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.....

For those interested in medical jargon, I have attached some scans of the CT reports( Below) - (I cut off name and B date, just cause, well, this is a public blog and all, lol) You can click on the image to make it bigger - That is it for now folks...More news to come , Hopefully, after I have my visit with a Rhum in Corona . CA on Oct 2nd. Then, I have a second appointment for a 2nd opinion January 2015, through my Beaver medical group practice, just for good measure.






  

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) 



Friday, August 15, 2014

Neuro appt update - and "emo" grumbling

Well, that was just a waste of my TIME  and MONEY ..He  (neuro) basically said I have abnormal brain waves causing seizure activity but they don't know WHY or really if there is any "fix" other than tweaking medications the rest of my life...I will NOT be cleared to drive anytime soon...Which was another bummer...So, thousands of dollars later on tests and DR appts, etc, and still NO real answers....

I have a follow up with Oncology on August 28th, to go over the blood, X-rays and body CT -and go over those results....I'm not holding my breath for that either...

I have been calling all day to get into to see a Rhumy sooner than January, and have two places calling me back in the next week with appts either at end of Sept or mid Oct...Not soon enough for my liking but better than JANUARY!

If i had the extra MONEY I might try to go the holistic route but I cannot just stop taking the meds I am on right now abruptly or it can cause serious issues, and I cannot just start messing with herbs and cleanses right now, due to drug interactions....

Of course, this is all petty in comparison to the fact that one of my childhood friends just lost her husband to cancer yesterday, and frankly, I feel like a tool bag complaining when I am at least living, breathing and HERE on this earth, even if I am suffering a tad....At least I am here...I am alive...I have my family, and the beauty of nature right out my front door to enjoy...

But I cant help but feel SLIGHTLY weary after all the tests, appts, hospitalizations etc, and NO real answers, other than "here take this medication that might kill you, or give you enough side effects to want to die"....Something has to give with all this medical crap...and SOON....

The other part of my funk is...I cant seem to shake the grief of losing our babies...We lost SO many....It almost seems surreal looking back on it....No matter how I try, the funk remains....There are not even any "should be due dates" coming up....But still... each baby picture ( that was born around  the time one of our angels would have been) and preg announcement that comes through my news feed, e mail or blog post just hits me harder...reminding me of the loss of our babies, the loss of my health and the loss of a lot of my FAITH....I could "take an online break" but it wont stop the aching in me...God hasn't even been able to penetrate that part of my soul....The sadness, anger, and frustration that , we never got another rainbow, after trying for so long, and investing so much time and money, and only to have had loss, after loss,after loss, after loss....and the fact that we most likely never will get another chance, even at my "young age",  especially with all the health issues I am having HURTS....Part of me wonders if all those losses, and the immune connection with them may have triggered this...I may be contacting DR Braverman to see if I can do a bit of testing through him to determine if what I am dealing with is a result of the pregnancy losses, and the immune fire storm that was started as a result of those...But of course, that costs more MONEY, that I don't have right now....Mostly due to wasting it on futile attempts to get that rainbow baby that will never be...If I wasn't such a FIGHTER, id have given up ages ago...But the fighter in me got me wrapped up in "I WILL make this happen", and now, I am suffering the consequences, in so many ways....Financially, spiritually, emotionally,and physically.... 

I am TRYING to just "be still" as God says...Its a LOT harder than it sounds....Trust me...

Tuesday, August 12, 2014

Getting settled...

We finally got a house! (not that I didnt LOVE spending time with my parents while we waited to get our own place, but ya know, living with your parents in your 30's even if it is short term just feels NOT right!)

 4 bed 2 full bath- ( MUCH cheaper and bigger than the house we had in NY)  Moved in over the weekend...Still have to pick up some odds and ends,( wall hangings, decorations) and dining room furniture, and more bedroom stuff for our master, and a few more living room things, but we are pretty much set...Its been a rough few days for my physically getting things done, but with the help of some kick butt medications, I made it! LOL....I don't have much more to say other than, I love where we are living, and am excited about the new chapter in our lives! Here are some pics of the house (sorry for the poor quality, between my shakes, and just not caring cause of exhaustion, they are not the greatest)...Place needs some work, but you get the picture :)





 master bed with like nothing in it..LOL...


