Rheumatology Research News

The American College of Rheumatology recently held their annual scientific meeting. All of the abstracts from research are available online.

Lots of articles have been in the press recently with short snippets of information from the meeting. Notably, several new biologic drugs are showing promise in clinical trials, including two that have been specifically targeted at Psoriatic arthritis: Golimumab and Ustekinumab. The former is another TNF-alpha inhibitor (like Remicade, Enbrel and Humira). The latter is the first interleukin 12/23 inhibitor to show promise in the treatment of Psoriatic Arthritis.

Golimumab has also been in trials for Ankylosing Spondylitis.

It's nice to see the less common rheumatic diseases being targeted in clinical trials as opposed to getting drugs that worked for rheumatoid arthritis applied as afterthoughts.

Remicade FAQ

I've learned some more about Remicade and heard some questions from others. I'm sure that this information could be useful to someone currently taking or considering taking Remicade. This is not a complete guide to Remicade and is not medical advice. I offer this information as a service to others considering or currently undergoing Remicade treatment. For full information about Remicade and other treatment options, talk to your doctor or pharmacist and read the prescribing information.

Q. What is Remicade?
A. Remicade is a biologic response modifier (specifically a Tumor Necrosis Factor Alpha, TNF-alpha, inhibitor) used to treat autoimmune diseases. Currently it is FDA approved for the treatment of Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Chron's Disease, Ulcerative Colitis and severe plaque Psoriasis.

Q. How do you take it?
A. Remicade is given my intravenous infusion in a doctor's office, clinic, hospital or home health care setting. Infusions last anywhere from 1 to 4 hours. IVs aren't all that bad. Even if you don't have "good" veins, I've found that most infusion nurses are really good or know lots of tricks to make bad veins show up or both.

Q. How often do you take it?
A. An initial "ramp up" phase begins with infusions at weeks 0, 2 and 4. After that point, the typical interval is every 8 weeks. The dosing intervals are flexible, however. Some patients get infusions as often as every 4 weeks.

Q. How soon will I feel it working?
A. Improvement varies from person to person. Some people feel the effects immediately. For others it may take a few weeks, especially during the initial loading doses.

Q. What's with the dosages? I've heard it as 3 mg/kg and as 200 mg. Which is right?
A. Both. The recommended starting dosage for Remicade in Rheumatoid Arthritis is 3 mg/kg (for AS, PsA and psoriasis it is 5 mg/kg). Meaning, for every kilogram of your body weight, you receive 3 mg of Remicade. So, a person weighing 150 lbs weighs 68 kg. They would get 68 kg x 3 mg/kg = 204 mg. Usually doctors will use standard vials (100 mg each) for dosages, so they will round up or down. In this case, a 150 lb patient would most likely receive 200 mg or ~3 mg/kg.

Q. What is the maximum dosage?
A. 10 mg/kg is the maximum dosage. As stated above, the total mg dosage will vary depending on your weight.

LOLcat President

Description: Picture of a cat on the White House briefing room podium. Behind the cat is a White House seal on the wall. The text "this not so bad" is printed across the top of the page.

picture from I Can Has Cheez Burger

Reconciling faith, belief and a life of illness

Most of the time, life is pretty normal. Things go on, albeit at times painfully, and the reality of living a life of with a chronic illness does not have as profound an effect as our healthier counterparts may think. But, there are times when, like it or not, the brutal reality of things comes back into focus.

The stages of grief have been noted in those diagnosed with chronic illness. A grieving process over the might have beens seems perfectly normal when at least some of your hopes and assumptions about the rest of your life go down the drain along with a diagnosis. This is normal--the new normal of your life.

I get by pretty well in my day to day life. Yeah, I may do some things differently or more slowly than others, but that's fine. I try not to think too much about future possibilities or worry too much about what tomorrow will be like. I work, eat, sleep, play. I also pray and meditate and go to church. I try to have faith that somehow what has happened in my life has a purpose.

Yet, there are those who see my life and my health as an exhibition in my lack of faith or belief. They say, "If you believe, your body will get better". If you were just more faithful to God. If you just prayed more. If you really believed, God would heal you. This person will lay hands on you, and you will be better (yes, this really happened, though in a more extreme form--think lay exorcism). If you repented your sins, you would get better.

Those are the things that hurt most. I did not ask for arthritis. I did not let Satan into my life and into my joints (sounds a little silly, doesn't it?). I do get angry sometimes. I get upset. I ask God, "Why me?". But even Job, God's faithful servant, questioned the events in his life.

Job lost everything: health, family, earthly posessions. His friends blamed him for his misfortune. He questioned God and asked why. He didn't curse God, but he still felt the pain and raw emotion of a life less than normal. Job was rewarded for his faith. I have faith that I will be too, though perhaps not with good or restored health. I don't know God's will, but neither do they.

I have faith that I will survive. I will have a full life. I am blessed, and I will be blessed. I will have pain, but what life is without it? I am no less human or Christian because of my chronic illness. I challenge those who see illness as an expression of poor faith and/or sin to reconsider that belief (perhaps study Job). And then, consider how you and your faith community treat those who are chronically ill or disabled.

Book on Psoriatic Arthritis coming out soon

100 Questions and Answers About Psoriatic Arthritis, by Dr. Campion Quinn (via Matt & That) is a new book--finally(!)--with information about PsA.

I haven't read the book yet, and from what I can tell, it isn't even available for order yet. But, I'm glad to see we finally get a book. More resources can only be good.

This explains a lot...

According to a survey conducted by the First Amendment Center :

Sixty-five percent of Americans believe that the nation's founders intended the U.S. to be a Christian nation and 55% believe that the Constitution establishes a Christian nation

(emphasis mine)

Other gems from the poll:

• "Just 56% believe that the freedom to worship as one chooses extends to all religious groups, regardless of how extreme — down 16 points from 72% in 2000."


• "25% said 'the First Amendment goes too far in the rights it guarantees'"

This all hits close to home due to recent events in my community. A small Ismaili congregation wanted to build a jamatkhana in our neighborhood. The outpouring of filth from my neighbors was disturbing, even for a suburban city deep in the Bible Belt. At zoning hearings and other events, large numbers (150, I believe was the record) of residents would show up to protest the possibility of such a facility being built in the city. I can guarantee if a Christian church had proposed building their facility there, no one would have said a word. It's ok to be Christian, but it's not ok to be anything else. And that saddens me.

Oh, and to all the people who think the founders meant for the USA to be a Christian nation. Please, study history. Many of the people who first came to this country came for (gasp!) religious freedom. They didn't want to be part of the Church of England, so they left. Many of the founding fathers weren't Christian in the current evangelical Christian view (Thomas Jefferson, for example).

Now, the people who think the Constitution establishes a Christian nation. Please, for the love of God, read the freaking Constitution. There's this thing called separation of church and state. If a church or official religious organization gets involved in politics, they can lose their IRS non-profit status or be fined. All because of that principle.

When did people get so dumb?

I am bored, but...

The internets say I am a Nerd God. Though I am surprised how high my score was for Science/Math (not my best subjects by any means).

Rove Pranked

I'm a big fan of pranks. As are quite a few of my friends. But the only thing better than a really good prank on one of your closest friends is a prank on a skeevy politico like Karl Rove. And, well, I have a special place in my heart for the car wrapped in cellophane prank. These guys did better.

It's being reported that Rove's Jaguar had Post-It notes on the windshield saying "King Rove" on the windshield, an "I (heart)Obama" bumper sticker on the windshield, and two stuffed eagle toys on the hood all wrapped up with cellophane. All this was done while Rove's car sat in the White House parking lot.

(Visual description: Karl Rove's Jaguar wrapped in cellophane)

HPV - not just for girls

Recent research indicates that HPV may increase the risk of getting throat cancer.

Personally, I've always thought that if you're going to vaccinate girls against an STD, why not vaccinate the boys, even if they don't get cancer from it. The more people that are vaccinated, the fewer people will be infected. From the accounts I've seen, this may lead to a push to vaccinate boys as well.

Sidenote:
I can see it now. "I would honey, but it might give me cancer." That's an excuse waiting to happen.

I'm Still Here - An Update

It's been a crazy past few months. Let me just say that moving a long distance and moving again 3 months later (out of a hell-hole of an apartment) is tiring and stressful.

We are, thankfully, in a lovely home now. We have good neighbors, a fenced yard (yay! Though one of my dogs has an issue with doing her business when the grass is wet; such a princess), and everything I need is on the main level with no stairs getting into the house except for a small step to enter. It is quite nice to be able to avoid stairs after living in a 3 story townhouse for 2 years.

