Waiting for Godot, I mean surgery date

I've got one of those migraines of major doom.  It started yesterday.  It responded to Maxalt for some time but then returned.  After three Maxalts I realized it would just keep boomeranging.  I then took hydromorphone for the pain, as I am instructed to do.  With my liver pain and liver enzymes elevated I didn't want to try Vicodin first as I usually do, since the liver doesn't care for the acetaminophen in Vicodin.  People forget how hepatotoxic Tylenol can be...

I'm trying very hard not to take anything narcotic today because I really need to go to the post office to pay for my support group's PO box before year-end, pay a bill at the bank, and get some food that I can eat without totally spitting on one of my medical diets.  But I haven't had a break in the migraine action long enough to feel safe driving even sans pain meds.  I've been getting vertigo along with the nightmare pain.  This thing basically has got to go.

Anyway.  When asking about my preop appt. I found out my surgery is going to have to be pushed back due to a change in the doctor's schedule.  So I no longer know my surgery date.  I will still have tests in LA on the 2nd.  I know the surgery will be at the very least a total hysterectomy with ovaries et. al. removed.  I'm hoping it can be done laparoscopically due to my poor wound healing from immunosuppressive treatment for lupus as well as the diabetes.  The tests on the 2nd will have some bearing on whether this is possible.

I really want to be held and kissed and comforted.  But I've always been really stoic, at least on the outside, and I don't know if people really know that inside I'm an emotional vulnerable lonely gullible soft thing.

On the outside I can joke about adversity (having become somewhat used to it) and kick ass when I have to (an outer personality change that was painful and took a very long time but was totally necessary for survival starting with fighting for the diagnosis of my mystery disease, not hypochondria but: lupus.)

I didn't realize I had quite so many of the risk factors for this endometrial cancer of the uterus.  I knew I was high-risk but not, I guess, megahigh risk!  It all has to do with how much exposure to estrogen one has.

My collection of the risk factors include:  starting my periods before age 12, never having been pregnant, irregular or possibly even no ovulation after starting Cell Cept for lupus treatment in 1997, diabetes, obesity (thank you so much, prednisone.  Oh yes, you are life-saving in lupus, but you come with quite a price in side effects), possible PCOS .

I'm really glad my new gynecologist did a biopsy of the uterus instead of relying on my normal PAP smear.  PAP is for cancer of the cervix, not the endometrium of the uterus.

Why won't this migraine GO AWAY?  I need to do laundry and answer a backlog of email.  This is so frustrating.  Vamoose, migraine!  Abracadabra!

No, I wouldn't say this was the best day I've ever had

It has been kind of one of those days which started a bit icky and then worked its way up to kind of a grande finale of yuk.

I woke up too early because an alarm clock went off too early.  And when I don't get enough sleep I do not feel well.  My fibromyalgia is a LOT better since I've been on Savella, so the day wasn't spent in a useless debilitating agony of pain, but I was achy and tired and a migraine threatened.

I first discovered, via the computer, that a dear friend of mine who has been working at a scientific facility for a long time now faces that facility's eventual closure, and not even for the most intelligent of reasons.

Then I went to an event and noticed that I really could not see up close, and had a lot of fluid in my eyes (a bit unusual for someone who has been going through a really really really really long flare of Sjogren's Syndrome) and the eyes stung, and so I think I've got pinkeye back again...and have no more antibiotic drops.

Then I was unavoidably late for an appointment with someone (support-group related logistic stuff) whom I am sure did not appreciate it.  Afterwards I went to get a cold drink at a drive-thru and got trapped in The Line That Took So Long I Turned My Gas Off And Sat There.  While sitting, I realized I did not have my cell phone.  So I went back to the event I had been to at the beginning of my rounds, and tried to find it.  The people there even called the number for me.  No cell phone.


I had hurt my knee just while I was driving today (sometimes avoiding the holiday desperados is a split-second thing while they run red lights and otherwise indicate they are running short of shopping time before Christmas) and had a bit of trouble limping back to the car.  That's when the migraine started to show up.  And the really blurry stuff in my eyes.

I hoped for an easy drive but almost hit something which dashed out suddenly into the street.  A black cat, crossing my path.  I had dressed for the cold air but was dying of heat prostration when I got back to the car.  And my old buddy, The Giver Of UV Light (UV light makes me sick), was shining extremely brightly right straight into my sore eyes; no way to avoid it in the direction I was headed.  A lovely lupus rash began to show up.  Wonderful...

By now I was just hoping my cell phone was at home because that was where I was most certainly going.

I got home and some luck!  Cell phone was here!  But I also then noticed that liver-area pain was back.  Too many vital organs being cranky at once.  You know, I sometimes get a bit concerned about all this health wackiness.  But, oh well.  FINALLY I hoped to be actually able to do the Christmas letter and get my cards out, not on time, but at least before Christmas.  The past "Medical Test Fortnight" being over with at last.

Got a phone call.  It was my gyn doc.  You would think I would have figured it out immediately, but that is how tired I am.  Also, how many times (countless) have I been told "your biopsy came back negative..."

Well, this one didn't come back negative.   Guess the roulette wheel had to go from black to red someday.

My ex-gyn, who dumped me for insurance reasons and told me my bleeding problems were no emergency, was mistaken.  I'm glad my new, cheery motto, "Trust No One," popped into my head and motivated me to fight my way past unreachable triage nurses and other ilk to get an appt. with my new gyn.

I have endometrial cancer.  Looks like probably in an early stage, so I'm not ordering a casket.  They will biopsy my lymph nodes to check that part out when I have surgery.  I obviously do need a hysterectomy, as soon as it can be scheduled.

My concern is that with immunosuppression, lung crankiness, a heart problem, liver doing ?, obesity, lupus et. al., I'm not a good candidate for surgery, but hopefully someone will feel confident taking on a patient who is a little more complex than most.  I'm certainly not taking out my own uterus.  Do-it-yourself medicine has its limits.