My walk in closet! yay! :)





View from front porch :) Can see LA on a clear day/night :)
                                                      quiet neighborhood :)











This is my new "workout" program...the stair master...LOL...42 steps up to porch...:) BUT once you get up its like a birds nest all set away and peaceful!

Thursday, August 7, 2014

Skin biopsy results, and Oncology consult- Plus beach pics!

I have good news about the skin biopsy!(finally good , definitive news!!)  It was totally neg for melanoma! whew!! what a relief! Just another thing to cross off the list of worries! :)

Today I met with the Oncologist about my swelling lymps , elevated RBC and WBC counts etc, and bone pain...He does not suspect lymphoma, in regards to the swelling, but rather , probable auto immune causes...He did however run a slew of other tests...15 vials of blood (still nothing compared the the 36 vials I did for the reproductive immunology testing last year, but still!) looking for viral, bacterial and fungal issues as well as leukemia stuff...He ordered some detailed X rays of my lower legs, and also a contrast CT from the neck down ( appt for that TBT, waiting on hospital to schedule that)...I follow up with him in 3 weeks to go over all results....He seemed like a great DR, listened well, and genuinely seemed concerned, yet at the same time,  perplexed at my situation, which is good and bad...Good, cause he has interest in solving it, but bad because there seems to be no quick or easy fix or even a reason behind it YET.... He also gave me some different med's (ultram) to control pain that are not as whacky as hydro's.

Some frustrating news on the Neurology appt...The DR had an emergency and had to reschedule me (and a bunch of other patients) from aug 11th to the 15th...so Not too far off, but still, I wanted to see what he had to say about the 150+ images i have on my brain, and the EEG stuff...I got my records released from Hospital stay on July 17th/18th, and got the imagining discs too...There is a bunch of mumbo jumo I don't understand in the reports, but I did scan through my images and thought it was neat to get a limpet inside my head so to speak! Here are a few pics...






















NO idea what any of this means...But the pics are detailed and neat to see!!....so I am anxious to meet with this neuro on the15th...The meds I am on for seizure activity seem to be working and the side effects seem to have leveled out, I do have a few days here and there where I just do NOT feel "myself" but at this point, I have been feeling "off" for so long not sure what normal or "myself" even is these days....

Oh and I have what appears to be a possible goiter on my thyroid ( which they failed to mention to me in hospital, read it in reports) so I am glad I have an appt with the Endo on Aug 14th, to go over all that jazz now too...

Still trying to get into seeing a rheumatologist sooner than January! Thats way to far, especially if ALL of this is auto immune in nature, and everything else comes back clear...I may even bit the bullet and see if Braverman can run a few immune panel labs on me before hand to get an idea of what is going on.....

Other that, trying to enjoy the last few days before the hubbs goes back to work, (sad face: I have lived having him around so much!) and we get a place of our own and start the moving fiasco soon ... (waiting on  some news back from a  possible rental we are interested in, that is close to my mom, so she can drive me to appts etc, since I will be banned for at least 6 months from driving due to the seizures)...

We did manage in between all the craziness and DR appts,  to finally make it to the beach (Huntington beach, CA) for a day (Hannah's loss date, it was so therapeutic for me)....Here are a few snap shots from that....What a great, but exhausting day! I LOVE the ocean!! SOOOOO glad to be back where it is only a short drive to heaven on earth! :) 







































I want to thank each and every one of you have been praying, it means so much to me...I feel so weary, sometimes it hard for me to pray and I need the reinforcement from those who are strong than I at the moment....I am  also sooooo thankful that we  have found a church body that we seem to have seamlessly "fit into"  ....The people are REAL, authentic, and caring, and at the same time, are not too pushy to get us "involved" ...They recognize our battles, past hurts and are letting us take our time, and praying diligently for us as a family......As well as having my MOM close by to talk, vent, and cry to... There have been a lot of blessings, even though, some days, it feels more like a onslaught of fighting an unending battle of road blocks...Moment my moment, I keep reminding myself...


