Centerstone Is Screwing Me Over

I’m having a ridiculous time dealing with my med provider right now. I have had trouble with them in the past, but nothing quite this bad.

The place I go is called Centerstone and I’ve been going there for 8 years. After college I went to the city health department for further treatment for depression and they sent me to Centerstone. I was uninsured and Centerstone is not-for-profit. They have programs for people with no or low income to help them get medication and/or therapy.

When I got my current job in 2013 and got insurance I considered finding another med provider but I was seeing a psychiatrist for med maintenance at Centerstone that I really trusted. Unfortunately (for me), he took another job elsewhere and I saw him for the last time in February of this year.

In February when I scheduled my follow-up med maintenance appointment, I was told they weren’t sure who I would be seeing because they were currently understaffed. I had no issues with that.

In mid April I was in a partial hospitalization program. My meds were adjusted during my time there. My next med appointment at Centerstone had been scheduled for May 7 (a Saturday since their patient load is so high right now).

I saw a nurse practitioner on May 7. She made some med changes because I was experiencing a lot of anxiety. One of the changes was adding Effexor. At then end of the appointment she told me that someone would call me about scheduling my next med appointment. She asked if I would be willing to be seen at one of their other offices (both of which are about 45 minutes from my city). I said of course.

When August 25 came and no one from Centerstone had called, I called to schedule an appointment. I told them I needed a medication maintenance appointment. They told me I’d be seeing a woman….let’s call her Sue (not her real name). The appointment was set up for September 13 at 5.

So I went to the appointment and Sue called me back. As we were walking to her office she asked, “So what brings you in today?” I told her that I need med maintenance since I was last there in May and am on my last refills of meds. Sue said she doesn’t know why I was scheduled with her because she’s a therapist, not a med provider.

I was immediately agitated. Running out of meds is a horrible thing. I don’t need to explain that to anyone who takes medication. Also, I had learned two days before that starting November 1 I’d only be working on an as-needed basis at work instead of being full-time. So I was angry that I’d just paid $35 for an appointment that I didn’t want or need when I’m going to be broke in less than 2 months.

After looking through my account on the computer for a few minutes Sue learned that because I’d been hospitalized, I was not eligible to receive medication unless I saw a therapist first.

Okay, that might have made sense if they’d required me to see a therapist right after my hospitalization. But five months later? It’s not even relevant even more. And why  didn’t they let me know that was the rule before I was out of med refills??

I was annoyed but sucked it up and got through the appointment with Sue, who kept interrupting me and trying to finish my sentences, by the way. She also gaped (I’m not exaggerating) and shook her head when she saw the scars on my arm. Anyway, at the end of the appointment Sue told me to have them schedule me for another therapy appointment with her in 4-6 weeks. She told me that they wouldn’t be able to schedule me for a med appointment until someone changed my status to eligible for medication.

When I left I didn’t see anyone at the front desk and figured since it was technically after business hours I’d have to call back another day to schedule appointments.

Two days later, September 15, I called Centerstone and left a message with the medical secretary saying I need refills on my meds since I was scheduled for therapy instead of med maintenance. A few hours Sue called me. I missed the call because I was at work. I have to keep my phone on silent & not use it when I’m working with the kids. Sue left a message that said I couldn’t get refills or a med appointment until I scheduled another appointment with her.

Two business days went by before I called back. I shouldn’t have let it happen, but one of those days I had a horrible migraine and was in bed. The other day was really busy at work and I forgot to do it.

I called on September 20 and scheduled an appointment with Sue for October 13. When I said I needed a med appointment, the scheduling secretary told me she needed to check with someone else before scheduling me because my account was flagged. She put me on hold for a few minutes, then returned and said she’d have to call back. Twenty minutes later she called back and said I would be seeing Dr. Daniel (not his real name) but that he didn’t have anything available until November. I took the first available appointment on November 10. Then I told the secretary I needed to speak to someone about getting refills. She said she would put a note in my account that would prompt someone to call me about medication.

Later that afternoon (fortunately I’d gotten off work early that day and was able to answer my phone) I got a phone call from a guy at Centerstone I’ll call Ed. I told him I needed refills. He said they’ll probably just call in refills but that I’ll have to come in and pick up a paper script for Concerta since it’s a controlled substance. He told me he’d call back either that afternoon or the next morning to let me know when things were ready. I let him know that I can’t answer my phone at work but that leaving a message was fine. This has worked for me in the past and I assumed it would again.

