Thursday, October 17, 2013

I Guess You Are Wondering...

I know, it has been forever since I blogged.  I do have my reasons, but just have not felt like sharing.  I love this blog and I feel like when I am depressed it carries through it, so I just don't blog.  However, I miss blogging - but like I said, I have my reasons... and I guess it is time to share.

Right now we are going through a transition time - and we don't yet know what we are transitioning to or how it will affect us.  Let me explain...

I have been ill for a very long time. Most will remember my side pain - since March of 2009 I have suffered with the upper left side hurting.  It started after a very bad bout of food poisoning I got in Korea and though I went to brazzions of Drs, they could not seem to find the source of it.  But I assure you, it bothered me.

My entire life I have been plagued with sinus infections, bronchitis and gut troubles of one form or another.  A few months ago, an ENT (Ears, Nose and Throat) Dr referred me to an allergy clinic.  The Dr he referred me to was an Immunologist.  

From there it went downhill... she has since diagnosed me with some form of immunodeficiency... though she is having trouble narrowing down exactly what form - as it seems to be rare.  However, she does think it is some form of Common Variable Immunodeficiency - specifically a t-cell deficiency - of which she says I have none of most of the t-cells that recognize infection.  Symptoms of this is - get this - sinus and lung infections and gut problems.   It is very difficult to find a link on CVID that explains it in layman's terms... so if you want to take a Google gander, go for it - I just linked to someone trying to explain in simple terms *I* could understand.

Anyway, the diagnosing Dr has referred me to yet another Dr whom I have yet to see, and I will have to have yet another Dr (an internist) to work with (the Dr I have yet to see) to treat me - a general practitioner will not be able to.  The symptoms of what I have appear to be other things and a GP cannot distinguish that, since they are not specialist in immune problems. 


Confused?  Yeah, now you know what I have been trying to wrap my mind around and come to terms with.  They do think this is genetic, but my body was able to cope until the food poisoning - and when that happened it threw in the towel and went on vacation... or something like that... hence the reason my health has been going downhill since 2009.

Right now, in addition to the sinus crap and gut pain, I am suffering with a very painful swelling of the hands and fingers, elbows and now shoulders; so typing, working or doing much of anything is extremely painful.  I am at the point of why bother?  The house is the pits, supper is often pulled out of the freezer and then 'ditto' of freezer foods.  I seldom have the energy to cook, clean, sew, or frankly, give a damn.  I never liked shopping so that is out of the question... I know I have to get over that, and usually I can 'pull up my boot straps' and do just that - but I just do not have it in me anymore.  Frankly, my dear, as I said, I don't give a damn.  And that scares the hello out of me.

Steve is such a patient and wonderful man.  I have no idea how he has tolerated me all these years, but he is so caring, easy going, forgiving and concerned - and I love him for that.  It hurts me to think what I am putting him through, but I know I have no control over it.  My yips of pain are now a common occurrence and though I try to muffle them, they usually happen anyway.  I 'muster' as much as I can, but lately even mustering is a dream.  Now I just shake my head and apologize - I guess for even living - because I certainly seem to have no control over this vacationing body. I at least wish it had vacationed some place less painful... and much less expensive.  Steve would be a multimillionaire if he hadn't had to pay all my medical bills that he has had to pay since we married...and we seem to be getting deeper into the medical oblivion. 

I *need* and *want* to get a job, but I have to feel like getting out of the recliner first...and instead I just keep sinking deeper into it.

Tomorrow, I made an appointment with a GP *gasp* and am going in to see if I can get something for depression/anxiety.  Maybe that will help until I can get into the other specialist. Not sure what is going on there... I just got a call from even a different Dr who says they will see me on Halloween day.  Skeery.  Maybe this Dr is a good thing.  At this point all I can do is roll my eyes.


So I patiently wait... and yes, worry.  There is no cure for an immune deficiency - and only temporary fixes like antibiotics to try to stave off the infections.  Ultimately, it will do me in I guess... or at least that is what they say.  I better find those boot straps!




And that about catches you up on me.  I know, a pity party and I am sorry for that.  I guess I needed to share.  Maybe now I can just move on.  Or better yet, curl up in my recliner now that I have posted on my blog.  Finally.  Promise I will not be so deep and dark next time...

Fall is here.  I am freezing!  Colors should be coming soon - right?  Moving on... 


1 comment:

Leone Fabre said...

oh Euvah ..... I feel for you. I know how long this has been going on and I know how you have suffered. Well a bit anyway.

It is terrible when life throws these issues at you, sometimes you feel you will never be well again. Hang in there dear friend and be rest assured there are many people praying for your recovery.

much love from us 'down unda'. xx