That's really about "it" for now...
Prayers we find the RIGHT house in the RIGHT location and for the RIGHT price are appreciated....
:)

Thursday, July 31, 2014

Follow up with primary and skin biopsy

Yesterday I had my follow up with my Primary DR about the hospitalization a couple weeks back- we went over the new meds, and confirmed the upcoming appointments for Oncology and Neurology (August 7th and 11th) And made sure I go get my OWN set of records and imaging to have on hand for those appts, even though they should be forwarded, he suggested I keep some for my own benefit....While I was there, I had him look at a "spot" on my leg that had grown in size, shape, irregularity, and changed colors from brown to black/red and raised as opposed to flat,  in a matter of a couple weeks.... He biopsied it on the spot with a punch hole thing...Unfortunately, it was not so easy to come off, and they needed to grab a scalpel and forceps to finish it all and get stuff needed for sample..Ouch.....Should have results in a couple weeks for skin biopsy, and should have more info on lots of things, like the bone pain and swollen lymphs and such, maybe even an idea of the cause of seizures (but most likely hereditary in nature) by mid august....In the meantime, I need to keep calling rhumetology (joint pain and elevated ANA to try and get a sooner appt, cancellation anything...January is sooo  LONG to wait...ugh

Still adjusting to the seizure meds, but it seems like it has slowed them down a great deal...I am still having a few rough times a week, today is one of those days....glad the meds are helping, But in the process, they have also ramped up my emotional radar a tad as well...Finding it harder to deal with emotional triggers (Like our angelversary for Hannah Marie who passed august 5th 2008- and the many other pregnancy losses)....But things could be worse...Right? day by day, moment by moment, I am making it through....Trying to find joy in whatever I can...whenever I can....

Sunday, July 20, 2014

Some answers, after an ambulance ride...

Since my last post, a LOT has taken place... A LOT!

Bare with me on this post, as I am now on some very heavy and crazy medications that give me the loopies as side effects, not to mention the weakness/numbness on my predominant side, makes it hard to coordinate while typing..I am also a bit foggy about what happened and when due to  the nature of the issues I am facing right now....

Wednesday, July 16th, I felt a little "off" all day, but nothing I could pin point. It was really seeming to be NO biggie, Just some brain fog and of course the numbness etc...We just hung around the house a little anyway and had no real place to be, so no harm done...I spent the afternoon making phone calls trying to get into see a different Neurologist  a bit quicker...No progress there...Wait times for all specialists are just ridiculous!...Anyway, we had dinner, and a relaxing evening with the family...Out the kids to  bed, and then...It happened...about 10 PM....

I sat on the bed, to check a check a few e mails, checking FB etc, and from there, about 45 minutes lapsed where I was unable to remember what happened, and was unresponsive. My husband explained to me, that I got up, (what I think was to go to the bathroom), fell over on the bed slightly (which inst all that abnormal due to joint and bone pain) and then, kind of "zoned out"...I sat there,eyes glazed over, but open wide, and was unable to speak or answer questions...He thought I might have been teasing him. But after a few minutes it was clear I was not "OK" and things were wrong...He ran and got my mom who proceeded to call 911...

While they were waiting for EMS team to show up, My husband kept shouting for me to look at him and stay awake...I remember that slightly...Then before I know it, I see 8 or 9 fire and /EMS workers in my bedroom, (as well as the looks of terror on my husband, mom and step fathers face, luckily the kids were sleeping!) as they hooked me up to EKG monitors etc, then I go blank again, and just barely remember getting to the hospital , (St. Bernardine , since Loma Linda had 9 ambulances waiting to unload, we went to a closer less busy one) and needing to pee SOOOOO bad...The bathrooms were full, NO nurses to be seen, NO bed pans (yuck anyway!, but I was desperate!) and I had to GO! I think the adrenaline of that woke me up out of the episode enough to wonder, what the HECK was going on! It all seemed like a nightmare I didn't even have full recollection of...I arrived at hospital at 11:30 pm.

I sat there for hours, with NO medical attention, NO IV fluids and NO monitoring on heart, pule, OX etc...Finally they let the husband come back and once he began to ask for things, they finally started to do hourly vitals, and order the tests...

From there, things went downhill, as my husband tried to explain what had happened and that we had been in the ER two nights before at LLMC, and explained that they did a set of tests already that did not show any results, and perhaps some other testing would be needed. That request was NOT welcomed by ER staff.  we "let it go"and  let them REDO all the same tests I had Monday night, and of course, they came back "fine"...I was approached on my way back from imaging, by a wonderful CT tech who will go unnamed for his protection, who said I REALLY needed to push for and MRI, and that ER staff doesnt "like" to do those sort of things and will put up a fight, but they CAN do them....

