Permanent Toe Nail Removal Surgery

Ha - I discovered this unfinished post as a draft. I'll publish it unfinished, nearly a year after the event. I should write an update on this situation, as my toe has not healed yet... 

The post:



Ooooookkkkkkkkk..... this is not a pleasant one. Permanent toenail removal. 

I'm NOT going to share photos of the wound. Unlike other bloggers... I didn't want to see their photos.

It would make you squeamish. I want to share my story to be helpful, and I know that gross photos will scare people away. I am going to share a few photos of bandages, shoes, and how my toenail used to be. These shouldn't be too much for anyone. 

PART 1: The Story

I had my left big toenails (yes plural) removed on October 18th. The damage began in 2018. The nail broke off the cuticle, a new nail grew in under it and pushed the original dead nail up. Then that new nail would break off and the cycle would repeat. I had 3 nails on my toe ever since, until this surgery. The nails were curling more and more as the years went on, and the pinching feeling was becoming unbearable at times. I didn't have a choice. It had to be done. 

Why did this happen? Well a Pulmonologist and Neurologist both thought that it was a side effect from taking Metaprolol to manage my tachycardia from POTS. Metaprolol did help lower my tachycardia, but it worsened my already poor circulation. My feet are normally icy and purple, but Metaprolol amplified the problem. I was going numb from cold, and my fatigue intensified too much. I had to stop taking it. These doctors said I probably cut off oxygen to my toes and I'm very lucky I only damaged the big toenail. I have had streaks on my other nails ever since, but I didn't lose them. 

My surgery was a horrible experience. Be warned, this story is something of a nightmare!

It wasn't exactly planned - my appointment got moved up a few weeks early, and I only wanted him to trim the sides down to reduce the pinching. I thought I could hold off on the surgery for another year, at least. Nope, he took a look and said I can't wait. So I had to get mentally prepared VERY quickly. I agreed to it, I knew it was coming eventually and already accepted the fate of my toe, but I didn't know it was going to be right then and there. 

The podiatrist has good bedside manner and has been good with me since I started working with him in 2018. I thought he was a good doctor. The trouble is that he works as quickly as possible, and he leaves the room quickly every time he isn't needed to do something for me immediately. He injected the numbing serum, I waited 10 minutes, then he came in and immediately started to put the tool under my nail. I could feel it! He didn't test my toe before starting the operation. He injected more numbing serum in a few spots closer to the nail until I was numb. Then he asked me to explain what POTS was. I looked away while talking, and in what was probably less than 2 minutes he said he was done. The top two nails came off very easily, almost without effort from him. That could have been a problem for me if I hadn't gone in for the surgery. And then he was gone and I never saw him again. 

His nurse is incredibly kind and friendly, gave me the attention I needed to pull myself together, and I loved her, but... and I don't know how much of this is her or the fault of the hospital being stingy...

She sprayed the wound with cold alcohol, then put gauze directly on the wound then wrapped it tight. Gauze absorbs blood and the blood will stick and dry to it. I'll follow up on this point soon. Then she did not give me a post-op shoe. She stuffed my sock back on my foot, then stuffed my foot into the boot I came in wearing. Which is a tad narrow because my feet at are a tad narrow, but they were no longer a tad narrow after swelling up my toe and putting a thick bandage on me. My big swollen toe was STUFFED into my tight shoe. Was as tight as possible. And I wasn't given a mobility aid. I walked myself to my car. I drove myself, not expecting this surgery. 

I was not prescribed antibiotics or anti-inflammatories, which I later learned is the gold standard of this surgery. No mobility aids. I was given bandages with padding smaller than the size of my nail bed. And told to go home and soak in epsom salt water. She told me to take aspirin or ibuprofen as needed... and let me tell you, I WISH I was given something stronger. I needed a lot over 3 weeks, which is so bad for my liver.

I made it home, pulled my boot off with a very uncomfortable tug, rested, and the numbing serum slowly wore off. I needed extra of it and it wore off within about 1.5 hours. I was told it could take up to the rest of the day to wear off, but no, that's not how my body is.  

Then it was time to change the bandage and soak in a foot bath. The gauze was glued to my wound, and I didn't know how bad it was going to be. She did put a thin amount of antibiotic gel over the cuticle, so it should have prevented the sticking, right? No, because the worst wound was up higher where the dead nail was attached. So I pulled at it a little. OUCH. I definitely swore loudly. So, not knowing what else to do, I sprayed it down with water until it detached. I was bleeding, but I did exactly what my instructions told me to do: put my foot into a foot bath with SALT. Epsom salt. To reduce swelling and clean it. An open wound on the most sensitive area of the body. In epsom salt. I screamed so loudly that I'm sure the entire block could hear me. I shook so hard from the shock of the pain that my husband had to hold me still. OUCH. OUCH. OUCH. No swear words were strong enough for that situation. 

But I continued to follow my instructions, and I put gauze on the wound and bandaged it. Guess what happened when I had to change that bandage? Yep. Screaming and crying.

So... the wound kept getting ripped open, despite my soaking the wrappings to peel them off. The wound couldn't heal. 

That's when I sought advice from friends who are medical professionals and got creative with the supplies I had.

My husband bought me whatever he could find at CVS. I couldn't do the foot baths for the first week, even without adding epsom salt. I tried and it had me in tears every time. So instead I sprayed iodine liberally all over my foot and the wound. I let it soak in, then I sprayed an antibiotic with lidocaine mix. I used witch hazel soaked pads with alcohol in them to clean all around the wound, but I couldn't touch the wound itself. Way too painful. Cleaning the wound with any pressure was going to have me in tears. 

I used extra large bandages and tented it over the nail bed, so that the pad could not touch the wound. That was the only method that was working for me. The trouble was when I accidently moved my toe in such a way that the padding did touch the wound, which was still bleeding after more than a week, and the padding stuck the wound... then rippped at it. There went any healing progress! I tried a different method of bandaging the wound with smaller bandages, and the adhesive touched the wound just enough that I couldn't rip it off.  The only way I could get the bandages off in both situations was to soak my whole foot in a foot bath. It stung like crazy! But eventually, after about 10 minutes each time, the bandages released and popped off into the water. And that's when I realized I was able to tolerate the foot baths well enough to do them to clean my toe out. But not with epsom salt. I used colloidal silver in the water instead. 

So I thought through it. I decided to put antibiotic gel directly only the pad of the bandages, and I painted it with a sterile pad to coat the entire pad. That worked to prevent the pad from sticking to the wound. That is what I should have been doing the whole time, and I never should have attempted a smaller bandage. 

But then... about 2 weeks into this nightmare, I started to get a lot of pus. White, not yellow, but a lot. Everyone told me it was time to see a doctor - a different doctor. I mailed my podiatrist photos of my pus covered toe on a Thursday evening, thinking I would get a response the next day. At 11 am the next day the message showed it was read, but I never got a reply (at all - not even by today.).

So by Friday afternoon I decided to go to the walk-in clinic, and it was a very good thing I did! The doctor was an ER doctor and the nurse had podiatry experience. Both excellent! I told them how I was I treated - I mean, not treated. They couldn't say much, but they did tell me how to take care of myself correctly. The nurse swabbed my toe bed to do a culture - OUCH OUCH OUCH. Holy @#$%^. And then the doctor put me on antibiotics. She attempted to put me on an anti-inflammatory, but I was allergic to all of them. She wrote me a note to prevent me from going to work and told me to get off my feet no matter what! The nurse taught me how to bandage properly, and even gave me scissors to cut bandages exactly right. Then she told me where to go to buy a proper pair of shoes to recover in (I'll get into the shoe issue in the next part of my blog.)

That was exactly 1 week ago. I took my antibiotics, got my proper shoes, bandaged correctly, got off my feet as much as possible, let it breathe more, was able to clean it in foot baths, and elevated it more often. In the last 48 hours I have FINALLY started to heal. I was at a 8-10/10 level of pain managed only with ibprofen for 2.5 weeks. In the last 48 hours the pain level went down gradually, and I haven't taken pain killers in this time. I now am at a 2-3/10 level of pain when resting, and it goes up to a 5/10 when touched or walking too much. The tenderness on the nail bed is 50% reduced. 


PART II: Complications and Solutions

Shoes:
MAKE SURE YOU GET A POST-OP SHOE BEFORE THIS SURGERY. Don't rely on your doctor to give you mobility aids. And trust me, you will need it. Think through this: you have to put all your body weight on your foot to walk, which increases pressure on the wound, which is on the most sensitive part of your body. Consider using a cane too. You're not being a baby. Keep weight off that toe if you want to heal!

