Sunday, March 30, 2008
LUPUS ERYTHEMATOSUS AND RHEUMATOID ARTHRITIS
Not all of the following reactions have been observed with every 4-aminoquinoline compound during long-term therapy, but they have been reported with one or more and should be borne in mind when drugs of this class are administered. Adverse effects with different compounds vary in type and frequency.
Gastrointestinal Reactions: Anorexia, nausea, vomiting, diarrhea, and abdominal cramps. Isolated cases of abnormal liver function and fulminant hepatic failure.
Miscellaneous Reactions: Weight loss, lassitude, exacerbation or precipitation of porphyria and nonlight-sensitive psoriasis.
There are a whole bunch more that I left out ... many are effecting me ..however ... the important one ... loss of appetite. Food ...has lost all flavor.
Like with the Topomax where soda no longer has any fizz ..so therefore, has lost any and all appeal ... food, has no flavor, and has even less appeal than normal for me.
This, cannot be a good thing.
I go to eat, and take two or three bites and feel remarkably full. I know exactly what is meant by salt loosing it's savor!
Sweet has no sweet and salt is dull. Coffee tastes like water ...
For someone who has an eating disorder and has to discipline themselves to eat, this ..could turn into a real issue.
I've looked back over the last 5 days and noted I've already 'misplaced' lunch in my daily food plan.
I am not sure what to do at this point. I see my therapist on Tuesday and will let my psychiatrist know while I'm there in the clinic.
Friday, March 28, 2008
March 1992 ... I was unable to dress myself, I could not chew scrambled eggs, I could not get up from a chair without help, and I could not hold my head up. Breathing was something to be concentrated on. Swallowing? Well, that was a trick. There was two of everything no matter where I looked, and on many occasions, there could be as many as five.
Walking was a trick, and I could wind up on the floor without warning.
As often as not, I could not get a fork from a plate to my mouth.
I had a 2 and a half month old baby, picking him up ...impossible. Holding his 4 oz bottle ..too heavy, I'd drop it. I was as likely to drop it as not. To hold my son, I had to have help getting settled into the couch where my arms were supported on both sides, then they placed him in my arms. Then someone else put the bottle in his mouth, and place something under it to support it. I could not burp him, bathe him, nor change his diaper.
The second Tuesday in March, I fell and injured my shoulder, that night they took me to the emergency room. To get me down the stairs, my mother and husband took the couch cushions and let me fall onto the porch, then sit on each step as I slid down each stair. They then helped me to stand up, and get me into the car. When we got the the ER, I could not get out, someone from the ER had to come lift me out of the car.
In the ER ... 2 Residents from the OU College of Medicine were called down to see me. One, a Dr. El Rehab (Knight in Shining Armor 1) and the other, I wish I could remember his name, I think it was Dr. Fisher (Knight in Shining Armor 2), both examined me independent of each other ... came together after examining me, looked at each other and jointly said "Myasthenia Gravis"
They admitted me for testing and beginning treatment. I'd not understood the word they'd used ..and was scared to death. My husband made a crack about "it's all Greek to me" when he was talking to my mom. We still laugh about that comment.
Twenty four hours later, an EMG, full evoked potentials, tensilon test later .... I met my new neurologist Dr. M (forever hero and political talk buddy) . I was told I had a disease called Myasthenia Gravis. "mya what?"
They explained to me that it was an autoimmune disease that was attacking my muscles, including the breathing and swallowing muscles. The difficulty with it, is that medications and surgeries ... can really complicate the disease ... so, with this disease ...medications and surgeries would only be given if absolutely necessary.
OK ..fine! who wants to take medications and have surgery anyway??!?!?
The next sentence they tell me ... I'm going to be taking Mestinon .. Prednisone and Imuran ... and ... I need to have my thymus gland removed.
They then go over the risks of the prednisone and the Imuran ... hey! these are not light weight drugs here!! These are serious stuffs!!!
Then, I timidly asked "where is the thymus?"
"it's located right behind the breast bone, it's that thing that most people think is the heart"
OK ..so you get it out how?
We cut open your chest ...and my ears started to ring and I don't remember the rest of the conversation ....
