Archive for the ‘life’ Category

fibro fog

March 15, 2010

One of the most annoying symptoms of fibromyalgia has been the “fibro fog” or “brain fog” that (I feel) is getting worse as time passes. Common symptoms of fibro fog include:

* short term memory loss
* difficulty remembering where you left something
* difficulty remembering plans
* difficulty with language, including trouble holding conversations, understanding conversations, and expressing thoughts
* difficulty finding the “right” word (written or spoken)
* trouble remembering simple numbers (addresses, home phone number, PINs, etc)
* difficulty following directions, instructions, and maps
* transposing or reversing letters and numbers
* trouble concentrating and focusing (particularly when it comes to multitasking)
* trouble retaining new information
* trouble recalling old information

I’m frustrated with this more than I’m frustrated by the physical symptoms, because I used to be proud of my ability to articulate and communicate, as well as my ability to multitask and utilize forethought. The written word is easier to manage, since I can spend as much time as I need to on a post, and go back to edit; however, conversations take on a whole new meaning, since I mix up words and can’t get words out, sometimes.

I can’t even imagine how annoying it must be to have a conversation with me where I’m asking you to “hand me that thing over there next to the other thing so I can do this thing with it.” I remember being irritated with my mom in the past when she’d say similar things. I can’t help but wonder if she had fibro fog while I was growing up (she often talks about aches and pains and poor sleep), but I always blamed it on her night shift work and poor communication skills. My poor mum.

Fibro fog has affected several of my favorite activities, from cooking and baking (because I lack the forethought to adapt recipes to make them my own, or create a new dish, and I often leave out or make mistakes with ingredients and steps when I try to follow a recipe to the letter), to writing (I get distracted quickly, after 200 words or so, and lose my train of thought when I try to leave myself notes and come back to the project), to crafts (I keep starting projects and forgetting them when I start something new: so far it’s been sewing and knitting I’m saddest about), to visiting new areas and trying new places (I can’t keep the places straight, and when I try to maintain a running list of “things I’d like to do,” I lose the list, even when it’s electronic). I really love playing Words With Friends on my iPhone (it’s like Scrabble), but I’m really not any good at high point words, or complex words. I figure it’s good brain exercise to play at all, and it’s fun (even when I’m getting my butt kicked), so I’ll just pretend like my brain isn’t turning to swiss cheese).

Fibro fog also affects important activities of daily living, like when it comes to remembering medication (I’ve forgotten I’ve already taken my Advair and take a second dose sometimes) and vitamins (time passes quickly, so I lose track of it), or I forget I’ve already put deodorant on and put it on a second (or third) time, or brush my teeth a second time.

Fibro fog is also why I haven’t posted much lately. I keep forgetting. Even when I have a great post idea, I’ll send myself an email or make a sticky note as a reminder, and then it gets buried under other emails or sticky notes, and then eventually I get overwhelmed and trash all the unanswered emails or sticky notes, and trash them all and start fresh. Rinse, lather, repeat.

The newest Really Annoying Habit I’ve got is that I get upset because I can’t find something that I *know* is nearby, I look all over a small area for it (like the coffee table or in the refrigerator) over and over again, and finally ask someone, exasperated, where the lost item is, only to find out it’s literally directly in front of me, next to or on top of something I distinctly remember seeing and acknowledging, but I swear that remote control was NOT THERE when I was looking furiously for it a second ago. My husband (and friend living with us) are extraordinarily patient, since they haven’t said a word about this Really Annoying Habit. Aren’t they wonderful? I’m so lucky. :)

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Still Anemic

October 27, 2009

Venofer, intravenous iron.

I had my sixth iron infusion yesterday. That brings the total of intravenous iron up to 1100 mg, in the form of iron sucrose. I’ve been eating lots of leafy greens, black beans, and walnuts (along with anything else that boasts a high iron content, like molasses). And my iron levels still haven’t come up. Well, to be fair, they’ve increased a bit, but not enough to excuse me from future iron infusions. My hematologist would like me to try four more treatments, but because my veins are shot to hell right now, we’re going to take a month off. I’ll go back on December 7 for an iron re-check and a visit with the doctor, and then we’ll come up with the next phase of the plan.

In the meantime, I have a new supplement to try (Salus Floravit) that’s vegan and packed full of iron, and hopefully won’t bother my stomach, either.

