ITP

Idiopathic Thrombocytopinia Purpura or for short, ITP: an autoimmune disease of unknown origin in which your body attacks its own platelets. Platelets are what cause your blood to clot. If/when your platelet count gets too low, you start having excessive bruising and/or bleeding and if it's really low you can have spontaneous internal bleeding.

Never heard of it? Neither had I, but I have this disease. It came on after Laura was born. My CBC at her birth was normal but about 1 1/2 months later, my legs and arms were covered with bruises. At first I chalked it up to post-pregnancy hormones and sleep-deprivation clumsiness, but as the bruising got worse, it became harder to write them off as nothing. Finally, I went to my PCP for a full physical and my CBC came back showing very low platelets. I was referred to a hematologist.

I won't bore you with the battery of tests that were run, but there were many. For the last 7 months, I've had blood drawn weekly to check my counts. Last week, I met with my (current) hematologist and because things haven't improved the way he hoped, he wanted to schedule me for a bone marrow biopsy. This is now forcing the issue for me to find a new hematologist who accepts my new insurance because if I don't, the procedure will cost about $2000.00 and that doesn't include the pathology. If I find a doctor in my network, it's a $20.00 co-pay. Sigh...I guess it's time to make some phone calls.

Anyway, every month I sit in the waiting room and glance at the people around me. I know they are dealing with horrible diseases, mostly cancers, and that I should be grateful that my diagnosis is ITP. When we were going through the tests, I couldn't help but worry about some of the diseases and how they would affect my family if I had them. I thought about what it would mean for them to have a sick Mom and wife. Someone who may require hospitalizations, chemotherapy, full time care. I also went to "the dark place" and thought about dying and what it would mean for R and my children to grow up without me. So on many levels, I am grateful that my diagnosis is ITP. But it's still hard. Every week, I drag Joey and Laura to the lab and try as I may to distract him, Joey watches the phlebotomist drawing my blood. He used to have lots of questions, but now he's pretty used to it. I find that, in and of itself, disturbing.

ITP itself is not life-threatening, however, it can be life altering. Things that I always took for granted may now be high risk activities for me: riding my bike, ice skating, playing tennis, skiing, even driving. When my count is low, if I fall or get hit in the head, well, these things could cause a brain bleed. If I need significant dental work or surgery, and my counts are too low, I may need blood transfusions beforehand to make sure my blood will clot so I won't bleed to death. These are extreme examples, but there have been times when my counts have been so low that these are realistic examples for me. It's not all doom and gloom, as there have been other times when my counts have been near normal and even in normal range.

I'm trying to remain positive about it all, but it's hard. There is nothing I can do to change this. Eating better, exersizing more, sleeping more or less-none of these things have any influence on platelet counts. It's very unsettling and somewhat frustrating.

But more than that, I'm mad at my body because I feel like it's failing me, once again.

On Your Mark, Get Set, Go....well, sort of anyway!

Laura's been in PT for gross motor skill delays since she was 4 months old. Well, 8 months came and went and she was showing no interest in getting up on all fours and rocking, let alone crawling. Joey started getting up on all fours and rocking by 4 1/2 months, then right around 9 months, he started crawling. I just assumed all kids would "practice" before learning to crawl, since that was how Joey did it. When Laura wasn't even trying by 9 months, I started getting really worried.

Well, yesterday she got up on all fours, rocked for a moment, moved her arms and legs into a "crawl" and advanced forward. Then she flopped down. She looked at me with the most "I'm so proud of me" grin on her face--I could have just gobbled her up! However, before I had a chance to do anything but smile back, she turned away, re-focused, got up, rocked and had some forward momentum before flopped again. This time, instead of trying again, she got distracted by some fascinating fuzzy on the floor and she moved onto picking that up and putting it into her mouth...

It seems Laura is going to do things her own way at her own pace, which is a good thing. I'm really proud of her and, honestly, relieved that she's nearing this milestone. It won't be long now before she's off and running.