Another notch on the bedpost...? Liver disease!

Some people collect notches on their bedposts to represent the different persons with whom they have, um, shared their bed.  That wouldn't make a very impressive collection for me, so if I were to bother with notches they really should be for every new diagnosis I get of something wrong with me.  Now my liver is shooting pain signals at me and abnormal enzyme levels to the blood lab and produced an abnormal ultrasound as well.  Yes, liver, I hear you screaming "Me! Me! My turn!  Me me me!!!!"

More later, as it's time to take the car in.  Ultrasounds are not supposed to hurt for days after, but the liver didn't like being poked.  Not sure I feel like doing more driving.  Been driving a LOT...to medical appts. out of town, not holiday parties or anything cool like that!  Not that many parties are being given during the Great Recession, anyway.  I wanted a holiday party, so I gave my own on the 6th!  Take THAT, powers of darkness!  So there!

Important Patient Conference In Santa Barbara, CA

If you can attend, I highly recommend hearing these two doctors speak.  You can look up one of them, Dr. Daniel Wallace, at http://www.danieljwallace.com/ and see the books he has authored at http://www.danieljwallace.com/Books.html .

Note: please RSVP to attend.  Info:

Santa Barbara Patient Conference

Saturday, December 12, 2009

1:00pm – 4:00pm

Earl Warren Showgrounds

Warren Hall

3400 Calle Real

Santa Barbara, CA 91305

Lupus LA is pleased to announce its Santa Barbara Patient Conference.  Patients from Santa Barbara and surrounding counties will have the opportunity to hear from two of the top rheumatologists in Southern California:  Dr. Timothy Spiegel and Dr. Daniel Wallace.  Participants will also be able to submit questions about Lupus, Sjögren’s Syndrome, Raynaud’s Syndrome, Fibromyalgia and other rheumatic diseases and hear answers from the experts. 

1:00pm – Registration

1:15pm – Welcome

1:30pm – Problem Diagnosis: How we diagnose lupus and

        distinguish it from other similar diseases

        Dr. Timothy Spiegel

2:00pm – New Advances in Lupus Treatment

        Dr. Daniel Wallace

2:30pm – Ask the Experts: Question and Answer Session

This conference is free of charge and open to the public.  To register for this event, please email or call Lupus LA at info@lupusla.org or (310) 657-5667.  Visit our website, www.lupusla.org, for more information about our programs and events.

Support Group Meeting Tonight

The Santa Maria Lupus and Rheumatic Diseases Group is meeting tonight at 7:00 PM.  Anyone with an interest in any rheumatic/autoimmune disease is welcome to attend.  Email smlupus@gmail.com for more information.  FYI, this will be our last meeting in 2009.  Happy and healthy holidays to you all :)

First blog award!

I never thought I'd get to put up one of those cool images that link to a site which likes my blog!!!

I've seen them all over other people's blogs, of course. But I didn't expect to see one on any of my blogs. I've never been the type which gets much recognition for anything I do, or even very many "thank you"s or other positive feedback stuffs like that. What I get instead is the criticism whenever anything goes wrong! Something about me just seems to silently say "Complaint Dept."

Anyway this award thing came out of the blue and could not have been better timed for a much-needed lifting of my spirits. Thank you, disease.com !!!

I didn't know anyone even knew I was here, all alone, blogging my heart out, to tell you the truth. When I think about what I've been through with diseases, treatments, and what these have done to my life, the phrase "In space no one hears you scream" comes to my mind a lot.  Where does that come from, anyway? Wasn't that from an ad for the movie Alien?

 Ugh. What made me think of THAT film. I was up half the night last night, again, having a special relationship with The Porcelain God thanks to the vomiting my hiatal hernia sometimes likes to induce when I am trying to sleep, and the scene I suddenly thought of from the film--well, if you saw it, you understand what flashed through my mind. I'm a bit queasy now.

I just want to stay happy about my award, so time for some thought re-direction. I saw a great sunset the other night.  I'll try to share it with you below, if various technology gods are not too cranky.  And very soon after this sunset, I saw a shooting star on my drive home!  It doesn't get much better than that :)

SSRI Discontinuation Syndrome

Oh, this topic is so interesting...just felt like blogging about it for no particular reason...riiiiight!

A few people I know have been wondering where the hell I have been the past 2 weeks or so. Let's just say that where I've been, you don't want to go.

I've been trying to function, despite having my brain basically in need of a long vacation at a hotel with padded-wall rooms, but I am certain I didn't fool everybody. At least 4 people let me know I was not acting like myself...which I appreciated, as it was done tactfully and gently.

The frustration was that I was not sure if I was believed, when I assured them I had contacted my doctor and asked for help. I actually did so twice. Now that I am doing somewhat better I intend to follow up and find out just what went wrong--that is, why I didn't receive help, and what system I could set up so that if I ever need help again while perhaps not being able to communicate so well, something would still be done for me...

A lot of you know what withdrawal from prednisone can be like. I personally have a bad history of being miserable from prednisone, in the myriad ways that drug notoriously has for making one wonder why God would put the cure for too much inflammation, along with intolerable, even potentially deadly side effects, together in one place.

Please don't be frightened of short-term courses of steroids, but those of us who have had to deal with them long-term (and remember, many of the medications for autoimmune disease used right now just weren't THERE when some of us where diagnosed somewhere back in the Bronze Age) can probably point to a part of our body and describe how prednisone or an equivalent somehow messed it up! Anyway, for me, the emotional lability and depression triggered by steroids is significant, and withdrawal from them is mixed with both physical and psychiatric symptom exacerbations. Lots of fun, NOT!

I recently had to go up on prednisone for my notorious post-respiratory-infection cough (when I was 7 I had the thing the entire winter which had my mother being told I would simply not live long), a treatment new to me for this miserable cough but which actually works. But then I was coming off of the high-dose prednisone just AT THE SAME TIME as when I had to:

(cue sinister music) withdraw from the drug Effexor.