Centerstone calls the next morning (September 21) and I miss it because I’m working with a kid. The voicemail says only, “This is the medical secretary at Centerstone. Our number is ____.” I called back and left a message with the medical secretary explaining that I need refills and that I can’t answer my phone at work so a voicemail with instructions would be helpful.

I told my supervisor that day that I was expecting a very important phone call from my doctor and would need to answer it if the call came. She said it wasn’t a problem, which was a relief.

I called and left another message with the medical secretary on September 22. I didn’t receive a call back on the 22nd or the 23rd.

Yesterday (the 26th) I called and left another message with the medical secretary saying that I was going to start getting physically ill from Effexor withdrawals soon if I didn’t get refills. At 1:10 pm Centerstone called back. It was the medical secretary and she was rude from the beginning. When I answered she asked, “Is this Cordelia?” I said yes and she said, “Look, they’ve called you four times so I need to verify your number.”

Okay, I missed two calls from them because of work, which I’d let them know was probably going to happen. I answered every other call. I don’t know why she insinuated that I had missed 4 calls or something. I gave her my number and told her that I let Ed know last week that I can’t answer the phone at work and that he’d told me someone would leave me a voicemail when it was time for me to pick up my scripts.

“No,” she snapped. “They won’t do anything. They won’t even call in refills until you talk to a nurse.”

“I talked to two people last week about needing refills.” I almost wailed it. I was getting desperate.

“Were either of them nurses?” she said like she was talking to a 4 year old.

“I don’t know. One was a woman who didn’t give her name and the other was a guy named Ed.”

“Fine, they’ll call you right back.” And she hung up.

I was pretty angry at that point. Regardless of my missing two calls, Centerstone is at fault. They have screwed up several times. 1) No one called between May and August to schedule a med maintenance appointment like I was told they would. 2) No one informed me that I had to see a therapist before being allowed to get more medication 3) When I called and asked for a med appointment, they scheduled me for therapy instead and didn’t tell me that. I showed up there thinking I was getting one thing and got something different instead. 4) They put me in the position of running out of medication. Providing medication is their job. They failed at that.

I was also pissed that the medical secretary was so rude to me. I’d missed two calls from them, yes, but I’d also made 4 calls to them that weren’t answered. Also, if I needed to talk to a nurse, why was she was the one who’d called me just then? And why was she the one who’d called me and left a message on the 21st? If she can’t do anything about my refills, what was the point of her calling me?

I kept my phone next to me for the rest of the afternoon. No one called back. I waited until 1:15 pm today and called again. I left a message saying that 24 hours earlier I’d been told someone would call me right back about refills. I said I just wanted to know what I had to do to get more meds, that I’d come to the office and sit in the waiting room until a nurse was available if that was what I had to do.

About an hour later a nurse I’ll call Brooke called. She asked what I was out of and a couple of other questions about my meds. Then she said that the refills couldn’t be called in until they were approved by the provider I will be seeing in the future–Dr Daniel. She told me it might be a few days before he approved them.

This is a screwed up situation for many reasons. I didn’t do anything wrong and shouldn’t have to go through the emotional and physical discomfort that comes with not having medication. The only reason I haven’t gotten completely sick from Effexor withdrawals is that since I started taking it 4 months ago I have saved some extra pills from days when I had migraines and was throwing up too much to take medication or the occasional day that I’ve forgotten my meds. Also when I had that therapy appointment instead of the med appointment, I went ahead and started only taking Effexor every other day so it would last longer.

But I shouldn’t have to do stuff like that. I should be able to get my damn medicine on time, unless I do something to prevent that like cancelling appointments and not rescheduling soon enough. I got my last refill of Effexor on August 25. If I hadn’t started alternating days I would’ve run out on Saturday. I have quit Effexor cold turkey before (when I was younger and didn’t know anything about med compliance) and within 5 days I was throwing up, trembling, getting brain zaps, and having trouble walking straight. I was also crying hysterically part of the time and ended up in the emergency room because I was suicidal. I am terrified of going through that again.

It’s also kind of nuts that I had med adjustments in May (including adding Effexor, which I was somewhat apprehensive about) and six months will have passed before I see a doctor again. What if I were experiencing side effects that weren’t emergency room level but needed attention earlier than 6 months later? Does this happen with physical health issues as well or are healthcare professionals more lackadaisical about mental health?

