Finding Our New Normal.........Again.

Things have been pretty good since I got out of the nut house. We are always adjusting to our life though. A friend of mine was just saying that as special needs parents you get used to one normal and once you are finally adjusted to a new normal then BAM it changes again. Always changing....always adjusting.

With Makily's EEG last week and Allen being off we still aren't on a "regular" schedule.

Monday will be an exciting new start for our family.

Allen has been working over the road as a truck driver for 14 years, 13 of which we have been together. When Makily was born nearly eight years ago we planned on him doing something local instead of over the road. When she was born we had no choice though because there was no way we could have taken a cut in pay OR lose our insurance.

Allen found out on Friday that he is going to be driving locally, meaning only in Florida. He should work basically 5AM to 5PM Mon- Fri and be home EVERY. SINGLE. NIGHT, off on weekends!

Trying to help Daddy fix the TV.


This takes a incredible amount of stress off of Allen as he has fears of what may happen at any time with Makily.........what if he is hours away? I've had to make that phone call a couple of times and believe me, it's never pretty. Then he drives like a bat out of hell all the way home and I worry not only about whatever is going on with Makily at the time but if Allen is in his right mind enough to get here safely. Very Stressful!



I have noticed positive changes in Makily since lowering her dose of Keppra and increasing her Topomax. She picked up a toy that was sitting NEXT to her and put it on her lap to play with it. Typically Makily DOES NOT pick up anything on either side of her TO PLAY with....it usually has to be in her lap. I saw her do it once and then asked her to do it again......and SHE SURE DID. That's progress. That's understanding. This kid is amazing.

Things really have improved in so many ways. I've had many people that have noticed the shift in my mood and how I handle certain things. I'm less hot headed and more patient. I find myself letting things go when before I would have probably made a big deal out of it. I ask myself "Is it really that big of a deal?" If the answer is NO I usually just move on.

I was really worried that people would be judgemental of me when I came out and announced I had been in the nut house. I'm shocked at how much support I have gotten.....that being said I have had a couple of people give me the pitiful eye and say "How are you doing?" like I am going to break out sobbing and spilling my guts at any moment.....okay so maybe they know me more than I thought! lol

My Kelly concert is THIS Thursday. Can't believe how close we are getting.

We went to the Market on the Square today. I found Makily an AWESOME tutu for her birthday party this year. It's ADORABLE. We got some candied jalapenos and some fried plantains too!

We also found this living room set. It was listed for $165 and we ended up talking them down to $130.....LOVE. A. DEAL.



For those local this was at Brother's Keeper down on the Square. They had some really great deals in there today and usually always do.

My grandmother is still having a hard time adjusting to the assisted living facility. Please keep her in your prayers. My mom and sisters are trying to do the best they can for her but she is just not very happy right now and so it's hard on everyone.

Overall I am happier than I have been in years. I have seen so much resolve in the last two weeks that I just know things can only get better. I am going to do another entry about life in the nut house soon. I know a lot of my readers are LOVING that part of my blog. I have tried to vlog but WOW it was bad. I'm gonna work on it a bit more though. I think it has to be spur of the moment rather than me trying to talk about one thing in particular.

We will see.

Home Again, Home Again, Jiggity Jig.

So we are home.

The doctor discharged us and we were out of there in less than 30 minutes.

The nurses were all phenomenal.

Everyone was really friendly.

The Neurologist says that her eye drooping does not correlate to anything abnormal going on in the brain. This is good news. I'm pretty comfortable now assuming that it's just muscle weakness but I will eventually make it over to the eye doctor with her to confirm this. Since it's only prevalent when she is sick or tired I doubt they will do anything about it.



