I want to take a shower.

Really, I want to take a long, hot bath -- one that doesn't resemble an awkward, lukewarm bullride. I truly love my PICC Line, and highly recommend them for anyone with a blood disorder (don't be scared of them, they are worth it). But man, I have to hold my right arm straight up to the sky the entire time I take what I call a *monkey-bath* -- it's a shallow, warm bath where I do a lot of light, soapy scrubbing (note to those with aplastic anemia, scratch yourself and you'll remember that you forgot your blood doesn't clot properly).

Boy. When it came to washing my hair at home for the first time after the hospital treatments (which was all I could blurrily think of those last two days of seven - bathbathbath. It wasn't vanity, it was necessity and respect for everyone within short distance of me.) Oh man, I got it All Wrong, getting my PICC Line dressing soaked, my insertion point burned and bled, scaring the ever-living hell out of me emotionally for the first time that I was never, ever going to get better. My poor mom -- she is a saint for taking care of me. I bawled like a baby as she reapplied my dressing, and slowly my PICC Line point healed again. But, it was real to me then.

So if you are googling by, trying to learn more about ITP and aplastic anemia, note this: Find a good doctor you trust (email me if you need to know the exceptional one I use), take your PICC Line, take your treatments, take your medicines religiously, and I will tell you -- things will get better, day-by-day. Oh, you won't think so, but they do. Any illness is a physical and emotional thing. Take care of your emotions, and you can climb mountains. You have to learn and relearn so many daily things you take for granted, don't give up.

For example, today I had to double my cyclosporin dosage, and it sucker-punched me, hard. Grabbed me by the throat, physically and emotionally, and made me remember, "Oh yeah, I remember this burn, this fear, this attack." Took me back to scared mode, one month ago, when I thought I'd never feel good again. But I do, and that burn means it's working. Or going to -- believe that it will work, take that punch.

Especially if you take the treatment ATGam and cyclosporine -- if you have general questions, feel free to email me. If nothing else from my experience, I'll give you tips I found like "tell them to give you Protonix before you begin taking cyclosporin caplets." You can read some fairly hopeless internet submissions on your blood disorder if you are researching, but don't listen. This is something curable. But it takes time.

Anyway, back to bubbly thoughts: I would love to submerge my arm and take those long hot baths I lived for. With bath bombs and bubbles and books. But that is more than just the smallest problem in the world. Everytime I reach up with that straight arm, I think about it this way: we are so fortunate to have a treatment for aplastic anemia. Even though it's hard waiting to see when I'll start making platelets again, so far, not yet. But my body has never been healthier and *rebooted* of any toxin (shoot, cheap red wine was about the most toxic thing I had in it). I finally asked my mother what happens if I don't make platelets again. She straightened her shoulders and said, "We try something else."

My point is: Like life, I try not to focus on what doesn't work, and focus on what does. I focus on how fortunate my life has become with treatment and transfusions to reboot from the inside-out with a new body and evolving new life and mind. As will yours, my life now revolves around numbers -- times to take pills religiously, platelet counts, days between doctor's visits, and medical costs. But the pros outweigh the cons. Remember, with aplastic anemia of this type, you have to live from the inside-out to rebuild. So, the best thing you can do while you are healing is give yourself mental peace, however you can. ITP-related disorders like mine and others can be set off by stress, I have read. And, I can tell you, I absolutely know it contributed to my case.

If I can say anything positive to help you out with any of my experience so far with ITP, aplastic anemia and any amateur research I'm doing regarding nutrition and other factors that may help you, again, email me. If I don't write back fairly quickly, I am probably in the bath, reaching my hand straight up to the sky where it belongs.

(Or, I'm researching nutritious recipes and products for you to try. Those are coming soon.)

Stained-glass windows

With this sickness thing, with any sickness thing, or even on a normal day, sometimes, you just want to get away from yourself. But you live there. Grab a mirror, and look into your eyes, right into them. Odds are, you might've forgotten what color they really are, and say "Look, I know you're in there. I see you, the last part of a body that sparkles. What can I do for you? Anything you want. Because you won't be like this forever."And then do it. Pat your face with a warm cloth or cold, and take a breath. Someone inside is pulling for you. And someone outside is pulling for you, too. Don't forget, you heal. It just feels like forever. And then, I personally like to finish it off with a little cookie. Or best idea yet, nap. Dream.

