I am so tired I am about to drop

Except the problem is...I did drop.  This entry is a reminder to myself to talk about this when I've had at least some sleep or a coffee or something.  In the meantime, be careful out there.  Avoid falls.

Resucing My Brain, And Drugwatch.com

I've had a terrible time lately with memory and concentration problems.  These have been typical for me over the course of the years with lupus cognitive impairment.  However, all of my autoimmune-related blood work is actually really really good at the moment...good enough to have me wondering if my lab report got switched with someone else's!  Not that I believe the tests we currently have available are always accurate monitors of lupus activity.  Big NO there! :)


But this current problem with cognition just kind of "feels different" from what I have unfortunately had to become used to with SLE.  It is actually a different sensation that I seem to feel inside my head.  I don't go around describing this sort of thing much because I don't want to get locked up in a psych ward.  I have this horrific fear of going to a psych ward and having to explain my problem with fluorescent lighting, and then being assigned to a floor where at least one person thinks he the Antichrist, Hitler, Napoleon, George III.  Or Rush Limbaugh.


Slowly and inefficiently, due to the fact that the researcher here is also the one having the brain problem (I smell irony there; does anyone else?) I've been trying to find out what could be going on in my head besides lupus.  I had the cancer surgery in January, and am aware that there has been discussion in the past about possible long-term effects of anesthesia upon cognitive function, although the focus has been mainly on the elderly.

I'm also in the process of learning about the effects of surgical menopause, which include possible cognitive dysfunction related to the loss of estrogen.


Lastly, I want to mention that although I am a long-term migraineur, I have been avoiding taking the drug Topamax due to its reputation regarding possible effects upon memory and cognition.  Quote of the day:  "If you don't have a temporal lobe dysfunction or problems with other parts of your brain that Topamax hits, or you're at the wrong dosage, it will make you dumber than a box of rocks."

After all that I have been through with lupus brain involvement, I just didn't want to potentially add to that particular set of problems in any way, and risk becoming more rocklike.  So I've been sort of skirting around Topamax, trying a lot of other medications for migraine control and treatment, even though Topamax helped a close family member and therefore might be a drug which would reduce my migraine frequency.


And lo and behold, I learned tonight that a medication I recently started, a mood stabilizer, has some things in common with Topamax.  Aha! Eureka!  But it turns out that it is not recommended suddenly stop this med, so now what do I do?  "MAKE AN APPT WITH NEURO" may need to be printed out on a sheet of paper and stuck on my door (I have to leave this room sometime, and then I will see it!)  Because now the differential diagnosis for my half-dead brain is very very complicated.


Usually when I write, words just pour out.  Whether they are interesting or make any sense I can't always say :) but at least the process is pretty effortless.  But no longer.  It is hard to get through a paragraph without going blank at some point while writing it.  And so writing is no longer one of my greatest pleasures and also, since I now find proofreading almost impossible (formerly probably one of my few stellar skills) I have no clue whether what I have written is readable.  I'm actually lucky that I caught myself when I was about to post this on the wrong blog!

For the problems with writing, speaking, concentrating, remembering, making sense, and many other reasons...finding out what the heck is going on upstairs, you know, that place under my hair--is really really REALLY important to me.


So I want to thank this website: http://www.drugwatch.com  *.  This is where I learned more about my new medication.  The site has a wealth of information which could be crucial knowledge for anyone taking medication.  Although I certainly am grateful to be living in an era where "better living through chemistry" has even saved some of our lives -- pharmaceuticals are still complex things. And those of us taking a lot of medications which have never been studied in our particular combination, and who see multiple specialists, often end up needing to be doing some of our own research.  Websites are certainly the cornerstone of this often homebound, impecunious chronic disease patient's ability to do research.

The more people we have looking out for those of us who have little choice but to be guinea pigs, the better, IMHO.


