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JOURNAL - *10/14 Update

This page is my day to day journal and will contain more detailed, personal information. Check back frequently as FeedBlitz and FeedBurner will not send email notifications for "Page" updates. I usually put the date of last entry on the "TAB" so you can see it from the Home page.

2014 - October 11
No way! Has it really been 9 mos since I posted here last! Wow! Well, I have a new addition to my family, a grandson, and my 3rd grandbaby is due to my youngest daughter any day. I'm looking forward to being present at the birth of this baby and because she is local, will get to share many things I was unable to share with my previous grandkids. I'm very much looking forward to the Grammy role, and have been knitting up a storm, bombarding my daughter with more hats and booties than she knows what to do with. Now if only I can master a sweater!!!

As for health, I was doing pretty well and weight loss started coming again. I'm down another 20 pounds and hopefully more to come! Sadly, my significannt other, W was recently rushed to hospital and it was a rough week. He has deep vein thrombosis from his ankle to his abdomen, and now has to be on blood thinners for at least 6 mos, closer to a year. UGHHH!!! This really impacts how I prepare food for him, and I'm trying to get used to it, but the monitoring part is a drag. I have to admit, I've had some fun preparing some wonderful vegetarian/vegan dishes that are cooked, but quite nourishing, and HE is enjoying them and NOT feeling deprived, which is my main goal. I know he was really worried about not eating HUGE salads like we normally do, so I wanted him to feel satisfied with the food he could eat...if it means cooking some dishes, so be it. I'm a lover of raw, but not a believer that we have to eat 100 percent of anything. I'm crossing my fingers W recouperates quickly, but right now, he's not quite up and around, so my ability to get into some recipe development has been hampered. I'll be back...I promise!

2014 - January 8 - Happy New Year!!!
I've been working with my new practitioner for about 3 months now. In fact, today I go for my 2nd visit to get my protocol update. I have to admit that things are going fairly well. I'm working on staying calm and not reacting to things that would normally upset me. I realize that this only puts stress on my body that I cannot afford right now. Working to find things that I'm really happy doing, laughing a LOT more and getting out of my cave, spending time with people that support me in a positive way! I've also lost 11 pounds since I started in October. Once again, the weight loss has stopped for several weeks, however, the fact that I've lost weight at all is a very good sign, and I'm under 200, finally!!!! I'm hopeful and will continue working with my practitioner. I'm taking a LOAD of supplements, which I really don't usually like to do, but apparently, my body was not absorbing enough of them from my food, so we are trying to jump start everything! I'm looking forward to seeing the Doc today, and hearing what he has to say!  I'm looking forward to a really exciting new year. I love facilitating my raw food meetup group.

I'm also headed to LA the end of this month for the Living Raw Expo where I was nominated in several categories, including Best Raw Gourmet Chef.  How exciting to be attending this year! I'm working on my book, Raw Pizza, and hoping to finalize things with my publisher and move forward with it! It's going to be a very exciting and creative endeavor!
Wishing you all a very happy, healthy and prosperous new year!!! Namaste!

2013 - Highlights
Wow! I can't believe it's over a year since I posted in here last. I struggled with writing about what was going on in my life...and kept thinking it would get better. Here it is, October, 2013, and I've taken a huge dive in my health!!! I'm frustrated and quite depressed...but am willing to fight like hell to get back up.

For those of you who have read my previous posts, you know that 3 years ago, this month, my mom passed away and there were some really ugly family dynamics going on. A few things were so
horrific and intense, ripping my heart out and shocking me to the very core. As I've taken time to heal as much as I can emotionally, I think the fallout of it all finally took it's toll on my health. One thing about humans is that, unlike animals, we suffer from Post Traumatic Stress. I'm pretty sure that's what is happening now. I knew my adrenals and immune system were extremely compromised to begin with, but stress will wreak havoc on the body. While food is a HUGE factor in health, emotional and physical environment are equally important and stress can be quite insidious. Sadly, my health has spiraled quickly in a downward motion and I've had to make some extreme changes.

I started a jazzercise class back in June, against my practitioner's wishes. I was SOOOO excited to be exercising again, and knew that I'd have to take it slowly. Fact is, a compromised adrenal system can't tell the difference between stress and exercise and sees them as one and the same! While I was having a grand old time adrenals were like, "WTF are you doing?"

Umpqua River - Oregon
I thought I was okay, until I hopped on a plane to Oregon to visit my Medicine Flower friends. For most people it's a difficult journey, but for someone with a compromised
immune system, air travel and 12 hours travel, door to door
 was over the top. Having to walk in the heat outside,
lugging an oversized laptop and carry on several blocks, to get to our puddle jumper, was more than I could handle. I had to ask for wheelchair assistance in Eugene and the entire trip back, and frankly, I've not been the same since. The fibromylagia is worse than it's ever been, and I feel like I'm 95 years old!

Here I am, teaching about raw vegan food, and how to feel healthy, and feeling like sh*t! I don't have all the answers, but this is what I love and feel passionate about, and I know that in the long run, it's helping me. I know that I LOVE creating plant-based recipes...and even with all of this illness, I feel much better with the majority of my diet being raw. I'm still sleeping better than ever, and my IBS is not a bother. I'm being revisited by some of these old auto-immune pests, but other things that used to be a bother, are no longer. Mostly now, its everything associated with adrenals...and I know the exercise and stress were major factors.

Soooo....I'm eating 80 - 95 percent raw. (I don't think anyone can say they eat 100 percent raw on the East Coast), and I'm working with my old practitioner, who started me on a slew of concentrated nutrients and Sunrider products.  I start my day with a large mason jar of warm water, 1 whole lemon, juiced, 1T unsulphured blackstrap molasses, pinch of cayenne and 1t of vit. c powder. ...Then it's onto my smoothie. I'm back on Sunrider products because when I used them religiously many years ago, my IC went into remission, and I never felt better! Not cheap! But at this point, I need to re-try what worked for me in the past. Food alone is not doing it. I need a little boost to help things along.

Breakfast seems to be the largest meal for me between the lemon water and smoothie, which includes
Sunrider Nu Plus, Quinary, coconut water/meat, chia, kale, ginger, celery, and whatever flavor I
decide to make it. I'm STUFFED! No exercise, other than a light walk and lots of stretching. Lunch, I pretty much graze on fruit, celery, maybe a juice once in awhile with lots of parsley, cilantro, roots, etc. More supplements....and dinner is a large salad, raw soup or gently cooked soup. Once a week, I will have lightly steamed veggies and rice. Evening snack is fruit and once in awhile I'll treat myself to a chia pudding. I've lost 4 pounds since I started...SLOW, but at least something. I've not lost any weight in over a year, so I'm glad to see something shifting.I know I'll kick this and I'll be better than ever.

Meanwhile, I keep plugging along and still working on my Raw Pizza book which I'm super stoked about!  If you are on Facebook, you can see some of the photos I've posted. Recently, I  participated in a wonderful video project - Living Raw.

The Living Raw team really knows what they are doing, and we are thrilled with the preview, so far. Also new is from my Raw Food Meetup in Centra NJ that I am facilitating. It's been a lot of fun and now that I have a facility, workshops are on the horizon. Our Water Kefir Workshop a few months ago, was a huge success!


And last, but not least, I got to visit my GrandPrincess in SC - lots of sun and relaxation...and seeing my precious granddaughter was amazing! I miss her so much! 

I'm looking forward to all that this coming year has to offer, including good health and lots of creating!!! I'll try to post here more frequently, and keep you updated. Blessings...BDS

June 23, 2012
On my way to my daughter's rehearsal dinner - wedding tomorrow!

May 24, 2012
Back on my exercise regimen. Every time I try to exercise, no matter how simple I keep it, I get sick. I guess my body produces lactic acid, and it's not getting rid of it, quickly enough, But, I LOVE to exercise, so here we go again. I started on the elliptical at only THREE minutes, stretched some on
the yoga ball, and bench pressed the bar only. Yep, I was sore and achy from just that. I skipped a day in between and did it again. After a few days, I am now up to 15 min on the elliptical, the bar plus another 5 pounds, dumb bells, for a few bicep curls...and then to help with the lactic acid, I do a few minutes on the rebounder, dry brush and soak in epsom salt. So far, so good. Yesterday, on top of the exercise, we went to the community garden to do our planting. I ended up having to re arrange the rows, shoveling and weeding, bending over, doing a lot of physical work. I was almost in tears before we finished because I hurt so badly. I came home and passed out on the couch. The thing with FMS and Chronic Fatigue is the complete sense of exhaustion. It's like my body hurts from the inside out. I got into the tub and did another soak and woke up today with my wrist and shoulder a bit sore, but not at all what I was expecting. YAY!! The sad news is after a week of this, and really watching what I ate...STILL no weight loss. But this has been going on this way for years! I know my Dr. tells me to stop worrying about it, but when I make an effort to try something new, that anyone else on the planet would benefit from...and I don't, it gets discouraging. I can certainly feel the difference in my body, and have probably lost inches - but I'm just not gonna start obsessing and measuring myself again. Been there, done that. But if working out, breaking out a little sweat and scrubbing it all off can help me detox and gain some stamina - I'm all for it! It's a lot of work, having to do the exercise and then make sure I promote the detox by rebounding, dry brushing and soaking. Will keep you posted! Right now, we are getting ready for my daughter's wedding and so very excited! I'll need the extra stamina, so hoping this gives me an extra boost!

PS - The other good news is that I'm still alternating between juicing and smoothies and I'm doing great. No icky side effects from juicing like the last time. Woo hoo! Baby steps are better than no steps!

April 8, 2012 
If you would like to read some of my recent posts for The Health Activist Writer's Month 
Challenge, PLEASE GO HERE. There is a lot of personal information in these posts.

January 5, 2012
Juice Day 7 - C JUICE: carrot, cabbage (red), cucumber, collard....and parsley. 16 oz juice t o 4 oz water. Then I ate: 1 banana, 1 apple, and leftover cashew/chia pudding...yum yum, good to go.

January 4, 2012
Juice Day 6 - carrot, collard, parsley, red cabbage, cucumber..woohoo.. .16 oz juice to 4 oz water...and I am feeling bad detox affects. I am so stoked! Now I need a really good juicer. The one I'm using is not really doing a great job and leaves me with some pretty chunky pulp. I'm just pleased to see my body tolerating the juice. I do a juice for breakfast, wait about 3 hours and then do a BIG smoothie. A piece of fruit  or stalks of celery, and that's it until dinner. Night time I do enjoy a persimmon...and still every now and then grab for a couple  of carob covered almonds (not raw)...but I'm feeling a lot better!

January 3, 2012
Juice Day 5 - carrot, collard, celery, parsley, apple, red cabbage. 12 oz juice and 4 oz water...little more juice and more concentrated today.....and hanging in there...I need to take my detox baths. I get lazy and put them off..and they REALLY do help. I did not walk hip is a bit sore from walking 4 days in a took a break, plus its freezing outside.

January 2, 2012 
Juice Day 4: carrot, collard, red pepper, kale, celery, parsley, apple (8 oz juice/7 oz water). First walked 1.25 miles - windy so more resistence..and felt it..walk was more challenging. Drank juice..will wait a bit and do a green smoothie for lunch. Slept over 7 hours last night, which is AMAZING for me...still in a better head space. The juice does cause some bladder sensation, and certainly more frequent urination, but I'm not going to be alarmed by this or fear IC symptoms. I know there will be some reminders that I am detoxing. I just want to make sure that I don't exacerbate

 anything and cause myself more pain than necessary.  So far, so good. 

January 1, 2012
As some of you know, as much as I would like to, I have been unable to do much juicing at all. I have blocked bile ducts and juicing causes my body to detox too quickly, and the toxins have nowhere to go.  They get reabsorbed back into my body, and have actually made me sicker. As a result, I eliminated it from my life and opted for smoothies instead. 

I have seen some great improvement over the past year and I need to remind myself of this!!! Last year I was in AGONY and could barely move my arms, brush my hair, shampoo my hair, and my hips ached when I walked. This year, I have about 90 percent mobility back in my shoulders...and my hips ache once in awhile if I've been too inactive. YAY!!! 

