Value of Life vs Medical Costs

I'm drinking Numi's Gunpowder Green Tea with Vital Protein's Coconut Collagen Creamer and Redmond Real Salt and doing some reflecting before heading to my post-operation appointment with my gynecologist.

What is the monetary value of quality of life for a person with chronic illness who lives in a first world country with access to excellent doctors? Is it worth paying $14,000 for a medical surgery that might give a ton of pain relief, may result in fewer sick days at work, possibly improve fertility, and has potential to make a person feel human again? $14,000 could buy a year of college, a good reliable car for the long-term, a down payment on a small starter home, or a new roof for your home that will last long-term. What if I told you this surgery might only benefit the person for a couple of years at a time? Is short term quality of life (that isn't guaranteed) worth $14,000, when that money could buy long term services or possessions that also give quality of life?

Yes, my laprascopic surgery for endometriosis and my cardiology visit added up to $14,000. That's before my uninsured discount and my cost-sharing program benefits. My next step, after I wake up and am thinking clearly enough, is to make some phone calls about this bill.

In 2 years I can give an answer to this question, because I've been told people with endometriosis can need surgery as often as every 2 years. It's too soon for me to say if it's benefited me at all yet, given the fact that I'm still healing and my period hasn't yet come. The problem is, I wasn't aware that I was gambling with this much money when I agreed to the surgery. I was told that surgery was around $2,000. That turned out to be true. What I wasn't told was that I would pay $750 for each of the 3 anesthesia treatments I needed during the surgery, $7,000 just to be in the operating room, and lots of other charges for the staff that helped me in different parts of the hospital. If I dug deeper I'm sure I'll find the charges for the multiple IVs I needed, the time I spent in the recovery room, etc. Had I known the cost before surgery, would I have opted to do it? Probably, yes. It's a gamble, a bigger one than I anticipated, but I believe one worth taking.

The older I get, the less confident I am. Endometriosis has definitely been holding me back from living my life. I didn't want to apply for certain jobs because I knew I couldn't get away with calling in sick for my period in that position. I have had to fight some bosses over my needs around my period for years, and this has lost me the chance to get scheduled for better shifts or in better positions. And due to all of my health issues, I've never been able to focus on a career. I'm 30 with a college degree and I'm still doing shift work. It's not below me. I have a lot of respect for us shift workers. I'm paid well, I like my job, I like my co-workers and boss. I'm not complaining. But if not for endometriosis and my other health issues, would I have a career going by now? And given the fact that I don't make a salary, am I worth a $14,000 surgery?

I received my GED at age 16, married at age 19, and graduated college at 20. I was set up so well for a life with a good career and children. 10 years later, none of that has happened. My husband and I are happy together, but we're both very stressed by money, careers, health issues, and living within our needs. His career is very difficult because it's facing budget cuts at every turn, and his Master's degree isn't enough, but a doctorate doesn't guarantee a job. So am I worth a $14,000 surgery when we have these huge struggles? Would I be financially better off not getting medical treatment at all, and therefore not working? I could save money by just being disabled at home, not contributing to the work force. But I would be miserable. Is being miserable financially smarter, and could it lead my husband to more happiness if he didn't have to work as hard to afford me, someone who can't work much?

Don't misinterpret this post -

I'm not degrading myself. I'm not putting myself down. I believe I made the right choice. If I were evaluating another person in my situation, I would say that we each only get one life to live and all life is equal. Everyone deserves to live life in the healthiest way they can so that they can participate in life the most fully. I might have self esteem and confidence issues, but I know my value is the same as any other person. I carefully considered the pros and cons of this surgery over years. I've talked to countless people who have had it done. I've discussed with multiple doctors. It was a carefully made decision.

But what upsets me isn't that I have to spend this kind of my money for my health, it's that many people simply cannot afford the surgery or treatment and have no choice but to suffer. Why do I get to have the surgery to help me when others might suffer worse than me and can't have the surgery? I accept that the medial system is the way it is in the USA - I am all for improving it, but I can't afford the stress to worry about it. So I'm not. It simply is what it is, and until something can be done to improve it, I just accept what it is. I'm thankful for the good the medical system can do me, and my doctors and all the staff and nurses were excellent and I really appreciate all they did for me. But in the end, what makes me special?

