Kristy's Journal

[Kristy]

.4 mmol today. Total surprise. Was not able to swim yesterday. The pool closed due to covid. Working with my coach on some new hobbies/physical activities I can do inside with lockdown/ freezing cold. All my athletic hobbies are outdoorsy or for winter weather with a different quality of snow. I’m also not very mobile at the moment so I’ll have to work up to more intense workouts.

So I’m asking everyone to reach out to me with recommendations some physical activities/hobbies they enjoy doing indoors! My outdoor loves are: Any water activity, inline skating, hiking, snow shoeing, and cross country skiing. I cannot run (nothing high impact) and I do not enjoy biking. I have lots of indoor exercise equipment but I’m looking for a hobby. Might try horseback riding when things warm up. I also do not want to invest too much money in something I’m not certain I’ll love. Yoga doesn’t count. I’m grasping at straws. Help

[Myhnabird]

Horseback riding has its limitations as an indoor activity

How about body weight exercises? They can be incredibly effective.

[Kristy]

I am doing what body weight exercises I can but I have limited mobility and am building up my strength after injuries. Mostly I want something fun. Body weight is something I have to do but isn’t fun for me unfortunately

[Kristy]

Got a semi-plan set up with my coach for increasing my movement. Having someone to be accountable with/ just another person in my support team will be very helpful. I like dancing so I’ll try some zumba like free stuff with my own music. Then planned 30 minutes of chores daily (not the usual chores, more like deep cleaning organizing @Miramar thanks for that idea), and 30 minutes on the floor (sometimes it can be hard for me to get up and down) playing with the dog monsters.

Seeing two drs today and I’m starting to invent gods to pray to begging for help with my chronic illnesses. Have been pretty decent fasting for 12-18 hours (though I technically break my fast with cream in my coffee in da mornings). However, I’m not sleeping again so hunger obviously goes up- which just extends my eating window. My nutrition is spot on so I’m not too bent out of shape about it. Meditation and some breathing exercises do help with acceptance and let me suffer well but I do have a breaking point.

I’ve really been enjoying ginger juice with ACV in my sparkling mineral water. Very kombutcha like- YUM.

[Miramar]

@Kristy

more like deep cleaning organizing

I just did my under the sink 2 days ago. Realized milk crates fit a certain way. Makes finding things so much easier!

Headed to my storage unit today, and then off to lowes as I need more wood panels for my hermit tank rebuild.

Just installed taller desk legs a day ago so I could more easily roll things under.

Had been toying with making a new kitchen island cart and realized yesterday I really do need to as I got so many new things for fermenting and preservation and no place to store them without dripping back into my living room.

[Kristy]

.6 mmol today! Had a small outpatient procedure yesterday that went well and left me in less pain than going in! Working on changing up meds to sleep again. So many drugs create insulin resistance and mess with hormones. I’ve hit a plateau for the last several months since July(my set weight). Since extended water fasting isn’t an option for me I’m hoping that getting some more movement will help. I’m not in this to look a particular way but do want the weight off to reduce pain in my back and hopefully help mend my metabolism.

I’m wondering if some of the pain i’m experiencing is due to “silent” migraines. I really don’t want to but I’ve asked to be put on a medication that is notorious for it’s side effects. There are no definitive answers in my condition. Sometimes I find myself not socializing because explaining my situation can be so difficult. It’s not something you can see on a scan or cut out so sometimes people have a hard time believing I’m ill. Even Dr’s. I had a shared experience once that touched me so deeply. I was in a walmart parking lot and a man that looked fit and completely able bodied parked in a handicap spot. A person came up to him and starting yelling at him and said they were going to call the cops. The man from the car had to explain to the distraught person that he was an ex marine that had severe PTSD from his time in combat. I hate to say that I was satisfied to see the person put “in their place.”

fasted for 18 hours yesterday. ate spouts with evoo and powdered cheddar, a small avocado with sesames and toasted sesame oil, lots of yummy homemade nut butter and a couple of slices of spicy cheese. When I don’t sleep my digestion gets… unpleasant… so I had to take my don’t throw up pills yesterday. Woke up several times in the night and had some serious tummy grumblings so I had some nut butter. I’m not going to count it as breaking my fast.

