The thrill is gone...

Yup... Soooo over driving ...

Thankfully made it into Colorado Springs tonight and bypassed all the storms in the Midwest... We literally missed a few tornadoes by a couple of hours... Feeling thankful for all the traveling mercies... But so ready for this to be over.... Struggling physically pretty bad today ...

Tomorrow will be our longest travel day yet,  with 11 hours and 40 minutes of drive time,  not including stops- but the day after that will only be 5 1/2 hours....

Here are some pics from today- crappy cause of the bug splattered window etc lol 

Swim time :) 

Day 2

Today we left OH around 6 am ... We traveled through Indiana, Illinois, through Missouri, and on into Kansas... We have stopped over for the night in Junction city... Got some swimming and hot tubbing in to relax ... Kids are now in bed and I'm about to head there myself but wanted to update ...

I am Feeling super blessed because all of the hotels are booked out totally for 100 miles ... There's some kind of country fest and military stuff going on,  with deployments etc.... It was so God that we got this room ... I just happened to call ahead of time to make sure that they had a room available,  which we had planned not to do, just in case we wanted to go further than anticipated if we felt like it... But something told me we needed to stay in this area, and to call ahead and sure enough there was one cancellation,  literally called five minutes before I did...

We hit no traffic again, no bad weather, and despite a few grouchy mood the kids and the dog has been amazing... I've probably been more uptight than anyone... Lol ... But really I just want to get to California...

Here is a photo bomb of the day ...as much as I could get anyway - in between dealing with kids and dogs and bathroom breaks and snacks,  switching movies over and of course being the navigator..

This is how far we have gone since yesterday morning :) about half way there!!! 

Random pics -

630 miles...

Today was the first day of driving on our adventure to move to California. We woke up at 2 AM , did the last minute touches, and hit the road by 4:30 AM ...we did about 600 miles  of driving.(there was like 5 bathroom stops lol ) And traveled through  three different states... we stopped in Springfield Ohio for the night... Did some swimming to get that blood flow going - trying to loosen up after spending that much time in a car ... Hoping to do 9+  Hours of driving tomorrow and reach Kansas City KS... Then stay over there a night ...

We are wiped out from today, but are feeling pretty good about our time line etc... Here are a few snap shots of today... Didn't get too many , honestly there isn't much to see that looks any different than NY in PA or OH. Lol  

This is what we drove today :) 

 

Every mile, hour moment we spend heading west is one inch closer to our destination! :)

One of the most exciting and EXHAUSTING trips ever ... 

Last day...

Last day here in NY ... I'm pretty much lost for words ...

We leave tomorrow at o dark thirty ...

Crunch time!

SO much to do, SO little time!

Ill start off by updating anyone who was wondering about the Gastro appt on the 17th- Turns out, its not so simple to just book an appointment properly. The secretary scheduled it wrong...And made my appointment for a east greenbush office, thinking they were in clifton park- They had NO times available to reschedule me before we leave for CA...I was pretty frustrated. I made an appt with my newer primary yesterday and talked it over with her, to see about some meds for the trip. She won't give me anything without a proper diagnosis, (some meds can skew future testing)  and I can't get one of those until I see a specialist in CA, which will be weeks away...I'm struggling tremendously in the physical department, taking it moment by moment...OK, now that is out of the way...

We have 5 items left in this house to be sold/picked up...We have literally cleaned out the house and sold all our furniture, belongings etc. We have all our memories, pictures, clothes etc, and necessities, packed in some rubbermaid bins and ready to be loaded into the 5X8 trailer we will be pulling behind us on our drive...Its pretty freeing to get rid of your "things"...After all, hearse's don't come with luggage racks! LOL

The driving route:


So, I have rerouted this trip about 5 times...LOL...But we finally settled on this path...

