Monday, September 25, 2017

ITP Awareness: Treatments

Is there one treatment that is usually recommended?

An initial course of prednisone (a corticosteroid) is often given to newly diagnosed patients. Prednisone suppresses the immune system. It is hoped that suppressing the immune system will cause the patient’s platelet count to increase and remain elevated after the patient stops taking prednisone. Sometimes a short course of dexamethasone, another corticosteroid, is used instead of prednisone.

There are 5 main treatments for ITP (of course there are others but these are the 5 main go-tos):
- Steroids
- IVIG: a liquid concentrate of antibodies purified from the plasma (the liquid portion of the blood that doesn’t contain red blood cells) of healthy blood donors.
- WinRho: is also a liquid concentrate of antibodies derived from healthy human plasma. However, this medicine is targeted against the Rh factor* on red blood cells. It is thought that WinRho binds to red blood cells to such an extent that the spleen is fully occupied eliminating red blood cells and does not have much opportunity to remove the antibody-coated platelets.
- Chemotherapy Agents (Rituxan): reduces the number of B cells in the body. B cells are a type of white blood cell that, when activated, multiply and produce antibodies. Since Rituxan reduces the number of B cells, it also reduces the number of cells that produce antibodies, including the antibodies that attack platelets, thereby enabling the platelet count to rise. 
- Spleen Removal: The spleen is a large blood filter which, for many people, removes antibody-coated platelets. Theoretically, if the spleen is removed, the platelets will remain in circulation. However, there are other ways the body removes platelets, so this treatment sometimes fails to have a lasting effect.

Some of the side effects of these are:
Steroids: patients may become more irritable, have stomach upsets, sleep disturbances, increased appetite, weight gain, puffy cheeks, frequent urination, sugar in the urine, loss of bone density, or acne. When the medicine is stopped, most side effects will begin to disappear.

IVIG: Some patients treated with IVIg experience nausea and vomiting, headaches or fever and rarely, aseptic meningitis, abnormal blood clots or kidney failure. Many patients are helped by pretreatment with acetaminophen and Benadryl

WinRho: Temporary side effects include fever, headache, chills, nausea and vomiting, anemia, and rarely, kidney failure. Rare cases of intravascular hemolysis (red cell destruction) has been experienced by a small number of patients.

Rituxan: Side effects of Rituxan were reported in 87% of patients. Ten percent of patients reported very serious adverse effects that included fever, chills, weakness, nausea and headaches. Some hypersensitive patients may get serum sickness. Some rare cases of progressive multifocal leukoencephalophathy due to a specific virus have been reported to the FDA.

Spleen Removal: Short-term complications of splenectomy immediately following surgery may include infection, incisional bleeding, deep vein blood clots, pneumonia, incisional hernia, pancreas inflammation, and pulmonary embolism (blood clot that travels to the lungs). While general anesthesia prevents pain during the surgery, there may be incisional pain for several days after surgery. The spleen filters your blood and produces antibodies to help fight infections. 

This was taken directly from PDSA

Wednesday, September 20, 2017

I WILL Like Them!

I have never been able to really get into classics. I want to. I want to read and fall in love with all of the great classics everyone I know loves. So I try one or two a year. So far I am still not a classic book lover but I am trying. So here the Top 5 classics I want to read (and love).

I am one of the five people who has neither seen or read Gone With The Wind. This is one of my Grandmother's favorite books so I want to read it and love it.

"The story is set in Clayton County, Georgia, and Atlanta during the American Civil War and Reconstruction era. It depicts the struggles of young Scarlett O'Hara, the spoiled daughter of a well-to-do plantation owner, who must use every means at her disposal to claw her way out of the poverty she finds herself in after Sherman's March to the Sea. A historical novel, the story is a Bildungsroman or coming-of-age story, with the title taken from a poem written by Ernest Dowson."

This next book is my cousin's favorite book. I have heard her talk about it and quote it for years.
"Armed with only his wits and his cunning, one man recklessly defies the French revolutionaries and rescues scores of innocent men, women, and children from the deadly guillotine. His friends and foes know him only as the Scarlet Pimpernel. But the ruthless French agent Chauvelin is sworn to discover his identity and to hunt him down."

