Thursday, October 23, 2014

Results of PET scan and Marrow biopsy!!!!! (still not out of the woods yet)

Just an update! PET scan and marrow biopsy was good! cancer cannot be ruled out until after the biopsy results from surgery, but it is less likely...which is amazzzinnnggg!...However, we are not close to any answers which means no treatment for what is going on, and I will have to go back to rhum again, and be sent out to a university like UCLA to be evaluated, so they can hopefully figure out why I feel like I am 70 and not 30...





Results of PET scan and Marrow biopsy!!!!! (still not out of the woods yet)

Just an update! PET scan and marrow biopsy was good! cancer cannot be ruled out until after the biopsy results from surgery, but it is less likely...which is amazzzinnnggg!...However, we are not close to any answers which means no treatment for what is going on, and I will have to go back to rhum again, and be sent out to a university like UCLA to be evaluated, so they can hopefully figure out why I feel like I am 70 and not 30...





Thursday, October 16, 2014

I don't want to leave without you...

I found this song today, while listening to this bands album- I am going to see them in concert tonight ( nice venue at a church, so it wont be too "crazy" or chaotic, and they have comfy seats) and wanted to hear some of the songs that they don't feature on the radio...



When I got to this song...Cue the tears...



This song kind of parallels where "we are at" right now...












Wednesday, October 15, 2014

October 15- pregnancy and infant loss awareness day


Today has been an emotionally difficult day...Earlier this morning as I sat going through a PET scan,  due to the possibility of cancer, I couldn't help but Think of all of our angel babies...

My mind was brought back to the last three and a half / four years...well really, back to 9 years ago and my husband and I had our first early miscarriage, then again to six years ago and we lost Hannah Marie, then everything that happened in the years following, mostly the last 3 1/2 four years of consecutive losses...so much heart ache...so much pain...But at the same time still so much joy.....with each life that came just as quickly as they were lost, they brought me joy.....and in the midst of all of that I still had hope...even this time last year I still had so much hope that one day just maybe one day things would work out and we would get one last rainbow baby even if it was five more years down the line when we could afford the IVF and immune meds...

now as I sit here looking back and also looking at the present circumstances we are dealing with, I know that chance for us is over...which is a very difficult thing to except after so much heartbreak...but I cannot change the present circumstances, and all I can do is honor the children I have on earth and the children I have in heaven to the best of my abilities...and hold onto the hope that one day I will have all of them in one place with my arms wrapped tightly around each one...

today I am honoring not only the babies that I have lost but the babies that have been lost all around the world...honoring the hopes and dreams that each of us parents had for each of those precious children...

To all of my fellow Loss momma's, I love you, and I am thinking of you and your precious babies today and holding each one close to my heart ������������������������������




Wednesday, October 1, 2014

Bone marrow biopsy scheduled

I got  a call today...Oct 14th I go in for bone marrow biopsy..... SO nervous!! But honestly more concerned about the open surgical biopsy (no word on date for that yet)..But either way, they are gonna suck....However, they will bring us answers  which is soooo verrryyyyyy needed....

::sigh::: even just the possibility of cancer is exhausting and scary to comprehend...

Tuesday, September 30, 2014

Meg's Vblog Update- #6 - open biopsy soon - more appointments...

Rhum #1 was not so bad...I still don't agree with some of her thinking, (hence seeing a second rhum) but over all, she was compassionate and had much better bedside manor than when I previously saw her in the hospital...Probably because she was pissed at the oncologist when she was at the hospital for not doing the open biopsy then and there like she has suggested...She also told me that should I have further issues before I can get in for the open biopsy, to go to Loma Linda and they can do it there, and she has already spoken to some students there ( she teaches there) and attendee's about my case and they have a little bit of info on my already...Thats kind of cool, but also, kind of sad that I am complex enough to be talked about in lectures...::sigh:::

anyway, just a quick update vid-
Love to all


In honor of all of our angel babies

I got a picture today that I ordered back in July in honor of all of our angel babies...created by Carly Marie at projectheal.com 

Because we have lost soooo many babies  I chose to use something that would represent them all (last name) -

I can't wait to get a big print of this to hang in the house!!


Sunday, September 28, 2014

Rhum appt #1 tomorrow....

 
I have an appt with Rhum #1 ( the one who "swore"  they had no emergency appts open until JANUARY, and the one who gace me a line of crap in the hospital last week- also the one who scoffed at Bravermans note when I showed her whilist admitted to hospital last week when she came in to collaborate with the addmiting team, and also said " you have no auto immune issues" because my ANA was neg on that draw even though it was previously positive and, I have Thyroid antibodies which indicates I have hashimotos and AUTO IMMUNE issue- basically in a nut shell, shes an idiot, and also pregnant and smug...)...Then, Rhum appt #2 with an out of network DR about an hour away on Thursday...

