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...

Wednesday, July 16, 2014

Mad at the medical world....

I dont get it...

Doctors take an oath when they get certified to practice...It goes something like this....

"Now, as a new doctor, I solemnly promise that I will to the best of my ability serve humanity—caring for the sick, promoting good health, and alleviating pain and suffering.
I recognize that the practice of medicine is a privilege with which comes considerable responsibility and I will not abuse my position.
I will practice medicine with integrity, humility, honesty, and compassion—working with my fellow doctors and other colleagues to meet the needs of my patients.
I shall never intentionally do or administer anything to the overall harm of my patients.
I will not permit considerations of gender, race, religion, political affiliation, sexual orientation, nationality, or social standing to influence my duty of care.
I will oppose policies in breach of human rights and will not participate in them. I will strive to change laws that are contrary to my profession's ethics and will work towards a fairer distribution of health resources.
I will assist my patients to make informed decisions that coincide with their own values and beliefs and will uphold patient confidentiality.
I will recognize the limits of my knowledge and seek to maintain and increase my understanding and skills throughout my professional life. I will acknowledge and try to remedy my own mistakes and honestly assess and respond to those of others.
I will seek to promote the advancement of medical knowledge through teaching and research.
I make this declaration solemnly, freely, and upon my honour."


That is all fine an dandy...Sounds real good on paper and on the day the graduate, but....Tell me...WHY do very few of them ever follow this?? I have been dealing with chronic health issues for a couple years now, and am astounded at how very little they follow this....If anything, they seem to do more HARM than GOOD these days!

So yesterday, I went to the Emergency room department at Loma Linda medical university. I presented with right sided numbness,weakness, in arms legs and face, speech issues,(slurring words, and unable to articulate properly, mixing up words etc) visual disturbances, (flashing lights, loss of vision for period of time and double vision, despite having 20/20 vision on eye exam) and blood pressure of 147 over 105, , pulse 140, also mild chest pains.(mostly due to anxiety because of stoke like symptoms freaking me out).

They triage'd me, did vitals, did a EKG, some basic labs, a quick chest X ray, then sent me back to waiting room...After 2 to 3 hours, I was sent back to a room to review those results with the residents. (new kids just out of med school) They decided to call in attending physician, (The More experienced DR...saw him for maybe 5 minutes) who asked all the same questions I was asked 5 times by 5 different residents, nurses etc. He then  gave me a cocktail of Reglan and bennadryl, saying it "might help" the numbness (they were, without my consent, trying to treat for a complex migraine, but I never had a headache and TOLD them that), and out he went to order a CT scan- meanwhile, I had an adverse reaction to that cocktail that sent me into spinns and almost passed out, and they ignored me...I was so out of it, I was not sure what test was being done for what...They Sent me to CT anyway, (no contrast) and then back to the room I went to wait for 9 hours with NO food or water, or IV fluids, even though I had a line put in, but was never hooked up,only given a cocktail of meds through it...The Attending physician came back in, FINALLY, to tell me "everything is normal, but follow up with Neurology in a week...Nurse came in, ripped out IV and handed me papers...By that time it was 12 hours of being there, and I was still so out of it, I just took their word for it...Little did I know...

First off, after talking over the test results with some trusted nurse friends of mine, I learned they should have done a EEG and MRI (to rule out TIA's and Seizures) with contrast, NOT a CT...But even on the CT report, it says there is a calcification on fornix of brain, which is not normal...Even though they "said" it was "normal" as they gave me my discharge papers....Basically, in a nutshell, they did NOT do their jobs, and pushed me out to open up the bed in the ER...

I am more than ticked off at this point...I spent 12 hours in a hospital getting tests that determined very little concerning the symptoms I was presenting with...I wasted my time, energy, and got an adverse reaction to meds I did not even need, got treated like crap, brushed off, and pushed out, and I have to PAY them for this?! This my friends is the state of our medical system...This hospital is said to be "one of the best in the state"....Really!??

 I beg to differ!

Needless to say, I have an appt set with Neuro on August 11th as of right now, but that's way too long to do a accurate EEG ...Also Need that detailed contrast MRI to really SEE whats going on in there...I will be calling to get a second Neuro appt with a different DR (hopefully THIS week) so things can get rolling faster and tests that SHOULD have been done last night, can get taken care of sooner, to lessen the chance of permanent neurological damage, not to mention a second opinion in this regard is never a bad thing...

I am beside myself at the way things have been handled, and I am just so "done" fighting was seems to be a losing battle to get decent medical care! This  is just acceptable! I don't know how much more of this I can take without totally flipping out on a Doctor...I feeling worm down, defeated, and just plain angry! This should not have been handled this way, and I just don't know how to comprehend how these people sleep at night!?....Ok rant over....