Trying out some new meds that insurance will fight me tooth and nail over. Being chronically ill is extremely expensive.

[Kristy]

We do not have to die to enter the Kingdom of Heaven. In fact we have to be fully alive. When we breathe in and out and hug a beautiful tree, we are in Heaven. When we take one conscious breath, aware of our eyes, our heart, our liver, and our non-toothache, we are transported to Paradise right away. Peace is available. We only have to touch it. When we are truly alive, we can see that the tree is part of Heaven, and we are also part of Heaven.

• Thich Nhat Hanh

The pain is real today. Serious migraine. However, my new sleep medication worked! 12 hours wonderful people! Gawd I needed it. Will be going on another migraine med until my next round of botox. The med has horrible side effects but is a major component in weight loss drugs. Not how I want to lose weight but I won’t look a gift horse in it’s mouth.

Wasn’t able to fast for as long yesterday. This is the first christmas I’ve not been home with my family. We have a Star Trek tree and I sobbed this morning when they played them for me. Might make a keto version of stuffing…

[Kristy]

On hour 18 of my fast! .5mmol just amazed that some of you can do extend fasting. I’m already super light headed.

Took my migraine med this morning and it made me all sleepy so I’ll take it at night from now on. Slept again!

Keto stuffing was awesome! Won’t post photos of all the special desserts I got my family for Christmas since I couldn’t make them this year but I did get Santa some special Covid cookies

[Kristy]

Was able to fast 20 hours yesterday- with an even bigger window of no cream in my coffee! .6 mmol today. However, It is partially due to the migraine meds. I can already feel the taste of food altering. I could not take this medication the first time around because, as a chef, obviously taste was kinda my first priority. Now that I’m not working I think it’s a good buffer medication between botox injections every 12 weeks. I’m trying to pinpoint what triggered the extreme migraines (persistent 24 hours everyday all day): upper respiratory infection where I had to take lots of antihistamines, the mini carb week over thanksgiving, and the main one lack of sleep/stress.

Had to take an absurd amount of medication to sleep last night. Not very pleased with that but I know it is transient and as soon as my mood is more balanced I can ween off of some of it again. I’ll have to go on and off of it the rest of my life and that’s ok.

Meditated a lot yesterday. I was kinda blue but sitting with the present moment, the only moment, with my dogs was delightful. That’s not “the point” of meditation. But it’s been a long time since I’ve been able to focus long enough to dedicate my attention on my breath and the current moment.

My new dog sitter and his significant other are coming over today to meet the dogs. His girlfriend (not sure that is the right word because for all intents and purposes they’re “married” ugh labels) is a friend of mine who has had horrible bouts of cancer the last several years. She didn’t have a very good chance of survival and she is extremely young maybe late twenties early thirties. She wants to meet the dogs too. I feel very grateful that it’s him who will be our new dog sitter. He knows about those who are immuno-compromised and will obviously take every precaution to keep his family safe and my health seriously. I’ll take extra precautions before they come visit today and every time he visits to give the house a good cleaning. That will be good for everyone. I’m so glad they trust me enough to come into my home. We haven’t seen ANYONE in ages in ages so I’m thrilled to have the company.

He’s an uber geek too so I have a hunch we’ll become friends and have our two families spend time together. He kept hinting that he wanted to start a D&D campaign. Look like I need to figure out how to be a dungeon master!

[Kristy]

.3 mmol today but was able to fast for 21 hours yesterday! had to eat with some meds before bed and pretty much ate 100% protein (tofu) with some keto bread. Unfortunately new sleep meds are no longer working. Woke up at 2:30 am. grrr… back to the drawing board. There are a couple of meds I could take that my dr will try to push on me after we exhaust (hah like the pun) a couple more options. I REFUSE to take them.

