On my personal blog, I wrote an entry that actually had to do with something other than crazy. If you are interested, here is the site: https://everythingitriedwastaken.wordpress.com/. It’s about adventures in cosmetics and finding a foundation color. There is only a little crazy in there. –Michele
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.*******
TL;DR—I have been ill. Also this is a bunch of text. Swear I am going to try to put some pics in later but I don’t know what of……
So, yesterday I made my bed (this is not a metaphor, I promise). I did it in layers. (Still not a metaphor.) I stripped the bed. (IRL, I swear.) A bit later, I put on the fitted sheet. (I actually put on the fitted sheet—this really isn’t a clever way of comparing life to making the bed.) A bit later I did the next step. I have started Triple Sheeting, which is a hotel trick and has been GREAT for sleeping. *If you want to know the whys, email me and I will provide an explanation to satisfy your curiosity, or you can Google it. To Triple Sheet, you use a bottom (in my case fitted) sheet, tucked (or elasticized) in. Next comes a Flat Sheet, laid out from the top of the bed. On top of that sheet is a feather blanket, about 3 to 6 inches from the head of the bed. Lastly, there is another (THIRD) sheet, a flat sheet, laid on top of the blanket, starting at the head of the bed.
So this is where I left off. I put on a flat sheet, my feather blanket, and then the last flat sheet. I folded down the two sheets once, so that they now were as high as the blanket. I folded them a second time, this time with both sheets and blanket. I tucked them in, starting at the bottom. I shoved, I mean tucked, all three layers under the mattress at the bottom of the bed (I swear this is still not a metaphor.) Next, I moved to the sides. The extra material at the bottom corner was manipulated as if wrapping a present, allowing for a straight corner. (Now this is starting to sound like a metaphor even to me and I know it’s not.) I tucked all three layers in on the right side. I repeated on the left. I checked my heartrate (HR). I was at 168 beats per minute (BPM). I WISH that this was a metaphor but it is a literal, actual fact. Tucking in two sheets and a blanket raised my HR to 168.
Yeah, that’s not really okay or even in the neighborhood of normal.
So, when we last parted, it was May of 2018, almost a year ago. I had changed my mood stabilizer and gained some stability and a bunch of weight. But, it was working. I was feeling much, much better. I started going out. I was seeing friends for social reasons. I was getting my shit together. I was still a little tired but I had seen my doctor who made me an appointment with his favorite neurologist for sleep issues. It was great.
I felt so great that I both noticed a strange lump at a lymph node site and even made a doctor’s appointment to be seen for it. I felt a little silly—it was probably just caused by an infection and was nothing and as many of you know, I HATE going to the doctor to be told that it is “nothing” or is something that will resolve itself on its own (as in, I didn’t really need to go to the doctor.) But I vaguely realized I had had it for a while and I had J.R. check it and was reassured that umm, noooooo that shouldn’t be there. So I made an appointment with my wonderful PCP, Dr F.
Dr. F was “quite concerned” about the lump which is something because he is usually pretty easy going. He measured it at 2 cm long (normal is 10-20mm), firm, unmoving and not painful to touch. Those were all signs that this could be cancerous.
Dr F. ordered an x-ray which was done that day and looked good, and a CT scan. In a very unusual series of events when dealing with Dr. F., the request for a preauthorization for a CT was denied and he had to fight with insurance until it was granted. I had the CT done on May 23. Dr F. had the results the evening of May 29. He called me the 30th, telling me that I needed to see a surgeon, Dr. J. because it was likely that the lymph node needed to be biopsied or excised. The approval for that visit came that night. I called the next morning, (May 31 for those keeping track) only to be told that the wait would be several weeks to see one of the doctors for a consult. That afternoon, around 2, Dr. J’s office called me to ask if I could come in sooner—say around 4 that afternoon?
I juggled some childcare issues and on Thursday, May 31, 2018, my husband and I went in for the consult. I saw the nurse first, who asked me if I was particularly nervous or upset. I said only the normal amount for seeing a surgeon—why? She told me my HR was 118 after sitting in the office for 5-10 minutes. (This is a gun that is going to go off in a later act folks.)
