Wednesday, August 16, 2017

Even Wonder Woman Showed Up

Photo by Chip Somodevilla

Photo by Evelyn Hockstein

Photo by Ja'Mal Green

Photo by Jill Harms

Photo by Joshua Roberts

(left) Photo by Jill Harms

Photo by Meghan Moriarty

Wednesday, August 9, 2017

That Caprese Salad Though...

Today's Top 5 Wednesday is your top 5 summer activities. These aren't in any specific order except for the first one, it is definitely my favorite. 

Camping and campfires. Summer wouldn't be summer without a camping trip with my whole family, a big fire, drinks, and toasted marshmallows.

Another favorite is going to the beach. I don't necessarily need to go in the water, I just need to put my feet in the sand, smell the salt water, listen to the waves and I would prefer to catch a sunrise or sunset. Both seem to touch my soul in this amazing way that I just don't have words for. I am definitely made to live by the sea.

I don't even have a long nice way to say that I thoroughly enjoy sleeping in. One thing I love the most about summer? Not getting up and getting Haleigh ready for school. Generally, when I work I start later than 8am so I get to lay in a little longer. Sleep -my fav!

SWIMMING!! I am a fish and always have been. Summer time is for swimming. It doesn't matter to me if it is in a pool, a lake, a river, or the ocean. I just want to be in a body of water - floating and swimming!

And last but not least, one of my favorite things in the summertime is enjoying a good salad and a bunch of fruits. Why summertime is when I eat the most like a bird I have no idea, but it is. There's something great about either being outside or inside with the sun shining in and having a large salad or a bowl of fruit. 

What are some of your favorite summertime activities? Let me know in the comments below and maybe you'll see them on the list next time around!

