Health Mystery

This post is going to be about health stuff, including some mild reproductive system stuff, so if that might be upsetting to you, you probably don’t want to read this.

I’ve gone through phases of sleeping poorly for most of my adult life. It’s milder than true insomnia and seems to be caused by physical discomfort. I lie down and can’t find a comfortable position. My legs or shoulders or neck or arms (or all of the above) are too tense or achy or stupid-feeling for me to fall asleep. This’ll go on for a couple of weeks and then I’m back to sleeping normally for a month or two.

I’ve believed I was more tired than average for the past seven years or so, too. Depression can cause fatigue, as can chronic migraines and sinus problems which I also have. I always blamed my lack of energy on those things, and I figured I was probably a little lazy, too.

This March I had a headache every single day of the month. I feel like I had a migraine that showed up and didn’t fully retreat until April. It receded a bit some days, but on a scale of 1-10, I rated my head pain 6 or higher 21 days out of 31 in March. I was tired and sad and discouraged. Being in constant pain does that.

The first week of this month (April) my headache finally let up completely, but I still felt worn out and listless. Getting out of bed for work was a huge struggle. Every day felt like a fight I wasn’t equipped for. I just didn’t have any energy. For the most part I’m very good about practicing good sleep hygiene (no caffeine close to bed, no naps during the day, put my phone away before getting into bed, etc) and made an effort to eat well. I tried exercising, but even short walks just made it worse.

One day I woke up feeling like I’d rolled down an asphalt hill and was fed up. I called out of work and made an appointment with my primary care provider. She listened to everything I had to say and took me seriously, which was great. She heard a heart murmur that wasn’t there before, so she said she wanted to order an EKG and an echocardiogram. She also asked me to come back when I hadn’t eaten to have blood drawn.

The next day I threw up on the way to work. Since I hadn’t eaten anything yet, I went to the doctor’s office and got the blood drawn. That day and the rest of the weekend, I basically just read and slept. I didn’t even feel like playing Skyrim, which I’ve been extremely into lately. My boyfriend started working on this year’s garden without me, which was a bummer, but I just didn’t have it in me.

A week ago today (April 13th) I had a follow-up appointment with my gynecologist I’d scheduled months ago. In late December and early January I’d noticed blood on the toilet paper when I wiped several times. There was never enough blood for it to actually leak onto my underwear, just an occasional streak on the toilet paper. It bugged me enough to schedule an exam, so I had one in January. Then in February I skipped my period. My March one came on schedule. The occasional blood still showed up.

I filled my gynecologist in on the other symptoms I’ve been experiencing lately: crushing fatigue, aching muscles, slight dizziness, stiffness, increased light sensitivity, constipation and diarrhea, and the new heart murmur. She did a well woman exam and a nurse drew blood to test for anemia and check my thyroid function. I also gave a urine sample, which they told me had a small amount of blood in it. The gynecologist scheduled an ultrasound for April 25.

Friday I called my primary care provider’s office and the only test result they had was B12, which was normal. My echocardiogram and EKG still hadn’t been scheduled. I was super frustrated, but I didn’t really know what to do. I grew up not going to the doctor for anything, and I’m not an assertive person, so I figured I just had to wait around for stuff to get done.

Sunday I got an email from my gynecologist. There is a patient portal that sends emails when lab tests come back. Everything was normal: my pap smear, my thyroid test, my CBC (complete blood count), the urine culture (there was no UTI). I was relieved that the pap smear was normal, but I burst into tears when I saw that it said “no signs of anemia.” I’d been sure anemia was my problem. It fit my symptoms so well, and I’ve been anemic in the past. It would have been such a sensible explanation with a tidy solution.

I cried for about 20 minutes, thinking I was making all this up, that I’d be stuck feeling this way forever because they’d never find a reason since there is no reason other than my being a lazy crybaby who wants attention. I couldn’t imagine how I’d get through life being this tired and sore and weak.

Later I texted my mom and she told me that I couldn’t just create a heart murmur and blood in my pee with my imagination. That made me feel a lot better. The next day I called my nurse practitioner’s office and made another appointment.

My friend M went with me to take notes and ask questions. I am having trouble focusing lately too and it really helped to have her there. She made sure nothing was forgotten. My nurse practitioner was great again. She listened patiently and was thorough. She explained the mix up with the blood tests and the delay in getting the echocardiogram. She did a 10 second EKG, which was normal, but is also referring me to a cardiologist. Blood was drawn to test a bunch of stuff, including ferratin level, lamictal level, and whatever it is they look at to aid in diagnosing lupus and another autoimmune disease.

