Saturday, May 31, 2008

Its been too long...

It has been far too long since I have posted and a lot has happened.
Finals and heading out to Jamaica being the main two.
During finals my joints were pretty bad because of the amount of sitting I had to do in order to study. Hips are still the worst.
On the 25th I headed out for my first trip outside the country (besides Canada, which doesn't count) to study in Jamaica for 5 weeks. The plane ride was short (about 4 hours or so) but I made sure to get an aisle seat in case I had to get up to stretch,or creak and crack my bones. While they did start to hurt when standing around at the airport (sitting and standing still for lengths of time are the worst), they have not been all that bad thus far. Maybe its the Jamaican breeze.
The roads and beaches here are rocky and I was afraid my joints would be awful but, even with only wearing my inserts some of the time, my joints have not been all that bad (though they are definitely worse after a nights of drinking rum, which have been happening a lot).

We are going to a mineral bath close to Yallahs (where I am staying) today that is supposed to have some healing power when it comes to joint pain. It's mostly "bush medicine" beliefs, but I will give anytjing a shot. I will write more on that later.

Sunday, May 4, 2008

So, Friday night we went out to our favorite Vegan Chinese joint (Kingdom of Vegetarians) to celebrate our friend Mia and my boyfriend's birthdays. We then proceeded to Bob and Barbara's, a local bar that has a great three piece jazz band on the weekends.
Since I hadn't had a drop of alcohol in quite a while I decided to indulge in a few vodka and cranberry juices.
Bad idea.
I knew going into the night that if I decided to drink I would know for sure about the drinking arthritis connection by morning. While I had a great time that night, by morning, it was as though I forgot how bad my hips and elbows could hurt.
I suppose it was worth it to know for sure (well at least have a better idea) that alcohol does cause arthritis flare ups. Sad but true.
Now I know and knowledge is power. If I do decide to drink more than just a glass of red wine in the future I better be prepared to waste a day lounging around, hungover with joint pain.

Eh,who needs the calories from alcohol anyway?Right?

Tuesday, April 29, 2008

I remember when rock was young...

Okay, so it's been awhile since my last post but this could be taken as a good sign.

I haven't had a really bad arthritis day for a couple of weeks (which is way more exciting to me than I wish to admit). Mainly I have been tackling killer allergies (that I am pretty sure started while I was sick a couple of weeks ago creating a lot of confusion as to why I was still coughing 16 days later).

I have been alcohol and coffee free this whole time and it is quite possible that the diet could be paying off. I, of course, have my reservations seeing as arthritis is really unpredictable and just because I am having a good couple of weeks now, doesn't mean a flare up isn't right around the corner.

Anyhow, I have to admit that when I was sick I did not leave my bed for about three days.
This made my computer my only form of entertainment. After exhausting almost every other tolerable possibility for online television I eventually decided to watch the ENTIRE SEASON of the celebrity apprentice.
I have never watched the actual Apprentice before, but I have to admit that having D list celebrities fight to win charity money was mildly entertaining. During the show these "celebrities" fight to make the most cash marketing all sorts of crappy products from subway sandwiches to Kodak printers. Perhaps my brain was numbing from the whole situation but when the celebs started to pitch the "Crocs" (those HIDEOUS clog like shoes) and their new Eco marketing ploy, I actually became interested in the product. A reader had suggested them to me for my ailing feet on a previous entry, and after learning about the company a little I have been thinking about investing in a pair before I go to Jamaica.
I refuse to get the big clog ones with the holes in them, but they make a pretty nice looking sandal that seems comfy cozy. I almost bought a pair when I was at the mall last weekend but I chickened out at the last minute. If I finally bite the bullet, and get a pair, I will be sure to write about it and let you know if they are as comfortable as people say.

Sunday, April 20, 2008

Happy Feet...

So, despite my allowance of occasional tomato products, my joints have been incredibly happy this week! (Though I am still harboring a nasty cold) I even managed to wear flip flops for an entire day with no repercussions!!!

I am liking this diet so far!

Wednesday, April 16, 2008

Tomatoes and Tabasco sauce...

