The countdown begins

Day 1:  Bear with me as I lose my mind. This may help the time pass a bit. I started the day with my son’s field trip. That helped put me in a better mood as he had a blast on his first field trip…the only dagger to the heart was after the all of the official activities I sat with his buddy’s (the little boy donned a Red Sox hat next to Ryan’s Pats hat) mom . She turns to me:  “is ryan your only one”. *sigh* “yup my one and only”…

Then it was off to the MFM to pick up the kit. Where it was broke to me that it probably will be more like two weeks before I get the results. I could of sworn I read on the site 7-10 Calender days. They said they’re calling either way with results… The lab down the street was empty and the done quickly…tick tock tick tock

I started feeling crummy today. Could be from eating my weight in organic candy corn and chocolate the day before but honestly my biggest Lyme aggrivator has been stress. It sets a flare in motion like nothing else.

I used my home Doppler:  perfect heart rate at ~160. I’ve been able to find her heart rate most times since about 9 weeks and it’s always been spot on. How can she not be ok? Doesn’t make sense. Both trisomy 13 and 18 usually have heart issues. 

While we especially remember the whole month, yesterday we lit candles for the international wave of light for infant loss and miscarriage awareness day. We remembers our four babies and prayed we wouldn’t add a fifth…

The nights have been the worst,kind of like deployments when you’re sad and scared thinking the worst. Probably didn’t help that I spent atleast an hour on Google comparing our baby’s ultrasound with that babies with confirmed cases of the trisomies. I’ve thought from the beginning the head looked a little small, the facial features a little tiny. I had tried to reassure myself that maybe since we think it’s a girl that is why. But who knows, maybe not. I looked at Ryan’s baby book (that may have set off some water works) and looked at his ultrasound pics….have I mentioned I’m losing my mind?! I’ve stayed up until 1/2 am watching HGTV but for some reason the on demand wasn’t working. Doesn’t direct tv know that it’s crisis time over here? 

Starting day 2 of waiting buying some boots. Hey we have seasons now and they were on super sale. Totally justifiable. Time to start our day soon…tick tock tick tock

A rainbow or another storm….

After our last loss I remembering thinking: could I do this? Could I try again and go through the pain of another pregnancy loss…after a lot of soul searching and the resounding answer was no, absolutely not could I do this again. Physically my Lyme would get worse, I’d feel terrible, m 

 entally it would take me to darker places than I’ve been before and I just didn’t think I’d be able to get out of it…

And then during many months of Lyme treatment I started to reflect on the intense lonliness I faced. I thought of months and months of not having an adult conversation. I thought of prior to my diagnoses my son being invited to birthday parties and then after he was left out. I thought of the general lonliness I’ve faced so many times as a military wife…

I had decided depite my dreams of having two or three children that Ry was enough for me, that my sweet, funny caring boy was enough. He’s been the answer to so many prayers and just a joy….but then thinking of that despair and lonliness o faced it started to hit me that as a military child I never wanted my child to feel that low. I wanted him to have a forever friend. I wanted him to never feel how I’ve felt so many times. My siblings are great and even though I don’t see them as much as I’d like I know they have my back. Heck during part of my worst days last year my brother flew down to help out with ryan last year….I wanted to have that for my son. I could chance going through hell one more time and the anxiety that pregnancy would bring if only I could do this one thing for my child..:if only. 

My first Lyme doc, a naturopath that did the testing (through igenix) and diagnosis had told us we had to wait a year and then we could think about trying again. I felt so good all summer, not remission good but on the path. Seeing that I was 35 so it was now or never really… That thought was all it took. Shortly after moving to Virginia I found out that I was pregnant again.

Cue the fears, the anxiety ridden trips to the bathroom, the dread of doctors appointment. My first scan was early 5/6 weeks and they couldn’t measure the HR. We could see it though. I thought that was it. I thought that was the end there. Then because of my high risk status (advanced maternal age, Lyme disease, recurrent pregnancy loss and a preemie) I was sent out for two more ultrasounds. They looked great. Baby was super active. I breathed a sigh of relief, thanked God…but I was not excited.

