Riding the Medical Mystery Tour is SO MUCH less fun without the Beatles.
This is her story:
Oh how I loathe going to the doctor’s office. Unless I’m loaded up with snot, like I am today. When I’m loaded up with snot, I can get something to help the snot go away. When I tell the doctor that all the snot in my head is drowning my brain, he knows what to do to help.
Any other time I go to the doctor? Well… That’s an entirely different story all together.
Over the last six or seven years, I’ve lived with non-stop pain in the lower right quadrant of my abdomen. I’ve been poked, prodded and made to drink some of the nastiest shit in creation. I’ve had multiple exploratory surgeries and damned near every narcotic known to man. I’ve received FOUR different diagnoses for that could contribute to my chronic pain (PCOS, Endometriosis, Diverticulosis and Interstitial Cystitis), but I’ve never been given any kind of permanent clue as to what can be done to stop the pain. I’ve been told that I can’t have such and such treatment for one diagnosis cuzz I’m being treated for another diagnosis. SO.MANY.YEARS. of never-ending bullshit have pretty much jaded me against much of the medical community.
Imagine my dismay to realize that it was going to start all over again.
I’ve been constantly dizzy since mid-January. Interestingly enough, it started about a week after I turned 30. I’ve had the continuous feeling that I’m on a boat and not in the “I’m on a boat mother fucker! ON A BOAT!” kind of way. (Which sucks cuzz I used to like being on boats, mother fucker. ) Went to the doctor, who poked and prodded and couldn’t figure out a reason for the feeling, so he gave me some anti-dizzy shit and sent me on my way.
The day before Valentine’s Day, I decided to add passing out to the mix.
After many different tests, I’ve been diagnosed with Orthostatic Hypostension, which means that when I change positions (laying to sitting, sitting to standing), my blood pressure bottoms out and I wake up on the ground with no clue what happened. (Well, I don’t pass out every single time, but the potential is there.) As for the dizziness that never goes away? No clue.
I’ve had MRIs, CAT scans, heart tests… All to no avail. I get to trek on down to the University of Michigan at the end of October to see if maybe they can figure out what’s going on. So far, the only thing I’ve been able to find that fits all my symptoms has been MdDS, which apparently is very rare and can last anywhere from a few days to decades. Color me fucking excited. o_O (And just to clarify, I hadn’t been on any long trips in planes, cars or anything else, but I was INCREDIBLY stressed out due to finding out some things about my boyfriend/fiance that damned near destroyed me.)
Oh! But wait! It seems my body decided to throw another curve ball into the mix!
During all my testing to see why I’m always in pain, I was told that I’d never be able to have another child. My kidling is awesome, so while I hated hearing it, I figured that I’d at least been able to have one child, so I was lucky. Any time I was asked if I was gonna have another one, I’d always say I didn’t want anymore.
To me, it was easier to deal with the judgment of being one of those mothers than to have to deal with the looks of pity and the empty condolences from people who never had to deal with the reality of not being able to choose whether or not they could get pregnant. After six years of being told it would never happen and having all kinds of unprotected sexing with no babies, I had pretty much come to terms with it.
Except in June, I found out that I managed to get myself knocked up.
I had a miscarriage scare in my seventh week, but things seem to be moving along well now (17 weeks). The thing that sucks is that being pregnant seems to lower my blood pressure even more, which presents a challenge.
I no longer leave the house by myself. I haven’t been able to drive since February. I have to walk with a cane, so I don’t appear to be drunk from all the stumbling around I do when I walk. I have to rely on anyone who might be willing to help me get to my doctor’s appointments and hope against hope that the offer of help isn’t just an empty promise. I lost my job cuzz I can’t work without someone in the same building, just in case I happen to fall or pass out. I don’t see any of my friends for months at a time.
And though I’ll probably never say it out loud, I’m fucking depressed as hell over this entire fucking situation. (Except for the Squishy – that’s what I’m calling the baby – THAT has me over the moon.)
I feel as if I have no one I can talk to. Whenever I go to my friends or family, I can see them tune out. I’m sure they want to be there for me or whatever, but they aren’t dealing with this shit on a daily basis. They just don’t understand and I don’t expect them to.
