Wednesday, June 17, 2009

Not Exactly Music To My Ears and Acceptance

Went to my 'every 6 weeks' follow-up doctor's appointment with my Rheumologist yesterday morning. Apparently my heart palpitations/racing (not often, though enough to be noticeable), vision issues (blurriness and discomfort) and muscle cramps (too often & not dehydration) are "disease progression." Not exactly music to my ears I can tell you that much.

We discussed my pain & swelling levels (back on the rise through the last 2 iv treatments) and agreed that my iv med should be increased from 400mg every 8 weeks to 500mg every 8 weeks. (This brings me closer to the area of 800mg, which Dr. A feels would be the max dose for me, and the fact that I'm getting closer to that mark scares me).

One good thing to note, my blood pressure was "normal" for (at least) the 3rd follow-up in row and without meds, so at least that's one less thing for me to worry about (though it's like a needle in a hay stack really).

I'm always on the verge of tears after a follow-up like this, for most of the rest of the day until I get used to the idea so to speak. Makes me think and gives me pause. And scares me to my core. I was thinking last night about how I need to accomplish as much as I can so if we have children and anything happens to me, Vic can tell them I kept trying no matter what I faced. Then I started questioning, again, having children.

I also got very annoyed, no ANGRY, that when I shared all of the above, it was met with nothing. No supportive words, of love or encouragement. No (((hugs))), real or otherwise. Not even the sound of crickets. Made me question why I don't start treating people the same way. But, that would make me an asshole, something I am not.

Moving on: I wanted to share part of a comment I left for a fellow blogger earlier this morning: "Weight has been an issue and struggle in my life, during my youth and for the last 4 years, within a year of being seriously injured at work and an extremely complicated recovery. It's taken me a year and a half to lose 25 lbs of the weight I gained and while I've hit another proverbial wall, I'm not giving up. I don't want to be the weight I was before I gained, (at my age now, I'd look ill) though I am aiming to weigh at least 25lbs less than I do now.

My overall goal is to be healthy, as healthy as I can possibly be, regardless of size. I have a disease called Psoriatic Arthritis which complicates this goal and it's progressing, but I cannot afford to give up. (Please remind me of this if need be, lol!) Losing that 25lbs brought my blood pressure back down to normal and without meds! I can't diet, per say, because of my health, nor can I exercise consistently, but, I watch what I eat (especially watch for sodium and high fructose corn syrup), get moving when I'm able and take vitamins. (I am a firm believer in the power of Vitamin D, among others).

I think the best thing peeps can do for themselves is to aim to be healthy and accept whatever size we are when we're healthiest."

I believe this new outlook of mine is coming from acceptance. I changed my profile pic(s) to a current photo, taken while we were in PA last week. It's the only recent photo of me that doesn't make me cringe and I feel it's time to accept how I look now. (As you know, I've had a very difficult time with how my weight gain has changed my facial features).

Coming tomorrow: My Honest Scrap.

21 comments:

Meg said...

Oh Jo, my heart goes out to you. Call me if you aren't getting what you need by those around you.

Meg said...

Oh Jo, my heart goes out to you. Call me if you aren't getting what you need by those around you, I am always available to talk.
xoxomeg

Jo said...

Thank you sweet Meg! Thank you! Much appreciated.

windy city girl said...

{{{HUGS}}} I was actually coming here to post about how I LOVE your new profile photo. You're positively *glowing* in it.

And, of course, you know how I feel about Health At Every Size (HAES). It's my new cause!

Please know that you're always in my thoughts and prayers. I want nothing but the absolute best for you - in health and in life :-)

Lit and Life said...

You look great in your new profile picture! What a battle you have every day and what an inspiration it is to read about how you were able to pull yourself back up and continue the battle. Know that everyday, progress is being made on the medical front.

Lisa

Jo said...

Gill, I love you, as always and thank you!

Thank you Lisa!

Lora said...

Jo, I LOVE your new pic, I saw it on a few other blogs this morning and had to click over and see who that was and it was YOU!!

Thank you so much for sharing. I've recently dumped my rheumatologist because he didn't even have crickets to respond to my concerns. Maybe it's something with the field? Who knows.

I love your approach to be HEALTHY above all else.

Jo said...