In the following 16 years ... I expected that I'd not have many medications or surgeries ..after all ..they said that it'd only be given if absolutely necessary and surgeries are only done if NECESSARY ...
however ... here I am .. 16 year later ... and as of this week, with the new addition of Plaquenil .. on 24 medications ...and having had 15 surgeries with my orthopod wanting to do another on my shoulder.
OK ...so ... yeah, all of my meds are necessary ... every few months one of my docs go through all of them desperately trying to wean some out, and they can't ...
All of my surgeries (well, maybe not one of them) have been absolutely necessary ...
but still ... 16 years ago, I expected to have a life of few meds, no surgeries ...
instead I got extended meds and extended surgeries ...
Thursday, March 13, 2008
My hair's a wreck
My feet get dirty and my skin burns in the sun
My lips, they bleed
But I still sing my songs
Takes me a minute to admit it when I'm wrong
Pretty is as pretty does, but pretty's not my thing...
This is what you get
This is who I am
Take me now or leave me
Any way you can
Sometimes I trip and fall
But I know where I stand
If you're thinking about changing my direction,
Don't mess with imperfection
My back is weak
But my will is true
Got good intentions but I never follow through
And I say too much
Don't know when to leave
In case you're looking, that's my heart there on my sleeve
Ego trips and stupid slipups, I'm a mess but...
Scratched and bruised, a little used, but baby I work fine
You might call me damaged goods, but I'm one of a kind
My hair's a wreck
No, I'm not perfect but I'm not the only one...
2 I guess ... too long regardless for someone with a history of melanoma ...
I'm nervous ... I've got this sick uneasy feeling in the pit of my stomach ... I don't usually have that feeling ...maybe that's why I've avoided going to a new derm.
Wednesday, March 05, 2008
I hated having short hair! I begged and begged to have long hair! My sister, had long hair, she would get these rats nests in it, that my mother took 2 to 3 hours every saturday to work out, but I was told no ... I would not take care of my hair, so I had to keep my hair short.
The irony of the comment was not lost on me.
All through elementary school ... my sister kept the baseball cap on ... I begged for long hair ...
I entered high school and begged ... and was still told no ... my mom compromised by letting me keep it shoulder length and permed ...
(yes, that's an actual yearbook photo!)
So, when I graduated, I let my hair grow ... and I let it grow ... it grew ...and it was thick, and healthy ...and long.
And ... I loved my hair ... I could have used with some curl ... but I loved my hair. I loved the color ... I loved the texture ... and I loved the length. It eventually grew below my waist, then clear down to my hips. I would sit on it when I sat down.
I loved my hair. It was the long hair that I always dreamed of having! From early childhood ... I'd dreamed of having this hair!!
I hated my eyes ...I hated my chin ...good gravy what girl wants a jay leno chin???
I hated my body ...and everything about it. I had a chest that was way too large, not only was did it get in the way, but it was physically uncomfortable, and it drew way too much attention. For someone who'd been through what I'd been through ...that, was definitely an unnecessary part of my anatomy. I hated my arms, my gosh they are larger than life itself. My fingers are too short and my feet too big .... my legs too large and my hips too big ...there is nothing about my body that I like ...but my hair ... I loved my hair.
Then one day, a girl in the youth group challenged me to donate my hair to locks of love. We were supposed to do it together. I panicked at the thought. I argued with God for over 6 months about it. How could God ask me to give up the one thing about my body that I actually liked?
The one thing that I'd wanted my whole childhood but had been denied ... and was actually loosing ... because of medications? lupus? who knew what was causing it to fall out, but it was ... but why would God ask me to donate the precious inches I'd waited years to have?
But after 6 months of arguing with God about it, I finally told him "No, I simply cannot do it, my hair simply is my only thing about me that I can tolerate. I NEED my long hair to even look at myself in the mirror."
I went told him that in a church service on Sunday, and I went home from church and turned on the TV, a local news anchor was being interviewed about her battle with breast cancer. They showed her having to shave her head from the chemo .. "whoa ...dirty pool God ...but ok"
The next day, I went and donated 14 inches. Ironically, my hair was still half way down my back when they were done!
It was so hard to hear them cut those scissors, but my hair looked healthier with the 14 inches gone ... and 6 weeks later ... my doctor in an exam ... felt a lump in my breast ... I was frozen ... what if I'd kept my no to a no??????? How could I have faced myself in that mirror then? I sat in the breast surgeon's waiting room wondering what I'd have done if I'd kept my 14 inches of hair ... only to loose ALL of my hair ...
