What was the term Kloss used? "Putrification"? If memory serves me correctly!
Working really hard on getting to know what is best for my body. I have worked with physiatrists, physical therapists, massage therapists, chiropractors and alternative health practioners to learn that I can manage a lot of my symptoms with diet, supplements, proper body mechanics and listening to my body’s subtle symptoms that I need rest, sleep, food whatever.
This is a wonderful topic - thanks so much for posting it, SK!!!
There are so many things, but the top, I'd say are:
Diagnosis! Finally having a diagnosis after a lifetime of illness was WONDERFUL. My rheumy had never heard someone respond, "Thank God!" to a PsA diagnosis, and I had to explain to him that I've spent my life with pain, swelling, etc. and it was nice to put a name to it and have treatment options other than muddling through.
Perspective. Changing my perspective on what living with PsA means for me made a huge difference in my outlook and my health. When I stopped fighting PsA and learned to listen to what PsA has to teach me (while actively seeking treatment), life was vastly improved.
Remicade. So far Remicade has done amazing things for me and has made the difference between me needing mobility devices and me being able to hike with my family.
Acupuncture. I have an amazing acupuncturist who is able to help my neck issues in an hour with three needles in my foot. It's really quite amazing. I go in with minimal range of motion and leave with almost full to full range of motion.
- Remicade
- pain meds
- pain compound cream
- oddly, probiotics! Sometimes they work better than anything else.
Remicade, Arava and dark chocolate. Honestly, staying positive is probably the best thing I can do to help. This is the hardest thing to do sometime as well
Hi Kirsten!
LOL, no matter what, we gals have to have that chocolate! I like the milk chocolate, but hey, it's all good! I agree to the positive, my little grandson's were here with me this past weekend, (as they most likely will this coming weekend) and as much as they wear me out, they are the best exercise you can ask for and they make me LAUGH!!
I laughed at that little one until the tears rolled! What a character! They keep me looking up, getting up!
Hope you are doing well on the Remicade!
I agree Louise! Attitude is everything, gotta 'keep looking up'!
Louise Hoy said:
The biggest thing for me was to change my "mind set" I am who I am, PsA and all. It doesn't make me a lesser me. Once I accepted I'm still the same me inside, I was a whole lot happier. Once my mind was right everything else fell into place :)
Hello nym!
Yes, a diagnosis! The current average is 7 years, before that it was 35 years, and then there really were no meds, this is info from my Rheumatologist. He says 'the golfer' did a lot for raising awareness of PsA!
I know you suffered many years, desperately searching for answers, for relief!
Wow, sounds like you have a true master acupuncturist! Good for you!
Yes, I owe much to probiotics too, anyone on pain meds can understand, I also take Spectrazyme, recommended by my DC, they were introduced to me about the time of my gall bladder surgery.
Speaking of oddly, when I take the probiotics and the Spectazyme, the Costochondritis is nearly nonexistant most of the time! The Enbrel is still working!
Meppert said:
1) Remicade
2) pain meds
3) pain compound cream
4) oddly, probiotics! Sometimes they work better than anything else.
Attitude has been the biggest adjustment AND help. Once I realized that the PsA wasn’t going away, I stopped WAITING for a CHANGE and began embracing how I was going to DO my life and not let PsA get in the way. The grief over what had been ALMOST drove me crazy. Meds have been up and down for me. I think the best combination has been sulfasalazine/Humira/Cymbalta. That’s not to say I haven’t had some really bad days or even weeks… But I KNOW the swelling and pain will ease up eventually and I can deal with that. Exercise is hard but critical. Got to keep moving. Juicing has really helped. I agree … Veggies with veggies… Fruit with fruit. 1.5-2 quarts per day. Makes me feel like I’m NORMAL again.
My Mum is an inspiring case but her PsA was not associate with skin disease, just nail signs, first flare after flu age 42 then very bad involvement of the feet and knees always one side at a time, in her 50s which she managed herself with high doses of aspirin for as short periods as possible (kidneys still OK, had bad SI and lower back pain from her sixties onwards but all along used aspirin and denial, working through it. She was very fortunate her hands not involved until after she reached 86. She held down job as school secretary brought up 3 kids successfully, we all have some signs of PsA. she got a moderate crohn’s aged 80 needing steroids mesalazine then azathioprine nor need hospital admission. Aged 84 she got really crippling back flare and Etanercept was magical, took care of crohn’s too, eventually regained mobility enough to b independent at home for 6 months and enjoy a holiday. She never had Mtx though as aspirin worked Ok and she was on steroids and aza for crohn’s when that was first considered. I have the disorder myself we are lucky it seems moderate but at least my Mum shows that you can get to 80 and get plenty done in life between flares in some cases.
My Mum is an inspiring case but her PsA was not associate with skin disease, just nail signs, first flare after flu age 42 then very bad involvement of the feet and knees always one side at a time, in her 50s which she managed herself with high doses of aspirin for as short periods as possible (kidneys still OK, had bad SI and lower back pain from her sixties onwards but all along used aspirin and denial, working through it. She was very fortunate her hands not involved until after she reached 86. She held down job as school secretary brought up 3 kids successfully, we all have some signs of PsA. she got a moderate crohn’s aged 80 needing steroids mesalazine then azathioprine nor need hospital admission. Aged 84 she got really crippling back flare and Etanercept was magical, took care of crohn’s too, eventually regained mobility enough to b independent at home for 6 months and enjoy a holiday. She never had Mtx though as aspirin worked Ok and she was on steroids and aza for crohn’s when that was first considered. I have the disorder myself we are lucky it seems moderate but at least my Mum shows that you can get to 80 and get plenty done in life between flares in some cases.
