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!

Advertisements

Blepharitis. Ugh.

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.

sunglasses-pic-for-blog
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!

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?

img_20160904_150636141_hdr
Pike Place Market selfie

 

 

Health ramblings

“On paper, you’re the picture of perfect health.” Those words were said to me yesterday by my new Primary Care Physician as he was looking at the results of last year’s physical. (OK, so they weren’t really “on paper,” they were on his computer…but we know what he meant.) I am such a case of “you don’t look sick” that even my test results are conspiring to make me less believable.

I’m kidding. I’m actually really glad my lab results are generally normal. I have fibro, I have reflux esophagitis, I don’t exercise or eat right. Things could easily go sideways at any time. As of last year, my cholesterol was at the high end of what’s normal, and my good cholesterol was, well, good. It didn’t worry the doctors. I hope this year’s physical will be similar. (I’m due for one in September.)

I have hope for this new Primary Care doc. He doesn’t seem daunted by my impressive list of medications and conditions. He is willing to work with me as long as it doesn’t involve making medical decisions that should be made by specialists, which is perfectly reasonable. He listened to what I had to say yesterday, and when he spoke, he asked questions and said things that made sense. He was friendly and kind, and was even wearing a lavender shirt and a white tie with purple and lavender stripes (purple is my favorite color, so this made me happy).

He wants me to try to work with my other doctors to cut down on my meds, which I hope I can do. There are a few I’m taking that I’m not sure are helping, so decreasing the dosages with the help of whatever specialist prescribed them is a good idea.

He’s ordered a bone density test and a gastric emptying study for me. (I won’t go into why bone density is a worry for me at 37 years old, but it is.) My last gastric emptying study – the one that determined I had idiopathic gastroparesis – was 9 years ago, so we want to see how my digestion is doing these days. I had been on Reglan (a motility aid that helped considerably with my gastroparesis) for years, until a doctor took me off it last year due to the risk of tardive dyskinesia. (Scary stuff!) I did not get noticeably worse when I went off it, so that was that.

I told him about the work I’m doing to try to get better – the weekly psychotherapy sessions, weekly Fibromyalgia Life Coach sessions, trying to develop more of a social life because it makes me happier. That’s all been working out well for me, though I hit bumps in the road when life interferes (throwing horrible eye allergies at me, or giving me a mystery illness with a slight fever like I have now, or what have you). (Side note: the eyes have been much better lately! Hooray!)

Here’s the killer, though: he wants me to try making drastic dietary changes. Ummm…drastic? Yikes! I love food. My diet is already restricted significantly because I cannot eat wheat or soy or raw vegetables without getting really sick. I will give up coffee and chocolate over my dead body. Same with dairy products, though I can try to decrease them somewhat, I think – if I can think of other things to eat!

The main thing he suggested to me was an anti-inflammatory diet. However, in my Internet research, it’s become apparent that a lot of sites (and doctors) disagree on what that means. To that end, I’ve reserved a few books from the library on what one should or should not eat with chronic pain, all of which have recipes included. I figure I’ll cherry pick what I can from those.

I’m of the opinion that drastic dietary changes would be a bad idea for me unless I were absolutely desperate to try something new. Food brings me joy. When I don’t eat food I like, and/or when I don’t eat enough, I feel deprived – something I tend to think that I feel often enough as a fibro patient. I don’t want more deprivation.

However, I’ve known for a while that I need to cut down on sugar. A lot. I have a terrible sweet tooth, and although my sweet-eating is limited to what doesn’t contain wheat or soy, that still leaves a lot of delicious things. (Gluten-free baked goods from my favorite farmer’s market vendor…Ice cream…Fancy chocolate. Mmmm.) Cutting out sugar completely would make me a totally miserable human being, but cutting down on it would probably decrease my pain levels. I am sensitive enough to sugar that I can actually feel my pain get worse after eating something particularly sugar-laden. Not a good feeling (except for my taste buds!).

That’s all I’ve got to say about the Primary Care Physician visit for now.

