Open letter to a doctor

Dear lovely young doctor I’ve been seeing as my GP for a few months (and a total of 2 visits) now:

I like you. I would not have come back to see you for a second visit if I didn’t. I have no desire to make you feel upset or frustrated or whatever it is you’re probably feeling after the appointment we had today.

I do have to let you know a few things, though, because although I am not much older than you, I have learned plenty of things they don’t teach in medical school.

First of all, who knows the patient’s body best? THE PATIENT. If you are a doctor and you think you always know better than your patients, you’re wrong. I know I’m being very blunt, but if you don’t understand this, you’re not in the right profession. This is not a customer service, “The customer is always right” thing. These are OUR bodies. We own them. We know them. You see us for 15 minutes every once in a while and you think you know them, too. That’s just not correct, no matter how many tests we’ve had done.

Your years in medical school, medical practice, and whatever else you’ve done do not trump a 40-year lifetime of experience in this body. Like all bodies, it is very complex. Unlike many bodies, it doesn’t work right due to chronic health issues, and you are not going to be able to understand what the particulars of its experience are like in 15 minutes. You wouldn’t be able to understand it if I saw you for 15 minutes every single day. (It’s not you – no one else would, either.)

I am trying to help you understand, so please listen to me instead of telling me that I “can’t be right” when I’m telling you about things that have actually happened to me. Trying to invalidate my experience is not going to help anyone, and it’s certainly not going to keep you on my good side.

Maybe you don’t care if I like you or not. Maybe you want to toss me over to some other doctor and make me someone else’s problem. That attitude won’t help the rest of your patients, either, though. They may be less difficult than I am, but no one likes a know-it-all, especially a know-it-all who’s trying to invalidate what they’ve been through.

You don’t know it all. Please be humble and accept that. You are a doctor, not a god.

Also, the assumption that any patient will just happen to have extra time to tack on to an appointment so they can get some blood tests over in a different department is mildly infuriating. Imagine that all your patients are as busy as you are. Yes, even patients like me, who are disabled by chronic pain issues.

In fact, patients who are disabled by chronic pain issues may have an even more difficult time spending a lot of time at doctors’ offices than most. We have to budget our time very carefully. I have a lot to do on the date you suggested I do this. I have to make sure I don’t overdo it and wind up in a flare, so no, I can’t get blood work done that day before or after my appointment. I don’t know yet when I will have time to get it done, and I would prefer to make a separate appointment to do so.

I hope that when your friends try to tell you things that have happened to them, you don’t respond by saying, “You’re wrong.” And I hope that you will eventually learn to treat your patients as you would your friends, because we need all the friends we can get in the medical profession.

Sincerely,

A patient who is truly sick of all this crap!

The Pain of Realizing I’m Not Healthy Enough to Have Kids, Part 2

I wrote this article yesterday. It’s been submitted to The Mighty for publication but I really wanted to post it right away, so here it is. I hope it will help someone, somewhere. (I hope it will help me, too.)

—————————————————————————

It has been almost 2 years since I wrote an article for The Mighty about not being able to have kids due to chronic health issues. I wish I could say things have gotten easier. I thought they had for a while, but the truth was that I just hadn’t been exposed to a similar situation since then.

Last week, a very dear friend of mine gave birth to a baby girl. I was so excited and so happy for her and her partner, and I asked if I could come visit them in the hospital, and they said they would be glad to have a visitor.

I went to the store and bought some Pampers, baby wipes, and a onesie that said “Girl Power.” I bought a card and a gift bag. I looked through all the baby clothes and was blown away at how expensive they were, even at a discount store. (The price of the diapers blew me away, too.)

I went over to the hospital. I saw my friend and her guy and their sweet newborn baby. I saw the baby enjoy sleeping and eating and falling asleep while eating. (Baby really didn’t do much – newborns rarely do, in my limited experience!) The baby was beautiful and I was so happy for her young, healthy parents.

