I also have AS 37 now dx 33. I don’t have much to say that I don’t say often or I haven’t said before. Never give up, always stay vigilant and keep fighting! I’ve been on this rollercoaster 🎢 for awhile now and it’s better when you find balance, new limits and keep trying to move even when it’s hard. Pt physical therapy as well as stretching 🙆♀️ can help. Massage helps. I’ve tried everything from acupuncture, vitamins, took the whole pharmacy and what I learned was figure what helps you and what works for you and keep doing it. Try not to over do things and watch your stress. Breath work and mindfulness as well as meditation can help. Your whole garden needs tending too not just one part of you but all of you. From mental health to your self love/self care to your heart to your muscles to your bones and so on. This is a long journey but you ain’t alone on this path it’s dark I know but there’s someone fighting the similar battles and what works for one may not work for you. Never stop trying to learn. Know tomorrow is a new day and a new beginning. We can’t cure AS but we can fight it! Fight on men & women! Most women aren’t afforded a diagnosis you know. Women do and can get AS too! It’s not just a man’s dx! I know more women with it than men myself. My mom likely had it too. She lived in electric wheelchair 40-50s when she passed away from cancer after fighting never ending battles herself from lupus sle to losing her memories then her mind until cancer took her. I have more than one auto immune too. Often we have more fights than we do energy but we must keep fighting. I fight for my husband my rock and my person who makes me feel whole. My special needs teens who I love dearly and would do anything to keep being able to stay here to see them grow up. I had to change everything from the top to the bottom. From how I looked at things to how I lived life and find new ways to make it better. From diet to my mental health. I had to work on too many things but I did and it helped. When I was dx I was 33 dr have me try 2 biologics failed allergic then remicade infusion and methotrexate as I also have RA. This is what’s helped me most as well as stretching and moving. I’ve had to use a wheelchair and a cane but now I don’t. I have to say the hardest thing is finding our footing on this new land we find ourselves. We can’t fill either from an empty cup. I also found getting to sleep issues and finding good sleep had helped all around. But I couldn’t do anything if my drs didn’t listen to me. And they don’t always listen. Most ignored me even when I have major serious medical issues needing surgery even. Drs would rather send women to psych than treat. Plain and simple! We have to fight this to get help. I had to fight 20s-33 to get help! I saw in my mid 20s a rheumatologist Kaiser pacific beach ca she didn’t read or look at my chart or labs or me! She said she had real patients to tend to and I was not to see another until 33! Then dx after dr waiting on dx because he wasn’t sure because it’s a man who have this AS he said. Nope wrong sir women get it too! Fusion of spine was nail on the dx! He dx me then. And biologics trials started. A great partner and a good Therapist goes a long way! I am a medical zebra you won’t meet another like me or anyone who is not more determined to never give up! Stand tall! ❤️ Keep looking for drs who will help and fire those who don’t. You deserve help! You aren’t alone.
I have been in a mask 😷 since 2017! I wear it everyday when out! Mostly I only get to go to drs and can’t explore the world as I once did. When I was dx I was walking 1-10 miles a day. Finally had to accept my body can’t handle more than a block now. The hard realities some may never know.
My dx is long mostly these – pcos, pericardial effusion mild, trigeminal neuralgia, fibrous dysplasia polyostotic, rheumatoid arthritis, ankylosing spondylitis, sjogren’s, raynaud’s all diagnosed & mild PsA but waiting still 2 years on dx still for that just what my dr said rheumatologist it likely is. I also have malar rash on face since 20s. Most likely my AS started 19-20 when I have my daughter. JRA still sometimes have issues with RA. These are just small amount of my whole 2 page dx list. 😔 It’s too much to type or speak. Pardon typos I am also dyslexic.
I go every 5 weeks to cancer center for my Remicade infusion I do pre meds too. I show up ready to do my job. Which is to sit and get my meds. Hardest part is always my veins and I’m ready for it every time. The nurses say I’m a great patient as I’m often the easy patient even with all this wrong with me. I’m not rainbows and unicorns but I try to smile through it all and just doing like I said. The best I can.
(Photos of me over the years in no order at all 😂 and last two are recent at least.
Top photo is my husband and I at a wedding I was in a wheelchair at time but also had a cane. Today he holds my hand and I waddle when I walk. But I walk! And the dog is my auto immune warrior dog archer who also has auto immune too. He is my bff! Loyal always like me.)
Oh and I do have white hair! Bring it on life I can take it! 😂 My tiger stripes.
No comments:
Post a Comment