But that day, I saw Dr. J, who was wonderful. He had reviewed my chart beforehand and we chatted, and then he did a physical exam. There is a negatively surprised look that people (doctors included) get when what they are presented with is not as good as they had hoped. I saw that look on his face. My husband could only see his back, but noticed when the doctor stiffened.
Apparently, the CT exam had revealed two enlarged lymph nodes. The one that I felt was 2 cm by 1.4 cm, while the other was buried a little deeper (so not able to be felt) and measured 1.8 by 1.4 cm. Dr. J’s physical examination confirmed Dr. F.’s—enlarged, firm, non-moving, and unpainful. Dr. J’s plan was to fully excise the lymph node closest to the surface. It sounded like a relatively simple procedure. Day surgery. In and out. Results within a week. He told me not to worry and that it wasn’t a pressing issue and turned me over to his scheduler.
Apparently, he had different words with her, because she told me that we needed to schedule surgery as soon as possible. Since it was Thursday, the surgery calendar at Cedars-Sinai was closed for additions on Monday, with the first openings available on Tuesday. She paused and then looked at me, and told me that she was going to try and get on the Monday schedule anyway because we needed to do this as soon as possible and this surgery wasn’t one that was just for “funnsies.” Monday wasn’t possible, but first thing in the morning Tuesday was by adding an additional spot to the surgeon’s schedule before his typical first surgery.
The surgery itself went well and I won’t keep you in suspense for the results. No cancer. However, the recovery was much harder than I had been expecting. The incision was close to 4 inches, which was a surprise. They had to cut through more than just skin. All of this probably should have been obvious to me, but for some reason I just felt like it was going to be this small little thing. I ballooned with water weight and the placement of the incision made walking and sitting, as well as clothing, painful. I had expected to be down for maybe three days. It took me closer to three weeks to be up and running.
While the no cancer part of the findings was GREAT, the rest was very frustrating for me. Reactive lymph node, reacting to something. What was not known. The main options were bacterial infection, viral infection, AIDS, or something autoimmune. For something that lasted for months, viral was unlikely. All of the examinations done and bloodwork indicated that I did not have a bacterial infection—nor did I have AIDS. Autoimmune? Just weird? Dr. F, after consulting with some specialists, went with just weird for now, with a keep an eye on it outlook.
The “just weird” thing bothered me. I like clear and clean answers and this wasn’t one. It certainly didn’t explain why I didn’t feel great. Plus now I was worrying about my heartrate. Now that it had been pointed out—my HR was high often. I mean close to all the time. And I was TIRED. ALL the time—to the point I was worried to drive and had to have my husband leave work a few times to pick up our kids from school.
I called a friend who has had health issues that she has had to fight through to get answers and is still looking for some of it. After listening to me, she suggested that I look at Ehlers-Danlos Syndrome, hypermobility type. And she told me not to quit asking questions until I had answers.
So I made an appointment to see Dr F. about my heart and fatigue on June 28. He did an EKG which showed tachycardia (high heartrate) but normal rhythm. He told me to come back in a week so it could be rechecked. He reluctantly prescribed Dexedrine, the stimulant I had been on in the past, but at half the dose. I had an upcoming appointment with the sleep neurologist and Dr F. said to ask him if there was some brain stuff that could be affecting the heart. I asked about autoimmune issues and if we should run an ANA test (it’s an autoimmune detector) but he said we didn’t need to go there yet.
I followed up the following week with a nurse visit. It took close to 8 minutes for my heartrate to stabilize enough to take a reading. It jumped everywhere from 97 bpm to 147 bpm. It finally settled at 117. Dr. F. offered an echocardiogram, but I decided to hold off for the moment. I really didn’t want one MORE issue causing tests and appointments. Dr F. prescribed a heart mediation to keep the HR down. He recommended I buy a blood pressure machine to make sure the medication didn’t cause my blood pressure to drop too low, because I have a history of very low blood pressure, though lately it had been higher. The heart medication didn’t last too long because it prevented my heart rate from going above 122. Random number, right? But even when I was huffing and puffing and about to blow myself down, my heart rate wouldn’t raise to accommodate the increase in activity. We found this out at the Grand Canyon. Good times.