I am no expecting much from tomorrows appt- I think Thursday will be my best bet, but I am going anyhow, so I don't look "non compliant" to my PCP and pother DR's.

Stilllllllll NO call from oncology to schedule my appt to set up other biopsies....THEY were supposed to call Thursday, NO CALL, so I call Friday, NO one gets back to me....I wont even get too far started on this, Or it would be a novel, but the short version is, this guys is such a tool bag!! But my PCP said it would take longer if I switched and it would "look bad" on me, like "doctor shopping". which in all reality I should be able to do whenever I want since, remember, I PAY THEM, not the other way around...But, whatever...I am gonna play their game...And pray I make it through the next couple weeks without having to be admitted to hospital again for the pain and swollen nodes.

Ill update tomorrow after appt, so long as I feel ok, and am not too wiped out physically, and emotionally from the day. I am taking my mom with me (she or my hubss go with me to every appt, since I cannot drive but also to be a witness), so I will have a second set of ears and eyes...

There is a possibility of the Sjogrens disease biopsy tomorrow, not 100% sure, but we will see...

For now, I am off to eat some beef stew my crock pot cooked for me allllll day....It is smelling delish!




Here are a few random pics for fun-















Monday, September 15, 2014

Where is "House" when I need him...

Since my last entry, things have gotten a bit crazy!

It started out with a seizure yesterday, late evening time...I was alone with my kids...

Luckily, I didn't hurt myself falling/passing out, but it was very traumatic for my kiddos since the last few times, I had my husband there and they were in bed...This time, hubbs was working and I was on my way to carry a load of laundry up the stairs...I only made it to the bottom stair before I clonked out...Thank GOD, or it would have been a long hard fall down the stairs!

When I "came to" they were screaming and crying and my oldest was calling 911, which was, BUSY....Yes, the line was busy....So she called my mom, who lives less than a mile away, who came , and she proceeded to call 911, and they out her on hold! NO lie!...Anyway, 3 mins later, my street was lit up with flashing lights and a crew up firefighters and EMT's were in my house...I seemed to be "ok" at that point, just shaken up, but they urged me to go to the hospital...I knew it would be pointless, but I went anyway...Mostly to appease my mother, husband and kids, who were terrified....AN the EMT's who made sure to tell me I would have to sign an AMA of I didn't go....So...Off I went...

My husband and my pastor and his wife (amazing people!) met me there, and we waited for some tests...We actually had some laughs in there... especially at my husbands expense who got the clergy wrist band instead of my pastor! LOL, it really was more funny if you were THERE.....


..I was in rare form (meaning NOT grouchy, and considering my past history with hospitals, that was a miracle!) and the staff was also very nice, surprisingly! BUT, their sandwiches suck! lol....Seriously, nasty....Brought hospital food to a whole new low..


It took all of about 2 hours believe it or not, which is like a record for an ER trip! The DR came back and said " you had a seizure it seems, you have no head trauma, and no abnormalities in blood work, see primary and neuro tomorrow", and I signed some papers and was on my way....

Went home got in bed, and got some much needed rest! Woke up, kids went to school, and my mom and I headed down the mountain to the city for a little time out...More like, she didnt want to leave me home alone...lol...But anyway, while I was down, I made some calls to primary, and Neuro about the hospital visit, and neuro got me in for an appt like 15 mins after the call...I go in and they immediately set me up for a EEG- they JUST happened to have a cancellation, so it was perfect timing so to speak...So in I went and got hooked up to my cool "hat"...



The EEG seemed to be normal, but my blood pressure was crazy! swinging high and low and then dropping even lower, like scary low...Basically I had the neurologist all confused! He basically said, to folow up with primary about BP, and upped my keppra dosage - I was on my way home in a hour or so, and that was that...

I get home, and BP is still wigging out ( even now it is swinging like you wouldnt not believe!) here are a few readings...Its insane....( yes I double checked readings to be sure it wasn't a fluke...and used a different cuff to make sure it was not machine)























Seriously, I feel like junk with all these swings!!...Not to mention recovering from a seizure/fall...ugh...But I am alive!
:)

So, I finally get a chance to lay down this afternoon, and I check my e mail...I got a response from a message I had sent a week or so ago...Actually, I had a few previous responses , but none of them were very helpful so I was kind of surprised to see this one in my inbox....

