Too sick to be poisoned

Sorry for my lengthy silence. And I warn you there will probably be more gaps through the year. I haven’t forgotten, I haven’t gone away. But life is rather unkind, and I will need times to step away and live through the storms.

Today the storm feels quieter. Why? My husband was too sick for this round of chemo. This seems like it would be bad news, but as I’ve been monitoring his symptoms the last few months I have found that chemo is taking waaaaayyy too much out of him. When the symptoms were so bad he became suicidal I broke. He needed to discuss options with his doctors. The treatment was doing more harm than good. I went with him to his appointment this time and watched as he nonchalantly described the basics of his symptoms.



“In pain”

Dr took note. Anything else?

“Yes!” I yelled. “So tired we’re lucky if he can stay awake long enough to watch a movie with his children. So cold our house is heated to an extreme and he still can’t leave his numerous blankets. So much pain he can’t do simple tasks. He is stumbling. He is struggling to breath. He is loosing his eye sight. He becomes so discouraged that he begins to feel suicidal. He has NO QUALITY OF LIFE. This is not okay!”

The Dr looked at me in shock for a moment then pushed hubby for more details. Apparently unaware that he can shrug off such severe symptoms so easily when discussing them in these appointments. Turns out the symptoms have become severe enough that they did not feel it medically safe to give him chemo this week. His body needs a break. He did his other cancer treatment and they adjusted some meds. Moving forward they will be on speaker phone with me for all appointment since apparently hubby doesn’t speak up, and they don’t push for enough details.

I should be mad, stressed, scared. And I am. But today I am mostly happy that I get to see my husband again. The med adjustment and quick chemo break did the trick. He is him today. I have not seen him like this in months. Enough energy to play a board game. A slightly higher appetite. Greater mental focus. And more laughter than I’ve heard in ages. He was too sick for chemo and so for this short moment I have my husband back. I’ve missed him so much.

Please always be honest with your doctors. Describe the severity of your symptoms. You are not complaining, you are giving the necessary information. The treatment could have killed him faster than the cancer because he didn’t want to complain. I complained for him and now his body gets to heal for a couple weeks and regain some strength. No matter how short this time between rounds, for today I will dwell in the joy of having my husband again.

A welcome turn

Stepped into the same ER as we did 5 months ago. Got brought back just as quickly as before when the triage nurse saw his level of pain. Had the same ER doctor come in to the room. And as she stepped in she stopped. I’ve treated you before, haven’t I? He looked and said yes, that she was the one who found his cancer. She asked prognosis, current symptoms, and immediately put in orders for pain meds and a CT. I saw the same concern on her face as the last time when she ordered pain meds and a CT. Last time for his colon where she found multiple large masses, this time for his head where he was having the severe pain. It was all so similar, and so frightening.

I vividly remember 5 months ago, sitting in the chair next to hubby’s ER bed while they hook up his IV. Waiting in that chair while they take him for scans. And finally seeing the doctor return with results, closing the door I didn’t know the room had before closing the curtain usually used as a door and turning to us to explain what she found. That time led to a week at the hospital, a cancer diagnosis, explanation of stage 4, massive surgery, and a rollercoaster of pain and emotion that we still face.

Today I sat in that chair next to hubby’s ER bed while they hooked up his IV. Waited in that chair while the took him for scans. And then sat there anxiously staring at the door you wouldn’t know is there unless you’ve seen them use it. Desperately wishing it to remain open. I couldn’t handle going down this road again so soon. Even if I could handle it, I don’t know if he can. His mind is breaking.

Last time we sat through unspoken fear of colon cancer, this time the unspoken fear of it spreading to the brain. The doctor came back but the door remained open. Scans are clean, labs look great (considering). But she still admitted him. She wants another doctor to take a look, and beyond that just to give his body a rest. She is promising pain meds, anti nausea meds, and anti anxiety meds. And as the first batch went in his IV I slowly saw him sink into a gentle sleep. He is calm and resting, his pain managed, and when last I left his room he was keeping down what he has decided is the most delicious cranberry juice. The first thing he’s kept down in days.

