Tuesday, August 20, 2013

Feeling Hopeless

I've had a few really great days over the summer.  They make me hopeful that the future could be brighter.

But right now, I feel completely hopeless.  I have been having frequent spells of low blood pressure that do not get better when I lie down.  My go-to medication for hypotension is Midodrine.  The last couple times, Midodrine actually made me worse.  It caused my heart rate to drop dangerously low, in addition to low blood pressure, which causes chest pains.  Now, I have nothing to go to when my blood pressure drops.  The spells usually come on after exercise or some type of activity.  They're usually later in the day, which is unusual for my POTS.  They aren't necessarily POTS-related.  I have lost consciousness quite a few times in the last week.  And it's not like you lose consciousness and then wake up dazed and confused a few seconds later.  These are prolonged episodes of unconciousness or near-unconsciousness.

If my sleep is not restful enough or my body is fighting any kind of infection, I can be in a stupor the entire day.

For this kind of low blood pressure, Florinef is commonly prescribed.  Unfortunately, it raises intracranial pressure and causes me massive headaches.

The only thing that can help me is Thermotabs and fluids.  All day, every day, I chug water.  For every 10 ounces of water, I take another Thermotab (buffered salt tablet).  This is about 12 a day right now.  Yes, I drink at least 120 ounces of water a day.  And over 2000 mg of sodium from pills.  It is all I have right now.

I contacted a nurse at Dr. Grubb's office.  She basically told me to not worry about it.  She reminded me that I have a chronic condition (Thanks!).  She said that IV fluids are not a good long term solution, especially in someone with EDS, cause your veins will all get blown.  She said to only go to the ER if I fall and hurt myself.  I don't, it comes on gradually. So, we just have to accept the spells of unconsciousness.

I cannot take anything else for my depression/anxiety, because I have had serotonin syndrome.  That's a dangerous, potentially fatal condition, so you really can't mess with it.

I am supposed to be raising a puppy and starting to teach piano lessons again.  I don't know when I'll be able to do that, because my condition is so unpredictable.  I don't want to turn away potential students that are inquiring about lessons, but I don't know what else to do.  We clearly need the money, but I cannot commit to anything in my current state.

I know that the overall lesson here is patience.  I know that my condition has highs and lows, and 5 months out of surgery, it should still be mostly lows for someone like me.  I just don't see the light at the end of the tunnel right now.  I have no idea how much better I will get, or how long it will take to get better.  This could be it.  I want to participate in my life, not just endure it.  And I want to be a better wife, family member, and friend.  I just have nothing to give right now.  The only thing I know that could help me get to that better state of health is exercise, but exercise makes me pass out.  I just can't stand being stuck like this.  I can't stand feeling so sick and with such a low level of functioning and a low level of consciousness.

It's really hard when your husband has to check and see if you're still breathing, because you look dead and are completely non-responsive.  And it's hard that no one can help me.  When I'm barely conscious, there's just nothing to do anymore.

These low blood pressure spells could potentially be a mast cell activation reaction, but I'm seriously getting nowhere with that diagnosis.

I still don't have a local doctor due to an insurance problem.  Not like some random PCP would have any idea what to do with me.  There is no help.  Just deal with it.

Sorry for writing when I'm so upset.  I know I'll get past this feeling.  I just needed to reach out a bit.  I know someone reading will relate to these feelings...and others will probably think I'm just a depressed nutcase that should get some therapy.  But in reality, these are just the ups and downs of living with chronic health problems.