Hello everyone, I have been on the board for the last few days but finally will introduce myself. My name is Jayson, I’m 33, married with 3 kids ages 8, 7, and 2. My journey started last April when I mysteriously injured my thumb. Couldn’t move or touch it. Several x rays showed nothing, finally after 6 months 3 X-rays and an ultra sound they determined that I torn a ligament. Just as I was starting to get movement back in my thumb I developed Plantar Fashitis in my foot. My GP was treating each condition seperatly as they were months apart. Then I had pain in my shoulder and hips and he sent me for a blood test. Results came back that I had 3x the amount of inflammation that I should have so he sent me for another blood test just to confirm. Same results so he booked me in with a rhumey. 5 months it tok to get in and with all my conditions they were able to piece together this nasty condition. It has changed me tremendously however my situations haven’t. I still work 40 hours a week and commute 2 hours everyday. I’m the only driver so I tend to do most of the shopping and I get all the heavy jobs. The biggest change has been walking with a cane. At first I was a little embarassed but my co-workers are perfectly fine with it. I’m an IT consultant mostly doing server and system administration. I find it difficult to concentrate at work when I’m in pain and I think my work is suffering a little too. Recently there have been big changes at work, the team I was on was cut from 5 down to 2. I keep getting told (indirectly) that I’m too valuable and they don’t like me taking days off (too bad for them). My kids are starting to understand what this means for me. I can ask them for something and they’ll bring it to me. The baby loves being helpful, but my 7 year old has his own issues (ADHD). Hopefully soon well have his under control enough. My wife I don’t think understands, she’s loving but not very supportive when it comes to the household chores. I still seem to be doing the ones that are pretty difficult. She’s gone through her own issues recent but she thinks she’s got hers under contol. She may be allergic to milk including lactose free milk. I hope she comes around soon and realise just what type of pain I’m in. I’m glad I found this site as I’ve always been on forums for my cars and other interest. I was surprised it took me awhile to find it. It’s not at the top of searches for psoriatic arthritis forums (but it should be). Everyone seems to be so friendly. See you in the discussions. Thank you!
Hi Jayson, and welcome!
Getting people to understand disease can be some of the hardest. We have a son who was diagnosed with a rare hip disease at 7 and even in pain he was a kid and wanted to play. When he lost the ball of both hips he could still walk and I had handicap plates on our car. People would glare at us going into a store as he skipped in. I had to tell one person "See that kid? He has no ball in either hip-I don't know how he does that, but in 20 min. I will be carrying him out to the van crying in pain." When I had another autoimmune disease, I had good days and bad and often didn't complain even when it was bad. People would say, "You don't look sick!" I had necrotic ulcers covering my legs the size of half dollars that went down to the muscle. I would pull up a pants leg...That stopped them short. But why do we have to do that?
One thing you can do is to work to schedule doctors' appts and tests all on the same day. That way, you aren't taking off "here and there" for bloodwork or rheumatologist, etc. Explain to your boss that you value your job and because of that when you do need to take off for appts you will coordinate them to all be at the same time to minimize your time away from work. Also, by getting treatment quickly it will get it treated faster so that off time will become minimal. Just like any preventative maintenance program, there has to be occasional down time to maximize up time. :-)
For your wife, explain to her that autoimmune is somewhat stress related and that as a team each strengthens the other. Marriage is the epitome of unselfishness and you were meant to help each other be the best you can be. Neither was meant to be the sole bearer of family or life's burdens. Sometimes wives feel a little scared that their "protector" won't be there. Encourage her that you will be there for her and you need her just as much, because you love her. Tell her you want her by your side and that together all work out. She will appreciate hearing that.
You will find tremendous help and guidance here and we're glad you found the forum!
Welcome, Jayson! I'm sorry you've joined the club, but I'm glad you're here!
I can well imagine how hard it is to cope with this condition with a job and a family. Hang with us, and you'll find that we're a pretty supportive and nice bunch of people.