It blows my mind that this literally could be a matter of life and death and Centerstone has no sense of urgency about it. If I’d taken my meds every day I’d have run out three days ago and be sick/suicidal in a couple of days. If I had schizophrenia and ran out of meds I might experience psychosis. The symptoms of abrupt medication discontinuation can be life-threatening and that is not an exaggeration.

Also, why has it been my responsibility to fix this? It was Centerstone’s oversight in the first place. They are serving clients who have a hard enough time just making and showing up to appointments. Why make it harder for us by making us jump through hoops to get the meds we need to survive? Because of their lack of communication I have had to spend $35 I wasn’t counting on spending, call them repeatedly, deal with anxiety over running out of medication, and skip Effexor half of the days over the past 2 weeks. That’s not the way it’s supposed to be taken; it’s bad for my mental health.

I know I am not the only person who has gone through this sort of thing at Centerstone. I’ve talked with other patients in the waiting room and (tbh) eavesdropped on people’s conversations. It seems to be pretty common for med providers to give people less refills than they need until their next appointment (for instance, they get 3 refills but there isn’t an available appointment for 4 or 5 months). And we’ve all figured out that when you call for refills you have to tell the nurse you only have about 5 days left. If you say you have more than that, they’ll tell you to call back in a few days. But if you wait until you really do only have 5 days left, you’re going to run out because they take so long to get things done.

I realize that they are not-for-profit and they are currently overbooked and understaffed. But there HAS to be a better way. There has to be another way of handling and prioritizing things that prevents people from being left hanging without medication they need to function.


Is What I’m Saying Important?

So I blog and tweet about borderline personality disorder and major depressive disorder. I’ve made a few YouTube videos and been on that radio show I’ve posted about. I’m not speaking to a large audience, but I am speaking.

Some days I feel kind of like a tool about it. Why should anyone listen to what I have to say? My experience is not important. My suffering is insignificant on a large scale and not any more meaningful than anyone else’s. My situation isn’t especially interesting and I’m not full of wisdom. It feels self-involved to write and talk about myself this way.

Mostly, though, I think that’s negative self-talk. I think that comes from some of my core beliefs about myself–that I have nothing important to say, that talking about myself makes me bad and selfish, that people don’t want to and shouldn’t listen to me. And probably a little of it comes from society.

I don’t write/tweet/make videos about my experiences with mental health issues because I want people to feel sorry for me. I don’t expect people to change the way they behave because I have BPD (of course consideration and support is appreciated and my expectations differ slightly for those closest to me).

I’m talking about it for a few different reasons. For one thing, I like consuming content by people with borderline personality disorder and figured other people with BPD probably do too. For another thing, I sincerely want to help people. If I can be a source of comfort for someone who feels completely alone or someone who is experiencing that resounding borderline emptiness, I want to be. I know what that feels like and I hate to think of other people, even strangers, feeling that way. So if something I write helps someone else, I’m thrilled.

I also share in order to educate people. I’m not out to change the minds of people who think mental illness is a choice; that idea is way too overwhelming to me. I don’t expect people to learn every symptom of BPD and have a deep understanding of it. People don’t have room in their heads or their hearts to know and care deeply about every condition, disorder, illness, disease, etc. But it would be nice to let people know that BPD is a thing and that it doesn’t equal crazy/manipulative/having no conscience/etc. There’s a lot about BPD and mental illness in general that people just don’t know. There are things about the mental health care system that people don’t know that I think they should be aware of. I do think that there are people out there who are interested in knowing what it’s like and learning more about it. And even if people aren’t–the more we talk about mental illness like it’s a real and valid part of the human experience, the less stigmatized it will be. The more people hear about it and are exposed to it, the more they will accept it.

So is what I’m saying important? Not in a grand sense, but in a way, it is meaningful. It’s not special that I am the one saying it, but it does need to be said.

The Crash

So for three days after my stress bomb I was okay. I was really productive and just….fast. I’m not sure how to explain it. Not anxious, but not happy either. Kind of like I’d taken a huge dose of Vyvanse or Adderall or something of that nature. I was getting stuff done and focused but it was like I was fueled by adrenaline or something.

Then today I fell apart. I’d hoped the crash would happen later (or not at all) but meh. Work was good (sessions with the kids are often a sort of sanctuary from my emotions) but the rest of the day was full of bpd nonsense.