Speaking of looking out for anyone, please volunteer to proofread this and tell me where I screwed up by emailng me at smlupus at gmail dot com :)



* FYI, Drugwatch.com is a comprehensive website featuring information about prescription medications that are available or were previously available worldwide.  Currently, Drugwatch is campaigning to spread awareness about Accutane Side Effects, which can include Crohn’s Disease, Ulcerative Colitis, birth defects and severe liver damage.

Dear Mr. President, Please Let Us Live

I admit to being heartbroken by some of what is both seen and not seen in the Affordable Health Care Act, signed into law by the President and supported by the Obama administration.

Yes, the bill does a lot of good things.  Yes, it is an historic and long-awaited passage of some health care reform.

And the thing about this bill is, even what help it does bring to citizens who are concerned about health care is being vigorously and viciously opposed.  We've got  a harsh climate for efforts to keep the bill from eventually being repealed as well as any hope for making the bill better.  So it is not always easy to criticize those who were involved in the bill's creation.

(But no, I do not think anyone should let the attack dogs keep them from speaking out about what they need and what they think is best for all of the nation's citizens.)

What I did not expect was an attack on Social Security during the Obama administration.  I knew that my own serious problem with the copays and deductibles I need to pay on the Medicare program, which goes with my Social Security Disability, would now continue--and that I would struggle and maybe not survive for this reason.  But I didn't think there was any danger of Social Security itself being in danger right now.

Well, I just wasn't paranoid enough.  Please don't shoot the messenger, but here's the bad news:

http://michaelmoore.com/words/latest-news/whacking-old-folks

I know that a Republican President, with the current incarnation of GOP leaders in charge (who I hope will be getting some complaints at some point from Republicans who have hearts and brains), would be harder on those of us dependent on Social Security.  I also think that a Libertarian would be harsher still. What I want to know is, who would be both sensible and compassionate?  There are a lot more things that could be cut before we stick the knives into the most vulnerable citizens.  Give me the red pencil; I'll do it.  Sheesh.  We are being help captive by some both nasty and incompetent budget-slashers and I for one am getting tired of always having the target painted on my back.

We do have to mobilize, which isn't so easy when you are sick and/or disabled.  I suppose the idea is that others should mobilize for us, but we haven't been getting a whole lot of that lately.

We have to be careful to avoid being labeled as expendable collateral damage in the war against the budget deficit.  By the way, did you bring about that deficit?  Did I?  All by ourselves?  Why are we supposed to feel so guilty for having gotten sick?

I'm in a lot of pain today and my joints in my hands are especially cranky but I'm going to be writing letters anyway.  You know, I'm not asking for an upper-middle-class lifestyle.  I'm asking for survival, for myself and for others who didn't have Lady Luck being a lady in the personal health department.

And Now, For The Nuclear Option...

(Psst...photo is just clouds...no nukes.)

I'm sorry, but I'm going to be randomizing instead of writing...I'm down-to-the-bone exhausted and barely know what year it is. Surprise, surprise, I've had a few more rough weeks in Lupus Land!  My way of celebrating Lupus Awareness Month, woo-hoo!  Let's all join in, and SING!!!  (no. not really. definitely not. please stop singing.)

For some reason, my blood work is really good now. That should be wonderful news, but a lot of us autoimmune types go through icky times when our tests come out great, but yet we still feel like some evil spirit comes to visit us in the night, sucks out all our energy, tears up our muscles, and smashes our bones.  Somehow.  With perfect blood work.  Truly.  As to why, don't know what to tell you.

Lately I've been feeling like I did pre-diagnosis, many years ago: migraines, some problems with memory and concentration, and every time the barometric pressure dips I'm totally disabled by the kind of fatigue that is just on the sharp edge of I-HAVE-TO-SLEEP-NOW...and, also, wicked arthritis.

This week, we had some rain, which I actually love.  Why do I love rain...? Maybe I enjoy having moist conditions to offset the tyranny of Sjogren's Syndrome , and cloudy conditions to keep me from getting sicker from lupus.  My lupus brain involvement gets worse with UV exposure.  It's really peachy, to not have my brain fried. So rain, sure!  Bring it on!

