Friday, December 12, 2014

First Gluten Free Thanksgiving

I was just sure that everything was going to taste gross and/or weird, lacking all of the usual comforts of our Thanksgiving meal. I am so glad I was wrong. Yes things were a bit different, but overall it was good.

Nothing like going gluten free a couple of weeks before the biggest cooking day of the year. I scoured the internet for recipes to make in place of my usuals. I did not have time to test them out beforehand so I just tweaked things as I went and hoped for the best. I was very appreciative for those that have gone {gluten-free} before me.

My biggest concern was how the rolls would turn out, or if they would even be edible, so I cheated and bought a package of gluten filled frozen dinner rolls for everyone else. I love baking breads and rolls and love nothing more than a warm yeasty chewy dinner roll. That was absolutely not the case with the rolls I made. They worked, but oh so not what I am use to. Wouldn't you know that my favorite food of all time is bread and all of its relatives. Yep, feeling a bit of a pity party coming on. Okay, I am over it already because I NEVER want to feel as horrible as I did on gluten- never ever ever again!

Thanksgiving Dinner Menu

Turkey (of course)- Premium All-Natural Butterball

Mashed potatoes and gravy- cornstarch in gravy
(no changes needed)

Stuffing- I cubed and dried out a loaf of LiveGFree white bread in place of my
usual bag of stuffing mix. Then I proceeded as usual.

Yams- My usual canned yams are gluten free. Top with butter,
brown sugar, marshmallows and bake.

Scalloped Corn- I didn't have a cracker replacement so scratched this.

Corn Pudding Casserole- I have never had this before.
It's not quite scalloped corn, but still yummy.

Green Bean Casserole- I do not love this, so I made the usual gluten filled
kind for everyone else. (cheated)

Roasted rainbow organic carrots

Dinner Rolls- Worked in a pinch, but would not make again.

Pumpkin and Pecan Pies- Argh!! My first attempt at gf pie crust.
What a rude awakening that was. This will be a whole post of its own.
 I made 2 different crusts and pieced/smashed/pressed gently, cursed and complained.
One of them not so good, the other one an okay starting point.

I wish I had all of these crazy awesome recipes to share with you that worked out perfect the first time. Not the case. My stuffing rocked, but that is a bit too simple to need a recipe for- darn. I do have quite a few recipes I will be sharing that I have actually tested and adjusted to my liking.

The great news is that everyone enjoyed the meal and we have some great memories as a family. I will be much more prepared next year and it will definitely not be such a big learning curve. I've got this! Okay, maybe getting it slowly. Any tricks of the trade would be much appreciated :)

Tuesday, December 9, 2014

Goodbye Gluten. . . Hello Life

I finally have the mental capacity to put words on this page and boy does it feel great. I can't even begin to tell you the joy that comes with clarity of thought. It has eluded me far too long.

Who in the world would have thought that tiny little proteins could put a stranglehold on my life? Not me, that's for sure.

Primary Care doctor, Rheumatologist, Neurologist, Neurovascular Surgeon, Geneticist, Neuromuscular  Specialist, Electrophysiologist, Gastroenterologist. . . just a snippet of how the last few years have gone. All of these specialists adding to the mile long list of possible/probable/confirmed diagnoses, after endless tests and procedures.

Yes I was alive, but far from living life. I won't go into all of the details in this post or it would be book length, requiring chapters- oh my! The main take away from this post is that gluten sensitivity/intolerance can and will do far more than keep your tummy miserable. It is not just a gut problem, as I always assumed. Many times there are not even GI symptoms. For me the worst symptoms are neurological and musculoskeletal. That is why I attributed most of my symptoms to my EDS and POTS.

After I had given up on finding the missing link to my neuro issues and my neurologist throwing his hands in the air declaring he was out of ideas, I accepted the fact that this was just how I would be and learn to deal with it. I never wanted to see another doctor again. (yeah right)

Dealing with nausea and abdominal pain became a full time job so I finally decided that it was time to see my doctor once again. I had put it off thinking my GI issues were the least of my concerns. Boy was I wrong.

After countless, or better yet endless, prayers asking God to give me His strength to get through the day I started praying for direction. Please show me what I need to do.  I don't always like His timing, but in hindsight it is always perfect.