I've been continuing with Remicade, and I'm now getting the infusions every 4 weeks. I maxed out in dosage at 500 mg (8.6 mg/kg) due to adverse reactions, so if it stops working, I'll probably have to change to a different drug. So far, the new interval seems to be about right. I start having morning stiffness and pain around 3.5 weeks, and after 4.5 weeks I need to use a cane to get around most days. I can definitely handle a few days of pain much better than a few weeks.

My job has been going pretty well. It's not as challenging or interesting as I would like, but I hope that it gets more so soon as I take on the duties of someone who just quit last week.

Sweet!

Well, apartment life will be over soon--thank God. Let me tell you, I am not a fan of living above and next to smokers. I respect people's right to do whatever they want, but I really freaking hate it when other people's cigarette smoke gets into my apartment. I much prefer to breathe, thank you very much.

Now, where was I? Oh, the good news. We close on our new house in 2.5 weeks. Not only are we getting a pretty sweet deal (closing costs mostly paid for and $5,000 worth of appliances. Can you say front-load LG Steam Washer?), but I was reading the local business journal, and a new Target will be opening up just down the road from the house! No more driving across town to get to the only Target nearby. Now, if it will be a SuperTarget, I'll be a happy camper. I love me some one stop shopping.

U.S. Citizen Deported.

This is wrong on so many levels.  I am ashamed of my government.  I am angry.

Pedro Guzman, a 29 year old mentally disabled man was arrested for a trespassing charge and deported to Mexico.  While that story, which is what the government would like you to believe, sounds reasonable, there is a major issue that makes what the L.A. County Sheriff's department and the Immigration and Customs Enforcement (ICE) agency did reprehensible.   

Guzman is a U.S. citizen.

The ACLU is assisting Guzman's family in filing a lawsuit against the Department of Homeland Security and the Los Angeles County Sheriff's Department.  The suit claims that Guzman was a U.S. citizen and was wrongfully deported.  The ACLU has Guzman's birth certificate stating he was born in L.A. County, California.  If you remember your basic government classes in high school, you will recall that any person born in the U.S. has automatic U.S. citizenship. 

Guzman's mother is now searching Tijuana for him.  According to her statements, Guzman does not have the mental capacity to find his way back home, and he may be easy prey to robbers.  The government, however, says it has done nothing wrong.  Yet, Guzman had previously done time for drug charges, so his citizenship and more information about him could have easily been found.  According to the lawsuit, the Sheriff's Department obtained Guzman's signature for voluntary removal from the U.S.  I have to wonder what tactics they used.

U.S. Immigration and Customs Enforcement confirmed Guzman had been deported and said the agency had done so correctly. "ICE has no reason to believe that it improperly removed Pedro Guzman"

I am sick of injustices like this by our government. 

Disabled Parking Abuse

We've been living in an apartment complex for the past month or so.  We were quite fortunate that a ground level apartment with disabled parking (2 spaces for the building) was available when we wanted to move in.  The 2 spaces serve about 14 apartments, mine included.  On many occasions, at least one of my neighbors with no placard or plate would park in one of the disabled spaces.  On several other occasions, another neighbor with an expired (for 5 months) temporary placard, would park in one also.  There are plenty of parking spaces for this building, just the disabled spaces happen to be closest to the breezeway entry.

I have called the police and had them come out for one of the cars (without the expired temporary permit) twice so far.  This person continues to park there.  This morning when I left for work, both disabled spaces were taken by cars without placards or plates.  There were at least 3 open parking spaces no more than 100 feet from the entrance.  I am more than annoyed.  While I don't need the space today (or yesterday), at any moment my body may decide that it doesn't want to function properly.  When that happens, the ability to use the disabled parking space really makes a difference in my ability to take care of things myself. 

I don't understand why these people think that it is okay for them to park in a disabled parking space.  I know for a fact that at least one of the drivers of these cars has seen me use the disabled space.  When I use the disabled space consistently (once Remicade wears off and I can no longer walk long distances), they tend to avoid parking there, but as soon as I begin parking in a regular space, they begin to treat it like their own personal reserved parking space.  Even if they think they have reason to use those spaces, they need to do like everyone else and go get a placard from the DMV.

Where we live the penalties for parking in a disabled space are mild for first time offenders ($50 fine).  Second time offenders get a $200 fine and must perform 40 hours of community service for an organization that serves the disabled.  I only hope that the primary offender will have to pay the larger fine and do community service.  According to our apartment lease, the apartment complex will tow those who park in disabled parking spaces...  Maybe that's what has to happen. 

Remicade #5 and a new rheumatologist

Last week I had my 5th Remicade infusion at my new Rheumatologist's office. The new doctor seemed quite compassionate and observant. After discussing how the last 400 mg infusion went, he determined that it would be in my best interest to increase the dosage to 500 mg this time. He is re-running all the standard rheumatology bloodwork (ANA, rheumatoid factor, ESR, etc.) as well as my normal CBC and liver functioning tests (thanks to Methotrexate).

When I went in to the doctor's office, I was using the cane. I walked out after the infusion without it. The infusion nurse and nurse's assistant were very sweet and the infusion room was rather large with very comfortable recliners (though they are difficult to get out of). They gave me the benadryl IV then the Remicade. In total, the infusion lasted about 1.5 to 2 hours. Not too bad. I went in around 1:30 and left at 4:15--that included new patient paperwork, vitals check, waiting for the doctor, seeing the doctor, and getting the infusion.

The bad:
The doctor's office is not easy to get to. It's located in an older part of town (on a hill). The disabled parking spaces are at ground level (lower side of the hill). The doctor's office is on the top floor (accessible from the second parking lot on the high side of the hill) with no access from the ground level. There are no disabled parking spaces in the second parking lot and no crosswalk between the parking lot and the office entrance. I parked in the disabled parking space, thinking it would be a reasonable distance from the office and have no stairs to traverse. Boy was I wrong! I ended up having to climb a flight of stairs to get to the office. At least next time I'll know. It still sucks. It really made me mad that day because I was in so much pain and that was just one more thing to make the day difficult.

Creepy!

Leave it to the Japanese to create a robotic toddler.  The concept makes sense: use the robot to study early childhood development (because what parent in their right minds would allow their kid to be the subject of early childhood development experiments?).

Is it just me, or does it look like something out of a horror movie (a la The Grudge)?



(Visual Description: A robot made to look like a Japanese toddler sits in a chair. Its entire body is done in a shade of gray, including the skin. Its eyes and hair are black. The facial expression on the robot seems to be one of either surprise or fear. A little boy leans over to look at the robot.)

Ready, set, brawl... in the state senate

A fight broke out yesterday in the Alabama state senate.  I love the headline:
State Senate Smackdown

It sounds like a high school fight. 

Bishop, 69, said he hit Barron, 65, because Barron called him a "son of a ..."

"If he calls me that again, it'll happen again," Bishop said later.

Barron denied calling Bishop that name. "I didn't call him anything."

"But I can tell you, when I come back, and you call me a son of a ..., then yes, I might whup you again. I'm not going to lie to you. And I would hope that you would, if you've got any gumption or you have any respect for your mother.

Note to all other Alabama state senators: don't launch any "yo momma" jokes around this guy, you might just end up getting hit.

Scott Adams would be happy.

You've got to be kidding me

Paris Hilton "Crying" Behind Bars.  Apparently that's "breaking news" for CBS.  Give me a break.

Remicade #4 (updated)

I had my fourth Remicade infusion yesterday. I took my Tylenol in advance, like instructed to prevent a headache. I also had a benadryl IV to keep me from having another allergic reaction (and this time I didn't get all giggly--I didn't even get sleepy). My dosage was increased again to see if the effects will last longer (the last IV lasted for about 2 weeks).

The infusion itself was pretty uneventful, but for the first time, I felt the effects of the Remicade almost immediately. I didn't need my cane to walk to the car. I didn't even need it to get up the steps at my house. I have energy. I don't know what to do with myself. I'm trying to pace myself so as to avoid overdoing it and relapsing.

It's an odd feeling to have little to no pain or stiffness or swelling after having been in constant pain, stiffness and swelling for at least a year. It almost feels like a high.

Update:
This infusion lasted for a full 3 weeks. It's been a steady decline since, but it's encouraging that I felt so great for 3 whole weeks.

I'm very hopeful that my new rheumatologist will work with me to get the right dosage so that I can have the results last longer.

Strange invention

(Visual description: a woman holds a "C" shaped red oddity in her hand. It is thin on end of the "C" and wider at the other end.)

