Friday, July 5, 2013

Can I get my foot in my mouth?

Maybe if I wasn't so dang swollen I could ... haha.  Anyway, I feel like I need to stop this caterwauling and whining.  I know it's good for me.  It gets it off my chest, it allows me to be pleasant to those around me and allows me to smile and "try" to enjoy life.  But, after a particular whine fest (today's) I came across another Wegener's Granulomatosis Support Group so I joined.  There's nothing greater than seeing that there are other people out there who know exactly the pain I am feeling.  However, it's also a major eye opener that I truly have been such a cry baby!

Consider me one of the luckiest of Weg's patients in that my disease was discovered after approximately 6ish months of testing. I read tale upon tale of years of agony and misdiagnosis.  Severe kidney failure, dialysis, hearing loss, vision loss, ... Saddle nose deformity.  Good god, I have no idea how I will mentally be able to accept my nose collapsing.  I already think I have a hideous nose ... I don't know what I would do.  Anyway, there have been some people who have gone through absolute hell before being told what they had.   I am lucky that my general doctor looked at my records from last year (when she was on maternity leave and hadn't even been involved) and saw that I had a "sinus infection" from february til sometime in June and then the ear issues.  She is the one who ordered the autoimmune panel.  She is the one who went "hmmmmm".  I love my PCP.  I do.  She is my hero in all of this.  she started the ball rolling in that direction.

But, seriously, in the grand scheme of Weg's I have it good and yet I throw such temper tantrums and get so angry and upset at the world.  C'mon Nicole Alison. I'm not like that.  I get mad when I hear people like that and yet,  there I was.  Whine Whine Whine.

It hurts.  I'm not gonna lie.  My knee swelling actually has gone down and now my shoulders are in agony.  I saw it mentioned on several of the posts so I don't feel as alone.  Mobile Arthritis, Transient Arthritis, Roaming Joint Pain.  It was referred to in many ways.  One moment, as is my case, your knee won't work and be swollen and painful.  Then ... that pain fades away and sneaks around the super highway of blood vessels and finds somewhere else to attack.

At first, I thought my right shoulder was smarting because I picked up a cane today to assist getting me around a lot quicker.  Alas, it's in both shoulders now so that can't be it.  My throat's scratchy, my nose really hurts and (sorry Brianne) keeps throwing out blood clots.  The eyes, they are a-burnin' my chest is tight, ... same ol' same ol.

Funny lil story, I emailed my doctor an update as to what has been going down these last couple days with the lowered meds and ... then I was wondering why on earth he hadn't written me back.  He didn't have an "out of office" note and he's usually so good at either emailing me first thing, at lunch, or at the end of the day.  It dawned on me about the 60th firework call we took today that it was a frickin' holiday.  Duh.  Smart. 

I think the wegener's is attacking my brain! Not really.  It just feels like it sometime.  Today, a major contributer to my malaise is the lack of sleep for the last week. 

However, Dan is handling the water guys tomorrow at the house so I can take a pain pill when I get home and hopefully get a blissful nights sleep.  Of course, if he forgot to thaw the chicken I may have to make a quick detour to the store fairly early to get a new thing of chicken to make for dinner.   I think that's a small price to pay for how late he worked in the yard to get ready for the water gguys tomorrow, and the fact that he will be there with them to alleviate the stress on me.

The prospect of a restful sleep is so enticing I am almost drooling about it.  Does that make me old?  I mean, I've got the cane so there's not exactly a young vibe going on right now.

I hope everyone had a safe and wonderful Fourth of July.  I was working but time seemed to go pretty fast.  I am very grateful for having a day off though.

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