This was just one of life's little coincidences that help one understand what "perfect storm" and "failure theory" are all about! (cue dark clouds moving in, now.)

Well, two weeks of hell, and not quite over. Just over enough so that I think I might actually sleep tonight. I also think I am speaking English and am doing so without pissing anybody off at the moment...and without babbling nonsense. I think. I think. I hope this is the case.

But my dose of this drug was only cut, albeit too sharply for me, in half. That means I'm still taking it. Oh my freaking God.

I've now gone from not understanding why a med that was working for my long-term problem with either lupus-induced or steroid-induced or mixed-caused (at this point I'm not sure the origin matters so much) major depression was being changed in dosage...to being grimly and absolutely convinced I should get off of the drug entirely. And I wonder just how that is going to be safely accomplished. And hope my doctor agrees with me! Because I'm going off of it, somehow. I clearly overreact to it or something, or that withdrawal wouldn't have been the hell on earth that is was. And still sort of is. It's not over. I still feel rotten, just more manageably rotten.

Admittedly, reading Wikipedia is not like reading peer-reviewed medical journals (then again who can afford access to those any more) but I found this, at http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome , to be very interesting re Effexor:

"Venlafaxine

Sudden discontinuation of venlafaxine has a high risk of causing potentially severe withdrawal symptoms. Even missing a single dose can cause symptoms of withdrawal.[25][26] The high risk of withdrawal symptoms reflects venlafaxine's short half-life as well as its effect as a dual uptake inhibitor.[20] Discontinuations have a tendency to be significantly stronger than the withdrawal effects of other antidepressants including the tricyclic antidepressants, but are similar in nature to those of SSRIs with a short half-life such as paroxetine.

Symptoms of discontinuation are similar to other antidepressants including irritability, restlessness, headache, nausea, fatigue, excessive sweating, dysphoria, tremor, vertigo, irregularities in blood pressure, dizziness, visual and auditory hallucinations, feelings of abdominal distension, and paresthesia. Other non-specific mental symptoms may include impaired concentration, bizarre dreams, delirium, cataplexy, agitation, hostility and worsening of depressive symptoms. Online help groups consistently mention withdrawal from Effexor as triggering dreams of a particularly distressing and hellish quality.[20][25][26][27][28][29][30]

Electric shock sensations have also been reported[26][29] with many patients describing the symptoms as "brain zaps". It has been suggested the sensations may represent an alteration of neuronal activity in the central nervous system.[31]

Studies by Wyeth-Ayerst, the maker of venlafaxine, and others have reported severe withdrawal cases, including withdrawal as the presentation of a stroke, as well as neonatal withdrawal (neonatal withdrawal has also been reported with paroxetine, fluoxetine, sertraline, and citalopram). In some venlafaxine withdrawal cases, successful discontinuation was eventually achieved by the addition of fluoxetine, which was later discontinued itself without difficulty."

It is easier to say which of the above symptoms I did NOT have, since I suffered most of them and pretty severely.

1.
I do not know about my blood pressure.
My heart rate was noted by a doc as being too fast during this time: 110

2. I did not have auditory hallucinations.

3. No stroke.

4. No neonatal effects; didn't deliver a baby to have them.


--

I've gone off of SSRIs before and did not have anything like this happen, but I believe they were ones with a much longer half-life. I discontinued Prozac (fluoxetine) years ago due to headaches and then later went off of the replacement, Zoloft, due to diarrhea, exacerbation of restless leg syndrome and nervousness. I still take trazodone at bedtime for sleep betterment (although now I'm wondering about getting rid of it as well on general principles!) I discontinued Celexa, which had worked for me for many years, simply because it no longer worked, and replaced it with Effexor.

It took me a long time to find the dose of Effexor which seemed best for me and that turned out to be a bit high at 300 mg. But I had some prior symptoms while on Effexor of going oddly rapidly into depressive states, which led my doc to believe that this was not the best drug for me and that it could even be dangerous.

And I now totally agree with him! because a withdrawal like that means that I would be in big trouble every time Medicare Part D played its usual little game with my med renewals! ("Oh, your insurance isn't covering that on third Tuesdays...you'll have to fight for it...oh you'll be out of it soon? So sorry")

Right now I am completely exhausted, mildly depressed, mildly nauseated, and a bit scared. I also feel very alone. I'm not sure why the latter.

And I feel kind of like I'm drowning...because I don't know as much about psychiatry as I do about rheumatology, and I am somewhat overwhelmed now that it appears I had better start learning.

Honestly, I'd rather be at the movies or something. I kinda sorta remember going to movies, back in the day. I want to see a Disney cartoon or maybe a musical. Something really really retro and safe.

Benlysta

I was myself involved in a trial two years ago of a different medication, not this new Benlysta.

My med has helped some lupus patients who have tried it but it didn't make the primary endpoint in the study...although the drug is being used for rheumatoid arthritis and non-Hodgkin's lymphoma. The problem with it not being approved for lupus is that insurance often then won't pay for it for anyone with lupus...and it is very expensive...this is a common problem with other meds that are being used for lupus if they haven't gone generic, or if the patient takes enough meds so that even prices for generics can be a problem (how would I know about this financial quandary? don't ask!)

Although I am WAY WAY more than ok with the trade, I have to admit that in my case, I swapped nasty evil rotten kind of intense lupus for something else: a merely annoying case of catching-every-bug-that-goes-around-all-freaking-year-round. Well, usually merely annoying. I've not had great experiences when I've caught the flu...

...however, the people who say "lupus is like having the flu" forget to add "or actually it can be like having the flu, or not. Or can be like having the flu with someone also having split your head and every single one of your joints open with a hammer. Or can be like having the flu with a huge ball of fluid where your heart should be and while losing 1/3 of your own blood volume in a week, oh, and Alzheimer's, and did you know even your eyebrows can seem to hurt when every hair follicle is inflammed and ..." Well, I won't go on, but I COULD go on. Every lupus case is different and for each of us our individual flares of the disease can be very different. No simple summary will do here.

