Sooo... I missed y'all.

[Pixie-elf]

A bunch of insane shit happened to me in the past year and a half. So I was kind of avoiding the board because of paranoia. Not over you guys... I was kind of worried the CDC was watching my Mom and I. (Yeah, I know. Sounds nuts... There are reasons for it though.) I didn't want to bring problems to the board.

Lemme start at the beginning.

My Mom got sick at the end of July 2013. Like, the day I went to have my shunt adjusted. Luckily, the adjustment took properly, and, by the time she had to go in the hospital I was fully capable of going with her. It was August 4th. At midnight. She was so sick, it took her from then until 4am to get ready. August 5th at this point...

So I went, they took her to the back of the E.R. immediately. You know how they always fuck around with us, and leave us out front? I found out, you never want them to take you to the back immediately. It means that there is something bad wrong with you. It means that your vitals have gone wonky and they think you are about to kill the fuck over.

They come in, see Mom in the bed and me beside her and are like "O, hi! What's going on? Why is Mom in the bed when the sickass is Mysti?" and we explained how the day I went to have my shunt adjustment Mom got deathly ill with stomach issues, and what she thought was the flu... They check her for the flu, nope. She was also hallucinating.

They do x-rays and she has pneumonia in one lung, and is being admitted. They also have her hooked up to oxygen and she and I are both looking at it kind of funny, because her sats were at 89 pretty much constantly. That's not exactly great. 3pm rolls around that day so Mom sends my Aunt and I home, to get some things, and to Wal-mart. On our way there, she calls me and tells me they're sending her for a lung scan and moving her to the C.V.I.C.U. Cardiovascular I.C.U.

When I get there, they tell me they're only keeping her for the night, so no. I cannot stay. I'm upset, and so is Mom, but hey, their rules, right?

I go home, sleep, come in the next day and they have her on a bi-pap machine forcing air in her lungs. They are testing her for everything because they don't know what she has other than atypical pneumonia.

The next day, the 7th, when I come in to see her, the nurse and her pulmonologist inform me that they need me to talk to her about voluntarily going on a ventilator. They asked her about it, but she was terrified.

Me, being me, I go in and say "Mama, they want you to go on a vent."

"I don't want to."

"Well, do you want to live?"

"Well, yes, but I'm scared."

"If you wait to go on the vent, it will take longer to get you off of it. They may have to do it anyways..."

"I know this, but I'm terrified."

So I leave the room, after the visit, and ask them if they just want me to go ahead and sign consent forms in case they need to do it. Because I felt like why bother with bullshit? I love my Mom, she wants to live, let's sign this so I can get it done.

They said naw, they'd call later if they had to put her on it. It was all good. They called at 10:30 that night to let me know they had to put her on it, and I told my Aunt that since Mom was now knocked out and no one else was going to be up there, -I- was going to be in the waiting room every day. Someone had to talk to the doctors and no one else in the family was willing to do it.

So I spent the rest of my time harassing the shit out of everyone and making sure they did their jobs. They realized that Mom had Acute Resipratory Distress Syndrome, which, is where your lungs fill with fluid, and basically the only treatment is being on a ventilator until it gets better.

There are other things they can do, but, pretty much that's it. I did research to find out what could be done, what couldn't be done, and what I DIDN'T want them doing to her. I was in there every single visit.

They had her on 6 different mega antibiotics which, of course, caused c-diff. Also none of them treated what she had, which we'll get to later... Her kidneys also went into level 3 acute kidney failure, but they are 100% normal now. Lots of dialysis kept her afloat while things got better.

So, this one day, the infectious disease doctor calls me in, informs me it's something that I have to get my pets out of my house for, leave my house, and basically let the CDC in over. Pretty much REALLY FUCKING SCARY SHIT. I told him that he had to explain this to my Aunt, because, if he didn't, she would not leave, and I was pretty sure she'd end up on a ventilator too. This was the wrong diagnosis, which, I'm not actually putting here cause... If Mom ever finds this she would murder me. Lol.

That was August 17th. I condemned the house, because it had mold, and, hey, taking someone who has had ARDS in to a place that had mold? TERRIBLE IDEA. So we basically moved our pets in with my Aunt. They let us get some stuff out.

It worked out for the best, although I was totally sure Mom would wake up and be like "YOU DID WHAT TO MY HOUSE?" and I was gonna be like "DON'T LEAVE ME IN CHARGE. I BURN ALL THE SHIT DOWN WHEN YOU DO THAT."

