Saturday, June 21, 2014

Last day....

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



We leave tomorrow at o dark thirty ...




Friday, June 13, 2014

Empathy VS. Sympathy

LOVE this short clip- We all need to remember this and practice this more...



Thursday, June 12, 2014

My Lighthouse

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...




Tuesday, June 10, 2014

How true...


I often think, when people see me out, on the good days, enjoying my family and life as MUCH as possible, regardless of how crazy and scary things might be right now, they must look and think "wow look how happy/perfect they are"...

Everyone is facing a battle, and rarely do we let our guards down for other's to see it...

I choose to let mine down here on my blogs, because, I know somewhere, someone might be facing a similar situation and battle in their life that they have not felt comfortable sharing, and desperately want to feel less alone.....And it seems like the only way we connect and care about other total strangers, is online, in a virtual world....I just wish sometimes, people could see into our lives deeper than first appearances once in a while, and maybe we would all realize, we are hurting, from something, and everyone needs a little compassion, without having to justify why...

Saturday, June 7, 2014

OBGYN appt- Update on Mass-

Went in Yesterday to see the OBGYN about the mass in my uterus that was found a couple weeks ago.

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 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 and a Hysterectomy is suggested....If it grows at all or change by next can, it won't be a "recommendation"...

Obviously not 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...I cannot lose what makes me a woman, my ONLY chance at carrying another baby in the future if they have some medical breakthroughs in immunology...It could totally take that away from me...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, and figuring out the source of the Bone pain 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!!

Today...I am trying not to think about it all...Today, I am missing my babies...
'











I am SOOOOOOOOOOO Wishing I was exhausted from nursing and sleepless nights due to cuddling and caring for a newborn, not exhausted from stress and physical limitations my body keeps putting on me that NO one can seem to give answers for or fix...


Things have to get better soon, right?

Edited to add- ANA came back positive and white blood cells are still elevated- No one knows why yet-

Friday, June 6, 2014

Use of intralipids for recurrent pregnancy loss- Info from Braverman-

On Tuesday, (6/3/2014) Dr. Braverman delivered a presentation at the 34th Annual Meeting of the American Society of Reproductive Immunology about the use of intralipid therapy for recurrent pregnancy loss.

Intralipid therapy for recurrent pregnancy loss – controversies and future directions

J Braverman, DR Ritsck
Braverman Reproductive Immunology PC, Woodbury, New York, USA

Intralipid is a 20% fat emulsion containing soybean oil triglycerides that was developed as a source of parenteral nutrition for patients unable to tolerate an oral diet.  Immunomodulatory functions of Intralipid infusions were subsequently noted and Intralipid infusions, touted by many as an inexpensive alternative to IVIG, are now widely used to treat recurrent pregnancy loss. 

While Intralipid infusions have been used for years in women experiencing recurrent pregnancy loss with anecdotal success, a satisfactory explanation for its therapeutic effects has been largely lacking.  We will discuss controversies regarding its potential immunological mechanisms of action.  There are several studies that demonstrate inhibitory effects of Intralipid on NK cell cytotoxicity, but there is so far no satisfactory description of the mechanism by which this effect is achieved.  It is also not clear if Intralipid-mediated suppression of NK cell cytotoxicity is a relevant mechanism for its effects on preventing immunological pregnancy loss.

Alternatively, Intralipid’s effects may be mediated through metabolic effects on T cells.  While resting T cells have a relatively low metabolic demand and use a balance of glucose, lipids, and amino acids as their metabolic fuel, activation of T cells causes them to undergo a dramatic metabolic reprogramming.  While activation of effector T (Teff) cells of the Th1, Th2 and Th17 induces a decrease in fatty acid oxidation (FAO) and shift glucose metabolism away from oxidative phosphorylation and towards glycolysis, regulatory T (Treg) cells conversely rely heavily on FAO, and not on glycolysis, for fuel.  The distinct metabolic differences between Treg and other T cell lineages may provide a target for selective immunomodulation that could be exploited therapeutically.  Recent studies in fact have demonstrated that addition of exogenous fatty acids to T cells during activation inhibits differentiation of Teff cells and favors differentiation of Treg cells.  Additionally, metformin increases Treg cell generation by binding to and activating AMP kinase, which in turn inhibits mTOR and causes a decrease in glycolysis and an increase in FAO.  Thus, Intralipid infusion may function as one arm of an immunometabolic approach to promote Treg cell-mediated tolerance of the semi-allogenic embryo and efficient embryo implantation.      

