Category: anxiety

Never Again! Ketamine, and hospital bullying

On By WendyIn anxiety, Chronic Illness, Health Care6 Comments

This post may contain triggers for some. It talks about bullying, hospitals, trauma. Please take care of yourself first.

This Ketamine treatment was nothing like the first one.

I will never go though this again….NEVER.

I don’t remember anything real from the time they started the infusion until shortly before we left. I hallucinated the entire time, or maybe just lost time…who knows. Yet S tells me that I seemed lucid at\times. I knew there was a chance I could have hallucinations, and dissociate…but this was beyond what I ever expected.

I’m told I was having incredible abdominal pain…this happened last time, but only on the last day, but it was shrugged off as GERD. I received Mylanta and was discharged. I ended up in the ER two days later with severe pain and diarrhea that had been happening since I got home from the hospital. I was given a CT scan and test were taken, I was told I didn’t get any of the bad bugs (like Cdiff) in the hospital but they thought I did get something there. So I was put on a liquid diet for 2 days, followed by a bland diet for another two days, I was also given Dilaudin (a synthetic opioid derived from morphine) in the ER. All of those things relieved it.

This time I had severe pain during my treatment, again waking up screaming, and vomiting this time….I remember none of this. I was given meds, I don’t know what, but it didn’t help much. Again they wanted to discharge me (more about this later). I ended up back in the ER the day after I got home. First I was given Morphine, but it made me itch so much, it’s really hard to deal with intense pain and itching at the same time. I was also given two other medications, dilaudin, and haladol. The pain was so very intense. They actually thought I had constipation with the diarrhea. What? Who’s heard of such a thing? She said it showed on the CT scan, it also showed some “irritation and inflammation”. There is some condition called called paradoxical diarrhea or overflow diarrhea. It happens when watery stool leaks out around hard stool in the rectum. Have you ever heard of such a thing? I sure hadn’t. I don’t understand that, I was having regular BMs before the diarrhea. She wanted to admit me to give me a laxative to see if it helped. I was not willing to do it. I could do laxities at home. She also suggested a bland diet. I also took a stool softener, and magnesium oxide, and have had normal BMs since. I still don’t believe I had paradoxicol diarrhea. At least that part of me is fine. I am still having some stomach pain, but nothing like I was having. I’ll discuss it with my new PCP on the 16th. I’m so grateful I was accepted by this PCP, she used to be a headache specialist at Jefferson (a very prestigious headache clinic) so she is better suited to work with my doctor at the clinic in Phoenix, so I may not have to go there to get some treatments. This office came very highly recommended to me, by another doctor of mine. I hope they really are as good as they say.

More bad stuff

Okay so that was part of the horror of the ketamine. Although some of the visions were interesting. I had to have a catheter many times. They said (according to S) they don’t like to leave it in because you are more likely to get an infection. But the visions that came with it…it’s hard to explain. One of them I saw women surrounding me in ceremonial garments. I was the center of some ceremony. It was strange, but it didn’t scare me, I felt like I was in a place of honor. Other times I did not have good visions. I I wasn’t sure what was going on, I felt violated. I still do. I had no say in what was happening, how can you not feel violated when people are sticking things up your urethra when you are out of it?

There was also a time that I thought there were two Stuarts. One was on one side of the bed, the other was on the other side. It was so strange. I told him I had to smell him to make sure he was the right Stuart. I got very agitated by the second Stuart, he didn’t smell right and was very jealous of the real S, but I had the right one there so I wasn’t scared. S told me I talked about gnomes a lot, that’s interesting, but I don’t remember it.

I’m told when I was hurting so badly I called out for my mother. She died 29 years ago. I still miss her so much. I do always wish she was here to help me through this, help us through this. I’m just so very grateful I have Stuart, and I have such good memories of my mother. I was thinking how hard my life has been, so very hard. How could I be so unlucky? Then I realized I’m one of the most lucky people in the world! I have an amazing husband to help me through this. How could I be unlucky?

I’m getting way off track, as usual, at least that was a good thing….. so let’s get back to this traumatic hospital experience.

