Friday, February 26, 2010

The Price For This Migraine is $270, So I Can't Afford It

I've had this headache for days and so I contacted my neurologist.  He faxed a prescription for me for a med which would break the headache cycle.  Naturally my insurance doesn't cover it.  They want to substitute with a medicine I've taken before which, like the med I have now, isn't long-acting (which was the entire point of the new prescription.)  I am so tired of this entire country being held hostage by private insurance companies and the pharmaceutical companies as well.  The strange thing is that about half the country is bitterly opposed to any change to this bondage, even though it brings about needless deaths.

Wednesday, February 24, 2010

Want to do a blog update, but...yukky MIGRAINE. Again!

I've missed a lot of doc appts. recently due to the long recovery period for my surgery.  A total hysterectomy with bilateral salpingo-oophorectomy, to be precise!  I'm working on week 5 now of the recovery period.

But now I am going to have to contact my neurologist.  I've been having some horrific migraines which concern me, since it looks like the Lyrica I'm taking every day isn't working as well as it once did to reduce migraine frequency/intensity.  For example, I remember I had a horrific migraine starting the day before my birthday, in October, which lasted many days.  

Now I'm having more of these high-intensity migraines.  I've only had a few days migraine-free since the day I had my surgery, on Jan 22.  And I have no idea why this is happening. I do know that frequent migraines may be actually a serious problem.

Often if I take Maxalt (as long as my insurance is paying for it; I can't afford it on my own of course!) I get some immediate relief. I do better on Maxalt than the other migraine early-response medications. I can often knock out the headache if I take one Maxalt, then another a half hour later, and if necessary one more if symptoms reappear.  But I certainly don't obtain enough of the pills to be doing this daily.  Also, this new round of migraines respond to the Maxalt for awhile... but then return.  Boomerang.

NSAIDS do nothing for my migraine pain and most of them are contraindicated for me anyway due to severe GERD.  GERD complicated by a large hiatal hernia (inherited maybe?  my slender mom has one as well), and GERD nasty enough to have given me pneumonia before. The  only NSAID I can tolerate,  Celebrex, I am already taking for lupus arthritis.  I was taking Vicodin for migraine pain, but now that I know I have a liver problem I am concerned about taking too much Vicodin because of the acetominophen in it.  This means I'm actually better off with hydromorphone, even though I have several of the "discuss with your doctor" list of conditions for the drug.

My neurologist kindly takes the trouble to get hydromorphone for me.  However, the migraines I'm having now seem to need more of this medicine than what I was taking in the autumn.  I need more medicine in order to get the pain down to a level where I can at least minimally function.

I'm lucky that my mom happens to be staying with us right now because she has been helping out with my recovery from surgery.  For example, she is now the official taxi driver!  Usually I play that role since Dburr's vision prevents him from driving.  But I can't drive while taking hydromorphone, which means that usually I have to tough it out when I have migraines at times when we need to do important errands, or when we have doctor appointments (most of which are in other cities!)  

However,  I could never have driven anywhere with these particular migraines, even while, of course, going without pain medicine. The migraines have been accompanied by vision abnormalities, photophobia, sound and smell sensitivity, and sometimes dizziness and nausea.  

But one really odd thing is that the bizzare "half-vision" mystery thing I often get in my left eye with my migraines is not showing up at all in the current batch of headaches from hell.  A symptom I can't say I miss at all!

Sadness. I'm so frustrated.  I'm finally able to be up and around a little bit. I could have started to catch up on email...and blogging...and special projects--at last. Even though I'm stuck in bed a lot.  I do have this computer, thanks to Dburr, and I would be crushed without one! It is my lifeline when I am sick, which is too often, IMHO.  But the headaches I'm having incarcerate me.  In fact, looking at the screen just for this blog entry has made the pain worse, so I now need to spend some time yet again in total boredom.  Prison. A dark, silent, lonely  room with an ice pack on my head for company. Sigh.  

My life, right or wrong!  Actually, though, I'm  very grateful to HAVE life.  I'm just acting a bit weird  right now because it feels like someone took an ice pick to my head without me even seeing them do it.  If I ever find the one who did it...well...I guess there's nothing I can do to them! Rats! But it's Lent, after all.

Sunday, February 14, 2010

Autoimmune Diseases Summit

For information about attending or signing up for the free webcast, see the American Autoimmune Related Diseases Association.

March 2010 is National Autoimmune Diseases Awareness Month!

Sunday, February 7, 2010

Migraine. From. Hell.

OMFG.  This is a Big One.

Friday, February 5, 2010

Two Week Anniversary

I announced the big news elsewhere first and I'm sorry I ran out of steam and didn't put it here!