Okay, so it's been a couple of days since I have been trying this new arthritis diet and I have already screwed up twice. How predictable.
I have a habit of reaching for hot sauce (Tabasco habenero sauce mmmm) and putting it on everything, which is no good for my list of foods to stay away from (along with hot and sweet peppers and pimentos, too.). Another area of struggle has been tomatoes. I have drastically cut my tomato intake, but it is so hard to eat a falafel sandwich minus my favorite red fruit disguised as a veggie. Yuck.
Cutting out coffee has been fine thus far, but I think this is mainly because I have been feeling sick on and off for a week now and tea is more soothing to my sore throat.

Well that is all for now, I am incredibly busy this week with school, but I will update soon (possibly with something a little more interesting).

Monday, April 14, 2008

I have measured out my life with coffee spoons.

A few days ago blogger Pristeen commented on removing nightshades, alcohol and coffee from my diet, and while I had read up on this natural way of preventing arthritis flare ups before, I would never have guessed that the coffee would be the hardest for me to remove. Ever since she left the comment I found myself coming up with excuse after excuse as to why coffee wasn't that bad, however, some research behind the issue made it more clear that I do need to make some diet changes. It seems that there is research out there that excessive coffee drinkers may be at more risk of developing RA.

Up until about 5 months ago I never even drank coffee, but, as I am told by fellow graduate students, coffee becomes a requirement to get through grad school.
I take my coffee black so as to not have to worry about soy milk or be tempted by refined sugar. A couple of months ago I also started a little game between my boyfriend and I, that used coffee places as a fun and cheap couples activity. He and I are complete opposites from the music we listen to (I enjoy mostly anything from grunge to alt. rock, reggae, and old school hip hop, he enjoys , fairly exclusively, underground punk and reggae) our degrees (Myself, going for my BA in English and M. Ed. in Secondary Ed. and him with his completed B.A. in Biology and soon to be completed degree in Information Science and Technology), so we work hard so find things that we both enjoy. While it is not that difficult because we both enjoy being outdoors, and going out for drinks, and of course we both love our black coffee, many times we are broke and not able to go out.
That's when I started taping names of Philadelphia coffee places to our dartboard. Each week we throw darts to decide where we'll go, it's just the two of us, and we only buy basic coffee. Cheap and easy (that's what she said), but fun and new.

Now I know what you are thinking... They don't have to stop going to coffee shops, she can just get tea or something, can't she? Well, I wasn't sure, so once again Google is my saving grace in letting me know that not only can I continue our fun adventures, but Green Tea may actually help prevent arthritis. While it is a little late for any prevention, it definitely could not hurt to start a daily regiment of some deliciously healthy tea.

Alright so now that I have typed it I guess I have to do it; no coffee, no wine, no beer, no potatoes, and plenty of green tea. Wish me luck, I'll need it.

Saturday, April 12, 2008

Night Sweats and School Projects...

Yesterday was awful, today seems to be okay thus far (although I have yet to eat anything since 3pm yesterday). Last night I kept waking up from night sweats, which I am hoping means whatever fever I may have had was breaking. Plllleeeease let this be the last of this cold.

To top it off, it is the end of the semester, and I have one large project due after another in school. I am going to walk over to Temple's Center City campus in hopes to seclude myself from any distractions (but since I am like a cat ::ooo shiny objects!::) this probably won't work out so well.
Anyhow, the good news is my joints stopped hurting, and I have decided to go back onto the Meloxicam my Doctor prescribed for me a few months ago. When he prescribed it, I only gave it a month, and although I still had pain during that month, I didn't have pain like I had been experiencing these last few days. I also have to make sure this doesn't happen when I get to Jamaica, so being on some kind of medication would be smart.

Okay, while I may post a little more later, I am off now to do a project on Animal Language (not the worst topic in the world). Let's hope I can stay focused and my hips stay happy.

Friday, April 11, 2008

Not so fast...

So I woke up today and my stomach decided to turn my insides out. How lovely.
And the sickness saga continues.

Thursday, April 10, 2008

"Grown-up life is like eating speed or flying a plane. It's too bright."

I just sat in the tub for 45 glorious, weightless, minutes.

It's crazy how the warmth of the water clings to my joints, and suddenly,

I am feeling alright.
(hopefully this is not a temporary state of euphoria)

Maybe I will get a chance to enjoy some of this day after all.

"It will be okay. Give yourself a break."