I couldn't find a post-op shoe in town. I spent a week looking and asking around, and it meant I was hobbling around on the side of my foot without a shoe, which lead to ankle pain. All I could find were expensive boots for ankle recovery. I tried all the shoes I own. The ONLY shoe that I could make work was a Teva sandal, and it wasn't comfortable at all, but it was all I had. I went to work wearing that sandal and it was borderline not acceptable for all the walking I had to do. 

The nurse at the walk-in clinic sent me to The Uniform Center on 3rd street in Bismarck. Their new shoe store, Happy Soles, was phenomenal. The lady who helped me has been through the surgery too, and her daughter has POTS. She understood!! She was able to fit me in an open-toed slipper that's been saving me. It has a thick sole that isn't flexible, so it's keeping me stable, and I don't feel the ground. It has Velcro straps on top so that I don't have to slide in and out. I strap it on. It was a game changer for my recovery!!! The velcro is very impotent: I couldn't slide into slippers because of the size of the bandage and the pressure. I needed straps that come fully open so I could simply step onto the sole and then strap in. 

POTS: 
Okay - this really really really complicated issues. I wasn't prepared for the biggest issue at all: blood pooling in my feet. 

Covid Vaccine Side Effects....

I've been hesitant to say anything on social media about my choice to get the covid vaccines. I know many of you will not approve, so please don't start an argument with me. I spent a lot of time researching the benefits vs the risks, and I decided that the benefits outweigh the risks, especially due to my health situation. Covid has the potential to undo all the hard work I've done to manage my illnesses, and I'm not willing to throw away 8 years of intense work to have this level of stability (and I'm far from stable!) I determined that the vaccine is less likely to cause me long term harm than Covid itself, and it would completely idiotic to assume I won't catch covid eventually.

I would go into more detail on my research, but I don't have much energy at the moment. It all boiled down to UK studies showing that people with post-covid POTS were going into remission from the covid vaccine, and the rate of people developing POTS from Covid is substantially reduced in vaccinated people. The last thing I want is for Covid to worsen my POTS. The vaccine side effects are better than worsening my POTS. I also just don't handle viruses well. Ever since H1N1 I haven't been able to handle getting sick. I take really good care of myself and don't get sick easily anymore (I did as a child and teenager), but now when I do get sick it knocks me out twice as hard and twice as long as everyone else. Covid could be really dangerous for me. I've been avoiding people the best I could, but it wasn't possible anymore since fewer and fewer people take any covid precautions. 

But I do want to share a bit about my experience to contribute to the conversation. I was hesitant because I was nervous about how my body would react to the vaccines. Last year I had a tetanus shot that left me with side effects for 2 weeks! It was miserable! But my motivation to help end this pandemic (since not enough people are willing to get vaccines to help protect the most vulnerable) fueled me to research this covid vaccine and just do it. 

I got the Moderna because I have the most trust in their company.

My first shot gave me 3 days of side effects. It was not fun, but it wasn't as severe as I worried it would be. I tasted metal in my mouth, had a constant headache, lots of heartburn, my gut was in a lot of pain and caused some unpleasantness in the bathroom, my joints were swollen, I had occasional chills, a sore throat, and my toes were more purple and freezing cold than normal. The 4th day was better, so I went for a walk that ended up being more strenuous than I could handle, and left me with another couple days of malaise and fatigue. I wasn't ready for exercise and I paid hard for it. Then I started to return to my "normal," but all month I had a struggle with chest pain and heart burn. I kept taking so many pills to try and stop it and nothing was helping enough. I had to go home early from work a couple of times because the chest pain was so bad that I couldn't focus. I had about 1.5 weeks where the chest pain and heartburn subsided before getting my next shot.

Then I got my second shot 5 days ago.

Monday morning at 10 am I got the shot. It only took a few minutes for an elevated heart rate to start bothering me. It took about an hour for increased fatigue to settle in. By 5 pm that evening I was in pain. A LOT of pain. I don't just mean my arm. It was like a full blown fibromyalgia flare on steroids. 

Tuesday morning I woke up in tears. The pain was enough where I considered going to the hospital, and then it felt like I had the flu on top of it. Every muscle in my body was screaming, tense, and giving me sharp pains when moving. My calves were twitching and spasming. My circulation was much worse than normal and my toes were so purple and cold that I couldn't move them. My neck and head felt like they were imploding - like they were filling with gas that was trying to expand them. I couldn't touch my skin because it was tender and sensitive the way skin is with the flu. My fatigue was strong enough that it was really hard for me to get out of bed and take anything to help. I ended up collapsing when trying to stand up. It wasn't possible for me to stand in one spot. If I was on my feet I had to keep moving or I would faint. POTS made the vaccine worse, or the vaccine made the POTS worse? Don't know.

Wednesday was still very bad, but different. The body pain mostly moved up to my head and chest, but my joints still ached mildly. The chest pain began, the heart burn kicked in, and my headache was worse than ever. The sore throat begin. 

Thursday the pain reduced enough where I felt relief, but the chest pain continued. I could finally start using my arm mostly normally. The fatigue was still too much, so I couldn't accomplish much. The sore throat and headache were bothering me a lot. I was still icy cold. 

Friday, yesterday, was the best I had felt all weak, but a new problem occurred: diarrhea. I don't just mean a little. It was dangerous to be away from the toilet. My body was in purge mode. It lasted the entire day up until bed time. I had to go grocery shopping, and it was the scariest grocery shopping experience since all I was thinking was that at any moment I could have to drop everything and run to the bathroom. My fatigue couldn't improve much under this situation. My chest pain reduced a little bit. The sore throat and headache reduced too, but still came and went. I noted how incredibly pale I looked. I was just out in the sun for most of last week, so I have a decent tan. My face was sheer. 

Today, Saturday: My head is still going in and out of a mild headache. I don't get headaches often, so this is not normal for me. My stomach and gut still give me occasional sharp pains and gurgles, but I returned to solid. My fatigue is still stronger than my normal, but I had a cup of green tea to help me get something done today... which is writing thig blog, apparently. I still feel like it's too much effort to get out of my chair, but my mind is working better than it has all week. I feel like I might be in the stage where I'm past the vaccine side effects, but my body has to recover from being so sick. 


If any of you understand how to read sleep data, then here are my Oura Ring results from Monday night into Tuesday morning:

  

For reference, here was Sunday night into Monday morning:

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!

Processing Depression Caused by Events

It's so easy to feel defeated. I've had a rough couple of weeks, and these experiences have led me to feel really depressed.

I have had several friends with severe medical emergencies and I had reason to worry for their lives. All at the same time. If one of these friends of mine does not survive it will be the second friend I will have lost to cancer. Another friend has been so sick that she became suicidal, and at times resistant to help. Of course I fought hard to help her fight for her life, but deep inside I couldn't help but wonder if I could fight if I was in her situation. Another friend ended up on life support after a car accident - that has been devastating. I also know 2 people who have had heart attacks recently. It's... overwhelming, to say the least.

And so, I decided to watch "Call Me Francis" / "Llamame Francisco" this week. I needed a true story about hardship to help me gain perspective. I also genuinely wanted to learn more about Pope Francis and Argentina. The mini-series does not educate or explain anything. It assumes you understand Argentine history fully. I had to talk to an Argentine friend of mine and do a lot of reading on my own to understand the circumstances in the story. Hours of research for 4 hours of show, but it was very enlightening. Learning about the Argentine 70's crisis with the military coup and the dictatorship was very interesting, but I don't know if I was in the right state of mind to learn about it objectively. Between the show and my research, I couldn't help but cry a lot over the kidnapping of pregnant mothers and the illegal adoption of their children. I cried when they showed the military throwing family members out of planes. Watching a story about how Padre Jorge (Pope Francis now) was actively involved in negotiating how the church helped these people was very enlightening. In the end, I learned that Argentina, while not recovered from these horrible events in the 70's, loves its people. They struggle with a terrible economy and a very high poverty rate right now, but they take care of themselves as best they can, because they actually care about offering the best quality of life that they can to their people. But I cannot help but feel shaken from learning about their recent atrocities. (No, don't tell me about other atrocities in world history to go learn about, I don't have the heart for it right now.)

I'm finding it is actually really difficult for me to read or learn about great people that live their lives well and accomplish a lot with their lives. Of course I'm extremely grateful to Pope Francis and admire him very much. (Don't let that statement get religious political - I don't care about your arguments about his church leadership right now. I'm referring to how he navigated the dire circumstances he lived through.)