It's just that lately the pre-rain, or even just pre-clouds, have been so horrible for me that I  haven't been able to write all that much...because my painful, swollen hands "Just. Say. No."

I'm trying to plan out our upcoming move. And I don't have $ for movers, and this is really worrying me because I have had to face reality: I cannot pack anything up.  Even with my great blood work.  My hands won't do it.   They are on strike.  They don't care about the blood work.

So, so. Another non-fun thing that happened recently was yet another change in my psychiatric meds.  I've suffered from depression for decades, a condition which often goes with lupus.  More on this here: http://beepbeep.livejournal.com/1128077.html .

A while ago, I was on a high dose of a medication that has a short half-life and a nasty withdrawal syndrome (a syndrome to which I turned out to be very susceptible.)  So every time I had to take a dose of this med late, or miss a dose (like with insurance delays in working things out with the pharmacy--and I KNOW I'm not alone in having stuff like that happen!),  I became violently depressed, like to where I was afraid I might kill myself.  And, I'm told, I was very hard to be around.  So when my doc told me he thought I needed to go off of this med entirely, I agreed.

But as I've been decreasing this antidepressant, I've become more...depressed.  Kind of makes sense?  Added to this is the withdrawal syndrome, where every time I have to make my 37.5 mg "jump" downward, I have dangerous misery for up to a week--sometimes longer.  (Speaking of misery, when I originally was taken down an entire 150 mg at once...it was a living nightmare.)  The 37.5 jump is worlds better than faster reductions but still is a very harsh experience. I've very glad I'm only on 37.5 mg /day total, now.  There will be an end to this withdrawal syndrome, when there is nothing left to withdraw!

However, since I'm slowly getting more and more depressed, another med I take was increased.  This med is described as having some effect on depression.  I'm crossing fingers that it helps.  And crossing my toes.

I was also put on a second med to stabilize mood.  This one can cause weight gain...and what with having had estrogen-responsive cancer, and fatty liver, and left ventricular hypertrophy in the heart, and smaller lung capacity than I should have, and diabetes, and probably some other things I left out, I can't have any more weight gain.  (This is all aside from what obesity for so many years has done to my social life and my self-esteem.)  I haven't fought my way out of prednisone obesity by any means, but was actually starting to lose a little weight, finally, and that made me feel like possibly I might not die in five years from obesity-related problems after all.

Ok. I started the brand-new med on Friday.  It's Tuesday.  And I've gained six pounds.  I'm also swollen, have miserable nausea and queasiness as well as severe stomach pain, and am exhausted from waking up at night choking on whatever I had for dinner.

My long-standing reflux esophagitis has been a difficult case, complicated by good old obesity and also a large hiatal hernia, and I've had to take four omneprazole/day and elevate the head of my bed so my bed as treatments.  I hate doing this; my bed  is so unstable I feel a bit nervous. Oh, I also can't eat too close to bedtime, and...blah blah blah, more stuff.  All so I don't get reflux in my lungs, like I did once and had resulting pneumonia.  All of this means it could be a bad thing for me to keep taking a med that is giving me such GI problems.

Well, my psych doc is out of town.  I had to make an executive decision.  I left him a message.  None of this med tonight. I'm sorry; patient no longer complying.

Maybe the doc can work with my gastro or my endo, or another doc, or a bunch of them and come up with a way I can tolerate this drug.  And that would be fine with me, but for now it is going to have to be a NO.  What this NO will do to the depression, I don't know.

But, I woke up feeling emotionally better today, though exhausted from not getting to sleep thru the night.  I am sure it is that the withdrawal syndrome is starting to fade.  It is a good thing I was more together today than yesterday because I had to drive down to LA and back for my checkup with my gynecologic oncologist.  Because of the rain and slick roads there were some accidents on the freeway and this made the trip longer.  I am so tired I can't get out of bed now.  Dburr will bring a light meal to my bed...bless him.