I have anxiety issues.
I hate being late, I hate standardized tests, and I hate it when people get the wrong impression of me. I go to Temple University, and whenever I am absent due to sickness (like today) I tend to sit in bed and think of all the work that is piling up (something I am sure does not help my recovery process).
Typically, it will take me a night of NyQuil induced sleep and a few hours of laying around in the morning to start feeling like myself. Not today. I have the same headache I've had for a few days now and my bones are revolting against me.
I know PA has something to do with the immune system, but isn't my immune system supposed to work overtime or something? Then why do I keep getting sick a couple of times each season? Oh, silly,wishful, thinking.
Of course there is no specific PA info out there on this matter, but for those with RA (and assuming it's the same with PA, as so many studies do)

"Your immune system is responsible for keeping your body healthy; it attacks any invading cells or bacteria to keep you from getting sick. People with rheumatoid arthritis, however, seem to have a dysfunctional immune system. It attacks healthy cells throughout the tissue and joints, causing inflammation "

I therefore assume this can of course, make it easier for RA patients to get sick.

Now I am wondering why I do not get sick more often? As I said I get sick maybe 1 or 2 times a season, and it never lasts more than a few days (except for this doozy of a cold I am dealing with now).

I have a great (vegan) diet, mostly fresh fruits, veggies, soy milk, grape nuts, black coffee (not so great), and tofu. I also make sure I am on the up and up with my Vitamin C daily, so perhaps I am doing well for someone with PA?
Maybe I will bring this up to my Doctor at my next appointment (which I still have to make, tsk, tsk).

Tuesday, April 8, 2008

Little men hammering in my head again...

Waking up with a headache is the pits.
I am not sure if, or how, it could be associated with my PA (probably through my back/neck pain?) but there is a definite correlation between a "bad sleep" night with my bones, and then getting a pounding headache in the morning. Of course with arthritis the bone pain is at its worst when you wake up (you'd think after a night of resting your bones would be happy, but no) and so it's a double whammy in the morning when you don't want to move or open your eyes because it all hurts too much. Fortunately I know that if I get up and move around the bone pain will lessen (or at least the stiffness will), and as for the headache, hopefully, my good old friend Mr. Tylenol will fix me right up.
::sigh:: when a day starts out like this one, you spend every hour waiting for it to be over...

Sunday, April 6, 2008

Pity little thing.

Today at work I stumbled upon this great little article and discussion thread...

The author asks us sufferers the following...

"Life changes when you get arthritis. Whatever your life was like before arthritis, it's undeniable that your illness becomes a big factor in all you'll do going forward. Yes, it's a factor, but how much of a factor? Does each patient decide that for himself or herself -- or does arthritis decide? Think about it."

For me (as someone who has only recently been dealing with this disease) it is hard to say how much of a factor arthritis plays in my life.

I mean most people I see from day-to-day have no idea I have PA, but to be completely honest, I think this is because I don't want them to know. So therefore PA is restricting me in the aspect of not being completely honest about myself, but is that level of honesty neccesary? Should I just walk up to people and say "Hi my name is Kristy and I have Psoriatic Arthritis?" No. Not at all. It is difficult because I do not want to know how people will react (will they treat me differently?), but mostly I just fear that I will starting living my life like PA defines me.

It's a complete paradox; "Do not judge me for fear that I may judge myself", and maybe I do, I don't feel ashamed, and I certainly do not use PA as an excuse to not live life (hence past adventures like skydiving and future endeavors like hiking in Jamaica). I have an active lifestyle, and high self-esteem, but this whole "having a disease" thing just seems so strange to me. It is as though I still do not believe that the daily pain I have could possibly be arthritis. That, and the fact that I am not comfortable with "help"; something I am sure will have to change as I get older. Along the same lines, the thought that anyone might pity me makes me feel physically ill. I am independent, and I have always liked that about myself, but what do I do when I am being forced to face the reality that I might need help in the future?

Maybe this blog will help me figure it all out, but, for now, all I am certain of is that just thinking about these types of questions is a good thing.

...and when the morning comes

So I woke up today with my ankles throbbing. While this is not uncommon, I couldn't help but wonder if there was a correlation between the three pints of beer I had last night and this particular flare up. The Internet proved to be of little help in my inquiry. Apparently there has not been a lot of research of the effects of drinking and those who suffer from PA. Although this site did mention something I found interesting...

