Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group GRRR Family

Aussie girl, thanks so much for this thread, along with the rest of you! I have been diagnosed with AS for 7 years now and have been through this "process" with my family. I tried to gently educate them but they're not really interested. I certainly push myself to the max when I'm feeling well, which is how I've always been anyway, so when I feel unwell my family and friends often don't understand. They think my uveitis is pink eye.

It took a few years for me just to be able and speak up if I need something. I always worried about appearing weak..now I realize that taking care of yourself is not weakness, but strength. My family has gotten better over time and I find myself spending more time with them than anyone after the last few years. My Dad can't really acknowledge my disease openly so I just don't discuss with him. I am past the anger at them and just have compassion for them and myself because I know we all have our issues because we are human.

It has not been as easy with my friendships and I've found this disease quite isolating. I am single, have been in and out of work, moved back to Atlanta to be near family, and feel that I have really lost friendships because I don't have the energy to keep up or they haven't had any interest in keeping up with me. I have a hard time planning outings because I never know how I'm going to be feeling on a given day. I have even been hesitant to write on these forums I am such an introvert. So here I am, thanks to you all. I am regrouping, starting a new job that I think will fit my needs, and hoping to find some new friends.

Aussie girl, I lived in Sydney for two years (before my AS was diagnosed)..I miss it everyday. Love Oz!

that's been one of the biggest adjustments for me. i used to be such a planner, now i have to just wing it a lot more often. its good to have a few friends with whom i can make "tentative" plans but then reschedule when we need to. but then it has to be get togethers that don't cost. like, can't be a concert at a set date where we have tickets or anything involved like that.

now, the way i "plan" is to have a list of things i'd like to do tacked to the side of the fridge. and on a good day, look at my wish list. there are things that have been on that list for years that would require being able to sit in a car longer than i currently can, but its good to have a list with short term easy goals and longer term harder goals.

and now, whenever i plan my annual conference (for work), i have to get flight insurance so i can cancel my flight if i get sick. work won't pay for it, it comes out of my pocket. but work also won't pay for flights booked but not taken even if its due to illness or any other kind of personal emergency. so, i get the travel insurance. and hotels are awesome. one can usually cancel up to 72 hours in advance with only a small (~$25) service fee. small hotels and B&Bs can't do that. but the big chain hotels can and do.

it would be great to be able to plan better. or for people that always "just winged it", it may not be as much of an adjustment. but for someone who was always a planner and 100% dependable (i never would have dreamed of backing out on someone unless i was very sick), its hard to have to always make "tentative plans".

but we all learn to adjust. then its not so hard.

This thread has brought up a whole lot of issues for me: I think some of my family members with autoimmune problems have done others of us a disservice by not acknowledging them themselves - I include mum in this, as until very recently I really didn't have much idea at all of what her problems really were, and now I find when we are talking much more that she was going through all the same kind of stuff as me many years ago. had I known then, I certainly would have considered seeing doctors much earlier, which might have helped get a formal diagnosis, instead of just sucking it up.

The fluctuations of level of disability and problems is also a big issue. I cope pretty well at work, so few people in our community really realise how much pain and disability I have, even though they see me walking with crutches. I often have to cancel out of social activity or going to community events because work just wipes me out so much, but I don't think most folk recognise that is the reason.

Also, with not having a formal diagnosis its so much harder to explain to folk what is going on. I like the idea of talking about the unpredictability of it all - that sometimes it knocks me right out, and other times I can just get on with stuff. Also having a way of describing it other than using any kind of arthritis terminology (for example calling it a disease that attacks the spine causing major inflammation, pain, and ultimately fusing, rather than just spinal arthritis). Also talking about treatments being on a par (in seriousness) with things like cancer (having to take cancer drugs like MTX to keep the immune system under control), or having to take far more than routine painkillers to keep functioning.

The comments about planning vs just winging it - that really hits home too in that I used to be able to just grab my backpack and take off travelling using public transport and staying in hostels. Now its a military exercise to make sure I will be able to take appropriate breaks, accessible bathrooms, help with luggage, etc.

There always will be folk who dont understand or don't want to understand, my sister being a classic, so I suppose the only way to deal with it is to just not let what they say affect me. I got told once by a therapist "you always have a choice, even in extremely difficult situations and even if the only choice is whether you react or choose not to react". That is so true. Choosing not to react can sometimes be the most powerful choice out there.

Sorry I must have been typing my last post when you were and I didn't see yours. I love how you put it. I do believe we do ourselves a disservice by pushing hard when we can. I too wish I could wake up and the imaginary disease be gone.

Had a very good app with the pain clinic today. Has given me some extra tools to help think differently and cope better with others.
Sorry to hear about your flare. They suck big time. Fortunately I haven't had a major flare for some time now (touch wood).
Hope you are feeling better.

