Life begins on the other side of despair. — Jean-Paul Sartre

via Jean-Paul Sartre — The Vale of Soul-Making

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This is the sound of one soul speaking

I am no longer chronically undiagnosed. In fact, I have multiple diagnoses since my symptoms began over six years ago. I’m tired of writing about chronic illness. There are only so many posts one can write about how much it sucks to have a chronic illness. I’ve written them all. I want to write about something else now so I changed my blog title to reflect this.

The title “One Soul Speaking” came to me yesterday and I was excited to find that it had not yet been taken on WordPress. I intend to write about what chronic illness has revealed to me. I left my body and buried my soul years before I became ill. Throughout the illness I have had intermittent glimpses of my soul revealing itself. When this happens it brings me great joy.

The purpose of my new blog will be to support the writing of my book, a memoir. I’m writing this book for myself, so that I can tell my story, my truth, unfettered by the judgements that others have placed upon me. I’m not writing my book to make money, to be famous, to gain the acclaim of others, to lay claim on truth, or to legitimize my existence. I’m writing this book to give my soul a voice, a voice that was lost long ago.

This is the sound of one soul speaking.

The City

I keep writing, not finishing, not posting. I want my writing to serve me. I want it to make me feel better. I’m just going to write something and post it no matter what it is.

I’ve been angry constantly. I’m pissed at everything and everyone. Much of the time I feel filled with hate. I’m also convinced that everyone hates me. Maybe if I could figure out what I was angry about I could fix it and then I would feel better. I always think if I find the root of the problem I will fix it and feel better. It never seems to work.

I’ve gotten into the habit of wanting to take things to make myself feel better. But there are times when taking something (weed or kratom) doesn’t help with anything and often makes me feel worse. That is the place I am in right now.

I want to feel peace so desperately but I can’t find it.

I started having symptoms in 2010/2011. In 2012 it got worse. In 2013 it got so bad that I spent almost the entire year in bed. I think it was right around the beginning of 2014 that I began having short windows of healing. I remember the first one so clearly. I had been taking Doxycycline for two months to treat Lyme. I went into the city (San Francisco) to do a few things. The energy of the city inspired me, as it always does.

imag1844A makeup brand was having a promotional event. Suddenly I found myself in the middle of it. There were beautiful male glam experts, models, and thick clouds of hair spray. Everything was glittery pink and chocolate-brown. A woman asked me if I wanted my makeup done. I would normally say no, but I was caught up in the energy and instead said yes. She did my eyes and lips. For the first time in forever, I felt beautiful. I felt alive. I had my camera with me so I took a few pictures.

I went home and my partner told me that my eyes were gleaming.

The Psychological Gut Punch

I’ve been having a lot of emotions swirling around. Mostly anger and sadness. I go through these periods often. The anger seems to be related to feeling invalid and is directed at people who have done things to make me feel invalidated.

A friend has her elderly mother living with her and lives nearby. My friend went out of town and asked me to check up on her mom, bring her groceries, etc. I was happy to do so. On Sunday her mother gave me a list of groceries and asked me to come by at noon. I didn’t leave enough time to get distracted in the grocery store. So when I arrived at my friend’s house it was 12:50. This was after I arrived and forgot her paper and had to drive back up the hill to get it.

I brought my friend’s mom her groceries and paper. I apologized for being late. My friends’ mom said, “Oh, that’s OK. She (my friend) told me that you are ALWAYS late.”

“How nice”, I said, with a fake smile.

The interaction flustered me and I could feel the anger rising inside of me. As I drove away I was thinking about how the interaction felt familiar. I was in a situation doing something kind or compassionate for someone, and instead of meeting me with kindness, I was met with criticism. Criticism about something I feel ashamed of.

Time has never been my friend. I’m always trying to cheat it in one way or another. I misjudge time frequently. I don’t allow enough time to get ready to go somewhere, and then I am late. Or I am supposed to be somewhere at a specific time and I get distracted by something which also makes me late. Sometimes when I make a point of it, I can be on time. Other times I can try my hardest and still fail.

What bothered me most about my friend’s mom’s comment was that my friend felt compelled to say that to her mother. I realize that there was probably no animosity in it but it doesn’t matter. I often find myself on the receiving end of these types of comments from my friend. What I have realized about her is that she needs to put down people around her for some reason, perhaps so that she can feel better about herself.

