Blood Pooling!

Do you all want to see a picture of my feet during a flare?

You're welcome.

Okay okay, I'll explain a few things.

First of all, my toe nail? I've been working on growing a new healthy one since November of 2018. First it turned black, then it slowly started to peel away, then a new nail started to grow and push the old one up. I'm letting it run its course. The old nail will fall off when the new nail has finished growing it. I have no clue what caused it - doctors have shrugged it off after a round of antibiotics didn't work. I think it's getting really close to coming off! Just in time for summer, I hope!

Yes, my toes are very purple. Yes, they feel cold as ice with deep pain in the bones. This is not unusual for me. One of the visible signs of my invisible illnesses.

Yes, my feet are pink. Blood pooling! Very common symptom of POTS. Blood pools in my feet because my nerves don't appropriately tell my leg muscles to constrict in order to keep blood circulating like it's supposed to. So instead of circulation, I collect blood in my feet. It's kind of fun to draw on my feet when they're like this because I can draw white streaks all over them.

Wearing compression socks helps a lot when I'm moving on my feet. I really like the Sockwell brand because they're made with mostly wool, and I seem to do okay with the nylon content in them because they're breathable enough.

I don't like wearing compression socks when I'm resting. They make my feet much colder.

But I do need socks on, like... all the time. My feet are always icy. I love hot foot baths or full baths. I love sunbathing my feet.

When I tried Metaprolol (beta blocker) for my POTS, it made my feet like this 24/7, but colder and more purple. It did reduce my heart rate, which felt good and reduced my heart soreness, but it also increased my fatigue and made my feet intolerable. I'm so happy that works well for many people with POTS, but it wasn't for me.



This image has been floating around on Facebook (I got it off of the Millions Missing page) and I really like it. It's missing the blood pooling text, but shows it in the legs. It's also missing chronic fatigue as a major symptom. I get all of these symptoms, except that I don't vomit or faint (well, fainting has been super rare.) I don't get the facial flushing anymore, but I did get it frequently before I started to work with my doctor. I still get rashes, but not as often anymore. 

Fitness and Conditioning

I wish I could go to a gym and work out for an hour. I often day dream about lifting weights like I used to. I loved the feeling of being sore and tight in my muscles, feeling a natural tiredness from actually using my body well. I loved seeing muscles forming on my arms and legs. I loved shaping my body by staying toned. It felt really good. Now when I look at women in great shape it's a little hard for me. I'm really happy for them, but it makes me want to join them at the gym and get back into shape.

I really do my best to work out, but it's really challenging with chronic illness, and often ineffective or harmful. Let me break this down:

- Fatigue. I often have the mental willpower to sit at the machine and start pumping weights, so I'll go for it. And then I can't even finish a set before I run out of energy. This isn't a de-conditioning issue. If it was then my diet, supplements, and regular practice with the weights would mean I could do more every time. If it's de-conditioning, then I can actually improve. No, this is a problem of my body deflating with every pump of the weights until I have nothing left to stand up with. Every time I try I can do a different amount of weight lifting until the fatigue wins. No, it's not a de-conditioning issue, because if it was, I would be able to consistently do more with practice.

- Pain. I don't mean the normal wear and tear on muscles from working out. You know, the "it hurts so good!" pain that I love to feel. I mean joints on fire. I mean feeling ripping in my ovary from pushing or stretching. I mean chest pain from my HR going really high after just a minute of working hard. I mean throbbing in my head from blood not knowing how to circulate correctly while I'm working out. I mean an abnormal constriction in my neck and shoulder muscles that makes them super tight and in pain for a day or two after, like a cramp that doesn't want to be massaged out.

- Post Exertional Malaise. This is the fatigue that is the result of spending energy. For a healthy person, they might experience it for an hour or two after. They can still get stuff done if they have to, but they'll be tired and lose some motivation and focus. Their body needs to recover and they'll be fine. In my case, and the case of many people with various chronic illnesses, it's much worse. When I spend the limit of my energy or more than I have, it might take a day or two of recovery time to get back to my normal fatigued self. This means a lot more time in bed with brain fog, jello for muscles, disrupted metabolism and bathroom needs, mood issues, high heart rate with a sore achy chest, inflammation and swelling, and an inability to properly care for myself. When this is a normal response from my body, how am I supposed to work out regularly and have the ability to get stuff done? Like, having energy left to spend at my job? I have to pick and choose where my energy goes, as if my energy is money in my bank and the balance is always low.