One of my friends named her son after the main character in this book. I feel that that in itself warrants the need to read this book.

"Through circumstances that tend to preclude adult, secondhand description, he leaves his prep school in Pennsylvania and goes underground in New York City for three days. The boy himself is at once too simple and too complex for us to make any final comment about him or his story. Perhaps the safest thing we can say about Holden is that he was born in the world not just strongly attracted to beauty but, almost, hopelessly impaled on it."

The last two books are simply because they sound like books I would really enjoy and they are...

"a startlingly original and haunting novel that creates an imaginary world that is completely
convincing, from the first sentence to the last four words. No one can deny the novel's hold on the imaginations of whole generations, or the power of its admonitions -a power that seems to grow, not lessen, with the passage of time."

"Guy Montag is a fireman. His job is to burn books, which are forbidden, being the source of all discord and unhappiness. Even so, Montag is unhappy; there is discord in his marriage. Are books hidden in his house? The Mechanical Hound of the Fire Department, armed with a lethal hypodermic, escorted by helicopters, is ready to track down those dissidents who defy society to preserve and read books."

    What are some of your favorite classics or classics you want to read? I can always add a few more to my list! Let me know below.

ITP Awareness: 2016 Awareness Video

Did you find my family? We're in there! 

Friday, September 15, 2017

Tuesday, September 12, 2017

Warm, Fuzzy, & Colorful!

Can you tell I'm in the mood to crochet all the things? I have been crocheting non-stop for the last week or so. I am loving all the patterns I am finding! What are you pinning this week on Pinterest? Share with me!

Sunday, September 10, 2017

ITP Awareness: 5 facts

5 facts about ITP

1. ITP is considered chronic if it lasts more than 6 months

2. Acute ITP can occur after ANY viral infection

3. ITP can lower your life expectancy by up to 20 years

4. Fatigue is a common experience for people with ITP. It may be caused by the disease or it could be a response to your medications. 

5. Secondary ITP is associated with other illnesses such as an infection or autoimmune disease, or occur after transfusion or taking certain drugs, for instance cancer drugs.

Wednesday, September 6, 2017

"Got strapped to the roof of the car today for a trip to Starbucks..."



I enjoyed this book but it really messed with my head. I didn't think I would need a trigger warning for this book but I think it just reminded me too much of an experience of mine and has left me in a whole. 

The song she wrote was beautiful and I will definitely print it and put it on my wall!


I really enjoyed this book. I liked having a main character who is fluffy but I hate how much she hates her self, though I guess in high school that's probably how I felt too. The only real complaint I had with this book was the ending. What happened to the kids and the mom? Give me more!


If there was a half star this would be a 4.5 star book. I loved this book. I had no idea where it was all going then I fell asleep one night reading the book and woke up and just knew. I just knew. I couldn't get through it fast enough. I enjoyed Jessica Park's work enough that I will definitely be checking out more books by her.


Do you know how much it kills me to give Jodi Picoult a 2 star. One of those stars is solely because it was a Kindle in-motion book which was gorgeous. This felt like an outline to a book that could be decent. It didn't feel like Picoult's work and I thought it was too short of a short story. I feel lost and like we're missing most of what happened. Maybe like her other shorts this will become a bigger and better book. For now though, I am so disappointed. 


This book had me from as soon as I started it until the very end. Sarah Price is one of my new favorite authors. I cannot wait to pick up another book of hers!

6 books this month, I'm finally back on a good track! How are you guys doing? Did you read anything awesome in August? Please share!

Top 10 Read Authors

Hey there! I have shared before that I follow a lot of Booktubers (People who talk about books in Youtube videos). Well this week, Kristin - Super Space Chick, made a video about her top 10 read authors off of her Goodreads list. I thought that would be a lot of fun to do too so here we go!

My 10th most read author, with 10 books, is Bella Andre. I read two of her series, both having to do with the Sullivan Clan. I don't have a favorite but I really enjoyed this contemporary series and breezed right through it!