I was extra tired (which makes symptoms worse) from not sleeping well the past several nights and from sinus problems. Also I need to get off methylphenidate (Concerta) because it’s $75/month and I’m about to lose my income, so I have only been taking it every other day the past 5  days. I know it’s not a great idea to mess with my meds without talking to a doctor but I don’t know when I’m going to get my med maintenance appointment and I would rather wean off slowly than suddenly get cut off if I can’t afford it next month.

It’s pretty widely known that Marsha Linehan has said people with BPD are similar to third-degree burn victims; we have no emotional skin. That’s what it was like for me today. Everything hurt my feelings. Even if I tried to use emotion regulation, tried to correct my cognitive distortions, stuff HURT. I wasn’t expecting to see my boyfriend at lunch and when he came home I felt a burst of anxiety, irritation, and bewilderment. Not because I didn’t want to see him, but because things were not happening the way I had thought they were going to happen.

I became consumed with fear of the future. First of all, having to find a new job is terrifying. Not having reliable income is so fucking stressful. My unemployed times have been the worst periods of my adult life. Also, I’ve been at this job for three and a half years. It’s something I’ve been able to count on. I don’t spend time with many people (by choice) and I’m not comfortable with many people. But I’ve gotten comfortable with my coworkers and supervisors. I really like them. They won’t be a part of my life after this job ends; I’ll be losing people that mean something to me. Not doing the job will be a big loss too. It’s something that I’m very good at and I love so much. It’s fulfilling and brings me a lot of happiness. It’s a large part of my identity. I can’t picture what my life will be like and who I will be without this job.

Then I started thinking that this is happening because they don’t want me around anymore. They are tired of dealing with me and my illness. I am not worth anything to them at this point. It feels like this has been repeated for my entire adult life. Other people care to a certain point, and then they get to walk away. But I have to keep being me. I thought about how everyone leaves eventually because I’m sick. I’m bad and I make things bad. BPD, MDD, and migraines are the reason I’m 31 and not married, don’t have kids, don’t have my Master’s, have nothing in savings, am overweight, etc.

I cried and paced around my living room, fighting the urge to cut myself. I tried telling myself things that were the opposite of what I was feeling, but I didn’t believe any of it and it just made me more agitated. I attempted to do a crossword puzzle for distraction but threw it across the room when one of the clues was poorly worded. I ended up holding one of my cats and sobbing for a while. Then I covered my ears and hummed for a while (I don’t know why that’s soothing). It was one of those times that emotions are excruciating and I can’t do anything but try to hold still and wait them out without being self-destructive.

Fortunately the episode passed before I had to leave for my next session. I was still not in a good place, but working definitely helped. Unfortunately, I sank again once work was done and I was headed home. Every little thing hurt my feelings and immediately led to self-loathing.

I hope that this passes soon. I hope that the thoughts I’ve been having today are easier to fight tomorrow and that I can regulate my emotions better. I’m going to relax for the rest of the night and go to bed a little early. Screw these overwhelming feelings.

Stress Bomb

Today I found out that I have full-time hours and benefits at work until the end of October. After that, I can stay there on an as-needed basis (meaning I could get zero hours a week if they didn’t need me) or I can leave.

This wasn’t a blindside. I’ve been expecting something like this to happen; I just thought it would happen later–after Christmas at the earliest. It’s happening for multiple reasons, some of  which have to do with the fact that my job is research based and funded by a grant so it was never a permanent position. We currently have a low client load and are losing three kids in the next three months, so there aren’t as many hours of work as there have been in the past.

However, the reason this is happening to me and not other people is that I have missed a lot of work due to illness. I was out for about 5 weeks in April when I was in a partial hospitalization program at a psychiatric hospital. My time out was covered by FMLA, but while I was out someone had to be hired to take my place. When I came back to work I was moved around. Since coming back I have still missed too much work mostly because of chronic migraines but sometimes because of mental health issues.

The project managers have been extremely patient and understanding. They have done all they can to work with me and find ways to accommodate my challenges. But the things I mentioned above make it impossible for them to keep me full-time forever. Plus it’s hard to justify keeping someone who misses too much work as a full-time employee with benefits.