First Discharge attempt:

The day after the ketamine was stopped I was set to go home. We were all packed and ready. I was getting in the wheelchair and then said, I don’t think I should leave with so much abdominal pain. The nurse from hell tried to force the issue, then I had a seizure. Other nurses and a doctor came in and said I wasn’t going anywhere. I don’t remember any of this. None of it. How could I have felt like I was ready to go home, with the only symptom abdominal pain, and not remember any of it? After the seizure S told them that the seizures happen when I’m under an extreme amount of stress. It hurts me that I’m having psychogenic seizures again.

Being forced to leave:

The next day they gave me Dilaudin to help with the pain. They finally listened to Stuart. Shortly after the nurse came in with my discharge papers. Stuart said he wanted for us to stay for another 30 minutes to make sure I didn’t have a reaction to the medication. We thought that was all there was to it. I was eating my lunch when suddenly the nurse from hell and an entourage of other nurses and a HUGE security guard came in to escort us out. They had “patient belongings” bags and were ready to throw my things in and forcefully make me leave. I was very concerned and agitated. I kept saying I didn’t understand, why couldn’t I finish my lunch? Why was this happening. No one would answer me, so I got a little loud, I didn’t scream or anything, I just wanted attention since I can’t hear I thought maybe I was missing something. S was busy getting our things in the suitcase so he couldn’t be that help, I doubt they would have said much for him to translate anyway. When I raised my voice the security guard came over to my bed and loomed over me, I shouted to him “I’m deaf and do not understand” it was obvious he didn’t believe me. The nurse from hell tried to touch me to get me in the wheelchair, I did forcefully tell her “Do not touch me”. I got in the chair myself. I did keep saying that I didn’t understand. While we were waiting for the car….yes they all waited to make sure we left….I turned to that nurse, she was the closest person to me…and said I wanted to see who was in charge. She said she was….she was the charge nurse, but she was far from who would be in charge. I told her I wanted to know in writing why I was being treated that way. She said, “it’s been noted”. I asked for her name and she wouldn’t give it to me. I also felt like they put people between me and Stuart so we couldn’t bond together. They rushed me out so fast I didn’t have my mask, and the charge nurse evidently didn’t have hers on since I could read her lips. I am sure that the whole process lasted more than 30 minutes, if you include the time before they came in. Why did this happen? Bullies, that’s all they are….Bullies.

I will NEVER be treated like that again! I will refuse to leave until I at least get the people’s names. We made a formal complaint, I’m sure nothing will come of it, but they can’t find out what the security guard’s name is. I don’t want anything like this to happen to anyone else.

Another strange thing, I was told that a doctor came by that morning and I told her I was ready to go home. She’s the one who ordered the Dilaudin, they finally listened to Stuart, then said I could leave. She’s my headache doctor’s partner, so I do trust her. But I don’t remember any of that. I really don’t remember anything until I was eating lunch. It’s like my brain shut down because of the pain….or the ketamine really hit me hard….I don’t know. Stuart is concerned that I don’t remember the last two days after I was off ketamine and was ready to leave. I do remember every bit of those people forcing us to leave. They didn’t even ask, they didn’t come in and say that they couldn’t allow me to stay any longer….for whatever reason…they just came in and started to pack up my stuff and forced me out.

I’m now having nightmares. It’s hard for me when I go to bed, even when I’m not sleeping, I can feel that security guard looming over me. I can feel the hate in his and the nurse from hell’s eyes This is one of the most traumatic things that have ever happened to me. I’m very afraid the seizures will become a regular occurrence again.

I’m trying so very hard to not think about the past, I know it’s over and I’m safe….but ,my body doesn’t seem to know it, it is fighting hard. I’ve lost all hope. I keep telling myself that’s not true, but it is. I was certain this treatment would help. And it did the first time, until I fell. I was outside in the sun without my hat! I had so much relief. I did feel like it was helping my migraines at first, but the trauma those people caused, I believe that negated every good that the ketamine did. Now what? The only other thing I know of is lidocaine infusions, but I don’t know if I can go back in that hospital. I’m also jumping the gun, who knows what else my doctor has up her sleeve.

