Living in Harmony…

It’s been a week and a half since my diagnosis , and 2 units of blood later, I’m beginning to feel a little better. This lazy liver of mine has helped to depress the hemoglobin development leaving me feeling tired with the sensation of tumbling out of my chair or passing out if I stand too long. But that was pre-Wednesday. I got my blood and am feeling much stronger. Even the pain in my tummy is lessening ; it’s getting easier to take a deep breath. The antioxidants seem to be doing their job. And my trusty little mini-stepper is helping with my level of aerobic activity.

While I’m thinking about this the chewable vitamin C(500 mg) from Costco is wonderful! It tastes just like a glass of very good orange juice, so pleasant when you have to  take a pill.  The gummy adult chewables are great too! Enough on the commercial front…I just wanted you to know how I was doing…Good enough to walk another mile! Papa God and I are great companions, His Son the carpenter fixes my troubles almost daily His Spirit giving me the fire to walk on. Down the road…

Last week I finally had my liver biopsied. I as not really prepared for the verdict and it’s taken a half of a week to somewhat digest it. Most of you know about the reconstructive surgeries I’ve had for intestinal birth defects in the past fifteen years. The defect causes the ducts and exits , and veins in that area to be very narrow and small. In the past I’ve had a procedure that has opened the ductile framework making the pain and swelling lessen , and putting less strain on my liver.

It’s been awhile since there has been any restorative work in that area since I had no insurance for 3 or 4 years, and this last year has been a catch-up for the new doctor. The biopsy show scarring and stress and a type of hepatitis that happens when fat gets trapped in the liver and cannot move itself out. Eventually this can lead to cirrhosis of the liver and liver failure. I’m not there yet, Thanks God! But I have some work to do and will see a specialist that can do the opening procedure next month. Antioxidants and activity will help, and somehow I have to get past the pain and able to do some type of aerobic activity for 30 minutes a day five days a week.

Whew! That’s a lot to ask just now, as I’m having trouble breathing from the pulling of my diaphragm from the hugess of my liver. This is another run off the path I walk, no faults, just some bigger stones in the way I have to walk around or climb over. I haven’t seen the nextpart as this little hill fills my eyes for now. But The Son is ahead of me breaking the little traps that might trip me up so I know as Papa orchestrates it all it will somehow work out.

BTW my celiac disease is HEALED! I’m staying off wheat additives, my study of hard & soft wheat and my own understanding of it’s digestibility guides me in what I buy and eat. So another hurdle scaled successfully! Keep me in mind as the days go by, and keep reading. Drop me your thoughts too, see ya in the “Blogosphere”…J

While there’s not much new to say, I am endeavoring to write more! The days pass slowly and bed is where I am the most comfortable. I find I don’t allow myself to breather deeply so I spend the first few minutes yawning when I give in and lay down. There is just too much liver and not enough Judy~;)…

Choir starts again in 2 weeks, we are a motley crew of songsters with angels’ voices. all shapes and ages, some highly educated in music and others, like me, just called to SING! There are tones sung in that choir that make you sit back and wonder . Our pianist is amazing too. Kathy can read a piece of music and make it leap off the page in the first sitting! She broke her hand over Christmas, so we will be without her for a few weeks, and she will be missed!

We celebrate Christmas and our return at a real Christmas party just before the semester re-starts. Some years it’s the first our Director has had time to enjoy her own decorations as we perform right up to Christmas. Between the three choirs, it’s a crazy schedule for her. We have  such fun  sitting and laughing, trading stories and kids’ pics. We never seem to have enough time to share our lives as rehearsal is such a challenge that we need every second we can garner. I love this choir and it’s singers. There’s nowhere else I’d rather spend my free time and singing is the best way I can think of to get my aerobic workout in. Our music is never simple and the satisfaction is especially rewarding when you master a piece and the audience takes that collective breath at the end. Much of our music is spiritual and it does feed The Soul. So I sure hope I can make it back someway. If they riddle out this belly so I can breathe, I’ll be back! I’ll keep ya posted…

CHRISTmas came and is leaving us, today the ninth day–I Will Dance at Tanger outlets as my gift(Nine ladies dancing). Yesterday for the milking maids I made lasagne to go with the pork kolbase to nudge us forward and sauerkraut to make sure we have the luck to service Bruce’s biz to success and provide for us throughout the year. We shared that meal with out Northern family-Ava loves kolbase and “skettis”. I DID however for get the black eyed peas, have to look up what’s missing and make up for that one;)…need that prosperity. That;s a southern one, We northerners use the kraut so we would have been double blessed! Bruce’ Mom was a southern gal so between she & I we covered all the bases. I sure  do miss her!

