Hi Pitac - thank you for listening and your responses. I think I exhaled for the 1st time in a long time. 😌 It takes so long for diagnosis, and that's just the first chapter...I sure have a lot of planning to do ahead of me now. Medicare does help some, but it means random strangers in the house with her, so we opted out. (safety/security) I do get respite 2 days from known caretaker & we hired a landscaper, (so grateful) but that's what I enjoyed doing...I adore nature too & love to be under the sun & moon. (Northern lights were phenomenal in your prior post) God is so amazing. I'll look into disability - can't believe that word is in my vocabulary now? My career didn't just take a hard left, it exited the freeway all together - bothersome after working so hard for so many years, but there are so many more important things. I just would've like to have finished strong. I've signed up on all doctor's & lab portals for my results, so I'm ready there. Scared for biologic. I also have asthma (since birth) & I already catch everything even taking vitamins & supplements now. (Uggh) The battle is real that's for sure. Bless you with good health & lots of love and support. Thank you for the tips Pitac! ❣️

@A MySpondylitisTeam Member. This is a good site for you because we all understand only all too well the drastic shift in lifestyle, priorities, ever changing and new health challenges. It is a reality none of us were the remotest familiar with before we were struck by it and there's unfortunately very little guidance from the doctors. That is partly because it hits all of us a little differently, which makes sense because no two people are the same (captain obvious). It is also because there are not enough doctors to patients with the largest percentage of the human population in the developed world (baby boomers) being over 60.

I understand how you feel about hiring a landscaper. That was hardest for me because I am a Master Gardener and that was my zen thing. I cannstill get out there for a brief time and I do on nice weather days. But the past 4 years I've been fighting hard to not be completely crippled and there's just no way I can do it all now. I also understand about hiring household help, I hate strangers in my home. But that's something that I'll probably need to do sooner than later too. 😒

Biologics didn't work for me. I have Psoriatic Spondylitis with full body involvement, axial peripheral bilateral. I could list everything here, but I'll spare you the novel😊. I tried 5. They either did nothing and/or the side affects were worse than my disease. As an alternative I began doing a bit of research on little known antioxidants. The known ones, like what are in fruits, veggies, and herbs were very helpful in improving my disease level, but some lesser known ones have been as good as the biologics are. If you want more info on that I encourage you to read my profile and then also click the updates section.

Navigating this site is tricky. When you want to get a particular member's attention address them directly as I have done in this message with "@name." That way the member receives an email notification. To read another member story and updates click on their icon photo to go directly to their page. When reading their updates, they are listed in reverse chronological order. Scrolling down the updates page there will be a break in the bottom. Continue to push the scrolling button will take you further back. I often list a few lesser known/discussed treatments in my updates, including the aforementioned antioxidants as well as stem cell therapy I have most recently tried.

Feel free to reach out to me or anyone else anytime Renae. We are all in this together and I doubt you will experience anything any different than what many others here have. The experience of others can be far more valuable in your treatments going forward than anything the doctors give you.😌🙏

Mentioned Users

A MySpond...

Hello Renae, did all that unloading help you? Thats fantastic if it did, thats what this site is here for, sharing your concerns as well as what helps others that might help you.

For whatever it's worth, if I were in your position, I would claim disability, you can go online and check qualifications etc. Then I would hire a home care giver, a weekly maid, and a yard service if applicable and affordable. Medicare should cover the home care aid for your mom.

The only other thing I can think of is to keep up with physical therapy based exercise regularly as well as look into a high antioxidants and high protein diet..most antioxidants are anti inflammatory as well as vital organs and immune system boosting.

Get copies for yourself of all your blood work, especially while on biologics so you can keep track of changes. Biologics will definitely make you more susceptible to every infection possible and make it longer to fight off, the trade-off for hoped for pain reduction. Ask yourself what will happen to your mom if you're too sick to care for her. Again, call Medicare and check on home care availability for her. You must take time out from her to focus on your own needs. Afterall, you can't help anyone out if you're in bed because you didn't take time for your needs. And yours are a full time job.😌🙏