My 9th most read author, with 10 books, is Mark Tufo. Again I don't have a favorite but that is because I love all of the books so much I just cannot pick. 
"It was a flu season like no other. With fears of contracting the H1N1 virus running rampant throughout the country, people lined up in droves to try an attain one of the coveted vaccines. What was not known, was the effect this largely untested, rushed to market, inoculation was to have on the unsuspecting throngs. Within days, feverish folk throughout the country convulsed, collapsed and died, only to be re-born. With a taste for brains, blood, and bodies, these modern day zombies scoured the lands for their next meal. Overnight the country became a killing ground for the hordes of zombies that ravaged the land."
If you love books having to do with the zombie apocalypse or even if you don't but love a good wise ass kick butt main character, you have GOT to read this series!

My 8th most read author (though I think this is inaccurate because I am pretty sure I have read more than 11 of her books) is Nora Roberts. I think my favorite series of Nora Roberts is her In The Garden trilogy because it was my very first trilogy of hers. I just absolutely fell in love with her writing and the world she created for us. 

Coming in 7th is Kathleen Brooks with having read 12 books of hers. All of her books that I have read are apart of her Bluegrass series or off series. These cute romantic contemporary books take place in a small southern town. I immersed myself into these books and devoured them within two weeks. They were great! 

The 6th most read author on my Goodreads list is Maggie Sefton. I have read 13 of her knitting mystery series and love every single one of them. These books take place in northern Colorado and center around a cozy little yarn store. Every book there's a new mystery to solve which Kelly Flynn does with the help of her friends by 'sleuthing' around. I always make sure I have a cup of tea or coffee ready when sitting down to read Maggie Sefton's books because I know once I am into it, I will not want to put it down until I am done. 

Half way there!

My 5th most read author is Jamie McGuire. Although most of the 14 books I have read of hers was a part of her Walking Disaster series, which I loved, my favorite book of hers, the one that has stayed with me the longest is Red Hill. "Set against the backdrop of a brilliantly realized apocalyptic world, love somehow finds a way to survive. But what happens when the one you’d die for becomes the one who could destroy you?" This was the first ZA (zombie apocalypse) book I read. She wrote it in a way that didn't leave me with nightmares but wondering what would happen next to the characters I was growing to love. I know this will be a book I'll continue to read over and over again. 

Rachel Caine is my 4th most read author. This is because I have read all 15 of her Morganville Vampire series. I borrowed the first book from my sister in 2012 and didn't get back into the series until a few years later but when I did I finished the series within a month! 

My 3rd most read author is Robyn Carr. As you can tell, I often binge read series and Robyn Carr's Virgin River series was no different. Other than the fact that it contained the most books of any series I have binged yet, with 18 books.
"The Virgin River book series is a series of books based on the fictional town of Virgin River, containing only 600 people.
Believe it or not, there are different characters in every single one of these books! This makes the next book even more exciting than the last. You might find a couple of the same characters in several of the books, but each one contains some new and thrilling people that will change your whole outlook of the series." *
I loved all of the series but I think Wild Man Creek stood out the most to me. Why I'm not sure but it is the one I think about first when I think of the series. I also really enjoyed all of the Christmas books. I love how Virgin River really does up the town for Christmas. 

My 2nd most read author is actually my very favorite author, Jodi Picoult! I've read 20 of her books and I loved EVERY SINGLE ONE! I recommend her books to everyone I talk to. The last book I read of hers was Leaving Time and I think it has become my new favorite book of hers. 
"For over a decade, Jenna Metcalf obsesses on her vanished mom Alice. Jenna searches online rereads journals of the scientist who studied grief among elephants. Two unlikely allies are Serenity Jones, psychic for missing people who doubt her gift, and Virgil Stanhope, jaded PI who originally investigated cases of Alice and her colleague. Hard questions and answers."
I never guess the endings of her books, I try - trust me I try, but I am never right and I think that is part of the reason she is so amazing! 

Here we are.. my number 1 most read author is Janet Evanovich! I have read 49 of her books! Whoa that's a lot! I know at least 27 of those books are her Stephanie Plum mystery series. Stephanie Plum is an average woman who due to her now ex-husbands shenanigans ends up being a bounty hunter. She's not an outrageously good bounty hunter, but a bounty hunter she is. There's a crazy gun wielding grandma, an eccentric best friend who is an ex-hooker, and two (very different) sexy men who would love to call her theirs. I always end up laughing out loud every time I read one of these books. I love them and can't wait for the next one to come out. Hurry up November!