You see, I wrote to my old reproductive immunologist, in NYC, who, back in feb/march of last year, did a TON of blood work (39 vials at one time) on myself and 6 on my husband to find out the  source of our miscarriages. He is a mastermind and a genius to say the least and gave us answers then about our pregnancy losses, that NO other specialist could give us...Some of you know, it was pretty rare, and also devastating, because the prognosis was not very good for us ever having more children, unless we wanted to spend 30 grand a month on IVF and immune meds...We stopped trying, and let that be that....But we had answers...Anyway, I messaged him and asked if there was anything in those results that could help us figure out what was going on right NOW in my body, not related to pregnancy and miscarriages...The frist few replies were just "go see a rhum" and I explained how I was unable to get into one speedy, because of the state of the system out here...Then he said " have primary test for this and that" to which, my primary insisted he could not do, so that was that....

But today, I had a different response, which I was not expecting...It turns out he asked his research team to go over my labs again, and see what they could find...Mind you, I did NOT pay him for this, he chose to do this...Went over and above to help me...This was his response today....

I had my research department go over your old HLA testing and this was their conclusion. I would show this to your primary or read this to the rheum who is making you wait until January.

Attached is what we reanalyzed for the  previous data for  Megan Priest.  If you recall our discussion on this , we  thought that her symptoms that she recently reported  , were most consistent with systemic sclerosis.  Sure enough, she almost certainly has the DRB1*13:02/DQB1*06:04/DQA1*01:02 haplotype that is associated with systemic sclerosis and myasthenia gravis (can’t be 100% sure of the high res on this but this is highly consistent with the NMDP codes).  She also has the extended 8.1 haplotype which is of course associated with many autoimmune diseases, but systemic sclerosis is one of these.  This gives us more confidence that this may be systemic sclerosis and she needs to get into see that rheum ASAP to have this ruled out as it can be serious if it is developing at a rapid rate which it seems to be.    

Jeffrey Braverman MD FACOG
Medical Director
Braverman Reproductive Immunology

Manhattan
139 E 23st(corner of Lexington Ave)
New York City ,  NY
(second floor)
516 584 8710

Long Island
800 Woodbury Road
Woodbury , NY
Suite G

Phone 516 584 8710

Holy cow! I was astonished, and also scared...I faxed over that info to all of my DR's and The rhum through beaver med group who was going to make me wait till JANUARY is changing their tune and the one in Corona CA, that was going to see me Oct is looking to have me in next week! My primary didn't even bother to call me back...we will see what tomorrow brings! But this is a start and hopefully will light a fire under some butts! I don't think this will bring light to 100% everything I am dealing with, but I am pretty sure it will jump start the process...

While, we never did get another baby from having seen Braverman, (though the answers as to why, and what caused our issues were helpful, it still hurt to walk away with no happy ending) I believe there was a reason we went there, and this may be apart of it...

Other than that, my shoulder HURTS from falling, and I am worn out from the day, so I am going to cut this short and just say thank you to allllllll who are praying! keep it going, I need all I can get! Love and hugs to all out there reading this! And many blessing for those suffering with other chronic conditions...

Also, those of you who are healthy, ( yes even those of you who are pregnant and "miserable" with aches, pains and morning sickness, you ARE  healthy, so stop whining!!) cherish your health, cause man,  it sucks to deal with chronic mysterious health junk...It wears on you hardcore! 

If only there was a REAL life "house" out there....I wouldn't have to go through all of this...

Sunday, September 14, 2014

One year ago, today...My heart broke, yet again...

.
As many of you on this blog know.....For more than 3 years we tried to have another baby, and in those 3 years we suffered many traumatic losses....I never had  "trouble" getting pregnant, just STAYING that way...To date, we have had 13 documented pregnancy losses ranging from 5 weeks to 19 weeks along...Many of those were consecutive losses, in the 3+ year time period I am speaking of, though a few were in between the kids I do have on earth though.We also had many unconfirmed, undocumented early losses ( o stopped counting).....Anyway..At the end of those 3+ years of trying and loss after loss after loss, we finally found out, after seeing a specialists in NYC, what was causing our "issues" carrying to term, and it turned out to be very complex, (allo immune implantation issues,combined with HLA/  KIR matches and HY restricting genes) and VERY difficult to treat without VERY expensive medications not covered by insurance...We decided to stop trying, and go back on birth control, look into adoption...That was May/June of 2013...

August 30th, 2013....I was feeling "off" and much like when I was in early pregnancy in the past, but was more or less just thinking it was the hormonal pills I was taking, but, something told me to "be sure"...Sure enough...My suspicion was confirmed...


 With as many losses as we had, and not being on the correct medication, I knew there was little hope....BUT, I prayed, maybe, just maybe, this would e it...It would be a miracle...

