Depression’s weakness

Image by Inspirobot - reads "Revelations are kind of a turn on" with what I think is the picture of a tall building in the background.

The other day I found myself looking at a book I was super excited about and received as a winter holidays gift some years ago. I’ve never read that book. There’s so many other books we own I haven’t read either. Why you ask? I realize now, with the work of done with a new therapist and a new psychiatrist that it’s because of depression. I always thought it was so many other things.

Staring at that book on the shelf surrounded by other books I haven’t read I decided the worst thing about depression is when you’re actually excited about the potential of something but you’ve never able to follow through. Depression taunts you with the potential of all the things you could be doing if you had the focus, energy, enthusiasm, and motivation. (That list is probably near endless. I’m trying to generalize.) You’d probably have more energy too if you weren’t looking at all the things you should or could be doing that are impossible because depression. Depression steals your action, your follow through, your doing.

It’s like a book sitting on your shelf, taunting you. Why haven’t you read me yet? Why? Why? Why?

Depression is sneaky and knows how to protect itself so it lies. It tells you there’s other answers to the questions of why. When you have depression, the answer is depression… except depression tells you it’s because you aren’t good enough, or it’s your illness (and therefore nothing you can do about it), or you’re afraid, or it’s the actions of another person, or, or, or, or….. There’s so many other answers to that question that aren’t true. (And yes, some that are, but we aren’t focusing on that right now!)

That’s depression’s weakness. You can do something about depression.

You can reach out and talk to people (even though it sounds impossible), take medicine, work with a therapist or counselor, read about techniques like cognitive behavior therapy, take different medicine (because the first one didn’t work), exercise, journal or write, eat chocolate, and … something that works for you that I haven’t thought of … It’s a long list. You might have to find what works but I promise something does.

Important note: I assume you have access to healthcare which also means you can also afford healthcare.

Doing something about depression is work. But it’s work worth doing because you can get back to doing life instead of just wishing you could do life.

One more important note. The details and feelings of depression are different for different people so maybe this doesn’t apply to you. (Like I have chronic illnesses and other mental illnesses so my depression is different.) Also, I’m not talking about being glum or sad or down for a few weeks or having bad days. I’m talking about being diagnosed with depression (or needing diagnosed with depression). If you want definitions, go here.

National Suicide Prevention Life Line

American Foundation for Suicide Prevention

Trans Lifeline

I am a survivor

I am the sum of all my parts. Even the broken bits and the parts I don’t like. The cracks are proof that I’m still alive.

People tell people with chronic illnesses to not let their illness define their identity. People say are you sure you want that ‘label’ in relation to being diagnosed with mental illness(es).

Well. Chronic illness makes you feel all kinds of things. I’ve come to believe that people without chronic illnesses don’t understand how it’s part of your identity and always will be. Every time I leave the house I have to account for a list of things a ‘normal and healthy’ person doesn’t. That’s part of who I am.

The same goes for mental illness. I was diagnosed with anxiety and depression over a decade again. In the past 5(?) years I started to wonder that there was something else. There were other things about my brain that made life hard to cope with, and they weren’t anxiety or depression. There’s been so many times I felt broken. Because I couldn’t remember something (from yesterday, this morning, or three years ago) or confused because I forgot where I was going when I was halfway there. I often feel disconnected – from everything – including myself. My therapist at the time dismissed these concerns. More than once. Hindsight says why didn’t I go elsewhere? But logically, I know it’s because I was too busy trying not to drown. (Now I know what a shitty therapist is like.)

Before now I was scared to learn more about my traumatic first five years of life and how that trauma effects me as an adult. Neglect and abandonment are just the traumas I know of for sure. In fact I have focused on my physical health until the last year or so. I wanted to be “normal” so I could go back to work. In that time my mental health suffered more. Probably. And I’ve survived too much stuff to be “normal” – but that’s the thing. I was strong enough to survive.

Last year I was diagnosed with borderline personality disorder and PTSD. (It’s probably cPTSD but I haven’t remembered to ask my doctor.) So I have more labels. But the labels are important because now I can get the treatment I need.