She gave me an order for a chest X-ray so my friend took me to the hospital for that right away. They called today and said it was normal, which is great. Tomorrow afternoon I can call and see if any of the other lab tests are back yet.

So that’s where things are now. I haven’t been able to work. My job is physically and mentally demanding (I do therapy with toddlers). Even if I could force myself to push through the pain and fatigue, it’s pretty apparent that I am sick, especially because I’m getting out of breath easily. I don’t want families seeing me this way.

I am vacillating between thinking I’ve dreamed all this up and that it’s going to be humiliating when they tell me that I’m a delusional hypochondriac drama queen and worrying that something serious and life-changing is wrong with me. I’m also afraid that this is the beginning of a years long quest for a real diagnosis, that I’ll have to go from doctor to doctor before someone with the expertise to do something about it actually takes me seriously.

Uhhhhh…..I guess we’ll see.

Standing Up is Hard to Do

I really, really suck at standing up for myself. I am not assertive. I’ve been this way as long as I can remember.I don’t understand why. My parents did not have poor boundaries with me or others. My brothers and I told each other to back off when we were annoyed with each other. But when it comes to anyone else, I’ve pretty much always lacked the ability to say no.

When I was eleven, I loved the Baby-sitters Club. The week Abby’s Book showed up in the bookstore, my mom bought it for me, along with another one I was really excited about. I took them to my brother’s Little League game the next night to read. A girl whose brother was on the opposing team sat with me and told me how much she loved the Baby-sitters Club. At the end of the game she asked me if she could have the books, and I said yes. I didn’t want to, of course. But I had no idea how to say no. I felt like I couldn’t, even though I knew it wasn’t polite for her to just ask for someone else’s stuff.

My mom found out a few days later and told me that she understood that I was trying to be nice, but from that point on there was a rule against giving away presents. I loved rules that made it easy for me to say no to things I didn’t want to do anyway.

I’ve done countless things because I was too chicken to say no, from entering an unfinished class project into a school science fair (and then having to listen to several teachers tell me I should’ve given more effort) to working other people’s double shifts when they were hungover to letting a guy put his hands in my pants in 9th grade.

It’s not that I haven’t tried to fix this problem. I talked at length about it with a counselor at health services in college. I read Your Perfect Right by Robert Alberti & Michael Emmons. I’ve rehearsed assertive statements on my best friend and various therapists. I try to “know my rights” and what will make me feel taken advantage of. When I don’t want to do something or am unhappy with a situation, I come up with alternative suggestions or practice respectfully declining in my mind. But when it comes time to actually say the words (or text/email/etc) the words, I chicken out, unless I can come up with a reasonable excuse.

Trying to stand up for myself doesn’t just make me uncomfortable. Thinking about it makes me panic. It feels like something TERRIBLE will happen if I do it. People will say stuff like, “Just tell her you can’t. Say you’re busy or too tired, because you are.” And I’ll just think, “HOW???” Finding the words isn’t the problem. It feels like I am physically incapable of doing it. Every time I get close, tears fill my eyes and I get choked up. If someone asks me to do something over text and I make up an excuse, I end up feeling anxious and crappy. So a lot of times I do things I don’t want just to avoid feeling bad even when I could give an excuse/reason.

I’m guessing that this stems from a fear of other people being displeased with me. I also am uncomfortable with the people I love being unhappy, even if it’s not directed at/because of me. So I do what other people want (and what I perceive that they want) as much as possible because I am happier when they are happy.

Obviously, though, it’s more complicated than that. If I were completely satisfied doing what other people want, then assertiveness wouldn’t be an issue. I wouldn’t need to stand up for myself because I’d be perfectly fine doing others’ bidding all the time. But I’m not happy doing that. I want to do my own stuff sometimes.

 

I don’t think there’s a quick fix for this issue. I can go through the checklists on articles about assertiveness all I want. I still fall apart when the time comes. I think it’s going to be a complex process; I have to learn to be okay with people I care about possibly being displeased with me. I also have to get used to being assertive and see that it won’t cause the world to end.

If anyone has suggestions or can relate, feel free to comment.

 

 

 

 

 

Confession: Emotional Eating

It’s been a while since I wrote. I’ve been going through that “do i really have anything significant to say” thing again. There are already so many good  blogs out there. Most of the time I feel like anything I have to say someone else has already said better.

Also, the thing I’m struggling with the most lately is pretty embarrassing. It’s harder for me to talk about than mood swings or self-injury or doing a crap job of taking care of myself.

