Surviving the Worst

Well. I’m slowly climbing back from the worst rough patch I’ve ever had, but I’m here. I’m writing. My arms work well enough to type again. This is progress.

From the last few posts, you can see that the last few months have been one long rough patch, but it took a sharper turn the last week. The thing with experiencing the worst is it’s like a nightmare taking tangible form. The world drains of color. Nothing brings joy or relief. I couldn't see the other side, and it felt like I would never climb out.

But I am getting to other side.

I’ve had some really severe insomnia for about a month and a half. I am a lifetime insomniac and go through periods of not sleeping well but this was different. I was only averaging 3 hours a night and some nights, I only slept about an hour, long after the sun came up. The thing with illness is sleep is the center which all forms of symptom management orbit. If you don’t have sleep, it doesn’t matter how much you rest, eat well, exercise, etc. Without sleep, everything else is pointless.

I tried all my usual tactics, including changing my sleep medication. But the reason I was having such a difficult time sleeping is I was having to spend a good portion of my time in bed during the day and I was constantly waking up in the middle of the night because I wasn’t breathing. The latter is not an uncommon occurrence but the less sleep I got, the worse my breathing got and the more time I had to spend in bed. It was an unending cycle I couldn’t break.

I don’t know how people who have to spend all of their time in bed do it, but being bedridden is always a ticket to insomnia-ville for me. I also kept over-doing it as always and making myself bedridden again.

I did manage to make it to my pulmonary function test two weeks ago though. I’m hoping to write a post about it since it’s a standard test for Myasthenia. It’s a brutal, exhausting test that includes such exciting activities as breathing into tubes, hyperventilating on purpose over and over, and getting locked in a glass pod. It was nice to show up though and it’s the only test I’ve made it to this year, so it feels so good to check it off the list since I won’t have to do it again for another year!

But I didn’t rest properly after the test and ended up bedridden and back at insomnia-ville again.

But then my body had had enough and my muscle weakness turned to paralysis. Paralysis can come at any time with Myasthenia but this was the worst bout I’ve ever experienced. I couldn’t get to the bathroom without help. My husband had to push me around the house in my wheelchair, two thresholds I have been dreading and hoping wouldn’t happen for a long time or never.

We made arrangements to go the hospital but I had my husband call my doctor to see if that was the right choice. My doctor said that if the paralysis entered my respiratory muscles, then we needed to go. Even though I had little use of my limbs, I was actually breathing ok, for me at least. A healthy person would still assume they were dying. Going to the ER is stressful and offers serious risk. I knew I needed sleep and rest and I was not going to get either of those there. Also, my doctor has still not authorized immunotherapy—steroids and IVIG—for me, which is standard treatment for Myasthenia. I really don’t know what they would do for me at the ER. So I pushed through it. Survived moment to moment. 

It’s a skill I’ve gotten really good at. I’m an epic level survivor.

I haven’t had to spend any time in bed the last three days. The paralysis is starting to subside and I’m sleeping better. I don’t know if I have turned the corner yet but I feel like I’m getting there. The world has some color again.

I’ve been practicing what I call “militant resting,” moving as little as possible, focusing on my breathing, and giving my body the patience and care it needs. Now if I could just stop over-doing it and let my body recover, that would be great.

I missed my MRI at Stanford again and sent a message to my doctor asking for another option, hopefully to do the MRI locally since this is the 4^th time I’ve had to cancel it. I have another appointment there in two weeks. I really need to improve so I can finally show up.

I got my fancy, new record player that was my gift to myself for winning my short-term disability case and I’ve been lying on my couch listening to a lot of music, many of my albums I haven’t listened to in a long time. Music the best kind of medicine; it can be auditory resuscitation. As something fun and uplifting, I've been working on taking pictures of some of my vinyl collection I’ve been accumulating the last few decades. If you want to see it, follow me on Twitter or on Instagram.

It feels like there are shades of normalcy in life again and I'm working hard to get there. My husband has been the unsung hero in this awful saga. He is always the one who deserves all the glory. The last few months have easily been harder for him than for me since he has to care for me, while working and doing everything else. This was the first time I have needed help with every task so I've been working hard to get back to some functionality again. I'm definitely getting there. We survived it together like we always do and watched all of "Cut Throat Kitchen" while I rested.

