Update on Spravato

Some of you have been following my journey with the new treatment Spravato (esketamine) for my medication resistant bipolar depression. I just thought I would give an update now that I have had 16 or 17 treatments and am going every other week after starting with twice a week.

If you haven't read my other blogs, a quick update on what it is. It's a nasal spray for medication resistant depression. It is administered in a certified doctor's office, and you stay there for a two hour monitoring period afterwards. It is derived from a form of medical ketamine.

The side effects are weird but not unpleasant. Yesterday was, for some reason, my most intense experience yet. I had serious dissociation (where you can feel disconnected from your body, thoughts, and feelings) and hallucinations, which are the two primary side effects that I feel. It's pretty weird, though, which is why you have to be monitored for two hours (and also it can increase your blood pressure but not mine). Plus, you can't drive for the rest of the day.

It has given me my life back. I can actually laugh and smile and play with my grandson and interact with people and leave my house more (although that is still hard). I am not "cured" because there is no cure for bipolar disorder, but I feel better than I have in years.

My hope is to be able to go to a once a month cycle at some point, but I am still having a bit of a struggle a couple of days before my treatment which tells me that I still need to stay at this frequency. I'm not ready to stretch it out yet.

So that's where I am. If anyone has any questions about Spravato, the experience, the side effects, or the outcomes, please feel free to message me. Hope this helps some people. Good luck.

Depressive Episode or Bad Day?

Since starting my blog I realized that I mostly post when I am in a depressive episode. I find that on the rare occasions that I feel more positive I am less likely to post. I am changing that with this post.

As anyone who follows my blog knows, I have Bipolar II and have been in a medication resistant depressive episode for almost three years. This is compounded by Generalized Anxiety Disorder, Panic Disorder, Agoraphobia, a Severe Sleep Disorder, and a few physical problems. I didn't know what happy felt like. It had been too long.

Since starting my Spravato medication treatments I have noticed a big change. Previously, whenever I felt down, I knew my depressive episode was crashing even further. One of the big differences I have realized now is that I can tell the difference between a depressive episode and just a bad day or two. That is huge for me.

For the first time in a long while I can smile and laugh with my mom, my daughter, and my baby grandson. I can leave the house for short periods of time. I can interact more. Hell, I even got my driver's license. What a change a simple medication can make in my life. I felt that I had tried everything, every medication, every treatment. Then I found Spravato. It is not a magic cure, but it is starting to make a profound difference in my life.

I owe this to my daughter and son-in-law who make it possible for me to receive my treatments by paying for them and making sure I have transportation since I am not allowed to drive myself due to the after effects. Without their help, I wouldn't be able to do this. People around me started noticing a difference even before I did. They pointed out to me how I was acting and the changes that had occurred.

So I just wanted to share with people that there is hope. I'm not saying my way is the only or even the best way. Just an alternative. I had almost lost hope. I had lost my way. I may not have found it yet, but I think I am on the right path, finally.

Just an update on rambling thoughts

So I'm continuing my spravato and getting good results. I feel better, would have more energy if not for my sleep disorder, and have stopped feeling suicidal thoughts. Even with my agoraphobia, I went to the grocery store briefly by myself for the first time in years. And I got my driver's license after six years! I start once a week next week and hope I continue to feel better with fewer treatments.

I have to give a shout out to my daughter and son-in-law. They pay for my copays for all of my psych appointments to get the spravato, along with providing me with transportation since I can't drive, and it's a long trip each way. If they aren't able to take me, then they pay for an Uber which is also expensive. They are so supportive.

And again a shout out to them both for my teeth situation. I used to have beautiful teeth, but years of medication, dry mouth, no dental insurance, no money for treatment, physical conditions that cause a lot of nausea/vomiting, my teeth have gotten horrible to the point that I can't eat much, and I never open my mouth around people. I can't even smile now that I feel like it sometimes because my jagged front teeth cut my lip. I only smile with my grandson.

My daughter and son-in-law are paying for me to get all the work done to have better teeth. It's going to cost between $2,500 and $3,000. I told them I will try to pay them back a little at a time as I can, but money is so tight. It will take about 2 1/2 months and eight appointments. The first one will be really painful as I'm getting my top four teeth pulled. Ugh. Just the shots in the roof of the mouth will hurt so much, but it will be worth it. I'm also getting six fillings, bone grinding, and upper and lower partial dentures. It's overwhelming, but I hope by Christmas I will be able to smile and eat. Going to be hard to eat without top front teeth for two months as I also don't have any molars right now. I'm not worried about how they look since they look so bad right now. This could be a life changing experience for me, and I am so grateful to them.

