The Waiting Game

Anyone else playing the waiting game?

Waiting for meds to work?

Waiting for more tests?

Waiting for an official diagnosis?

Waiting for warm weather? LOL

I'm waiting for MRI #3 (thoracic - already had brain and c-spine) a week from Monday, and a follow-up neuro appointment a MONTH later before I can possibly get some sort of neuro diagnosis - or be sent for more testing. If I get a diagnosis, we go from there to see IF I can go back on PsA meds, and then figure out what med I can take. My mom can tell you that I've never been good at waiting. I suppose I'm getting a lot of practice now, so I should be good at it when all is said and done! ;) Oh...and I'm waiting for insurance to decide to cover MRI#4 (lumbar), since I have a bulging disc and partial SI fusions that could very well explain some of my issues....but it seems they'd rather cover MRIs for places I haven't had proof of significant issues first!???!!!??

What are you waiting for? Maybe we can all wait impatiently together.

Nym, you've always got so much encouragement for everybody and you have so much to deal with your own health! I hope you get answers soon. I can't imagine the worry and stress this causes you! Hopefully, you'll get the DX you want so you can go back on PsA meds. Take care!

Hopefully there isn’t anything wrong! If it happens to be MS (a specific type) there is a drug that works on all three. The drug isn’t approved for PsA yet but does work ok for it. That drug contains DMF, not sure the name for PsA.

Well hopefully it nothing - best of luck!

Nym, I think waiting is so hard to do patiently, whatever we’re waiting for…I’m another one who finds the waiting nearly impossible!
Keeping my fingers crossed for you xx

Nym, with the seriousness of your symptoms, waiting must be even worse than usual.

Personally, I'm waiting to have useable health insurance again. Somehow, the geniuses at healthcare.gov failed to send my application, dated December 8th, to my insurance company. We figured this out a week ago, after hours on the phone with the insurance company. The last person I spoke to at the exchange said they may try to get that information out within 30 days or so. She also said they do this to lots of people (!). I did pay the January premium, so if the you-know-what really hits the fan we may have coverage.

Meantime, I've cancelled an appointment with my ortho to get the results of an MRI in late December, and will most likely have to cancel next week's appointment with him, too- that office is hospital-owned and they sure know how to write up a bill. Cancelled this week's biologic shipment, and will have to quit MTX next week, as I am pretty sure my rheumy won't authorize a new prescription until I have blood drawn. I'll pay out of pocket for an appointment with my endocrinologist today, and have paid full pop for other prescriptions.

So yes, waiting for lackadaisical government employees to fix a problem they created and won't take responsibility for. Waiting to find out why my post-surgical shoulder is such a dysfunctional mess. Waiting to stop worrying about the son 2000 miles away with no proof of insurance. Waiting to be able to afford labs, appointments, and meds.

Waiting and worrying. The worst! I hope you start getting answers soon, Nym.

Thanks for the kind words, everyone!

Louise - Oh, no! I hope they get it sorted out for you QUICKLY. Going off meds isn't fun at all. and having no insurance coverage when living with PsA can be scary.

Yes, I totally relate to the waiting game! My employer screwed up our open enrollment put everyone in a high deductible plan meaning until today everything’s been out of pocket while they do the paperwork corrections since Jan 1 st. Meanwhile I started sulfasalazine just to find out I am allergic to it and finally on full dose of methodextrate but had bad reaction to the 8 pill dosage. Major migraines and vomiting but for first time some pain relief from flares since taking it. Odd since I was tolerating it very well before. Not sure of the trade off on that just yet but with norco barely helping its something to consider.

Waiting for meds to work sucks! Waiting for my family or coworkers to understand sucks just as much! Waiting for myself to accept this is by far the worst! Even if I do, I have not figured out how I can possibly keep my head above the water. Can barely perform my highly physical, great paying job. It supports my entire family, covers insurance and in many ways defines me. I cry myself to work about 3 days a week waiting to see what painful task is in store and waiting to see what part of my body will rebel. I try to have faith and do believe this will get better, ( meaning that I will eventually feel better) but waiting to find out if I can hold it all together until I do.

Knowing you and others feel the same helps me find some patience. None of us are alone even though our situations are all unique they are also so very much alike.

Hugs, Rachael! What are you taking for treatment at the moment? Are you / is your doctor open to adding prednisone to the mix to get you through?

