored this week when I was personally invited to attend an upcoming session of the Harford County Council. On May 3, the Council will be passing a proclamation stating that May is Lyme Disease Awareness Month and I was asked, as one of the many Lyme advocates and patients in the area, to attend. If you recall, I had a solo art show back in October and I donated a percentage of the proceeds to fund education, legislation, and advocacy for Lyme sufferers. So, the organization I donated to personally reached out and asked me to be there. I wouldn't miss it for the world. In another post, I will update everyone on all the recent good work this organization has been able to achieve since my show.  :)

I hope everyone is holding on tight during this spring roller coaster weather. It has been interesting to say the least, with 30 degree temperature changes in 24 hours. May you all be blessed this beautiful time of year and I hope to be back posting soon.  xo

P.S.  I will be working at Arts By the Bay Gallery in Havre de Grace this evening from 3PM-7PM...stop in to see my work and we can chat.  

A Chronic Invalid

A chronic invalid has but one thought about his identity: He doesn't want to be a sick man. 

The rest of the discussion seems frivolous to him- an immense privilege of the healthy.

Still, I'm a novelist, and so I pursue it.

Nancy Horan- Under the Wide and Starry Sky

A digital self portrait created from inspiration by the above quote.

Many of you have been messaging me and asking me how my latest doctor appointment went. To be honest, I haven't really wanted to talk about it, so I have been unusually quiet. It just gets so tiresome constantly talking about being sick and why I am sick and why I am not getting better. But, I also know a lot of you follow my journey because you have your own journey to walk and it makes us all feel less alone if we do talk about it, so here you go...

So, because this latest appointment with a doctor who specializes in biotoxins, was very confusing and overwhelming, I am not sure I can explain it all. Basically, I have told you before that I have a genetic mutation that slows down my body's ability to rid itself of toxins, which then complicates recovery for chronic illness patients. Well, after further, more detailed testing, it turns out that I have what's called a 4-3-53 multi-susceptible genotype that doesn't recognize ANY biotoxins in the body...so it actually isn't that my body rids them slower, it is that my body doesn't rid them at all. In addition, the doctor believes I am still being exposed to biotoxin causing elements such as an active Lyme infection or mold because despite being on a drug that should bind to the toxins in my body and flush my system of them, I am not getting better. So, that must mean I am being re-exposed to the toxin causing elements over and over.

We are in the process of having our house tested for mold and I am hoping to get the results by the end of the week. If that test is negative then chances are, by process of elimination, the biotoxins would probably be coming from an active Lyme infection.

Because I have so many toxins floating around freely in my body, my hypothalamus, a section of our brain that controls just about everything, has taken a terrible hit. (By the way, according to the doctor, these toxins can travel to all parts of the body, wreaking havoc and I have already failed a neurotransmitter test showing that neurons in my brain are not firing correctly.) Not one hormone that the hypothalamus produces to control the body's functions came back at normal levels. Not one. That in and of itself has it's own waterfall of complications, one of which is my body is producing WAY too many TGF-B1 proteins (highest level should be 2,382 and mine were 10,220). This means that my own immune system is exhausting me as it takes a lot of energy for your body to produce this much. Also, it means that with that many immune proteins in my body, I present very similarly to an autoimmune patient because they can attack my good, normal cells as if they are intruders (thus explaining why I was at one time incorrectly diagnosed with an autoimmune disorder.) AND, it means that with that many proteins floating around in my bloodstream it can cause "clutter" and slow down and nudge out other important "stuff" that should be in my blood.

And, if that wasn't enough, I have an active and current EBV infection (the virus that causes mononucleosis).

All of these issues have caused me to revert back to a "nurture, rest, and rehabilitate" frame of mind and through discussions with my doctor and my family we decided that I needed to stop Homeschool Co-op and real estate photography for the time being. I am still homeschooling as long as I am able but that is my only major commitment right now.

To get a much more precise and educated description of some of what I am dealing with, you can read this blog post by a much more eloquent writer.

