Gastroparesis --- food is my enemy

I have been meaning to post and I know that I have been lax in doing so....

I have gastroparesis....

Sometimes I can eat food, sometimes only liquids....

I have to avoid fiber and fat while watching carbs. I am overwhelmed.... The more I read, I know where to start, but I realize it will not be easy. Too much potassium, too much acid and such are also things to avoid. It's really trial and error and I'm thankful to have some solids as there is a fair amount of people with this issue that are tube fed etc or have not had solids in years.... I am learning and it will be ok.... And a lot of people don't understand it, but I am blessed with a great family and friends. 

Namaste and love to all

Intelligent airhead

Restaurant Week Survival Kit Part One

Well it's that time of the year again. Time for restaurant patrons everywhere to venture out into the world of fine foods to sample the offerings of countless DFW restaurants at a very affordable price. As a server it is CRAZY NUTS BUSY! It's an oasis of boom in an otherwise boomless time of year.

But with the crazy busy comes exhaustion, headaches, sleeplessness, soreness and, um,.. uh... chafing. We've all suffered from at least one of these restaurant week ailments and I happen to have just what you need to get through relatively unscathed.

So, without further lead in, I present to you my Restaurant Week Survival Kit

Your feet will be sore. Very sore. You will be in excruciating pain and you are going to go back the next day and do it again. For several weeks. The one part of your body you're going to need to take care of more than anything else is your feet and the way I'm doing it is with PanAway. (You'll hear this a lot.)

A couple of drops mixed with some olive oil and a solid foot massage at the end of a long shift and you'll be ready to do it again the next day.

This same mixture works well for... um.. the other pain that comes with a solid day of working on your feet. Swamp somethingorother. While the foot pain is the most important to upkeep THIS bugger is the most embarrassingly painful. Once again, though, some PanAway, a couple of drops of olive oil and a massage before bedtime and the morning will bring a freshness previously unknown to restaurant week waiters.

One oil in part one to deal with the physical pains of the week, join my later this weekend as I let you in on the few oils in my arsenal that I'm going to use to get me through the stress, sleeplessness and the lack of energy that comes at the end of restaurant week.

Wing pain... Ignoring things doesn't make them go away, unfortunately... 8/

I liken myself to a butterfly a lot... Maybe that's why it's one of my sobriquets... My left arm has been in a lot of pain...  I actually have been diagnosed with fibromyalgia and psoriatic arthritis. Not sure which diagnosis is correct. I haven't been treated for either in years as I decided I didn't want to have them... Lol, it sounds silly I suppose... Poof, can I take them back for a full refund? No? Oh... 8)

I've had my share of other issues, to be sure, but I know I also need to focus on different aspects of my health... More and more of those darned aspects keep showing up though... They need to take a number 8).

My left arm has been really painful lately. It's already affected by my seizures sometimes (less tone and movement)... Now, I'm finding ginger essential oil is really helping it... PanAway has helped as well... But it's just taking the edge off, but I'll take any relief 8) I'm continuing to work on a better recipe, but for now, it's a good start.

One day at a time, but it seems like this may be one of my next focuses... I'm still struggling to get a couple of other tests done (insurance stress mainly) for gastroparesis and for epilepsy, but we'll get there... One step at a time 8) There's a beauty in that... I know that sometimes things happen slower than we want them to, because this way we can focus on each one a little bit more at a time... Also, it's quite overwhelming... I'm picky about medications too, because I don't want to be on more than I need to be...

Life is good and love is better. Love of myself and working on taking care of myself as much as possible is making me feel even better. It doesn't always help a whole lot, but it is important in the longrun.

To all that read my blog, Namaste. May you be blessed, peaceful and healthy.

Checking in

The weight is slowly coming off. I have lost 5 pounds since starting Weight Watchers over a month ago. So much I could do better, but working on good habits...

I went to my first water aerobics class in years yesterday. (Readers: Please, Please note that very careful care must be taken for those with seizure disorders. If you have seizures, please work with your doctors and family to find the best exercise regimin for you. I am only going on days that are reasonably good, as I have partial and complex partials at times. Being in a pool or tub is a risk as you need to make sure someone can get you out, should you go under while having a seizure and you can't react. We take certain precautions and deciding whether that day is a good day to go or not.) I went to Moving really Matters in Allen. It is for those who have arthritis, are in physical therapy, or have any mobility issues at all, or want to go at a slower pace. I have not been exercising much at all with all of these health issues and I know that's a key piece to losing weight. I need to get more active. Without Trina, I wouldn't have much energy at all, but I am able to clean more and exercise. I am excited about that 8). I want to do things, I want to be more active. I don't want life to pass me by 8) And with prayer, sheer will, strength, and the love of those around me and the love to myself, I can do that. The class was very slow, but It's what I need. I'm learning how to use my limbs again, and sometimes that's daily (it doesn't necessarily build, my body might forget everything it learned yesterday, which is why im not a good physical therapy candidate), but this is helping 8) Today, my body is looser, and less pain in certain joints... Yay!!!!