I admire inventors, I really do. Especially the ones that take something very common that no one would think to re-invent it.

So, I have to say that I'm very impressed by someone who can think of something like ladies underwear and come up with a new variation. I don't really think it would be comfortable, but the aim for truly invisible underwear seems to have been met with this contraption.

C-String has a flexible internal frame that hugs and holds it to the body both securely and comfortably. Your modesty remains safely covered at all times.(link)

And I'm back

I have officially moved back to the South. This has involved:

• Putting the house up in Maryland on the market (it's under contract-yay!)


• Moving--more appropriately, supervising movers pack/load/unload


• Driving long distances, parts of which include going through DC (Sometimes you just cannot escape DC traffic, even on a Saturday morning)


• Transporting two dogs, by car, for over 12 hours


• Flaring up as the Remicade wears off


• Living in a ~1000 sq. ft. apartment until the house is sold and we find a new house.

So yeah, it's been a little busy. I started my new job doing security stuff for a financial institution. I don't really know exactly what I'm going to be doing, but it should be interesting. My current tasks involve planning the automation of some menial tasks--looks like programming is in my future.

I was able to get in to see a rheumatologist next week. I'm a little apprehensive about the only doctor in town who was willing to see me in less than 6 months, but I won't complain. He's board certified in rheumatology and pain management, so maybe he'll be willing to give me some pain medicine for those really rough days. No matter, I get Remicade next week, and that's the important part.

Personal Protection-- The Tampon Taser

Just when I thought I'd seen it all when it comes to personal protection devices (tasers, tasers that look like cell phones, pepper spray, pepper foam, etc.), someone comes up with something that, if nothing else, made me laugh.

The Pink Stinger.

The Pink Stinger packs 50,000 volts of power at your finger tips. Because it is an advanced taser gun, you do have the option of stun or taser capabilities with a simple click of a switch. In the Stun setting, you need only make contact with intended target via the 2 prods for an effective toxic shock rendering the victim disoriented, demoralized and embarrassed . When shooting in Taser mode, 2 extra absorbent cotton tampons with barbed probes and 14 ft. of wire are expelled and propelled by compressed nitrogen. Electric current then passes to the body, where the probes have attach to the clothing or bare skin, causing central nervous system disruption, possible urination and certain humiliation. Optimal target range for the taser is 7-10 feet with a maximum of 14 feet. Absorbency range of tampon is 6-9 grams. The included batteries and compressed nitrogen cartridge store neatly in the pink zapplicator casing for easy replacement.

I can only imagine the reaction an attacker would have when a woman pulls some tampons out of her bag. But, catching an attacker off guard is a good thing. I tend to think that the cell phone tasers are more practical. I'm sure a woman walking through a dark parking lot carrying tampons in her hand would raise some questions.

May is National Arthritis Month

Did you know that arthritis consists of over 100 different specific diseases? Millions of Americans of all ages, from toddlers to twenty-somethings to the elderly, have some type of arthritis. In fact, arthritis is the leading cause of disability in the U.S.

Nearly 19 million U.S. adults reported activity limitations because of arthritis each year during 2003–2005. Work limitations attributable to arthritis affect more than 5% of the general U.S. population and nearly 30% of people with arthritis. Each year, arthritis results in 750,000 hospitalizations and 36 million outpatient visits. Direct medical costs for arthritis were $81 billion in 2003. Arthritis is not just an old person’s disease. Nearly two-thirds of people with arthritis are younger than 65. Although arthritis affects children and people of all racial and ethnic groups, it is more common among women and older adults. (link)

The Arthritis Foundation's theme this year is "Walk Away From Arthritis". This month, local Arthritis Foundation chapters across the U.S. will be hosting Arthritis Walks to raise funds for local AF chapters that provide services to people with arthritis, promote arthritis research in their communities and raise awareness about arthritis.

I Hate Comcast

For the past 3 days, a coax cable has been duct taped across the walkway to my house. On top of that, Comcast workers dug up a 5 foot by 6 inch section of my grass and didn't bother to put the grass back. I understand that they may need to do something like that as a temporary quick fix, but 3 days is my limit--especially when I'm trying to sell my house. Curb appeal down the drain.

I called Comcast this evening. They apparently have absolutely no record of any such work having occurred on my street in the past week! The customer service rep I spoke to said that someone will be out to bury the cable and replace my grass tomorrow morning. I certainly hope they show up and actually bury the cable this time.

Good information on PA

Sometimes I feel like Johnny-Five from Short Circuit--"need more input"!

I was searching for the prevalence of PA (estimates range from .3% to 1% of the population). Of course, there's not much detailed information about PA on the Internet, in books, or in research since PA only affects a small portion of the population. PA is usually an afterthought in a study for Rheumatoid Arthritis (RA) or Ankylosing Spondylitis (AS). I've been looking around on the Internet to substantiate my doctor's claim that PA rarely goes into remission. Well, I found my answer--he's right. The site linked below gives the best information regarding prognosis of PA that I've found so far.

According to this site, less than 20% of patients go into remission. And less than 10% have a full remission where they can go off of all medication with no signs of joint damage on X-rays.

They give a list of items that indicated a relatively good prognosis:

• Male


• Fewer joints involved


• Good functional status at presentation (this relates to ability to carry out normal daily tasks at work and home)


• Previous remission in symptoms


• Some genetic subtypes (this can determined by a blood test looking at a genetic marker called an HLA-group)

Then, of course, the features associated with a poor prognosis:

• ESR >15 mm/hr at presentation


• Use of medication prior to initial consultation


• Absence of nail changes


• Joint damage on x-rays

Sometimes my penchant for researching this stuff comes back to bite me.
My score:
1 of 5 for good prognosis.
3 of 4 for bad prognosis.

This doesn't make me feel very hopeful.

Straddling the Line

Today is Blogging against Disablism Day. I figured I'd come out of my blogging hiatus (due to a really stressful move halfway across the country) for a quick post on this topic.

I often feel like I'm in between two worlds, not fitting either of them well.

Some days, I look pretty normal. I walk, drive, talk and function pretty well. I may still be hurting. My immune system may still be raging a war against the rest of my body. Though I look fine, I may just want to go back to bed and rest from the fatigue of being awake. If you look closely, I may walk rather stiffly and slowly. I may not use my hands very well. My fingers may be contorted into odd positions. On those days, I am one of "the normal".

When I pull into the disabled parking space, I may get cursed out or confronted because I look normal by both the able bodied and the disabled.

My requests for assistance may be frowned upon. I may have to prove that I need help. When medical explanations are requested, I give my diagnosis: psoriatic arthritis (PA). But arthritis sounds pretty innocuous (as in, "Oh, yeah, I have a touch of arthritis in my . I take loads of and it's alright"). So, arthritis as a disability seems off to many people since it's just a problem with your joints.

I am accused of faking. Of desiring people's sympathy. Of being a hypochondriac.

Until this past year or so, I had slipped completely by in the "normal" world. I had never faced any discrimination or attitudes about disability because I did not look disabled, and for the most part, my health did not affect my mobility or other daily activities. I truly encountered my first problem with someone's attitude against disability when I accepted a new job and tried to arrange for parking within my mobility limits.

Then there are the other days. Days when I am lucky to make it out of bed and off to work without crying from the pain. When simply buttoning a shirt makes me cry. When the visible signs of my disability are there, be it my cane or the obviously halted gait or a limp, I don't have to explain myself quite so much.

But then, I am different. Though I am no longer scorned for using the disabled parking spaces, I am stared at. People point or whisper as I pass them on the street or in the store. Or, on the other end of the spectrum, I am ignored. The door that was being held open for the woman in front of me slams in my face. Then the middle ground, where complete strangers feel compelled to ask what "I did to myself".

Back and forth, I float between two worlds. Neither is better than the other. It would be far better if everyone treated each other with respect. I don't expect everyone to understand what I am going through or how PA affects my life. I do hope that they will respect my knowledge of my body and my illness enough to trust my decisions.

Relocating

What good are relocation companies if they can't help you find something simple, like short term storage? I thought their job was to help make the transition easy, not tell me to "Call every self storage place in the phonebook.. Oh yeah, you don't have a local phone book do you? Well, look at the yellow pages online".

Yes, that's helpful.

Oh well.

Pack Rats

Moving makes you realize just how much junk a person (or two people in this case) can accumulate. Three trips to the dump in the last week. How depressing is that?