So I do my best. What can I do?

- Walks. I feel the best results from going on walks, but the distance I can go depends greatly on how I'm feeling. 1 mile is my typical cut off point, but I have been able to go 2 miles on good days. Walking is the least taxing and most gentle way for me to move. I can move longer before my body gives out. The problem is that I live in North Dakota, so I can't be outside for half the year without a lot of weather gear on. Treadmill? I'm not getting a gym membership just to walk on the treadmill near stinky perfume-ridden people. I'm so reactive to perfume that I'll have to leave from feeling sick before I get much benefit from the gym. I've already gone this route with a YMCA membership. I also spend too much energy just getting to the gym. I'd rather just buy a treadmill for at home, but they're expensive!

- Stretching. I was in ballet and gymnastics for my entire childhood. I learned great stretches that I've continued to do my whole life. Stretching actually drains my energy rapidly. I can feel my battery depleting as I do it. But I feel like it gives me the most benefits with the least work.

- Doing short quick sets with lighter weights. I have a weight machine at home that I use, and if I do a little bit of everything over 3 to 4 minutes I can manage. It's not enough to build muscle or tone, but it allows me to use my muscles before triggering too many problems. I can feel my arms tightening up, but I can't find the energy to do enough to make them burn from building muscle.

- Tai Chi... to a certain point. I can't keep my arms lifted up long enough to stay in the poses. I like it because it works me out a lot with little effort, and it keeps me calm in the process. It isn't adrenaline-inducing. But it's physically taxing and I normally cannot make it through a sesson.

- Working on my feet for 4 hour shifts, 3 days a week. To me, going to work is my work out. I spend 3/4ths (or more) of my weekly energy at my job. I'm on my feet walking around, carrying stuff, cleaning, talking, squatting down and standing up, and just plain moving. Work leaves me feeling worn out and exhausted. I have had many many shifts where my heart physically hurts by the end. I almost always have post exertional malaise from shifts, so I'm often scheduled with a day or two between my shifts.


I want to make a special point to say that Yoga is not helpful. Why? I have POTS. Positional changes can be hard for me. Every time I try Yoga I get super dizzy, sometimes it gives me vertigo. It doesn't keep me stable while using my body.


The problem is that I still spend the majority of my time sitting or laying on my butt. It's not by choice, but by necessity. So I have a big flabby butt. The rest of my body doesn't reveal my lack of exercise that much, but my butt screams "I sit and lay too much!" I don't like it.

And that leads me to my next related issue: Clothes.

Notice how fitness and yoga clothes are the norm for women these days? Even jeans are skinny to show off our figures. Now, think of yourself as someone with chemical sensitivities that is reactive to synthetic fabrics, so you can only wear natural fibers and dyes without issues. Okay, now I want you to go shopping. Look for organic and natural clothing companies: Tasc Performance, Pact, Adventura, Synergy Organic, Toad and Co, Fisher's Finery, PrAna, Ten Tree, Groceries Apparel, Green Apple, LA Relaxed, etc. Find me some pants without added polyester that won't showcase how big my butt is. Please. And leave it in the comments when you find a pair. ;) Organic companies tend to make clothes for people who love fitness and have good bodies. Yes, they'll make sizes up to XL, but their pants (aka leggings) still tend to be tight. Almost all of these brands tailor their pants for women who do not have a curvy butt and wider hips. Maybe the problem is that I'm a size 8-10, I'm not overweight.

So I buy the pants and wear them, but I'm not happy about showing off just how out-of-shape my butt really is. I'd rather that my pants had enough thickness and structure to flatter my butt. But that's too much to ask, apparently. Carve Designs made a pair of jeans that fits my curvy figure and they're awesome, but I don't like the short inseam with the frizzy cut off bottoms. If they were full length pants I would hem them, but they're 29" - the perfect inseam length for me, so there's no room to hem.