My dad with Baby Lex

I spent the next day and a half convincing myself that my husband and I could, and should, have a baby of our own. I’m in pain? I’ll deal with it. Sleep deprivation? I’ll deal with it. (Note: neither of these things are realistic.) Pooping and spitting up and all that stuff? I’ll deal. Pregnancy requiring me to go off nearly all my meds? Uhhh…scary, but I’m willing to try. No money? Lots of couples have kids on limited budgets. (Never mind that we can’t make ends meet right now and it’s just the 2 of us.) No space in our apartment? Baby can sleep in our bedroom, at least while they’re little.

I was desperate. I was ready to sacrifice everything.

I am almost 40 and can practically hear that biological clock pounding down its countdown in my ears. I have always wanted kids. I love babies in particular – I find them totally fascinating. I have seen my nieces and nephew at all ages and stages, though (the oldest is almost 15 now), and there have been amazing things about them all. I have so much love in my stupid heart, and I just want a child to give it to. I give a lot of love to my husband, but there’s plenty left over and I don’t have a place to put it!

I have lost so many of my dreams to chronic health issues. Grad school and a career are the first to come to mind, but they are far from the only ones. There are so many things I’ve had to give up since fibromyalgia struck me at age 19, and so many things that I will probably never do or have. I do not want it to rob me of this one, too.

My husband and I sat down and talked on Sunday. He tried to give me a reality check, but it didn’t work – I was in denial. Then he dropped a bomb on me: he told me that he could not handle having a child. He has several health issues and a tremendously stressful job. He picks up a lot of slack for me since I can’t do certain household chores. He doesn’t give me grief about it, but if he had to make diaper runs too, it would just be too much.

I spent the rest of Sunday and all day Monday crying. The only thing that stopped me from crying away the day on Tuesday was having to take Fioricet for a headache, which dulled the emotional pain as well – so much so that I had a therapy session and talked about this and didn’t cry and even felt oddly detached.

Today, I am putting one foot in front of the other. I’ve put dinner in the slow cooker, watched the ANTM finale, done some knitting, put away some laundry. My heart still aches like crazy, though. I want to end this cycle of grief I seem to go through every time I spend time with a baby. I am thinking about doing some volunteer work with kids (not babies, though – that would hurt too much and defeat the purpose). If we are ever able to move to a bigger place, we might like to become foster parents.

I suppose my point in writing this is to let anyone else in the same boat know they are not alone. Maybe we can work through our grief together. There must be some way to get through this without feeling a deep sense of regret for the rest of our lives. I haven’t found it yet, but I will keep searching and trying new ways of dealing with it.

In the meantime, I am determined to continue visiting my friend and her baby when I can. I may hurt afterward, but I don’t want to regret not spending more time with them, provided that they want me to be there.

Doctor issues – can you relate?

The following is some recent correspondence between me and my Primary Care Provider. (It pretty much explains why I haven’t bothered having a PCP for a while, but I digress.) The second note from me to him started getting long, and I finally realized I didn’t want to send most of it but wanted to post it here.

Below, you’ll find my first recent note to him, the note I received back (pay attention to the dates), and the note I sent back to him plus the part I didn’t send. As always, comments welcome!

From: Lex
To: PCP
Subject: Severe eye issues – please help
Sent: 10/6/2016 5:00:28 PM GMT

Hi [PCP] – I have now been diagnosed with ocular rosacea as well as dry eye, blepharitis, and eye allergy issues. My eyes have gotten much more irritated lately, but I cannot reach my ophthalmologist about treatment options for the ocular rosacea. My eyes are in significant pain and I have had to cancel weekend travel plans because I am too uncomfortable to do much of anything that requires being able to see.

I am currently on Restasis 4x/day and Prolensa once a day, but I would really like to start on low-dose antibiotics, which have been reported to be helpful in every article I’ve read about ocular rosacea. Would you be willing to prescribe some for me, if they won’t interact with my other meds? This article gives some more info: http://emedicine.medscape.com/article/1197341-treatment

Also, the Mayo Clinic website says: “Your doctor may prescribe temporary use of oral antibiotics, such as tetracycline, doxycycline, erythromycin and minocycline. For severe disease, you may need to take an antibiotic for a longer time.”

