Category: Uncategorized

 

I have a horrible problem.  I have tried for years to stop it but as soon as I have a cardboard covered victim within range, I loose control. Going off of gluten has been a huge help in this.  However, the damned Chex people had to go and make tasties out of rice.

Assholes.

So, I keep killing.

I have been doing weight watchers online for several weeks.  I am very focused and I write everything down.  I really, really want to lose the weight.  I think it is holding me back from regaining more of my health.  My sickoid body just cannot carry around all these extra pounds.  Weight is one of the ONLY areas I have any control at all over what is happening to me, so I am damned sure going to try to lose some.

But then, there is the cereal killer.

She used to strike without warning, day and night.  But, I have met her head on during the day and tamed her.  She can come in the house if she plays nice and gets counted with the other weight watcher points.

But wait! Who is She?  Is She the cereal or Me?

Who is the Killer?  I think we know don’t we?  It’s me. At night, restless, as always, the killer in me awakes and sings the song of her people, “refrigerator,pantry, kitchen…go you must!”

This voice, the killer.. often sounds like my beloved and mourned father.  For it was from  him that I learned to heed the call of the night time kitchen.

Sometimes I feel as though a string was pulling on my chest somehow and as it grows taut, I know the only cure is to head downstairs and into the kitchen.

All fanciful stuff, eh?  Not really.  I could go on for hours about my psychological relationship to food. But, I won’t!

Right now, the only thing I am consistently eating at night that has the power to undo all my great strides in the day time, is chex cereal with lactose free, skim milk.  It is to these depths that I have stumbled.

All I can do is remove the offending box of crunchy sweetness.  Hopefully my urge to kill will then lessen with time.

I know the cure. NO MORE CHEX.

No more venturing over the gluten line (which is bad, bad juju for me) and eating my daughter’s raisin bran.

NO CEREAL KILLER.

I can kill fruit or two point yogurts or celery.  Or, I could just drink a big glass of water and tell my internal voices shut up.  After all, those voices are not my daddy, not really.

He would never sabotage me like that.  He hated doing it himself.

Each and every night when I go to bed, I pray for two things: “Eternal, let me sleep and if you don’t mind…. keep me out of the kitchen!”

And there is nothing, nothing more irritating that having my spouse remind me of research that reports that night time eating is a huge cause for weight gain.  Really?  I have NEVER THOUGHT OF THAT!

Bless his heart.  He eats like a pig, Then he goes and runs for miles with his ears flapping in the wind.  I want his body.  You know, I want it, literally.

If we really do get recycled, as the Buddhists believe, I am coming back as a tall, athletic person that can run fast and eat lots and has an iron clad immune system.

But for now, in this life, I have mountains to climb:  Mountains of cereal.

I must not tunnel through them like some sort of gopher, jaw unhinged, chewing away.  I need to climb up and over.  Maybe when I am beyond and have a better view, the urge to kill will subside.

Maybe…

 

 

I have been trying really hard to lose weight.  This is not a new issue for me.  But, it did get more complicated by some of the medication I have had to take these last few years.  Some of the drugs I take cause appetite increase and I didn’t even know it.  Some, like prednisone, are notorious.

Last year, I was on prednisone for five months.

Some of the drugs that actually help me with pain and mobility, I just won’t take.  They make me blow up like a balloon.

So, long story short (short and fat, actually!) I am counting Weight Watchers’ points online.  Weight Watchers is my old friend.  I think I have been on every program they have ever had!

This is the first time I have done the on line program exclusively.  I like it.  It is better than paying every week for those horrible weigh ins!

I have lost about six pounds in eight weeks, which is ok.  I have to be careful because I have eating disorders.  As a young woman I was bulimic.  I even tried anorexia but I was never committed to it.  (I am NOT belittling that disease).

So, here I am, trying to do this on my own and on Thursday I had my son with me and we were in downtown Austin.  I had to see a doctor and my fourteen year old was out of school for fall break so I thought it would be nice to take him to the Whole Foods on 6th… (the Mother Ship). When we got there lunch was just starting and breakfast was still laid out.  My son was still a teen-aged zombie from being awakened by his rude mommy ahead of his own body clock.

I was casting around for something gluten free and that I could count the points.  The devil bitch that keeps me fat was sitting on one of shoulders saying, “Fuck it, man, you are in this food paradise, get something goood.”