Tuesday, August 8, 2017

Tomorrow Is The Day

     Tomorrow we have another appointment for Haleigh so I wanted to update the situation here up until this point. If you need to catch up here is the first post and the second post about what is going on.
     On July 13th we went back for a follow up with Haleigh's Doctor. He was surprised at how many headaches she is having (despite already being told they were happening every day) and that they hadn't really slowed down with medicating each one. The conversation quickly moved to starting a migraine medication. He told us that there are multiple kinds but two really that come to mind for her. One would increase her appetite "and since she's already at the top of the chart that's not really something we want" (enter huge eye roll and annoyed sigh from me here). The other had fewer side effects but we would need an EKG to make sure all is well with her heart first. If she had a certain kind of heart rhythm she wouldn't be able to take this medicine. He talked about the different types of medicines for a few minutes before I looked at him and asked what happened to us seeing a Neurologist if she was continuing to have these headaches? He said that he felt they were pretty typical migraines and that they could handle them. Which is not at all what we were told previously. He had said that if a medication was going to be given for head stuff they almost always recommended them seeing a neurologist since it is their specialty. I told him that since her headaches were continuing and her demeanor had changed (which they previously ignored as soon as they heard I have a background with migraines) I wanted to see a specialist that specifically dealt with concussions because we thought that this has to do with what happened. He agreed that the concussion is what most likely brought on these 'migraines' and that, of course, the Neurologist
would be a good option but they (at our hospital he has an overhead doctor to talk to) didn't think we would get any other answers than 'she is having migraines' and they most certainly aren't going to do any scans or anything (as if that is what I asked for). I said yes but it is not JUST the headaches she is having, it is how her demeanor has changed. To which I was told by the overhead doctor that I "would be cranky too" if I had headaches every day. That is when I stopped talking because they were choosing not to listen to me. I said I wanted to see a neurologist and we would start medication in the meantime. We decided to go with a low dose of Amitriptyine, as long as her EKG came back fine. While we were sitting waiting for the nurse to come in to do the EKG I explained to Haleigh what was going to be done. Then Tyrone and I talked about how essentially we were appeasing them with giving her medicine and they were doing the same with us by sending a request to the Neurologist.
     Haleigh got the EKG done and everything was fine (as expected). So, her doctor came back in and said we could start the medicine right away, to give it to her at night, right before bed because it could make her really sleepy. He wanted to see her back within a month or so to check in. I made sure our referral was in and we left.
     *EDIT* I want to add in that during this appointment when her Doctor saw that she had refused medicine for some headaches because she thought they were too low for medicine, he said that was awesome. He turned to her and said it was great she knew her body so well and that if she felt it wasn't a big enough headache for medicine she should definitely tell me that. Which is exactly the OPPOSITE of what he said during the last appointment when he told me I needed to medicate her every time to break the cycle. That me not medicating her right away was probably just bringing on worse headaches later on. Yet then told Haleigh it was cool to refuse medicine. To say the least, I was frustrated.
     I don't think I mentioned how much her demeanor has changed in my posts, so let me try to explain a little of what we are dealing with. Haleigh is a fun, sweet kid, who sometimes has a lot of sass. She is so smart and will carry on long conversations with you. She helps me with the kids I watch, she enjoys helping me cook and make sweet tea. She loves to play any type of game but really she loves to dance. She has always been a very easy going child. I'm not saying she's perfect, the kid has some attitude (that she came by quite honestly - haha) but she can most of the time control it or a few minutes in time out will help the situation. Since the second concussion, she gets angry. Like really angry. It is so hard to explain - everything will be fine and then something will upset her. All of a sudden she is IN your face screaming. I call it 'devil screaming' because it's a deep throaty scream. It starts with her going 'no, NO, NO!' then she is screaming. Half the time we have no idea what she is upset over. She will just start screaming. She gets so angry she throws her self at you, gets right in your face, screams on top of her lungs then throws her body around. There have been many times where we will have to catch her so she doesn't throw herself into furniture or stop her head from hitting the floor. The second we touch her (to catch her or stop her from hurting herself) she says we hurt her, that we hit her or pushed her or pinched her. We could tap her and she acts like it is the end of the world. Is she being overly dramatic because of the state she is in or is her skin overly sensitive
 to whatever is going on and that's how it really feels to her? I have no idea. She will come out of these fits as quickly as she goes in them. Sometimes she slowly comes out and sometimes she just snaps out. This picture of her cuddling pooh bear is five minutes after she was standing in my face screaming at me that I hate her, I never listen to her and she's never listening to me, EVER AGAIN! Then she sat down cuddled pooh bear and started watching a movie. Within two minutes of sitting down, she was happy, smiling, and laughing at her movie. Meanwhile, I was still worried that our neighbors were going to call the cops on us. All you can hear is her screaming and it sounds like she's hurt. REALLY hurt. Every once in a while you'll hear us yell back STOP or don't do that because lately she's not just screaming, she's hitting or kicking too. I'm just at a loss. This is not the way my child has always been. This is new and different, really different. It is not that she is just being bad. Most of the time when she comes out of it, she doesn't remember everything that happened. She insists she would never hit us or kick us. She's really sorry and apologizes for what happens but she doesn't really remember it. Recently she told me she just gets SO angry and she can't control it. She doesn't know why she is angry, just that she is. She's always crying that she's bad now and she doesn't know why. We reassure her constantly that she isn't bad - something is going on and we just need to figure it out. There is just so much going on and I just don't know how to put words to it all. It's horrible and heartbreaking. She's such a good girl and then she's someone different.      While we were in NY camping, we got the call from the Neurologist. They gave us an appointment on August 9th (tomorrow). Unfortunately, Tyrone won't be able to go with so I'm going to have to go by myself. So along with all of the above, I need to talk to the Neurologist about this:
     Before we left her last appointment they had told us to continue to keep track of her headaches. We started her medicine that night. After two nights we noticed that about 40-60 minutes after giving her the medicine, she would get up and start a fight with us. She would get up and say we didn't cover her right, or she needed more water, etc and if we talk to her at all she goes into one of her fits. We give her the medicine as she's laying down so it's not like she is playing and then this happens. She's laying down then gets up and starts having a fit. This happens almost every night. While we were camping she fell asleep one night before we could give her the medicine and that is the only night there hasn't been a fight. Most of her headaches lately have been due to having a huge fit, then she needs medicine because she's been screaming for a half an hour and her head is pounding. She doesn't often have headaches during the day, we also haven't been out playing outside either and that was often something that brought on headaches. However, just to note it - every time she is outside and it is sunny her head starts hurting. Other than sunlight, light doesn't seem to bother her.
     Here are the days she's had headaches since the last appointment:
July 14th:
     headache in the afternoon - 20 ml Ibuprofen
July 15th:
     9:50am - advil
July 16th:
     10:50am - went away with rest
     3:45pm - advil
     11:30pm - doesn't want medicine
July 19th:
     afternoon headache - 20 ml Ibuprofen
July 22nd:
     afternooon headache - went away with water and rest
July 23rd:
     afternoon headache - refused medicine. Ended up taking a nap because she got bit by something and needed Benadryl because of a reaction. Woke up with no headache
July 26th:
     2:00pm - headache "is 100%" - 20 ml Ibuprofen
July 27th:
     4:30 pm -  20 ml Ibuprofen
July 28th:
     8:30pm - 20 ml Ibuprofen
July 29th:
     11:30pm - 20 ml Ibuprofen
July 30th:
     1:50 pm - 20 ml Ibuprofen
     10:25 pm - 20 ml Ibuprofen
August 1st:
     10:00pm - headache but wants sleepy time tea and lay down to get rid of it
August 3rd:
     night time headache after fit - 20 ml Ibuprofen
August 4th:
     night time headache after fit - 20 ml Ibuprofen
August 7th:
     night time headache after fit - 20 ml Ibuprofen