Speaking of running, yesterday I ran for 15 minutes, then walked for 15 minutes PAIN FREE. The jog was slow and ugly, but nonetheless, it was a jog and I'm still pain free today! I'm hopeful that it won't be long before I'm off and running, too.

So, it was a momentous day yesterday for me and my daughter as we both made great strides in moving forward...

The Funk and The Plan

Several times over the past few months, I made lists to help me get out of The Funk, but I realize now that those lists set me up for failure. They were too detailed and put too much pressure on me. My goals were too specific: drop 1 lbs/week, walk every day, do laundry on Mondays, etc. and so when life threw me a curve ball (which, as a Mom with two children, is bound to happen just about every day) and I couldn't accomplish a goal for a specific day, I felt like I had failed. This just perpetuated The Funk.

Now I'm in action mode, again. However, this time The Plan is general. Simple. Basic. It looks like this:

*Start each morning off by asking Hannah, Ryan and Abby to give me strength to face whatever challenges come my way today.

*Stop thinking ahead of myself. Don't waste energy today worrying about what's going to happen tomorrow because inevitably, what I'm worried about isn't what's going to happen anyway.

*Find some projects (that are not cleaning related)

I'm not new to The Plan. It was a tool given to me by my shrink as I dug my way out of the depths of grief after Hannah, Ryan and Abby died, so I thought I would resurrect it and give it a shot now.

Today is day two and while I don't feel magically cured of The Funk, I can tell that my step is a little lighter. And that's a great start.

There's nothing like an old friend to make me take a new look~at myself

I don't dye my hair (although with the grays that are sprouting lately, I'll probably start, soon). I don't spend a lot of money on trendy clothes. I don't often get manicures or pedicures. In fact, the last pedicure I had was the morning of Laura's birth. She's now 9 1/2 months old and sadly, there are still remnants of that polish on the big toe of my right foot. While I like these things, I don't think about them often. I guess that means they aren't really that important to me.

Now, I hope I'm not giving off the impression that I don't take care of myself or care about how I look, because I do. I usually dress in flattering but comfortable outfits and I almost always wear a scent. If R and I are going out, or I'm going out with friends, I enjoy getting dressed up, but my style is much more "my own" than what's "in".

An old roommate called this weekend. She's going to be in town for a few days with her kids and wanted to get together on Tuesday. We haven't seen each other in over a year, so it would be really nice to catch up.

My friend is very chic and stylish. She always sports the "in" hairstyle and wears the latest fashion trends. She's the type who never looks "made up" but always looks like she just stepped out of a salon. When I lived with her, it would baffle me how she could roll out of bed and manage to look good.

So, what was the first thing I did after hanging up the phone? I looked in the mirror and realized I haven't had a haircut in about 3 1/2 months. I'm long overdue, but all the sudden it became an emergency, so I pulled out the phone book to find a place that was open on a Monday. No such luck. Then I started to fret...would I actually be able to get in somewhere before Tuesday morning? I left the phone book on the counter with plans to call places first thing in morning.

After my coffee this morning, I went to get Joey out of bed. He was sleeping unsually late today. When I looked down at my son, I saw that his eyes are weeping, he's feverish and he started coughing. I instantly knew that I wouldn't be seeing my friend this week. I knew the only person I would likely be seeing this week is my son's pediatrician. I also knew that he wouldn't even think twice if I showed up at his office with a ponytail.

So, as Joey ate his breakfast, I put the phone book away. However, I did tell myself that perhaps I'll call tomarow because it's time to get myself a proper haircut...

...Losing My Religion....(R.E.M.)

In the aftermath of Hannah, Ryan and Abby’s' deaths, my relationship with God and my religion fell apart. I struggled to find answers to questions that had no answers and I blamed God-the all powerful, all mighty God that I grew up with-for not letting my babies live. I was lost, sad, angry and confused. I needed to believe in something because I couldn't believe that Hannah, Ryan and Abby were spiritually nothing. That thought was too painful to even consider. And so, I chose to believe that Hannah, Ryan and Abby were with me, spiritually and if I asked them for strength, they would guide me. It felt all wrong that I should be asking them to give me strength. After all, I am their Mom and isn't it a mom's responsibility to guide her children? I felt enormous guilt at having failed them in life and then again in death, but I needed to believe in their spirits and their ability to guide me through my grief to the other side. And I was too angry at God for failing me to even consider turning to Him for comfort.