At this point, with a lot of the body pain gone, the fatigue persists and feels so debilitating. As a result,  I am still home most of the time. I'm trying something  NEW for the NEW year. I am going to up my raw intake to at least 80 percent, hopefully more....AND I'm adding SMALL amounts of fresh juice to my diet. The last few days I had 8 oz of juice per day, DILUTED with 8 oz of water. I noticed I had so more energy yesterday and today. I walked one mile...and normally, I come home and want to sleep. Yesterday, I came home and put some flat bread in the dehydrator ,and noticed I was sitting here SINGING. It is worth noting a definite improvement in my energy AND my mood. 

I'm going to take this VERY VERY slowly and very gently, just how the New Year gently rolled in, my deeper and continued cleansing will be gentle and smooth and I need to learn how to stay present through this as well. Everything is changing. I'm working with a Barbara I've never known before. How my body reacts, the way in which my brain and cells communicate with each other. It's all new and it's all improving. 

ON top of the bits of juice, I'm being diligent on taking my detox baths and getting some gentle exercise. Exercise and the baths, both aid in I have to help my body any way I far so good. Will keep you posted. I think I may move this to the NOTES section so you can follow only if you are interested. Blessings for a happy and HEALTHY New Year! Love you all. Barbara

Jan 1 2012 
Juice - Day 3 - carrots, dandelion, cucumber, 2 stalks celery, kale, romain, persimmon
W gets the pure juice...i take only 8 oz of juice and dilute with 8 oz of water....i'd rather not dilute it..but it seems to be helping and so far, no side effects..See Updates above...

Wishing you all a very happy new year. I've been chugging along for the past year, feeling like my feet were dragging in the, more like my heart was dragging in the sand. I've felt so wounded from all that has transpired with my mom's passing and family drama. Combine this with my physical state, and the place I've been in has not been very good. I try to put on a smile, but found myself just not wanting to be around people very often. The new year always seems to inspire change...a NEW year, with NEW opportunities, NEW wishes, NEW dreams...

It's a time of introspection and I'm known to spend several days meditating and thinking about what I want to accomplish in the coming year, the things I want to let go of, etc. This year was very different for me. There was no meditation and there was not even a burning bowl ritual. I have not placed my intentions for the year on a little piece of paper, tucked into my little Tibetan Prayer Box.  Nope. I stayed home with W, curled up with him on the couch, and watched a movie. (Don't even ask me which one, because I don't remember), and then we watched the ball drop. Yes, at midnight, we sipped a bit of champagne, and I shed a few tears for
Mom and Dad. I missed that midnight phone call either to or from Mom, telling me she loved me and
 wishing me the best for the coming year.

But I did not stay in that space. I was just present. Present with my feelings, present with where my body was, present with what I was eating at the time. I did NOT over think anything. It was just a simple and easy evening....and yet...something happened. W went up to bed, and I stopped to check my email. While I was sitting at my computer, I felt a sensation in my body, more of an energy. I felt my heart. It felt like it was literally healing, and a lotus flower. I felt LOVE flowing in and a tingling in my 3rd eye, along with a sense that everything would be okay, that I would be okay.

The past year was about "letting go" to the point where I wondered what was left of me, or for me. I let go of my sexuality because the pain of my Interstitial Cystitis made intimacy almost impossible. I gave up my career, because I felt too sick to work. I gave up most of my social life, because I've been too tired and too depressed to connect with most people. I gave up my sense of security because with little income, I truly have no idea how the bills are getting paid or where I am going to be from month to month.. The list goes on and on. It's been a sucky year! But in that moment, on New Year's Eve, something shifted and without all of the ritual that I have put into previous years, I felt and still feel a sense of peace.  So as far as I am concerned, 2012 is going to bring in some amazingly good things. I do wish you all a most fantastic journey. I know it is going to be one for me....

September 30, 2011
The month of September rained, and rained and rained, and rained some more, and my motivation for walking...DIED! My desire to eat 100 percent raw for a period of time, also DIED! Yesterday was a major wake up call. I was forced to step onto a scale in a medical office. CRINGE CRINGE CRINGE. I gained about 14 pounds back and it PAINS me to put this in writing, but if I'm not honest with you, then how can I be honest with myself? I actually think I lost a bit this month, however, since I have not weighed in 4 months, it's hard to tell. I'm writing this because I know many of you
have set goals or made promises to yourselves and "failed." I want to inspire you to not feel guilty
about it and drive yourself into a deeper hole, only causing more self-destructive thought patterns and actions. I am simply recognizing that I was not ready to commit to the things I stated, allowing myself to "see" this on a deeper level. Now, I need to reassess, and move forward. It is the Jewish New Year, and a good time of year to set NEW goals and move forward in trying to be the best that I can be. Shana Tova! (Happy New Year).

Pastapalooza - Organic Avenue
The weather is cooling, and this is the time of year, my body had previously started to ache. I'm hoping the "sun gathering" routine this summer, combined with a gentle stretching routine, have helped my Vitamin D stores and that I will not be in pain! My shoulder has been significantly better in the past 2 months and probably have regained about 75 percent of my movement back!!! That is amazing, considering last summer, I could not even lift it.

Organic Avenue - Pastapalooza
It's time to get back to walking, and as long as it's not raining, there is no excuse. I've been fighting a very low slump in my life, and not being able to return to work has made things extremely challenging. I went from a 6-figure income as Director of Customer Support, to nothing and it's pushing me to explore new avenues. This is how I discovered my LOVE of
raw food preparation, so I need to figure out how
I continue to do this, and survive. If I returned to work right now, I'd have to abandon so much of what I've been doing with Rawfully Tempting, and that would break my heart.

Organic Avenue - Pastapalooza - (Kelp Noodles)

On a high note, Pastapalooza at Organic Avenue was a success. It was in the middle of the week, and prohibited some people in NJ from getting into the city for the class, but it went very well and the feedback was great! The crowd asked excellent questions, seemed very engaged, and loved the Rawfully Tempting samples. I continue to coach and provide Raw Food Prep Workshops, so check the SERVICES tab, and feel free to contact me for additional information.

September 1, 2011
Wow! I cannot believe it's already September! I'm headed to Organic Avenue in NYC today, to tape a video promo for our upcoming event - Pastapalooza! Check out my blog or their site in order to register, if you'd like to attend the class. It should be a blast.  I just wish I felt better right now.
Something happened, and I'm having a really severe IC flareup. This is the worst I've had in  many
years, which makes me very skittish about leaving the house. There is lot of bladder burning, pain, urgency and frequency, and low back pain. If you know anyone who has this horrid disease, Interstitial Cystitis, give them a lot of love and patience. This thing may be invisible, but can wreak total havoc on your life. People generally don't have any idea the amount of pain we have to deal with day to day, especially when a flareup rears its ugly head! I didn't wear a pair of jeans for 3 years. Things like walking, sitting, intimacy, leaving the house, shopping, working, all become unbearable.

I need to figure out what I might have done to contribute to this? I have to admit that I've been very lax with detox baths that I'm supposed to do every other day. However, it is with good reason - my damned overflow valve was leaking and it flooded our dining room ceiling. So now I'm terrified to take baths...but I promise, I'll get back to it, and just be careful.

Another possibility is that I started using a tiny drop of clove oil on my toothbrush for some tooth pain I'm experiencing. It is very possible that this is too strong for my IC bladder. Folks with IC have systems that react strongly to triggers that would not effect most.

One other possibility is that I started walking again. I'm doing about 11/2 miles which is a big deal for me. With IC, you often experience Pelvic Floor Dysfunction. This distance could be a little too much, and I may need to cut back and work my way up. I was really feeling good about the walk, thinking I was strengthening my pelvic floor - but maybe just a little too much too soon. The problem with IC is that there are so many variables, it's hard to dissect and find the offending culprit. I'll keep you posted on my progress.

Meanwhile, I'm making a commitment to stay as close to 100 percent raw as possible for the next few weeks, keeping it simple. I was eating too many tomato based things, which can cause a flare, although have not bothered me in years....AND...shhhhhh, please don't tell anyone...I have to admit it,
 my dear love, W brought home multiple bags of organic, baked potato chips!!!! Okay, so compared to
most junk food, that may not be the most awful for some folks - but I don't think all that added salt and gunk has done me much good. My holistic doc believes a lot of packaged foods like this contain mold, which can really wreak havoc on our bodies, especially if our immune system is already compromised.

Here is the deal...I can stick to a plan with no problem, so long as I don't have an offending food in my face. Going out to eat, or having W bring things home can be very challenging for me. I have to work on my willpower!!! Given all of the emotional turmoil in my life the past few months, it makes it very easy for me to stumble and fall back into the slippery slope of comfort food and bad habits that got me here.

My other weakness is carob coated almonds. So neither of these snacks are raw and W believes that a few of them once in awhile, is no big deal and he's probably right, for him! It is difficult to understand eating disorders, addictions, and lack of willpower, if you've never experienced them yourself. I have to ELIMINATE food like this from my sight, or they call out to me, haunt me, and I end up eating too many of them. If I want to splurge, the only way if for me to buy as much as I would allow myself to eat, and no more. And I'm really good with that. The problem is living with another person who does not understand food addiction and thinks I need to just suck it up. That's like leaving an alcoholic beverage in front of a recovering alcoholic. Not easy!  However, this must be in my control and  I take total responsibility for this problem. Wake up call...NOW, that I'm feeling really sick again, I need to look at whatever I'm doing that might be contributing to this pain. Thanks for allowing me to humble myself here.  

August 19, 2011
It's hard to believe that the Summer is almost over. I feel like I've accomplished so little, but I think much of my time has been in limbo. So much sadness due to family drama after my mom's passing. I 
think I was so shocked and devastated by how a family member handled the estate, that I never really allowed myself to start the grieving process. It was too much to bear!. All of this has not been good for my health and sadly, it seems no matter how good I eat, the stress counteracts it, and most of the time, I am feeling pretty crappy. I've also gained weight, which is very upsetting, but stress will do that! I am working on cutting myself a break and allowing the process to unfold. I feel very drained, and while I try to get things done, and am trying to get back into socializing, up until now, I've been rather reclusive. I think the grieving process was delayed and only just beginning. Tomorrow is 9 months since Mom passed, and it feels like I'm shedding more tears now, than previously, and that is okay.

The good news is that I started attending a bereavement group last week.  Hospice also provides a grievance counselor, so I'm talking with her too, and we'll see what happens. Just taking it slow. This year has been tough on many levels and I'm looking forward to things turning around. I'm looking forward to the stress easing up, and hopefully, I can start to feel better physically and emotionally. One can only hope...

There are a lot of lessons that come with such a trauma. Learning that no matter how badly someone else shows up, I have no control over them. I've had to give up and let go of "things" that I had been promised my entire life. It broke my heart and was really bogging me down. I had to make a decision about what was more important...the mementos, or my health and well being. Easier said than done, but each day, I let go a little more.  I know when I come out of this, I'll be stronger, better and a lot more secure about who I am and where I am going. I was there for my mom, and gave her everything I had, and then some. I have no regrets at all. She knows that I was there for her too, so that gives me a sense of peace. I just miss her a whole lot right now, and it makes my heart feel heavy sometimes.

My daughter, son in law, and grandPrincess all moved down to South Carolina. I miss them terribly, and hope that I can make the trip to visit them very soon!

May 6, 2011
Finally a reprieve from some of the stress here! My friends at Medicine Flower invited me out to Oregon for a visit. It was amazing! As soon as I got on the road towards their home, I breathed a huge sigh of relief. I could instantly feel the fresh air and the gentle caress of the Earth Mother. It reminded me of how much I missed connecting with the Earth. Between the trees, rivers, mountains and ocean, I was in complete awe. BEAUTIFUL.

The week was leisurely and they were very cognizant of my physical limitations. I visited the Redwoods, several gorgeous rivers, including the Smith River, which was a stunning turquoise blue, and the Coast. We walked along the quietest beach I've ever seen in my life and watched the sun set, accompanied by a circular rainbow that wrapped around the sun.