I thought maybe after that we would share..nah let’s wait until we clear first trimester. I had an appointment with maternal fetal medicine. We had the NT, Scan which I had with Ry. They look for neck measurements to look for things like Downs Syndrome, the blood test that goes with tests not only for downs (trisomy 21) but trisomy 13 and 18 as well. So the scan looked good ..should we tell then? No..let’s try and wait to 18 week scan. I’m started to show but let’s not jinx this…

Then as i tried to combat my upset stomach I chewed on a ginger chew a couple weeks ago..and broke a tooth. It’s been hard to find a holistic dentist. Extra important with a high risk pregnancy to make sure they don’t force a risky route canal and they can handle extractions safely. Stress. I had already had a Lyme doc appt scheduled for this month, MFM , 2 Ob appts, a cardiologist (MFM wants to check heart function with pregnancy and Lyme) not to mention all my son’s school functions and a trip to MA for a family wedding. 

The ball on the stress continued to roll at the end of the wedding when my back pain I had been experiencing worsened and I began spotting and cramping. I called the OB on call and he told me pelvic rest, and to go to ER if it gets worse, he fears a miscarriage…

At 5:30 that morning the back pain was unbearable, expecting the worse I headed to ER in the pitch black. After blood work and a scan the baby looked good. Super active…we had to tell people because we left our son sleeping at my aunts. And at that point what the heck, I guess we have to tell people now. I reluctantly accepted congratulations and well wishes. As hard as they were to hear I though maybe just maybe I could feed off people’s excitement and positivity since I have none of my own, detached. 

On the long ride back to where we live I got a call from my MFM’s office saying I need to come in for a consult. Fuck. So that means my first Tri screening came back for trisomy 21, 18, or 13. I could barely sleep last night and made it through preschool drop off , on to the cardio, preschool pick up, quick trip to feed the boy at Starbucks and then to face the music at MFM.

My stomach lurched as we pulled into the driveway (I had ry). I sit down as she tells me that it’s positive for downs , ok Id love my baby no matter what and do whatver for her…and then I see it say negative next to 21. “Oh I meant 13/18”. Those abnormalities essentially make babies incompatible with life. You will lose these babies in pregnancy, shortly after birth or within the first year of life. There is no way to know right now which trisomy is showing positve by my blood with this test. It screens for chances and mine is high after testing… Higher than prior. Next I can do a panorama test which will tell me which is positive alone with any other abnormalities and high risk/low risk …. The only way to know for certain is an amniocentesis. This carries a risk, albeit small for miscarriage. I can decide to do this as early as next week or when I get results from my next screening. Ten days from this Thursday. 

There will be no cute announcements with Ry finally in a big brother shirt, there will be no pink or blue balloons or cupcakes…please don’t don’t congratulate me. Don’t point out my belly. Just pray, please pray that I can’t get through this, whatver the case may be.

Why is this so easy for some people. As I sit here writing by the river, I wonder why…alone. 

An overdue Happenings 

Summer’s have been rough for sometime:  between losing pregnancies, being so far away from family that you miss out on the normal summer festivities or just the illnesses…but this summer was different. As I sat in a small historic church in Vermont listening to former pro snowboarder (who suffered a traumatic brain injury) talk about children in the same boat who lost their friends upon injury…were isolated, I realized when I felt so much better this summer. It was because I had a community and thus I was living with a disease and not just suffering from one. Back in the desert I don’t think I had an adult conversation (in person) from nearly my diagnosis to when we moved . I had thought being a part of a couple groups that maybe I’d have a visitor with a tabloid mag or invite for coffee or a walk but that never happened. Granted I was so grateful for texts and social media interactions but just not the same As a naturally shy person adding a disease on top of that I simply did not have the energy to step outside my comfort zone and thus I had all the time in the world to just dwell on my illness.

As I mentioned in previous posts, I directly went to stay with my aunt and cousin in Plymouth MA ( small waterfront/pilgrims/historic/happening town). My day to day life there consisted of walks to the waterfront with family and friends, walks to the juice bar or health food store)I really think that hugely upped my energy), play dates and seashell hunts with my little guy.  

Some of the highlights:  with my cousin taking Ry on a pirate cruise, a wedding shower for one of my best friends, play dates with my friend and her son I hadn’t met before, watching my unt run Her first half, Red Sox Game with my aunt, grad party, cookouts, shopping trips, 5ks (the color run and July 4th) and Wanderlust in Vermont (yoga festival -more on that later).  


