I’m reading the first book, read the second book and the other three books look promising.
Post is for playing around with the new WordPress editor – so far I don’t like it.
I’m reading the first book, read the second book and the other three books look promising.
Post is for playing around with the new WordPress editor – so far I don’t like it.
I did a lot different this year. I used some bullet journal style tracking including my word count for the day and a sentence about what I did. I wrote down a variety of things for inspiration or brain storming. I prepared for NaNoWriMo by setting up a process and working on *my* process.
I realized some things. Like when you’re developing a story you don’t need to pick the perfect option or motivation for your character now, you can consider every single option you can think of. Silly things. I realized silly things. But important nonetheless.
This is the first year I’ve ended NaNoWriMo with multiple story ideas. I’ve done enough work now to recognize some trends in my own writing ideas – so there’s a story I want to tell. But there’s other ideas I haven’t figured out yet. For example, writing a character with mental illness who still manages to be successful and kept together and, well, a hero (or heroine).
My goal became to write for 30 days in a row. I did not have enough of my story developed to actually write scenes and dialog and content. I spent a lot on further development – because I was trying to cram too much into 1 story? I also arbitrarily assigned myself a word count goal of 16,000 – and also removed/rewrote a chunk of 700 words and still kept over the 16,000 words.
My next steps: 1. Set up scrivener files for each story idea. 2. Figure out how to track progress and word counts. Progress is story specific, word count doesn’t need to be story specific. 3. Start Chuck Wendig’s No Fuckery Writing Plan. Like officially. 4. Writing next will be outlines for at least 2 of the 3 stories. The third story is probably a short story? It’s got to sit and simmer for a while so it’s decide if I want to bounce around or focus on 1 at a time.
See that? A plan!
I’ve had improvements in my physical health in the last few months – and now better mental health treatment in the last 2 months – and I think that’s helping more than I can possibly explain. I’ve participated in NaNoWriMo every year since 2012 —-
— This is the first year I’ve felt I have something I can continue to work on. Mental health treatment probably has a great deal to do with that. I’ll know more for certain after I’ve done more work on my mental health/well being. I have this funny feeling as I write this blog post. I think it might be pride and accomplishment because I did a thing! Emotions are confusing and hard. Anyways –
If you’re a writer, or trying to be a writer, and dealing with depression, anxiety, ptsd, or any kind of mental illness. You aren’t alone, keep at it. As they say, “Your story isn’t over yet;” Also Chuck Wendig has lot of good things to say on the subject.
Here’s a poem (?) I wrote sometime in the past few months when I decided to do some writing about mental health and my mental illness symptoms. I don’t remember writing it. It sorta sounds like me but doesn’t all at the same time. I can’t tell if it still needs an ending/if it’s complete. I’ll leave the interpretation up to the reader.
Some days I don’t like living in my mind
The weather is always changing.
Nothing is where I remember leaving it.
Doors that were open yesterday are locked today.
Stairs and routes from rooms to rooms change, often overnight.
Windows don’t work right, they won’t shut or they won’t open. The blinds will get stuck too.
Sometimes I wish it was brighter so it would be easier to find my memories.
Other times I wish I had more rugs.
You can sweep things under rugs but eventually the rugs stop laying flat and you trip.
There’s no way to forecast the weather, it can change stormy in a breath –
Or be calm and quiet in a breath.
Days and days everything will be as I expect
Something happens. Someone happens. Time passes.
And the rules.
My mind has so many rules to keep track of too.
Rules for talking to people, feeling, being alone. Rules that have nothing to do with my body.
Some days everything is stress. Everything is bad.
Sometimes I can’t leave the house. I can’t deal with anyone.
I could title this all kinds of different things, like Why the US Healthcare System Fails People with Chronic Illness, or Please Will More Doctors be Honest with their Patients. Or something about how chronic illnesses and mental illnesses together make doctors afraid of you.
I saw a new psychiatrist today. I haven’t seen a psychiatrist in over a decade, partly because of all the other doctors I see or have seen. I mention that because I’ve gone through what feels like a thousand new patient appointments with new doctors. Lately they all go pretty much the same. If I’m lucky they’ll have a tidbit of insight or confirm something and agree with someone else. I’ve had good and bad experiences with new doctors. You can feel anywhere from validated to broken.
It’s probably worth noting that when I fill out the paperwork that doctors request their new patients fill out, I include my own lists for my medication, health history (or diagnoses), and allergies. The preferred (better) response to this is appreciate for the clear and thorough information. The not preferred response is shock and awe.
As you probably guessed, the doctor I saw today was shocked and in awe. Her eyes widened at least three times. She couldn’t believe my list of allergies or medicines, and stumbled over my medical history. I think her jaw dropped once? More than once she asked a question that would be answered by reading 6 to 10 more words of the paperwork she was already reading. She picked out the medicine she doesn’t prescribe because it’s “very old” as well as commenting how I’m on “so many” sedating medications. (I don’t think she read the word “as needed”.) She commented on my xanax prescription, probably because she doesn’t prescribe it, but offered no alternatives.