But as I learn about these people I keep asking myself why I haven't figured out how to do great things with my life. Why are my years being wasted on nursing my health and entertaining myself in the process? Why are my talents and skills not getting developed so I can use them to help people in the world? A major reason is my chronic fatigue, but another major reason is my personality. I've never wanted to dedicate much time to developing skills beyond what was helpful enough to me to get tasks done, when it always felt more important to me to dedicate time to understanding people and morality. I'm one of those people who sits back and observes and reflects for years too long, and by the time I am ready to act, I find the next passion to ponder on for years too long. What do I do with all these thoughts? But how long have I really had this chronic fatigue? I might not have recognized it when I was younger because I was used to being that way, plus I'm introverted. When it caused me to be totally bedridden then I took notice. If not for the chronic fatigue, would I have done more action in my life to be more accomplished?

I'm feeling insecure. I feel like I should be doing great things despite my disability. I want to leave my mark on the world. But sometimes I can't see beyond my friends who are suffering so much. Sometimes I can't see beyond how terrible people have been throughout human history, and those who did great things for humanity make me feel like I'm not contributing to making the world better the way I should be. What is my purpose? I can't wait until I heal - what if I never do? What can I do in my current condition that won't overtax me and make me worse? I'm finding that what I am doing is overtaxing me and making me worse: I'm caring too much for people. I invest my energies into being their friends. It's not their fault, there is nothing to blame. It's just who I am. I just care. Too much. But if I make myself go numb to help me emotionally then I'll lose all sight of my purpose in life.

The USA's healthcare is a nearly complete failure for most of those with chronic illnesses. It leads people to suicide. It's way too expensive, doctors are too overworked and can't dedicate time to patients, doctors that are not trained in the illnesses try to poorly treat or dismiss us... it's a nightmare. And I'm one of those depressed chronically ill people who is feeling lost in the system. I am way better off than many people - so many people are substantially way worse than me. My disability is in the middle of the severity spectrum - I'm moderate. It significantly impacts my life, but hasn't completely stopped it. Too many people live in the severe category, in which their disability has completely prevented them from doing anything more than just staying alive minute by minute. I have the same struggles with the system, but it's not as dire for me. So trying to convince suicidal friends to use this system, because it's the only system there is, feels like I'm encouraging them to not get properly cared for so they can feel even more hopeless. It's a nightmare.

And so I have to keep reminding myself that saving the world is not my responsibility. I can't let world problems crush my spirit. At best, I need to keep my focus on my friends that I can do something for, even if it's just moral support. Being their friends, even though these major health issues, has helped me as much I hope I help them. Is it a waste of my energy? I don't think so. I might be full of grief and feeling depressed, but my heart is full of love because of them. I would feel depressed if I didn't have friends, or had friends who were healthy and so we can't relate to each other.

Flu then Pnumonia then "Recovery"

First my husband came home with the flu and he was absolutley miserable. Then he had a week where he felt well enough, and I developed the flu. Then I started to feel slightly recovered and he developed Pneumonia. I had a week where I felt slightly ok, but had an extra painful endometresosis couple of days. Then a week later I got Pneumonia. X-rays and doctor confirmed Pnumonea. It looked like I had spider webs in my lungs. I was so incredibly sick, unable to lay down to sleep, that I willingly took the antibiotics. It turns out I'm allergic to amoxicillin, so then I had a few days of rashes and hives that left me in tears. I had to take antihistamines and lay in a baking soda bath for hours to feel even slightly comfortable again.

About 2 months of this is way more than I can handle. I'm still coughing up big wads of green from my lungs, and my ears often won't pop. Add to it severe negative windchills (as in we got below -40f several times), followed by a massive snow storm of 10 inches, and now tonight we're due for the next massive snow storm. We're in blizzard warnings right now.

I'm stuck inside of a house that I don't have the strength to clean, and I can't open the windows to air it out.

If I've been very grumpy, distant, selfish, unresponsive, or unsupportive... well I'm not sorry! I have not been well - no, I have not been ok!

My body is weak to begin with, so when put through the flu and Pneumonia back-to-back, you should not expect me to simply recover and get back to my life. My POTS has been strong, my fatigue intense, my sleep is a major chore... but more than anything, talking to people is the worst. I can't break out of my own head, and it's not even a choice - I simply can't listen. I'm trapped in a prison in my own head and everything you say bounces off those prison walls. I can't handle myself, so I cannot take you on.

I've pushed away my friends both online and in person. It got to the point where I almost felt like I resented them, almost hated them. I didn't want to talk, and I didn't want to listen. I hate that I ever felt that way, because I love my friends. But even now I still don't enjoy talking to them because I don't have the energy to engage. I don't even like TV shows because I don't want to listen to the character's problems. I can't take anything else on. I just need to recover myself.

I might need another few days. I might need a few more months. 

Getting sick on top of a chronic illness is very challenging. Pneumonia is no joke. People often get hospitalized from it. People die from it. I wish I was hospitalized. I really wish I had a machine attached to me to help me breathe, a port for regular IVs to keep me stable, a vacuum to go into my lungs and suck it out... at the very least, having trained medical professionals there to help at a moment's notice. That would seriously have been very helpful. But no. I suffered through it from bed without much help since my husband was so busy. I very inefficiently coughed way too much, slept way too little, sweated too much (I was up to 103f fever and the fever lasted just over a week), and ate poorly. Why? Because I was afraid of the cost of seeing a doctor, I didn't want to go on their drugs, I didn't have the energy to explain all my medical issues to them (that they still won't understand because they've never been trained on my issues), and I honestly felt like I didn't care of I died.

And now the most help I've had for my recovery has been acupuncture, but due to the weather I've only been able to go once. Acupuncture helped get more out of my lungs than anything else has, and gave me the strength I needed to rest properly. I'm going back for another appointment in a few hours - hopefully before the blizzard begins!

All I'm trying to say in this blog is that it's critically necessary to be patient with people who are sick on top of having chronic illnesses.

Thank you. 

Laprascopic Surgery

Laparoscopy: putting a camera and lasers into your abdomen via your belly button to diagnose endometriosis and other organ issues.

It took me 5 years to finally agree to have it done, and in retrospect, I wish I just would have done it right away. That said, I think it took 5 years of trying to heal and improve through other methods to realize I just needed to get surgery. My periods did improve a lot through natural healing methods, but after 5 years I still had endometriosis to have removed. This is an expensive surgery that insurance might not cover for you, but I believe this is a surgery that you shouldn't put off if you are suffering from your periods.

A little background on me: Since I was 17 my periods have been living nightmares for me, some of them so horrendous that I'm fairly sure they gave me some mental trauma. I've had people roll their eyes at me when I've said this, but it's true: the trauma was real. I've been scared of each period as it comes, bracing myself for the extreme pain. I've had to plan my entire life around when my periods were due to start, and that hasn't always been easy because of their irregularity. The pain that came with the first day of my period was so extreme that taking 12 ibuprofen wasn't enough - I was counting carefully. Sometimes I had to knock myself out with Nyquil and sleep through the worst of it while wearing an adult diaper. 7-12 hours of laying in bed, screaming from the waves of pain that just moving a toe brought was trauma-inducing. Losing 7-8 ounces of blood on the first day alone was incredibly difficult to deal with. The pain and blood loss left me incredibly dizzy and sick in every possible way - imagine sitting on the toilet with extreme amounts of blood coming out of you while you're struggling to breathe and your vision is going in and out of being pure black. And then co-workers and past bosses have had the nerve to tell me I was just weak and should learn from other women who just deal with their periods.

I went to a gynecologist about 5 years ago who recommended having a laparoscopy done. She told me she was almost certain I had endometriosis, but needed to do the surgery to confirm it.  There is no other way to diagnose it. I didn't take her up on it at the time because my insurance wouldn't pay for it - my quality of life came down to insurance, yes. But I also started to see my Naturopathic doctor who told me he could probably improve my symptoms. He was right. It took a couple of years with his care to get enough relief, but he was able to reduce my flow from 7-8 ounces on the first day down to 7-8 ounces in 4-5 days time. The pain reduced about 50-75%. He made an herbal tincture for me that killed the remaining pain perfectly - it works a billion times better than any pain killer every did. So because what he was doing for me was helping over time, I didn't go back to my gynecologist.

But then about a year ago ovarian cysts started to give me pain throughout the whole month, and that pain has been growing harder and harder to deal with. I can't manage my periods without my tincture, which makes me very sleepy. I still can't go to work on the first day of my period - I couldn't even drive if I needed to. The problem is that even when the pain isn't that bad, I'm still fighting vertigo, diarrhea, air hunger, extreme fatigue and weakness, digestive issues, and depression on the days around my period. That is likely from POTS (Postural Orthostatic Tachycardia Syndrome.) I always assumed it was the period itself causing the problems. So when I went to the gynecologist a couple of months ago to finally have the surgery done to relieve the rest of my pain, I wasn't giving up on my natural healing methods, I just knew I needed an official diagnosis and more relief.