Just some of my thoughts, but I hope my experience helps some of you make the right decision for you. After this Post-Op appointment I'll write about the surgery experience itself. 

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. 

Surgery and Diagnoses... It's Official!

In the past few weeks I was officially diagnosed with POTS, Inappropriate Sinus Tachycardia, ovarian cysts, and Endometriosis. It only took 5 years to get medical proof that I'm suffering, but I have it.

Here's the thing: POTS, Endometriosis, and Mast Cell Activation Disorder (MCAD) tend to go hand-in-hand. I haven't tried seeing a doctor for MCAD, but I have obvious chemical sensitivities that my Naturopathic Doctor helped me figure out. It could easily be MCAD - in fact, given the fact that I have POTS and Endo too, it probably is. I'm uncertain at this point in time if there's any point in me getting my chemical sensitivities diagnosed as MCAD by an MD.

The POTS diagnosis story:

If you follow my blog then you know that last December I saw Dr. Jeffery Cohen, a neurologist in New Hampshire to have some autonomic testing done to rule POTS out. The testing equipment broke, however, and he tried to cancel the appointment on me the day before my flight out there. He was willing to see me and look at other test results, at least. I went to cardiology clinic first and had a Tilt Table Test performed and an Echocardiogram. I did not faint on the tilt table, so the nurses said the test was negative, but Dr. Cohen pointed out that my heart rate did go up over 30 bpm (the requirement for POTS). He put me on a Zio Patch heart monitor for more information. He wouldn't diagnose me without more info, and after seeing the results of the Zio Patch he said I needed to see a cardiologist. My plan was to travel again to see a cardiologist familiar with POTS. My POTS support group said they didn't like Dr. Cohen because he wouldn't diagnose them, but honestly, I really liked Dr. Cohen. He gave me the tests I needed for an accurate assessment, and he was careful and thoughtful. I'm not upset that he wouldn't diagnose me, because I have better information for the diagnosis from someone else because of what he did for me.

I ended up finding a Cardiologist here in Bismarck that is familiar with POTS. I was really surprised by him, and I'm fairly certain he's the only cardiologist locally that is familiar with POTS in adults. I did a lot of digging and asking around last year and couldn't find a doctor who was familiar, and I think this doctor might be new since my asking around. Dr. Stephen Boateng, D.O. at Sanford in Bismarck. I don't think he's an expert on dysautonomia, but he is a very good and careful doctor. I really like him. Dr. Boateng was able to look at all my testing and see the evidence of POTS. He was concerned with my high heart rates on the Zio Patch results, particularly one spike I had. He diagnosed me and had me try a beta blocker: Metoprolol ER 25 mg. In short, it both worked and made me worse at the same time, so he took me off it. I plan to explain this in another post (or this one will get too bulky.)

What is POTS? This explains:





Endometriosis story:

Before seeing him, I went to a gynecologist at Sanford to discuss all my menstrual issues. 2 months of bleeding heavy every day, abnormally long PMS, extra pain... you get the idea. This wasn't the first time I've tried gynecology. Last time, about 4 years ago, I went to a very experienced doctor that I really liked, but she retired just a couple of months ago and I wasn't able to return to her. I initially saw her because I had a MRSA abscess on my vulva - and before you freak out and wonder what I was doing to get it there I can explain. A family member had MRSA who I was taking care of. I probably didn't wash up often enough. Anyway, she helped me recover from the abscess, but did other gynecological tests while I was seeing her. She told me I needed to consider a laprascopy to look for endometriosis, but warned me about the cost. My insurance would not cover the cost, so I decided against doing it. In retrospect, I really wish I had done it then instead of waiting until now. Why? Because I was worse back then and I would really like to know just how much worse I was - I'm fairly certain my naturopathic doctor and acupuncturists have helped me recover from most of my endometriosis before I had the surgery. But the fact of the matter is that I still have endometriosis, and it's officially diagnosed now.