All of this happened while she was firing questions at me. She moved quickly but didn’t specifically rush me. She was very nice but also clearly overwhelmed. She was even surprised at the number of doctors I have – which shouldn’t be a surprise in the US healthcare system after you see the number of diagnoses a person has received. She also assumed I wanted more medicine since she told me that considering the medicines I’m already on, she doesn’t want to give me more medicines. (If I had a nickel for every time…..)
And one I haven’t heard before…. she didn’t want to get in the way of any of my other doctors. Psychiatry is very specific the last time I checked, if she’s willing to send records to other doctors then she’s working with them, not interfering.
Probably the most interesting? successful? useful? part of the entire experience? Within 5 minutes of talking to me and looking at my paperwork, she asked if I was ever diagnosed with Borderline Personality Disorder. This means that I’ve had a doctor at Mayo Clinic, psychological testing, and a random psychiatrist all have the same “opinion” – that I do have Borderline Personality Disorder. But no one wants to make recommendations on medications.
She had very little to say about the problems I described with my memory, including lost time, and how through working with my new therapist I’ve come to learn I probably/likely/definitely have PTSD.
She clearly felt I was beyond her capabilities but never actually said this. Really good doctors say this! Great doctors explain why!
In fact, I even felt like she wanted to run away. As she was leading me back out of her office towards the front desk she was walking fast enough to disappear behind the turns in the hall. I’m accustomed to people waiting for you or giving you directions. Logically I know that this was probably the way my brain interpreted the situation – and probably not what happened – but I still feel like subconsciously she was trying to get rid of me/get away from me. It’s super weird to hold both those thoughts at the same time.
No, I’m not expecting a new doctor to have answers – but the more people involved in a problem, the more likely you are of finding some kind of help. If you can’t help me, refer me to another doctor, please! Or if you aren’t sure how you can help, tell me. This appointment wasn’t bad or terrible, but it wasn’t productive or pleasant either.
Ultimately, she referred me to another place to receive this thing called TMS that’s supposed to help treat depression. I have an appointment tomorrow for a “cost free consult” so we’ll see. Not holding my breath. Insurance, time, and money all figure in.
I’ll need to try another psychiatrist but it’ll likely be a few weeks. Finding a new psychiatrist is difficult on my mental health. Especially with my other doctor appointments and trying to build a relationship with a new therapist. The first psychiatrist I tried never returned my calls (2 left over 3 days with a message that calls are returned same business day!). So I guess this was a slight improvement. Maybe the third try will be a success.
*image courtesy of inspiro bot. Seemed appropriate based on the various blank spots of various sizes that I have in my memory.
I find it fascinating to see the effects of physical and psychological stress evident because of tracking sleep, heart rate, and activity level via my fitbit. Because of my personal physical and mental illnesses I overreact to stress at like a biological level.
Here’s some screenshots of my heart rate history…..
This first picture shows my week at Mayo Clinic. The highlighted day, May 25, was a Friday and the last day I had an appointment. I went home May 26. This was one of the most stressful experiences of my life.
Now for the next screenshot. This one is slightly different. It shows the first day I felt better after getting sick after getting home from my trip to Mayo.
Third one shows an instance where I wasn’t as stressed as I thought while still being super stressed and upset… I had a number of distressing or anxious experiences. One triggered a 1.5 day migraine that I think was followed by a dissociative episode lasting 4? days. July 13 was the day after I received my first round of neuro/psych testing results and was extremely frustrated by the news.
And the last picture. This is the day after I had my appointment about all of my neuro/psych testing. This time I finally had a doctor ask me the right questions and confirm there’s something else different about my mental health and identity something I can do to make my life easier. It’ll take work but maybe I can spend less time on a roller coaster.
This post brought to you by early morning insomnia.
I started writing this post back in June. Why didn’t I publish it? —
I don’t have the ‘official’ diagnosis for BPD or borderline personality disorder yet. However, from what little I’ve read it explains so much. More things keep ‘clicking’ and if I don’t end up with this diagnosis I’ll be asking the doctor what looks like BPD but isn’t.
Recently, I read this from Psychology Today. It’s about people with BPD fearing what their emotions will do. The article says it better. Then things just clicked. HOLY Fucking SHIT I keep getting answers. This article even potentially explains what happened when my physical health became worse.
I live in fear and I feel like very little is under my control.
Fear that something bad is going to happen. Fear that someone is going to think something bad of me. Fear that something bad is going to happen to a person close to me. Fear that I will upset someone. Fear I will overreact to something small and mundane and not be able to calm down. Fear that something physically is going to happen to me when I’m not at home and I won’t be prepared – like a sudden migraine or an allergic reaction. Fear of getting lost. Fear of what will happen if I end up upset and can’t control it and end up more upset. Fear of losing friends if they _____. Fear of harassment on the Internet. Fear of having to wait 30 minutes or more for a doctor appointment. Some of these fears I’ve been able to logically move past. Some of these fears I think I cope with by just not feeling.
I didn’t realize it was fear until after all my testing for personality disorders and after reading that article. This explains why I find compartmentalizing my emotions so dangerous. If I ‘save it up’ to feel later it will be so much worse, especially because I’m afraid of what will happen. And I’ll forget about it, until it comes back, like because something has triggered an emotion or memory.