On top of all of this beauty, I got to experiment with some of the Medicine Flower flavors I had not yet, fig, walnut, and more. I also got to sample some of the wonderful essential oils and body butters they make. Unlike synthetic perfumed brands, these products are all natural and the aromas and flavors are intoxicating. In addition, I got to do some cheffing for some of the Medicine Flower clan. Good food, good flavors and awesome aromas, made this past week an ecstatic journey of the senses!!!

While I missed my honey, I have to admit I was not quite ready to return to New Jersey.  We all bonded so nicely. It felt like my home away from home,  and I look forward to visiting again soon!

February 18, 2011
I know it's been a long while since I've posted here, and I apologize. Life has been rather challenging, and I did not want to use this as a bitch session. I'm only just starting to really grieve the loss of my mom now. Now that some of the family drama has quieted down, I have time to really think and feel all that has transpired. I miss her, big time! I am honored that she chose to pass while I was there with her, holding her hand, but I have to admit, it does haunt me. Mostly because my brother and I are the ones that had to make the decision to let her go. Once off life support, it seemed she really held on and did not want to go, and then I started feeling guilty, like maybe I made the wrong decision, or maybe she was angry with me for not giving her more of a chance. I know, it's all the emotions talking. When I logically think about it, I know she didn't stand a chance and holding on would have only prolonged her agony. So, it's time to let go...and that's gonna take awhile, so bear with me.

Thank God for W in my life, because I'm so not myself these past few months, and he just hangs in there with me, good or bad! Not many people would stick through the things he has had to deal with. I am grateful!

Now for my health, eh. Sorry to say, not much great news on that front. I think the stress really set me back. My doc said that it was like going through an "emotional car wreck," and I guess that's pretty much what I feel like. Given my condition prior to all this, it's no surprise that I took a little turn for the worse. But it's gotten me really down. I really need to see more improvement, soon! I'm so tired and lethargic. I try to go out with a friend and after an hour or two, I'm so drained, I feel disoriented. I miss my granddaughter and have not really seen her since June. My daughter does not come up to New Jersey, and I certainly cannot make the trip down to her right I ache, missing mom, missing my lil' Princess, and mostly, missing me, Barbara in a healthy and vital state.

We are trying a few new things this month, and hopefully that, combined with finally being home and able to get some rest, I'll see some measurable improvement. I also started to gain weight back again, and THAT really upset me. I'm hanging in there, not giving up, still puttering around in the kitchen trying to come up with new ideas, but don't have the energy or stamina to do it like before. I also need to find some sort of employment that I can do from home...because the bills need paid!!! I cannot even think about going back to work out of the house right now and that makes me SAD.

I hesitated writing, because I don't want to be negative. But this is what it is right now. I'm looking forward to better times to come, with improved health and vitality!!!

December 2, 2010- Saying Goodbye
Those of you that read my Facebook posts already know my mom recently passed. On September 6, Mom underwent a double bypass surgery. She was 75 years old and over 300 pounds. We were warned in advance that surgery would be risky, but it seemed there was no alternative. (More info on this is in previous posts). This ordeal seemed to go on forever, and yet, looking back, was a relatively small capsule in time. Everything feels surreal still, and sometimes I wonder if I'm going to awaken one morning and discover, I've had the worst nightmare of my life.

There were multiple complications along the way, but the most destructive was a psuedomonas bacterial infection. Psuedomonas is cruel, insidious, and antibiotic resistant. The antibiotics they administered to fight the infection were enormously taxing on the kidneys and worrisome to us all. It was a constant balancing act, trying to annihilate the bacterial infection, and not destroy her kidneys. Either the infection can kill you, or the meds used to beat the infection can, and from what I've heard, once you've had this bacterial infection, it's never truly eradicated.

Mom's chest cavity was opened three times and she had 7 major surgeries in 12 weeks. Once for the original bypass surgery, and twice to fight the ongoing infection by installing a wound vac, (to help her heal). When she passed away, her chest cavity had been open for almost 3 weeks. During that period, every time they cleaned the wound, mom had to be heavily medicated, and more dead tissue removed(debrided). Each time they did this procedure, we wondered how much more mom could  tolerate, and when the vicious cycle would end.

As her kidney functions started failing, she became more lethargic. She couldn't open her eyes or respond much, even when we entered or left the room. If you prodded her, she'd fight to open her eyelids, but could never really look at you, or focus for more than a second. It was painful and heartbreaking to witness. It destroyed me when I had to leave her for a week, saying goodbye, and wondering if she heard me or understood that I'd be back as soon as I could. And then, upon returning, seeing no reaction in her whatsoever. I wondered if she was aware of how much time I'd actually spent with her over past 3 mos. We'd hold her hand and talk to her, tell her how much we loved her, but her ability to respond to us was minimal. The exhausted body, laying before us, was not mom. In those last few weeks, we watched what was left of her essence, drain, and when her kidneys failed, my brother and I had to make a decision about her treatment. Fortunately, she had a Living Will, which made our decisions a bit less difficult.

W, my brother and sister in law, were there, as the nurses weaned mom off of the ventilator, and then moved her into hospice care, within the hospital. By 8PM, she was off the ventilator, and the doctors had told us she would not last long. However, fighter that she was, mom continued to breathe for over 30 hours on her own....and these were some of the most trying, gut wrenching moments in my life.

It was an odd feeling, waiting for someone you loved to die, and in some odd way, wanting them to. It's not like she was in the advanced stages of cancer and we were given time to prepare for this.  Her leukemia was in remission and was not a current concern. Mom went in for heart surgery, and a matter of weeks took us from helping her fight for her life, to helping her die. We wanted her suffering to stop, but watching her fight, stirred up every doubt in my mind, along with feelings of guilt. Is this what she really wanted? Were we doing the right thing? Why was she fighting so? What was she holding onto? There was no turning back, and when I revisit those thoughts now, I know deep in my heart of hearts, (and from multiple doctors), if we had put her on dialysis, and she did survive, it would not have been a life she wished for or what she requested in the terms of her Living Will. We had to honor her wishes, and let her go.

In the midst of the sadness and grief, however, there were joyous moments. I think we all became quite manic. Drained from making the final decision, exhausted from 2 days of sobbing, flying, and somehow, relieved to know her suffering would soon be over. We were laughing, joking, wired, and hungry. So...we threw a pizza party.. right in the room with mom!  Seriously! Decadent, NOT-IN-THE-LEAST-BIT-RAW, PIZZA!  None of us had slept in over 24 hours. We all flew in from out of state, and had no idea how ravenous we were. I'm sure some of that was bundled nerves. After 3 mos, minus a few trips home, of caring for mom at her bedside, this part of all of our journeys, was going to end.  I don't know what happened, but W went out at 9PM and came back  with boxes of gourmet pizzas and calzones, cloth napkins, china, and real silverware, and a couple of beers. We pounced on the food as if it was our lifeline. We ate as if we had not eaten in months! We salivated and gorged ourselves, delighting in the food, as if it were a royal feast. Amidst the exuberant laughter, our eyes were always checking mom, watching the numbers....the numbers....the numbers, those damned numbers....and her vitals were as strong as ever!!!

Mom's vitals were rock solid and she made it through that night and the next. I knew in my gut, the 2nd night would be her last, and told W that afternoon that I planned to stay all night with her. For you woo woo folks, I felt the presence of my Grandparents in the room that day, and knew they were waiting for their daughter.

At midnight, my brother and SIL were going to try and go back to get some sleep. On their way out, there was a fire drill and they were told to get back in the room and close the door. Weird? Yep, but I knew it was a sign they were not supposed to leave,  and told him so. Fire drill at midnight? My brother laughed and continued on his way, when the drill ended. At the elevator, my sister in law told him she agreed with me, that she thought it might be a sign he was not supposed to leave, but they did.

I tried to lay down on the extra bed, next to mom, but the warning alarm on "The Machine" kept going off. Her saturation level had started to drop below a certain point and the nurses did not know how to stop The Machine from beeping. They offered to unplug it. NO! NO! I wrapped towels around the damned thing to silence the beeping, but I would not disconnect it. It was the only gauge that I had for where mom was on her journey Home.

Who was I kidding? Lay down? There was no way I could sleep. My eyes were locked on The Machine...The Machine, and mom's chest, heaving up and down with each labored breath. Her pulse was starting to drop, slowly, at first. So what else do you do at 1:30 AM while sitting in hospice, waiting for your mom to pass? Find a vending machine! But, did I ignore the signs when the vending machine would not take the ONLY $5 bill I had in my possession? Hell no!.

I found myself in CVICU, (where mom had spent most of her 3 months), and knew the majority of nurses on the day staff.  I managed to get change from one of the night nurses and headed back to the vending machine. I was determined. GUILT GUILT....and then...JUSTIFICATION...."Hey, my mom is dying, it's okay to put this JUNK in my body." It worked! I got a bag of baked potato chips and Famous Amos Chocolate Chip cookies.  Oh yeah! Okay, so it was not the best of moves, but I'd probably do it all over again, given the circumstances. (It's not like I had celery sticks available.)

I re-gowned and gloved myself, plopped in a chair next to mom, and then blamed her for my binge. "This is all your fault!" I mumbled, gobbled down the garbage...and noticed the numbers on the The Machine were falling more quickly now (saturation, pulse and blood pressure)...very quickly.

I knew my brother was probably just settling down, but I texted him with the current stats. And then, things started to happen...quickly, very quickly. I KNEW mom was going. Numbers plummeting rapidly. Marie, my sister in law called. I was holding mom's hand and watching The Machine, ... "Please drive carefully, Marie, but get here quickly,"... and then,  a dark brown fluid (bile) bubbled up from mom's mouth, and ran down her neck. I grabbed for  towel to clean mom, talking to her, loving her, loving her...and then as I looked at her, I realized, that was it...

There was no more heaving of her chest, or struggling to breathe. Everything just S T O P P E D. As I glanced back over at The Machine, it read all 0's. Mom's body lay completely motionless. My mom, my beautiful mom had finally made the Journey, and was returning Home at 11/20/10 at 2:20 AM.

I've not been very good at grieving, having lost my dad suddenly at age 21, I'm pretty familiar with the process, or so I thought. I'm older and wiser, right? This experience was completely new to me and I was so unprepared. And this time, there was no other parent to lean on, to be responsible. I realized the very cold fact that I have no parents and I'm nobody's "little girl." I'm surprised how hard this is hitting me.  My brother and I were in charge and made decisions for everything that happened to mom. Perhaps I'm still too "raw" to be writing this, and I'm leaving out, or forgetting so many details that will probably come back to me in the days and weeks to come.  But for now, this is my story of My Last Night With Lea. I miss her terribly, and for a awhile, allowed myself to sink into the depths of hell. But with the love and support of a few really dear friends, and an awesome holistic physician, I'm stepping back into the land of the step at a time, but I'm getting there.

My darling W, what you have had to endure the past 3 months, no one will ever know or appreciate all that you did for both me and my mom. You lost me too, and yet you have stood by my side and supported me without complaint. We're not married, and my family doesn't really know or understand you, and they don't comprehend all that you sacrificed for this family. But I know, and God knows, and the truth is I could never have had this experience and given my mom so much of myself without your strength and love. Thank you, my love. I know my mom recognizes all you did for us.

Mom, you are with daddy now, and so many other loved ones that crossed over before you. Looking at photos, I realize you had one of the most beautiful smiles I've ever seen, and a sense of humor that could rock any party. You were silly and lively, feisty and stubborn. Your hugs were the best, and you were a great back scratcher. We have shared times of joy and times of sorrow. And as mother and daughter, we've shared closeness and we've shared conflict. But through it all, you've always been one of my closest friends and confidantes! You now have two wonderful granddaughters, Jessica and Lindsey, your precious great-granddaughter, Charli, and future great-grandchildren to come. Each and ever one of them will carry with them, your legacy of LOVE...forever in their hearts. I love you, Mom. We all love you. Be at peace!

October 27, 2010
Life is surely complicated these days. I'm trying to keep my head and heart above it all and not get sucked into the emotional drama, but this is the hardest thing I've ever experienced in my life. I feel removed from everything familiar and warm and most of the time, I feel like my life is one big, bad dream, and I'm going to wake up and all of the sad feelings, disappointment, and fear will vanish. But they are here, and they are real and they are not vanishing! So many mixed emotions.