Since my condition continues to decline and I've struggled to show up to appointments and tests to finally make headway toward treatment, I have this overwhelming sense of dread and fear. What transpired last week did not help this. But I have decided that I won't live in fear of the future and what may come next. I want to try to enjoy each day--laugh with my husband, listen to music, watch the birds in my yard, do everything I can do enjoy each moment.

When I was feeling at my worst, I wrote a poem to remind myself of this:

I refuse to walk in fear
To tread in trepidation
To worry what each corner brings
But instead
To wake each day to a fresh start
And face that possibility with an embrace
Each corner is a new chance
Something to learn, something to fight, something to laugh with
But I refuse to walk in fear toward it
Not anymore 
Instead, a gesture toward hope


I hope all of you are doing well out there. I'm hoping to get back to regular posting again soon. Peace and love to you all :)

The Week That Was, April 8th

I guess I didn’t manage to do any weekly updates in March either so here’s hoping I can do a few in April at least.

-I’m finally starting to feel a little better. I’m climbing out of the longest rough patch I’ve ever had but I’m starting to be able to do a little bit of exercise again and it’s been multiple days since I’ve had to spend part of the day in bed. Woo hoo for a little verticality! The view from my couch is always better than the view from my bed for sure.

I shirked all responsibility this week since I’ve been feeling better. I didn’t prepare for appointments, make appointments, work on my applications that needed to be finished, etc. I just enjoyed the feeling of functionality a bit and put it all off.

It was lovely.

- Yesterday, I shared a sponsored post that’s been in the works for some time. Someone from SaltStick contacted me a few months ago about doing a partnership and I debated it for awhile. I have no plans to monetize this blog. That’s not the direction I plan on going but since I’ve used their product every day for years now and I have found that many with Dysautonomia have never heard of it, I thought it might be a good idea. The best part about it is they offered everyone (in the US at least) a coupon code to try the product. Check out the post and find the code.

Even my husband uses their product since they were created mainly for athletes in mind. He takes some before he does a hike or when he goes to Tough Mudder events.

-I found out about a month ago that one of my poems is going to be published. I submitted some stuff last minute to my alma mater’s literary journal and had no expectation that anything would be accepted. I’ll share the poem when the journal is released, which should be in the next few weeks. They have all the authors participate in a reading but I had to decline to attend. I would love to have gone but going to an event like that isn’t in my realm of possibilities right now. Maybe someday.

- Monday is my mom’s birthday. This week marked 6 months since she passed too. When I spent much of the last month in bed, I had to put the grieving process on the back burner. I just couldn’t face it when I was drowning and desperately trying to swim back to the surface. I had planned on going to the convalescent home where she lived and did hospice care to play their piano on that day. I haven’t played there since before Christmas. I would like to play there once a month at least but I haven’t been well enough to do that. I’m not sure I’ll go that day. I might end up crying more than playing. I do want to go soon though.

I’ve been playing my keyboard almost every day again and I’d love to go make an offering of music in her honor. She loved Elton John so there’s one song I’ll definitely be playing, which is at the end of the post.

-I have a really unpleasant pulmonary test next week that I am NOT looking forward to. It's a pulmonary function test. Luckily, I’ve done this test before so I at least know what to expect. It’s at the hospital a few towns over. I’ll have to breathe hard into multiple tubes for about an hour, which is brutal. I did this test a year ago and this should determine if my respiratory muscle weakness has indeed worsened, which is definitely feels like it has.

Compared to a year ago when I did the test, I’m on a higher dose of Mestinon now and I use multiple inhalers every day. Even with these, I struggle to breathe every day. I have to limit how much I talk and I had give up singing completely because it always ends in disaster. My soul feels incomplete without singing but I’m hoping someday to do it again. When I can, I’ll be able to perform again. 

The respiratory weakness is my most difficult symptom to manage by far so I’m hoping when I finally start immunotherapy that there will be some improvement. My quality of life would improve immensely if this symptom wasn’t so severe. Unfortunately, it's the most dangerous Myasthenia symptom because you can slip into Myasthenic Crisis at any time, which is why I have to be so careful every day.