EDS and POTS can both cause GI problems, including slow gastric motility, and I just figured it was getting way worse. Before seeing the GI doc I decided I had better get my google on so I could go in with my arsenal of knowledge. Ha!

Gluten ataxia
Brain fog
Muscle cramps/spasticity
peripheral neuropathy
bladder issues
and on
and on


I was looking for causes of symptoms like nausea, gas pains, bloating, constipation, diarrhea, poor appetite and weight loss. Huh? Why in the heck did gluten keep coming up along with these crazy neuro symptoms as well. I asked for direction and it blind sided me out of nowhere. 

I told my husband about all that I had read (only after I prefaced it with "you might think I am a nut job, but hear me out"). He agreed that it was quite hard to believe that gluten could do all of that, yet encouraged me to try giving up gluten and see what happens. It couldn't hurt right?

That was the best decision I have made for my health- EVER! After about a week I started feeling a bit better. As time has went on I am flat out flabbergasted at how great I feel. It has been just over a month of being gluten free and am still continuing to improve. So many things have improved, but just to name a few:

I have energy! I no longer feel like my flu has the flu everyday.
I can think! The neurons are firing again and my synapses went off strike.
I can speak, find the right words, and actually carry on an intelligent conversation most of the time. :)
I can walk normal. The left leg gimp due to spasticity has improved greatly.
Heck, not only can I walk, I can skip with my kids. That actually made me cry- long story.

I have my life back. My husband has his wife back. And my kids have their momma back.

Amazing is all I can say! God is always good and his timing is always perfect!

Wednesday, April 23, 2014

My POTS is like a diamond ~ Forever

I had a follow-up appointment with my electrophysiologist (cardiologist) today to see how my medication adjustment was going and to get my lab results. At my last visit he wanted to check my urine for elevated catecholamines to make sure that I did not have pheochromocytoma or some other carcinoid tumor causing my POTS.

Since my visit with him last month he had received the visit notes from the geneticist which diagnosed my Ehlers Danlos Syndrome. Prior to this I was only diagnosed with joint hypermobility syndrome so I think he was still assuming that my POTS had an unknown cause and wanted to do some further testing.

He walks into the room today and says, "Ehlers Danlos huh." His voice and body language spoke defeat. Not his own, that he couldn't use me as some mystery case lab rat, but rather mine. He had such empathy in his voice as he spoke about how young I am and that there is really nothing more that we can do other than what we are already doing. Unfortunately what we are doing is not really helping much.

The young part is relative. At 41 I am not young per say, but in the grand scheme of life I could have a really long time left to live with this. I try to think of everyday as a new beginning and hope for the best in each one. But, that is a whole lot of possible bedtimes hoping that tomorrow will be a better day and that I can muddle through. A daily dig for the diamond in the rough.

He had doubled my beta blocker last month and that was NOT working out at all. The side effects were more than I was able to deal with. I felt like I had zero blood making it beyond my knees and that is not good if you want your brain to have even a random firing, not to mention the endless chest pain. I did learn during that time that I am better off if I take my dose at night instead of in the mornings. It helps knock a bit of the top off of the early morning symptoms when I am usually having my highest heart rate issues. Small progress is still progress. Any little bit helps.

Since my DNA is not going to be recoded anytime soon and I will continue to produce crappy collagen, I might as well just get use to this craptastic syndrome infested body of mine. I suppose I had better just pull up my big girl "compression stockings" and get on with it.

It is never a real joyful hope-filled experience to have it reconfirmed by yet another specialist that this is ~ Forever. However it is helpful in making me realize that I need accept my limitations and tackle them head on. Okay, tackle might be a little overambitious. See what I mean, limitations are so hard for me. How about slingshot rocks from the couch.

photo via Pinterest
See, all of the crushing pressure (stress) and extreme temperature changes (thermodysregulation) can create beauty after all. I just have to dig deep down to find it.

Diamonds are Forever!

Monday, April 21, 2014

Am I really Chronically Ill?

These two words are really hard for me to comprehend ~ Chronically Ill. I can do the ill part. Get some rest, suck it up for a few days and get on with life. After more than a year of day-in and day-out funk, I am having to come to terms with the fact that this is how life is. Chronic. Chronically messed up. Sounds better than chronically ill.

My stubbornness is a blessing and a curse. What good is it doing me to not give in and just do the best I can when I can. My warped thinking is that no matter what I do, I am going to feel "messed up" anyway. Might as well just pay for it later and get through now. Is this a good idea? Absolutely not and well maybe.

