Need to Vent! And. That. Is. All!

Natalie,

I would suggest printing out your comments and taking them with you just so you remember just how you felt/feel, when with a Dr. sometimes we minimalize what we feel. You hit it spot on when you wrote your comments.

All my thoughts are with you!!! Don't wait to talk to your Doctor!

Cindy Ann

Natalie, how did you go with your Doctor?

Natalie, I hope you have had a few better days... And that your talk to your Dr went well?

Hey Natalie - check in time! :dry:

Hey guys! I am so sorry I haven't checked in! I started school on Wednesday and needless to say, I have been EXHAUSTED with a capital E! I have 25 (yes....25) kindergarteners and they are giving me a run for my money! On the bright side, they definitely take my mind off of things and keep me BUSY! Today was day 2 and it was great. I have a good group this year...just a little talkative! I have a feeling my bedtime will be earlier and earlier! Anyways, as for my check in....the news isn't that surprising. I talked to my doctor on Monday about switching my medication from dex to prednisone. Thankfully, she agreed and told me that she doesn't want me feeling that bad! I know this may seem like a shocker, but I have never been happier to take prednisone. It is a night and day difference for me! Last time my platelets tanked, I took prednisone and had zero side effects except for weight gain and the dreaded moon face. I can deal with that. I can't deal with depression, paranoia, ringing ears, and a constant foggy brain, not to mention intense insomnia. My body did not respond well to that drug at all. So, my hema switched me to prednisone and upped the dosage to 40mg. I feel so much better...which is good.

On the other hand, my counts continue to fall, even with an upped prednisone dosage. My number today was 60, down from 77 on Monday. I have opted to try another round or Rituxan. My insurance approved it and I am scheduled to start my treatments next Friday. I am crossing my fingers and praying so hard that it will work a second time and put me in another remission. I was spoiled the first time with 5 years of remission. I can only hope and pray and that it will work again. As you know, my doctor won't make any promises but she claims that "Since I responded so well the first go around, why wouldn't you the second time?" The uncertainty is what drives me crazy. What if it doesn't work? Then what? But, I guess I need to stay positive. It is incredible how absolutely horrible the timing is of all of this. I just had the entire summer off and now that I am back at work I am going to have to ask for 4 days off. I have an great principal who knows about my situation, but it just SUCKS. There is no other way to put it.

I can't help but wonder what went wrong. I have had incredible counts since May 2009. I went in for my 6 month CBC in June and my count was 152 (still great). As a precaution, my hema wanted to recheck in a month. So, one month later, my count was 103. What happened? As I tend to do, I am trying to wrap my brain around what is going wrong. I know it's typical ITP, but why now? I had terrible food poisoning the weekend before the 103 CBC and, coincidentally found out that my sister in law and brother were planning on getting a divorce (this threw me for a loop because they had never had any marital problems on the surface, but apparently there was infidelity involved on her part--and they have 2 1/2 year old twins). This completely stressed me out with worry. Completely out of my control, but when you learn something so devastating it's hard not to perseverate on it. I can't help but think that my constant worrying, coupled with that virus perpetuated things. Am I crazy for thinking this? Add into this mix the very thought of dealing with my ITP and it all just feeds itself, you know? And then on top of it, returning to school after summer break and I am paying the price now---they just continuet to go down, down, down. My hema assured me that my 60 count is safe and that I don't need to worry, especially since I don't manifest any symptoms. I never bruised with a count of 17. However, I did have a horrendous nosebleed---so I'm watching out for that! I am bummed to have to treat, but honestly guys, I just am praying and hoping for a second remission so that I can move on for a little while. My heart and head can't take this stress. I keep reassuring myself that if it doesn't "work" the second time, I will be ok. I am constantly amazed at how many ITPers continue to live their lives with LOW LOW LOW counts. The lowest I've ever been (and I thank God for it every night) is at 17,000 when I was hospitalized and initially diagnosed. I keep telling myself that my count of 60 is good and a lot of people would love to have numbers that high. I just hope the prednisone will keep it steady for now. And, of course, I hope and pray that my body responds well to Rituxan. I must say that 2013 has not been my best year. I am ready for a new start. I am so tired, both mentally and physically. I'm just lucky I have you guys to turn to. Thanks for your continued support. I go back for a CBC on Tuesday to make sure my platelets are steady. I won't be surprised if they aren't. My luck hasn't been too good. I have lowered my standards, though...so I'm ok with it. If all pans out, next Friday marks the first infusion of Rituxan (from my second round). Keep me in your prayers if you don't mind.

