Sunday, October 28, 2012

Everything Looks Normal From The Outside

As I sit and write this, I did tell my husband I wanted to do this. Why?? Because we look like a normal family with everything put together and all our ducks in a row. However, nothing could be farther from the truth, we put up a good front, but the truth is, Geoff, my husband has Coccidioidomycosis or Valley Fever for those of us who don't read Klingon. I included the "medical" definition as to confuse everybody just a little bit more.
Coccidioidomycosis; immitis resides in the soil in certain parts of the southwestern United States, northern Mexico, and parts of Central and South America.[4] It is dormant during long dry spells, then develops as a mold with long filaments that break off into airborne spores when the rains come. The spores, known as arthroconidia, are swept into the air by disruption of the soil, such as during construction, farming, or an earthquake.[5]
Infection is caused by inhalation of the particles. The disease is not transmitted from person to person. The infection ordinarily resolves leaving the patient with a specific immunity to re-infection.[6]C. immitis is a dimorphic saprophytic organism that grows as a mycelium in the soil and produces a spherule form in the host organism.

Did ya get all that, me neither, truth is, I had to look it up from several websites before I even half understood what the hell was going on with my husband.
But I'm getting ahead of myself, lets jump back to when this all started.

Rewind to early August 2011, Geoff gets a really bad cough and we start the normal round of self medicating at home, couch syrup, cough drops, yadda, yadda, yadda. Anyway, he says nothing about feeling like crap and goes to work each day because around this time my Dad's health is getting worse, so not wanting to add to it or send my stress level through the roof, he keeps how he really feels inside, No bueno.
About a month goes by and Geoff goes to the Dr. who treats him for pneumonia, Yea!, Geoff will be getting better, Not!
On September 21st 2011, my Dad passed away, I  was heartbroken and I just lost one of my best friends.
About 2 weeks later, Geoff comes home from work and can't breath, so I take him to the local ER, they still don't know what is going on and admit him, only they don't put him into a normal room, nooo way, they stick him in a clean room, where everybody who goes in has to wear a mask and a cute (bright yellow) paper gown. (really!? because everybody knows that if he has some super cootie it will never get through that paper robe.)
After about 3-4 days in the clean room, they release him with a diagnosis of lung cancer, oh yeah, we were in shock too. Come to find out that a newbie nurse filled out his discharge papers and had no idea what the hell she was doing, stupid girl. They changed his papers to possible valley fever and referred him to a specialist in the area, so a few dozen blood tests and chest x-rays later, voila, valley fever it is.
So in between this time, Geoff loses his job because he didn't have enough sick time in with the company, but they did say when he is 100% he has a job waiting (yea!).
We were living in a 2000 square foot house, 4 bedrooms 3 baths a yard. And we were down to 1 income and started to feel the pressure, we dipped into our savings to stay a float and sold everything we could to get by, in the end, we had to move to a 2 bedroom apartment and convert what should have been our living room into our youngest son's bedroom, he likes it, it like his own man cave and he has the biggest area in the apartment.
The reason I started this is because we went from having it all to nothing in about 3 months. Geoff is in constant pain  and will never really let on how he feels, and before you ask, yes, he did apply for SSDI and was denied, the main reason was he's not sick enough. Really, not sick enough?! He's on enough pain meds to knock out a small army, has to do 3-4 breathing treatments a day and sleeps all day most days because it lessens the pain. But SSDI says that somewhere out there is a job for him, someone who will take the risk of hiring someone who is on prescription pain killers and can only function for about 2 hours at a time before he gets winded and has to take a nap will hire him.
The funny thing is, we both worked with a girl who's husband was on SSDI for being shot in a drive by that he was involved in. So because he walks with a limp and has leg pain he is qualified. 
I know a lady that claims to have back pain and is on SSDI, but has no trouble carrying a 5 gallon water jug.

