I really only have one more stop in this “journey” of sorts and then will be caught up, able to talk about events that are actually happening as opposed to bitching about ancient history.
14 March, I had an appointment with my Rhumatologist, Dr. M. The beginning wasn’t
great, I will admit. Her nurse took my pulse by hand and said it was 78. I checked my Apple watch. My pulse was 113. I told him that and he chuckled, saying if my heart was going that fast, he’d feel it. I just flat out told him he was wrong but with a smile. There may or may not have been a touch of, “Well, bless your heart” in that smile.
He left, and I actually looked around to see if there was anything that would electronically take my pulse. I just didn’t want that wildly in accurate number in the record. But nope. Thus it stands—a field of 100+ bpm, punctuated by one at 77. (And you can bet I went out and got a pulse oximeter so that I can medically establish my pulse if I ever need to again.)
I didn’t really feel like I clicked with Dr M. the first time I saw her, but I really did this visit. She confirmed that my shoulder was impinged (I had done it the day before, no clue how, don’t ask) and offered a cortisone shot.. For the first time ever, I accepted one..
She stressed to me again the importance of PT or having some other way of building up the muscles to support my joints, particularly the troublesome ones.
She asked about some of the other appointments I had had. Talking about the TE hair loss, she verbally brainstormed about what kind of injury had triggered it and then jerked herself out of it. “I am talking a lot. That usually means I don’t know what I am talking about, something that isn’t my specialty. I am talking out my butt on the subject.”. Yup, now you know why I feel so much more connected to her. She likes puzzles, cannot help but brainstorm about what might cause things and told me that she was talking out of her butt. What’s not to like?
We talked about meds. The meds used for hEDS and fibromyalgia are basically little siblings of some of the meds that I am already taking. If my current meds aren’t stopping the pain, the ones she had to offer probably wouldn’t either. There’s a great cream she likes, but unless I have a documented arthritis dx, insurance would never cover it and it is not cheap.
We talked about the possibility of acupuncture and pool therapy. That is something I need to look into, insurance wise.
She ordered labs because that’s what doctors do. In her defense, she really wants to make sure that she has baseline numbers of various things because she is very particular about picking up on patterns based on changes in those numbers. For some of the labs, she only had one data point currently and even two is not going to be sufficient for pattern recognition. I will return in 4-6 months, get another set of labs and have the option of another cortisone shot if I like.
I did some heavy thinking after this visit. I was in the middle of writing these blog updates. I have been so focused on finding the magical “missing piece” that I have put my life on hold while looking for it. The more I thought about it, the more I came to realize that I am probably never going to find the magic missing piece.
Don’t get me wrong—there are some things that still are unexplained that bother me. The enlarged lymph nodes. The strange bruising. The mental mind fog that seems to go far beyond what my medications should account for. The trauma or injury that caused each round of TE. What the heck is wrong with my scalp. I am pretty sure that there is an answer out there that would explain all of it. But I am not counting on getting it any time in the future, if at all.
Just like a real jigsaw puzzle, maybe the piece got knocked aside and no one noticed.
Maybe the piece has been missing the whole time and the puzzle just came out of the box one piece short. Hell, maybe the cat ate the piece.
Deep down, I feel like there is something probably wrong with my autonomic system. It would explain the heart, maybe the brain chemicals, maybe the sleep problems, maybe most if not all of it.. But the autonomic system isn’t well enough understood to be able to prove, or even test, that theory.
Those are things I cannot control.. Now I am finally trying to move on to the things that I can control.. Better sleep hygiene. Better nutrition for myself and my family. Exercise. Working on joint stability. Drinking more water. Losing some of the extra weight I am carrying around, which cannot be helping my joints or my heart—or my anxiety.
Lowering my stress levels. Meditating. Easing my anxiety. Finding systems and ways to make my life work, as it is.
Taking my life off pause. Being in the moment. Connecting more with my family. Hopefully reestablishing some friendships that I have seriously neglected.
Being the person I am, this is really, really difficult to accept, but sometimes, you just have to clean up the puzzle and put it back in the box, even if it feels unfinished with one piece missing. But the damn puzzle is taking up the whole table, and I want room to be able to do other things.
CW: Some blood and guts and sores. Just kidding on the guts. But not the other. Oh and REALLY REALLY BAD HAIR.
2019. In the beginning of 2018, I had dubbed it my “Year of Joy.” I wasn’t making that mistake again. I quietly welcomed in the new year with hope that it would be better than last year and that we would finally figure out “the last piece of the puzzle.”
I had become quite obsessed with the idea of “the last piece of the puzzle.” I felt like there was some magic diagnosis out there that was going to solve all the rest of my problems, if I could just find the right doctor who could just find the right test and treatment.