It’s likely that the symptoms are just from the chemo, but it hit so hard and wasn’t letting up that we needed to get him in. What has me most concerned is the occasional moments of confusion or lapses in memory. It’s not normal for him, and started before these other symptoms. So they’re looking into it. I’m relieved that the brain scans are clean, and that he will be able to rest pain free even if just for tonight. This trip to the hospital had a much better turn out then last time. But I feel it will continue to loom over us every time we have these ups and downs. But right now I will sleep easy knowing he is safe. And tomorrow I will hopefully be able to take him home.

Depression and Cancer

I never liked to hear that depression is like a cancer of the mind. I am a mental health advocate and a firm believer that mental illness is in fact an illness, not just moods. I never corrected someone for comparing depression to cancer as I know how hard it is to describe to those who haven’t had it. But I simply did not understand the link. Cancer is cancer, depression is depression, right? Well today I got it. I suddenly understood the link.

Hubby is fighting stage 4 cancer right now. He went to the doctor this morning who said “you don’t seem yourself today, are you feeling alright?” He said no, and tried to explain but couldn’t quite put it into words. They did see that he was dehydrated so got him hooked up to some fluids. They tried to talk and help while he was at the office. But eventually he needed to go home.

Worried about why the doctor kept him late I came home early from work and found him half asleep in bed. I asked how he felt. He said he didn’t feel well, but wasn’t sure why. He described his day. That the fluids didn’t really help him feel better but it’s good he got them. That he kind of just doesn’t want to move. I asked “is it kind of like the exhaustion and aches that come from the flu but without the actual flu?” Kind of, that sounds a little similar. “Does it overwhelm your body but dull your mind?” Yeah. And I just want to sleep. I don’t want to keep getting up and facing these things. I just want to lay here. I don’t feel good. “Honey, that’s depression.”

As the husband of someone with Borderline he has heard me say so many times “I physically feel my emotions.” But I don’t think that really registered until today, when I put a name to his ache. I explained that it becomes overwhelming and takes over. That he needs to start going to therapy and get back on an antidepressant. He wasn’t quite convinced, though I could tell he was listening. So I went on.

Depression starts in the brain, your mind feels it and starts spreading it. What started as some chemicals in one part of your body is spreading to other parts and making them sick. If not treated it will not just go away. It will spread through you and overwhelm your body just as your tumors are. And that’s when it hit me. Depression is like cancer.

Depression starts in one place. It begins mild but is often ignored which allows it to grow. Untreated it will continue to grow and spread until it overwhelms your body and drastically decreases your quality of life. My husband had mild symptoms of cancer that were ignored. Untreated the cancer cells continued to grow and spread until it was discovered that he had tumors covering his colon, liver, and lungs. The cancer overwhelmed his body and drastically decreased his quality of life. But cancer kills, depression doesn’t, right? Wrong. If he doesn’t get treatment and this depression continues to grow it is possible it can take his life before the cancer has a chance to. And that scares me more than anything.

I get it now. I get the comparison. I likely still won’t use this comparison, but not because I don’t get it. As someone who has faced severe depression and not understood the comparison, I can only imagine how hard it would be for someone who has never faced depression to comprehend the link here. So I’ll stick with other variations to try to explain what depression is, and what it does. But today I gained new insight, and better understood others in the way they describe things. And for that I am glad. I’m happy to better understand them and the intelligence and logic behind their explanation. And I’m glad to have enough insight to help hubby get the treatment he needs for mind and body.

That is the worst idea you have had

When your therapist of 3 years, the women who has seen you through panic attacks, self harm, suicidal ideation, and lord knows what else says “that is the worst idea you have had.” You should probably listen 😬

So what was this terrible idea? I went off my meds. That may not seem like much, but remember all the lovely things mentioned in the first sentence? That was during a period of time I spent months arguing with her that I didn’t need medication. Followed by a month of trying to stabilize on my new medications, some of that time spent in a psych hospital. She helped me understand that I need meds, helped me find a good psychiatrist after I had had so many bad ones in the past, she helped keep me safe from myself while I worked to find the right blend, and she helped me understand that the meds bring me to a baseline where I can then work on my self care to become healthy and stable beyond that point.