Jumping around from topic to nowhere back to topic again (because I have a fever and because it is after 3 am): as far as the I-now-know-I-will-SO-catch-your-cold thing...I learned recently that my B cells (component of immune system deliberately reduced by the med I tried) are not exactly quite bounced back yet. Low normal is 80. My level is: 2.

And I was very grateful for this medication and still am. But I hope this gives an idea of what some of us are willing to put up with, and with joy in our hearts, to reduce lupus activity...I consider the drug I took to be no less than a miracle for me! Even though it didn't make it out of the study. And even though if I needed more I was up a creek w/out a paddle because I could never have found the $$$ for it.

So, you may understand why there is a lot of interest in this "Benlysta™ (belimumab)" which has actually shown effectiveness in Phase III trials. For reals.

For us lupies, BIG news. GO, Benlysta!

Why is it sometimes so hard to sleep with a fever?

You would think not feeling well would be enough to MAKE us sleep! But it doesn't work that way. And since good old fibromyalgia nails me to an invisible crucifix of pain every time lupus makes me miss a night's sleep...oh not that I'm complaining, or anything...

I know there are some ppl with autoimmune illness who are concerned about having children

...and so here's the stuff on the health care bill and abortion rights.

Historic Health Care Bill Passes The US House Of Representatives...

and wears out one lupus patient.

I couldn't leave something this important undone, but it has been very hard to try and sift through all of the information, opinions, and passions.

Here's what I've come up with as being as representative as I could get over the past two days on The Bill:

http://donaldburr.com/healthcare.pdf

This health care reform campaign has been very much of a rollercoaster ride and I do not for one minute think it is over.

It is especially important that those of us who live in the U.S. and are coping with autoimmune disease in ourselves or our loves ones inform ourselves on how the bill might affect us and to let our representatives in the federal government know what we think about what is happening.

If you wish to contact your Senator about the bill quickly (the Senate has not yet voted on it) you are advised to phone or to fax. Email has been sent in large enough volumes that it may not all be being read quickly, and I'm told that mail to the Senators at their Washington addresses is still subject to the delay of search for anthrax or other dangerous substances.

My lupus is supposedly "fine"

But I've had some very hard times with health recently. I feel like all of my "diseases and conditions" are now on some kind of collision course with the side effects of the medications and of the enforced poverty and maybe even having to deal with being a bit older while still having to cope with All This Stuff...I don't know. I'm just incredibly tired! Like I could sit down and close my eyes and maybe feel like I'd had enough rest and be able to open them again after...a year.

Costochondritis

Costochondritis is considered to be harmless. I disagree. It can be entirely too painful, and pain can wear a person down to where they feel they are not even really alive...as well as turn a perfectly nice person into a bitch from hell.

Costochondritis also hard to spell. Frankly, costochondritis sucks. It truly does. I swear on a stack of Bibles that it is TOTAL SUXOR.

You heard it here first!

Things I Hate, #1038485

Migraines.

Oh how I hate you, migraine.

People say I never complain about them. That is not really true. I don't complain often, but I do complain...to the poor guy who lives with me, and sometimes to doctors. But since I know that I have to endure them, no point in complaining, really.

But that doesn't mean I LIKE them.

I hate the pain.

I hate the "down time" enforced upon me.

I hate the nausea.

I hate the interference with my vision.

I hate the vertigo.

I hate the sensitivity to light, sound, smell.

I know they can show up with lupus. I don't exactly like lupus, either. But again, no point in complaining. Just an occasional vent once in awhile to let the emotions out.

Just Enough Low-level Pain To Be Annoying

I'm not in agony, and I'm glad about that!

But I'm having trouble getting much done today and I finally figured out that I'm having enough pain to distract me and just kind of wear me down.

I think one fingernail has a mild infection partially underneath it due to the nail having broken...and immunosuppression from my meds. It is fairly painful when I type, so this may not be a long blog entry ;)

My joints hurt all over, and I have pain when I breathe that is probably good old pleuritis. My head hurts and there is some pain behind my eyes. Some of my muscles hurt as well.

Because this isn't knock-me-completely-off-my-feet pain, I didn't realize the pain was a problem until now, and it is almost 5 pm...I was blaming myself all day for not being able to get anything finished which I started.

I definitely hurt enough to qualify for being in bed asleep or doped but since I have a nasty case of lupus and fibromyalgia as well, I've had to learn to get by with misery that would probably shock someone with normal health status. That's just the way it is; something I've accepted. But I want to learn to forgive myself when superhuman endurance has taken the day off.

Does The Pasted Smile Have To Be On 24/7?

I remember seeing a therapist (voluntarily; my own idea even!) many years ago, long before anyone ever thought of producing "The Secret." It was pointed out to me that I smiled ALL the time, even when I was not happy inside. I had to learn how to let my feelings out. Well, that was then and this is now. Now I've got to dig through old musty storage boxes to see if I can find the Smile All The Time magic vial I must have been using then. Because now, that is a freaking requirement.

My sense of humor is the first thing that gets me into trouble. I keep trying to remind myself that I speak an ancient language understood perhaps still by people who live in New York City, but certainly nowhere else. Most people do not like me making dry observations of the world around me. They want That Smile and Sweetness! Flip the switch and turn that back on, girl!

I'm actually a generally happy person, but contented so much of the time that it is EXPECTED of me. And so I'm never really seen as being happy anymore because that's just "normal." To register happiness I would have to dance on the tables or something, and there is no way I'm getting up on those flimsy, unstable things and putting my feet on the last patron's filth, so forget it. Times have really changed. I'm heavier and tables are lighter than they used to be.

So if I'm not smiling I must be DOWN and DOWN is NOT ALLOWED in the new millennium! We create our own reality! Smile girl; create some world peace!