On my other shoulder, my weight watcher angel, who is sometimes soft spoken, was saying, “No, don’t listen to her.  She makes very bad choices and then you don’t like yourself.”

My son wandered over with a plate of deviled eggs.  Deviled eggs?  WTF?

I asked him, “Is that all you want while we are in here?”

“Ugh.”

“Okay,” I said.  “I will decide.”   Then I saw the salad bar.  It is huge and sort of mind boggling.  I grabbed a recycled, earth conscious piece of cardboard that is supposed to be a plate and started to load it down.

I was getting really excited.  These were all zero point value.  I could have my Weight Watchers’ and eat it too:)  I even got crazy and added some tofu and cottage cheese, which I knew I would have to count.

My son was shadowing me at this point so I hurried to find the oil and vinegar. Thinking I had spied them, I walked quickly to the next long buffet table and started pouring what I thought was vinegar. Oddly, it smelled funny.  My son said, “Umm Mom…”

I looked up from my happy and righteous salad fueled haze and noticed what he had already seen, I was at the breakfast buffet, pouring maple syrup on my salad.

Well, shit.

I did add some vinegar because I thought it might help.  Then I proceeded to just dump it.  However, my son has a higher set of moral standards than I do.  He got very freaked out.  As we went to the cash register to buy the $3.00 drinks and $7.00 deviled eggs, I confessed my mistake to the cashier.  He said, “you don’t have to eat that.”

Then he offered to ring it up and then I could go back.  It was $15.00 worth of vegetables and maple syrup!

I declined his offer.  I came back, head bowed in humility, with yogurt and a gluten free oatmeal bar.

This whole incident brought something up in me that has been on sabbatical for a while.  My sense of humor. I realized the next night when I went over my points value by eating cereal at night (not even gluten free) that hating myself for my idiot or bad habits just isn’t working.

I have to love myself and treat myself with good humor.  After all, this is the only body I have.  It is FAR from perfect, but I am trying.  Every, single day  I am trying to take care of it and doing the best I can.  If I screw up, I should laugh and move on.

I think this is true of most things in our lives; even the grim ones.  If we cannot find the humor in them, we are screwed.

My revised understand of  this is “it  ain’t over yet, baby.” What I mean is,  life just beats the crap out of us until we become grim and bitter; and we just cannot let it take us that way.  If we do, we are already dead.

Life really is too short.

So, I am an idiot who pours maple syrup on a salad. I think that is funny.  But, I won’t do it again!

More than likely, I will do something much worse:)

 

I have learned from the online CVID (Common Variable Immuno Deficiency) group that my problems are far from unique.  In fact, I am quite lucky.  My body has not suffered the level of trauma that many with this awful disease have.

However, going from one crisis to the next, seems to be par for the course.  This week, my crisis O’ the week has unfortunately been helped along by poor doctoring.

I have been having back pain for ages.  Really, ages and ages.  It started in my twenties and I am now in my late forties.  I used to see a chiropractor.  Over the last few years of chronic illness it has sort of been background noise, if you know what I mean.

“Ack, I hurt on my tail and my hip, who knows what that is?”

It was just one more hurt. I figured when it got bad that it was my kidney or something. Long story short, this week I went to see the neurologist, pain management doctor.  He decided, and probably correctly, that my back is suffering from some degenerative disk problems.  So, without any warning, he came at me with a syringe full of Kenalog (a cortisone product). He started injecting it in my back near my hiney where I have all the sore spots.  He was very self assured and said it would take the pain away.

Touche’

No, it has spread and worsened.  I have had no sleep due to the steroid and the pain,which has now moved up my back.

Angry much? Yes, I am.  I called his office yesterday and he wasn’t in.  “Lay on a heating pad.”  Rrrright… trying to work here!

“Call back if no better tomorrow because he will be in the office for two hours.”

Well Shit. I don’t want to go in when it is convenient for him.  I don’t even know if I trust him at this point,  I would have been much better off if he had just left me the hell alone.

I feel violated.  What to do?  Fake it?  I want to see my son’s guitar concert today.  I don’t want to run after doctors.  However, it is almost a guarantee that if I don’t address this, I will end up in the hospital.

Next time a doctor comes at me with a needle (oh, and no alcohol swipes!) I WILL RUN.