We will start out, heading to Buffalo  on I90.- We plan to stop over in mansfield OH ( around about) for a night- Then head onto I- 71 where we head down to ST louis. we might push past St louis and stay somewhere on the Kansas boarder...Then we take I-70 over to Colorado Springs to stop over and stay for a night...Then we make the trek from There, down I-25, to meet up with I-40 and then down into Phoenix AZ area- We will stay a night there, and Then finally, take I-10 into California!

Here is a link to a google maps route with our drive time and stops etc-
https://goo.gl/maps/qWBJf

We Chose a few hotels to stay at as a guide for when we might want to stop, but will be playing it by ear, as to when and where we really stay (with the exception of CO, and AZ, we plan to meet up with a family/friends in those locations). Obviously the more we drive in a day, the more miles we get out of the way. and less amount of overnight stops, which equals less money spent, BUT we wont be irresponsible about it. If it gets to be "too much" then we stop, and take our time...

Today, I am prepping the last few things to be sold etc, doing laundry, and going over lists for food and what not...Things are so busy, I almost dont have time to get sentimental, but every now and again, when things quiet down, and I stare at the blank walls, stacked boxes and empty rooms, and am still, I cant help but tear up, and think about this season of our lives coming to a close...

I Cannot wait to post pics of the trip, and keep you all in the loop while we ride out this great adventure...because, it WILL be quite the adventure!! :)

The Power of Empathy

Cant wait to get to the shore....

I have heard this song so many times...Its been kind of my anthem...







I feel like, right now, I am stuck in the middle of the ocean, on a tiny raft with a slowly leaking hole...Meanwhile, there is every kind of storm known to the world swirling around me...NO, not just some rain, and waves and lightning or thunder...But MASSIVE storm, after storm, after storm, after STORM, that keeps battering me...Over and over...I keep hanging on to the vision in my heart of that "safe shore" ...I cannot wait to get there, lay in the warm sand and BREATHE without swallowing salty water and tears....But, For now, I cling to my leaky raft for dear life, while I search for that light house to give me a beam of light to follow out of this mess...Out of the darkness...Out of the Storms that have engulfed my life...

updates on my health- (Long)

My last post about the urgent care DR etc, was kind of the catalyst for the next few updates- I am smooshing a few posts from my other blog into this one, to get the info out there,so if this is scattered, that is why...

Because my previous primary had been brushing me off for so long, its been like working double time to get stuff done before we trip to CA-

SO first things first- Appt with the new primary DR was ammmaaaazzzing!!! She was everything I have been looking for in a DR and then some...Too bad I am leaving in less than 2 weeks  from here, But she will advocate for me from afar if need be and I already have a new patient primary appt set in CA with a family medicine internist. 

So we ( the primary in NY) went over family history and some of the test results they did in Urgent care last week...She then drew even more blood...

The plan for now: I will see a gastro specialist ASAP (been having random vomiting about 3 to 4 times a week now, for the last 6 months, which, whatever is causing that, could have caused the inflamed lymph in my abdominal wall) The earliest sppt I could get, which was a miracle anyway, was June 17trh....Then, once in cali, I nee to see a Rheumatologist (My White blood cells are still elevated for no reason, and lymph swelling randomly, and bone pain). Then, A Neuro, to rule out MS (I have random tingling and numbness, and double vision etc that comes an goes, they wanted me to have a MRI for that a year ago, but my deductible was 10 grand, and there was NO way I could afford that- I also, admittedly hoped if I ignored it, things would get better). And, finally the OBGYN to do the biopsy for the thing in my uterus (went friday for that, update below)...Whew...I think, at the end of this, I will have seen every specialist in modern medicine there is, and hopefully, we have some answers for everything....

Friday (6/6/14)I went to to see the OBGYN about the mass in my uterus that was found a couple weeks ago at the urgent care visit and was mentioned above-
I really don't feel like going into all the nitty gritty details, like how every pregnant and newborn that could have been in the office, was there...So Ill keep this short

The OBGYN said the mass/growth is a combo of endo and Adenomyosis, that has considerably embedded in between the posterior uterine muscle/wall. It does not "look" cancerous in nature, but there is NO way to biopsy it due to the location, size etc, and a Hysterectomy is suggested for the future....If it grows at all or change by next can, it won't be a "recommendation" ...OUCH..What a hit...NOt what I expected to hear...