July 26th was my first appointment with a neurologist who specialized in sleep disorders, Dr. R. He was wonderful. He listened to my symptoms, did the Epworth Sleepiness questionnaire (I scored an 18 WHILE taking the Dexdrine and Nuvigil.) He asked about a sleep study and I explained I had done one in the past but that it had been a disaster. It did not indicate Narcolepsy or any other specific disorder—just poor sleep structure. The study was a problem though, because I was made to go off ALL my medications (including mood stabilizers, anti-anxiety meds, antidepressants) and I just couldn’t sleep. My anxiety was too high. I was afraid of “failing” the test. I didn’t have my usual white noise to block out sounds that freaked me out. Just—disaster. I was, however, unwilling to repeat the experience because I refused to go off my meds again for any length of time, let alone the three weeks they asked of me before.
Dr. R asked about cataplexy, which I experience mildly. I also experience some sleep paralysis, hallucinations while falling asleep, and exhibit automatic behaviors at times. All of these are hallmarks of Narcolepsy, which is what doctors have been telling me for years but the sleep study didn’t show. Dr. R. had no compunction about making the diagnosis of Narcolepsy official without a sleep exam, based on the other symptoms. He told me to stay on my current meds and that he wanted to me to try a med called Xyrem. It is a very rare, very controlled medication that can be a miracle worker for many Narcolepsy patients. We started the preauthorization process for that plus he had a coupon for a free month. Paperwork needed to be completed by both of us, I needed to go through a vetting process with Xyrem and then I could start the medication. He also put “Schedule a midday nap when able” as part of my treatment plan, which meant it was in writing. I can’t tell you how much guilt that has put to rest. Now when I nap during the day, I reassure myself that I am just following my treatment plan. He also did a blood draw to check my B12, my homocysteine levels, Methlymalonic acid, and Vitamin D.
I asked Dr. R about the HR issue and he had nothing, other than it was likely autonomical and not directly related to the Narcolepsy. I asked hesitantly about Ehlers-Danlos Syndrome, hypermobile type (hEDS) but it isn’t in his wheel house at all but based on the quick flexibility I demonstrated as asked, he put in a referral for me to see a rheumatologist.
Another doctor. And while it is not talked much about in this account, I was still seeing my psychiatrist, Dr. W, about every 4 weeks. Seeing doctors and having tests and talking to insurance was becoming more of a ¾ time job rather than part time.
The results of three of the tests came back fine, though I was instructed to continue the B12 supplement. However, the normal range for Vitamin D is 30-100 ng/ml and mine was 5. So, I started a daily Vitamin D supplement.
–Side note—I have gotten some surprised looks and even side eye from people who also have a Vitamin D deficiency when I tell them I tested at 5, to the point where I have done screen shots of the test result. Then I get asked how I was alive. I shrug. Then I get asked how did I not feel like crap, to which I answer truthfully, I DID feel like crap. I still feel like crap.
So, up next was my appointment with Dr. M, a rheumatologist, to be examined for signs of hyoermobile Ehlers-Danlos Syndrome. Now, I had never really heard of hEDS so I broke my typical rule and looked it up before my appointment and looked at the criteria. Yup, seemed to fit. When I saw Dr. M, she did an examination and finished by asking if I had any weird scars. I didn’t, but I did point out these weird things on my foot, which are called Piezogenic papules. She said she didn’t know what they were but they didn’t have anything to do with hEDS but she would be happy to send me to a podiatrist. No. No thank you. No more doctors. She said that I had hypermobility, benign type and fibromialgia.
This is where I began to lose it a bit in my own mind. Fibromialgia is a real thing and people who have it have my sympathy. But I don’t have it. I regularly break toes without saying anything, I have coached with both a broken foot and broken ribs, I did gymnastics on a cracked wrist for 6 weeks, my parents were briefly investigated for child abuse because when I broke my collar bone as a child they didn’t take me to the doctor for a few days—because I didn’t cry about it. I guess what I am trying to say is that I am not super sensitive to pain. But okay, whatever, by this time I just wanted to leave.