Recently someone at the office started telling everyone that I don’t care about things. Suddenly rumors where flying around that I am heartless, that I don’t care about my work or my team. This started spreading out of control until someone started trying to tell others I should be fired so they can have someone that actually cares. As someone with Borderline Personality Disorder I’d never been told I don’t care. I’m told I care too much, I care when I shouldn’t, I am too emotional, that I need to shut it off. My whole world shifted as I began to hear these strange rumors and I panicked.

I knew the “issue” was that I was stable, and that I wear an emotional mask on top of that. I also knew that I wasn’t going to lower that mask, so the only way to show emotions through it was to stop being stable. So for the next two weeks I cut my antidepressant and mood stabilizer dosages in half. When I didn’t end up completely crazy after that I just stopped taking them altogether. I went against my better judgement. I went against the advice I give others to never adjust your meds without first speaking to your doctor. I went against the advice I give myself, to talk over decisions I know are probably wrong with my therapist before doing stupid things. I panicked, so I ignored everything but the rumors at the office and I screwed myself up worse.

So at last Monday’s appointment we discussed the issues I’m going through right now, and eventually got to the dreaded question:

“How are your meds working?”

“I’m not taking them.”

Pause… “When did you last see your Psychiatrist?”

“About 3 or 4 months ago?”

“So she doesn’t know you stopped taking them?”


“How long have you been off your meds?”

“A week, I was on half dose for 2 weeks before that.”

Pause…. “Why?”

“They were making me stable so people thought I didn’t care. I needed stronger emotions at work or everyone would hate me!”

Longer pause (probably an effort to regain the peace she had found while meditating that morning before I had come in and ruined it) “That… that is the worst idea you have had.”

“They want to fire me!”

“You can’t just stop your meds.”

“I can’t be stable right now, they hate me at work!”

“Do you hear yourself?”

“Yes. But I don’t care. I need my job.”

“You are more important than just a job. You need to be stable for you and your husband and your kids. You need to be on your meds.”

So I’m back on my meds. I’m feeling better, more clear, more calm. But I still have moments of desperate desire to be off them. To let my crazy take control. I don’t know where this desire is coming from exactly, I don’t think it is just from work though that was certainly a catalyst. But something in me says I shouldn’t be stable. And this is a new fight for me, one I don’t know how to face.

When I was young and refused to acknowledge depression as a medical condition, or that I had anything more than seasonal depression, I would refuse meds or go off of them because I shouldn’t need them. I’ve fought that battle and moved beyond it. I’ve learned to ignore the occasional thoughts my brain throws at me trying to convince me of that lie. But this is a new lie. My mind says the meds are working, and they’re needed, but that I should stop anyway. I recognize the truth of my illness and my treatment, and something is telling me not to be treated. To let the symptoms take over. I don’t know what that is. I don’t know how to fight it. Have any of you fought that before? The idea that you can be stable but shouldn’t?

Sometimes you’re paranoid for a reason

Just over a year ago I posted this. A description of my fears into the void in hopes of easing my own mind. My husbands blood work came back with some abnormalities. He was doing monthly blood work at the time to keep an eye on his response to a new diabetic medication, so to have abnormalities show up suddenly within a month was concerning to say the least. His GP referred him to a hematologist, whom we quickly discovered was actually an Oncologist. Fears grew. He was also scheduled for some additional tests and scans. I continued to “accidentally” find my way to WebMD through google searches, and continued to find he had symptoms of a few serious illnesses including colon cancer. I kept reminding myself that if we diagnosed purely through WebMD we’d all be diagnosed with cancer. So I pushed back my fear.

Day of the appointment came, tests results from the few they did were available, and the Hematologist/Oncologist showed no concern. “It’s just Anemia, the other abnormalities are from the lack of iron. Sometimes this pops up suddenly, don’t be worried we just need to get you on iron supplements.” He went on iron and followed up exactly on schedule. No change. “Your body just doesn’t absorb it well. We’ll put you on a higher dosage.” The next follow up appointment showed the iron in his blood went down. “Don’t worry, we’ll get you in for an iron infusion. It’ll take care of it and you’ll feel much better.”