Now I understand much about the effects of trauma on the body, how these effects stick around, and what I can do to heal. I’m working on it and I still feel broken but now more importantly I realize I’m a survivor. Understanding trauma has given me some answers but theres so answers I’ll never have.

I’m broken and sometimes I feel like a mess but I’m still whole. I’m sick but that doesn’t make me less. I’m strong and I’ve always been stronger than I realize. I’m a survivor.

…. This post has sat as a draft for a long time. I’ve edited it a few times. I’m not sure the point, but I still feel I should publish it instead of deleting it.

Research: Borderline Personality Disorder and migraines

Borderline Personality Disorder: Treatment and Management — National Collaborating Centre for Mental Health (UK). from 2007 but the link to the full pdf can be found here

Borderline personality disorder and migraine. Study from 2007, full article behind pay wall.

Relationship between borderline personality disorder and migraine. Study from 2017. full article behind pay wall.

This one upsets me because doctors seem to group everyone with Borderline Personality Disorder and migraines together, saying they will all abuse their medicine, which isn’t true. Borderline Personality Disorder and the Chronic Headache
Patient: Review and Management Recommendations

This one is a little better because it notes where more research is needed. Personality traits, personality disorders, and migraine: a review

But I still cannot find the article I stumbled on that says people with Borderline Personality Disorder often have longer lasting, more difficult to treat migraines. It sounded like the type of migraine that occasionally destroys my life for the past 5-6 years.

Mental illness and the medical industry

inspirobot meme: Words say "Friendship is life itself. Life itself is friendship."

I really have no idea how to title this post, let alone start it, past picking an image from inspirobot. But here it goes —

As I learn more and more about my PTSD I realize more and more about how ignorant medical professionals and staff are (seemingly willfully at times) about mental illness. The people I expect to have some kind of awareness or understanding seem to have none. Initially I found this shocking, at this point, it’s unsurprising and tiring. I also realize experiences similar to mine – and worse – are not uncommon. I’m referring only to my personal experiences here.

Recently FB memories reminded me that in January 2014 I was basically assaulted and abused by ER staff. Part of the experience included me blacking out, I only know because my husband was present. Through my entire time there, when I was desperate to receive care when my migraines – which had just started to become severe – things continued to be handled badly. (There’s a thing known as patient’s rights – I’m not sure they respected any of them). I didn’t report any of the hospital staff’s behavior because it was too traumatic and I was too new to the going to an ER for a migraine experience. I tried to move on. I thought moving on would be better, safer, easier. It took at least 3 years to stop feeling like I was there when I remembered anything from that night. When I remember it now, it’s closer to a regular memory.

The FB post that triggered quite a few memories:

Reading the memory and posting about it triggered other memories including parts of an interaction with my previous counselor. I can remember talking about having flashbacks to being in the ER, and being confused and scared. I was questioning if they were flashbacks, questioning if it was a sign of PTSD. I was probably in some kind of crisis. She said yes, it’s post traumatic but no it’s definitely not PTSD. Denied that I had any further problems, just was having isolated problems with a difficult experience. Dismissed my emotions.

Not once, in the 4-5 years, with a visit every month on average, that I met with this woman did she ever consider that maybe she should send me to another professional, like a psychologist or psychiatrist. I have come to realize that she denied any chance of me having anything more than anxiety or depression – continually. Almost regularly. I must have started seeing her in 2012 or 2013, well before January 2014 when the shit happened in the ER. She offered me bandaids, and occasional realizations like a few sips of a cool drink, but nothing to actually help me understand my behavior.

I’ve come to learn that her behavior was at least in part, because of the stigma in the medical/healthcare industry that people with mental illness will try to collect more mental illness diagnoses. Sure, some might feel that it’s helpful to do this. I’m not judging them. But not all of us do. When I finally sought testing – an idea she resisted – after learning I might/probably/do have borderline personality disorder, she still resisted this idea and disagreed – but never elaborated on why.