I taken to trying pastry flour for all my wheat baking. I DID get it ot rise, but being near a colld wall wa just too much for it to stand. The bread machine worked well, but next time I’ll just make it in there and bake it in my  own oven. The pastry flour has a lesser amount of gluten and is a softer wheat that used in bread flour. My cookies were fabulous(making more this weekend, as theyare gone, but my penchant isn’t) I always find I want to celebrate a couple weeks longer than most, and I’m just glad we are Croatian so we have a great reason to:).

Doc says the area that is affected by the Sprue is healing, so cutting down, for me, has been a success. And trying to eat as little hard wheat (breads and pastas) has really helped. While I can’t suggest it as a cure all, try a bag of real pastry flour and do some bakiing(double yeast the bread) . It makes lovely quickbreads with baking powder. So try on!

TO let you know an update tho, my tummy is as big now as a six month pregnancy and it set  my Hematologist on her ear. I was in hospital (again ) right before CHRISTmas, they scanned & x-rayed and gave me (more-6 units thus far this year) blood, trying to maintain a decent hemoglobin level. The iron treatments of the Fall are working, so iron is NOT the trouble. She had seen me before I went into hospital and my girth has grown since then. No weight gain-just girth! so the hematologist called the hepatologist to find out what the heck the plan is! I found out aI will have a liver biopsy in January and was given more pain med to help with my breathing. With thsi giganto tummy it’s becoming very painful to take deep breaths-I have to think about now, so I shy away to escape th pain/

OK, enough Update done. I WILL walk about today in the cold and SHOP(always helps) but the walk is best thing for me. Have a Happy New Year my friends, and one way or another…I’ll see you soon…

So much has changed since the Summer, it’s taken the breath right out of me! Wheat sensitivity and new diet, continued iron and hemoglobin loss, and this swelling of my abdomen has turned my life upside down. Aches and pains from Fibro are just a part of me now, but the pain when I breathe is dogging me. It’s hard to sing when it feels like something bends and turns painfully when I deeply breathe, my body pushing it’s internal swelling against me diaphragm. I HAVE to learn how to do this, or let it make me stop singing. That’s not acceptable. Using the techniques Linda taught us hurts too but I must get thru this. Quitting is NOT an option! I have to take deep breaths so I may as well do it right. Since I have to think about taking  a breath, may as well do it right.

I’ll keep you posted….

Last week I reported to AGH for my hematology appointment and in talking to the doctor was tested and found positive for having a GI bleed. So into the hospital I went! In doing the prescribed blood tests for my anemias, this time it showed aI was having a hemoglobin problem and I was VERY low in vitamin K. Hence the bleed, and need for whole blood. So they treated me wit ha large dose of vitamin K , waited 2 days( I HATE being in the hospital!) and had upper and lower scopes to see just what was bleeding. The good news is–Nothing! Apparently the lack of K  had allowed blood to just ooze from everywhere and now that that was fixed, so was I! So now I tale Vit K as well as B-12. folic acid and iron to fix these 4 anemias!

Good news, my celiac condition was almost better, even with me being “bad’ and eating some bread. O wonder if these anemia are the cause of this rather thaer Sprue causing the anemias. My amended GI anatomy really causes wrenched in the works and my enlarged liver(side effect of teh surgeries) is probably the culprit wiht the hemoglobin problems. Everyda I thank God for my insurance, that they rarely say no and have covered me thru out this oddyssey.

For now, I’m in balance, just dealing with too much liver/ not enough Judy. It’s Christmas, many reasons for thankfulness and joy Be Merry…Happy Christmas!