On Sunday, my brothers-in-law invited my husband and me sailing. I’d never been sailing before, so this was a real treat. We went out into San Francisco bay, under the Golden Gate Bridge, and into the ocean. It was wonderful. Perfect weather, great company, and I LOVE the ocean. I can’t get over how amazing it was. I have some great pictures and great memories!

View of the Golden Gate Bridge from below in a sailboat.

Of course, no good day goes unpunished, and I spent yesterday and today recovering. Yesterday was particularly painful and exhausting, and while today has improved, I’m still not up to speed, and my stomach (fibro-related IBS) is very unhappy. But I have amazing memories so it was well worth it!

Speaking of stomachs, I also saw my general doctor recently because I’ve been having new and different back pain, and lots of nausea and stomach pain. My back was xrayed (mild scoliosis and disc narrowing, so not a real explanation for my pain), and I had a Celiac test done (no results yet). She also suggested taking Prilosec OTC for 2 weeks straight (I’d only been taking it when my GERD was flaring), probiotics, and small frequent meals. The probiotics seem to be helping a bit, although I still get nauseous every time I eat. I so rarely throw up that I can ignore the nausea. It’s probably just fibro and motility problems. (That’s my guess. My doctor is great and is smart about not dismissing everything as fibro until other explanations are ruled out.)

So it’s a low-key week for me. I certainly miss the days of being Super Productive Girl, but on the other hand, a nap on the couch sure does sound like it could cure the world’s ills….

How are YOU?

October 12, 2009

I spend too much time on Twitter, probably, because it seems weird that I could get to know so many people in 140-character increments. But it’s turned out to be a good resource for news and networking for a lot of things, including fibromyalgia and other invisible illnesses and disabilities.

A frustration I deal with as a sick person is how to respond to the question, “How are you?” After all, it can be a loaded question to a person with a chronic illness, and for the most part the question isn’t meant to be answered with anything other than, “good, and you?” One of my favorite tweeters, @LilPecan, (who, to my knowledge, does not identify as a person with a disability) has mentioned how annoying it is to be asked the question, “How are you?” and I have to agree. It makes me giggle to hear that LilPecan and friends will greet each other with, “Good, and you?” beating the “how are you?” question to the punch.

But this does make a point. Even people who aren’t sick think this question is silly. As a sick person, I really don’t know how to answer it. When it’s asked by another chronic sickie or someone who understands what I’m going through, I’ll usually be honest (“I’m ouchy and tired, but had a great weekend, thanks for asking!”), but when it’s asked by someone who doesn’t fit either of those categories, I usually just say, “Okay. How are you?” I suppose it’s deceptive, but I really don’t think acquaintances are that interested in which body parts hurt worst on a given day, or how I just want to sleep for a week from fatigue (not depression, which is a common assumption), or how I really shouldn’t have done that extra load of laundry today.

It can also be kind of disheartening, because it’s a bit of a reminder, albeit a tiny one, that I’m always going to feel like shit, at least to some degree, and I’m never going to BE “good.” I might feel good emotionally, or I might have a good day physically, but I don’t think I’ll actually BE “good.” Or “fine.” Or “Great! Thanks for asking!”

Does anyone remember that George Carlin skit about being asked “how are you?” I can’t seem to find it anywhere, though. I’m a bad blogger.

I understand why people ask this and make small talk, but I’d still like to challenge us all to find a better way to open up discussions. Asking how I am conjures up thoughts of my health and my abilities, and while I will talk about those things if you’re genuinely interested, I’m smart enough to know that you *really* don’t want to hear the details of my boring fibro-filled life when you ask how I am. I’m okay with that. You don’t have to hear the gory details, and if I were you, I probably wouldn’t want to hear all the gory details myself. This shit ain’t fun. So perhaps you could ask me, or any chronically ill person in your life, “What’s new?” And if you’re actually interested in how we’re feeling, you could ask, “How are you feeling?”

If I do get asked “How are you?” which I do, because I have polite friends, I don’t get upset. But I do get tripped up, because I’m not sure if they’re asking to be nice, to start conversation, or because they actually want to know how I’m feeling that day. We can blame “fibro fog” for that confusion, I’m okay with that. But if you’d just be a little more specific, I sure would appreciate it, so I don’t talk your ear off when you just wanted to know if I enjoyed my breakfast. ;)

I’m back!