This new gynecologist I saw first had me get an ultrasound, and it showed a few cysts on my ovaries where I have complained about pain. She said a laparoscopy was a very reasonable next step, and so I finally decided it was time to just have it done. I think I'll write a different post about the surgery itself, because I think I can share a lot that will help those of you considering having it done. Especially those of you with chemical sensitivities. I had problems,  I went through 3-4 IVs, but I believe it was worth it. My doctor said she found a lot of scar tissue, probably evidence of past endometriosis. I had endo in a few places that she was able to burn out of me, but I had some on my ovary (the one causing me pain) and she couldn't remove all of it without damaging the ovary. She said she burned it though. I had to have 3 incisions, and now for 2 weeks I've been nursing my belly and trying to let it heal. I'll share photos in the next post where I go into detail. My post-op is in a few days, and we'll discuss treatment options. Endometriosis is a life long illness that will have to be managed.

What is Endometriosis? This video explains:
https://www.youtube.com/watch?v=yM88T1R8HD4

(Blogger doesn't let me embed all videos on youtube - so I had to link to this one.)

Between recovering from surgery and going on a beta blocker for 8 days that made me worse in some ways, it's been a difficult time for me. Very difficult. And our finances are scary bad now. But I'm glad I went through all of this. I'm glad to have official diagnoses, and I'm glad to have this on my record in case I need more medical help - especially in emergency situations. No more arguing with doctors, they can just look at my records and see I'm not a psychopathic hypochondriac. That alone is worth everything I've been through!

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.

Fight or Flight... I'm Taking the Flight

My stress level is up to there *points to roof of house.* I can't talk about it, I'm overwhelmed. Fight or flight is telling me to just run far far away and never look back. Short version: I'm in the process of trying to find a lawyer to take my disability case, but this is very difficult with chronic fatigue when all my energy is going to my part time job and looking for doctors.

So I want to write about some various musings I've been having to get them off my mind. I view this like trying to take flight in the "fight or flight" situation, but I can't fly when I have all these obstacles in the way that I need to clear out of my flight path. How do I have the energy to do this? Well I woke up this morning with itching, small hives, feeling highly fidgety, lots of anxiety, and muscle aches. I tried to calm my body down with calming stuff... didn't work. So I drank a cup of black tea. That worked! I'm much more calm, almost sleepy, but my brain is awake with unfocused random thoughts that I can't seem to focus in on. This is not the kind of energy I need to accomplish anything. I'm too irritated and scattered to get work done. And this isn't real energy, it's adrenaline. This is a therapy post. This post is what anxiety looks like in my brain.

1. Politics

How do people have the energy to be angry about politics all the time? What if people channeled that gift of energy into action that actually helps people? Instead of getting upset with people you'll never meet in person, why not make the world a better place for those around you? I know this doesn't sound like me - I've always been one to pay attention, have an opinion, and be idealistic. I know this sounds like I'm over simplifying.  I've always been annoyed with people who make statements like the one I'm making now. I think that's what exhaustion does to a person like me - helps them simplify stressful situations down to what's most important. And what's most important? Stop alienating people around you with your anger about politics, and start listening to what people around you need to make their world a better place. Help one person at a time get what they need to be a good person for our society.


2. Violence

Since when has the world ever been a peaceful place? What is different about our world now that we should expect it to be a peaceful place? Did the Roman Empire have violent video games? Did the Crusaders watch violent movies? Did the Vikings have assault rifles? So why do we blame video games, movies, books, sports, and other violent entertainment on creating violent people? Is violence only a learned behavior? What are we doing to help people not want to be violent?


