Sunday, July 30, 2006

Just Keep Swimming, Just Keep Swimming...

This is how I'm feeling right now. I'm swiming for all I'm worth right now but a floatation device would be a nice surprise. ;) Where do I start the updates?

Saw the rheumatologist again and all he really did was up the Elavil some more, tell me not to dwell on the pain or it will hurt worse (the response to me saying that if we can just ease the pain I can take the reins from there. WTF???), and poke me in all the spots that already hurt. lol. I'm honestly getting really sick of this Elavil crap. It doesn't work...for anything so let's get past it already and go on to something that WILL work. *sigh*

Also saw Dr. M again (every three weeks) and he upped the Neurontin some more which was my idea with him because at 700mg it feels like something is happening. Not sure what but it's something and that's better than what I've had...nothing. So the Neurontin is at 900mg right now with it going up to 1200mg by the time I see him again. I know it seems like alot but around 800mg is where they start diabetes patients who have nerve pain. I've still got at least another 1000mg that I can go. Woohoo. ;)

According to their scales I've lost a total of 8lbs since December. I'm not sure whether to believe it or not though when the scale here at home only shows a 4lb loss. Either way it's better than gaining more weight and hopefully within the next year I can lose 15-20 more pounds and be my old self again.

The sleep aids didn't help Sis sleep at all so we took her off them and made an appointment with a craniofacial center on August 7th. It's looking like she's going to end up wearing a mouthpiece at night to keep her from grinding. I just hate that the poor kid is in pain and I can't do much to help her. She's also now complaining of pain in her elbow as well. She says it hurts when she tries to straighten it. She's too young to fall apart on me dammit. :(

I have another appointment with the rheumatologist in August, another appointment with Dr M in August, Sis's appointment with the craniofacial center, Lil Man has dental work, and Vin has an appointment with a plastic surgeon to look at his nose. It seems the surgery to fix his deviated septum didn't go so well and now we have to figure out how to fix it. *sigh*

I'm starting to realize that the fibromyalgia and peripheral neuropathy are my two biggest problems right now. They are what leaves me in pain nonstop which in turn drains me of energy. I've visited message boards for both and to be honest, they are kind of discouraging. It seems that no one finds relief for very long before they have to start all over again. I just can't believe that at 30 years old I had to deal with two cancers (one metastatic) myself plus the MTC in the two older kids and now at 31 years old I have to deal with fibro and neuropathy pain!

Whatever happened to being healthy and enjoying life while you're young? If this is my life in my 30's then what the hell do I have to look forward to if I make it to my 40's and 50's? This just plain sucks and I'm going to keep trying to find relief from this pain so I can enjoy my kids and enjoy my life! I didn't make it through cancer just to end up a pain filled lump on the couch dammit!

Okay, rant over. I'll update again after we have all our appointments. Oh and by the way, I started following the traffic to this site and it's honestly very interesting. People from universities, hospitals, doctor's offices, and just random Google searches are reading on this blog. It's a little flattering and I hope that people will start posting comments to let me know they were here.


Sang said...

Hi. I live in a lil place in asia. Was blog hopping when I cam across urs. I was feeling prety down the whole day coz I haven't received my results for my exams and all the waiting has led to loss of sleep. Anyway, I came across ur blog and was amazed at how much u've been thru and how positive u seem. U made me feel like picking myself up and looking at the world in a different light. Thanks. I hope I can inspire someone to do the same.

Kat O+ said...

Hi, I found your blog last year through one of your posts on DotMoms. Honestly, your struggles amaze and humble me and that's why I'm subscribed to your feed. All the best to you and your family.

Elder Faery said...

Hello Jo! The stats counter was a real eye opener for me too..but how do you know where they are coming from (universities etc) my stats just show IP addresses and regions...??? It's hard not to feel a bit nutty when I am tracking my trackers (LOL);)

I spose the time to worry is when someone is googling you by name from a remote island ... repeatedly..that ain't happened to me yet, but my paranoia insists that it is only a matter of time.

I am sorry to hear that you are feeling a little bit 'under the weather' as we Engleeeesh say...The thing about turning 30 that i noticed is that whatever you've got healthwise that is challenging, suddenly becomes even more of a drain..I dunno why it is like that. Just that in our 30's it all feels a bit more 'uphill'. Coming from a family where my mother and all my aunties take to their beds around the 30-50 year old stage, i am determined to 'make the most of it' while theory.

*sigh*.....Is right what 'kat o+' says though, your life is humbling to read....not because of any health struggles but more because of your wit in the face of things:) Sending you love and healing comfort vibes:)

Robin said...

Heya Jo,
As I've told you before, I'm a TMJ dysfunction sufferer, since I was 15. My TMJ specialist also specializes in fibromylagia-- any chance that Sis's dr. could give you some ideas? Just a thought.

I wear two mouth guards at night, and I wore one (lower teeth) during the day for about 8 months, while my jaw joint stabilized. TMJ is not a quick fix, no matter how you look at it.

I hope that the new neurontin dosage finally helps you. You deserve a little rest. :)

Emma said...

Hiya Jo.
I feel for you so much being in this pain and I too hope that the neurontin increase will help you and you'll get some relief from the constant pain.
It's exhausting just having all the hospital appointments too I'm sure.
You've been through so much with your own cancer and that of the children and yet still have a great perspective on things.
Somehow I think cancer does that to people, but still takes it's toll in one way or another.

Sending you and yours much love. x

Lotta said...

Hey there - thanks for your comments on my site too! I had pheripial neuropathy after baby was born and they never figured out why. Just put me on the Cymbalta. As you know I'm weaning off it cause of hair loss. So I'm curious to see if the pain is still there. The neuro's theory is that it was an autoimmune bug I got when I was preggers.

But..back to wonderful you! How do you do it? Where do you get your strength? You and your family are amazing!