Moving, Live with real time updates

I should be packing right now. On Saturday movers will arrive to transfer my belongings from one apartment to another in the same complex. I haven’t had any help with packing and maybe I should have. I’m about fifty percent packed up. Not surprisingly my body is not cooperating.

The eagle talon pain is there on the left side of my body. The last two days I have pushed myself without rest and I am experiencing the effects of that. I haven’t been eating much. I’ve engaged in some adrenaline pumped shopping binges. I started drinking Frappucinos again as meal replacements.

The apartment complex I live in is filled with college students who unload their entire apartments into or beside the multiple dumpsters on the property. I have furnished my apartment with so many treasures rescued from the dumpsters. Now that the school year is over the dumpsters have been overflowing. I can’t seem to stop myself from raiding them. I get such pleasure from getting really good stuff for free. But I’m moving and I need to be packing, not raiding dumpsters.

I’m not kidding when I say really good stuff. Both my son’s and my wooden high quality bed frames came from there. Also, a beautiful modern desk in perfect condition. This last weekend I found a laundry basket with beautiful clean luxury linens in it. They looked like they came off of a bed fit for a princess. They were clean, but I washed them anyway of course. I’ve also gained beautiful stoneware plates and bowls, a brand new Wok, and expensive cutting knives for the kitchen. It’s astonishing what people throw away.

A friend offered to help me move. She can be very judgmental. It just seems to be part of her personality. She helped me move years ago and was critical of how prepared I was when the movers arrived. The thought of her judging me is in the back of my mind when I pack. I keep thinking I must do better than that move years ago.

The plan today is to stay in the moment. Pack one item at a time. When the inner voice says I must keep going I will take rest breaks anyway. My plan is to take one 15-minute break for every hour that I work. My mind says that is way too much rest for the task ahead of me. But the alternative is continuing to push and to create adrenaline to distract myself, which will lead to increased pain and fatigue.

And now, back to work.


Relative wellbeing

A couple of people have asked how I’m doing so I am posting an update. How is that for a nice boring intro line? Combined with my highly specific title it should make for a viral post.

Part of the reason I haven’t been writing is because of my obsessive need for perfection. But enough about that. Right now I’m not doing well at all. Just day before yesterday I was going to write a post entitled “Healing is possible.” Today that seems like a long forgotten dream.

I have not been able to give up Kratom. I seem to forget quite often that I have not just one illness, but several. The fatigue and pain at times seems unbearable. But I wasn’t thinking about that when I decided to give up Kratom. The symptoms persist. And without Kratom, what do I have to help? Cannabis helps, but not all the time. I don’t want to go back to pharmaceuticals.

My mind is in a dark place right now. I’m tired of fighting, trying to balance my thyroid, etc. Waves of sadness wash over me with great regularity. Many times it seems as if there is no rhyme or reason. My dreams are active and full of people from my past that have gotten lost along the way. Mostly family members. It feels very much like I go somewhere when I dream. I wake up exhausted and agitated.

It feels as if something terrible has happened or is about to happen. The right side of my brain feels filled with cement, pulling my neck to the right. There is a sense of urgency about trying to figure out what could be causing this most recent downward turn of events. Is it something I’m doing or not doing? Is it something I’m taking or not taking? How can I fix it? I can’t.

By the end of the day the muscles in the right or left side of my upper back tense to the point that it torques my shoulder out of position. It often feels as if I am being gripped by a huge steel talon. Is something attacking me on a psychic level? Often these symptoms come after a period of relative wellbeing as if to remind me that it is not safe to trust the universe, to relax, or to be happy. Healing becomes out of the question. It is very rare that a general sense of well-being is present. I call it relative wellbeing when I am not completely overwhelmed with symptoms and can do things like go to the grocery store and make dinner.

Sometimes I wonder, am I releasing myself from a self-inflicted prison and then re-caging myself because it feels the safest? Why am I always filled with so much guilt and shame?


Hope, Kratom, and Tangents

I must write and post something. I’ve written 3 or four posts now that remain unfinished.