So, eventually, I called the contact for the CDC, trying to find out what was going on with our house and some other things, and he informs me that my Mom did not have what the hospital diagnosed her with. False positive. No chance. The CDC tests things at the atomic level... And, well, she did not have it. The hospital had no clue, so as soon as I was done on the phone with him, I ran, called for Mom's nurse, and informed him, that no. You people are treating her for the WRONG THING. The scary thing was, there basically WAS no treatment... just supportive care. So I gave them his number and they got back to figuring out what the hell she had.

Then, later that day, after 10 days of them treating Mom for the c.diff, and no one being able to tell me if she still had it or not, I harassed the fuck out of one of her nurses. I was like "Look, she always has diarrhea. She has IBS with diarrhea. I have never, not seen her, not having diarrhea. You have already given me a misdiagnosis ONCE."

The next time he came in the room he informed me that they would be retesting her. I asked him if they normally do that. He shook his head no, in obvious fear of me. She no longer had it, which mean immunocompromised members other than myself (because I didn't give any fucks, and wasn't scared of c.diff) could come see her again!

Before that point, it had gotten to where all of the nurse knew that I knew exactly what was going on with Mom. They had a habit of telling everyone "The daughter knows EVERYTHING, be prepared for QUESTIONS." because I learned they legally have to tell you everything going on.

Also because I'm curious and should never be given that power.

Around the 30th of August, they found out that she had rickettsia. Rocky Mountain Spotted Fever. Yeah, that stuff you get from ticks. Doxycycline treats it. They started giving it to her, and around this time, they realized that they could lie her flat long enough to preform the trache operation. So September 3rd they gave her the trache and peg. A few days after that she woke up. Before that we really didn't know if she was in there, because the lights were on, and no one was home... She also couldn't move because the disease made her so weak, but I knew she was still in there when I walked in one morning and my Mom smiled at me!! That was the happiest day for me. Once she came around, she would force air past her vocal cords so she could talk... They made me stop her from doing that. Because of the fact that it would strain her. But once they put the speaking valve on she could talk like normal. Before she left the hospital the trache was removed.

The past year and a half has been an uphill battle pretty much, because we had to rehab her at home. She had AETNA for insurance, which, was pretty shitty, come to find out. So as soon as they decided she was well enough, the hospital kicked her out. I've been her caretaker, she had to re-learn to walk after her limbs atrophied and everything... And she's in constant pain. But she's alive. She still has a lot of issues but she fights it every day. She's disabled now because her body and brain just doesn't work like it used to.

When I get sick as hell due to my shunt, and everything else, she takes care of me. We live with my Aunt Tara in Orange Texas right now, which, I can't grow my own medicine because it's the drug capital of Southeast Texas. (No, seriously. If you go a block without finding a meth-head, you aren't in Fruit City.) Also, the Aunt I live with, and her husband, are kind of asshats and probably would not be okay with me growing.

So my solution has been instead, my neurologist has been giving me Botox. It's actually helped! I still get hit, but it's tolerable. I can live with it. Still chronic, but I can deal. It's way milder than it was. I also use a Cefaly. Well, when I remember. I did notice it helped a lot when I remembered to use it daily.

I've thought about all of you so much, and was honestly terrified to come here. It might have been a lot of the fact my PTSD has been kind of a dick here lately. I've tried the DALT, and it is good. I love you guys, and have missed you.

TL:DR: My Mom nearly died. And by nearly died, I mean she was in there for 74 days. 64 were on a ventilator, 30 were on propofol because her vitals were so bad. Oh, and they also didn't know what the fuck she HAD. Her doctor told me it was a MIRACLE that she even survived at all because if you get Rocky Mountain Spotted fever, and they don't treat you in the first 8 days, YOU DIE.

She wasn't treated for the first 30 days.

Because they didn't find it, misdiagnosed her, and I probably should own a hospital. But I didn't give any fucks about it cause I was just thankful she lived.

Also, I kind of need to have both of us treated at that hospital because it's the only Trauma Level 1 around here.

Botox is good, I love it for my clusters, DALT is good, too. I missed y'all.

[CHfather]

Well, I already posted my reaction at your other thread, but I'll say it again -- I am so, so happy to see you back.  Sorry for all you've been through, and are going through, and your mom has gone through and is going through; happy that my feariest fears about your absence weren't correct.

[Pixie-elf]

I'm sorry for not coming and checking in sooner. I really should have. I just recently realized that no, the CDC is not going to come and kidnap Mom.