"Alcohol appears to affect psoriasis in men more strongly than in women. One study found that heavy drinking actually lowered treatment response in men. Other studies have shown that men with psoriasis drink more than men without, that there is a significantly higher incidence of psoriasis in alcoholics, and that abstinence can improve the severity of the disease.", the site then goes on to say that in men, abstinence from alcohol seems to show significant improvement in psoriasis. I found it interesting that men tend to drink more with psoriasis than other men who do not, is it because of self esteem or depression? Or is there something genetic ? Maybe alcoholics are more likely to have psoriasis? Very interesting indeed, I will certainly update here if I find out anymore on this topic.

Although I am still unclear as to whether alcohol is the cause of my joint pain, and I am feeling a tad bit lazy to look into liver and kidney disease this morning, my psoriasis has kicked in for entirely different reasons than alcohol.

Oh Sundays! My dreaded cleaning days.
While I try to always wear gloves when I am cleaning, I ALWAYS ,ALWAYS, get a flare up of psoriasis. I guess it's pretty difficult to not get any bit of cleaner on my hands, and I tend to wash them more often on cleaning days. But,like I stated before, my Psoriasis is a really not that bad, just sorta ugly and a little painful, and it does not occur often. I am very lucky and grateful for that. But still, it does not feel good to have to be self conscious about something as "silly" as the skin on your fingers when hanging out with people. But, such is life,

at least, life with PA.

Saturday, April 5, 2008

Saturday night burns a redness on my face...

Those of us who take NSAIDs for more than just the occasional headache are aware of the risks of taking them while drinking. Depending on the drug of choice, you can risk ulcers, kidney, and/or liver problems. As a 24 year-old girl in her prime, I often choose to ignore this, or rather put it aside. This act of torture adds an extra sense of worry to my Sunday morning hangovers. That is until I ask myself, just how bad could a few drinks be?

For me, plans are not often made until at least 9pm on Saturday nights, and those of us with arthritis know that our old bones start to ache way before that on any given day. So what's a girl to do?

Not drink. Yes. Easy answer,I suppose, and although I have cut down quite a bit in the past couple of years, I do occasionally indulge myself in a few drinks now and again (knowing I probably just popped a pill a couple of hours before).

Well, here I am again with the same Saturday night dilemma. I am off again, and I have not decided yet whether I will let that Tylenol haunt me into not drinking. I suppose I will let you know tomorrow when I inevitably drown myself in Internet literature concerning liver disease. Expect a full briefing. Until then... Cheers!

Friday, April 4, 2008

What Condition my Condition was in...

I spent a good part of today reading up on arthritis, and stumbled up an article that discussed the A Rising Therapeutic Option For Psoriatic Arthritis And RA .

It is in reference to adalimumab (commonly known as Humira) used to treat PA and RA. My Dr. suggested this treatment as the next step in my pain management, however, I am a bit worried about having to frequently inject medicine into my body. The article did make it sound as though the benefits would be worth getting over my fear of injections and it brings up the always convincing point that "early, aggressive treatment of RA is critical to delaying or avoiding joint destruction and maintaining function. Accordingly, he says adalimumab’s expanded indication for the first-line treatment of RA is a key milestone."

While this is exciting,the cost and side effects sound pretty unpleasant "Dr. Mease notes that injections of adalimumab can be expensive. According to the manufacturer of adalimumab, potential side effects may include headaches, rashes, injection site reactions and upper respiratory and sinus infections." My Dr. also noted that on this medication it very very important to be aware of any and all infections you may have, and if you have signs of an infection (fever etc.) then you should not take the meds for that cycle. WebMd explains this by saying, "This medication can decrease your immune system's ability to fight infections. Though unlikely, this drug may slightly increase your risk of developing serious, possibly fatal, infections. This risk is higher if you are also taking other drugs to suppress the immune system such as cyclosporine."

While I may wait to start Humira for the time being, there are definitely PA and RA sufferers out there who would love to be on this drug, but according to many forums and message boards I have been frequenting, they are not able to afford it. Like many people in the U.S. ,many people with PA are struggling with insurance companies to get this drug covered, and of course there are the great many people who don't have health insurance (who aren't able to work because of the joint pain) and disability checks fail to cover even a small percentage of this costly drug.