This friend attended my son’s birth and I really wish she hadn’t. She stayed with us for two weeks and during that time on many occasions made me feel bad about myself. I had severe postpartum depression and anxiety and I didn’t need that. To this day, 15 years later, she still brings up incidents from that time and criticizes me for it. Most of the time it is for things related to my OCD symptoms. She loves to repeat the story of how I was standing in front of the grocery freezer unable to make a simple choice of what item to buy due to anxiety.

My friend filmed the birth and shortly after she and my partner wanted to watch it. I asked them to wait until I was ready to watch it. Giving birth was traumatic for me and I wasn’t ready to relive it. One day I walked out into the living room when they thought I was asleep. There the two of them were, sitting and watching the birth video. They scrambled to stop the video from playing. They obviously had no regard for my feelings. To me, this is the definition of betrayal.

In the last 15 years I have changed tremendously. I barely resemble the person I once was. But to her I will ALWAYS be who I once was.

I realized after the “always late” comment that the resulting feeling is the same thing I used to feel with my now estranged siblings. It is like receiving a psychological gut punch. It’s always done under the guise of “kidding” so that If I react in any way I will just be told I am being too sensitive. No matter what I say or do with these people, I am always the one who is in the wrong, even when I am attempting to do something kind.

The perp downstairs

Last night around 11:00 I started hearing loud noises coming from the apartment below me. At first it was really loud door slamming. It happened about three times. I just moved into this apartment, so I don’t really know what the norm is for noise in this building. It’s been really hot here and everyone has their doors and windows open with fans blowing. I thought maybe it was accidental. But it was extremely loud, as if someone was slamming doors in anger on purpose.

Then I began to hear shouting. I went out on my deck and I could hear their voices piercing the quiet stillness of the hot summer night.

“Whose fault is it!?” he yelled. BAM@!! Something was hit with a huge force, rattling the walls of the apartment.

I could hear her voice, pleading. She was explaining, appeasing, trying to reason with him. She was crying.

When something like this happens and I’m alone, initially I freeze. Should I do something? Should I call the police? I felt immobilized. I felt angry. I wanted to go and knock on their door and tell him I was going to call the police. I reconsidered. He could have a gun. I decided to walk my dog, who needed to potty anyway. I walked down the three flights of stairs past their door. As I reached the ground floor I saw a police car just parking out front. Relieved, I walked up to him as he was exiting his vehicle.

“I’m so glad you’re here! I didn’t call you but I’m glad someone did.” I pointed him in the direction of the apartment. On my way back up the stairs the officer was standing at their door and it was open. My dog thought that was an invitation and tried to enter their apartment. “Wrong door”, I told him, keeping my eyes on the ground.

The cop took the guy out front for a talking to. I couldn’t hear what they were saying. It was quiet for a while and soon the cop left. A short time later they started up again, there was a brief period of yelling and then quiet. I knew he was probably blaming her that the police were called. I knew that the level of risk to her was raised exponentially because he had been exposed.

After it was over all I could think of was the number of times I have been the girl who was pleading, cajoling, and crying. Multiple times with my first boyfriend in high school. A short time after that with my first girlfriend after high school. There was sadness and anger. Sadness that after a childhood filled with alcoholism and violence, I was compelled to recreate it again and again. Anger at the perpetrators who excelled at making me feel like it was my fault.

I’m going to report the incident to the management. It seems likely that this could happen again. Next time I will call the police as soon as I hear it without second guessing myself. If I see him in the stairway I will give him a death look that says, I’m on to you.

I’m not going to let him disturb my sanctuary.

 

The Checkout Girl

The feeling of betrayal haunts many of us with chronic illness. We have been dismissed and at times abused by the medical system. We have lost friends along the way because people either didn’t believe we were sick or didn’t like us in our unwell state. We have been forced to defend and “prove” ourselves to strangers who interrogate us in order to gain access to disability benefits. If we speak up or get angry about our situation, we are seen as “bad patients” or mentally unstable. This pot is constantly simmering and at times get so full that it spills over.