For some reason she stopped having the abnormal brain spikes. She had them on Monday a few times and then NOT ONE on Tuesday. Since she is so sleepy he agreed we should change the medication. I'm nervous but I think it's the best choice. We are going to increase her evening dose of Topomax and slowly DECREASE the Keppra until she is weaned off of it. I'm comforted knowing that we have emergency medication AND that she is on an apnea monitor at night. If something happens we will catch it and can help her. I don't like messing with the medication at all but at this point it's been nearly A YEAR and she's just as tired today as she was back when the initially put her on it. It's just gotten worse. The doctor said by now if that side effect was going away it would have already.



He is going to see her in the office in a month and set up another EEG to make sure the spikes are gone completely and that the increase in Topomax is working.

I have to add this. Her Neurologist was so good to her. He said/sang something in Indian to her. I think it may have been a prayer, whatever it was I thought it was incredibly sweet. Then he picked an eye booger out of her eye with his bare hand and she giggled.



Made me want to hug him.

The only time she cried the entire two days was when they had to remove all the leads from her hair/head. It's left some read marks from all the glue. She cried really loud which she never does. Poor baby girl.

I'M REALLY PISSED OFF YOU GUYS.....NO REALLLLY!


I'm glad part of this mystery is over but I am nervous about the road ahead.

Whatever happens though we will just keep on going.

That's just what WE do.

Raw Thoughts and Sushi.

That is my favorite title I do think.

Every time we have been inpatient there has been at least one other family that we have connected with them. It's almost impossible to NOT connect with each other because let's face it as a special needs parent we are trying always to bring normalcy to our kids. Most people just take "normalcy" for granted. Understand that when I use the word normalcy there really is no such thing, I am talking about the VERY BASIC FUNDAMENTALS FOR LIVING SELF SUFFICIENT ONE DAY. Breathing, eating, SWALLOWING (it still stuns me to this day how difficult mere swallowing can be to an immunodeficient child). I could go on and on about this by I will get to my point.

Today I have taken at least four....maybe five breaks out of this box of a room. Every time I venture out something has made me reach out to people. Say things I wouldn't have said but only would have thought but I said them out loud because I knew it would make the other person happy. And ya now what? It's made me happier.

Please know I realize that makes me sound like Mary freaking Poppins but I assure my dear friends (angel faces as Jenna Marbles would call you)I ain't Mrs. Poppins. (I not so secretly love you Jenna!).

This picture makes me LOL FOR realz.


Don't want to be either. I'm starting to like myself again.

Tonight I went downstairs to get food and kept looking at the sushi, I've never had it. Normally I would have just gotten something familiar. Today I BOUGHT THE SUSHI. As I was going back to the elevators with my food I heard a mother saying "Come on Nicholas....now the elevator is here....". I stood holding the elevator....and holding....and holding......*she didn't ask me to but I'm still holding it lady.....and holding........ANNNNND around the corner comes a little boy barreling towards me. He trips and falls, he even bumped his head pretty hard when he fell. I waited for screaming and crying but it never came. He jumped RIGHT up and said "I'm fine" and got on the elevator with his mom quickly following behind. It was then I realized this boy had cancer (cancer kids break my heart). Initially I thought he was three or four until I heard him talking and saw his face......he was totally bald. He was likely closer to six'ish. He pushed the button for the second floor on the elevator and grinned at me.

I looked at his mom and said :

"Don't you just wanna carry him around and keep him in your pocket and snuggle him?" She grinned and said "OH YES all the time, every day but he doesn't want to be still." I said OH I know all about that I have a little boy. I told her how cute her son was and they got off on the next floor. The other woman in the elevator look on her face that I did. I smiled and said "Ya know I have been in and out of the hospital the last eight years with my daughter and each visit there is usually one kid that stands out and I always will remember....that was that kid....he just made me want to.....

With tears in her eyes she interrupted me and said:

"Carry him around keep him in your pocket and snuggle him forever?"

I looked at her now with tears in my eyes and simply said "Yeah".

The elevator door opened to my floor and as I walked out I heard the lady say

"God Bless you and good night".

Preliminary Partial 48 Hour EEG Results.

