I get to see Ava, the way she faces things like a little 82 year old woman, in that tiny package. I wear a necklace that contains four little heart gems. Two are Amethyst(For Dru and Ty ) and the remaining two are emerald green , the color of May(for Ben and Ava). she was looking at it the other day, and I told her the little hearts were foe she and her cousins, so I can keep them close. She reached up and held itpointing to the colors, totally understanding the meaning of why they were there. The next thing I knew she kissed the locket and, so knowing, patted my face. Fireworks didn’t scare her, She was the only kid on the hill with her hands in the air yelling “BOOM” at every explosive charge. Yet two hours before rubbing elbows with “VIPs”of our borough, she was up to her elbows in pizza and M&Ms! To quote an old adage, so apropos here, “She’s a caution!” and constantly amazes us.

Now Ben is quite the little brother. Rules the roost and fills the shoes gone before by his two brothers very well. He mimics Dru, the closest to him in age, anything Dru can do, Ben can go there as well! He’s so determined to tell me what’s going on, and if Dru interjects, Ben has to add another two cents all over again. It’s wonderful to just listen to the cacophony as I Talk to Anne, the interplay between brothers so normal yet engaging and I miss their faces so much!

As for me the days wear on. Recently it’s been pointed out to me how much I’ve lost. That revelation set off a myriad of feelings I’ve pretty well managed to quell for the last fifteen years. Facing the facts that mismanaged treatment permanently altered an otherwise healthy body was hard. But now the consequences, none a fault of my own, threaten and have totally taken over my life. Anemia, several different kinds, require constant watching, and checking re-checking blood levels to make sure something doesn’t fall out of sync. And my liver is slowly wearing out. Pain and a huge lumpy abdomen are just the tip of the berg that follows me around. Years ago I was given blood tainted with hepatitis B in a blood transfusion. That has played right into the whole scenario of liver disease. So far I’m at stage three liver disease, one stage removed from the beginnings of cirrhosis. Already there’s symptoms that tell me my nemesis is pitching a fearsome battle. I’ve always been a morning person, tackling the chores of housekeeping early, to leave time to play later in the day. Now my mornings make it to about 10am before I have to nap. A few hours in the afternoon to cook supper, and I’m back to haunting the bedroom by 7.

Don’t know why I felt the need to write this all down, but I suppose it’s part of acceptance. At some point I will need a liver. I have to be coerced to eat sometimes, and even if I do much of the nutrition is lost on a small intestine that just really doesn’t work. Piles of vitamins, injections of iron and B-12, blood transfusions that still worry me since the first one made me sick, that’s a regular week. Fevers and pain are just a part of what happens daily, and it’s so boring to tell people everyday “I feel Miserable”. No one really gets what it’s like inside me, in my head and heart when I have to say “No” so often to the things that I used to enjoy.

And yet the little ones make me smile, my music makes my heart better for a few minutes at a time and I can look forward to some TV, watching the dogs play, and getting in the hot tub when I feel especially good(or bad). Life is still rewarding, small things count so much more and I find people around so interesting and needing to be heard. I can do that, I’m still here. I’ll be back, keep reading…..

Today we will have their family celebration , just us…It’s been an amazing 2 years, and I have no delusion that my making it thru this anemic struggle has been made easier by the presence of these two little people as well as their by the elder brothers/cousins, Ty and Dru. The family would be so much the poorer without these four amazing people! I could expound endlessly as any “Nana” could on the virtues of these four, but suffice it to say these children are the batteries that spur this family forward. Al is done for the good of the next gen, and we’re VERY proud of who comes after us!

I pray you all get the opportunity to have such as these in your own family, carefully hand picked by Papa for the workings of your own family. keep reading…J

In my case it’s a whole different thing. Did you know there is an organ in you small intestine that digests iron? Mine is broken. It’s called the duodenum, a sac-like part of the small intestine that metabolizes many mineral as well as being the holding facility for the liver and pancreatic enzymes.The intestine is a fairly large organ made of several parts, and all work together to keep the body nourished, hydrated and flushed of waste. Fifteen years ago my birth defect was found, and I had surgeries to help the flow of things. I had a chosen poorly for my first surgeon, hence the ruin of my duodenum. I do not use mine, it sits there and excretes the enzymes and juices that it’s supposed to, but it does not metabolize or digest vitamins and minerals anymore. It has been totally by-passed surgically. So for me to get iron I have to have it put directly into my veins-hence the treatments.