Shortage of Rheumatologists: Feeling the Pinch

According to the Arthritis Foundation, the number or rheumatology patients is increasing while the number of practicing rheumatologists is decreasing. I hadn't really seen any evidence of that until today. Today, I am trying to find a new rheumatologist in my new city. Said city has one of the best rheumatology departments in the country, but only about 15 practicing rheumatologists in the metro area (which has a population of about 1 million).

For arthritis patients, continuity of care is very important to prevent irreversible joint damage or systemic damage. So, when moving to a new area, it is very important to see a new rheumatologist as quickly as possible. It is even more important if you are on an IV drug regimen like Remicade. Lapses in treatment schedule allow the levels of the drug in the body to drop, causing inflammation, swelling, pain and possibly joint damage.

For the reasons above, I was hoping my rheumatologist here in Maryland would know someone in my new city or do some research for me. He did not; so today, I started calling rheumatologists in my new city. The earliest one could see me so far is July. The major rheumatology center at the teaching hospital has a wait of about 6 months. I am due for my next Remicade infusion on 31 May. I need someone to take mercy on me and at least give me my medicine. So now, I need to have my rheumatologist try to talk to another rheumatologist and see if they will budge.

It's just very frustrating. And this is in a city that has choices among rheumatologists. I wonder about the people who have to drive hours to see a rheumatologist. And the ones who only have one rheumatologist near them. What happens if that doctor retires or passes away? It makes me wonder why rheumatology is not chosen as a specialty by medical school graduates.

So, for once, I am feeling the pinch of this shortage. I am frustrated and upset. I'm trying not to take that out on anyone I've spoken to at these clinics, but I need my medicine. Today is the best I've felt in about two years. I don't want to have to suffer needlessly when a simple drug treatment could keep the inflammation, pain, swelling and damage at bay.

Paint

The bad: Paint fumes give me a nasty headache and make it difficult to breathe.

The good: My stairwell now looks presentable.

Also, it is impossible to keep dogs out of paint. Both of my dogs now have splotches of (white and beige) paint on their (black) coats from rubbing up against the walls. At least the walls still look ok!

Government Computer Security: Still Pretty Bad

The annual FISMA grades are to be announced for 2006 sometime today. From the initial reports, the scores are still pretty bad at a C- for the entire government; though, overall, the government did score better than last year's D+ grade. (I'm sure some member of Congress will bill this as a "success story.")

Of the 24 agencies that must file FISMA grades, 7 received grades of A (from this article). Of the remaining agencies, 13 received a grade of D or below.

Some highlights:
Good Scores

• Agency for International Development (USAID) - A+


• Department of Justice - A-


• Social Security Administration - A

Failing Scores

• Department of Commerce


• Department of Defense


• Department of State


• Department of Treasury

And finally, the Department of Veterans Affairs didn't even submit their report. Let's just say, based off of their issues with laptop loss, they probably would have failed anyway.

Of note, for the first time since its inception, the Department of Homeland Security didn't fail (source).

These scores, and the lack of improvement show that FISMA is not succeeding in making government IT security any better. It has ended up being a paper exercise with no repurcussions for failure. As a former government employee, I know that security is considered a high priority in some agencies, but others just don't care. To me, it seems that some agencies that should care (DoD, DHS, State, etc.) have done little to protect their information systems.

So It Goes...

Kurt Vonnegut died yesterday at the age of 84.

I'm a huge Vonnegut fan. I read Slaughterhouse-Five in high school (for my Junior year English class no less). I absolutely loved the sci-fi juxtapositioned against war torn Dresden. During high school I struggled quite a bit (like pretty much every other teenager) with the usual things as well as health issues. Because of everything going on, I often felt as if I were watching myself go through life from another plane, and Vonnegut's writing in Slaughterhouse-Five spoke to that and put words to what I had never been able to describe. I always felt "unstuck in time." Vonnegut, through the Trafalmadorians, likened human life in moments of time to "bugs trapped in the amber of the moment". And that time is unmoving, like a mountain range; each individual point in time at a distinct place on the range that cannot be changed. Life and death are just part of it all.

Vonnegut clearly did not believe in free will. I don't really know where I stand on that; I never have been able to come to a clear decision. But all too often, the refrain "So it goes" seems to sum it all up. Things just happen.

"So it goes," Kurt Vonnegut.

w00t!

No more waiting. Much less uncertainty.

I finally got the job offer in another city. Pay's a little less than what I was hoping for, but it's still good considering the cost of living is so much lower there than here. The company will pay to move my stuff and for a house hunting trip.

So, things are moving quickly. This weekend will be spent getting the house ready to put on the market. I've already done a decent amount of de-cluttering and re-organizing. Nothing like a major move to make you re-think the usefulness of any given item. So, here's hoping our house sells quickly!

Researchers Identify Another TNF Receptor Linked to RA

Researchers at the Kobe University School of Medicine in Japan identified a new TNF receptor and found that it was linked to rheumatoid arthritis. The article is an interesting read, even though it's over this IT geek's head.

The good news is, research like this will lead to new treatments. New treatment options are a good thing for people with inflammatory arthritis.

Bork Bork Bork!

I love the Swedish Chef, especially when he's trying to do something with the chicken.

In Cybersecurity, is a good offense the best approach?

General James Cartwright, commander of the Strategic Command (STRATCOM) thinks so. Last month he gave testimony to the House Armed Services Committee indicating that a "purely defensive posture poses significant risks" (link via a Wired article by Bruce Schneier). Cartwright is of the opinion that the U.S. needs to be able to fight its cyber adversaries "when necessary, to deter actions detrimental to our interests."

I have no problems with offensive strategies for computer systems defense under the right circumstances. However, when a military commander starts discussing offensive strategies, I get a littled worried. STRATCOM is responsible for planning and directing cyber defense strategies for the Department of Defense. When STRATCOM's commander discusses offensive measures as a defense, you have to wonder how measured an offensive response would be.

The Department of Defense is a very large government entity comprising both the military (all branches) and several civilian agencies (or joint agenices, both civilian and military). DoD also has some of the most sensitive government information on its networks. The sensitivity of data as well as the nature of DoD make it a prime target for cyber attacks, but is unilateral offense a good strategy?

Due to the complexity of some sophisticated computer based attacks, it is not always possible to know where an attack originates or the intent of the attack. If offensive tactics are to be taken in some events, what is to say that the processes and procedures for responding will be sufficient for every type of attack? When those processes and procedures are insufficient, who will make the decision to attack or not?

Particularly worrying to me is the prospect that a US citizen's computer will be attacked or that a country with which the US has a shaky relationship will be attacked. What happens if DoD is wrong? Diplomatic relations with an entire country could be compromised because DoD chose to launch an offense against an attacker or who they thought was the attacker. An attacked country could possibly view an offensive attack as an act of war.

While I agree that sometimes offensive strategies are necessary in computer defense, there are far too many gray areas for our government organizations to be making offensive moves. Fighting back is not the only answer to defense. The government is riddled with computer security problems, as evidenced by the FISMA report cards (DoD got a grade of D in 2003 and 2004). It would be prudent for DoD to fix its basic security issues before it goes on the offense.

Scary...

A Nevada judge has called a man's child pornography offense an issue of "impulse control" (via Feministing). The man was sentenced to up to 18 years in prison for posessing more than 800 pornographic images of children and will be eligible for parole in 2 years. But, based off of the judge's comments (see below) before sentencing, it's a wonder the man was given any prison time.

These kinds of offenses are problems with impulse control.
...
When I say that, it's my understanding that most men are sexually attracted to young women. When I say young women I don't just mean women that ... you should be attracted to. I mean women from the time they're 1 all the way up until they're 100.
...
It's likely that most people would find young girls sexually attractive.

The judge's comments are disturbing. Perhaps someone should be investigating if he has child pornography since he seems to think it's perfectly normal to find young girls sexually attractive.

I need a shower now.

And I thought I was weird...

Keith Richards of Rolling Stones fame, and quite possibly the most well-known drug user in the world, admitted that he "snorted [his] father".

He was cremated and I couldn't resist grinding him up with a little bit of blow. My dad wouldn't have cared... It went down pretty well, and I'm still alive.

I know it's Keith Richards and all, but damn. However, the best line in the article:

I was No. 1 on the `who's likely to die' list for 10 years. I mean, I was really disappointed when I fell off the list.

That's one odd man.

Still waiting...

I know patience is a virtue and all that, but I really just want to know what's going on! Maybe today I'll find out.

In other news, I'm absolutely exhausted and hurting. Every time I think that I'm doing better, I end up overdoing it and paying the price the next day.