But you know, I could just be tired? Resting?

Lately I've been struggling with the joint pains again. They are not anywhere near as bad as they could be, or as they indeed have been before. In fact I could probably totally ignore this latest bout if it weren't for the fact that it involves, as usual, all of my joints. Except possibly for a few in my back, and I managed to injure most of those over the years of trying to lift things that were too heavy for me but I wasn't cute and sexy enough to get help.

There are joints where people don't think of...or at least I didn't think of until pain let me know. My vocal joint HURTS and that's why I've lost so many "phone me don't email me" friends. But today it hurt to use my voice AND my hands. Oh and my arms, shoulders, hips, legs, knees, ankles, feet (there are way too many joints in our feet, Lord, just please make a note of it). Even the tips of my fingers hurt from mild vascular stuff. My scalp hurts from tiny little inflamed hair follicles. Of course it hurts to breathe; that's so common it's normal for me now. And I won't go into intestinal pain; way TMI.

All of that is: not bad. My blood tests will probably be ok. And so I will not be treated for this flare. And I'm ok with that because the treatment options are toxic and I'm already taking as much of them as I want to...except for the ones there is no way I could afford to pay for.

It's not just the lupus. I have way too many things wrong with me now. I had two doctors try to tell me that, but I know it. I'm supposed to be trying to get better. Believe me, I am trying. I'm always trying. It's probably why I'm still here.

But I am getting tired. And nowadays there isn't even anyone to share the struggle with and get a hug in return. That's not POSITIVE THINKING, doncha know.

Yes, there are moments when I want to give these wimps an ice storm instead of the few drops of rain they've had to cope with once in awhile, and add the one-fingered salute to go with it. But the moments pass quickly. I'm not wasting my precious energy, which is in short supply, on them. I'm really hoping I'm not going to kick the bucket soon, but there are so many things I really want to get done first if I am. So I'm a girl in a hurry. I'll try to remember to SMILE as I shove idiots out of line, slide down bannisters, steal a fast car, hitchhike to the finish line if I have to.

No, I don't have a death wish. I WANT to live. I'm hoping I live long. And I'm not in any kind of physical crisis. I just sort of sense my body is whispering something to me that frankly I don't really want to hear.

Oh God, the lectures I would get for this post if quite a few people I know saw it! Good thing no one reads my blogs! Bwahahahaha.

Sick people targeted in CA budget crisis

It's not easy in CA with a serious or chronic illness any more. This budget process itself is getting sicker than any of us are, IMHO.

Please take action if you are a CA resident--or ask any CA residents you know to read, sign, and pass on:

CA Budget Crisis: Murder Is Not An Option

Happy Birthday, USA!

I've had to spend most of today in bed but I get to go out to dinner tonight and then to a special event :)

Hope my entire country had a happy birthday!

Photo Credit

I KNEW IT #5,369,281

I knew my big toe was infected (again) in a deep place near the nail that no one could see. What can I say; the intense pain is a special clue I receive that others don't. I have a very high threshold for pain so I have been up and around on it, and have basically been trying to dig around and find it myself (while shoving in every antiseptic I could find.) I wanted very much to go to my podiatrist who would have taken care of it but I didn't want to deal with the Wrath of Dburr if I were not ready for Anime Expo tomorrow at 0600 or so...

Anyway today in the drugstore formerly known as Longs my toe decided to make a dramatic announcement and drip horrid green stuff all over. I'm glad whatever was in there is coming out. I'm glad I was wearing sandals.

I gave it a hot soak with hospital antiseptic but this isn't something I can take with me when traveling. It would leak and stain everything. I'm not sure if I have band-aids, and I'm also not sure I should keep walking on it so much.

But I have to clear a path to the old crab tank in the room where all the furniture hasn't been moved yet because two molting crabs are in it and will need water while I'm away. And if I do need band-aids I will certainly be the one going out to get them. I haven't had enough to drink today and had a dizzy spell in a scary place. But I've got to get the laundry in! Somehow! Dburr isn't home yet and I think his kitchen needs my cleaning skills anyway. The betta fish is sick. I need to get a big dish for the biggest crab who is knocking the small one over when he tries to take his daily salt bath.

Oh...and I'm tired :) I think I got too much sun just getting in and out of the car today.

But I was right about my toe, dammit.

The word is now out that Michael Jackson had lupus

As a friend of mine wrote to me in email, it would have been a tremendous help to those of us suffering from autoimmune disease had he disclosed this publicly. Basically we have all been waiting for a major celebrity to either have one of our diseases and go public or to just adopt us out of kindness. Celebrity involvement seems to be the only way these days to get the media exposure needed for increasing awareness, which helps with early diagnosis and thus less severe disease, with fundraising for research and for helping patients, and with educating the public so that patients experience less prejudice and misjudgment.

However, I know private individuals who keep their lupus a secret. Their reasons generally have to do with employment and health insurance concerns. As someone who made the decision years ago to do the opposite, to be as public as possible in order to help others get diagnosed earlier in the course of the disease than I was, I know from experience that it is in fact easy to encounter problems with employers and health insurance once one is known as a PWL (person with lupus!)

As anyone who has ever had the good or bad fortune to be around me for any length of time knows: the Amercian social safety net for the chronically ill, and the opportunties that one would think exist for creative ways to contribute to society while still having health care, food, clothing, and shelter, are not there. Not there to the point that people even needlessly lose their lives. And improving this situation been so consistently opposed by one political party, for reasons I don't completely understand, that I had to leave that party over this issue. (Now, as an odd kind of passionate and vocal political moderate, I am equally hated by everyone, lol.)

Anyway, maybe MJ had lupus. He certainly fits the pattern of disappearing and reappearing (when too sick to do anything else some of us have no choice but to have "down time",) of doing odd things (could be some brain involvement, or pain med side effects, but a lot of the things have a good lupus explanation, like the sunglasses and the parasol,) and of being mysteriously ill a lot but with different parts of the body being affected.