     She's had a few days without headaches but she's still having at least three headaches a week. I don't know if this medicine is the right medicine for her but then again I'm not convinced these are migraines.

Keep us in your thoughts and prayers!

Haleigh's 1st Doctor's Appointment

In June I posted my notes and concerns on what was going on with Haleigh here. I forgot to get back on and write an update though.
     Just as I suspected they said 'oh migraines run in your family? I'm sure that's what this is.' So you are telling me my child having a headache every single day for a month is a migraine? They said that the two concussions - they believe the second fall was definitely a concussion - probably caused an early onset of migraines. Her doctor said for the next 2-3 weeks he wanted us to give her medicine
EVERY time she had a headache. He said this because I had said we only give her medicine for headaches she says are really bad, otherwise, we treat with ice and rest. He told us how much medicine to give her and that we were to write down every time she has a headache and how much medicine we give her. I asked if I needed to write down anything else? The food she's eaten, the activity she was doing, where we were, so on and so forth. He said I can but really they just want to see how many headaches and when she is having them. We were told that after the first week or two of doing medicine every time she had a headache, that if she had more than 2-3 headaches a week we would be sent to a neurologist to talk about it more.
     So we set up our appointment for the week before we left for camping (3 weeks from the first appointment) and I wrote down every time she had a headache. I will include the notes I took here:

June 19th:
     1:15pm - 20ml Ibuprofen
     7:53pm - 20 ml Ibuprofen
     9:30pm - ice pack bc head still hurting
     11:50 pm - 20 ml Ibuprofen
June 20th:
     12:20pm - 20 ml Ibuprofen
     3:12pm - coughing fit -head hurts really bad
     10:40pm - 20ml Ibuprofen
June 21st:
     10:15-40pm HUGE tantrum
     10:37pm - pounding headache
     10:42 20 ml Ibuprofen
June 22nd:
     head hurting but forgot to tell me (am)
June 23rd:
     6:29pm - small headache but doesn't want medicine because it is "so small"
     8:15pm - 20 ml ibuprofen
June 24th:
     1:35pm - pain came straight up from toes to skill - sharp pain 20 ml Ibuprofen
     8:18pm - head hurting - not home
     8:50pm - 20 ml Ibuprofen
June 25th:
     forgot to write down time but after we went to the park (PM) 20 ml Ibuprofen
June 26th:
     7:35am 20 ml Ibuprofen
     11:15am - head hurting, threw up
     12:20pm - 20 ml Ibuprofen
     9:33pm - 20 ml Ibuprofen
June 27th:
     3:05pm - 20 ml Ibuprofen
June 28th:
     headache when she got up but didn't tell me right away because she didn't want to take medicine
June 29th:
     1:55pm - 20 ml Ibuprofen
     9:50pm - 20 ml Ibuprofen
July 1st:
     3:58pm - 20 ml Ibuprofen
July 2nd:
     6:05pm - 20 ml Ibuprofen
July 3rd:
     afternoon - 20ml Ibuprofen
July 4th:
     10:38pm - 20 ml Ibuprofen
July 6th:
    10:11am - 20 ml Ibuprofen
     7:00pm - 20 ml Ibuprofen
July 7th:
     11:30pm - she wrote down the time but didn't want medicine so didn't tell me until the next       morning
July 8th:
     9:48pm - 20 ml Ibuprofen
July 9th:
     10:15am - head hurting but not home
     12:30pm - 20 ml Ibuprofen
     10:35pm - 20 ml Ibuprofen
July 10th:
     3:20pm - screaming fit, massive headache but refused medicine
July 11th:
     3:00pm - 20 ml Ibuprofen
July 12th:
     7:00pm - 20 ml Ibuprofen
July 13th:
     12:35pm - head hurting but not home
     1:55pm - 20 ml Ibuprofen

As you can see she only had two days within a three week period of no headaches. There were some days she didn't have medicine because she didn't want it. I am not going to force the medicine down her throat. I talked with her about it and she decided she didn't want it, so she didn't get it. I'm going to split up my entries so my next entry will cover the appointment that followed this and leading up to our next appointment.

Prayers are always appreciated.

Monday, August 7, 2017

There Are Monsters All Around Us

     I just finished Sister's In Sanity by Gayle Forman and I really enjoyed it. This book is about a girl, Brit, whose father has dropped her off at a 'treatment facility for troubled girls.' Little did the father know the facility he was dropping his daughter off to.
     I really enjoyed this book but it brought up memories of a time when I was hospitalized. I wasn't at a place that was at all like this and why I pictured this book taking place there is beyond me. I do not have a lot of memories from where I stayed, although I was there for about a month. I do remember the cinderblock walls in the rooms, the outside yard area, and having to walk to another building (through the yard) to go to 'school.' The two things I remember the most was that there were really young kids there (5ish and up) which made me nervous and I can remember thinking 'oh man this place is a SERIOUS place.' Not that I didn't take it seriously, just that it made me nervous because they obviously handled really difficult cases and it made me wonder how bad off I was to be there. The second thing I remember the most is my therapist and how much I disliked her. Her eyes fluttered which bothered me because I couldn't concentrate on anything she was saying because every time she would blink her eyes would flutter five more times. She also would say to me 'and how does that make you feel?' This question annoys me so much.
     Anyway, this post wasn't so much about how I liked the book (which I did) but how it made me feel. I felt confused and lost. I have been depressed lately and this just reminded me of what I went through as a teen and young adult. I struggled so much and still do some times. There was a song in the book that I just loved.

There are monsters all around us
They can be so hard to see
They don't have fangs, no blood-soaked claws
They look like you and me. 

But we're not defenseless
We're no damsels in distress
Together we can fend off the attack
All we gotta do is watch our backs.

Your body is beautiful how it is
Who you love is nobody's business
We all contemplate life and death
It's the poet who gives these thoughts breath.

The monster is strong, don't be mistaken
It thrives on fear - keeps us isolated
But together we can fend off its attack
All we gotta do is watch our backs.

In your darkest hour
When the fight's made you weary
When you think you've lost your power
When you can't see clearly
When you're ready to surrender
Give in to the black
Look over your shoulder
I've got your back. 

This post was all over the place but that's just how my mind is working right now.

