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TOPIC: I just cry and want to scream--but at who?

I just cry and want to scream--but at who? 9 years 2 months ago #3484

  • teresalopez72
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We're at it for about a month now, and what a roller coaster it is.
29k to 37k to 9k to 20k and today 4000

The hemotologist called today and tomorrow at 8am we have to take Isabella for WinRho. She has had weekly blood work. She just sees a nurse and panics and cries "No!" My heart breaks and I so desperately want to trade places with her.

Another day calling out from work, but I wouldn't be able to focus anyway. I just want to know why and nobody can answer that.

How do you all cope? I'm a mess and feel totally useless. My baby is absolutely beautiful as I'm sure all of your babies are. Why is this happening?

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Re: I just cry and want to scream--but at who? 9 years 1 month ago #3487

  • Ann
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This last weekend I attended the UK ITP patients' conference and the American doctor said that something like 70% of UK children are treated with watch and wait while only 14% of US child patients are teated by watch and wait. So the conclusion is that most of the US children are over treated. Something to think about maybe. Read the International guidelines at bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

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Re: I just cry and want to scream--but at who? 9 years 1 month ago #3494

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Teresa:

I can relate. My daughter does not have ITP and she is not a baby, but she was diagnosed with an autoimmune disorder and I felt like you. I wanted to scream and shake my fists at the sky. It's just not fair. I had a very hard time dealing with the anger, if you want to call it that.

On the positive side, most ITP children are acute, so chances are good that the ITP will eventually resolve. In the meantime, hang in there.

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Re: I just cry and want to scream--but at who? 9 years 1 month ago #3506

  • jpoisson13
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Teresa,
I cried alot. And was paranoid about her counts (mostly in those first 6 months).
Cassie always threw a fit about getting "poked" as well...last time was the first time she didn't cry (after 1.5 years lol). She said to me on the way there "I'm five. I'm going to try not to cry." And my big girl didn't! I was so proud of her. (she gets a finger poke)

The hardest months are those first ones, and the hospital visits are no fun. I had to hold Cass down for half an hour while they tried six times to start an IV the second time she was admitted. When she fell asleep that night, i cried for an hour. maybe three. It all blended together.

There isn't a reason why. But every time i walk into that doctor's office, i'm reminded how "lucky" i am. Some of those parents would give anything to have "just" a blood disorder. For a short ride from the peds to the cancer care center, i was terrified Cassie had luekemia. i'll never forget how that felt. Ever.

So I try and tell myself that. Sometimes it even worked! (now, it totally works, but in the begining it was harder).

You'll get through this, because you have no choice. And eventually, it will just kind of become routine. I think Cassie actually LIKES the hemo's office now...and Bob was 15 months when started going, now he's 3. He thinks it's perfectly normal to sit on a couch next to me while I hold his sister and she gets poked.
What a life we lead, right?
JulieP

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Re:I just cry and want to scream--but at who? 9 years 1 month ago #3509

  • juliannesmom
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Teresa,
You know you can always come here and vent. Thank God, someone understands what the parents of an ITP kid go through. (My family and friends tried, but they really couldn't relate.) For the first few months, I made a lot of unnecessary trips to the grocery store or the drugstore, so I could cry and scream alone in the car. (My kid was almost 13 when diagnosed, so I had to cry away from her and show the strong pleasant face to her.) I prayed for God to take ITP out of her, and give it to me. If I needed to tell her Dad any bad news or stuff from the doctor's office, we walked outside "to look at the shrubbery." We stood in our yard with backs to the house, pretending to discuss what to do with a shrub while I cried and updated him from the doctor's visit. When I wasn't missing work to go to a doctor's visit, I was often walking in with a red teary face. (I was self-employed, so I wasn't going to lose my job, but I wasn't at my most productive.) You will find ways to carry on, because you must. You will find ways to work your life around ITP, and life will still be good even if it's different than the life your friends have. The better news is that, at her age, Isabella is likely to be an acute, brief, case. (But brief is a relative term.) My teen is in remission, but it took over a year to get there. Hang in there, and no that everyone here is supporting you.
Norma

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Re:I just cry and want to scream--but at who? 9 years 1 month ago #3516

  • isaacsmom
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It will get better! The first few months are the worst. My son was diagnosed when he was 3 (in January 2006). I remember feeling so overwhelmed. When it first started he would cry about his blood tests and I would feel awful. I never let him see that I felt awful though. We found that he preferred 1) finger sticks and 2) sitting on my lap. He hated being held down and hated the arm draws. I firmly told him if he behaved then we could do a finger stick and it would be over quickly. If he fought us, then he would need the arm draw. It broke my heart, but he did great! The lab tech also always gave him a couple of little peanut putter cups afterwards. (we always went to the same lab tech because she was so good to him) I recommend finding a little reward for afterwards, whether it is a piece of candy, stickers, or even going to the park. Find something that she likes that will make it a little easier to bear.

In hindsight I wish we wouldn't have had blood tests so frequently. Every week is pretty common, but is overkill I think. Of course in the middle of it I would have gone every day just to know, because I was pretty paranoid. At the time I was living for the number. I would be elated when it was good and devastated when it was bad. I think the biggest problem is not knowing when or if it is going to end.

There is hope. In time it gets easier and it just becomes one more thing that you deal with. My son has had normal counts since he had Rituxan in October 2006. (It took a few months after it, but regardless he has been well for quite a while now.) I will never forget how I felt in the beginning, but I assure you it DOES get better. I remind myself that everyone has struggles. Sometimes they are obvious and sometimes they are not. This was just one of our struggles. We have now moved on to dealing with Tourette's. :-)

Hang in there. Use the people here to lean on. Everyone understands.

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Re:I just cry and want to scream--but at who? 9 years 1 month ago #4228

  • emma1
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It's such a relief hearing you all - I have cried to myself wondering what I did wrong - why my daughter at 14 is diagnosed with ITP. We are new to this as she was diagnosed 4 months ago but her attitude is amazing. All these kids are amazing and it is true that no one understands unless they are going through it as well. So I thank you and salute you all for coping and helping us all to get thru this.

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Re:I just cry and want to scream--but at who? 9 years 1 month ago #4244

  • juliannesmom
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On the subject of finding a way to make the doctor's visits and CBCs better by adding a "treat," my teenager was coddled a bit on that subject. She's a good student, so I let her decide which classes (afternoon or morning) she preferred to miss. I either picked up her favorite Chickfila lunch and she ate it in the car on the way, or we stopped at another favorite spot for lunch before or after. My husband is totally against eating in the car, eating in front of the tv, etc., and complained. I told him, "If she's got to deal with ITP, she gets to eat in the car. No question. No argument." He soon was complying, but only on CBC days. I'm strong in lots of ways, but I'm often a pushover for my kids, and she soon had me dancing to her tune for a while to make her life more pleasant. You can find a way to make those days less awful. Your kid will lead the way to that for you.
Norma

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Re:I just cry and want to scream--but at who? 9 years 1 month ago #4272

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Norma:

That story reminds me of a line from My Big Fat Greek Wedding. "De man is the head of de household, but de woman is de neck and she can turn de head aaaaaannnnyway she wants".

I'm sure being a trial lawyer helps!

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Re:I just cry and want to scream--but at who? 9 years 1 month ago #4298

  • juliannesmom
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Sandi,
The idea is to let him always know that he is in charge, and that THIS is the way he really wants it, and he should have his way. :)
Norma

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Re:I just cry and want to scream--but at who? 9 years 1 month ago #4301

  • ddunn
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I like your way of thinking!!!

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