Mom is still in cardiac ICU and is confronted by one challenge after another. At the same time, her vitals remain good. It's all such a mystery. The road ahead is longer than the road we've been on for the past 2 months and the possibilities for outcomes are so varied. I'm told that once she gets out of ICU and into a place where there is a routine, and night and day, the mental aspects of ICU Psychosis will disappear. For now, however, watching my Mother suddenly disappear mentally, without warning seems more disturbing than all of the physical challenges she is dealing with. I sit beside her, holding her hand, hour after hour, watching her squirm like a two year old...frustrated and unable to express her needs and desires, mouthing through the tracheotomy, her arms flailing repeatedly into the air, involuntarily. I don't know how she can possibly heal when there is no rest for her. Sometimes she makes total sense, and other times she is speaking from a world that only exists in her mind. The best way to torture someone, is sleep deprivation. Apparently, spending so much time in ICU where care is 24/7 and day and night blend into one, is a sure way to enter into this world of Hospital or ICU Psychosis, a world where reality and imagination, combined with anesthesia and amnesia producing drugs, and pain killers, cloud the mind, and a patient can become unable to tell the difference between what is real and whatever delusions they are seeing.

At times, these delusions can be humorous, like the time I was sitting with mom and her right index finger was clicking up and down in the air. When I asked her what she was doing, she said, in an exasperated tone, "I can't focus to take the picture." I held her hand and told her to click the camera, and commented on what a great photographer she was. And another time, she angrily chided me to help her get out of bed, so she could get dressed for "the wedding." Other times, what she experiences is quite unnerving and painful to observe. She can squirm non-stop in her bed, shifting from one painful position to another, to another to another. I shift the pillow, change the bed angle, even sit her up in a chair, but there is no relief for whatever is gnawing at her inside. As time goes on, caring for her becomes more challenging for me, because there seems to be so little I can do to alleviate her anguish. "Where am I?" "What happened?" She will ask these questions day after day and not remember the simple explanations that I repeatedly provide.

I am so SAD! I miss my mom, and want her back! She went into the hospital for open heart surgery and while we knew this was a high risk surgery, because of her weight, we never expected this. I was prepared for physical complications, but I was simply not prepared to lose my mom this way. I spend hours each day, attending to her with no sense of accomplishment, and an overwhelming sense of failure. She wretches in her bed, mouthing, "help me, help me" and when you ask her what you can do for her, she has no idea. It's heart breaking to watch. She'll become exasperated, mouthing to me angrily to help get her up and out of the bed, forgetting that she can't walk and has not stood on her feet for weeks. Without knowing it, she grabs for her trach tube, or rips off her hospital gown, and when I'm not there, they have had to mitt her hands, which completely breaks my heart. I remove the mitts, but I cannot take my eyes off of her for  a moment. I'm drained.

Initially, after surgery, there was so much to be done. She knew I was there for her and she knew she could depend on me to get whatever it was she needed. But not now, not since the long-term effects of being in ICU have impacted her into a state of confusion and disorientation. I'm so sorry Mom. I just can't seem to take this pain away from you! I try to distract her attention, but being in one room for 6 weeks, day and night, 5 surgeries and numerous procedures have taken their toll on the woman who was so full of life. Her face is not the same face. When I look into her eyes, I will get an occasional glimpse of "mom," but for the most part, she somewhere far away, and so sad and frustrated. I'm losing her.

The good news is that if she can overcome these physical odds, the effects of living in a world with no night or day...will fade away, and she will most likely not remember the majority of this time. The bad news is she now has an anti-biotic resistant bacterial infection and the medication she needs may wreak havoc on her kidneys. So we continue to pray. We're off for another visit and my heart is very heavy. Will she recognize me when I walk into her room? Will I see the smile I know and love? I have to be prepared for anything. I also need to  be able to step away and take time for myself. The nursing staff takes excellent care of her. I have to accept that right now, there is not a lot I can do...except continue to surround her with all the love I have.

On a positive note, I visited my holistic physician for my follow up and there is definite improvement. Traveling makes doing what I need to do for me very challenging, but I continue to do the very best that I can do. I love you Mom! Please come back to us!!!

October 9, 2010
Back with Mom. We planned on staying a week, but another complication has extended our stay. Mom was moved to a respiratory rehab facility to help get her off the ventilator. This was not an ICU section and boy, what a difference in nursing care and attention. Don't get me wrong, many of them did a fantastic job, but there seemed to be a significant difference in the attitude of the nurses and how much care they were able to provide. There was also some opposing opinions between doctors and that is still driving me crazy! Surgeon and respiratory care insisted she had the wrong size tracheotomy tube. Her wound started oozing badly and they tried to do a debridement (another surgery), and we hoped that would escalate the healing of her wound. Instead, we got more bad news, her sternum was infected and they were sending her back to the original surgical team and hospital!!! I could not go home and leave her undergoing this surgery, so here we are. I have no idea how we are going to afford this financially, but I don't know what else to do! They opened up her chest again, cleaned it out to the bone and left the cavity open, covered with foam and inserted a vacuum pump to keep the wound dry and drain the fluids. It's pretty gross. I'm still wondering how they are going to close this up when they think it's healed. Apparently, they pull the pectoral muscles over her chest and hold it together, however, one pectoral was damaged in the original surgery... so the plastic surgeon is going to have to be creative! Meanwhile, her lungs still fill with fluid, so we are so not out of the woods.

Yesterday was a long and exhausting day, but also a very special one. They got mom into a chair. It's a big process to move a 300 plus pound woman with an open chest cavity, trach and assorted tubes and wires, but with an amazing hydraulic lift and 4 of us, we managed to get her comfy. The nurses said that I should be on payroll because I really try to help them all I can, with mom's care, and I have a new found appreciation for what some of these nurses deal with every day.

Today, I sat with mom for almost 3 hours, washed her hair, combed it, trying to get out the mangled mess from laying on it for a month, and finally had to cut out chunks of her hair...but treated her like she was in a spa. It was beautiful to see her smiling and relaxing and just enjoying the pampering. We held hands and laughed, and she napped peacefully too. When they moved her back to bed, the nurse gave her a shot of pain meds, and she was suddenly disoriented and had no idea where she was and why we were moving her. I hate those moments! Got her comfy, tucked her in and said goodnight. Came back to hotel to our leftover meal from last night and was asleep by 9:30 pm! I am so tired. My body is so sore and my fibro is starting to act up, along with my IC. I figure I'm not eating nearly as much raw as I want to, nor as alkaline, and I need to be more strict with myself, even if it means sticking to just smoothies and salads.  Praying today is a really good day with only promising news!!!

September 18, 2010
It's been a whirlwind here. My mom needed emergency bypass surgery out of state, and we  quickly flew off to be there for her. She developed bronchitis which delayed the surgery and extended our stay.  Watching a parent go through a high risk surgery is tough enough, but dealing with family members acting totally out of control, and making an extended visit from out of town even more unbearable, (an unaffordable ) is truly upsetting!

My mom requested that we extend our stay and appreciated the TLC and physical care that I was able to provide 8-12 hours a day. Her significant other was having a tough time coping, was breaking down in front of her before the surgery, crying constantly, and leaning on her, instead of being strong for her. He often disappeared from the hospital when a risky or uncomfortable procedure needed to be done and was not there for her when she returned to her room. I didn't mind being there to help him through this time, but when he blurted out to me, the day of her main surgery that he felt we were"taking advantage" of HIM, by staying longer, I literally almost blew a gasket! Yes, you read this correctly, by extending our stay, per my mom's request, to take care of her,  (because he couldn't) and crash nights in THEIR 3 bedroom condo, according to him, was taking advantage of him. I tried to explain to him that this was not about me or him, but about what my mom requested and needed. He raised his voice in the middle of the restaurant, and yelled at us, saying, "tough, this is what I want, and you can stay as long as you want to , just go to a hotel." Then he added, "I'm the King, I'm in charge and this is what I want!" I felt broken. I am unemployed, no income, and flying to Florida was a huge financial burden, but living out of a hotel? The hurt and sadness that her own boyfriend would make her request for me to stay almost impossible, broke my heart.

Trying to take care of my own physical needs and adhering to my new protocol, was difficult enough being at the hospital all day. But, we were there for HER. We also prepared extra meals, and froze extras for when mom came home. Trying to do this from a hotel room - almost impossible! I'm pretty distraught because I finally made a commitment to see my alternative physician, and I'm investing a lot to be under his care, and am now put in a position that makes it almost impossible to adhere to the protocol he has prescribed.

Then, we had my mom's car for a few days, and it died the day W picked me up from the hospital. I was so disturbed by what my mothers' BF did, that  I ended up in ER with my BP at 168/107, and was admitted for a few days for observation. Instead of towing the car to the garage, the BF had it towed to their condo.  I sat there at the curb in a wheelchair, stunned.  I had literally just been released from the hospital and and was now stranded, without a car. To add injury to insult, the BF drove right passed our hotel the next morning, to the hospital to visit my mother, never even thinking to ask if we needed a ride to the hospital, OR assistance getting a rental car. ($45 just for the cab to the airport to get a rental car). Sweet?

Mom awoke from her surgery and kept asking when I was leaving. She was obviously anxious and concerned about my going home. She as concerned regarding her BF's behavior. I explained that we really didn't have anywhere to stay and had to think about going back home soon. In a post-anesthesia stupor, pleaded with her BF, telling him that she wanted us to stay at her condo, not a hotel. He started to argue with her in ICU and raised his voice, the same way he did in the restaurant. Security removed him and he was warned that if he upset her again, he would be banned from the room, reminding him that SHE was of primary importance, not me or him.

I try to be forgiving, and understanding, and I know he was also under a lot of stress, but he showed no regard for what she wanted and needed, and  W and I were giving up everything to stay, and he worked against us, not with us. I kept telling him this is a crisis and families need to work together. He refused. I'm' having a very hard time with that and I feel very bitter towards him.

After 2 weeks, and several canceled flights, we finally arranged to come back to home to NJ. Mom started acting funky! I kept asking the nurses and doctors if something was wrong. I couldn't hold her attention, and her eyes could not remain focused on me for more than a second, and I was doubtful this was being caused by her medication. I'm trying to prepare in my own mind how to say goodbye to her and let her know I have to go home, when she went code blue on me!!!! NOTHING, ZIPPO, no response! I called for the nurses and watched her room fill with doctors, heard them announce a Code Blue Alert, and I stood in the hall alone and sobbing, wondering if this would be the moment that I'd lose my mom. It was a horrid experience and I'm still decompressing from it now.

They were able to resuscitate her, but had to re-insert the ventilation tube, and a feeding tube as she had not really eaten in ten days. All I know is that she is stable now, but I'm not there to see her, so who knows what that means? Leaving her was the hardest, most emotionally taxing thing I've ever done in my entire life!!!!!

Things were so crazy, after she coded, we were talking to the Doctor  and ended up missing our flight, almost getting our rental car towed at the airport, and finally making it onto a standby flight after waiting 45 minutes for everyone to board, and arrived at connecting airport only to see our flight was already boarding...RUN RUN RUN to catch it, and did. yay!.  It seems like every minute of the past two weeks has been stressful!!! So for two days, I'm in my jammies, catching up on email and trying to calm myself down, stay on top of mom's situation, decompress, and make appointments to follow up with my cardiologist and back to my holistic physician. Mom was first of course...but seriously...if I don't get myself in better shape, I'll be useless to her when she really needs me!

***By the way, my first visit with my holistic doctor was great! He must have spent 8.5 hours with us!!!!!! It was an exhausting day (literally the day before we left for Florida), and the news was pretty disturbing. I've still not had a chance to process all that he told me, but the results to the tests were not particularly optimistic. My body is a mess right now and the past 2 weeks certainly did not help things! However, he said he can work with me and while the progress will be very slow, ocer time, there will be progress!!!  I've never met a Dr. with such amazing "bedside manner," and patience!!!