Rereading this, most of it seems ridiculous. I’m not actively fearing for my life. I live in a relatively safe area. I isolate myself quite often and literally have less of a chance of being in a dangerous situation. But mental illness is ridiculous. Mental illness is illogical. It’s difficult. I’m going to go out on the metaphorical limb here and assume I was afraid to make these words public, despite the fact that in terms of the Internet in 2018 my blog basically doesn’t exist. Again, mental illness doesn’t make sense.
More logically, I didn’t post this because I’m still waiting to hear back from the doctor in charge of looking at all the testing I did for personality disorders. The initial information I received in early July is that I have depression and anxiety. That’s it. There was something about not exhibiting behavior for BPD. I still have so many questions. But that doesn’t explain so many things. I’ve realized a good chunk of my daily behavior is impulsive. From stress eating almost daily to suddenly getting up in the middle of a TV show because I decided to do something else like go play a game on my computer to deciding to clean out the closet. My impulsive behavior is collecting hundreds of kindle samples and thousands of knitting patterns. Or starting 8 different books before I decide to actually read one. Deciding I need a new pair of shoes today. Then there’s the mood swings and the times where I don’t remember what I did all day, even when I try. It’s not like when you can’t remember what you ate for dinner last night. It’s because there’s a dark hole in my mind instead of memories. I fear something happening that will remind me of a bad experience and then my emotions will stir up – like a sudden summer storm that might spawn a tornado.
And leaving the house. Oh. Leaving the house and being around people is exhausting. Conversations have so many rules to follow. Small talk is tedious. Avoiding people is easier. Driving somewhere is stressful. You can’t trust drivers around you. Most people drive distracted. If I get cut off or something else sudden happens I could spend hours shaking from the jump in my heart rate. Then there’s the physical problems like making sure I have snacks because it’s so hard to find something safe to eat outside of the house. It’s so much easier to stay home, inside, away from everything. Besides, home has netflix and our cats and a supply of chocolate.
Because of my health and my anxiety, I spend all day trying to keep my thoughts, emotions, and impulses under control. I can’t go shopping because I don’t have a job and we have a mortgage. I can’t just go for a walk because it’s summer in Texas and my body doesn’t tolerate heat over like 77 degrees (F). I can’t spend hours in the kitchen baking because I won’t be able to do anything after I’m done – and I don’t know if I’ll be able to clean up everything before it’s time for dinner. I’m jealous of people who can drink alcohol and eat whatever they want. I’ve started to impulsively “break” my diet. I’m gluten intolerant and it clearly still causes problems but I’ve started eating foods with gluten again. Thankfully I’ve been on a high dose of a mood stabilizer for years. I still have mood swings. I’m afraid of the mood swings now. Or something triggering me into feeling overwhelmed by emotion. I’m afraid because every time something happens that’s difficult, it’s harder to calm down afterwards. Harder and harder. And the migraines. Because some things are better I can see how stress triggers the migraines. Last time I had a migraine I lost 5 days. I don’t remember what I did.
I suspect? Assume? I fear? Probably fear. That when I finally hear back from the doctor who is in charge of the neuro-psychological testing I completed in the end of June and being of July he’s going to tell me I don’t have BPD at the current time because I don’t have the extreme behavior – because I limit and control myself via anxiety and fear. And then that means I’ll have mental illness symptoms that doctors can’t explain on top of my long list of physical symptoms that doctors cannot explain when all I want is help to straighten out my mental health so that maybe just maybe my physical symptoms will calm down too. I’m afraid this doctor does not truly understand what living with chronic illness and chronic pain means.
*scrolls back up*
So I guess I didn’t publish that post because I knew I had a lot more to say and I didn’t want to face it. (And if you read the entirety of this blog post hopefully it wasn’t as painful as I imagine it to be. You deserve a cookie, or a strong drink, or some ice cream. (Also, I’m afraid to reread this for edits or I might not publish it.))
My mind is a place I don’t want to be and I don’t know what to do about it. I think that means I don’t know who I am either.
And not remembering how I feel at home when I can’t bear to leave the house when I do actually leave the house to see doctors isn’t helping.
So far I have –
What’s something interesting going on for you?
I’d like to record something about my experience at Mayo Clinic in Rochester Minnesota in May 2018, but I’m not sure how to go about it yet. I was there 7 days total counting arrival and departure days. It cost over $1500. I was referred by one of my doctors. It appeared to be impossible to get in on my own. I tried.
If you don’t count learning how my mind and body reacts to being made to deal with mental and physical stress outside of its safe environment (is that really productive?) — I had a solitary productive appointment while I was there.
I didn’t have the time or energy to really explore the area and appreciate the small museum quality displays throughout the main building on the Mayo campus.
If I were to sum up the experience, it was completely misleading and I never would have traveled with just one guaranteed appointment. Mayo Clinic does nothing to welcome or introduce patients to their services. I also recommend no one with chronic illnesses goes to the Mayo Clinic in Rochester, MN.
I’m still deciding if I should go into detail about the experience.
