Month: October 2014

I have been guilty of late. Guilty of telescoping my life down to my problems and worries.

I instinctively know this is wrong.  I have never liked thinking small.  It makes me depressed.

I have never liked it when my animals chase their tails for too long.  I want to help them out.  But, usually it’s too funny to stop.

But with me, it’s different.  If I get lost in chasing my own tail or the tails of those around me, everyone just gets crankier.

Suddenly it seems there is no way out; no way up.  We are all swirling together down the giant toilet bowl of life.

It takes a lot of work to stop that downward, sucking spiral.  I have to literally hit the brakes.

Last week it became blindingly apparent to me that something, some of the stress in our lives, had to go.  I did not know what or where or when but I knew I was cracking up.

I also knew that my cracking up and my husband’s cracking up and job loss was doing our son in.  He was fighting just to keep his head up.  He has been depressed, anxious, missing school, in the hospital, at the therapist and the psychiatrist, for weeks and weeks.  And, I have known, deep in my gut, that our stress was causing his.

That knowledge made me sick.

A family is a system, right?

Our system has been through hell the last few years.

I knew we had to make a big change.

Over the last months I have caught myself fantasizing about teaching my son at home.  I have been a teacher for over twenty years.  It is what I was born to do.

For the last three years, I have been sidelined by my health.

I kept asking myself, “could I, should I, homeschool?”

There have been lots and lots of voices saying “NO!”

These voices were worth listening to.  I didn’t want to give my son an easy out.  I didn’t want to overburden myself when I am already sick.  I didn’t want to possibly cheat my son out of any experiences he needs to grow and mature.

Finally, this last week, the voice in my head saying, “Do it, Do it, Do it! ” won.

I can do this.  We can do this.

I have a lot to offer him.  I realize I cannot offer all subjects so some will be taken online through University high school programs or tutoring.

Above all: There will be no more sobbing and screaming and pulling and yanking.

There will be: Peace. Interest. Intellectual Stimulation and Personal Growth.

I have the tools.  My son has the thirst for knowledge.  So far, he is happy as a clam with what we are doing.

I am not an easy teacher!

He has a five page research paper that started the day we decided to do this.  He has other assignments and responsibilities as well.

The goal is to love what we are learning.

My greatest hope is that we can travel and learn together.  He wants to see the Smithsonian and go to all the museums in NYC.  I am down for that!

I figure it is only a few precious years here.  He is already 15.  I am going to milk this thing for all it is worth.

It is a big place out there: We are going to explore it.

 

I really do.  I hate pricks; specifically of the needle kind.

Let me be clear, I am totally cool around needles and don’t have a problem in the world with doing my own infusions every week (which requires four small needles that I insert across my belly and tape down).  I have done home allergy shots over the years as well.  It was no biggie.

I have never minded blood draws or IV starts or any of it.  I am always;  Ms. Oh-So-Cheerful when the nurses are poking around to get at an IV started, even when they have to do multiple sticks.

But I think I have finally cracked.  I can’t take it anymore.  Needles are what they are: they are little, pointy pricks. They are cruel  and they make you bleed.

(I don’t hate all pricks, but I won’t draw that distinction here.)

When I was on IVIG (Intravenous Immunoglobulin )  every month, the hunt for a vein good enough for eight hours of medicine was a tough one and I know now that some of the medicines that were  put in my monthly IV’s were vein killers.  I took a lot of Benedryl and Promathazine  right in the IV, undiluted, because that is what my nurses did.  Finally it became too difficult, so I switched to the subcutaneous method of delivery I use now. The idea was that my veins could “rest” and would somehow be fine.

I had begged my doctor to give me a port a cath, which is a central intravenous line that is placed by a surgeon and has an open outlet so you can have access to a vein quite easily.  Many people with my disease get a port but my immunologist at the time refused to let any of his patients to get ports because of his concern about infection risk. My rheumatologist is in agreement and says that people with my disease spectrum almost always end up with infected ports.  This is really scary because the actual vein they use runs next to your heart.  I understand their perspective and have put his off basically as long as I could.

However, I have just come to the road less traveled.  I can no longer provide blood for lab work.  Before a minor surgical procedure this week, it took two hours, nine sticks and five people to get an IV to stay in.  The rest of them that were successful, blew out in seconds.