The endless days of blood test after blood test came and went, and after a few days, we were told to expect to miscarry again...Of course, I was devastated

I went from "giving up" and saying "okay,  I am moving on from all of this", to "surprise, even though YOU decided to stop, this is happening, so get ready!" to " maybe God really IS going to do a miracle this time, because I "let go"...  how cool would that be!", BACK to " Hello grief, my friend, we meet , yet again"....

I prepared to miscarry....All while simultaneously praying God would do the impossible...It was such a mix of emotions...Each day, I didn't know what the day would being, a miracle, or another loss...I waited and waited...

And then, Sept 14th 2013 rolled around...I felt searing pain on my right side....I knew something was not right...

Off to urgent care I went, a quick ultrasound and blood test revealed the baby was in my tube, and I was about to rupture inside...I was driven to a bigger hospital via ambulance, where I was met by a friend and my husband...I was already prepped in the blue cap and starting to feel sedated as I kissed my husband and was rolled through the doors to surgery to have my baby taken...In the process they had to take out my right Fallopian tube and also NOT in the plans, had to have a reinforcement done on my bowel,, because the "nicked" me in the surgery by accident...How "fun", right? 

I awoke, feeling like id been hit by a truck, and was emotionally drained, and broken...I still remember the sounds and smells of the hospital, even today...I remember feeling, yet again, like every other loss, a piece of ME was taken away inside, a part of my heart, never to be healed, or given back again...Even today, I feel empty inside from the things we have had to ensure and even still, my heart aches when I see a new baby, or belly....Wishing we could celebrate that in our lives again, or even just be happy for someone else, but instead, it just brings back such painful memories...Feelings of hurt, and abandonment, and I pull out the "why me" card again....Even today...the pain has not gone away....


I drove home, and tried to out on my "brave face" for the kiddos at home, (which are true miracles, and I am soooo so thankful for them, but just like when you lose a parent, having the other one present does NOT make up for the loss of the other, nor does having children already make up for the loss of what could have been, what SHOULD have been) and all the while, I just wanted to go home, scream in my pillow and cry, and cry and cry...WHY God, why would you allow this to happen, if it meant more loss, more hurt, more complications, and almost my death!?? why?....I don't get it!?

I still don't have those answers from Him yet about any of that ... Even though, I  am now  faced with more issues, not related to babies and bellies, but none the less, major health issues, and the feeling of being sooooo BROKEN in my body, I cant help but wonder, what the purpose of all of this is...And WHY? Why sooo much pain, suffering and unending grief, and hurt?

All I can do, is keep looking at what I decided to place on my body (a mere 4 weeks before this took place last year) as a memorial to all our babies gone to soon, and for every hard thing I have endured in my life...

Romans 8:18

Present Suffering and Future Glory

18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

Help me lord to focus on the JOY that will come, when you decide to reveal it, and not my past, present or future circumstances here on this earth, in this season of my life....




Tests, tests, and more tests...Also pics and concert fun...

So, I am not doing a video tonight, I just feel like I can express a bit more in pics than words...

I went yesterday for some of the smaller tests...One included a espohigram (sp?? -- X-ray with barium of chest and esophagus and and tummy) which was less than stellar...I got to drink about 3 different kinds/consistencies of barium, along with a fizzy tablet, and even marshmallows covered in barium...Gross...To add insult to injury, they "made" me take a freaking pregnancy tests before the X ray, even though I am not even close to ovulation and lets face it have zero chance of a successful pregnancy...I know it is necessary, but, still...It made me feel so down and out about the last 3 years...seeing them pul out a pregnancy tests, knowing I WONT ever be be able to celebrate one of those being positive again...even when I get past all of the health issues, thanks to my crazy ass immune system, who thinks its job is to serial kill my implanting embryos...Its insane how one simple test, that is insignificant in comparison to all the others I am having, had such an emotional impact on me...Just simply seeing that OSOM tests o the counter brought me right back to out TTC and loss days, and it stung...a LOT...

This is about how I feel about that whole odeal, after the tears dried up that is...Yes, I cried...a LOT...I just hate what my body has robbed us of, past present and future...

(gotta love the gown right?...lol)

Here are a few pics of the machine and the goodies I got to "taste test"...bleh




After this, I went for more bloodwork, not even sure what they tested, Ive stopped asking, I don't even care anymore...Just get it over with...

Then went for a lung function tests, where I breathe in and out of this machine thingy....  I BARELY passed...Only cause the lady made me redo the tests like 4 times just to get a decent "reading"....I mean, I "passed" (80% function), that's good and all, but I know MY functions are not what they used to be...I have been a singer all my life and when I cant get enough breath to hold a note, I KNOW something aint right...But it is what it is...The lung scope will show better results about what is going on in there than that stupid machine anyway...No pics of the lung test, there was no wait time, and the lady was kind of an ass, and was "training"  and more concerned about her student then my test or care, but whatever...