Emotionally, it's one day at a time. Journaling is helping a great deal. I often get frustrated that I can't emotionally heal super fast, but that is life too 8) Slow and steady wins the race. Anxiety and my diseases can be quite the catch 22. Anxiety causes me to feel worse and when I feel worse, I feel more anxiety. Meditation helps and working to be more calm in everything helps a great deal, but I have a ways to go 8) I can do this though 8)

Sleep wise, I slept 5 hours in a row Monday night!!! I usually wake up every hour or two as of late, so I am so very excited by this 8).

I'm really encouraged by life changes I'm making, drinking more water, watching what I eat, using some essential oils (Another message: If you have epilepsy, some oils are contraindicated for us. They can cause convulsing in those predisposed to them. Please start with one at a time, just to make sure that's a good oil for your body 8) --- More on that soon 8)).

Life is good and we're trucking along to the end of the year. I can't believe it's come so quickly!!!

Be well and peace to you all!

Trina

I had mentioned Trina in a previous blog post... I am going weekly to have an Artificial Pancreas Treatment. They give you quite a lot of insulin via IV impulses while feeding you tons of food and drinks to keep the blood sugar up. I'm already seeing some benefits. I have brittle diabetes (meaning uber uncontrolled... Before treatment, my blood sugar might go to 350 just by looking at chocolate cake... and then  with insulin, it drops down to 50 very quickly by most's standards.  Not that bad, but close, nonetheless 8D. My fasting would be around 200... (under 100 is the goal for nondiabetics, 120 is mine...)

After treatment, I still have some high numbers, but they are less crazy... I have more energy (thank Goodness, because we're moving and I got to go out with friends, etc, and 3 weeks ago, all of this would be very difficult. I have other illnesses, as devout readers may know... The interesting thing is erratic blood sugar causes me to have more seizures, so this helps a great deal 8D. Im not having quite as many seizures due to blood sugar.

I'm really excited about Trina. Type 1 diabetes is one of those diseases that is lifelong and they can help you (give you insulin) but this can help reverse and/or prevent complications common to diabetes such as retinopathy and neuropathy... My neuropathy on my right side is so much better!!!! It's really quite exciting 8D. I'm so thankful for any help and I'm so thankful for this breakthrough 8D.

If you would like more information, here is the link. I only know so much, as I am a newbie 8D

http://www.trinahealth.com/

I plan to post as I go with more positive information. I have been 4 times, and I am looking at any small changes as so much progress. My insulin pump is something that has helped to a point, but just not to the point of calming my wacky numbers... Nothing else was really working, watching carbs, different meds, etc... This gives me hope.

Also, this helps those with type 2 as well!!! Most of the others who get treatment there are type 2.

This is FDA approved, so that's a good thing as well. Insurances are a bit slower to get on board, even though I've found quite a few success stories... Length of life is increased and diabetes complications can be reversed in some cases. I recently met someone who couldn't walk without a walker until Trina... I totally understand it's not for everyone, but for those who have tried so much and who are at high risk for many diabetes complications and possible early death (due to higher numbers), it is something to consider 8).

Walk on the wild side

As some who may know me, I have epilepsy. I was diagnosed a year ago. On this journey, I have learned numerous things about epilepsy.... A few of which are...

1. There are soooo many misconceptions!! Many people (and dare I say doctors, even neurologists) don't know all that much about the ins and outs of it. There are over 40 types of epilepsy. It is a spectrum of disorders, and no two are exactly alike. You can be diagnosed with epilepsy at any age.

2. 70 percent of people don't know why they have it. There are ties to PTSD, brain injuries, anesthesia, and such, but some may never know for sure.

3. Seizures can cause anything from speech issues, affecting taste smell and/or hearing,  twitching, random movements, the inability to move, to grand mal seizures.