Hi Jayson, and welcome to the message board! I can so relate to your post. After many years together, my husband still sometimes becomes quite impatient with my arthritis and associated limitations. I wish that he would turn his testiness about it at those moments toward my PsA and not toward me! But the truth is, I get impatient with my situation, too. So when he is hurrying me to get dinner on the table while I am struggling, I just try not to respond to it anymore. I try to remember he is dealing with something he didn't ask for either. That said, there are times I can't do that and there is a little exchange of fire! It's part of this illness, I'm afraid, that it affects every part of our lives. The good thing about this forum is that there is always understanding and patience here!
I'm glad you found this group. I'm glad I found it too. It is sad to hear that you are not getting the understanding you need from your wife. I guess PsA adds another dimension of complexity to relationships. Maybe you could read through the posts on here and show her some of the ones you can relate to. It is a particularly difficult condition as it is so unpredictable, but it might help her to understand more. I guess it is difficult for partners too, but then we end up feeling guilty about that on top of pain and frustration from the PsA. I live on my own, with 2 kids half time. This is great for me, but sometimes scary. Such is life. Thanks for introducing yourself. I am sure you will find plenty of support and compassion here, and I hope that things change so you don't need it, or any of us for that matter. It's nice to not feel so alone. Shel
Welcome from a fellow newcomer here. The people here are a wealth of not only knowledge, but compassion as well. I have read a number of posts with spouses who don't or can't understand what your body is feeling. It took sometime for my wife to realize just how serious the pain was. I started by asking her to accompany me to the Dr's, and it didn't take long for her to see the severity of it all. We are now all in 100% in each others health needs as well as all the emotions (and there are many) that go along with it. I wish you luck, and am sure you will find some good advice on this site. Stay well
I am a newbie too, having just found this site recently. I am glad that you found the site though as I am finding it quite helpful, I am sure you will too. It is really hard for others to understand what we are going through, although I think people genuinely TRY to do their best. It sounds like you have a really full plate with your demanding job and three kids...I don't know how you can do it with this horrible disease! Some days I am lucky if I can do the laundry....I am on Long Term disability (originally from 3 spinal surgeries form spinal fusions and resulting chronic pain, but now the recently diagnosed Psa) for the last 10 years. I really commend you for still being able to go to work and fight on daily like that .....good for you! This disease is HORRIBLE, but I hope that you can find some support here, with us fellow sufferers! Welcome to the "club"!
Thank you all for the warm welcomes. It is nice to talk to people who understand and I'm already learning more. I'm becoming more comfortable with myself after reading or chatting about your symptoms and how you are coming along in your treatments.
When I had my appointment with my Rheumetory Athritis specialist I was figuring it was going to be a quick introduction. I was surprised to be in the office for over an hour as they gave me a good look over. The student he had working for him seemed confident that I will be back to normal quickly but at the same time she dropped the bomb on me that this was a life long struggle. I think it hit me hard considering I'm still young and have a young family.
Welcome, Jayson! The most difficult part for many of us is coming to terms with the concept that this is our life. For some it's even more difficult to accept that because of this, there is a new normal. I was diagnosed less than a year ago after a lifetime of joint and exhaustion issues and strive every day to see and live the positive.
I'm 37 and have five homeschooled kids (13, 11, 9, 6 and 4) and 3-5 days a week have any combination other children in my care, ages 7 months, nearly 2, 3, 4, and 5. It can definitely be a challenge, but the kids keep me moving...and on days when that doesn't work, they pile on my queen size bed with four inches of memory foam (which is conveniently located in our living room) and we read books, play games and lately watch documentaries and Dr. Quinn Medicine Woman.
Hello Jayson! I'm a newbie too and found it so reassuring to find that I am not the only one suffering this weird illness. This is a great forum for learning more - apart from the one about giving up potatoes. That one doesn't work!