Musings of a Fibro Patient

A personal blog of my symptoms in the hope that it will help me in be long run. Public for honesty and awareness. I am not a medical professional. Nothing in this blog should be taken as medical advice.

[fibropdx]

10/7

Somewhere along the way of my symptoms progressing I totally forgot to update this blog. :| I'm not sure if I'll continue this as a day to day thing. Keeping a journal of symptoms I think is super important, but I honestly just don't have the energy right now. If I spend my extra energy focusing on everything that's going poorly right now, it just serves to make me more depressed. I do have to face all of this, but for right now I think I'll try to touch on this blog when I'm able to and when it doesn't feel overwhelming.

[fibropdx]

I had a major depressive episode yesterday. A busy day at work where I had to push myself too hard led to a breakdown and a serious talk with my hubby, which I don't like having. I try to keep those conversations for my therapy sessions so that I don't have to put that burden on him. He's perfect, though. He responded so positively and gave me nothing but love and support and cleaned so much today to take burden of it off of me. I feel so worthless most days since there's so little I can do physically. I often feel like the people in my life would be so much better off without me. I wouldn't be in pain. I wouldn't be a burden. But, I'll keep pushing. As much as I want to, I'm not ready to give up yet. Maybe once everything is more together I'll feel better. Once we get everything in order and I can help more by doing small things. I think I'll focus on the small things for a while.

Things I was able to do today that was helpful:

* put my nail polish away

* made dinner (with help of hubby)

* folded laundry

[fibropdx]

7/2

Super low spoons today. Hubby is working from home so it's been nice to have him with me an extra day to help me out ❤️ Miraculously no cramping after going out to eat last night.

Breakfast: corn tortillas X2, mashed potatoes with chives, green onion, and cheddar cheese, leftover zucchini (don't judge me. It's like a baked potato quesadilla and I love it).

Had 2 squares of a Buddha Chocolate smoked sea salt bar and half a rice cake. Feeling on and off nauseous and very low energy. Around 4:15pm, went to get up and got spotty vision that went away after a moment.

Dinner: Udis gluten free bun, low FODMAP coleslaw made with radicchio, chicken breast with mustard sauce we did on chicken last week, mayo.

[fibropdx]

7/1

Really low energy day. Missed seeing my parents, sent the hubby instead so he could drop off some stuff for them. Spent a long time on the couch. I'm writing this a day late so I really can't remember everything I ate that day. We ended up going out for dinner for a friend's birthday, which of course is very difficult on the low FODMAP diet. I had:

1 real crab nigiri (everything at this restaurant was in 1's which is super weird. Nigiri means 2, people...), 2 inari, 2 tuna, 1 ikura, a cucumber roll, and edamame.

I think the salt from the edamame mixed with me not hydrating well gave me a migraine, or something did. Went to bed with one hell of a migraine and shivering which was weird... Slept for probably 11 hours.

[fibropdx]

6/29

Short shift at work today, which is always nice. First day in about three days that I haven't had to take a nausea med! Hooray! No normal cramping other than period type cramping once at work, which happens time to time since I skip my last week on my hormonal birth control.

Breakfast: blueberry breakfast crumble

Snack: last of rice, chicken, and zucchini

Work snack: couple handfuls of grapes, string cheese. A few raspberries throughout the work day.

Work drink: hibiscus tea with lemon (cold)

Dinner: mashed potatoes with vegan butter, chives, salt and pepper, and green onion, grilled zucchini, barbequed chicken thighs with homemade sauce (low FODMAP Dijon, red wine vinegar, maple syrup, smoked paprika, salt, pepper). A+ to my husband for grilling 3x this week ❤️❤️❤️

[fibropdx]

6/28

Oof, posting this a day late. I'm really bad at keeping up with these things.

Was super tired the whole day and at work. I think I really need to try out my sleeping pills again.

Breakfast: quesadilla with one kiwi fruit

Lunch: leftover turkey tacos (just the turkey, cheese, and sauce)

Snack: a few bites from last night's leftovers of chicken, rice, zucchini, and cucumber

Snack: string cheese

Snack: handful of blueberries, handful of grapes

I didn't realize until about 11:30pm that I hadn't eaten dinner :| wah wah.