Spent hours cleaning yesterday and the movement felt wonderful. The chemicals and dust kinda got to me by the end but otherwise felt great. The new dog walker came by for about an hour. his SO couldn’t come because she wasn’t feeling good but plans on visiting when she’s feeling a bit better. She’s only 28. OMG she’s part of this experimental cancer treatment at the Mayo clinic that seems to be helping so no more chemo but wow. I want to bow down to her. The new sitter that I will call “M” didn’t expect to be paid. He just wanted to spend time with the dogs. Of course I’m going to pay him, puppy therapy or not. Even if they don’t NEED the money they can use it for special things when they go to the mayo clinic. I know my friend with cancer has a serious coffee habit so she can get something nice at a good coffee shop I know up there!

kinda losing my sense of taste a bit? things just taste a bit off because of the migraine meds. Also experiencing slight aphasia. Did a little bit of a body weight work out today and deep cleaned the microwave and cabinets.

Going to leave early to the hospital early tomorrow to see the ENT and allergist. I have to stay at a hotel overnight but it has a POOL. So i might go swimming if I feel safe. So I’m excited about that. Will do lots of shopping for groceries and stock up on essential TP and the like since I’ll be in a major city. I don’t plan on getting any take out or anything except a giant order of seaweed salad. YUM.

When I see my neurologist in a couple of weeks I’m afraid he’ll make me choose between the botox and the topiramate for my migraines. I hope I don’t have to choose. I’ll go with the botox but with all the stress and triggers it’s just not enough to manage all my symptoms.

We got a lot of snow yesterday and will be getting more tomorrow. A bit nervous about driving my tiny city car on poorly tended roads for several hours.

[Myhnabird]

@Kristy

she’s part of this experimental cancer treatment at the Mayo clinic that seems to be helping so no more chemo

Super interested in this - will be following and hope you update as she goes through it. I always think of McCoy in Star Trek 4 (paraphrasing) “Chemo? How barbaric!”

[Kristy]

@Myhnabird I can’t say I’ll be privy to the details of her treatment but what I got so far is that they are using some form of stem cell/ DNA thinga-magigie (maybe RNA) weekly injection. It’s totally removed 2 of her tumors and insanely shrunk the 3rd one. I bet you can look into it on mayo clinic rochester minnesota’s web site!

All I know is that it was INSANELY hard to get into the treatment but she was able to get in because she had such a slim chance of living with uterine cancer at only 26

[Myhnabird]

Thank you, Kristy. This is way, way cool… I’m very interested in new cancer treatments since, when it comes to chemo, the treatment seems worse than the disease. There’s a lot of cancer in my family and while I believe it’s a metabolic desease rather than genetic, I’m not taking any chances.
Off to check out the Mayo clinic site…

[Kristy]

I don’t have to have sinus surgery again! HURRAY! However, that kinda puts a wrench in the migraine issue. If it wasn’t 100% my sinuses then what the f*** brought back the migraines so severely?

Also, as no surprise I am allergic to everything that grows and will need to resume getting 3-4 allergy shots twice a week… forever… Not literally in perpetuity but a very long time. Since I’ve already had them in the past and they have been extremely effective I’m glad this is an easy, if time consuming, long term solution.

Fasted 18 hours yesterday before I started to get light headed. Had to take Benadryl after the allergy test and allergy meds seem to really increase my appetite. That is an interesting discovery.

Upgraded to Life+. Now that I’m on “dopamax” again I’m going to need push notifications on when to eat and not to eat. Please please please dear neurologist of mine do not make me choose between botox and the medication!

The best event, though, even better than not needing surgery, was that I got to swim in a heated salt water pool twice over my two visits with the dr’s! A bit sore from all the exercise but it’s the good kind. Really starting to move a lot again and that is great for my morale.

[Kristy]

Didn’t sleep again. Trying second new sleep medication in as many weeks. It’s only day two but no dice so far. I’ve also had to titrate up on another medication that helps relax me enough to get me to sleep. Of course one of its side effects is… drum roll… increased appetites this is nothing new. It is it not a surprise. I am watering the seeds of patience but that doesn’t mean I’m not frustrated. Especially since my mood is hightened from lack of sleep.