Hi and welcome. I am glad you have decided to post. Every one here is so lovely and supportive even if you are just ranting.

I lived in the Blue Mountains just outside of Sydney for a little while years ago but I couldn't tollerate the weather and moved back to QLD. I love it here.

I hear you regarding friends however I have been lucky in that I have met some great people through the surf club where my kids patrol.

If you ever come back down under be sure to let me know. I would love to meet others from here in person.
Take care and hope to see you around posting.

My yoga teacher and I had a discussion about choosing not to react just this morning. She often says during our practice "your body will react but your mind does not have to."
So I am working on just taking a deep breath before I react and try to make the right choice.

I totally understand your frustration about traveling..I used to do the same, camping, hostels, third world countries..it's all become too daunting. I did make it to Australia for a visit last year, only hard because of the long flight but worth every second. I was reading somewhere the other day about a girl who takes her Enbrel on camping trips in a cooler. Its takes planning. No more sleeping on crappy floors or mattresses for me though!

Yes, my goal is to move back to Australia in the next few years so we'll see! I am concerned about my health coverage and getting a visa with health problems. But something should work out if its meant to be. It just makes me smile to hear about the surf patrol!!

Steve,
I think you nailed it on the head. I wish I knew how to do quotes on here but you said:

"What they are saying is, I pronounce you are faking it so that I won't have to make any emotional investment at all".

OOOOOhhh, I have watched that come to fruition so many times. Those who walk their talk and those that don't. This is my mom. If she really believed it, then she would have to fly up here and help take care of me sometimes instead of letting my M.I.L. help me out all of the times that I can't do for myself.

Some can't stand for any attention to be taken from them.

I'm sure your aunt has some jealousy issues if this is what you discern from her. Maybe she is jealous of the wonderful family that you have and all that you have accomplished regardless of the diseases affecting everyone. If you sit down and confront these people, they will usually back down and tell you what is eating at them. You have to be the tough one and nail it down or just let them go but if it keeps affecting you, Trish, you just sit her down, one on one and approach her with love and kindness even though she might deserve it right now.

I have been surprised many times by what people tell me that they have been keeping in and it is usually something so hurtful that when someone notices them acting up they are ready to spill their beans and tell you what is really going on. I hope this helps as it sounds like you are really hurt by her.

These threads pop up often, you are not a lone in dealing with family/friends in this manner.

Fortunately for me, my father blazed the path for me and understanding in my family. He fused entirely in back/neck, fortunately upright... but from all close to him knew he had a chronic disease. Friends I had at time AS started showing signs was my difficult point... they all expected I could still do physically what I always had done.

Cannot let it get you down, there will always be family and friends that do not understand what it is like to deal with AS.

Take care,

Tim

these points of yours especially hit home for me.

1. i remember my mom having "arthritis" from the time she was in her 30s. the doctors never dx'ed it past that. had her believing it was OA (until now that i'm dx'ed, now she understands that its spondy, and now things make a lot more sense for her as well). but since nsaids kind of worked for her, she just sucked it up and took the nsaids til her stomach hurt too much, then stopped til her arthritis hurt too bad, then back and forth. finally she was put on celebrex, but even that gave her an ulcer; cox2 inhibitors inflame my stomach too.

its only now that i'm dx'ed, and last summer talking to my aunt about what's going on with me. and she shakes her head knowingly in agreement and tells me more about the "family arthritis" then mom ever has. also found out from my aunt about how cirrhosis of the liver runs in the family.

mom just doesn't like to talk about heath issues. anything "unpleasant" just shouldn't be talked about. we need to only think happy thoughts. but to me, its more about sharing information, so that we can do something about it. knowledge is power. its taken a long time to get the knowledge. likewise it took many years to learn that my aunt died from a bleeding ulcer, my great grandfather died from stomach cancer, and almost all my relatives on my mom's side have had an ulcer at some point in their lives. i think my gastritis causing so much pain is a blessing in that it has so far prevented me from getting an ulcer as i can treat it before it ever gets to that point.

2. have to agree with your second point. it has been a lot easier in explaining and having people understand and believe me once i had a dx and understood myself what was going on.

3. love the term "military exercise"! when i travel, half my suitcase is for the usual stuff everyone else brings (clothes, toiletries, etc) and the other half is medically related (my feather pillow for my neck, ice packs, heating pad, drugs and supplements, flector patches, blue icy gel, etc etc) even driving anywhere around town to do errands and i have to pack a cooler full of ice packs for sitting in the car. going to the acupuncturist, dentist, imaging, etc or if my husband drives me, and i have to also take my "bag o pillows" (i just now have a bag in the closet with all the various pillows i need and my neck thing to lay on, so i can just grab it and go. and then i gotta take food so my gastritis doesn't flare. every time i leave the house, it looks like i'm going on a weekend getaway! LOL! "military exercise" thanks for that phrase!