I have explicitly written, albeit in a very general way, here about my medical struggles just once. This was years ago. But now that I have a diagnosis, I see a thread in my writing in addition to the thread I see in my daily life.
After nearly two years of working from home during the pandemic, I returned to my office job desk to find an old notebook in a drawer with an entry from 2012. In it, was a list of New Year's Resolutions. One goal reads: "Find out what is wrong with my stomach". So... better late than never? If you are a friend who has listened to my trials over the years, thank you. You might hear some more about them though as I continue to process it. In sum, my main symptom has been chronic intermittent abdominal pain on my right side. It is hard to say exactly when this pain began, but I know that I started looking into it with medical professionals around 2007 or 2008. It's been such a companion of mine for over a dozen years that I've named it my "side pain" or at other times, "Ursula" because it needed a villain's name. We like to joke in our house that our second daughter and I are a running dialogue of our physical symptoms. At two years old, she toddles around saying "I have to burp.... my thumb itches," etc. And former roommates have commented that I have a tendency to just say things out loud like "Hmmm, my toe hurts". But importantly, I do want to point out that for over a dozen years, I had a sharp, boring, drilling, pain that drove through the right side of my abdomen several times a month for several hours a day and I just sucked it up and went to work and sang in performances and did all the things I was expected to do. And no one could explain why. I point this out because my pain was intermittent, but for so many others who suffer from chronic pain, their pain is persistent and they just live their lives. When this pain was at its worst, I had it every day, accompanied by abdominal bloating and diarrhea with no clear relief or end point. If you saw me during these years, you saw me in pain at some point.
Notice how I said "I had it every day..."? Had. This story has a happy, if drawn out, ending.
This story begins in approximately 2008. As part of an in-hospital medical practice I am assigned a new resident for my primary care- a 22 year old with sneakers and freckles who, when I bring this pain and bloating question to him, asks if I have "ever heard of lactose intolerance". I decide it's time for a different primary care physician, because I'm tired of a revolving door and want to have a relationship with a doctor who knows me and my symptoms. When I first bring this all this to my new, highly recommended PCP, she tests me for H Pylori bacteria and lactose intolerance and I am negative. Still, some people have a separate allergy to other milk ingredients, so at this point, I go dairy free for a week, which is all it takes to figure out if there is an intolerance. Then I go gluten free for a month because that takes longer to decipher as an intolerance. Let me tell you that at the time, I desperately want these eliminations to work. The bloating and pain is at some of its worst and neither of these diets do anything. Next, I try high fiber and low fiber diets to no avail. I try a low oil and low fried food diet in case the pain is being caused by gallstones. I try a probiotic pill which makes the bloating worse. I try a different probiotic pill that makes no difference and start incorporating a large amount of dietary probiotics like kefir, kombucha, and kimchi. Still no change.
I have ultrasounds to rule out gallbladder issues and they find nothing. It is of note that every time I go in for an ultrasound, every tech and nurse at seeing my kidney stone which I had had since age seven says; "We found the problem! You have a kidney stone!" I would then point out that I am very aware of that kidney stone and that that is not likely the cause of sudden onset of pain. But I am sent to a urologist to talk about it, (first appointment being just a meet-and-greet because they are required to have an in-office visit, then another exam before they can order any labs...) and again to a nephrologist to talk about it. I am told that kidney stone pain would not be located there and would not present in that manner.
I have really vivid memories of doing what should have been a fun yoga/dance class with friends and being in such incredible pain, that I audibly groan every time we have to now switch sides of the body, dreading the next set. After every exercise class I go to, I go home and tell my husband that I feel like shit- it's a feeling of exhaustion and not quite low blood sugar, but similar; almost hungover. I joke a lot that I have never had that endorphin rush people talk about after exercise and that I keep waiting for exercise to feel like eating a piece of chocolate.
I go off hormonal birth control on a recommendation from my PCP to try that and the bloating, diarrhea, and pain go from daily to about twice a week. I lose seven pounds of water weight almost immediately. I now start noticing a pattern of pain at certain times of my cycle.