So, I sit in my house day after day, wondering if I’m ever going to feel better. Wondering how the fuck I’m gonna manage to take care of a baby when I can hardly keep myself from walking into the wall. Wondering if I’m ever going to receive a diagnosis cuzz I really want to know what the fuck is going on.
I’m always wondering if there’s someone else out there who might be going through the same thing. Not necessarily the same symptoms, but just the whole not knowing thing. And then I wonder if I sound like a whiny bitch when I carry on about what I’m dealing with. I don’t address this on my blog, for the most part. While I have written about it a couple of times, I try not to focus on it cuzz I don’t want to appear as whiny or like I’m seeking sympathy or something. I hate to be pitied and I’m really trying to avoid seeing anyone feeling sorry for me, ya know?
Thanks for giving me a place to rant and rave. I don’t feel like I’m gonna told be told to suck it up or some such shit, though now that I’ve said that I am TOTALLY expecting to get some comments like that.
Is there anyone else who feels like they’re taking part in The Medical Mystery Tour?
It’s pretty difficult to sleep at night when you are afraid that you won’t wake up in the morning, leaving your 18 month old motherless. And in the *capable* hands of your husband who, when it’s his night to make dinner, relies on boxed Mac and Cheese. Without me he’d probably revert back to Kraft, leaving organic Annie’s behind.
Neurologic disorders are their own beast, I think. The symptoms are literally all in your head, and yet you feel them everywhere. My feet tingle. Sometimes I can’t stand the feeling of pants on my legs because my nerves are hyper sensitive. My hands go completely numb some nights. Just a minute ago I was pretty sure that my tongue had stopped working and that maybe I was having a crazy allergic reaction. When I touch the skin of another person, sometimes it feels like it’s burning.
I’ve been to the ER too many times this last year. At first it was chest pain, which was treated with Ativan. Turns out I have chest wall inflammation. Advil was much more helpful than the anxiety drugs, but I’m a woman so must be crazy. Then I went to a doctor for what felt like the flu in the height of the swine flu outbreak. She listened to my heart, which had become tachycardic. She thought I was having a thyroid storm. Nope. Just Lyme disease. (It would have been helpful to know it was Lyme then.)
Lyme is also extra special because it causes psychiatric changes. Remember IRENE from the Real World? Don’t you wish you were my husband? I swing between uncontrollable anger to lying on the floor thinking about death. Suicide is actually the leading cause of death for people with Lyme. When I was first diagnosed and reading about the disease, I couldn’t figure out why there were links to suicide prevention lines. I get it now.
And then there’s the memory deficits. I’ve always had a really sharp memory. My mom hates me for it. Pray that your children don’t remember every phrase you ever uttered to them! I’m also a word freak and can kick some serious Scrabble ass. But now, I have trouble remembering the word for “countertop” (yep, happened the other day). I don’t know how to spell things. And I often just stop in the middle of a conversation unsure of what we were talking about or what I was saying or what I want to say next.
My stomach hurts. My knees ache. I lose my sense of taste sometimes. I can’t sleep, and yet I’m profoundly exhausted. I get night sweats. Bright lights bother me. And low lights bother me even more. I feel jittery and can’t sit still. But I’m too tired and sore to move. And I constantly feel like I’ve just gotten off a Tilt-A-Whirl, that’s how dizzy I am.
This is my life. I don’t tell you this for sympathy. I tell you it because it’s real. And frankly it scares the shit out of me.
I was bitten by a tick when I was ten. It’s the only tick bite I remember, though a large number of those with Lyme don’t remember a tick bite. There’s no way to know if this bite or another was the culprit. I do remember a rash on my hand the summer I was pregnant, and I now wonder if it was from a tick, but there is no way to know. I always had weird medical things happen as a kid though, so we have wondered if maybe it’s been dormant for many years. Your immune system has an amazing ability to keep things in check (even if you’ve been given a taste of that forbidden formula).
And your immune system is amazingly susceptible to stress, which arrived on my, well, ashy, crumbling doorstep when I was eight months pregnant.
I had Kellen and went into my six week checkup, where they did a pap, which came back abnormal (yeah, my fall pretty much sucked), and gave me a flu shot.