As far as Treatment. I had upped my pekana detox drops, as well as starting to treat a probable babesia co-infection with abab. Yes I was busy this summer but I did take breaks, had to cancel some plans but that was ok because I also had company and more opportunities if I had to miss out. I’ve reverently had to deal with some other health stuff that I’ve had to alter treatment so im not doing as well but we’ll get things figured out. 

Our new town: aside from our yard which is a Lymies worst nightmare (overgrown yard landlord is dragging heels doing a thing about) and some other household issues they haven’t fixed yet we love this town. There’s so much to do and many many health food options. One of the health food stores even has Kombucha on tap.  

 We’ve gone to a minor league baseball game, went to a dog swim, there’s many yoga options…a whole new world.

What else:  we did travel back to California for a wedding of good friends) and then to MA to go to another wedding. Although the travel did take its toll I’m so grateful I was able to attend and I think a lot of that was due to my summer of healing.  

Up next:  I’ve been hunting local LLMD’s which I think I’ll be able to get an appointment by end of this month or beginning of the next. I did have a phone consult with my San Diego doc so that will hold me over until then.

Wanderlust and the rest:  In July I won a four day pass to a yoga and music festival in Vermont. I went alone, met another yogi online hitched a ride and set off not knowing what to expect but knowing I needed this. One of my favorite classes was Amy Ippoliti’s Happy Hips black light class. She’s an amazing teacher that infuses humor with her spot on teaching. I learned there that I can do more than I think. I took some amazing mediations classes, did a SUP yoga class, an Ariel class, listened and danced to some great music like MC yogi, did a hike with raw hot cacao drink and healed. I had spent so much time with the word:  fight that it was exhausting. Yes I need to fight but I need to heal and yoga and the community that surrounds it is so healing. This dawned on me during my “one word” bracelet making class. My new word is HEAL.

So spoonies my summer ramblings:  I want to share what I really learned :  find a community (and people surround those of us suffering from illnesses) and live with disease instead of just suffering from until that day you can heal from it. Yes we fight and beat the Lyme bastard buggies but do what you can to heal your body and soul.  


Color Run Fun! A race recap

A little over a week ago I ran The Color Run Shine with my team Gronk’s Pet Unicorns. The run was located at Gilette stadium .. See the association there 😆? I had done a color me rad a couple years ago but this one was the first from this company. I was pretty excited they incorporated a glitter time zone. Everyone needs a little sparkle in their lives.

First unfortunately: the negative. Packet pickup was a mess. They had offered two days prior but both at Gillette in Foxboro and since we had a busy weekend we couldn’t make the 45 minute drive up there. Apparently the color run thought more people would take advantage of the other days because we waited at least an hour in line. There was music playing and enough of us so it wasn’t too bad we could switch out to go to the bathroom, shop or gets snacks. When we finally got up there to get our bib no one had us sign a waiver and no one checked our IDs even. Probably because they just wanted to get people through the line but still concerning. There were no tags on the bib to denote we had people picking up shirts either and unfortunately I witnessed people taking advantage of that. 

We eventually met up with the rest of our team:  my friend Erin and her family.  This is most of us pictured below sans my cousin, not sure where she went off to. 

The run. They had a DJ type guy at the starting zone pumping us up with music and throwing out swag. There were two different waves: just running or run/walk/cartwheel. We signed up for the latter. We took off an and split into two groups: my cousin, aunt and I and my friend and her family. Even from the start the course (around Gillete stadium/Patriot place/practice fields) was so wide that we had plenty of room to run. My cousin runs track and my aunt who is training for her first half were tough to keep up with with on top of the crazy heat+humidity (Lymies hate heat) but I tried. The color zones were plentiful and the volunteers dolled it out in condiment type bottles as opposed to just packets like in color me rad so we could way better colored. Also they had tarps on the side to roll in. This is where the Color run wins major points over color me rad. Also the “shine zone” that came somewhere around mile 2 was more of a cool sheen than glitter, pretty neat.  



There weren’t a lot of photographers on course but I did see them at the finish shoot which was filled with music and cheers. Another 5k fun run complete:  take that Lyme.