I just want to get this test over with.

-Speaking of Myasthenia, an article popped up in my alerts that discusses the potential discovery of new antibodies associated with Myasthenia. It is extremely challenging to diagnose. Some test negative for the current antibodies associated with the condition and this leads to delays in diagnosis and treatment. This has been the case for me. My neuro at Stanford told me I likely have one of these undiscovered antibodies. The longer treatment is delayed, the more permanent damage Myasthenia does to the body. It's been years since my symptoms started and I still haven't started treatment. It's good to know that research is ongoing for the disease and there's hope that people will have access to a diagnosis and treatment sooner! 

-I have some great news to share. If you’re on the Facebook page, I already mentioned it there. I’ve discussed many times on the blog that I’ve been in a long, grueling battle with my private disability insurance for the remainder of my short-term disability. After two years and multiple appeals, I found out a week ago that I won my case! We didn’t think I had a chance in hell since multiple law offices declined to take my case and winning any disability appeal is nearly impossible without legal support.

This was my last appeal so I was waiting for one last denial letter. Then I’d set it on fire, shake my fist, and shout some expletives and move on with my life. That was the game plan. Then they called me and told me I won my case. I’m still in disbelief. It's not a monthly payment or a permanent disability unfortunately. It's just a lump sum of a few remaining months of my short-term disability, which the insurance company denied me. I'm in the process of applying for state disability right now.

A few people have asked me to share what strategies I used to win my case. Since my disability was through a private insurance company, the process was different. That’s why I couldn’t find a lawyer. Very few take private disability insurance cases. An office in Texas almost took my case but they ultimately declined. I will write a post soon sharing some of the knowledge I gained from this process soon.

It’s a huge victory since I spent an unbelievable amount of time and energy on all of my appeals over the last two years. What a relief.

I bought myself a fancy new record player as a reward.

I hope all of you are well out there!

Sponsored Post: "Why Salt Can Help Alleviate Symptoms of Dysautonomia"

Today's post is a partnership between Kind of Broken blog and the makers of SaltStick. This is my first sponsored post and I decided to share this post with you because I have used their product every day for years now. I wouldn't have agreed to this partnership if I didn't believe in the product. Enjoy this informative sponsored post and some of my comments at the bottom:

"As most readers of Kind of Broken probably know, Dysautonomia is an umbrella term for autonomic neuropathy, meaning the autonomic nervous system (ANS) does not function correctly, reducing the effectiveness of nervous signals between the brain and other organs including the heart, pupils, intestines and blood vessels. This is why Dysautonomia patients often suffer from symptoms such as low blood pressure, rapid heartbeat, tunnel or blurry vision.

One common manifestation of Dysautonomia is known as postural orthostatic tachycardia syndrome (POTS), which occurs when the ANS cannot compensate for changes in body position. Thus, standing is usually accompanied by rapid increases in heart rate and a drop in blood pressure.

The link between low blood pressure and severity of POTS symptoms has been heavily explored by the medical community. However, the advice to consume ample amounts of water and salt to increase blood pressure and relieve symptoms hasn’t changed much over the years.

Here’s a little more detail on why salt can help alleviate symptoms of Dysautonomia:

The link between POTS and low blood pressure:

As we said above, the medical community has heavily explored the relationship between POTS and low blood pressure. Currently, there are three main theories:

      I.        As described by a 2012 study published in the Journal of Geriatric Cardiology, the act of standing causes blood to pool in the legs and feet, due to gravity. In a healthy person, the heart rate will increase slightly and the peripheral blood vessels will constrict to keep blood in the upper body. This response depends, in part, on the ANS. In a Dysautonomia patient, the nervous system does not properly activate these changes in heart rate and blood pressure, and all the blood will remain in the patient’s legs and feet, resulting in lightheadedness upon standing. Bottom line: An impaired ANS prevents the body from responding to changes in position that require increases in heart rate and blood pressure.