[fibropdx]

6/27

Went to the lab to get blood work done today. We're testing for Lupus and Lyme's among other things. Pretty sure I got the new lab guy; he put the rubber band on my arm so tightly that my arm turned purple after a minute and we had to switch to my other arm. Then, when taking the band off the other arm, he tried to take it off very quickly and knocked the needle in my arm 🙄 my goodness. I guess we all have to start somewhere.

Snack before having blood drawn: a few blueberries

Breakfast: quesadilla and a kiwi fruit

Snack: a few gulps of a pumpkin and spinach pack... The kind they have for toddlers. Don't judge me. It's a "I have nothing to eat and this is the only thing in my backpack" backup food.

Dinner: my husband is Grill Master™️. BBQ chicken marinated in soy sauce and ginger, rice, grilled zucchini, diced up cucumber ❤️

Dessert: a few squares of Buddha Chocolate smoked salt chocolate bar.

Had some sharp cramping during my blood draw but other than that I've been ok today. Today is shower day (I don't do strenuous activities and somehow got the don't sweat much gene in the first place so I save spoons by showering once a week. Obviously I have body wipes that I use to make sure I'm not smelling on the day's I don't shower). That ended up taking a lot more spoons than I expected and I almost passed out on the couch randomly so that was fun. I work a closing shift tomorrow thankfully, so I'm going to allow myself to sleep in a bit more than usual tomorrow 👌

[fibropdx]

6/26

I did not eat well today. Woke up super early with cramping. I'm hoping I just accidentally ate too much of something I wasn't supposed to yesterday. Called out from work because the cramping was at a 4 or 5 on its own when it came. Spent the entire day on the couch trying to keep flat. Tried out my Alpha Stim M on my intestinal area. I think I need to figure out the right setup for them. Tried crossing all on top but tomorrow I'm going to try front and back crossing to see if it feels different after.

Breakfast: quesadilla

Snack: handful of blueberries, spoonful of homemade low FODMAP baba ganoush, rice crackers

Dinner: burger. Thank God for my husband. I probably wouldn't have eaten if not for him.

Ending pain levels: 6

Ending exhaustion levels: 7-8

Getting up super early to get blood drawn. We're testing for Lupus and Lyme's among other things.

[fibropdx]

I had a dream that woke me up in tears this morning. I dreamt that I had to cancel a promise to someone very important to me because of my health, and, as they tried to replan the day around it, they looked at me and said, “You know how much of an inconvenience you can be for others, right?” Obviously, it's a dream. The person in it has always been supportive of me and my limitations, has gone out of their way to make accommodations for me. Which is uncomfortable; I've always been the one to work hard to make it easier for people who let me, at work and in life, but these past few years I haven't been able to because of my fibro. And when things make me uncomfortable, I push those feelings down and away and hide it in a room and never open the door again, except when my counselor uncomfortably opens it.

The dream reminded me about my feelings, about how I feel about my disability and my worries of how it affects everyone around me. Which comes down to some main things.

I am overwhelmed. I am frustrated. Things are so out of my control and I don't know what to do; I don't know what I can do. I have weekly appointments: I bounce between my PCP to try to make sense of it physically; a PA who does stimulation physical therapy to try to fix what we can't see is causing it; a counselor who tries to help me come to peace with it; what's become monthly blood work to try to catch things that only show up when you're having flare-ups, and sometimes not even then. We try to figure out, or at least treat, whatever is causing my muscles to randomly shut down if I get to physically tired (which could literally be a buildup of over the week), what's keeping me from getting into a deep sleep, what's causing my nerves to make my skin feel like sandpaper some days, why my intestines feel like there's an Alien living inside of them, why my body has ached since I was a teenager (something I thought was normal for everyone). So, at least we're trying. At least I can try.

Despite all this work, I feel guilty: guilty for all the time I call out from work, despite an incredible department in which I have the support of all and none have ever made me feel self conscious about my disability; guilty that my husband has to help out more than we established early on in our relationship (he always reassures me it's fine, he's happy to help, but there's always that seed of doubt in my head with everything); guilty that we can't seem to put money aside because I keep having more appointments, more things I have to buy to try and improve my health (which I am lucky we can afford to even do in the first place); guilty that I don't reach out to people to see them because I'm terrified of people not liking me anymore if I cancel on them too often; it goes on.

