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.

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/

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.

The yeast is coming back

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.

Returning symptoms:

  1. neuropathy
  2. back pain
  3. abdominal pain, bloating, constipation
  4. bladder pain/etc.
  5. insomnia
  6. anxiety and depression (worsened by the insomnia of course)
  7. eye pain (WTF on top of WTF)
  8. oral thrush – coating roof of my mouth too
  9. yeast residue in my belly button (You know because it’s white, pasty and smells sour.)
  10. hot flashes and night sweats, flushing yesterday was probably related too
  11. 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.

Life is intense: Another medical post

Earlier today I was hit with a realization, a moment of clarity if you will. I realized how much I have gone through in — less than a month — and actually had to sit down under the weight of it all. And that was only in terms of the doctor appointments, procedures, and tests I’ve had to deal with. It didn’t include fun things like brunch with a bunch of good friends or the wonders of FaceTime.

All within the last few weeks I’ve gone through multiple GI tests including an endoscopy, a multiple day “study” to check my stomach pH and see if I really am having acid reflux, and a gastric emptying study. All of these provided useful but slightly conflicting information. I have collected yet another diagnosis. I don’t want more diagnoses but it seems, lately anyways, that answers bring diagnoses.

Because of my (new) gastroparesis (a word that my browser does not recognize), I have to adjust my diet again. I have to relearn how to eat. In some ways I started to feel better rather quickly once I started adjusting my diet. However, there’s a pretty steep learning curve to relearning how to eat at the age of 34. There are now more foods I am supposed to avoid. Before this I had a very restricted diet because of my allergies and intolerances. Now, I can’t think about the restrictions or I want to scream.

But that’s not all. I also went through an EMG “of my upper extremities” which just means my arms had electrodes attached to muscle groups and then needles poked in those muscle groups. Thankfully my doctor who performed this test is very gentle. Then yesterday I spent five hours with a psychologist going through neuropsychology testing. Five hours. You cannot even imagine the level of brain dead I was by the time I got home. The testing was mentally exhausting and also depressing when I stopped to think about all the times I struggled or ran into a (metaphorical) brick wall. Then there was also the back and forth to my GP doctor’s office for an infection. Because when you’re sick all the time, getting “normal sick” is even more difficult. And thankfully the allergic reaction to that antibiotic was not anaphylaxis that landed me in the ER. (Been there, done that, already have the tshirt.)

Yesterday, I decided any time I have to fill in the “occupation” blank on a doctor’s forms I’m going to say “professional patient.” It’s exhausting keeping up with all my doctors, appointments, and keeping my own medical records up to date. I need to find a way to make this a job where I can also provide doctors with feedback of their office and procedures.

I’m scared that I’m going to still load more diagnoses on top of everything else but I’m trying very hard to stop myself from falling into that deadly cycle of thinking. I cannot get stuck thinking like that. Still though, I wonder what a “normal healthy” person would do if suddenly faced with the amount of doctors and appointments that I’ve been dealing with. Every appointment meant sitting (or standing or pacing) in a waiting room and having little control over a number of events. You think it’s bad to sit waiting for a doctor for 15 minutes? Fifteen minutes is actually good! You think it’s annoying to have to go to the doctor? Try having two different five hour tests in a two week time period.

Sometimes I wonder how I deal with it all. I know my friends help so very much. My cats and my husband help more than I can really fathom…. but I also spend a great deal of time alone. Anxiety and depression continue to be very real and scary problems for me. I have no idea when “things” will “calm down” again. At this point in 2015 I’m happy I haven’t been to the ER (yet) this year. I really hope I can find some kind of normal in the next few months. Normal is having nothing out of the ordinary (health wise) happening in at least 2-3 months. That means nothing that I don’t already have a plan for coping with.

I’ve finally stopped asking “Why me?” but now I find myself asking “Don’t I have enough already?” It’s intense and overwhelming and the average person probably cannot even begin to imagine let alone actually understand what it’s like to live as someone with chronic disease and chronic pain.