Interestingly enough, with all of this bad stuff, my blood tests when I was admitted to the hospital in Florida contrasted remarkably to any blood work that I had prior to my going RAW!!!

Check this out:

                                            Before      After

triglycerides :                         293           155
Cholesterol                            274           198
LDL                                     184           132
HDL                                     31             35
Alkaline Phosphatase             164           146
TSH                                    806            1.25
Glucose                               113           102 (and then 99 later on)

I've only been doing raw about 9 mos now, and NO MEDICATION, and I was happy to see these results.  STRESS is my biggest enemy right now, and there seems to be more than enough of it to go around. My visit with my holistic Doc included a Heart Variability Test which essentially demonstrated that in the relationship between my parasympathetic and sympathetic nervous system, my system "has no brakes." That was just one of the many issues. Lots of stuff related to my mouth/teeth/gums, which will have to be addressed, parasites too!

The DITI picked up hypertension, and issues with my pancreas, kidneys, liver, stomach, and my entire energy system is shot. We have a lot of work ahead of us, so my momsie needs to get well, recover from this operation, and hopefully, I can focus on my healing and trying to be in a place where there is not so much stress.

For those of you that have reached out with your prayers and good thoughts, I thank you from the bottom of my heart. To the special nurses at Holy Cross (Cardiac ICU), in Florida (you know who you are) that held my hand and gave me wonderfully, supportive HUGS when I really needed them and took wonderful care of my Mom...THANK YOU and God bless you!

My next appointment with Dr. Elgarten is end of September. I will keep you posted. Meanwhile, I've got to get back to my better eating, lots of raw, and back on my detox baths and supplementation prescribed by my doc.  

The Jewish New Year and Yom Kippur have come and gone. The days were all a blur to me. I pray this coming year, while it has begun rather painfully, will get better and better. To good health, love, healing, and prosperity!!!! 

August 29, 2010
It's been really challenging the past month and I've not written much here. I apologize. I've been waiting it out until I could get to my doctor for the full physical and special tests he plans on running. I am happy to say that we finally closed on our house, and I've scheduled my appointment for September 1st! The visit will be a complete physical and a full body DITI. For more info on the doctor I'm going to see, click here.

I am really looking forward to this visit and getting some solid information on what I can do to get my health back. Ever since the Fibromylagia and CFS kicked in, I am in so much pain that I don't even notice the IC symptoms...that's pretty pathetic. So, prayers are welcome and I look forward to having some good news for you.

I am continuing to do 1 oz of wheat grass juice every day and it is not flaring up the IC. I'm hoping it's helping with my PH versus acidity, but honestly, I'm not sure at this point. I've also added Irish Moss to my daily smoothies. It's a pretty cool product and I even enjoy using it on my skin and in the bath water. 

I've gained back 4 pounds and I'm thinking it's the added stress pumping out more cortisol. I had stopped stepping on the scale because I had a feeling that was happening. My diet has been the same, for the most part, and I continue to force myself to walk at least 1 mile each it's distressing. Again, I'm hopeful Dr. Elgarten will help me find my way back "home." Will keep you posted...I promise! 

July 12, 2010
I wanted this part of my blog to be positive and encouraging, with a an outcome that would inspire you and give you courage to go where you needed to in your own journey. Sadly, I've been hesitant to write about this lowest part of my journey, as I watch myself deteriorate rather quickly. I don't really know if juicing had anything to do with this or not. I think it was coming, slowly and maybe trying to detox too fast, (as my doctor warned me), had something to do with it. I don't know. I'm clueless.

All I can tell you is I'm pretty sure I now have Fibromylagia and Chronic Fatigue Syndrome. Both of these are very common amongst IC patients. But for ten years, as bad as the IC was, I've not really been burdened with some of the other autoimmune diseases.

I've gone from bad to worse. My body hurts. I can barely lift my arms to brush my hair, get something out of the refrigerator, shower, get dressed, etc. My groin, thighs, shoulders and back are excruciatingly painful. I feel like I was hit by a truck or tried to run a marathon. I'm depressed because I've worked so hard to be healthy. I love raw food and I do believe it's probably a good thing I discovered it. But STRESS is the killer here. Yup. Right now, I'm under a bunch of it and I'm not doing a very good job of alleviating it. I'm in panic mode and it's compromising whatever immune system I had left.

I tried to go for a walk today with my honey. I ended up having to cut it short and by the time I came into the house, I burst into tears. I'm watching myself deteriorate. I'm watching piece after piece of my life get taken away. Just when I thought it could not get any worse, it did. Not sure how much more of this I can take.

YES, I know, I need to get to my doctor and that is part of the stress. MONEY. W's house is closing, but there has been one delay after another. We've been experiencing these kinds of things for 4 years now and it's just getting to the point where I'm really fearful. The very core of my biggest fear is security and that is being threatened. It's wreaking havoc on my life and now, my body.

I feel like I'm letting you all down by finding myself in this place. I do know that I will find my way back. I will figure out what is wrong...and I will HEAL! So, it's imperative for me to remain honest and to give you a window into my world...good, bad or otherwise. It's a little unnerving. I tend to be a very private person, so this is really a stretch for me.

I appreciate kind thoughts, words of encouragement, and prayer. I'm just a "little" down in the dumps right now and really grieving the losses in my life, and I am allowing you to bear witness to it all.

Blessings to those of you that actually take the time to read this. You are in my prayers as well.

Hopefully good news will follow....soon!

June 29, 2010
I felt sooo awful, so I stopped juicing totally and went back to my smoothies. I realized that when I was juicing, I was not adding hemp or flax or chia to my juice. I wonder if I was not getting enough nutrients. It's been 2 days and I am feeling 80 percent better!!!! Whatever it was...I'm better than I was a couple of days ago...still not quite myself. Hopefully better tomorrow. I can't wait until I can get in to see the Doc.....The Universe seems to be conspiring against me here!!!

June 27, 2010
Hmmm. So I juiced for over a week, and I really liked the way it tasted and felt. I was consuming way less "sugar" by only adding 1 apple to my veggie juice. My juice was mostly, cucumber, dandelion, kale, parsley, ginger, apple, and celery. I don't know what happened, but I feel like I'm 90 years old!!!! My doc told me to only juice once in a while and silly me, I figured since I was not fasting or feasting, but still eating a regular, mostly raw dinner, that switching my smoothie to a juice would not be a big deal. Almost immediately, my shoulder started to bother me. I've never had shoulder problems before, but then it went to the other shoulder, which I can barely even lift, and along with that, my back, my groin and my legs. I ACHE deep into the muscles. It feels like lyme's disease or severe arthritis. But it's all over. I don't know why. The only thing I can think of, is that all of the goodies and super foods I put in my smoothie, I was not adding to my juice, it was just juice. I also developed some sort of lymph node infection in my neck, which left me feeling really lethargic. So I'm taking a break from juicing, and going back to green smoothies. Sitting here drinking it now, and I have to tell you, I prefer juicing! I don't care for the rich, thick smoothies with both fruit and veggies so much any more. I really liked the refreshing consistency of juice. If I make a smoothie out of the same things I juiced with, it tastes gross....

I'll give it a few days back on smoothies and see how I feel. I'll find out Tuesday when I can reschedule my doctor appointment, as I'm really looking forward to getting this testing done and seeing what he thinks. I am clueless right now, frustrated, and confused. So many people have great reactions from juicing and restored health. Not me and I was warned by two practitioners that I should not juice. I've not tried wheatgrass yet, and I would like to. But right now, I want to at least get back to where I was before all of this nonsense with muscle aches.

June 19, 2010
Sadly, I had to postpone my Dr. appointment and testing, and will hopefully be able to reschedule it the following week! Meanwhile, I've really been itching to JUICE for awhile. In the past, I did not have good luck with it. I thought if I was really careful with my ingredients, that I could do it? What's the difference, except a little pulp, right? WRONG! I've tried juicing for two days now. I kept it simple, cucumber, celery, kale, dandelion, apple, ginger and lime.  I think ginger or lime caused a problem. The second day, I eliminated them both, but still had a pretty severe IC reaction and PAIN. 

I'm trying to listen to my body, but it's so confusing. On one hand, I FEEL SOOOO much better juicing. It really takes you up to a whole new level. My head is clearer. It feel like the cobwebs are gone am more alert, more present, more peaceful and more energetic. BUT, on top of that, the first two days, my bladder was R A G I N G. I was urinating every 10 minutes, and it hurt. I'm stubborn and I don't give in easily, so I'm thinking, maybe I just have to keep it really simple, add something anti-inflammatory, and just keep it up, but also mix with other food. But I did that when I tried alkalized water and wanted to DIE! I realize I cannot drink alkalized water because the process involves adding minerals. IC bladders often do not like minerals...and it can irritate the bladder and urethra. I only drink Reverse Osmosis water now, and that works great.

So, I'm now on day 3. I just finished my morning juice, dandelion, cucumber, celery, apple, and added some papaya as an anti-inflammatory. I can feel some burning going on, but so far, it's not quite as intense as it was yesterday or the day before and I'm not running to the bathroom, yet. It's amazing, because with juicing, the sensation is almost immediate! And, I noticed as the day goes on, the symptoms ease up, but when I juiced the second time in the afternoon...BAM...flareup! I'm going to go drink a bunch of water to dilute what's in my body and see how that goes.  Will keep you posted!

June 11, 2010
I've not written in a while. Not much to tell really. I'm excited because I was finally able to make an appointment to go see my holistic physician. I had to put it off due to finances, and it really limited what he was able to do for me. So, Jun 21, I go for about 5 hours worth of testing, including DITI, which is Digital Infrared Thermal Imaging (full body). In addition to that, he'll run several other tests. I'm hoping this gives him better insight into what is blocking me from getting well, and we can move forward. Say your prayers for me. I'll definitely keep you all posted with progress.

April 28, 2010
Looking Within, Coming Out, and Cracking the Code 
As most of you know, I've not only struggled with weight loss, but have struggled with regaining my health and eliminating Interstitial Cystitis from my life.

I was feeling really frustrated listening to folks talk about juicing and green smoothies and how it ramped up their weight loss and/or cured their illness. For whatever reason, those protocols were not working for me, and I cannot imagine that I'm alone.

What I finally realized is that BOTH, IC and Weight are merely SYMPTOMS, and indications of something bigger going on in my body. When I fix whatever that is...the other things will fall into place. Trying to do everything was confusing and and even conflicting.

(Note: for those that don't know, IC is a debilitating disease that effects the bladder and pelvic floor. It's also known as Chronic Pelvic Pain. It is a very difficult disease to treat, and there is no known cure.)

For example, there is an IC Diet, which lists a bunch of foods that MIGHT cause irritation or flareup for some. Over the past decade, I've not paid too much attention to that list, because there are so many variables. Also, that diet is not focused on cure. It's a band aid in an attempt to avoid additional flareup, and once you learn what foods are triggers, you can help avoid additional pain. But it's not a program that works to heal the body. It's more like taking an aspirin to get rid of a headache.

Then, of course there are the variety of programs that different raw food groups support and promote for weight loss. These may or may not work for you... if you have a chronic health ailment, this may not be where your attention should be. (Raw food certainly is wonderful and can aid in getting healthy...but which raw foods...fruits, veggies, nuts, seeds?). Everywhere I turned, I was hearing a different story. So, I tried them all...

In trying to focus on both weight loss AND not eating foods that might flareup my IC...I was moving away from things I needed to do to restore my health. IF that's not enough, an additional challenge is that going thru healing can sometimes trigger a flareup. Trying to eliminate toxins too quickly when there is systemic inflammation, can be torturous. It's hard to know at times, if it's good pain or bad pain you are experiencing. That's when a good practitioner comes in handy!

I am now listening to my doc and focusing on restoring health, opening up bile ducts, eliminating inflammation,etc, etc. There are many things my doctor was having me eat that I worried would cause weight gain. Meanwhile, when I started on his program, I did lose 22. pounds.

Once I stopped his program and started doing Green Smoothies, and eliminating some of the good fats my doctor had me eating, I started to GAIN weight back. YUP! I listened to folks tell me that nuts and nut butters are too high in fat, along with coconut oil, tahini, etc. So I eliminated many of them. I did go off fruit and sweets for 2 mos...per my doc. (I lost no weight, but probably did clear up a bunch of candida and it was a necessary step in my healing path.)