I finally was able to infuse my igg medicine last night.  I feel better.  It is like getting a giant shot of espresso.

The shit I have gone through these last two weeks to get the medicine is just unbelievable.  I feel violated.  I know I need to backtrack and alert the authorities to the gross medical negligence of the pharmacy that handled my order but I don’t even know where to begin.  They messed up by:

1. Not verifying with my insurance in time to continue my treatment.

2. I did all of the leg work to get the insurance verification and then found out there was never an issue there.  My diagnosis code means I will always be approved for this medication.

3. After approval they told me I would get my medication but then changed their minds and decided they didn’t have any in stock but didn’t call me back.  I called them.

4. I spoke with the national rep. for the pharmacy company every day for two weeks.

5. I was told the medicine would be delivered on Saturday and no one came or called.  On Monday nothing again.

6.  On Tuesday I was told, “we may or may not get a shipment of your medication.”  Then, later..” we got it and are having a courier deliver it to your house at 7:30 this evening.”

7.  It never showed up.  I waited up and took my pre-meds so I could infuse but nothing ever came.

8. On Wednesday I called the national office and they tried to find out the problem.  They were told I called and said, “my meds got here.” That was an outright lie.

9. My husband called the local office for me because I was too worn out to deal with them anymore.  He was told it was sent UPS.  He came home and waited for the delivery and had to work from home.  I had another doctor’s appointment.

10.  The shipment arrived with all of the ice bags melted and the wrong needles.  I used it anyway.

I feel better today and want desperately to put this behind me.  Yet, I am so afraid of next time.  I am also afraid of what happens to other people who cannot speak up for themselves.  What happens to them?

Where do I go?  Who do I tell?

I have to keep going with this.  My conscience won’t let it rest.

 

This has been an eventful six weeks or so.  I started but never completed a couple of posts.  Let me summarize:

1. I spent a week in the hospital with a kidney infection.

2. My interstitial cystitis (torn bladder and bladder spasms) is in full swing.

3. My insurance company is stalling and I have no infusion medication so I am open to all infections.

That is just a taste of the medical fun.  In addition, my daughter started college!  My son started the eighth grade.  My husband is busy trying to keep us afloat.  It has been a tough time. Frankly, I have been depressed.  I feel as though I cause more trouble to my family than I am actually worth these days.  The bills are mounting up and I am no longer able to work.  Even though I am on disability, it still is not enough.

I get tired of the pain and the isolation and the fatigue.  It seems there is never an end.  There is never a day where I am going to be ‘cured.’ I have to live with that and try to go one day at a time.  Sometimes that is very difficult.

I have been in the ER twice this past week with horrendous pain. My bladder and kidneys are in spasms due to the infections I have had.  I have pain medication for it but not enough.  I have done everything every doctor has asked me to and still it is not enough.

Today, at the request of my Urologist, I called my pain specialist.  The Urologist wanted me to call and ask for more medicine until my new medications can take effect.  His response? “Use a hot compress.”

Rrrright. I would like to see him put a hot compress on his torn and bleeding bladder.

I have also been fighting insurance all week.  I have made multiple calls to multiple people to try and get them to send my infusion medication.  This med is the one that keeps me from being really, really sick.

It is demeaning to explain it over and over to people who do not care.

I am depressed.  I hurt.  I just don’t want to keep doing all of this forever.

I am sorry if this post is not clever or cute.  I don’t feel clever or cute.  I feel flattened.

The End.

 

There has been a lot of good this week.  I should have expected that the bad would come and bite me in the ass sooner or later.

Let’s see: Monday was fine.  I just had some fatigue from Sunday’s infusion.  All in all I was happy with myself.  I started Weight Watchers online, did the grocery shopping, picked up the kid and cleaned. I cooked dinner and got several other chores done: A success!

Tuesday: Felt a bit wiped out but plowed ahead with my nasty daily phone calls to my medical creditors.  I have so many that I call one a day in order to work out payment plans or determine if they are correct or whatever.  I had a 2:00 appointment with the Urologist so I could get some more medication poured into my bladder.  It did not go well.  She could not insert the catheter.  After repeated tries, we got lucky and I got a really swollen urethra.  I left with the medicine installed. I spent the rest of the day curled up in bed with pain and cramps from hell.