Reader, would you like me to share?
This is the first winter season I’ve not been on (strong) antidepressants since 2012? And I possibly should have been on something before then, but I’m also currently taking another medicine that’s a mood stabilizer and I know it’s helping too. Side note, my biggest known depression symptom is the “losing interest in activities you enjoy.” Except for video games, of course.
In the past I always assumed I got stressed around the holidays because of how people being stressed in general can make you stressed. And holiday STUFF. This time, there was less to be stressed about. (We didn’t do official presents for example.)
After a couple of days of barely being able to cope with anything external to me – about a month ago? I started to put things together and looked up seasonal affective disorder.
First, there’s this:
Seasonal Affective Disorder (SAD) is not considered as a separate disorder. It is a type of depression displaying a recurring seasonal pattern. To be diagnosed with SAD, people must meet full criteria for major depression coinciding with specific seasons (appearing in the winter or summer months) for at least 2 years. Seasonal depressions must be much more frequent than any non-seasonal depressions.
Huh. So what I assumed was stress was likely my depression being worse. Back to having difficulty with lots of stuff, like the prospect of needing to make an unexpected phone call basically causing my brain to shut down. Add in my counselor getting sick and having to reschedule counseling a bunch, when I actually really want to go because I want to talk about this SAD thing. Then I remember how I had similar problems last year where I really wanted to see my counselor but she got seriously sick. (I’m hoping she’s “just got the flu” but the flu is pretty tough this year.)
Then everything began to come together, especially when I read this part:
Symptoms of the Winter Pattern of SAD include:
- Having low energy
- Weight gain
- Craving for carbohydrates
- Social withdrawal (feel like “hibernating”)
Oh. huh. Hibernating! So not seeing people and not being on social media and not writing blog posts and just basically being at home, depression explains all of it. I think I’ve become an expert at being functionally depressed. Do the stuff that needs to be done. And I’ve been having no trouble getting to sleep and sleeping like the dead most nights. That’s not normal for me. This coupled with regular depression symptoms explains why I had so much trouble with NaNoWriMo in November and why I come up with all my new knitting project ideas in the summer. Quoting from here by the way.
This excludes medicinal intervention. This is not medical advice; I assume you’re an adult and you accept the consequences of your actions.
Peppermint has documented anti-fungal properties. I have tested and discovered that peppermint tea daily will help keep the thrush down. I’ve also started drinking some mint or peppermint tea after drinking milk or eating sweets like ice cream. If I don’t drink peppermint or mint tea for a few days, the thrush can start to make a comeback.
Probiotics. Prescript-assist probiotics suggest you empty a capsule into your mouth to help combat the thrush. I suggest doing this at bedtime. It helps. Also, taking a probiotic normally of course helps.
Sinus washing. If you get congested when you have thrush, it could be traveling up into your sinuses. Sinus wash can help remove the thrush, slow it down. I prefer the bottle style and recommend this brand. Make sure you use distilled water. Please, use distilled water.
Depending on your situation, you might also find a tongue scraper to be useful. You have to be careful because a tongue irritated by thrush is more likely to bleed. You can use a tongue scraper too much.
If you get really desperate, you can mix hydrogen peroxide and water together and gargle. It helps to tilt your head back and let the mixture sit for 5-10 seconds. You need a quarter of the amount of peroxide compared to the amount of water. Put some water in a cup, and just a tiny bit of peroxide. Do not swallow. Do not do this very often because it could also effect the positive bacteria in your mouth.
Starting with a crash course on how to research on the Internet.
Important background information: I have an MS in Applied Sociology. I spent years in college learning how to identify objective sources for information. Clearly, you don’t know for sure that I’m lying, but who would lie about one sociology degree, let alone two? Sociology degrees aren’t sexy. Basically, a good rule of thumb is to judge every nonfiction book (and personal website) by its author. A doctor writing about histamine intolerance is going to do a better job than I will. Also, if someone is trying to sell you something in every single article they write, maybe they aren’t the best source. Or at least not your first and only source. I recommend looking for information that’s the same across multiple sources. A journalist trying to educate you about something is someone who’s good at telling people about stuff and things, not automatically good at researching stuff and things.
Update Jan. 7, 2018 – I saw this on Twitter. A guide to read and understand scientific papers for a non-scientist. (There’s a PDF link included in the page linked.)
Now that’s over and we can start. First and foremost, histamine is important and your body needs it. It’s necessary for healing. However, your body doesn’t need buckets and buckets of it.
I’ll start with some online sources and then a couple of books. When I started researching histamine intolerance there was very few things on the internet when you searched simply “histamine intolerance” and now such a search brings up clear easy to read sources as well as confusing sources that want you to buy recipe books or expensive supplements, or both. I think I started in 2008 and in the last 3 years the information seems to be growing exponentially. The first source Google provides is actually written by a doctor. Supposedly. I hope. She could be lying. but – She also refers to one often cited academic journal article about histamine and histamine intolerance.