I'm also a little anxious about my babysitting my 10 month old grandson. I have been babysitting him since he was born, but mainly from 4:00 a.m. till about 11:00 a.m. most days which works great with my sleep disorder. But now I will be babysitting about 3-4 days a week during the day for about 10-12 hours at a time Now that he is mobile, I am worried about keeping him occupied and entertained. My mom will be helping on some days when she can. And I get so tired late in the afternoon, but being with him helps keep me alert and happy so I am glad to do it. Especially since my daughter and son-in-law do so much for me. They, along with my mom, are pretty much my entire support system.

So, that's where I am. Usually I post these blogs to pages, but I don't think I will this one so nobody may read it, but I just wanted to get my thoughts down. So many of posts have been down that it is nice to post something positive. Keeping my thoughts up about continuing to improve.

Thanks for reading.

Ongoing Treatment With Spravato (Ketamine) Update

So it's been a few treatments, and I'm feeling like I should update on how things are going. I actually talked to a journalist who reached out to me and asked me about my experiences for an article she may be writing, and it was pretty cathartic to tell the entire story to someone who really wanted to listen. Usually I just tell people the basics because that's all they want to know, and I don't want to be a burden with details.

My treatment resistant bipolar depression has been going on for about three years. Because I also have generalized anxiety disorder, panic disorder, severe agoraphobia, a serious sleep disorder, and a few physical health problems, it can be hard to isolate just what is happening and what is cause and effect. For example, I know my sleep disorder which causes me to get 2-3 hours of sleep a day most days exacerbates all of my mental and physical issues. If that were gone, it would probably help my other problems. And my anxiety exacerbates my sleep disorder and my agoraphobia, etc.

But in just trying to isolate my reaction to the spravato specifically aimed at my depressive episode, I can say that I am cautiously optimistic that I am starting to see some results. I actually don't hate every single day or minute that I am awake. I smile sometimes. I can talk to my family and friends more easily. I'm no longer filled with daily suicidal ideations. And a big thing, after six years, I finally got my driver's license.

This has not been a fast and simple "cure all." But I do feel a little bit after each treatment which is more than I can say for any traditional medication that I have taken for 2-3 months. And I do find myself somewhat pressuring myself to feel better as this might be my last hope for improvement. But I'm trying not to go there. I'm just trying to feel what is real.

The treatments have gotten less intense with each one. The first nuisance (and previously undocumented side effect) is a burning in the back of the sinuses and top of the throat upon inhalation of the nasal spray. That lasts about 15 minutes. The dissociation isn't nearly as bad if I lie down with a blanket and a book, even if I read the same paragraph ten times. I just go with it now instead of fighting it, knowing that it will be gone in about two hours. It does leave me feeling kind of groggy and drowsy for a while, but that's ok.

At my next appointment they are increasing my dosage. There are only two dosages. The first dosage, then the higher, stronger dosage. I expect that my side effects may increase again for a little while, but that's ok. And while there are no longitudinal studies past about six months, the plan is to go down to once a week in another few weeks then maybe once every other week if that still maintains the progress. We will constantly evaluate.

So to my daughter and son-in-law who are paying for the doctor appointments and providing the transportation (you can't drive after), I thank them very much. This wouldn't be possible without them. I'm moving forward with a little bit of optimism, which is more than I've had in a long time. Just that little bit is showing improvement, and considering where I have been, a little improvement goes a long way.

My First Treatment/Experience With Spravato (Ketamine)

Hi everyone. Since so many people have asked me and are following about the new drug trial I am doing with Spravato (a medicinal type of ketamine), I thought I would share how my first treatment with. And since I am awake at 1:30 a.m. (as usual, because I rarely sleep), I figured this was as good a time as any. Plus I have an enormous amount of stress and anxiety going on so maybe writing will help, although I'm only going to talk about the medication part.