It took a couple of appointments and other testing done before my new doctor agreed to do the surgery, but she did agree that the laparoscopy was a reasonable next step.



My husband and I had to be at the hospital at 6:30 am for an 8:10 surgery time. I wasn't allowed to eat anything 8 hours prior, so as someone who fights hypoglycemia I was very thankful for a pre-breakfast surgery time. I was not asked to do a bowel prep, but I did it anyway. I am so glad that I did - if you're not asked to a bowel prep, just go to your local health food store and buy some magnesium citrate and drink it down the night before. You'll be thankful. I was asked to take a few showers with antibacterial soap, but I just used Dr. Bronner's tea tree bar soap (tea tree will kill anything). If you're MCS and cannot tolerate tea tree essential oil, I honestly think you'll be just fine with whatever soap you tolerate. I'm not in the habit of using tea tree unless I have to, but in small amounts I can tolerate it. They covered my belly in iodine before the surgery anyway. Yes, iodine, which was perfect for me.

I was not allowed to wear any jewelry, lotions, perfumes, etc. As it turned out, I didn't notice that any of my doctors or nurses smelling of perfume either. The only trouble I had with it was the scented bathroom soap, and I only used the bathroom once before the surgery to pee in a cup for a pregnancy test first, and I was able to use my own unscented soap that I brought with me. The bathroom still reeked of scented soap, and I was reacting and feeling unwell from it shortly before I went into shock. The shock wasn't just from the reaction, but it did contribute. I think that the hospital takes the operating room more seriously than any other outpatient service. So my MCS issues weren't a big deal for me personally until I had all the meds in me.

I waited with my husband in a pre-op area. I think it was obvious I was nervous because the nurse that was with me doing all the paperwork and official business with me on the computer asked another nurse to come stay with me. That nurse was amazing. She helped me get into this big gown full of pockets for hot or cold air to get hooked up to. She stayed and talked to me to help me stay calm, and she was the one to wheel me to the operating room. I went into shock while she was wheeling me - shaking, crying, shivering, hyperventilating... big adrenaline and blood sugar type crash. She made the decision to allow my husband to come with me to the operating bed, the place I was in before going into the operating room. I was still struggling while on the bed with shaking and breathing, but my husband was able to be there to help me. I talked to my gynecologist (who did the surgery) and the anesthesiologist there. My doctor is gentle and nice, radiates confidence, but isn't arrogant or dismissive of me at all. She had exactly the right attitude I needed in a doctor who was about to open me up, and made me feel at peace with having the surgery done.

They had read my cardiologist's report before hand and saw I was just diagnosed with POTS and put on the Metoprolol beta blocker. I told them that I wasn't comfortable with them giving me a beta blocker for the surgery since I hadn't tried the Metoprolol yet and didn't know if I would be reactive to it. They did give me beta blockers in my injections, though. What I'm not clear on is if they gave it to me preemptively, or if I was going into tachycardia and needed it. I wouldn't be one bit surprised if my heart rate was too high from reactions to the other meds - my MCS reactions sky rocket my heart rate. I was able to discuss my concerns with anesthesia with the doctor, and he listened well.

I remember being given a port for the IVs, but I don't remember being given the anesthesia. I woke up in the same place to hearing a doctor yelling at nurses. I heard, "You need to get your shit together! What if the patients saw you acting like this?" There was arguing for a while. I thought to myself, "Oh this is funny, I can't wait to share this with everyone." They probably assumed I wouldn't remember hearing that if they had known I was waking up, but I remember everything after waking up. Poor nurses.
I wasn't able to open my eyes very much at that point or move my body, but I was alert. It wasn't long before a nurse was helping me get into a wheel chair. I remember thinking it was so strange that only one nurse was needed to get me out of the bed into the wheel chair - that I was able to get up as if I didn't just have surgery. She wheeled me to a room where my husband was waiting for me, then we went into a post-op recovery area.

I felt great. I felt better than ever. No pain, no anxiety, no feelings. I was very relaxed. If that many pain killers can make me feel that good, what does that say about my day-to-day pain and anxiety?

Except that I could feel one thing: my throat. My throat was so incredibly dry, horse, and in pain. It was like they stuck sandpaper down it. What they actually did was put a breathing tube down my throat during the surgery. Part of the tube had cut the inside of my lip too, so I couldn't stop licking it. They gave me ice to suck on for my throat, and I ate applesauce and popsicles.

I went through one and a half IVs in that room, and I went though at least one during the surgery.  I couldn't feel that my bladder was very full and ready to burst. I was just numb. I just noticed an odd heaviness and questioned if I needed to go. The nurse had to walk me to the toilet. I was really weak.

My doctor came and told me that she did find scar tissue and endometriosis. She sent a sample of it to the lab, and burned the rest out. One of the spots of endo was on my ovary, so she couldn't remove it without damaging my ovary, but she did burn off what she was able to. She scraped at the scar tissue she found to loosen it up. The nurse and the doctor went over my care instructions for at home and how to take my pain killers. I was prescribed Percocet and prescription Ibuprofen. Not having taken pain killers for 5 years and remembering having trouble with them, I was so scared to start them. But I had no choice. They were necessary. More on this later.

I got dressed after peeing a bunch more, and they let me go home. I think we got home around 1:30 pm, so I was at the hospital for about 8 hours. I felt pretty good for a couple more hours, just laying in bed eating popsicles for my throat.




Note:

I've had this typed up and waiting to be finished for over a month. I didn't finish, but I just can't right now. So exhausted and my energy is going to more pressing issues. I can get into my recovery in another post, because that's about where I left off. :) 

Metaprolol Experience

In this post I explained that I was diagnosed with POTS and put on a beta blocker to manage it. I'll go into some detail on this post about what it did for me and to me.

I was prescribed Metoprolol Extended Release 25 mg. I was not allergic to any ingredients in this option, but the regular non-extended release version contained lactose. I don't know how a small amount of lactose in the pill would affect me, but I do not do well with dairy at all. The advantage of the extended release version is that I only take one pill a day, but the disadvantage is being unable to cut the pill in half if the dose is too high. I think I would have been better off with the regular version, taking a couple a day, because I think I would have responded better if I had been able to cut the pills in half and work my dosage up. In the end, however, my doctor and I decided it's not the right drug for me.

Beta Blockers lower your heart rate, so it made perfect sense to try it. What I didn't know at first was that it also lowers blood pressure. If you have low blood pressure then I'm warning you against Metoprolol.


I decided to take it at night since it makes me sleepy. The first night I took it I had vivid terrible nightmares. When I woke up I felt all the symptoms of low blood pressure: eye pressure, headache, weak, freezing cold, and out of breath. I took my blood pressure. I can't remember specifics, but I remember it was in the upper 80's over lower 50's. My heart rate wasn't any lower. Through the day my blood pressure ran low, but slowly improved until it was back to my average 100/60 in the evening.


The second night I didn't have the nightmares, but it started to make me feel slightly more depressed and darker than usual. I did wake up, again, with low blood pressure, and once again my heart rate wasn't any better. My toes were dark purple and icy most of the day. I was starting to feel even worse going from sitting or laying to standing. Normally I feel POTS symptoms about 50% of the time when I get up, but it was turning into 100% of the time with increased symptoms (mainly extra dizziness with bright light colors spinning around me longer than normal.)

By the 4th day my blood pressure wasn't quite as bad, but still around 92/55 most of the day (that was one measurement I have recorded.) My heart rate, however, was down to the 50's at rest. My average resting heart rate is 88, so that's a big drop for me. Upon standing it was going up to the 80's to 110 range. So even though my resting heart rate was lower, it didn't fix the POTS. By the 5th and 6th days the deep purple and ice cold in my toes had overtaken my feet and shins. By the 6th day my resting heart rate was back up into the 70's and 80's most of the time with a few periods of it being in the 50's. It wasn't consistent. That isn't so bad, but I was going into the 120's and 130's when standing up. The other issue is that my fibromyalgia was coming back in a big way. My leg muscles and shoulders were getting achy, tender, and felt like acid. I lost my ability to control the muscle pain.

I took it for 8 days total, and I never improved more than that. I asked my cardiologist his thoughts on this and he said it wasn't doing what it needed to, and the side effects were not worth it. So he told me to stop. He said I might be better off being untreated based on how I reacted to it. There are other options I could try, like Calcium Channel Blockers, but he didn't suggest it. He said because my heart itself isn't in danger and it's working well, I should be okay without treatment. I'm also not a fainter. If I were a fainter it might be important to try something else. But for me POTS is a cause of fatigue, pain, discomfort, and exercise intolerance. It's annoying and draining, but not damaging... we think. I'm not sure I'm ready to try the next thing anyway... exhausted from all the changes to my body!