I’m a little achey…that’s all that has changed. I’m eating but not much more, and white bread just doesn’t hold much fascination anymore. We tried pale Teff burotos and aside from the brittleness it makes a mean buritto! The taste is very acceptable, and I’m trying to find some flour to add to my baking larder. I think I’m going to try some spelt. Limited gluten, a distant cousin of wheat, it does bake bread and thing nicely…we’ll see. I think it comes down to what I can tolerate, which doesn’t appear to be much and my stomach defect & reapir works against me.

My large liver may be getting lazy, I just can’t get the hemoglobin levels up on my own. Hence 2 units of whole blood yesterday. Despite past reaction, I was given only one dose of tylenol and benedryl. It was fine till it wore off(20 minutes before the blood was done).Getting 2 units, I should have had the tylenol/benedryl combo twice as well, but they held it since it went in “so fast”. I figured it out after coming home and looking at all that happened. I want to document this somewhere, sorry, this is it. Here’s the picture: The meds ran out after 4 nours at noon. Now about 12:30, I had 10 minutes on the IV machine and began to get freezing cold. I covered up, the nuRse wanted to get me blanket, but I only had 20 minutes to wait, so  I passed(dumbly).They turned up the heat, my fingers were almost blue and the IV sight started to hurt. Should have know as I got a hot flash in the midst but it was wierd becasue I didn’t warm up. Bruce came I got in the car & turned my heated seat on high. By this time I was hurting all over and I took Ibuprofen. after bout 1/2 in the carI was warming up…then I kicked a fever of 101! The Ibu’s didn’t do much , I took 1 1/2 tylenol(extra strength) and 2 benadryl, and laid down. 2hours later , after soakin thru three sides of two pillows, I felt good enough to get up , and began to put this all together. So now we know…don’t let up on the benadryl when I’m getting blodd.

Today I’m still achey(still have foreign bodies in me for my body to fight against, bit I’m feeling the strength a bit more too. Time will tell if it was enough, or if we do it all again on Friday. Stay tuned…

I’ve aloowed some wheat back into my diet, the only effect I can see is my knees are sore in their fibro spots this week! I’m trying to be as gluten free as possible, there are so many other problems, this seems rather petty. I know Sprue is a big deal, some of the weight loss MAY be from the Sprue, but the other concerns, no iron absorption & lessened absorption just because I have 1/3 less small intestine than most people. The Workshop I’m attending on 12/14 may help me with that. They are supposed to be able to geeet to the bottom of the nuritioanl stuff. We’ll see what they come up with.

The flat taste from the venofer is in full swing today. The back of my tongue has no taste bud sensation and it takes a few days f0r it to come back. This being # 6 treatment, it may take longer. It sure doesn’t help me fill out my clothes, I’ve GOT to get some pants that fit me! Trials and tribs… I’ll stop back after The Rockettes. My sister , Niece & Daughter in law coming with to start out the CHRISTmas Season! Yes, I said the “C” word, and around here, we say it a lot! No “No Holiday” Holidays in this neighborhood! Enjoy…

Thursday and the pattern has set itself. Now that I finally figured out the Venofer does certain things on certain days, I kind of know what’s coming. I really let the gluten thing go this week, and I lost no weight. I  haven’t had that much wheat, maybe once a day, but I feel better, less gaggy eating some wheat. I never realized how much they “fill” foods ” with wheat gluten to pump them up. Yesterday tried one of the Kinnickkannick bagels I got at  The Market District Giant Eagle. The Bagel was VERY dense, not quite enjoyable, but tasted okay. It did make my stomach tumbly though, and that hasn’t happened in a week.  Thank God for anti-emetics!

The Market District is a fantastic store premise, like being in the streets of Europe shopping from store to store for your food! I loved it. I t was a bit big for Bruce, but I’m a shopper for shopping’s sake! Fresh baked breads, treats, sandwiches, rotisserie, meat market, patisserie(for baked sweets and even a crepes station!, they make stir fry and pizza in their ow places too, You would never go hungry and it’s all built $6 a pound( hot dinner and cold bars included)!

Finally got an appointment at the Celiac Workshop , Over four hours of talking Sprue & Me with 4 different docs…what fun! I’ll learn a lot, and hopefully they will help me with these difficulties I’m having. Spaghetti casserole today with rice noodles. Bruce actually likes the rice pasta( I love it and have never been a fan of regular pasta at all!).Another week of learning how to run this bod…more comin’ up…