I did leave, arrived home frustrated, and then went to Costco. I don’t even know why I went to Costco. I just did. I spend like an hour and a half walking around Costco and then spent about 40 minutes wandering the parking lot because I seriously lost my car. During this search and rescue mission, Dr M. calls me. She said she just couldn’t get those heel things out of her head and so she “consulted some medical journals about them.” (She googled it like the rest of us do, don’t lie.) Turns out they ARE a diagnostic symptom of hEDS and just kidding, I did have it. Also, I really needed to have
an echocardiogram done because hEDS affects connective tissue, including the heart, and I really needed to get back to physical therapy because my joints are, and will always be, weak. The only thing to do is build up the muscles around the joints to stabilize them. Also, I could never ever do yoga. Seriously, it is contraindicated. So now I never have to feel guilty about not doing yoga.
I politely turned down a referral for PT because A. I have done it before and knew what to do and B. my medical scheduling was turning into a nightmare.
However, by the beginning of September, my heart rate was really starting to worry me. I wore a Fitbit and my heartrate was over 90 bpm most of the day, and it was over 100 beats for a good portion of the day. And I wasn’t doing anything. Like I said, I felt like crap and was spending most of my days lying around on the couch.. There is no reason for a heart to beat over 100 bpm while a person is sitting around doing nothing. I approached my awesome PCP, Dr. F., and he ordered a Holter Monitor.
Basically, this is something that gets hooked up to your heart and you wear it around for 24 or 48 hours and record everything that you do. When the results came back, Dr. F was thrilled because I had Innappropriate Sinus Tachycardia. Basically, this means that my heart is getting instructions from the correct spot but it beats to its own drummer. Sometimes I have a high heart rate for no reason. Sometimes I get a rise in heart rate when most people would, only mine jumps up to 168 instead of 102. That’s the innappropriate part.
Dr. F. was thrilled because there were no arrhythmias or beat problems to worry about. At first, I was okay with that. But when I looked at one version of the narrative from the test, it mentioned “a significant burden on the heart” and that had me worried again. So, referral to the cardiologist for Dec 31.
So we are now up to the beginning of October. I had an echo of my heart and it looked great (and still does!) Yay for that great news!
And then at the end of October I broke the 5thmetatarsal in my foot. It was nothing big; I just stepped wrongly, tripped, and then stepped on the TOP of my left foot. I got crutches for the first time in my life, missed Trick or Treating with my kiddoes and went ahead and scheduled some physical therapy.
Randomly in November my GERD kicked back in. I got a gastric cocktail and was told to start taking Prevacid again. I stopped taking Xyrem because it was the culprit. I am trying to wait for everything to calm back down to start back on it.
The end of December rolls around, and I see Dr. EJ, my cardiologist. She was pretty concerned with the heartrate but was for a conservative approach to begin with (which I was in full favor of because I was already taking all the pills.) The plan: 101 oz of water a day, no more than 100 mg of caffeine a day, slowly increase exercise as tolerated, and follow up in three months.
And this is where I am going to pause. The New Year brings a few new problems and a few new professionals and (spoiler) a horrible episode that I am going to rant about for at least a page.
But at the same time, some wonderful things happened during this time too. I just am not including them in this post, lol. –Michele
***This post talks about weight and it is not in a particularly positive fashion.*** Also, a picture that covers more than a bathing suit but less than jeans and a t shirt.
I have often joked that I am going to write a weight loss book. I had it drafted in my head and everything. For the first time, I am putting into print. Are you ready? Here it goes:
HOW TO LOSE WEIGHT THE EXPERT WAY–What Your Personal Trainer and Doctor and Everyone Else Might Not Have Said to You.
Chapter 1: Drink more water.
Chapter 2: Eat less.
Chapter 3: Exercise more.
Chapter 4: These are no-nos: Beer, wine, cocktails and all other alcohol. Yes, I said wine too.