Or me, probably.

...Probably.

Everything that happened I'm okay with, it's made me a stronger person, and I don't take any crap. We're much better off where we are, than where we were! I'm thankful to just be here, to have something that is working for my head, and to be getting along.

[Bejeeber]

P-Elf / Mysti,

We've missed you too and been thinking about you - A LOT. It seems like it's been forever since your last post, so it is fantastic to see your thoroughly riveting storytelling talents in full force here again, but *stunning* and disturbing to hear about all you (and especially your mom) have been through.  :'(

So glad and relieved that at least your noggin is doing better though! 

[Pixie-elf]

Jeeeeeebs, how are you? <3 I've missed you, too!~

[xxx]

Mystina,

It's been too long...  I've missed you too...  What a jaw dropping chain of events and horror story... I'm so glad you and your mom made it through all the uncertainties and that you're both doing much better.

Shoot me an email if you can find the time...  There's been a lot going on over the last four years...

Hugs,

V/R, Batch

[alleyoop]

Batch, I can't thank you enough for the contributions you are making to these boards.

Bob Bowling  8-)

[ThatHurtsMyHead]

Mysti,

So glad to hear from you.  So sad everything you've been through  :'(

Sending you and your family well wishes.

J

[xxx]

Bob,

Thanks for the kind words...  I've been remiss in not posting more info on the anti-inflammatory regimen here on the boards... Lots of fascinating new data coming from the online survey of CH'ers taking this regimen to prevent their CH as well as data from some of the latest research.

One of the more important topics deals with allergic reactions to pollen, mold and pollutants and how they tend to increase the frequency, severity and duration of our CH...  The insidious nature of allergies is they tend be sub-clinical at first, i.e., no obvious symptoms so we're not aware we're affected until we experience an outbreak of CH, totally out of the blue, shaking up what had been a pleasant pain free existence.

Unless there's a better location, I'll start posting the latest info on the ClusterBuster Files board in the D3 Regimen thread.

Thanks again for the kind words and warm welcome back.

V/R, Batch

[alleyoop]

Unless there's a better location, I'll start posting the latest info on the ClusterBuster Files board in the D3 Regimen thread.

Sounds like the logical choice to me Pete. If you want, I'll make it a 'sticky'.

Thanks again for your advocacy my friend.

[xxx]

Bob,

A sticky would be fantastic...  Sounds like a plan (SLAP).  Thanks.

V/R, Batch

[spiny]

Late to the party Pixie, but really glad to hear from you!!!!!

Thank heavens you were there for your Mom. You saved her life!!!!!!

Hugs!

[Pixie-elf]

Late to the party Pixie, but really glad to hear from you!!!!!

Thank heavens you were there for your Mom. You saved her life!!!!!!

Hugs!

Nah, it wasn't really me. I know it was some higher power, because even the doctors told us it was a miracle. I just helped by being a holy terror. 

Once she was awake and had her speaking valve on, they told her "We tried to make her leave....we couldn't."

I was also totally the troublemaker in the I.C.U. waiting room. If I heard someone was being mistreated, or their family member was, I told them I would take them to the patient advocate, or even better, the NUNS.

If you go to the Nun's in a catholic hospital, they will RUIN whoever is treating your family member, or you, badly. They will make sure it won't happen again.

Also, for everyone who knows someone with insurance issues: Catholic hospitals are a blessing. Mom's AETNA was -THE-WORST-.

It paid for like 2 days of hospitalization. TWO DAYS of being in the hospital.

Catholic hospitals have financial aide for people who need it. This came in handy as Mom's Ventcation as I dubbed it was super expensive. Like, almost 1 million dollars. Disability took care of that. But before they did, it was HOLY SHEEET. The hospital did force AETNA to pay a good bit but... AVOID AETNA. They are JERKS.

I love y'all. <3

[ThatHurtsMyHead]

Mystina,

++++++++ Aetna is the worst......  They're the jerks that decided to stop covering my Oxygen a few years ago.  Thankfully I had a backup.  Glad to hear the hospital did your mom good.

J

[spiny]

I just helped by being a holy terror.Wink

Yeah, that was you!  ;D Right on and way to go.

Agreed about the hospital!!! There are few left actually run by the Sisters unfortunately. I had a month long holiday in one as a teen. Sister found unhealthy conditions in my room when she came by to visit (bed pan on the bedside table). She raised the holy roof on that floor too!!!!! I was never left on the bedpan with no one to take it away again.  Sister speaks and everyone jumps to attention!!! Sisters of Mercy rock in my book. I saw more of them than family and friends combined during my month long stay.