3. Negativity vs Positivity

Why is this even an argument? Negativity is not inherently a bad thing. Positivity is not inherently a good thing. Too much of either is just living in denial. Feeling and thinking negativity in some cases can be a healthy way to protect ourselves from things we don't need in our lives. I'm negative about toxins, poor finances, low quality food, video games getting released before they're finished, books I love getting turned into bad movies, too much snow... what's wrong with feeling negatively about these things? No, they shouldn't be my main focus, but I'm allowed to feel negatively about them. For instance, if I say, "I'll never be athletic enough to be a Ninja Warrior, but I know I can achieve this job promotion!" then the positivity I tagged onto the end doesn't actually change the negativity in the first part of the statement. What's wrong with feeling the disappointment that I'll never be a Ninja Warrior? What's wrong with letting myself focus on the grief of letting go of my dream of being a Ninja Warrior? Distracting myself with the positivity about the job promotion doesn't allow me to process what I need to feel about never becoming a Ninja Warrior. Once I process those feelings I can focus on the positive feelings of the job promotion without feeling like it's not what I really want for myself. Negativity does have a place, and it's not always bad. If someone is stuck on a negative thought, don't automatically shoot it down and assume they're a negative person. Maybe help them process that negativity? Listen to them. They might have a legit point about something that needs solving, and if it can't be solved, they might need help processing that grief. And don't just focus on the positive - that's really annoying and can amply negativity. It's repulsive. When I'm feeling negatively about something I don't want people telling me positive things to focus on because I don't want the distraction - replacing with positive thoughts doesn't solve the negativity. I want to work out my negative feelings so I can grow and move on. It only is a problem if I'm only ever negative. If I'm never feeling positive, that's dangerous and unhealthy... but it would mean I need therapy, not positive thoughts to distract me from working out the negativity.

I know that positivity does greatly affect our mood, our thinking, and our energy levels. It's best to work out the negativity so we can let the positive guide us instead. I don't need to write about why positivity is a wonderful thing. We see words of affirmation, acts of service and support, and people trying to bring positivity into the world everywhere we go. It's beautiful and I'm grateful for the positivity. I need to write about why negativity is not always a bad thing, because I'm getting sick and tired of all the negativity shaming.


4. Friends

I don't think I can express this enough. Just because I don't have the energy to invest in you doesn't mean I don't care about you. I've had to take a major step back from Facebook, especially Facebook Messenger. I've met so many people who want to connect with me since we have similar health experiences. I understand - I want the connection too. I want to know I'm not alone. The problem is, I'm burned out. I know I'm not alone the point that the chronic health issue epidemic is overwhelming me. I care deeply about every person I meet who suffers with a chronic illness. I really do. This epidemic has become my life passion. But I can't be friends with everyone. I don't have the energy, and when I do try to keep up with my friends I get so drained so quickly that I have to walk away. It isn't that my friends are needy. It's just that they're people. People take energy. I don't have energy. I feel badly about all the friend requests that go unaccepted and all the messages that go unanswered. It isn't my desire to ignore people - I really would rather not come across like I'm ignoring anyone. It's not you. It's me. I don't have the energy.

I've found a social outlet that's surprisingly very helpful: Final Fantasy XV A New Empire. It's a mobile war game. It's not even a good game. In fact, it's often a pretty lousy game. But I've been very surprised by the guild I joined. I've been playing it for about a year, and we've grown so close that we call each other a family. My guild is full of amazing people from all over the world and we have so much fun just being a family. I can play the game when I want to, and I can avoid it when I want to. I can choose to be social if I want to, or I can just work on building my empire as I want to. There's no pressure. It's only ever fun. I can be myself without ever talking about my problem. There is no reason to talk about my life problems in the game - it's a place I can go to leave all my problems behind, with people who are tons of fun and very caring. The game doesn't take a lot of effort or energy to play. It's all in real time, so there are deadlines and timing issues if I choose to engage in them. But I can play as passively and as slowly as I want to, and I don't have to participate in anything I don't want to. It helps me feel a lot of accomplishments too.


5. Let Me Be Me

I'm a woman. I'm passionate about certain video games, manga and comics, TV series, and other nerdy entertainment. I'm passionate about health through nutrition and lifestyle. I'm passionate about social economic issues, such as choosing to buy products made by people who are fairly and humanly employed. I'm passionate about learning about who other people are and how other cultures work. I'm passionate about my faith in God and how my religion serves God.

I don't care if you don't like me. I wasn't born to be liked by everyone. But don't tell me I'm wrong to be who I am. I'm not a useless leech of a person because I play video games. I'm not immature because of my taste in entertainment. I'm not an unrelatable person or a party pooper because I take charge of my medical needs and take my health very seriously. I'm not a judgmental negative hypocrite because I try to live in modern society while making the most humane choices on what I buy. I'm not out of touch or a freak because of my faith in God. I'm not a fake person because I love learning about the world when I can't afford to travel.