About 4 – 5 paragraphs in, I decide I’m bored, what I’m writing about isn’t relevant, or I’ve gone off on a tangent and can’t find my way back. There is one thing that I want to communicate and that is that things do change.

Right around May 1st everything began changing hard and fast, for the

good. All of my unfinished posts have been about those things but I keep getting caught in too many details. It seems I always think that I have to tell everyone everything. This has certainly caused me problems multiple times. I’m starting to go off on a tangent here but I’m going to stop myself.

Multiple problems in my life have been caused by lack of money. That problem was suddenly solved when I was approved for Social Security Disability. I went into a shame spiral afterwords about the word “disability” but I’m getting less bothered by it. I’ve felt hopeless for a long time and I never thought this would happen. I originally applied in 2013. I also believed that if I were ever approved, the entire amount would belong to my LTD company. I was wrong about that too. Things really do change, even when you are convinced that they never will.

I’m moving into a different apartment in the same complex. The new apartment has a view of the wetlands and no one above (goodbye f”ing stompers upstairs).

After about 15 months of use it became clear to me that I am addicted to Kratom. I’ve been tapering off for the last month or two. It’s been hell. I’ve found Kratom addiction to be very insidious. I feel concern for the people out there who may be addicted and not know it. I believed it was safe “like coffee” so I was never concerned about my use. I went from using opiates for pain to using Kratom for pain. There were initially good results. When it started to get bad I didn’t notice. I have multiple diagnoses and symptoms so it was hard to sort out what was what.

English: Mitragyna speciosa leaves
English: Mitragyna speciosa leaves (Photo credit: Wikipedia)

There is a lot of controversy about Kratom on the internet. The Kratom contingent portrays Kratom as a miracle plant with few negative effects. Anyone who talks about negative effects on a reddit sub that is pro Kratom will immediately be reprimanded about keeping the public image of Kratom pristine. There is only one place to discuss kicking Kratom The Kratom contingent claims that only idiots who use huge doses get addicted to Kratom. The Kratom contingent describes “QuittingKratom” as a bunch of loonies, or worse, the Feds spreading propaganda to support their agenda.

It’s happening again. I just went on a severe tangent. I just hit the point where I was about to decide that I wasn’t going to finish this. Looking back at it, the first four paragraphs are worthless drivel. The biggest concern I have right now is that there are people suffering from Kratom in the same way I have. Secondary to that is my concern that the image presented on the internet about Kratom is not accurate.

If some Kratom lover stumbles upon this post, they will likely disagree with my view. They will say I didn’t take the right strains or use the right vendor. They will say I must have had severe mental issues before I started taking Kratom. They will tell me that I didn’t use it responsibly.

The voice of the opiate persists regardless of the form.

Drinking Poison

I found out on Friday that I am hyperthyroid, which explains why I have been feeling so hot-headed. It takes awhile for the dose decrease to begin to take effect so all I can do is wait for it to stabilize. In the mean time I continue to feel constantly triggered.

Yesterday I did something that was like pouring gas on the already burning fire. I reactivated my Facebook account. I signed off of Facebook permanently about a year ago. My Ex-partner is on there. My estranged siblings are on there. There are also people who are no longer friends with me on there. Ex-friends are friends with my Ex-partners. Facebook suggests I become friends with another Ex-partner. All of the people who trigger me are there in one spot, with their smiling faces and active “healthy” lives. By the time I deactivated my account again I was in a full on internal rage. It was like drinking poison. It doesn’t help to tell myself I should not have done it. I hope I don’t do it again any time soon. I hate it that once you are on Facebook, there is no permanent way to delete your account.

Yes, anger is poison. Please don’t remind me.

