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.