Traveling while chronically ill, part I

This may become a series of posts (hence the “part I”), because I can’t imagine that I will be able to post everything that needs to be said about this in one entry. Much as I would prefer to be writing about traveling with chronic illnesses in general, I feel that I need to write about myself and my own experience right now. Perhaps what I go through will be helpful to other readers.

I will be traveling solo to Seattle on Thursday for a family event. (I plan to follow up on this post when I get back, or maybe even before if I can post from my tablet, to let you all know how it goes.) I am really looking forward to it.

At the same time, preparing for it is taking a lot out of me. My anxiety level has been through the roof since last week, although a lot of it is excitement about going to a new place and seeing people I care about. I’ve been having a lot of trouble sleeping, which can really mess with the fibromyalgia.

When one has a chronic illness, even planning for a day trip can become extremely difficult. This is a 6-day trip. There are the “normal” things I have had to do, such as finding a new dress for the occasion, which was mostly fun. (My dress is fabulous, if I do say so myself.) I also got matching accessories and made matching jewelry. I may have gone a bit overboard, but again: fun. I bought a book on Seattle and have been trying to figure out what to do with the few days of spare time I will have there. Also fun.

Then comes the not fun stuff. Least fun of all is the anxiety. I’m sure I should be meditating or doing something to help myself relax, but I am completely wired, and so far I have found that medication is the only thing that helps. Not so good, but at least it’s something.

I have had to make tons of phone calls about special accommodations and arrangements. I have had to get drivers to bring me to the airport and drivers to pick me up at the airport on the other end. Since I need help with my luggage (as in, I can’t even get it out to the curb – or even lift a checked bag from the baggage claim), I’ll need to pay a little extra, since I have to get a car service and not, say, an Uber or a regular taxi. We cannot afford any of this, but I’m pretending we can.

I have also been in touch with the airline I’ll be flying with and the TSA about getting around the airports themselves. Since I cannot roll my carry-on bag, I will need assistance. I have been told that there is no way to get someone to just wheel or carry my bag for me – I need to get wheelchair assistance specifically. It does not matter that I do not need a wheelchair. Wheelchair assistance is the only way to guarantee that someone can help me get my bags to the gate.

This will be weird for me. I am not at all used to riding around in a wheelchair. As a result, it may make me feel like a bit of a phony. I will have to figure out a way to deal with that. I cannot let my pride get in the way of getting any assistance I need. (Also, I’ve been told that you get through security much more quickly when in a wheelchair. I plan to test this theory.)

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Pictures are fun, so I’m putting in this one of my handicap parking permit with purple butterfly beads to symbolize fibromyalgia awareness.

I have about a billion things I need to put in my carry-on bag. I plan to bring a checked bag as well, but all I can think of to put in it are my casual clothes and less necessary toiletries. The majority of my stuff needs to be with me at all times. In my carry-on, I will have my dressy outfits for the events, prescription medications (a gallon ziplock bag full of small bottles as well as a very small cooler for my prescription eye drops), snacks and sandwiches (because there is no guarantee that I will be able to find anything in the airport or on the airplane that meets my dietary restrictions, and it’s a 6-hour flight), my heating pad, and the toiletries I cannot live without if my checked bag gets lost. This is going to make for a very full carry-on bag. I will also have a smaller tote bag inside my rolling bag, which will contain my Kindle and various other things I will need while on the plane.

I have no idea if this will all fit into my little rolling suitcase. I will probably do a trial run later to find out. I wanted to put a jacket in there as well, since it’s been colder in Seattle than it has been here, but I know I will not have space for that so I’ll have to put it in my checked bag instead.

The family member who is making the food arrangements for this event (as well as lots of other arrangements, I’m sure!) – which includes a dinner, a service, a luncheon, a party with another dinner, and a brunch – has been very patient with me while I bug her about my dietary restrictions to find out if I will have enough to eat. I am really grateful to her for this. I can carry lightweight snacks around with me if absolutely necessary, but I cannot bring a whole meal with me because I will not be at home where I can make myself a sandwich with bread I can actually eat, and because with my neck and shoulder pain it’s already hard to carry anything extra in my handbag. Also, it is incredibly awkward to be at a gathering and have to bring your own food – or eat beforehand – because you can’t eat anything that’s being served. This is because, no matter what I say, other people feel bad for me. I do not want pity. I just want food. LOL!

I have not written much about it here yet, but gastroparesis makes my stomach very particular about what I can put into it without getting sick. Unfortunately, that means my diet is not as simple as gluten-free or soy-free or even low acid. It is very hard to explain to others what I can and cannot eat. This is in part because it doesn’t seem to make much sense a lot of the time. I can eat dairy products, which bother a lot of people with stomach ailments, with no problem. However, for example, I cannot digest raw vegetables. (I will eat most cooked vegetables even though they may set me off, because nutrients and all that.) I cannot eat wheat, but I do not maintain a gluten-free diet. I can digest small amounts of gluten, such as those found in spelt (aka farro or faro, one of the “ancient grains”). I also do not have to worry about cross-contamination because I do not have Celiac Disease. That is my diet in a very small nutshell, and I’m sure I will be posting more about it as time goes on.

