Friday, July 13, 2012

Living with a Chronic Illness

Well, we finally made it to Friday! 

This post finds me with sore and bruised arms from the four IV's that needed to be put in my veins in the last two days.  I am a little loopy from the drugs that coursed through them, and feeling defeated and a little bit like a failure for feeling sorry for myself.

I know I have hinted at different chronic health problems but I wanted to share them tonight after the yucky day I have had.

Here is the story:
I did have neurosurgery in November for a blown disk in my neck.  I had my C5/C6 vertebrae fused and I will live for the rest of my life with a titanium rod and screws hopefully holding together the fake disk that was inserted.

That surgery was difficult, still is.  However, the beauty of a surgery like that is that you can feel better.  Everyday was a struggle but now eight months out I do feel better more days than not.

Yet, that is not where my health problems started.  

It started about five years ago with a blood test done by my primary care provider.  I hadn't been feeling well, unusually tired, fatigued, etc...what was discovered was that my iron stores were low.  It was discovered that I usually do not have any iron stores (ferritin) in my blood and if I do it is usually about a 2 or a 3.  This means every time I bleed I have no iron to replenish what was lost.

Now the strange thing.  Nothing brought it up.  Iron pills wrecked my digestive track and with that realization the doctors decided I was bleeding internally somewhere. 

Next came an onslaught of tests.  Lower GI, Upper GI, barrium, IV's with contrast, Endoscopy, Colonoscopy, pill swallow through.  The list goes on!  Good news...I'm not bleeding, bad news, no reason for my iron.

I had genetic testing done, more poked and prodded and then the idea.  Iron infusions!  I had one infusion and strangely started to get an allergic reaction.  Hot, my back ached, felt like my throat was scratchy.  The infusion center decided to outwit the allergic reaction with benadryl, steroids, and zantac/pepcid.  The infusion which should take at most three hours now takes seven.

I come out of the infusions feeling better though.  I had three rounds with three infusions each for a total of nine infusions.  Unfortunately, that last infusion ended with me in the ER on another IV with more Benadryl and steroids.

Forward six years I needed my very first cavity filled.  An hour after it was done I was in the ER with an IV of steroids from the Novocaine.  Now forward a few weeks later when the Doctors thought the pain in my neck was a pinched nerve.  I gladly took a cortisone shot in my neck to relieve the pain.  That day I had another allergic reaction and was in the ER.

While the doctors were waiting for my MRI results to come back from my neck I was prescribed motrin to relieve the pain.  About two weeks later Meridyth and I were back in the ER.  I needed another IV with more steroids and benadryl now they say from advil.  I am now allergic to that too.

At this point I am allergic to iron infusions, cortisone, Novocaine, and NSAIDS (Motrin, Advil, etc...), I am also allergic to oxycodone.  I am figuring at this point I am allergic to myself!

I had another allergic reaction after my surgery and have had maybe two more episodes since then all ending with an epi pen (They definitely hurt!) and an ER visit.

I had an iron infusion yesterday.  You might ask why after all of this, but the truth is I was hoping that if we premedicated before the infusion, but meds in my body through the IV during the infusion, and then tried the infusion I might be o.k.

I was actually excited and though the treatment took 7 hours I was actually feeling really good this morning. Except I noticed that I had some welts on my arms and the skin felt warm.  My energy level was up though so I took a benadryl.  The welts got worse.  I took another benadryl.  Three benadryl's later and crying on my part about letting my co workers down I was back in the infusion center with another IV dripping steroids through my vein so that my reaction would get better.

I wanted to try a different type of iron infusion because when you don't have iron in your blood and nothing brings it up you feel horrible.  I am tired, but not just tired from the everyday grind, I am the kind of tired where some days I don't think I can walk up the steps in our house to get to bed.  I love to live!  I love to travel and see new things and have fun, but I..Have...No...Energy.

On top of this...are you thinking there's more?!  There is!  I have horrible myalgias and neuropathy's.  At first it was thought it was left over from the neurosurgery but it's different.  I went to a rheumatologist who is pretty sure it is fibromyalgia.  Basically, it is just overactive nerves which cause a lot of pain to the point where even having a blanket on your skin or the water from the shower could make you cry.  The doc prescribed lyrica which was actually working really well until my mood changed.  I started to feel depressed.  Very, very depressed.  I stopped the medication and all of the pain came back.

Yet, I think the allergic reactions are the worse.  No matter how much I say I won't get scared, that I know what it is, I still get scared.  I get swollen, and mucous fills up my throat.  My legs and arms swell and get raised and red.  My skin looks like a tomato.  I feel like I can't breathe.  I know I must breathe but I can't.

So, this has been my life.  I am either so exhausted I can't do anything or I am in the hospital being treated for an allergic reaction.  If it is neither of of those I usually have ice packs on my legs and arms to help with the pain.  It is wearing me down, and wearing Meridyth down.

I am hopeful though.  Today was crappy but maybe tomorrow I with feel better.  Everyone teases me I need a doctor House because not one doctor can figure out how or if everything is connected.

However, I am grateful that it is not life threatening, I am grateful that my family rallies around me and picks me up from tons of doctors and hospitals, and everyday that Meridyth tells me she loves me makes me want to get better.

We want to have children, soon, and I want to be ready for that, so I need to fight through this to hopefully come out on the other side.

Now you know when I say I have had a bad week, or don't feel well, or am tired, you know that I was probably in the hospital, my arms hurt from the needles and horrible tape to hold the IVs on, and I have lots of medicine coursing though my brain either making me antsy and agitated, or tired and sad.

I do believe I have something to learn from this.  I'm not sure what it is yet, but I hope you will stay on this journey with me and keep looking at the cool things I find.

Have a great weekend!



No comments:

Post a Comment