It turned out to not be cancer ... I was lucky.
2 years later I donated 10 more inches ...and still had it half way down my back, but by then ... my hair, falling out from lupus ... was looking unhealthy, and scraggly ....my hair that I'd always loved so much was becoming an object of frustration.
A year ago, I cut it to my shoulders. Complements galore came ... and tears fell from my face.
Everyone loved the new Peggi ...
I was frustrated ... I knew it looked healthier ... but I also knew it was the end of my long hair, for good ..
I let it grow ... and let it grow ... but today ... I got it cut again ...
I thought I'd posted on a forum in a tone that just mentioned it, but someone was able to 'read through' my tone that the mourning of my long hair ...
The identity that was caught up in what I saw as the only thing in me as beautiful ...
The intellectual part of me knows better .... that doesn't change the emotional part of me at all ...there will always be the little girl in me stomping my feet demanding the long hair ...
Sunday, March 02, 2008
ok, it's Sunday ... but hey ...
My blog, originally was started out as a patient blog. It's turned into a general interest blog with occassional postings of being a patient. When I do post about being a patient, it's very purposeful ...
Today, I'm posting in hopes of coming to grips with how I'm feeling ...maybe.
Maybe if I can describe for myself how I'm feeling ... maybe I'll actually believe it myself and allow my body to get the rest it needs.
Denial is a big part of being Chronically ill. So few people who are not chronically ill understand what it is like, that those of us who *are* try to make it easier for those who are not. We don't want to make life more complicated for those who are in our lives than it already is.
We don't like the sympathy rather than empathy. We don't like the statements of false hope when we need understanding and we certainly don't like the doom and gloom when we need statements of hope. The problem there is ... no one can read our minds and be able to tell us what we need to hear and often we don't even know what we need to hear ourselves!
To be told "it's all going to be ok" when we know ..."NOTHING is ever going to be the same again" and quite frankly ...that is NOT okay is not easy to hear. It is frustrating and sometimes downright overwhelming. When we are told by someone who is healthy "I know how you feel"
it is ... frustrating to say the least ...and sometimes cause for anger. Excuse me ... when you wake up and you stand up, and your legs don't function, you go to step and your knees buckle ... and you have to wait for 20 minutes after you've taken your medicine that helps your muscles function (Mestinon) before you can even take a step ... then, and only then ...can you say "I know how you feel."
A cold 2 times a year does not let you know how I feel. I dare say that I feel worse on my best day that you feel on your worst day. (Assuming you are healthy! If you are reading this and you are not healthy, then I'm not talking to you) If, I did not know what was wrong with me, and I woke up feeling like I do on my best day, I would jet off to the doctor in a panic of what in theheckhashappenedtomybodysomethingisdesperatelywrongohgodhelpmemybodyisfallingapart!!!!!
Ok, that is not what this post was supposed to be about ...that was what my I hate 10 things was about the other day. I guess I'm getting a lot of false sympathy in my life right now and it's annoying the fire out of me. So, onto what this was supposed to be about ...what I *feel* like lupuswise right now.
When I was a freshman in high school, a woman moved to our town. Lorrie Avalon. She later married and became Lorrie Sluder. She was an interpreter for the deaf. Several of us teenaged girls followed after her like little ducks ... where Lorrie was, we could be found, copying her every move. She was our hero! She was very patient with us, and took the time to teach us sign language. She taught us the very intricate nuances of interpreting, signing to worship songs and communicating in sign. She also taught us the special things we needed to know to understand 'deaf culture'. By the time I left Colorado, I was, an interpreter for the deaf.
I met a girl here, Marcy, who had learned sign at the same place Lorrie had, and Marcy and I signed together in a choir, Proclamation. We started a sign ministry at Grace fellowship, including interpreting for the deaf.
Signing was a huge part of my participation in worship ministries. Singing was definitely there, but signing was probably ..no, it WAS my first love.
Signing ... was my first love period. Over anything.
When I finally decided to go to college at 22, I majored in deaf education.
When I got sick with myashtenia gravis when Samuel was born, I begame too weak to sign. When I finally got diagnosed, the medications gave me enough strength to sign to music, at least enough for my own love of signing.