The Neurologist just left.

The Neuro examining her.....best pic I could get.


He told me that Makily is still having abnormal brain spikes concentrated in the frontal lobe of the brain (that's where your personality is ..sad face). He says that those brain spikes can spread throughout the brain and cause a seizure but at this point they have not seen any actual seizures.



He was concerned about the eye droop and stared at a photo of the drooping/turning out for quite a while. Then he examined her and stared at her eyes for a while too. She did the eye droop thing in front of him.

RIGHT Eye droop thing.


I expressed my worry about the Keppra keeping her so tired all the time. She's actually regressing and it's horrible for her and TERRIBLE for us to watch. She's always wanting to lay down now. I sit her up and she has figured out how to lay back without hurting herself. This is not normal for her to always want to be laying down. It's been since the start of the Keppra. She's always been sleepy but this is much worse.

The doctor wants to do another day of EEG (today) and then review the results again. He is also going to consult with his team to figure out something to change the Keppra to. He thinks the Topomax is ideal for her since she has done so well on it for so long. She had break through seizures last year though so that is why we added the Keppra.

I'm okay but bummed a little. I was hoping he would say all was fine but I should know better than that when it comes to my "abnormally normal for her little girl."

When I went to take her picture again.........she totally put this in front of her face. bahahahhaha


I love you Makily.

Get That Dirt Off Your Shoulder.

So yesterday blew.

It really wasn't that bad but being in the hospital totally has affected my mood. I cried a lot yesterday. Had panic attack Sunday night and I shook so bad my teeth chattered.

I really thought while it was happening "wow my teeth are chattering....that's impressive."




The nursing staff has been great. Everyone is very professional and friendly. Makily is handling it all well and is having a cartoon and toy fest.



She actually lifted her head on her own here and there for the tech that hooked all the electrodes to her head. She didn't cry for one second. I'm amazed at this child that has matured from screaming the the second they started hooking her up when she was little to seeing her actually do what SHE can to help. She's amazing. Always has been and always will be.



The hospital definitely brings back some scary memories. We are in the peds unit (we have always been in the PICU here so it's a nice change). It's adjacent to the PICU though and the elevator is right in the PICU hall. As soon as I hit that hall I was overwhelmed with memories of her heart cath, how serious it was, how scared we were.....and again how AMAZING she is. Always has been....




Yesterday we had a moment with Jakob that broke my heart. He came in the room and looked at his big sister. She was in a hospital gown (ugh makes me wish even more now I had remembered the pink girly gown I had made for the trip specifically), one of the green ones, on green sheets and with her head all wrapped up to hold the EEG electrodes in place. Jakob looked very sad and said "Mommy, Kily dead.....Kily dead?"

*long pause as I try to fight tears*

"No baby sissy is just sleeping."

Then he got up on her bed and rubbed her leg and said

"Kily night night?"

"Yes baby Kily night, night."

SOB

SOB

I didn't even KNOW that Jakob even knew what "dead" was so the entire comment really upset me. My nephew had asked the same question years ago when Makily was sleeping really hard. He too was relieved Kily was okay and gave her a kiss on her forehead in relief. She's so fair skinned and if she is sleeping hard and catching flies, 'I can see how one would think that, especially a child.



After that conversation I began to wonder if we are somehow scarring Jakob from exposing him to the medical side of all this. I wondered if he is sad that lately Mommy has been gone here and there. My friend Cheryl Paquette shared an entry on her blog written by her daughter Emily. It details her outlook and view on her brother who had a genetic condition that was similar to Makily's. Sadly her brother Bryant passed away after LIVING a full life for 20 years when his parents were told he'd likely die in infancy. Another awesome kid always was......and always will be.



I am still working on vloging. It's harder than I thought because I find myself rambling and wondering if I am just rambling or if I'm interesting or not. LOLOLOL Give me time I'm working on my stage fright okay?! That and every time Allen I watch my tutorial on bib making we both end up hysterically laughing at me. I crack me up with how dingy I can be.