Metoprolol was a teaching experience. Without it I feel fatigued all the time from being too revved up all the time. On it, I felt the same level of fatigue from not being able to rev up at all. It felt different. It might have been better for my body to be more calm on it, but it made it just as hard for me to function. I think I had less adrenaline to help me function while on it too.

So I'm going to do what I have been doing that seems to help: extra salt, electrolytes added in all water and tea I drink, licorice root as needed for low blood pressure, green tea as needed to cut down on fatigue (other sources of caffeine make me worse, but green tea does help), and going for walks as often as I can tolerate. I may want to try other prescriptions in the future, but I have a feeling I don't tolerate any prescriptions well due to my chemical sensitivities. I haven't had lucky on any so far for any condition...


Best part of getting off Metoprolol? My feet can feel the sun again and it feels good! They were so ice cold not even the sun would warm them up! They still turn purple from blood pooling, which is helped by elevating my feet, but not the dark purple and numbness that Metoprolol caused. 

Norovirus is No Joke

Here's the short version:

I got Norovirus and it lasted for 5 days. It ranked in the top 3 worst pain experiences of my life. I'm too drained to recover easily. My stomach and gut are not back to normal and are very picky about what food and in what amount and when I eat it. I'm emotionally dead and deeply depressed. I finally had my appointment with my new local primary care doctor since I need an MD on my record, and she's sending me to a gynecologist and a cardiologist.

...I feel like this is just leading to a repeat of 2013 all over again. Lots of money getting thrown at doctors who likely will just tell me I'm normal and it's all in my head. I wonder why I bother, then I remember my disability case, and I remember that I'm supposed to be hounding lawyers until someone takes my case. Yeah, well, give me some magic pill to return me to good health if you want me to try harder to get a lawyer. If I want to ever get government assistance then I need MDs, not NDs, to diagnose me. But it's the ND that actually helps me.

Am I being too honest if I say I either want to be able to live without all these health problems or just die? Does that make you uncomfortable? Sorry, my filters are full and can't filter anything else. It's all I can think about. I can't enjoy the things that normally make me happy. I'm pushing my friends away because I don't have any energy at all for them. I'm just blank. I'm emotionally dead. My body feels like an empty shell. There's no energy or life in me. Norovirus took what I had left. 2 days of vomiting, diarrhea, and horrid skin aching and tenderness. 2 more days of just diarrhea and skin pain, Another day of just diarrhea. Any fuel or qi or life energy that I had left is gone. I'm not suicidal, I just don't want to take part in anything in life. Any appointment, commitment, phone call, email... it's too demanding. Wants too much of me. I can feel a pool of anger and resentment somewhere in me, and if that's the only emotion my body will give me then I really need to stay away from people.

I'm going to a gynecologist because I can't stop bleeding in heavy amounts. It's been 2 months of bleeding almost every day. I tried some herbs from my acupuncturist to stop the bleeding. One of them did reduce the bleeding without side effects. The other seemed to stop the bleeding for a few days, but gave me such low blood pressure that I spent the whole day trying to keep my head upside down to manage the headache and painful blurry vision. I know I'm very blood deficient. She gave me herbs to boil and drink to improve my blood, but I haven't yet because of Easter taking over and then getting Norovirus. But seriously, puking my stomach and flushing my guts out when I'm already blood deficient? Why does my body choose to live through these things? Why does it hold on to life? And why don't doctors see that I'm suffering so severely that I'm not able to actually live any sort of life? It's mind blowing. My ND sees it. My acupuncturist sees it. My chiropractor doesn't question it. The neurologist I saw seemed to believe me, but he's so far away and I think he did what he can do within his specialty.

Trying to eat is a major problem. My stomach and gut are so sensitive that I have to figure out exactly the right thing to feed them, and then when I do I can only manage a couple of bites before I get pain and feeling overly full. Yesterday eating a baked sweet potato with just olive oil and salt worked. Today sweet potato is cramping my stomach. Chicken broth the super soft canned chicken is working consistently, but only until my stomach can't take more liquid. It's being just as picky about water. I feel dehydrated, but water feels like a bowling ball in my stomach. Last night I wasn't able to eat for 5 hours before it was bedtime. I knew I'd get pain from hunger if I didn't eat, so I tried to eat some very soft non-greasy sausage. I managed about 3 bites before I got major pain in my stomach. My gut was so inflamed it was giving me a horrid headache. I had to just go to sleep and sleep it off. Enzymes are helping to a certain point. I know that if I could turn my digestive system back on that I might actually be able to get some energy again... I feel like I'm gaining a tiny bit back everyday, but it's not enough. I wouldn't be able to type this right now if not for the green tea I've been sipping on all morning and the tiny bit of energy I'm getting back each day.

I'm going to attempt to go to work today for 3 hours. I'm lucky that I was only scheduled for a 3 hour shift today before I knew this was going to happen. I've missed 3 or 4 shifts already, so I need to try.

Unrest Documentary by Jennifer Brea

Jennifer Brea made a documentary about her illness, but it isn't just her illness. It's an illness millions of us have. The documentary is "Unrest," and it's now streaming on PBS and Netflix. "Unrest" is about Chronic Fatigue Syndrome. 

My husband and I were able to watch it last night since Netflix now has it. PBS aired it, but not locally, so we had to wait for Netflix. If you don't have access to either streaming service, you can pay to rent it on Amazon and other streaming sites.

"Unrest" is an expansion of her powerful Ted Talk:




Many of you might prefer her Ted Talk, which has essentially the same information as in the movie, simply because the movie is much more difficult to watch. "Unrest" makes you watch people suffering with CFS/ME up close and personal. It reveals the reality of what being bedridden from fatigue is really like. It's not easy to watch, even as someone who has been bedridden from CFS/ME. I know the illness from the inside, having it myself, but watching it from the outside was still difficult for me. Her Ted Talk has the science and the facts in a more condensed format too, for those who want to learn, but don't want to commit to watching the full documentary.

As someone with Chronic Fatigue Syndrome and knows other people with it, I would like to strongly encourage you all to get everyone you know to watch "Unrest." What I hope the movie accomplishes:

1. Breaks down stereotypes about the illness. We are not lazy, we are not just tired, we are not just being selfish. With this illness, willpower doesn't work. We can't just "buck up" and push through. It doesn't work. "Tired" is normal. Chronic fatigue is not. They are not the same thing.

2. Encourages the funding of research on CFS/ME. As she explains, CFS/ ME receives the least funding of all major debilitating illnesses, and therefore very little progress is being made. As it is now, most doctors I've talked to have told me I just need to exercise more or go see a psychologist. The problem is that research that has been done shows that exercise can be detrimental to CFS patients, making their condition much worse. I know this is true from personal experience. And the illness is not a psychiatric one - that's what doctors say when they don't know how to treat you. I would so much rather hear, "I don't know."

3. Helps family members and friends to come to an understanding of what their CFS loved one is going through. It's so difficult to explain ourselves, mostly because people don't listen with the intent of understanding. Most people in my life try to tell me what to do to get better, but very few have asked me about my point of view with the illness. I hope this movie breaks assumptions and encourages real dialog between the patients and friends and family. As it is, it takes so much energy to communicate, and so much recovery time from speaking. It's extremely discouraging to have our energy wasted on words that no one truly listens to.

Please watch it. Help us to get help. Start the conversation that will open up people's minds to the reality of Chronic Fatigue Syndrome.


I would like to share a few personal thoughts:

"Unrest" serves as a great introduction to CFS/ME. I really appreciate the overview it gives. But that's just it: it's an overview of people who are bedridden from CFS. There is so much more to learn about it.

Many of us with CFS, like myself, are not bedridden. At least, I'm not anymore - not most of the time. Some days I am bedridden, but I'm mostly chair-bound these days. Not an office chair, a comfy reclining home chair. Yes, sitting up in a chair is a big improvement over laying down in bed. Back in 2013 I was bedridden for months, and then stuck in bed more than 50% of the time over a year and a half. If I didn't get lucky with finding my doctor I may still be bedridden. I got very lucky with finding a doctor who could help me... but he's not local. I fly half way across the country to see him, because all the local specialists I went to told me I was a mental patient and a hypochondriac. One of them did diagnose me with chronic fatigue syndrome after 6 months of going back to her complaining about the extreme fatigue. She also did the Tender Point Test and diagnosed me with fibromyalgia. She also diagnosed me with anxiety and depression after I came back to her to say that the Cymbalta she put me on was amplifying my pain tenfold and made me suicidal. Without running tests, she sent me to a psychologist. She didn't even send me to the ER after saying I was suicidal.  Most CFS patients are not lucky like me. They haven't found a doctor who can help them. They're stuck with doctors like I first went to, doctors that don't know what they're doing. Doctors with no training in Chronic Fatigue Syndrome.

