Friday, January 23, 2015

Update on revisit to city of hope

Just wanted to give you guys a brief update on my last appointment with the specialists at city of hope. I saw their rheumatologist and internal infectious disease medicine doctor. 

They both went over all my history and all of the labs and scans that I have had. It took about 5 1/2 hours. At the end of the appointments both of them agreed with The original oncologist, you said that the lymph node issues are a result of an autoimmune issue.NOT cancer.  They also said right now they are unable to pinpoint exactly what kind of immune disorder it is. The rheumatologist suggested going to the mayo clinic, and bypassing UCLA totally...of course with a referral from him. But he said even enigmas (that is the exact word he called me lol) like myself are having an extremely difficult time being excepted into mayo. I guess they are just overworked and understaffed... I may pursue that in the future, after  I've had a little bit of a break away from crazy doctors appointments! 

Because I am doing so well with managing things on my own, AND  because when they went feeling around yesterday they could feel absolutely no enlarged lymph nodes (Holy crap this is exciting!) , they said that I am free to "walk away from the medical world" (their exact words) for a while and just live life. 

For some that may feel or seem like a disappointing appointment considering we did not get any specific or solid answers yet... But I have come to except the fact that my body is a little bit out of sorts... And is not just presenting with symptoms that are cut and dry... Just like with the pregnancy losses it took some time to find the right doctor who could figure things out... I believe that one day I will find the right doctor and I will get solid answers. However, for now, i'm taking a break from full-time doctors appointments...  I'm taking a break from the medications... I'm focusing on staying positive in my body mind and soul.  I am using alternative methods to manage my pain and symptoms. And honestly the news from the doctors  could not have made me more happy. I have been feeling this draw to step away from doctors for a while, and I have weaned off of and come off of a lot of medications. I have felt like going to a more natural process may be more beneficial to me right now, but was nervous that the medical community would kick their feet, and discourage me from doing so. (because since when have they ever encourage anybody to go to alternative message, right?- so I was a bit surprised to hear their words) Of course they did say I do need to come back in six months to a year for a check up and another scan... But for now I am free to live. And that is exactly what I'm going to do :) 

I thank everyone for the prayers,  and putting up with listening to my whining On here... I am so very thankful to be mostly on the other side of this! I know that I will have bad days every now and again, and I have some already existing health issues that cause some problems resulting in the diminishing of quality-of-life. But I am starting to understand that I need to adapt to my new normal and just modify my life a bit. If I can do that and stick with a positive mind, and a bunch of prayer warriors on my side I know I will be okay. 

This last year or two of my life has been a insane ride... I have learned a lot about myself and those close to me... I will never forget those things that I learned... I will never forget what this journey has done to shape me... It has been hard but it can't break me! 





Monday, January 5, 2015

January 4th

Merry Christmas and happy new year to everyone!! I hope this years holiday season was filled with more joy than tears for all of you! 

Just wanted to write a quick post and spill out some of my feelings somewhere...I am aware most of the readers I had before probably aren't even keeping up anymore...so this is really just a therapeutic place for me to vent at this point...anyway...

January 4 is always a hard day for me...it would've been my father's 61st birthday, and should have been Hannah's seventh birthday...but neither of them are here on this earth to celebrate ... Both were taken far too soon... 

To top it off, I started AF that day, which only reminded me that my body is broken...that I will never bring forth life again from my womb...it doesn't help that there are new babies all around the church too...I am not so bitter anymore that I can't be happy for them, I truly am... I just hate the odds at which we have been faced with. And I'm not sure the pain associated with that will ever go away. 

I did however conquer a little bit of a fear I had, despite the day starting off emotional and difficult...for the first time in almost 2 years, I sang with the worship team at church. I'm not going to go into details about why this was such a big deal for me, other than lightly touching on the fact that our previous church had laid on us a bunch of hurtful things, that was detrimental to us ever serving in the body of Christ again, so the fact that we are even attending another church to begin with, let alone starting to serve in ministry is a huge deal! After church was over I felt really good...I felt accomplished, because I never thought I would be up there again...

But by the time I got home my heart was aching again... No matter how many good things I tried to meditate on, and no matter how many wonderful things happen, my heart just hurts...

