Body Blah

I wonder if anyone else with chronic illness has this problem.  I am so frustrated with the way I look.  This is nothing new with me.  I have had body image issues and eating disorder issues for most of my life.  I was just sort of hoping at this point I could let some of it go. After all, I should be glad for the days when I can actually get up and move, much the less worry about my weight or my lack of muscle tone.

But I do.

I always, always, feel I am doing something wrong.

Right now I am taking a tiny dose of prednisone every day just to keep going.  I think it is playing havoc with my appetite. I want OFF the prednisone but without it the fatigue and pain make it tough to function at all.  Is there a compromise here?  I don’t know.  Until I get my infusions back, I don’t know what to do.

I need to follow my eating plan.

I need to go to the gym.

I feel a failure.

I am sabotaging myself in so many ways and yet I cannot seem to forgive myself.

Does anyone out there have this problem or is it just me?

Flare Scare

This is just a quick note as I am about to leave and go haul kids around all afternoon.

I seem to be having a flare.  ” What is a flare?” you ask.  A flare is when my body starts attacking itself.  My autoimmune system starts going wacky. One of the biggest signs is that I have incredible itching.  My itching is usually confined to my arms.  Last night it was so bad that I could not sleep.  I took enough benedryl to kill a horse but it did not help at all.  The only relief I got was from wet rags draped over my arms.  Cortisone creams (prescription strength) are also ineffective.

The only thing that helps keep me from going entirely crazy is the knowledge that I am not alone.  All of the sites I read where there are others like me; with Mixed Connective Tissue Disease, everyone talks about ‘the itchies.’  The itchies are a bit different for each of us but they are always incurable it seems and they come and go.  I have noticed they are at their worst when some other part of me is not working too well.

For instance, I am having indigestion from HELL.  When I try to take my vitamins and other medications, it hurts.  The pain in my chest and back is excruciating.  Also, the fatigue and the aches are back.

My personal opinion is that all of this stuff is back in full force because I cannot take my igg infusion right now.  In other words, IT IS ALL RELATED.

I am praying that the dr. I plan to see in Houston in June will really ‘get’ the inter relationships of it all and can help me put more puzzle pieces together.

I desperately need that help.

Ok, onward through the fog….



Fall of 2012

Let me begin with the obvious here: nurses are people. They are varied and variable and they all have good days and bad.  But, as a general rule, they are unbelievably competent, patient and caring people.  I admire them.  I am a fangrl.

First, some very special nurses: my infusion ladies. For most of the last eight years I have been getting infused at one of the local hospitals in their outpatient infusion room:  It isn’t a scary place.  It has lots of recliners and a television and plenty of blankets and pillows.  There are even curtains for privacy when you need it. The nurses who work there are like dear friends who know my innermost secrets: they hold my life in their hands once a month. They watch out for any changes in my blood pressure and do whatever they can to make what is a difficult process for me, go smoothly.

I really cannot say enough what these ladies mean to me.  I look forward to seeing them and know I will be okay, no matter what happens, as long as they are there.

ER nurses are another category I have come to know well.  They have a tough job.  They need to be everywhere at once.  Patients have no patience when they are in the ER.  Everyone is having an emergency, after all.  But, each one has to be prioritized and sometimes it is impossible to please anyone.  I don’t know how they do it.  Sometimes they get pretty hardened.  Sometimes they are there without you even asking. I have come to know the signs of an ER nurse.  If he/she is overwhelmed/tired they won’t bother to hand you the call button and sort of leave hoping you won’t ask for much.  If they are fresh on duty or the E.R. is slow, they may just stop in to check on you.  But that almost never happens.  I just try to remember they are people, at work, and that I am not the only patient. It’s hard when you feel like you are falling apart but I don’t know any other way.  I say ‘thank you’ a lot and I mean it.