Brady love:  there were lots of support for our awesome (and innocent I may add) quarter back including myself who had #freebrady in face paint on my arms.  

    That’s our medal we got at the finish…

  • Post run party. My cousin wanted try for some swag so we went over to the stage area. They had tons of free stuff  thrown out including packets of color, music going, a very enthusiastic MC (I don’t know how they have so much pep) .  This was post run prior to party…  And after…..


Overall a very good time. These runs are very relaxed and perfect for your first 5k, a good time with family/friends or if you’re dealing with a chronic illness like me and want to get out for run/walk and not have the pressure of having it be a timed run you need to push through. 

Grade A-. With 10,000 runners (the MC at the start quoted this) they needed more volunteers at the packet/t-shirt pick up. It got a little chaotic. Other than that it was great:   tons of color, enthusiastic staff, cool medal, music and plenty of space to run if you wanted to. 


Get our there and give it a try😎.
Next up:  I’ll have a happenings post of my first full month in Massachusetts and not in the desert hurray!

Neverland family 5k

Since today is a cold and dreary day what a great time to sit down and finally write my race recap. Tinkerbell was my first half marathon back in 2013 so I have a special fondness for this weekend. Even though I couldn’t run the half this year I wanted to be apart of this somehow. The week leading up to the run was a rough one with a Lyme or co-infection flare leaving me with a high temp despite resting all week in preparation. Thanks to people’s prayers I started to feel better a short day before.
I had a few things in mind for the expo. Our first time to go on a Thursday and it was busy yet not insane. I’ve been doing more walking then running since beginning treatment so waking in my zero drop Altras wouldn’t work so I really wanted a pair of the new Tinkerbell new balance shoes. They’re gorgeous but a little small. They fit fine with my crazy compression socks though.

2015/05/img_8871.jpg . My cousin and aunt picked up some sparkle athletic arm sleeves on my recommendation because I love mine for the cool upcoming forecast. Next up was some KT tape for myself and a friend. I got the lime green sparkle. My group of my mom, aunt, cousin, son and hubby was a bit much for the expo so we left to meet up with a friend for dinner in Downtown Disney.
Race morning
It was chilly, low 50’s and steady rain. My poor family from MA was not expecting this from California. The alarm went off bright and early at about 3am. I had only managed about 1 1/2 of sleep since it was really stuffy in the room due to the heat pumping and I was restless. Thankfully our ART shuttle came and we headed to Disney.
The start
The 5k starts near Main Street in front of Sleeping Beauty’s castle. We had assumed there was a staging area once in the park but when we got there and asked what to do with our bags she said we had to carry them, no bag check. After some pleading she said she’d ask someone else. That someone else also had no idea but thankfully a runner overheard and said it was just outside the park. It has HARD to find, tucked behind some trees on some picnic table. This is my only complaint for the run, that should have been better organized. The thought of holding a big bag through the rain was daunting…
Anyway back to the positive. After the National Anthem which we all sang along with someone playing it on a trumpet I believe (it felt like a dream, dark, no sleep, in fairy wings) the fireworks went off and Tink flew by! This was the best start I can remember. Very Disney magical.



There was also a little skit with Wendy and the constable telling us about Peter’s missing shadow. Whenever we saw this we would crow.

The run
The plan was I was to run with my speedy-runs track every day-cousin and my mom and aunt (who was running the 10k the next day) would go together and mostly walk. This was a fun run and by the time we had to re-enter the park for the bag debacle we were towards the back so it was slow going for awhile. We did get into our grove and found a small spot on the left to sneak through and run. It narrowed at points and we had to walk but that was fine by me because my body needed the rest. I luckily had the smarts to get us all ponchos and that really kept me warm. It stopped raining about half way though so I took the poncho off…it would downpour again toward the end…lol oh well. As for characters photo ops: there were a lot for such a short race: Hook and Smee, Wendy and Peter, the Lost Boys, and a tons of pirates.