I started PT, which was one more appointment added to every week. What some of you might not know is that I live “in LA” but I live in the Valley. My doctors are all Cedars-Sinai doctors, so that means going “over the hill” for every appointment. This drive can, and has, taken close to 2 hours one way, if I go at busy times. And if any of you see doctors regularly, you know–appointment time wise, you get what you get and you don’t get upset. So my 1 hour weekly PT in actuality would take up around 3 hours of my day. But I did it anyway.. I even got cute keychains.. One actually says, “Did It Anyway” and the other reads, “Didn’t Lose My Shit.”
But January 4th, I looked in the mirror in absolute horror. I had a small row of little red sores on my head.. I started to cry.
Okay, while this is pretty weird and sucky, I would not normally have such an extreme reaction. They were small, and if I didn’t have a previous experience with something similar, I would have figured I was having an allergic reaction to something. But in 2014, my hair got destroyed.
I started out with fairly normal hair. It was fine but wasn’t damaged. But out of no where, it fell out, it broke, it didn’t grow. My hairdresser said that it looked like I had gone through chemo, though I hadn’t. And the first thing I noticed before it happened was some small sores on my head. I cannot believe I am going to do this, but I am going to show you how bad my hair got.
It literally took until almost the end of 2018 to regrow all out to the same length and have the damage cut out. I immediately checked pictures, and now that I was looking for it, I saw that my haircut in October looked fine but my haircut in December showed some receding hair.
In 2014, we never did know FOR SURE what caused the damage. However, the worsening stages seemed to coincide with increases in doses of the mood stabilizer I was taking, Depakote. So I talked to Dr. W. and we switched to a different stabilizer. And then another. And then another. It took awhile to find something that worked, but the point here is that my hair was a fucking disaster.
I never knew before how much I cared about my hair. In fact is sounds really silly and superficial, to care about my hair that much.. But when I didn’t really have much and what I did have was a wreck, I found out that yes, I did care. Very much.
So, this time I was NOT going to wait around and see what happened.. I made an appt with my PCP, Dr F., immediately. I went in and we talked about changes in medications, (none), stressors in my life (lots) and what could be causing it all.. At one point, I flat out asked him if I was a hyperchondriac because I felt like I lived in medical offices. He assured me that while he did have several hyperchondriacs in his practice, I was not one of them. The hair loss, he explained, was probably caused by something called Telogen Effluvium (TE for sort because this is going to come up enough I don’t want to spell it out every time.) TE is caused by stress or trauma to the body. You can look it up but in essence, your body saves its energy by shutting down hair growth. When the body feels healthier again, it starts hair regrowth—and that pushes out all the old hairs, causing the shedding. However, what he was worried about were the sores on my head which had basically appeared overnight and were what he was now calling “lessions.” So, I got a referral to the dermatologist. The upside, he told me, was that when they biopsied (as they probably would) it would also confirm that the hair losss was from TE—which is great because it regrows and doesn’t scar.
I saw Dr F. Jan 18th. The first opening the dermatologist had was Jan 30th, with a Nurse Practitioner. I would have rather have had an appointment with an MD (I know NPs can be great but I had a BAD experience with one post partum and will never forget it). But this was my damn hair and I took it.. By that time, the first small sores were gone but two main ones were still there—and one was in about the same place as one from 2014.
NP A. started by examining my hair and head and then started talking about the hair loss. It was probably TE. I finally interrupted her and said that YES, my doctor and I were pretty aware and sure of that but he was worried about the open sores on my head (which I had now had for a month) and that wouldn’t heal. She looked at them and was honest with me. She had no idea what was going on. She would take a culture to make sure there was no infection. (I asked her if it looked like there was an infection and she flat out said no.) She wrote me prescriptions for an antibiotic and an antibiotic ointment just in case it was a bacterial infection. I asked her what it was, if it didn’t look like an infection. She told me she didn’t feel confident diagnosing it and wanted me to make an appointment with the doctor. She told me that she could do a biopsy on it, but if it was an infection that would be a waste of time and since I had to come back anyway, the doctor could do it. She also did a blood draw because that’s what doctors do.
The culture quickly came back negative which was good because I had taken the antibiotic once or twice and then stopped. One, I am anti taking antibiotics unless there is a bacterial infection. Two, they made me feel funny, I thought. I called the office and asked if my blurred vision, head pressure, generally feeling like I had a concusion would be a side effect. The nurse told me no and I assumed that I somehow had fallen and given myself a concussion and didn’t realize it.
Results came back showing my Ferritin level was 7. Low normal is 10 but apparently doctors really want to see something closer to 35 in women who still menstruate, so I needed to start taking iron twice a day.
February 26thwas the first date they could get me in to see an MD, Dr. A.
Let me be clear here. I have had basically nothing but good experience with every Cedars-Sinai person I have come into contact with, with only one or two exceptions.. But this was about to turn into a huge cluster fuck.