Floor nurses in the hospital juggle a ton of information.  Doctors are only there for a brief time once a day—if that—per patient.  They rest of it has to be done at the computer station and through pharmacy.  Interaction with the patient is every two hours for the nurse every one hour for the aide. They take your vitals and check in on you.  Usually medications, like pain meds, are every four hours. The nurse has to record everything in the computer in your room.  Each time she gives you a medication, she gets the bar code off of your hospital bracelet and then the vial before she can fill the syringe.  There is a lot of paper work involved.

Usually these nurses are so competent that nothing can ruffle them.  If something does upset them, you know it is bad.  Every once in a while you get one who is just tired of being there. You can tell.  You are just annoying no matter what you say or ask for.

There is nothing you can do about that.

Keep your eyes and ears open, some of these nurses work back to back shifts of crazy hours and start to make mistakes.  They are human and I don’t blame them.

I do blame a system that lets them or makes them work those hours.  It is not ok.

Nurses are the heart and soul of medical care. Without them, there would be nothing.  They should be the highest paid and respected parts in the whole system.

Post Script: May 10, 2013


I no longer go the hospital for infusion days.  I have/had switched to home infusions that are done sub q (subcutaneously) and can be done safely at home.

Unfortunately, I have spent more time in the hospital.  Everything I wrote above is true.  Nurses are heroes and heroines. They should be allowed to wear capes and shiny, reflective tights.

Last week I was in the hospital for four nights and for all that time I had only one mediocre nurse.  I think that is pretty outstanding.

Here I Sits: Captured

This is just a quickie to say hello.  I don’t have the energy or the brains to write coherently.   I am in the hospital with a suspected case of Aseptic Meningitis.  In other words, my body did not take well to my home igg infusion of the subcutaneous medicine. This is the infusion I have been so proud I am able to take because the IV versions were making me too sick:(

I have had many reactions ever since I have tried to take igg (immunoglobulin) replacement therapy . The nasty part is that I desperately need the stuff.  My body does not produce enough iggs  and in some cases my body doesn’t produce it at all.  This problem, called Primary Immune Dysfunction or Hypogammaglobulemia, is at the root of all my health problems.Different people have deficiencies across the spectrum.  According to the textbook, my problem is an easy one.  However,  I have begun to believe that this a stack of cards and that once one fell with me the momentum just increased and   Or at least that is what I have come to understand and believe.

My body is missing some of its natural immune system and has literally turned on itself looking for answers.  The plasma product I infuse (Igg or IVIG) replaces my crappy immunoglobulins with those of healthy people.  In fact, it takes 25 thousand people to make up a batch of the medication I infuse.  It is very complicated.  When I have a reaction, one of several things can go wrong: 1. My body recognized the new, healthy cells (?) getting pumped in and says, “Yo, bitch! These aren’t ours!  Get them out of here! Attack!”  2.Or, It could be,the suspension the product is mixed with is causing me to react (possible but not probable since it seems to happen with all of the brands after a while).  3. I am a space alien and human blood products are just not compatible with my alien blood.

Personally, I am voting for number 3.

In any case, this happened to me in early December and now here I am again.  The doctor wants to take away my goodies (infusions) all together.  I can see that from his perspective that would seem logical.  But, he seems to be wearing spectacles that give him a very different view from mine.  I know that without the medication at all, I feel weak, painful and half dead.  I get all kinds of infections and feel like I will die pretty quickly.

So, what to do?

I am going to go get another opinion.  That’s all I know to do.  If the next doc says to get off of the med and stay off then maybe I will.  I don’t know.  I cannot face that thought right now.  I am doing good just to write this and think it through.

Perhaps I should start trying to find my space ship and ‘phone home.’  I can’t just sit here eating Reese’s Pieces. I need to get to a place where I fit in and my body isn’t constantly in rebellion and making me miserable.  Hey, I could turn myself in at Area 51 (that is the alien one, right?).

Maybe they have enough specimens of my race to fix me there.

Okay, I am devolving really rapidly here.  I think I will have mercy on anyone crazy enough to read this and stop.