So now, I'm listening to MY body. My program suggests up to a cup of raw pecans for breakfast, which I had stopped doing out of guilt and hearing what others were saying about weight loss. (I get my nuts from a supplier where they are tested for mold, and I know they are REALLY raw.)

My doc believes that aflatoxins and mycotoxins from many packaged foods (including nuts, seeds, supplements, and many other foods) are a major cause of illness. So I've been focused on really eating clean and eliminating THOSE toxins from my body. Most people don't really pay attention to these things and I realize that I may be forging unpopular territory here in the raw community.

In listening to my body, I get quiet every morning...and before breakfast, I ask what it is I need. The pattern so far seems to be alternating breakfast and lunch every other day.

One morning, I"ll do raw pecans, and a big salad for lunch. I also, per my doc, include 1 cup of celery OR parsley (or combo), plus 4-8 asparagus spears daily, which really serve to CLEAR things out, big time. (I've never been so regular. I actually was "backed up" when I started doing green smoothies). Then I might add a small green smoothie later in the day, but not always.

The next morning, I do a green smoothie and a large salad for, or with dinner. (no nuts that day, unless a small amount happens to be in my dinner recipe..I don't really obsess about it).

I also consume, 1/2 cup of cooked jasmine rice (also clean from my source that tests for mold, because rice can be very moldy), every other day, with 2 - 3 tsp of Ohsawa Nama Shoyu(from same source). These products are not irradiated as free of mold as possible. (This was a regimen my doc had me doing twice a day for several months when I WAS losing weight).

For the past 3 mos, I had been gaining or holding weight and now and in the 3 days since I've started this rotation diet, I've dropped almost 2 pounds. That's a lot for me, but time will tell.

Meanwhile, I feel better, because I believe refocusing my goal will help me choose the foods my body needs to get well, and in getting well, I will lose weight.

The reason I'm writing about this is because I know there have to be other people like me out there that feel frustrated and lost, that feel like they are failing or doing something wrong and wondering why these programs work for everyone else?

I want you to know that what I'm doing may not work for you. Listen to what others tell you and gather information, but if you find something isn't working, tune into your own body and discover what will. It certainly helps to have a practitioner that knows his/her stuff!!!

I"m also on some incredible supplements that are made from raw/fermented/predigested nutrients. Pricey, but at least I know they are not riddled with mold, as many supplements, especially synthetic ones, can contain toxic molds that do more harm than good. (How many companies actually test for this once the product is manufactured and on the shelf?)

I've also started adding some additional good fats back into my diet. The mornings that I have my smoothie, I am adding 1 Tbsp of nut butter, 1 Tbsp coconut oil, sunflower lecithin, and raw halvah(sesame seed paste with raw honey). YEP, I can see the jaws dropping and the eyebrows raised. Guess what, I feel better. I have more energy again,I'm regular, my bloating went back down, and my IC symptoms are not gone, but more mild than they were on green smoothies, (which flared me up big time!!!!) And, I've lost some weight.

I do have to be VERY careful with green smoothies and limit which greens and fruits I use. So far, for me Kale and bananas(altho high in sugar) WORK! flareup. I can handle mangoes once or twice a week, along with papayas. No pineapple or pears at this point, along with many other fruits.

When I see my practitioner next month, things should move along more quickly because he can run some extensive tests that I really need to have done so he can fine tune my program even more.

While I am so grateful to all of the wonderful, well-versed people that have helped me discover my love of RAW food, I'm also thrilled to finally feel confident enough in myself to branch off, take what I've learned, and combine it with what my doctor says ...and what my body is telling me.

It's really an amazing journey. We just need to keep our hearts open and not measure our success or failure by what others are doing and experiencing. Listen to your body. If you don't feel something is working, maybe it's not, even if it seems to work for a majority of people. You don't generally hear from the ones that had no success, because it's hard to publish something that negates what others are saying. I'm here to say that it's okay to recognize something is not the end all be all for YOU and be happy that there is something for everyone. We need to keep the judgment out and the LOVE in!

I once felt guilty coming out and saying, "Wait, these great smoothies are not working for me the way you said they would, and I know I can't juice as it flares up the IC." I felt alone. I couldn't be part of the successful "juice or smoothie crowd." So many group initiatives getting started and watching all of the wonderful people succeeding...and feeling like I had no where else to turn.

Now I am comfortable. I LOVE and look forward to my green smoothies!! I just need to drink them about every other day...and I openly and with love embrace the cooked rice and nama shoyu that my doc prescribed, because it's helping in a way I can't even explain. I'm not gonna worry about it any more. And, adding healthy FAT back into my diet is working, even though it may not make sense to those who need or choose to avoid the high fat raw foods.

Do whatever YOU need to do to get healthy. That is all we can wish for...for ourselves and each other. I wish with all my heart that if you are struggling you find your way, whatever way that good health and a sense of well being. And, I wish the same for myself. Will keep you all posted!

I hope to have more good news for you as I move forward on this journey.

With Much Love,

April 25, 2010
It's very difficult for me to publish this because it's so personal. I feel very exposed, very vulnerable.  However, I think it's important enough that if it resonates with just one person, and helps them, it's worth this feeling of vulnerability... as I push the PUBLISH button.

I've been struggling so much, with not only losing weight, getting healthy, and eliminating the painful effects of Interstitial Cystitis, but with listening to so many different opinions of how others have done it, and having those things not work for me.

For many of us, THE SCALE seems to be the end all, be all measurement of success or failure, and we tend to zoom in and focus on that. This has caused me so much frustration because I diligently follow a program to the letter, see little or no results, try another program, and another, with little, if any change. It is downright frustrating!

My holistic (MD) practitioner keeps reminding me to STOP focusing on the scale, and focus on doing what I need to do in order to get healthy.

Through my frustration, I was dwelling on my inability to lose weight. Upon reflection, during a quiet time early this morning, I had an AHA moment. I suddenly realized that while I REALLY want to lose my weight, these unwanted excess pounds are merely a SYMPTOM of something bigger, and not THE THING that I should be wasting energy obsessing about. 

With holistic medicine, we focus on, and treat the whole body, and get to the root of a problem, rather than simply treating the symptom.

Well, in my case, and I suspect, with more folks than not, being overweight is a SYMPTOM of something bigger going on in the body.  We can chase our tails, and try this diet or that diet, and this combination of foods and that combination, but until we get to the root problem causing our SYMPTOMS, we will never truly heal. We may spend our time and energy treating the symptom superficially, the same pattern over and over again, never eliminating the root cause.

I hope that makes sense. For some who need to lose a few pounds its not a big deal. However, if you suffer from chronic illness, and obesity happens to be one of many other symptoms, perhaps my doc is right in telling me to STOP looking at the scale, and to focus on getting well...the bigger picture!

I'm understanding that my liver and blocked bile ducts are impacting my health, including my metabolism. Until I clear that, losing weight is probably not going to happen, and even if it did, the underlying PROBLEM would still exist and manifest as some other chronic illness. There is also inflammation, which makes detoxing challenging and even, according to my practitioner, "torturous." if done incorrectly. 

As a side note, trying to detox too quickly, when there is inflammation, and the liver is already overtaxed, can result in far worse consequences. Because of inflammation, toxins get backed up. The liver may not be able process the toxins trying to exit the body so quickly. The burden then falls on the kidneys, and even the skin. (which for IC folks, means the bladder!). This is why some of us should avoid rapid approaches to cleansing. They're great if you are healthy and just cleaning house, but if you have chronic inflammation, you may want to avoid that approach for now or seek the advice of a real  health professional who understands chronic illness.

So, I woke up  yesterday morning to a sense of doom and gloom. The scale, yet again disappointed me. My IC was in flareup. Through my very core, I felt sad and angry. I cried most of the morning and felt out of control. It was a frightening experience (although, not a new one) and sent me into a downward spiral for several hours.

At some point, I managed to take a deep breath, step back from the emotions, and gently observe myself. There was no REASON, no THING attached to my anger or sadness. There was just RAW emotion. And then AHA - I remembered that anger is connected to the LIVER.

After all, it is the liver's job to detoxify the blood on a physical level and it also detoxifies the emotions on an energy level. In Traditional Chinese Medicine, the emotion anger relates to the liver, (organ and meridian). It is the liver's job to clear anger. 

So, it seems obvious to me that our emotional/hormonal state is strongly impacted by the LIVER, which long ago was referred to as the "seat of the mind."  It's possible this is part of my detox process as things are clearing. It's possible it's still just a symptom of the blockage, or underlying root of my problems. Either way, it gave me clearer insight into so much of what I've been feeling and why.

I truly need to surrender to this healing process and stop being blindsided by THE SCALE...and stop measuring my success or failure by that number.

I am working with a Doctor who has a lot of experience in this field and knows his stuff. I have to put faith in him and this process, and know it's the bigger picture that counts.

I am not diminishing the fact that the scale can be an important tool for many who weight may be their primary concern. However,  we can't forget that for many of us, weight is merely an indication of something larger. 

If we stop and focus on that alone, we are missing the whole picture and we end up imitating what Western Medicine is often guilty of, and that is to treat the symptom, and not the cause.

For this reason, there may be times where following a diet to get healthy, may conflict with what you would eat or not eat in order to shed pounds. This is where I've been running into problems and driving myself crazy. I've been trying to kill two birds with one stone. It's time for me to decide which goal is more important in the long run, and focus on that one.

Getting healthy is my number one priority, and this may require that I eat foods that may not initially help with weight loss. I do believe, however, and my doctor assures me, that when my body is healthy, the weight loss will come with much less effort.

I pray that I have chosen the right path, and that we each find the path that works for us.  We are each unique, and what works for one does not necessarily work for all. It could actually be detrimental to try what worked for someone else if you don't really understand what is causing your particular problem. This is why if you have a chronic illness, it is important to seek the advice of a health professional.

for me, it really is time to be kinder to my body and kinder to my soul. It's time to listen to my Doctor, continue to feed and nurture myself, focus on overall health, and stop worrying about weight.

I AM getting better, little by little. I am sleeping through the night unlike the 2 or 3 hours I was once lucky to get. My overall complexion is noticeably clearer. Skin tags and blemishes are literally fading and disappearing. The majority of my GI symptoms, especially acid reflux and bloating , are gone. I am increasing my physical activity and walking almost daily. I know the day will come when all of this will be far behind me. I will not only be comfortable in my body and with my weight, but I will finally and forever, be IC FREE!!!!

Thank you for taking the time to read this. I am grateful for your interest and presence in my life. If you too are suffering from a debilitating illness, I truly pray you too find your way back to health.


April 21, 2010
As you know, I'm on a mission to eliminate the debilitating symptoms of Interstitial Cystitis from my life. However, my personal approach is to treat not the IC, but my entire body. We develop chronic illness when our immune system and/or other systems in the body have been stressed and compromised. To regain health, it is my personal belief that we have to focus on detoxing, healing, cleansing, and encouraging the body to regenerate and renew. We are capable of doing this. Finding the right path is the challenge.

I tried the so-called IC Diet for many years, and while it was helpful to some degree in warding off flare-ups, it did not eliminate IC. For me, it was a band-aid.

I'm currently working with a wonderful holistic physician in an effort to repair my body so that it can regain it's natural ability to heal itself! It was my personal choice to discontinue any suggested IC meds years ago. When I saw the side effects I experienced and recognized that none of the drugs "cured" IC, but merely masked my symptoms, I decided there had to be a better way. If you have chosen to take prescription drugs, do not be dismayed. It's all about personal choice and I am judging no one. I took the meds for many years and did not get better or feel better, and I had to stop and choose another direction with hopefully better results.

On this journey, I've found many wonderful, knowledgeable people with great advice and suggestions on how to lose weight, increase energy and get healthy. There is great information out there and passionate people with experience providing it.