Side note, don’t be afraid of academic journal articles. I would suggest reading them slower – without skimming – if you’re unfamiliar. Also if you can, print it out and underline or highlight the parts that interest you. You’ll find that histamine intolerance is a little easier to handle if you understand some of the science behind histamine and what it does to your body. It’s completely understandable if you don’t want to start there though and so I’m only including one journal article here.
This article titled, Histamine and histamine intolerance, was published in The American Journal for Clinical Nutrition. I especially like this article because of a table that summarizes, or breaks down, symptoms mediated by histamine. Basically histamine is involved in the process of feeling that symptom. Again, it’s important to remember that your body does need histamine to function.
There are lots and lots of other online sources and remember they aren’t all equal. I recommend looking for different sources that agree. (Yes, I’m repeating some of the important things on purpose.) Also consider the type of information you’re looking for. For example, there are a ton of lists of high histamine foods out there and very few are exactly the same. You will probably find you can eat small amounts of some high histamine foods and that other high histamine foods are very bad things. With histamine intolerance, all food lists should be treated as guidelines. You know your body, you have to test on your own. However, some other information like food storage and preparation is fairly standard and doesn’t take a college degree to understand. Let’s continue with sources.
If you only want one link about histamine intolerance for now then go here.
1. This one mentions handling and storing of foods. Old food is higher in histamine and so this is an important factor of histamine intolerance diets. This is probably the biggest and most important thing you can do that I guarantee will make you feel better.
2. Food lists: by degree of tolerance, a more general explanation, and a list meant to help control chronic hives. (But at the time this was posted the 3rd link didn’t work. It’s worked in the past so I hope it’s temporary.) I recommend using a book for a food list and not getting bogged down in the details. I recommend using a food list to help you out in the beginning and help determine the real big trigger foods you need to avoid. Like for me, the last time I ate fresh grapes it was as if I was allergic to the grapes. It was horrible. There are high histamine foods you should (eventually) be able to eat small amounts of. Especially if the food in question is fresh.
3. A detailed site, which includes more than just food intolerances, by a board certified practitioner (That’ll make more sense when you see her bio) from Australia. She’s not a doctor, but she clearly has done something to educate herself. She’s also not pushing books at your all the time. I wouldn’t use this as a primary site, but it’s useful to see what information is the same across different sites.
4. This is a good general website about food intolerances and also includes a lot of information on histamine intolerance. The majority of the histamine intolerance information comes from research completed by Doctor Janice Joneja. She’s been doing this for decades. Note the histamine intolerance page has a lot of links and tons of information. It’ll be overwhelming if this is new for you, but it’s a great link because it’s updated!
6. How about my favorite book ever for food intolerances and food allergies? This was my first source for histamine intolerance information as well as other food sensitivities. It helped me figure out my sulfite sensitivity too. I discovered histamine intolerance by accident because I already owned this book due to being diagnosed with food allergies and I was paging through it… I stumbled on the histamine intolerance diet and discovered I’d already eliminated most of the problem foods on my own. There were just two more foods, vinegar and tomatoes, and I was effectively following the diet. (Dude tomatoes are in so many places!) There was a few other things too, like hydrolyzed oils and preservatives that I didn’t know about. At the time, removing vinegar and tomatoes helped a ton. It’s probably worth it even if it sounds painful. Literally, this book saved me.
7. If you can find it used, this is best described (?) as an updated version of that book in #6. I say used because I think it’s sold as a textbook and so automatically more expensive.
8. I recommend anything by Janice Vickerstaff Joneja.
9. The concept of a histamine or inflammation bucket might be a good place to start in understanding the effects on your body. This site has a decent explanation for the inflammation bucket and I also find the site to be an example of something that is not a good first source. I am cautious about any site that says they research their posts but do not provide the sources with enough information to be able to find them and read on your own. I’m also uncomfortable with sites where every post or article also includes a sales pitch. Use caution with this website. Also, use caution with her Facebook group, when I tried to be a contributing member I found it full of people who didn’t want to learn and didn’t recognize that every body is individual and different.
It’s taken me forever to build this post because I wanted a collection of information without getting too in depth and detailed. There’s so much more you could add to this, like detailed information about how histamine works in the body. But I feel most people aren’t going to care about that immediately, they want to feel better sooner, then learn about the other stuff. This is probably verging on too long as it is. Regardless of the sources I’ve listed here, I think the most important things for searching the internet for information on histamine intolerance is to judge the quality of the source you’re using. Anyone can call themselves an expert on the Internet. I’m not an expert but I’m happy to share information so that other people can maybe learn things a little faster, and with less pain and frustration.
If you’re actually reading this and think I missed a large hole somewhere, leave a comment. Thanks.
I’m not a success story. My body doesn’t follow a set of rules, or react as expected and this is just one example. My physical therapist finally said, you’re done here until you get a second opinion. She finally stopped ‘beating around the bush’ and said, you shouldn’t be here anymore because most people leave PT way before this. (She tried to say it as nicely as possible.) Would have been easier if she just said go away. The last three appointments before my last physical therapy appointment that I’ve had the therapist spent much of the time asking me how I felt, what I was doing, and how it felt after I did x or y exercise. Every time I thought I was walking out with a plan. Every time I was confused why we were going through these steps. Every time I noticed more and more faces, less and less feedback. (Each appointment was 4-5 weeks apart. She never clearly said if I was meant to be doing anything different in between appointments.) Every next visit something was different. Then, after what became my last appointment everything became clear. My theory, my assumption, was my physical therapist’s boss didn’t want her spending time on me anymore. I wasn’t making enough progress.
