Hi there! I'm a 32 year old woman with lots of hobbies and interests. I'm a mother of three amazing kids, 11, 8, and 6 months. I've had mild psoriasis since I was a teenager, but my psoriatic arthritis didn't begin in earnest until I was in the second trimester of my pregnancy with my now-6-month-old daughter. I had symptoms of its onset much earlier than that, but it didn't get really bad until last November. I suffer severe pain in my back, neck, left knee, fingers, and feet. I have plantar fasciitis in both feet and achilles tendonitis in both heels. I was dismissed for quite some time because everyone chalked my pain up to being pregnant. It turns out they were wrong, it was not all in my head or all normal pregnancy pains. I was diagnosed at the beginning of July 2015. I started methotrexate at 12.5 mg this almost four weeks ago, and I will be tiering up slowly until I hit 25 mg per week. So far, it hasn't been as bad as I thought it would be. Some nausea and dizziness, but it is bearable. Unfortunately, it looks like I'm having some pretty serious kidney reactions that just started in the past couple of days. I'm hoping it's a fluke, and I am looking forward to the pain relief I hope this will bring. I've been tiering down my prednisone and only take 5 mg per day now. I'm hurting quite a bit, but I'm hanging in there and maintaining a positive attitude. :)
As for other things, I love to read, learn, knit, bake, play video games, play tabletop games, watch Doctor Who, and myriad other nerdy pursuits. I also love to rollerblade and hike, and I'm happiest when I'm outside.
I'm a social media curator for a Caribbean travel website, so I work part-time from home. My life partner also works from home doing remote IT management for a drug laboratory, so it's a pretty awesome set up with the kids when I'm having bad pain days.
I'm pretty darn active for how much I hurt, and I think that's a good thing. My kids are my light and my hope. If I'm having trouble getting up and doing my stretches, I think of them and hop to it.
I have to admit, I'm just really relieved to have a place to talk openly about this without fear of being judged. I feel like I am a burden to friends or family, so I keep my pain and lack of function cards pretty close to my chest. When I do let them out, I feel bad about it. Opening up with my loved ones without fear is something I'm working on every day. I also suffer from obsessive compulsive disorder, generalized anxiety disorder, and panic disorder. I'm well medicated for it, and it is well under control, but that fear of being open about my suffering with my loved ones is something I continue to work on. I feel like I can be more open here, among strangers. I'm currently reading Amanda Palmer's "The Art of Asking", and I think anyone suffering from opening up to loved ones could really benefit from giving it a read. :)
So, hello! Thanks for having me and it's so nice to meet you!
We’re glad that you found us, Stella, but what a shame that you had to come looking. It’s just not fair. It’s good to hear that you’ve started treatment, and GREAT to hear someone say that it hasn’t been to bad, working up to 25mg. It’s the people that have difficulty with it who post, and the people who get along just fine with MTX often say nothing. And then the poor newbies think that the side effects (which can, admittedly, be bad) are inevitable for everyone. Great to hear a “no drama” story.
It certainly sounds like you’re a very busy Mom, so I hope that the MTX helps in a hurry. Keep us posted, OK?
Nice to meet you too, Stella!
Hi Stella! Glad you found this website.
The best thing on here is the ability to be open about your symptoms. We don't judge. People who don't have PsA just don't understand! To me, it seems pointless to bother telling them because they look at me like, what are you talking about? I think that's because we just keep going, trying to ignore the pain, trying to seem "normal".
I've been at the same job for 15 years. I've always been embarrassed about my psoriasis and kept it hidden and, oh god, heaven forbid anyone outside my immediate family found out I had it! When I started having lots of aches and pains and started seeing a rheumatologist, I'd tell my coworkers I had an appointment for my "arthritis".
Finally, when I went on Enbrel last year, I got up the nerve to tell my friends that I had P and PsA. Omg, they looked at me like, wth is that!??? I tried to explain, but they totally don't get it. Now I'm wearing weird shoes for my damaged, painful feet, and I'm sure they think I don't have any fashion sense at all. My boss told me she has OA in her little finger. I have some OA, too. But, nobody seems to understand how terrible an inflammatory disease makes you feel.
Thanks for mentioning the book....I'd like to read it.
Oh, and, you'll be surprised if you stick around--these strangers can become real friends!
Hi there Stella and welcome. As you can see these guys are a lovely supportive bunch. Great to hear you have such a fantastic positive attitude. For those days when you need to rant though - this is the place of broad shoulders and good solid advice.
Like you I have very little side effects from MTX and the guys here advised me to drink lots on my dosage day - and let me tell you that little nugget of advise is a pearl. I take an extra litre of drinking water to work with me on dosage day and I generally drink that plus more. I only get any side effects if I forget to drink enough. The MTX helped a little, but not enough and I have only recently (6 months ago) started biologics (Enbrel) I have been going really well, but a massive cold winter here down under is kicking my butt. However we keep soldiering on and plaster a smile on our faces and say "great" when people ask "How are you" because they really don't want to know.
Gentle hugs to you and your little ones for continued sunny outlooks.
Bec
Hi Stella. I love your attitude, it's obvious you're up for getting the most out of life whatever the circumstances.
Everything has a downside, there's no such thing as a perfectly rounded human being. Those that are most positive often do seem to find it difficult to convey their fears or need for help. And admitting that we need some help or simple understanding can feel like a loss of control. I think if a sense of control is a must for you, you can gradually work out ways to let others in that do not make you feel helpless. For example, spending time working out who would most like to help .... and how to ask .... and exactly what they could do that would help most puts you firmly in the driving seat. I bet there are people around you who want to know how you are feeling and would be up for peeling more potatoes or whatever!