On another note, Fibro Coach suggested I try melatonin for sleep. For a very long time, I’ve been on Trazodone as a sleep aid, and lately my sleep hasn’t been great even with that. I tried the melatonin. It worked too well! I found myself sleeping straight through the night for 10-12 hours. That would be fine if I had nothing to do, but I do actually need to get out and do things sometimes, so I’ve cut it down to half a pill. I’ve also tried reducing the Trazodone (with a doctor’s help). Not sure how that will work out. Wish me luck!

 

I have big news that must wait until another post. Please stay tuned.

I have many blog posts in my head that want to be written, but lately I have been having a lot of trouble with my eyes and so I cannot look at the screen for very long. (That was my aforementioned “good excuse” for not posting – there’s a heck of a lot more to the story than that, but this is what you’re getting for now).

Today I am feeling frustrated. I went to a music festival on Saturday, which was absolutely amazing and which I really want to post about, but I’ll have to wait until another time for that. I gave myself Sunday and Monday to recuperate, and last night I went to a Crafting Circle at a friend’s house.

Of course, my body has thrown a few wrenches into my plans, as it likes to do. This time, it’s not the fibro – or at least, not really. The fibro has taken a backseat for now. My eyes, which are extremely irritated due to allergies and blepharitis, are going crazy even though I am doing exactly what the doctor said (warm compresses, washing carefully around my eyes) and using prescription eye drops and preservative-free lubricant eye drops. As I type this, I am sitting in my apartment with no lights on. The blinds are partly open, but it’s not very bright in here. I am wearing sunglasses. Really.

I hope this isn’t my new normal. I had to cancel with the cleaning lady for today because I just need to rest. I don’t want to rest, but my eyes won’t let me do much that involves keeping them open.

That said, some days are much worse than others. My eyes were mostly OK over the weekend, but yesterday was terrible, and I was even considering not going to the Crafting Circle because of it, but I was mostly all right until right before I left. The drive home at night was very hard. I had to be really careful, since the street lights really bothered my eyes and I couldn’t very well put my sunglasses on to drive home at night. Luckily, my friend’s house is only about a 10-minute drive away.

On top of this, I seem to have sciatica. That took me completely by surprise. I got up from the couch on Sunday night, and all of a sudden my butt hurt so much on the left side that I could barely walk. My husband thought it probably had to do with the sciatic nerve, and when I looked it up, I knew he was right – the pain was in the exact places where the nerve is. So how the heck did I end up with this?! I don’t know. It’s not nearly bad enough for me to see a doctor about – the pain has eased off a lot since Sunday night – but I don’t know what I should or should not be doing about it, if anything. I am praying it will just go away on its own because I do not want to deal with yet more doctors and the possibility of physical therapy.

I’m kind of feeling like I can’t catch a break right now…but on the other hand, I’ve been doing a lot of fun things. I went to a 4th of July BBQ at a friend’s that was really great. Good food, excellent company. I’ve been helping my mom with something kind of exciting (I won’t mention what, out of respect for her privacy). I went to the music festival on Saturday and the Crafting Circle last night.

Life is really good right now…but today sucks. I’m not sure how to make it better, since I can’t do much without bothering my eyes and I don’t want to get back into bed. Yesterday I spent most of the day listening to music and chilling out, but as much as I enjoy listening to music, just sitting around while I do it is not really my style.

This makes me wonder what blind people do to keep themselves occupied. Of course, they’re much more used to this than I am, at least if they’ve been blind for a while. Anyway, I’m totally open to suggestions for what I can do today! Please respond if you can think of anything.

Thanks for reading!

Still the hardest thing of all…

My 15-year college reunion was a little over a month ago. Many of the people from my graduating class had their families – including small children – in tow. I’d been worried about that beforehand because I’d known it would happen, and I’d worried about my own emotional reaction; but instead, I found that I was OK. I was on a bit of a “kiddo overdose” – they made so much noise! Since a bunch of us were staying in the dorms (which I’d done for our 5-year and 10-year reunions and now will never do again, but that’s another story), I got the benefit of lots of kid noises. I’m pretty sensitive to noise, so I was rather happy the children weren’t mine, even being cute as they were.

Then I stayed for a few nights at a friend’s house and met her beautiful (and smart!) 15-month-old girl. I love the kid, but just seeing the struggle my friend went through to get her daughter to stand still while she cut her nails was enough to scare me into thinking, “I can’t do that.”