Update:
Still waiting on word about the job in another state. When someone says the beginning of the week, I think Monday or Tuesday. Now it's Wednesday and I'm debating with myself whether or not it's too early to call and check on the status. I think I'll wait until Thursday. Thursday is definitely not the beginning of the week.

Update #2:
Well, they're still waiting for approval for the relo package. Apparently it has to be signed by 5 people fairly high up on the food chain. This better be one good relo package! HR says I might have something by the end of this week, but most likely, it'll be next week before I get anything.
Waiting sucks.

Arthritis News

Biologics and Pregnancy
Two studies were presented in February seem to indicate that the use of Enbrel or Humira (both Biologic Response Modifiers) during the first trimester of pregnancy poses no risk for adverse outcome. This isn't definitive as sample sizes were small, but it is encouraging.

Arthritis Pain Processed in Same Part of Brain as Emotions and Fear
Research indicates that arthritis pain is processed by the same part of the brain as fear and emotions. It was a small study (12 patients), but the research could lead to a greater understanding of the disease. This also explains why emotions affect arthritis pain.

Merck Seeks FDA Approval for New COX-2 Inhibitor
Merck is seeking FDA approval for a COX-2 inhibitor, Arcoxia. The drug, if approved, would be one of only two COX-2 inhibitors available on the market. Celebrex is currently the only cOX-2 inhibitor available. COX-2 inhibitors are a type of anti-inflammatory drug, but they are less likely to cause stomach upset than traditional nonsteroidal anti-inflammatory drugs (NSAIDs). Although there are cardiovascular risks associated with COX-2 inhibitors, the benefit these drugs give to many living with inflammatory drugs outweighs the risk. I, like many others with arthritis and other inflammatory diseases, cannot take traditional NSAIDs due to stomach issues. Although Celebrex does not provide great relief to me, it is better than not taking anything. I, for one, will welcome an additional COX-2 inhibitor as an option for treatment.

Remicade Could be Good for Cholesterol

On the other side of the spectrum, a study published in the December, 2006 issue of The Journal of Rheumatology, has found that a Remicade side effect may reduce cardiovascular disease risk. The researches report that patients receiving treatment with Remicade experienced a "sustained increase" in HDL cholesterol.

HDL cholesterol is known as the "good" cholesterol because a high level of it seems to protect against heart attack.

Bits and Pieces: News

Ashley Treatment
To anyone who thought that the slippery slope argument in regard to the Ashley Treatment was baloney:
Two families are seeking the same treatment for their children (via The Gimp Parade).

Asthma Inhalers May Cost More
Beginning in 2008, all sales of CFC-filled albuterol asthma inhalers are banned. A generic version of the new formulations that use an environmentally friendly propellants may not be available immediately, making inhalers more expensive.

Another Attack of a Homeless Person in Florida
Two 10-year old boys and a 17-year old attacked a homeless man in Florida. The boys threw rocks at the man. The 17-year old punched him, knocking him to the ground. Then, one of the boys used parts of a concrete wall to hit the homeless man in the head.

TJ Maxx Credit Data Theft Incident
The TJ Maxx data theft incident is turning out to be the biggest ever with "at least 45.7 million credit and debit card numbers being stolen over a period of several years".

Iran
U.S. is demonstrating the largest show of force in the Persian Gulf since 2003.

The Undersecretary of State claims "We are not there to provoke any military conflict".

Secretary of Defense says U.S.
is not planning for a war with Iran.

The New Yorker reports on Pentagon plans for a possible attack on Iran:

Still, the Pentagon is continuing intensive planning for a possible bombing attack on Iran, a process that began last year, at the direction of the President. In recent months, the former intelligence official told me, a special planning group has been established in the offices of the Joint Chiefs of Staff, charged with creating a contingency bombing plan for Iran that can be implemented, upon orders from the President, within twenty-four hours.

Keroack resigns

Eric Keroack, an abstinence only advocate who was put in charge of the federal office that oversees reproductive rights funding, has resigned (via Feministing).

A quick search pulled up an article in the Boston Globe, and it looks like his resignation is the result of action being taken against his private practice by Medicaid.

The head of the federal office responsible for providing women with access to contraceptives and counseling to prevent pregnancy resigned unexpectedly yesterday after Medicaid officials took action against him in Massachusetts.

The Health and Human Services Department provided no details about the nature of the Massachusetts action that led to Dr. Eric Keroack's resignation.

This is good news. But I will reserve any celebration until a replacement is named. It's still possible that the Bush administration could find someone who is on par with Keroack or worse.

Update:
Keroack's deputy, Evelyn Kappeler, has been selected as an interim replacement. A Google search yields little information about Kappeler except that she is the deputy. One can only hope that the Bush administration doesn't pick someone worse to ultimately replace Keroack.

Remicade update

I haven't gone for my 4th Remicade infusion yet, but my psoriasis is clearing up quite nicely. I've had two particularly resistant spots on my fingers, and they're starting to fade away. Before long, I hope, people won't be able to notice it--thank God! It's really obnoxious to have to either hide the psoriasis or be prepared to have people comment on it or point it out (and then have to explain what psoriasis is and that it's not contagious. Check out the Psoriasis Foundation's FAQs on psoriasis for more information about psoriasis.). For several months, I was wearing band aids on two fingers to cover the lesions, but even that had people asking what I did to myself. Sometimes you just can't win.

So, even if the stuff wears off quickly for my joints, my skin is benefiting.

Random News

Panda fails to react to "Panda Porn".
Who knew there was such a thing?


You may have heard about the couple who fell off of a cruise ship last weekend. Both were rescued and appear to be in good condition. But, I find this funny (emphasis mine):

The 22-year-old man and 20-year-old woman had only minor injuries after falling into the Gulf of Mexico from a balcony on the Grand Princess ship, said Julie Benson, a spokeswoman for Princess Cruises. They have asked that the circumstances remain private and requested that no personal information be released.

From another news report:

[A Princess Cruises spokeswoman] said that the man, who was wearing no clothes when he was rescued, apparently took off his clothes in the water as a survival tactic.

The circumstances... I'm guessing the couple got a little crazy in their stateroom and fell off the balcony.

And, survival tactic? ummm... If I fell off of a cruise ship (with my clothes on), I don't think that taking of my clothes to stay aflot would be the first thing to come to mind.

Crossing fingers, toes and everything else I can

Short term stint with local university didn't happen. The out of town offer that I expect this week or next week had better be good. Otherwise, I'm not going to be happy.

TIA won't die

Total Information Awareness (TIA) was a Pentagon project that Congress pulled the plug on about 4 years ago. Bruce Schneier's blog points to a Wired article about TIA being reborn in Singapore.

For those who don't remember TIA, it was basically the database to rule them all. Every piece of data about every person combined with some alogrithms to mine the data for potential threats to the U.S. Trusting computer's to find meaningful relationships among data is a risky prospect. An even scarier thought is having a government organization like the Department of Homeland Security trusting a computer to do intelligence analysis for them and acting on the results.

Last year, reports came out that the National Security Agency took over TIA. And now Singapore has a prototype of the system, now called Risk Assessment and Horizon Scanning (RAHS). According to a consultant on the project, "Essentially it's a strategic tool that ties together every one of the agencies in a government into a large network that is constantly scanning the horizon looking for weak signals that point toward the possibility of a significant event that would have important implications for Singapore".

The article is an interesting read. It wouldn't surpise me if TIA makes a comeback in the U.S.

Idiot

A man escaped from a Texas minimum security prison last weekend.

The kicker: He was being considered for parole.

Why on earth would you break out of prison when you're being considered for parole? That's just stupid. Tack on a couple more years to that sentence, buddy.

Texas - We'll pay you $500 to have your baby...

A little late on this, but I've been trying to figure out how this whole proposal made sense. Obviously someone thought it was a good idea.

The proposed bill would pay women $500 for giving up their baby for adoption instead of having an abortion. The bill states that only abortion clinics would have the forms to apply for this money, and they would be required to inform women of the available money.

Aside from the issues raised at Feministing and Pandagon and Bitch PhD, you have to wonder how many women that were already considering adoption would go to an abortion clinic so they can get the $500. I'd say that's probably going to be rare, but it's still an issue. And anyway, who came up with $500? That definitely wouldn't cover pre-natal care. A far better proposal would be to offer free pre-natal care to any woman who chooses to carry to term if she cannot afford such care herself.

Busy, Anxious and Nervous

After the fiasco with the last job offer I received, I've been looking for other jobs. My current contract ends in 2 weeks. Time is running out. I'm being considered for a short-term teaching stint with a local university. That would be good, but they've delayed making a decision yet again.

