GreenSunflower

Update

Where do I start?

Looks like baby crazy may be back in action, this time Babe's idea, and we are both on the same page.  For Babe's superstition, I cannot say more

Boogie is cute as ever.  I totally want another dog. Babe says we need a bigger house, and if we need another dog, maybe it is time to go baby crazy.

I am back at work and I love it.  I forgot why I love it until my first day back.  The kids, the parents, my coworkers, the action, the thinking, the skills... and on and on.

I think the weight gain may have been halted by the thyroid meds.  Yippee!

Depression is at bay.  I have been feeling pretty good, haven't cried in probably a week or so. 

Mystery illness:  This is a whole subject all together.  I still have lots of pain, but it is better controlled with NSAID's.  I have much more energy since taking the thyroid med. I just don't feel right. 

I already sent in my absentee ballot and I voted for Hillary, because well, she is a woman, and any Clinton cant be bad.

Till next time...

Dx #4,958,493,049,584,873,903,948- Hashimoto's Thyroiditis

I saw the endocrinologist today, he said I have a "generous thyroid" and Hashimoto's thyroiditis.  I start thyroid hormone tomorrow.  Other than that, he says I most probably have Chronic Fatigue Syndrome.

There is one problem.  Dr. Montoya, the premiere specialist of Chronic Fatigue Syndrome, at Stanford, who publishes all the great studies, who my insurance even approved visits to, is not taking appointments until 2009.  The endocrinologist suggested another doctor in Redwood City, who was "doing Chronic Fatigue, a few years ago."  Heck that is more of a lead than any other doc has given me, so at least that is good.

He also said that the Hashimoto's does not explain all that is going on and further treatment from another doc is necessary.

I worked last night... don't fall down and die.  I was sore afterward and in a lot of pain but my fatigue got a lot better. I was tired, but not incapable of staying awake.  This is progress.  I am going to work two days a week with a 30lb weight limit.

/GS keeps trudging along in this muck we call life/

Yesterday, What I Did

1. woke up after 12 hours of sleep
2. went to the grocery store
3. took boogie to the vet
4. took a 3-4 hour nap
5. put away the xmas decorations
6. cleaned the living room
7. cooked dinner

This is a normal day to most people, but for someone who spent the last 6 weeks laying in bed or on the couch, the ability to even stand long enough to cook a dinner is a major accomplishment. 

I am superstitious so I wont say what I am thinking, but I think my "what I got done list" speaks for itself.

I am still going to pursue the specialists.  I have an MRI on Wednesday and I will make an appt at the endocrinologist on Monday. 

I am hoping... that this was/is a combination of some horrible virus running it's course and my thyroid dying.  That would be so much better than Chronic Fatigue Syndrome or We Don't Know What The Fuck Is Wrong Syndrome.

But lets wait and see. 

More Lab Results

I got my anti-thyroid antibodies checked and lo and behold my anti-TPO antibody is 258, it should be <40. 

So autoimmune hell is back in action.  Could this be hypothyroid symptoms? A few of my symptoms match.  Could this be a combination of health problems?

My doc faxed the lab results to my rheumatologist, but I wont  know anything until Jan 2nd.

For all you special blog readers who tell me how fat I am.  Will you recant if I lose all 70lbs I have gained in 2 years, if it is my thyroid?

Could It Really Get Any Shittier?

I finally got a hold of the infectious disease specialist, he took a look at my referral and immediately said he doesn't treat Chronic Fatigue Syndrome, and that I would have to look elsewhere but he didn't know where.

Thanks, a lot.

I called my neurologist and told him I don't have an autoimmune disorder and he said I now need an MRI.  Will find out tomorrow when that is.

I found one specialist at Stanford who treats CFS.  I might end of paying privately for that pleasure. 

There may go the big home we dreamed about this year... all down the drain in Dr. bills. 

And after 4 weeks of sitting on the couch, I am *surprise* starting to get depressed.  If a doctor cant help, then what is the point of living through this? 