So while yesterday was hard, I am determined for today to be a good day. I brought a "learn to knit kit" and I'm actually gonna try to do that. Another special needs mom of mine will be here today, her daughter is having surgery so keep her in your thoughts. We will be able to keep each other company though so that's nice. My friend Whitney is bringing me dinner tonight too so that's plenty of distraction from anything sad and believe me friends THERE IS LOTS OF SAD at the pediatric hospital. Yesterday while downstairs I saw a woman with a baby on her hip. She was pushing on IV pole and baby was hooked up to two IV pumps and a pulse ox. The reality of that situation was HEAVY. I wanted to hug them both but decided against it. lol

Later on there was a lady with a TEENY baby in his carrier. He had oxygen on his face and was just adorable. I walked by her twice and then had the overwhelming urge to say something to her. I finally did. I just told her how beautiful he was. She told me he had been a 24 week micro preemie. He was seven months and TEEENY. She said he had all sorts of gastro problems as of late and she didn't understand why. He had a g tube also. All the problems she described Makily had been through at that age so I told her what I knew. She looked at me dumbfounded and said "How is it you can give me all this information but the doctors can't?" I jokingly told her I graduated from the medical school of Google. I told her to watch the nurses, ask questions and research EVERYTHING. That's how we got through it. I gave her my number and I hope she uses it. :-)

I got a phone call yesterday that brightened my entire day. It was great chatting even though it was about rectal water, you know who you are and I do hope we can do it again....lol Love you.

So while some of yesterday was emotionally draining it had it's bright spots and I am feeling better today after a good long nice night's sleep. I took a sleeping pill last night and wow did it work like a charm, I usually can't sleep in the hospital....if I do it's fit full.

I love wearing her name.


I'm gonna get up this morning in a little bit and get that dirt off my shoulders and continue trying to be positive.
*WARNING LYRICS.*


I love the new start I have made and I am determined to keep moving forward and leaving old, sad and negative people and things behind. It's hard, it's sad sometimes but DAMN there is just too much living to be done to be so damned depressed.

I am Super Woman you know?




I will leave you all with a G tube Fail photo. Enjoy.

hehee


Love to All,

Trish

The Big Day.

Today Makily and I will head down Orlando to say the night in a hotel. In the morning we will be at Arnold Palmer Children's Hospital to start her 48 hour EEG.



I am a little anxious just about BEING in the hospital with her as it's been quite a while since we have been inpatient. Sometimes that brings on flashbacks from the past and it depresses me. This will be the true test on HOW STRONG I have become and how much my medication works.

The good thing is I have a friend Whitney that is bringing me dinner on Tuesday night and is coming to hang out. That will definitely break the boredom for me and The Princess. My other friend Kiley's daughter Briella is having surgery Tuesday morning so I am sure we will be back and forth in each other's rooms and I'm sure between the both of us we will drive the nurses batty! lol

Everyone is noticing a difference in me. I'm slower to get angry. I'm able to catch myself now and I say "is it really THAT BIG of a deal?" in my head. If the answer is NO then I just say "meh....no biggie." Allen even told me yesterday how much more laid back and cheerful I am. this makes me happy.

I went to a birthday party for a friend yesterday and I was so relaxed and had such a good time. We did karaoke and drank, and ate and had a great time. Jakob ran around like a maniac and Makily enjoyed watching TV and playing with her toys.

My next entry will be the beginning of the video blog I am going to do for this hospital stay. I'm actually kind of excited.

I kind of feel this trip is going to be pivotal for me in so many ways. I want to see what coping skills I have perfected (or not) and I really do want to know what is going on in Makily's brain and if she is having absence seizures like I think. I don't care what kind she is having.....I just want them controlled. PERIOD. They scare the hell out of me.