Obviously I dont have to do this,  right NOW, but soon..... Once we get set up with DR's out there, I need a re scan of the area and a second opinion. (The OBGYN appt yesterday was already the 3rd opinion at this point if you count the ER doc's). Of course, it does NOT take a rocket scientist to figure out that a Hysterectomy would be the utter worst thing for me right now , emotionally speaking, having lost SO much, so many babies, the chance to just choose to have more children like most of the world..soooo much has been lost.....Not to mention, the issues that can arise with prolapse after taking out that MUCH of your insides...I do NOT want my bladder falling into my vagina! Not now, not ever....

my OBGYN did say, the mass is the LEAST of my issues, and they should be biopsying the lymphs that randomly swell with no rhyme or reason for the last 6 + months, and figuring out the source of the Bone pain and elevated WBC's etc...:::sigh::: every DR I see wants to point a finger at another DR and say "they should be doing this or that"...Meanwhile I am stuck in between, and believe me when I say, I am NOT new to being my own advocate, but when you are dealing with THIS MANY different specialists and DR's...OMG!!!!!! Brain is fried!!

While updating this blog on draft yesterday, with the above info, I get a call back from my primary I saw last wed here in NY- and some of the blood work is back- the celiac test will be back in a couple more days, but, white blood cells are still elevated for no reason (they can't understand right now anyway) and now, for the first time ever, my ANA came back positive...(here is a link about ANA) 

I have been tested for ANA many times, specifically after our 19 week loss, but most recently in Feb last year with a reproductive DR (braverman) after a loss, and even this last fall when they were trying to find the source of my passing out issues - and then many times in the past after other losses etc- It was always neg before- even though we know I have some auto immune issues already (Hashimoto's) the tests have never come up positive outside of the tests braverman has done- This time, it was not, it came back  positive... I did not ask for the numbers or the pattern, because one, It freaked me out the DR called me personally, and I honestly I am burnt out on googling everything...I just want this nightmare to be over with my health....I want to MOVE to CALI, and start a new chapter...Can I some how get a new body too?? LOL...

So that is about it for this week and my health. we will know more once I get established with the many specialists in Cali. It will probably be late this fall before I even get an official diagnosis....
 Thats it for now.

Divine appointments...

OK, so, I have only told maybe 2 people up until this very moment, but, Monday, we got the call that the buyers on the house backed out due to an unforeseen issue with our septic leach field that was most likely damaged as a result of the dynamite they used across the road when blowing up the ground to put in the bridge back 3+ years ago...We have had NO issues, so it was a surprise for sure...We got the Call Monday morning...It was a HUGE blow...We start questioning if we should even leave, what to do about everything etc....SO many things in limbo again! Combine that with my emotional state dealing with a upcoming Biopsy, etc, I was kind of a mess....No, I WAS a mess....

SO, house was officially back on market...Tuesday, we get a request for showing...I almost declined because I have been so tired ( had been heading down to some prayer meetings a few times this week that went till near midnight) and with 4 kids , getting a house show ready is not an easy task...BUT, I accepted the appt, and just said "what will be will be"...

Showing was set for today at 2:15- I misread and thought it was 2:45, and was NOT ready for them to be here...lol...They asked a few question about the property, and I just laid it all out there, told them about everything ( you have to disclose it in papers/contracts anyway) and just told them our situation...I got a little emotional when I mentioned starting back at square one  etc...They finished the walk through, and at the end, I was about to turn back to walk inside, and the BUYER stopped me and asked if he could lay hands and pray me/our situation...I was first of all, taken by surprise , since real estate is so cut throat and sterile most of the time and we have had SO many bad showings, buyers agent issues etc...But I was like "Heck yes!!!!!" so we prayed right there in my front yard before they left...Meanwhile the buyer agent was looking all confused!...I could do nothing but cry and just say "thank you God"....Not only were the prayers SO needed, it was so unexpected and divine, that it just moved me, encouraged me and totally produced in me a expectancy and excitement...NO matter HOW this turns out for us with this house, GOD is right in the middle of it...This person and his family may or may not buy this home, but today's showing was a divine appointment, that I am sure of... and I am still shaking and half crying ( from joy) because of the whole ordeal!  