Then they sent me homw with goodies to bring back a stool sample...Lovely, right?...DEF no pics of that nonesense...I am sure you all agree, its just not needed...LOL

Then, despite being exhausted from the day, and in a good deal of pain, I downed some coffee, and took some hydrocodones, and off I went to see...Tenth Ave north, an amazing christian band, who I have loved ever since they came out! I was invited a few weeks back, before things started to get a bit harder physically, and while I contemplated canceling, I just knew, I NEEDED to go... Here are a few pics, and a video of one of my fave songs!

Before the concert, the sunset was just amazing...
 Then the show began...The pics and vid does not do it any justice, but figured i would share them anyhow, since it was so much fun, and for the first time in a while,I was just filled with JOY...No stress, no worry, just JOY...It was a great feeling!





After the concert, we almost had a detour on the way home, as there was a car fire on the highway going back up the mountain, but we made it!

I got home, watched some of my crappy video footage, and snuggled up with the hubbs (kids were alreasy fast asleep) to watch a show, while Molly cuddled with me (she misses me when I am not home a LOT)....


Today, I had to drive back to the clinic to drop of my "sample" which was a huge fiasco, but I wont even go there, lest I get mad all over again about it...

Then, headed to go get some much needed food for the house...I was BEAT, but made it through today, and have been relaxing the rest of this evening...Just figured I would give a update...I wont have results about the tests for a while, and still don't know when the other tests will be done...As soon as I know, everyone will be updated, so we can pray I don't freak out about being "put under"...Or worry too much about the outcomes...

That is "it" for tonight folks! 

Lots of love-
Meg

Sunday, September 7, 2014

losing the little things..

I got my hair touched up...Got a little color and a cut... :)

Before I go on my emo rant, let me preface by highlighting some good things that have happened the last few days...

I got to have dinner with my family, here at our new house (which I love!)..I crock pot Cooked an amazing chicken, with all the fixings.. The kids are loving school and doing amazing! Had a great day at church today, was so moved by worship, and began to feel small glimpses of his presence again....We sponsoered a beautiful little girl in Nicaragua (gonna do a separate post about that soon!) AND, it rained today, like a soaking downpour, and the sound and smell was just so refreshing! Then the sun came out and shined and glistened on all the clean new leaves...Just totally majestic! I love the nature here!!

Ok so on to the hair rant...

I was feeling so "bleh", and had no motivation to do my hair these days...It needed a boost, like 3 months ago, but I didn't even want to get my hair done...I was dreading going in, knowing the hairdresser would ask why my hair was in such a state...Not because of it not being styled or  uncolored with major roots  for 6+ months, but because I knew she would ask if my hair was always "this thin"...Before, I used to get told I NEEDED to thin it out "just a tad" because it was sooooo thick and unmanageable...Which normally I decline because I loved my thick locks, even if it took longer to style...That is not the case anymore...

Even my kids, (mostly just the older girls) the day before I went in for my cut/color, noticed how THIN my hair was, and gasped in shock, as they watched while I tried to braid it, and do a deep conditioning..My braids were 1/4 of the size they USED to be...As I stared in the mirror that night and grasped my braids in my hand, it started to really hit me...I mean I knew I had lost some...But, With all the business of moving and getting the kids in school, I had not really noticed just how thin it really was...I brushed it off a bit and figured it was just the treatment oil weighing it down. or at least I tried to tell myself that...

The next day, off i went to the salon....

As she began to foil my hair and comb it...I realized, even more , just HOW much hair I have lost over the last year or so, which I don't even know the reason behind...Yet..And yes, even my NEW hairdresser, who I had not been to before, could tell I have portions of hair just gone, like totally gone....She asked if I was on "chemo or radiation" ...I answered with a quick NO, then began to explain  a brief summary of whats been going on....A few sympathetic smiles, and jokes...Then it was back to small talk, as I watched my hair get separated into foiled sections, and transform with color, little by little, my heart sank with every stroke of the comb.....Then, she cut it, and it really hit me, as I could see in the mirror the portions of layers that just seemingly disappeared, even  over the course of the last 3 weeks...She did a great hob though evening everything out...

 I know how stupid this sounds, considering, there are so many people dealing with far worse thing, and people being beheaded across the globe simply for believing in Jesus Christ....But for me, in my little sphere of life, this hit me pretty hard, and has been a hard pill to swallow...whatever it eating away at my body inside, it starting to show itself in too many ways now, and there is noting I can do about it....


Here are some PAST pics of my hair over the last couple years...