    II.        Another theory, suggested in a 2005 American Journal of Physiology paper, states that POTS symptoms are due to an overreaction to changes in the baroreflex mechanism, which is responsible for regulating blood pressure to the brain and other organs. The 2005 paper found that POTS patients’ bodies have an exaggerated response to changes in the baroreflex, which could result in increases in heart rate. Bottom line: POTS patients’ bodies do not properly respond to the baroreflex mechanism which helps regulate blood pressure.

   III.        A third theory (published in a 2005 Hypertension paper) suggests that the genes responsible for regulating nitric oxide are underrepresented in POTS patients. Nitric oxide helps regulate blood pressure and also contributes to the release of noradrenaline, which is the main neurotransmitter for the cardiovascular system. Thus, impaired nitric oxide release undermines the systems that regulate blood pressure and heart rate in POTS patients. Bottom line: POTS patients suffer from impaired nitric oxide production, which hampers blood pressure regulation.

As you can see, there’s no consensus about what exactly causes the low blood pressure in POTS patients. Regardless of the initial mechanism, the treatment seems to be the same: Drink a lot of water and eat a lot of salt. In the next section, we’ll explore why this helps alleviate symptoms.

Why salt increases blood pressure:

Like nearly everything in the body, blood pressure is maintained through a balance of water and certain key minerals, one of which is sodium. This balance is, in part, regulated by the kidneys.

Blood contains water in addition to many other elements, including blood cells, minerals and nutrients. Whenever there is too much water in the blood, the kidneys work to remove the excess and send it to the bladder to be excreted. The process of removing extra water relies on a balance of sodium and potassium, which work together to pull the water across the walls of your blood vessels through osmosis. This process has been examined extensively in medical literature (American Journal of Physiology, 2006; American Journal of Physiology, 2012; Nature Reviews: Nephrology, 2012; Journal of Human Hypertension; 1996).

When you consume a lot of sodium, without consuming a similar amount of potassium, this balance is thrown off, and the kidneys cannot pull enough extra water from the blood. This results in a greater volume of water in the blood stream, which puts pressure on the walls of your arteries and veins, thus raising blood pressure. In a healthy person, this would be a bad thing, but in a POTS patient suffering from chronically low blood pressure, this is ideal.

A caveat: Why it’s important to create an imbalance: The link between sodium and chronically-high blood pressure is hotly contested, partly because one of the most effective methods to counter high sodium intake is to correspondingly increase potassium. The American Heart Association recommends an intake of 4,700 mg of potassium per day, and notes on its website that “potassium is important in controlling blood pressure because potassium lessens the effects of sodium.”

Again, it comes down to the balance of sodium and potassium. If a healthy person consumes too much sodium, which throws off the sodium/potassium balance in the kidneys, causing an increase in blood pressure, that person simply needs to consume more potassium to restore the proper ratio. Of course, in a POTS patient, raising blood pressure to normal levels requires an overconsumption of sodium relative to potassium. Otherwise, the balance is maintained, and blood pressure remains too low.

Takeaways: How to apply this knowledge:

Now that you have a greater understanding of the role salt plays in helping to relieve symptoms of Dysautonomia, we’d like to provide a few steps you can take to put your knowledge into practice.

Eat a lot of salt. This one is pretty obvious, but it’s worth repeating the common advice to consume more salt, which is about 40 percent sodium. Exact recommendations vary, ranging from seven to 15 grams per day. Either way, it’s far less than the American Heart Association’s recommendation of approximately 3.5 grams. The bottom line is that you want to consume more sodium relative to potassium in order to keep blood pressure at normal levels. If you’re consuming the recommended 4.7 grams of potassium per day, you’ll need to really increase the table salt.

Try SaltStick. Of course, all that salt in your food can sometimes be … a lot. Salt has a distinct taste, and it can sometimes get tiring to consume savory foods all day long. SaltStick, which contains 215 mg of sodium in each capsule, may help. There are two major benefits to consuming SaltStick for POTS patients:

      I.        It doesn’t taste like salt. SaltStick Caps are flavorless and easily digestible. Commonly used by endurance athletes exercising in the heat, SaltStick is formulated to enter the bloodstream with as little resistance as possible -- either from flavor or absorption in the stomach. If you are tired of the flavor salt adds to your food, consider supplementing with SaltStick instead. Note that SaltStick is also non-GMO, vegetarian, gluten-free and does not contain any sweeteners such as high-fructose corn syrup. Just the electrolytes you need, in a form your body can easily absorb.