That’s it. That’s the entire book. I considered fleshing it out a bit, putting in the whys and hows (did you know that you BREATHE out fat? It’s true–look it up) but then realized most people don’t care. They just want to know what to do. Follow this and I am at least 85% certain you WILL lose weight.
But what happens when you CAN’T follow this? I had never really even considered that until November of 2017.
Growing up, I had a good relationship with my weight. Some might consider me a unicorn–as a gymnast in the ’90s, I never worried about my weight. Through high school, while my friends complained about their butts and thighs in swimsuits, I was just upset about my flat chest.
In college, I gained some weight in my senior year, thanks to fast food. When it became a bother, I cut out fast food and it disappeared. Same thing in law school. Same thing when I moved to LA and started working. Eat too much fast food (which is a weakness of mine) and I gained weight. Stop eating it and I dropped the weight. Simple formula. I was strong from spotting gymnasts and moving around beams and other equipment. I didn’t even “exercise” officially. (Hey Mom–thanks for the easy genes.). I had a son and then a daughter. I gained 25 lbs and 35 lbs, respectively. I lost the weight within a year each time.
(I know, so far I sounds like the person everyone loves to “hate”. Hang in with me for a little while longer.)
So, as many of you may know, I have bipolar type 1, peripartum onset. I have anxiety issues that my psychiatrist has lumped together as “anxiety” since they all have similar causes if not the same behavior. These really manifested after I had children.
I also have “hypersomnolence” which means I sleep way too much and am way too sleepy and have done things like fall asleep while driving–but the doctors have no idea why. When I say I sleep too much, I mean sleeping like 14-16 hours EVERY DAY, day after day. When I say I am too sleepy, I mean that it takes me at least an hour every morning to stop vacantly staring at things. I also mean that I fall asleep at inappropriate times, like sitting in waiting rooms and sitting at red lights. This has been an ongoing issue since high school. (I got tested for mono FOUR times in high school because the doctors kept thinking that I had to have mono to feel so tired all the time).
After I moved to LA, my new doctor eventually prescribed Provigil for me and it was GREAT. And then I changed insurance and it was no longer covered. At close to $800 a month, I could not afford to keep taking it. Instead I cycled through so many drugs and eventually landed on Dexedrine. Dexedrine keeps you awake. It is an amphetamine. It doesn’t solve for the sleepy–it just make you not feel it. I would set my alarm for 4:45 am, take the drug, and go back to sleep while I waited for it to kick in. It worked. It wasn’t awesome, but it worked.
I was only on it for a short while before going off to get pregnant and then being pregnant and then nursing and then getting pregnant and being pregnant and then nursing. After all that, I was ready to go back on.
So I did. It wasn’t too long before I realized a long term effect of Dexedrine is weight loss. I lost A LOT of weight. I am 5 feet 1/2 inch tall. My weight eventually slipped to 87 lbs. It was not healthy. I fought with my insurance to get Provigil covered. I wrote to them, my psychiatrist wrote to them, my GP wrote to them, my neurologist wrote to them. No dice. I had to see a nutritionalist. I began to worry because LA is filled with skinny people. I knew I was too thin and I didn’t want my mind to become used to this weight and to think it was normal and desirable.
Then towards the end of 2017 several things happened, all in a row. I found a cash price for Nuvigil (the successor to Provigil) that was affordable. I switched from the Dexedrine to Nuvigil. I quickly gained some weight, both because I was no longer taking the Dexedrine and because it had messed with my metabolism, slowing it down.
Then I began taking Rexulti. I began to feel a little better but I gained 30 pounds in a month. I explained that I was frustrated because I knew I was overeating. I ate candy by the bag fulls. I knew all I had to do was stop eating so much. My doctor told me calmly that in some individuals, Rexulti actually takes away the willpower to stop eating. He told me to stop taking it, then reconsidered and said to half my dose. If it was working and I stopped overeating, keep on that. If not, stop taking it and we would try something new. He then added another antidepressant.
I halved the dose and still felt good. In fact, with the addition of the new antidepressant, I was feeling almost decent. So I began to wage war on the weight. By this time, I had gained 45 pounds in 6 weeks. Through good planning (making sure none of my irresistible foods were in the house) and doing some unhealthy meal skipping, I lost 10 pounds.