I think the key is finding balance. On one side ~ Letting go of enough stubborn to come to terms with the fact that I am not in control of how my body operates day to day and getting it through my thick skull that I am not going to miraculously wake up cured tomorrow. The other ~ Keeping enough stubborn to make it through each day without letting illness control my emotions.

I am not the curl up in bed and let the world go by kind of person. Before the onslaught of neurological issues set in, I was never idle. I was Full On Go even in spite of my pain. Pain is something I have become so used to after all of these years that I suck it up and push through it. Not real smart, I know, but it works. I deal better with the pain than the side effects of pain meds so it has always been ibuprofen or nothing for me.

I remind myself of the elderly people I use to care for in my nursing days. Ask them if they have pain and almost always the answer was no. I would then probe about their arthritis or any other chronic pain source and they would say oh yeah that hurts but that always does so that doesn't count. If it was not a new acute pain it had become normal and therefore did not count. Wrong! I wish I could take the advice I have given to an endless number of patients in my day. They say nurses make awful patients and I have to agree.

So even after all of these years, I have never allowed myself to take on the label of chronic pain sufferer. I am going to be honest here and say that it feels like I am a weak sissy girl if I were to wear that label. I would never ever think of others that same way, but for me personally I feel like I have some super hero image to live up to (only to myself of course). Trust me, I am no super anything and have never been. It is just some ridiculous sense of failure to my type A personality. It is even more ridiculous that it is part of my defunct collagen producing DNA and absolutely nothing I have control over. Nope I don't have control issues. (insert mega sarcasm)

Pain aside, I am a sweepstakes winner of the daily thrashings of dysautonomia. This is one tough hombre. It is a beating and kicking you while you are down, licking your wounds for a lifetime kind of illness. I wish I would have never met the likes of it. It is so busy kicking my butt in about 65 different ways at one time, I can't even keep track of everything that is happening at one time.

This is the one that is wearing me down. I am not winning this fight- At All! Oh, I may have moments and I mean moments, not hours or days, that I think I may have this thing slightly figured out and then WHAM!  Left hook out of nowhere. It is unrelenting and seemingly has no boundary it won't cross. Chronic!

There are many possible reasons to develop dysautonomia (the POTS variety for me) and many of the cases will resolve on their own after time. I am not one of those cases unfortunately. With my hyper POTS being caused presumably by my EDS it may only get worse. If only I didn't have a double dose of sorry we don't have a cure, but we can maybe kinda somewhat manage your symptoms as they progress. But I do.

So am I really chronically ill? Yep, I finally think so. Why does that seem like the hardest of all of my pills to swallow?

Monday, April 7, 2014

New Addition to the Family

After many years of the kids wanting a puppy to call their own, it has come to be. Luke has crazy allergies and it has been a struggle for him to even be around the guinea pig "Cuggles" for for more than a few minutes without sneezing away.

Every once in a great while I find myself looking in the online classifieds at the puppies for sale. Well on Friday I found what I thought to be the one that Luke might be able to tolerate being around. Everything I read said that they were as hypoallergenic as any dog can be, not to mention wonderful family pets. Double Score!!

He is a Cavachon, which is a mix of a King Charles Cavalier and a Bichon Frise. I had never heard of this breed mix, but evidently they are all the rave in the designer dog world. I am so not designer anything! I am all about what is best for my family though. If you decide to look up cavachons you will find that they can be out of this world expensive. Like anywhere from $800-2500. Hahahahaha! I do not have that kind of money to spend on a pet. We only spent a small fraction of that.

There was no picture of the little fella and he was a couple of hours away. I am not sure what even made me pursue the ad other that a little nudging from above. I had many reservations about it, but I just felt that he was suppose to be with us. He was an older pup (5 months), had no potty training and was far away. Well I told the breeder (and I use that term loosely) I would take him sight unseen if he would meet me half way. He agreed and the rest is history.

This little guy is either going to cure me or kill me. I think it may be the latter of the two. He is so insanely cute and lovable though, it is worth it. Luke has been with him all weekend and he has not bothered his allergies one bit. Not one sneeze (caused by him). Hip Hip Hooray!

"Willy" is exactly what we were waiting for and he has taken to us as if we were meant to be his.

I hope we have many many years of love ahead of us!

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