While there are obvious differences in their biochemical composition, Intralipid infusions are promoted by many clinicians as an inexpensive and effective functional alternative to IVIG.  We will discuss this controversial idea informed by both the literature and our extensive clinical experience with both Intralipid and IVIG, including evaluation of our own data.     

Finally, we will discuss areas for future research including the use of alternative intravenous fat emulsions containing higher ratios of ω-3 to ω-6 fatty acids.         



Monday, June 2, 2014

Adventures in urgent care land...

So, a lot has happened in the last week or so...I wish It was good things, but instead, just more junk heaped on to our already full plate...

So 2 week ago I was in urgent care for side/abdominal pain...Turned out to be inflamed lymph in my intestine etc...Cause: remains unknown still...Still dealing with pain and major gastrointestinal issues, but i'm alive at least....Been trying to tough it out till we get to CA and get into a new practice ...

Fast forward to this last friday, and after mowing the lawn the day before, (First day I felt like getting out of bed in weeks) I find a tick, in my scalp..my first one ever...Ick! Here in upstate NY, lyme disease is HUGE ( 1 in 20 ticks carry lyme), and because my Son was diagnosed in the very late stage of Lyme in 2012, ( we never knew he was  bit) I wanted to be sure I went in and got the preventative meds anyway, especially since the tick wa a nymph, which 90% of the time are the lyme carriers....So, off I go...

I get settled and in walks the DR I saw a week before for the side/abdominal pain...He wags his finger upon walking in the room, saying "I have been trying like HECK to get a hold of you!"...I was a bit baffled, and curious a to why...?...He went on to say he had been trying to get a hold of my primary (the useless doc who told me that if holocaust survivor can get over what happened to them, I need to get over our miscarriages....I could go on and on about the assine stuff he has done and said...) Then he tried to call my cell, but didn't leave a message, because I go by my middle name (Surprise, Megan is NOT my legal first name, my parents decided to torture me and call me by my middle name constantly confusing DR's) and my voice mail said "you have reached megan" and HIPPA makes it so that he cant take chance in case it wasn't my number...OK....

ALL that to say...The ultrasound upon further review showed some growths. Apparently my uterus is distorted in shape and size, and there is a myomatous infiltration of the uterine wall, and possible adenomyosis...Apparently it looked bad enough that the Urgent care DR's suggested I go in for a biopsy before we leave NY....I asked if there was anyway I could wait till we got sorted in CA, and he advised I do not wait...The big reason he wants to push for biopsy is that I am symptomatic, having pain with intercourse, and general pelvic fullness and increase urgency to urinate etc...I went to my OBGYN about thi in Feb and was given a RX for hydrocodone and offered NO testing...So the Urgent care DR set me up with a NEW primary that i going to advocate for my testing for the biopsy, and also, get me a referral to see a rheumy DR for the other issues (Bone pain, extreme fatigue, vision issues) which my current primary was not willing to do, he just wanted to give me MORE zoloft and xanax, and offer NO testing...

I am really hopeful this new DR can get a few thing rolling before we move to Cali, and cut off as much wait time as we can...If I can get in for the testing before we leave it will ensure I get into a practice out there sooner than if I was new patient  VS transferring records and having a head start on it all....

As far a the uterus thing goes, that scares me because the typical treatment for symptomatic people is a complete hysterectomy...That makes my heart jump in my throat...Take away my uterus?? I mean, yea, I hate the damn thing, it is a serial killer to my babies with the help of my immune system, but what if, just what IF, one day, we got the money, or a new med breakthrough in reproductive immunology happen and we can try again....But if I have no uterus, there is no more chances... As much as we have like NO hope of a take home baby due to the many faucets of our reproductive issues, to have literally NO womb inside of me just makes me feel sick inside...The grief I felt when one of my tubes was taken was terrible...I cant imagine having to take it all out and never , ever, ever be able to carry a baby again, not even for a couple weeks?...NEVER...? I just can't even articulate how much that would devastate me....

However, if it will save my life ( god forbid it (the growth) was not benign ) I would do it...I just hate the thought of this having to even be a POSSIBILITY...

::sigh:: I wanted to be having a baby right about now, not a biopsy....


In other news- we leave for Cali in 19 day!!!!!

Also, my mom is waiting to hear back on some of the other testing they have done...no news yet though.....Thank you for the prayers!