.8mmol today. had a 5 hour eating window yesterday. Going to try and nap.

Please don’t tell me to stop drinking caffeine. It isn’t a real factor. My biology is so wonky a cup or two of coffee can’t mess up 3 decades of severe neurological problem

[Kristy]

I got this new app called Tody. It’s for managing chores. Since I am no longer able to work and cooped with with the pandemic establishing a schedule is crucial for my (and well everyone’s probably) well being. It lets you set up personalized lists for each area of your house, how you want to clean it, frequency, and lets you customize other things. It’s great for people like me who love lists and checking things off. I did have to shell off 7 bucks for it but if it helps me manage my time in a productive way for my mental health then that’s a bargain!

no sleep= more hunger + inability to keep food in the body! Glad I stocked up on TP!

[Miramar]

I’ve been waking up at absurdly early hours. Right there with you on the sleep thing.

Sounds like an interesting app you found.

Establishing “systems” definitely helps productivity.

[Kristy]

Woah… I had a very… spiritual… interesting… woah experience yesterday. Fasting (I was at about 22 hours and also couldn’t keep food in me for a couple of days)+ extended sleep deprivation + prescribed (For some people not prescribed) psychotropic medications= spiritual experience. My medications are necessary for my daily normal functions so please don’t think I was seeking some sort of psychedelic whatever. My meds are in a wide state of flux/titration at the moment and I have slept very little since October. This is not the first time something like this has happened to me. But it is the first time I haven’t done it in a deliberate and controlled environment. I spent a good portion of yesterday exploring and contemplating the Buddhist “emptiness” or “no-self”… woah. I have a deeper understanding why many faiths have a spiritual initiation practice involving fasting, sleep deprivation, and psychedelics to have a sacred moment/experience with whatever they consider divine.

Anyway. was .8mmol yesterday. Highest hahah pun I’ve been in a long time. it’s about 10 days pre period and no cramps yet! I got my IUD removed last month and I hope this improves my quality of life. I’m keeping all appendages crossed that the pool opens mid January. Depending on the covid spike from the holiday season it may or may not re open.

My weight has been completely stalled since Julyish. I’m hoping with the trainer/coach I can regain mobility and build back some of my lost muscle mass. That would help fix this messed up metabolism.

I’m going to call my primary care dr on Monday and ask for a full on thorough physical blood work and all. I also want another ultrasound of my liver to check up on my non alcoholic fatty liver disease. I’m also going to ask for him to prescribe me a dexa scan so I don’t have to travel like 5 hours to get get one from a weight management clinic. Waiting to hear back from my neurologist on upping my dose of the dopamax. I seem to only be able to tolerate 100mg but who knows? Since I was completely bed bound yesterday hiding from all sources of light I figure we can up the dose until I’m migraine free for a couple of months.

Will also call the eye dr to get special blue filtering lens for my glasses.

I usually chop off all my hair to about 3mm every week (a buddhist practice for some of us totally not necessary for lay people). But yesterday I shaved my head completely to celebrate the new year. I have a different “concept” of time but I thought I’d join in with the greater community. I don’t really participate in the “resolution” concept (no judgement for those who do!) but I thought some solidarity could be a loving kindness practice. I reached out to a couple of my friends that I knew had a hard year and told them all the things I loved about them.

Not having any hair can really confuse the small community I live in. Since I’m chronically ill they all assume I have cancer or something. I have to explain otherwise because none but the boldest ask.

1.5 mmok today! Highest in months!

[Kristy]

Migraines. 9/10. Can’t be around light. At all. Will see how today works with my husband going back to work. Have my new phone on the dimmest light setting and orange light. Have a bunch of plans to get help

Any way can’t really eat. Feel toosick: so quasi fasting opportunity! I have to take food with a couple doses of pills or they won’t be absorbed. So I’ve been taking them (one is a don’t throw food up pill) with coconut oil. Had a tiny splash of cream in my coffee and that was ok. Thank gawd caffeine isn’t a migraine trigger! Can’t look at screens too frequently but know I’m rooting for all of you!

[Kristy]