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.
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.
Comments
xoxomeg
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 :-)
Lisa
Thank you Lisa!
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.
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!
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.
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.
Have a good day,
~ bangchik
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.
:)
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!
Love the new profile pic and your new outlook. Good luck! <3
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!