2011-

                                                                                                        2012

fall of 2013





 March 2014-
















                                                                          Last week-






























And this week :)













Again, I know losing hair is pretty trivial, but considering I have always had super thick and amazing hair, it is kind of hard to lose it, and not even KNOW why!...With chemo, you know whats happening, why, and know it is doing a job, all be it, a hard one, but there is a end result of hopefully being cancer free...This is just HAPPENING, and there isn't an X amount of time I will have to deal with it, or a end date to look forward to, or a happy ending to hold on to...

All this hair crap just brings up all the emotions surrounding all the other health issues that don't have solid answers either....I know they will come, eventually, but at this point i'm kind of scared...Even if we finally know "WHY", I KNOW there will be no easy fix, because when it comes to auto immune issues (which all the DR's are convinced are the issues, just knowing which disorders to treat) there never is...There are NO cures, just medications that come with even more side effects and long term problems. All I can do now, is just pray for some supernatural divine healing, and some how, hope that things begin to shift and an upswing will come my way health wise, and I can have a little reprieve from all of this...I just want to go one day without feeling like I am a 30 year old trapped in a 70 year old woman's body...BUT, Its losing these little things, that all compile together and start making me feel really bummed out...

Ok I think I have complained enough....First world problems, right?













Thursday, September 4, 2014

Ups and downs...

Today, was a half decent day...I was able to get up, with minimal pain, do my make up and hair and lead a "normal" life for a small portion of time..I was excited to feel half human for a while...


I kept praying it would last all day and into tomorrow  or next week even....

Then, about 2 pm hit....

Back to square one...Pain, fatigue, brain fog, numbness, bone and joint pain, swollen glands all over... And an overtaking ache in my soul, for healing and wholeness....I just want to be healthy again!! I want to live a life like a normal 30 year old woman/mother/wife. 

The DR called (Primary) and wants me to go for some blood work tomorrow to look further into systemic lupus, based on some of the findings from the CT scan,(and my ANA in may, came up for SLE) and blood work oncologist did...I will meet back up with him on the 10th to go over the results. I am not sure why they are doing it now, when they said rhum would have to cover all those tests, and  when the rhum will just want to do it AGAIN anyway.......But whatever. Ill play their game, maybe answers and relief will come sooner out of this...I hope...

All I can do this afternoon, is weep- I am so frustrated and feeling so abandoned, even though I KNOW in my soul I need to trust HIM...BUT.......I dont feel him right now....I sooo want to...I NEED to...This storm has been whirling around me far too long, with increasing intensity...I need to feel his love like I never have before.... So I have been listening to this on repeat...



I hate how this storm has affected me and stolen so much from me and my family...This is my prayer for today, while I meditate on the song above....


Tuesday, September 2, 2014

Grieving and flashbacks

This last few days has been HARD. I'll admit it...Physically, I am struggling a LOT....SOOO  MUCH  pain...It hurts in so many places I cannot even begin to list them, it would take the entire entry...Aside of all that...

I have been faced with so many reminders this week, and flash backs of so many things that send me right back to "ground zero" in grief ...Grief for so many things...Ill touch on a few...

Some of you may not know, in fact a majority of you probably don't know, I had a VERY difficult upbringing..My parents had a less than stellar marriage, which consisted of fighting every day, (dad was verbally abusive) my mom and I leaving every few months to live with family, "daddy" going to counseling to make it better, only to fall back into the same cycle...I hated my life and even prayed they would divorce...Eventually I was  into hardcore drugs at age 13/14 ( not just a little pot either) and was in many abusive relationships with men 6 to 8 years older than me, who had me selling and trafficking drugs.. I  spent a LOT of my teen years in and out of Juvenile detention. Some would say it was due to the "broken home" that had just split up my world, some would say I was just young and stupid. But the truth is, I was seeking to destroy my life by any means necessary...I felt I had NO value. And many people reinforced that notion over and over again, so I self medicated with dangerous drugs, and eventually began taking so much, I was  hoping I just wouldn't wake up one day...Which leads me into this next part...

I'm grieving my past- Pre marriage and kids- I made some stupid decisions, did drugs, hung out with bad people etc... But I also had some very traumatic and unfortunate circumstances (rape by authority figure aka a police officer, in an interrogation room at 14  years old - right after being gang raped by a group of popular wrestlers in high school- even my oldest daughter from a previous relationship is a product of domestic rape- long story-)   That happened to leave me ridden with PTSD.( I never knew that's what it was until a few years ago)  Maybe some of it was my own doing, but some of it clearly was not.....No person in authority has the right to do what happened to me at such a young age regardless of how screwed up I was, it just wasn't right...