September 6, 2009

It’s been a long time! Almost 4 months. A lot has happened!

The biggest thing to happen is that we’ve moved 2500 miles away to the west coast. The bay area, specifically, and we love it so much! It’s gorgeous, the weather is great, and it’s an open-minded and accepting area. We really miss our bestest friends, but we have plans for vacations together… Someday when we have money. :)

The second best thing that’s related to the move is that I’ve found a great general physician who is respectful, compassionate, kind, and extremely bright. We talked frankly about fat prejudice and she saw my fat as a symptom and not a disease. In my 30+ years, she’s the first doctor to do this and the only doctor who didn’t assume I was an over-eating couch potato. Years of medical-related stress and trauma melted away. I’m still full of nerves and anxiety when it comes to going to the doctor, but things are improving.

Health-related news:

One question my GP asked was if I’d ever been tested for Cushing’s. I hadn’t. She ran a Dexamethasone suppression test, which was negative. We talked about the symptoms of Cushing’s and how it really sounded like I had something endocrine-related, so she sent me to an endocrinologist.

My white blood cells and platelets are high, and have been for a few years. Unlike previous doctors who ignored it, my new GP wanted to know why. So she sent me to a hematologist.

I’ll post about those specialist visits soon.

But I’m back! I missed blogging but it’s been busy around here. And I’ll fill you all in, I promise. :)

Friendly Skies Not So Friendly for the Fat Traveler

April 19, 2009

UPDATE: There’s a petition that’s been started on the subject here. click for link.

I’ll continue to update this as I receive responses. I’m optimistic that someday United Airlines will see the error of their ways.

I know this isn’t about fibro, exactly, but traveling is stressful (and painful) enough without worrying about fat-hatred from the airlines.

United has a new fat-hating policy on their airline:

Under the new policy, obese passengers — defined as unable to lower the arm rest and buckle a seat belt with one extension belt — will still be reaccommodated, at no extra charge, to two empty seats if there is space available.

If, however, the airplane is full, they will be bumped from the flight and may have to purchase a second ticket, at the same price as the original fare, Urbanski said.

there’s a great blog post about it here:
http://kateharding.net/2009/04/16/funited/

i wrote a short bitter note to United and got a response.

my note:

I am shocked and disgusted at your new discriminatory policy regarding
reseating or removing “obese” passengers from flights. I find this
policy to be clearly bigoted against people of size when your seats are
clearly undersized for the average size of the population. Not only is
this just an offensive policy in general, but it’s also sexist, as your
policy implies that people with larger hips will have the biggest
problem meeting your ridiculous size requirements. People with larger
hips tend to be women, so again: not only is this police sizeist, but
it’s sexist, too. your “customer commitment” website states “In the air
and on the ground, online and on the telephone, our customers have the
right to expect * to demand * respect, courtesy, fairness and honesty
from the airline they have selected for travel.” Obviously United has
decided to be anything but respectful, courteous or fair to fat people.
(At least you’re honest about what you’ll do to us, though , so I’ll
give you that.) Consequently, I’ve decided to select another airline for
travel. I travel several times per year, as do my friends and family,
and I can assure you that NONE of us will EVER choose to fly United so
long as this policy is in place, and not before you issue an apology for
your anti-fat policies.

their response:

Dear Ms. F,

I regret to learn the disappointment you have expressed in your email
regarding our new Seat Policy.

Ms. F, please know that we care about the comfort and well-being of
all of our passengers throughout their travel on United. This policy
will enable us to ensure a comfortable travel experience for everyone
onboard. This policy matches what is already in place at other U.S.
airlines.

Let me apprise you that we received almost 700 complaints in 2008 from
passengers who did not have a comfortable flight because the person next
to them infringed on their seat. This policy addresses that feedback.
This policy will also allow our front-line employees to reference a
clear policy when these situations occur.

Additionally, our higher management team in United Airlines Headquarters
that reviews our policies, is monitoring customers’ comments regularly.
I have shared your comments in a report with them for their information
and thorough internal review. Based on customer feedback such as yours,
they are able to identify areas to make necessary procedural changes,
wherever and whenever possible.

Please know that all of us at United are firmly committed to our most
important asset – you. It is always a privilege to serve you.

Regards,

Saurabh Kumar Srivastava
United Airlines Customer Relations

My response:

Thank you for your unhelpful response.