I went back to the doctor. I was still feeling tired. He adjusted my sleeping pills, added melatonin and told me to see my GP because at this point, it was clear to him that the tiredness was physical and not related to any mental illnesses.
And then, a strange thing happened. A miraculous thing happened. If I took every single one of my pills, I felt…better. I felt…good. I felt more like myself than I had in 7 years. I was still tired sometimes but I was able to go places. I was able to talk on the telephone. I was able to clean. I was FUNCTIONAL. I was STABLE.
I was also gaining weight again.
Medicinal cocktails can be super tricky. The whole is, in my case, definitely greater than the sum of the parts. If I miss taking any single pill, I feel like crap again. If I miss my sleeping pill, I don’t just feel tired. I feel like utter crap. If I miss the Rexulti, I don’t just feel unstable. I also feel like crap. I currently take Nuvigil, Zoloft, Elavil (for sleep), Rexulti, melatonin and B12 (I have an actual deficiency), well as Valium as needed for anxiety. I take them all every single day. As long as I do, I feel like me again. If I miss any of them, I feel like crap again.
I weight 130 pounds. That might not sound like a lot, but it is a total weight gain of over 40 pounds in less than 3 months. It is not healthy weight. There is no muscle there. While I don’t want to go back to the days of 87 pounds, I don’t want to stay here either. But I don’t want to stop taking the Rexulti. I like feeling like me. I am not going to stop taking that cocktail.
Even if I resist the food cravings (I substitute in shaved-ice consistency ice, with no syrup–just plain ice–which hey, is like drinking more water!), I still have to deal with what Rexulti has done to my metabolism. Rexulti increases blood glucose and that leads to weight gain. Pair that with the beating my metabolism took after going off an amphetamine and it is little wonder that I am gaining weight.
I don’t have a great ending to this post. I have no idea what I am going to do. I am taking in more water. I am trying as hard as I can to fight the compulsion to eat, though I often fail. I am starting a twice a week dance class. But I can not, will not, stop the cocktail.
In the past, I basically existed on one of two speeds: Manic, when I could do all the things ever, better than everyone else and probably even save the world if I thought hard enough about it, and depressed, when I sat up only when I got uncomfortable lying down. When I was depressed, I did NOTHING or next to nothing. I picked up my kids from school. If I ran the dishes or washed a load of laundry, that was a gold star day. When I was manic, I made elaborate plans and then did many things while usually accomplishing nothing.
Those elaborate plans almost always involved long lists. I LOVED lists. I would make lists of things to do, I would make lists of routines, I would make lists of things to buy, I would make lists of my lists. I used fancy pens, special paper and always highlighted done items (crossing them off just seemed too negative for something I DID). I got pleasure in making the lists and dreaming of grandiose results.
I am now running at a new, normal-for-me-I-hope, speed. I don’t feel like I can conquer the world every day but I also am able to get dressed, put on makeup, visit friends–even ANSWER THE PHONE. Every day involves dishes washed and put away, at least one load of laundry, basic cleaning, and playing taxi driver. While my house is still not up to par, it is getting there, slowly but surely.
This morning, I set about making some to-do lists, which I have not done since reaching stable. I made a general to-do list. I made a bedroom makeover project to-do list. I made a playroom rearrangement to-do list. I used special to-do paper and a sparkly gel pen.
It was harder than usual to make the lists, but I figured that it was because I had full mind that needed to be dumped onto the paper. I got the lists done and dialed the DMV so I could renew my car registration. After hearing the expected hold time (25-31 minutes), I grabbed a load of laundry and put it away while I sat with the phone.
50 minutes later, I huffed at the phone when I got disconnected from the man helping me after I waited for almost 40 minutes on hold. I did get a complete load of laundry put away, I consoled myself. I picked up my list and highlighted the “7” after “P/A laundry 1 2 3 4 5 6.” (I have a lot of clean laundry waiting to be put away.)