Last night I went to the grocery store to pick up a few things for dinner. Going to the grocery store is something I dread. The sounds and the lights are overstimulating. The walking and the lifting and the bending are difficult, and nearly impossible when I’m in a sea of symptoms. I’ve been struggling with increased symptoms for a few weeks now.

In spite of how bad I have been feeling physically, there has been a bit of an opening in my emotional state. Maybe it is related to the signs of spring I’ve been seeing and the sunshine. I’ve been feeling more compassionate with myself. But I seem to switch between two emotional states, I am either flat-line nothing or I’m pissed off and highly irritable.

So there I was dragging myself through the store leaning on the shopping cart for support. I had to cheer-lead myself through it by silently telling myself, “You can do this.” I stopped by the ice cream aisle to get some of my son’s favorite treats. Finally finished, I steered myself towards the check out line. As is typical for this store, there was a long line in front of the self-checkout where I usually go. I decided to go through the express line in part because it would reduce the amount of effort I would have to summon.

As I was unloading my items onto the conveyor belt, I noticed that I had accidentally picked up three boxes of my son’s favorite ice cream bars instead of two (they were BOGO). Instead of just throwing the box onto one of the gum and candy displays by the checkout like I’ve seen others do, I wanted to get it back to the freezer. Ice cream is sacred, and I hate to waste good food.

I attempted to get the check-out girl’s attention but she flat-out ignored me. Finally I said, “Excuse me,” with a pleasant tone. I was not the least bit upset. If anything, I was feeling relieved that the shopping endeavor was almost over.

The check-out girl turned to me, her face in a grimace. She had dark black hair and her eyebrows were sharp and angled. “I’m with another customer!”, she practically shouted in an acerbic tone. Her energy came at me like hot red lava. I was completely unprepared and unprotected. In her face I saw the image of all of the betrayals I have experienced over the last few years. I was hurt, but as it often happens, my hurt transformed into steaming rage. The pot was boiling over.

There had been no one in line when all of this began but now a sudden rush had created a line of several behind me. I angrily put all of my groceries back into my cart and proceeded to back out of the line, much to the dismay of the people behind me. I gave her the angriest look I could muster and said nothing. My instinct was to flee.

I went to the ice cream aisle and put the extra box back. I was shaking, more than my usual, and the anger was sitting in my throat threatening to choke me. “Fuck this,” I thought. I wasn’t going to run away from the checkout girl.

I returned to her aisle. I wanted to make her face me. As I approached her, I saw her talking to her manager in an exaggerated way and pointing at me. This made me even more pissed and I approached them. The manager came towards me. I’ve met him before, he seems like a really nice guy. But in this instance he was acting like a car salesman, attempting to use charm to appease me. He started saying things like, “I’m so sorry you are upset, Ma’am. Why don’t we go sit down and talk about this? I want to make this right for you.” I refused, getting back in line. He persisted.  “Why don’t you come over to my line, I can check you out and we can talk about this”. I ignored him. I wanted it to over. I wasn’t going to get out of line. I noticed that some of the customers in line ahead of me were staring at me like I was some kind of crazy person. Finally, he left.

Right when I got to the point in the line where I was near the checkout girl, another checker intervened and told the checkout girl it was time for her break, and that she should go outside. She had obviously been sent by the manager. The intervener was very kind to her coworker, acting as if the checkout girl had been mistreated by a customer. Keep in mind that at that point, I had said nothing to her!

I couldn’t help myself. While the checkout girl was in hearing distance, I said to her, “How convenient,” referring to her sudden need for a break. She looked at me and said, “Would you just stop,” in a sarcastic tone. I said, “Maybe you should have stopped before you started this.” Then she walked away, clutching a pink stuffed easter bunny she had sitting nearby.

Betrayed

POTS and PANDAS

I’ve started several posts and left them as drafts. Things are very difficult right now.

My son’s health problems have continued. I took him in for followup with his pediatrician the other day. She walked into the room, did not greet us, sat down and said, “What can I do for you guys today?” with the enthusiasm one might reserve for an unexpected tax audit. I was both irritated and confused. She is the one who told us to make this followup appointment to check on my son’s ongoing weight loss (about 30 pounds over the last 7 months). He has had ongoing nausea and lack of appetite. When he was down about 20 pounds, she told him if he didn’t put on weight she would consider hospitalizing him.