This is a example of an absence seizure. Makily does something similar but since she can't walk or talk and since they are so vague like you see in the video it's hard to determine.

If anyone wants to come visit call me and let me know. I'll give you a time when we aren't doing anything and you can visit my girl. I'd like to keep this to the people we know or have met personally.

This week will be pivotal for me. It will be pivotal for Makily and her seizure control and care.

I wanted to say how thankful I am for all the comments and for all my blog readers. The maxi pad post got 752 hits in ONE day. I was baffled as it was only getting about 80 hits a day before I started blogging again. I'm going to keep it up. It's helping me in ways I can't even describe. It's therapeutic.

Love to you ALL,

Trish

I love how I look so serious and Jakob is chilling in the background. lol

A TUTORIAL BY MWAH.

I've had requests to do a tutorial for Makily's bibs.

Several months back I started making bibs for Makily. Then I gave some away to ES parents and then they started ordering them.

So here's some kids modeling my bibs........













All of the above children have ES like Makily. Aren't they all SUCH precious angels.?

I had some friends asking me to do a tutorial on how I make the bibs and I decided I would do it. I'm going to VLOG our visit to APH so I figured I' do a tutorial to get my feet wet.

Here it is...how to make really absorbent bibs.

Already Gone and The New Shrink.

So one of the things every therapist has told me since talking is that I need to do things for myself. I do everything for the kids but little for me. When I do I half ass it or do it really cheap because I FEEL AWFUL spending money on me.

Well one thing I had said that I wanted to do THIS year was see THREE concerts. Kelly Clarkson, ADELE and Eminem. Yes I realize I probably will not fit in at the Eminem concert and I likely may be killed BUT alas I digress.

I decided yesterday to look up when they were touring. Adele unfortunately broke her voice last year and cancelled her entire tour to recover from surgery. Bah. Eminem claims that he will never tour again (I GET TO LIVE!).

My Kelly WILL BE IN JACKSONVILLE in just a mere:

13 DAYS!



So I looked at the seating chart and the ticket prices and was excited about maybe getting a seat close enough to actually see (with my glasses that I need to get...and quick) that IT REALLY is Kelly Clarkson up there and not some random person.

I was shocked to see there were several seats up pretty close and then I saw that there were still seats IN THE PIT available.

When I looked at the ticket price though I said no way!

Row 2 PITT CENTER tickets were $145....A PIECE so THAT times two for someone to go with me.

I immediately started looking at other seats farther away because THAT JUST AIN'T ME spending THAT kind of money on a concert....and for MYSELF? NO WAY JOSE.

Then I could hear everyone's comments about my not doing ANYTHING for myself. I do it all for the kids. I don't spend money on me. I need to turn over a new leaf. I want to do things I have never done before. I CRAVE once in a lifetime experiences, but oftentimes don't get them because I just don't want to leave this kids, spend the money...etc etc etc.



So.....I asked Allen what he thought about me going and he said it was a great idea. Then I told him about the seating and ticket prices. He thought for MAYBE 2.5 seconds and said "You are going, GET THE GOOD SEATS."

SOB

SOB

So I did.

I bought two tickets to see my girl Kelly on Feb 2, 2011 in Jacksonville 2nd row center pitt seats.

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!

I am ALREADY GONE in my head about it (incredibly cheesy pun intended). I can't wait to go. I am so grateful to Allen for letting me and not caring about the money. We had some Christmas money left over and I used that so I felt a smidge less guilty about paying that much but I am proud I made myself do it and I JUST CAN'T WAIT!

Let us take a moment and revel in how gorgeous Kelly is in this video. I especially like the dress and necklace she has on in the parts she is laying on the couch. If it were my day for girls she would be my girl crush FO SHO!


On a different note I went to my first appt with my new shrink yesterday morning.

It went WELL.