Control

I don’t have a job and cannot have much income at all for the next three years if I want my mountain of student loans to be discharged for disability. I’m not able to fill my days with volunteering since I’m not working because I do not have the physical or mental energy I once had a few years ago. I also have to be aware of what/who I’m in contact with. If I get sick from a sick person, I could be sick for a very long time.

I have to plan out a lot of my activities – usually everything outside of the house – so that I still have energy for anything afterward. There is very little safe and healthy for me to eat outside of food that has been prepared at home. The one thing I know I can get from any convenience store that is safe for me is potato chips…. except right now while this acid reflux is really bad. My diet is very restricted and there are few food or drink “indulgences” that I get to partake in. In the morning, I usually eat so I can take my medicine, not because I’m hungry.

A few weeks ago I received my (first) denial letter for my SSDI application. (Apparently the DoE can discharge over $110,000 in student loan debt easier than Social Security can give out monthly checks.)

I knit, peruse the internet, or play ithing games, almost every day. I feed the cats. I remember my regular meals but sometimes forget to eat in between those times. I have problems with anxiety and depression, in part because of my health problems and in part because of all the bad experiences I’ve had in medical settings….and in part because I feel like I have very little control. On bad days I do little more than stare at my ithing, watch Netflix, eat and nap. On good days I can handle computer games and more than one or two household chores. Sometimes it’ll be two weeks before I leave the house besides for the grocery store or a doctor appointment. Going to the movies is really hard on my body and brain because of sitting still for so long and mentally processing everything from the movie. I think that must be why I like re-watching movies/tv shows.

When I was a grad student I wanted to make my life into something meaningful. I wanted to be able to help people by working in a non-profit organization. I can’t do that. It’s not possible. Someone/something/the universe/the fates/a higher power/my genes took that away from me. What I live now doesn’t feel very meaningful.

Somehow I need to find a way to focus on the little things I do have control over and one big thing I do have control. I choose to continue to fight to the dark thoughts that tell me it would be easier just to give up and stop it all. Except, that living shouldn’t be a battle.

Motions

This probably applies to lots of things so that’s why I’m throwing it up in a blog post. Right now, it applies to my life as a full time patient living along side multiple chronic diseases. Side note: People with chronic health diseases often have anxiety and or depression.

 

Going through the motions

The alarm starts playing music and your eyes crack open.
Crawl out of bed in the morning.
Shuffle to the bathroom.
Stumble to the kitchen.
Collect the foods necessary to build a breakfast.
See the husband off to work.
Now you’re alone with the cats.
Eat breakfast not because you’re hungry,
but because you need to take your meds.
Check your calendar. When is the next doctor appointment?
Nothing today. Breathe a sigh of relief.
Shuffle back to the bathroom –
take the rest of your meds.
Is it a bad day?
Then sit on the couch wrapped in a blanket, staring at Netflix.
Is it a better day? Have your meds kicked in yet?
Then find a book, or knit a sock.
Around noon, gather foods again.
Eat again. Maybe you’re hungry this time.
Check Twitter. Wonder how the little people inside your phone are fairing.
After lunch?
Maybe you can wash dishes or collect laundry from the bedroom closet.
Maybe you can care for the cats.
Maybe you can knit some more.
But maybe you’ll need to nap instead.
Check the freezer. Make plans for dinner.
Wonder where the day has gone. Check Twitter again.
Have a snack. Chocolate sounds good.
Don’t forget any meds.
Before you know it, the day is mostly gone. Your husband is finally home.
Dinner time.
Your husband cooks. Some days dinner is the best thing.
After dinner?
If it’s a better day maybe there will be some game playing, or some conversation.
If it’s a bad day, there won’t be much of anything. You’d be sad about the bad days if you could think through the fog.
Then it’s time for more meds.
Then it’s time for bedtime, and more meds.
Finally, you can go back to bed again.
When will it be easier? Maybe tomorrow it will be easier. Maybe tomorrow is finally the day.

There’s no way to know.

Tomorrow you go through the motions all over again.