Lora, thank you! (I'm blushing, lol)

My rheumologist and orthopedic doctors are great, but I've yet to find a primary doctor as good as either of them and it took me 11 years to find them! (My rheumologist is acting as my pcp).

I'm glad you're acting on not being listened to! Don't give up and keep trying different doctors until you find the rheumologist who listens to you, works with you and will do whatever they can to help you. You will find him or her!

Joanne said...

Hi Jo Oh you poor thing. Family do find it so hard to understand chronic illness.

I was surprised that all the symptoms you mention are as a result of PA.

I know we had this conversation before but have you ever seen an Lyme Doctor no not your GP or Rheumatologist but someone who specialises in Lyme. So many of your multisystem symptoms sound like they could be lyme.

Take care and hope you feel more comfortable again soon.

Jo said...

Thanks Joanne! (Though I wasn't necessarily referring to family!)

I appreciate your concern. As I've mentioned before, I was treated by a Lyme/Internal Medicine Specialist over 11 years (one of the supposed "best" Lyme specialists on the East Coast) and was treated aggressively for Lyme - I was worse by the time I stopped seeing him 11 years later than when I started. (The over-use of antibiotics has left me allergic to or immune to nearly every one on the market which is extremely dangerous in the event I do become seriously ill with a bacterial infection - had I known then...) I was down the Lyme road for a very long time and don't wish to return since there was no improvements or progress made and I was utterly incapacitated for SO many years.

I didn't start making any kind of progress until my orthopedic sent me to my husband's Rheumologist and over the last 4 years, I have improved significantly. Psoriatic Arthritis is an incurable, progressive and chronic disease which can be managed to varying degrees. I've had arthritis symptoms since high school and likely had juvenile PA which was missed and left untreated.

All auto-immune diseases share a great many of the same symptoms, lack of 100% positive blood tests to indicate which one you may or may not have, as well as sharing a great many of the same long term affects, all of which make getting the correct diagnosis difficult and in many cases a long time coming.

Bangchik and Kakdah said...

Setting target on things we are in full control is a lot easier... Of course target can be adjusted to suit parameters at hand....

Have a good day,
~ bangchik

Lizzi said...

Jo,

I'm loving your new profile pic! You look happy in it. And I'm liking your new color scheme.

I don't really know what to say except that I hope you aren't in too much pain right now. I know that sounds pretty lame too. There is a blog I used to read by a woman who I think had PA - I know she had it as a child. I'll send you the link. I'm not so sure how much she talks about it but I know she has mentioned it.

You're absolutely right about being healthy regardless of size. It's something we could all live by.

:)

Jo said...

Thanks B and K!

Lizzi, it's alright not knowing what to say and it's not lame! Just showing some love helps more than you can imagine! I'm not in as much pain as I used to be, so while it gets tres uncomfortable at times, I'm thankful it's not close to where I used to be. I'd appreciate the link when you get a chance.

Thanks re my new profile pic and color scheme!

Yes, healthy at any size is a good outlook, one I'm trying to stick with!

M.J. said...

I agree with Lora--I love your new profile pic. You have amazing hair!

Jo said...

Aaaww thank you M.J.! (blushing again!)

Mandy said...

Just giving you a big hug. Sometimes the worse part of doctors are their "bedside manner." I have left many practices because of it.

Love the new profile pic and your new outlook. Good luck! <3

Jo said...

Thank you Mandy! Hugs are always greatly appreciated! I'm so very thankful for the Rheumologist and Orthopedic doctors I have ~ they were the 1st I tried in each field and they've worked out. Primary doctor's are another story but with my RA doc acting as my primary, I'm not so stressed about the so far long search for a new pcp. I'm not too worried while living in NJ, it's moving to another state that worries me with respect to finding a new RA doc but we'll deal with that when the time comes!

Just Tera said...

Jo I love your never give up never give in attitude. It would be easy for a lot of people to do just that but not you. You should be proud of yourself and as you can see from all these comments you are cared for and appreciated. keep up that attitude it seems like the best medicine you're taking ;)

Jo said...

Tera, I feel like I just got a big, warm hug! Thank you!

Sydney said...

Thinking about you hear in Wisconsin. I know you've struggled with your weight and your health, but I think your positive attitude will see you through this.

As for the idea of having children, find a doctor who will support you no matter what the outcome will be.

Warm thoughts to you!

Jo said...

Thank you Syndey, thank you!