My psychiatrist is the first in my metro area to be approved to use the drug, as it has newly been approved by the FDA for treating medication resistant depression. Although I have Bipolar II, I have been in a depressive state for about three years, and nothing is helping. The Spravato needs to be taken in combination with anti-depressants and mood stabilizers (or in my case Latuda and Lamictal). Everyone, including my doctor, was in the separate relaxation room (required for after care and monitoring) because I am the first and so far only patient they have using this medication so everyone in the office wanted to see its effects and how to administer it and such.

It is administered as a nasal spray, twice a week for the first four weeks, then determination is made on whether it is helping or not. I have only had the one treatment so no news on that part yet, which makes me feel a little bit like I let people down. Like people were expecting me to magically not be depressed anymore, but it's going to take more than one dose. The medication is expensive (about $1,000 per treatment twice a week) but I was approved for patient assistance and get the medication for free. I still have to pay my doctor copays, and since I didn't have the money for that, my wonderful daughter stepped in and said she would pay for them because, if not, she would always wonder if maybe this would have helped me.

There was a "practice nasal inhaler" to use to get the feel for how to administer it. It is pretty much a basic inhalation. You do one in each nostril, wait five minutes, then do another dose in each nostril. I knew about the extensive and expected side effects since about 70% of patients experience them. I just didn't know how it would feel.

When I did the first spray, the only thing I felt was a burning in the back of my sinuses and top of my throat. Uncomfortable but tolerable. No other feelings. Then I took the second dose, and things started to hit me. First I felt dizzy. Then I immediately felt like I was drunk and loopy. Then the dissociation started, and that was the weirdest part. A few minor hallucinations. But I was able to talk to my mom and daughter throughout. I was drowsy but couldn't sleep. Next time (Friday) I will try to immediately fall asleep after the dose, but I have a sleep disorder which keeps me from sleeping much. You have to have someone with you because you can not drive yourself or really do anything for the rest of the day.

The dissociation is hard to describe. It felt like I was outside my body. I was talking, but it was like it was coming from someone else. It wasn't really unpleasant, just weird. When I touched my face, it was like after going to the dentist and getting novacaine. When you touch your face, you feel it in your hand, but not in the area where it is numb. I felt like that, but numb all over. It lasted about 45 minutes, but it felt like hours. Again, not unpleasant like I was worried about, just strange. My blood pressure also spiked a bit (hence the monitoring) but not too much or for too long.

After about an hour I started to come down and feel more "normal". I could feel the effects wearing off. I was just lying in a recliner with a blanket on me, and my mom was there. You can't drive or do anything for the rest of the day. By the time I left, after two hours of monitoring, I felt mostly the way I usually feel, just tired and a little groggy. I came home, and after a while I was able to sleep for about an hour, but that's it. I've been up pretty much all night, and now my day has started. But that part is normal for me with my sleep disorder and not an effect of the medication.

So now I know mostly what to expect. I will keep going to the treatments twice a week for four weeks and evaluate and see if my depression is responding, at least getting me to a stable place. My psychiatrist was a little nervous, since I have bipolar not major depression, that there was a possibility for mania, so it is definitely contraindicated for Bipolar I. But I had no mania or hypomania.

That's my experience. I am trying not to get my hopes up that it will work when everything else has failed, but at least I am trying something new. And now I know what to expect, so it isn't so scary for the next time. I will keep you posted as I go along on how the treatments may be affecting my depression. Keeping my fingers crossed that it starts to help. Hope that gives you all some information if it is something you are thinking about trying or just wanting to know about my personal experience.

My Upcoming Trial With Spravato/Ketamine

So I just found out that I was approved for a new medication trial through my psychiatrist. It's called Spravato and is based in ketamine. That sounds scary since it's primary use was as a horse tranquilizer and a party drug in smaller doses, but it has been modified to help with depression. In my case, it's bipolar depression. I have been watching the clinical trials for two years, and now it has been approved in the U.S. It is showing great promise, but they are still working so the effects will last longer.

It is administered as a nasal spray in a psychiatrist's office, and then I will stay there to be medically monitored for at least two hours due to side effects. For the first month I will go twice a week, and then we will evaluate how it is working.

It is very expensive (about $1,000 per dose), and I was approved for full financial assistance which is the only way I could do this. Plus the doctor has to be certified, and mine is.

I am nervous about the side effects as they are very common (about 70% of patients experience them), and they are things like dissociation, sedation, feeling "drunk", etc. But at this point, I am willing to try almost anything that might help since my body is very medication resistant.

