Thursday, June 6, 2019

Difficulty Swallowing

For the last several months, I've been dealing with difficulty swallowing:

  • both liquids and solid food. (I lost about 8 lbs but most of it was belly fat I am happy doing without anyway.)
  • the additional work and energy required to liquefy and combine foods to get enough nutrition in me... and all the work and energy required to clean up after I make a mess.
  • the frustration I feel when I spill stuff on my counters, floors, and clothes.
  • the discouragement I feel because, despite everything I've learned, I am still sick, in pain, and dealing with bouts of fatigue.
  • having the knowledge that (trauma recovery) therapies exist which could help me feel better but I don't have access to (at least yet).
  • the increase of throbbing neuralgia pain on the top my right foot toward the toes from spinal nerve compression. (It feels like I dropped something heavy on it in addition to the cramping.)
  • that the only way I can get pain relief right now is to sleep, listen to guided meditations, and be distracted by having meaningful conversations with people. (I suppose I could feel grateful this pain distracts me from discomfort in the rest of my body.)
  • that PCPs (managers of your healthcare) are limited in what they can do, therefore, they can only, hopefully, determine what you need and refer you out to specialists... who order procedures... as they don't have the means to see inside your body without them... and the procedures, like the EGD (Esophagogastroduodenoscopy) I just had felt more like torture. (They put the needle into my very sensitive hand. Then the anesthesiologist said when they turned on the anesthesia, I'd feel a little sting. It felt like they smacked my whole hand with a sledgehammer. I groaned in pain until it took effect, and I was out. And my throat was sore before the scopy but after was about five times sorer.)
  • the circumstantial changes such as meeting new doctors, specialists, and their staff, and repeating my symptoms (stories) over and over when all I want to do is focus on more positive thoughts.
  • aggravation when I see clerical errors in my medical records. (The first one, was when dysphasia--difficulty speaking--was written instead of dysphagia--difficulty swallowing. The 2nd one was the letter I received denying more than four P.T.  visits which had the diagnosis of multiple sclerosis on it instead of spondylolisthesis. After several phone calls, I found out it was a clerical error by the insurance company employee who typed up the letter. Once this was corrected, I was approved for the additional P.T.)
  • all the wasted time and energy waiting--for the referred specialists to call me, being on hold when I call to talk to insurance or doctor's office, appointments, in waiting rooms, in exam rooms, for transportation. (Yes, I avoided going to doctors as long as I could. I suppose I must be grateful that my health challenges are not nearly as severe as some of the other people I know... some of who do not have insurance... or their insurance was canceled due to clerical errors.)
  • the additional expenses of co-pays such as $250 to have an EGD in addition to $35 each time I see a specialist. (I do realize this is not much compared to what others will owe because they don't have satisfactory insurance. And I did manage to adopt the attitude that these are only numbers... and in my philanthropist spirit, willingly donate to their organizations.) 
  • that I must take a break from more enjoyable activities I had been previously participating in. (I suppose I could be grateful for additional experiences, even unwanted ones, and all the people I meet along the way. I do take advantage of learning as much as I can from new people I meet and enjoy offering them information they can use, too.)


(Note: I got the new Medicare Advantage Plan effective March 1, didn't receive my ID card until the end of March, couldn't get an appointment with the new PCP at the new clinic until April 23. The referral process took forever. On May 28, I met my new Gastroenterologist. And yesterday, I had an EGD.)

Out of the above list, I will elaborate on the progression of getting enough nutrition. At first, I was eating a little of this and a little of that often throughout the day... like 1/2 sweet potato warm with coconut oil or cold, some steamed veggies with butter, 1/2 - a whole hard-boiled egg, a small piece of salmon cooked in water with added dehydrated veggies and some butter, some mushrooms with Basil Pesto, 1/2 apple and a small piece of cheese, etc. The food went down way too slow, and I felt full before I could get much down. 

I had also been swallowing a variety of nutritional supplements recommended by the ACN/HHP I'd been going to (Bri) but finally gave up on this and told her I had to have more nutrition in something that could be liquified. 