It has become clear to me through the years that no matter how much time passes my heart will never fully heal...No matter how much I try to make myself 
Move on, it never works... 

There will always be a part of me that cries for  what "should" have been... For my Dad...For Hannah... For ALL our babies ... 

January 4 should've been a great day of celebration... But instead, it's just another day that Reminds me you're not here...

Monday, December 29, 2014

Update

Just a quick little update- 

My primary dr and current rheumatologist looked over the pathology report from surgery at the end of October, and agreed that I need to have a second opinion with a different oncologist. so that is exactly what I did. I sent my stuff over to city of hope, and I've already had one consultation so far. They are going to send me through some more rigorous testing with other specialists, to look for other diseases or issues that could be causing lymph node involvement. If after they have done everything testing wise they can , and they have not found a cause they will do another biopsy and remove a whole other lymph node. But for now I will be seeing their hematologist, internal medicine and infectious disease specialist as well as their rheumatologist. I should have a couple more appointments with those specialists for consults by the end of January. 

In other news, we have settled nicely into our new life here in California. Starting to serve in a church again, and becoming more active in the community. The kids are doing absolutely fantastic, and my husband is doing wonderful at his job and already up for a promotion soon. 

As for me, physically things have gotten better pain wise, but I've gained 25 pounds . Ugh . I've also been a little melancholy, just thinking about the last few years...my heart still stinks in my chest a few times a week with pain, grief and regret...I also still feel a tinge of jealousy every time I see a belly or a new baby...but I'm still alive and they still have some amazing children here already...i'm trying to be okay with where my life is right now. Even though it is not the way I had envisioned it... 

I hope everybody had a wonderful Christmas and may you have a blessed new year! 

Tuesday, December 2, 2014

I am sacred...

The sacred project film....



I have seen this floating around the loss community the last few days, and unfortunately I did not get our babies names (there are too many anyway) in the film, but I know many close to me, who did, and when I sat to watch this, I was so moved with emotion, I wept at first...What I saw was not grief, so they were not tears of despair, but, on the contrary....Tears of release, and JOY....I saw women embracing what happened to them , but, rising from the ashes and learning there is beauty in these ashes, and  in what we have experienced, and there is no shame....we are NOT broken...we are SACRED....













I started to realize, I can stop loathing my body, and embrace what it is, what it was and what it will always remain as...A sacred place where my babies...ALL of them....My earth babies or my heaven angels...They all felt LOVE...







                               I am a scared space, forever and for always...Because of THEM....

(my picture, taken today, to always remember, I am sacred, and when I feel so very broken)

Tuesday, November 18, 2014

More...

More DR appts, more money spent, more driving from here to there, more meds to add to my already long list of RX crap I take a day, which means more weight gain (up 13 lbs) and now, MORE confusion...

I saw Rhumy last week, and he checked out the pathology report from surgery, and is not convinced cancer is out of the picture entirely...The way the report reads is there was some abnormalities and such that was not conveyed properly to me from the oncologist...He is pushing for a second oncology opinion...I also met with Primary who read the report and agrees I need a 2nd look at things...So...back to the drawing board with all of that...

The Rhum also gave me some celebrex to help with joint pain and its been helping some, as I dont even need to take narcotics unless my jaw starts to hurt from the parotid gland swelling. Anyway...He also decided to try and get me into UCI (university of Irvine CA) instead of UCLA simply to cut back on costs and travel ( it is HELL driving to LA)...I should have appts for all that in a few days. The office ladies are setting it up and I will get some calls for dates...Hopefully wont be too close to Christmas...

Then I saw the GI, and he set me up for a colonoscopy and endoscopy on Dec 5th and gave me another med to take, called Linzess...OMG, it works...and FAST....anyway......
Oh and primary set me up with a new OBGYN (appt mid Dec with them)  and I am going to a pelvic U/S Thursday to look at the adenmyosis a bit closer too since a portion of that was "lit up slightly" on the PET scan......

Really no more valuable info as of yet.....Just more tests and DR appts to deal with...Its getting frustrating...I want this all to be OVER...I am so tired of being sick and tired.

Wednesday, November 12, 2014

Good news and Bad news...