I want to take a minute and pray for the Man who prayed for me...Blessings, abundantly and MORE boldness.....May we ALL have the courage to bring Jesus into every aspect of our lives, and not stop seeking for ways to pray for and bless other people...

It was so simple in the grand scheme of things, But changed my entire day, and I have a feeling, we wont be in limbo very long, weather they buy the house, or someone else, God is taking care of things, I just need to be STILL and let God be God...

A glimpse...

Of where we will be living....This is in the area of the San Bernardino national forest, also known as Crestline, Lake arrowhead, Running Springs- Big bear Lake area-
 Here are some random snap shots of the area-

Here also is some video of the terrain, and my fave OFF ROADING!!!!!!!!!!!! I  cant wait!!!!!!!

here is a vid from the city, up the mountain....:)

Follow up on testing with EP

I had my follow up appointment today to go over all the testing I had with the Cardio/EP dr I went and saw last month. It was of course, a LONG morning, between driving down in commuter traffic, to waiting an unusual amount of time for the DR to come in...But alas...He arrived, with answers.

First off. The echo was normal. so YAY about that!

The event/loop monitor showed no arrhythmias...Also super good!

The tilt table test, although it did not show the "gold standard" , it did show some interesting results in regards to the hypersensitivity from the iso. Basically, the results from that and my history, I was given the diagnosis of neurocardiogenic syncope, also known as  Neurally mediated syncope.  Which is a dysfunction of the autonomic system. It is a sub set of POTS, which he thought might be the final diagnosis. Either way, they are groups into a syndrome called, dysautonomia.

Treatment:

Increase salt and fluid intake to reduce triggers. And, I started on a beta blocker called, Toprol XL. Starting at 25 mgs....

So, all in all. It went great. I learned I am NOT crazy, hopefully, I can start feeling a bit better, with the addition of medications. Hopefully not forever...

Limbo land...

It seems we have found ourselves stuck in a strange and uncomfortable land...Limbo Land...What was once solid, concrete plans, are now thrown to the wind...And we wait...We are trying to be patient.....If you didn't already know, patience is NOT one of my best character traits, lol.

Ok, I will back up a little bit...And take you through this little journey from the beginning...

In September 2013, I had some health issues, that landed me in emergency surgery, which resulted in some unforeseen complications (they accidently cut open my colon, yes those things DO happen..lol)..It left us a bit shaken, and we decided to stop playing around and living in this mundane cycle of just going through the motions, and start talking about our next 5 and 10 year goals etc. We had to make some hard decisions about where we were going to be headed once we left NY (we have been set on leaving NY for years, just had not been 100% certain on the location in which we wanted to go to after leaving) And downsizing the house when we buy again,, and what possibly part time work for me would look like...It was all exhausting, thinking about hypotheticals...We agreed though, that these things needed to happen sooner rather than later, and we gave ourselves till feb 2014, to figure out what we were going to do.... But, we also agreed, we needed to take a little "break" from the real life stuff too and have some FUN together!... 

After such a crazy last couple of years, with numerous pregnancy losses, church craziness, ending of relationships with people you thought you trusted, and then, just plain stupid decisions made by us, and subsequently, reaping natural consequences from ALL those choices...It just plain sucked... But  can tell you...MANY, many lessons were learned...It is funny how you learn more in the hard times, than in the good...Anyway...I digress.

