Lupus Recovery Day and Other Challenges in Life
Jessie had been predicting I was going to have a rough few days. It is not uncommon for me to wilt like an octopus out of the water once I’ve had a few days, or even a day of fun, especially if the fun was in the sun. My hair lost its red because I stopped going into the sun, one of my high school friends noted that when we re-connected last week. That is because the sun made me sick. As a kid, a hard day of play in the sun left me with strep throat the next day on several occasions.
For me, lupus is mostly a bad memory. Many doctors consider it in remission but my body is just not right. I took low dose chemo therapy (methotrexate) for decades and Prednisone is even harder on your body. Some of what I felt yesterday was my recovery from the fun but not all of it.
I took a full dose of Effexor yesterday, I am going to try to take nothing today and a half dose tomorrow. I think I’m going to be able to find something and if I can’t get the Effexor which is an SSNRI, I will at least take a SSRI to reduce part of the withdrawal.
I can’t help but wonder if I really need an anti-obsession drug any more. Well I needed it when I lost George so the answer is probably yes, I do just at low dose. Obsession is a double edged sword. I find most things are. I have a determination in me that will probably keep me alive and I know pushed me through my college years which required near super man type strength to do. At 20 years old I was working three jobs and going to the hardest college in Mississippi and probably the south! I owned a home and had a baby son. And I graduated from Millsaps with a 3.15 GPA. I look back and wonder how I did that. Failure was simply not an option.
However, I can obsess on painful things too, or at least I have in the past and ended up doing damage to 
relationships most dear to me and bringing horrific pain upon myself through my own actions. That I was manipulated into doing them really does matter, I have to fix me. I’m the one that has to change, I can’t change the world no matter how wonderful I am. :)
Through all of this though, so far, I’ve managed to keep a smile on my face and peace in my heart. About 30 minutes yesterday was really hard but I took that second Effexor. What I’m feeling is in part is what lupus does to people. It is a contributor to lupies often gaining weight, well unless the disease almost kills them through kidney failure. Then we loose weight.
In the later 90′s, things were happening to my body that I didn’t like at all. I would try to exercise and then end up feeling like I was poisoned. Seems like I would do too much after a month of making no progress at all. Then I wouldn’t want to feel like that again and I’d end up giving up.
The Lenten prayer got my attention last week and maybe it wasn’t just by chance. When God talks to us, it is rarely with a roaring voice like we see portrayed in the movies. Hearing God is the hard part. I know a man that excels at it but he has spent most of his life training to hear. He believes God is in constant contact with us, we just don’t know how to listen or to separate out our own wants from His. My friend has trouble with that himself and he’s been working on it for many years as he is in his early sixties now.
This article is trying to make several points. For you normal sized people, maybe its not just a matter of self control and not being lazy. Jessie kids me about lazy and I say I take lazy to a science, it takes a genius to be this lazy. There is really nothing lazy about me. I’m limited though and well, I am smart enough to figure out lazy ways. LOL More and more evidence is coming out to show that fat is a medical condition for many of us and its not just a matter of will power.
I’m trying to explain a little about lupus. One of the things people with lupus face is “you don’t look sick.” When I was first diagnosed that is what my boss at work said. We lupies say we are glad we don’t look sick. Some of us die while looking not sick.
When every step hurts are you sure you would walk? When standing for 15 minutes causes you to break out into a sweat, are you sure you’d be able to exercise? Lupies get arthritis pain as severe as that of someone with Rheumatoid Arthritis. However, lupies are lucky in that the arthritis we get does not deform the bones in most cases. That because lupus is a connective tissue disease. What we have are the tendons and ligaments become inflamed. This hurts in itself but something these cushions often cause is bone to rub against bone in the joints and that freaking hurts! My main problem with lupus was the fevers and fatigue it caused me but I had severe arthritis for a while and one of side of my face is partially paralysed.
Don’t be so quick to judge me and those like me. I don’t eat enough to be as big as I am. I don’t eat right but I don’t eat this bad either. And, I worked with a nutritionist for years.
Finally, in this article I also wanted to talk about how Jesus can bring one much peace in the hardest of times It doesn’t mean your life is going to be wonderful. For so long, I expected God to make my life easy. I didn’t realize I expected that but I did. Paul suffered with what we think were medical conditions all through his adult life and ended up crucified upside down. That’s pretty much the opposite of easy. One can still get through it with a smile on his face and peace in his heart though most of us loose that ability from time to time.
So many people, including myself, confuse Christianity with living some kind of pure life. Folks what we think of as pure is not what it is about. Its not that hard, all we gotta do is love others as we love ourselves. I say its not that hard but then, I constantly get it wrong. I didn’t show Mike in Manila a lot of love, now did I. :) I reacted like the human I am.
I know believe Christianity is more about being thankful that God gave us a way into a paradise without being pure. However, I think the pureness to seek is how we treat others. I am no authority on the subject, but still, I think I’m right. I hope you’ll think about it bit.
As for the Effexor problem, there is a good chance I will have the generic version on the first. However, I have to continue to prepare as if I will not be able to get it because a sudden stoppage of the drug would be very bad. I don’t know if I could take the max dose of 300Mg and then just stop taking it and also survive. It would be a really bad thing to try to do. But, I take the minimum dose and I’m tapering just in case I can’t get it.
If I become a jerk with a short fuse over the next couple of weeks, now you know why. :) Hopefully that wont be the case though.
Tagged with: Christianity • God • Lent • Lupie • Lupus • pain
Filed under: Lupus
Like this post? Subscribe to my RSS feed and get loads more!
Get
To The Philippines Faster
I would expect you would have a rocky ride in the Phillipines what with all the UV there. I have lupus also but live in a much more temporate climate (BC, Canada) but the sun presents problems here also, but not year-round. I was in New Zealand and found the UV even in the shade a bother. I get tired of the sunblock and hat bit.
Lil, you are right it is a problem and I have to take even more precaustions. I haave done much better than I expected but I have some new things going on that I think is Scleroderma. I’m going to bee posting pictures of that.
New Zealand has all the season’s that Canada has, probably more pronounced. There is enough sun in the winter in Canada that you shoud wear sun block.
I make fun of it. I’m like a vampire, my skin litterally falls off if I get too much sun. I dissolve in the sun. I have lived like a mushroom for the last 20 years and I’m done with that. My hair use to be a bit red, brown with a nice reddish blonde tint. I’ve been hiding away so much my hair chainged color. A couple of my high school sweeties have commented on it. I mean from my high school days of course. LOL
Live or die, I’m going to get out there and live life. Now I could not do that and work, working required every ounce of strenght I had.
I wear sunscreen, yes its boring but I have no choice. I had to wear it even indoors becaue of all the UV light. I’m very senstive to it. Salt water does wonders for my skin though. :)
I also have a wide rim hate now. Shade but I need some real ones.
The pair I bought bear the name of an Italian designer logo but I bought them on a mountain for about $2.00. Hmm, that was last year during Holy Week and the pain is coming off, You’d think high dollar glasses like these would last longer. LOL :)