It is absolutely depressing and vexing to read the stories of these people. They are crying out in agony knowing there is something out there to help with the pain, but they are not able to obtain that help.
It all comes down to our capitalistic agendas and how we as Americans are not willing to stand up to big business (which, believe you me, health insurance companies are some of the BIGGEST). I can honestly say that I am fearful of a day that I might not be insured (like my significant other who is a student, but too old to be covered under a parents insurance and too broke to buy his own policy), or even worse, that I am covered and my insurance claims my PA had preexisting conditions. Denied.
My fears are not just paranoia; this happens to someone, somewhere, every single day.

Reading these stories reinforces my belief that everyone of these people that are suffering (including myself), and anyone who cares about the unjust manner in which our health care system conducts itself, needs to educate themselves of the policies in the up-coming election, register to vote, and help to change this ridiculous and outdated system.

Thursday, April 3, 2008

Today was a good day...

The sun was shining (at least until about 15 minutes ago), the birds are singing, and I managed to wear cute wedge shoes all day (7 hours!) with minimal discomfort (at least none caused by PA, a little caused by the normal "new shoe" breaking in). I really do love those damned inserts. Right now I am probably at a 3 on the pain scale, with a bit in my back and knees. All in all it has been a good day for me.

In other PA news today, I visited a PA forum that user "Cajunz" so kindly suggested, and of course the first post I noticed was labeled "too young?". Unsurprisingly, a 28 year-old women suspects she might has arthritis in her fingers and her peers just find it funny, because she is too young to have arthritis. Now I can excuse some people for not realizing that arthritis affects people of all ages, because all they have known of the disease is grandmothers and grandfathers who complain about their creaks and swells. This is understandable, because like most things today, the media plays this image up. What is frustrating to me is the number of doctors who judge strictly based on age. I went through 3 rheumatologists, a podiatrist, and two general practitioners before I found a doctor who was willing to say "hey, this is obvious, you have every sign of having arthritis", my pain was getting so severe that I was not able to sleep at night because my hips were throbbing. The first rheumatologist simply tugged and pulled at my joints, and because they were pretty flexible, simply said I had loose ligaments and prescribed me pain meds. Since I was completely against being on pain killers for the rest of my life(and pretty much still am), and the fact that what he prescribed me was not working (I can not recall the name or dosage), I pursued another specialist. The next guy told me that if I was against the NSAIDs then the alternative was to go to physical therapy to try and build up my muscles around the joints, this proved to be fairly useless because at the time I was already very fir and going to the gym 4 to 5 times a week, so the therapist just told me what exercises to focus on. Soon after I changed jobs and ,therefore, insurance companies, and had to seek another Dr. when the pain started to become unbearable again. The next Doc thought I might have arthritis and prescribed me to take 1000mg of naproxen EVERYDAY, I thought I would do so just to humor the guy, since he seemed at least somewhat interested in my pain. After about 3 weeks my stomach revolted. It was not a pretty sight to see, let me tell you. I stopped taking the pills, and at this time I had to change insurance companies (again). The next guy (and current favorite, although somewhat of a religious zealot) was so responsive, and with help from my new general practitioner, finally came up with my diagnosis. PA!
Currently I am only taking pain meds when I need them (something he is unaware of), and I am probably going to have to pursue stronger measures after I come back form Jamaica in July.
I am still frustrated that no one seems to be working on getting rid of or stopping PA, just helping the pain, but I am just so relieved that there is someone out there who believes my pain is real. It sounds dramatic, but there are times when I think even the closest people to me think I am exaggerating when I talk about my pain.

I still get that "oh sure" look when I mention my arthritis to someone, and sometimes I feel as if I am being judged, as though being 15 lbs overweight caused my arthritis, which it hasn't. Perhaps I am being to hard on people when I say they don't understand, or perhaps it's hard for them to imagine my pain when they see me walking, running, and just doing "normal" things day to day.
I suppose everyone has an aspect in their lives in which they feel no one can quite understand. Don't they?

Wednesday, April 2, 2008

A vegan diet may help...