I was pretty surprised when she said that. It seemed like she was treating my son as if he had an eating disorder, telling him he needed to consume X amount of calories to avoid hospitalization. He shows no signs of an eating disorder but has a myriad of physical and emotional symptoms that are as of yet unexplained. As I’ve mentioned before my son is not an easy patient, and at times is aggressively rude.

I have been feeling frustrated lately with my lack of assertiveness. It seems like when I am in the medical environment (which happens frequently due to ongoing illness) I do not speak my mind. I’ve had some recent insight that when people offer to help me (doctors or others), I decide that I don’t get to have any boundaries. In other words, I don’t get to have opinions, voice my concerns, or say no. So when the doctor was giving my son and I attitude, I decided to do things differently and call her out on it.

“Are you upset with us for something?” I asked. “It feels like you are mad at us for something.” My son chimed in. “Yeah, it feels like you are mad at us”.

“I’m not mad.” she replied. “I don’t like it when I come into the room and you have your headphones on. So I’m sorry if I came across as brash. I feel like I have to brace myself before I come into the room with you…”

I thanked her for her apology and I apologized for not having my son remove his headphones before she came in the room. I would have but I was busy making a list of what my son’s current symptoms were. I think the headphones were a cover story for what she is really miffed about. The last time I spoke with her nurse the nurse told me that the doc had said she didn’t think she could help my son because he is non-compliant. She was referring to the number of times she had prescribed my son medications and he had to stop them due to severe side effects. We had already had a bad experience with another doctor at the clinic who admonished us for not vaccinating (save your hate). She accused me of using a “pick and choose” approach when it comes to the medical system. For instance, I don’t vaccinate but I was willing to try medications to treat my son’s ADHD.

All of that aside, the appointment continued. I reminded her of the purpose of the visit, to recheck my son’s weight. He was down another four pounds. His pulse and blood pressure were low, about the same as mine, which are always consistently low. I have Ehlers Danlos and Sjogren’s. She had the nurse check his vitals lying and standing. I wasn’t able to catch the numbers. She came back into the room.

She told us that she wanted to hospitalize my son due to the changes in his vital signs when he is lying to when he is standing. She explained that the local hospital doesn’t take patients who need to have their food monitored and therefore we would have to take him to a hospital ninety minutes away that had an eating disorders unit. She explained that she thought it was a good idea also because he could also be evaluated by a psychiatrist. She has been pushing this for a while now. Nightmare scenarios were flashing before my eyes. I’ve worked on eating disorder units and I know what goes on there. I knew my son would not respond well. I asked her if I could do what the hospital would do by giving him lots of food at home. She agreed to that option, telling us he needed to consume 4,000 calories a day, and to come back in two days to recheck his vitals.

I really feel like she is missing the mark here. But I agreed to follow her recommendations because I didn’t think it could hurt. We went and got a bunch of groceries and came home and made a food log. My son, being 14, decided to pursue it with gusto. He ate a full breakfast, a snack, and continued to try to eat some more items to the point where he threw up, involuntarily. I recommended we go slower, and realized that consuming 4,000 calories per day is no small feat. We made it to about 2500.

In the meantime I did some more research on what could actually be causing my son’s health problems. I thought before that he had PANDAS (an autoimmune reaction to strep or other infection). I think that could still be a possibility. But he has all the symptoms of POTS syndrome, which has a hallmark symptom of change in vitals from lying to standing. POTS can be secondary to both Sjogren’s (which I have) and Ehler’s Danlos (which I also have)  and my son has all the signs of Ehlers Danlos. She told me there is no other diagnosis to consider other than not eating enough. I disagree and I have the evidence to prove it.

I’m not an armchair doctor or psychiatrist looking up things on the internet and diagnosing my son. I used to be a nurse. I’ve worked in hospitals for most of my adult life. I’ve completed all of the necessary educational prerequisites to be a Physician’s Assistant including A&P with cadavers, Biology, Chemistry, advanced algebra and physics. I decided to become a clinical social worker instead of a PA.

This doctor is young and has only been practicing for a short time. She is a DO which I have found sometimes comes with a more holistic approach and sometimes means the person didn’t qualify for medical school. I know that sounds harsh, but really the way she has treated us makes it somewhat deserved.