I do not know her life story or really any personal information about her. Much different than my first and old shrink. LOL

I told her EVERYTHING. It was hard but I just spilled it all. She listened and empathized. I actually had seen her once in the hospital so it was cool that I ended up with her. I didn't think I was going to see her as we had made an appt with someone else in her office but I think she decided to take me on instead.

Either way I don't care.

She encouraged me to continue challenging all my negative thoughts about myself. I do it daily and honestly since I've been doing it, the thoughts are becoming less and less. I'm obviously working on doing things just for me too. I am not the horrible person I had convinced myself I was. I deserve to have some fun and to pamper myself sometimes and Allen is ALL about me doing it.

I had been having trouble sleeping the last several nights. They added an extra half dose of my Effexor at 5pm. Since it's a new dose I was not always taking it right around 5.....I would forget and then take it at like 8 or 9 even. She said I could take it as early as noon instead and I slept SO MUCH better last night. Somehow it was keeping me awake.

She also diagnosed me officially with Anxiety, Depression and PMDD.



I had to laugh when I read that PMDD only affects about 3-8% of women and YET AGAIN I get to fall into that tiny percentage.



Am I talented OR WHAT?

More TMI here but honestly I was admitted to the nut house on Sunday and got my period Wednesday.....so yeah my period makes me crazier than I already am. hooray.

I especially like the "leave town" option.


I personally think doctors need to do something when your tubes are tied to make you NOT have periods anymore.

Just sayin'.

Trish Caldwell, HIPPA Officer and Maxi-Pad Police.

If you hadn't already realized it from reading the title of this entry THIS ONE will be A LOT of TMI.

Read at your discretion.

OH and by the way if you haven't read my last several entries PLEASE refer to the link list entitled "Psych Hospital" on the right.. Things will make more sense that way.

Once I took the Ativan I began to calm about 30 minutes later. I took a nap and was woken at 10 am and told to go to group. I go where they tell me and we sit. No one is there to lead group. We all sit looking blankly at each other. One lady was pretty much catatonic and they set a breakfast tray in front of her. Then walked away.

Not the catatonic lady but a good representation.


The woman just sat there...not eating and no one was feeding her. After about 10 minutes another patient went up to her and tried to feed her. A few moments later a tech came in and yelled at her for doing that and said DON'T FEED HER she's a choking hazard. I immediately wondered why they gave her a breakfast tray then?

I finally went to the desk and asked who was leading group. I was told "Audrey" was. A few moments later Audrey came in. One of the other patients asked her if she was doing group. She said she was not sure but that if she was supposed to be she couldn't because she had a family waiting for her. Then she just walked out leaving the ten psych patients to sit there and wonder what to do. I went to the desk and asked who was leading the group and they didnt seem to know either. I said well if there is no one to lead group I'm going to take a nap. I was told not to do that....someone would be in to lead group. No one ever came until the last five minutes. An orderly came in and basically said to make sure all kept taking our meds even if we felt better.....

blink

blink

Is this what I just went through hell for?

I want my money back.

Anyway, group after that was much better but that particular therapist did it again later in the week except this time she was 20 minutes late, had no topic to go over and wanted us to come up with something to talk about.

blink

blink

#didntrealizeiwasgonnadoherjobforher

#doessheknowmyoldshrink?

That evening I realized I was getting close to CD1. For those confused CD1 is commonly referred to in the infertility world as the first day of your period.

OH GRAND!

I debated about this entry too but when I thought about it rationally I said "Trish you are a 34 year old grown woman.......everyone knows you have a period....get over yourself.

So I did.

Anyway.

I realize I'm going to have to ask the assholes for maxi-pads......


While disturbing I thought this appropriate. A dancing maxi pad. Yes Virginia, you can find ANYTHING on the internet.


ugh.

I get up that morning and actually felt chipper. I put makeup on and did my hair for the first time in a long time. I went to the desk and said to the nurse "I need to speak to a female staff member privately please". She gives me a strange look and says okay. She says to go to my room and wait. #suddenlyifeel10

The bitch comes to my room pulls the door WIDE open and says "What do you need?" In the meantime people are walking by the room door, male staff and patients alike. So I tell her I want to talk to her in private and to please close the door.