I am thankful, some how, by the grace of God, I was able to snap out of this part in my life, and have been sober and clean for 13 years, saved by Jesus Christ (even though I curse and make mistakes, I believe in him as my savior and am TRYING to gain back some faith here)...I am thankful for the man (my husband now) that God brought me now, to show me what TRUE love is...And help heal the wounds that so many men inflicted upon me over and over...

Today, I passed by "the room" where one of those instances took place, with said "authority figure" when I had to attend a meeting in this building that is no longer used for what it once was...Needless to say, I broke down in tears and anxiety, as I quickly passed by and peered down the dark hall......I could hardly compose myself...I normally have PTSD issues while in a dream state, never fully awake. But not today...Even my husband had never seen me this way before, and I couldn't even speak the words to tell him what was going on...Tears just streamed down my face...I eventually gained control over my emotions etc, and tried to brush it off, but all day I have been in "self reflect" mode trying to just refocus....Instead, I am more unfocused...

Which turned into grieving for my health, and where I once "was" and where I am now, physically...Its almost too hard to believe I am so limited, and dealing with so much in my body....It really puts a damper on staying positive for the future because I do not know what tomorrow will bring...The dreams I had 5 years ago, are shattered...I had such high hopes for so many things...Here are just a FEW....I wanted to be running marathons, , renovating our new home, in between having a few more babies (we wanted 6 if we could manage it), while homeschooling, and leading worship for my "home church" where I gave my life fully to God in 2003,  in NY, baking meals for the homeless, and writing my own music while being "super mom"....None of that happened...Not one single thing...In fact, everything we worked hard for has been almost destroyed...My health...disintegrated .... The home we worked so hard for, lost 80 grand in value almost over night, due to an unforeseen railroad project they built just a few months after purchasing... We tried like hell for at least ONE more baby... Had over 9 documented miscarriages in 3 years, our church had a fall out, in  more than one way, relationships shattered, families scattered. and I lost my desire to sing, write, serve and love...I lost  "me"...I have lost the ability to even enjoy what I "do have" even...I can barely help my kids with homework or do the dishes now without being in immense pain...And yet,  each  time I look at them I see a child missing in the line up...in some ways I am thankful another child doesn't have to see me this way, but maybe if I had another child and didn't have these immune issues,  that wrecked my body,  wouldn't be SO bad off physically....::sigh:::

through the day, I began to grieve for all our lost babies, and how unfortunate, and insane it all seems to have even had this MANY losses, to have the kind of allo immune and auto immune issues we do...There are soooooo VERY FEW people who have the kind of issues we have to contend with...I have overcome so much in my past, why not this!???  WHY couldn't we beat the odds??  To have spent SO much money (over 18-20 grand on tests and treatments in 3 years) on a dream of a baby or two we wont ever have now...Or EVER ( they are talking even more about hysterectomy due to adenmyosis growing even more in the last 3 months) Then I started having flashbacks of last years tube removal surgery, from last sept-( they accidentally cut my bowel open that day too, oh what fun!)  and every other loss we have endured...Those moments, the trauma, it never goes away from my memory...

The feeling of what was once a VIBRANT life, thriving inside, that has slipped away into death's grip, being ripped from your body is not something I can even put into words...Its a cry/scream in my soul, that is so loud and so painful, that it echos into my dreams at night, and into the dreams of my future, forever....There is no redemption for any of this...I have been screaming, pleading and begging God to show it to me if there is...And he is no where to be found....I know he is there, somewhere...But, I hear nothing from him on days like this....Just the sound of my silent sobs, and soul crying in desperation...

Pain, pain go away...You have taken the life roght out of me...


Sunday, August 31, 2014

Oncology follow up-

I have been delaying in writing this post...

1. Because I feel like utter junk the last week.
2. Because, honestly, there is not much to say that is all that definitive.

I went Monday 8/25 for my Neck to pelvis CT scan, which in itself was just terrible! The barium they made me drink was NASTY, and then they also did contract IV as well...As soon as they injected the contrast, my teeth, eyes, bones, and glands began to HURT! It was honestly horrible...I STILL feel like I have been hit my a truck, even days later....

 I had an appt Thursday 8/28 for follow up to go over the results of that, the X rays and blood labs. I guess I will start off with the first thing he told me...

I Have Arthritis in my legs- Mostly the knees. They are not sure if it is auto immune in nature (RA) yet or not, but it is very visible with just a plain ol Xray. I kind of "knew" that based on how I have been feeling the last year, even 2 + years, but it is much different to have it "confirmed" and diagnosed officially...I am 30 and have Arthritis.