Hi Natalie!

I had a dream about being in a room with a bunch of 6 years olds! I drank for 4 days did not sleep for a week! :laugh: You have no idea how brave I think you are!

Stress can mess up a lot of things as well as food poisoning. Hey its just platelets! You will make more! LOL

Natalie, I would suggest that you enroll in a yoga class. You will find many benefits there that I think will help immensely. Body and mind, karma, yin and yang stuff! LOL It works for me! The yoga will probably not directly help your platelet count, but I would bet $100 against a bag of boiled peanuts, that it will help you!

You are sounding better and that makes me happy! How is your husband?

Jeffrey

I'm glad your doc switched your meds.i hope a 2nd round of rituxan will work for you again. Wow 25 kindergarteners.....that is intense. I had 27 2nd graders one year and often wanted to bang my head against the wall. I only have 3 students now since I am now special Ed and it seems like 27. I hope you hAve a great year! I have plenty of silly stories to share if you are ever having a rough day and need a good laugh!


Valerie

Vdeutsch85 wrote: I'm glad your doc switched your meds.i hope a 2nd round of rituxan will work for you again. Wow 25 kindergarteners.....that is intense. I had 27 2nd graders one year and often wanted to bang my head against the wall. I only have 3 students now since I am now special Ed and it seems like 27. I hope you hAve a great year! I have plenty of silly stories to share if you are ever having a rough day and need a good laugh!


Valerie

I like stories!

Natalie,
I've been following your ITP story, too, and understand completely how you feel. I did the Dex pulses (4 days of Dex at 40 mg and then two weeks off). I did this four times and I will have to say that Dex is a lot worse than the Prednisone. I did have a remission--but, honestly, I have never felt the same again! When I would come off the Dex, I could hardly get out of bed. Now I suffer from chronic fatigue--but I just push myself to do what I need to do. It's just that I miss the energetic person I use to be before the Dex.

And I do think the stress could have pushed you out of remission. My doctor believes this theory, too. But, overall, I think you will do fine. Just try not to get yourself to stressed out. I know--it's easier to say than to do!

Natalie - you probably won't figure out what really caused the drop, so thinking about it is just adding more stress. It is what it is, time to now just deal with it, which you are!

I'm glad you're doing better. More than likely, Rituxan will work again. Good luck!

Natalie, Sandy is right. She knows from experience and being on this board for so long and hearing all the stories. None of us really know why we come out of remission. And, a lot of us live with low platelets and do just fine.

I will keep you in my prayers that Rituxan will work again for you. Good luck to you!!

Glad to hear your doctor listened! Hope you are feeling better soon. Here's hoping Rituxan works like it did the first time! That is what I'm hoping to do Rituxan again and have a few years away from ITP.


Saints that is what you all are. I love kids but 25 for that many hours! No wonder your tired!

Natalie

Glad you are back to prednisone, I'm sure you will be feeling a lot better than you were on the dex.

I will be on my last of 4 rituxan next friday when you start your first, so I will be thinking of you. I breezed thru today's infusion, 1/2 hour for premeds, benedryl, hydrocortisone, and Prevacid. Then 3 hours for rituxan starting slow and increasing rate.


Good you are making it thru your first week. I'm sad I am not going to be able to start working next week, but hope to be able to go back in a few weeks.