[Pixie-elf]

Sadly the hospital isn't run by the sisters anymore... But there are plenty of 'em in there... And there are quite a few who are nurses.

So I found out exactly who to go to if I needed them. Only after I needed them. The one nurse I SHOULD have turned them loose on I didn't get the chance to. I just made sure the charge nurse knew if she went near my Mom again, I was  going to make heads roll.

The scary thing was, I'm the NICE family member. My Aunt would cuss out doctors, and anyone who pissed her off! LMAO. One doctor told her he didn't have time to explain things to her, because he was super busy, the nurse could... and left. She hunted him down, cussed him out, and went and found an advocate.

My Mom when she woke up was like "They could have thrown her out..."

"Tara didn't give any fecks."

The nurse I took care of with the charge nurse fecked up like... four times. The final straws were we told her flat out that we hadn't let my nephews see Mom on the ventilator because we didn't want to traumatize them.

So, we walk in to the C.V.I.C.U, and Mom's doors are closed at visiting and she stops us and tells us to stop. And we ask what's wrong.

"She's in distress. She's not gonna die, but I don't have a crystal ball so I can't tell you what's gonna happen."

There were 4 kids in there. Not just my 2 nephews, but 2 other little ones, a 4 year old that considered my Mom an aunt. You know the only word they heard was "die."

My cousin turned around and left so she wouldn't hit her.

My Aunt came up there and informed her that if she EVER said anything like that in front of the kids again, they would have a problem.

"SORRY!"

"You're GONNA be sorry when security is dragging BOTH OF US OUT OF HERE when I'm whippin' your ASS!!"

Then, to get Mom out of distress, they gave her versed. Which, even on it, she was BALLING HER FIST UP every time this nurse came near her. She was also still on propofol!

This woman was like "She keeps balling her fist up like she wants to hit me!"

Tara: "....I think she might."

Mom is not the type of person who is naturally violent... So that was it. I was like NOPE. WE'RE DONE.

I also know one of the best cardiac surgeons there flipped out on same nurse for being rude to a patient's family... So basically, after that, we didn't see her again.

Everyone in the ICU loved me because they said they didn't often see patient's families get so involved. Probably everyone except for the nurse who I got in trouble.  I made sure they knew that Mom balled her fist up, the things she said to the kids, etc.

I soooo wish I would have found a Nun.... They'd have made sure she wouldn't have messed with anyone else's families!

This whole thing did make me realize that if I get well enough, I would like to be a social worker in a hospital setting. Because living in the I.C.U. waiting room, I was able to help quite a few people... I'd just need something to get around having to write. They gotta have typewriters or something for that now!

[spiny]

Pixie, you would make an awesome advocate for any hospital patient. 

I never let a family member stay in the hospital without staying there with them. Otherwise, no one protects them from lousy care or asses supposed to take care of them. They get no bath or clean sheets even!!!! 'We don't do that anymore.' Right. The stories I could tell about lousy hospital care would make people cringe, just like the account of your mothers stay.

And you are right. If you had gotten a Sister involved in the mess, heads would have rolled for days.

[Pixie-elf]

Pixie, you would make an awesome advocate for any hospital patient. 

I never let a family member stay in the hospital without staying there with them. Otherwise, no one protects them from lousy care or asses supposed to take care of them. They get no bath or clean sheets even!!!! 'We don't do that anymore.' Right. The stories I could tell about lousy hospital care would make people cringe, just like the account of your mothers stay.

And you are right. If you had gotten a Sister involved in the mess, heads would have rolled for days.

Holy shit!  That's got to be a health code violation of some sort... See, the hospital Mom was at had magnet status in nursing, and they have to pretty much uphold certain standards to keep it. Otherwise, if they don't, they lose funding, and a lot of other stuff. So most of the nurses were good to her and she got a lot of good care, but some had no idea what the hell they were doing.

Also, if they don't do the bathing, or the changing of the sheets, what the hell are they being paid for? I know the aides are supposed to do that kind of stuff usually since the nurses are busy but damn. It's got to be SOMEONE'S job.

[spiny]

Also, if they don't do the bathing, or the changing of the sheets, what the hell are they being paid for? I know the aides are supposed to do that kind of stuff usually since the nurses are busy but damn. It's got to be SOMEONE'S job. 

Yes. It is the CNA's job. Or used to be.

