I need some perspective!

Hi friends:

I am a little over a year into my dx of PsA. I can honesty say that this is the worst I have felt, even worse than when I was diagnosed and not in treatment. I am seeing the Rheumy Wed, and supposed to get my 5th infusion of Orencia. I don't know if it is working. I don't feel like anything is working.

I guess what I want to know is, how bad can this get? I can walk but it is so very painful.I feel like everything from my hips down is severely bruised. Am I going to end up in a scooter chair ? What can I expect to happen?

I want to fight with everything I've got. That includes not lying around having a pity party. When I feel this bad I just want to withdraw from everything and take megadoses of prenisone and I know that is NOT the right thing to do. A friend asked me if I'd like to go to Asheville and walk around and I had to say "no" because I could barely get my grocery shopping done today. But oh, I would have loved to have been able to say "Yes, let's go !" if I had a scooter chair, I could go places and maybe have fun...maybe ?

And then, there is my new job, which I LOVE . I am thankful I wasn't on the work schedule at the Arts Center this week because it would have been really tough to work from 9-3 feeling this bad. I am on the schedule next week and I want to be able to go. I also have a gallery show that I am trying to get ready for next weekend. I don't have time for this @#$%^....OK, thanks for listening

You have a great attitude Mimi. You do need to keep moving and busy, while still resting when necessary. You mentioned feeling bruised. . .this is likely all tendon inflammation. I've done PT for this and it really helped smooth things out. You may want to talk to your doctor about this. If the PT helps, you'll feel a lot better. Not perfect, but much more comfortable.

Several of us here have gotten to the point of needing a wheelchair / scooter (at least Nym and I), and later not needing them anymore with a med switch. So use what you need NOW, because it is not a forever decision. It is just a right now decision.

This disease can get incredibly bad...but it doesn't necessarily stay that way. My body is walking proof. I've gone from barely able to walk or hold my baby, to mountain biking in the same 18 month period. Then back again. Then back and forth for awhile. My kids and husband go with the flow with what I can do, because the only certain thing with this disease is that it is always changing.

I had to turn down a trip to the park for 1-2 hours with my 12yo....with another mom doing the driving. My back is inflamed (getting my MRI on Friday), and I simply can't sit or walk being comfortable that whole time. Tomorrow I have a lot of things to do (a busy day at one of my kid's schools), and don't want to risk anything going amiss.

Yet I feel happy about my life. I've got understanding friends, volunteer work (the school chickens laid their first 2 eggs!), lots of things to keep me busy. When I do better on a med, I'll just fold in more activities. When I don't do as well, I'll take out some activities.

Hang in there Mimi! My response was more philosophical than practical, but I wanted to share with you as a long timer to a relative newbie to PsA.

I think Marietta said most eloquently what most of us know. It is about getting through right now. I have spoken with a fellow PsA patient about scooters. I went to the Botanical Gardens in Montreal and really could have used a wheel chair but they were out. I also hesitate when it is very hot out as I do not want to inflict pushing me on to my family on a hot day. I end up doing more and walking farther than I know is good for me. I do think we need to push our boundries every now and then because sometimes we can do more than previously thought but I know I over do it an awful lot.

In the states we can go to a medical store that deals in medical equipment. They can see what our insurance will pay for and set us up. I am not sure what is available in Canada (you are in Canada right?). I am sure someone here from Canada can speak to that.

From what my fellow PsA friend said her scooter comes apart into 4 pieces that are quite portable. She has even taken it in pieces on an escalator in London's tube system! She also says it fits well into a regular car like a hatchback and can be put together easily in a parking lot. I am going to look into for some of my "bad" times though right now, of course, I am walking fine with my cane with minimal exhaustion.

I will keep you in my thoughts and prayers mimi (you still remind me of Garcia on Criminal MInds! You are always so cheery and colorful, I hate to see you down). The one thing I first learned about PsA is how unpredictable it is. We all try to exercise, eat right, take our meds but sometimes flares come and go without warning. It is sort of like the weather in Vermont, "if you don't like the weather in Vermont just wait a minute!" Orencia may not be the drug for you and your Rheumatologist can suggest something else.

Mimi- a lot of massage, ultrasound, stretching and strengthening. Last spring I went in to work on my hips, and we also addressed my ridiculously painful it band. I’m not going to say it was fun, but working on it did decrease my pain levels.

If you don’t like who you’ve seen, find someone new. I’ve been through a few, but am now a frequent flyer with the place I use.

I am sorry I forgot you were in the states! I seem to love all things Canadian so I lumped you on to that list!