I’m trying so hard to be mindful. S keeps trying to get me to stop and really breathe. That has always helped before, and it really helps him. But right now, it isn’t very helpful.

More Horror:

The night after the ER visit I started having akathesia, this happened last time too, so I was prepared with medications from my psychiatrist here. she helped before. But it didn’t work. I was pacing so much! I was anxious. I couldn’t be quiet. The only relief I seemed to get was in the bathtub. I took 7 baths in less than 18 hours. Crazy huh? My psychiatrist increased the dosage on the meds and I finally started getting back to normal. I was to take them for 3 days, when I tried to stop them, the akathisia and extreme agitation started again. So I’ve been on a lower dose since then. I sure did sleep well on those meds, too bad I don’t sleep like that all the time.

I think that’s all….I hope that’s all.

I do have another major stressor going on right now, but it’s worrying about someone else, not anything about me. Nothing I have any control over. Is there anything I have control over? Not my life, that’s for sure.

Ketamine and Esketamine — Repost from Experiments in Happiness

On By WendyIn anxiety, Bipolar, Chronic Illness, Invisable Illness, Mental Health9 Comments

In the upcoming weeks, as soon as my insurance approves it, I will be receiving Spravato (esketamine nasal spray) for depression. I wanted to put together a post explaining what it is all about it, then I found this post and thought I couldn’t possibly do a better job. So I hope you don’t mind if I share this with you. Please note that this covers all forms of ketamine, if you want to just read the “How Effective Is It” statistics surrounding what I will be receiving read sections 3 and 4. I got so much information from tbe post started to not even watch the video attached to it, but then I noticed that it is captioned so I went ahead and watched it and it is very interesting. It does get a little in depth in the science part of things, so if you are interested in that kind of thing, it’s worth it, but if that bores you, you might want to skip it.

Do you have any experience with ketamine? Know anyone who has? Do you have or know anyone who has, medication resistant depression? Or like me, the meds stopped working or there are just way too many bad side effects? I’d love to know other’s experiences.

Ketamine and Esketamine

Drug Class: NMDA Antagonist

How it works: Blocks a channel for a chemical in the brain called NMDA. This, in turn, increases the effects of another channel for a chemical called AMPA. This leads to increased effects of BDNF and mTOR. The increased effects of BDNF and mTOR helps the brain to rapidly form new […] Ketamine and Esketamine — Experiments in Happiness

Starting to Deal with My Anxiety

On By WendyIn anxiety, Chronic Illness, hearing loss10 Comments

I’m in the infancy of dealing with my anxiety and I thought I’d share some of the things I’m working on with my therapist. There are a number of things I’m starting to implement but the very first thing I’m to do is to understand that it’s perfectly alright for me to avoid things that cause me increased anxiety. In the future I will push myself to do things that are uncomfortable, but, right now, I’m going to just back away and take a breather from things that make me the most anxious.

tshirt design on redbubble

Next is to make sure I’m taking care of myself, eating well, exercising when I can (something that can be a challenge for someone with chronic illnesses, but something that can help a lot I’ve found.), keeping up physical hygiene and getting enough sleep. Sleep is so important that my psychiatrist prescribed something to help for days when I simply can’t fall asleep. I used to sleep 8 – 9 hours a night without aid before the mixed mania episode now I barely make it 4 without help. I had 2 nights last week where I slept almost 7 hours without any help, that’s a great improvement, now if I can just have more nights like that.

My therapist suggested I do deep breathing exercises during times of high anxiety and have reassuring phrases prepared to tell myself.

BREATHE…IN 1 – 2 – 3 – 4….HOLD…OUT 1 – 2 – 3 – 4

IS MY BODY CALM? REPEAT AS NECESSARY

I WILL GET THROUGH THIS.

I AM GOING TO BE OKAY.

THIS WILL PASS.

I have another grounding technique that I got from a friend that I find helpful but it is a bit challenging for me, because it’s based on the 5 senses, so I do it a little differently but I think it works just as well.

You do this grounding technique by taking stock of all your 5 senses. If you can, try to say this aloud as you are processing it, if not, that’s okay too.

