dealing with a syndrome [good vibes only]

Tuesday, July 15, 2014

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

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  1. Emilee, I was diagnosed a bit more than 22 years ago, when I was about 20 years old. At that time there were no Avastin injections (and I actually am not familiar with them). I had to have laser surgery in both eyes, with no idea what would happen... if the bleeding would keep happening, or if it would stop. Thankfully, it stopped after one surgery in each eye and I've had no recurrence yet. Over time, my eyes have accommodated well and my deficit is really not very noticeable. I know it can feel really frustrating at times, and scary, but do stay positive the best you can because things may very well not worsen. Hoping all the best for you and your eyeballs. :)

  2. This is interesting because they don't patch my eye after injections and I don't feel sick OR tired. I guess I dodged that bullet at least.


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