So there are my top 10 read authors, according to Goodreads. What are yours? Feel free to share in the comments below!

Tuesday, September 5, 2017

ITP Awareness: The Basics

You can read a little about my ITP journey here. I was first diagnosed in 2009, my platelets dropped again in 2015, then again (and last time as of right now) in December of 2016. Every single time it was because I was very very sick and my body couldn't keep up and my platelets drop very fast. I can bottom out (less than 10 - which means 10,000) within 24 hours. 

Let's start with what is ITP? *

Idiopathic thrombocytopenic purpura (ITP) is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. People with the disease have too few platelets in the blood.

ITP is sometimes called immune thrombocytopenic purpura or simply, immune thrombocytopenia.

What causes ITP? *

While no one knows the precise cause of ITP at this time, researchers continue to make progress in understanding it and the similarities to other autoimmune diseases. Since ITP can vary greatly between individuals, causes of ITP may also vary.

Current theories suggest that bacteria and virus byproducts, free radical damage (oxidative stress), immune system defects, and intestinal changes all may play a role in the development of ITP. Some cases of ITP can be drug-induced, the result of eating particular foods or may be caused by other diseases.

ITP symptoms can include any of the following: *

Abnormally heavy periods in women
Bleeding into the skin, often around the shins, causing a skin rash that looks like pinpoint red spots (petechial rash)
Easy bruising
Nosebleed or bleeding in the mouth

What are normal blood platelet counts:

150,000 to 450,000 though often you'll hear these number referred to without 'thousand.' For example, when I update my family I usually say my numbers have dropped to below 10 or yay I'm in the 200s. 

Wednesday, August 30, 2017

Plenty of mysteries to unravel, Tons of mistakes to not regret

Top 5 TV Shows

I am going to go with my Top 5 favorite current TV shows. These can change monthly, especially when I am in the mood to binge watch Netflix shows. However, I am going to start out with a show that will always make my top 5 list.

I looked up the summary of NCIS to share: Special Agent Leroy Jethro Gibbs is the leader of a team of special agents belonging to the NCIS (Naval Criminal Investigative Service) Major Case Response Team. That explains NOTHING. I mean it gives the bare essentials but it doesn't share as much as I needed it to. Maybe the last episode's summary will help: Gibbs, McGee and Torres travel to a remote area of Paraguay, controlled by a violent group of rebels, in an attempt to locate a missing Navy Seal who disappeared during an unsanctioned trip. A little better, but I guess no words will really explain how awesome this TV show is. You just have to trust me and watch it. 

The next show, I put off watching because I am a chicken. I am so mad at myself for doing that now because this is a great show!

In this thriller based on James Patterson's best-selling novel stars Jackson Oz, a renegade American
zoologist overseeing safaris in Africa. As he begins to notice animals exhibiting strange behavior, attacks against humans start occurring all over the world. The ferocious assaults accelerate and appear to be cunning -- and coordinated. Jackson races to solve the mystery behind the pandemic and stop it before no place is left for humans to hide. Has anyone ever read the book? I would love to know how the show and book compare.

Next up is a summer favorite. Nothing like a good trashy 'reality' show for summer break, am I right?

Big Brother introduces thirteen strangers who are now living together in a house that is filled with cameras and microphones. They must compete in a series of physical and mental stunts, and some challenging trivia at a chance to win $500,000. This season a past houseguest (and one of my favorites), Paul, is back and controlling the whole house with his 'friendship'. This is one of those shows where you don't think you'll get addicted to than you realize you've succumbed and sucked in all your family and friends as well.

Now for my girl-time show; Haleigh and I use to always watch Girl Meets World together on Friday nights. However, since that has been canceled we had to pick a new show and what better than Tangled: The Series? Tangled is one of favorite Disney movies, so I was really excited when I found out they were turning it into a series.

Set between "Tangled" and its short film "Tangled Ever After," this animated adventure/comedy series unfolds as Rapunzel acquaints herself with her parents, her kingdom and the people of Corona.

Since being freed from Gothel and reunited with her birth parents, King Frederic and Queen Arianna of Corona, Rapunzel adjusts to her life as their daughter and continues to have different misadventures with her boyfriend Eugene Fitzherbert, Pascal the Chameleon, Maximus the Horse, and her new handmaiden Cassandra.