She tells me no.

blink

blink

I asked why and she said it was against policy.

I told her I understood why male staff could not close a door with a female patient (as I found out the night before when a male nurse took me into the game room with other patients walking about to go over my entire history and physical I said I want a room with a door and he refused citing "THE POLICY.") but I DID NOT UNDERSTAND why she wouldnt close the door as we were both females.

She reiterated the policy. I told her I was appalled at how BLANTANTLY she was disregarding my right to privacy. She was breaking every HIPPA law there is and THEN some. I went on to say that EVERYONE there had broken confidentiality rules and I did really wonder HOW they got away with it.

With that she said the only OTHER option was to get another female nurse to come in WITH her. I said "That's fine, let's do that." She gives me a SHITTY, smart ass grin and in a CONDESCENDING tone says "Sure I'll get someone for you RIGHT NOW." Then she walked out.

I BECAME LIVID.

I again was shaking and anxious. I couldn't believe how blatantly rude this woman had been to me ALL BECAUSE I simply needed her to get me FREAKING MAXI-PADS and it was the ONLY way I could get them. Believe me if I would have handled it myself I sure as hell wouldn't have bothered that bitch.

After pacing in my room and thinking about it a few more minutes I decided I would go down to the desk. I didn't have a plan of what I was going to do or say. I just knew I had to say something and also REALIZED the good part of being a mental patient in that moment. If I went down there and screamed at her for being the huge bitch she was, they'd just dismiss it because I AM CRAZY YOU KNOW!? I might even get a nice nap from some chemical sedation and a padded room.

WINNING!


When I approached the desk the bitch was standing with her back to me bitching to her co-worker that SHE WAS NOT going in a room alone with me and I just wouldn't listen.

I stood quietly until she turned around and I just shook my head at her and said "I heard everything you JUST said (I hadn't heard everything but I sure wanted her to think I had). You should be ashamed of yourself." Then I asked who the supervisor was. One of the techs said she would be in and he would let her know I need to speak to her in private.

I went back to my room...fuming mad. I paced again and then "Carlton" came in and said the supervisor was ready to talk to me.



I asked if she was going to talk to me in private or not. He said she would.

I got to the desk and she asked if I was Patricia. I said yes and she said follow me and took me into the same room right across from the nurses station WITH NO DOOR.

I stood outside the door, shook my head and then rolled my eyes.

Then I said "What part of PRIVATE do you people not understand.....THIS (and I outlined the missing door frame) room with NO DOOR is the OPPOSITE OF PRIVATE!" (I was really working on that padded room/chemical sedation combo).

Doesn't it look COMFY? lol



She came out of the room and said well we just don't go in a room alone with a patient Ma'am.

sigh


Then she went back to the nurses station while I bitched about how none of them knew what HIPPA was and that I'm shocked no one has ever reported them. A new bitch, (we'll call her Big Flower Head or BFH for short) decides to put her two cents in. Without even looking up from her paper work she says "We just don't go into rooms alone with patients, it's our policy." I said well your policy is against the law. Then she continued to explain...while NOT looking at me and continuing to write, that things have happened in the past and they have to keep staff safe.

At this point I understood her urgent need to keep staff safe because I wanted to jump over the desk and smack her hard enough to make the big flower fly out of her hair.

Okay it wasn't THIS big but it was close.


I told them they all needed training on how to treat patients, then suggested that they should all be on the other side of the desk so they would learn how to treat people. BFH then said "you shouldn't worry about other patients here, you need to worry about you and your recovery."

WHAT?

HUH?

That doesn't even make sense as a reply to what I had just said.

So I said well if you were listening I said YOU NEED TO LEARN HOW TO TREAT PATIENTS, I didnt say I was worried about anyone else.