To read more about my vegan diet, check out my other blog

So, I am a vegetarian, and therefore quite excited to read about the new Swedish study claiming that a vegan diet, paired with a gluten-free diet, might be helpful for reducing heart attacks and strokes in Rheumatoid Arthritis patients. I am taking this as good news because of the similarities doctors always compare with PA. I am already halfway there, and perhaps I should try the gluten-free thing (although I have tried a few gluten-free items in the past, and they were not very tasty). Even if this only pertains to RA sufferers, I am glad to hear researchers are thinking outside the box when it comes to arthritis. Here is a link to the article...

Yesterday (the day I decided to start this blog) I was at about a 7 on a 1-10 pain scale, and by night time I was up to an 8 (9 and 10 being the point where I start cursing god and wondering if I will be able to stand walking in another 20 years). The worst part was that it's completely my fault. You see, about 6 years ago my knee pain started, and I assumed it was a sports injury. My right knee hurt the worst, yet I never went to the doctor. About 2 years later I was experiencing ridiculous pain in both knees and feet. I went to a podiatrist and he fixed me up with an expensive pair of orthopedic inserts, and banned me from ever wearing cute strappy sandals ever again. It was a sad day, but I realized soon enough (the next time I was tempted to wear a pair of flip flops in the middle of the summer and traipse downtown) that his advice was totally warranted, my feet hurt like CRAZY and my knees were throbbing, all because I didn't wear those stupid inserts.
Well, sometimes I like to test my bones out (I am beginning to question my sanity) and not wear them, and yesterday was one of those days. What is worse, is that I am spending a month in Jamaica this summer to study, and while I am scared of the hikes we will be taking I know I can handle the pain as a trade-off for the experience (I am sure I will talk more about this in upcoming blogs), what I am unsure about is my temptation to throw on a pair of flip flops and head to the beach like every other "normal" person on the island. I suppose we'll have to see what I decide to do, but for now, I am wearing those suckers every moment a shoe even touches my feet, because I could use just a couple less "8" days in my life.

...just starting to deal

I am 24 years old and I have Psoriatic Arthritis.

I do not talk about my disease (and calling it a disease, really, my disease, is a huge step for me), and when I do I find most people do not know or understand what it is. This does not surprise me because it is not a common disease, and it is very very uncommon for someone my age to have it. I should first introduce what Psoriatic Arthritis is;

"Psoriatic arthritis is an inflammatory condition that affects the joints of children and adults with psoriasis. Psoriasis is a skin condition that causes patches of thick, red skin to form on certain areas of your body. Not everyone with psoriasis develops psoriatic arthritis, but everyone with psoriatic arthritis has psoriasis. Like rheumatoid arthritis, it results when the body's immune system, which normally exists to protect against invaders, goes into overdrive and causes excessive inflammation. Most people develop the skin signs of psoriasis first and are later diagnosed with psoriatic arthritis. Joint pain in people with psoriatic arthritis can range from mild to severe. Many experience changing signs and symptoms as the disease continues. Many definitions of psoriatic arthritis exist, which makes it hard to estimate how many people have the disease. About 10 percent to 15 percent of people with psoriasis eventually develop psoriatic arthritis. While no cure for psoriatic arthritis exists, doctors work to control your signs and symptoms and prevent damage to your joints."

Alright, so, now that we have that vague definition out there, I would like to explain a few things about my PA (which is commonly used as shorthand for the disease). I am lucky. My psoriasis is very very mild. My hands get it the worst, although when I was younger I had it all over my arms and my knees. Most people do not even notice my hands and there are times when I have no redness or dry skin at all. My PA is severe in the arthritis aspect.
I have joint pain daily, mainly concentrated in my hips, knees and ankles, while occasionally occurring in my hands, wrists, feet, toes, and possibly my back (the jury is still out on the cause of my back pain). I have been on forums for PA and I know that I am lucky to not have as much pain as a lot of PA sufferers out there. I walk, a lot, I am able to type this blog with little discomfort, and I do not have to worry about excruciating pain from the driest of dry skin. I am, however, very young, and because there is no cure for PA, I am very worried about my future. It is for that reason, and also in the hope that this blog may attract someone like me, that I decided to talk about this topic. I also want to make it clear that although I am a vegan and I have Psoriatic Arthritis, neither of them have anything to do with eachother (in otherwords; PA is not caused by having a vegan or vegetarian diet).