In 2 weeks finances will get much more difficult if something doesn't come through. My husband is already stressed about it--among other things. I'm looking for something, I swear. I can't help it if no one is returning my calls or they're taking their time in getting an offer to me! I just wish he wouldn't take out his stress on me; I can only handle so much of the silent treatment.

I've been interviewing back down South. One interview started out by me being told I had the job, but I still haven't received any offer letter or other verbal offering. I really want the job, but I'm nervous that the offer won't be good enough for me to take (salary and relocation expenses are a concern). Then, I'll be stuck here with no job and an upset, frustrated and worried husband. Unfortunately, my skill set is fairly specific, so finding a good fit is very difficult.

Over the weekend we spent a lot of time working on our house and getting it ready should we end up moving. I painted trim, which is rather difficult to do when you're in pain (and now I'm regretting that decision). We cleaned and organized and straightened. The place looks pretty good. Still a lot to do should we put the house on the market, but it looks better than before.

If we do end up moving, I'm worried about getting a new rheumatologist. I really don't want to have to go through the diagnostic stage again. I know I'm not a standard case in any regard. I don't fit the "typical" psoriatic arthritis case, but I don't fit RA or AS either. As long as a new Dr. will continue my current treatments, I think I'll be ok. But, I'm worried that they'll doubt my diagnosis, and thus doubt the treatment and stop it.

I'm just really nervous. I'm a worry wart. This is one of the first times in my life that I've been in a situation like this (lots of unplanned stuff), and I don't know what I'm going to do if things don't just fall into place. I worry that if I don't get something soon, all hell will break loose. I just can't handle that right now.

Waiting

I feel like I'm Waiting for Godot. Normal day to day struggles continue, and all the while, I'm waiting for this unknown figure. Fatigue, pain and diversion from the mundane nature of life occupy time, but I'm still holding out hope for the arrival of something better.

Sometimes things don't go as planned. You hope for the best. Tomorrow, everything will be better. But life is not fair Pain continues. Stress mounts. Plans fall through. And I am left here, staring at empty hands and feeling the emptiness of losing hope.

Disability Carnival #11

Disability Carnival #11 is up at How to Wheelchair. Lots of good reads.

Catching Up

Last week was one of the worst ones yet pain-wise. Throw in on top of that all of the work-related stress, and it was a crazy week. On the plus side, I was able to get a disabled parking permit (a much easier process than I expected). I've used it a couple of times, and it has really made a difference. I actually went to the mall to pick up some make-up at Nordstrom instead of sending hubby to do it. I am planning on going to the grocery store/Wal-Mart all by myself tomorrow. Having that placard really made me realize just how much I wasn't doing because I didn't want to walk too much or wear myself out.

I had some job interviews out of town, and both went well. I got a few strange looks hobbling up the stairs at the office of one company. Maybe the other job falling through will work out for the best. Looks like I'll be getting at least one job offer in the next few days, maybe two offers. If either of them comes through, it means I can get out of this state and hopefully find a nice one-story house down South. No more stairs! No more long, cold (at least to me) winters.

Now, if only my rheumatologist will call me back. I'm hoping that something can be done for my hip, even if that means surgery. And, if I do need surgery, that I can get it done before I move and have a new job and new house and new stuff going on.

Phew.

TSA - a good experience for once

I've been flying quite a bit here lately. My last experience with TSA while using a cane was less than fantastic. As before, flying out of BWI was a hassle, but returning really was a different experience. It was obvious, from my experience there, that the Birmingham TSA has taken efforts to educate their officers on disabilities and take measures to ensure that the experience is as pleasant as possible.

At Birmingham International Airport in Birmingham, Alabama, when going to the main terminal (the only one used much, really), I presented my boarding pass and ID to the people checking it. They then escorted me to the security line reserved for pilots, flight attendants and airport employees. When I got there, I put my bags on the x-ray machine and waited until the last minute to put my cane up. To my surprise, the TSA officer told me to "wait just a second, honey." She turned around, and when she came back, she had a plastic cane for me to use. They let me take my time getting through the checkpoint, and were glad to assist me getting my bags off the x-ray machine and putting on my shoes.

TSA in Birmingham gets two thumbs up from me. A plastic cane is an easy addition to the security screening point, and it makes life so much easier for someone like me. I came out of security feeling more relaxed, in less pain, and most of all, respected.

I am writing a letter to TSA headquarters to encourage providing such service at all airports and commending the Birmingham airport TSA for their efforts.

Back to the drawing board

Due to issues with the company that I thought was going to be my new employer, I'm not taking the job. Turns out, they'll help, but only partially. I understand that they are under constraints, but they are refusing to answer some simple questions like:

Me: How many disabled parking spaces do you have in the in-building garage and how many are taken now?

Well, I don't know. A couple.

Me: When will a new space come available in the in-building garage? If you don't know specifically, can you give me a ballpark figure?

I don't really know. Maybe a few weeks. We don't really have any disabled people working here--those spaces are used for the pregnant women or people who've injured themselves. I can't imagine it will be more than a few weeks.

I figured that those would be easy questions to answer, or at least find the answers to. Apparently they don't care enough.

The hiring manager called me yesterday afternoon, probably because he's concerned that I might back out of accepting the offer (duh!). I reiterated my concerns about the parking and the position. His responses left much to be desired.

MGR: Parking here isn't cheap. But, there are several garages with spaces available about 5 blocks away.

Yes, but as I explained several times, I can't walk 5 blocks.

MGR: Well, I understand your issues. I've been there myself; I used crutches for a few weeks. But, I still walked.

Yes, but again, there is a difference. This may never get better; it may get worse.

MGR: ...

I'm not happy with the way things look. Even if they do work out the parking, the manager doesn't seem to get it. There's something to be said for educating people, but I don't want my life to be a living hell because my manager doesn't understand and/or won't accommodate my needs.

So, back to looking for a new job.

Not another allergy...

A new PF Chang's restaurant opened in the Baltimore yesterday. One of my work friends took me there for lunch for my birthday (Thanks!).

I really like PF Chang's every once in a while. I don't love the long wait that usually comes with eating there, but I truly enjoy some of their food. Unfortunately, something I ate yesterday caused an allergy episode. I have no idea if it was the lettuce wraps, the entrees we shared or the dessert that caused the reaction. This is not good. I didn't think that I had food allergies, at least, not the type that make my throat swell and give me hives. Luckily, I caught the symptoms early enough that benadryl and a couple of puffs of the albuterol inhaler were enough to get me through it.

So, this makes 2 new allergic reactions in less than a week.

I think my immune system hates me.

Terminology, Failure and the Patient

Fail
v. failed, fail·ing, fails
v. intr.

1. To prove deficient or lacking; perform ineffectively or inadequately: failed to fulfill their promises; failed in their attempt to reach the summit.


2. To be unsuccessful: an experiment that failed.
3. To receive an academic grade below the acceptable minimum.
4. To prove insufficient in quantity or duration; give out: The water supply failed during the drought.
5. To decline, as in strength or effectiveness: The light began to fail.
6. To cease functioning properly: The engine failed.
7. To give way or be made otherwise useless as a result of excessive strain: The rusted girders failed and caused the bridge to collapse.
8. To become bankrupt or insolvent: Their business failed during the last recession.

You hear it all too often in the realm of chronic illness and disability. You failed a medication--or a few or several. You failed to recover after physical therapy. You failed whatever treatment the medical establishment decided would work best for you.

As a newbie to the whole disability studies arena, I had never really thought about the implications of medical professionals using the language of failure in describing patients' responses. I didn't realize there was such a thing as a social and a medical model of disability. It never really sunk in just how much the usage of the word "failed" had impacted my persona, my hope and my outlook on the future.

I know that, as time passes, I will only get worse. There will be good times and bad. Not all standard treatments will work for me. I get that. I had pretty good hopes for my future and my ability to at least attempt to do some of the things I used to love like dance or play tennis. My hope and optimism have faded, and I believe much of it has to do with the manner in which doctors medical professionals talk to me.

Well, you've failed Enbrel/Plaqeunil/Azulfidine/standard medical treatments for inflammatory arthritis. You're starting to run out of options.

In reality, those treatments failed me. The important part of that conversation is the person, not the treatment. I have to remind myself that a treatment not working is not my fault. It just wasn't the right treatment option for me at that time. Much like the people first conventions of the social model of disability, the lack of response to a treatment should be phrased so as the fault does not lie with the person. The whole point of treatment is to improve the quality of life of the person; saying they failed defeats the purpose.