Here is a link , and another link .

Admittedly I've known of the rumor that he had lupus for years now. But I never did learn of any confirmation, and there are a lot of rumors about celebrities which turn out to be untrue. Some, of course, have publicly disclosed it and have even helped with fundraising for lupus organizations.

I've heard that Emily Dickinson and Louisa May Alcott might have had lupus (two writers whose work I have loved) ... I admit to being curious!



Michael, rest in peace.

Good old lupus

Well, survived acute bronchitis, again. But barely.

The Cough of Doom is finally gone. Am almost, but not quite, finished with the prednisone withdrawal. I need to get down to 5 mg/day like I was before (wish I could be at 0...sigh. Am on 10/day now. Not so hot considering I have diabetes and osteopenia and AVN already...and have a history of steroid-induced high ocular pressure with glaucoma in the family.)

I got excited that is was summer -- formerly my worst season, but now I know I have to avoid sun and heat, and the horrible and strange colds and flu which have plagued where I live through the cooler months are now gone. However, I immediately overdid it. We needed to put a twin bed in our place so my mom can sleep over here sometimes. There are still a ton of books etc. that now need to be put away, but my body has gone on strike. Today I was crippled by joint pains and overwhleming fatigue. I keep falling asleep wherever I find myself. Exhausted. It was Tuesday we did the heavy work; I had aches and pains and was very tired yesterday, but worse today with some pain on breathing so I know it's SLE rearing its ugly little head.

It was a huge job to write this short entry! Everything feels soooooo difficult. I have one eye which I am trying to force open so I don't fall asleep but this is not working. zzzzzzzz.

Relapse

My flu relapse sucks! Kids, don't try this at home.

Lived Thru The Night And Hope That Was The Nadir

I did have a horrible night and came close to giving in and going to the local ER. I could not breathe well, but I didn't want to go. I couldn't afford the copay for one thing. Also, I don't do well in hospitals overall (all of the crazy sensitivities etc. I have do not translate to nurses) and that's where the real germs with might and power lurk, waiting for the immunosuppressed. And there is always some sort of bureaucracy that trips me up, the last time having to do with the fact that my primary care doctor is in a different city.

Today after finally getting some sleep I felt like a facecloth that had been wrung and hung up to dry. Exhausted, depleted. But I could breathe better than I did last night. I tried to get some very icky paperwork done today and I did, but only a little bit of it, as I can't do very much very quickly. Tonight I kept falling asleep in front of the computer and I'm going to go take a shower now and get into bed and turn out the light.

I'm grateful for being better today than I was last night and I hope I will be even better tomorrow. Fifteen days, an antibiotic, three inhalers, and a lot of extra prednisone later, I might actually be starting to get over this respiratory infection. I sure hope so.

No, I haven't been tested for H1N1. I do not meet the criteria:

"Testing for Swine Flu
Testing for swine flu is being focused on patients who meet the following criteria:
o Patients who have been hospitalized due to influenza-like illness
o Non-hospitalized patients with influenza-like illness who:
• Had close contact with a person confirmed to have swine flu
• Lives in a high-risk setting for transmission (e.g., school, prison)
• Is part of a cluster of people with influenza-like illness (only one patient needs laboratory confirmation)
• Returned from Mexico within 7 days of illness onset or cared for ill household members with this travel history"

So anyway, good night.

I am having a lot of trouble breathing

The only thing that works is what is left of my last old aerosol inhaler, rapidly depleting. The new one does not stop my cough or my gasping for air. I get a bad headache first and my chest makes horrible squeaking noises; don't know what would happen next.

I just love the suggestion that we go to the ER so they can gather real evidence on how much we need the old inhalers. Maybe some of us wouldn't survive the trip. Last time I was there, I almost didn't survive the triage--a security guard told the idiots that a lady who had been forced to wait too long finally passed out. Not to mention the costs to the patients (even insured have deductibles and copays) and to society with the ER being an extremely expensive form of health care delivery.

It's also the last place we immunosuppressed want to be. Where all the nastiest germs gather together in one place.

Was I helping to cause global climate change when using the effective inhaler? I swallowed all of the aerosol, I thought! Funny that so many gross polluters are still out there, while asthma patients gasp for breath... Not that the drug companies could possibly have anything to do with it, with the new inhalers being much pricier...

I seriously think lupus and Sjogren's have done some stuff to my lungs as well, but that's another story.

I've been very concerned about the environment, global climate change, been accused of being a "tree hugger", etc. I'm actually surprised that I'm now on the side of the aerosols! For this one purpose, that is...I would not survive an alternative which meant high-dose oral steroids for long periods since I get such horrific side effects to them. I don't know what they will do with me. The first step is making sure docs BELIEVE me...I need to get witnesses!

They shouldn't tell us that the tests show it's all in our heads, not our lungs. I've heard that one before; so many times before finally getting a correct diagnosis. I was one of the luckier ones when I started, at age 18, to really work on finding out what was making me so sick; only took five intense years, very harmful to my self-esteem, of "you must be neurotic", etc.--before learning at last that I had lupus. Been there; done that; bought the T-shirt; ain't goin' back.

I'm not alone; seems there is even a petition . Please sign it and tell them you have a friend who can't breathe...I seem to be doomed to go through this cough from hell after every cold, flu, or allergy season. It's adding up to a lot of time.

The rumor is that you can still get the old inhalers in Mexico. I've never been to Mexico. I'm getting sick from eating my former favorite, cherry tomatoes, which suddenly all come from Mexico instead of California. I'm going to have to make some kind of bleach solution or something recommended for the immunosuppressed. It seems watermelon this summer, now also only from Mexico, will be out entirely. I have absolutely nothing against Mexican people, culture, food, etc. I can't help getting sick, and I don't get sick on EVERYTHING I eat that comes from there, just enough times and badly enough to not want to play Russian roulette. So although I would love to visit, I'm afraid to. This immunosuppression stuff isn't a lot of fun, really.

