Month: July 2013

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!