So, nuclear, at last.  I hadn't forgotten.

I was assured that I don't have a change in the stage of my cancer or anything like that.  But because I had multiple tumors, the recommendation is for me to have some radiation.  This will be internal radiation and I've been referred to radiation specialists in Santa Barbara.

Sometimes I have a problem with showing people how I really feel because I've been through so much in my life that I'm kind of used to unpleasant stuff cropping up.  For example, my psych has trouble believing how severely I get depressed.  He said, "You don't look depressed."

And I know I don't look or act scared right now, either.  My first comment upon hearing the news was actually,  "I hope they (the radiation docs) take Medicare."  And the first worry I expressed out loud to anyone was about the damn copays I don't have the money for.

No, I shouldn't have to worry about every cent with all I go through in life, but I do.  It's like always having to look down a dark tunnel and hope a train isn't coming, and if I think about finances too long I just start to cry.  When I'm alone, that is.  I know that worry like this always makes me sicker but still, to look at me, no one knows that I'm about to collapse from a crushing burden of stress.

So, I don't outwardly show any fear of the nuclear option.  Bring on the nukes.  Take no prisoners.  Big C, you're not welcome here.

But psst...I wouldn't turn down a hug.

Lupus and Fibromyalgia Awareness

photo by my friend Scott Vahey

(the lupus symbol is the butterfly)

I'm still so used to Lupus Awareness Month being in October, when my birthday is.  Now it is in May.  My sister, who has lupus also, was born in May. But I don't intend to pass the torch!  Her disease is milder than mine and I want it to stay that way!

I wanted to do a comprehensive post on lupus, and I still might.  But World Lupus Day is May 10 of every year, and today is May 11, so I missed that deadline.  Guess what got in the way of me being on time?  Lupus!  and, probably, some painful fibromyalgia as well.

I'm doing great according to my blood work.  Just like my pre-diagnosis state, although the ANA test wasn't available then.  Come to think of it, I don't have my ANA test results yet.  Better ask for them.  Note to self.

Anyway, blood tests aside, I've been having some nasty joint pains, some I-just-hit-a-wall-and-that's-all-I-can-get-done-today fatigue, some I-just-got-out-of-bed-today-and-now-I'm-going-back-in-it fatigue,  and joint pain, pain on breathing, bad headache, etc.  I've also got hot flashes and night sweats which I assume are gifts from surgical menopause.  At least when you have a total hysterectomy for cancer you don't go around saying "Should I have had the hysterectomy? Was it a mistake?"  No mistake here.

I am going to take a shower and have some tea with actual caffeine in it, and shake my wet hair a few times like a dog, to get myself into a more alert state so I can lead tonight's local monthly support group meeting for lupus and rheumatic diseases.  So I'm just going to cheat and post some links here instead of writing something useful about autoimmune/rheumatic diseases...at least for right now.

I'm trying to teach myself that excellent is not always necessary; "just ok" can be ok :)  At least when you are sick for a good portion of your time, just ok had better be ok!  Tell them that's all they are going to get because you are sick, and tired!  So there! :)

(this assertive moment brought to you by...prednisone? Heh.  Inside joke.)

Linkies:

World Lupus Day

Fibromyalgia Awareness Day

Fibromyalgia, Mayo Clinic

Lupus Awareness Month Flyer (hey at least I did a flyer!)

Lupus Awareness Month, Lupus Foundation of Northern California  (they sponsor my support group)

Lupus Awareness Month, Lupus Foundation of America

Lupus Awareness Month, Cure4Lupus.org

About Lupus, LupusLA

Beep's Lupus Links

Beep's Autoimmune Room (under construction)

But You Don't Look Sick Dot Com

Lupus Support Group, Physician-Mediated

Fibromyalgia Support Group, Physician-Mediated

more later...!