Wonder how I can grow my own cherry tomatoes in pots sans the neighborhood cats. Just an aside.

Woke up, got out of bed, dragged a comb across my head...

and there the similarity to the Beatles song ends :)

I am having trouble breathing today. And it hurts to breathe. I've also got a nice big shiny RED clown-face lupus "butterfly" rash. I'm trying this new makeup I got from Clinique to guinea pig for my support group. It's green. Supposed to reduce red. I think it did a bit, but I may just have to look like I just stepped out of a sauna on this actually cool day...

And I've got joint and muscle aches, and am very tired, so probably won't be seen by people except those at the pharmacy and at wherever dburr wants to go for errands, anyway !

What's wrong with me lately

Well, I had some kind of flu bug that probably started affecting me on April 18. I don't have flu symptoms any more. Due to being immunosuppressed from lupus treatments, and in particular now being B-cell suppressed from receiving rituxan in a medical study, I am catching infections very easily. I did get a secondary bacterial infection in my lungs, cleared by a Z-pack (antibiotic.)

What's left is a cough and some trouble talking, breathing with any exertion, fatigue. At first I really couldn't talk at all but now that is better. This unfortunately is a typical problem for me, and goes back to April/October of childhood years when the allergies came around. I did see a pulmonologist, was diagnosed with acute bronchitis (no, you can't catch it from me -- but wit the H1N1 stuff happening now I can clear a room fast when I cough!) and seem to be getting better with several medications. Unfortunately one of them is good old prednisone. I had been losing weight at last, but who knows what it will do to my metabolism again. Hopefully I can get back to a low dose soon. I'm already swelling, ugh. And, yes, I do feel the tendency to depression, moodiness, and particularly oversensitivity to criticism. I keep reminding myself it's the med. And, I'm avoiding criticism. I'm ok if I stay quiet and peaceful, which is also what I need to get better.

Swine Flu Info

I really wanted to cut and paste the blog entry I made on another blog to here, but I am so tired I would screw it up! So here is the current info I have. I will be posting more on what the immunosuppressed (like those of us taking immunosuppressants for autoimmune disease) should do when I find out.

Today's Half Awake Words

I am so tired. I fell asleep really late last night and for some reason there were a million phone calls waking me up this am.

I've decided to make this blog my only lupus blog for now. I can't handle more than one lupus blog! It is hard enough to try to keep up on one.

There will be a support group meeting tonight. I lead the group and have to prepare. I want to bring some current swine flu info. I'm sure people are nervous about it.

I have a nasty cough. I did have a flu, gone now, but this is my usual dry wheezing cough that I get after any respiratory infection. It has something to do with the asthma and although I'm hoping to avoid extra steroids it will probably come to that to get rid of it.

My asthma is NOT contagious...

Now this is JUST TOO MUCH

Ok, found the last Maxalt samples (why won't my insurance give me Maxalt?) and the new nausea med; got the migraine to be a bit better by taking the meds and also restricting myself to lying down in a quiet and dimly lit room.

But no rest for the wicked, I mean the sick that is...I'm kind of dizzy so had dburr help me take my blood sugar. 290! Oops.

Now I have to try and walk around the house WITH a migraine and drink a boatload of water. And not much of the pasta dinner for my sick tummy. Got to bring that sugar down. Maybe pickles will help. Not that I feel like having any.

Have some kind of infection, too. Productive cough, although not a really bad one.

This is really too many illnesses at once and I'm getting kind of pissed off.

Got my latest blood work in the mail. Sed rate is good (I do not understand WHY because I have not been doing so well with the arthritis)...but ANA is back up. Not to its highest but 1:1280 is significant. Blah.

Would someone please give lupus the finger for me? I had to stab both of my middle fingers today in the great effort to get blood for testing blood sugar level. I've got Raynaud's. Hands and feet usually cold and lifeless. Doesn't go well with diabetes test kit requirements.

Poor dburr ; he has to be Nurse Dburr again. I can't be fun to live with.

Reminder to Self

Put today in the Headache Diary for my neuro.

At least he cares when I get these nauseating, blinding migraines.

I had so much I was looking forward to doing today and it is just. not. fair.

Sigh!

Out cold

Lupus has caught up with me again. I think I fell asleep around 4 pm, woke up around 9 pm for a very short time, and woke up again now at midnight...and I'm not going to be awake long.

Of course my rosy cheeks look so healthy!

It's my hair that looks bad. I need to have it done but medical crap has put me $$$ in debt again.

A Health Care Access Problem

Just one of mine ...

I'm in a good mood today, but...

the lupus isn't. Don't know why it felt like it had to kick my behind, but it's not telling me. Joint pains, pain with breathing, muscle weakness, exhaustion. Of course, could be worse!

Healing thyself

Healing thyself
beepbeep 2/21/09 06:00 pm
copied from other blog

One reason I wish dburr, the saint who lets me live with him, could move into the home he will inherit is that I would be closer to a decent hospital. However, if he is going to get work where we are now, then we must stay here as far as I can tell until that work is finished...unless we find a good carpool for him at some point. I really don't want to go back to the hospital here. For one thing, there is no food choice. That sounds trivial, but remember I have to eat every 4 hours or so for the diabetes, and it has to be snacks that are good for the diabetes, and also foods I can tolerate for my various conflicting diets. I pretty much know what I can and can't get away with at any given time, except for the diabetes, and now that I have test strips I'm learning that fast. But a hospital that just feeds you what they give you and on their schedule ends up making me very sick. I got by last time because my mom came up, paid to stay in a hotel, and bought me food!