Sorry for not updating sooner...I have been in a bit of a "funk"

Good news is...NO cancer was detected in the sample taken (the node they took out)!! That was a relief! The oncologist did say that the node was extremely inflamed, which seemed so odd because my sed rate is normal, and I show now signs of viral issues or infections, so he said he stand by his original claim that this is immune related.

The Lip Biopsy to test for sjogrens syndrome (auto immune issue) was also negative which they were surprised about considering that I do have many of the symptoms, however I have symptoms of Lupus but that is also negative (although the rhum didn't take into account my levels for the Lupus panel were only 3 points away from being "positive", but whatever) and I have been negative for almost every other immune issue they have tested for, yet exhibit physical symptoms that would line up with those immune disorders that they tested for...The DR's all seem very baffled.  The Oncologist suggested I get a referral from Rhum and Primary to go to UCLA for testing...That is NOT something they do lightly...So obviously there is  some concern there about what is going on, and why they cannot pinpoint a issue, specifically the immune issues...The Oncologist also mentioned I might have a rare , or new auto immune disorder that they can discover etc...Who knows really...

The bad news...We are NOT any closer to knowing what is going on....

Some would argue that the Hashimoto's and Dysautonomia ( from the NCS) alone would cause much of what I am dealing with, but NOT the lymph issues, or the skin blisters, and other strange inflammation caused issues that I have been having. (arthritis in knees, and inflammation in joints all over now) So basically we are back to square one, with NO answers...

I see Rhum on Thursday and we will go over the UCLA referral and also talk about possibly using some biologic meds empirically (meaning with no firm diagnosis) and go from there...

I want to be able to say I am super happy that the tests they did during surgery were negative, but I just feel frustrated they cut into me for the 6th time in my life, and it produced no answers, and because we are still dealing with the unknown, I am just frustrated beyond belief...And feeling SUPER depressed...This means, MORE time spent driving to DR's, more MONEY spent, more poking and prodding, and who knows if it will even make a difference...I just want to feel normal again, and live life, and not have to worry what one day to the next will bring....Some days are good, some days are REALLY bad physically...And I cannot plan or do anything in advance, lest I have to cancel due to a "bad day"...Its just sooo exhausting , physically, and emotionally...I am freaking 30 years old, NOT 70!

Anyway, enough ranting...I just wanted to give an update for those who even care to read or whatever...Im feeling like most of this is falling on deaf ears because it isnt related to TTC or baby bellies or baby milestones...And I suppose, I am really writing this for myself, because at the end of the day, I have to HOPE, that one day I will be past all of this and have it managed enough to live normally, and I can look back and see how far I have come...

Many thanks again to all those praying and thinking of me...

Many prayers out there to my friends who are now new mommies or are about to be! And tons more prayers for those still struggling to have a little one...

XOXOXO

Meg


Sunday, November 2, 2014

Right back to where I began...

With an incredibly heavy, deep ache in my heart...

As I sat in church this morning, tears rolling down my cheeks, I could do nothing but feel defeated...I am back... Contending with grief again....

The last year or so has been filled with a lot of ups and downs, none of which involve TTC or baby making, losses or anything like years past...This year has been all about surviving...Surviving chronic health issues, moving cross country, more health issues, possible cancer etc...And so far, I have survived...Even if only by a small margin, I AM living and breathing today...

But my soul....It feels dead...Cold...Hurt...Scared....Angry...Bitter...Grieved...Broken...

With every baby bump I see, and gender reveal party, and ultrasound picture...With every birth announcement, and baby shower invite, my soul dies a little more...EVERYTHING we have endured in the past 4 years, (15 + losses)  and what we are facing now (possible hysterectomy = never having another baby, EVER, ever, EVER)...The heartbreak of knowing I am broken, and beyond repair to hold love in my body and nurture a life...It is over taking, and consuming, and no matter HOW MUCH you fill your life with things to remind yourself of the GOOD stuff, and try to move on, it just only masks things for so long, until you are right back to where you began...Right in the moments when you first heard the doctor say "I'm sorry there is no more heart beat", to " I am so sorry, you have lost this one too, and " I am so sorry, this one is ectopic, and we need to do surgery and remove your tube:".......AND, "I am so sorry, your chances of ever having another biological baby are less than 1% without 30 grand a month to take risky medications that may or may not help", to " I am so sorry, but the andenmyosis is far too big now, you will have to have a hysterectomy"...It brings back all the memories, and right to that VERY moment in the past, when a piece of my heart broke...And then, it just breaks again, into smaller pieces as it replays in my heart and mind, again and again...