I smiled as I capped the highlighter and turned back to the list, waiting for the swoosh of satisfaction and anticipation (for what I had just accomplished and for the rest of my plans). Instead, I felt. . .frustration. Overwhelmed. Weary.
This is the first time in memory that I have made project lists without the rush of manic energy. I had never realized how much of my excitement and enjoyment was coming from a manic reaction. I am staring at these lists, knowing that there is actually a chance that the things on them will all get done and that I will be able to finish the projects and chores that I have before me. But instead of excitement and thrill, these lists now represent work. Do-able work, but work nevertheless.
I don’t know that I love lists like I used to.
Blame and causation are slippery bastards and not easy to understand or assign. I hesitate to even consider the word “blame” here. I am 100% positive that that new baby girl, Piper, was the product of the induced labor–though she probably would have made an appearance, sooner or later, without the induction part. I am about 98% certain the the broken tail bone is a direct result of the vaginal birth of that 9 lb, 4 oz baby girl.
The broken back–that’s much harder to pinpoint. Less dramatically, I have a stress fracture in the 5th lumbar vertebrae. It almost certainly happened before the actual birth. It may have occurred in the preceding nine months. The gigantic baby bump pulling at my back could have caused it. But before that was a previous pregnancy and before that were years of gymnastics as a child and then years of coaching as an adult. Slippage and/or a stress fracture at L5 are not exactly common for gymnasts, but neither are they unheard of. It could have been a ticking time bomb, waiting for the added stress of that belly to set it off. For all I know, it was a ticking time bomb that had gone off during my first pregnancy, or even as far back as when I was a teenager. I just was never made aware of it until after Piper’s birth.
My broken mind is like my broken back. Again, less dramatically, I have been diagnosed with bipolar disorder, peripartum onset. Added to that is what my psychiatrist and I refer to as “general anxiety.” I show symptoms of social anxiety, general anxiety disorder (GAD), panic disorder. We just group it as “anxiety” since his treatment plan would be the same, no matter how many names or letters we gave to it. I will save talk about anxiety for another time, along with the sleep issues I have. There is only so much crazy you can talk about at a time.
So that’s the official diagnosis–bipolar, peripartum onset. Beginning before or after childbirth. I was diagnosed as having peripartum depression at first, and only after seeing a psychiatrist when I wasn’t getting better was the diagnosis changed. But when did it begin, really? I had postpartum depression with my first child, Finn. Was that actually misdiagnosed bipolar? I search memories from before I had kids. I was treated for depression, first in college, then in law school. Was that actually bipolar? The rush from all nighters pulled in school, working on projects. Was that “normal” procrastination or something different? The euphoria I felt at times, that I could win any speech competition, that I was the ultimate stage manager, that I could do ANYTHING. Normal excitement or hypomania? I could spend hours picking apart my previous life, trying to see if there was some indication of any manic states. I HAVE spent hours, picking apart my previous life, doing just that.
Of course, it could have be that I legitimately had postpartum depression and that it triggered bipolar disorder later.
I have finally come to the conclusion that it is impossible to know. And it probably doesn’t matter.
The most important thing for me to remember is that bipolar, peripartum onset differs from postpartum depression in that it isn’t going anywhere. I have bipolar disorder and barring some miraculous cure being developed, I will have to treat and manage my bipolar for the rest of my life. That probably means medication, every day, for the rest of my life. It means seeing my psychiatrist on a regular basis, for the rest of my life. It means that while I will hopefully reach and maintain “stable,” I will never NOT have to be vigilant about my mental health, for the rest of my life. It means that no matter how hard I try, my loved ones and those close to me and even those who have the slightest contact with me, will at some time or another, be affected by my mood disorder, for the rest of my life.
I continue to work with my doctors, and it seems that we have finally found the right mood stabilizer. We are still working on details and right now my life feels like a mess but it also feels like we are looking in the right direction.
I am privileged to have access to doctors and medications and other therapies. I am privileged to have a family who loves me and supports me and helps me. I am privileged to be able to not work. I am so damn lucky.
But I still have to deal with the reality that my mind is broken, every day, for the rest of my life.