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

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. :)

U2

On chronic illness support groups a common topic is music that helps people get through the difficulty with the illness. One of the most frequently mentioned artists for this is Lady Gaga. For me? I think it's obvious to anyone who knows me: U2.

It's Christmas Eve. I'm exhausted, just relaxing while the roast is baking. I'm listening to U2's new album, "Songs of Experience." As the song "Landlady" came on I had an epiphany. I was thinking through how many years U2's music has helped me stay strong, find reasons to be happy, learn to love myself better, and appreciate the people in my life. I started to wonder what it specifically that has touched me the most about their music. As Bono sang in "Landlady" about how much he truly respects and appreciates all his wife has done for him, it struck me. I love U2 so much because I'm very attracted to people who deeply love. Thinking through all my favorite people in my life, they've all been people who have a deep passion for something that makes people better. They have a true love and respect for humanity, and while they recognize and admit to the darkness and cruelty in people and this world, they still have this rich passion of loving people. I can't connect with people who don't recognize the darkness and despair in life and push it away. I connect with people who know the darkness like a close sibling, but always point to the light. That's my husband. That's my best friends. That's my parents. That's my heroes, some of whom I have met and some of whom I have not. That's U2, not just specifically Bono. But Bono is my greatest hero in the world today. U2's music is full of passion and love - they want nothing more than to make the world a better place. And they do. They make my world a better place so that I can make other's worlds better places.

What U2's music does for me is helps me not focus on my problems as a negative working against me, but instead their music helps me find my place in the world despite my problems and the world's problems. Yes, their music is very political. It's very personal. They very rarely write songs about romantic love. They can't write a simple fun tune, all their songs are heavy ("Lemon" might be the ONE song that isn't heavy, ha!) That's a turn off to many people, and I understand that. Many people think Bono's incredibly arrogant and claim to hate him because of it, but I don't think they're actually listening to him. But to me, music that doesn't have anything to say is boring. I'd rather have an arrogant insecure Irish man tell me how beautiful American's political system is than  have most Americans telling me how it's ruining our freedoms and liberties. I'm sick of American's views on America. Most pop music bores me to tears. U2's songs have so much to say that they always keep me pondering the meaning of my life in this world, and I thank them for keeping me focused on my purpose in this crazy world. Political or not, they keep me focused on love through this crazy mess of a world.

As "Landlady" came on, I was brought to tears by listening to how much Bono loves his wife. I have so much respect for Bono and Ali. They've only ever been married to each other, never any divorce. They show the world what marriage is all about. "I would win and call it losing if the prize is not for you."

My chronic illnesses can't take over my life and get me down when I have U2 singing about love and passion for all that is right and just in this world. My life isn't about me. I have value, no matter how much I'm hurting and held back. I have a place, no matter how broken and distant I'm feeling. I have a purpose, no matter how empty and drained I am. Their messages cut through my depression and anger and remind me who I am, who I was made to be, and how I can always keep growing despite my situation. I'm not defined by what I can't do, but by what I can. My health isn't my enemy. It isn't what's to blame for me not being the best version of myself.

So to Bono, Edge, Larry, and Adam: Thank you! 

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.

Vent About My Pain and Breathing Troubles

If I had the energy, I think I'd be screaming right now.

I had a very hard time falling asleep last night because of throbbing aching upper back and shoulder pain. This morning I have the same pain continuing on along with a tight aching chest. My heart feels so tired and sore. I feel like I can't breathe well enough because my lungs are too tired. I have to consciously breathe deeply enough because the automatic breathing system isn't doing a good enough job. And then that same spot in my gut is now constantly in pain instead of just in certain positions.

I've been sitting here for an hour, mostly still, and my pulse is 104 with blood pressure of 106/58. Systolic is higher than my normal for being at rest, and I'm always symptomatic when my diastolic is below 60.

I'm itchy and fidgety, as if I had a bunch of sugar, but I didn't. My skin is tender in certain areas, like I have the flu, but I don't.

I really want to be back on my supplements. This is so uncomfortable. 2 more weeks until testing. Can I handle 2 weeks of this? Can I handle the planes to travel to the doctors in this condition?

Whenever I try to gently stretch my back and shoulder muscles to release the throbbing tension the pain shoots to my brain and makes me feel so weak that I might pass out. When I try to massage it I feel like I'm going to break my fingers. I bruised my neck from massaging it last night, now I can't work on that spot.

I kind of wish I had a machine to breathe for me right now. Remembering to breathe is exhausting. Why won't my body just do it well without me thinking about it?

I'm wishing my last acupuncturist was here to do dry needling on these muscles. It was the only therapy I've ever had done to fully release the tension. If it were simple enough to just go to Arizona to see him I would. I don't know of anyone else in my area that does it. My new acupuncturist is excellent - she's incredible, but she doesn't do dry needling. She does cupping, which does help a lot, but does not fully release the tension. The cupping tends to open up my lungs though. It makes me cough for a bit before I can take a full satisfying deep breathe, which is an amazing feeling.

That's making me think my breathing troubles right now are probably directly tied to my extreme shoulder tension. If I can find a way to loosen the tension without taking my pills, will I be able to breathe normally again?

I can't think of ANYTHING but my pain this morning. I want to rest and relax, but I can't. All I can do is sit here and manage my breathing.

If I needed a doctor in town right now, who would I even go see? My acupuncturist would probably help the most, but she's very difficult to get into. I'm not allowed to see my chiropractor again until after the testing. He would probably help though. Every time I try to stretch I can feel several bones pulling and popping with the motion.

My heart is just so dang sore. It feels like it might give out from exhaustion.

I need some sort of stand that can hold my phone directly above my head while I'm laying down so I could watch a show on it without using my arms. If I just lay there on my acupressure mat my mind wanders to bad places that prevents me from relaxing. I need the distraction.

Oh great, now I'm bleeding where I've been massaging. Uggghhhh.

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.