I have one friend who continually triggers me. We have a long history together and at one point we were out of touch for several years due to a conflict we could not get past. All of the things related to that conflict continue to trigger me in our current relationship. I am still me and she is still she. I don’t feel like I can talk with her about my feelings. I feel like that is the covert agreement we have with each other. When we attempted to resolve the conflict years ago it went nowhere. At that time she said some really hurtful things that run through my mind whenever I think about talking with her about it. And there were some really hurtful things she did while we were actively friends years ago that I never felt comfortable talking with her about. So I remain silent.

There are many things that she does that I react to. One of them is that she always talks about her life as if she is completely overwhelmed and that she is spread too thin by the demands placed upon her by the people in her life. She sees herself as the center of the universe for others and at times she seems to project this onto me. I begin to feel like I am on her to-do list of people who are dying for her attention. But my name is never anywhere near the top. There are always too many ahead of me.

The thing about it that bothers me the most is that it doesn’t feel true to me. This is a person who has substantial wealth. She has no children. She gets massage and acupuncture treatments weekly. (I admit I am jealous of this). She just got a new car (again, envy). She has the task of managing some of the properties that she and her partner own which takes a minimal amount of her time. I realize that her life and how she spends her time is none of my business. What bothers me about it is that I feel like she misrepresents her circumstances. The life she presents is a facade that hides the reality of a person who is increasingly self-absorbed.

When we do spend time together it can be rich and satisfying, but it hardly ever happens. I know from experience that if we do spend time together it will always be on her terms. We live 5-10 minutes away from each other but she never comes over, because she is always too “busy”. I know that I can never count on her to be there for me because I will be very disappointed. There have been many times when I have called her hoping to talk and catch up. Usually in response I will get a very long text message detailing just how overwhelmed she is. Within the message is the justification of why she will not be calling me back. It’s happened twice now in the last month. Even though she never returned my last call I went ahead and called her again last week. I didn’t hear back from her until last night. It was another long (paragraphs) text with details of how her time is being taken up by this person and that. She wrote that she was so busy “helping” a friend whose Dad has brain cancer, implying in her message that she was directly engaged in the situation, which I highly doubt. But it makes for a great “excuse”. It reminded me of her absence in my life when my own father died. She also wrote about how she is attempting to find more ME time as a new behavior. I wanted to write back that her taking ME time is not a new behavior. It’s a way of life.

She never asks me about my health or how I am feeling. She knows my son has been having difficulties but she hasn’t asked about that either. As I mentioned earlier, when we spend time together it is nice. And she has been there for me at times in the past. At this point I feel like our friendship has more negatives than positives. This is true about most of the people I had in my life before the illness.

If I were to talk with her about my feelings I know exactly what her response would be. She would point out the times she has been there for me and use that as evidence of why my feelings are invalid. She will tell me that I am too isolated to have a connection with reality. She will turn it around and make me feel like I should be ashamed of even suggesting such a thing about her of all people. She will suggest I am being insensitive to the severe demands of her life and she will list them. There would be no acknowledgement of my feelings.

This pile of people, the ones on Facebook and this friend are not the kind of people I want in my life. I want to find new people and someday I want to be OK that the old people are not there anymore. When I engage with these people I constantly doubt myself. These are the people who will SAY “I love you” but with their actions demonstrate that they don’t value spending time with me. Many of them act as if I’ve just chosen a bad path in life as opposed to being a person with a chronic illness. These are the people who I know say bad things about me behind my back. These are the people who claim I am too sensitive or too moody. These are the people who declare love and acceptance but demonstrate neither. I can’t function in that mindset and it makes me feel crazy.

All of this turmoil will likely die down when my thyroid levels stabilize. But these feelings remain and persist, not just about my friend but about those other people too. Why do I insist on holding onto relationships with people who make me feel devalued? Am I supposed to just accept people in their entirety and brush it off every time I feel hurt by them? Does anyone see me as valuable?

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.



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 Ticket

It’s been a very stressful few days. At the end of last week I found out my son needed surgery on his broken hand. He had the surgery on Tuesday. It went well and he is OK. He and I were driving home from the surgery when suddenly I saw flashing lights behind me.