Buuuut since being honest about mental health and BPD and myself in general is part of my whole thing, I’m going to make myself do it.

The issue I’m ashamed of is my unhealthy relationship with food. I know lots of people prefer junk food to healthy food, and I know that healthy eating isn’t something that comes easily for anyone. It takes some level of effort for everybody. It’s more than that in my case.

I haven’t been diagnosed with an eating disorder, but I think it’s safe to say I’ve got some disordered eating habits. I am an emotional eater–and not like, “Oh I ate half a gallon of ice cream after a horrible break up.” More like eating is a daily response to stress, sadness, and frustration. I’m pretty secretive about eating and will go to considerable effort to hide what I consider unacceptable eating from other people, even my boyfriend. I have certain foods I consider safe and others that are not okay, for whatever reason.

I don’t binge or purge, and I don’t restrict very often. Because of that, I generally feel like my eating problems are a matter of not having any self-discipline or willpower. I’m clearly not in the emotional hell that people with eating disorders experience, so it must just be that I’m a self-indulgent glutton. Other times I think it might be more complicated than that because I will eat normally and healthily until I get stressed/emotionally distressed and then my eating habits will fall apart.

So really I don’t know. Maybe I’m just a piece of crap with no self-control. Maybe I’ve got disordered eating because of emotional problems that food has become tied to. Either way it’s something I’m struggling with a LOT that I am going to have to work out. I hope to be posting about it in the future as I try to make sense of it and change my actions.

Better Circumstances, Better Me

I have been noticeably less symptomatic for the past few months. My mood swings are less frequent and intense, I don’t feel empty as often, and I don’t get my feelings hurt as easily. However, I don’t think this is because I have improved my DBT skills or become a master of managing my symptoms. I think my improved state is largely due to circumstances.

This makes sense since it is BPD is generally considered to be less based in neurochemistry and more based in cognitive distortions and difficulty regulating emotions and behavior based on trauma, intense fear/pain, being in an invalidating & non-nurturing environment, etc. Marsha Linehan has noted that borderlines are dependent on their environment to regulate their feelings and actions. So it’s not surprising that I am feeling and functioning better since my situation has improved.

I am fully aware that I have been very lucky, and I am so grateful. I am in a relationship with a wonderful, validating person who makes me feel secure, for the most part (meaning that I still have a lot of insecurities but they are not logically based on things he does). My hours at work went from 40 a week to 30 a week, which reduced stress. My boyfriend and I aren’t middle class or anything and we have to be careful with money but we don’t have to worry about how we’re going to pay rent and utilities from one month to the next. October to December is my favorite time of year, especially Christmastime. So that has added a huge amount of pleasure and happiness to my daily life lately.

I really think that if I were working a job I didn’t enjoy, worrying about money, and experiencing a bunch of conflict in my relationship, I would be EXTREMELY symptomatic. Even if one of those things were the case I would be pretty symptomatic. My stress tolerance is still rather low and my mood zooms up or down when too much is going on or something hurts my feelings. It’s like someone running naked through the woods and getting bitten by mosquitoes, scratched by thorns, stepping on sticks and rocks, etc. The longer they keep going and the more obstacles & irritants there are, the worse they are going to feel. But if all the aggravating stuff is removed, it’s still annoying to be in the woods naked (or a person who has so much trouble regulating themselves) but it’s much easier than it was before with the thorns and mosquitoes and such.

Right now I’m naked in the woods, but I haven’t run into any thorns or bugs or rocks yet.

What Goes Through My Head Before A Party

Last Saturday I went to a surprise birthday party for a friend I went to college with. I’d known about the party for a few weeks and most of the people there were going to be people I went to college with and their spouses. My best friend of 21 years was also there. I was really looking forward to it.

I got extremely anxious beforehand anyway. A lot of people don’t understand that it’s possible to want to do something very much and still be anxious and nervous about it. I can’t tell you how many times I’ve expressed anxiety about something only to be told, “Then don’t do it,” or “So stay home.” But it’s not that simple. Sometimes I do just want to stay home, but other times I want to do the thing. Anxiety doesn’t care, though. It still shows up.

I was asked to bring an appetizer sort of thing, and I wanted to contribute, but I am a horrible cook so it ended up being a source of stress for me. Because of that and other factors, I cried several times before the party.

Just in case anyone is reading this who doesn’t experience social anxiety, here are some of the things that went through my head before and during the party. Maybe it’ll make it a little easier to understand why those of us who deal with this get weepy, irritable, tense or quiet before social situations.