A new job... or not

I was very happy to get a job offer recently. It's a great opportunity to work for a well known international company. All sounded great, until I tried to find parking. Unfortunately, the office is in downtown Baltimore in an area with little parking.

When I went to interview there, the closest lot with available parking was not ADA compliant (5 stories high--no elevator and no accessible parking spaces). So, after trudging down 5 flights of stairs and walking 4 blocks to the office for my interview, I was exhausted and in a lot of pain. I didn't really consider this an issue though since the first parking garage said full except for those with monthly passes. Okay, so I just need a monthly pass.

Turns out, there's a 1 year waiting list for that parking garage (ADA compliant garage at that). So, I called HR and asked for their assistance with parking. Of course, I don't have a disabled parking permit right now, so they didn't want to help (I've been talking with my nurse and doctor about it though, and I'm going to get one to improve my quality of life--ie. not avoiding going places because I can't handle the long walk from the parking lot to the building). I assured them that I am in the process of getting the permit, so they acquiesced. They are now saying they cannot help me as the garages are city managed, and their internal parking garage is full.

Fantastic.

I already told my current employer that I would not be accepting a full time offer from them (I've been on a contract-to-hire contract for the past 5 months). I was counting on this position. And now, just because I cannot find accessible parking within my mobility limits, I will have to turn it down, and possibly be unemployed for a few months. Great. I'm thrilled.

On top of that, my husband to me to Morton's Steakhouse in Baltimore yesterday for my birthday. I absolutely love a good Grand Marnier souffle, and Morton's is the only place in town with them. Turns out, the outside entrance is not accessible. I had to hike up a flight of stairs to get inside (I didn't take my cane because I wasn't expecting to do much walking or climbing stairs). The accessible entrance was through the hotel entrance, a decent walk around the building. And then, that entrance brought you in to the back of the restaurant so you had to navigate the tables and aisles to get to the hostess stand. What a nightmare.

Since I started using a cane, I pay a lot more attention to the accessibility of places, and I'm really disappointed with Baltimore.

Disjointed

Suicidal family members who refuse treatment are an interesting challenge. When I say suicidal, I mean that this person has picked a date, method, clothes to wear, told family to plan to come take care of their personal effects during a certain time period and other things that do not bode well.

What do you do at this point? I only hope that we can break through and get some help before it's too late.

But, right now, I feel helpless.

It's about time.

My rheumatologist is finally doing diagnostic work on my hips. I was using my cane yesterday since, because of the snow and weather change, my hip decided it didn't want to move. Well, that was finally enough for the rheumatologist to examine it and order x-rays (after discovering that my right hip will not abduct more than 20 degrees). His comment: "Well, your range of motion is significantly diminished in the right". Uh yeah doc, that's what I've been trying to tell you for several months now.

He doesn't want to do a cortisone shot in the hip because it is more difficult than other joints. He wants to see the x-rays before he makes a call on what to do next. If the x-ray shows nothing, then it's MRI time. Fun stuff.

J, the infusion nurse, told me that I need to consider getting a disabled parking placard after discovering I haven't really gone anywhere in the past month because of pain. I'm thinking I will apply for one. I don't think I would use it all the time, but it would help me do things like grocery shopping. I only go grocery shopping on the way home from work, and then only if I can find a parking space close to the door.

Remicade #3

I had my third Remicade infusion yesterday. This time, the experience was not so good.

First off, it took 2 tries to get the IV in. Try #1 involved 15 minutes of digging around trying to find the vein (though, J, the infusion nurse, is the best wielder of a needle I've ever met, and even her digging around didn't hurt all that badly). I've had worse experiences, but I'm still not a fan.

I had an allergic reaction--not severe, but enough to warrant stopping the infusion of Remicade for a while and starting a benadryl IV drip. Turns out I get two of the less common reactions to the drug: headache and itchy skin/hives. Luckily, I reported the itchiness/tingling to the nurse soon enough that a major hives outbreak didn't happen.

Things I've learned from the experience:

• Always tell the infusion nurse anything that feels different or weird.


• Benadryl drips make me giggly. I'm sure the other people in the infusion room were getting annoyed with me after a while. I thought everything was funny.


• Benadryl drips make me really sleepy and barely able to walk. Hubby had to come get me and take me home. I'll have to go back this afternoon and pick up my car.


• Sleeping in strange positions during infusions is not good for the body. My neck still hurts from the strange way I was sleeping after the benadryl knocked me out.

So, from now on, I will have to pre-medicate with benadryl and tylenol before my infusions. Tylenol for the headache and benadryl for the itchiness. Bonus: oral benadryl doesn't really make me giggly, just sleepy. So, it's probably better for all the people I'll be sharing infusion room space with.

A Letter to Fox

Dear Writers for House,

Why is it that almost every episode of House I have seen recently deals with autoimmune diseases? And then, why is it that said autoimmune disease is either fatal or easily cured with steroids? I love House, primarily for the tragic flaws of one Gregory House, M.D. He's such an ass, but I like him anyway. I do still love a good medical mystery, but I prefer books and authors like Robin Cook for that. Where is the mystery in the medical mystery show when the possibilities for diagnosis include autoimmune disease.

While I realize that autoimmune diseases fall under the "mystery" category when it comes to medicine, can you please throw in something a little different every now and then. Or, perhaps you could portray the middle ground between "you're going to die" and "you'll be fine after some prednisone" with autoimmune diseases. When I, a computer scientist, know more about the diseases you present on your television program, that indicates to me that you did not do your research! Seriously, throw in a rare genetic disorder every now and then. Don't just fall back on autoimmune disease every time you run out of materials.

Regards,

Disgruntled Ladye

Now, where were the doctors like House when I was taking years to get diagnosed with an autoimmune disease? Autoimmune is one of the last areas (or was at the time) they check when it comes to diagnosis of a myriad of health complaints. Maybe TV will make autoimmune diseases a little more prevalent in the medical world? I won't hold my breath.

Procrastination

I keep trying to write this paper for work, but it just isn't happening. Though, ridiculous demands from unrealistic supervisors don't help.

Google is my friend for researching the topic, but it's also my downfall--helping me procrastinate.

It's due tomorrow morning. I'm so screwed.

Coping

To cope is to be able to carry on through the pain. I am not good at this. I don't really know if any of us are truly good at it.

Most days, I can get by. But, I'm tired of just getting by. I miss the ability to stay awake for a 16 hour stretch without needing a nap or insane amounts of caffeine. I miss being able to walk my dogs or go to the gym or climb the stairs.

The pain of daily life combined with the pain of loss is difficult. Being diagnosed with and accepting a lifelong deteriorating illness is much like losing a loved one. You grieve: denial, anger, bargaining, depression, acceptance. Sometimes, the cycle restarts itself after a setback or after hope raises its head only to be smacked down by reality shortly thereafter.

Again, I am caught in depression. I thought that I was existing pretty well on my own, but having the house to myself the past few days has really opened my eyes. I depend on others to take care of so many simple daily tasks, and now I realize that while I can do them myself, I end up in worse condition--exhausted, weak and in pain. I found myself having to ask for more assistance at work. I even needed to take an hour long break before I could walk to my car and drive myself home. I just sat there and pondered the situation. The longer I think about it, the more depressed I become. At the same time, I don't know how to break the cycle of depression. I know that it's not feasible to break the cycle of the disease. Remission in PA is rare, and even once the remission occurs, the existing damage to my joints will still cause a significant amount of pain. I try to hope for it, but that hope seems to be setting myself up for failure.

So, I compromise. I hope that things are no better and no worse than they are today. If tomorrow is better, hooray. If tomorrow is worse, it's much more bearable than the letdown of not getting better.

Drama, anxiety and health

*Warning* This is a whiny post. I just need to vent about the events of the past several days.

My health is definitely linked to my emotional state. I've been really anxious and nervous lately. A lot of things are going on related to my work (currently on a contract-to-hire, but another better offer came along. Long story short, the current employer told me it would be somewhere around 5 years before I get a promotion after I'm brought on full time. They made my decision to leave very easy!), and I've been so ridiculously stressed out. At least now I have an idea of what to expect and what's going on. Looks like I'll be starting the new job on April 2.

Unfortunately, when I'm stressed, I get physically ill. My mental health is directly related to my physical health. My back and neck are really tight, and my joints don't want to move. My appetite is all over the place--ravenous at times and non-existent at others.

So, now that the job situation is winding down somewhat (I still have to make sure that my current contract is not terminated before I'm ready to start the new position), I hope that the physical symptoms of my stress recede. Being able to walk more easily would be nice.