The area I live in has very few doctors. I attempted to get my son into a psychiatrist and was told that the wait would be 8 months to one year. In the meantime I will not allow her to admit my son to the hospital and I will be seeking a second opinion.

 

The Undercut

I really hate it when someone tries to convince me that I don’t really want what I want. I especially don’t like it when someone tells me I can’t have what I want when there is no legitimate reason why I can’t. It happened to me the other day at the beauty salon.

I go to a nearby beauty school. I’ve used beauty schools for years because their prices are right, and sometimes you get lucky. Additionally the students are often really passionate about their burgeoning careers and it shows in their work. And finally, I like to experiment with my hair and I don’t need or expect perfection.

I’ve been to this beauty school before where I usually ask to be placed with a male student, preferably a flamboyant one. Gay boys almost always give good hair, and they are so damn sweet to boot. But all the boys were taken, so I asked for an advanced student.

She was young, pleasant and called me “Honey”. I didn’t like that so much because it made me feel like an elderly person. I’m old but I’m not elderly. I told her I brought a picture.

“Oh, OK…, let me see what you’ve got”. She gave me the kind of smile that said, “I don’t like clients who bring in pictures”.

I’ve had stylists like that before. They don’t like pictures because they think the client is going to be disappointed when they don’t end up looking like the model in the picture. I don’t expect to look like the model, I just like to experiment with my hair and pictures help me do that.

The picture I brought in was of a woman my age with an undercut. I didn’t know it was called that until she told me. It’s when the hair next to your scalp is shorter than the hair that lies over it. It’s the kind of haircut you would see on someone in their teens or twenties, not on someone who is older and looks like an advanced age soccer mom. Which is exactly why I wanted to get it.

As I was showing her the picture she started screwing her face up and said, “Wait…. you want what???!” I continued to show her the picture and how I thought it could translate onto my hair. “I’m going to have to go get my teacher,” she said, her mouth in a firm line. I knew I was in trouble.

The teacher came around. He looked at the picture and then said, “What I would suggest is cutting the back in preparation for a style like that, and then come back in two or three months and we can do the rest”.

I didn’t understand. I felt like the girl had told her teacher that he needed to come and talk me out of the haircut. She kept telling me that it wouldn’t look good. I agreed to it because I didn’t want her to give me a haircut that she was forced into.

She took me to the shampoo bowl, and when we got back to her chair, there was a young woman sitting diagonally from me who had the exact kind of undercut I wanted. I pointed it out to my stylist.

“Her hair is a lot darker than yours,” she pointed out. “If I were to do that to your hair, it’s going to cut off the color and the rest will be completely white”.

She said that as if I would have to agree that it was a bad thing. My hair is white, and its a really pretty white. I color it sometimes and other times I don’t. “I kinda like the white,” I said sheepishly.

She went on, “Also your hair is really thin and you know how sometimes when hair is really short, it looks like the person is bald?”

Apparently I couldn’t quite let it go. “Yeah, I said, but in the picture I showed you the undercut wasn’t that short—it wasn’t done with a razor…”

She was looking a lot like my teenager looks when he tries to tell me that I can’t possibly know anything about anything. “Let’s just finish this up and you can see what you think,” she tweeted.

She blew it out into a bob. It looked fine. Cleaned up elder soccer mom. No undercut.

 

And it continues

I’m going on two days after I took the last methotrexate, and I’m beginning to feel like saying, “I can’t stand this!”

I’m very weak and extra wobbly. My tremor has gone from noticeable to what feels like major. My whole body feels as if it is trembling.

I decided I was going to make my son some dinner. In this case, “making” means doing something other than taking something out of the freezer and zapping it. I finally had to sit down. I just couldn’t stand any longer. I’ve been on the couch for most of the entire day. I did finally go to the grocery store which was a huge accomplishment.

I started this post yesterday and couldn’t finish it. I was too exhausted and in too much pain.

This morning I woke up and felt only slightly better. The mental anguish that comes from this level of sickness is more than I can take. The last time I felt this bad was when I took antibiotics for Lyme. I can’t manage my minimal responsibilities. I can’t make phone calls. My thoughts are scrambled.

I’ve lost four days this week to methotrexate. I won’t lose another. I’m done with this medicine. I don’t have an Instagram account, but I like hashtags.

#methotrexatesucks