Even though I’ve had some warning about this, things have been very uncertain and I was hoping it would be a few more months before this happened. I wanted to spend the rest of the year saving as much money as possible and using my insurance as much as possible. I am fairly anxious about  what is going to happen in six weeks. Maybe they’ll need me enough for me to make the money I need to support myself, but maybe they won’t. I might have to find a new job. Searching for a job is soul crushing to me. Last time I was looking for a job I spent hours every single day looking online for jobs, filling out applications and sending my resume places. I got 2 interviews over the course of almost 2 years, including the place I work now. I am absolutely not looking forward to being back in that place.

The most frustrating part of all of this is that it is mainly happening because of my stupid illnesses. I’m not necessarily being punished for being in the hospital several months ago, but they had to make adjustments for my absence. They are not blaming me for being sick, but this is the way things are playing out. Once again, BPD, depression, and migraines are screwing up part of my life. I hate it.

I Don’t Want to Be Me

Lately I really don’t want to be the person that I am. There have always been (a lot) of things I dislike about myself. But these days I feel stuck as someone I don’t want to be even a little bit. I’m tired of myself.

I’m sure there are a lot of people who would tell me to change things if I’m unhappy with them, and I’m trying to change what I can. But mostly I feel stuck and like I’m not in control of my life.

I think a big part of that is the physical pain I’ve been in lately. I have chronic migraines and nearly constant sinusitis. As of right now I haven’t had a waking hour without a headache in 10 days. There’s not much I can do about it. I can avoid things that irritate my sinuses as much as possible (smoke, air fresheners, cleaning products, cut grass, perfume, to name a few) but I can’t control the ragweed or pollen or changes in barometric pressure. I take the meds I’ve been prescribed every day and use a neti pot, but that’s all I can do.

Chronic pain really adds to depression. It kills motivation (if depression even left you any), lowers mood even more, and makes the fight harder. Even if the pain isn’t extreme every day, it has a cumulative effect; being in pain every day or almost every day weighs a person down more and more as time goes by. And not being able to fix it adds to the feeling of not being in control.

I don’t really know how to explain how I feel without it sounding like I’m just making excuses. Maybe that’s all I’m doing. I just want to be someone different, someone better than I am who doesn’t have BPD and MDD. I want to be a person who accomplishes their goals and makes progress and isn’t a stupid piece of shit.

I Was On the Radio!

Yesterday I was honored to be on a radio show called Moments of Clarity. It is hosted by Tiffany Werner, LMCH on WTAN radio in Florida. Moments of Clarity is a show promoting awareness of mental health and ending the stigma surrounding mental heath issues. I had the chance to talk about borderline personality disorder on the radio which was really exciting.

I thought I couldn’t listen to Moments of Clarity before since it’s on live radio when I’m at work, but I learned yesterday that the show can be streamed online after the fact. I’m looking forward to streaming the show from now on and listening to past episodes.

Anyway, here is a link to the show’s page. Check it out if you get a chance, and if you listen to the one I was on, let me know what you think.



Low Carb Was Not For Me

A while ago I wrote about starting a low carb diet. I didn’t go full-on keto for other health reasons, but for 8 weeks I ate between 30 and 40 grams of carbs a day. There is one version of the Atkins diet that allows for 40 grams of carbs a day, so I know my intake was reasonable.

My diet improved; I ate a lot of chicken, salmon, and green vegetables. I was happy because I could eat cheese and nuts for snacks and didn’t have to obsessively count calories. I also think it was good because it made me pay attention to the sugar in things that I considered harmless because they were low in calories, like the calorie-free Gatorade. I know Gatorade isn’t going to kill me, but it was something to consider.

However, as time went by I gained weight and my mood became increasingly lower. I read more about the low-carb diet and learned that low-carb diets can cause/exacerbate depression and anxiety. Here are a couple sources:

I wanted to give the diet 8 full weeks in case my body needed time to adjust. After that time was up and I’d only gained weight and sunk lower, I decided to stop.

Obviously, this isn’t what happens to everyone. Low-carb diets work for a lot of people. It’s just not what my body wanted, so I need to do something else. I will say this, though: while eating low-carb, I had waaaay less stomachaches. I think it was a combination of eating more vegetables and eating less candy. So that was a good thing.

I guess now if I want to lose weight I will have to go back to counting calories. For the time being I have other goals I’m focusing on, as I wrote about in my previous post, but I am going to work on slowly improving my eating habits overall.