From there, I decided to log on to FB now that I was awake enough to read and comprehend a bit better, and asked a group of ladies ( who have a wide variety of chronic health issues and have run the gamut with less than stellar DR's and hospital staff., a lot with medical training themselves as well) what our next steps were, what tests to ask for etc...After a few posts back and forth explaining symptoms and what tests had already been done, we came to the conclusion an MRI was needed along with a EEG...

Before I could even ask for further testing, the nurse AND ER doctor came back to talk and said they would be releasing me, since  my labs , chest X ray and CT were fine...He went on to further say, " I believe you are stressed and you may need to talk to a counselor about some of the things I am experiencing since It seems ore emotional in  nature" .........I sat there stunned, and unable to even respond....All I could think was......Are you kidding me! I am partially paralyzed on one side, with numbness and tingling, High blood pressure, and was unresponsive and brought my ambulance!??

My husband pipped up and said, NO this is NOT psychosomatic or emotional in nature, there is something wrong  with my wife, I saw her eyes roll back in hear freaking HEAD dude!..YOU are GOING to do an MRI, I am NOT leaving until you do...The ER DR huffed and puffed about having to wake up the MRI tec to do her job, and stomped off...Meanwhile nurse comes back to draw blood with a nasty attitude, and I am pretty sure she blew out 3 of my veins on PURPOSE while trying to get another blood sample, and not once apologized or spoke a word to me...Off she goes...

We can hear them in the distance talking about us, and through the whole night, they had been making fun of other patients in the ER, loud enough that the entire floor could hear them! They violated so many HIPPA regs I cant even count them all, honestly! Not to mention, they give out narcotics like candy...Literally, 35 people came in with non emergent cases, got a handful of norcos' and was sent out the door, like clock work!  remember I could hear just about everything around me....Oh and lets not forget the "fun" they had making fun of a lady who defficated on herself...They laughed and called her "poopy pants" for hours...It was SICK and SAD! By then, I knew we were in for a fight to get proper medical care..

I DO understand ER dr's have a rough go, dealing with some pretty nasty people, drug seekers, homeless etc...But it was apparent I was an urgent case, and was neglected severely, while they handed over morphine and norco's to everyone else that walked in the building with the sniffles...

The nurse and DR come waltzing back in, with smug faces, saying the MRI would be done soon...I politely asked about water or IV fluids,  was ignored, then asked about an EEG, and she snapped back "The doctor is doing you a favor as it is with the MRI, dont push your luck, you don't even need an MRI as it is! it will come back clear and you are going HOME"...I fired back..."A favor?? how is doing your JOB a favor!? This is MY LIFE!!, I didn't come in with the effing sniffles lady!, I have NO asked for narcotic drugs, I am not a drug seeker, I CAME IN ON AN AMBULANCE!" ...She swiftly exited the curtained area, and proceeded to call me some choice names to another nurse, knowing I could darn well hear them...

MRI tech gets there about 5 am Friday...Still, NO water, no IV fluids, and no vitals done since 1 am....I take the long walk (well, I laid in a roll away bed) with the MRI tech who was honestly sweet as pie and was not even miffed at having to wake up and come in for my test, she treated me with respect and dignity... The test was LOUD and LONG...But before ya know it, I was being wheeled back in my hospital stretcher.

Upon my arrival back to the ER dept, I saw a machine set up next to my bedside area , where I was informed by the same snotty nurse, that the neurologist they called to review the MRI, requested a EEG be done...I almost laughed out loud...The test I requested be done hours before (which would have given more accurate results if done earlier) ...From that point on, neither my husband nor I saw the ER doc or the nurse...It was about shift change anyway (7am)...They didnt even tell us we were being admitted at that point, and the decision was made by nero the same time she requested they do the EEG...The next nurse who came in informed us we were being admitted...It was a relief, but scary too, since no one told us the outcome of the MRI....

The Neuro tech come over and began the EEG...Lots of goopy sticky things being stuck all over my head...(pic courtesy of my husband who felt accomplished at getting the tests we fought so hard for, and of course for giggles, cause I did look pretty silly! lol, trying to lighten up my mood)


The EEG lasted about 30 minutes, and from there, we waited for admitting to get us to a room on the 6th floor, and then wait for the neurologist to come do rounds at the hospital to go over the results of MRI and EEG....More waiting, but at least, the staff on floor 6...AMAZING!!! I cannot even begin to tell you, how kind they were! They made the ER department seem like a torture chamber in comparison!