 

Wednesday: Kicked some ass… I mopped, vacuumed and swept (not in that order) the whole downstairs.  Then I took care of more bills and my aunt’s bills and took girls to the mall.  I picked up my son and we made it out to dinner…

Then: Whammo

NO SLEEP LAST NIGHT.  My rash is here: the scaly itching that feels like fire ants under the skin.  I have had several biopsies but no one knows what it is.  I have been told it is an ‘atypical autoimmune rash.’  Thanks for that.

I spent time on that black hole known as Facebook. Only the lonely are there at 3:00 a.m.  It is like traveling the aisles of a 24 hour super store. You run into other people who are roaming the aisles looking at nothing. All of us just wandering, while we try to kill time.

I wish I knew why my sleep was so disturbed.  I have been told it is common for people with auto immune and primary immune diseases.  I have learned not to fight it too much.  However, I wish there was a way to fix it.  I take sleep meds.  On the nights like last night, I get up and take more meds in the hopes that I will pass out.  It never works.

Sleep is an important key to health for anyone. For me, it is pivotal.  If I miss too much, I will slam against a wall of pain and flare: some part of me will literally swell from the inside out.

I suppose I should try another sleep study.

I have had one of them.  They are just ridiculous.  You can’t possibly sleep!!!!

They have you so wired up it is awful and the idea that I am being watched like a lab rat, really is off putting:(

Oh well, I will sleep eventually.  Today I power through and hope for better..

Sleep is a wonderful thing.  Don’t you agree?  I find it is the universal equalizer.  It can make or break me. If I am sleeping well, and for me that  is like ten hours a night, I can keep going without  getting too sick. However,  when something gets in the way of that good sleep, I am screwed.

I start to have more pain and end up with a host of unwelcome symptoms.

The thing is, sleep issues are part and parcel of the disease(s) I have.  Lately, I have found that I am reactive to every new medication that gets introduced to my system.  This time it has been a formerly “easy” antibiotic.  By the time I reached day five, I just could not sleep.  I couldn’t turn off.  I had two nights of on again and off again sleep.  This caused pain to flare and joint pain like fire and stomach issues…. fun.

I even had some psychedelic dreams.  They were LSD worthy:)  I dreamed my aunt was dressed in a broccoli costume, very elaborate, and feeding me broccoli soup as I lounged pathetically on the floor. Seriously, I am not making this up!

Last night, after lying awake all night and feeling like crap, I realized what the problem was.  Of  course it was too late to fix it;  Now my body is in full flare mode.

This is bad.  My husband is leaving town for work for a week and I am in charge of house and kids with zero help.  My daughter is sick and my son is starting back to school.

I also accepted a job (which I can do from home).

Should I freak out?

NO… I should sleep. But it ain’t that easy.  I just have to get through the days and do the best I can. If I have learned anything on this ride, it is that the ride just keeps going.  I can get tossed and feel pretty shitty but I have to climb  up and get back on.

I don’t honestly think I will die from the fall.  It won’t be that neat.  I used to think, “there is no way I can be sick like this the rest of my life.  I am either going to get better or die.”  Now I know the truth.  I am not going to get much better.  I am also not going to die anytime soon.

This is my life.

I have to learn to live it the best I can.

That has been a huge revelation to me.  I think getting to that point has helped realize I need to attend some sort of support group.  In fact, my therapist has just such a group ready made.  I have known this but I have been avoiding it.

For the last fourteen years she has been running a free group for people with disabilities and chronic illness that meets every Friday at the JCC (Jewish Community Center).  She has invited me to join.

I kept thinking my chronic illness would go away.  Guess what?  It hasn’t.  I know in my heart of hearts I need to go to that group.

It is going to help.

But I have to take the next step and get myself there.

OY.

 

This has been one of “those” weeks.  I have been struggling with an infection.  I have a UTI (urinary tract  infection). For most ladies, this is fairly straight forward.  It is miserable for everyone but pretty easy to diagnose and cure.  Not for me, of course.  I am a Zebra, remember?  I look like a horse but I really am not just a horse.  I have weird stripes.  I can’t even go “neigh” properly.