Wish me luck, and I will keep you all posted on how it goes as I go through the process of treatment. Fingers crossed.

Depression, Guilt, and a Long Rant of Self Pity

My brain and my emotions are completely fucked. Or maybe it's just me. I am a horrible, unlovable, unlikable person. At this point, I don't know if I am up or down, right or wrong, if it's day or night, if I am numb or want to die. I don't have a right to my feelings because I am too sensitive, too dramatic, I misunderstand, I don't listen or pay attention, I forget what I say or heard, I am just wrong. I feel guilty for everything, mostly just for being alive.

I don't know why I think sometimes that I can talk to people about the way I feel. I can't. If I do, then it is pointed out to me how wrong I am even when I have thought through what I have to say and try to say it thoughtfully. I am still in the wrong. I can't do anything right. I am a horrible mother, daughter, friend. I don't deserve love. I don't deserve kindness. I definitely don't deserve happiness and wouldn't know it if it hit me in the face.

Even with my depression and other mental illnesses, I rarely get angry or frustrated or resentful or upset at the few people in my life. On the rare occasions that I do, I try not to say anything and just pretend that things are fine. That's all anyone really cares about. The pretense of me being fine. But sometimes I do try to stand up for my feelings. Not often, but sometimes. And the result is always the same. I am in the wrong. My feelings aren't valid. I am mixed up. I don't make sense.

It's no wonder that pretty much everyone has left me except the couple of people to whom I am useful. Yes, they say they love me, but I don't really believe it. I am not worthy of love. I just try to be helpful and thoughtful and considerate, but honestly I'm probably doing it so they won't toss me aside, too. So they will keep me around as long as I am useful.

And with all of these feelings comes intense guilt over everything. I feel guilty for trying to say what I feel. I feel guilty for burdening others with my feelings. I feel guilty just for being alive.

Well, this has been pretty much a dark ramble with no point. I don't even know why I'm writing it. I just feel miserable, and it's not going away. I just need to keep my thoughts and words to myself from now on. I can't confide truly in anyone. I can just try to pretend. People are happy when I am pretending. They don't have to "deal" with me when I am pretending. So put on the happy face and keep on pretending. What a fucking pity party. I am pathetic.

Love Vs. Gratitude

I haven't written in a while because I've been really down.  One thing I've been struggling with is that I don't feel lovable.  Not at all.  I have a few people in my life who say they love me, but my depression has been telling me that I am not worthy of love, maybe just gratitude.  How do you tell the difference of being loved and someone being grateful to you?  I've had trouble differentiating between the two.

I haven't really talked to anyone about this, but it's been on my mind.  Here's my biggest example.  My daughter and grandson mean the world to me.  I would give my life for them without thought.  I know I love them with everything I have to give.  And my daughter tells me all the time that she loves me, and honestly she shows me, but my stupid bipolar brain tells me it's not really love.  It's gratitude.  My grandson may love me, but he is too young to know what either love or gratitude is, and I understand that.

With my daughter, I am her primary child care provider when she and her fiance are working.  I love this.  I am grateful to her for allowing me to do this despite my mental health, because she knows how much I love them both and do my absolute best, and that I would do anything for either of them.  So my backwards brain says that maybe she doesn't actually love me, that maybe she is just grateful to me for taking care of her baby whenever she needs me to and knowing how much I love him.

But when I truly think about it, I know she does love me.  It's my mental disorder that is tricking me.  She has never abandoned me when so many others have.  She calls and messages me every day, sometimes for hours, just to talk about life and everything and nothing at all.  She includes me but understands if I feel unable to participate.  She listens to me and never judges me.

And yesterday, she gave me the ultimate sign of love instead of gratitude.  I may be participating in a new drug trial for my bipolar depression which will require me to be at my psychiatrist's office a couple of times a week for hours and leave me unable to do anything for the rest of the day.  I told her I may not do this because it would interfere with me being able to watch my grandson whenever she needs me to.  It's my only purpose in life...to help them and love them.  I am willing to forego the drug trial in order to not lose her love and gratitude.  That is more important to me than feeling better because if I lost them, I would lose everything.