Always Remember to Never Forget

In remembrance of Martin Luther King, JR -- he had a dream. He still has one, I know it. Keep it alive.

Today's Obvious Suggestion but: Get a book and write things down. When you feel good, when you feel bad, journal it down when you feel the urge or sometimes not. Scribble. Exercise your hands. It's yours to do with whatever you want. Make it simple. Thank people. Thank your God, pick one out, try one on, contemplate another's religious and spiritual views, thank the powers of good that heal. Thank Nature for its endless cycle of renewal.

Ok, here's one for you: Think about planted bulbs, flowers, and trees, and how they die off, dropping all leaves, looking so helpless and gone, but inside, they are resting, getting ready to burst forth again, then take your breath away in the warm, sunny spring with that beautiful neon green, budding with new leaves and flowers gently lifting themselves higher to the warm sunshine of Spring. And all you want is to lie back in the soft grass and sigh. Don't be like me and think about bugs, unless they are cute like butterflies and ladybugs.

Gooby enough for you yet? Ok, so try this quick fix instead: Eat one yummy cupcake with as much frosting as you like. Or a big teacake cookie shaped like a heart.

Everything has its cycle. So do you, and so does healing. What you are going through is physical and emotional. If you want to cry, you do it. But don't cry too hard, and you'll feel something hug you around the shoulders if you just get really still. I would if I could.

Draw a picture of a tattoo you might get one day. (Temporary tattoos are my goal. Love those basic, black Asian symbols.) Write down a number from 1 to 10 and make an animal out of it. The number 2 makes a good swan. Scribble down your favorite word over and over. It's up to you, ya know. Think about it, nobody like Monet or Mozart ever cared what anyone thought about their crazy scribblin's. They just did 'em.

A dear ol' friend of mine gave me an ink stamp with a golden retriever's head on it for Christmas, and I swear, just like in grade school, I give myself a 1, 2, or 3 Doghead day. Stamp stamp stamp. Don't I sound obnoxiously positive, but go with it. Then. you read back on it one day. Give yourself whatever you feel like, when you get really antsy on steroids or just being in your own body too much, read back on the good days you had because you have to look forward to good days that you think you'll never have again. But you will have good days. Again. My dear friend battling, unwavering that she is, a chronic disease head-on for over 2o+ solid years that I can count told me this, and she said it with a warm smile in her voice, a wonderful career helping people heal under her wings, and a life she has quietly crafted like a beautiful sandcastle at the warm sunny beach with two beautiful children to keep her on the run.

And another thing very important, Look Forward to Something. Example: My birthday's in 3 months (HINT HINT just kiddin'), incidentally the same 3-month length course of this second stage treatment, and I'll be damned if I don't celebrate it with a big slab o' rich, red velvet or almond buttercream cake and a nice glass of wine, possibly a nice White Bourdeaux -- something French, something I can't pronounce, but I saved the label for just such an emergency. I wish you could be there, and in a way, you will; and remember, you have a birthday, too, and you'll celebrate.

But you know, Valentine's Day is just a month away -- shoot for that. Any holiday that's just centered around candy and flowers and champagne, what's not to like? No significant other? Good news -- that just means more candy and flowers for you and me, baby.

More on Nutrition and Anemia

Me and the ol' mom have really been hitting the leafy green vegetables hard these past few days. I recommend this highly so far -- spinach salads, broccoli bits, mandarin oranges, and avocados tossed in extra virgin olive oil with a lovely pinch of salt. Do it! My platelet counts today were falling but holding at 47k from 68k two days ago after transfusion. Throw some fresh lean protein on the side, like beef, or even dark meat chicken or turkey as I read dark meat has more iron content.

Another key is to sleep/rest/take a muscle relaxant prescribed by your doctor. Your mind will help your body and worry is hard to escape, but do it.

I'm still researching soy protein and B12, trying hard I try not to think about a pretty, fluffy sweet-faced cow, but for now, sadly -- moo. Have to keep red blood cells and hematocrit levels up.