To see the same diagram showing the biotoxin pathway that my doctor used to explain all of this to me, click here. Note that every single three-letter substance (VIP, MSH, AVP, etc.) the diagram shows, not one of mine came back normal levels.

And if you could care less, I don't blame you.

No more talk about illness after today for a while...so...I will see you back here tomorrow with another new digital art piece.

One Way

Along the access road at Red Rock Canyon near Las Vegas, Nevada

Lately it seems as if my fight against Lyme and co-infections is going one way...the wrong way. It started about three months ago when all of the sudden my high of feeling the best I felt in years did a brisk turn for the worse. Since then I have been heading downhill, regaining many of the debilitating symptoms that plagued me early in my diagnosis.  No one but my closest friends and family really knew this as I don't usually talk about it publicly. I plaster a happy face on and try the best I can to live as close to a normal life as possible while behind closed doors I cry and struggle to dress myself, wash my own hair, or drive due to the level of pain I deal with on a daily basis.

Then came the trip to Vegas. I knew I wasn't feeling my best, and against my better judgement, I really pushed myself and ended up in the hotel room bed, sick for the last two days I was there. I was completely incapacitated and almost couldn't make the flight back to Baltimore. Not the smartest move ever.

In the two weeks I've been back I've seen my doctor yet again and have again changed up my treatment plan. Our options are getting thin, kind of like the Raven's depth chart (had to throw in a bit of football humor in there) because I have not responded to many of the treatments and I am allergic to many antibiotics. We've almost run the gamut of choices as far as treatment options goes. So, hopefully this combination of herbals, supplements, and medications will be up to the task of making me better. 

Nearing Red Rock Canyon during our tour in these three wheeled scooters

In the meantime, I've had some genetic testing done and the results were depressing. It turns out my treatment is even more complicated because I have a homogeneous (double mutation...one from my father and one from my mother) MTHFR A1298C gene mutation which basically means (from what I understand so far) that my body can only get rid of toxins at an efficiency rate of 7%-10% of a person who has no gene mutations. Toxins include the dead Lyme and co-infection bacteria, heavy metal exposures, pesticide exposure, pollutant exposure, etc. Since I can not efficiently rid of these things from my body, it continues to build up in my system and make me sicker and sicker. It can also increase levels of inflammation in the body, and decrease mineral absorption, both of which is NOT helpful in my recovery. There is more scientific mumbo jumbo to it that is over my head right now, but so far that is what I am understanding.  So....this mutation could very well be another roadblock to my full recovery. If you are fascinated by this, feel free to read more here. The good news is my doctor is aware and on-board with researching what this means to better my treatment. He is smart and caring and knows exactly what I am going through which is more than I can say for every doctor I had seen for the two and a half years prior to getting diagnosed.

That is not the only gene where I have a double mutation, I found out to my dismay, but I have no idea yet what the implications are for those specific genes. Now I am worried that I passed down the mutations to my children and wonder what the health implications may be for them in the future.

And to kick me while I am down, I received a letter from my insurance company stating that they will no longer cover the ONE prescription drug I take simply because I take it in a much lower dosage than the "normal" dosage and therefore order it from a compounding pharmacy. I only take ONE pharmaceutical medication (the rest I take are herbals or supplements) and they refuse to cover it. Unbelieveable.  Then what good is all of the thousands of dollars my husband pays into our coverage?  They pay for NOTHING related to my Lyme treatment.  Not.  One.  Red.  Hot.  Cent.

So, the bottom line is I have not been around as much as I'd like to.  Exhaustion, pain, and a downright pissy mood has kept me isolated and hiding for much of the past week.

I will take this opportunity to thank everyone who called, texted, emailed, visited, messaged, or wrote on my private Facebook wall checking in on me.  Your concern, your encouragement, and your love are very much appreciated.  And while I couldn't possibly personally respond to so many of you individually, I hope you know that my heart swells with your prayers and love and you are heard and appreciated beyond measure. Some days I can't even summons a voice for fear of breaking down into a hysterical sob so I just don't talk at all (Elizabeth!).  Just know even if I don't call or respond, it is not out of lack of friendship, it is a lack of ability to form a voice through the tears.