  1. If I cook something and it sucks I’ll end up crying and staying home.
  2. If I take something store-bought it will seem like I don’t care.
  3. Everyone else is going to look so pretty and cool. I’ll be the fattest and ugliest one there.
  4. C and M always have really cool clothes on. My clothes are so boring.
  5. If I wear long sleeves will it be weird since it’s so hot outside? If I wear short sleeves people will see my scars and think bad stuff about me.
  6. What if the lights are too bright or the air freshener makes me sick? Everyone will think I’m a baby if I say I’m sick and leave early.
  7. BFF didn’t answer my texts. She’s probably just hanging on to our friendship out of guilt and a sense of nostalgia. I’m probably so annoying and she’s tired of me talking about my feelings every time we converse.
  8. I’ll be the only one there who isn’t married. I’m not married yet because I have BPD and I’m bad and shitty and unlovable. Are they going to figure that out? Will I be an outsider?
  9. I haven’t seen some of these people in years. I don’t know what I’m going to say. They see each other more often. I’m going to get left out.
  10. What if I trip and fall or break something?
  11. What if I clog the toilet?
  12. My boyfriend is going to spend the whole time thinking about how much funnier, prettier, smarter, cooler, and more confident the other girls there are.
  13. Why would he want to be with me, especially when I have BPD and I’m so anxious about this?
  14. My hair looks stupid.
  15. I still suck at doing make  up.
  16. What if there’s an earthquake or a tornado and I die away from home?
  17. What if someone asks when we are going to get married? I’ll cry from embarrassment.
  18. I’m going to panic if the house is too crowded and loud.
  19. Everything I say sounds so dumb and annoying.
  20. People don’t really want me around.

I know these don’t sound like the thoughts of someone who wants to be at a party, but I truly did. I loved seeing my friends and their spouses. Three of them have children and playing with them was so cool. We laughed a lot and reminisced and talked about our lives now. If I could turn off the worry and anxiety, I would, but I don’t have that ability yet.

I think most of the thoughts are caused by a mixture of self-esteem and fear of abandonment. Others are pure fear, like being afraid of dying away from home. Sometimes being social isn’t worth the anxiety for me, but this time it was.

Troubles With Venlafaxine (Effexor)

The first week of May I started taking extended release venlafaxine. I’d been on immediate release buproprion and it was making me very anxious and excitable. I was having trouble sitting still and felt compelled to talk a lot and do things very quickly when I was on it. The provider I saw switched me to extended release buproprion and suggested adding venlafaxine as well. She said that it often helps with anxiety and goes well with buproprion.

I’ve been on venlafaxine in the past (about eight years ago) and didn’t like it. I don’t remember why; I just remember that I repeatedly asked the provider I was seeing back then to switch me to something else and when she didn’t, I quit taking it cold turkey. I got sick and ended up in the ER. That was the last time I ever stopped meds like that. It was horrible.

So when the lady I saw in May suggested trying venlafaxine again, I was kind of hesitant. I decided to give it a shot because when I was on it years ago I hadn’t been diagnosed with BPD yet and I believe I had unrealistic expectations when it came to medication. I also was encouraged by what she said about it going well with buproprion.

I have definitely noticed a difference since I have been taking venlafaxine. I am having less anxiety and my depression is not as intense as it was 6 months ago. I don’t feel like a different person or anything like that, but it is certainly effective.

But lately I have gained weight, which is very frustrating. When I thought about it some more, I remembered that I gained weight when I tried the low-carb diet and I also gained weight when I followed another food plan. The only time I have been able to maintain weight (and at a couple points lose a few pounds that repeatedly came back) has been when I severely restrict calories.

Also for the past few weeks I’ve been thinking that my hair looked a tiny bit thinner right in the front in the center of my hairline. Plus I had more coming out in the shower than I was used to. Today I looked it up and hair loss is listed as one of the rare side effects of venlafaxine. I read on a few forums where people posted that they’d noticed hair loss while on it, too. So I looked at some photos of myself from 6 and 7 months ago and there is a slight difference in a few spots along my hairline.

Soooo I am going to get off venlafaxine if possible. I don’t get to see a provider until December 2 so I’ll have to deal with it until then. It’s lame that I’m having obnoxious side effects when it’s actually working, but that’s the way it goes a lot of the time. And I recognize that it could be much worse–it’s not tardive dyskinesia or jaundice or drooling or gastroenteritis, which are some of the other rare side effects. But I am already technically overweight and should not gain more. Plus it’s making me feel bad about myself, and so is the hair loss. I’ve got other options and I’m going to ask the provider if I can give those a try.

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.