Hematology

September 8, 2009

I was going to start chronologically when it came to updates but I think I’m going to start with the most recent and then work back logically from there. I’m starting with the most recent because it’s the most painful and biggest obstacle right now.

For several years, I have had a high white blood cell count and a high platelet count. Every doctor has dismissed it as not relevant or useful or meaningful. My current GP sees it for what it is, a symptom of something, and sent me off to a hematologist. My great GP reminded me that she did not think I had anything serious or life threatening but did give me a heads up that she was sending me to a cancer center. I appreciated the warning although I admit my blood pressure was STILL through the roof when I got there.

So I was tested for various autoimmune diseases and simple anemia, as well as leukemia. Eveything was negative. I was tested for a proliferation disorder (where bone marrow just makes too many of certain cells), also negative. So the next test needed was a bone marrow biopsy.

This is sound logic and I appreciate that simpler blood tests were run first. However, I have a disease that makes me hypersensitive to pain and prevents me from recovering from trauma and stress in a timely manner. I expressed my concerns and, to be honest, I don’t think these people have ever worked with a fibro or cfs patient before. The assured me that lidocaine would be sufficient and absolutely would not sedate me, despite having read that sedation is not uncommon these days. The nurse practicioner was understanding and offered me morphine by mouth beforehand, because that was the best she could do.

So I went in for this procedure on September 3. I will spare you the details because they are upsetting but the gist of it is this: the pain was as close to unbearable as I ever want to get. I felt everything they did. I was in tears and I suspect I screamed. And on top of it sycking in general, it took 3 tries to get the bone sample out of my pelvis.

In hindsight, there wasn’t a lot of sympathic gestures. There wasn’t even a wheelchair offered to get us to the valet parking (walking was so very painful, and still is). They did not know I was allergic to latex until I got my husband to ask about the bandage they were putting on after. They were quick to offer benadryl. Pls dont sue us. They did bring orange juice when they found out I hadn’t yet eaten and the pain was making me sick to my stomach.

I think they were surprised at how I responded. I know I was. You know how you get all stressed about certain things and they turn out fine? Yeah… This was the worst experience i’ve ever had. And I didn’t think it’d be all that bad and believed most of my stress was fear of the unknown.

Since that day, I’ve been mostly in bed. I’ve taken a lot of naps and sat on the (uncomfortable and temporary) couch a little. I’ve been regularly taking vicodin that I use for my back. And that barely touches the pain.

Today is the first day I feel I can say “the pain has decreased,” but that puts it at an 8 out of 10 when it was 10 (or 100, it doesn’t matter) before. However, I’m still so tired. Like coping with pain is exhausting. And if only I could sleep enough, maybe it will stop hurting.

I’ve been useless at home, which is guilt-inducing. I also keep having hospital flashbacks (which are not uncommon for me but it’s never this severe). I jolt physically and remember the pain no matter what I’m doing when the memory is triggered (it’s often just feeling the current pain that makes me relive the experience). They give me nightmares. I hear people often saying that we forget pain. But I never do. I still remember how I felt when I broke my leg when I was 7. And how it felt to walk through 3 airports, return a rental car, and drive myself to a clinic with a broken foot. I remember this pain in my pelvis like it just happened.

I guess technically it did just happen.

I have a follow up appointment to go over the biopsy results on the 16th. I’ll let you know what happens.

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. :)

Fibromyalgia Awareness Day

May 12, 2009

This is my first Fibro Day as a person with fibromyalgia. I’m still coming to terms with it myself, so I don’t know what I have to contribute to the community (either the fibro community or the healthy community).

I admit in the past, I had written fibromyalgia off as some kind of fake illness. I had met a man once who claimed to have it, but he wasn’t a very trustworthy person, so I wondered about his illness. It wasn’t for a couple of years that I worked in “Big Pharma” and heard about a new drug for fibromyalgia. The drug ended up being Lyrica, and there was a lot of skepticism out there about its application. It seemed like fibromyalgia had been previously a vague illness, a diagnosis of exclusion, but it now had some specific diagnostic criteria that coincidentally matched up with some of Lyrica’s indications. It seemed like a convenient money-making coincidence.