Anyway, I have my 3rd Remicade treatment tomorrow afternoon. I really hope the third time is the charm!

Weightless

How I would love to be weightless. When I was younger, we lived very close to one of NASA's facilities. My family and I would go there and see all the space travel related things. I always got the feeling that it was something I wanted to do. I wanted to see the great unknown beyond our world.

I remember being about 8 years old and being fascinated with space, the stars, the universe. I also remember that it was one of the few constants in my life, and in hindsight, that is probably why I always had my head pointed to the heavens.

We moved a lot when I was a kid. Think military moving. Then double the frequency. That was my childhood. New home, new school, new friends every 6, 9 or 12 months. The only constant things in my life were the stars I saw (my mother had taught me all the major constellations by the time I was 5 or so) and my parents. The only comfort I had in a new home in a faraway place was that I could look out my window and find Orion's Belt, the Big Dipper, the Little Dipper and other constellations.

I remember watching Challenger go up in flames when I was in elementary school (Kindergarten, I think--after that, I never saw another shuttle launch during school). It was such a tragedy, but I was fascinated by something so big that several people died and yet others would still want to do it. Sally Ride was my hero. When I started having health problems, I gave up on the dream of going to space. I thought about doing computer stuff for NASA but decided against it as my interests in computer science diverged from things that would be useful at NASA. Well, Stephen Hawking is giving hope for people with physical limitations and disabilities.

Hawking is now scheduled to go for a weightless airplane flight in April.

Go Stephen Go!

Adapting

Living in Maryland has come to mean being prepared for some crazy weather. From warmish to cold in just a day. While I relish the unseasonably warm days, that snap back to the cold is tough. For those of us with joint problems, the rapid changes are even more difficult to handle. I've been working on ways to handle my limitations. This topic has come up frequently on the Arthritis Foundation bulletin boards so I thought I'd share a few of my adaptations.

• Cane - I tried to make it to my 25th birthday without buying one out of spite, but the pain won out in the long run. It beats the butt-scoot any day.


• Gloves - keep hands warm (Raynaud's phenomenon is common with arthritis), some can provide extra support (therapeutic gloves). I even have a pair of fingerless gloves to use at work (especially in cold server rooms)


• Hand warmers - not just for camping!


• Flexi Leash Comfort - has a cushioned grip, and the medium size is big enough to fit most of my hand through, meaning I don't have to grip with my fingers. Walking the dog is much easier now.


• Using palms instead of fingers - Driving a stick shift becomes problematic when you can't grip the shifter. Learning to use the palm of my hand to change gears has saved me a lot of pain. Eventually I'll be getting a car with an automatic transmission.


• Comfy shoes - giving up high fashion for the more practical shoe. Walking a few blocks to work in high heels just isn't worth it. I still wear low heeled or dressy flat shoes with some of my suits, but I never walk far in them. For that I have shoes like these Merrell Mary Janes.


• Salad Shooter - Hubby got me a salad shooter for Valentine's Day this year (romantic, I know). I'd been wanting one for awhile so that I can cut vegetables and such when my hands won't cooperate. So far, it rocks. It also makes great slice potatoes for home-made potato chips.


• Rolling pin with upright handles - Another Valentine's Day gift from Hubby this year. I love to bake. I esepcially love to bake pies. To make pie crust, you have to roll out the dough. I kept having problems gripping the rolling pin and putting enough force onto it to flatten the dough. The new rolling pin makes it easier for me to do both.


• Cordless can opener - I'm not sure what brand I have, but if you have limited hand strength or flexibility, an electric can opener is a must. The cordless variety makes it even easier (unless you forget to recharge it).

I was not paid to review these items; they're just things that I've found help me out in my daily life. I wanted to share since a lot of people I've met with arthritis don't necessarily know what's out there to make their lives easier. Rheumatologists don't seem to discuss daily living assistance and leave you on your own to find out what works for you.

Tired

Airports, flights, family. I am tired--no, exhausted. Hobbling around the airport while toting a rolling suitcase proves much more tiresome than toting the suitcase alone.

Oh yeah, for once, TSA didn't try to confiscate my inhaler (in either city!). They did make me send my cane through the x-ray machine, but the TSA officer let me use her arm for support, so it wasn't too bad. The TSA officer was very nice and pleasant (that never happens!) and before having me send my cane through, she very respectfully asked if I could walk without the assistance of my cane.

I'm still not sure if they should have made me send the cane through and hobble through without it (ie. what the official rules are), but it wasn't worth the fight since I was already so tired. I suppose the alternative is to send the cane through, have them pass it back to me, then wand me. I should call TSA tomorrow to see what the "official" procedure is.

The good and the bad.

The Good:
The majority of my joints are doing better. This took some assessment since when one joint really hurts, it's easy to think that the new meds aren't working at all.

The Bad:
My right hip is still hurting, a lot. It feels like someone bludgeoned the joint and chipped off parts of the bone and is now sticking knives into it. I can handle pain, but the grinding sensation combined with the frequent popping is getting unbearable. I don't know if this is arthritis related or something else.

I went to the gym for the first time in about 1.5 months yesterday (my rheumatologist has been getting onto me for not going, especially since my weight loss stalled at 135 lbs). I felt pretty good just doing the elliptical trainer at a low intensity and speed. As soon as I got off the thing though, the pain came back much worse than it has been. ::kicks self::

Now, to find some form of cardio exercise that doesn't involve hips.
Ruled out: bike, elliptical, arc trainer, treadmill, stair climber.

I keep trying to find a personal trainer with experience working with PWDs, but I'm not having any luck. So, if anyone knows of resources, please let me know.

Frances Allen Receives Turing Award

The L.A. Times reports that the Association for Computing Machinery (ACM) has awarded the Turing Award to Frances Allen, the first women to be given the honor in the 40 year history of the award. (h/t Broadsheet).

The Assn. for Computing Machinery has granted the A.M. Turing Award for technical merit to no more than a few people each year since 1966. Winners include Vinton Cerf and Robert Kahn, who helped create the underpinnings of the Internet; Marvin Minsky, an artificial intelligence guru; and Douglas Engelbart, inventor of the modern computer mouse.

As one Broadsheet reader pointed out, it seems strange that Grace Murray Hopper did not receive this award (especially since she received just about every other award under the sun, including "Man of the Year" from the Data Processing Management Association in 1969).

I posted my thoughts in the Letters section on Broadsheet, but I want to expand here. The other letters in response to the Broadsheet piece are an interesting look into women in the field.

Presenting the award to a woman is a great start for the ACM, but it's just that, a start. The general professional organizations for the computer industry have attempted to attract and retain women in computing, but their efforts have often been too little too late. Other organizations like Women in Technology International (WITI) and Association for Women in Computing for women in the field have sprung up, but their worth varies depending on location. But, these women-specific organizations seem to be worth much more than anything ACM or IEEE have done.

On top of that, the number of women pursuing computer science degrees at the undergraduate level has actually declined. At higher levels (MS, PhD), the numbers are far more dismal.

One anonymous commentor on Broadsheet contends that no women are core developers in large software projects. I don't believe this is true. For a fact, I know some in the defense industry doing precisely that, but, they will never be recognized (at least not any time soon) because their work is classified or considered sensitive. Also consider the fact that many work environments for large scale software aren't pleasant. As a woman, you have to prove yourself technically competent before you can even begin to do anything important. Having to constantly prove yourself is a hassle and it's not fair when a new man comes into the office and is automatically taken more seiously and does not have a huge uphill battle to prove his competence.


And a personal anecdote to underscore the experiences of women in computing, for good measure.

About 5 years ago, during college, I was participating in the ACM's collegiate programming competition (yes, I'm a geek). This is a team competition, and it's a good thing to have on your resume/CV for grad school and careers. The unusual thing that year was that my team consisted entirely of women (myself, a CS major; L, a CS and Physics major; and M, a CS and Math major). We did well, placing in the top 10 in our division; however, our experience was less than pleasant. When walking around the competition, we were stared at, leered at. We were ingored, shunned (not terribly surprising since most of the folks at these competitions have limited social skills, particularly around the opposite sex). We were made fun of: "How are those girls going to handle this. What a joke." And best of all, when we went up to receive our award, we were catcalled and groped. When we got to the stage, the woman presenting the award regarded us as freaks and commented, "Well, I can't believe you girls placed." The following year, with a team of 2 women and one man, we won first place in our division. Of course, many present commented the man was the one who did all the work because those two girls couldn't possibly be good. At least I had a supportive woman professor as my team sponsor and mentor. She'd been there, done that, and had good advice and support for the female undergrads.