By the time I started at Southpark 10 years ago, the meds had helped enough for me to be able to sign for special music now and then. (About once a month)
During this time, I was, because of many symptoms ... I was tested repeatidly for lupus, the ANA kept coming back normal.
About 4 years ago, my arms and hands started to really bother me. Hot joints. Swollen ... and the fear of Rheumatoid Arthritis came up. So, they tested. Long story short ... they found the Anti Double stranded DNA and it was sky high .... no RA ... but the lupus they'd suspected since the beginning of the suspecting of MG.
My relief, was palpable ... my hands would be ok. My hands were my dreams, my hands were my life. My hands .... were my means of worship! To have RA meant to have malformation and crippling that would effect the ability to sign.
I was sent to a rheumatologist and as I expressed my relief in it being lupus not RA he sadly looked at me and said "in a small percentage, lupus *can* malform joints, don't count your chickens before they hatch"
Fast forward to today ...and ... my hands look like that of an RA patient. The joints are buldging, and the fingers are turning to the outward angle and my fingernails don't face to the top when I hold my hands flat. Frustrating to the least.
Signing ... is out of the question. I can no longer make the signs do what they are supposed to do. They just don't work right! Add to that the tremors that I have, and well ... nothing works right.
Discouraged doesn't even start to discribe it.
Today, my joints are swollen ...even my elbows, my breast bone and my feet are swollen and hot. I'm dizzy ... and my shoulders and hips ache. Pleurisy is a major issue today. I can't get in a deep breath. I'm wondering if I've got another case of pericarditis going, because it's soooooo much worse on the left side than the right. Not curious enough to go to the doctor though. I'll up the celebrex for a day or two ...
It's weird to have a swollen breast bone ... it's something most people would never even think about. But, it happens. At least, to lupus patients ... it's called Costochondritis. It's painful and add that with pleurisy and it makes breathing a rather painful experience. Moving, not much better.
The vertigo ... you wonder ... if I was breathing better ... would I be dizzy ....but then you go lay down ....and the world still spins and you know ... it's true vertigo ... and you realize you're in a true lupus flare.
And there isn't a dang thing anyone can do about it ... you can just wait it out ... because you're meds are topped out...
And you wonder
what did I do to bring this on?
Did I over do it?
Am I getting sick?
Was I exposed to something?
Is it the weather? (Most likely culprit this time ... we had cold weather, it suddenly got VERY WARM this weekend ... 70's ... and then will be snowing tomorrow)
What brought this on this time and what can I do, if anything to prevent it next time?
Here we go lupdieloo ... all on a saturday night ....
Saturday, March 01, 2008
We were prepared for this. We knew this would happen.
However, as this young girl read the file, she read that my disability began with the birth of this said 18 year old.
So, she got it into her head that ...if the myasthenia gravis began with his birth, then obviously, if he is turning 18, then I must be fine now that he is an adult! Makes perfectly good medical sense right?
So, even though, I'm scheduled to have an every 3 year review of my disability, and I'd just had one done the year before (literally, done in 2006) I had to go through the process again, simply based on the fact that my son turned 18 and my disability started with his birth.
Trust me, the counselor in Tulsa in charge of my case, NOT young, was less than amused. Especially when I showed up in person in her office. I did not plan it that day, but, I didn't look good, it was not a good day. It happened to be a bad day ...dark circles, drooping eyelids and all.
Anyway ...once the paperwork is in motion ... it's in motion and the caseworker can't say "I've seen this woman and she looks like hell ... case closed!"
So, I had to go through the whole recert process.
Somehow, I got it into my head that I was going to be denied.
My brain went into overdrive. How was I going to go to work? What would I do? How would I manage when I have days I spend most of the day in bed? How am I going to work when most of my work skills are waitressing or grocery store clerk ...both physically demanding jobs?
What in the world was I going to do?
Add all that to my already too much to do ... I was terrified. But, I kept that fear to myself. I didn't even tell my therapist that this fear was going through my brain.
Even though each week she'd tell me of all the MG symptoms she could SEE ... (ok, in all fairness, her mom had MG, so she's a bit skilled in visualizing it)
I get the letter from SSA ...
Not only did they continue my disability ..but I don't get reviewed for FIVE years instead of three. Because "you're health has obviously declined to the point that we don't need to reveiw you in the 3 year period of time. We will review you in 5 years and see how you are doing at that time"
um ... ok.