Thursday, August 3, 2017

When You Break It Down

Can you share your life story in just 5 sentences? It took me a while to figure out what to add in and what not to but I think I hit most of the major points:

Nicole was born in NY, to a wonderful mother, Lori. Lori, Nicole, and her younger sister, Angela started a new adventure in Virginia in 1998. After graduating in 2004, Nicole went to college in South Carolina, where she proceeded to meet the man she would one day marry. Nicole and Tyrone moved to Virginia together in 2008 due to her suffering from chronic illnesses and pain. In 2011, they had a little girl named Haleigh, just a few years later in 2016 they had a beautiful wedding and are now living happily ever after!

Share yours with me too in the comments!

Sunday, July 23, 2017

You Ain't Ever Had a Friend Like Me

I came across a writing prompt that I thought would be fun to write about. If a genie magically appeared appeared, what would you ask for (remember no wishing for more wishes)? I'm assuming we get three wishes right?

My 1st wish would be for my Mother to be healthy. No diabetes, no kidney disease, no heart failure, no addiction issues.

My 2nd wish would be for me to be healthy. I thought about this and how to word it. How do I word a wish for me not to have infertility issues, or chronic pain, or a suppressed immune system, or ITP, or IBS. How do I word a wish for me not to be depressed or have anxiety. How do I word a wish for me not to have migraines, or tooth issues, or back problems and arthritis? I guess the easiest way is to say healthy right? Maybe no health issues would be better. I am sure I will have time to figure it out before my genie comes along.

My 3rd wish would be 30 million dollars. Maybe I should ask for 1 billion. Not all for me of course. I would handle my debt and buy us a house. Then I would buy two cute little cottages, one for my mother and one for my grandmother. I'd pay for a maid for both my mother and grandmother so they don't have to worry about having to clean. I would get my sister a house and a car. I would get Tyrone's parents houses. Among a lot of other things I would set up savings accounts for my children, my nieces and nephews, and any of our siblings that may need it.

I think that about covers it all. If you had three wishes what would you wish for?

Wednesday, July 19, 2017

My Top 5 Bookish Buzzwords

     Today's Top 5 subject is your top 5 bookish buzzwords. Not everyone knows what a buzzword is so let me explain that first. A buzzword is a word or a phrase mentioned in a synopsis or description that immediately makes you want to read or buy a book. I have a ton but let me share my top five with you!

I love anything that takes place in Ireland or has the word Irish in the description.

Is it about a cult or compound? I don't know why I am so fascinated by cults but I am!

Does it take place in the summer at a beach house? I'm about that especially if that beach house is on Long Island or Fire Island!

I love me some Chick Lit! Don't you?

Last but not least...crocheting or knitting. Does it take place in a little shop full of fun fibers and gossiping ladies? Yes please!

Make sure to share your bookish buzzwords with me too!

Wednesday, July 12, 2017

Your Hate Is Not Welcome Here

Photo by Eze Amos

Photo by Eze Amos

Photo by Alan Goffinski

Photo by Alan Goffinski

Photo by Alan Goffinski

Photo by Hawes Spencer

Photo by Brandy Cramer
Photo by Brandy Cramer

Photo by Hawes Spencer

Tuesday, July 11, 2017

Renew My Show!

Our entire way of life depends on electricity. So what would happen if it just stopped working? Well, one day, like a switch turned off, the world is suddenly thrust back into the dark ages. Planes fall from the sky, hospitals shut down, and communication is impossible. And without any modern technology, who can tell us why? Now, 15 years later, life is back to what it once was long before the industrial revolution: families living in quiet cul-de-sacs, and when the sun goes down lanterns and candles are lit. Life is slower and sweeter. Or is it? On the fringes of small farming communities, danger lurks. And a young woman's life is dramatically changed when a local militia arrives and kills her father, who mysteriously - and unbeknownst to her - had something to do with the blackout. This brutal encounter sets her and two unlikely companions off on a daring coming-of-age journey to find answers about the past in the hopes of reclaiming the future. Written by NBC Publicity on IMDB

     I have no idea how this show didn't continue. I love it! I am so sad it was canceled! I hold out all the hope that they will see the error of their ways and renew the show. I'm currently watching this show again and I am almost to the end of Season 2 - where I will get my heart broken because it doesn't continue.