Also, all parents of small children seem to look sleep deprived. I feel sleep deprived all the time, despite the fact that I tend to get a lot of sleep, so I can’t quite imagine what I’d be like on very little sleep.

A few weeks ago, a close friend came to visit with her adorable baby girl. This kid was mostly calm and quiet, taking everything in, clearly intelligent and curious. I still didn’t feel bad after their visit. I was just happy for them and their family.

I’ve been going out of my way to see my friends with small children, because small children grow and I want to see them while they’re still little. (And also, I want to see my friends, of course!)

So I’ve been going along, since the Reunion, thinking things were fine. Thinking we didn’t need a baby, that we couldn’t take care of one and we’d be better off trying to take care of ourselves, which is hard enough. I thought I was a little closer to the acceptance of my situation that I crave so badly.

And then…setback. This morning, while unable to sleep, I started reading a book by one of my favorite authors, Jennifer Weiner. (I know, it’s chick lit, but it’s intelligent and funny and just good.) Unfortunately for me, this book is about a woman with a husband and a daughter and a career and a house in the suburbs. Sure, the daughter’s difficult. Sure, the marriage isn’t working so well. Sure, the mom’s got an addiction to painkillers. But somehow, when I stopped reading for the time being, I couldn’t help but cry.

A baby is not in our future. A house is not in our future (and neither, it seems, is a bigger apartment than our current 1-bedroom). A career? Ha. Not for a while, anyway, though I’d never say never.

It’s hard not to dwell on the things my friends, and people who are not my friends, have that I likely never will. I can try to console myself by thinking that I am doing my best to take care of myself, with the goal of eventually getting some better; that I am trying to get Disability, which may eventually give us a little more money so that maybe we can pay our bills without dipping into savings every month; that kids are noisy and dirty and don’t let you sleep.

I know we’re lucky. I know my husband is amazing. We have a nice place to live, albeit a small one with no room for kids and an underwater mortgage. We’re not homeless or starving. We don’t have life-threatening illnesses. We have lots of blessings and love in our lives.

I still want a child. Every fiber of my being wants a child. I want to be like my friends who don’t want children and who have never wanted children and will likely never have them. I want to want that freedom. I just don’t. (Besides, the things people say you can do when you don’t have kids – such as take vacations – are inaccessible to us, anyway.)

Sorry to be such a downer. I have to get through this somehow, and writing it out helps.

I apologize for not having written much lately – I have a good excuse, one that I’d like to post about eventually, but for now this is all I can type.

Why I Write

Why start this blog? Well, back in April, I wrote an article for The Mighty. It touched a lot of people. Since then, I’ve had endless ideas for articles to write…and I’ve also had writer’s block. That article is a tough act to follow!

I’ve decided to start a blog instead, so that maybe I will feel a little less pressured to tell the “right” story all the time. I am doing this in part for myself, as an outlet. I am also doing it with the hope that those who have chronic conditions might be able to relate or at least feel less alone, and the hope that maybe those without chronic conditions can understand those of us who have them a little better.

I am trying to go through a bit of a transformation these days. Not long after I wrote the above-mentioned article, I found myself awake at 3 AM in the midst of a fibromyalgia flare. I felt so bad that suddenly, something inside me snapped. I needed to get better. I had spent such a long time without much hope for improvement in my fibro – drugs didn’t work, I couldn’t exercise, even knitting (my favorite hobby!) was difficult. The pain was ridiculous, and I was fed up.

I did some searching. I can’t even remember where I started out (presumably on Google), but I wound up eventually finding some books that seemed like they might be useful. I also found out about fibromyalgia coaches, and a few days later, I got in touch with one. She and I had a long initial consultation, and she seemed to have a lot of helpful information to offer. I’ve had 2 sessions with her since then, and we are taking baby steps but I know her approach is helping.

I finally have some hope back that maybe I can improve my life. I am goi0520161657ng to try to hold onto that hope at all costs.

 

Tell your story, tell it, tell it
Tell your story to anyone who’ll listen
Tell your story, don’t stop talking
Just tell your story walking
-Deb Talan