Me'n'mo always tended toward the healthy stuff (You'd love my mom if you knew her. She's hilarious and will dance around the house with her hair stuck up like a Troll doll if it'll make you laugh), but she's grown oh-so attached to Ben and Jerry's Cherry Garcia in the past few months. I give her The Look, but can you freakin' blame her? And because I love her so, I will find some nutritional value in it for her. Let's tell her "calcium" and "antioxidants" from the cherries, okay? Plus, benefit: It's the lowfat variety of Ben and Jerry's, and you can't tell a difference until the myocardial infarction comes one day from the whole milk variety. So Just Say No to that because, hey, I care about ya. But MAN, Ben and Jerry's...you are just TOO GOOD.

Anyway, here's more positive, solid info I have found on nutrition, plus. Note I have yet to ask these people for permission to reprint this, so if anybody would like me to remove any of it, just email me and let me know. But I value your opinions on the information you're giving -- you are helping people with your experience, so I'm passing it along.

And, this particularly brave woman named Shelley is sharing her experience not with ITP but with HIV. She is bringing up a topic I desperately needed to share -- tell your doctor everything that is going on with your body. It changes sometimes from hour-to-hour, but Remember: Do Not Panic/It's Part of It. And, you might be helping someone down the road with this info.

A couple of days ago, with my aplastic anemia/ITP, I thought I had developed petechiae which freaked me out so bad, the doctor wanted me in the office right then. I bit the proverbial bullet and gave it two days with knotted cramps in my hands and feet, and my skin slowly turned into (my apologies in advance) cotto salami (ew-hew-hew, sorry, but be glad I won't post pics -- usually I'm that "oh man, you reallllly need a tan, girl" white shade); however, after the second day (and two Valium ;), I learned it was serum sickness. You do not want this, but it can be corrected with steroids, so go to the doctor. He even called other doctors in to look at me because it's not something they see a lot. I'll tell a kinda funny story on itpwtf.com about it. But anyway, check out the info I found at thebody.com.

Read up on her (unlike mine) complete and concise article here, but I have pulled out her nutritional notes posted below in italics. She's also experiencing some side effects I am not, but it is good to know. Whatever your health, get out there and eat your cleaned leafy veggies, and treat yourself to a little Cherry Garcia afterwards. What the hell. Enjoy!

Eating Right

First, I have learned about some of the foods that contain these vitamins. B-12 (cobalamin) is found in meat, fish, shellfish, poultry and to a lesser degree milk. If you are a vegetarian suffering from anemia you may need to research other food sources of B-12. Folic Acid (folacin) is found in Brewer's Yeast, spinach, asparagus, dark leafy greens, lima beans and even beef liver.

To help coordinate your meds with a healthy diet write out your typical activity schedule, including times you take meds and eat meals. Write out everything you eat in a 24-hr period. This will help you see what you eat and if you are getting enough foods that contain needed vitamins and nutrients. Part of a good diet includes plenty of protein- and nutrient-rich foods.

It's not always easy to eat when suffering fatigue and loss of appetite. Absorption can be compromised when the ability or desire to prepare and eat food is reduced by fatigue, pain or depression. This can then play a negative role in getting the proper balance of needed vitamins.

Solutions

If you have a poor energy level, some solutions are: eat small frequent meals; keep easy-to-prepare or ready-made foods available; prepare and freeze extra foods when energy levels are higher; keep a chair in the kitchen and sit down while preparing meals; increase activity and exercise when possible*. If your appetite is poor: eat nutrient-dense foods and avoid high-fat "nutrient-empty" foods, avoid lying down flat after eating; drink liquids after meals not during.

Many of us know about the B.R.A.T. diet to combat diarrhea; eat soluble fibers like bananas, white rice, apple sauce and toast (B.R.A.T.) and avoid insoluble fibers like corn, nuts, raw fruits and veggies with skins on. Following these tips may help you overcome problems of fatigue that would interfere with your new diet plan.

The bottom-line is that anemia may be caused by numerous factors, most of which are out of our control. Proper nutrition and vitamin supplementation of B-12 and folic acid are within our control. It's nice to have the power to aid our own quest for good health. Talk to your doctors, seek out a registered dietitian familiar with HIV/AIDS and learn all you can on your own. Be your own #1 advocate for good health. You can make a difference. Below are a few sources for more information on Anemia, Fatigue and the role of good Nutrition.