Four days later (and four days after returning to teaching) my face stopped working. I was home nursing Kellen (or trying) and tried to smile at him, at which point I realized I couldn’t move the right side of my mouth. Earlier in the day I had noticed that it felt like I was talking with braces on, like my lips were having to make way for an obstruction on my teeth, despite not having had braces in well over a decade. That morning I drank orange juice that tasted dull as well as had a Starbucks sandwich that made me question their place as a food establishment.
It turned out that my taste buds were not working on the right side. After I finished nursing Kellen I decided to go back to school to finish teaching. I was really scared but didn’t want to deal with it at the moment (because the only two options I could think of were a stroke and brain cancer). As I was driving down the road I lost my ability to blink my right eye. I turned around, and we went to the hospital.
The good news is that it wasn’t a stroke or brain cancer, though the way the doctor told me it was *just* Bell’s Palsy made it seem so benign as though I hadn’t just lost full functionality of one side of my face and now looked like this:
“Are you sure nothing else is wrong?” I asked the ER doc. I just couldn’t fathom that the nerves in my face would stop firing just because they felt like it. The doctor assured me that nearly all cases of Bell’s Palsy are spontaneous and have no other underlying cause than a small virus. (Had I lived in the Northeast, it is likely I would have been tested for Lyme then as Bell’s Palsy is common in Lyme and the first symptom of it moving into your brain, when things get really dicey.) They gave me anti-virals and steroids. (It was because of this I stopped breastfeeding.)
Dan and I decided to head down to San Diego. I had taken a leave of absence from work because I was overwhelmed. The stress of the fire and the rebuild was compounded by this new development, and I knew that I was spread too thin. It has always been hard for me to walk away, and while it was sad, I am proud of my ability to say, “I can’t.” We left the day after Thanksgiving, a trip that was nearly thwarted by an incredible and overwhelming sense of anxiety. I couldn’t sit down at all because I felt so antsy and uncomfortable. It was one of the only times I’ve ever had the urge to scrub a floor. It’s unknown if this was a natural progression of the Lyme or because I had been prescribed Zoloft to deal with the PTSD. It’s been posited that SSRIs may actually exacerbate Lyme symptoms in some people (many also find them helpful).
That was also the day that the dizziness set in, and it’s kept a firm hold on me for over a year. I spent the entire trip in San Diego sleeping. When I wasn’t, I was scared. I truly thought I was going to die but was afraid of going to the ER because I didn’t want them to think I was crazy. I wish I had gone while in California.
I made a deal with myself that I would make an appointment with my neurologist in January if I was still sick after Christmas. I scheduled an appointment. That week I woke up and felt fine, nearly canceling the appointment to see the doctor. At that point being dizzy was the biggest issue; it was debilitating and frightening. The symptoms came back strongly the day before I went to see the doctor It would be the first of many cycles but also the clue that led another doctor to Lyme disease nine months later.
At first I was diagnosed with Benign Positional Vertigo, which is caused by ear crystals shaking loose. The test for this is tilting your head back to see if it gets worse. It did. But the exercises didn’t work. So an MRI was ordered. While I passed the muscle tests with the neurologist and chiropractor I was seeing, I drop things a lot (more than normal), so I worried a lot about MS, especially because I was told that mid to late 20s was typical for age of onset. With every click on the MRI machine I just hoped that I didn’t have MS and if I did that the test showed it. I didn’t want to be sick, but I also wanted an answer to why I felt so badly.
I don’t think anyone knows the isolation that infertility brings with it unless they’ve lived it. Sure, we have several friends that we share all this with. Or rather, I do. I don’t know that my husband, Brian, has really told anyone what we’re going through. If you know him in real life, you know that he is silent about things that bother him. If you don’t know him, I cannot stress how quiet and private he is. But most of my friends know what we’re going through, and a few of our family members. Most people are unfailingly supportive, even if they don’t understand a bit of what’s going on.
Unfortunately, that doesn’t make it any less lonely, and doesn’t make me feel like less of a freak. Save your breath — rationally I know I’m not a freak. But that doesn’t keep me from feeling that way. And no amount of support from my very fertile friends makes it less lonely. Infertile friends — we are blessed with a few of those, too, though I wish they didn’t have to go through it either — make it even easier.
But when I’m in that exam room, having my lady bits poked and mishandled by the doctor and his ultrasound wand of pain, I am alone. When the Clomid headache sets in and I can’t even think straight, no one else is going to deal with that pain for me. When we schedule our love life, it’s just the two of us. When my cycle abruptly ends with the inevitable period, it’s just me.
