Where's Seenie?

I’ve been MIA for so long that I don’t recognize a lot of the people on the board. A lot has happened over the last months, most of it same-old. So here’s my condensed, Coles notes, Readers’ Digest update.
Arava is helping a bit – pain down to, oh, 7 from 9. This, apparently, is good enough for the rheumy, and she doesn’t want to see me until April. :frowning:
Hip is painful. Had an x-ray. They thought it was AVN, but a nuclear scan showed it wasn’t. It’s “just” severe OA. So now I have an appointment with the OS. I keep thinking it is PsA, not OA. But what do I know? Bottom line is that there are sharp instruments in my future.
Went on holidays with my scooter (and my DH), and discovered that the UK is amazingly, wonderfully accessible. I rode trains and buses. It was really great, even though I’d rather be walking. Still, a good time, and it only rained 2 days in 2 weeks. Had some great fish and chips.
Came back to North America on a cruise ship. What a wonderfully indulgent treat. Ship had a roomful of computerized wine dispensers, and amazing offerings. I melted down and then made an executive decision that, instead of throwing myself overboard, I’d have one carefully-chosen 70mL shot (a few drops more than a 1/4 cup, measured with surgical precision) of special wine each night with dinner. Figured my liver wasn’t going to fail before hitting dry land. I was right.
Admitted it all to my family doc on my return, and she didn’t freak. I got bloodwork done, and liver enzymes are up from that minute amount of pleasure. So I’m back on the wagon. But the mini-tipple each evening was worth it. I’m not sure that Arava is.
My feet hurt and burn, my legs ache and my hip is a pain. Same old. Yesterday I did a small sewing job and my hands can’t do what they used to. The ab fab news is that I’m on a new anti-depressant which is doing my brain an incredible amount of good. :slight_smile:
I am tired of this disease. (Like everybody else.) Last week I bought crutches. It’s snowing outside. My house is a mess. The new puppy is adorable.
And that about sums it up.

Welcome back, and glad you had such a good vacation! I know the feeling with the sewing, although I think my biggest issue was the cutting part. I love my sewing machine. Sewing by hand, not so much. But after making a few cute little berets for myself and for a friend, I couldn't use one hand for a few days. Oh, and that part of my arthritis is OA also, not PsA.

The PsA part is actually somewhat well controlled right now by Arava, but we'll see what happens in the spring. That's when things usually go down the toilet for me. I'm hoping it doesn't come early again this year, as last year it started in March. Now my big complaint is that my suspected hair loss is no longer suspected. That plus the stomach upset is giving me a fun time with Arava. Are you having issue with side effects, or just lack of effectiveness?

Glad to have you back :slight_smile: …sorry to hear you’re possibly going to having a date with the sharp instruments
Big Welcome Back Hug x

Oh, Arava. I don’t think it’s doing that much for me, compared with its downsides. It’s very hard on the liver, and it’s very hard on my lifestyle. I’m a trained sommelier (I teach, or rather, used to teach, wine appreciation classes) and this not-a-drop thing is terrible for me. My hair is thinning too. No digestive dramas, though.
Interesting that things go downhill for you in the spring. Wonder why
Berets? Sounds like fun.

I see a lot of people on here think they have PsA in a joint that with diagnostic imaging turns out to be OA and they seem to think they should have less pain or immobility but is just not true. While OA is not an inflammatory arthritis it can have the same pain and immobility. My Reumy has been unimpressed by those results in me and has stated that while it maybe OA now but may be PsA tomorrow. I am not sure if she is referring to my "type" of PsA of all PsA but she says that P and PsA are opportunistic diseases. When I have injury to my skin I can develop P there. Where there has been injury or previous surgery to a joint PsA can develop. I am just saying....