One day, I have a bunch of pico de gallo for lunch and shortly after, am experiencing terrible abdominal pain. The next day, I have a similar reaction again to raw tomatoes. Another day, I have fried green tomatoes with friends at a restaurant, and afterward, I can barely stand up the pain is so severe. This particular instance is the worst it has ever been. So I cut tomatoes, which helps the severe reactions at least. Explaining to people why I can't eat them is challenging because it's not exactly an allergy or specifically stomach pain and everyone says; "It must be the acid".
Next up, I am sent to an OBGYN because they have found a benign ovarian cyst on my left side when trying another ultrasound. When I ask her if this could be causing pain on my right side, her response is "maybe". Could this be endometriosis? "Maybe". In fact the entire appointment could be described as one giant shrug. (Should I have this cyst removed? Up to me, really). When that super insightful OB leaves the practice, I go to a different practice entirely and this one is much more helpful. She does not see a link between the cyst and the recurrent pain on the opposite side of the abdomen and she also rules out endometriosis. I tell her hormonal birth control made my pain worse and more frequent and she points out that that medication is usually used to treat endometrial pain.
Somewhere in here, I develop pain in a joint of my left foot that makes walking and particularly, walking downstairs difficult. I have written about this here. I wait 6 months to see a podiatrist who diagnoses me with osteoarthritis and sends me to be fitted for orthotics. Fitting them is time-consuming, they cost $450, and are ultimately not effective. In fact, they make the foot pain worse. An acupuncturist that I end up seeing for plantar fascitis in my other foot, says this is sadly, a very common story. This all seems unrelated, but it turns out, it isn't. At this point, I grow weary of making up work time for specialist appointments for a few months. This is a pattern that happens a few times over about a decade.
A few years into this slog, and with renewed vigor for getting to the bottom of this, I finally get a GI appointment. They send a resident in to speak with me first. He takes inaccurate notes, so that when the actual doctor I am supposed to see comes in and reads them, I have to correct her several times. She spends five minutes with me, feels my abdomen, says it's probably IBS and recommends a stronger probiotic than I have previously tried. I leave that long-awaited appointment feeling very discouraged. Even I know that IBS is a disorder that's concluded by a process of eliminating all other possibilities. The probiotic, which is over-the-counter but has to be ordered specially from the pharmacy, helps to a small extent with the digestive issues, but the pain persists.
I see another GI on a glowing recommendation from a friend who has ulcerative colitis. A thoughtful man, he decides that I have something called "abdominal wall pain", which is caused by an irritated nerve in the abdomen. This apparently goes missed by many doctors because there are only about two paragraphs on it in any medical textbook. He puts me on a high fiber cereal, saying the GI issues are likely unrelated and sends me to physical therapy. I go to a physical therapist with specific experience in this. After several weeks, she says she can tell I am still in pain and that she is not helping.
She sends me back to the GI, who sends me for a colonoscopy, which is negative for anything significant. He then concludes that his original diagnosis is correct and that he doesn't want to send me for more invasive testing. He is sorry that PT hadn't worked for it but offers not much else.
Important to note, the moment this man finds out in my medical history that my brother died young, he looks me in the eye, and assures me that people who present with this kind of pain don't just die. People who struggle with pain for years don't have some insidious cancer. He is not the first person to tell me this. I tell him I do not think I am dying. I just know I'm uncomfortable and in pain. I am not foolish enough to not notice the link here. He thinks that early tragedy has made me a hypochondriac. Many practitioners think this, I imagine.
At one point, I ask a friend about a nutritionist she saw who solved a chronic stomach-related mystery for her. I have a phone consult with this woman who wants to give me a whole work-up of food sensitivities and genetics, but she doesn't take insurance. She would be my practitioner and even available by text for three months and she wants $5,000 up front. I tell her that that is not possible.
In the years that follow, I again intermittently give up on seeking a solution to this. I give birth to our first daughter. I feel awesome while pregnant, except for a few weeks when I have intense abdominal pain in the second trimester. Ultrasounds show nothing and they won't look at my kidney or other organs because insurance won't cover it. It is the same unexplained pain I've had for years though, so I move on with my life.
