Meeting My Spoonie Bestie In-Person for the First Time

I’ve always hated the phrases “online friends” and “friends in real life.” Sure, back when the internet was first getting popular for social uses, all your internet friends were “friends in real life,” and it felt necessary to differentiate between people you enjoyed talking to (usually anonymously) in chat rooms or on forums versus people you knew and socialized with offline. But, that’s not how the internet works anymore.

I know several people who met their now-spouses (or serious significant others) online, and many of us with disabilities find that a majority of our social lives take place online. Via this blog and my associated Instagram account, I’ve met some amazing people and have greatly expanded my world. My sister went on a foreign exchange program while doing her bachelor’s degree and made friends from all over the world, and I used to be jealous of that. However, I’ve realized that I have close friendships with people from all over the world, as well. Granted, a majority of the people I’m close to are from the USA, but I have good friends in other countries even though chatting with them is more difficult due to time zones. When I think about it, my sister is probably the only person I know “in real life” that has friends that are more spread out than I do.

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The Appointment from Hell

I am not using names for legal protection. While I want to scream this doctor’s name from the rooftops and tell everyone in the world to never ever go see this jerk, I know that if he finds it I could get sued for libel. Instead, I am writing this to educate and warn people that doctors like this exist, and as a form of therapy for myself to help me process this awful appointment.

I am also not using names in case this does end up in a legal case. During legal investigations and such, you’re not allowed to talk about the case, so I don’t want to cause any conflicts by having it published. Well, obviously my husband’s name appears in there because he was in the appointment and he is already not anonymous on this blog. Continue reading

A Look Back at 2017 – part 2

2017 was an extremely busy year for both of us (Dan and me). I was writing my “Look Back” post and it got extremely long, so I needed to divide the year in half! You can find the first half of the year here: “Look Back part 1.” This post covers July through December 2017!


July

Lizz

I followed up with my cardiologist, but had to see the nurse practitioner because his schedule was too full. I don’t like seeing NP’s for cardio because they can’t ever do anything for me. At least she talked to my doctor and then called me with how to change my medications.

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A Look Back at 2017 – part 1

2017 has been a chaotic year for both Dan and me. Honestly, it’s hard for me to even wrap my head around because it flashed past so quickly – I feel like I haven’t gotten to take a break since last Christmas!

I wanted to write up a little summary of our year, both so you can know what we have been up to, and so that I can have something to look back on myself. Since this is a summary, I will include links back to any relevant posts so you can read more detail. All links are either to my personal blog posts or Instagram posts.


January

Lizz

My pelvis and back started causing a lot of problems in October 2016 (read more here and here). By January, I was in excruciating pain 24/7 and having to spend most of my time on the couch. Thankfully, I saw a new doctor (a physiatrist) and at the end of January, I got a cortisone injection into my right SI joint.

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Overexertion in Chronic Illness

I’m sure you’ve experienced overexertion at some point, and it was unpleasant. It’s possible even without a chronic illness. Children are particularly susceptible because they don’t know how to pace themselves and that’s why you will see them passed out cold in random places and positions because there bodies are like “nope, we’re stopping now!”

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LEAP Diet: Changes to Phase 1

When we first setup phases ½ and 1 of my LEAP diet (see this post), I was told to email Kara (dietitian) near the end of my ½ phase so she would know my progress. Unfortunately, with everything that has been going on with my health, the email was really long and not very happy. Because of everything going on, and my mental health struggles during this time, Kara decided that instead of doing the even stricter phase 1, we would liberalize my diet. Now, I can have all of my green foods and chemicals. I have to stick to tested ingredients only (with one exception), and I did go through the list and make sure I removed foods that were naturally high in the yellow and red chemicals.

The one exception to “tested ingredients only” is that Kara has allowed me to have Trader Joe’s Rice Milk. The ingredients list is exceptionally short and boring; it’s mostly just rice, salt, water, and some added vitamins. I already knew I loved their rice milk, and I was struggling without having a milk. (My homemade rice milk was disgusting.)