5 – See – What are 5 things you see around you right now? I see my computer, my water bottle, my walker, the fireplace, the rug.

4 – Touch – What are 4 things you could touch or feel right now? I can feel the water droplets on my bottle, I can feel the softness of my blanket, I can feel the ribbing on my sweater, I can feel my hair

3 – Hear – What are 3 things you can hear? (okay for me this one is different, if I can’t hear 3 things I list things that could make noise, or noises I’ve heard that I like….) Right now I hear a whistling in my tinnitus. I hear the TV is on. I can imagine there is traffic making noise outside.

2 – Smell – What are 2 things you can smell? I can smell….well not much I have a cold..hahaha…but if I didn’t I could smell my tea, I could smell my dog.

1 – Taste – What is 1 thing you can taste? I can taste my tea.

I’m doing this exercise at least once a day just to become aware of my surroundings and to make sure when I do it when I’m anxious I’ll be able to just easily fall into it and not be freaked out trying to figure out what I was supposed to do. I did that once and it freaked me out worse.

I keep a card in my purse and one in my side table at home that list this grounding technique, I admit I can never remember what comes first and then I get all anxious so it just negates the purpose. On the other side of that card I have the breathing techniques and affirmations written to remind me, because when I’m having a panic attack nothing much is really getting through this noggin’ of mine.

I’m also working on trying to be more mindful. As anyone who reads my blog knows I have focused on mindfulness for a long time, but for some reason when things started to get worse my mindfulness practice started to stray. The senses grounding technique is also a mindfulness technique that’s a good start. I’m also trying to consciously take at least 5 minutes a day to be very mindful aware…. non-judgmentally.

So that’s what I’m doing right now. As I go through this journey I’ll share more with you. I know that my hearing loss and other things in life are causing me to have a lot of anxiety at the present, but I’m not giving up. I also know that it’s not just my hearing loss. Before we moved to Tucson I was starting to really deal with my hearing loss anxiety, I was starting to get out there and push myself. I went to a couple of Christmas parties, and made some friends. I got involved in the Hearing Loss Association. I was driving again, for short distances (the traffic in Charlotte was crazy), but once we moved here my physical health took a turn, and so did my mental health, not to mention the stress of the move itself. I feel like all the strides I took are gone, but I know I can do it, I have. As a friend said to me, “We can get far going one step at a time.”

Some things are hard to talk about. Pocrescophobia

On By WendyIn anxiety, Chronic Illness, Eating disorders, Invisable Illness19 Comments

I’ve been struggling with something for a while and I’m not actually sure I feel comfortable talking about it, but there may be someone else out there struggling with the same thing who needs to know they aren’t alone.   I have an intense fear of gaining weight.

*****this post talks about eating disorders, this may be a trigger for some of you, please take care of yourself and read (or not) accordingly*********

As many of you may know, I lost 45 pounds in 2017.  This is something I have been trying to do for a long time.  I gained a lot of weight when I first got sick, on top of losing my independence, suddenly my body no longer felt like mine.  I weighed 225 pounds at my heaviest, and I didn’t recognize myself.  (I’m barely 5’5″ tall)  A few years ago I found out that I have Fructose Malabsorption and went on the appropriate diet to help with that, and at that time I lost 45 pounds, and kept it off.  However, I was not happy with my weight.  I was still overweight and it ate at my self esteem.  I tried and tried to lose weight over the last few years, but it just didn’t come off.  I had my yearly physical last year on December 30th, and at that time I weighed 182 pounds.  I was determined to lose weight, but I really wasn’t sure I could do it, and I was ashamed that I hadn’t been able to do it before.  Then I was put on a medication for my migraines that reduced my appetite.  Suddenly I was able eat much less and not feel hungry.  (Normally I feel hungry often.)  I lost weight, it came off slowly, but it steadily came off.  By the time I had my yearly physical last month I weighed 140 pounds.  (140 lbs at the doctor’s office, at home I weighed 135lbs)  The medication stopped curbing my appetite, now I’m fighting hard not to gain all that weight back.  I was able to bake for the holidays this year for the first time in many years, but I didn’t just bake, I ate, and I have been terrified that I’m going to gain….and gain…and gain, yet I can’t seem to stop eating.  I’ve gained about 5 pounds.  I know how quickly those 5 pounds could turn into 80+ pounds, and I’m desperate to not let that happen.  So many people will say that 5 pounds is nothing when you gain weight, they tell you not to worry about it, it’s really not that much, but those same people will tell you how great it is when you lose 5 pounds, how that’s a lot of weight to loose….  How can both of these be true?