I won't promise updates at this point...I just don't know when I will feel myself again, so I will post when I have energy for it.  In the meantime, I am sending my love and well wishes to all of you!  Hoping fall is being kind to you and I hope to be back up and running again soon.  xo

June 2015 Lyme Update

I recently had my check-up with my doctor about my Lyme and co-infection progress.  It was a great visit as he was very happy with my progress since last visit. All of my symptoms of Bartonella have subsided for now (pain in the soles of my feet, anxiety, headaches, shortness of breath, etc.) and I feel the best I have in two years.  The only symptoms I am dealing with right now is continued joint pain (mostly in my shoulders right now), some back pain, and some minor exhaustion (although much better than it has been). The back pain is also a symptom of my herniated disk in L5S1, so I am babying that to try to keep it from getting any worse. Standing on my feet all day teaching (homeschool) is not helpful, so I have to be careful. The good news is I am moving in the right direction! This time last year I pretty much remained indoors all summer and was very sick. I was unable to travel and couldn't really do much on my own. World of difference from one year ago.

We decided to switch up two of my anti-microbial herbal medications to two others so that we can pulse those, attacking the bacteria from different angles. Hopefully I will be on the new medication for about two months, switch back for two months and then switch back again. The research I have read indicates that pulsing either antibiotics or anti-microbial herbals is helpful in beating Lyme. So, that is the current plan.

My doctor ordered new blood work to see exactly where I am with my adrenals, liver function, blood counts, and immune system function. I am excited to get this completed in about 6 weeks and get the results at my new appointment.  I am hoping my results will give us medical evidence that I am improving (besides me just feeling better.)  I prefer the numbers to support what I am feeling, lol. I haven't had blood work completed in about 7 months, so I am hoping we see a difference.

I continue on my gluten free/dairy free/sugar free/caffeine free whole-foods diet and my weight is continuing to remain stable. There are days I still struggle with this, especially when I am traveling, but after almost a year it has become second nature. I still crave a piece of real pizza and a cappuccino every now and again, though!

I probably won't do a monthly update from now on since I am seeing my doctor once every two months. There isn't much to tell in between other than how I feel daily (which is not necessary!) so, whenever I get an update from my doctor, I will update here.

Since I have started this journey of healing, I have been contacted by so many people asking about my situation with Lyme and co-infections because they or someone they know is suffering. While I would rather not have Lyme, Bartonella, Ehrlichea, and C. Pneumonia, I am glad that I can help others who find themselves in the same situation I am in. If I have learned anything about this process, I am happy to pass it on and help others along the way, so if you know of anyone who thinks they may have Lyme and need some direction (I don't give medical advice but can give resources to those seeking information...and a sympathetic ear to those who are suffering), please feel free to pass along my blog and have them contact me through the contact button.

Have a safe and wonderful 4th of July weekend! Happy Birthday, America!

March Lyme Update

Plateau-  That is about it for this month.  I haven't really backslid, which I am thankful for, but I am still not where I want to be.  I feel like the progress toward health has just kind of halted.  In my gut I feel as if the culprit right now is Bartonella.  I am still having strong symptoms of anxiety, rage, sole pain, headaches, etc.  Because I can't take the two antibiotics used to treat this intracellular parasites, I am using a herbal regimen and it is slow going.  My LLMD continues to switch up and add herbals to find the best treatment for me.

I continue on the anti-inflammatory diet of gluten free, dairy free, sugar free, alcohol free and caffeine free.  I find it is easier and easier as the months pass because I am tapped into more resources for this type of diet, and I know instinctually what I can have and what I can't.  My weight remains stable at 132 lbs.  I have never worn size 4 in my life, and now that is all I can wear without a belt.  I am ok with being this size...it makes getting around easier especially when my body is fatigued anyway, it is less weight to pull around, literally.

I am looking forward to the spring, as I am so tired of freezing constantly.  I am always cold.  The warm weather helps with the aches, it helps with my mood, and of course it helps for me to be more mobile to get outside and walk.  Sorry for the late update, just a lot has been going on in my personal and professional life, so that, of course, comes first.