I'm supposed to be normal. I know there are people who have it worse than me. But I'm not mourning the life I could have had; I'm mourning the things I could have done for everyone else. It's all I ever wanted to do. And I feel guilty as hell because of it.

I posted this on Facebook with an addition of what was me trying to assure people that I wasn't ignoring them; another bit of my guilt playing out. I called out from work today because my intestinal cramps were at a level that I was worried would be too much for work. I'm trying out my Alpha-Stim M on them hoping it'll help give some relief. I should probably make that a daily thing when I can. And I'm sitting here crying while my bearded dragon snuggles into me. Health is tough. I hate what I'm going through. I don't really have a point to end this post on... I just need to be able to vent it out so that I stop holding it in.

[fibropdx]

6/25

I'm really wiped from working an early shift. I get sloppy with food and being "healthy" when I'm tired. So, not the most nutritious today. Although, at least the stuff I make is more healthy than store bought... So I guess that's something.

Breakfast: carrot cake cupcake and a nausea pill

Snack: Epic bacon bar

Snack: blueberries, salted sea weed, carrot cupcake

Dinner: tacos, same deal as last week.

Dessert: carrot cupcake 😏 there are carrots in it, right? ¯\_(ツ)_/¯

End of day pain levels: 4 fluctuating to a 5 here and there (my right shoulder is very angry at me for some reason)

Exhaustion level: 7

[fibropdx]

6/24

Tumblr deleted half my draft from earlier and I have to get up super early for work, so really vague and quick entry for today:

Breakfast: string cheese and a carrot cake cupcake with coconut milk frosting (had to taste test for the BBQ today)

Snack: tons of blueberries. I may have overdid it on the blueberries.

Most of the day was at the BBQ, so lots of my homemade baba ganoush and some rice based crackers for dipping.

My friend is training a service dog and teaching it deep pressure therapy. It attached onto me really quickly and learned very fast the right pressure for me and relieved a huge bunch of pain from my hips. So that was something. Maybe someday.

Dinner: burger with cheese, gluten free bun, lettuce, tomato, mayo, Dijon.

Aaaaand bed.

[fibropdx]

6/23

The past two days I've been woken up by my alarm super exhausted. Not really sure what's going on. It's hard to tell if I'm in REM when my alarm goes off and that's why. I have one of those "sun" alarm clocks that gradually gets brighter over a period of 30 minutes until my alarm goes off. The idea is to naturally wake you up without startling (I startle awake if any noise wakes me up) but I've been accidentally falling back asleep immediately as soon as I realize the light is on. Not really sure if this means I need to be getting more sleep than before 🙄 I really hope not. But I may have to start getting to sleep earlier if this keeps being my mornings.

Pain level this morning: 5. Mild discomfort in lower intestines. I may take an antispasmatic just in case.

Breakfast: blueberry crumble breakfast thing I make.

I've been pushing myself a bit lately, which isn't good. The more I push myself, the more tired and physically exhausted I get, the worse my Fibro gets, and it doesn't always go back to what it was before. But, I go slow at work and I have a BBQ to go to Sunday so, carrot cake cupcakes will be baked this morning before work. And I will probably regret it because I got over scheduled this week and I'm working too many hours for my body to manage. But, here we go. I'm dropping my hours at work towards the end of next month. It's going to hurt financially, but it'll give me time to finally start looking at disability and give me an extra day to really take it easy and repair.

Snack: I ate a small bag of Lay's chips throughout the day 🙄 as well as a small bit of leftover chicken and rice with soy sauce on my first break

Lunch break (more like dinner): burger cut up and put over spinach with tomatoes and balsamic vinegar.

Snack: Epic bacon bar (it's one of my backup "if I have nothing else to eat" things)

Snack when I got home: a few handfuls of blueberries. Also had a few pieces of chocolate throughout the day from a Budda Chocolate bar that was a smoked sea salt flavor.

Anxiety levels were high today. I'm working a lot of hours this week and I'm already feeling run down and exhausted. Blech.