Some general rules for my “liberalized” diet:

  • I cannot have any frozen or dried fruits or vegetables. Really, I can’t have processed fruits or vegetables because they usually contain sodium metabisulfite, which is my only red chemical.
  • To avoid sulfites in general, I need to avoid: sulfur dioxide, potassium bisulfite and metabisulfite, sodium bisulfite and sulfite and metabisulfite.
  • To avoid polysorbate 80, I need to avoid: sorbitan monooleate, polysorbate 60, sorbitol, and sorbitan derivatives
  • FD&C Red #3 is another additive I need to avoid, and it also goes by the name erythrosine.
  • All of my dairy products have to be grass-fed. Cheddar cheese must be aged less than 6 months to avoid high tyramine.
  • If I decide to have oranges, they must be pulp free. That pretty much means I need 100% pulp free orange juice only, or I can use orange essential oil!
  • I will still be limiting soy products, as there is research that shows soy may not actually be good for you after all. (It can mess with hormones, and my hormones don’t need any more messing with!)
  • I should try to limit parsley and dill because parsley is high in nitrate and dill is “medium” in nitrate.
  • I can have sea salt, cane sugar, and baking soda.


What Can I Eat?

Proteins
  • Chicken
  • Codfish
  • Crab (not a big fan)
  • Pork (not a big fan)
  • Beef
  • Eggs
  • Pinto Beans
  • Sole (unsure if I’ve ever had it)
  • Catfish (unsure if I’ve ever had it)
  • Tilapia (unsure if I’ve ever had it)
  • Clam (only like in N.E. clam chowder)
  • Garbanzo Beans
  • Turkey
  • Tuna
  • Scallop (never had)
  • Salmon
  • Lamb (yuck!)
Starches
  • Sweet Potato
  • Kamut (unsure if ever had)
  • Quinoa
  • Rice
  • White Potato
  • Amaranth (grain) (unsure if ever had)
  • Buckwheat
  • Oat
  • Tapioca
  • Spelt
Vegetables
  • Broccoli
  • String Beans (yuck!)
  • Cucumber
  • Peas (only eat in things, never alone)
  • Zucchini (not a huge fan but it’s in my chicken broth)
  • Onion
  • Yellow Squash (yuck)
  • Mushrooms
  • Green Pepper
  • Cauliflower
Fruits
  • Pineapple
  • Honeydew Melon
  • Watermelon
  • Peach
  • Plum
  • Cherry
  • Blueberry
  • Cranberry
  • Orange (no pulp)
  • Strawberries
  • Apple
  • Apricot
  • Pear
  • Mango (no idea how to prepare)
  • Papaya (no idea how to prepare)
Dairy/Miscellaneous
  • Cocoa
  • Cheddar Cheese (aged less than 6 months)
  • Goat’s Milk (not a big fan)
  • Yogurt
  • Cottage Cheese (yuck! hate the texture)
  • American Cheese
  • Whey
Nuts/Seeds/Oils
  • Sesame
  • Olive
  • Sunflower Seed
  • Soybean
Flavor Enhancers
  • Vanilla
  • Cinnamon
  • Oregano
  • Lemon
  • Cane Sugar
  • Cayenne Pepper (don’t ever cook with this)
  • Carob
  • Basil
  • Honey (need to limit due to pollen issues)
  • Mustard Seed (not a huge fan)
  • Leek
  • Black Pepper
  • Cumin
  • Garlic
  • Mint
  • Maple
  • Coconut (need to not go too overboard because it’s very close to yellow)

Since my diet has been opened up a bit more, I won’t be doing the weekly roundups anymore. Instead, I’ll just post recipes (including those you have requested) that have worked out well for me. These won’t be on a regular schedule, because it depends on when things work out and when I can get pictures of them so I can write the posts.

Feel free to take a look back through my other LEAP diet posts and request any recipes you would like to see! I have a request for the tortillas (which I will probably get posted this week) and one for the sweet potato risotto (which will probably be posted sometime near the end of this week or early next week). Here are all my past LEAP diet posts:

If you have any good recipes using these things, please let me know below!