*Me, I broke a sweat today filling up the birdfeeders in the backyard but man, go for it!

also, ps from me: In my case, as may be in yours, I take whopping doses of iron supplements for my anemia which (let's just be honest here, we're friends, right) have the ability to lock you up tighter than Fort Knox. So, your body will love you so much if you find a nice cereal as I did called Kellogg's All-Bran Complete and munch it as a snack. It's good -- no, really. And Fiber One bars. Yum. Oh, and something tells me you can throw a lucky oatmeal cookie in there, too, too. Ya know, ya gotta have a quality cookie, dude! Just leave out the walnuts.

Researching which if any foods can help build or even keep transfused platelets healthy,

I have run into some of the most heated arguments over that topic. Many people claim nothing helps build platelets in your body. Today, I had to pack in two transfusions at clinic. This is the first batch I've had since last Friday's release from the hospital, walking out like a sloshing teacup full to the rim. My body is both new and sick and the same time, and my "Princess and the Pea" sensitivities I already had before diagnosis are only heightened these days. Good to Know: Odds are, if you are on steroids, they make you crazy. So cry if you have to, but don't be hard on yourself. They will pass. And, you need the steroids so you won't get serum sickness. Get your moon face and know the drugs are working for you. Take them, but remember calm -- it's the steroids talking, not you.

I look at this as a positive thing though. Maybe I can help you with my experience. Heart attack or acid reflux? It's good to know the difference when you are panicky. Odds are, you are just having a mild reaction. Your body will tell you what you need to know. Calm down and breathe. Always breathe smoothly, it will help.

The first batch of platelets was skunky, and I only got a boost from 17k to 29k. It didn't feel good going in. It congested me and went to my throat. Good to Know: Relax, and Don't Panic. The nurse cleared my PICC line with saline, and the tight throat went away Plus, it cleared my sinuses. Weird, but I'll take it. Saline is a good thing, just get them to slow-push it if you are the slightest bit concerned. I need to research this saline solution bit. The second batch boosted me up to 79k. Thank you, God, and thank whomever donated those platelets, batches one and two. Blood donors are absolutely unsung heroes.

Healthy platelets produced in a normal body run from about 200-400k and last about 7-10 days before the body processes them away, filtered through the spleen mainly. I asked the nurse draining in the last bits of bag two, "What can I do, what can I eat, can I do anything, to hold onto these platelets?" A nurse looked me down flatly, saying if she knew the answer to that, she wouldn't have been at work that day giving me two bags of transfused platelets.

However, she did mention something curious, saying she heard that walnuts may help in lowering your platelet count. She had a patient experience a low platelet count after chomping on a bag of Christmas walnuts. I'll research that, too.

Boy the things I have read on message boards so far...I witnessed a heated thread argument on a discussion board where the claims of one user, who said eating strawberry PopTarts boosted her platelet production, set off a firey thread that ended in damn near a custard pie war. As entertaining as it was, it did make me stop and think about nutrition as usual. Does sugar affect platelet counts? What foods help build platelet counts. Today, I did find some helpful information to post, finally!

Lifted without permission from Baby Corner by Anne Sommer, LM, but I bet she wouldn't mind. Enjoy!

Platelets are an important part of the blood clotting mechanism that will come into play following your delivery, when the placenta separates from the uterus and the maternal blood must clot. A low platelet count can usually be remedied by doubling the customary dosage of folic acid, from 400 mcg to 800.

Folic acid can be obtained from a variety of foods such as green leafy vegetables. Some foods with the highest sources (greater than 75 mcg per serving) are: orange juice, asparagas, beans, lentils, spinach and nutritional yeast. Good sources of folic acid are avocados, corn, cabbage, lettuce, liver, peanuts, peas, sesame seeds and tomato juice.

Anne Sommers, LM

More info on folic acid and folate from patient.co.uk:

Folic acid is a vitamin and is needed to make new cells in the body, including red blood cells. The body does not store very much folic acid. You need a regular fresh supply to keep healthy. Many foods contain folic acid including vegetables such as spinach, sprouts, broccoli, green beans, and potatoes. Kidney and liver are also rich in folic acid.

A normal balanced diet contains enough folic acid. However, a lack of folic acid will cause anaemia, and sometimes other symptoms.