For a long time, I grappled with the notion of God and what He means to me. I was tired of hearing all the well-meaning comments about God not giving me more than I could handle, or how He needed more angels in heaven. These comments only made me feel angry at the people who said them and the God they believed had the power to do this to me and my babies and to all the other women whom I was meeting who had lost (a) child/ren.

With time, it became clear to me that I could no longer believe in an all controlling God who had the power to decide who will live and who will die. As that belief faded from my core, I let go of the anger I had once felt at God for Hannah, Ryan and Abby’s' deaths. I was able to stop blaming Him because I truly no longer believed that He did this to me or to them. I was then able to pray to Him for the one thing I believe He can give me: strength.

I am fairly comfortable with my relationship with God now. The problem is, I'm not comfortable with religion. We had Joey baptized, but through the ceremony, I felt very uneasy. I felt like a fake and a liar standing at the alter committing to raise my son in a religion that doesn't feel right to me. At my darkest time of need, I felt that the teachings of my religions failed me. Actually, they did worse than fail me, they made me feel like their deaths were my fault, as if I didn't pray hard enough, long enough or strong enough to justify saving them. But, at the same time, we held Hannah, Ryan and Abby's funeral in this very same church and I found enormous comfort in familiarlity of the service and thereadings. And so while my relationship with God is strong, I'm still very confused at the aspect of how religion fits into my life.

I want to take Joey and Laura to Church, but I haven't found one that I feel comfortable in, myself. I'm not so bold as to think that this is something I can teach them on my own, without guidance or support, and I do believe that a lot of what we learn in a formal religious setting can reinforce the values and morals that we teach at home. Of course, the important thing is that I want them to have a relationship with God and an understanding of a larger purpose...

I’m just not sure how to go about it.

The Promise of Daffs...

I love the seasons, all of them. But the warmth, beauty and sunlight of Spring always makes me a cheerier person.

In celebration of the coming of Spring, every March, R and I have a dinner date and go to the flower show. This year, he couldn't make it, so I decided to go during the day, with the kids. I knew Laura would be fine, as she just loves to look at new things and faces, but I was a bit worried about how Joey would do because at almost 3, he's not keen on being buckled into the stroller for long periods of time. However, I figured we'd give it a shot and worse case, we leave early (or they throw us out!).

With Laura strapped into the Baby Bjorn and Joey holding my hand, I bought our tickets. We entered the convention center and were immediately greeted by a huge showing of championship daffodils. The display was breathtaking and I instantly felt lifted. I love daffodils because even though they don't smell, they are a sturdy, bright and happy flower.

We easily traversed through the displays, walking over bridges and through "houses" all of us soaking in the different sights, sounds, colors and smells of "Spring". There were a few minor mishaps-like when I took my eyes off Joey for one minute only to find him climbing the E.P. Henry Paver display, thinking it was his own personal jungle-gym. Or when he walked up the "banks" of a pond to get a closer look at the fish swimming. But for the most part, we all did really well.

When we left, it was cold and raining, but the spirit in my heart was lighter. I know I'm putting a lot of weight on Spring this year-I want it to help pull me out of my funk and move me into a better light-and if our excursion to the Flower Show was any indication of what the Spring will do for my mood, I know I'll be okay.

Layer Upon Layer

Since Hannah, Ryan and Abby died, my resources for dealing with life's bumps keep getting significantly lower. I feel like layer upon layer of struggles have built up over the last few years, and now any time something is even slightly out of alignment in my world, I have a hard time dealing with it.