Probably partly because I have pain and problems with exercise that are super difficult to explain.
Probably partly because my physical therapist doesn’t truly understand the different effects multiple sclerosis symptoms can have on different people. There’s too much variety in the symptoms.
Probably partly because I’m not like the typical physical therapist patient who comes to get something fixed after surgery or an injury. I’m different.
Probably partly because I take more time than the average patient and I’ve had more intensive therapy than the average patient. Similar to how I see more doctors. And I ask questions about anatomy.
When I left the last appointment she was saying things like maybe I need to get a second opinion and, again, asking me what I wanted to accomplish in PT. – My previous plans weren’t good enough after someone else had reviewed my records/her reports. She suggested I email her my schedule so she could give me pointers on how to increase my activity. We did that another time in the past, she didn’t follow through. I said sure, knowing nothing would come out of it. Then, out of the blue she followed up a week or so after my last appointment via phone. Why would she call when she stopped replying to the majority of my (occasional) emails with progress reports. I don’t even remember the content of the call because I said what she wanted to hear. She wanted me to go away, so I finally have and that last phone call was for her to get her due diligence completed.
Chronic diseases make you a patient some doctors don’t want to deal with. MCAS makes you a bad patient and it made me a bad patient for physical therapy because I continued to have something happen that slowed down my progress – most of 2017. Like a migraine for a week more than once, or 3 weeks of antifungal treatment via PICC line. Or an allergic reaction that left me sick for a week. Or I tried increasing how often I did my physical therapy at home, and it was too much, and my symptoms flared. Nothing is easy. Just once I’d like to be able to do what is supposed to make me better AND have it make me better. All year my physical therapy was one step forward, two steps back, or two steps forward and one large step back. Sometimes one step forward, nothing backwards. As compared to where I was a in January of 2017 I’m better, definitely, but I have plenty of problems and as of yet, no medical professional who wants to take the extra time to understand.
I completed the first 4 NaNoWriMo themed Coursera classes from Wesleyan earlier this year. They were super beneficial for me. This is one exercise from the course on setting and description. The instructions were to write about a ritual or routine in specific and significant detail in 500 to 750 words. I wrote mine about a specific type of doctor office visit appointment… getting my Xolair shots.
You went around twice before you find an empty space. You park your car, turn it off, take a breath and gather yourself, and leave and lock your car. You walk in the vague direction of the door, there’s no clear path between the cars – both parked and moving. It’s bright and a little too hot.
You pull up and park at the curb. Your travel time was less than 40 minutes; you skipped the construction on the highway. Before you leave the car, you take a breathe and gather yourself. From the curb the door to the office is less than a dozen steps. Immediately inside there is the window with sliding glass with a low counter. You nod in greeting, the woman behind the window slides open the small glass door, greets you, and passes you the clip board. You write your name and today’s date on the appropriate spaces and hand the clipboard back. The woman nods at you and you head on back through the door to the right. There’s a decoration of a smiling yellow face on the door which reminds you of decorations in elementary school.
Walking to the back, you pass a medical assistant and he says hi but nothing more, he’s busy. In the infusion center, not all the chairs are full. You never know if your appointment will be in a crowded room or if it’ll be you and the staff.
The head infusion nurse, Lynn, greets you with a smile, like always. She’s busy starting an IV for the young woman in the first chair. You smile, stopping at hi, while she’s with another patient. There are 8 chairs lined up on the right side, spaced enough for room for nurses to administer to their patients. You pick the third from the front. It’s one of the more comfortable dark red chairs. You place your bottle of water and phone on the table, your bag on the floor at your feet, and dig out your novel. You sit down, trying to get comfortable, for now the book is in your lap. The other older nurse, Kate, comes out from the back room where the wide variety of medicines and supplies are stored. The vials, bags, and syringes. This nurse is somewhat reserved but still friendly.
She greets you, “Good morning! Your Xolair is mixing.”
This means your shots are ready in 10 to 15 minutes. The medicine is thick and they don’t mix it until you arrive. In the meantime she brings you a blood pressure cuff, the small battery powered type that goes on your wrist. You attach the cuff around your left wrist and position your arm. The nurse stands ready to write down your vitals.
“124/76. Pulse 89.” She records the numbers as an alarm starts. The IV medicine for the second patient needs attention and the nurse heads to turn off the alarm. The alarms no longer startle you. Lynn is still busy with the same patient.
You sit quietly. The woman in the first chair is young and on oxygen. A thick book sits in her lap. The second patient is older than you, with her chair reclined. Sleeping perhaps? She’s curled up under a brightly colored fleece blanket. The fourth chair – to your right – makes the small child curled between the chairs even smaller. You don’t know how old he is but he doesn’t talk. He appears engrossed in his game on the tablet. It’s one of those educational games meant for kids to practice identifying words or colors and such. His watchful mother is nearby, periodically scrutinizing her phone.
