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.
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