I finally looked at the other nurse and said "FINE, I guess we'll go in the stupid room with no door and I will whisper my private business to you......you know like we are all in kindergarten."

I walked into the room, shaking and annoyed, looked at the nurse and said "I should be getting my period any second now and I need some damn maxi-pads."

Her entire demeanor softened and she apologized for everyone acting like they were. I honestly had felt like I was back in high school and they were a bunch of mean girls.

She said she would have one of the techs get them for me.

A few minutes later while standing at the desk in line for meds the idiot tech openly handed them to me in front of about 10 people. The next day another tech did it in the hall (you only get two at a time so I had to ask multiple times....SERIOUSLY.)

I wrote the incidents on a patient advocate form and I'm hopeful they do something about the lack of ANY PRIVACY in that place at all.

And YES I realize that I went through all that hell to keep my period quiet....then I blogged it.....so sue me.

So that's my story on how I became a Hippa Officer and yes THE MAXI PAD POLICE.

Turning Tables.

I'm so happy I can't breathe.

Does that make sense what I'm saying?

Today I realized that while I feel better overall, all those things that drove me to where I was are still there. Still in my mind, my heart and my soul. Sometimes I feel the hurt from that creeping in and I've been good about pushing it down and distracting myself. Today was harder for whatever reason, and that's okay. I've learned you can't run from anything. Not from life, not from your feelings and not from love. Those things will ALWAYS be there whether you want them to be or not. Love is NOT ONLY a feeling but a choice you make. It is an emotion and some have it, some don't.



I can't run from the love I have for Makily, it's there in fact deeper than any other feeling I have ever had but that is what makes it frightening because when she is gone....then what? What do I do? I don't know how to be anything anymore except to be Makily and Jakob's mommy.

Example of LUST and NOT love. LMAO!



Anyway.......
I've been printing pics of the kids and Allen and I. I'm working on framing them and putting them up.

I got the CUTEST squeaky shoes for Makily off ebay this week. I want a pair for myself they are so cute...lol. I just ordered her some bows too.


She got the darker pink pair.



If you noticed from last night pictures Allen cut Makily's hair while Mommy was in the nut house. So when Mommy got home she was shocked that baby girl's hair was substantially shorter and rather unevenly cut. She has layers people. He put it in a high pony tail and then snipped ABOVE the rubber band.....sigh.

She's gorgeous no matter what though.


My friend Debra called me today and asked me to collaborate in writing a book. I was honored when she asked and almost immediately said YES before she had the question out.

Debra and her boys Wesley and Memphis.


Allen and others have totally been encouraging me for YEARS to write a book and so I'm actually excited about having someone to do it with. It sounds like such daunting task so when you have help and someone with some experience it makes it more attainable I guess. The book is going to tell "the good the bad and the ugly" of special needs parenting. I will leave it at that. But as we put that together I will update everyone.

Makily's 48 hour EEG is on Monday morning. I am taking Makily up Sunday and will be staying overnight in Kissimmee in a hotel. This way I don't have a far drive in the morning and we can have a mommy/daughter trip. I'm actually REALLY excited about having this time with her alone even if it's for an EEG. sigh. I'm also excited about VLOG'ing the trip. I've never done that before and this trip in particular is a good one to start with seeings as we aren't in an emergent or life threatening situation.

Makily with post EEG/Sleep Study Hair.


I'm going to start an entry about more on my experiences at the nut house tonight.

The kids go back to school tomorrow so it will be nice to start to get into a routine again. I am going to try to start jogging again in the morning. I always feel better when I do that.

I just realized I should have taken my afternoon meds three hours ago. Whoops. I got up and took it but I think that's why I'm having trouble sleeping?

I realize today that my head is all over the place. My life has changed so much in the past three months and sometimes I feel like my head is spinning trying to keep up.

On another note both the kids have been incredibly sweet since I came home. Jakob still has his moments but I can't complain for the most part.