Lynn is walking toward you with 2 syringes. How did you miss her leaving the room? She pulls up the short stool identical to every other doctor’s office and sits down near you. You sit forward in the chair and turn, offering your right arm first, as she pops the cap off syringe number one. The medicine goes into the back of your upper arm. That soft fleshy bit. Even knowing what to expect, the burning pinch is still a surprise. Now the first syringe is empty and she retrieves the second. This one goes in your left arm. You suck air through your teeth and it makes a hissing noise as she slowly pushes the syringe empty. One arm always seems to hurt more than the other.
“Does it hurt?”
“Just a little. Like usual.”
She nods as she finishes. You look at the clock high on the wall. 11:35. You can leave at 12:05. You must wait, in case this time your body decides the good medicine is bad. There’s almost zero risk though. You sit back, the pain in your arms a vague shadow. You open your book.
Over the weekend I had an epiphany of sorts. Or I was kicking myself. One of the two. I make sure I buy supplements with allergy statements on them because supplements with fish or shellfish ingredients can make me very sick – sometimes it sneaks up on you too. (I’m not an average healthy person so I rely on supplements.) It turns out I haven’t looked close enough at every single bottle – every brand – that I’ve purchased. I know that I made an easy/simple mistake. The vigilance required when taking supplements and having to deal with food sensitivities/allergies/intolerances is … inhuman? Scary? Overwhelming? Regardless, I’m still having problems resisting kicking myself over being this stupid. Anyway.
The biggest thing I’ve fallen for is “suitable for vegetarians.” And as an extension of that trying to determine what omitting details means or needing to know if food allergy label requirements for food also apply to supplements.
Here’s two labels in question. Just the backs of the bottles that have the allergy/safe for statements. I was probably tired or brain fogged or sick when searching for the magnesium and calcium supplements in the pictures. I saw the contains no blank words and figured I was fine because minerals. Also, what does hypoallergenic mean when it doesn’t clearly state it’s free of peanut, tree nut, shellfish or fish?
The following four labels are exactly what I want to see. They either have a statement showing they are free of the top 8 common food allergies or, in the case of the biotin, say suitable for vegans.
I’ve searched the FDA website now, with multiple keywords and found nothing helpful. (I started with Google.)
I can’t find a definition of vegetarian or what suitable for vegetarians means. There is also suitable for vegans – that’s much clearer.
This is my (/sarcasm) favorite (/sarcasm) result. I had one result when I searched the FDA’s website for “suitable for vegetarians.”
Other search results:
And the most important one but I couldn’t find anything that says the Food Allergy regulations apply to supplements….
I gave up and posted on Twitter and tagged a few different FDA accounts. I’m not expecting a reply, but maybe I’ll get lucky. (I’ll update this post if I do get a reply.)
Don’t do what I did. If you have food allergies or any type of food that makes you horribly sick all the time, read every single label, even if it’s the same brand. In fact, read them twice. And don’t trust “suitable for vegetarians” unless they define what a vegetarian eats and doesn’t eat.
Again: Because of my MCAD/S, MS, and other health problems, I need supplements. And the MCAD/S is also why I have to be so careful with supplements. It’s not a question.
Now I really need to get off the computer and go knit while leaning on a heating pad.
Specifically it’s candida. It’s so much more than a “yeast infection.” I just finished once daily 100 mg mycamine (mifungin) infusions. I did this for three weeks via a PICC line. The last week really did the trick. After two weeks I felt like I was 75% or so there. I compared it to being most of the way through your antibiotics course for an infection. Previously, I was almost permanently fighting oral thrush and the visible thrush symptoms would clear up but multiple symptoms with my throat never would. Finally, I insisted and my immunologist did a throat culture – for fungal. It came back in a week for candida. It really was everywhere. I can’t even imagine the stress this was putting on my gastrointestinal tract.
Side note, getting information on candida overgrowth (on the Internet) is maddening because people have such strong opinions about it. It also might be worth noting there are multiple antifungal oral options. There was something about every single option – either the active ingredient or an inactive ingredient – that meant it wasn’t possible for me. If you’re looking for information I would recommend limiting your searching to Google Scholar. You might call this post a follow up to my previous post about looking for information on fungal overgrowth. I’m also not particularly high risk, like organ transplant or HIV.
Because of the symptoms that have utterly disappeared after the three weeks of infusions, I can say unequivocally that I’ve had this problem for years. It increased in severity in the past 9-12 months. Based on my research, it’s possible that just having multiple sclerosis increased my risk. (No idea how, but I saw more than one academic journal article mentioning it.) Gastroparesis also increases your risk, but this makes sense considering that food sits longer and has more time to basically ferment in your system. Also, eating gluten free and drinking more milk doesn’t help because there’s more sugars to feed the yeast. I suspect MCAS increased my risk too.
Also, to be clear. This is completely amazing to me. Dealing with the PICC line, the infusions, and the systemic symptom blow up from the mycamine itself – because it caused a mast cell flare up – was ultimately worth it. On top of this I can’t put into words how astounded I am that I dealt with this for so long and this candida was just ON ME AND IN ME AND EVERYWHERE.