Lastly is a show we all sit down together to watch.

Like many other shows lately, Raven's Home is a spinoff/sequel to That's so Raven that aired from 2003-2007. Raven and Chelsea are now divorced single mothers raising their two separate families in one chaotic, but fun household full of friends. When one of Raven's kids begins to show signs that they have inherited her trait of seeing into the future, the already hectic household gets turned upside down, keeping even Raven on her toes. This is such a funny show. I can't rave enough about how much we love this show as a family.

So that does it. What are some of your current favorite TV shows? What are some of your all time favorite TV shows? Share in the comments or send me a link to your blog if you decide to do the same or similar post!

Also for those who don't know, the title of this entry is part of the lyrics from the Tangled: The Series theme song.

Monday, August 21, 2017

What a Waste of Time

     Two weeks ago we had an appointment with pediatric neurology. I meant to only take a few days after the appointment to decompress then come back and update you guys on what is going on. Then Charlottesville was essentially under attack and again I became overwhelmed so I just stepped away from the computer for a little while. To catch up on past posts having to deal with this: 1 2 3
     I had mixed things about going to our hospital's neurology department. Some people love it and others hate it. I have not had the best experiences with them but I was hopeful that this would be a better experience.
     To say I was nervous was an understatement. However, I prepared by writing down bullet points that I needed to talk about and dates that things happened. Since we were seeing a new doctor I assumed she would want the whole backstory. When she came in, she introduced herself to both of us then said she had read up on everything that had happened but she would like to hear from me what had gone on. So I gave her a rundown of everything and I thoroughly explained her headaches and the episodes she has. As I was explaining what an 'episode' is like for Haleigh, I took out my phone and said "I have a video of her during one of these episodes and I would like to show you. You can see the change in her demeanor and her voice. It is hard to explain until you really see it." To which her response was "I have seen a tantrum before, no need to show me the video. (chuckle)" I tried to explain that this is not a tantrum, I deal with tantrums from all different children all the time, including mine and this is not that. Especially since she is not remembering some (most) of what is going on during the episodes. She just said, "I don't need to see it." Alright, I also mentioned that during these episodes she seems to be hyper sensitive. While she's screaming and throwing herself around, if we touch her at all she says we hit her or pinched her or whatever. I tried to catch her one time so she wouldn't throw herself into the television screen and she was convinced I had pinched her arm. One time she was rolling around, throwing herself on the ground and bumped against my foot and swore I kicked her. Sometimes I just try to soothe her by rubbing her arm and she screams out that it's hurting her. The doctor just kind of looked at me and shook her head. She said that our senses don't work like that. They (senses) can't all of a sudden be super sensitive then stop on the drop of a dime. "She probably is just already in a state so if you touch her she over reacts. It's not really hurting her, she just is saying it is or thinking it is." I wanted to argue this point because when I have a temperature between 99.1 and 99.9 my skin feels like it's on fire. Clothes, blankets, air.. anything that touches my skin hurts and burns. So I completely believe senses can work this way but moving on.
     Then she went on to tell me that she definitely believes that what Haleigh is having are migraines. She asked how often she was having them still - after being on meds for a month, and I took out my planner to show her. She cut me short and said, "I don't need to see that, just give me an estimate." At this point, I was beyond annoyed. I came prepared to talk and share with her what is going on and nothing is being listened to. I told her she was still having headaches most days and we were medicating most of them. She shook her head and told me that medicating more than twice a week would make her body used to the medicine and end up giving her rebound headaches which can be worse. I sighed and said, "okay, so just medicate the bad headaches? Her primary care doctor told us we had to medicate EVERY headache so they didn't have the potential to get worse. We were originally just medicating the worst headaches and were told this was wrong." She kind of clucked her tongue and said that she was the head specialist so I should probably listen to her. Obviously, that was the plan but shouldn't she also know what we were being told by Haleigh's other doctor as well? She then proceeded to tell us that the medicine Haleigh is on takes 4 weeks to start working and 8 weeks to really see a difference. She wants us to start Haleigh on magnesium and B2 (or B4? I can't remember but it is on the paperwork) while also cutting out some foods from her diet. I asked if we should be doing this all at once or should we do it gradually so we can know which is working and which isn't. She said all at once because it doesn't matter really as long as her headaches stop. *sigh* It does actually matter because if I am restricting what she is eating or giving her pills and I don't need to be then I am not going to. However, by this point, I already knew she wasn't listening so I let her continue.