Babe is intermittently understanding and patient, and at times down right mad and even verging on mean.  But really who can expect someone to be patient at all times when they have someone with a mystery illness, threatening to suck dry the family coffers, often unable to get their own drink of water, and constantly miserable?

If the doctor told me tomorrow that I was going to die and I had a terminal illness, I would believe him, I feel just that bad.

Oh The Joys Of Being Ill

Today when I saw the rheumatologist, he wrote me a prescription for both a long acting anti-inflammatory and  a painkiller.  The painkiller is something I will take like once a week, given my history of pain, but anti-inflammatory is to be taken everyday.  I wanted to get it, so I could make it through the night without the joint pain.

This meant sitting in the Walgreen's pharmacy for 45 minutes while they got it together.

I handed my prescriptions to the tech and he put it in, told me to wait 45 minutes.  At this point I am holding back a laugh, because there is a guy in the waiting area with a sleep apnea snore that would wake anyone but himself. 

I told the tech I  was going to go wait in their napping section.  He laughed.

I wanted to sit at least one chair away from the guy, not because he was fat, or snoring, but because I knew he would smell by just looking at him.  There was no option, I had to sit next to him.  And he smelled like a prostitutes sheets after a hard week of labor, right before the trip to the laundromat.

That was okay, because hey, I am a nurse.  I know how to mouth breath for a living. 

Then he wakes himself up snoring.  Looks at me and smiles, and apologizes profusely for snoring.  Then he looks me up and down and starts up a conversation quite like he was hitting on me. 

I think the tech had mercy on me, because he quickly went and found this guys prescriptions and called him to the front.  The guy picked up his prescriptions, and came over very close to me to wish me a happy holidays, but is all I wished was that he had brushed his teeth in the last 48 hours.

I then looked down at myself.  See, I had just woken up from a nap in pain, when I left the house simply throwing on a pair of crocs and stumbling out the door in a post nap, post viral haze.

As I am looking down, I see a dried loogie on my shirt, because evidently I had coughed in my sleep and it joined my shirt and dried.  There were also some crumbs of a sugar cookie I had eaten right before my nap. 

I was in yoga pants and a black shirt, so every crumb and dried secretion stood out.  I also hadn't showered in two days because it takes so much energy to shower that I don't do it, I just have Babe do the smell test and if I am a go, I brush my teeth and take up residence on the couch.

I guess all this made me look gettable to this guy.

As I was walking out of WAG he was standing waiting for his mom to pick him up (did I mention he looked about 45).  I got into my Volvo and headed out to my life, that does not involve being a woman with crumbs and a loogie on my shirt, into my post viral haze, sitting on the couch with Boogie, as he waved emphatically goodbye.

And The Quest Continues

The quest for a diagnosis, that is.

I saw the rheumatologist today and he declared, seeing all my blood tests, doing a physical exam, and after listening to me for 45 minutes, that I am autoimmune free, aside from the autoimmune stuff I already have going on (interstitial cystitis, gluten intolerance).  He was nice enough to write me a prescription for pain killers, and antiinflammatories, so I wont be dying of pain until I get to the next specialist.

He feels my problem looks viral.

swollen tender lymph nodes
low grade fever
myalgia
fatigue
diffuse pain
intermittent nausea

It is like I have the worst flu of my life for the past 4 weeks. He said I need to see an infectious disease specialist, this only makes me think I have CFIDS.  This would not be the first time docs have thought this is what I have.  I have suspected this were the case, and thought a rheumo was the person to see for it, but he says infectious disease is.  I already have the referral and approval, I just have to get the appointment tomorrow.

This means a ton of blood tests and seeing where we are. Hopefully there wont be more painful diagnostic procedures involved.  Hopefully I can get an appointment quickly.

Chronic fatigue immune dysfunction syndrome is a disorder of exclusion, so we are well on our way to excluding everything.

Oh and my nerve conduction test was normal, so I dont have a neuromuscular disorder.