2015/05/img_8831.jpg Lots of park time on course: starting in Disneyland, through some behind the scenes areas where we would see Peter’s shadow, through California Adventure. We would see Bugs Land, and the finish was just up the hill near Paradise Pier. That also allowed for some cool photo ops by Mickey’s Ferris wheel and California Screamin’



We met up with my mom and aunt shortly afterward. They ran more expected. Go Mom on her first 5k.
Overall grade A. Tons of park time, photo ops, fun course, cheery cast members giving the Mickey hand high 5. The only real draw back was the bag thing. Which luckily we got there early enough to start. I would definitely recommend this for some family fun.
For my chronic health warrior friends
It really amaze me every time how after a race I feel significantly better for at least a week. I I feel exercise, when we can do it is such a help in the healing process. I know sometimes I doubt myself. Take it slow and easy, do what you can, and have faith. All it takes is faith, trust and pixie dust right?


Happenings 5/6

I keep day dreaming of being better cause honestly I thought I was improving…that little check list of symptoms at my Lyme doc looks better but yesterday I woke up with a fever close to 102 and felt like hot poop left out in the desert sun. I had dreams of adding to my family and running a marathon but after yesterday I feel like I’m never getting better, like this is a life sentence. I haven’t left my house in over a week so I wouldn’t catch any bugs because we have a Disney trip coming up and then I was to headed to Boston to visit family. I had pulled off what I thought was adhesive but was it a tick?? Or did I get a mosquito bite? Or is it still a bad relapse? I’m so over this! Maybe it’s time to sell all my belonging and head to Germany???
Doctors I’ve had a lot lately but I’ll try to give a quick summary. I had my EEG (test done to check for seizures). You lay in a bed for 1 1/2 and they check brain waves etc, they flash a light (strobe type thing) in your face last couple minutes and then make you hyperventilate to try and cause a seizure…fun.
I had my neuro follow up. The EEG was normal. The MRI was “essentially normal”. That meaning they found one white lesion. He said because of my migraine history that is normal. But anyone who’s familiar with chronic neuro Lyme also knows that white lesions are found in Lymies’ brains and that’s why many times Lyme is misdiagnosed as MS. So who knows if they had performed this test before they probably would have found more before treatment…
Next up cardio…he starts to tell me my 30 monitor looked “fine” but we could call in a specialist that could insert a needle through my groin into my heart!!? Huh what you just told me I was fine. I asked about the home apnea study. “Who ordered that” he says. Umm you did? *leaves comes back 10 minutes later* “ahh unfortunately you have apnea. Ding ding ding. I thought so. So he then says “I ah guess running ok”. (He cannot get through one Daggone appointment without his diatribe on runnning”.) “but ahh maybe not the knees the back, causal ok, no competitive, only Olympians”. Ahh sigh.
So the plan is for me to get a CPAP.
Next up my Lyme doc. He looks at the sleep apnea study and it appears off: one of the heart rate averages doesn’t add up and one heart rate high appears too high. It still appears I have sleep apnea but it may not be as severe. I think when we move it may be worth seeing a sleep doc. Anyway the plan with him was to keep where I was with Meds for now and then up the plaquinol when I get home to visit the family so I could enjoy my Disney trip without a herx. (Not sure I’ll enjoy it now but…). I could also take a break from Meds while I was at Disney (Lyme is really a full time job with just med taking and organizing alone). I have a phone appointment with him end of June.
The Move We had thought of next move this summer would be back to all our old haunts and loves in North Carolina but then were surprisingly told that wasn’t possible anymore and we could go to either Kansas or California. But at the last minute there was an opportunity for Quantico Virginia. So this summer that’s where I’m headed. Closer to family and I’ve heard there are many docs in the DC area for Lyme.
I’ve had a rough go of it this spring with allergies, many colds and now this…but I managed to do several yoga challenges and fairly regular dog walks. I also did the team sparkle virtual 5k for Rett syndrome. I have been pretty layed up lately.

Good news: I was selected as a crazy compression ambassador. I mentioned in my tips for running/exercising post that compression socks have been so helpful in allowing me some exercise. I have awful leg pain a lot and this helps. This brand is awesome because they are affordable, made in the USA and come in so many fun colors and designs. Check em out

What else
While in San Diego I finally got my tattoo that I booked back in December. Buju tattoo is the name of the shop and the owner was from MA too, how perfect. I mentioned awhile back here the idea of the lotus came from the end of my yoga teacher treating while suffering my first miscarriage my yoga teacher includes something about the lotus in my card.