That’s isolation.
That’s infertility.
But what really shocks me is the unexpected ways that infertility continually separates us from our family and friends. While it colors how I look at the world, it also colors how people look at me.
Between daycare and lessons, I come into contact with about 11 or 12 families each week. I have at least one doctor’s appointment each month and sometimes more, since I’m always having blood work and such, I need to let the affected parties know that either Brian will be here with the Munchkin Coalition, or that I’ll be late for lessons. None of them get too nosy or pry into my personal life, and all of them offer their support quietly, discreetly, and in a very sincere manner.
Except for one person. Who feels the need to tell me (again and again and again) the three stories she knows about other people suffering through IF, and how easy it was for her to get pregnant with her multiple children, and how she just can’t imagine how horrible it must be. And then, she says it…. “I am SO glad I didn’t have to do any of that! I just got pregnant so easily!” And laughs.
I’m not kidding you. She laughs at the misery of others and her amazing good fortune. One of these days I’m either going to punch her, or tell her what I’m thinking. Which is “Me, too. I’m glad you never had to go through any of this, because you couldn’t take it.” Nothing says “You’re a Freak” like that kind of statement.
My next example is a conversation I had with a family member who has expressed absolutely zero interest in our fertility situation until a recent phone call. Which, I have to say, was lovely and all that, but also really strange after two years of completely ignoring the situation.
It’s hard to catch someone up after two years of constant flux and ordeal. She then said “I wasn’t sure if you wanted to talk about it or not.” Um…yeah. I have a blog about this, ya’ll. It’s pretty much all I do talk about, it seems. Asking how it’s going makes me feel like you care, like you’re interested, like I’m not alone. The only reason I don’t talk about it 24/7/365 is because I know how that would annoy people.
So instead I wait to be asked, and feel separated from my family.
Finally, a very sweet friend recently made a comment that showed me just how much people must view me through what I’ve come to think of as The Infertility Filter. After all, it doesn’t just color how I see the world, but also how the world sees me.
We were talking about her family, and her new niece. She related an adorable story about her nephews as well. We rarely get to see them, so it was neat to catch up and think of them as little people and not as the babies we last saw. We parted ways and about 10 minutes later my phone beeped. She texted to apologize for her story, because she thought the content might have been inconsiderate and hurtful given our infertile state.
Granted, after I spent the next ten minutes really thinking about it I was able to see how someone could have taken offense or been hurt, given the actual content of the story she shared. If they were seriously sensitive and felt the world revolved around them. I, however, love to hear stories about other people’s kids — I spend 5 days a week caring for other people’s children, right?
Even though I was completely un-offended and hadn’t spared it a second thought until she texted, I appreciated her concern.
But I also had to wonder — who else is censoring what they say because I can’t get pregnant? Are we the topic of conversation when we’re not there? Are we your dinner conversation? How often are we referred to as “Brian and Andrea. They can’t get pregnant.” Or “this couple we know who can’t have a baby”.
I hate being pigeon-holed anyway, but to be ostracized by perfectly well-meaning people is kind of a bummer in and of itself. How many stories are we not hearing because someone is worried about our reaction or our feelings? Sure, it’s thoughtful. But it’s also terribly isolating.
A lot of the time, people with infertility isolate themselves. We really don’t want to make people uncomfortable or uneasy. We don’t want to be seen as abnormal, so we keep our problems hidden away. We don’t put our needs and concerns on the prayer list at church. We don’t ask friends to accompany us to the doctor for moral support (at least not after the first time you turn us down).
We don’t offer information, and we are crushed when you don’t ask. Quietly crushed. It’s so terribly easy to believe that we are all alone in our struggles, especially for couples who don’t know any other infertile couples. The longer we’re infertile, the more it builds up, and the lonelier we become.
That’s one reason I blog. Granted, I started blogging before we were “trying”, and I’ll hopefully still be blogging long after we have children, so it’s not technically an “infertility blog”. And yet it is.
I found that when we really started having trouble getting pregnant a lot of my information, ideas, inspiration, and encouragement came from the blogging world. I learned more from other infertile people than from doctors or journal articles. I want to give back to that. I want to be a source of information and encouragement to other infertiles out there who have just received a diagnosis, or just finished their fifth failed IUI, or who have discovered that Clomid doesn’t get everybody pregnant right off the bat.