In Pain

In Pain
Originally uploaded by greensunflowerRN.
This was me last night.  I saved up all my energy until 2pm, to go to the camera store with Babe, because he was going to buy me a couple of lenses for my camera and a new flash.  I was careful not to do much at all but watch TV and lie down, reserving it all for a three hour outing with Babe. 

We did go to the camera store and we bought a Canon EF 50mm f/2.5 compact macro lens, and a 430EX speedlight flash.  It makes my camera awesome.  Really awesome.  I can take pictures I have always dreamed of. 

We went out to dinner (at 4:30, I usually crash around 7). We had a nice dinner, and even made a trip to BevMo, before heading home.  I got home and felt... okay.  I took some pics with the new lens and flash.  The pics were so awesome because I could take them in low light, and they still looked warm and sharp with the flash and new f-stop.  But then my hands started hurting because the camera is heavy now and without a lot to hold onto.  To solve that problem we have bought a grip that will arrive tomorrow.  But I had to stop taking pics, pure and simply because of muscle fatigue and joint pain, I was certainly not ready to stop by any means. 

Then I just sat on the couch and watched TV, trying to feel better.  I took 600mg of Ibuprofen, but no help, the pain kept getting worse.  Finally, I ventured to walk up the stairs to bed, where I could find a more ergonomic position and get more support for pressure points. 

Just getting off the couch brought tears to my eyes.  My hips hurt, my knees hurt, my ankles hurt, it hurt to move, it hurt to not move, it hurt to lie down, it hurt to sit up, and it certainly hurt to stand.  I cried every step up to the bedroom.  I got into bed, moved all 6 pillows into perfect position and found some comfort.

This picture was taken shortly before I got off the couch, when the pain was getting to be too much.  Babe was taking pictures of everything in the house, and he took a pic of me, that I didn't know about.  I am not sleepy in this pic, I am pure and simply in pain.

Life right now

Life right now
Originally uploaded by greensunflowerRN.
This is my MacBook, on my bed, with my USB cable for my camera.  This is my life.  I lie in bed, sit on my computer, download pics of my life around me, or I sleep.

I started taking Pr0v1g1l  in the morning and that keeps me awake.  I guess it is  nice not to sleep 16 hours + a day, but at the same time, I still feel like shit.  My joints ache, the weight dependent and non weight dependent.  I have pain running down my muscles, warm, aching, hallow pain, that moves slowly and makes me want to writhe. I take so many NSAID's that I am sure I will be vomiting blood soon.  I don't even know why I take them, they barely work.  There is the cold aching back pain, that makes me walk like I am 80 years old, and let us not forget the nausea. 

I wish I were pregnant because that would explain all of this, and I would just have to wait out the 1st trimester, but alas this has been building longer than 12-14 weeks, and I am not pregnant.  Totally and completely not pregnant.  I am just sick and no one knows why.  I am not working, I am not keeping up with friends, but I am just lying like an unproductive blob on the couch, with my dog, who cuddles like no other.

Babe is a champion saint as always.  He tends to my pertinent needs and makes sure I eat, shower, and get cuddles.  All things that I would forget to do for sleeping or just sitting feeling totally out of it from the weird sensations coursing through my body.

I want my life back.

Blood Tests Are Back

I dont have HIV, Hep B, Hep C-phew!!

I do have an extremely elevated t3 (one of the thyroid hormones)  but not an elevated TSH (another thyroid hormone that is almost always elevated at the same time)  The only thing I can find for that result are autoimmune disorders and a benign pituitary tumor

I also have positive IgG titers for HHV-6 and EBV.  Two virus often seen in autoimmune disorders.

I also almost passed out in the shower today. 

I have been referred to a rheumatologist (immune disorder doc) and my doc is consulting a endocrinologist (hormone doc) to determine if I need a referral there too.

Nerve conduction test on Tues.  Tomorrow will find out when rheumo appt is.