What she told me was not what I expected or could even comprehend with my brain the way it is.  She said that she would not allow me to forego a possible treatment that could seriously help me in order to make her life easier with babysitting.  She said if there were days I could not babysit, she would find a way with others to help fill in the gaps during those days.  She said that my long term mental health is more important to her than to have me think that she just wanted me around as a babysitter.  She loves me that much.  She said I would always be a big part of their lives, even if I have to take a day off here or there due to treatments.  It scares me to trust and believe in this because I feel it's ok for me to be needed but not to be loved unconditionally.  But she shows me unconditional love.

I have my answer.  No more thinking about it.  Just writing about this is enough to make me cry.  My baby loves me.  She really loves me.  I can believe this as fact regardless of what my mind may tell me.  It's never been about anything she has said or done or not said or done. It's always been what is in my head.  Maybe this selfless statement on her part will finally break through the boundary that I have in allowing someone to love me and being able to believe it.

It may seem simple, but to me this is a huge step.  I love her so much, and she makes me feel loved.

The Music Is Back!

Some of you who actually know me may remember that I have been a musician for most of life, about 45 years.  I am a well-trained flutist who won many awards and even had a full university music scholarship (which I chose not to take at the time, but that's another story.)  I even remember about 20 years ago, when I switched careers and started making serious money, my first splurge was to buy the flute that I had always wanted my whole life.  And all of the music that I could possibly want.  It always brought me great joy.

But what most of you don't know is that starting about five years ago, when my mental illness became so severe, I lost my ability to have music in my life.  Yes, I could still play.  I never lost that.  Even the muscle memory couldn't be eliminated.  But playing music, even listening to music of any kind, made me incredibly sad.  I don't know why.  Especially since so many people with mental health issues, especially anxiety, use music as a distraction.  But not so for me.  It has been a heartache for me that I can't seem to get past.  I've tried playing, listening to all genres in different environments, but always with the same depressing results.

Fast forward to now.  With Logan (my precious grandson) now 3 1/2 months old, I decided to start playing music on my phone with him when I'm watching him.  We started out just listening to see how we would both react.  He loved it!  Then I started singing along with the music (kids music, classic rock, pop, whatever), and I've always been a horrible singer (even though I can play, I can't sing worth a damn.)  We then progressed to dancing and singing to the music, with him lying on the blanket next to me, and me moving his arms and legs and hands and feet to the music while singing.  He loves it and smiles and laughs and doesn't care that Grammy can't sing worth a damn.

For some reason, this little man has given me back something that was always such a huge part of my life.  I still don't play or listen on my own, but it's become part of our evening routine to play music and sing and dance before bedtime.  It means so much to me.  And it's all thanks to him.  He makes me smile which is such a rare thing for me.

Maybe eventually I'll be able to start playing and listening to music again outside of doing so with him, but for now I'm just happy to have it back in my life.  Who knew what a little baby inside your heart could do to mend the pain?

The Others...Gone But Never Forgotten

I don’t know why I feel compelled to write this story today.  What may turn into a novel.  For those of you who know me, you know that I have my baby girl, my Angel Face, my Kassi, who is my daughter and best friend at 25 years old.  And, of course you know of her baby, my precious grandson, Logan, who is the light of my world.  What you may not know is about…The Others.

See, I have two older children, and between them five (at least) grandchildren, who I don’t know.  My older daughter, Brianna, is 32 and has a daughter named Cali.  I also have a son, Jordan, who is 30, who has at least four children named Hayden, Zeke, Ambelina and Sterling (maybe, I’m not sure).  He may have more.  I don’t know most of their ages or birthdays, except my oldest granddaughter, Hayden, who is going to be nine this year, as I have her name and birthdate tattooed on my leg from when she was born.

But these are “The Others”, “The Lost Ones”.  Lost, but never forgotten by me.  Up until 2012, when Kassi was still so young, Bri was my best friend.  Jordan was always troubled with mental health issues of his own, but we were still close.  They were both married by then with new children.  That was when my real downward spiral started with my own mental health issues so a lot of that year is a blur.

The one thing I do know is that I love all of them, and not a day goes by that I don’t think of them with love and pain and hurt and questions and even some resentment.  See, about 6 ½ years ago, they all left me.  All but Kassi, who hung in there with the strongest love and commitment and dedication to her mother, through the hard times and now the good.  But Bri and Jordan took their families and themselves out of my life.  To this day I don’t know exactly why.  I know there were some issues, but not exactly what they were.  I know I made some mistakes, but not exactly what they were, but apparently they were unforgivable.  That was 6 ½ years ago.  My pleas of reaching out in every possible way were ignored and disregarded.  My love was not reciprocated.  The only response, if any, were a couple of short missives to stay out of their lives, that I was toxic and not wanted and would never hear from them again.