So I make it a point to live our story out loud and proud. I won’t act ashamed of my infertility, and I won’t pretend it doesn’t exist to make someone else comfortable. I won’t be silent about something that affects so many people, and I won’t make anyone else feel embarrassed either by their fertility or their ability to pop out kids like it’s easier than breathing.
If you got here through a search, you are not alone. Pull up a seat, pop open a bottle of water (no booze in the infertile zone except CD 1-4), and share your stories. Ask questions.
If I can’t answer, maybe someone else can. Let’s learn from each other, and lift each other up. Need prayer? You got it. Need to gripe about how much this sucks, how cold your doctor’s hands are, or how much you really hate scheduled nookie? Go for it — we’re listening.
You are not alone, you don’t have to be isolated, and you are okay.
If we are all determined to do this right out loud, infertility does not have to separate us from them.
My first husband and I were married for ten years. Almost the entire time, I was desperate to have a child. We tried everything short of in-vitro fertilization, with no luck. Eventually, we were able to adopt, but that desire for a child that I could carry in my own womb was overwhelming.
After four years of marriage, I found out he had been cheating on me. As time went on, I came to discover he had always cheated on me, and the number of women was terrifying.
Aside from the fear of STDs, my worst fear was that in the middle of my infertility hell, he would impregnate one, if not several, of his mistresses. After all, he had done it before!
When we had been married for five years, he admitted that he had another “potential” child. He tried to claim that this child may not even be his. That son was only six months younger than his second child with his first wife – who he also tried to claim might not be his.
I tried to tell myself that these things that happened before me didn’t matter, but I could quite never shake that feeling that if he’d done it once, he would do it again.
We divorced shortly after our tenth anniversary. He married his mistress of three years. She left him when she realized he was cheating on her, too. Irony at its best. I remarried, my ex eventually gave up his rights to our daughter; she was adopted by my husband, and I gave birth to an amazing little boy.
It has been eight years since he left me for Wife #3.
His birthday was last week. I wish I could forget that date, but unfortunately, it’s a permanent fixture in my head. His sisters and his mother took him out to eat for his birthday. One of the sisters posted pictures on Facebook from the dinner.
At first, I just scrolled past them, but a sense of morbid curiosity made me go back and look through them. Few things are as satisfying as knowing that your ex is falling apart without you.
Sure enough, he looked like crap. He’s put on weight. He’s not aging gracefully. It makes me much too happy.
Among the pictures was one that made my heart stop. There was a little girl. She was about the age of my daughter. I knew she didn’t belong to either of my former sisters-in-law.
In another picture, she was standing next to him with her hand on his shoulder in a very comfortable, affectionate position. Looking at the two of them together, I was stunned to see that she looked exactly like him. Same facial structure, same chin.
He has a daughter.
A daughter that is too old to have been conceived after he left me.
Hoping that I was wrong, I sent a message to his sister asking her who the girl was. When she didn’t answer back, I knew I had my answer. She finally did answer more than 24 hours later, saying she wasn’t comfortable answering questions about her brother.
Confirmation.
If that little girl had belonged to anyone other than him, she would have just said so. Not talking about her brother was the proof I was looking for.
At first, I was furious! Enraged! Pissed!
How DARE he get some other woman pregnant when I had suffered for so many years to have a child with him!
I sent the picture to several friends and family members, to get their opinions of whether or not I was imagining things and jumping to conclusions. Everyone agreed: that’s his daughter.
And who knows how many more children he has running around in this world!
I was still shaking several hours later when I went to bed. I couldn’t sleep, thinking about confronting him. Whether I would punch him or just slap him when I saw him. After a few hours tossing and turning, I finally fell asleep.
The next morning, however, I was fine.
I realized it really didn’t matter.
I always knew there was a good chance that it would happen. I was grateful that I didn’t find out about her when I was still married to him, or I would probably be in prison for murder right now.
My daughter and I are free of him. He can’t hurt us. And the fact is, he is not worth the time and energy it takes to be angry with him. He is a scumbag, he has always been a scumbag, and he will always be a scumbag. Who cares how many illegitimate children he has? That’s his problem, not mine.