So hubby walks into the office the day of the infusion and they explain that it’ll cost $5000. He asks what kind of payment plans we can do and they say none. The amount must be paid in full before any treatment is done. He continues to try to work with them as we don’t have the money and the doctor had said he needed this. “Sorry, but we don’t do these infusions until paid in full. We’ll go ahead and cancel the appointment and reschedule for when you are ready.” The doctors office continued to call for a while to explain he needed to go in for the infusion. Once he did they would schedule his follow up with the Hematologist. He stopped responding to the calls after a while as they still wouldn’t do a payment plan. He continued to work with his GP, continued to do blood work, always was honest when describing health and symptoms. The GP never seemed any more concerned than the Hematologist/Oncologist, so we trusted them.

April of this year his GP bumped up his iron supplements again as he still wasn’t absorbing it and a week later the occasional stomach pains he’d had for so long grew more severe. After a year of unspoken fear and trusting the doctors instead of my instincts I finally got him to agree to go to the ER. He had been unable to move for 3 days because of the pain of what he assumed was iron poisoning from the increase. The admitting nurse said “well, that could be it, but they’ll run some tests I’m sure to determine the cause.” She looked concerned. The ER doctor listened to his symptoms and asked questions finally asking “And your doctor hasn’t looked into this further?” She got him in for a CT scan. The scans showed dark spots on his colon. She said he would be admitted for further testing, but until they get the results from a biopsy there is still room to think positive. She too looked concerned.

Within 5 minutes of getting to his hospital room he had a gastroenterologist, hospital GP, and his previously seen hematologist/Oncologist standing in the room. They all looked concerned. As the first two spoke on what tests they would do and then left to go schedule them the Oncologist stayed and said “this is why you were supposed to do the iron infusion. So you wouldn’t end up in the hospital.”

Five days, two biopsies, three iron infusions, two blood infusions, and one major surgery later we had answers. Colon cancer, stage 4. A year ago I feared his symptoms were colon cancer or similar, but I choose to trust the doctors instead of speaking my fears. He now has no chance of remission from one of the most treatable cancers because it took too long to diagnose. It is so easy to beat myself up for not pushing for more tests, but that takes energy away from a family that needs me. It is even easier to be furious with the doctor, but he doesn’t care so why bother. Instead I focus on treatment, on hope that doesn’t exist, on taking care of my two young children while my husband lies in bed suffering the symptoms of cancer, surgery, and chemo.

But I learned from my paranoia mistake. The Oncologist wasn’t answering our questions, and was ignoring other symptoms. I didn’t ignore my instincts this time, I changed doctors. The new oncologist had the same reaction as the ER doctor. “He didn’t look into these new symptoms? He didn’t run more tests after your diagnosis? He started chemo that soon?” Turns out the original Oncologist did not preform standard scans to find a baseline which would show the effectiveness of chemo, he started chemo two weeks sooner than he should have after surgery, and he ignored pain that showed possible signs of spread to the bones and spots showing possible signs of spread to the lungs. He also omitted information on a more cost effective way to do chemo that has the same results.

Hubby got all the scans done with the new Oncologist and he has tumors covering his liver and lungs, but fortunately none in his bones. He now has a baseline and while they can’t switch chemo types yet they will with his next round to save him both time and money. He now has a pain specialist, a new GP, and a psychologist who all partner with his new oncologist. He now has the treatment he needs. Too late because of my ignoring my instincts, but hopefully soon enough to elongate his life.

WebMD won’t always be right. It’s usually not cancer. But it is better to ask and push for tests. Be sure to rule it out before assuming the doctor is always right. Trust your instincts even if they turn out wrong. I learned a hard lesson and my husband will now pay the price for that. Beating myself up steals energy from my family but secretly I may never forgive myself. Don’t make the same mistake I did.

Questions about your boss with BPD?