Seenie I am so glad you are back. I have missed your wit and wisdom. I am so glad you had a wonderful vacation. I have been wondering about travel for myself and am so glad for your insights. I may gain the courage to try it is the future when and if I get a bit more control of my PsA. My son is in college and he and I love to travel together and when he is out of college we may give it a try. My husband, since the death of his son in Iraq, has refused to travel outside the USA. But I am not sure he would have been up for it even before that. He does not try to clip my wings at all and all most seems to enjoy my smal trips vicariously. He is just happier puttering around with his huge gardens and herds of chickens and turkeys. And he is still working; I am not. He does have some worries about my safety but if i am traveling with someone he has less concerns.

I am so glad you are back Seenie. You are in my thoughts and prayers. I am sending you warm hugs.

Gosh, Michael and Louise, thanks for welcoming me back. Didn’t really think anybody would notice!
What you said about OA/PsA is interesting, Michael. My knees (or rather, the ones I used to have) were diagnosed as OA. Subsequently, my rheumy said she’d bet that it was PsA that did them in. So now they are saying I have OA in my hip. Naturally, I’m wondering whether it is PsA. Can it be both? I worry about what joint is going to be next.
Thanks again for the sweet comments.

Seenie- The spring flare seems to be associated with allergy season beginning. The problem is that it lasts for a few months, and takes quite a while to recover from. Sorry about the hair loss. For me it's already hit the point that my temples are ridiculously thin, and I'm feeling very self-conscious.

Seenie- of course we missed you. I notice each and every person who is off this site for a while. I do hope they are enjoying themselves and not dealing with a flare. She may have been saying for me OA becomes PsA either due to the type of PsA or because we have been unable to slow it much. I felt it taking over my elbows last year now it is entering my shoulders were I have never had an ache or a pain, never mind injury ever. I did not mean to worry you. As you well know predicting this is impossible. We just have to accept with grace so we can use our energy to find the best life to live within the context of this paticular disease. Some people are better off and some worse off. We just have to develop the best life for ourselves.

Stoney- I have been embracing a flapper style with the help of a stylist. She cuts and colors it for me. I buty hats and ribbons and bands to decorate it and learn to style it from straight to wavy to curly depending on humidity and my weekly mtx dose. I kid you not certain high doses curl my hair! I don't know if this is of any use to you but I thought I would pass it along. I'll have to see if I can get my husband to take a snap now that I know how to upload to this site! I hate the little flower on my profile instead of my face!

Michael- I would love to see a picture. The funny thing is, my hair is very curly naturally. With the thinning on the sides, I'm actually getting less of a pouf now when wearing a headband or scarf. If this continues to get worse, I may need to get a new style. OR just leave it mid-length and cover up the hairline. We'll see how bad it gets.

Stoney- What have you tried for the allergies? Anti histamines or the allergy series? There is something there that is intriguing, allergies are an inflammatory response as is PsA. I wonder at the corollations but I am afraid it is way over my head. Intrigue for me, but I am very sorry it is so awful for you. I am sending you warm hugs and prayers.

Michael- Last year I tried taking Zyrtec daily, prior to the supposed start of allergy season, but it didn't seem to make a difference. Not sure of the exact mechanism, but my rheumy definitely is aware of this correlation to seasonal allergies.

Welcome back! I had wondered where you had gone! We must catch up would love the long version of your trip once you have recovered of course.

As for your pain being down from 9 to 7 it may be an improvement but it still is not good. I am starting to think unless we lay on the floorand act like a toddler having a tantrum we are destined to have doctors who think that we are tough cookies who can handle anything. I mean I am a happy person who tries to be polite and not whinge to much so when I see my doctors/therapists and so on I greet them with a smile and apparently if I am smiling I must be doing better at least thats the feeling I get.

Someone needs to invent a pain meter that we can stick on our foreheads that people can clearly understand. It could say things like "today my pain is about 8 but because I don't like to cause a scene or be the center of attention I am instead sitting here calm and quiet but if you ask me one more time if I am feeling better I may just have to take my cane and show you exactly what a pain level of 8 feels like".

I am glad you have a good trip and that your back we need to get together and chat about sewing I got a new computerized machine and it is awesome saves a lot of pain and can do a lot of the things I can no longer do by hand from letters to numbers to little flowers across a hemline anyway I could write a book here but in short I have missed ya and I am glad your back ^^