Guys,
Your comments mean the world to me! You make me feel so much better all the time! I am staying positive and absolutely not letting this get me down. Although none of us like to "treat," we just have to put on our big panties and deal with it. I must say, I feel so so so SO much better weaned off the dex and switched to prednisone. I feel normal...back to my old self for sure. No more crying, no more paranoia. And I must say, my attitude about the whole "treating" thing has improved 10 fold. I am back to my old self and feeling better than ever (even with low platelets!). I had a great day today with my students and have a good feeling about this group. I hate having to leave them for 4 consectutive Fridays, but my principal is super understanding, so I am thankful for that! I am one of THOSE people who absolutely hates missing work. I haven't missed a day since my last bout with ITP....FIVE YEARS AGO! I have tons of sick days banked, but I never use them because I love my job so much. And, honestly, it is MORE WORK not to be there....and stress, too! I have security and trust issues with substitutes...25 five year olds is no JOKE! Jeffrey, I laughed so hard at your comments. That is a general consensus when I tell people that I teach kindergarten. They usually sigh or say, "You are a saint!" I assure you, I have my moments and I am definitely NOT a saint! But, I love what I do and wouldn't want to do anything else. Which is the main reason I shudder and REFUSE to even consider a splenectomy. I would be sick as a dog all the time and not enjoy my job. And that can't happen! And Jeffrey, if it weren't for my low platelets, I would have taken part in my kindergarten team's happy hour celebration today! I was drinking iced tea....BUMMER! Those margaritas looked SO SO GOOD! Anyways, thank you guys for always supporting me, making me "see the light" and taking time to respond to my posts. I really do consider you all my support system. I go back to the doctor on Tuesday for a blood draw and start next Friday! I am ready to get it started! Fingers, legs, toes, and eyes are crossed that it is a success! I will keep you posted!

Natalie, just curious: how much dex were you taking, and how much pred were you switched to?

Hey,
Well....that is tricky because I was being "tapered" off of the dex (ugh...I hate even typing the WORD!) I was started on the pulse--40mg dex for the 4 days. Then the taper started and I was eventually weaned down to 10mg of dex. After speaking with my doctor about the terrible side effects and the depression onset, she readily switched me over to prednisone and I am currently on 40mg of it. My count yesterday was 60,000. My counts on the 4 day dex pulse was....358,000. But, with each taper they dropped like this: 358---277--111---77 (switched to prednisone)---60. So, they continue to go down, but that is always what happens to me with the steroid taper, so I am not surprised. To look on the bright side...I hate the dex drug, but at least I know I can use it as a "rescue" method if I ABSOLUTELY HAD TO. These platelets are just nutso!

Your 10 mg dex was equivalent to 62.5 mg of prednisone (in theory) so 40 mg of prednisone is a moderate step down. There is a biological difference, in that dex has no mineralcorticoid effect and prednisone does. I am wondering if that is the source of the problem for you with dex, or if it is just that your body (individual difference) tolerates them differently. Guess I have more studying to do. Inquiring minds want to know!

Natalie,

Here is my funny story of the day ( remember I work with high functioning children in the autism spectrum.) we have been learning about dinosaurs all week so that has been a constant conversation piece. Well today this one kid says " I know a new type of dinosaur and it's you. you are a Valasaurus and you are an herbivore. I brought leaves in my backpack for your lunch. I guess they are learning something, however they relate to it.

Rob,
Thanks for that insight. I didn't really put two and two together and see that that is a substantial taper...no wonder they went down a bit. I'm actually surprised they didn't drop lower! So, thanks for pointing that out to me!

Valerie, that is hilarious!!!! Sometimes my students say things that make my mouth drop wide open! Most of the time they are SO MUCH SMARTER than I give them credit for!

Here is one of my stories:
Last year I was doing a lesson on equality for Martin Luther King Jr.'s birthday. What I do is I bring two eggs to school--one brown and one white. We talk about what they look like on the outside (different colors) and then we crack them open and talk about what they look like on the inside (the same). This creates the conversation of "We may look different (skin color, etc) , but we are all the same on the inside and we all want the same things--to be loved by one another. Anyways, after the lesson, I had a student (A FIVE YEAR OLD, MIND YOU) who said: "So, we are all like presents. We have different wrapping paper, but on the inside, we are all a special gift." I ALMOST DIED. I could NOT believe the insight of this five year old little girl. I almost started crying! My jaw dropped open. I will use her analogy for as long as I teach. I would have never thought of that on my own---it took the insight of a five year old to see it! Amazing and beautiful! I feel so lucky to be around them (most of the time...wink wink).