When I lost the weight this year I found myself in love with my body for the first time since I can remember, if I ever felt that way at all.  I accepted that this body was not as I wished it would be.  Let’s face it, a 54 year old’s skin doesn’t really shrink back when you lose weight, but I was happy with what I saw, I loved all of me, saggy skin, cellulite, and all.  However, even though I felt that way, I was still terrified of gaining the weight back.  At one point, I went to the grocery store and started to buy some gluten free flat bread to make a pizza with, when I saw the amount of calories it had per serving I broke down in tears.  I was paralyzed with fear.  I simply stood there and cried.

Now, I see myself as fat.  I can see that I’ve lost weight, but I also see where I’ve gained some, and how much more I need to lose.  (10 pounds seems to be as hard to lose as 50)  I see photos of me and I think I look pretty good, then I look in the mirror and know that isn’t true; it takes a lot of effort to look good for the photos, on a day to day basis, I don’t look like that.  I look down at my body when I’m sitting in the living room and I’m appalled by the rolls of fat on my stomach, the bulges I feel under my arms, (back fat is not attractive), and the drooping of my breast.

I feel better since I’ve lost the weight.  I can get up from the floor easily.  I can walk further than before.  I go out with more confidence (most days).  I love wearing smaller sizes.  I think I look good…..sometimes.  Other times…well I covered that haven’t I?

I’m scared.  I’m terrified of gaining weight.  This is an intense fear, yet I can’t seem to stop eating.  I’m hungry all the time.  I’ve had a love/hate relationship with food for a very long time, my whole life really, I don’t want to go into detail about my past, but I need to let you know this isn’t the first time I’ve struggled.  Now it is even more confusing.  My weight seems to always be in a state of flux.  Since I was able to keep most of the 45 pounds I lost, I was encouraged that I would be able to this time, I’m afraid that isn’t the case.  I’m afraid I will need to track every thing I eat to make sure I don’t over eat or under eat.  I’m afraid I’ll need to exercise as much as possible in order to keep the weight off, but that is physically impossible because of my health, and I hate myself because of it.  I’m afraid I’ll fail and the weight will come back.

I’ve been trying hard to not eat as much, and to eat nutritionally dense foods; this hasn’t happened, instead I’ve been going overboard on sweets and cereal, and I beat myself up over it.  The guilt and fear is so great that I have tried many times to make myself throw up. (I can put my finger all the way down my throat and not throw up.)  If I could just get it out when I eat too much, I know I would feel better, I would be back in control.  No, it wouldn’t take away the guilt (I’m sure it would cause more guilt), but the fear is stronger than the guilt.  I’ve exercised to the point of absolute exhaustion (not regularly).  I have taken laxatives when I feel I’ve over eaten (not often, but I have).  I suffer from chronic constipation and get obsessed with how much that makes me weigh (how much extra weight is in me), laxatives help.  I try hard not to have them in the house, so I won’t abuse them.  I’ve actually been happy when I’ve had intestinal distress, because it’s a sure way to lose weight.  I’ve wanted surgery to make me look better.  These actions and thoughts scare me.

I will work on these things.  I may go back into therapy, but first I am going to try to deal with it on my own.  As many of you know I can’t drive because of the sudden attacks of vertigo I have, this makes it very difficult to get to therapy sessions.  Stuart has to juggle his work schedule to drive me places so we try to keep my appointments to one a week, two at the most; if I have therapy every week how can I go to any other appointments?  I just want to handle this by myself if possible.