Please call me about this at [my phone number] and leave a detailed message if I do not answer. If you are willing to prescribe antibiotics, they would need to be sent to [pharmacy I use].

Hope to hear from you soon. Again, please call instead of sending a message back, since I cannot look at the computer screen much.

Thanks,
Lex

——-

From: PCP
Sent: Sun 10/9/2016 5:27:10 PM GMT
To: Lex
Subject: RE: Severe eye issues – please help

so who diagnosed ocular rosacea- and if it was the eye doc or dermatologist why wouldnt they watnt to prescribe the antbiotics accordingly, that said we alos need to recognized that you have GI issues and long term antibiotics may worsen this
we should probably meet to discuss more
i can call you next week, its been extremely busy

——-

Re: RE: Severe eye issues – please help – Message
From: Lex
To: PCP
Sent: Sun 10/9/2016 6:38:51 PM GMT
Sorry, this was a very urgent problem and after spending all week trying to reach doctors to get the prescription that is considered the standard treatment for ocular rosacea (which was diagnosed by [Dr. Reputable Fancypants]), I finally saw an ophthalmologist on Friday ([Dr. Nearby]) who not only was willing to give me the prescription but was shocked that no one else would. He confirmed the ocular rosacea diagnosis and ran some tests. He also gave me punctal plugs for dry eye.

The GI issues are a concern, of course, but right now I am on a low dose of doxycycline – 50 mg 2x/day. Honestly, if my eyes remain as irritated as they have been, it has far more of an impact on my life than my stomach issues do. I am already so severely limited in what I can do by the fibromyalgia that I cannot keep going without being able to use my eyes. I can’t use the computer for more than a few minutes a day, read a book or magazine, watch TV, etc. I have been wearing 2 pairs of sunglasses INDOORS for months now. I have been unable to do much other than listen to audiobooks, talk on the phone, and anything else that doesn’t require being able to see. Things got ridiculous and I am glad to have gotten the treatment I needed. The punctal plugs already help somewhat, and the antibiotics will take a while to kick in.

HERE’S THE PART I DIDN’T SEND:

Since this problem started (in April or May?), I have seen no fewer than 4 ophthalmologists. The first and second did not diagnose the problem properly and gave me only steroid eye drops and allergy eye drops as treatment – both of which worsened the problem. I was also given Restasis, but in cases of ocular rosacea, that doesn’t help much because the oil glands are blocked so the tears produced by the eye just evaporate. The third ophthalmologist (aka Dr. Reputable Fancypants) decided he wanted to try something completely unconventional that no one understood why he would want to try (friends, other doctors, etc.), and would not give me the standard treatment because he was too interested in using me as an experiment.

I tried to call or send messages to every single doctor I could think of about this, and finally went to Urgent Care on Thursday, where they would not do anything for the problem. Thank goodness I managed to get an appointment with [Dr. Nearby] for Friday. It should not take this kind of effort for a patient to get the standard treatment for a diagnosis, especially when that treatment is a low dose of antibiotics as opposed to narcotic painkillers or something like that.

(I know you’re busy, but feel free to Google “ocular rosacea” if you have time and you will see what I mean.)

I am sorry to unload on you like this, but quite honestly, I am furious – not at you, but at this whole dysfunctional medical system where so many doctors would prefer to keep a patient in pain rather than give them the medication that they obviously need. This is not my first rodeo – or even my second – and I am tired of having to do my own research in order to find out what I need, check for drug interactions myself, and then get treated like someone who doesn’t know what she’s talking about (or worse, someone who can’t be helped).

---

And that’s where I stopped. There is a lot more to this situation than what I’ve written here, but this is what you’ll get for now because – surprise! – my eyes hurt.

OUCH.

Oh hello, fibromyalgia flare. Just in time for an appointment with a new rheumatologist. In some ways, it’s better to see a doctor while having a flare, so the doctor can be a bit more informed about what this is like for me. Unfortunately, it makes actually getting to the doctor’s office, sitting in the waiting room, and communicating with the doctor (and nurse and anyone else) very difficult.