What this thought boils down to is this: I'm tired of the positivity pushers criticizing me and my friends for not living up to their idealistic opinions on how people should be. I'm getting annoyed by the people who think they know what is best for others telling me my habits are not habits of good useful people.

Actual things people have said to me:

"Video games waste your time. Try meditating instead if you're looking to feel good about yourself through something else."

No. Video games and meditation do not serve the same purpose, and video games have tons of mental and emotional benefits. There's nothing wrong with enjoying myself in my free time. Is it worse than going out partying, drinking, doing drugs, joining a gang..? Maybe I'd play more board games if I knew people who enjoyed them - are board games a problem? And who says I don't meditate and pray?

"Why do you read children's comics? Try a biography to help you learn more about the world."

I'm reading children's comics? Do you even know anything about manga and graphic novels? I'm pretty sure this story about arranged marriage in nomadic times in Turkey wouldn't interest children, but okay. And maybe I need my fantasy because I need a break from the world? Who are you to judge how I entertain myself?

"If you don't change your views on abortion we can't be friends."

Okay bye. I guess all the other things we had in common and all the fun times we shared mean nothing because I value life, families, sexual morality, and the innocent. That's not my problem. Don't like my views? Don't talk about abortion with me. Problem solved. My other friends handle this really well, why can't you?
"You didn't go to that psychic fair I told you about. Don't you want to get better?"

I don't want to pay money to get "help"  from a "psychic." How does that show that I don't want to heal? If I'm wrong not to go, don't judge me for being skeptical. Educate me. Don't have the energy or knowledge to educate me? Then accept my choice.
"You don't love God enough. He will heal you if you love Him more!"

Okay... but God made us with the ability to learn how to heal each other. Doesn't He work through doctors, scientists, herbalists, farmers, and other people who look after our health? Maybe It's actually God's will that I experience all these health issues so that I can help other people ? Have a little faith in my faith! Sheesh. Faith is not an emotion. Faith is something we do through the struggles in life. Faith isn't about getting what you want from God, as if He's your sugar daddy.
"Your diet is wrong, all that meat will make your body acidic and make you worse, and you really need to take this supplement even though your doctor told you not to."

Want to see my labs from before this diet and compare them to my labs now? It's working for me. Doesn't mean it will work for you. And that supplement gave me neuropathy, so.... why don't you just shut up? I'd be open to hearing about how it worked for you, but no, you're just telling me what to do without getting to know me.




...I think I've typed out enough of my cluttered thoughts now. Now they're out of my head. :)

December Doctor Appointments Part 2

Part 2 about how my doctor visits from December went... I haven't been able to even consider writing this until now.

I got thrown so off balance from that trip that it's nearly March and I'm still trying to reclaim my balance and stability. Going off all my supplements and cheating a bit on my diet really upset my body. It's been a roller coaster ride of extra long PMS (about half the month), mood swings including total lethargy/ apathy and depression, weight gain, fibromyalgia flares like I used to get before going to see my doctor for the first time, inflammation and sore joints, lots of gut irritability, extra dry peeling skin, increased sensitivity to light and sound, feeling jumpy and easily startled, continued palpations...

But honestly, the worst of all has been my temperature issues. I've been freezing to the point of shaking while sitting in an extra hot bath or in front of the space heater. My skin will turn red or swear, but I still feel hypothermic internally. I can't even feel the heat on my skin sometimes. Other times I'll feel like I'm running a fever, but if I let my skin be exposed to the air my skin will freeze. It's torture - I can't feel comfortable!

In the last few weeks I've started to have what I think are increasing histamine issues. Any food I eat is leaving my skin itchy with occasional small hives or welts, but worse than that is it leaves me fidgety. I can't sit still without feeling the need to squirm, like ants crawling in my blood stream.

