Today I will be receiving my Avastin shot for my POHS.  [I've obviously pre-written this post.]  Just wanted to remind you all that today is the day.  I may be absent for a little while, depending on how long it takes me to recover.  I tend to experience severe drowsiness && nausea for several days after my shots.  For my fellow POHS sufferers:  do you have the same experience with your Avastin shot?  I know my reaction to the shot is semi common, but I also know a lot of people have no reaction to it at all.

I will be doing a week by week update on the progress of my shot.  These have been very popular viewed posts in the past.  I want to offer support & info to other people with POHS.  There's not a lot out there for us.  

I've touched on myyy POHS before but I don't think I've fully talked about my condition.  My right eye has 100% central vision loss.  The scarring is too bad to come back from on it.  My left eye I'm working hard as hell to preserve.  It's the one I'm getting the shot in.  The POHS is active in that eye, and I'm doing everything I can to keep it from permanent vision loss.

Currently my vision in my right eye looks like this...

You can see that I have my peripheral vision && a slight spot in the middle that is clear.  Though that little spot provides no help in actually seeing anything.  This should give you a better idea of the severity of POHS, and obviously why I don't want my good eye to end up like this one.  I'd be severely vision impaired.  No longer would I be able to look directly at anything or anyone.  

Well there's a little bit of a peek into my syndrome.  For those of you that don't have POHS, this might help you understand a little bit more.  

*View ALL of my Presumed Ocular Histoplasmosis Syndrome posts*

dealing with a syndrome [good vibes only]

Dealing with a disease/syndrome/illness can be a veryyy trying time.  I've been living with POHS for several years, and only had my diagnosis for a little over a year.  It is incredibly difficult at times to stay positive during "flare ups".  POHS is an expensive syndrom and has no cure.  The main treatment available is an injection of medicine [avastin] into the eyeball.  The treatment can keep it under control for a few weeks or years... you just never know.  I've been incredibly fortunate so far to not have too many flare ups.  

I'm currently dealing with a flare up && will be getting my avastin injection this week.  It brings me down a little because the medicine makes me sick, and takes me out of commission for a little bit.  Not everyone reacts to the medicine the same.  I get incredibly lethargic for the next few days && have a moderate case of nausea.  

I've been dealing with guilt since the onset of my POHS.  I HATE having to spend so much money on this.  Obviously there is no choice here.  If I don't get the injections, I will develop scar tissue and eventually lose all central vision in my eye [my right eye is already in this state].  I hate that I have to pay for very expensive good insurance.  I hate that I have high out of pocket expenses for this syndrom.  I hate that I have to rely on someone to take to && from the doctor because I'm all eye patched up after the shots.  I hate that I feel so terrible for days afterwards.

.....this is the point I get to in my thoughts that I have to make myself STOP.  There is absolutely NOTHING I can do about this syndrome, except treat it && accept it.  Being angry or feeling guilty will not make it go away.  I'm stuck with POHS for life.  This is where I have to make a conscious decision to not allow the bad negativity to enter my brain.  Did I mention that POHS flare ups can be brought on by stress?  

I also have to remind myself to be grateful.  There are much worse things I could be dealing with.  I'm not trying to create a "woe is me" post here.  I'm being real.  I also want everyone else to know, that whatever you're dealing with, it's okay to be upset.  It's okay to be angry.  It's okay to be guilty.  You just have to recognize that you cannot allow those feelings to consume you.  Eventually, you have to step back and think positively.  Negativity will eat you alive.  

Good vibes only.  

Read more posts about my POHS:

Initial Diagnosis

2 days after Avastin #1

1 week after Avastin #1

2 weeks after Avastin #1

Dealing with POHS