4. It's a scary situation. And it can be limiting. If you are uncontrolled in seizures, you will be told not to climb ladders, step stools, take a bath on your own, cook unattended, etc. You are also not allowed to drive per most states until you are 3, 6, or 12 months seizure free.

5. Post ictal (after affects) of seizures can last a few minutes to days. You can feel discombobulated, forget many simple pieces of information, including where you currently are, who you are with, etc. You can have Todd's Paresis, which is the paralysis of arms, legs, etc. This can last a short time or long time. Seizures are extremely tiring. It feels like a marathon...

6. Medicines do not always control seizures. In fact, I have seen numbers in the 40 percent range that are uncontrolled (I am very uncontrolled right now). As years go by, doctors start to mention VNS therapy (where an object is implanted to counter act the seizure) or even brain surgery... I speak with so many people at this crossroads on my Epilepsy facebook groups.

7. Seizures can look like a stroke. (many of mine do). My left side is weaker than my right. Sometimes I can't even feel my left side, as it has been numb in some form since last February when this started. Walking can be difficult at times and some are unable to walk eventually.

8.You CAN die from epilepsy. While death in epilepsy doesn't happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is SUDEP or Sudden Unexpected Death in Epilepsy. While there is a lot we still don’t know about SUDEP, experts estimate that one out of every 1000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the US each year occur from these seizure emergencies.
(www.epilepsy.com)

9.  Epilepsy affects over 3 million Americans of all ages – more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined.


(Please know, much of this is what I know... There are many other symptoms and after affects, but I am not as familiar with the ones I don't live with... )

One organization has helped me more than any other in this time. They help with Epilepsy education in schools, art therapy (I have participated in this 8)), camps for children with epilepsy, free and discounted health care for those with epilepsy, etc. That is Epilepsy Foundation of Texas 8)
http://eftx.org/

Yesterday, our family participated in the Epilepsy stroll at the Fort Worth Zoo!!! I really wasn't quite sure what to expect, but what I have now is an encouraged heart, hope and wonderful memories!!!

Everyone met outside of the zoo, registered and got to dance, participate in activities, and get some good information. We got there early (some of the first to register) so we had plenty of time to enjoy everything. The weather was good for most of the day (some terrible storms were in and out and threatening to rain on our parade.. but they didnt 8)). I got so much information about good doctors, possible treatments, tons of literature (Seriously, i find more out daily about epilepsy. The medical community is continuously learning more). We danced and danced... A few things that might make you laugh..... I am not all that current with most music (unless Texas Country or anything on American Idol counts 8)). I found out I cannot do the Wobble Dance, Uptown Funk etc... But teaching Kegan to kind of do the Uptown Funk dance was fun 8). I was standing with Kegan while Dave took a picture for another group. I look around for Avery and he was doing the Macarena on the "dance floor". He had such a blast too. Both the boys got to dance a lot... I made Avery dance to Twist and shout with me... (I wobbled or tried, lol...)  Imagine a bunch of epileptics dance it to "shake it a baby, twist and shout... 8D" but it matches our humor about it too. Gotta laugh and make the best of it 8) So amazingly fun 8) I am so self conscious of my seizures, but I didn't have to be there, not even a little bit 8) I was safe. 8)

The walk wasn't a 5k... It wasn't even a walk all together... This is the most ingenious idea ever... You just get to walk in the zoo with friends and family at your leisure 8). Our family had a wonderful time and we made some awesome memories. My oldest was unable to go at the last minute (he had an orchestra event to attend), but we're glad we had this opportunity, to raise money for a wonderful cause, to teach others about this disease, to learn more, and to care for those in the Epilepsy community.

So, without a doubt, this was a beautiful, wonderful day!!!! I am so thankful and glad my family is supportive 8) There are so many who don't have that 8( and I send prayers, peace, love and light to you if you are in this situation.

A few more words to say in support of this wonderful cause------ Rock N Stroll!!!!!!!!!! (the theme for the walk 8D)

(For those dealing with this disease, or think they might be, I would like to speak to you for a moment... Don't be afraid to find a new doctor. It is important to work well with your doctor and for them to understand you and your communication style. If you are looking for a doctor, eftx does have a list and they can help. Also, if you are uninsured, please consider reaching out to them so that you are under a doctor's care. Just try to see if you qualify) This is a scary disease but you are not alone!!!!

Well if it's good enough for 16th-Century grave robbers...

He knows what I'm talking about

We've done it. We've jumped into the world of essential oils and can report that it's actually working for us. Wonderfully so, in many cases.