An unplanned C section gets my ovarian cyst removed, and further confirms that I don't have endometriosis. After fluid on my lungs appears in the hospital, I am finally released home after a week's stay. Three months out, I ask my mom group online why I still have hip and pubic pain when walking. They respond that that's not normal and I get on a several month-long waitlist for a pelvic floor physical therapist because THANK THE LORD, my OB takes this seriously. This specialist helps enormously and I can walk without pain in my groin again, as well as engage in other <ahem> adult activities without pain...
When my daughter is two, I pass my seven millimeter kidney stone of 27 years, with surgical help (0 stars, do not recommend). Said stone was stuck in my ureter junction for 3 weeks before I could get an appointment to even look into it, even though I am a patient of this nephrology office. So I suffer through what feel like UTI symptoms in the meantime, but keep on going to work, to meetings, and rehearsals and just live my life this way. I even go to a rehearsal the day following my surgery. My abdominal pain persists after this procedure, so the nephrology department was correct that my chronic intermittent pain is likely due to something else.
My PCP, circling back on my abdominal pain, refers me to a doctor she has a lot of respect for, but I am warned that he is odd and has a gruff bedside manner. If someone can effectively treat me though, I don't care. She sends me over there because she still feels like it could be undetected gallbladder issues causing the pain and this doctor has done wonderful work on live scans of the gallbladder somehow. A friend in the medical field confirms that she knows of him. He started his own practice under a hospital umbrella and the hospital only let him do this because he is valued but likes to come at things in his own, different way. He is double board certified as a Gastroenterologist and Immunologist. His office is geared toward pediatric food allergy patients so I feel a bit out of place with all the little kids and the whimsical light fixtures that resemble a bubble tea cafe, but still hopeful. (I've also been the only non-pregnant patient in the waiting room for an ultrasound and the only non-male, non-60 year old in the urology office before, so I can deal.) In our first appointment he promises that he will figure this out for me.
Dr. L, we'll call him, independently comes up with the same abdominal wall pain diagnosis because my pain is too low in the abdomen to be the gallbladder. Instead of physical therapy, he injects my abdomen with lidocaine. We try this in his office two separate times and I receive no relief. He casually breaks my heart only once by saying, "You know, some people just have pain and we don't know why." I have heard this one before; this and other greatest hits like; "Have you tried Advil?" Yes... yes, I have tried Advil...
At this point, I become pregnant with my second baby and we have to hold off on injecting further things into my abdomen. He starts testing me for porphyria, (best known as the likely cause of madness in King James and several other royals). Porphyria would at least explain the hormonal link- that this pain appears more frequently at a certain time during my cycle and is exacerbated by certain hormones. At this point, he says I either have Acute Intermittent Porphyria or something called MAST Cell Activation Syndrome. To test for porphyria, I would have to do a 24-hour urine collection and analysis and he tells me I won't want to because it's annoying. Most people probably don't know what this is, but it's a test you do at home with a "hat" in the toilet all day to collect a large urine sample. I point out that with my kidney stone history, I have done half dozen of those before and I'd be happy to again if it gets us some answers. He says to complete it on my own timeline- there's no rush- and to just bring it directly to his office the morning after completion. I choose a convenient day for warding off the upstairs bathroom from my toddler. I bring the collection sample of urine via Uber to his office, which unbeknownst to me is closed for the week for his vacation. This is a low point, readers. I'm standing in Chinatown, making frantic phone calls with a giant jug of my own urine, trying to get it to a lab before it is unrefrigerated for too long.
Needless to say, I had to do the collection over again a different week.
When my porphyrin levels are slightly elevated, but the maverick Dr. L isn't sure whether the levels are statistically significant enough, there is talk of an at-home stool sample for comparison- this would involve picking up tin foil and other supplies from a lab. I ask what the next step after that would be. He tells me I'd be going to a geneticist regardless but geneticists are expensive and I'll have a high deductible. I don't have a deductible in my plan so I say I'll probably just skip to that then...
I put pursuing a genetics specialist off to give birth to my second daughter, which goes remarkably smoothly compared with my first. Then a pandemic hits and no one does anything medically superfluous for a while. As far as the abdominal pain goes, I seem to at least be in a good spot postpartum, where I'm not having a recurrence of pain. I mean, everything else is a complete dumpster fire; the pandemic, the state of the world... our family is a bit busy trying to stay sane with two small humans in lockdown... Still, I know that a return of pain could be right around the corner. And it is, unfortunately.