What I've discovered is that there is no quick fix for my IC and that I can possibly cause more harm than good attempting to try this. My doctor, combined with my own experiences, have told me to stay away from quick cleanses or flushes. Everything I state here, is for me and my own personal findings. Each of us has to find their own path back to good health. However, I have gone through a lot of tears and frustration trying other people's suggestions and failing. I come out of the experience wondering, "what is wrong with me?" "Why does this work for everyone else, but I'm not successful?"

I've spent a bit of time meditating on this, and I've talked to my practitioner as well. I have to let go of the expectations that what works for other people is going to also work for me. There are reasons why I don't lose weight. There are reasons why my IC is not in remission. I don't over eat. I do exercise. I eat very healthy, and yet, I gain weight, or don't lose weight, and I'm still not cured. I've been doing green smoothies for close to 2 mos. and actually gained a pound. I don't think I'm the only one out there with this problem. I've been doing raw for 6 mos and while I initially lost 22 pounds (now 20), I have not lost any weight in over 2 months! (and if you are wondering, I've got about 50-60 more pounds to lose).

It's time to open up my heart and soul, to let God in, to listen to my own inner voice and intuition. It makes sense. If you have a toxic body and suffer from chronic illness, a quick flush or cleanse for some of us, can cause more harm than good. Trying to excrete or eliminate powerful toxins at a rapid rate when your body is not able to process normally, can cause more stress to your body systems. I have adrenal fatigue. My body interprets almost everything as stress. Exercising sends a message to my body that something is wrong. My body, trying to protect me, goes into fight or flight, produces cortisol. This turns to insulin and insulin, to belly fat!!! Everything I do, I must do slowly.

I started green smoothies, thinking, it's not juicing, it's more mild, great. NOT! I suffered a serious IC flareup. In re-evaluating, I realized that there are only a few greens that I can tolerate, and only a few fruits as well. I've gone back to a very limited variety of these food and am sticking with them. My flareups have subsided for the most part!

I love the idea of green smoothies and want to continue. I am envious of those that can drink green smoothies and lose weight. That is not the body I live in. I need to take a very slow and gentle approach to healing. There can be no rush, force or push. It's about PATIENCE and LOVE and NURTURING. No blasting this body with a quick flush or cleanse. I know what my body can handle right now. What is good and healthy for a normal person, is not necessarily so for me or you.

We are all unique and wonderful in our own way. When someone finds something that works for them, they naturally become exuberant about it and assume that if it worked for them, it will work for everyone. And it may work for a lot of people, but not all. If possible, I'd love to save some folks like me the feeling of disappointment and failure when a program does not work for you.

LOVE your self and your body...and really try to listen. If you suffer from IC or other health ailments, and you think you may have adrenal fatigue...take it slow! Be kind to your body and gently and carefully nourish it. If you try something and it is not working for you, don't become disillusioned. Whatever you try, START SLOWLY, one step at a time. If it doesn't work, take a deep breath and keep going...maybe like me, at a much slower pace!

For now, I'll continue green smoothies and certainly continue eating raw. I believe it is an incredible path to good health. But I have to recognize that there are underlying problems in my body that are literally keeping me from getting well..and losing weight.

My own Dr. has told me to stop looking at the scale, and focus on getting healthy. I need to go see him and get a battery of specific tests that will better pinpoint what's going on in my we can move forward. He said there may be some "viruses" that are impeding my success. So, my unemployment ran out, and funds are limited and I don't want anything to hold me back from getting well. I continue to do ALL that I can do to help me and keep an open mind and heart. I'm praying for guidance and help and I'm being kinder to myself and accepting my turtle-like pace. It will come together. I have faith! This is all part of my journey and I need to embrace it all and not judge it as good or bad.

Meanwhile, I'll avoid the cleanses, fasts, feasts, etc, and continue to put good, healthy, living foods in my body...keeping it simple and using ingredients that don't cause me more discomfort.

For those of you with IC, I've included many recipes in my blog. I know they don't all adhere to the standard IC Diet. These are foods that I have prepared that seem to be okay for me. Each of you will have to determine for yourselves what works and what does not.

I just hope that instead of focusing on avoiding so-called IC foods to eliminate a flare-up, that you begin to take a broader approach and look at the whole body...and what has gone wrong within it, that allowed you to get IC (or any other disease), and see what you can do to begin to NOURISH that body, so that it begins to repair itself.

It's a different perspective and it feels like a more active approach to me. Instead of "protecting" the disease with a band aid, feed your body, strengthen it, and believe that it can eradicate the disease.

My heart goes out to all of you who are suffering. I pray that whatever your aliment is, that you will find your way to good health and vitality.

Why am I writing this? I have been maintaining my blog in the hopes that I would find "the way" to cure IC and that I could help others. As time has passed and I'm still not cured, I began to feel sad and concerned that I would give anyone false hope and send them down yet another path of disappointment.

Today, I realized once again - this is about the journey, not the destination. I am learning many things about LIFE and about this body I live in. I am learning about PATIENCE and KINDNESS to me, Barbara. I am on a journey and I believe I have something valuable to share with you. I may not offer you a cure and what I have to say may not be the end all, be all. But perhaps, I can make your journey easier, by simply reminding you to be patient with yourself and your healing process. Don't ever give up and don't ever accept the term "incurable disease." I was told that over ten years ago, and I did successfully get my IC into remission for a few years, by actively changing my lifestyle. It is possible!

I believe we are given challenges in our lives that teach us something. I know that this illness has forced me to SLOW down and really examine my life. While I may not be cured, I have certainly found a JOY that I did not know before. I have a new found passion for food and food preparation. I put love into everything I prepare, and am grateful, and I believe this too, is one of the most powerful healing "substances" that we can give ourselves... L O V E.

I send you all a warm and loving hug, a gentle hand, and a caring heart. If anyone has questions or concerns or comments please feel free to contact me privately. I'll do my best to respond.

If you read my blog, make sure you read the PAGE sections, located in the TAB section at the top of my blog.

Many blessing for a gentle recovery. May you embrace life and all it has to offer.

April 16, 2010
I've been doing green smoothies every morning for a month and experienced IC flareup. I have not lost any weight in 2 mos. I know it's due to adrenal fatigue and I'm not going to lose a lot of weight until my adrenals are healed. It's frustrating, but the recent IC flareup has me down. Ya can't eat much healthier than I am now. I tried cutting out fruits and all sweets for 2 mos - no weight loss. I went back to fruits and cut out some of the high fats - no weight loss. Now, I'm eating some fruits and adding some fats back in and we'll see what happens.

I've limited my green smoothies to kale, romaine and one or 2 leaves of chard. I can't have pineapple, and mangoes seem to be giving me an allergic reaction. Grr. So, I'm doing smoothies with bananas, greens, a couple of dates to sweeten, nut butter, and organic coffee extract. I need to drink a lot of water all day.

I'm on some different supplements this week. Some new ones are coming out that may help with allergies. I feel like my body is one big allergy!! IC means I have MAST cells in my bladder which are made up of histamine. When the weather gets bad and sinus allergies kick in, I notice my bladder is screaming too! I am just getting so down between not getting rid of IC yet and not losing any more weight.

I have to stop and look back. It's been under 6 mos and I'm down 22 pounds and I'm sleeping more than 6 hours a night. Those two things are pretty huge. My skin is so much clearer than it was.

I'm going to stop weighing in every day, and try to let go for a little bit and just see what happens.

I did start adding some GOOD fats back in. Some people say that coconut oil is really good and helps with detoxing. So I am putting about 1 Tbsp of it in my smoothie in the morning. I am noticing that the recent constipation is easing up.

April 8, 2010
The past few days have been gorgeous! Last week was not so good. I wasn't sleeping again and felt really run down, spacey, and my IC was flaring terribly. We had to travel to visit relatives, and I had some urgency issues going through Philadelphia. Having to find a bathroom quickly caused some real pain and stress. I did spend Easter with my oldest daughter, son-in-law, cousin and of course, my baby doll granddaughter. That was a thrill. She now knows how to say, "Love you!" Melt melt!

Back home, sleeping really well the past few nights, and started walking yesterday and today. It felt good to get out again. I'm going really easy on myself, not pushing too much too soon. I have to really slow myself down, because I'm an all or nothing kind of person.
So, sleeping, walking, IC is calming down..good stuff. I've been doing green smoothies with papaya the last two and days did a bit of research to find out they have a lot of anti-inflammatory properties. I'm wondering if they're helping cool things down a bit...? We'll see.

I'm still doing at least 1 green smoothie every day, but trying to choose mild greens and fruits to keep things calm. I gained THREE pounds while away and happy to say, most of that is gone since I'm home.

I did eat some SAD foods. My daughter had Alaskan king crab legs - and I was not turning those down. I only had one and also tasted a piece of London broil. I did bring my own raw veggie casserole and a dessert. I also made some raw chocolate so I'd not be tempted. It worked! I was prepared and really only went off a bit, but avoided all sugar and sweets. Being prepared really makes a difference. I have no willpower when I'm out, so if I bring something, I'm usually ok.

Get this, my daughter called last night to tell me how delicious my dessert was. She kept the leftovers and when she got to taste it again,realized how super it really was! She even asked me if I'd make individual mini squares for Charli's 2nd birthday party! Now that is amazing! Jessica asking Mom to make a RAW dessert for her daughter's party. That is RAWfully amazing!

March 21, 2010
In addition to enjoying a green smoothie every day, I've started some brisk walking. The weather has been so fabulous. I walk and then come back, stretch, and enjoy a new smoothie. I experiment every day with something different. Today's smoothies was really GREEN, with on an apple and dates added to sweeten, and I enjoyed it a lot! The good news is that so far, even though I'm walking at a fairly good pace, the IC is NOT hurting me while I walk. Don't get me wrong, I feel my hamstrings, my back, and the effects of being a relatively inactive person for the last year, but not my IC!! This is good! Usually walking is a challenge for many ICers. For me, I have constant pressure on my bladder, abdomen, and pelvic floor. I am so happy to be walking relatively pain free.

We had dinner at a friend's house last night which was challenging for me diet-wise. I did give in and eat some SAD food, but back on track today!!I don't beat myself up anymore. It's about balance. I'm not competing for some raw food marathon. I'm trying to turn my life around by changing my lifestyle, and I've certainly done that! An occasional SAD (Standard American Diet) meal is fine. It's the overall picture that counts, and I do believe it's about balance and being phobic about anything is not healthy.

March 19, 2010
Big changes! I started adding GREEN smoothies to my diet about 6 days ago! I feel so much energy that it actually kept me up a few nights. I need to make sure I drink them early in the day, and not later on, at least for now.

I am feeling some IC discomfort, which concerns me, but my intuition is telling me not to give up. It's a lot of greens for my body to handle right now. I know that I can't juice yet, but I'm determined to get these good, green, live foods into me one way or another. In addition to doing at least 80 % raw for the most part, I'm boosting this by using smoothies that are packed with more greens than fruit.

If you have read my blog, you'll know that I have Interstitial Cystitis, which is a debilitating disease I was diagnosed with 10 years ago. There is no cure, but I did manage to get it into remission many years ago when I ate vegan. I am determined to eliminate it from my body once and for all! I also recognize that there will be some major detoxing, and adjustments to my body. A lot of ICers avoid certain foods and follow an "IC Diet" which may help lessen flareups, but I am not sure it "cures" IC. Some of the foods on my diet may appear to them as foods they are not allowed to eat. I am treating the WHOLE BODY, not just IC! We have IC because our bodies are not functioning optimally. We have to treat and heal the body, not the IC!

Yesterday I had some bladder discomfort, frequency, urgency, fullness, pressure. It's not good! However, I've decided that I'll dilute my smoothies more and instead of twice a day, for now, I'll stick to once a day, for breakfast. I've had my 6th green smoothie this morning, followed by a lot of water, and so far, I'm doing great!!! Will keep you posted!

March 12, 2010 - Time for a Change
I've been feeling it lately, but today I hit a brick wall and was feeling really frustrated. It's time for change. I started out saying that I was transitioning to healthy eating and trying to incorporate more raw into my diet. I've enjoyed exploring all of the wonderful foods. It's been a blast. And I've enjoyed the weight loss that came with the first part of this journey.