I'm typing this post thinking about how badly I want to tone up. My mental energy wants me to go work out. My body is dizzy, feels like a brick, is sweating just sitting still in the cool air, with weak jello muscles, freezing icy cold toes, and keeps forgetting to breathe because it wants to stay still. I worked yesterday, and it was a physically demanding shift. Post exertional malaise.

Just sitting here feeling weak

It's amazing how much I can roller coaster. For the last month I've been in the very low part of the coaster. I keep thinking I'm at the bottom and I'll start going up again soon, but in the last few days I did get lower. Oi! I'm working on my second cup of black tea this morning. I woke up at 5 am and then again at 9 am with a powerful headache on the top of my neck. It wasn't that I was struggling to keep my eyes open, it was that it was physically painful to be awake. Not grogginess, just very low energy and strain in my head and eyes. There was no going back to sleep though. I have been taking naps in the afternoon the last few days as well, and I normally (95% of the time) cannot nap during the day (or even fall asleep naturally at night). I have just been overcome with heavy weakness, brain thoughts coming to a grinding halt, and an exhaustion that lulls me to sleep. It's actually nice to feel real sleepiness - I forgot what it felt like.

45 minutes ago I wouldn't have had the strength to sit at my computer and type. I'm not feeling good yet, but I'm sitting cross-legged on my chair and reclining, which is just enough to help me manage. But you know what relieved my headache? Not caffeine this time. A shower that was as hot as I could tolerate. I sat down and let the near-scalding water hit my neck. I could feel a rush of blood to my head (but I was too tired to hear Coldplay sing in my head) and the headache lifted. Then I got out of the shower and it started to come back. Then I ate some meat and it started to go away. This feels like a low blood pressure and low blood sugar kind of day, but I've been way too tired to bother to check either. I did see a doctor a few days ago and my blood pressure was something like 90/65 - I had a narrow pulse pressure. And they had my talking a lot as they took the blood pressure, so I'm sure at rest it was lower. I also had to get labs drawn and the first nurse totally gave up on me. She couldn't find a vein, so she put a hot pack on my elbow. It didn't help, and my hands remained purple and ice cold. So she got another nurse to come in. That nurse had the same problem, but she decided to just push the needle in my elbow and move it around until blood came out. Ouch, yes, that hurt. She had to go deep too.

I'm starting to give myself a stomach ache with this tea... and energy is not affected at all. All I know is I have to be ready to go to work in 1 hour and 45 minutes. Not entirely sure if my body will cooperate. I can't stand up long without POTS kicking in and making me collapse to the floor. So here's to hoping compression socks, more salt and licorice herb, more food, more caffeine, and being forced to move a lot help.

Yearly Reflections

Hello world, my old friend. It's nice to think of you again.

Today is a day in which caffeine is only increasing my heart rate and blood pressure a little, not giving me energy. Well, perhaps enough energy to type this, but certainly not enough to move. I am one giant brick. A brick with itchy hives on my back. AGAIN. Round 4 of hives. If I had to work today I am not sure if I would find the strength to manage. All I have to do today is go to Fed Ex to make a quick drop-off. It's a 3 minute drive from my house. I'm having a difficult time even imaging myself making this trip. I have learned that when I am capable of imaging myself doing a task, then it means I have enough energy to handle it at some level.

Today is News Years Eve, the ultimate day of reflection and looking forward to new beginnings. I've been really moody for a few months - like out of control at times - so I partly want to do this post in defiance of my chronic bad mood.

So I'll be blunt.

2019 did not offer any changes to advance my healing process. That's about it. I'm the same as I have been. Exhausted, in occasional pain that ranges from mild to severe, not sleeping well to sleeping too deeply, weight has stayed between 10-20 pounds higher than I'd like, and nothing I've tried has improved me. 2019 has been a year of management.

So instead, I'll go over some of the highlights for me this year:

- I bought an Instant Pot. I HIGHLY recommend it! It has been saving time and energy, and I'm making better quality foods because it does so much of the work for me.