Eventually, in a telehealth session with my PCP, (a convention that has greatly improved my life with all the specialists I have been running late to for years), I ask to be referred to a geneticist, because if that's the end game here and because I have great insurance, let's just get on with it. She refers me to a geneticist and happens to tell me that his father is a famous practitioner who basically wrote the book on modern genetics and who was involved in the study that found a link between folic acid taken during pregnancy and prevention of spina bifida in the fetus. I am again warned that he doesn't have a super bedside manner, but she knows that I can be unfazed by this.
That office calls me back and says that the doctor's father knows more about porphyria and since they are in the same practice, he will see me. They explain there is a prevalence of porphyria in South Africa, where the father is originally from.
Dr. M is in his eighties, with a short stature but a large presence. He has an erudite-sounding accent and again, a gruff manner. He spends two hours with me, which is the most that can be said of anyone whom I have ever seen in a medical office. Most of the appointment feels hilariously like a cryptic quiz that I am failing.
He starts with a few questions about why I am there and I launch into my speech, (because I of course have one at this point), about my abdominal pain, bloating, and GI issues. I have an intermittent boring, drilling pain that accompanies bloating and gets worse at certain times of my cycle. He interrupts and says there is a more organized of doing this. We talk about general family history and then we go, system by system down a checklist. I have included just highlights below.
AM: Any history of high blood pressure?
Me: No, my blood pressure runs low actually.
AM: Have you ever had TMJ?
Me: Yes, my dentist had to address it and I worked on it with my voice teacher as well.
AM: Your voice teacher? You sing in a chorus or something?
Me: Um, opera choruses, sure. I'm a classical singer.
AM: Any other joint issues?
Me: Well, I have osteoartritis in my foot but it's not rheumatoid or anything.
AM: When did you develop that?
Me: When I was about 32.
AM: Wait. Did anyone stop and ask why a 32 year old suddenly had arthritis?
Me: Well, I had a bad car accident when I was 23 and they told me I pronate very badly when I walk.
AM: That's not a reason for arthritis. No other reason?
Me: I was told that the cartilage had just worn away.
AM: [Looks down in frustration and shakes head]
AM: Any other injuries of note?
Me: Well, right now I have tendonitis in my knee but that's a pregnancy thing, according to the physical therapist I saw for my pelvic floor.
AM: But you said your baby was a year and a half old?
Me: Yes...
AM: Do you ever feel dizzy upon standing?
Me: Uh, yes... sometimes I get that when I wake up during the night.... [pausing while he takes notes] ...actually once I passed out from it... during the day.
AM: ...Did anyone ever explain that?
Me: Well, the nurse on call- I called in because I was home alone with the baby and I was afraid of it happening again- said sometimes that just happens when you stand up; like a vasovagal response.
AM: [shakes head]
AM: How many times would you say you've fainted then?
Me: Ever? For any reason? I don't know... six times? (I counted later and it's actually closer to a dozen. I only fully blacked out about six times.)
AM: Do you ever have chest pain?
Me: Yes, actually. Probably about eight years ago or so I was sent for an EKG and a stress test, which were normal, though I guess I have a bit of a heart murmur but like, only sometimes or something because the next time, they couldn't detect it.
AM: Would you say you bruise easily? Do you find bruises and you don't know where they came from?
Me: Oh yes, but I'm also very clumsy.
AM: But to answer my question, you find bruises and you don't know where they came from?
Me: Yes.
AM: Do you have any allergies?
Me: Only nasal
AM: Seasonal?
Me: Yeah, except it's kind of all year long. It gets worse in spring and at the end of summer.
AM: Let me ask you this; when you get a bug bite, does it swell up really large? [Demonstrates on arm]
Me: Uh... yes. But mosquitoes love me.
AM: [Shakes head] So... yes?
Me: Yes.
AM: What about hives? Other skin issues?
Me: Oh, I have all kinds of skin issues. I get dry spots next to my eyes, rashes from face lotions, ski goggles, heat rash...