I had my surgery for uterine cancer two weeks ago.  I had a very hard time in the hospital, and am making a list of things that I was surprised to have to endure, but my surgeon was top-notch.  It looks like the cancer (endometrial adenocarcinoma) carpeted the uterine wall but did not, after all, penetrate it.  This was a relief and means I am stage 1a, although grade 2.  Stage 1a is the best :)  The cancer was caught early and the surgery should be curative!!!

So I'll be around to continue to write meaningless drivel in blogs ;)

Back to the subject of this one:  I've been suffering somewhat in my recuperation due to joint pain, periodic low-grade fevers, muscle aches, migraines, pleuritis...lupus, back in town.  I'm also just about to lose my voice again and I don't know if it's the Sjogren's (dry eyes, even though it's raining for a change!) or inflammation in the vocal joint.  I need to return phone calls but may have to beg for a volunteer secretary! Heck, I need an entourage.

Don and my mom have been doing so much so that I can get better.

My mom works all day to cook and clean and do laundry.  This is a gift from heaven.  One reason that where I live is such a disaster area which is truly dangerous to me is that there have been so many times where I am just too ill to do much--and there isn't anyone around who can do all of this when I can't.  Don has to focus on keeping his job, or we will be in even bigger financial trouble than we are now.  As it is, he's lucky to have any work at all in this economy which has been very hard on everyone we know  in the tech world.

But I am trying to enforce rest periods on mom.  Caregivers need to take breaks. Mom looks a LOT younger than she is, but she's 76, for God's sake.  I've already drained her retirement money for my medical bills and the massive over the counter medically-related expenses I have all the time...  I am very stressed by the fact that I can't think of anything I can do to ever make this up to her and to help her out.

And now Mom's expected to be a nurse!  Since Medicare home health care can't have a nurse come out daily indefinitely (it's not like the current social climate is going to encourage any increases in the help provided to seriously ill or injured citizens) , my caregivers have to be taught how to clean (with saline), unpack and pack (with gauze), my infected incision (I've only got two B cells from an experimental trial of rituxan; what did anyone expect? although btw the drug DID help me with the lupus!) -- and put the dressing (gauze and pad) on with special tape.

When poor mom was watching the nurse today in order to learn how to do this, she looked like she might faint. She is scared of hurting me when digging the the packing out.  And the strip of packed gauze, covered with blood/ooze when extracted from my wound before putting in a new one, is not the most pleasant thing to look at..Don, on the other hand, despite only being able to see with one eye--and with that eye only when up very close to what he is looking at--really loves medical procedures.  He's been my uncredentialed doctor here at home and has truly helped keep me alive.  I think he's ready to do surgery now ;)

The wound being infected means I'll have a longer recovery period than previously estimated.  But I already knew that I would take longer than the average bear, since the incision is a long and deep vertical one instead of the tiny one I would have had if the cancer could have all come out via laparoscopy.

I am so glad the cancer is out.  There are so many reasons I don't want to leave the world right now.  I am so grateful I have a good chance to stay.  I have a lot of people to thank, including my sister Patricia who made sure I got to a good surgeon despite my severe financial problems and even took off of work to be my patient advocate on numerous occasions, and my best friend Joyce who helped me in the hospital and drove me all the way to LA for my postop, and a LOT of others who have been loving and supportive and have helped me in getting through this.

I want to thank a lot more people when I'm not exhausted from such strenuous things as typing a blog entry on soft touch keys while lying in bed.  I'm not going to win any stamina contests right now. Also, Medicare has paid for a great deal of help for me, including the nursing services and an occupational therapist and an a physical therapist coming to where I live.  I want to explain more about this, but I get so tired when I try to do much of anything and so have to end this blog entry...more later but when I've had more rest !


Monday, February 1, 2010

It's Been A Hard Day's Night

And I remember hearing the band who wrote that song on the radio BEFORE they broke up.  I'm practically a centenarian. My favorite band, too.

I've been posting at another blog just because I had surgery and a rough hospital time and then recuperating at home comfortably with wonderful caregivers (my mom and Don) but with medical surprises every day.  Quite an adventure, but I would have vastly preferred Disneyland.  I really miss Disneyland.  Before it got so expensive, I went every year for my birthday.  I want to go again after I survive this current ordeal.  I need a treat, really badly.

I want to write about some of this but right now I have to get ready for an important medical appt. in L.A. But here are some of the posts I really should have made here.

Boy is cancer time-consuming.  I'd say I almost miss lupus, except, of course, lupus hasn't gone away.  Makes it interesting when my ability to do activities of daily living gets evaluated ("but it will be different tomorrow", I mutter, under my breath.  Cancer is the newbie on MY diagnosis list.)

About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at that I've had so long I'm probably stuck with :) My other blogs are here on blogger...