Not anymore. Not in the three hospitals I have dealt with over the last several years. Five days and no clean sheets or bath is what you are expected to accept!!!! >

When I got to my room after back surgery, the aid refused to even help me roll over. The back pad was in place for that, but she absolutely refused to help. After I had just spent 8-9 hours in surgery. Then I was told that I had no 'magic button' as they no longer did that. Then I raised hell. Called my surgeon too. I hurt like the dickens and was getting no where with them. The direct delivery system was set for continuous release of pain med. I was supposed to have the patient button for immediate release of more into my IV when I needed it. She was told not to return to my room and the floor nurse came in and took over. I let them know that I would not be treated that way by anyone and while I was not ambulatory, my husband would raise hell at my request. Also, told her that I would contact the head nurse of the hospital as we had a very good working relationship since the nursing staff f'ed up my 12 year old's pain meds years before. Things rapidly got better, but my back up stayed in the room for the entire stay.

Since then, I have been 'lost' twice after surgery!!!!! My husband breached their sacred doors with 'Where is my wife' both times. Once, I was found in a far room, alone. The other, the head anesthesia doctor was confronted and admitted that the anesthesia nurse had OD'ed three of us with a 5 hour dose 'put you out med' for less than an hour of surgery. He was really angry and had spent the last 4 hours with me keeping me going on the ventilator and additional drugs to keep my lungs clear and me alive. I had to stay in the OR for 5 hours!!!!

Trust them not.  Enough of my trials. As I said, you would make a great advocate for any patient.  8-)

[Pixie-elf]

Also, if they don't do the bathing, or the changing of the sheets, what the hell are they being paid for? I know the aides are supposed to do that kind of stuff usually since the nurses are busy but damn. It's got to be SOMEONE'S job. 

Yes. It is the CNA's job. Or used to be.

Not anymore. Not in the three hospitals I have dealt with over the last several years. Five days and no clean sheets or bath is what you are expected to accept!!!! >

When I got to my room after back surgery, the aid refused to even help me roll over. The back pad was in place for that, but she absolutely refused to help. After I had just spent 8-9 hours in surgery. Then I was told that I had no 'magic button' as they no longer did that. Then I raised hell. Called my surgeon too. I hurt like the dickens and was getting no where with them. The direct delivery system was set for continuous release of pain med. I was supposed to have the patient button for immediate release of more into my IV when I needed it. She was told not to return to my room and the floor nurse came in and took over. I let them know that I would not be treated that way by anyone and while I was not ambulatory, my husband would raise hell at my request. Also, told her that I would contact the head nurse of the hospital as we had a very good working relationship since the nursing staff f'ed up my 12 year old's pain meds years before. Things rapidly got better, but my back up stayed in the room for the entire stay.

Since then, I have been 'lost' twice after surgery!!!!! My husband breached their sacred doors with 'Where is my wife' both times. Once, I was found in a far room, alone. The other, the head anesthesia doctor was confronted and admitted that the anesthesia nurse had OD'ed three of us with a 5 hour dose 'put you out med' for less than an hour of surgery. He was really angry and had spent the last 4 hours with me keeping me going on the ventilator and additional drugs to keep my lungs clear and me alive. I had to stay in the OR for 5 hours!!!!

Trust them not.  Enough of my trials. As I said, you would make a great advocate for any patient.  8-)

HOLY FUUUUUUUUCK.

Can I please go set these people on fire?

LET ME SET THEM ON FIRE. PLEASE LET ME SET THEM ALL ON FIRE. OMG. SO MUCH FIRE. SO MUCH FIRE, ALL OF THE FIRES.

I am so glad you made it out of that okay. Like seriously. SO THANKFUL. That's so scary and horrific!

GIIIIIIIRL, if  they ever try that shit again, threaten to get the NEWS station up in there!

Also, one of our hospitals "lost" an "aunt" of mine while Mom was in the hospital. After her surgery. We were like "How the feck do you LOSE someone?! Like, where are they gonna go? IT'S NOT THAT BIG OF A HOSPITAL?"

You can't misplace people that easily BY GOD. I mean what the HELL man!

We both need to become advocates and burn all of these hospitals down with our anger at them being motherbitches, as my Marcos would say. BURN THEM. BURN THEM HORRIBLY.

RAAAAAAAAAAAAAAAAAAAAAAAAAAGE.

Okay done with rage.

I do have a question, how are Ron and Michael doing, does anyone know?

[alleyoop]

I do have a question, how are Ron and Michael doing, does anyone know?

Damn good question!