From day one the most common search term for this site has been “my boss has borderline personality disorder.” That hasn’t changed. In fact it’s become even more frequent. I spoke on this once before, but am not sure it actually answers anything you want to know. If you are coming to this blog trying to figure out how to work with a boss who may have BPD please feel free to post a question in the comments section. I will do my best to answer.

As the Supreme Commander ruling over the border between the Unicorn and Fairy Kingdoms, I approve the release of knowledge

I may be a little too caffeinated to write titles. Honestly last week was incredibly awful and I’m past the point of stress to the point of abnormally strange (I choose to believe there is a normally strange). 

Anyhoo, something I was going to post last week and didn’t get around to was about resources. I was contacted by someone from who asked if I would share the site as a resource for those dealing with addiction. Part of the site is specific to the treatment of those with co-occurring disorders which is something that I fully understand the difficulty of treating. I reviewed the site and found a great deal of knowledge and understanding and so agreed to share. That being said, I have not had experience with their specific treatment centers so cannot specifically recommend going to them. I can only use this as a reminder that treatment is available, resources are out there, and you are worth the time of a great treatment team.

The link for the co-occurring disorders section is

I did some research and found a site where people can post reviews of their experience at one of the treatment facilities from this site. You can see the reviews here 

If you are struggling with any form of mental illness, including addiction, and have hit a point where you are seeing dead-ends in your daily life, then please seek treatment. Whether through this link, local resources, or referrals from those you trust. As the Supreme Commander ruling over the border between the Unicorn and Fairy Kingdoms, I proclaim you worthy of all wonderful things in this life. And I hope that you and those wonderful things meet along your journey to health.

If you have found great treatment centers, websites, or other resources in your own journey, please feel free to post them in the comments. Share your experience for others seeking what you found. I’ll start. 

I found my therapist through my companies employee assistance program, a program that many companies provide to employees to help them seek life resources. I highly recommend this resource to anyone who’s company offers it. It is free of charge and everything is done by an outside source so no one within your own company knows that you have reached out to them, it is completely confidential. So what is a great resource you have used? 

Coping with BPD – Dual (quadruple?) Diagnosis 

Borderline personality disorder can be hard to diagnose. It can be even harder to diagnose when their are co-occurring disorders. This can lead to a lot of stress when you’re trying to get treatment and no one you see can seem to agree on what you have.

I’ve mentioned before that along with BPD I have OCD, and agoraphobia. What I haven’t said is that I may also be Bipolar. I was diagnosed bipolar before borderline, and none of the treatments seemed to help so I gave up, became a workaholic, and let my OCD overshadow all else. When I finally went back to treatment I was relieved to hear “borderline personality disorder”, not because I want it, not because I didn’t see the difficulties, but because it fit. My diagnosis fit and I could finally get treatment.

After sometime with my current therapist she mentioned (though never pushed) the possibility of co-occurring disorders. That I may have a dual diagnosis of Borderline and Bipolar. I shrugged it off and ignored her. We moved on to guided meditation. All was happy in the land. 

My med adjustment last month is helping more than expected with my BPD. What I’m finding is that instead of living in my constantly overwhelmed brain of mismatched emotional torment, I am reacting like a real human to real stressors. But then those stressors became a lot of stressors, and I went manic.

I am in a manic phase of hyper productivity, jitteriness, and easily agitated. I saw my therapist this morning and she saw it immediately in the way I spoke. She mentioned that maybe we should do some grounding meditative exercises to which I took a deep breath, said “I think you may be right about the dual diagnosis, I think I’m in a manic phase” and then went back to jittery agitated talking before she finally slowed me down enough to do some breathing exercises. 

My frustration with co-occurring disorders is that it can be difficult to know what is going on with you, and where to focus your energy. There are times I feel like I’m trying to make sense of my brain just as I did before any diagnosis. So here is how I’m learning to distinguish between my 4 diagnoses. 