The rest was kind of hard to take in, because he was saying so much all at once yet offering no help...The results of the CT scan in conjunction with blood results:


On to the swollen lymph's:

Basically, they ran a TON of panels on me to check for viral and bacterial issues that might have caused the lymph's to be swollen...Nothing came back showing a cause. But yet, I have over 30+ nodes swollen now in my body. (In May of this year I have 1 to 3 swollen nodes) The majority of them are in my abdomen and right LUNG. I also have one on the left of my neck that is swollen, and more "dense" than the one on my right, and it is affecting my salivary glands etc. ( he mentioned it looked like probable Sjogrens  syndrome) The Oncologist said he was pretty sure that most of not all of what I am dealing with is auto immune in nature and that the Rhumatologist will need to be the one to do any further testing. He didnt feel doing biopsies now would be beneficial because most of them are smaller than would be considered "abnormal" but larger than typical, and because there are SO many of them, it would be risky to do such an operation, especially the ones in my LUNGS.  BUT then in the next breathe, said,  of they cannot find anything, come back and we will biopsy"...

That was pretty much the extent of the visit- he handed me an RX for more pain meds and said ride it out till I meet with Rhum and hopefully they have some biologics to give to stop the immune attack that will work, outside of mega , long term doses of prednisone., cause that stuff just makes me an insomniac sooo bad. I did happen to request a copy of my CT report (will be going to get imaging disc eventually as well to go with me to the Rhum)  and upon reviewing that on the way home, I also have a swollen and enlarged liver (no lesions, but still)  and numerous cysts on my ovaries as well. My Thyroid is disfigured, but with no seen nodules in it- Not sure what that's about, but my primary mentioned possibly removing it totally, even before this scan, due to its large swelling.My uterus is also disfigured (lobular shaped) due to adenmyosis ( much worse than it was in may)
So, basically, more waiting to see more DR's who may or may not have an answer for all this madness...

I am doing everything I can to keep myself positive, but I will admit, this week has been hard, especially considering I don't feel well enough to do anything, other than basic house chores, and laying on bed...
Now, Don't get me wrong, I am so glad there was nothing major that popped up screaming "aggressive cancer!"...I totally am thankful that we are not facing that. But, there is another part of me that is just so sick of battling and being tested and prodded with NO solid answers...This just means more testing, more money spent, more blood drawn...I actually counted I have had over 246 vials of blood drawn in the last 2 years...Yes that is NOT a typo...That many vials...So many tests...I have had 5 high resolution, radiology imaging scans- 3 pelvic, two Head,  , one neck, one chest,(CT's)  and and one MRI, and more than 15 Xrays done on me the last year- do you know how much radiation is all these tests in this short amount of time? Yea its not cool...And yet., things get worse...NO answers....Nothing definitive to even pray against, about, or even just cope with. Its the unknowns that get to me...

I also will admit seeing the adenmyosis progress has me bummed and ready for them to start hounding me for hysterectomy...I do not want to walk down that path right now, NOT yet...Not when I still have years ahead of me should we ever get past this, and out of debt from all this crap enough to pay for immune meds...

So where do I go from here?
I just have to keep trusting, things will be better.....









  

Saturday, August 23, 2014

Starting to feel like "home"

Its been so strange being back in my old home town, back in good ol California...But, it feels GOOD! Its so much different in this new season of my life..I cannot explain it, but I just feel like every day I am here, a weight is being lifted off of me...Despite the craziness of my health struggles, I am filled with much more peace and joy on a regular basis...I can stretch out, breathe and be "me"....Crazy, silly, perfectly imperfect ME...

Me with some elementary/middle school buddies :) catching up, reminiscing, being silly, and making new memories! 


I have been connecting with old friends, in this new season, and it just amazes me how MUCH we ALL have been through, and survived...seeing who we all have become through the years...Being in our 30's now, things are just different, but at the same time, seem so much like the "good ol days" all at once...I have also met some new friends who have brought a richness to my life that I cannot seen to explain in words adequately...

Each new day is an adventure, and filled with new things...Because I am here with my amazing husband and kids, who are new to this area, it is like I am experiencing it all for the very first time. I am so thankful that we "made it" out here, and were able to make the HUGE decision to move 3,000 miles and totally flip our worlds upside down to make this new start...It wasn't EASY, but it was worth it...

With every passing day, it starts feeling more like HOME, and less like a chaotic, prolonged vacation...lol...

Here are some random pics :)



IN N Out Burger!!!!!! YUM!!!
 


                                                           More sunsets....


View from the road that goes across the mountain range... The mountain breeze and sun on my skin...Its priceless...
                                                                           




view from front porch when sun sets after a storm...
critters...lol




More views while driving...Breathtaking every time we leave the house...



My back yard...
                                                                                                          (celebrating hubbys B day)