Fever, Pain, and Fatigue OH MY!!!!

My three most favorite non-favorite friends have been basically hanging out for a year now.  Feels like I’m 80.  What can I say, I am just wiped out all the time.  I sleep, but feels like I got like an hour.  I’m just exhausted.  My body has put up with this for way too long, and I think the “wear and tear” is starting to show through.  I’m starting to get slower at everything.  Getting up is getting much harder as the days go by.  This fatigue is just unreal.  The only way I can describe it best, is doing a real marathon, or doing the most strenuous exercise possible, the feeling afterwards.  Now take that, and multiply it by 10.  That’s how I feel, all the time.  It’s pretty frustrating when you are this young, and you can barely move.  It gives a different perspective on things.

I start to think back to years ago today.  Flashbacks.  To “The Good Times”.  Back when I was “younger”.  Jesus I was really stupid.  I mostly think about how I felt in general.  What it’s like to feel “normal”.  I can’t say for certain the last time I truly remember that.

Back to the topic at hand.  I’ve noticed lately that the fever has been getting slowly worse.  It started out as a low grade 98.9-99.4F temp back in February.  Every night.  Now?  It’s ranging up to 99.6-100.5F.  Just constant.  Yet, I just take Advil constantly.  It keeps it down, but the burning eyes feeling doesn’t go away.  Today I’ve started to notice just constant sweating.  Great add another fun symptom to the pile of what I’ve been going through.  The chills are the worst.  Constantly coming, and going.

Pain.  Most of it is just indescribable.  Remember back when your mom would ask you were it hurts?  Or the school nurse?  For me it’s everything.  It’s an extremely long list.  Why not just go over it! 😀
/ugh

I don’t even know where to begin, I guess my head has got to be the #1 spot.  The osteoma in my head has blocked the only exit point in my left sinus.  With that, that has caused a myriad of pain in my head.  The pressure changes in my head are the worst.  Shifting from front to back, back to front, left to right, right to left…  constantly.  I have these strange “electrical” feelings in my skull, not sure what that is, but that’s the only way I can describe it.  The tumor itself hurts.  I can feel it from time to time when I move, sneeze.  Fred needs to get evicted.  My ears hurt, constantly.  It’s mostly a pressure feeling.

My mouth…  The amount of trauma my mouth has gone through to this point has been pretty extensive.  I’ve lost 9 teeth so far.  I never thought that this would be part of the solution, just yanking teeth.  But you know what, something had to happen.  The mucoceles (fancy word for cysts) that were in my lower lip were very painful.  They burned.  I resisted the urge to remove them myself.  After having them removed, my lip has not been the same.  Lately, where they were removed (roughly an inch and a half scar), it’s been extremely irritated.  I started re-applying the oral steroids to it, seems to help.  My jaw just aches.  Constantly.  Mostly on the left side near the TMJ.  Which I need to constantly have it put back in (I need to go in soon).  I’ve also just lately started to experience a difference in the muscles below my tongue.  Not sure if it’s related to the trauma, TMJ, infection, or potentially something new starting.

From the base of the skull, down the left side of my neck has got to be the #2.  Sitting up / standing for more than 2 hours just makes the pain worse.  Pulsing.  Stabbing.  It just hurts.  The vicodin helps, but doesn’t get rid of it.  The only 2 things that help, is my heating pad, and my wifes’ awesome massages.  It brings me calm.  It helps me relax.  The pain is always a constant.  Previous MRI/CT’s revealed that I have the following cervical spinal issues:

• C3/C4 – Right Foraminal Stenosis / Mild cervical spodylosis
• C5/C6 – Bilateral facet arthropathy
• C6/C7 – Right paracebtral disc osteophyte complex

I’m sure at some point, I’ll have to rope in a neurosurgeon to fix the above problems, but I think for now, we can put that on the back burner.

Joint / body pains.  God.  Everywhere.  Everything hurts.  I’m sure that this is some sort of Autoimmune response due to my CVID.  A lot of the things I read from medical studies, and journals, is that Autoimmunity is common with CVID.  The rashes I get are also most likely related to it as well.  Inflammation is not fun to deal with.  At all.  Along with that I’ve noticed strange heart palpitations lately.  Not very prominent, but I know that they are there.  I’ve been trying to capture them with the watch, which I think I may have caught 1 or 2 of them, but I’m not sure.  My ENT office did refer me out to a cardiologist to take a look at my heart after the septic issues.  Again, this all could be related to the CVID.

Aside from that, the tingling feet & hands continue.  That’s what is known as peripheral neuropathy.  A term most medical doctors use when they have no idea what the problem is.  Either that or neuralgia.

Not within the pain category, but my vision has started to change.  I am starting to see more and more floaters, and visual artifacts more specific to the left side than the right.  I’ve also started having tearing occur more frequently (I’m emotional, not THAT emotional).  My left eye has also started to become more blurry / foggy during certain times.  The most irritating thing of them all, it’s constantly twitching now.  I’m sure that the tumor has started to invade the ocular cavity more, and this is all apart of the osteoma.

Hopefully this upcoming IVIg infusion will start to resolve some of these issues.  I am not expecting it to be the golden fix, and it’s not going to just take 1 dose.  It’s going to take time.  As well as removing the tumor from my head, and clearing out my sinuses completely (a good roto rootering).

I met up with my Oral Surgeon today.  He’s always awesome to see.  He was running unusually late today.  I sat in the chair waiting for almost an hour for him to come take a look.  My current list of concerns is the mucocele removal sites, overall healing of the extracted teeth, and a new issue that I’ve noticed, the duct which the Parotid gland attaches to is inflamed, and much larger than the right side.  As expected, he wants my ENT to dig deeper into it.  It could be the sinus compounding the issue.  Otherwise, from what he told me, things look good.  So thats a positive.

I will honestly say that the anxiety is starting to build up to Thursday.  I started taking my premeds today.  10mg of Zyrtec, and 150mg of Zantac daily.  I need to continue this until the 3rd day after my infusion.  Tomorrow afternoon, I have to give up caffeine, and start drinking more fluids.  Part of the recommendations they said anything with electrolytes is a plus, so either Gatorade, Coconut water will be beneficial.  I am hoping that my infusion goes issue free, with minimal to no side effects.  I am sure that the fatigue will get worse before it gets better.