I don’t think I have a full fledged eating disorder, yet.  I do not avoid meals.  I eat when I’m hungry, even if I feel I shouldn’t be hungry.  I have not been tracking every calorie I put in my mouth. However, I do plan to, to make sure I’m not over or under eating, and I will admit, to loose a few pounds.  I’m not avoiding foods, I do plan to cut sugar out of my diet for a while, but that’s not a bad thing, right?).  I normally do not eat so much that others would find it unusual. (however, I feel it is)  I do not purge, but I do admit, sometimes I would if I could.  I have a lot of fears and I can see that my actions have been changing because of these fears.

I have Pocrescophobia (the fear of gaining weight); I know this fear could lead to serious health issues, I know it is causing extreme anxiety for me, and I know it is hurting the people who care about me.  I will get a handle on it, if I can’t do it alone, I will start seeing a therapist and talk to my doctor.  (I promise)  Right now, I’m simply trying to be open and honest about this.  I’m asking you to not judge, or worry about me, I simply ask you to be witness to my fear and support me while I deal with this.

I do wonder how many people who have a chronic illness struggle with these feelings.

For further information, or help, I’ve listed a few organizations that deal with eating disorders:

 

Panxiety

On By WendyIn anxiety, Chronic Illness, Guest Post5 Comments

Today I’d like to introduce Lorraine of My Frilly Freudian Slip.  Lorraine is a good friend of mine and the author of beautiful poetry and prose.  You will find her writings at myfrillyfreudianslip.wordpress.com.

Lorraine is fighting Bipolar I and severe anxiety.  They can’t find medications that work for her.  Following you will read a first hand account of what it is like to live with “Panxiety”.

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photo by Lorraine of My Frilly Freudian Slip

“Pounding heart. Constricted throat. Knotted stomach. Dread washes over me. A panxiety attack.

Coming, unbidden, from some where inside my mind; spilling into my consciousness and flooding my body with anxiousness.

Breathe in through nose to count of ten, fill lungs, feel belly lift. Hold. Breath out slowly to ten.

Drift – visualize place of calm. Walking on beach, tide tickling toes. Finding beach treasures: sea glass, sand dollar. Smell sea tang. Feel breeze against skin.

But the panxiety is stronger – can’t focus; can’t concentrate. Pace. Half finished tasks lay scattered around the house – stopped in mid-flow. Forgotten. Pace.

Distract. Words on page, coloured pencil on paper. But, hands and mind shake.”

Daily, I deal with panxiety – a panicky anxiety attack – lasting minutes or hours. Sometimes the dread follows, flows all day. Few solutions to the foreboding; apprehension. Becomes so hard to concentrate that writing, my usual distraction from mental and physical pain, is almost impossible. I lose words; sentences fly off into the ether.

There are times I can force myself to lay still. To tell myself one of my “head stories.” Perhaps to drift off to sleep for awhile. This doesn’t mean I stay under long, nor that I wake calm. But when I can “nap,” my emotional and physical self gets a break from the relentless panxiety.

I have to confess turning to medication more than meditation when the attacks are furious and frequent. Always haunted by anxiety, these spells have increased in number and severity. Linked to a series of traumas, mental collapse and going untreated for several years afterwards.

I am on the bipolar 2 spectrum with chronic depression, rapid cycling, and bouts of hypo-mania manifesting in over indulgence and obsession. My bipolar isn’t responding well to medication; I am mostly teetering on the edge of instability, often falling all the way in.

Depression is my background music. Even when the volume is turned up, I can become agitated and anxious. As my depression can not be treated with anti-depressants (they don’t work), it is hard to level my mood. These swings are often accompanied by panxiety.

My anxiety has never been fully addressed. The medication I am given is not in a sufficient dose to stop the attack completely. And, I take nothing that addresses it on a daily, 24 hours basis. I seek to gain control of these attacks by other means than Ativan or Klonopin. However, often panxiety, like depression, wins. Doesn’t mean I stop fighting – I just have to do battle harder and stronger the next time.

Seeing a therapist has given me an outlet; a safe space to talk about how I feel. A person who helps me explore my mental health issues including honouring and acknowledging the traumas underlying the escalation in my panxiety attacks. Therapy can be the life-line that grounds me while I do battle. A reprieve to polish my armour.

Lorraine  myfrillyfreudianslip.wordpress.com