I had never known anyone with fibromyalgia at the time. I met a wonderful friend who was in the process of obtaining a diagnosis, and really sympathized with her fight. She was tired and in pain, and all the tests came out negative. She finally saw a rheumatologist who diagnosed her with fibromyalgia. I started reading up on it in greater detail to understand more about what she was going through. I read The Spoon Theory and tried to understand. At that time I was recovering from mono and knew all too well what it was like to be exhausted, but I had not talked to anyone about it. I just knew I had to keep going to work, keep earning a paycheck, and couldn’t complain about it. Since I didn’t have a “visible” problem, I didn’t think I had the right to talk about it.

Fast forward a couple years, and things started to get worse. It was hard to ignore when my body ached even more, and when I’d conk out after work or on my lunch break. When I realised I had the classic tender points, I was kind of in shock. I was a person with fibromyalgia.

Even worse: I had a disease I once believed was imaginary.

I’ve done so much reading on the subject. I don’t advocate as much as I should for myself. I’ve learned a lot, and every day I learn more about what helps and hurts me. I feel like I’ve come a long way, but have so much longer to go. I feel like I still judge myself and feel guilty about my abilities and disabilities, and I’m not clear about my needs. I try so hard to be helpful and cognizant of others’ needs, I just need to do the same for myself!

I think I will make a plan for the next year: I will educate others about fibromyalgia when it’s appropriate, I will advocate for myself, and I will report back on Fibromyalgia Awareness Day 2010 about how things have changed. I challenge you to do the same. :)

For more info:
Wikipedia on Fibromyalgia
Mayo Clinic on Fibromyalgia
WebMD on Fibromyalgia
National Institutes of Health/MedlinePlus on Fibromyalgia
National Fibromyalgia Association

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

things are improving

March 28, 2009

I haven’t posted in awhile because things aren’t too bad! An update is in order, though.

I’ve been on vicodin for my back for about a month. I’ve been able to walk around with less problems, and I can even lift some of the totes and boxes we’ve been packing. I’ve got to be careful, but it’s nice to feel a little more useful around the house. It’s amazing exactly how much pain I’ve been in. I still have weakness and numbness in my legs, which is annoying, but the decreased pain makes it easier to ignore the numbness.

With my back pain lessened, I now know the full extent of my fibro pain. Which is ridiculously annoying. The pain is kind of maddening, really… it’s like needing to stretch but being unable to stretch out the knots no matter how much I bend and contort. It’s also interesting that the narcotics aren’t touching the fibro pain. What an odd pain it is, that it can’t be touched by strong pain killers!

At night I’m taking Flexeril, and that seems to relax my shoulders (the most annoying part of fibro for me, I’ve discovered!) to make it easier to sleep. I know it doesn’t work for everyone, but if you haven’t tried it, and it’s hard to sleep because of the fibro pain and tightness, I highly recommend giving it a shot. Some nights it doesn’t help, but more often than not, it does. I can feel the stiffness melting away slightly, and that’s about the point when I fall asleep.

I wake up with tons of back pain and I can hardly stagger down the stairs to the couch, where I pop my first vicodin of the day and check my email and putter around online while it kicks in. It takes about an hour before I can move for real. I sometimes need a second vicodin 8 hours later, depending on what we’re doing. If things are *really* bad, I’ll take a third before bed, but I’ve only had to do that a couple times.

I had a followup with my doctor a couple days ago to talk about the progress. He was glad to hear it! He refilled my scripts and we talked a bit more about how I’m feeling. He wasn’t surprised to hear I’m still tired and still having fibro pain, but was glad I’m walking around more and less glued to the couch.

Even though things are improving, we’ve still decided that going back to work is not a viable option for me. I’ll talk more about disability next time.

Fibromyalgia as a legitimate disorder

March 11, 2009

Last week, my husband and I were going a bit stir-crazy being cooped up in the house so much. We’ve been busy packing, and my husband has been busy with schoolwork, but it was getting us down. We decided to pack up and take a day trip to Chicago (well, a quick overnight trip). I figured it’d be a great way of testing out my new pain control.