I believe in God. I believe that one day we will all have to answer for our sins. My ex-husband is going to have some pretty major sins to answer for someday.
Lyme disease is one of the hardest infections to treat.
This is her story:
I saw my neurologist today. She told me “no one wants Lyme disease.” She was referring to doctors, though it is an appropriate statement on many levels. I’ve been trying to get in to see the infectious disease doctor here. The infectious disease (ID) society is the overriding medical body who makes Lyme recommendations for diagnosis and treatment.
When I call the receptionist at the ID doc’s office (his name is Sky Blue, he he), however, she makes even getting into see him a nightmare. I have been trying to make an appointment for two months. *They* aren’t sure he treats Lyme (uh, he should). *They* told me to get a referral. I did. *They* still weren’t sure the doc could see me. *They* told me someone would call me after talking to him.
*They* didn’t. My neurologist said no doctor wants Lyme.
I can understand.
Lyme disease is so full of controversy. On one side is the IDSA (Infectious Disease Society of America- though don’t let the “America” fool you; many other countries follow their guidelines). They post that Lyme is an easily diagnosed and treated disease. They believe that even if you have late stage Lyme (which causes neurological problems and arthritis-like symptoms), it is treatable with four weeks of antibiotics.
On the other side is ILADS (International Lyme and Associated Diseases Society). They believe that Lyme is much more complex and is very difficult to diagnose and treat. They argue that many people with late stage lyme are “seronegative” (meaning their bloodwork for Lyme is negative). They also believe that the Lyme bacteria is present in several forms (spirochete, cyst, L-form). They believe in long-term, high dose antibiotic therapy (meaning a year or more). The IDSA maintains that there are no empirically sound studies showing that long-term antibiotics are more effective than a placebo. ILADS and associated organizations say that those studies haven’t studied true long-term therapy (i.e. twelve weeks instead of a year or two).
There are many patients who believe that the IDSA is in bed with the insurance companies, denying treatment for chronic Lyme beyond the 28 day criteria. I find this argument to be a bit bogus considering insurance covers things like chemo without a grand conspiracy [this isn’t to say I don’t think there are legitimate problems with our insurance system!]. But I do think the IDSA has blinders on and seems unwilling to say that it’s possible that they don’t know. I think they should encourage more studies, more science rather than telling the other side (a very vocal side) to fuck off.
I fall somewhere in the middle. I believe in science. I believe in studies. I also believe in medicine that hasn’t been proven. My dad’s life was saved because of a clinical trial for recurrent lymphoma. The medicine did NOT get FDA approval. But it cured my dad. Above the science, above the controversy, I want to get better. I am 27, and I want to live a healthy life. While it might sound nice, sitting around my house while it gets messier and messier watching old Showtime television series isn’t the way I like to spend my time. My bed and I have a relationship that is frankly a bit unhealthy (which reminds me I should probably wash my sheets a little more often). I want to write. I want to build brands. I want to engage. I don’t want to curse my computer screen because it gives me double vision. Frankly I don’t care about the ILADS/IDSA bullshit.
I just want my life back.
Which means I have to care. I have to do a lot of research. I read a lot of journal articles and scientific papers (usually zoomed in to 200% or with the font on the internet increased). I try to make informed decisions. I come up with my own hypotheses. I’m pretty sure my doctors hate me because I have more theories than they do and seem maybe slightly crazy with a hint of medical OCD. My labs at the moment are fine. I look completely healthy on paper. Except I’m not.
And no one wants me. If the doctors treat without confirmed lab tests (which were supposed to be used for surveillance not diagnosis) they risk their medical licenses (google Dr. Jones). The doctors seem afraid of this as as a diagnosis (but are free to give me migraine meds without a confirmed lab workup!). To see my doctor in Seattle I had to sign a form that I understood this was an experimental treatment protocol. That doctor continues to treat me. And I probably shouldn’t have gone on this expensive medical dead-end. But the problem is when things happen here (maybe unrelated to Lyme) I don’t have anyone to go see, which makes me a thousand times more likely to go to the ER instead of just calling my primary care doc.
I know this is confusing. I tried to explain it as best I could, and I explained things as I see it (so if you disagree, this is how I view the controversy).
If you have more questions, I can try my best to answer them.