     I continued on and said that 40-60 minutes after Haleigh takes her medicine she gets up and is upset/angry and has an episode. It only didn't happen twice because both those nights she didn't get any of the medication. To which she replied that is "odd" and "not from the medicine." How could it not be from the medicine when she doesn't have the medicine, it doesn't happen, and it only started AFTER we started giving her the medicine. When I questioned her, she told that this medicine has an antidepressant in it so if anything it was going to make her more stable than not, however, she was on such a low dose that really she isn't getting any of that side of the medicine. She then decided she wanted to up the medicine to 10mg (which was what they originally wanted to start her on but then decided to bring it down a bit) and that could possibly help her fall asleep better at night. Okay, here are my issues with this idea: 1. You don't think these problems are from the medicine so why change the dosage. 2. You just said that you can't see the full effect of the medicine until she's been taking it for two months. If that's truly the case why up her medicine until we can see what the effects will be? 3. The number 1 side effect of antidepressants is anger and depression, also, this medicine also has a side effect of deliria so maybe you should read up more on the medication you're giving out.
     After she decided we were going to up Haleigh's medicine a little she did an examination of Haleigh then sat down to end the appointment with us. I wasn't quite done however. Okay, maybe these are migraines had an early onset from the blow to the head. She said that it was most likely she would have migraines as she got older anyway because they are so common in our family. However, nothing about her episodes were addressed. I believe I said "Okay thank you for addressing the headaches however, we haven't really discussed anything about her episodes. What is causing them? What will be done about them? What can stop them?" She kind of sighed, turned towards me and said "Well, that is something you'll have to take her to behavioral health to deal with. I will send in a referral." No, this is not her just being bad or acting out. This started happening RIGHT after the concussion and just about daily after the second concussion. She is forgetting what she is doing, they are getting worse and she's getting violent now. This isn't just she's acting out, she's not remembering what's happening. This IS from the concussion. Another sigh then "Well symptoms from a concussion happen a few weeks to a few months after the incident. Maybe at first, theses outbursts were from the concussion but now it is a learned behavior that just needs to be corrected. Which behavioral health can help you with. You need to just trust me on this. I do a concussion clinic every Friday so I actually know what I am talking about." Okay so, I'm going to completely ignored and I am obviously annoying her. Literally, this was a waste of my time but I figured I would ask one more question. "Can any scans show if there was damage to any lobes? She had two serious concussions within a short time frame and is obviously acting differently and losing memory. Can anything be seen on any type of imaging?" She replied with "Oh we won't do any imaging. We barely do that. It is hard to see and unless she's having seizures or memory loss or something serious changes we wouldn't do one. No definitely no images for Haleigh. That's not an option."
     I didn't cry or scream I just nodded and said sure when she said she would see us in 6 weeks for a follow-up.
     To say I was angry was an understatement. By the time I got to the car I was crying and shaking. I was completely ignored, I wasn't given a chance to show the difference in my child, Haleigh was ignored when she tried to explain what was happening, and to top it off she was annoyed because I dare question what she was saying.
     We will be going to another hospital a little over an hour away to talk with their neurology team. It has been suggested to go to the other local hospital here since it is closer but the further away hospital was recommended to me by two people who have been there for similar reasons and had good experiences. I am hoping that we will meet doctors who will listen to what we have to say. Who will not make me feel like I am a person who wants something to be wrong with their child. I do not want something to be wrong, I want to be listened to and I want all avenues checked instead of being ignored and acting like we are an annoyance.
     Until then, Haleigh will be put on a 504 plan for her headaches, I will go into further details about this once I meet with the school about it. Essentially, Haleigh will have medicine and quiet space readily available for her at school. She is so worried she is going to have an episode like this at school and everyone will just think she is bad and won't know it is because of her headaches. We are worried too but we will just have to take it all as it comes.
      Prayers and well wishes are always appreciated. Thank you all for following this journey with us. I will try to keep you updated the best I can.

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