LEAP Results & My Program

After the low FODMAP diet didn’t work for me, my dietitian and I decided to move forward with the LEAP program. I explained the LEAP protocol in more detail in this post, but I’ll give another brief summary here. LEAP is technically the eating plan that is developed based on the food sensitivities that are found from the mediator release testing (MRT) conducted. Mediators are chemicals that are released by white blood cells – such as histamine, prostaglandins, and cytokines – in an immune system response. Mediators can cause a range of symptoms, including inflammation and pain. The LEAP 150 panel tests your blood against 150 different foods and chemicals, and checks for mediator release. Results are ranked numerically, and these numbers are converted into a great visual with different length, color-coded bars for each item tested. Bars are either green (non-reactive), yellow (reactive), or red (highly reactive). The yellow and red items, as stated in the booklet I was given with my results, are best to avoid completely. Yellow items can sometimes be dose dependent, so late in the program you can sometimes attempt to reintroduce them. However, that is for wayyyyy down the road, so right now we won’t talk about that.

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Being “Normal” Sick While Chronically Ill

First of all, it’s extremely difficult to determine if you’re actually sick, because colds, the flu, and infections tend to mimic the symptoms of the chronic illnesses… differentiating between a cold and a flare can be extremely difficult. (I go more in depth about this problem here.)

cold-156666_1280I realized I was sick this time because I suddenly felt like I was swimming through cement. I also was having a lot more gastrointestinal distress than comes from eating the wrong thing, and it stuck around for a few days. My digestive system decided to switch from my normal IBS-C to suddenly having IBS-D type behavior. (It’s calmed down a little now, but I’m still having some problems.) Then, I started getting off and on fevers in the evening. My fever spiked to 100° F (my normal is 97.6° instead of the average 98.6°) before I decided I should really take some Tylenol for it.

Then, after a week of most definitely being sick, and still having to carry on with life… it got worse! I woke up with a start because both nostrils had swollen shut and I could barely breathe. Then, when I sat up (far faster than I should have – thanks dysautonomia) to be able to breathe better, I realized it felt like I’d been hit in the face with a sledgehammer. Every time I would bend over during the day, I got severe pre-syncope symptoms. Same would happen while I was standing/walking. So I called my doctor and managed to get an appointment for the next day. Continue reading

Goodbye, Topamax

After a few weeks of dealing with increasing side effects, I am now saying goodbye to my Topamax. I didn’t actually realize how many side effects I was truly dealing with until I had my neurology appointment yesterday, and the appointment ended up freaking me out a little bit. Now that I know how many side effects I was actually experiencing, I really wish I had gone in quite a bit earlier, but at least I finally got in. However, I’m terrified about coming off the Topamax at all, because I’m scared my migraines will come back with the debilitating daily frequency I was experiencing before I got put on it.

Side Effects

So what side effect made me finally call my neurologist? Uncontrollable muscle twitching in my eyelid that was so intense it was blurring my vision:

 

We’ve pretty much all had muscle twitches in our eyelids, right? Usually, it only happens to me when I’m tired. Sometimes, it’ll happen just because, but it doesn’t happen very often. Well, I took this video because it started happening A LOT! This was the third day it had happened in a row. This was about the sixth time in those three days, and this was after my shower… where it had been happening for most of my shower. Thankfully, it stopped very shortly after I got dressed. But I went straight to the pharmacist and had them do a medication review. The only medication that caused muscle twitching was Topamax, and it also had a lot of eye problem side effects (scarily enough). The next day it twitched for about three or four hours straight, then it also twitched for most of the evening. Thankfully, the last two or three days I’ve had a break from the twitching (it’s actually gotten painful now).

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Experimenting With Treatment

Right now, we’re (my GI and I) experimenting with treatment for small intestine bacterial overgrowth – aka SIBO. I am going to be taking Xifaxan for two weeks, and hopefully the delayed gastric emptying will improve. We’re also going the motility improve.

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He decided to just do the treatment instead of testing first because he didn’t like how many I’ve been thru already, and apparently the SIBO test isn’t very accurate. Xifaxan isn’t supposed to be absorbed into your system much at all, so there really isn’t supposed to be too many side effects, so I decided to just for it. I figure my daily issues are so miserable, I’d rather just try it and hope it’ll help.

So far, I haven’t been too happy: gassy and lots of bathroom trips. My fatigue is also a little wacky, but my period is also poorly timed again. However, my stomach had been marginally better. Hopefully that means it’s been helping.