After much discussion, we decided to bite the bullet and take a trip to see my parents out in California. It had been nearly 7 years since we had been out...We needed a vacation...I NEEDED to see my MOM, especially after that surgery scare.....It was a win, win...And it JUST so happened, some unforeseen money come our way, and I scored the plane tix for less than half the regular price!!!...We were over the moon! 

The 12 days we spent in California, back in Oct/Nov were absolutely soul soothing, heart healing, and magical... We made so many amazing memories...

It was about halfway through our trip, when I realized my husband was seeming a bit intense..No doubt, the conversations we had before vacation were weighing on him , now that he had no work to take away from that focus...I knew something was turning in his head, I just did not know what.  The next day or so after probing a little ( ok, a LOT)...It finally came out...He had began to consider moving out to CA...I was a bit shocked...I did notice how much more affordable the housing was in the area we liked,  and even taxes were cheaper...But most of all...My parents were out there....

Many of you remember me saying.. I will NEVER, ever, ever move back to Cali, ever!"...Well, its kind of this running joke me and God have...I say "never", and he says, "Oh REALLY!?...we will see about that...lol" ( Yes God LOL's at me, we have that kind of relationship... heheheh)......You see,  stuff happens...Perspectives are shifted by experiences, good and bad...People change. I have changed. 

When we had discussed moving in the past, ( and we have planned on leaving NY for years) moving to a warmer, sunnier area was KEY...We had thought NC, SC or TX possibly. But none of those places had family close by. Jared's mom is here in NY and mine is in CA...Staying in NY was OUT of the question, for so many reasons. So, I began to see the logic behind his thinking...Especially since we were seeing it was affordable, and doable. We decided to kind of bench the idea till we were back home and had our real life glasses on, and not the vacation ones that made everything seem possible ..LOL...But both of us kept thinking about it...I could tell each time our eyes would meet, and we both had a certain smile...

We got back home, and  we talked some more, and decided to see what a transfer with his company would look like. Things were getting more serious, much more than we anticipated, especially so soon! After a couple meetings with a few of his boss's, we had gotten word, the end of February/beg. March would be our target date to move! We were shocked, and sooo excited! We rushed to get the house ready to sell, and packed about 80 percent of our things, downsized, etc and even through the holidays, kept focused. At the start of Jan 2014, we listed. 

End of jan 2014...We get news from the corporate chain at Jared's work, that cuts are being made, and "restructuring" is happening, so the transfer may be pushed out till april but no worries...Ok, No big deal...

Beginning of Feb..."It could be 6 to 8 months, maybe longer"...Basically NO one knows what is going on...And TONS of people are being told they cannot transfer for 18 months or more, no matter what the location is...So it isn't just our transfer that is being affected. 

One sliver of hope is, he reached out to a past mentor who works with the company still, and is now at headquarters. He is going to see if any of his contacts can assist in getting this transfer moved through sooner, and possibly with an even better position than we initially thought! There are NO guarantees, but we are praying for some favor here... 

In other news...The House selling...UGH...All I will say is, the next house we buy, I will DIE in, before I sell again...It is just utter ridiculousness! Dealing with the buyers flaky, unprofessional agents is grating in my nerves...BUT, my house has never been this clean, consistently...LOL! We have had a couple of "almost offers" but it was between us and another house, and the other houses won. But in hindsight, had we accepted an offer and pushed to close sooner, rather than later, we might be homeless, waiting for this darn transfer! So, I am not going to get discouraged about that one bit. 

I just have a pet peeve about people who have no courtesy for others when scheduling showings, and either coming uber late and displacing us for 3 hours with 4 kids and a dog in 10 below weather, just to say "meh, I don't like the yard", to just plain not showing up, and after cleaning for 3 hours I was less than thrilled....But, I guess it is all apart of the "experience"...One I hope to NOT relive again! 

Adventures in my crazzzzyyy life....

