onatreetop update

[Sangye]

We holistic docs call chemo all sorts of other names. LOL

[pberggren1]

I think when I get down to 10 to 5 mg of pred I'm going to go see my naturopath to see if she can help with the tapering process and adrenal function.

[drz]

They call CTX and the like "chemotherapy". This is a euphamism. The more accurate term is "Toxin therapy". But I suppose it doesn't have the same ring....

Al

But that is the whole point, isn't it, to almost kill everything including the host to get rid of one or two specific undesirable items, like the cancer cells or whatever is the diagnosed problem. All meds have side effects said my doctor, that is why we use them. Some effects we want and they are called successful treatment and some effects we don't want so they are called undesired side effects. Good thing they are able to develop drugs a little more specific and promise of more such drugs in the future.

[onatreetop]

Hello All! Been a busy summer. With all of the kids and still trying to work, who can forget all the doc appts and testing. Had to have an earlier in fusion which seemed to help but just got labs back and the pr3 is 6.1 no where near the 1.0. So I am a little upset until I can not get through to a doc in the am. Any advice? I am freaking myself out pretty badly. Finally meet a very nice lady at my RA Doc's office face to face. We live about an hour or so apart. she is doing better than she was 4months ago. So many issues.

[onatreetop]

I know I should be use to all of this but..........do we really get use to it? Always thinking this is the end when things feel better. Than to get the labs back to find that you arent feeling quite right because the monster is back? i turn 45 this year and being stuck in this 90 year old body isnt working out well for me or my family. Yes everyday is different I know that every well. I am awaiting the docs return phone call.........the longest part the waiting. So ..... do I pack for the hospital and carry on with the day? As if nothing is happening with the mini 5 minute brake down of tears until they call? Usaully this doesnt freak me out but for some reason I am really scared this time. Is the pr3 enough to go by?

[Lightwarrior]

I know I should be use to all of this but..........do we really get use to it? Always thinking this is the end when things feel better. Than to get the labs back to find that you arent feeling quite right because the monster is back? i turn 45 this year and being stuck in this 90 year old body isnt working out well for me or my family. Yes everyday is different I know that every well. I am awaiting the docs return phone call.........the longest part the waiting. So ..... do I pack for the hospital and carry on with the day? As if nothing is happening with the mini 5 minute brake down of tears until they call? Usaully this doesnt freak me out but for some reason I am really scared this time. Is the pr3 enough to go by?

Whoaa, hold on my friend. Remember that our C-ANCA which is the prb3 is not a valid way to monitor disease activity. I know you are afraid that because of your labs that your great summer will be only a memory. More reliable indicators are the non cardiac crp and an esrd. But the most reliable is how do you feel? I forget if your damage was lungs or kidneys?

Do you pack for the hospital or carry on with your day?? I vote for carry on with your day. NO the pr3 is not enough to go by.

I'm more concerned about why you are really scared this time? Remember your avatar, and your quote "see from another view...on a tree top" I'm sending you light and energy to your tree top.

[drz]

Unless you have symptoms or other reasons to be so fearful the above advice seems solid to me.Some times they change the readings of labs or use different measures so you can't really compare one to another. I have had this happen a couple times where I thought I had a really big negative increase but it was just a different way of reporting the results. Another time doctor gave me another explanation of why I might have had a increase in a reading that I thought was a bad sign and he was probably right since nothing really bad happened and my lab results got better in a few weeks.

You right it is stressful to have bodies that function worse than many people much older but try to be glad that it is still functioning. Hope you get some reassurance soon.

[Sangye]

Like Lightwarrior said, you cannot put all your stock into the pr3. How do you feel? Didn't you just get an infusion? What's your treatment right now?

[onatreetop]

Infusion was 6weeks ago. Feel like poop for to many different reasons, Rib and back pain not enough rest. this blasting humidity. Ended up in the er 2 more times. keep losing the felling in left leg and foot. I
know I have back problems but the last visit an xray not the mri or catscan told them I have a compressure fracture at T10. lol.......really? I have slightly buldging disk everywhere else but T 10? Now we are working on the cement surg. They want it done asap. I believe I did it weeks ago when I was in a lot more pain but the other testing didnt pick it up.Have my upper Gi scheduled for this week as well as another eco. New cardio doc believes I have had a heartache from the ekg he did. I am falling apart and melting down with it

[onatreetop]

Also some good news the o2 is helping my gas exchange rate. I was at 51 now at 71. almost there. found out that because of where I live the highest is 80 here. over populated and sarrounded by 3 big cities. But the o2 is healing.