Since we are on the subject of teaching (and to give you guys a little look into my other life), I wanted to share with you my teaching blog address. I post funny stories and teaching ideas on there, plus some other tidbits about me. I even have a short little post the has a blurb about my ITP. The address is www.thepolkadottedchirp.blogspot.com . It's nothing fancy, just something I enjoy doing from time to time! If you're ever bored, check it out! :)

Natalie I've been keeping up with you by reading - I remember you and am glad to see you [but wish it was under different circumstances ]. Thank you for sharing the story of the eggs, what a wonderful way to teach that we are all the same. And what a terrific student you have to come up with what she did!

Will check out your blog - I'm sure you have many great stories to tell. My cousin was a school bus driver and I really wish she would write a book about her experiences, they are a riot!

The ironic thing is that brown eggs usually cost more. Go figure!

The story of the five-year-old little girl was touching. What an incredible age to work with!

Rob,
They do! Hahaha! I'll leave that part out of my lesson! And Melinda...my stories are endless. I mean, really, some of the things they have done and said are completely WILD. You wouldn't even believe me if I got started! I am sure the bus drivers hear an ear full, too! I tell parents, "I'll believe half of what they say about you to me if you believe half of what they say about me to you..." If some of them knew what their children told me.....THEY WOULD DIE!

Your Blog is awesome - it shows what a inspiring person you are! I am sure your little "tweethearts" can't wait to go to school each morning.

Just a thought Polka Dots - Petechiae? maybe a little too obsessed :laugh:

Also your way of teaching about equality and your brilliant child that related it to a present - If you don't mind I will use that analogy as well.

Here is to a successful 2nd round of Rituxan

Cindy Ann

Cindy Ann! Thank you so much! Your comments mean so much to me! I do love my "tweethearts!" I NEVER thought about the polka dot--petechiae connection! OMG! How funny! I have been checking for "polka dots" like crazy lately since my count was 60 on Thursday! I haven't found any....yet! Haha! And yes, use that analogy all you want! I never thought of it either! It took a five year old to teach it to the teacher! Thanks for your well wishes! I will keep you posted!
~Natalie

Rob16 wrote: The ironic thing is that brown eggs usually cost more. Go figure!

Do they? Nostalgia time for when I was a child we only ever had white eggs. Brown eggs did indeed cost more. But then the producers started producing more and more brown eggs and now we can't get white eggs at all. How silly that is. It's so superficial. Makes the story seem so much more important somehow. They've changed the colour of eggs to satisfy the customer's prejudices. How ridiculous it is.

I used to work with university students with Aspergers. One guy came in with sutures in the back of his head. On asking him what had happened he explained that he'd told other students that he could fall backwards from standing upright without breaking his fall. They said to do it then. He did and as he was falling he remembered that the last time he'd done this he'd been on a bouncy castle!

Wow that is so awesome!

Today my student said to me you have no kids, no husband, 2 dogs and a good job. All you need now is....l I'm thinking hex going to say husband..,.well he said hot tub.....on the ground laughing.

My mother was a teacher for years. Mostly 3rd grade. As a habit she would write on the board on Fridays "TGIF"! On day on a Thursday she stepped out of the room for just a second and when she returned a little boy had written SHIT. My mom immediately erased it and said just what were thinking? He replied, Mrs, Writtenhouse, Sure Happy It's Thursday!......

that child is probably in Congress now....

Jeffrey

Heard this yesterday - grown daughter texts mother news of successful promotion. Mother replies 'WTF' to which horrified daughter says ' Mum - you can't say that!! , do you know what it means?' Mother replies - 'Wow, That's Fantastic' ! :silly:
mj

Jeffrey - that is hilarious!

Jeffrey, you have a great sense of humor!!