It broke my heart and continues to break my heart every day.  That is probably why I hold Kassi and Logan so close, maybe too close, to my heart every minute.  Because they are my salvation and my only chance to make up for all of my many failures.  Plus I just love them so very, very much.  They give me value where I feel none is really deserved.  They give me unconditional love that I don’t feel entitled to but am so grateful for.

With Brianna, there has been really no contact in those 6 ½ years.  I tried for so long to reach out to her to no avail.  The only contact I had with her was when her sister got married almost four years ago, and that was just a brief email (where she called me Tracy, not Mom), and told me not to speak to or even acknowledge her at Kassi’s wedding.  I have no pictures of her or her baby girl to hold on to.  And with her I don’t really have any answers as to the why or the how.  She just cut me off without a single thought.  My first born.  Something I never thought could happen.  And that has been it for so long.

With Jordan, there was sporadic communication and visits for a couple of years but nothing for the last 4 ½ years when there were some issues that came up.  During those sporadic periods, I did get to know a couple of my grandchildren a little and loved them, but they were also ripped away from me many years ago.

I was never a perfect mother, far from it.  I made mistakes.  But unforgivable?  I guess so.  But there are parts that I don’t understand.  First of all, their biological father, David, gave up his parental rights to Bri and Jordan when they were 8 and 6.  He said he didn’t want to be a father anymore and wanted Kassi’s biological dad, Ray, to adopt them.  David didn’t want anything to do with them and cut them out of his life completely for many, many years with no contact.  I hated this for them, but Ray tried to step in.  At least until Ray and I divorced, when he basically abandoned all three of the kids, even Kassi, but especially Bri and Jordan who he no longer acknowledged as being legally his children even though his name is on their birth certificates.  Ray and Kassi still have a semi-close relationship, but it is far from what it should be.  I hurt for her and for them.  I supported and raised these children, with the help of my mother, with no assistance from David or Ray.

At one point, when Brianna and Jordan were mid-teens, David got in touch and decided that he wanted to communicate with them.  I never stood in their way, even though he legally had no right to them.  I let the kids make the decision.  He saw them twice, then accused them of stealing from him and didn’t see or speak to them again for years.  But then, somehow, when they were grown, he got back into their lives, and all of the past with him abandoning them was forgotten and forgiven, and to this day I think they have good relationships with him, although I’m not positive of the details.

Apparently, my faults were many and were worse than those of David, since he was allowed back in their lives around the time that I was dismissed and rejected.  It’s still a bitter pill to swallow.

And to top it off, these two kids (adults) have even cut off people who love them simply because they are a part of my life, specifically my mother, their grandmother, who helped raise them.  She certainly never did anything to them except to love them and cherish them as I tried to do.  Jordan even cut Kassi out of his life after a few years, although Bri and Kassi keep in touch.  I know that Bri and Jordan still have relationships with other people in my family, but I do not ask about them, and they are under orders to never talk to me about them or they will be cut off too, and I don’t want those relationships damaged because of me.  That would just be more guilt to carry.  Is there anything more guilt-inducing than a mother causing her children to no longer love her?

While I have given up hope of ever hearing from or seeing them ever again, I do hold a small hope that maybe I will live long enough for my grandchildren to grow and maybe I can get in touch with them and let them know that I have always loved and longed for them, especially Hayden and show her my old tattoo.  But by then they will never have known me and may not want to.

So while I am so lucky to have Kassi and Logan as such an integral part of my life, there will always be a tiny part of my heart that is broken for “The Others.”  The missing ones who are forever missed by their mother and grandmother.  These are not children.  They are adults in their 30s who made their decisions in their 20s and will not ever change their minds.  Maybe their children will someday want to know me.  I don’t know and don’t hold out much hope for that.  But maybe.