    II.        It provides more than just sodium. Remember, most physiological processes rely on a balance among minerals in the blood. “Salt” and “electrolytes” are both umbrella terms for several minerals, including sodium, potassium, calcium, magnesium and chloride. All of these minerals are important for a variety of functions, only one of which is blood pressure, and consuming nothing but table salt will mean you’re missing out on the other key electrolytes. Because SaltStick contains all of the above electrolytes, you can be sure you’re getting everything you need. This is especially important, given that more than 60 percent of men and women consume less than the recommended daily amount of magnesium, and more than 50 percent do not consume enough calcium.

But wait! Doesn’t SaltStick contain potassium? It’s important to remember that POTS patients want to over-consume sodium relative to potassium. Given that one SaltStick capsule contains 63 mg of potassium, it may seem counterintuitive to use SaltStick as a method for increasing sodium intake. However, this should not be a cause for concern, as each capsule contains more than three times the amount of sodium than potassium.

SaltStick is designed to mimic the profile of electrolytes contained in sweat, which results in a 215 to 63 ratio of sodium to potassium. For the endurance athlete exercising in the heat, consuming this much sodium in relation to potassium is not only acceptable, it’s recommended because this athlete needs to replace electrolytes lost through sweat. SaltStick is not recommended for sedentary individuals precisely because capsules contain levels of sodium that only make sense if you’re sweating in the heat.

However, for the POTS patient who wants to over-consume sodium, SaltStick may be ideal precisely for the reasons listed above, and the inclusion of potassium in each capsule should not be of concern because of the high levels of sodium.

Conclusion

We hope we were able to shed some light on why salt can help relieve symptoms of Dysautonomia. By consuming high amounts of sodium, relative to potassium, patients can raise blood pressure to normal levels, which can help counteract the lightheadedness and other negative symptoms.

If you are tired of salting your food, supplementing your diet with SaltStick Caps may help because each capsule is flavorless and also provides additional electrolytes that keep your body functioning properly.

Important Note: The above should not be construed as medical advice. Contact your physician before starting any exercise program or if you are taking any medication. Individuals with high blood pressure should also consult their physician prior to taking an electrolyte supplement. Overdose of electrolytes is possible, with symptoms such as vomiting and feeling ill, and care should be taken not to overdose on any electrolyte supplement.

Image source: pixabay.com 

SaltStick has offered a discount code for Kind of Broken readers. Use the code "KIND25" and it is good for 25% off all products bought through our online store at shopsaltstick.com. Note that it only applies to customers in the U.S., and it will expire April 30, 2016."

My Comments: 

One of the first suggestions you'll hear when you get a diagnosis of Dysautonomia is to increase your salt intake. It takes some trial and error to find the best way to do this because each person's presentation of the condition is different as well as our tastes. Since there are many other electrolyte products out there besides SaltSticks I wanted to make sure there was information that would compare the products, which is provided in the chart above. 

Many in the Dysautonomia groups I'm in use ThermoTabs, which are cheaper. I haven't tried those. I've only ever used SaltSticks and I've had success with them. I'd love to hear your experiences with other electrolyte tablets or other salt products. 

You can also read my post here I wrote awhile ago discussing some of the other products I use to try to reach the recommended high salt intake for Dysautonomia patients.

Increasing your salt intake is just one piece of the puzzle in managing Dysautonomia symptoms. Dysautonomia International lists many different strategies for managing the condition that are useful. Since Dysautonomia presents uniquely in each individual, it's important to find what works best for you. 

I hope this information has been helpful and I'd love to hear what other strategies you use to get more salt in your diet.

Happy salt-loading!

Climbing My Way Back

Hello out there. Sorry for the silence here on the blog the last few weeks. I’m working my way back to the world and the blog. It’s a slow climb but I’m making progress.