Mainly, my point here is that I have a lot to think about that the average healthy person probably does not when they travel. I cannot walk long distances (and some airports are HUGE!), I cannot stand for very long, and I need to keep myself fed. I have to figure out how to keep my anxiety under control while waiting at a crowded, noisy gate. Then there are the things that are completely beyond my control. For example, I may wake up Thursday morning with a fibromyalgia flare or a migraine headache. If that happens, I will have to medicate myself and hope for the best.

All in all, travel is a huge hassle – but well worth it. I just hope things will go as smoothly as possible.

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The “big news”

I can’t believe that it’s been a month since I last posted. In my previous post, I mentioned that I have big news. Without further ado, here it is:

I have been approved for Social Security Disability.

This means that I will finally actually have some money! At first, I was completely elated by this news. I thought that having an income of some sort would make us more comfortable. This is despite the fact that I knew my payments would amount to less than half of what I made during my first job after college. (I should add that during that time, I was woefully underpaid and living in low-income housing provided by a luxury apartment building so they could get a tax break. It was nice, but it was only available because I was being paid so little!)

I will also be receiving a rather large check amounting to the payments for every month I have been unable to work since January 2012.

I am still very excited about having some money (besides my husband’s). However, I have since found out that Social Security Disability income is taxable. This means that I will lose about a third of it to the government. This makes very little sense to me due to the fact that this is money that was taken out of my paycheck as taxes to begin with! It’s kind of like taxing taxes. (In fact, isn’t that exactly what it is?!)

Well, anything is better than nothing, and this is a heck of a lot better than nothing. I just wish I had known ahead of time that the amount of money I would get would barely be enough to help with our monthly bills, instead of providing a little extra cushion of discretionary income.

I know I really should not complain about this. There are so many people who have to get by on so much less. Also, I am very relieved to be done with the process of applying, getting denied, appealing, having a hearing, etc. That was extremely stressful, and now I know the process was not for nothing. I am also very thankful to my lawyer, whose help was immeasurable.

I have been trying to figure out a way to bring in a little more income while staying within the rules for Social Security and also while continuing to try to maintain my health. I am toying with the idea of blogging for money, although I would always make sure that any advertising would not interfere with this blog’s mission or aesthetics. Any thoughts about this? I would love to hear from you.

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.

Coffee, brain fog, and making plans

Here I sit, drinking coffee. Coffee is my favorite beverage. You may have figured that out already, thanks to my avatar. (That particular picture is of a mug of delicious mochaccino that was as big as my head!) Is caffeine good for me? Is it good for anyone? Who knows? Not I.

I do know that my 1 mug of caffeinated coffee per day generally helps dispel the fibro fog.  That’s close enough to caffeine being “healthy,” in my opinion. After that first mug of the day, any coffee I drink is decaf. I can’t handle very much caffeine. In fact, if I have even decaf coffee after dinner, I will usually have trouble falling asleep.

Coffee has been the theme of my day so far. I went out for coffee with my mom today at our local bookstore cafe. I am so glad I made it out. It’s been a rough week – I’ve been having a flare since last Monday (or was it Sunday? Not sure now). I haven’t gotten out much, and I’ve missed out on some things I really wanted to do. Today, I did what I wanted to do, and my mom and I had a really nice time. Afterward, I was in terrible pain, but it was worth it.

It’s so hard to gauge what will be “worth it” and what won’t, though. There are so many factors involved. For instance, I was supposed to go to a Crafting Circle last Thursday night – something I’d been greatly looking forward to. Unfortunately, it was far enough away (20-30 minutes by car, which is usually too much driving for me) that I’d have had to get a ride, and although someone very kindly offered, it could have been a problem. Getting there would have been OK. What I was worried about was having to stick with someone else’s timing (I despise having to make people leave early on my behalf, though I probably would have done it if I’d needed to and then felt bad about it afterward), and about being in so much pain by the time I knew I had to leave that the ride back would’ve been hell.

Also, I was feeling terrible already, I hadn’t been able to knit at all for several days, and I had to be somewhat conscious for the next day’s coaching session.

I hate having so many things to consider when it comes to making plans, but it’s a necessity for me, and for so many others with chronic pain and/or illnesses. If I don’t consider these things, I may wind up feeling worse – and if I’m already feeling bad, “worse” may mean debilitating. I think I made the right decision this time, but one can never really know, which is the hardest part about it. I’m always left thinking, “What if I had gone and it had been fine?” I can only make educated guesses based on past experience.

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