You stated that you care about the comfort and well-being of all your passengers. This is in great contradiction to what happens when you decide to enforce your new policy by singling out a fat passenger, telling her that she is too “obese” to remain in her seat, and must be reseated or, worse, must be removed from her flight, forced to buy a second ticket, and be inconvenienced not just financially, but by her forced schedule changes, as well as the cruel and undignified experience of being told she’s too fat for the flight.

You claim you have had 700 complaints last year from passengers who had the horrible misfortune of being seated next to a fat passenger. Can you tell me how many passengers flew on your airlines last year? By comparison, I suspect 700 is a ridiculously small percentage of people. I’m also curious how many complaints you receive about screaming babies and ill-behaved children on your flights. Personally, I have had plenty of flights ruined by people’s offspring, but I understand this is one of the chances one takes when flying. Just like I take the chance I could be seated next to someone with offensive body odor, a contagious illness, or loud snoring (all of which has actually happened). When will you start charging more for screaming babies, foul body odor, excess germs, or loud snoring?

Or, better yet, why don’t you tell those 700 complainers that if they don’t like taking the chance that they may be seated next to someone they don’t like, they should be the ones to be reseated, removed from their flight, or forced to buy a first class seat? Let’s assume that for the 700 people who complained about fat seatmates, you had 700 fat paying passengers. Did you receive 700 (or more) complaints that your seats are ridiculously small and uncomfortable? I suspect not, because that’s common sense when flying: overpriced undersized seats.

I’m glad to hear you’ve forwarded my complaints on to people who may actually care someday, when fat travelers all over the country stop putting up with your bigoted policies and fly friendlier airlines, or avoid the unfriendly skies altogether. I’m actually flying in about a week, on April 28th, and again on May 4th. I’m relieved to say I will NOT be flying United, and as I’ve said before, I will not ever fly United until this policy changes. The same goes for my husband, my family, friends, and anyone who asks me for travel advice.

I hope someday you realise that size prejudice is unacceptable and that fat dollars are worth just as much as thin dollars.

Sincerely,
Jennifer

their response:

Dear Ms. F,

I’m sorry you’re dissatisfied with our response.

Ms. F, we recognize we have many complicated rules and processes. We agree some are difficult to understand, and we often review our policies. So, your comments are important and helpful. While I can’t undo the circumstances you are disappointed with, I commit to you that United is dedicated to providing you the service you expect.

Your feedback – whether positive or negative – makes a difference. It lets us know what we need to consider in order to earn your future friendship and support. Please give us another opportunity to serve you better.

Regards,

Saurabh Kumar Srivastava
United Airlines Customer Relations

my response:

I will be happy to give you another opportunity to serve my family, friends, and me better when you change your policies to be less prejudiced towards large people.

In the meantime, I recommend that you look into the legal ramifications of discriminating against people based on their size, and consider taking the initiative to be a leader in your industry (at least in the United States) and look into how Canada is providing equal treatment for their larger and disabled airline customers. I have provided links below for your convenience.

http://www.michigan.gov/homeland/0,1607,7-173-23583_23678-16288–,00.html
http://www.msnbc.msn.com/id/22599803/

Sincerely,
Jennifer

EDIT: i received a response from United (i actually thought he’d given up).

Dear Ms. F,

I am sorry you continue to be disappointed with United.

Ms. F, every year United serves millions of people representing cultures all around the world. United is strongly committed to the equal and appropriate treatment of its customers. Our company philosophy does not condone acts of, and strictly prohibits, discrimination or discriminatory practices of any sort. We maintain a strong corporate commitment to a simple value to recognize, respect and support our customers and our employees. Please be assured we continually evaluate the products and services to ensure we are offering those that our customers most value. We know we can’t take your business for granted. We must earn it and we will work harder to do just that.

We appreciate your business. Your feedback will make a difference and will help us evaluate our decisions that impact your choice of airline.

Regards,

Saurabh Kumar Srivastava
United Airlines Customer Relations

my response:

I appreciate your response and continuing to discuss this very disturbing matter with me.

Since you’ve pointed out that United is strongly committed to equal and appropriate treatment of its customers and does not condone (and actually prohibits) discrimination of any sort, I hope that you are able to see your company’s admirable stance on discrimination is clearly in direct opposition to its very own policy– the policy dictating that United employees are to discriminate against customers based on their size.