The idea sprang from there and I wanted to somehow include the birthstones of all my babies. In total now 4 in Heaven and my miracle on Earth. So Brianna designed this: with each color or the flower representing a birthstone…I just love it.

So to close
I’m not sure how my travel plans and trips will plan out with how I’m feeling..I could use some prayers. I got a nice phone call this morning from an old friend that did lift my spirits some. I hope that I improve some in the next couple days. And if you’re suffering I hope you improve too.

Frustration Nation

So I expressed frustration with doctors on the Facebook wall and it’s just getting worse…..

Let’s back up to my cardiologist appointment. (See last happenings as this was some time ago). We decided to go with a patch monitor to see what the tachycardia at night was all about. Weeks passed and nothing…no monitor. I then get an auto message from cardionet (the monitor I had last go round. Huh I think that’s odd, maybe so patches too? After calling my cardio because I have no monitor yet they say yes it’s on the way…and I’m getting a cardio net because they couldn’t get the patch for the desires four week…fine. NO ONE INFORMED ME. And we tried this one already so whatever:..The monitor arrives and shortly I run out of the hypoallergenic electrodes and my skin was being ripped to shreds by the others. The agent informed me that my RX is only for…wait for it…TWO WEEKS and I need to speak with my doctor to change it before the monitor be changed. So they change it..but it’s like what the heck?!
Moving on to the Neuro stuff. I had my MRI about a week and a half ago. No fun, not that I expected it to be but thanks to yogic breathing I survived without any major panicking. But I did pick up a cold. I do my best at doctors appointments to avoid picking up nasties but there’s only so much you can do. As I was signing in the one, yes one person in the waiting room starting coughing as I was signing it. That cold didn’t last too long.
I was going to drop off my hubby to see his friends who were in town that I’ve known for a bit so I was going to stop in to say hello with Ry. He doesn’t do well at this place, kinda bar like so no high chairs etc. I promised ice cream if we just went and and left. That was ok until we returned back to the car…”dadddddy”. So we stayed. In order to stay busy he was playing with the table peanuts. (You can throw them on the floor there). I normally in my germaphobic tendencies would avoid, especially here were even though we were at a table I doubt the were changed. I wasn’t really thinking about it because the boy was busy and happy and frankly it was nice to be out with familiar faces. But I ate the malaria peanuts…shudder…so the boy could throw he shells on the floor. Now I have a nasty nasty cold. Fever, sore throat, chills…bad. A few days later the boy is sick too 👎👎👎
So adding the colds to what was already a herx reaction from upping Meds and the effects of the MRI (some folks use magnet therapy to treat Lyme) so my adverse reaction makes sense….no good.
I called my neuro’s EEG department last week to see if we could move my April 6th appointment to the 8th just because it would be a little more convenient for us and the agent said my appointment was actually April 1….what??? No it’s the 6th I have it written down several times along with the day and time. He’s supposed to call me back. Never does.
Flash forward to last night where I had another night with anxiety/impending doom wash over me at about 10pm . I fall asleep about midnight and wake up with tachycardia and feeling funny. This morning I had the whole my Brain is being stabbed/pressure headache/limbs weak/feel like I’m going to up chuck… So I decide to again call them.
The woman so rude every time I have spoken with her. Acts like I’m trying to schedule a pedicure for my dog or something instead of test to find seizures. So I ask her what’s happening and why it says the 1st and she says oh no “you’re scheduled for the 2nd”. Now what in the Samuel F💨👂k.?! A third date. She won’t admit she effed up. Now she “has to call all 20 people and see if the will switch”. So as of right now I have no EEG .
And guess what? I’m frustrated…and scared. I’m scared of something bad happening to me in my sleep. And I can’t help but think that these doctors/receptionists would be to blame. How hard is it really to just do your job. When I was working full time, part time..whatever I did my job, busted my tail. Where is that sense of work to ethic?! I still think there’s some sleep apnea going on but my home study only worked 1/3 of the days so I’m not too confident when when we get the results of its accuracy.
Don’t get me wrong I still have hope, I still pray, I’m still going to fight, I still see the beauty in each day…I’m just FRUSTRATED 😕


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2015/03/img_7950-4.png (David Dunn)