Over the past week I've been fighting low blood pressure too, to the point that even salt and licorice aren't helping enough. Exercise raises my systolic about 5 points, but not my diastolic. I question the accuracy of my blood pressure machine a little bit, but it hasn't given me a reading over 95/55. The thing is... the readings feel accurate. I never feel truly sleepy - "tired" to me feels like I'm overspent but still have to burn off a chocolate bar before I can fall asleep (I don't eat sugar.) This week I've been feeling so sleepy often, and caffeine is making it worse. I'm fairly confident I crashed my adrenals. Again.

I'm fighting to regain stability. My body was really relying on my supplements and diet, and now I'm afraid to even consider stopping them again.

So was it worth it? The not taking my supplements and cheating on my diet for weeks so I could see a neurologist?

Well... I don't know yet. Dr. Cohen was great to work with, I really respect him. I don't have conclusive results from the testing yet, though. Based on the Zio Patch results he wants me to go see a cardiologist. I'm going to go, but I can't afford to go quiet yet. I also want winter to be over before I do more traveling. I've seen lots of cardiologists in my life for my Pulmonary Stenosis, and I'm tired of hearing the same thing from each one: "Not quite normal, but you're okay, I think, so just come back in a year to redo the tests." I think it's finally time to see a specialist - a cardiologist who is Dysautonomia literate. A cardiologist who can explain my heart rate issues. Someone who can actually tell me what's not quite normal and what to do about it.

I think what was worth it was getting the Zio Patch test done so that a cardiologist can worth with me right away rather than just doing more testing. My Zio Patch showed some issues. But I also have some issues with it.




The problem is that I clicked the button to record a symptom way more than it says. I was told on the phone that I didn't click the button during some of my heart's biggest results, therefore it wasn't considered to be problematic on my test results. The problem is, I'm fairly sure the Zio Patch only recorded about half of my button presses, so I'm willing to bet I did actually press the button during those times. It infuriates me. Their diary log for why I pressed buttons wasn't large enough, so I included a note page full of why I pressed the button. That note page was clearly ignored. But the results I do have do show problems. I just don't know if these results are concerning enough to get a cardiologist to take me seriously.

So no, I'm not sure if it was worth it yet. Either way, the Zio Patch left me a horribly itchy nasty rash for 2 weeks after I took it off, and that was tormenting at times. The rash crawled up into my neck and arm pits, so it wasn't possible to just ignore. So I need the results to be worth it to make up for that rash! :)

As for my other tests...
Lyme testing showed a past mycoplasma infection and one or two bands positive for Lyme - can't remember and can't find results. Either way, 3 bands are needed for a Lyme diagnoses. Yes, I did do the Quest testing, not the Igenix. It's very possible this test wasn't sensitive enough, I know. I chose to do the Quest testing knowing all this due to cost and availability. I knew it might only be a starting point.

The echo? Well no one ever contacted me to give me results. My doctor said he was told the results didn't show some other disease. The nurse that performed the echo was the only person to tell me he saw the valve with the Pulmonary Stenosis. So I know it's still there, at least. I'm hoping that the cardiologist I see can review the results for me.


Up next is my hearing with the judge for my disability case. 2.5 years of appeals are leading to this hearing. I don't have much conclusive evidence to present to them, just lots of doctor visits and labs. I know people who have won with less diagnoses than I have, but I highly doubt I'll win - at least not here in North Dakota. They don't normally give disability to people under age 50 because they say "young people are resilient." I'm not totally bedridden or in a coma, so therefore I can do some type of work. They have no understanding of how disabling chronic fatigue is, and it's been very obvious through the whole case. I keep arguing about the fatigue (and I am officially diagnosed with it), but they kept denying me saying the fatigue isn't "severe enough." They don't have a clue, and they're not trying to listen to my doctors or look at me themselves. I'm ready for it to be over. The stress the case has caused me has not helped at all. I often wish I never applied at all. I felt pressured into trying to do something for our financial situation, but this case has been more work than I've been able to handle.

Anyway, I'll update this blog when I have a plan for the cardiologist... yay... I'm so exhausted. I just want my life back. I don't want my life to be about my health anymore. Tired of this. I just want to be a person that can work towards life goals and dreams again. I want kids, I want to own a house, I want to be able to brag about achievements in my career... I want a career... yeah. I'm tired of this.

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