- I got to go to a Weird Al concert that took place 5 minutes away from my house. That was super fun - and he walked right in front of me! As a friend pointed out, this is my lame claim to fame now. Ha! This was one of those "worth getting sick" experiences, and I'm only remembering how much fun I had, not how I felt.

- My husband has begun grad school to get his doctorate, which has required him to live 3 hours a way for a few days a week. It's nothing against him, but it has given me more quiet alone time at home to be fully at rest. It's been very helpful in those moments, but also has been more stressful when he is home because the chores have increased. It has been a good experiment for me. I need to learn how to rest better and exercise my limited energy better, and I have better clarity on that now.

- I took care of a new garden this summer. My husband and father-in-law built it. Unfortunately, the weather this year has been difficult. Summer never really came before winter hit early. If I consider the weather, the garden was a success. I grew herbs and veggies and was able to eat them. Not everything grew or produced, but some things did. The energy required was a little more than I had, so it meant sacrificing doing other chores like loading the dishwasher. But I enjoyed it more!

- I have been able to develop deeper friendships with a couple of my friends, and I have people I can talk to every day about anything now. I struggle a lot with friends in person, simply because of the energy it takes. I almost always feel like I'm in a competition with everyone I talk to in person, a competition of give and take of energy. But talking online to people who are similar to me in terms of health struggles is awesome. Our energy can go into only typing to each other and reading responses on our own time. It's the lowest energy required, and it's allowing me to develop the strongest friendships I've had in many years. I'm really grateful for these people!

- The more I reflect on this year, the more I realize that this year has been about supporting my husband instead of doing much for myself. He has been taking on a lot of new challenges and succeeding. I do not believe there is any shame in women thriving in their roles of being a wife and homemaker over any type of job or career. We have moved towards a society in which women are judged on success based on their careers and how much money they make. I call BS. We should be judged on how much love we put out into the world, and that doesn't have to have anything do with money. I am valuable, and I have worked hard to understand that this year.



And so, world, I will enter the new decade in several hours. Do I need a fresh start? A new beginning? Oh yes, for sure - I think? But I won't get it, and that is okay. Next year will be a good year if I continue to manage as I have this year, and I don't foresee any major changes for me coming up this year. But I do have hope for the next decade that I will learn how to do more than manage. Perhaps I'll find the energy to finish writing my book and publish it. Perhaps I'll find a way to make more money without worsening my health. Perhaps I'll find a breakthrough with my health and get to live life with more energy again. Perhaps I'll get to experience major life changes that will give me new challenges that fit my energy level. It is very very likely that we will move. Maybe to a new city or state, maybe not. But the time to live in a place of our own is coming soon. Whatever this next year and decade have in store for me are worth looking forward to, even if it's more of the same for a while!

And now I might see if I can get a ride to Fed Ex. Ha!



But first, 10 year challenge:

2009:

Happy, full of adventure and wonder, loved to explore!

2019:

Still love to explore and enjoy being myself, but with a stoic spirit and relying on someone else to help me get around. I cut my bangs back to how they were in 2009, haha. Simplicity is easier.

Sleep Study

Last night I went to the hospital and stayed the night for sleep study. It's been years coming, and I finally went through with it. I recorded a video for this blog. I was too tired to type about it. I look horrible - because I haven't been sleeping! This isn't a beauty contest. I'll look beautiful in other photos. Ha!



Some highlights:

- I didn't sleep much.

That pretty much sums it up!

Okay, but in all seriousness:

Sleeping pills didn't help. Being totally exhausted from several nights in a row of losing sleep over hives didn't help. I didn't sleep for the first 3 hours. I couldn't get comfortable. My rash on my ankle woke me up when I was finally sleepy. There was too much light and too much noise. I felt alert the whole night, like I was waiting for the next instruction. I feel like that at home regularly though. I don't ever want to have to do this again, as that was not at all fun trying to sleep and failing at it for hours.



This rash drove me nuts! I was worried I might get told I have to reschedule because of my hives. I was given the option. But the itching has gone down so much that I decided to just go for it. Except for this rash. I think it got worse during the study. I am sure I would have slept maybe 30 minutes more if this didn't bother me so much at 4:30 am.