AM: Heat rash?
Me: Yeah, these itchy welts with a white center. I get them all the time on my wrists, hands, ankles, and feet and they told me it was heat rash.
AM: Those are hives.
Me: Yeah, that's what I said but here we are...
AM: Ok, you walk through the perfume section of a store. Do you like it or hate it?
Me: I don't have a problem with it.
AM: Do you ever wake up in the night having sweat through your nightie?
[Me, trying not to giggle at his quaint usage of the word "nightie"]
Me: Yes, I think it's hormonal though.
AM: [Shakes head again] Is your middle name denial?
Me: ...
AM: After exercise, do you ever feel light-headed, drained, or exhausted?
Me: Oh definitely, I feel awful after exercising most of the time. I keep waiting for that endorphin rush that people talk about, but that's never happened. Of course, I sweat funny too.
AM: Sweat funny?
Me: Yeah, I seem to sweat exclusively out of my armpits. My back and face will always be completely dry.
AM: Do you ever lose feeling in your fingers or toes in the cold?
Me: Oh yes, I have that Raynaud's Syndrome. So does my mother.
AM: Ok, as a child, could you do all the splits? Were you considered flexible?
Me: Oh definitely. The flexibility portion of the Presidential Athletic tests was the only part I was any good at.
AM: Are you the type of person who cracks and pops a lot when walking?
Me: My ankles are very loud and I can pop my one hip very loudly, I guess.
AM: And you mentioned clumsy family members?
Me: Oh definitely.
AM: Do you have an overbite?
Me: No. I never even had braces!
AM: Do you ever walk into a room and forget what you've gone in there for?
Me: Oh, constantly. Since I was nine years old. I never understood why people said that was a thing that would happen as I aged.
AM: Ok, I think some of your medical history is truncated here. For example, the allergy question. I mean, just looking at you, you appear to be in an allergic state right now. Have you ever been to an allergist? You have a large reaction to bites but you're not allergic to anything else? What about wool?
Me: Oh yeah, but isn't everyone?
AM: No.
Me: Oh, well I guess I'm allergic to nickel then too. All kinds of jewelry gives me itchy rashes.
AM: [Shakes head]
When we go over family surgical history, he stops and looks at me when I say my mother had bladder prolapse surgery.
AM: You said your parents were very fit. Why did your mother need prolapse surgery?
Me: She'd just had two children.
AM: That's not a reason.
Me: Isn't it very common?
AM: No.
AM: Is your mom also clumsy?
Me: Hahahaha... yes.
Next, I follow him and his monogrammed crocodile doctor bag into the exam room, where he looks at my heels and notes papules, which to my recollection, I've always had. I was unaware they had a name. He notes collapsible arches, which goes back to our previous conversation about plantar fasciitis. He pulls on the skin of my hands a bit. He takes a retractable ball point click pen, clicks the tip closed and drags it against the skin of my arm. He says he is going to check it again in ten minutes for a red mark. I say; "Oh, it'll still be there." He doesn't laugh. It's a tough room...
He has me take my mask down, [mid-pandemic], and looks in my mouth. He says; "You have a narrow, high-arched palate." "Oh yes," I say.
"You know that already?"
"Well, I'm a singer. We observe those sorts of things and their relationship to resonance in lessons."
"You also have an overbite."
Next, he has me do some flexibility tests, including a reach down to the floor with my palms flat. Very easy for me.
"That's not normal for a 38 year old woman."
"It is for me."
The red mark is still there when he checks it.
After a few more tests, he explains to me that I have a connective tissue disorder in the line of Ehlers-Danlos Syndrome. He goes on to explain that in EDS, the connective tissue doesn't function properly and can cause hyper-mobility, joint pain, partial dislocations, and propensity to injury. The TMJ, the chest pain, the arthritis, and the pelvic floor dysfunction are all related. It was likely inherited from my mother, (though he notes that my father with his athletic injuries and back problems also sounds like a mess). He says he will take a look at the porphyrin levels in my latest urine test, but that he would "eat his hat" if it turns out that I have porphyria. I have none of the other symptoms of the disease and so many of the symptoms of Ehlers-Danlos and MAST Cell Activation Syndrome. MCAS, as I have learned, is a disease related to EDS and has to do with an inflammatory histamine response.