Those of us in the CVID (Common Variable Immuno Disorder) world refer to ourselves as Zebras.  We all have different stripes.  Also, it comes from an old saying doctors are taught in medical school, “we you hear hoof beats, think horse.”  in other words most patients who have the same symptoms and will have the same course of cure…

However with us, the phrase goes, “when you hear hoof beats, think…. Zebra!” Zebra is the term doctors give patients who do not fit normal parameters.  We tend to not respond normally to tests and to complain a lot.  In general, we are sick and we cause a lot of trouble for doctors who are fond of curing people.  My hunch is the docs don’t like Zebras because they cannot fix us.

As a result, we often get blamed for being sick.  I know that sounds crazy but that is exactly how it is.  This week is a good example.  I ended up in ER on Sunday after five days of pain and nausea and feeling bad. The doctor got angry with me. He diagnosed my UTI but was so upset by my chart, which showed multiple visits for a mysterious gut problem, that he would not even discuss the UTI with me..  In the end I was treated as a problem child.  I was not given my prescriptions or exit orders or offered a wheelchair, just told to dress and leave. I had to call back to get my prescriptions.  Somehow, I had offended the system.  I think I might have tried to assert myself too much by explaining my issues.  When the doctor did not understand he wrote me off as a head case and drug seeking.  He got me out of there as soon as possible.

Since then, my infection has worsened.  My fever, which is never very high by normal standards is staying over 99.  This is important for me because my normal level is about 97.  Zebras have a hard time mounting much of a fever because we don’t have an immune system that fights when we get sick.  But, no one really gets that.  They just think we are nuts.

I had an ultrasound on my kidneys yesterday and I will see the nurse practitioner for my urologist today.  Maybe they will give me stronger meds.  I don’t know.  My motto now is: “expect nothing.”

Even though I am pretty sure I have a kidney infection, I cannot prove it.  My body does not tell all on a standard test.  I am a zebra.  Doctors don’t like Zebras.

I figure if I get sick enough someone will notice.  Until then, I will just trot along and feel like a zebra who got caught by a hippo while crossing a water source.  The hippo chewed my kidneys off and I feel funny but NO  PROBLEM…. I’m fine.

Just look away….

Hi there, So things are better with immunoglobulins!  I am definitely stronger.  I infused again on Wednesday, so five days out from the first infusion.  The backlash was noticeably smaller.  I am having fewer fevers and more energy.  It is exciting.

Along with this news comes a reality check.  My husband has sort of let our finances slip through his fingers.  We are in a pickle.  Most of it has to do with my medical bills.  Don’t you love the American medical system?  Here we are, arguing over the need for reform when I, who am on the most fortunate end of the system, am still screwed over by it.

What I mean is, I have good insurance and my yearly income is well above average and yet we are still drowning in copays.  Medical bills are eating us alive.

I am taking over the checkbook after 28 years of marriage.  Can I ‘fix’ the damage caused by my chronic health issues? No. But I can look them squarely in the eye and pay them off.

It is never good news when you have a chronic illness.  I  am so happy to be feeling better and yet I am paralyzed with the fear of needing more medical care. I am at a sort of impasse’.  I no longer feel like seeking new doctors and new cures.  I no longer go to the ER when I am in pain.  I just live through it.

I don’t want to spend the money on nothing and I don’t want to drag my family along for the ride.  It isn’t worth it.

There are no cures.  All I have is today and I will live it and do the that I can.

Does that sound depressing?  Really, it isn’t.  Last week was much, much worse. 🙂

 

Hi, sorry it has been a while.  I have been feeling too sick and too damned depressed to write.  It is like the well dried up and I have not had anything to say.  I have written a few essays but they are sad affairs.

After being off of my igg replacement therapy since the end of April, I finally got the go ahead to infuse yesterday. My new dr. wanted me to wait until my igg levels dipped low enough that she could prove to insurance or prove to herself (not sure) that I needed the therapy. After ten weeks of feeling like utter shit and having three infections, I won the low igg levels lottery.

I still had supplies on hand from before and the nurse said it was ok to go ahead and do my subcutaneous infusion.  I got so excited that I forgot to premedicate  myself with benedryl and tylenol.

The infusion was rough.  I reacted more than I had previously.  I was awake all night with pins and needles in every part of my body, pain and nausea.  So far this morning, I am better.  This medicine is such  a catch 22 for me.  It makes me well but the side effects are horrendous.  I just  wish I could find the perfect combo: pre meds, igg replacement brand and delivery (IV or Sub Q ) and lower the reactions. Oh well, it is a new day. 

I shall go forth and conquer!