On May 9, I purchased Chiropractor's Blend PH50-GF Protein Greens--Gluten and Dairy Free. The instructions are to use a whole (tiny) scoop. I could open up the two supplements which came in capsules to add to this (l-Lysine and Cal-Mag-D). At first, I tried a variety of ways to blend this powder: it worked OK in applesauce, not so OK with plain water, and the Hamilton Beach little blender wouldn't process additional foods I wanted to add. I also experienced some stomach and intentional cramps... and wondered if there was something in it I had a sensitivity to just like other powders I had tried in the past.

On May 16, I was blessed with an advance barter of a Vitamix Space Saver unit. You put a washer on the base and screw the bowl on. Before realizing my error, I put all kinds of ingredients into the bowl (some pistachio nuts, a Wholly Avocado packet, an entire apple)... and watched it leak out the bottom. I panicked and made a bigger mess as I tried to rescue the precious content. In trying to turn the base tighter with my right hand, spasms shot up my arm. Even using a rubber gripper didn't help. And you can't just wash the thing out... you have to remove the base. (BTW, the instructions tell you NOT to make it too tight as it will leak.) 

As suggested by Bri's receptionist, I tried wrapping it in a towel and putting it between my knees so I could use both hands to turn it. Successful but often left contents on my pants anyway even though I had a towel on it... which I then had to wash out immediately. After a few days of struggling with it, I eventually figured out how to get it tight enough so it wouldn't leak... but couldn't get the base back off. I realized I could take it down to the office and ask someone to unscrew the base for me. I also got smarter and checked for leaking with just water before adding the rest of the ingredients.

Within a few more days, when I placed the unit with the base still on into the sink, I watched as it slipped into the drain hole... almost the exact same size... and wondered if I put a piece of green scrubby into the drain hole if the base would stay put. It did!!! I could now successfully tighten it and remove it. After I poked a finger with the tip of the blade the first try of removing the base out of the drain, I got smart enough to only unscrew it enough to get unstuck and lift the entire unit out to do the rest.

I thought maybe the issue was defective washers, contacted the company, and they shipped out newly improved ones. Same result. I continue to use the drain hole in the sink and green scrubby for assistance.

On May 21, at my next visit, I told Bri my concern about the cramping. She determined an entire scoop at once was too much for me and an entire apple was overkill on top of the ingredients in the powder. (I'm such a lightweight!) My new instructions were to only take 1/2 scoop at a time... up to four times a day... and only add 1/4 of an apple if I use apple. In the meantime, I was thinking $45.90 a canister, 30 scoops per canister, maybe I can get by with only 1/2 to 1 scoop a day. It was so much work to make a smoothie and clean up after it, I only wanted to deal with it once in a day.

Then came yesterday when I had a conversation with my sister who lives out in California. She lovingly reprimanded me for further limiting the amount of nutrition I was giving my body... recommending 3-4 smoothies a day... adding foods like sweet potato vs. eating just a little on its own... making each smoothie a complete meal to include protein and healthy fats... healthy fats in addition to the fats in the avocado and nuts. Only 6 packets of avocado come in a packet and I fussed about it being $5 a box. 

She replied STOP FUSSING AND WORRYING ABOUT COST AND GET THE NUTRITION IN YOU! STOP PLAYING THE VICTIM! Ouch! Tough love. 

So far, I've only come up with two recipes for smoothies I like which I am listing in order of how you add them to the container. I am in the process of figuring out what other variations I can try.

1) Cold water, 1/4 cup raw pistachios, 1/2 scoop powder, contents of capsules, 1 avocado packet, a small amount of frozen fruit (peaches or melon), a teaspoon of coconut oil.

2) Cold water, 1/4 cup almonds (when I don't have almond butter), 1/2 scoop powder, contents of capsule if I hadn't already done this earlier in the day, 1/2 a cooked sweet potato, a small amount of frozen fruit.

If you're interested in seeing the ingredients of this powder, go to: 


If you're interested in getting your own Vitamix Space Saver S30, Amazon has a good price:

https://www.amazon.com/Vitamix-063373-S50-Blender-Black/dp/B00V9ZOWI6/

And if you have other suggestions for smoothies you have tried (gluten, grain, and dairy free), please let me know! I steer away from most fresh produce as I can't eat enough of it before it goes bad. 

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