I drive like a grandma. I used to have a lead foot. I was always in a hurry, always late, and always trying to get somewhere as quick as possible. Those days are long gone. So when I saw the motorcycle cop I thought at first that he couldn’t be after me. I was wrong.

I pulled over and he knocked on the passenger side window while I was digging through my glove box looking for my registration and insurance info.

I rolled down the window. “Any reason why you just ran that red light?” he asked.

“Whaat?! I had no idea…. My son just had surgery and….”

“I need your license and registration,” he said. I handed him my license. I remembered pulling my registration and insurance info out of the car awhile ago and most likely not returning it to the glove box. It could be in any number of random piles of paper that are all over my house. He lumbered back to his motorcycle with my license. He came back with the ticket. As we drove away I erupted into rage.

Earlier that day I had received a call from my son’s pediatrician informing me that they had tested my son for Strep, that the results were “normal” and therefore the diagnosis of PANS/PANDAS was ruled out. I’ve done my own research online. There is solid scientific information on the internet indicating that what they told me was untrue. My son’s pediatrician continues to inform me that she feels outside of her scope when it comes to my son and what she sees as his psychiatric issues. She wants me to take my son to a psychiatrist before she sees him again. There are no psychiatrists in the area that are accepting new patients that take my insurance. The best I can get is a waiting list that is months long.

I saw the look on my son’s doctors face and the psychologist we saw. They clearly see me as a mother in denial who doesn’t want to accept that her son is suffering from severe mental illness. I feel their judgment and I’m tired of it.

And then this cop, out of the blue. To make matters worse I had been pulled over by him a year ago for going 25 mph in a 20 mph school zone. I questioned his judgement then and I question it now. I have no recollection of running a red light. I will fight this ticket and will most likely lose. I’m not going to admit to doing something when I have no recollection of doing it.

The cop handed me a ticket with a price tag of $265.00. While doing so he lectured me about getting my driver’s license and registration moved to this state. I haven’t done it yet because I haven’t been able to afford it. Well now even the possibility of being able to afford it are out of the question.

To top things off I have been feeling extremely sick. After I somewhat recovered from taking the methotrexate I decided to start taking low dose naltrexone again. It made me really sick before so I decided to start with a really low dosage and keep it there for at least a month. I’ve been keeping the dosage low but I have been getting increasingly more sick with each passing day. Finally yesterday I had to stop taking it.

I’ve had a constant headache. My brain is completely fogged in. The pain all over my body has been intense and at times unbearable. None of my regular remedies are helping. The fatigue is incomprehensible. Sleeping does not make me feel rested. I have zero appetite and only eat because I make food for my son. I’m constantly weak and trembling.

After the ticket I just felt an explosion of anger at things I don’t believe I deserve. Why is all of this happening? What I am doing wrong to deserve all of this hardship? I know life doesn’t work like that but I want this nightmare to be over. I’m tired of just existing and basically waiting to die. I’m tired of chasing answers regarding the health of my son and myself and getting nowhere. I’m tired of the constant grey skies, cold, and rain here that make my symptoms and my son’s symptoms extremely worse. I’m tired of living in a town so tiny that you can get pulled over by the same small town overzealous cop twice. I’m tired of constant injustice. I’m tired of everything.

The Missing Piece

My son has been having problems for quite some time now. I noticed a distinct difference in him soon after he turned 13, so I convinced myself that his changes were a result of adolescence and puberty. Things improved for a while and then they got bad again, and now at 14, he is worse than I have ever seen him.

He has no interest in eating. He complains of nausea multiple times per day. He has a constant easily visible tremor. Every few minutes he takes a deep breath in and tells me he cannot get a full breath. He is at times deeply depressed and other times he will talk incessantly. He has engaged in severely harmful impulses to the point where he was almost arrested. He has broken his hand twice now in the same place after punching his desk in a rage. His anxiety and irritability are constant to the point where I rarely see the sweet soul I know him to be.