That is the story.  The story I cry about with my therapist every time I see her.  The thing that I will never get over.  The thing that broke my heart and can never be repaired.  The shame I live with.  I must have been one hell of a mother.  Kassi does everything she can to be everything to me, and she is.  She gives me all the love and support and compassion and understanding that I could ever need.  She is the best daughter in the world, and has given me the best thing I could ever want, a loving bond with my grandson, who I will always cherish.  Are there days when I worry that I will do something to fuck up those relationships and lose both of them, too?  Yeah.  My biggest fear in life.  I try to be worthy of their love of me and be there for them and show them how much they mean to me.  The fear of abandonment is real, but Kassi reassures me all the time that she would never do that to me, and I believe her.  She is not that kind of person.

So I live with the unknown of why and how.  I don’t question people in my life who do know “The Others” out of fear for their own relationships should something slip.  But I think about them every day and love them and miss them every day.  And wish there was some way to mend the hole in my heart every day.  But I have to try to accept.  After so many years, I have not yet learned to do that.  Maybe I never will.  I accept the blame, but a mother’s love knows no end, at least not to me.  And now you have the story of “The Others.”

A Letter to my GI doctor...physical and mental and physical and mental

I'm in the middle of a physical and mental health crisis.  I'm dealing with multiple doctors who seem to be trying to help but instead are treating me as a bunch of symptoms with no real coordination, and I need that so badly right now since my poor physical health is affecting my mental health severely and my mental health declining is affecting my physical health severely.  So I have talked to my psychiatrist and have an appointment with my GI doctor this week, and I decided to write him a letter to either read or have me read to him since I am so overwhelmed that I can't get to everything I need to say without breaking down, forgetting, and just getting anxious and crying.  So here's the letter:

Dr. Iyer – Thank you for fitting me in.  I appreciate it.  I will apologize in advance because I know doctors hate when you come in with a long list of issues, but I feel that I am a complex case, and I am sorry this may take more time than you had hoped for.  I hope you will listen and understand all of my concerns and try to see the full picture, not just a list of symptoms.

First, please take into account always that I am disabled with mental health issues that include bipolar depression, severe anxiety, panic attacks, agoraphobia, and Non-24 Sleep Disorder.  These are important to remember as they are always reflected and impact my physical health as my physical health in turn always impacts my mental health, both to a severe degree.  I want to be a good patient, but I also have learned that I have to be my own advocate to the extent that I am able.

After our last appointment and the scheduled Upper GI Series (which was extremely uncomfortable, nauseating, and verging on painful), I heard from your assistant a week ago on Friday at 4:45 p.m.  Maybe there was a miscommunication, but I clearly remember her telling me that you would be referring me to a surgeon for a hiatal hernia and that she would be calling me back at the beginning of the week with that information.  That left me all weekend to stress and overanalyze and overthink and research.  I know this is part of my disability that I work on with both my psychiatrist and a therapist, but it is part of me.

What I learned was distressing and caused me to mentally spirally downward while increasing my anxiety and causing my physical symptoms of nausea, vomiting, and pain to increase, which has been happening for two months and shows no sign of letting up.

Then on Monday your assistant called to say that you were not referring me to a surgeon, which surprised me and concerned me.  I do not want unnecessary surgery, but I also do not want to continue to live my life with these miserable symptoms that are affecting my mental health severely.  I have since read the results of the test which show a mild to moderate hiatal hernia and severe esophageal reflux along with a rapid movement through my system of the barium which seemed unusual.  She said you wanted to see me in 6-8 weeks, but I did not feel that I could wait that long so she fit me in even though finding a driver for the long drive here was a challenge.  But that is not your concern, I know.

So my primary concerns are, why did you change your recommendation to refer me to a surgeon and then decide not to?  I do think I would like a referral as a second opinion and hope that does not offend you.  I have started trying to make changes to my lifestyle and diet to try to help with my symptoms but have not yet seen any changes.  In fact, the pain that I am having has now increased from my upper abdomen into my chest, as well, sometimes mimicking the symptoms I get when I am having a panic attack, which then causes a panic attack.  It has taken me years to deal with my panic attacks and constant fear that I am having a heart attack, and the combination of these has only intensified the frequency and pain and fear.

My psychiatrist and I are also concerned that with the constant constipation/diarrhea/vomiting that perhaps my medications are not being absorbed properly and certainly not if I vomit shortly after taking them which sometimes occurs at random times.  I do understand that the constipation and diarrhea are a separate issue that may not be able to be resolved at this time, but just so you know, the diarrhea is almost daily for hours on end every 10-15 minutes.  The opposite happens if I miss a day of diarrhea and have immediate constipation which causes straining and that increases the pain in my abdomen/chest.