If this were an appointment with any other doctor, and if I had any time coming up to reschedule this for, I would definitely reschedule. This is too important, though.

Wish me luck!

Par-tay!

Today, I am going to a party at a friend’s house. I am looking forward to it! Some of our mutual friends will be there, too, and it should be a really good time.

As my Fibromyalgia Coach would say, this party is “flare-worthy.” I’ve taken some precautions to try not to end up with a flare, though, and other precautions in case I do have one.

First precaution: making sure I had plenty of time to rest yesterday, and plenty of time to rest tomorrow. I have nothing on the schedule for tomorrow except a grocery delivery that will be coming sometime in the late afternoon. As for yesterday, I had an appointment with my psychotherapist in the early afternoon and had to bake a dish to bring to the party later in the afternoon, but I did manage to get some rest and relax with my husband later.

I also didn’t take a shower like I was planning to – I don’t smell bad or anything, but I’d really wanted to wash my hair so it would look good today. Showers are difficult, though. Some people experience relief from a hot shower. (I used to, way back before I had fibro.) These days, showers can sometimes feel good, and sometimes make me feel a hundred times worse. It’s impossible to know beforehand. Since I was already low on energy yesterday by the time I would have showered, I opted not to. It’s more important to feel good for this party than to look good.

My eyes are still bothering me a lot, so I’ll be bringing eye drops with me and will try to get myself to actually use them. I’ll also be bringing my big sunglasses, my normal sunglasses, and my regular glasses. (Not sure which combination thereof I’ll be wearing to drive over there!) It’s a sunny day, and even if it weren’t, I would probably still need the sunglasses.

Also, I’ll be bringing pain meds (just in case), and saline spray for my nose, which is still not doing well (I’ll spare you the gory details for now and just say I’m still recovering from that massive nosebleed and my fall allergies are in full force). Maybe I should also bring an extra pocket pack of tissues (I know my friend has tissues at her house, but I don’t know if I’ll be near them when I need them).

I’ll have to do my daily stretches ahead of time (nothing strenuous). Not sure what other preparations need to be made…I feel like I must be forgetting something, but then, I always feel that way!

What do you find that you have to do in order to prepare for things like this? I’ve been getting a lot of experience in this sort of thing over the past few months, but there’s still plenty to learn!

It is now time to go finish preparing everything (including myself) and then…party time!

Fibromyalgia is stupid.

I know, that’s a deep thought there in the subject line. In all seriousness, though, that is how I feel. There is very little rhyme or reason to my fibro, as far as I can tell. Some people talk about patterns with their pain. For me, there are very few patterns.

Here are some things I know are usually likely to make me hurt:

• Extremes in temperature
• Eating too much sugar or staying up too late, or both (I have a tendency to do both!)
• Standing for too long (sometimes “too long” is only a few minutes; other times, it’s much longer than that)
• Sitting in an uncomfortable chair
• Staying in bed for too long
• Spending too much time at the computer

Other than that, it’s anyone’s guess. I can sometimes be fairly active without consequence. Other times, the smallest activity will result in severe pain. Then there are the times when all I have to do is move a certain way, and I will suddenly wind up in tremendous pain. There isn’t anything that is guaranteed to trigger a flare, and there isn’t anything that is guaranteed not to trigger a flare.

If you have fibromyalgia or chronic pain, what triggers your flares? Do you know, or do they work in mysterious ways like mine?

I know humidity is a common trigger, but for me, it’s a wild card. Snow, on the other hand, will almost always send me into a flare. Winters are also very difficult for me because my digestion slows down in the colder weather, causing stomach pain and nausea.

Which do you find is more difficult for you personally, heat or cold? I know that varies from person to person.

A lot of doctors now think fibromyalgia is caused by nerve pain. I have never believed that in my own case. To me, it has always felt like it is in the muscles. Medication for nerve pain has not helped me. (I am currently taking Neurontin, but only because it has a sedative effect that seems to help me sleep. Lyrica did nothing for me except cause me to put on about 40 pounds in the space of just a few months – not helpful, to say the least!)