And I did do pretty well, I have to admit. I walked and walked and walked, with minimal complaining. However, my fibro flared up and made my shoulders ache. My skin hurt all over. I spent 3 days after we got home just lounging on the couch and dealing with nearly unbearable pain in my shoulders and neck. Okay, fibro, I get it. You win this round. But I still get credit for covering so much ground on foot in Chicago.

A news story was published today saying, “A Massachusetts anesthesiologist has been accused of fabricating results in nearly two dozen published studies that claimed to show after-surgery benefits from painkillers including Vioxx and Celebrex.” Other drugs included Lyrica and Bextra. (source) The plot thickens when we find out that this doctor was funded by Pfizer for 5 years to study the effects of their own drugs for pain control. It sure does seem shady. I would like to believe that Big Pharma has only one noble goal: to cure people. But I’m bitter and jaded (and an ex-pharmaceutical employee), and I know that every pharmaceutical company has the same goal, and it’s not about curing people. It’s about making money. Obviously they’re making money by improving quality of life for some people who can afford it, but the bottom line is the almighty dollar.

Fibromyalgia is a vague disorder (more of a syndrome), diagnosed by excluding everything else. Those of us who have fibromyalgia have a lot of similar symptoms (including symptoms that are not in the diagnostic criteria but probably should be), but I admit we’re an exhausting bunch. Our symptoms change from day to day, sometimes several times a day. We may not know exactly when our symptoms started, because they’re so vague and creep into our lives slowly over time. We may not be able to articulate what hurts and how it hurts because the pain is so complex, deep and throbbing in the muscles yet the softest touch on our skin feels like we’re being stabbed with a serrated knife. And, let’s not forget, those of us who are fat are usually told our problems are due to our weight, because that’s much easier than working towards a diagnosis and treatment plan for a bunch of annoyingly ambiguous symptoms.

This makes it very difficult for me to trust the pharmaceutical companies. I’m not sure they have our best interests in mind. Fibromyalgia has had diagnostic criteria since 1990, but it’s been fairly vague (with the exception of the Tender Point Test, which requires doctors to be very precise and consistent when conducting). Then along comes Lyrica, with a vague list of indications. Lyrica, meet fibromyalgia, “a textbook definition of an unmet medical need,” according to Pfizer (source). Unmet medical need, or unmet need for profit? Lyrica pretty much cleared the billion dollar mark in its first year (source), as well as opened the door for a whole new chapter in Pfizer’s portfolio: fibromyalgia drugs. Since then, Lilly’s Cymbalta has also been approved for the treatment of fibro, and there are more drugs coming down the pipeline.

It’s almost like fibromyalgia was tailored to fit the drug, not the other way around. The fact is, fibromyalgia is a real disorder, with real symptoms, and real people suffering from it. The symptoms may be vague, but they’re there, and they’re predictable. Not every doctor has bought into the reality of fibromyalgia as a disorder, but they also used to treat homosexuality as a disease and practiced bloodletting to treat fevers, so I have hope they’re going to come around eventually.

Unfortunately, I think fibromyalgia is just a victim in the crossfire between the need for more government-funded research and the profit-driven privately-funded research conducted by pharmaceutical companies. If the government funded more research in this area, they could strive to fund less biased researchers, such as the ones at universities. Pharmaceutical companies could spend more time manufacturing less expensive drugs with more of academia conducting research instead of Big Pharma doing the work. I want to see more research being done with chronic illness, and I don’t want to hear about doctors funded by Big Pharma grants sitting in a room together creating some diagnostic criteria to fit the indications for a new blockbuster drug. I know my solution isn’t perfect, and I’m not claiming this is the only right way to solve this problem, but I’m getting sick and tired of reading about how fibromyalgia is a “murky” disorder, and I’m even more sick of hearing that it’s all in my head. (One more link on the subject, here.)

And my disclaimer: I’m not arguing that Lyrica and Cymbalta are not effective for people. I know these drugs work and have turned lives around for many people suffering with fibromyalgia. I want these drugs to stay on the market, and I want people to continue using them responsibly, if the drugs are helping them. But what I don’t want is another conveniently vague disease plucked off the shelf to extend the patent life of a drug. We should be researching fibromyalgia for the sake of understanding it better, not for the sake of selling drugs.

wow, a happy post!