Waiting for meds to work does suck. One thing my family/friends don't seem to be able to grasp is that once I get a diagnosis from my neuro (IF I do), which could be at the end of February, or after more testing after that, we have to figure out WHAT to put me on to treat my PsA and then it will take months for whatever it is to work, if it works. Best case scenario, I might start feeling better sometime in June. That's crazy to think about in January, but I try not to let it get to me. This isn't the first time I've had to go off meds in order to undergo testing. I think it's easier not expecting to feel better anytime soon. If I know I'm going to feel like crap for a while, it's somehow easier! LOL

Oh yes have done 2 predisone tapers already. They help more than anything so far but short term fix for the last flare. I also use indomethacin which works for swelling. Have norco but can’t use it when working for safety reasons (industrial environment and driving etc). Did talk with my rheumy yesterday and going to bump back to 6 methodextrates this week and see how that goes again. If good will increase slower and hope for no reaction. Waiting to hear back from insurance to see how much if any of tier 5 they cover so can try enbel if needed next. Still have to play the waiting game with metho haven’t been on it long enough to see full results yet. Got my fingers crossed because I really love my job and it pays better than anything else I’m qualified to do plus everyone counts on me. 3 kids and my hubby a lot of weight on my shoulders. I know what you mean about waiting for results thought this was an osteo issue and missed work because sweeling dislocated a rib ( this has happened many times in past) was expecting quick recovery. This year they changed our attendance policy to 6 days a year and fired at 7 unless FMLA covers it. Scared to tell them too much just yet since I only know what to expect day to day so far. Fortune 500 company that cares little been there 18 yrs and according to them everyone is replaceable. I guess we are getting a crash course in patience. Sounds like it gets better and at least time flies right?

It gets better. :) Time, well, that depends. I think I'm so used to the wait that I found that I was shocked today when I realized my MRI is on Monday ... the word "already" came to mind. I hope the next month (waiting for my follow up neuro appointment) goes as quickly!

Rachael, that company must be run by someone who has never had the misfortune to become ill or injured. Shame on them.

Nym, glad to hear you have an appointment tomorrow, and I hope you're home before the snow starts- aren't you a New Englander? One step towards getting answers.

My insurance company finally got the info from the exchange, so it looks like I may have useable coverage again. Not sure if that means I "get to" or "have to" keep the orthopedics appointment. I'm not sure I really want to hear what he has to say no matter what it is. "There's nothing to be done, just live with it" or "Yes, this needs to be fixed", neither one is good news.

Nym, just wanted to wish you good luck today! I had my second bad reaction to methodextrate and had really bad migraine unable to work. Just got a pain pill to finally break it some. Thought about you as I was waiting for rheumy to call back. I don’t know if you get results right away usually have to wait. Too bad we aren’t waiting for fun things like Christmas morning or a great date! Now is just test, refills and appointments over and over. Lol

Just waiting for the pain killers to hopefully kick in so that I can maybe get a few hours sleep tonight.

I had to cancel the MRI due to the blizzard here in CT. :( I call back on Thursday to reschedule, and hope I can squeak it in before my neurologist appointment in February.

What is it with insurance? I got my re-evaluation / renewal notice four days after the paperwork was due. I spent nearly an hour on the phone and got it sorted out, thankfully.

Tonight I'm waiting for the kids to go to bed (too excited because of the snow!), then will wait to fall asleep, and then will wait for everyone to dig out after the blizzard blows through so I can resume waiting for medical stuff. Maybe I'll choose to see being stuck in a mound of snow as a vacation from waiting. LOL

Here's hoping they can fit you in quickly. I had my last MRI done on a Sunday morning. I guess the imaging center sunk enough money into the machine that they keep it fired up seven days a week. You might ask if your place has any odd-hour appointments open. Also, tell them when your follow-up appointment is, and that you really need the results by then. Maybe they'll squeeze you in somehow.

That's the plan, Louise! :) I'll basically take any appointment they'll give me. Thank goodness I have teens and can leave my kids "home alone" if needed!

Nym, hope you find answers soon....and hope it leads to good news!

Well more waiting for you sorry to hear. Hopefully time flies by quickly again. Did you enjoy the snow? Heard your area actually got the best of it. Waiting again on my end. New info on new meds coming soon in mail that I pray work better than the last two I have tried.

New MRI appointment is February 18th ...one week before my follow-up neuro appointment, so apparently timing of the neuro appointment was spot on. If it snows on the 18th, I may cry! LOL

My health is continuing to deteriorate, but I'm trying to find the humor in it. This morning I said to my husband, "I had such big plans today, but now I'm not so sure." His response was, "You mean something like getting out of bed and doing something constructive? That's highly overrated." I'm so blessed to be married to that man! And yes, I'm getting up and moving as much as possible ...and falling, and bashing into things, and accidentally launching things across the room when my left hand forgets it's holding things.

Thanks, sunshine!

Rachael - I hope the info brings you exactly what you need!!!

Thanks Nym! Me too! I’ll take your snow for you. It’s been an seasonally warm winter here in the Northwest almost no snow at all dusting’s only. Hope you get to keep the appointment and at least get some answets after such a long wait.