The Dr's said that they will not release him to go back to work for at least another year, it's already been a year. Awesome.
I had to sit down and vent, because 1. I will explode if I don't and 2. We can not be the only family that has gone or is going through this.
I love my husband and I only want to see him get better and go back to normal.  And I know he feels bad, he has wrote on his facebook page about it, these are his words...

"I'm still awake, partially because of my frustration of yet another doctor who knows next to nothing about Valley Fever, but mostly because of the itching of this new rash, and the pain remaining in my lungs after 3 morphine injections, 1 pain pill, and 2 tramadol tonight. I got home about 2 hours ago from yet another "fun-filled" trip to the emergency room. I told the er doctor from the beginning that I had been battling severe VF for nearly a year, but after several blood tests, a CT scan, and the aforementioned 3 morphine injections, he still thought it was a good idea to send me home after telling me he had no idea why I was in such excruciating pain in my lungs. He sent me home with nothing close to an explanation of why I felt so bad and was in so much pain, with a prescription for 6 pain pills, and instructions to follow up with my primary care doctor. I had to go to the ER after trying to avoid it all day; I had excruciating pain in my lungs, an aching body, trouble breathing, a rash all over that I've had for the last several days, and a terrible headache and stiff and sore neck which I've also had for the past several days. But the ER doctor couldn't tell me anything, although it was severe enough for 3 morphine injections in a 4 hour period. I am just so frustrated by everything associated with Valley Fever; the doctors who know so little about this disease(even in Phoenix AZ), the constant pain in my lungs and entire body, these new symptoms of a rash and headache/stiff and sore neck, the general feeling of constant exhaustion which keeps me asleep 18 or more hours a day, not feeling as "sharp" as I normally was, and not having been able to work because of this illness. I'm sure the stress of not being able to work to provide for my family is making my symptoms even worse. After I lost my job because I couldn't work when I contracted Valley Fever, we were forced to move our family of 4 from a 4 bedroom house into a 2 bedroom apartment. We have had to sell nearly everything of value that we had in order to keep up with the bills, and now we're barely scraping by on my wife's income. I wish I could go back to work. I hate having to lie in bed all day, but unfortunately I don't have much of a choice about it; I just don't have the energy to get out of bed most days because of the fatigue and pain associated with this stupid illness. I would love to go back to work, but it's kind of difficult to find an employer understanding enough to work around me being in bed 18 or more hours a day most days, or sympathetic enough to understand that I need to lie down for a few hours after even the simplest of things I used to be able to do all day long before contracting VF. On one of my few "good days", which I define as only feeling moderate, yet constant pain in my lungs and muscles/joints (with medication), and having slightly more energy than the feeling of complete exhaustion which I feel almost every day, I might feel decent enough for something as simple as walking our 2 small dogs around our apartment building (less than 100 yards). Unfortunately, after walking the dogs, even for such a short distance and on level ground, I feel so exhausted that I have to lie back down and sleep for at least 2 hours, if not the remainder of the day. Now if only I could find an employer willing to work with those limitations, oh, and the fact that I have to take prescription painkillers just to be able to tolerate the constant pain, I'd love to go back to work. I'd much rather go back to work because I feel well enough to work a full day every day. I feel guilty for getting sick, because my wife has to do everything, from working full time, to taking care of everything at home. I wish I could do more to help her with everything (or anything for that matter), but she's a saint, and accepts my limitations, even better than I do. I'm generally a very positive and upbeat person, but I have to admit that being sick for so long, being in constant pain, not being able to breathe, not being able to work...all of these things are really getting me down. I'm just sick and tired of always feeling sick and tired. I'm sorry for rambling on, and for being so negative (out of character for me), but I just don't know what to do anymore, and really just needed a sympathetic ear. I see my regular, more knowledgeable doctor tomorrow; I hope and pray he will have some better news for me. Thanks for listening."
 
So, I'm not crazy, and my husband hurts, he just won't tell me so that he does not add to the stress, but he looks like crap, so I just know these things.
I'm going to put this up, for now, he's doing another breathing treatment and looks like he needs a nap.
I feel better now, somewhat.

No comments:

Post a Comment