March 1, 2009

I finally went to my GP three days ago to touch base with him. He made a note at my request that I had to leave my part-time job. We talked briefly about my frustration that I’m always in pain and always tired and I felt useless. He told my husband to “kick her butt” and then said “but don’t hit the tender points.” Har har.

He agreed with me that Cymbalta and Lyrica weren’t the best fit for me, since I was concerned about negative effects of a psychotropic drug, as well as taking a medication that is likely to cause weight (Lyrica). The doctor agreed with me and said that both drugs are likely to cause weight gain, and agreed with what I said about taking an anti-depressant. We talked about how tramadol does well for my fibro pain, but doesn’t touch my back pain.

My GP was hesitant about going down the “slippery slope” of narcotic use, and I agreed with him but asked if we could try it. I was hopeful if my back (and hips and legs) would stop hurting, that I could maybe deal with the fibro pain better. He offered me Vicodin (hydrocodone + tylenol) for a month to try. He urged me to only take as much as I needed, and to avoid taking it if possible. I don’t want to get addicted to anything or build up a tolerance to anything either, but if it worked?

Boy, did it work! I took a pill that night and my back improved tremendously. I’ve always had a problem with the “Pain Scale” (link shows 1-5, though my doctors operate on 1-10) because my pain was always so mixed and complicated, and all over. I used to say I was always at an 6 to an 8, depending on the day. But once I experienced a moment with NO pain? Holy cow, I realised I’ve been living at a 9/10 or 10/10 for the last couple years. It’s been so awful that now that it’s gone, I realise exactly how bad it was. Now I’d say I’m at a 2/10, where it hurts just a little, but it’s SO much more bearable, that it’s fine.

You’d think because I was taking narcotics, I’d be sleeping all the time, and I’m really not. I admit I feel fatigued (which is different from tired), and that makes it hard to just jump back into things, but I’m in LESS PAIN. Being in less pain gives me energy! I can walk around a store with my husband! I’ve even gotten back into the kitchen to cook, which is something I haven’t done in a few months.

Also, I asked about a muscle relaxer for the fibro, and my GP offered Flexeril. I take it at night, instead of a Vicodin, and it relaxes my knotted shoulder muscles enough to make it easier to sleep. Sometimes I put the heating pad on my shoulders, too. The last 3 nights, I’ve slept through the night (except to get up to pee once), and woken up feeling better and in less pain than usual.

Who knew this was even POSSIBLE? I can’t help but wonder if this is only a very temporary effect, but even if it is, I want to remember what it was like to have a little bit of my old body back. And I want to document it!

I haven’t found a cure, but I may have found a way to manage my pain.

more of the same.

February 22, 2009

Just a short update. I still haven’t gone back to my GP to request the rheumatologist’s suggestion of Lyrica and Cymbalta. The more I think about it, the less interested I am in taking a drug for depression that could affect my brain chemistry (because I’ve had problems with SSRIs in the past, even though this isn’t an SSRI), and Lyrica is known for weight gain. Perhaps if my doctor could promise to refrain from giving me shit if I gained weight from taking it, but I’m not sure that is physically possible.

I’m still learning limits and on days when I’m not hurting, I’m usually exhausted, so I sit around frustrated at all the things I’d like to do but lack the energy to do. Frustrating isn’t even an adequate word to describe how I feel.

I’m planning on making a doctor’s appointment this week so he can document in my medical record that I quit a part time job for health reasons. I’m thinking about applying for disability, too. I’m dreading seeing the doctor again, for various reasons, not the least of which being I don’t feel like he takes me seriously.

And another fibro update: I know I’ve had more stomach problems the longer I experience fibro symptoms. I don’t know if it’s outright IBS or not, but it sure seems like it. I’m normally a healthy vegan eater, with lots of protein, good carbs, fiber and veggies. But a friend gave me some M&Ms candies two days ago and I had a small handful. Then later I had a pina colada with whipped cream on top (okay I had two of them), and I figured since I was already hurting, what could a little more damage do?

A LOT. OMG, I was MISERABLE. Stomach pain, trips to the toilet, repeat repeat repeat. It was terrible. Another lesson learned: NO DAIRY.

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.