Tag: LIFE IN CHANGE

RECOVERY IN PROGRESS UPDATE DAY 180

It’s hard to believe we are at the 6 month mark. Sometimes it feels like it’s been 10 years already. Then when I try to eat something I’m not yet ready for I realize, it’s just been a very short time in the realm of relearning how to eat.

PROGRESS REPORT

So, for some weird AND unknown reason many food smells that were once welcoming AND comforting now turn my stomach. The doctor says this is fairly normal, but CANNOT answer why it is “normal”. Some of the once loved foods that I can no longer stand to be around are:

  • hard boil eggs
  • pancakes
  • cabbage
  • sausage

I also cannot eat much bread, potatoes or rices because they take up too much space in my egg sized portion of stomach with virtually no nutrient value.

‘REGULAR’ WILL BE A LONG TERM AND ONGOING LEARNING CURVE for the REST of my life

I have SLE (Systemic Lupus), Fibromyalgia and recently ended up with a non-weight loss stomach bypass that changed my life beyond belief.  Just 6 months ago you would NOT have been able to convince me to EVER give up ALL sugar – (nothing like waking up from a routine surgery and learning it was anything but routine and you can never again have certain things), but I have to say no sugar is NOT the worst thing ever. I ALSO DO NOT do ANY sugar substitutes or preservatives because of the SLE and Fibro. So, while my diet does become a bit limited, it is possible to cope.  The thing I REALLY miss is coffee, but am making it work with green tea which is ultimately so much more healthy.

I had needed to lose 15 pounds or so as we all do at this stage in life, but now at the 50 pound mark lost, the doctor’s concern is that I lose no more and try to maintain where I am – he actually felt that way at the 25-30 pound mark.  Because there is no “real” stomach or holding vessel for food, the body does not absorb much at all.  For that reason I have certain vitamins and supplements that will be 5 times a day for the rest of my life. I also have to be picky on what I eat as many foods still do not agree with me and I can never eat sugar again.  Anything with high fat is also an issue so it really limits my choices every day. The biggest lifetime issue will be the amount (or lack there of) of food I can eat at any given time.  My stomach is now the size of an egg.  My stomach does not and will not stretch. It also does not absorb much in the way of nutrients.  My stomach will NOT grow or change in any way.  Eating is now and always will be in the future something of a challenge.

One of the biggest shocks was the need for ALL new clothes, I went from a size 8-10 down to a 2 so far. I have had to buy ALL new underwear, bras, pants, dresses and even shoes! Yes, I said shoes. I lost an entire shoe size – I didn’t even know that was possible.  This is just one of the piles of shoes I made when trying to find something to fit on Easter morning.

DAY 7 of a RECOVERY IN PROGRESS

You know the old Yiddish proverb, Man Plans, God Laughs? If not, you should learn it just to keep yourself sane.

So, as many of you know I have been suffering from some health issues the past few years, especially this last year. To give you a quick background when I was 24 I was diagnosed with Systemic Lupus and not doing well. Several months into the disease I went to my rhuematlogist, held out my hand with 32 pills in it and said “I can’t live this way”. She agreed and we moved into treating the disease and it side affects like Fibromyalgia with BETTER diet.  I immediately gave up ALL steroid medications, preservatives, splendas, aspartames, diet food of any kind, non GMO food, canned “food”, boxed “food”, fast food as a whole and started perimeter shopping and scratch cooking with “REAL” foods. My life improved almost immediately.

Fast forward many years to 2011 and my oncologist claiming this change in food prep and eating for all those years saved my life when she was able to lift out a twice torsioned (wrapped around the ovary 2 times) volleyball sized ovarian tumor from my body intact and I have been NED (no evidence of disease) for almost 7 years since.  She decided it was because the cancer had nothing else to feed on in my body except itself. I knew I was extremely blessed when after 6 more months of testing everything and everywhere to make sure it was the only tumor, that they found none. I follow up regularly with blood work and testing.

Fast forward another year and I’m having problems with the hiatal hernia that my cancer doctor found, but left alone. Enter a new gastroenterologist who was able to fix the hiatal hernia and shredded esophogaus with a Nissen Fundoplication (2012). This didn’t alter what I ate except in the beginning 2 months, but did alter how much and how often I ate.  I also gave up 90% of bread – just filled me up too fast.

Fast forward 9 months (2013) and the mesh from the Nissen Fundoplication failed requiring a revision surgery and another period of liquid food adjustment.

Fast forward to 2016 and the E.Coli bacterial infection that landed me in the hospital with a concussion because I lost consciousness and fell after becoming violently ill.  For the next 13 months I was tested by neurology and cardiology for my symptoms before they finally handed me off to gastroenterology which had a HUGE wait time so my wonderful primary doctor got tired of waiting and began doing logical testing on her own. She was the one who founda new hiatal hernia (again) from mesh failure and referred me to the surgeon.  His testing was further delayed another 6 weeks past their normal backlog by Hurricane Harvey.

I love my surgeon and his immediate staff as well as my hospital nurses Ericah and Lexi.  Other than that the hospital will be getting a not so favorable review from me.  The recovery nurse should NEVER have contact with human beings and the respiratory therapist is negligent with he lack of follow through and the nurse’s aides need to be trained in patient care and helping.

We went into last Wednesday believing he was going to be able to fix the fix on the revision surgery.  Unfortunately this is where the Yiddish proverb enters.  I had planned food and EVERYTHING on the fix of the fix, but he was unable to correct the issue and had to make a drastic decision to do a bypass. This is a HUGE DRASTIC LIFE CHANGE for anybody, but for me there is very little information written on it because it isn’t for someone who isn’t doing it for weight loss.  I mean EVERYTHING written about the subject is for people who need to lose significant amounts of weight. The diet is strict because of the bypass in general and I can live with that, but the recovery time has now doubled!

And once recovery time is over the way you eat and how often, etc.. is a lifetime change! I can live with the long term lifetime diet and special vitamins as it is high protein, low fat and REALLY healthy which is right up my alley anyway.

So here we are on day 6 of 90-120 days of nothingness except keeping a food and medicine journal.  I cannot tell you how much ALL of your thoughts and prayers have meant to me and are seeing seen me through this ordeal. There is 1 good thing. I did want to lose about 15 pounds and now that is already a given. 😀

I’m starting to research getting the highest protein, nutrients and minerals into the most flavorful recipes compactly. So I will obviously be revamping some old recipes and looking into some flavor packed Japanese Ramen and/or Thai recipes where I’m making my own noodles with high protein. At the end of the recovery time above an average day for the rest of my life will be small nibbles of small meals that total 4-8 ounces per meal three times a day with 2-2 to 4 ounce high protein snacks, up to 64 ounces of water or tea and 5 mandatory vitamins.

The bottom line is that I need to learn to live with a NEW normal.  You know what they say, LIFE is 10% what happens and 90% how you’ll deal with it. I’m up for the challenge and looking forward to better health.