My doctor is a Naturopathic Doctor, and a rather unique one (HumanNatureNaturalHealth.com) - I've learned that many people automatically dismiss anything a Naturopathic doctor has to say, so I'm careful who I reveal this to now. Someone even told me I'm hurting myself just because I'm seeing an ND and not MDs... as if I didn't already get worse under the care of MDs. But the fact of the matter is, no matter what your opinion on naturopathic doctors is, he's the only doctor who's made progress with me. When conventional medicine fails, I hope you can understand why we seek out the unconventional for help. Please don't dismiss what works. I'm not dismissing MDs either - they all have their specialties and play important roles in health care. They've helped me with other conditions, and I am very grateful for some MDs I've seen in my life. I'm about to go to another MD, a cardiologist. But when it comes to CFS, I couldn't find help from MDs.

Those of us who can work part-time were not featured in this film. I respect that. I understand why she didn't share our part of the story. "Unrest" needed to be convincing by showing the worst of the illness, and I was at that "worst" point for a while myself. I use the word "worst" lightly here, because I don't compare people's suffering. Suffering is suffering, no matter the level of it.

But I also think it's very important that people understand how hard we CFS patients are trying to keep living our lives. I work 12-15 hours a week. Some weeks that's too much for me. Other weeks, as long as I supplement correctly, I can handle a few more hours. Because I'm able to work part time, I find myself in this grey area of illness. Social Security Disability isn't taking me seriously, even though I can't work enough to pay my bills. Many of my friends and professional connections don't take me seriously, and I'm thankful for those who do take me seriously. They see me at my best: when I'm geared up for work, having saved my energy to spend during those hours. They don't see me when I'm back at home laying on the couch struggling to get up to go to the bathroom. They don't see me when I have to crawl up the stairs because I don't have the strength to walk up them. They don't see me when I'm stuck in bed until noon because my body won't wake up enough for me to get up, even though my eyes are open. I call in sick when I'm that weak, and sometimes I get in trouble for calling in sick - how can I be useful and reliable to the company when I call in sick? I have to carefully reserve calling in sick only on days when I'm doing badly enough that I can't drive. If I can drive, I can work, even if it's taking all my strength just to stand up. I hate this, because I believe in being an effective employee - why accept money for doing a poor job? I want to be able to always do my best at work. If I can't drive, then I'm sick enough to call in. I hide the rest of my reality from them, not entirely by choice, but more due to the nature of my illness. I also know how to supplement in order to boost my adrenaline enough to be able to keep working if I don't have the energy to make it, and my co-workers see this, so they know I have the ability to keep going sometimes... but when I do this, I pay very hard for it later. I need a lot of recovery time, and that recovery time can be painful to endure. It can mean I can't come back to work the next day. I'm typically scheduled for 4 hour shifts every other day, sometimes with 2 days between shifts. This works really well for me. Other people with CFS are not lucky enough to find an employer willing to schedule them like this... I doubt I could find another job in this town that would work with me this well. I can't express just how grateful I am for my job, and that's why I haven't quit, even when I've felt to sick to keep working.

And I know people with CFS/ME who manage to work full time, but they don't perform very well at their jobs. They're giving all they have just to be able to afford their home and food, but they make lots of mistakes at work and really struggle to maintain a professional image. Once they get home they can't clean, cook, or take care of personal business. They're drained. Their stories were not told either. I would love to see a follow up documentary to cover the rest of us who are not 100% bedridden.

Thank you for reading. Please share this along with telling people to watch "Unrest." Let's be heard. Let's get funding for medical research on CFS/ME. Let's educate doctors. Let's educate our employers, friends, and family. Let's connect with each other and bring more meaning and value to our sick lives.

If you would like to help take action, please sign the petition to get research funded:
https://www.unrest.film/nih-petition

December 2017 Doctor Vists and Tests Part 1

I have a lot to explain, and for the first time in months I might have what it takes to sit down and type it out. I finally took my supplements this morning, and they're helping! :)

For a little over a year there has been this lingering question mark over my head asking if I have Postural Orthostatic Tachycardia Syndrome, or POTS for short, a form of Dysautonomia. I had a couple medical practitioners say that they suspected POTS. POTS is defined as your pulse going up at least 30 bpm when you stand up then sustaining a high pulse for a little while (but the length of sustaining is what confuses me.)

I got myself a pulse oxygen meter that clips onto my finger in order to see what happens to my pulse when I stand up. About half of the time my pulse does shoot up at least 30 bpm, often way more than that. Sometimes it stays that high for a minute or two, but normally what happens is my pulse shoots up, then goes down, then goes up again, then goes down again, then goes up again... it's a roller coaster. I took some videos of this happening and sent them to a Neurologist in New Hampshire who is an expert in Dysautonomia that my primary doctor referred me to. He took me on as a patient, which was a huge relief to me since he's very difficult to get into.

Why not see someone locally in North Dakota? Because POTS isn't well understood, and it takes a doctor with training in dysautonomia to be able to diagnose it. There isn't anyone in ND except for one pediatric doctor that diagnoses, and I'm not a child. There doesn't even appear to be a Tilt Table in ND. If I went through the local hospital for a referral they would have sent me to Mayo in Rochester, MN. It's an 8 hour drive from here, and very expensive. Too expensive compared to flying somewhere to see a highly rated dysautonomia specialist.

On the trip to NH I also scheduled a Tilt Table Test, a Echocardiogram, Lyme Disease testing, a visit with the Neurologist, and a visit with my primary doctor (my Naturopathic doctor.) It was a very full trip. In preparation for the visits I had to be off all my supplements for a few weeks prior. I posted a bit about that experience, but in short, I didn't do quite as badly as I expected without the supplements, but I did get worse. High adrenaline and crashing during the day, high adrenaline and interrupted poor sleep at night. My digestion became poor and my joints and muscles ached. I ended up gaining between 10-15 lbs (lots of fluctuation day-to-day.) My mood deteriorated rapidly, and my periods became irregular. My stress level was through the roof and I couldn't control it, even while relaxing.

On the first day of the trip I went to Elliot Cardiology in Manchester, NH. I started with the Tilt Table Test. I had to fast at least 4 hours before the test to make sure I didn't vomit during the test and end up choking on it. As someone who has to eat every 2 hours to stay strong enough to function, that was hard, and then the test took about an hour. After the test my blood sugar was 72, which was barely above hypoglycemic, so I was actually impressed with my body that it didn't get hypoglycemic after all that, but I was very shaky.

The test was... not really what I was expecting. I was strapped down to the bed. It took 3 nurses to find a vein in my arm to put an IV into - the IV was to raise my blood volume back up with saline in case my blood pressure dropped too low. They almost gave up on using my arms for the IV, but the last nurse they called in wasn't afraid to dig a little deeper and she managed to get the needle into my vein. They hooked me up to an EKG machine, and took my blood pressure. I was expecting that they would let me lay calmly for a while to get my body down to baseline, but next thing I knew, I was being tilted upright on the bed. I definitely was feeling nervous and high strung, definitely not at my baseline before they tilted me. I started to get upset because I didn't feel like they were doing the test right, but the tilting made me feel so weak that all I could do was focus on surviving the tilt. In that moment I understood why POTS patients say the TTT can be really painful and difficult to endure. During the tilt I felt this deep pressure moving downward in my body, my vision narrowed towards black, and I started crying. Tons of tears just poured out and they had to give me tissues. It was horrible - but a feeling I was familiar with. I've felt like that before when standing up too quickly, but this was the most extreme. I'm not a fainter, my body always fights the feelings like I'm about to faint. If I was a fainter, that's when I would have fainted and I would have passed that test criteria. I couldn't communicate well, Thoughts were not working well, so when the nurses asked how I was doing, I just got out the words "weak, I can't stop crying." But then I was standing there strapped to this bed at an 80º tilt. Within about 5 minutes I felt better. My body was recovering. I didn't understand what to do - I felt well supported by this bed, so my body wasn't working to stay upright. I had no idea if I was supposed to relax all my muscles and stop supporting myself or if I was to stay there, legs locked upright. I had waves of hot flashes, waves of weakness, but never fainted. One nurse told me, "You're not quite normal," and I never had a chance to ask her what the meant. After the test she had to run before I could question her.