Dr. A. started the conversation talking about TE.. AGAIN.. I interrupted her pretty fast this time and told her that yeah, we already knew that, we were concerned about the lessions on my head that would not heal. She asked if I had taken the antibiotic and I told her no since it wasn’t a bacterial infection and I felt like I had a concussion when I took it and it went away when I stopped. Apparently, that is a serious side effect of that antibiotic and she told me the nexy time I saw a doctor to have them chart it as an allergy. (No clue why she didn’t add it to my chart on the spot.) She checked sores and said that they looked fine. Pink skin, looked to be healing, just don’t mess with them. (Which I was guilty of. The comb or brush would hit the spot and sometimes it was kinda damaging. But not two months unhealed damaging.) I asked what we would do about them. She told me she wanted to take a wait and see approach.
I had been seeing and waiting with these damn spots for two months now and I was done waiting and seeing and told her so.. It is one of the only times that I have told a doctor no, I want something different than what you are saying. She said she could do a punch biopsy. I said that I thought that sounded like a good plan and asked if it was overkill. She said, “Well, it’s not overkill for me; I do them all day long.” Great. Let’s do this.
So she numbed it, did the biopsy. Asked for gauze. Used sutures instead of foam. Asked for more gauze. And more gauze. And more. I started to become a bit concerned and asked if everything was okay. She assured me that yes, everything was fine—head wounds just bleed a lot. Which is true and I knew. She just seemed surprised to keep asking for more guaze for someone who does these all day long. Finally the stitches were in. She told me that her tech would clean me up and then waltzed out of the room.
The tech just stared at me for a minute. “Do you have a hat?” she asked. No. “Do you have hair ties?” Yes. “Good. You are going to want them.” WTF?
She then told me she was going to pour hydrogen peroxide over my hair and wipe at it with large gauze pads, which she waved at me. Ohhhh-kay. She did and wiped and wiped. The biopsy site was on the left side of my head, in front and above my ear and that is where she kept wiping. I finally mentioned, “I know my head is numb and so maybe I am not feeling this right, but it feels like there is blood running down the back of my neck.” She had me sit up a bit and assured me that my head being numb was not affecting the feeling. There was blood all down my neck. She dumped more solution, wiped more, and finally said she was done and I should pull my hair back. She then handed me a bag with gauze squares, about 7 inches thick, and some Vaseline. Instructions—use the Vaseline once or twice a day. Put some gauze on the site and keep pressure on it and it should stop bleeding within 20 minutes. Also, usually the rules are not to get the site wet for 24 hours, but I was going to have to wash my hair because of the blood so just keep the site as dry as possible.
So I pulled my hair back without a mirror, applied pressure and went downstairs to the ground floor. I had Ubered there and was planning on Ubering back home. I caught a glimpse of myself in a mirror. I had blood smeared across the right side of my temple (why there and not the left? Who knows.) My hair looked like I had dyed red streaks through it, especially in the back. I started to cry. I couldn’t Uber home like this. What the hell? What had happened? I had to call my husband at work and have him come and get me since there was no way I was going to ruin my Uber rating by looking like a murder victim or perpetrator.
My husband took me back to his work and stashed me in an unused room; he wasn’t going to leave me alone. My head hurt, I couldn’t stop the tears falling down my face, and I couldn’t think.
The bleeding did slow and had stopped by the time 20 minutes had passed but that did not make me feel much better.
Oh, Dr A—Dr. Ohara Aivaz, MD. Everyone should make their own educated decisions but if you want my advice, avoid this dermatologist like the plague. Also, and she also tried to sell me a $180/month supplement for my hair to make it fuller and richer. It is not prescription but only sold in doctors’ offices. So there is also that.
The biopsy results came back quickly.
Hope you’re doing well! Your biopsy results came back showing that the spot we biopsied was consistent with telogen effluvium (stress/iron deficiency induced hair loss). There was no evidence of scarring or autoimmune disease, which is great news. Please continue with the viviscal, iron, and meditation. I will see you back in three months…….I have copied your pathology result below.
SKIN, LEFT SCALP, PUNCH BIOPSY:
– Non-scarring alopecia with increased catagen/telogen forms
– See comment
COMMENT: Of the clinical differential diagnoses under consideration, the histologic
findings are most supportive of telogen effluvium.”
I have no idea what different clinical differential diagnoses were under consideration. I do know, however, that TE is a result of something else happening to the body. What caused it? No certain answers. Still have a sore on my head though—the other one is where she did the biopsy, so it is also still healing.. . I do know one thing though.. There is no way in Hell she is ever seeing me again, let alone in three months. Whatever piece may be missing from the puzzle, she doesn’t have it.
****Thank you to Mark for inspiring this title.*******