A few weeks ago, I did something really really stupid. I’m keenly aware of my limitations and I spend so much time managing symptoms and staying within those limitations, but I suppose I needed a reminder that they are still there. I tried to play with one of my nephews. It was just a few minutes of unbridled fun, but it was far more than my body could handle unfortunately. I often feel sad that I can’t participate in the fun when my nephews come over and I worry that they’ll remember me as a lump on the couch, but I should’ve been smarter. I guess all I can do is learn from the mistake and just enjoy watching my husband play with nerf guns with them. That kind of fun is just not feasible for me anymore.

Sigh.

I’ve had to spend much of the last few weeks in bed. I had to stop exercising and my daily walks so I’ve lost much of the strength I had gained. It took me about a week to recover from my mistake but then a severe bout of insomnia and depression took over. I’ve forgotten what it feels like to sleep through the night. It’s been weeks now. Sometimes I get stuck in these insomnia loops that I can't break out of. It's been awhile since I have had one this bad. The irony about insomnia is you think that the more your exhaustion builds, the more likely you'll finally sleep. Nope! It doesn't work that way. No matter how nicely I ask my brain to sleep, it lets me know that it is the boss and does what it wants. 

So this is why I haven’t been posting. I even had to take some time away from all social media for awhile too so I could just focus on surviving. The last three weeks have been a bit of a veritable shitstorm, but I’m trying to remain undaunted. I’ve had rough patches before, even really bad ones like this. I always eventually climb out. It was almost three weeks since I left the house, and I told husband I started to feel like one of those animals that lives in a dark cave for so many thousands of years it eventually loses its pigmentation and sight.

Day 15 Selfie 

The worst part about all of this is I had to miss multiple appointments and the important test I was supposed to do at Stanford last Monday. This test was going to be the catalyst to finally starting the standard immunotherapy used for Myasthenia treatment. At least, that’s what my doctor said. I’ve been waiting for years to finally start that treatment now. It didn’t help my terrible record of showing up to appointments and tests so far this year.

I am continuing to decline overall but I also keep screwing up and setting myself back. I’m sure many of you out there know this cycle: you start to feel a little better, you try to do too much, you end up immobile and back at the beginning. I keep doing this so I’m trying to finally learn from my mistakes and make some changes. Old habits die hard though.

I’ve stopped trying to use my stationary bike. I used to have some success using it and it does help my stamina but the last few times I used it, even when I was having a good day, I ended immobile for a few days. When I’m able to exercise successfully again, I’m going to stick to yoga and my short half block walks with my trekking poles. I was having some success with that. If exercise is only setting you back, then it’s counter-productive. This is what I’m finally learning. Exercise has to enable functionality, not the reverse.

I need to stop trying to do too much on days before appointments. I need to really take the day before to rest so I can show up.

If I do have a moment where the clouds part, the sun breaks through, and I'm feeling pretty good for just a brief moment, I need to not try to do everything I usually can't do to capitalize on that moment. I'm trying to remember that those moments do happen occasionally but they are actually a lie. No matter how good I feel in that moment, my limitations are still the same. Reminding myself of this will hopefully help me just appreciate those moments instead of pushing myself over the edge each time. 

One of my greatest fears in life is making the same mistakes over and over. So I’m really trying to stop asking too much from my body every day and hope we can live in a more peaceful communion.

The last few weeks have been brutal but there have been some bright spots. I try to sit in our little yard when I can. Some days I can’t but when I can I sit out there a few minutes at a time so I don’t crash too hard. It lifts my spirits. 

One benefit of being completely immobilized is I was able to finish two books and I re-watched multiple seasons of Downton Abbey. I also actually made it outside very briefly yesterday. Husband took me to the thrift store around the corner from our house and I got some beautiful framed vintage art. These were absolutely worth pushing myself to finally leave the house again.

My brain is mushy from such little sleep for weeks so this post is a placeholder until I can get some functionality back on all fronts. I have a sponsored post from SaltSticks coming hopefully next week so stay tuned for that. I love their product. I have some other posts I was working on and a few changes in mind for the blog. 

I can feel better days on the horizon.

I hope all of you are doing well out there.