So that’s four years of worsening symptoms – flashbacks, blackouts, dissociating for sometimes days, severe mood swings, and severe migraines triggered by psychological stresses – that maybe I could have had help with sooner. Because I wasn’t educated enough and because this (older) woman was so stuck in her ways of thinking, including her mental health stigmatization, I continued at many times, to not do much better than survive.

I think I have to continue to try to “move on” from all of this. Writing out this jumble might help. Since then I’ve started seeing a new counselor, further trained, and therefore prepared to help me understand my behavior. The new counselor has been a fresh and new experience. I wish that I had sought out testing and “fresh eyes” much sooner than I did but for so many reasons I didn’t. I wish I had “fired” her sooner. Sometimes I debate one more appointment with her to ask why she disagrees with my BPD and PTSD diagnoses/symptoms/presentations. But that’s a $50 question.

I think it’s also important to note that I have found it necessary to only tell some of my doctors that I was diagnosed with PTSD and Borderline Personality Disorder – because of the stigma, especially of Borderline Personality Disorder – thanks in a large part to TV.

Navigating the (American) healthcare system is difficult in general, and an especially exhausting and stressful ordeal if you are trying to get help for your mental health – assuming you can even afford to do so. Everyone’s experiences with mental illness are different, and everyone’s experiences with medical professionals are different too. Also remember, medical professionals are humans too. Unfortunately, sometimes I think some of them need reminded.

So my point. If you have mental illness and you are trying to get help, keep at it. It’s difficult and scary but worth it in the long run. It took me from July 2018 to November 2018 to finish psychological testing, get all the results, find a new counselor and find a psychiatrist. Now I have a counselor I appreciate and trust who’s warm and friendly. The psychiatrist I found (on the second try) seems to be really laid back and competent.

And if you know someone with mental illness – even if you have mental illness – offer them empathy. Educate yourself. Keep an open mind. Ask them how you can help. Don’t tell them what to do – which is hard when you see people in pain. Sadly, some people will also be in denial all their lives too – but that’s their choice because everyone has to seek care at their own pace.

Remember, you aren’t alone.

My Most Successful NaNoWriMo Ever

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.

What mind am I in today?

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
But then
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.

Why I Hate Breaking in New Doctors

A memory is a winning strategy. Like human sacrifice.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.

Fitbit heart rate tracking illustrating stress

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.

Why we can’t have nice things: Fear and Mental Illness

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.


Image courtesy of Inspiro bot. If you aren’t familiar, you should be. https://www.instagram.com/inspirobot.me/ or http://inspirobot.me/

My Hobbies and not Hobbies this summer

So far I have –

  • knitting: “Stitch Your Stash” (Local to DFW Texas) started June 1, 2018. I’ve got way too many projects started. Like usual.
  • knitting: “Tour-de-Sock” (not local) – I’ve registered and debating if I want to knit the crazy “warm up” pattern.
  • Camp NaNoWrimo in July.
  • I “restarted” my novel idea. Ready in time for Camp in July?
  • Doctor appointments. Doctor appointments. Doctor appointments.
  • Movies! Haven’t seen Solo yet. Looking forward to Ocean’s 8. Something else too. Deadpool 2 is awesome. Go see it if you haven’t.
  • Learning more about Borderline Personality Disorder and schedule testing. It’s an answer for a lot of things and I want answers, not excuses.
  • Computer games. I think it’s time to continue more of the larger quest lines in Fallout 4.
  • More computer games. Started playing Hearthstone and Eternal. Do I want to read about Hearthstone deck building?
  • Keeping the potted plants. The pepper plants need repotted into bigger pots but it’s *hot* outside. Highs in the 90s, daily.

What’s something interesting going on for you?

My Mayo Clinic Experience

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?

Depression

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
  • Hypersomnia
  • Overeating
  • 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.

My advice for dealing with chronic thrush

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.

 

Beginner’s Guide to Histamine Intolerance

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!

5. Chris Kresser also has a site with regular blog posts and a ton of information about more than just histamine intolerance. You’ll note he has been studying and teaching for awhile.

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.