While lying in bed I started having a pain in my left knee that felt almost like something drilling into my kneecap. Probably about a 7 on the pain scale. Lasted for a couple solid minutes and then faded as quickly as it came. Super weird. I hate to get fixated on the idea of finding out what's going on with me because it never ends up being what we think it is in that moment, but I do wonder if it's Lupus with all the joint pain I get and the way my face is always flushed which looks fairly similar to the butterfly rash, although it's almost always there for me so it's hard to tell if it's that or just natural red pigment from being a redhead.

[fibropdx]

6/22

Woke up nauseous again. Managed to get through it without medication. It really could be just from going so long without eating when I'm sleeping. My body has always done that for at least the past 10 years I feel like.

Breakfast: regular berry crumble I've done before, this time with blueberries. Gotta mix it up!

My hubby barbequed some chicken last night while I was at work. Salt and pepper on mine 😊 He's good about being careful that he doesn't mix our seasonings up. So I'll have that with some rice for lunch today before heading to work.

Ended up having more chicken and rice for a snack at work. My break got interrupted by a call from a neurology department that I've been trying to get in with (!!!) Super excited that I now have an appointment set for August. My dad has been battling MS since I was 5, and my PCP and my dad's neurologist both think there's a good chance I may have MS because of some new symptoms that have been popping up that aren't normal for fibromyalgia patients (double vision on far away objects, leg muscle weakness to where I sometimes have to use a cane or can't walk much). So, it'll be good to either get an answer or rule something else out!

Dinner: burger, gluten free bun, spinach, tomato, mayo, low FODMAP dijon, fries with salt and pepper, and I made a dipping sauce with mayo, dijon, and smoked paprika. I really can't say enough about smoked paprika when you're on a low FODMAP diet. So much flavor.

I also had some chocolate from a Primal Chocolate Signature Dark bar. Not the best chocolate in the world, but it's low FODMAP and I got it for free at work because we were phasing it out. Scooore!

My cramps have been fairly nonexistent again today. I've also been sticking very tough to my low FODMAP diet so here's to hoping we're making some leeway on that!

[fibropdx]

6/21

I totally forgot to finish this up yesterday 😭 gonna finish it up real quick so I can work on today's.

Happy First Day of Summer! 🌞

Mother Nature woke me up early with one hell of a thunder storm 🌩 We've been getting a few recently which is kind of strange. We don't get them too often in Portland, but the ones we've been getting this month have been ground shaking and awesome.

I'm not able to get into a deep sleep much, which means my body doesn't get to repair at night like most people do. If I get less than nine hours of sleep I'm a zombie throughout the day, so I try to get as much as I can. I was pretty tired last night since I had run low on spoons, so I got to sleep probably around 10 and woke up around 9:30 this morning. Which, I still feel exhausted. But I'm chalking a bit of that up to being woken up by the storm at 7am and having difficulty getting back to sleep.

I got hit with a strong bout of nausea almost immediately after getting up, so, nausea meds, lying on bed until it passes. I used to eat a few saltines if I could during these since sometimes I get nauseous if I need to eat, but I'm trying to stay off wheat as much as possible since it's an inflammatory food.

I'm eating more of those blueberry oat cookies for breakfast. The hubby pointed out that the cookies I make are probably healthier than most cereals people eat in the morning, so I feel a bit better about having cookies for breakfast. Plus, if it made me put on some weight, that wouldn't be a bad thing. I finally made it to the living room to check on Max (happily sitting on his log watching me as I type) and I'll probably slowly eat a few of the cookies until I feel better and can maybe get up to make lunch. I work a later shift at work today, so I can take it slow this morning which is such a gift.

Lunch: rice, veggies (same as previous night minus ginger and bell pepper)

Snack: five chunks of pineapple, half of another cookie

Snack 2 (weird shift at work, only 15s so double snack): more cookies 🙄😂 a few bites of jicama.

Super late dinner when I got home at 10: two tacos, same as previous night (leftovers)

Hardly any cramping today! I don't know if it's a result of the FSM Therapy or that I've been sticking more to the low FODMAP diet, but there it is.

[fibropdx]

6/20 evening

Lunch: another quesadilla 🙄 this low FODMAP diet is difficult for me because I often don't have enough spoons to really cook a meal. So, repeats are a thing.