So, about a month ago, I met with a cardiologist and electrophysiologist, from Albany Medical center, about some episodes I have been having for a while now. Come to think of it, I have always had a variation of these kids if issues since I was a child, but was misdiagnosed for years and years. Anyway, The episodes are similar to fainting, but with some pre syncope issues, like flushing, cold sweats, cold extremities, nausea, headaches, dizziness, then eventually my heart rate goes funky and so does my blood pressure, and BAM, down I go...No real rhyme or reason to it, and nothing I can do to stop it...It is NOT from "getting up too fast", or anything of that sort. The plan was to see the cardio/EP doctor, and let him do some tests and make a determination about the causes and get an official diagnosis.

When I had my initial consult, he mentioned, based on my history and symptoms, that it seems as though there is a problem in my autonomic nervous system, which is causing the reflexes that control my heart rate and blood pressure to NOT work properly. WHY that is happening, and what the exact causes are,  are unknown right now, the tests he wanted to do would help us see a bit better. So I scheduled my tests a few weeks later, and last tuesday, I went in...

..It was rather eventful!

I will back up though, and start from the beginning...

I went back down to Albany, and checked in at my cardiologists office for the testing that needed to be done.  First test on the list, Echocardiogram.

I went in, got on the LOVELY gown ( shown above)

Then , a wonderful tech came in and probed my chest for 25 minutes...No word back on those results yet...I will get that info in Feb 25th.

As soon as that was done, I got dressed, and waited for the Tilt table test ( aka- TTT)...

I was slightly nervous before, but nothing major. I had done a little reading, and even watched a few youtube vids from the mayo clinic on TTT's, so I was aware of what they were going to do, and knowing about it, helped to reduce any anxiety. They called me back, and had me take off most of my top wear, and put back on another gown, then waited, while they went over the test, risks, and what they were trying to find etc...It all seemed easy enough...

Then, they started to hook me up to all the machines...Holy crap, was it a LOT of wires!! They would not let me fiddle with my phone or take pics..Boo...lol...But in hindsight, I am glad...

So, the first part of the test, you start out laying flat. They get a baseline heart rate and blood pressure. Then they raise me,  to a mostly standing position, while strapped down to a table, also, while continuing to monitor. This goes on for 45 minutes. If I were to have passed out in the first 45 minutes, they would have stopped the test, and had the results needed. But, I stayed awake. Which is not uncommon. Many people dont pass out on the TTT.  I had many issues with fluctuations, but none severe enough to cause me to pass out in that first 45 mins.

After the 45 mins, they lay you back down, for about 5 minutes. They then preped an IV line to give fluids, and so that they could administer a medication called Isoproterenol intravenously. It acts as a artificial adrenaline, to speed up the heart rate. Then they stand you up again for 30 mins, unless you pass out before then....

Well...Things did not go as planned when they gave me the meds through the IV...I ended up having a bad reaction...Once they stood me back up, and started the meds, I was immediately unable to breathe, move, talk etc...It was as if I was being drowned!  My heart rate SHOT up, super fast, my muscles started shaking and I started to have hot flashes and cold sweats...The monitors started going off, they stopped the meds, and started me on oxygen ASAP, but nothing helped...THEY started kind of freaking out, which freaked ME out...Then They laid me flat, to try and stabilize my heart rate and blood pressure. I did not even get to complete the second half of the test. They were all freaked out by the event, and made the DR come in and see me before I could go home, because it was soooo crazy! None of them had ever seen anyone react to the meds that way before. I was slightly traumatized...It was a bit much for me...My body is still so tired, even now from it all, even almost a week later!

Anyway, I ended up, after all was said and done, with a 30 day event/loop monitor, that will continuously monitor my heart for any abnormalities over the course of the next 25- 30 days...Here is a peek at my new "best friend" for the next few weeks...

This little gadget will go with me EVERYWHERE, 24/7 except  in shower..Fun fun...

NOT!

This monitor is a pain in the BUTT...I am allergic to the sticky pads, and the wires irritate me...I will be sooooo glad when this is over, and we have some answers, hopefully!