Also, side note, got a call today from PCP's office, to set appt with Oncology, they said it was to get checked out for the severe bone pain I am having in lower legs (both legs, inside of bones). Not sure what tests they plan to do yet, praying for NO bone marrow biopsy and just detailed blood work...I really don't want  to get poked in the bones...
Thats about "it" for now...I am struggling to type and think clearly to articulate exactly what I need to say at this moment, so for now, I  am signing off, and saying goodnight...

Praying for things to fall into place so that this puzzle gets put together sooner rather than later...

Saturday, July 12, 2014

Anxious doesnt even begin to describe what I am feeling right now...

There has been SO much going on in the last week, I don't really know how to start this entry...

I wish I had really awesome news about all the great stuff we have been doing like going to the beach and camping  (we have done a few small local things, tooling around my home town) but instead my body wants to keep me from enjoying this California summer.

I saw my New primary DR, here in cali  on July 2nd, and we went over the reports from the DR's in NY. He ran more blood, did a Xray on chest and neck/head that day as well...He spoke to my husband and I about the referrals he would be sending out ( that day) for the specialists I am to see based on the records I brought and symptoms I was dealing with.

He said I was to see a Rheumatologist, Neurologist and Endocrinologist, gastroenterologist, possibly hematologist and follow up with OBGYN about mass that was seen previously. Those were sent in to the specialists last week, I just had to wait for appt call center to get a hold of me to schedule the appts...Nothing I didnt already know needed to happen before we left NY...

But, then,  I get a call yesterday and they are now ALSO referring me to an Oncologist (referral sent Tuesday 7/8/14)...Nurse would not give details as to WHY...I am still in limbo and kind of freaked out...They just DO NOT send you to a oncologist for NO reason...I am aware it could be "nothing" but again, I have never had anyone I know go to one when it was not warranted...Trying NOT to freak out here...

To make matters worse, I got some calls from appt center, and  I cannot get in to the Rheumey until JANUARY, and Nero late fall, endo late august and OBGYN end of sept.....NO call from Gastro yet, or oncology to see when they want to see me and why/what for...

Also, to top it off, experiencing worsening physical issues, even since the visit with my primary. Bone pain is terrible,( they have me on large doses of hydro's and Valium) and joints are worse as well....Also having issues grasping objects, speech slurring, and I mix up words,( will mean to say "Hun take out the trash" but instead will say "hun take out the cars".... in my head I swear I am saying what  meant to say, it happens many times a day now) have bad short term memory, and also visual disturbances (floaters, stars like things, vision doubling, randomly- eye exam is fine)...As well as, Possibly mini seizures ( lost vision totally, while sitting, and saw strobe light like flashing, and was unable to speak or move for 10 seconds). Never mind the major fatigue, even though my Thyroid is perfect in levels so its not thyroid issues causing that...

Needless to say, I am considering heading to the BIG hospital near me with the next severe episode, and seeing if I cannot bypass some of the testing with specialists that is going to take months to get done due to NO appts being available...This is NOT how I envisioned spending this summer...Not at all....

There was a time last year when the worst thought I could think of was never having another baby, now, I am scared to death I wont get to see the children I DO have grow up, or live a functional life with them and my amazing husband...

My how perspective changes...

 BUT I am thankful for the beautiful California sun, and the ability to have my mom close by through all of this...Its not easy getting ready to turn 30 in a couple weeks, and feeling like I am 60 physically...But I am praying God gives me the grace to get through all of this...

Thursday, July 3, 2014

So much to say...NO energy to get it out....

SO much has happened in the last week, I cannot even begin to describe...The Way God has saw us through every single moment of this move/transition...Simply miraculous...

I plan on TRYING to catch up a little here....

Here is a LINK to my other blog that has tons of pics etc from the cross country drive to CA....
http://megzzramblings.blogspot.com

Other than that, nothing to report, just lots of registering, DMV stuff, school enrollments, and DR appts to go to over the next few weeks...Hoping to have a kick butt 4th of July on Lake Arrowhead, (my mom and I will be singing) ...Here is a little snippet of what we do, we didn't even practice, and I had already had a 21 oz stella...LOL...Def going to practice if I can, the meds they have me on for pain make me loopy as heck...:(







Sunday, June 22, 2014

Trip to Cali -

Those wishing to follow our trip / move from NY to CA I have a link below where I am trying to update as we go along :) 


http://megzzramblings.blogspot.com/2014/06/630-miles.html

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...