I went to the FSM Therapy. I didn't feel much during it, which is apparently fairly normal. She ran the treatment for SIBO, Fibromyalgia, Lyme's, and some other things. Right now I haven't gotten specific blood and stool work done, so we're kind of shooting in the dark with this therapy as to what we're specifically treating. Apparently I may not feel much of a difference until tomorrow, so it'll be interesting to see if any changes come of it. It's not a one-time treatment, though, so I won't decide on if it's working based off of one session alone.

Snack: red grapes, a couple strawberries, and a few salted nori sheets.

It is HOT today 🔥 in the 90s, high humidity. One of my symptoms is heat intolerance, which means walking down the street to my appointment costs about 3x as many spoons as usual. If I'm in it for too long, I get shakey, light headed. I've been able to find ways to cool myself down quickly (crush activated cold packs, ice water in a vacuumed sealed bottle so it stays cold, and an electric fan that plugs into my phone) so I'm not sure yet what happens if I stay in it for too long without relief.

This evening ended up being rough spoon wise. Dinner took a lot out of me, and I made cookies as well so that I have something to snack on. Today is also my shower day (I don't sweat much and don't do strenuous activities, so between face cleanser and wipes I don't usually shower more than once or twice a week. I got the unsmelly genes I guess) so that's a big spoon user for me because of the hot water (cold water cramps my muscles) and everything. Going to bed with not many spoons left. I had a good talk with the hubby about having him cook at least once a week for us going forward just to make things easier for me. Cooking is just something I took upon myself to always do since I love cooking, it's not like it was expected of me. But it's nice that he's willing to do whatever it takes to help me out! I see a lot of BBQ in my future! 😂

Dinner: Tacos! White corn tortillas, ground turkey seasoned with cumin, salt, pepper, and smoked paprika, red bell pepper softened on the stove with the same seasoning plus lime, diced tomatoes, cheddar cheese, and a sauce I made out of mayo, olive oil, apple cider vinegar, lime juice, salt, pepper, green onion, and smoked paprika. Seriously, if you're on the low FODMAP diet, do yourself a favor and get yourself some smoked paprika from Penzies. You won't miss garlic as much because there's your pop of flavor.

Drink: chilled hibiscus tea with lemon.

Dessert: I probably ate 6 of the oat cookies listed in the Monash Low FODMAP app. Also, I added blueberries and made it with coconut sugar.

No cramping so far tonight! I'm still going to take my antispasmatic just in case. But we'll see how tomorrow goes!

Ending pain levels for today: 4.5.

Just because today was an exhausting one, let's rate tiredness (not sleepy but exhaustion) as well on a scale of 1-10 (where 10 does not mean it's time to sleep but rather, I'm going to pass out from exerting myself): I'd say a 6 right now.

I really need to start recording how much water I drink. I really don't drink enough of it.

[fibropdx]

6/20 morning

It's kind of weird to me how, after not eating anything for at least an hour, I can go to bed with zero intestinal cramping and then wake up halfway through the night with minor cramping. I take Magnesium and Turmeric at night before going to bed (along with a ton of water), so you'd think that would help do the opposite. Maybe it's the casing on the pills? I could always dissolve the Magnesium in water, but I've tried taking my Turmeric that way and ooh nooo is that not happening 😂 I've even tried spicing it up, making golden milk, etc. To get the 1,000mg I take daily is just too much for my taste buds to handle.

Breakfast today: I almost made my breakfast crumble again, but decided I wanted to switch it up so I don't get too bored with that. So, quesadilla with shredded mozzarella and cheddar cheese on two white corn tortillas, toasted in the toaster oven. I have nothing against the microwave, but sometimes waiting a few extra minutes for a nice crunch is worth it.

Having minor cramping at a level 3 about an hour after eating. Not really sure if it's from the quesadilla. I've had them recently with no cramps, so I'll put this on my "try again" list. Would really like to be able to eat cheese, please!

I'm going to my PCPs office today to try out FSM Therapy. For those of you Pastafarians, no, not that FSM, as much as I would love some kind of therapy to do with pasta. FSM Therapy is Frequency Specific Microcurrent Therapy. It sounds like my PCP has seen really great results for his Fibro patients who have taken the time to really do it, so I'm hoping it will help. I guess they can essentially tell the machine what is ailing a patient, and it sends microcurrents to the body specific to those ailments to treat it. It's different from a TENS/E-Stim unit (which I also use).