While I want to talk all about the different things that using these oils has brought about for our family (I'm always happy to answer questions in private or in the comment section) what I REALLY want to discuss is the legend behind one of the blends we use, Young Living's Thieves Oil.

This is the oil that these guys hang their hats on as being THE blend to use as a first line of defense against those common illnesses that tend to sneak up on us while we're refusing to wear jackets in the middle of chilly weather. We've even heard stories of a weeks worth of diffusing Thieves helping rid homes of black mold.

That's the ultra basic. The LEGEND behind the blend is somewhat creepier. Flash back hundreds of years to the time of the bubonic plague. This was a disease that had outbreaks that wiped out half the population. The doctors at the time wore these creepy bird-looking masks as protection. The reason for this apparent weirdness makes sense once you understand the function. The doctors of the time would put herbs and oils in the beak that would help protect them against the most deadliest of deadlies, with great effectiveness.

Bubonic plague doctors were huge Souixie and the Banshees fans

The legend goes that four thieves from Marseilles had put together an oil concoction that they would use to steal from the corpses of plague victims. They claimed it offered them complete protection from the pestilence. When they were caught red-handed the judges that tried them noted that they had a complete indifference to the contagion. The blend was then referred to as 
"Marseilles Vinegar," or the more popular name, "Four Thieves Vinegar."

Of course, there is a counter legend that the blend was developed by a guy named Richard Forthave. He called it Forthave's, but like many things, with the passing of time the name morphed into "Four Thieves." Is it a more plausible story? Maybe. It's nowhere near as interesting.

That's just the fun stuff. We use it and have noticed a difference in both our personal health and the atmosphere of our home.

Are you there Pancreas? It's me, Holly...

I have lost four poinds in the last week!!!! Yay! I'm so glad we started Weight Watchers 8)

Another super exciting announcement!!! We are trying to get my body to act more like one without diabetes... Trina is a place that has done the artificial pancreas treatment for years and years. I just found out about this via coincidence...( I, like God, do not play with dice and do not believe in coincidences -- V) and this is one of the best things I have ever done healthwise. This treatment can reverse and prevent diabetic side effects in the future (retinopathy, neuropathy, gastroparesis, etc). Medication can help some with diabetes (especially those with type 2) but Type 1 is trickier.

I am so glad to have this opportunity. They are kind there and really take care of their patients...

The issue is I have to track my points... I ate so many gummy bears while there (it's insulin via an iv, so we have to keep my blood sugar high). I really hope this helps me over all though. I have such a good feeling about this treatment 8)

And gummy bears.... yummy 8D

( Additional note -I am finding this is considered experimental. While I am finding people who have had success in their insurance paying for this treatment, it does sometimes require appeals and patience. It's really frustrating when treatments that work or would work for people so much better than other ways are harder to get approved. We prayed and really looked at this and we know this is the path for me. They really work with your situation as well, so that's a good thing. They want people to be helped 8). I have already seen so much good from this and I am very thankful. It is helping us peel the layers of my health issues quite faster... I have been sick for years, and unfortunately, it is taking quite a long time to sort each and every health problem and to deal with the aftermath of uncontrolled illnesses, but we're working on it 8). I am very thankful for this treatment! 8))

Stay on target...

So here we are, one week after deciding to make weight loss a priority. With the help of Weight Watchers I've manager to drop a whole 2 lbs. bringing my number down to 290. It's still a tough number to look at but it's by and far the right direction. 

Even Porkins had a tough time keeping under his WW points

I know after doing this for a while keeping up with my points will be substantially easier, but in the meantime I need little encouragements. I keep hearing Porkins telling me to stay on target when I feel like chicken fingers might be the way to go. I know the Dark Side has cookies but with the help of "The Porkins Mantra" I can resist even the pushiest of Sith Scout Girls. 

I'm weird but stuff like this helps me. We're huge geeks here (though hopefully less huge in time). If I need to connect to the force to hear the dearly departed Jek "Piggy" Porkins tell me to "Stay on target" to get through these first habit forming months then may the force be with me.

Darth Vader sold enough Samoas to win a new bike and a trip to Alderaan

But let me tell you about the Dark Side. MY Dark Side. It doesn't just have cookies. It has Fish and Chips. It has BBQ potato chips. In my dreams Emperor Palpatine has a slow cooker filled with Bratwurst and a fridge filled with ice cream. Can the Jedi beat that with it's quinoa and protein bars? Not really. I love food and more than that I love fatty fried decedent food. Maybe if they wrapped the protein bars in bacon and beer battered them. Weight Watchers allows me to dip into the Dark Side of the menu now and again provided I focus on portion control and am willing to sacrifice the rest of the day. If I'm to stay on target I need to remember that sacrifice is what's needed, but also remember that it doesn't have to be as bad as it may seem.