I belong to a gym about 45 minutes from my house. That is really close in Vermont terms! I learned my exercises in PT and an arthritic class. I pay $500/year. I started doing it a few years ago when I got some cash for Christmas. Now I save my money each year for a Christmas present to myself. By paying it all in one payment I get a significant discount. They also gave me a senior citizens discount which I am not entitled to; I remember looking at the sweet young thing when he added that to the bill and thought about straightening him out or taking the money and running. I took the $100 discount and kept my yap shut! It works out to $10 a week this way. I consider it money well spent. I bet if you comparison shop you might find even better deals in NC.

Welcome back to the States mimi!

Gardner-Webb is really close to you isn't it? They have an excellent training lab which usually involves a small gym for students to design and carry out a supervised exercise program. They have several fifferent rotations Give them a call. Usually you can get in st little or no charge. They have complete facilities.

Hugs, Mimi!!! I was right where you are when I got my wheelchair. It was the difference between me being a hermit and me living life to the fullest. As Marietta pointed out - I am no longer in a wheelchair, due to finding a med that works for me.

From what I've heard and experienced, the easiest way to go about getting medical equipment is to call your insurance company, find out what they cover, and then go to your doctor to request that certain item. Some insurance companies only deal with certain medical supply stores, so finding out which ones to use is also important.

As far as exercise goes - I try to exercise every day. Even when I was at my worst, I'd sit and do stretches and "chair yoga."

Exhaustion is a huge thing to have to deal with. (I'm actually sitting her yawning as I type - I've been up for 45 minutes and could use a nap! LOL). I find scheduling "quiet time" into my day is incredibly helpful. I nap if I can. For me, making sure I'm well hydrated and eating a protein-rich snack helps me get through when I "can't" be exhausted. I carry Kind nut bars and a water bottle with me wherever I go!

Definitely mention all of this to your rheumy!

Yup, Mimi, I’ve been there, the same place you are and Nym (and plenty of others) have been. Michael mentioned the member who got the scooter. LOL, she’s so discreet! That was me. I was on holidays and having a desperate day, not having any fun at all because of PsA, and I went out and bought me one of these –

http://m.youtube.com/watch?autoplay=1&v=6xW2YM-4vSM&desktop…

It has been on streets, planes, cruise ships and subways. It’s been in stores, restaurants, parks and pubs. I don’t love needing it, but I do love the freedom it gives me. I haven’t used it much recently, but there’s something about having it available that makes me feel liberated.

My insurance wouldn’t pay for it because I bought it in Florida (that is, not from an approved Canadian supplier), but buying it then rescued me at a bad time.

The best thing is that I can dismantle and load it into my little Toyota all by myself. That sometimes attracts a bit of attention, but who cares! I have my independence, and when I have offers of help or a gawker, I get to meet some new people!

Yes Seenie, I give my secrets away freely but not those of others! call me an old nurse.....

I will be looking into a scooter like yours for those 2Xmonth pesky flares!

Maybe we can do wheelies together Mimi! I am going to look for a purple scooter! What color will you pick if they offer colors?

I can see it! Can I help paint when you get it? I am not an artist like you but I can get the paint from the can and onto the scooter!

Me too! Shall we get matching ones?

MY scooter has interchangeable colour panels – grey, blue and RED. Too bad I wrecked the red ones off-roading. sigh The guy at the repair shop told me I need a heavier duty unit to do that, but I want a scooter that I can throw in my car, so this is the one. And if it needs repair down the road, well, that’s just a(nother) cost of doing PsA business.
So when you’ve both got wheels, we’ll have to have a rally! LOL

Interchangeable panels ooo the possibilities!

You wrecked the red ones!?! Oh Seenie! Off roading no less! Too funny.

I see a rally in my future!

Mimi-

I have been told that a Y will never turn anyone down for membership due to money. So talk with the membership director and they will make arrangements for you. I have been a member of a local Y for more than 20 years and love the organization.

You are in my prayers. I totally understand and you are not alone in your frustrations. We are here for you so you are never alone in this journey.

Blessings

Sonna

mimiB said:

Hi Michael :) I am in the USA in NC. I need to check my insurance coverage. That would be great if they are portable like that !

I use a cane, occasionally, but when I hurt this bad it makes me almost feel woozy, like nauseated and completely tapped out. The fatigue combined with the pain and the last of the summer heat has been getting the best of me.

Speaking of exercise, how are we supposed to get it when we feel this bad ? If I went out for a walk, I would just croak.

I would love a Y membership, but again, the cost could be prohibitive, I need to check on that, because I think I could walk in the water in the pool

I have had flares, but this is the biggest, most long lasting one I have experienced so far. I hate to go in and tell the doc that I am worse than ever.

Thanks so much for all the comments, it really helps me keep the right things in focus.