This has gone on for some years now, enter the difficulty I’m having with my liver, inspired by the self-same surgical faux-pas that blew my duodenum AND gave me diabetes. The liver is having trouble keeping up with hemoglobin production, and it’s always a race to see which treatment I’ll get-whole blood or iron ~~or both! Friday was iron treatment #2 of a course of 5. Tomorrow I will have blood testing to see if I also need blood transfused.

The Anemia path rules my life…in balance, I can visit Florida, fly, drive, chase my GRANDS and stay up like a grown-up. Out of balance, fatigue takes over, affecting everything in my life. My appetite goes, naps have to be scheduled into the day, life gets a bit grey as I have no energy and have to make myself do the normal chores we need to do to keep a house from falling to pieces. I also have to have learned to let things go. When it comes to cleaning the fridge or spending several hours with the kids…well, you petty much know my decision there. I do the best I can, Bruce helps enormously and allows even more. Without his understanding these last few years would have been horrid. But we both have learned to grab life as it is handed and be glad. So we do…and I have a brilliant doctor who is a friend as well, making this journey a bit more palliatible. More soon…J

So, there you have it. weight is stable, Celiac disease a no-show, LIVER SMALLER!(thanks anti-oxidants) and side pain MUCH better. We’re getting there. Now addressing the fibro flares and chronic fatigue is a battle to be won…keep watching…;)

Again , the new health policy being shoved  at us will be an ugly life to get to used to. My care has been one of real help to me. I wonder where it will go now? Will I be the one told to take the medicine to feel more comfortable and not worry over the condition of my liver…after all I’ve lived a pretty good life(even though someone’s arrogance and lack of study has stolen the last 14 years of health from me?).

Sorry , my strength has been somewhat sapped from all this and I long to see my daughter and her family. I cannot travel without the energy getting the energy back has been an elusive treasure thus far. I guess this tired felling is downing me, so I’ll close for now. As always dear friends my journey continues and the path is not always so rough. Papa holds me upright and helps me over each stone. I’ll write again soon, keep reading…

Soooooooooo, we are 3 weeks into an experiment with a medication that theoretically soothes the nerve endings. It does seem to be helping as I can breathe without much pain. That’s a good thing! I believe the antioxidants and the walking that I’m doing several times a week are helping to bring down the size of my liver. Did you know how easily you can walk a mile at Costco? And the outlet malls help too…flat, nice sidewalks with a well-placed bench when needed. As always the constant fatigue is my enemy, I just don’t have the “get up and go” to do a lot in a day. My blood levels are pretty well balanced just now, so it appears until chronic fatigue syndrome is remedied, I’ll be droopy.

This cold sure doesn’t help, but there’s no money for a Florida visit just now. All our sights are on Bruce getting another job. He has his business here at home that occupies his mind (Thanks, God) but rich it will never make us. Especially when the company that he sometimes does contract work for seems to think Pittsburgh is next to Erie, which is just next to Buffalo, and would like that job done by this afternoon! Don’t these people know how to Google a map? Oh no grousing…Bruce loves to do the work, computers just seem to speak the same way his mind works. His web pages are tremendous works of ingenuity and art, the customers really seem to like his work and recommend him all around.

I s’pose that that’s the catch up on me.  My 2 bigger GRANDS aged up in February, so now I’m the proud Nana of a 6  & 13 Y/O! Life at Anne’s is kept very interesting, but she handles it like the pro she is,and even keeps the school lessons going. Even the littlest one has joined in, at 20 months Ben & Ava are learning at leaps and bounds. Ava is looking pretty interested in The Potty Dance, Pull-ups will be the dress of the day in the coming months. Ben, well…more interesting boy stuff to do just now;) I’ll keep you updated as the kids set new goals for themselves, it’ll be an interesting Spring.

Keep watching…

Singing is a flight of the heart, and aerobic activity, pleasant to the hearer as well as to the singer. It’s a lot of what makes me -me! Without pain I can breathe, measured correct breathing is an immediate need to choir sing-really to sing at all. I have a lot of catching up to do, but determination was sort of built into a redheads demeanor:), I trait we’re all a bit famous for.

I’ve started catching up on some of the chores around here that have been lacking and started sewing, as well, again. Found a pattern that will make great outfits to fit this round tummy very well, as well as help me to re-cut some HUGE t-shirts I love, but would love them more if they fit me! Even if it snows till May(bite my tongue, I know)I have a direction, something that has been seriously lacking for the last couple months. I’m taking enough vitamins and antioxidants to SOME Change and walking more, even striding on my mini-stepper a bit too(I even jumped on my little trampoline for ten minutes the other day) The dog that sleeps on it was not amused! So there’s the long and short of it for now. More later, as always,stay tuned…

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