After 30 minutes they laid me back down flat. This is the part that's as bad as the tilt itself. I was able to stand up, but was very weak and shaky. I was trembling. I talked to the nurses for about 30 seconds, then I tried to take a step. I couldn't. My leg muscles gave out and I had to fall back down on the bed. I was crying hard again, shaking almost violently, freezing cold, and felt so weak. The nurses argued a bit about if it was an anxiety attack, hypoglycemia, or adrenal issues. The one nurse was sure it was adrenal, but they're not allowed to diagnose. That's when they took my blood sugar and found I was borderline hypoglycemic. On this note, I was disappointed that they did not do the version of the TTT in which they infused adrenaline through an IV if I didn't faint, and then do blood labs to see how my adrenals react to the IV. This part of the test often makes people faint, and then they know the syncope is from adrenal issues. I know I have adrenal issues, so I wanted that part of the test done and didn't get it.

I couldn't walk on my own, so they put me in a wheelchair and delivered me to the echocardiogram room. I needed the echo to check on the status of my Pulmonary Stenosis, which I've had since birth and it never went away. It's still there. That's about all I learned from the test. I'm thinking of sending all my past echos to a cardiologist there and having them do some comparisons.

That was the end of the first day of testing. I was weak and low energy the rest of the day.

The next day I saw my Neurologist at Dartmouth-Hitchcock Medical Center. But let me back up a bit: I almost didn't a couple of times. I got a phone call from his office the day before our flight out there saying that he wanted to cancel my appointment because the Autonomic Nervous System testing equipment broke and he couldn't test me. I had to beg to keep the appointment, even just a consult, and they agreed because I was traveling. The day of, I had two major strikes against me going: I started my period that day (I have to roll my eyes at my body choosing the worst times), and the weather was horrific. 3 inches of snow in a few hours time, icy roads, and near whiteout conditions. An hour and 20 min drive took us 2 hours, and I ended up getting there 10 minutes late. 5 more minutes and he wouldn't have seen me. Or so the receptionist said, but the doctor was forgiving and spent a good amount of time with me. I didn't have time to go to the bathroom before seeing him, so I was cramping badly and was uncomfortable. My blood pressure was 120 something over 63 and my pulse was over 100, if I remember correctly, which showed just how stressed out I was about my bathroom needs, getting to see this doctor finally, and being so rushed in bad weather to get there.

He sat me down and let me talk - he had me tell him my history and all my symptoms. He gave me a good amount of time and really listened, which blew my mind. He was amazing. He took me seriously, didn't try brushing off anything I said. He even knew about the damage vitamin b6 toxicity can do and understood what I went through with my nerve pain. He had me to do some nerve conduction testing, which turned out normal. He also showed me the results of the TTT:


I went up over 30 bpm, the criteria for POTS. But it doesn't say if it was sustained. It could also be POTS symptoms caused by something else. So he needs more information.We decided that since he wasn't able to do the autonomic nervous system testing that he would have me wear a heart monitor for 14 days - a Zio XT Patch...


...Which meant not being able to go back on my supplements. My doctor and I agreed that we need to measure my heart without the medical aids to show how I am without support. Today marked 14 days, so I ripped the monitor off and took a hot shower and my supplements. The patch was itchy the whole time and it left me this pretty rash:


I'll tell the rest of the story in Part 2, as I have to go to work now. :)

Sugar = Depression

People don't want to talk about depression and suicide. I don't blame them. I always feel so powerless when my friends bring it up to me. I know trying to cheer them up will just push them away. I know that when I'm feeling depressed I'm too zoned out to even talk about it. It's such a tough issue.

I'm currently wearing a heart monitor, a Zio XT Patch. I have a lot to write about to explain what's going on it, but I don't have the energy right now. To make my point, I do need to explain that I'm relaxing a little (not a lot) on my strict diet because we want the heart monitor to record what I'm like without all the medical aids, including my diet.

This has meant I've let myself eat sugar. I bought the SO Delicious chocolate covered coconut milk ice cream bars because the only thing in them that's not allowed on my diet is sugar. They were a safe sugary option for me. They're super good! So I ate too many over the last week. Each time I eat one, I'm noticing what happens a few hours later: I get very depressed. Not sad. Just mentally everything goes black and the only emotion that comes through is a mild current of anger. The "everything is stupid" type of anger, like I'm a teenager again. It comes along with a headache. It's awful. I lose sight of myself in this blackness. Then eventually it turns into hunger and total weakness - probably low blood sugar. I'm saying this now because the feeling is starting again... because I ate the ice cream a few hours ago. It's hitting me.

I still get depressed without the sugar, but it's really blowing my mind that sugar has this profound of an effect on me. It has a direct correlation with serious depression episodes. I'm not entirely sure what to do to get out of it - the past several days this week with the sugar depression I just had to go to sleep and sleep it off. Of course sleep doesn't come easily. I'm not supposed to take any sleep aids either, but I've had to take some magnesium to calm the anxiety in my body from the sugar so it was possible to sleep. I'm afraid of how I'd be with both sugar and a lack of sleep.

I also ate a muffin made from flax and oats, no other grains. The oats alone were enough to know what happens to me when I eat grains: fibromyalgia flare. It hurt. My skin, especially  my legs, got really tender to the touch. Waves of achiness went through my muscles. And I hate to say it, but it's true... taking the Eucharist has Mass has done the same thing to a much lesser degree. Grains are truly my enemy.

But why did I also mention suicide? Because I just binged on an anime on Crunchyroll called "Orange." If you're feeling depressed, go watch it. It's powerful. It's about a girl who sends a letter to her past self to coach her through her social anxiety issues in order to get her to save the life of a friend who will end up committing suicide. She has to overcome her own social fears to be strong for him, and he has to want her help - all the while he hides his deep depression from her. I won't spoil anything. It was really hard to watch, but also really inspiring and beautiful. It had a lot to say about the value of good communication skills.

Back to my heart monitor...
It hurts. All my doctor's supplements for me really have done a lot of good for me. I've been off of them for a month now, maybe longer? I'm not clear on the time frame at the moment. I've gained 10-15 pounds (the scale is different each day), I'm weak and totally drained, adrenaline takes over when I need to work and the adrenaline feels gross and dominating, I can't sleep well, my hair stopped growing much, bruises are taking weeks to heal, I'm dizzy really often, vertigo almost daily, my gut is screaming at me often, my heart is palpating and fluttering too often, I'm often panting for air, I'm dehydrated and can't seem to drink enough water... I'm going downhill fast. I'm so looking forward to going back on my supplements. They're a hassle to take. They're expensive. But they're all I've got that's working. I function so much better on them. Not perfectly well, not even close, but so much better.

I'll write about everything else later.

Upcoming Medical Appointments and Symptom List

It upsets me that I have so much I really want to write about in this blog, but I just can't find the energy. I've been very surprised and humbled by how many views my posts are getting. Thank you so much for the support, and I very much hope that what I'm sharing helps you!

I just can't find the energy to reply to people I really care about on Facebook messenger. I'm too brain dead. I rarely watch TV on my own because I'd rather be doing something, and so video games help me relax while being interactive, but lately I've found myself watching more and more because it allows me to just lay on the couch and zone out. My games are calling to me to be played, but I know I can't think well enough to enjoy them. So please understand that I'm not ignoring anyone - I'm just trying to make it day by day, waiting for a time when I feel up to replying to messages or writing a blog post. I'm not even up to blogging right now, but people are asking about me, so I wanted to explain.

I'm tapering off all my pills again for some doctor appointments next month. I'm going to see a Cardiologist for a Tilt Table test to officially test for POTS and an Echocardiogram to monitor my Pulmonary Stenosis (heart murmur I was born with that never "went away.") Then I'm seeing a Neurologist for POTS and Chronic Fatigue, and he's going to run a nerve conduction test. Then I'm going to see my Naturopathic doctor (Dr. Bier at HumanNatureNaturalHealth.com) for an exam and treatments. I have to be at my worst for the Tilt Table test, which means I need to taper off my pills that help me manage my day-to-day life. It also means I need to stop seeing the Chiropractor since adjustments do help my symptoms subside for a little while.

Needless to say, this is leaving me exhausted: the stress of planning the trip to New Hampshire to see these doctors alone is too much stress. Finding an AirBNB that is fragrance-free, finding plane tickets, figuring out how to pack light for a trip in the winter... my parents have done most of the work and it's still too much stress for me. Oh, and how could I forget how difficult and time consuming it was to get the appointments scheduled? I felt bad for how much work I put my doctor through to get me these appointments. Now I have to call Disability to move my hearing, which is going to be a giant headache... and I honestly haven't had it in me to make the phone call yet. My appointments only worked out on the day that my hearing is scheduled for. I'm planning on making that phone call after my tea kicks in. Or why couldn't I just do it over Skype? My hearing is set to be a teleconference over a TV anyway...

