It's been a long time since iI actually posted anything personal about me. Sometimes its difficult to be a moderator and be a patient. I feel like we're supposed to have everything together and be functioning well, and hunky-dory all the time. The truth is that we aren't always doing great and personally, I get cases of the "woeizme's" and feel really sorry for myself. This is one of those times.
Last November, Remicade stopped being effective for me and my Rheum switched me to Enbrel. Unfortunately, my body continued to deteroirate and after almost a year of Enbrel we called it quits. My new drug is Cimzia, and I have just finished my loading doses so I have been taking it for 6 weeks. There is very little improvement. I have joints that are permanently swollen, red or blue, and very stiff. I have difficulty continuing with any activity for more than a half an hour and pay in more fluid accunulation in the joints that I used.
In June, I had to resign from my wonderful, prestigious job that I loved and had worked my entire career to get. That was really sad. I want to still be practicing, but I didn't bother to even renew my license this year. I don't have the stamina for that sort of work now. I do have the BF communities, and i try to stay current, but after taking off of disability, I was really down and hid under my rock instead of contributing here. I felt like I didn't have the emotional energy to help people anymore.
I just wish my body would get better. I worry that I may not be able to survive the cub scout camping trips this year or take my boys backpacking. My doctors are good and will help me with extra pain meds when I am going to tax myself like that, but it is still takes a lot of determination to make myself do those things. The last time we backpacked, I thought we were going to have to call SAR to come get me. I made it, but had to spend the week in bed.
My husband is loving and supportive, but I feel like my illness depresses him at times. I know there is a financial strain as we wait to hear from the disability insurance co, and I try to be cautious with spending. I am glad to have him and his love.
I thank you for listening, I just needed to say these things and to admit my feelings to someone else.
Oh Grumpy, you help people whatever state you're in. Someone somewhere reading your post was comforted just by knowing that they aren't the only one feeling like you are right now. It sucks, and I'm sorry. I'm glad you're back. Hang in there and hang out here.
I get the woeizmes quite often. Then feel a tad guilty if I post about it. Which is ridiculous .... I'm a voluntary moderator on an online community, not some bloomin' guru. And one of the main reasons for posting here is that the full-on woeizmes need to be articulated before they can be un-picked. I find I kind of crawl towards understanding what's happening to me and helping myself, I inspect one aspect at a time, I address one aspect at a time .... and I need input, I need inspiration and the knowledge others have. And I need support sometimes.
You have great knowledge and you're strong in so many ways, anybody reading your posts can tell that. But I'm glad you've told us how it is for you right now so that we can try to help or at least we can listen. So many changes, and not the kind you want. Your head must be spinning.
OMG, you guys don’t fly around this site with capes? I thought you all were superhumans! Just kidding! But my point is we are human and we all spend a lot of time pretending the world is a perfect place. If you can’t express real feelings here then sign me back out. I am so sorry you had to resign that had to be a hard thing to do. Funny how we let our jobs define so much of who we are but as you made clear we are so much more. I detest the person who made up the phrase “when life gives you lemons, make lemonade” they didn’t have PSA because they could squeeze those lemons! But on the other side we have family and hope to hold onto which is much softer than s lemon to squeeze. You sound like a wonderful mom and I am sure your kids know that and you make daily sacrifices they will always remember because you are there. Maybe not every scout retreat but daily. I relate sooo much to what you have said there are days I feel very down and the idea of getting out of bed seems harder than anything the day can bring. You are very fortunate to have a supportive hubby that on itself is a blessing. Thank you for sharing and please continue to do so!
I am sorry it is hard for you right now and good on you for posting. It's so unfair that you had to stop your job. Keeping hope alongside you that the camping trip will work out.
Since joining this group only recently I have thought how hard the moderators all work to support the group....what a big job on top of life and your own PsA journey. I am very grateful for all the work you and other moderators do. What makes this group strong is peer support by peers and supporters....we all are entitled to woeizme's ....otherwise this group wouldn't be peer to peer....it would be something else.
I am convinced the woeizme's are 'strenthening medicine' (borrowed from Kanga in Winnie the Pooh)....hoping you are walking the hundred acre wood again soon ☺
MacMac, the moderators get our strength from you, and everyone else who posts and shares the ups and the downs and woeizme's. Thanks, though, for the compliment! It means a lot.
MacMac said:
Since joining this group only recently I have thought how hard the moderators all work to support the group....what a big job on top of life and your own PsA journey. I am very grateful for all the work you and other moderators do. What makes this group strong is peer support by peers and supporters....we all are entitled to woeizme's ....otherwise this group wouldn't be peer to peer....it would be something else.
I am convinced the woeizme's are 'strenthening medicine' (borrowed from Kanga in Winnie the Pooh)....hoping you are walking the hundred acre wood again soon ☺
Thanks for the replies everyone. I have just been blue lately. Usually, I do okay with coping, but some days I just feel so blah and want my old life back.
You know what, GrumpyCat, you have every right to have the woizmes!!! You have suffered so much and yet, been so helpful to those of us who aren't embarrassed to complain on here--I guess, if we can't talk about it here, where do we go for support and comfort?
When I hear from you younger people about all the pain and the physical challenges you're facing and so young yet, it just breaks my heart. And, I'm thankful that I didn't have to deal with it until my 50s....I almost feel guilty for all the complaining I do! I think of how sad I would be if that was my child or grandchild....I'll take all the pain in the world if it would mean they don't have to! And, I'm sure you hope and pray your kids don't have to suffer like you.
I know it's discouraging when one biologic after the other fails! Maybe Cimzia will be the answer--maybe it'll just take a little more time!!! We will all be hoping for you!