I tend to lie down when I rest rather than sit. There are a lot of reasons for this, some of which I don't feel like sharing, but some of them are that I have two painful long-standing back injuries and I get arthritis often in the joints at the top of my legs just under my tush. But I have a hiatal hernia, a nasty one, so I sit up partially at least when I am eating, a sort of compromise. I also need water with my food. I don't know why food gets "stuck"...could be a scleroderma-type thing, or Sjogren's dryness, or GERD irritation, or whatever. Remember when guys would go around saying "So many women, so little time..." ! For me it's "So many diseases..." I wish I could collect something else instead. Doesn't have to be men, even. Seashells would be fine.

Because I know what I need, and I don't feel like arguing when I'm fighting for my life, nurses with control issues and I tend to really clash. This is one reason I often just discharge myself early! If I'm with a roommate that doesn't allow for me to sleep (or hello fibromyalgia), or someone won't let me turn the fluorescents off (wanna see a lupus flare?), or I can't choose my food, or have water with food, or sit the way I want to, etc., I will get sicker fast in the hospital instead of better. This is why I am often better off at home if I have someone to help me with whatever it is I can't do. I'm lucky dburr seems to find this interesting instead of annoying. Most people get tired of me basically having to order them around so that I will get well asap and become more self-sufficient again.

At the hospital from hell, Nurse Ratchett (name is from a famous book, young ones) would not give me food or drink unless I sat up straight on my painful leg joints, cos nursie knows best. She tried to get me to eat food I was allergic to but I balked there. She kept turning the lights ON (you have to have light to keep your spirits up and nursie needs the light to see where she is going) and I kept turning them OFF so I wouldn't get a worse flare than I already had. What they made me eat gave me diarrhea and then nursie was angry with me for having diarrhea. The list goes on. Basically I just got my oxygen until I could breathe on my own and then got out of there. The worst part, as far as I was concerned, is that since their phone did not permit long-distance calls and my cell didn't work in their building...I could not contact any of my own doctors, and neither the nurses or doctors would contact them for me!

Given the above and also the accelerating deterioration of our health care system I'm really trying to learn how to treat myself at home whenever I can. It really helps that the greatest doctor in the world, my rheumatologist, lets me email him with questions. If I didn't have to fight with Medicare Part D for my prescriptions and could order and read my own lab tests I would do well!

But this latest bout of illness was tricky. I got a chest cold, and not a very severe one, from my sister when I visited the family for my bro in law's bday. She tried not to give it to me but being immunosuppressed I managed to get it anyway. I have a bad history of pneumonia, bronchitis, asthma, and/or lung lupus following colds. So when I started to have a cough I couldn't stop and chest tightness and pain with breathing, I knew I had to do something, but what? I need an antibiotic when I get pneumonia because of the immunosuppression; I can't fight it off myself. But I don't do well with antibiotic side effects so that's my last resort. Also fighting with insurance for the right antibiotic is so stressful I probably would have blood sugar off the map. As it was the infection raised it to 296. My doc considers "danger" to start at 300. Just squeaked by :)

So I waited on the antibiotic and didn't drive the car in case I passed out and tried to keep breathing deeply despite the pain so I wouldn't go low on oxygen. Even though narcotics suppress breathing muscles I took some anyway so I would not have so much pain and wouldn't stick with shallow breathing. Finally I had chest tightness that my rescue inhaler had trouble opening up (I am not impressed with the new non-aerosol ones btw and I really don't think global climate change is primarily the result of use of asthma inhalers...) so I knew there was some asthma involved. Also, the incredible pain began to break through hydromorphone, which is a pretty strong pain killer. I also got very weak, had chills, was a bit nauseated, terrible headache, photophobia, joint pains...etc. Asthma and lupus in the lungs...both treatable with my least favorite drug in the world. I took my last Singulair sample for the emergency and then bumped up the steroids. I got the moon face back almost immediately. This drug and I are not friends. I've had to drown myself with unwanted water to drink to keep the blood sugar within non-hospitalization limits on the steroids. No steroid psychosis, thankful for that. So if the steroids worked, I guessed right, and if not, I have to get myself to a doc., and probably not one anywhere near me geographically.

They worked.

My doc says he trusts me to know what amount of steroids to take and when. I'm so lucky to have him. I didn't always have a doc like this. I'm not going to tell the horror stories now because I'm still pretty tired :)

Anyway, I've been bad about checking in with other ppl's blogs, and I'm sorry. The exhaustion sucks up time. I will try to catch up though!

In other news, California has a budget at last...and it made my local state senator even more infamous than he was previously. Sigh. Wrote about it elsewhere.

With the economic crisis affecting all of the folks who have been helping me to survive and the programs and services I rely on, I know this is not a good time to be in precarious health...and there isn't all that much I can do about it. My attitude now is that I really want to live but I am rushing to try and get some things done I really really really want done before my personal bucket is kicked. I know for a certainty that if I end up homeless and try to live in my car or something I won't last long at all. There are probably a million other likely scenarios that could kill me. It's a weird feeling to know that my country has already let a lot of people who had problems accessing health care die, and it doesn't make the news headlines. How I hate Social Darwinism. I have always believed that where you end up in life has at least something to do with where you start out and what happens to you along the way. It's not all controllable by us. I wish it were, and I know what the Create Your Own Reality folks have to say :) , but I don't buy the whole enchilada. I've seen plenty of people try their little hearts out and end up in bad places. Once in awhile, the random lightning strike hits somebody, and they have it tough.

Btw anyone who knew Dee from the subchapter leaders of the Northern CA Lupus Foundation: I just learned she passed away in her sleep, and her family has ordered an autopsy to find out why. My thoughts and prayers are with her family. I really liked her and will miss her. And no one could have been more motivated than Dee to work at being healthy, positive, and self-reliant. No one. I just don't think she got to create all of her reality, and I'm afraid I'm going to be pretty stubborn about this opinion.

Mirror, mirror

This will be an alternate site for my living with lupus blog. I can't always get to that site...for reasons I have not yet figured out! Also if I don't have my computer with me, I can't exactly open up iWeb and post...:)