During my last ER visit, I waiting four hours for an IV and was finally given one through the groin area by the doctor.  It worked but was kind of dramatic.

I cannot count on my veins to cooperate in an emergency.  I will have to have a pic line; which is an IV placed along the heart (just like the port but temporary) or another one through the groin.

I feel like I have been assaulted.  I feel like a piece of meat.  I feel like a freak.

I feel like the patient they all go outside the door to whisper about.

I have to convey this to my doctor.  It is time I got a port.  I cannot do this anymore.

I have had enough pricks.

I hate pricks.

” I think it is possible that most of your issues are from the neck up.”

This is what the gastroenterologist told me the other day after surgery. Generally, he has been a nice and well balanced guy.  However, he has been unable to fix my problem.  I must say, he has been more resourceful than most but  is obviously frustrated, so thus his clinical conclusion, “you are crazy.”

I don’t appreciate this.  I also know better. I was told I was crazy for twenty years before I was diagnosed with CVID.  After having three sinus surgeries in a period of five years and being told a. I was a princess.  and b. (by another doctor) that I had an incurable infection. and c. I needed an immunologist but there wasn’t one in Austin.  I was finally diagnosed with low to non-existent immunoglobulins and got better with treatment.  The jury is still out on whether to call it CVID or SCID.  I don’t know or care.  The stuff works. I no longer have sinus infections or pneumonia.

I do, however, have the disease progression of a person with a primary immune disease.  That is, all the other parts of me are falling apart.  In 2011, I was diagnosed with a connective tissue disorder and since then I have been coming apart at the seams with a whole menu of things.  This is not unusual when taken in the context of people with primary immune disease or CVID.  But, very few doctors know how to treat a patient with this underlying condition or how it even works.  Even the best doctors don’t know much because it never, ever, follows a straight course.  It is different in every individual.  Instead, it is mostly shrugged off as ‘one of those things crazy people get,’ or ‘not as bad as she says’.

I have had upper right quadrant gastric pain on and off but mostly on for three years.  It began when I had an allergic reaction to the drug Cymbalta.  Cymbalta tried to eat my liver and put me in the hospital with sky high liver enzymes.  Since then, I have been told I have a fatty liver and fatty pancreas and yada, yada, yada. The assumption is: why wouldn’t those parts of me be fatty?  I am, after all, fat.

Here is the catch… I never had those issues before the Cymbalta incident.  Something happened to me then.  I know that.

However, that is a bygone.

Just like my gallbladder;  That is also a bygone.  I had it out when I was 35.

Since this past January, I have had five ERCP procedures.  These are attempts to open up my biliary duct and pancreas and let them drain better.  There are huge risks associated with these procedures.  However, I have been  desperate enough to try it anyway.  Several of them have worked well.  During the ERCP, the surgeon places a stent either in the biliary duct or pancreas and the stent lets the bile flow freely.  Apparently, each time, I have had a back up of ‘gunk.’  Also, my biliary tree is ‘tortuous’ or not well formed, so it is difficult for it to work.  This is all per my understanding.

Yet, despite all of this, when the stents come out, as they must, I have the problem again and again. I have tried diet and exercise and YES! I see a therapist and a psychiatrist and I do all I can to keep my head on straight. Both of the mental health professionals I see have confirmed I am no crazier than I should be.

My doctor’s last little ray of hope is that I have a gallstone that is tucked away in a duct no one can get an  image of and that is causing all of this.  Who knows?

All I know is I had the surgery again on Thursday.  The doctor saw me on Friday in the hospital and repeated his latest idea for the fifth or sixth time that, “it is from the head up,” and then released me.

I feel belittled and sick and in pain. The pain is worse today and I should probably go get an x-ray to make sure the effing stent has not migrated, which is a real danger.  However, I think I would rather not go.

I don’t want to spend the money.  I don’t want to get poked nine times to get an IV in and I don’t want to be told I am crazy.

Oh, and God forbid I have an anxiety attack as I did last Thursday in ER.  The doctor used that as part of his ammunition to prove his point about the crazies.

I am tired.  I am tired of being in pain and being alone in pain and being told I am crazy.

If this sounds like one, long, whine. I apologize.  Please skip it.  Don’t read it.  Unread it if you need to.  NO comments necessary.