In the midst of all this, the motor and pump on our dishwasher broke, and it was out of commission for almost 2 weeks. Thankfully the warranty covered the repair!

I'm also trying to manage at work through all of this - my goal has been to not lose any shifts. This is challenging. As long as my matcha powder in my water keeps giving me the strength to work, I can work. When the caffeine isn't enough, I can't do it. And I'm getting more and more vertigo without taking my b12. I took one b12 the other day because the vertigo was too strong for me to be able to drive myself to work. The b12 killed the vertigo - it worked. But I'm not supposed to be taking it. So I'm getting really nervous about working, but I can't afford not to. I have to save ALL of my strength and energy for work, which means chores at home are not getting done. My mom was really helpful and very nice and came to stay with us twice so she could do chores for me. My husband works so much that he shouldn't have to do any, and I don't want him to lose his health from overworking.

I'm really struggling - if only I stopped having things I had to do. If work was my only obligation I could make it. But things I have to do keep coming on, one thing after the other. Why can't I just rest? Why is everything full of phone calls and paperwork? Every day I have to accomplish SOMETHING... it's always SOMETHING. I'm not well enough to do all of this. I wish I had a disability lawyer hired to handle it all for me... but the work of getting a lawyer is way too overwhelming. Even if I get diagnosed, I don't think I'll win disability. North Dakota doesn't like to give it to people under age 50 because, and I quote, "Young people are resilient." You have no idea how angry this makes me. When I finally figure out how to recover and improve my health I'm going to fight this notion in our local government and strive to educate our judges. If I was resilient then I wouldn't have a health problem worth asking for disability over now would I? I'm asking for disability BECAUSE I'm not NOT resilient enough. And that's not my fault. I didn't choose to be this sick.

I'm honestly tempted to drop my case entirely, move to another state, and try again there. North Dakota is a difficult place to live if you have medical needs, and not just because of the rough extreme weather. The weather alone makes it difficult, and healthy people just don't understand that. When you're very sensitive to pressure changes, temperature changes, and extreme temperatures, but you also have to deal with shoveling and driving in sometimes large amounts of snow and ice... it's difficult. You have to be a resilient and rugged person to live here. I used to be. But it takes energy to be, energy I no longer have. I get so much crap from people here when I get upset over several inches or more of snow - they say things like, "Suck it up, Buttercup!" or "You'll get used to it." or "The rest of us deal with it, so you can too." There was a time when I was used to it and could handle it, but dealing with it takes energy. They all have the energy, and they don't know what it's like to not have the energy. It's very insulting to me to hear things like this because I used to take pride in being able to handle the rough situations. I used to not get anxiety over a little extra hardship. They didn't know me back then, when I was healthy and could take on the world. Back when a challenge was just an opportunity to succeed. I can't think that way anymore without getting sicker.




I've been getting asked what my symptoms are that have led me to getting these tests done. Here's a non-comprehensive list:

- Dizzy and short of breath when standing up. I'll see colors spinning all around me for several seconds before things come back into focus.

- Heart pounds so hard that it makes my teeth chatter with each beat. Sometimes it feels like my heart will pop out of my neck.

- Heart palpitations, especially when laying down.

- When I measure my heart rate from laying or sitting to standing up, it often (but not always) goes up 40 or more beats per minute. Sometimes it doesn't change at all, despite feeling very weak. It also jumps all over the place when I'm laying still - it's jumped around 30 bpm when I was laying perfectly still except for breathing. It would go up and down and up and down within 30 bpm.

- Normal blood pressure is typically about 100/60, but have been down to 90/50 frequently enough. Licorice does raise it back up temporarily. After exercising my systolic tends to rise a lot, but diastolic doesn't change much.

- Sharp shooting pains in my chest. Sometimes my whole chest will feel sore like I worked out the muscles too hard.

- Vertigo that comes and goes.

- Blurred vision or very tired vision, making it so that I end up squinting when trying to keep eye contact with someone

- Constant neck and shoulder tension, sometimes so tense that it gives me an earache or toothache. I get regular muscle work done and it's not enough.

- Headache at the top of my neck that comes and goes.

- Tinnitus in my ears that frequently changes in terms of severity

- Periods of derelization and depersonalization, where reality feels like a dream that I'm not actively involved in. Like I'm viewing reality on a TV and I'm not actually in it, but have to act like I am in it... because I am.

- Adrenaline rushes and crashes. I can shake and run around like a crazy person during the adrenaline rushes, and when I crash I crash so hard that I quite honestly can't get up. I often wake up with these adrenaline rushes in the middle of the night. Very similar to anxiety attacks, but it's not anxiety.

- Legs and arms can suddenly feel like jello. They can lose strength and feel wobbly.

- Never ending bloating issues, with sharp stabbing gut pains.

- Icy cold arms and legs while my torso is sweating as though it's in a sauna.

- Sweating when I feel cold, or being freezing cold when others are comfortable in t-shirts.

- Inability to determine if temperature is safe, like when I'm doing the dishes or taking a bath I can pour water that's way too hot and not realize I'm burning until my heart rate skyrockets, my skin is bright red, and I'm sweating like crazy. Other times the water will feel way too hot and I'll sweat like crazy when it's actually colder than I normally like it.

- Pale flushed skin, sometimes associated with my skin being very tender to touch, the way skin feels when you have the flu.

- I never feel hydrated, even when I drink so much electrolyte water that my stomach wants to vomit from being over filled with water. I'm always feeling dry. Sometimes I have a problem of needing to go to the bathroom every 5 minutes, other times I'm wondering why I can't go to the bathroom more often when I feel like I'm flooding myself.

- Energy so low that it can be exhausting to just grill a steak for myself.

- Energy so low that it's difficult to hold a conversation with someone because I can't focus on listening or forming replies.

- Slurring my speech and/ or stuttering.

- Joint pain that comes and goes

- Falling asleep is really very extremely difficult, even when I'm exhausted.

- Sleep is not restful. I either wake up feeling high adrenaline that gets me moving quickly, and I crash very hard once I eat breakfast, or I take until 11 or noon to get out of bed because I'm feeling so incredibly tired.

- My tongue sometimes swells up so much it doesn't fit in my teeth.

- I can't sit with my feet on the floor without getting overly tired and weak, so I sit on chairs with them curled up towards my chest.

- I can't lay still long without getting fidgety, my body needing to move.

- I can't just sit and talk to someone over tea. I HAVE to be doing something, even if it's just playing with something in my hands, but if you want to talk to me I should be doing the dishes or cleaning something while we're talking. If I'm not moving, I crash hard and can't focus. But if I move too much I get exhausted and need to go lay down where it's quiet. So in other words, being social is draining. I like the idea of having friends, but not always the reality of spending time with friends.

- Reactive to fragrances and other synthetics, meaning: widespread muscle pain, gut cramping, heart burn, vision loss, emotional instability issues, headaches, sinus aches (I got a sinus infection from going into a very smelly Staples once), heart pounding and palpations, rashes...

- Very reactive to foods, making it so I can't cheat on my diet without paying hard for it. Hives, rashes, adrenaline surge, nervous ticks, severe anger, stomach and gut pain, very high painful heart rate, bowel and bladder control issues, muscle pain...

- Mold is my worst enemy. It his me harder than anything else. Typically with nose bleeds, chest tightness, emotional instability to the extreme, unable to breath deeply enough, widespread pain, a major sense of fear and dread washes over me...

- ALL of my symptoms get MUCH worse during PMS and my period. My periods are very very heavy and painful. Very difficult to manage.

- I can't have a slightly confrontational talk with someone without shivering and sweating, and it feels like helium fills up my head. I avoid confrontation in person. If I has to be done I prefer to say most of it through text (email or whatever) and then finish talking about it in person when the shock is over.


Here's some video evidence of my heart rate issues. I uploaded my video to youtube and would rather link to it than embed it since blogger gives me too many issues with embedding videos:
https://www.youtube.com/watch?v=L5uUA-Qydps


...I'm sure I'm forgetting some important symptoms, but this should give you a pretty good idea of what it's like to be me. My supplements help most of these symptoms to be mild and manageable as long as I don't over tax myself, but I'm also paying about $600/ month for them. They're working much better than anything else I've tried, but I've stopped improving and they're just maintaining me.

I need to have an MD determine if I have POTS or something else, because I need to be able to either accept that I can't improve more than this or that I can try something else to improve. I can't plan my life out around the not knowing if I can improve or not. And unfortunately, only an MD has the credentials to make that determination. No employer or assistance programs will accept anything other than the right type of MD's diagnosis. I'm not going because my Naturopathic doctor isn't helping (he's been the most helpful person I've ever worked with), I'm going because I need to go the conventional accepted route to get what I need to manage life.

And it's oh so stressful.