"The main issue here is the abdominal pain, which has obviously effected your quality of life and no one seems to have correctly assessed other than giving you the completely bogus diagnosis of 'Irritable Bowel Syndrome' [he says this term with a clear amount of disdain/disgust]. I can help with the pain and digestive issues. I am prescribing you a histamine blocker- not an anti-histamine, mind you- a blocker. It doesn't work for everyone, but if that doesn't work, we try something else." There are other recommendations, including massage, compression bike shorts, and a support belt to relieve hip pain, because there are treatments for the muscular tightness that goes along with supporting the loose connective tissue of EDS, but no cure.
At this point, he looks at me and asks; "Why are you sad?" Tears are falling down under my mask. I tell him I'm not necessarily sad; I am simply emotional because no one has ever taken this much time with me in an appointment or addressed so much of my person all at once.
The next thing he mentions is that I needed to be drinking tons of water and taking Vitamin D and salt tablets daily. I remind him about my kidney stone. At the time of my last 24 hour urine collection, I had consumed approximately 4.9 liters of water when expected to drink just 2.9 for kidney stone prevention. (The nephrologist who'd gotten those labs had given me a gold star, said I should never expect another stone if I kept that up, and actually asked how he could get other patients to drink more. I had told him they just needed to have childhood kidney stones and be singers). Dr. M says that all this water has likely been masking some of my symptoms of dysautonomia - that I might be passing out more frequently without it. A salt tablet would help my body absorb the water and keep my blood volume up. This is why I felt so great while pregnant, because the mother's blood volume increases so much. This is also related to the exhausted, hungover feeling after rigorous exercise. These symptoms and the sweating issues are all generally related to dysautonomia or dysfunction of the nervous system that is frequently suffered by EDS patients. I would apparently also have worse "brain fog" without all the water, which is what his question about forgetting things was about, (anyone who's ever been in a music theory class with me might debate the point to which this has helped however). Please note, my understanding is limited to my still learning about all of this.
At the end of the visit, Dr. M reminds me that as a triple-board certified M.D., he knows what he's talking about. He says that patients frequently return, telling him he's changed their lives. He also mentions his frustration with his colleagues in the current healthcare system but by that point, I am pretty lost in my own thoughts.
Had I heard of Ehlers-Danlos syndrome before? Yes. A good friend had recently been diagnosed with it. She too, is a singer who, like me, has a bright-sounding instrument. It just never occurred to me that a narrow arched palate might have something to do with a shared syndrome. I do have some theories about singers and this genetic disorder that I would love to research more when I have time someday, (so maybe in twenty years or so). But never did I imagine that I had this disorder and that my abdominal pain was in conjunction with it or that the MAST Cell Activation Syndrome mentioned by Dr. L was related to this. It is also important to mention that EDS patients all fall on a very broad spectrum. Some people with hypermobile EDS just have some cool bendy tricks while others are truly disabled by joints frequently dislocating and a myriad of other injuries. And not all of them have MCAS.
I went home after that appointment and could barely speak for several hours, (rare for me). I was processing so much information. I told my husband that I was really only there physically for the day, because things kept popping into my head like; Oh, I guess this is why I need pillows under my elbows at night. I had long told people that I hyper-extend my elbows and without pillows for my arms, I wake up because I wrench them. He mentioned shoulder pain and sure enough, I've had that on the one side in particular for years. When I googled MAST Cell Activation Syndrome, trigger foods came up and tomatoes were at the top of the list. After this diagnosis, I was off in some other headspace entirely for a time.
Before I had the energy to explain the appointment to my husband, I just asked questions like;
"So your hips don't hurt on a daily basis?"
"No."
I just thought that was normal for people who sit at a desk.
"So do you feel markedly worse after exercise? Or just like, kind of fine?"
"I mean, sometimes tired, but basically kind of fine."
I can't tell you how many times I came home from an exercise class and told him that I felt like trash and he was sympathetic of course. But I truly thought that was normal.