I recently happened upon a theory that fibromyalgia is caused by problems in the fascia. This makes much more sense to me.

What do you think? Nerve pain? Fascia? Something else (or a combination of factors)? I’d love to hear from you.

Blepharitis. Ugh.

The ENT says my nose is healing up nicely – thank goodness! My nose and throat still feel pretty rough, and I’ve been coughing quite a bit, but I did start out with a throat infection. (I neglected to mention that in my last post – I got sick my last day in Seattle and lost my voice, which made for a weird traveling experience – hope to post more about traveling to and from Seattle soon, before I forget everything I want to post about it!) I’ve got 2 days left on my antibiotic, and I follow up again with the ENT next week for the throat thing.

Life has been full of doctor’s appointments lately. That’s not out of the ordinary, unfortunately. At least it means I’m taking care of myself, though, and I’m glad that this week I’m not too sick to go to them! (That happens fairly often – not being able to go to the doctor because I’m feeling too bad to get myself dressed and over to the doc’s office. It’s very frustrating.)

Although I’ve been pursuing ways to make progress with the fibromyalgia, it’s been sort of on the back burner lately. That is partly because of my nose and throat, and partly because of my eyes. I am still having a lot of trouble with my eyes. (I am sitting here typing this in my huge dark sunglasses that fit over my glasses – sexy!) I am taking a risk right now by spending too much time at the computer. When I’m done posting this, I’ll go do something that doesn’t require looking at a screen.

I’m too sexy for my sunglasses

The problem still seems to be blepharitis and allergies. We’ve tried a bunch of different steroid treatments, including a special preservative-free one that had to be made at a compounding pharmacy. No luck. I’m on Restasis four times a day now, and that seems to help some. I also use a warm compress on my eyes for a few minutes once or twice a day, and wash the eye area thoroughly. I’ve been doing my research on blepharitis and things that might help. I visited the eye doctor again yesterday, and this time I came armed with a list of questions (“Do you think this would help? How about this?”). We are NOT trying any more steroid treatments or allergy eye drops, because they just haven’t worked.

The most likely cause of my blepharitis is seborrheic dermatitis (yes, I know that’s a mouthful). Seborrheic dermatitis is what ordinarily causes dandruff…but I have it on my face. (Lucky me!) I first got it 2 summers ago. I was stunned when my usually oily skin became dry and cracked and itchy and started flaking. I went to the dermatologist, who gave me prescription strength hydrocortisone and said to use it on my face twice a day until my skin stopped bothering me, and then go off it for a while, and then go back on it if my skin started getting bad again. I had managed to get down to once a day, but every time I went off it completely – even for a day – I had disastrous results.

I’m now back on it twice a day, because I’m hoping it will help my eyes. The skin around my eyes gets extremely dry and flaky, and of course I can’t put the hydrocortisone that close to my eyes, but I can at least rub it into my eyebrows and forehead so flakes don’t fall into my eyes from there. As of this morning, I’ve also started using dandruff shampoo on my eyebrows (don’t laugh). Might help – who knows?! I already use Head & Shoulders, not because I have dandruff on my scalp (I have a little, but not enough to merit using dandruff shampoo) but because it could benefit my face. (But no, I don’t wash my face with it. Just my eyebrows. OK, fine, laugh if you want. I think it’s kind of funny.)

I’ve also started taking flaxseed oil supplements, massaging my eyelids after using the warm compress but before washing (that’s supposed to help get the oils that are “stuck” out of there), and using Ocusoft wipes to cleanse my eye area instead of diluted baby shampoo. I’ve ordered a “real” warm compress for my eyes, as opposed to the wet washcloths I’ve been using, since the moisture from the washcloths dries out the skin around my eyes, which may make the blepharitis worse and definitely causes some discomfort.

Have I covered all the bases? Anyone know of anything else that might help?