11am Thursday, The Neuro comes in, and starts off by saying my MRI looked OK, but it should have been a contrast MRI, so may need a repeat....Then went on to talk about the EEG...Apparently, I have been having seizures! Not the typical ones, like grand mal etc...But, I was having them...She had no idea how strong the one I had earlier the night before was, due to the delay in getting EEG done, but even on the 30 min one they did, I was having mini seizures every 3 minutes with NO outward  symptoms....That was a bit shocking to me...I figured they might have seen something if I ever had another episode, but I had NO idea they were going on without my knowledge on a constant basis! It was affecting the part of the brain that controlled my right side, and a few others that deal with memory and speech etc...I was SO tired by that point all I could really comprehend was  SEIZURES!? Status epileptic-us  seizures,  myoclonic  seizures and absent seizures.

She said they would be starting me on Keppera, and ativan and I need a follow up appt with a contrast MRI, and evaluational of how the meds are doing...She also said they would be keeping me over nght again, to observe and see how things go...The rest o the stay was uneventful...Actually pretty relaxing, compared to the night before...The meds they gave me helped me to zonk out and sleep....Poor husband slept in that uncomfy chair that  leaves a crick in the neck, but was a trooper. I was sooo blessed to have him by my side...



The next day came fast, and I was visited by physical and occupational therapy , given some tools to build strength back in my right side...The visited by neuro again, and she explained due to the nature of my seizures they would be reporting me to DMV soon and I will be unable to drive/be licensed safely...It could only be 6 months, could be longer...That was the least of my worries at that moment, but was still hard to hear....She also explained they do not know WHY I am having the seizures, but suspects it may be auto immune triggered based on the other issues I am having with my immune system...So of course follow up with rhumeaologist which I was set to do anyway, and the oncologist for the strange bone pain...Other than that, I was free to go, but need to have someone with me at all times for a while, as i adjust to the medications...

Here is some INFO on KEPPRA and ATIVAN -
Ill just start by saying the side effects are ROUGH! But hopefully will be worth it in the end!

Finally around 1p, Friday afternoon, we were discharged from the hospital, and hubby drove home to meet the parents and my kids who were ecstatic to see me...Since then, its been kind of a blurr...The meds have set in more and I am finding myself exhausted! I can hardly finish 3 paragraphs of this update before passing out for a nap! Yikes!!


So...Basically we have SOME  answers finally! Still have a bit more to figure out in this crazy body of mine, but slowly and surely we will GET THERE....One day, we will Get to the place where there are no more "unknowns", or at least not as MANY!

Next appt is August 7th with Oncology for bone pain, follow up with Neuro on the 11th, then hopefully get my Rhum appt moved up from January, since my ANA keeps rising for SLE etc...Which could have something to do with the seizures etc...All in all, it was a productive week, one I would however, never EVER  like  to revisit again!

On another note...I have spoken to both hospital administrators and will be reporting them to DOH and Joint commission....They will feel my wrath, and hopefully, procedural changes will be made to how they treat people when instances like this arise and the "basic" tests they do comeback normal, yet patient is still not OKAY by any means...The kind of seizures I was having, point black could have KILLED me neuro even said it herself)  had I been left untreated much longer, and it is a tragedy that in this say in age in one of the most wealthy countries there are things like this happening, and some are not so lucky to survive to tell their story or make reports that WILL make a difference...Thankfully my husband and I, STOOD UP and made sure they didn't brush us off again, so I could just go home and DIE...

Tonight, I am thankful for my LIFE, my family, friends, both near and far, and just everything....
as crazy at is sounds, even still, i am struggling with the loss of our babies and the even more impending complexities that could surround us if we EVER tired for another, baring we actually had the money to treat all the other issues that surround that autoimmune/alloimmune preg loss...Now we would have to contend with seizure stuff etc...Its just so unfair, no matter how hard I try, each further medical issue that comes up, keep me further away from EVER being able to try again,and reminds me daily it wont ever happen... and it KILLS me....even knowing my life was at stake, id give anything to give birth to LIFE again...That probably wont ever happen...EVER again..

...For now, I'm trying to focus on the BIG kids ( they are not even close to babies anymore, sadly) and love them the best I can, even though my heart aches for so many reasons right now...Some for the babies that should be here, some for those ill never have again, and mostly because of the failure I am as a mother right now....

I have so much more to say, but this is a novel in itself...so I am signing off for tonight...