The sacrifice is worth it. The Jedi way lets me live a longer life with my family. It lets me have plastic light saber duels with Kegan for a period of time longer than a couple of minutes. It helps me work harder. I can sleep better. I can sleep quieter which means my wife can sleep better. Sure that means I have to have baby carrots and hummus instead of cheese curls. Yeah, that means I need to resist the urge to have ice cream by replacing it with an Outshine Bar. And of course it means that a few minutes of the day should be spent working out instead of playing the flavor of the month game on my iPhone. It's worth it. It's worth it ten times over. 

I just need to stay on target. 

A Cadbury Egg is 4 points...

Holly here--- I am a Type 1 Diabetic.... I also have a sweet tooth the size of Manhattan... Logistically, that would be impossible, so I should say I feel like I have a sweet tooth the size of Manhattan...

I'm supposed to log every morsel of edible goodness (or not so good) all the time, due to my Diabetes...

Suffice to say, I'm not good at it. I feel guilty when I've had 3 Cadbury eggs for lunch and don't want to log it, etc etc...

I am pushing 200 pounds, and weight isn't easy to lose anymore... I used to be able to lose weight very easily (super easily... which is one way you can tell you have Diabetes... though it went undetected for way too long...)

I need to do something and I want to lower my A1C. It's important to have my numbers better, because if I don't, the issues associated with Diabetes are much more likely, and I want to lower my risk as much as I can...

It starts with 1 thing, I don't know why... I mean it starts with diet... That pesky mean awful little word... But is it really so bad? I want to be healthier and unfortunately my bad eating habits (i have some good habits, don't get me wrong, I just have "special treats" way too much.

Dave and I started Weight Watchers yesterday and one of the first things I checked was the point value of Cadbury Eggs... I love Cadbury Eggs. They are beautiful, wonderful, delectible morsels that have 40 grams of carbs per egg.... They are four points... Not to bad, you might thing? My daily allotment is 30... But I have a newfound commitment to this. I want to feel better, eat better, do better... I want to be more aware of what I eat. So I have to track what I eat. It's not so bad. I even get smiley faces when I do well. Yay!!!

Big Note here --- Carbohydrates are something diabetics need to be aware of, and the points are not always indicative of the amount of carbohydrates. Weight watchers will not give you medical advice, and they suggest you speak with a doctor about this. I definitely will. I will tell my endocrinologist what program I am using. I hope they won't make me talk to another dietitian, because I usually get scared... That sounds silly but I have been to people who think a piece of birthday cake on your birthday is not a good thing...  I'm human and not perfect. The dietitians are right, I should just do this, with no issues, but having weight watchers at my fingertips (in my phone) is very reassuring and much easier for me. Please be aware, as diabetics, that WW considers an orange or banana for example as no carbs. So if I put in two bananas, I have consumed 60 carbohydrates, but they are no points. I think what's important here is just to be smart about it. It is a very good starting place. I am of the mind that some fruit is fine. Again, picking those that are better in fiber and not eating 5 tangerines for dinner would be better too...

It also helps that Easter is over... When the Cadbury egg screams come out for Halloween, you might be seeing a similar post, but I hope not 8D

Two Hundered and Ninety Two

This weekend we crashed at my folks place and on a whim I decided to weigh myself on their scale. Over the past years I've been hovering at or around 260-270. I've been focusing on eating right and trying to get some exercise in and actually thought that there would be a pleasant surprise.

I was wrong.

292.

292!!!

Two Ninety F'in Two!!

I'm a bad weekend away from the 300 mark.

I weighed myself again later. No difference. 292.

I need to do something different. A number of somethings different. I had used weight watchers before and it worked well. I stopped for one reason or another and it had a reverse effect. It was clear that the first thing I need to do is re-join. And I have (as has my loving wife.)

Which brings me to my next something new. Accountability. I'm going to continue to maintain this blog (which I've been bad at) to track my weight (Sunday weigh-ins) Share what's working. Share what's not. Post recipes that are both healthy and tasty. Be honest about my fat-man issues. Celebrate my milestones. OUR milestones. We've got this. We can do this!

I'm all in. Let's make this work!