Additionally, I’d like to point out that you’ve said you received 700 complaints about customers who were upset by being seated next to a fat passenger. In your response, you said you serve millions of people all over the world. I’d like to conservatively estimate that by “millions of people,” you mean 2,000,000 exactly (multiple millions). If 700 of those customers complained, that is actually less than four one-hundredths of a percent of your customer base (0.035%) were offended by having to share your obscenely small seating arrangements with a fat passenger. I’m curious to know how many customers have complained about your small seating in general (rather than specifically about fat passengers, which I am assuming was the impetus behind your new discriminatory policy). I also wonder how many fat people and fat advocates are speaking up right now about your anti-fat policy. Is that more than 700?

If United requires less than 0.05% of its customers to complain in order for a policy to be created, I can’t help but imagine United is years overdue to renovate its seating on its planes to better accommodate the United States’ average body size.

I certainly hope you forward my emails to those who are responsible for rescinding erroneous policies like the one we’re discussing. I am optimistic that United will someday understand that discrimination of all people, including fat people, is still discrimination and therefore not acceptable if the company wishes to retain customers.

Sincerely,
Jennifer

learning limits

February 12, 2009

My husband was an automotive industry casualty, as of just a couple weeks ago. Because our current location does not hold much for us, we’ve decided to pack up and move to another state where we’ll have more opportunities, better weather, and a change of scenery. So my job (with hubby’s help) has been to sort out what we no longer need and don’t want to lug across state lines. This involves a lot of freecycling and selling items on craigslist and ebay. I’d been slowly decluttering over the past several months anyway just because it’s a good thing to do, but now we’ve kicked it into high gear, and have started boxing up things we’re keeping but not using. We’re planning to leave in the next 2.5-3 months.

Yesterday we picked up some small book boxes (1ft cubes), and I boxed up about 8 of them with paperbacks, text books, some knicknacks, etc. I was lifting boxes of books and putting them on the shelves to keep them out of the way, but since everything was in close proximity (not a lot of walking with heavy objects), I thought this was the perfect job for me.

Wrong. :( As soon as I slowed down and took a break, I started stiffening up. I got help getting my TENS unit on my lower back, which helped a bit. By the time I went to bed a few hours later, my shoulders were hurting so badly that I was sick to my stomach. I used an electric heating pad for awhile, but it didn’t do much. I woke up feeling only slightly better.

And today I’m exhausted. I’m in a lot less pain now that I’ve been up for awhile, but I’m pretty much useless as far as being active goes. I’ve managed some more ebaying (anyone want to buy an audiobook?) but not much in the boxing department.

So I’ve learned an important fibro lesson today: You can overdo it without having a clue you’re overdoing it. And what is considered “overdoing it” today might not be the same as what was “overdoing it” last year or next week. It’s like a big game of fibro roullette. And while I feel like the fibro is in charge right now, I’m slowly getting the hang of it, and soon it won’t be. Because I really want my life back.

my mother

February 8, 2009

I grew up with very overprotective parents. They wouldn’t even let me ride a bike, because the feared I’d get hurt, or kidnapped, or something. They were always heavily involved in my healthcare because I’ve had asthma since I was a baby, and they were so paranoid about keeping me healthy and safe.

So when I got my “preliminary” fibro diagnosis, I told my mom on the phone (my parents live very far away), and she said “oh” or “oh yeah?” or some other noncommittal response. I thought maybe she was preoccupied or hadn’t heard me. Last night I told her I went to a rheumatologist, who confirmed that I had fibromyalgia, and she said “yeah you said that already.” No questions, no “gosh that’s too bad,” no nothing.

I’m not sure if she didn’t care, or didn’t know how to care. I would have appreciated some dialogue about fibro and what that means for me. Maybe a discussion about how it’s impacting my life compared to pre-fibro days.

This is all making me realise my parents are not the support system I expected them to be, and further confirms my opinion that family is the people who care about you, and that may not involve sharing DNA. I’m sure my mother cares about me, but she’s not very good at showing that. It’s a shame, since it’s obviously caused our relationship to suffer.

I’m interested in reading other people’s experiences when they’ve “come out” to loved ones as being a “spoonie.”

I’m so thankful for my support system as I go through this. Even if it doesn’t include my mother.