  1. Am I looking for balance? If yes, it is definitely OCD. The rest of my brain is too scattery to care about balance (which is why it so desperately needs it)
  2. If I think of picking something up from the grocery store, can I still breath? No? Okay, agoraphobia is taking over.
  3. Are my emotions extreme? Duh! But for how long? 2+ weeks usually means it’s my Bipolar, less than 2 weeks means it’s borderline.
  4. Another distinguishing factor between those two: Bipolar has 2 set extremes. High and low. Borderline typically combines them for me. I can go through highs, lows, and every extreme in between in a matter of hours (sometimes minutes!), I feel numerous extremes at once, not just manic or just depressed.

To be clear, I don’t mean “oh it’s just depression, or just mania” as though it is less than my BPD feelings. That’s not the case. I simply mean it is a very distinct extreme. It gives me set feelings each time I face it, and what those are do not change each time it comes. Again, this applies to me and my journey with my screwed up brain. It could look different for you and that’s fine. 

I am trying to compile notes in my journal to see if I can find ways of treating the necessary disorder as it flares so I can better fine tune my self care. I’ll keep you posted.

New meds! (Again)

So if you’ve been following the blog the last few weeks you’d know I’ve been on a downward spiral since my last med adjustment. So the psych chatted with me on other meds, which ones she was considering, and why. She is always really good about explaining things, and understands my bodies genetic dislike of meds. I love her!

Anyhoo, the new stuff is starting to take affect and I’m doing well. I’ll be posting more normally soon, but for now just wanted to remind y’all… no matter how bad it gets IT IS TEMPORARY. Yes I have wounds healing and likely going to scar. Yes I’m dealing with the emotional aftermath of suicidal thoughts. Yes I have some headaches through this adjustment period. Yes my employees have been wondering why I’ve been acting differently the last month with a sudden change again in mood the last few days. Working through change is hard, working through mental illness is hard, but it is worth it.

If you are currently struggling please stick with your treatment (or get treatment if you haven’t yet) and keep telling yourself that this is temporary. Even if you don’t believe it yet, say it. It is temporary. You’ll get through it. I promise.

Why I don’t believe in “praying through” mental illness

I remember hearing a story in Sunday School as a kid. It went something like this…

A man was drowning in the middle of the ocean. He cried out to God “Save me! Please save me!” A boat came by and the captain called out “come aboard, I’ll bring you to safety” to which the man replied “No. My God will save me.”

The man called out again “God! Please Save! Send me a miracle!” A large ship came by and saw the man. The people on the ship called to him “come aboard! We’ll bring you to safety!” to which the man replied “No. My God will save me.”

The man called out a third time “God! Please send me a miracle! Please save me Lord!” And then a helicopter flew over. A ladder was lowered for the man and he heard from the helicopter “climb up! We’ll bring you to safety!” But once again the man responded “No. My God will save me.”

The man drowned and upon entering heaven asked “God, why didn’t you save me?” And God answered “I sent you a boat, I sent you a ship, I even sent you a helicopter. Why wouldn’t you take them?”

My sister reminds me of this story. She has more faith than anyone I’ve met. She spends every morning in prayer. She spends as much time as possible helping those in need through volunteer work as she firmly believes in sharing Gods love with everyone. But secretly she struggles with depression. And because depression is an illness based on brain chemicals instead of more obvious things like bones, nerves, or muscles, she refuses treatment and prays through. 

My sister has had 3 suicide attempts. Still she refuses treatment. She struggles (as so many of us with mental illness do) to understand that it is a disease. 

To those who tell us we simply need God, we need more faith, we need to pray through, let me ask you. If you believe God has given everyone a purpose in life, that he gives people the passion, skills, and intellegence they need to follow that path, then why would you deny those who use that passion and intelligence in the field of Psychiatry? Why should those of us with mental illness ignore the psychiatrists, therapists, and medications that God made possible on this earth? Why must we ignore necessary treatment for a medical problem in hopes of seeing a more “obvious” style of miracle?

For those of you choosing faith instead of treatment as my sister does, stop. God is not asking you to do that. Don’t ignore therapy and psychiatry available to you. Don’t let the boat, the ship, and the helicopter pass. Don’t drown in your depression to prove your faith.