He has horrifying violent thoughts he can’t get rid of. He can’t sleep without medication. A few nights ago he started sleeping with me due to his fear of being alone. He has lost 12 pounds in the last two months and has dark circles under his eyes that do not go away with adequate sleep. He has obsessive fears about our dog dying and has started voicing compulsions related to keeping the dog safe. He moved the couch because he was afraid the dog might find something in it, eat it and die. He asks me to put our dog in his kennel so that he can stop worrying about where he is and what he is doing.

Last week I received a call from a school counselor. My son had been unable to attend class due to how he was feeling and sought out help. The counselor told me my son had been hearing voices. It was the same day as the most recent school shooting, and the counselor was extremely worried. When someone my son’s age talks about having hallucinations people immediately think of schizophrenia. Also people are worried in this environment about being held responsible for “missing signs” related to mental health and the potential for violence.

For a long time I blamed his problems on myself. After being so ill for so long, I felt flawed and broken and assumed that was affecting him. I was a wild child; so I also assumed it must just be the way adolescents are now. Additionally I had a lot of shame about going from being a good provider to being a disabled, limited income one. My entire goal in parenting was to provide a better childhood than I had and I began to feel like I had failed in that.

And lets not forget that as a lesbian raising a son conceived from an anonymous donor I was already an oddity in our society. I’ve always felt the reflection of that judgment hanging over me. I can’t tell you the number of awkward exchanges I’ve had with doctors, other parents, and school officials. To cut to the point, there were multiple opportunities along the way to make the assumption that I was a bad parent. And on multiple occasions I came to this conclusion for no reason other than I am who I am.

To top it off I had a difficult childhood myself which resulted in intimacy and trust issues. I had never been “mothered”. I was terrified that I would be the same mother that my mother was: self-absorbed, lacking a protective instinct, and detached.

I was filtering his issues through all of these lenses and as a result I was drawing the conclusion that my son’s issues were a direct result of my genetics combined with being raised by a very imperfect mum.

Last week we went to see the Orthopedist, who informed us that due to the lack of healing that is happening with his broken hand, he will have to have surgery. As part of the surgery screening process he had to have a nose swab done to detect Staphylococcus. I was surprised to find it came out positive, but learned that it’s not uncommon. As a result he was prescribed an antibiotic ointment for his nose. These are all precautionary efforts to avoid infection during surgery.

While I was looking into the Staph thing, I came across an article on PANDAS. PANDAS is short for Pediatric Acute-Onset Neuropsychiatric Syndrome. To put it very basically, it is an autoimmune reaction related to a Streptococcus infection.

Once I began looking into PANDAS more I found that my son has all the symptoms. I strongly believe this is what is going on with him.

I started thinking about my own history. I developed sudden onset OCD at the age of 13 (this is the primary symptom of PANDAS). I had strep throat at the age of 18, which means I am a potential carrier of the bacteria. My paternal aunt died in childhood due to Scarlet Fever (from Strep). Another paternal aunt had Sydenham’s chorea, also caused by Strep. My brother died shortly after he was born due to heart defects of an unknown cause.

The likelihood of PANDAS increases greatly when the child’s mother has an autoimmune disorder (DING).

I have been seeking behavioral health treatment for my son due to his symptoms. He has a therapist, and most recently we met with a psychologist. My son is convinced he is Bipolar. His Psychologist scheduled a test for him tomorrow at three to try to determine what category his symptoms fit into. I’m going to delay the testing until my son has been evaluated for PANDAS. I’m going to speak to his pediatrician about my concerns. If she blows me off I will seek out another provider.

I can see now how my perceptions about myself and my history affected how I viewed my son’s symptoms. It’s hard to see things clearly when I often feel as if I am fighting for my life due to my own illness.

I feel like I understand now that this is not normal adolescent behavior, or the progressive outcome of a severely troubled soul. I know my son better than anyone else. None of his current symptoms are consistent with who he is. This time, more than ever I will trust my mother’s instinct and seek out proper evaluation and treatment for my son.

Here is a link to information about PANDAS/PANS if you would like more information.

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.