But, the weight loss has stopped and while I do feel better, the Interstitial Cystitis continues to plague me. I think it's time for a change. Like most new raw foodies, I've enjoyed finding the fun, sweet treats, and showing my friends how yummy raw food can be. I'll certainly continue to enjoy those foods for a long time, and share them with you, but, I need to shift my focus. Change is a good thing, forcing us to expand our boundaries. So now, it's time to go more GREEN.

Thank you Susan from Raw Food Rehab for the big hug this morning when I so needed it, and for the loving nudge that has inspired me to take another leap. Yep, I'm going to focus on GREEN GREEN GREEN! Expect to see some delightful new recipes, more smoothie variations, sprouts, salads, and other surprises.

Not to worry. I still enjoy desserts and treats. I just need to learn how to balance them and eat enough of the right foods that are going to nourish my body and catapult me into a healthier place. Treats are still "treats" and they need to be consumed consciously. My body is not really ready for juicing, and I am not so sure how I feel about juicing yet. I think about it, but both of my nutritional gurus said "No" to juicing for me. But, I am going to focus on getting more greens in my smoothies. I wish I had a Vita-Mix...but for now, will have to make due with my good old Krups blender. Wish me luck!

March 10, 2010
Grrr. 4:30 a.m. and here I sit after 2.5 hours of sleep. I was doing so well with sleeping and I'm not sure what's going on. Due to the ear infection, my whole protocol changed. I am starting back up on supplements I had stopped and I'm not sure if my body is readjusting or what?? It's frustrating. I was feeling so much better with regular sleep.

Weight loss is slow. I am holding at -22 pounds. I expected to have lost more by now. Doc has said I can slowly introduce fruit back into my diet. This makes me VERY happy, as I have not eaten any fruit in clost to 2 months!

I have noticed a shift in my eating. I'm eating far more raw than I had before! W and I both still enjoy the taste of cooked foods once in awhile, but there is a huge difference in how we feel when we eat raw, compared to cooked. With raw foods we never feel stuffed or bloated. We both feel satisfied and light, energetic, even after a big meal. It makes me want to strive harder to keep adding more and more raw into our every day diet. At this point, I think I am probably about 80 percent raw.

February 14, 2010
Happy Valentine's Day? I am really in a funk the past few days. I HATE INTERSTITIAL CYSTITIS!!!

We actually went out 2 days in a row which is a very rare occurrence. I am not sure why, but my symptoms are seriously exacerbated! I'm wondering if it's going out and wearing jeans twice this week. When I was first diagnosed with IC 10 yrs ago, I didn't wear anything but sweats for several years. I remember praying to God that I'd be able to get into a pair of jeans again. When the IC went into remission, I was thrilled just to be able to wear my jeans again. I haven't thought about that time in so many years.

I've lost about 17.5 pounds so far and fit into a pair of nice brown jeans that I haven't worn in years. They are definitely snug and not stretchy like some of my other blue jeans. I am finding that sitting straight up in a hard chair for several hours causes pressure on my pelvic floor and bladder. Since we were out 2 days in a row, I'm wondering if there was more pressure than usual? I don't know. We even went out to eat last night to the Round Grill, (about the only place I could find something to eat)...and I was almost in tears in the restaurant. I couldn't wait to get home, and get into my sweats.

(For those of you that don't know, and haven't read previous posts, Interstitial Cystitis is a hideous disease that causes a deterioration of the bladder lining. It's usually partnered with pelvic floor pain/dysfunction and often other auto-immune issues.) YES, it impacts very personal aspects of my life and that is something I am trying to deal with day to day. For more info on this, go to the IC Network.

Sooo, back to yesterday, we were at a gathering with some friends and my eyes kept welling up with tears. This is the 3rd time this has happened and I finally realize why. At home, I'm not exerting myself. All of my energy is going to my body resting and healing. When I am out, it hits me like a ton of bricks just how tired and weak I am, and then I feel so very sad and disconnected from everyone. It breaks my heart because I realize the part of me I've lost. I tried to put on a smile and socialize, but inside there is a sense of being disconnected. No one has any idea how much pain I am in and I probably appear anti-social. Typing this is stirring up so many emotions, and once again, I find myself in tears. . Mourning the loss of "me" is very painful. And yes, in the process of losing me, I've found so many beautiful parts of myself, parts that for now, only W has seen, parts that would never have evolved if I had not gone through this crazy ordeal, and for that I am grateful. But when is enough enough? When do I stop fighting to get well, and just resign myself to being this way? Take some pain meds and call it a day?

I wish my daughters were more connected and could see the changes I'm going through. Instead, I think they hate the IC as much as I do, because I'm sure they resent it and me. They probably felt they lost part of Mom 10 years ago, and there were many times, I couldn't be there for them the way I would have been if I were "normal." I feel resentment more strongly from one of my daughters and she actually said to me, "You have too much free time on your hands, you should get a job or volunteer." It was a shock, but also alerted me to the fact that she still has not accepted how debilitating this disease is. How heavy my heart is that my daughter does not recognize the fight I've put up for 10 yrs, continuing to work, direct an entire department, commute close to 3 hours a day, maintain a household and not let the IC stop me.(often in great pain).

I can't do it any more. I just can't. I am not as young and my body is not as resilient. I won't defend myself any more. If someone is not educated or compassionate enough to know the debilitating effects of this disease, there is nothing I can do. I try to raise awareness where I can, which is part of the reason I'm including this very painful part of my life in this Journal. I thought about deleting it. I don't want anyone to interpret this as a cry for pity. It's not. It's an attempt to reach out and raise awareness to others who may know someone with IC...and maybe, just maybe, you will remember reading this, and open your heart a little wider to someone who is hurting inside.

I hate feeling sorry for myself. I have been nothing less than committed to getting well. I don't resort to pain meds, and believe that if I eat healthy and take care of myself, my immune system will bounce back. But sometimes, the pain and sadness wrap around me like a dark, heavy veil and I wonder what the hell else the Universe wants from me...

I am grateful for having the most incredible man in my life. I don't know how I could get through this without him!!!!

I apologize for really going off on a negative track. But if I want this journal to truly represent my journey...this is part of it. A stinky part...but it is what it is...

February 12, 2010
I am disappointed in myself. Last night we were invited to a friends' house for dinner to celebrate his birthday. I was excited to get out and probably didn't pace myself very well in advance. The birthday "boy's" wife requested garlic hummus and of course, I have to make it from scratch, so I whipped up some roasted red pepper and garlic hummus. W helped by doing the roasting and the house smelled so outrageously good. I soaked and boiled the chickpeas and the hummus came out fabulous. But that was not enough! I decided I needed to make some flax crackers too. I do love to expose SADers to raw snacks when they least expect it.

W went to bed, and I ended up in the kitchen until 2:30 a.m. making the crackers. YES, they came out fantastic, my favorite cracker recipe so far. See "Walnut Hemp Crackers" for the recipe. But at midnight, my back was giving out and I could feel I overextended myself. Not good.

On Thursday, I stayed off of my feet most of the day, but the damage was done. By the time I showered, styled my hair, applied makeup, and dressed, I was exhausted. I could barely keep my eyes open in the car, on the way to their house.

I had a very nice time, but the discomfort makes it so challenging to focus on people and be sociable. I noticed that sitting in an uncomfortable chair really makes things hard for me. The girls were hanging out in the kitchen chatting and preparing, and the kitchen chairs were pretty hard and square. After an hour or two, the muscles in my lower back were pulling on my pelvic floor, and the internal pain was enough to steal a lot of my energy from being able to be present and socialize. I found my mind wandering from the conversation.

Dinner was pasta and sauce and sausage. I thought I could handle it okay. I don't crave pasta any more, but for some reason, the sausage was really calling out to me. I brought my own veggie soup, and of course, my rice "delight", mixed with nama shoyu, but I was hungry, not satisfied. I thought my friend had said there was going to be salad, or a steamed veggie, and I was counting on that, but there was none.

For a moment in time, I lost it. I actually ate not one, but two sausages... and they tasted great, but I was still hungry. This is so odd because when we stick to program at home and eat raw or vegan, I never feel hungry and if I am not satisfied, we have a nice salad and all is well.

But I was hungry, and it was time for birthday cake. W had 2 small pieces....well, I just couldn't stand seeing chocolate anything in front of me, and I had a good few bites of his chocolate cake and icing.

I don't like feeling guilty. I have been soooo good on my program, sticking to it religiously. It's easy when I'm home, but if I am not prepared and don't have enough options, I find myself "cheating." So now I need to get over it. I didn't die. I am sure that little bit didn't totally undo all of the work I have done. I am just disappointed in myself that a) I was not prepared with enough food and b) that I let W eating something prompt me to eat it too.

I still have work to do, but all in all, I think I did pretty well.I am more disappointed in how drained and uncomfortable I was. I am finding that my comfort hinges a lot on where I am sitting and how relaxed I am. In a hard chair, my pelvic floor does not relax and I think I get spasms. I don't like that I feel sooo tired when we socialize. Once again, I am happy to be home today, hanging out in my sweats. What a hermit I am becoming!

It has been a rough ride this past year. I was laid off over a year ago. I was Director of Customer Support. It was very stressful and I believe the stress and constant commuting contributed to the return of my IC, which slowly but surely has crept back into my life. It had been noticeable for over a year, but over the past 6 mos it has gotten progressively worse. At this point, I don't even venture out of the house too much. It hurts to walk and I am simply uncomfortable going places. Try to imagine the sensation of a football in your abdomen, well, not just any football, a football that looks and feels more like a porcupine! Seriously. Interstitial Cystitis is an awful disease and I will do whatever I need to do in order to eliminate it from my life.

My big outing is to Whole Foods once a week. Today is the day for that. I am having a little problem motivating myself having only slept 2 hours last night. Yep, I am an insomniac and since I started my "program" it has not gone away....yet. I am sleeping around 5-7 hours about every other night and am grateful for that! But today, I am just plain tired. This does not help with healing or weight loss. My body really needs more rest.

I am feeling better than I was 2 months ago, before I started the "program." But I have a long way to go before I can feel "normal" again. I had tried exercising but when my chiropractor started spinal decompression on me, the IC flared up so bad that I could barely stand for 3-4 days after each session. For now, I have to stop that procedure and focus on my diet, supplementation, and getting my body to function as it needs to in order to retain good health.

Losing weight has always been a problem for me, and it is not because I overeat, or even eat incorrectly. I believe my adrenals are exhausted and my body is constantly in the "fight or flight" response mode. This causes the cortisol levels to be elevated, which causes production of insulin...and then we get belly fat! The problem is your body does not know the difference between physical stress or emotional stress. If I tried to exercise, my body would interpret that as stress, and produce more.....W finally believed it when he saw me go on a program for 6 sugar, grains, fats...I was exercising 5 days a week - and at the end of 6 weeks, I gained 2 pounds! And that has been this way for years!

Now I am on the "program" and I have taken off about 10 pounds in 2 months which was great, but am getting frustrated because I keep fluctuating between 8-10 pounds and cannot drop below that level. I need to realistically lose at least 50 pounds more! I am trying to not lose hope and keep the focus on my getting healthy. But now that I am feeling somewhat better, I need to try exercising again, even if it is very very mild to start. I should do a few minutes on the rebounder(which is great for clearing out the lymphatic system and helping with detoxing) and I also have an elliptical machine and free weights. So-ooooo, I need to make a commitment for the New Year to begin an exercise program again and see I can jump start my body into further weight loss! Wish me luck!

I am gathering recipes for New Year's Eve. We have a couple of friends coming by and I need to come up with a few raw appetizers and desserts. Once I try them, I'll take some photos and let you know how they turned out.

I am looking forward to a wonderful turn around this year, filled with many blessings. May peace, prosperity, joy and good health surround you all!! Many Blessings.

Here is a picture of my little angel! Being a Grandmother is about the most amazing thing I could ever imagine!

This picture still brings tears to my eyes. Seeing this little angel running so freely on the beach, her little footprints in the sand and just quietly observing as she literally leaves her little mark on the world. Who will she become? What will she do? What impact will she have on those in her life? It is so amazing to see how fast she is growing.

12/11 3.5 yrs old

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