One of the huge reasons I stick with my PCPs clinic is because he created his practice to make it easy for people to receive treatment. In the US, it's expensive to be healthy if you have chronic illnesses or injuries. So, I'm very fortunate to have a PCP who charges these treatments as a copay to my insurance, which is much more affordable than the $200/session these can cost at other practices if insurance won't cover it.

Also, a break from my health. Can I introduce anyone reading this to the source of good in my life? In the picture is Max, my bearded dragon. He was rehomed to us by a good friend in January this year. He's the reason I get up in the morning and make the trek to the living room instead of staying in bed all day. This little scaley nugget is a cuddler, and he loves to take naps with me on the couch when I'm low on spoons and need to sleep most of the day. He's a stubborn little guy, but I think there's a lot to be said about mental health and having a pet. He's a good little guy and has gotten me through some rough days. He helps me focus on projects instead of thinking about my health all day (the hubby and I are currently working on setting up a new, super big enclosure for him to enjoy). Yay, pets!

[fibropdx]

6/19

I woke up with super intense nausea this morning, and intestinal cramps. The nausea isn't that strange for me, the cramping is still a little new. The last time I had my nausea meds filled they changed which manufacturers meds they gave me and now it has a completely different taste and I'm convinced they aren't working as well. It's weird how we get used to the flavor of specific things and associate them with what they help relieve. My old meds tasted a little like bubblegum (with a hint of medicine). These ones taste minty and I'm not enjoying it.

Breakfast for today: I found a recipe last week for blueberry oat bars that I liked, but they were super crumbly and wouldn't work well as a bar. Using the basics of the recipe, I've figured out a half assed way of turning it into a quick, low spoon breakfast item for myself. I take a handful and a half of rolled oats, a handful of Cup4Cup Flour, shake in some coconut sugar and cinnamon, add either a slice of butter (melted in microwave) or maple syrup to make everything stick together. Stir to combine. I'm a separate bowl, mash some low FODMAP berries (handful of blueberries or strawberries usually). Take tin foil and make a bowl out of it. Pour half the oat mixture. Add berries on top. Top with the rest of the oat mixture. Bake in toaster oven at 350F for about 6 minutes. It kind of makes a quick and easy cobbler. I can't eat much, so it's a good serving size for me, and it's way more nutritious than my usual toast.

Snack #1: five chunks of pineapple. Also snacked on grapes throughout work.

I bought some ginger and sliced it in the break room at work to make tea since I couldn't find a ginger tea that didn't have questionable FODMAP spices in it (I work at a grocery store. I consider this both lucky and a curse to my health because we sell great, fresh food and I want to eat everything around me). It actually worked rather well and helped with most of my nausea today.

Lunch: leftover BLT salad from dinner last night. I'm still trying to figure out this low FODMAP thing, and I'm pretty sure the maple mustard dressing I made had garlic or onion in the mustard because I spent a long time cramping last night. Although I was fine after lunch today, so who knows.

Snack #2: I actually forgot to eat my snack and I just realized this. No wonder I was starving when I got home.

Dinner: white rice as a base. Roasted carrots, green beans, red bell pepper, and zucchini with olive oil, salt, and pepper, drizzled with a soy sauce, maple syrup, and ginger glaze. Cold chopped cucumber on top. This was amazeballs, holy tasty carrots, and a low spoon meal for me. Hurrah for progress!

Drink with dinner: hibiscus tea in cold water with a lemon wedge. I tend to make these in advance and just let them chill in the fridge. Carbonated beverages tend to upset my intestines so this is a good alternative for me.

Also, Buddha Chocolate makes a Wild Rose & Sea Salt chocolate bar that, based on ingredients, seems to be low FODMAP and is also the most delicious chocolate bar I've ever eaten. So good. I also ate a rice cake after dinner because I can never eat enough. One of the many questions we haven't figured out yet: why I can't put on weight and can't stop dropping it. I'd love to get that one figured out so I can stop feeling like I'm dead.

Pain levels today: probably a 5 this morning, currently at a 4.