The most recent thing is a change in our health insurance. None of our doctors accept this new insurance. Not my hematologist, not my daughter's ENT, Audiologist or Physical Therapist, not my children’s pediatrician, my primary care doctor or my foot doctor. Not even our dentist!

And while I know we'll work something out, the very thought of having to deal with all this sends me into a tailspin. 5 years ago, I would have sat down and tackled this problem head on. Now I don't even know where to begin-it completely overwhelms me to even think about it.

And this makes me feel incompetent. And that's an awful feeling.

Thanks Jibboo

When I imagined having children, one thing I often pictured was reading stories at bedtime. I love reading and want to pass this passion onto my children, so I introduced books to both of them as soon as they came home from the hospital.

Laura likes texture books-the kind where she can feel a rabbit's fur or touch an elephant's ear. Her favorites, however, are those that she can cram in her mouth and chew. We don’t do much reading, per se, but she's getting the exposure...

Joey loves his books and through them, he is not only learning new words and ideas, but also the art of negotiation. At night, I will say "Okay Joey, pick out two stories to read before bed" and he inevitably says "No Mommy, 4 stories!" We usually compromise at three, but I admire his efforts in trying to squeeze one more out of me.

As is typical with a toddler, he tends to read the same books over and over again. I readily admit that I'm bored with them long before he is, but I try to muster enthusiasm as I read "Make Way for Ducklings" by Robert McCloskey, for the 7th night in a row.

His current passion is Dr. Seuess's "Oh The Thinks You Can Think". When we get to the page "And what would you do if you met a Jibboo?" we pause and talk about all the things we would do.

We've come up with many, but singing to the Jibboo quickly became the favorite. I'm sure this is because he's realized that by making up 3 or 4 verses of song, he can delay his bedtime by a precious 5 minutes, but I don't mind. At the end of the day, there is nothing sweeter than hearing my son's high pitched voice belting out songs to the imaginary Jibboo.

It makes bedtime stories so much better than I ever imagined they would be. So today, I say a heartfelt thank you to Dr. Seuess...

Jelouse of the Hampster...

For years, I was a runner. Then, when I went through In-Vitro Fertilization, I wasn't allowed to run. Running helps me feel strong and balanced while IVF made me feel crazed and scattered, so it was difficult to stop. However, when I got pregnant with Hannah, Ryan and Abby I was so happy that I didn't care about having to give it up. Everything was going to be worth it and I knew that after the babies were born, I would get back into running again. My energy was focused on doing whatever I could to bring these babies into healthy. I even saw a nutrionist to make sure I was eating all the right things, but it was a triplet pregnancy and so in a short period of time, I gained a lot of weight. One day, my plantar facsia couldn't take it anymore and I developed chronic heal pain.

After Hannah, Ryan and Abby died, I was a mess physically and emotionally. All I wanted to do was run that pain and anger away. After my 6 week post-partum checkup, I came home, laced up and went out for a jog. I didn't get far before I was crippled with pain. I was so bitter that the one thing that might bring me some solace was "taken" from me.

Somehow, in the midst of my grief, I found the wherewithall to call a foot doctor and start physical therapy and ultrasound treatments. I tried cortisone shots and orthodics. Eventually, I was pain-free, but by then, I was back in IVF and wasn't allowed to run anyway.

In the years that followed, I had too many IVF treatments and 2 more stressful pregnancies. During the pregnancies, I wasn't allowd to exersize at all, and so instead, I ate my way through them. I gained 60+ pounds both times, and both times, my foot pain returned. My doctors attributed it to the weight gain and thought that once I was back at a healthy weight, my pain would subside.

Since Laura was born, I have strictly dieted so I could lose weight and fix this problem once and for all. I'm 7 pounds away from my pre-infertility weight, but because of my pain, I can't run. I'm thin but not in shape and I don't feel strong. I am ready to reclaim my passion for running, but no matter what I do, I can't eleviate my pain it's very frustrating. This has been going on for almost 4 1/2 years now.

I feel like a hampster on the wheel: I'm going in circles but not getting anywhere. But, unlike the hampster, I'm not running...