I suppose I never paid much attention to the size of other people's bug bites. I just thought that mine were normal. In retrospect, people often look at my bug bites and gasp. Lots of people have allergies to things. I didn't think about mine much and other than elimination diets, I didn't look into it.
My OB has confirmed that she has another patient who has a hormone-related histamine issue. There is a correlation.
Importantly, in this multi-year process of trying to figure this out, there was an explanation for nearly everything, and if there wasn't, it was painted by medical professionals as something I wasn't supposed to be concerned about. "IBS is unpredictable". "Some people just have pain that is never explained." When Dr. M wrote up a report of his findings for my PCP, he wrote "Katrina reported that the cartilage in her second metatarsal had simply 'been worn away,'" in quotations as if to say "Who the hell told her this about her osteoarthritis?" Do I wonder at the extent to which my concerns were trivialized because I am a woman and women's pain is often dismissed? You bet I do. And I am a person of privilege with health insurance. The reason I never left my PCP is that she always took this seriously, even if she wasn't able to find the root cause.
After the kids went to bed, I tried to summarize the appointment to the husband as best I could. And I watched things dawn on him the way they had on me, (and realized that he was maybe one of a few people, myself included, who thought I might be overblowing things). But he cried along with me and said he wished he had helped put this together for me. But of course neither of us could have. We rely on the medical professionals to do this. And through my own dogged determination, I finally got some answers.
If people want to know why patients turn to alternative medicine, please see the above. I was very close to seeing someone I would have had to pay out of pocket for, just to receive validation and some sort of treatment. In the U.S. health"care" is tremendously overly specialized. It hardy mattered that my insurance allowed me to see practitioners under four hospital umbrellas since no one really looked at the full picture until Dr. M. In the year since my diagnosis, I have found that in Boston specifically, EDS patients are treated like drug seekers in part because practitioners don't have a working knowledge of EDS and because these patients are experiencing chronic pain during an opioid epidemic. If you are faced with an emergency situation, pediatric health issue, high risk pregnancy, or rare cancer, there is nowhere better to be than located near some of the best hospitals in the world. But for many others, the trail for chronic health issues can be quite nebulous. While it did not end up as my diagnosis, women who do have endometriosis go an average of seven to ten years before a diagnosis and treatment. I have a lot of anger still that this went on for so long. I was sent to a large number of people who essentially either patronized me or shrugged their shoulders. As a friend in the medical field aptly pointed out though, I went through a lot but I didn't go under the knife for this. Nobody opened me up solely to investigate only to find nothing concrete through surgery.
I am happy to write that May 11th marked a year that I have been on this histamine blocker. It did take several weeks to take effect, but I have not had a severe recurrence of the abdominal pain I was so familiar with for an entire year. And digestive issues are much improved, as well as nasal congestion. It's not an easy medication to take. It's a solution that I pick up in vials and drink diluted in water 4 times a day, 30 minutes before meals for proper absorption. But other alternatives have more side effects, so until they come up with something new, I will be on this life-changing drug in perpetuity. I also take an anti-histamine as a back-up in case I miss a dose, Vitamin D, and a salt tablet twice daily.
I continue to learn more about this series of related disorders. I have more questions that may or may not be answered. Is my kidney stone related to all this? No. Are my (thankfully infrequent) migraines related? Unclear. The fluid on my lungs after I gave birth the first time? Even Dr. M couldn't answer that one and was mostly annoyed that no one had given me a real reason for why I was so ill. The pelvic floor dysfunction? Likely related. The time a few years ago when I was stricken with pneumonia and had tachycardia and blood pressure so low that an alarm went off in the ER? Probably related. The arthritis in my foot won't be going away and unfortunately, there were signs of it appearing in other parts of my foot when I had an X ray recently.
My children have a 50% chance of inheriting the disorder, but can't be diagnosed until they are older. Diagnosis has to come through basically a certain criteria of hypermobility, as it was for me. So far, our younger daughter might show signs of some of my strange skin issues but we'll have to worry about it at another time.
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If you look closely, you'll see I'm using a walking stick here because I had broken a bone in my non-arthritic foot
For now, I'm living my life every day with much less pain. And I wasn't sure this day would ever come.
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