So, my symptoms. I think a list might be easiest. Most of these symptoms have disappeared. Yes, I’ll say it again, disappeared. Just my skin alone feels better.
1. Itchiness. My scalp would get unbearably itchy if I didn’t wash my hair at least every 2 to 3 days. A thousand times worse if I sweated a lot. My entire body would be itchy if I didn’t shower every 2 days at minimum. I had accepted that my skin was so sensitive to everything that I just needed to shower every night as often as possible. I know this to be true because I also washed my hair significantly less during the infusion treatment because of the PICC line and experienced no negative effects. I would have intense under arm itching occasionally too.
2. Smell/Odor. My bad breath is gone. (My husband might admit to how bad it was if I prod him some more.) My body odor itself is no longer as strong. I could never figure out why I seemed to smell sour after sweating more or showering less. Maybe like three day old beer? (That is so gross I can’t even begin to figure out which emoji is best.) It was unpleasant for me so I have no idea how it was for people around me. But a gradual change in your body odor is not really something you remember to ask the doctor about.
3. Eczema on my feet. A fungal infection on the heels of your feet and around dead skin does not look like a fungal infection on flat skin. I think the yeast was actually worsening eczema on top of causing other issues.
4. Residue. I don’t know what else to call it. The best example is what happened to my underarms. Some time long ago I realized I had this white pasty looking substance under my arms. My under arms were so sensitive I had to stop shaving. I would trim the hair with a simple battery operated trimmer. There continued to be this residue that looked a lot like built up solid antiperspirant/deodorant. I assumed it was a combination of dead skin and deodorant. It was actually reasonable to assume I was allergic to my deodorant.
There’s other parts of my body that has a similar type of “residue” that’ll I skip the details on. Belly button is probably an obvious one. Come to think of it, it was EVEN MY EARS. Basically, if it’s dark and/or moist there was probably a strange white build up if I didn’t shower/clean regularly. I’ve also just realized that I could have the same build up across my skin if I wasn’t able to do something as simple as rub down the length of my arm with a wash cloth in the shower. (Sorry, that’s a horrible sentence.) So, it was everywhere on my skin and if the area was moist (moister?) then it was worse.
I think that’s a good segue for switching to internal, wouldn’t you say? Some of these symptoms I’m not sure how much the yeast overgrowth contributed and how much is from my chronic diseases.
5. GI symptoms. I have less gas. I’m wondering if removing the inflammation caused by the yeast overgrowth will effectively reduce the severity of symptoms from my gastroparesis.
6. I couldn’t wear tighter clothing – like yoga pants for more than 10-12 hours. Actual leggings which are slightly tighter was even worse. Let me put it this way: chronic vaginal yeast infections do not have the tell tale white … substance. You get “irritation” instead. I put the word irritation in quotes because it seems like an understatement. More time will tell.
7. Sore throat and pain when swallowing. I would wake up in the middle of the night to pee and have a super painful spot in the back of my throat and it would happen again in the morning. I could lose my voice after lots of talking. I think I was drinking more water to compensate for this too. Sore tongue but you couldn’t see it so doctors didn’t believe me. I think I had a layer over my tongue that you couldn’t see without scraping. There was also the sensation of something at the back of my throat or tongue. It’s not something you can easily ignore. (MS can cause problems swallowing, so how was I to know?)
8. A bad taste in my mouth and a weird change to my saliva. I have a suspicion, that might be confirmed with my next dentist appointment next week, that the yeast was interfering so much so that I was at higher risk for cavities. I had all these tiny little cavities 6 months ago and I don’t drink much that’s carbonated, let alone anything like regular soda. The actual consistency to my saliva was also weird and well, wrong. How would you describe it? It was weird.
9. I think maybe my eyes had issues too. It’s weird to consider, hard to describe, and it wasn’t as severe as other parts of my body.
10. My bladder. I already have chronic symptoms because of MS. If I really was drinking more water that wasn’t helping. I might have less inflammation here too, but more time will tell since I was also on prednisone through the infusions.
11. Clearer sinuses and nasal passage. Over the past few months I’ve noticed an increase in crap in my sinuses. Like I was more congested and actually started using sinus wash more. Anyone who uses sinus wash probably understands why this is significant.
12. I should have less systemic inflammation too. This might lead to improvements in my levels of chronic pain and chronic fatigue. Maybe this will help my MCAS be less likely to flare? My migraines had worsened in severity this year, I was experiencing less but they were lasting longer.
13. INCREASED sense of taste. I can remember wondering why some foods seem so bland. I would also search for stronger flavors. The build up of yeast in my mouth was getting between me and my food. As a specific example, there’s a dark chocolate truffle flavored with bergamot among other things that tastes stronger to me. Food might actually be more enjoyable. More time will tell on that one too. Anyone with major food sensitivities and diet restrictions can best appreciate why this improvement is wonderful.
My symptoms had become so widespread and, well, all consuming, that I have realized some things as I’ve written up this blog post. It’s been a crazy experience.