Some might ask, "how do you know having another baby will even help you heal?".."Why cant you just be happy with what you have and MOVE ON with life"

Because, I had a loss before each of my living babies, one being a very traumatic late term loss in 2008, and we had our rainbow babies very very soon after each of our losses... And there was never consecutive losses in between, at least back Then...Each rainbow that came after a loss, had a way of shining light into the darkness, and reminding me that good things CAN come from the storms...It was that healing I held on to with such a death grip, that kept me trying, loss after loss, after loss after loss etc...It was that HOPE of having the rainbow at the end, of beating the darkness...Not that our rainbows "replaced" our angels...They didn't...But there was JOY that came after sorrow, and it was intoxicating...I'm sure most of you on the "other side" holding your rainbow now, will agree...There is just NO joy that comes close to those moments with your rainbow baby.

Now, to have gone through ALL we have with the last 4 years of TTC again, with invasive procedures, crazy meds, numerous losses, including 4 ectopics in a year, one requiring tube removal... And now, NO possibility of a rainbow, EVER.... It really has brought me to a place where I am not sure I will ever "be okay" again...I can try AND TRY and try all I want to pretend this was just a season of my life and I am "over it" now, and content with how my life is right now, but when I do that, it only lasts soooo long, before something out of the blue drops in and triggers everything, ALL OVER again, and I am right back to where I began with pain just as searing as it was at the moment of each loss...again...and again, and again...and again...I am not content knowing I have more angels in heaven than I do living children on earth...I will never be content, knowing we are "missing" some of our precious children, with each year that passes and our rainbows grow, I see glimpses of what I think some of those angels might have looked like had they lived, or what personality they would have had and how they might have interacted with our other rainbows... With each holiday, and milestone in our family, I still ache and cry at the "what should have and could have been's"...I can be thankful for the many blessing we do have right now, but it wont bring back my dead babies, or my dead dreams....I cannot let go of the dreams we had....I cannot stop wishing things were different...And even though it is killing me inside, I cannot forget, because, I cannot stop being reminded at every turn...Every belly, every baby....Everything revolves around this cycle of life, that I am incapable of ever experiencing again....


Thursday, October 30, 2014

Surgery is over-

I was going to make a new vlog, but frankly, I cannot talk well due to the respirator thingy they shoved down my throat....So I will attempt to let you all know how it went the "old fashioned way".

I checked in yesterday (Oct 29) at 5:15 AM at the surgery center...Of course the entrance is the same as the maternity wing, which kind of stung, because id give anything to be having a baby right about now/then, not going in to have my neck sliced open...Anyway, I digress...

I get in, they have me change, and get prepped with an IV etc- I got to snuggle under this ammmaazzzing comfy heated blanket thing that is generated by a hot air blower thing...It was like being under a heated cloud!
Then anesthesia came in, asked a bunch of questions, and also checked me out, vitals and such...
I had kind of a dry cough, and a lower oxygen sat so they had me do a breathing treatment real quick.
Then , we just waited for them to take me back...we said some prayers, and even as the anesthesiologist came back by to let me know that the ENT was there and scrubbing in, and gave me some "happy juice" stuff in my IV to make me sleepy and less anxious, and then, HE also, laid hands on me and prayed over me...was very , very powerful...That was a first out of the 6 surgeries  I have had,...very cool!

Then, they wheeled me back for about an hour and 20 mins, and did the open biopsy, as well as the lip biopsy for sjogrens syndrome. I woke up from everything easily and had minimal pain. 
I went home about 11:30 am, and dont even remember half of the ride home, LOL...

I got to take off the big bandage today, and just keep my steri strips dry- 

I have about 5 stitches in my mouth as well, for the lip biopsy....

(sorry for my nose close up! LOL)


Things are a bit more painful today ...But I have had my hubbs home, and the kids waiting on me, and my snuggle bug, Molly to keep me comfy when I am in bed napping etc..

Now we wait a week + for the results to come back...Praying it is nothing, but also praying for some kind of answers! SOMETHING!

Thanks for all your prayers guys! 
<3






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...





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...

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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