Sick

I don’t even know how to start typing this blog entry.  As I sit here, it’s hard to find the words, or just type what I am feeling.  Numb.  That’s how I feel lately.  I was hoping that the antibiotics would start doing something, but its hard to say at this point if they at all have done anything.  I woke up this morning with a sore throat, and what feels like a low grade fever.  When I sat up in bed, my favorite friend pain came back.  It seems worse when I am either sitting, or standing.  Same places as usual, face, jaw, and neck.  It seems like it is getting harder and harder to get up out of bed as each day passes.  Not the kind of “I don’t wanna get out of bed” thing, but my body just feels…. tired.

 

As I sat at my computer, giving myself a lovenox shot, I just keep telling myself its going to get better.  At this point, I am basically lying to myself.  Giving myself false hope to which maybe, just maybe a doctor will listen for a change.  As I gave myself a shot, I was on hold trying to schedule an appointment with my new GP.  I need to go in and have him evaluate me, but instead, I was redirected to do a telehealth visit.  

 

I mean in all honesty, telehealth visits are sort of “ok” for some things, but for those few things, it’s kind of pointless.  I know COVID is nothing to fuck around with, but for me, it’s worth the risk to go out and see a doctor.  As I sat and explained things to him, I said the same things I’ve always said. 

Whats sort of nice is that I think he does care, but I think the distraction of COVID and probably the overwhelming case load he has started to take on probably doesn’t help.  We discussed what has worked in the past, he reassured me that there is something going on.  I know that I have been waiting to get these implants out, and its just a matter of limping me, or at least helping me get to that point where we can get them out, and I’m not on my ass again, or trapped in the hospital, or sitting at some random ER again.

 

As I sit here typing this my eyes feel so goddamned heavy.  I’ll admit, this has been absolutely exhausting trying to juggle everything.  As far as work is concerned, I am doing best-effort.  I just wish all these health issues would just go away so I can go back to “living” I guess.  My face just fucking hurts.  My jaw, and neck just ache.  My body just hurts.  

 

As the day has gone on, I feel sick.  It’s a feeling that I’ve grown well accustomed to feeling, and just sort of accept that “this is how its going to be”.  The thermometer shows me 99.6 F.  This means my body is definitely fighting somthing.  As I’ve noticed, my body used to read warmer than usual, but as of late, my normal body temp is 97 F.  My body definitely feels like it is at war with something.  From what I can tell, every SCIg infusion I do, makes it fight more and more.  I am not sure if this is the “norm” for CVID, or if this is something irregular.

 

As of last week, Immunoe was doing away with the Home Buy n’ Bill program, and I called Soleo to get me moved over to them for filling my prescriptions directly.  I did speak with someone there last week, but it feels like nothing was done.  I haven’t heard anything from anyone outside of hearing from my nurse about filling 1 last dose through Immunoe.  So today I called, and was told that my authorization is still pending, so I honestly have no fucking clue what the holdup is.  I just get the strange sense that I am being given the runaround.  From talking to another CVID patient of Immunoe, they sort of did the same thing with her, but she is on Medicare, which is a bit diff than having insurance.  So I don’t know what to believe.  All I know, is that I am out of Immuglobulin in my fridge, and I am concerned that they are just going to pull the rug out from underneath me, and I’ll be left with nothing, or the shitty choice of having to go in weekly for infusions.  If thats the case, I don’t know if this is really worth the effort anymore.

 

I mean I switched to SCIg so I could do it from home, without any “gating” factors.  But I guess what Immunoe wasn’t “profitable” anymore.  I don’t know.  Things as of late seem so backwards, upside down, and just plain weird.  The guy from Soleo said he will give me a call back tomorrow to make let me know whats going to be happening, but I have a feeling that insurance is just going to start fighting me tooth & nail from now on.  I’ll be honest, I have accepted the fact that I am now considered “Chronically Ill”.  I am sure now the roadblocks that I will now be facing will just detract and stop me from doing the things that I want to do, or accomplish.

 

I guess I will update this later this week whether or not what happens next….  Sorry if my blog has become uninformative and boring.  Kinda seems like the same thing over and over.  At least I have this here to remind myself what was going on week by week.  One thing I have noticed is that my memory doesn’t seem to be doing so great, but I would have to guess that all the medication I’m on is probably hampering that.