I won't get my results for 1 to 2 weeks, so I can't tell you. What I can tell you is that my Oura Ring gave me a low sleep score, showing my heart rate never lowered below 80 during the study. (The Oura Ring is not good at determining if I'm actually sleeping or not. It thinks laying in bed with my eyes closed means I'm sleeping. It cannot detect if I'm awake when I'm laying still, so these results are not the reality of how long I slept. It also only shows me as awake when I physically move, not open my eyes. I opened my eyes and remained still a lot during the study.)


















I was worried about being reactive, and I was. I have rashes where the wire pads and glue were. They're not awful - not as bad as my hives have been. But my skin is not a fan of this stuff.



Getting that glue out of my hair was not nearly as challenging as I was told it would be. The lab tech advised me to use conditioner in my hair first, then use hot water to shampoo it all out. That might work, but I didn't try it. I soaked in a bath that was as hot as I could tolerate. I filled it with baking soda and epsom salts. It took about 15 seconds of soaking my hair in this bath water for the glue to come out. No problem! But after I scrubbed all the glue residue off I had to drain the bathwater so I wasn't soaking in it.


I'm pretty sure my hair is thinning out. Sigh.


I don't really know what the sleep study is going to show. I'll find out in a week or two!

3 Days of Rashes

Rashes! For 3 days! I'm puffy, swollen, have hives, have rashes, and I'm positively miserable. I'm very fatigued and feel almost no emotional capacity.

No, I don't know what is causing this, but there are possibilities. I'm going emotionally numb after all the heartache I've been through. (Someone tried to commit suicide again last night, and I'm just... I have nothing left to process it with.) I also started my period 4 days early, in contrast to being over a week late the last few months. It was much more painful than it has been and came with other bathroom issues. My diet hasn't been bad, but I've been eating less protein than I should in favor of more easy nuts and seeds to snack on. It's possible I can't tolerate that much. The weather is also making drastic sudden changes a lot, and I tend to flare during sudden changes like this. I'm also still on my doctor's mold protocol and maybe it just took a month to push out this much through my skin. I took a sauna when I was little too weak to handle it. My sleep has been... really bad. And then last night I was able to sleep solid like a rock because my period started. There's a lot of possibilities.

Anyway, I'm miserable. I feel like my hormones all dumped out of my body and I don't have any left to be human with. I'm in pain and itchy. I feel way too weak when standing up, occasionally out of breath and sweating just from standing. POTS is in full swing right now, and I'm vibrating even just sitting or laying down. I'm so over this.

Forgive me for not writing more informative posts like I used to. I'm just dealing with this. It's all I can do.

The Mushy Mush

I'm pure mush. Scattered unfocused thoughts, body feels and moves like jelly, highly creative dream like state with zero energy or care to apply it to anything, and a stagnated digestive system that doesn't know what it wants. I keep trying to find something to do with myself today, but after about 30 seconds of anything I turn into sludge and feel sleepy. This is PMS - it's more than just mood issues, pain, nerve issues, cravings, and acne.

I don't really like watching much TV alone because it's not interactive enough for me and I get restless, even when I'm overcome with fatigue. I like certain shows or movies when I'm watching with my husband or friends, but it's never a first choice when I'm alone. But watching Carmen Sandiego (new Netflix series) has been the only thing I've been able to enjoy today.

I don't really feel like talking to people, playing my game, sleeping, cleaning, cuddling with my pet birds, reading, working on my Spanish skills with Duolingo, sewing, drawing, listening to music... I'm just existing and being useless.

If I was forced to overcome this and go to work at a job how would I do? Well, it would require caffeine, licorice root, more adrenal complex, eating properly, and a whole lot of motivation. There's no way I'd perform well and I'd just prevent recovery by pushing myself. I'm overspent from pushing myself too hard yesterday to perform well at work. There is a point where my body will simply refuse to function well despite what I take to help it. I'd end up spacing out, forgetting things, stuttering and slurring my speech, dropping things, and finding myself unable to find mental energy problem solve.

Mush. Just pure mushy mush with stabbing pain thrown in here and here, even though occasional nerve ache in my leg.