My 14 year old daughter has PsA and began juicing about 3 weeks ago; She takes Humira shots and 25mg of methotrexate… She struggles and I can’t relate to her pain. It’s so encouraging to read everyone’s posts.
I hope and pray we start to see more benefits of juicing. She starts high school tomorrow and has 3 flights of stairs that she will be climbing up and down all day.
Jane ... does her school have an elevator? All it should take for her to be able to use the elevator is a note from her doctor. I had an elevator key my junior and senior years of high school due to knee issues. I also spent a lot of time on crutches, and was able to have a set of school books for home and keep one in each classroom so all I had to carry in my backpack were my notebook and a folder with my assignments. That also saved trips back and forth to my locker during the day.
Jane said:
My 14 year old daughter has PsA and began juicing about 3 weeks ago; She takes Humira shots and 25mg of methotrexate.. She struggles and I can't relate to her pain. It's so encouraging to read everyone's posts.
I hope and pray we start to see more benefits of juicing. She starts high school tomorrow and has 3 flights of stairs that she will be climbing up and down all day.
Ditto to what nym said.
My school did not have an elevator, but it was a smaller, older school. Some accommodations I had in school were:
*extra set of books for at home and school, so I didn't need to carry heavy books home and back
*classes with at least one friend, who had a locker assigned next to mine, so the friend could carry some of my books back to the lockers between classes
*able to sit near the door so I could be the soonest to leave since I needed more time to get between classes
*teachers who knew I might be going to visit the school nurse a lot (sometimes I would get very fatigued during the day and would need to lie down for 1/2 hour and miss part of class). They were given notice so I didn't get a public talking to about missing parts of class so much.
*homework extensions if needed (my school didn't have much homework, but sometimes I couldn't study for a test or do homework due to exhaustion and pain).
These were all things I could do that weren't so obvious to other kids, so I didn't feel too freakish. But these things made a HUGE difference. There were many many more things that would have helped, but I didn't want to stand out in middle school or high school, so I mainly used invisible accommodations, or stayed home on particularly bad days.
I wish her the best in this upcoming school year.
Jane said:
My 14 year old daughter has PsA and began juicing about 3 weeks ago; She takes Humira shots and 25mg of methotrexate.. She struggles and I can't relate to her pain. It's so encouraging to read everyone's posts.
I hope and pray we start to see more benefits of juicing. She starts high school tomorrow and has 3 flights of stairs that she will be climbing up and down all day.
Jane, what the other ladies said. However I would take it one step further and put it together in a 504 plan. It will make it so much easier for her to not have to ask....... I would also add accomidations for testing. They still have these kids sitting in furniture designed in the 15th century. Can you imagine how they fell 30 minutes or less sitting imobile on a board? Yet the tests determine so much. AP classes, scholarships erc.. I have students that use the cameras on their tabs to record classes etc in the event they have leave., also taking notes can be tough. The school may be able to supply one through their adaptive technology department. They have the funding. No kid wants to stand out, but as important as academics are learning her body (TOUGH FOR ANY TEEN) and how to take care of themselves.......... c
I have found Yin Yoga and it has been great for me. It is a passive way of allowing the tissues and muscles to stretch using supported poses and relaxation.
I am early in the process where someone is actually treating me (only my second dose of methotrexate today) so previously I've only had anti-inflammatories and am currently on naprosyn in that regard.
For the last several years I've seen a massage therapist every 3 weeks or so and she does myofascial release and works to keep me "ironed out." I don't think I'd be mobile without her.
This site!!
I don't know if it is still the same, but 504 plans need only a note from the dr. with a diagnosis and it needs to be updated every school year. Trust me, extra accomodations can be nice. Imagine standardized testing with no time restrictions!
tntlamb said:
Jane, what the other ladies said. However I would take it one step further and put it together in a 504 plan. It will make it so much easier for her to not have to ask....... I would also add accomidations for testing. They still have these kids sitting in furniture designed in the 15th century. Can you imagine how they fell 30 minutes or less sitting imobile on a board? Yet the tests determine so much. AP classes, scholarships erc.. I have students that use the cameras on their tabs to record classes etc in the event they have leave., also taking notes can be tough. The school may be able to supply one through their adaptive technology department. They have the funding. No kid wants to stand out, but as important as academics are learning her body (TOUGH FOR ANY TEEN) and how to take care of themselves.......... c
Acceptance of the new me has haloed the most. When fist diagnosed, I just kept thinking of all FO the things I couldn’t do anymore. I was once a wild outdoor woman! Camping, floating, hiking, and digging in my garden really are my favorite things to do. I haven’t been able to do any of this the last two years. This discovery of new limitations made me feel as though I was looking my identity;it was pretty horrible to realize this and even harder to accept. Even on a good day; this sort of activity is a big no-no.
The other thing I appreciate most and think has helped me most is my family, and my husband.