The eye issues have been going on for several months now. Hot weather seems to make them worse. So does blowing air from A/Cs, fans, etc. It’s been a very hot summer here. I’m hoping the cooler weather that should be on its way will bring some relief.

I’d love to hear from any of you who have had similar problems with the eyes or skin, even if it’s just to say, “Hey, I understand what you’re going through!” Please leave a comment!

Musical interlude

I thought I’d post the actual song I quoted yesterday – KT Tunstall’s “Hold On” – because it’s just such a cool song. Yes, I’m posting a You Tube video, but only because I don’t know how I could post just the audio (I’m not big on most music videos, unless they’re live acoustic or really creative or something). This “video” is really just the album cover with the song playing.

Also, I feel that I must add another song lyric of gratitude here:

Life is too short, so love the one you got
‘Cause you might get run over or you might get shot
-Sublime

I know, it’s kind of a silly one, but it’s true. And on that note, I’m going to go eat some breakfast.

Oh, but first, in case you are wondering why I post song lyrics so often: I love music. It’s always been one of the things that helps me get by. I used to make music – I’ve played piano, trumpet, and guitar, and I’ve done a lot of singing. Now I mostly listen (and sing, but not in public), but music is something that can really inspire me and I hope that maybe this adds something to your day, too.

Please always feel free to share your musical inspiration in the comments! I’m always excited to get to hear music that’s new to me, or listen to old favorites.

The cheesiest post you will ever read here (probably)

Hold on to what you’ve been given lately
Hold on to what you know you’ve got
Hold on to what you’ve been given lately
Hold on ’cause the world will turn if you’re ready or not

– KT Tunstall

I have loads of stuff I want to post about, but that’s all getting moved to the back burner for now, even the half-finished posts I wrote while I was away.

At the moment, I am just full of gratitude. It isn’t that I’m not normally grateful for what I have, but sometimes it takes some pretty important events to drive it all home, especially when you’ve got depression and/or chronic physical illnesses.

In this case, there are two factors. One is the fantastic time I had in Seattle with relatives I hadn’t seen in a long time – definitely too long. I had been a little worried about going out there on my own, and about how I’d be received after such a long time, but I really need not have worried. They were as welcoming and loving as ever. They treated me with so much warmth, kindness, and generosity. Their hospitality was amazing. I kind of feel like I’m generalizing by saying “their” – a whole lot of my relatives were there for this event – but really, it’s true of every one of them, and I love them so much.

(I also met a longtime online friend, which was great, and enjoyed Seattle immensely. More about all of this later, I hope.)

The other factor is this: last night, I had a nosebleed. That makes it sound so simple, but actually, it was not at all. I apologize for the nasty details that come next.

Last night (or maybe very early this morning), blood started gushing from my nose and mouth, and I vomited a few times. Our bathroom looked like a crime scene straight out of CSI. (I’m glad I was in the bathroom when this began, at least!) My husband had to call 911 and get an ambulance to take me to the ER. I have never been so frightened in my life. I thought I might be dying. I had never seen so much blood. I hadn’t even had a “normal” nosebleed since I was a kid, and I had never coughed up blood before.

We were in the ER for several hours last night/this morning. My husband was by my side the entire time. I received good treatment there. They wound up suctioning out a lot of the blood and packing my nose with this weird inflatable thing. It hurt like crazy going in, and didn’t stop the bleeding, though it certainly slowed it down.

When we came home, I managed to sleep for a while even with the packing in my nose (which is no small feat – I am not so good at breathing through my mouth). My husband got me an ENT appointment for this afternoon and took me over there, and again, was by my side the whole time (except while he was parking the car).  😉  The ENT cauterized the place where he thought the bleeding had started, and, lo and behold, my nose has not been bleeding since.

Going through this made me feel exceedingly grateful – for my husband, for my loved ones, for good medical care and good medical insurance, for being able to breathe. I wanted to take the time to share that gratitude, because sometimes it gets hidden by having chronic illnesses, but it’s still there. It’s always there (at some times more than others, but yes, always).

Any of you have similar experiences you’d like to share?

Pike Place Market selfie