I did not fill the prescription that you sent in for Levsin (I think was the name) as my research and discussion with my pharmacist indicated that this was primarily for cramping types of pain in the stomach and intestines and colon and the side effects, while I know I may not get, are also nausea and vomiting.  This is not the type of pain that I am having.  So I do not have any medication to help with the pain.

I apologize for the length of this.  I feel this is the only way to truly get the help I desperately need.  Can you please explain your thought process on the potential for surgery, dealing with these major symptoms constantly, and the treatment plan as it is affecting both my physical health and mental health and has been for months now.  I was already brushed aside and insulted by one physician, Dr. Mahajan, and I really need someone on my side to help me.  I’m pleading with you.  Where do we go from here?  I just want to feel better, both physically and mentally, and my psychiatrist doesn’t feel that she can adjust my medications at this point with the symptoms I am having.  Can you please just talk to me?  I am not an idiot.  I have a bachelor’s and master’s degree so I am not cognitively impaired.  I just need to understand and have a plan of action to help.

Thank you for reading and/or listening to this long summation.  Again, I apologize for the length and for the time and hope with all my heart that you will take all of this into consideration in treating me.  I know my case may be relatively complex, and I need to have faith that you are a strong part of my team.  I can’t just be seen as a set of symptoms to be monitored as I have been dealing with so long, and my life has become a constant state of misery.

The Fucking Government Shutdown, the wall, the real deal with Social Security/Disability

So here's the deal from my perspective.  This whole fucking government shutdown is a nightmare for those of us in desperate need.  Because of my severe anxiety and panic attacks, I do tend to catastrophize and become overwhelmed.  And that's where I am right now.  Worried about the future as the impacts are already being felt by Mom and me.

First of all, the wall is fucking stupid.  It won't do anything.  More drugs, illegal aliens, and trafficking comes through sea ports, over the road trucking, and tunnels than ever walk across our border.  We allow plenty of immigration from "developed" countries than we do from this proposed wall.  Trump is a bully throwing a tantrum about something he lied about, saying Mexico would pay for this stupid, fucking wall in the first place.

Next, social security and disability are not "government handouts."  My mom and I worked hard for over 40 years to have a lot of money taken out of our paychecks to fund these payments.  This is OUR money, not the government's.  It is not theirs to play with.  And it is not welfare.  This is a fact.  The only "government handout" we receive is that Mom receives some food stamps/EBT each month because she only gets $800/month in social security.  We barely scrape by.  And now we are told that our food stamps will stop this month until the government shutdown is over.  And Trump is quoted (FACT) as saying that he doesn't care if it lasts months or years to get what he wants.  He is holding the most needy citizens hostage while he, the VP, cabinet members, secretaries, etc. all received a pay raise equal to more than half of what I make in a year.  So now we have to choose between eating, paying for medications and doctors, paying bills like utilities and such.  I hate him.  I truly do.  And while the government shutdown is not yet interfering with social security and disability, there is debate about whether this will be the case if the shutdown goes on past September.

I know we are not alone.  There continues to be a trickle down effect.  Supposedly those working without pay will receive retroactive reimbursement, but that is not the case for those who have been furloughed, as they can apply for unemployment to the tune of about $200/week.  Trump is quoted as telling these people (even our Coast Guard) to do odd jobs such as baby sitting, painting and carpentry for the landlords to help pay their rent.  He lives in a different world. 

And those who are going without pay and have been furloughed are not getting their health insurance paid, either.  Which is going to start impacting our health care system with hospitals being overcrowded, nursing homes struggling with patients who do not have payments coming in to pay for their care, and people such as those who are on dialysis at centers who do not have the insurance to pay for their treatment.  As my daughter is a paramedic for a private company, and my sister works in a nursing home, this may start impacting them at some point if this continues for very long.  Not to mention all of the patients, the disabled, and elderly, and children.  Our food banks are already drying up.

So, yes, this is a rant and vent.  You may not agree with my statements, but they are facts, not opinions.  Trump is a liar and a bully and a narcissist and a poor excuse for a human being.  Just giving you the view from the inside of this whole mess.  For someone with mental health illness already, this is enough to push me right to the edge.  I am scared for us.  All of us.  I have lost hope and have nowhere to turn.