I have been a member for close to 5 years. Most of my involvement has been with reading discussions and learning from you all, as my psoriatic disease has progressed. Initially, after being diagnosed with PsA , my situation involved multiple joint issues. Then enthesitis was diagnosed, then cardiac problems with irregular heartbeat (started on a medication for this ), frequent respiratory issues, GI problems, and started to become allergic/sensitive to a long list of medications (antibiotics, pain medications, etc)......My Rheumy and cardiologist both feel that all of these issues are due to inflammation within my psoriatic disease. Many medications have been tried with No positive results....methotrexate, sulfasalizine, plaquenil, enbrel, humira and remicade. I have been on prednisone on and off for years. Due to try simponi soon.
I realize that I am in the minority for not being able to be helped as of yet by any medication.....I have not and will not give up my hope!!!!!! I have great doctors....especially my Rheumy. I call her my "WARRIOR" !!!!!!! I continue to educate myself, adapt, accept and to be the best advocate I can be for myself.....working with my MD's for SSD, handicapped parking permit, medical marijuana, etc......
I have worked hard to emotionally come to terms with this "WILD RIDE"......I have grieved losses, learned to get creative/adapt with everyday challenges, reclaim my power/control of my life, to laugh more, to see beauty/happiness in simple things and realize that what makes me, me.....such as my heart and my mind are intact, in fact I am very happy and a great deal wiser.
Well....I wish you all a great day.....and I thank you all
Thanks for writing this, Susan. While most of us get relief--sometimes only periodic--there are those among us with the disease for whom relief is just out of reach. I'm glad that you keep striving for a solution and that you have a fierce doctor who can advocate for your care. Keep us posted about your progress. Best to you.
I hope you're "in the gap" scienceteach. I was there for about 8 months in the beginning. It felt like an eternity. Hang in there and keep you doctor (and us) up to date with how you're doing.
Scienceteach said:
I hope I am not one that relief is out of reach. I am still waiting 3 months of medications and still feeling worse everyday.
Right off the bat Susan I am so impressed by your positive attitude considering a “ride” that I would confidentiality say probably has been a struggle. Yet, you did not describe it like that and for me .Rather than stay negative and be “woe is me” is amazing, we all have our moments ( I know I do) but like you said we adapt. I feel as if I have not found the light in med treatment either been almost 2 yrs from full blown symptoms but not the right mix either but hopful with my newest regimen. Anyway, nice to know you finally chose to enter the discussion sounds as if everyone has made an impact for you regardless. Hope you’re able to find some balance and remember we all love to chat. Take care!
Oh My.....Thank you all for your replies !!!! I truly appreciate your kind thoughts. Yes Rachael.....I do have my "moments....usually about every 2-3 months I wake up in the morning feeling quiet. I have learned to allow myself to take that whole day to just feel everything that is washing over me. During many of those days, I have not even gotten dressed. Every thought and emotion that comes into my mind, I think about....I don't disregard or ignore any of these things. If I cry...I leave those tears on my cheeks, as a way of validating what I have gone thru. I don't try and push thru or pretend.....I give myself this whole day to just strip everything away and look at the stark reality of loss and change. Then the next day and days after, I start over and go on with my life in a positive way.
Also......With so much research going on, I KNOW that someday a medication will work for me.....I have no doubt. In the meantime....I will continue to wear my seat belt during this "WILD RIDE" !!!!!! :)
Thanks I hope so too. I am up to 20 mg methotrexate on gabapentin and enbrel nothing yet. I am 4 months into enbrel 3 on methotrexate still hopeful and waiting.
janeatiu said:
I hope you're "in the gap" scienceteach. I was there for about 8 months in the beginning. It felt like an eternity. Hang in there and keep you doctor (and us) up to date with how you're doing.
Scienceteach said:
I hope I am not one that relief is out of reach. I am still waiting 3 months of medications and still feeling worse everyday.
Oh no when I first joined here I really couldn’t bear to read stories where people weren’t being helped my medication. Now I’m on month 16 of methotrexate and 4 injections in on humira - no discernible improvement and starting to think maybe it’s time to call a halt to new experiments … Enbrel did not sit well with me! Now, reading this I feel I may have to carry on, but some days I’m just so tired I don’t want to. Tomorrow will be different and I hope we all find that something that works for us …
Susan, that was a beautiful post. Thank you so much for throwing those good things out there in the cosmos. Don't feel alone in the lovely bubble that is "people who have not yet found relief through medications." I am there, and have been for years. I'll find a combination of meds that seem to be working, and I get really hopeful that THIS blend will be the ONE...only to have them stop working after a bit. But I go back to the doc, and tweak the meds - both doses and medications - until I find another combination that works for a time. Truthfully, over the last 4 years I've spent more time not being helped by medications than seeing a positive difference, but that's okay. There are lots of meds out there, and the weeks or months that are even a little bit better because of a certain cocktail of meds makes the journey just a little bit easier and the ability to hope just a little bit more rainbow-and-unicornish.