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.
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.
Not all catnip filled toys are created equally. We’ve tried quite a few brands and shapes. There’s one specific toy we were introduced to when we adopted Rey and Finn almost 2 years ago. It’s the only catnip toy worth it as far as we are concerned (we includes the cats here.)
Two of our cats will literally tear these open to get at the catnip.
You can find these on amazon dot com, chewy dot com and in pet stores. They are $5 to $6 each. Yes, that seems expensive, but trust me, it’s worth it.
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 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.
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.
Last year I didn’t go because of how much yarn I purchased in 2016. I almost didn’t go this year except that the small businesses who attend conventions/shows/fests like this, usually have some kind of limited supply thing. This year, instead of posting a bunch of random pictures on social media I decided to write up a blog post! This means I’m adding project information too. Side note: I recommend attending something like this with a plan.
Obligatory? picture of the pamphlet which includes information the classes I can’t attend because it’s too far from home and I’d have too much issues with pain.
Some more bags that I probably don’t need but look at the designs!!!! The first is from Diana Couture. I’m definitely a fan. The little red bag is by Grace’s Cases. I happened to buy one of her bags online and then accidentally learned she was at the show. If you like smooth tops to your project bags, check out her sacks.
That little baby zipper bag is for stitch markers and it would work for coins too.
(Also from Grace’s Cases.) I plan to use this teal gradient set for some sort of crescent shaped shawl. Unfamiliar with the yarn and can’t remember where I got it besides a place out of Colorado, but it filled the hole in my stash for a nice single color gradient.
And some self striping yarn from Brazen Stitchery. Socks or mitts, undecided for now.
And some specific planned projects:
This pair of yarn carnival on the left is a gray and sorta mother of pearl and I plan to make this shawl out of it. The pair of yarn carnival on the left is for a color work cowl. I started a color work scarf and it blew up my brain after the first row. I’m hoping the cowl will be some good learning. The purple will be the dragon.
And then I made 2 sets of half skeins from Lazy Cat Yarns for some smaller striped shawls. (How cool is half skeins of fingering weight? Right?) One is for Milky Way and one is for Intergalactic.
And I’ll end with the single skeins I bought. The first one is inspired by blue bonnet flowers and will be paired with simple black to make this shawl. It’s by Destination Yarns and it’s smooshy!
This next skein is by Leon Alexander and the picture doesn’t do it justice. Don’t miss the green in there. I’m currently trying it out in this zig zaggy shawl scarf thing. Their yarn is amazing and bright.
And last, a yarn that’s new to me and a color I usually don’t go for. It hasn’t told me what it wants to be when it grows up. They had so many different colors and I hope they update their online store on a regular basis. I must keep an eye.
And then two weeks after we were at DFW Fiberfest I bought some yarn from yarn dot com to finish out for a sweater. So many projects, so little time.
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
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.
For my records, an attempt to stay in control of my brain, and anyone who wants to follow my super exciting life:
My last infusion was August 30, 2017 and yesterday afternoon – September 3, 2017 – symptoms started coming back. Took about 4 days. Last night my fitbit showed less than 10 minutes of deep sleep. I’ve been up to go to the bathroom 5 times in 3 hours? I did eat/drink a few things high in sugar but I didn’t do anything *crazy* …. I wonder if I can manage diflucan despite the red 40 since I managed the mycamine despite the histamine reaction. Clearly the 3 weeks of antifungal infusions were step 1. There’s no other option I can think of and live with at the moment. I’m going to double both my probiotics. I remembered last night when laying awake wishing I could sleep that my doctor recommended increasing the Prescript-Assist probiotics. I also made the connection that the problems I started having after 2-3 weeks of new probiotics was die off. I discovered the term for die off is Herxheimer reaction. I’ve also learned there exists a powder for suspension form of diflucan.
abdominal pain, bloating, constipation
anxiety and depression (worsened by the insomnia of course)
eye pain (WTF on top of WTF)
oral thrush – coating roof of my mouth too
yeast residue in my belly button (You know because it’s white, pasty and smells sour.)
hot flashes and night sweats, flushing yesterday was probably related too
loss of appetite
I have no idea if any of these symptoms are also Herxheimer reaction but I know I’ve definitely got yeast symptoms. I desperately need to know what’s going on. So I’ll be doubling both of my probiotics today, possibly taking one reglan per day for a while, calling my doctor tomorrow and hopefully not crying, and hope this tension headache doesn’t get worse. I just don’t have the words.