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Attitude and AS #280688
07/02/18 01:08 PM
07/02/18 01:08 PM
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achala Offline OP
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achala  Offline OP
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hello,
Watching AS community videos and reading many of the posts on this forum, I have observed (apart from the fact that biologics are the current preferred treatment option), many members speak about the right attitude to have while living with AS, to the point of even thanking AS as it gave the the opportunity to get to know thyself, etc.
Being diagnosed quite recently it is quite hard to see this debilitating condition in such light.
Could you please expand on the ideas behind the right attitude if possible? What have you learnt during your experience with AS? How to regulate the balance of your mental self? Rather to remain oblivious towards what happens to you or aware, or a bit of both? When to know is the fear ruling us and when we shall be vigilant?I really would like to understand what really is the right attitude towards this chronic disease - if such exists, and how can we benefit from this?
Thank you,

Last edited by achala; 07/02/18 01:42 PM.

diagnosed with AS April 2018, starting with cervical pain/stiffness, spreading across Achilles/sacroiliac, thoracic pains.
diagnosed with iridociclitis April 2018 (3 flares so far)
suspected diagnosis of Eosinophilic Gastritis
No signs of inflammations on MRI`s
Currently on Arcoxia 90mg per day (somehow managing the pain and inflammation to some extent as not Iritis at this point)
Hemp Oil - good for managing neck pain
Re: Attitude and AS [Re: achala] #280689
07/02/18 02:28 PM
07/02/18 02:28 PM
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Winston Offline
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It's completely normal -- psychologically healthy, even -- to grieve for some period of time after your diagnosis. You are not going to have the life you thought you were going to have, and that's a very good reason to be sad. But you can't stay in that place. At some point, you've got to shift your focus to maximizing the life you do have. There's some pretty good evidence -- and lots of anecdotal evidence from doctors -- that people who are optimistic and have positive attitudes fare better than others when suffering from chronic and even terminal diseases. There's even some evidence that optimistic, positive people experience less pain than others.

For me, perspective is key. There are millions (probably billions, actually) of people in the world with worse lots in life than mine. I remind myself of that fact daily. It's also crucial for me to stick with a daily routine that incorporates lots of sleep and exercise. I get grumpy and depressed when I deviate from my routine. Even when traveling, which I still do as often as I can, I try to stick with my normal sleep and exercise routine as much as possible. I don't find it helpful to my mental state to "remain oblivious" as to what is going on with my body. I'm the sort of person who feels empowered by information, as opposed to overwhelmed by it. For example, it doesn't make me anxious to know that my disease increases my risk profile for all sorts of other diseases (heart disease, etc.). That knowledge actually motivates me to exercise and watch my diet so that I don't develop any other risk factors for those other diseases. I focus on the things I can control. I still get bluesy about the whole situation from time to time, usually when I'm tired or stressed for other reasons. I don't panic when that happens. Instead I pamper myself a little, have a little treat, buy myself a little present, etc., and just wait until it passes. It always does. If it didn't pass after a while, I would not hesitate to see a therapist for help.

Re: Attitude and AS [Re: achala] #280691
07/02/18 05:13 PM
07/02/18 05:13 PM
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Whidbey Island WA
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WhiteCell Offline
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I don't like disease, in fact I oppose it with sophisticated pharmacological treatments, activities and a fierce opposition to detractors to those who are fighting for their lives and their goals. I stand as a person who is affected by AS. I pursue the best doctors, the best treatments and like many here research and follow advances in the field.

My attitude since my diagnosis was gratitude my other ally. Millions don't have the options that we have potentially, and these people suffer tremendously which brings me to the final asset: compassion.

I am unswerving in my allegiance to the pharmaceutical companies, physicians, nurses and other scientists who work with intensity to solve the medical problems of our times. So....I fight. I fight disease, I fight detractors and I fight my doubts with gratitude and compassion.

It's not an easy world but It's easier to stay than to turn around and run.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Attitude and AS [Re: achala] #280694
07/02/18 07:39 PM
07/02/18 07:39 PM
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miaoli Offline
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It hasn't quite been a year since I was diagnosed, but I'm finally starting to get into a decent mindset about it. For me it was a matter of getting over the self-pity part of it which I think we are all entitled to. And when I say over it I don't mean it's completely gone I still feel that way sometimes, as recently as last weekend, but I think the difference now versus when I first was diagnosed is 1.) I know what's going on[mostly, I have another unrelated health thing that I'm navigating] and 2.) even if I don't -KNOW- how to handle a bad day I can now look at what I've learned in the passed year and tell myself that I will learn what I need to and figure out the best approach when it's a bad day.

I would not go as far as saying I "thank AS". I don't want this disease or wish it on anyone, but a benefit I've noticed is I've learned how to enjoy alone time and actually look forward to it. When this all started I isolated myself socially and had some nights where I felt quite lonely. Friends would be doing things and I just wouldn't feel up to it. This still happens of course ,but now I'm more able to accept it and find ways to enjoy myself on my own when it's a bad day and I can't go out. I actually have found that even when I do feel well enough to go do things with friends sometimes I prefer being alone.

Another "benefit" is that aside from my diagnosis I'm probably healthier than I've been in years. I've cleaned up my diet and exercise now, I've lost weight and actually am starting to like the way my body looks, and I guess AS kind of got me there. During a good spell I went traveling and luckily during the brief holiday I had no flares and was very active. After I returned I told myself "huh maybe I can finally start going to the gym again" (since diagnosis I had used AS as my excuse to not go). After going to the gym I decided to eat healthier because the two go hand in hand. Again I won't say I thank AS but I did learn somethings about myself and am pushing myself more than I used to.

I hope this helps (it seems to me you are trying to create a positive/encouraging thread so I thought I'd share!) Good luck and take care !


Dec 2016- Persistent feeling of being "off-balance", no true vertigo but feelings of dizziness.
April 2017- Pain started at first in calves, then back (location random), then knees and ankles. All diagnostic testing tried at this point normal.
Sept 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Nov 2017- Cervical X-ray narrowing b/t vertebrae
Meds: Indomethacin 50mg BID
Re: Attitude and AS [Re: achala] #280696
07/02/18 08:33 PM
07/02/18 08:33 PM
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SouthernMoss Offline
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I'm too much of a control freak to remain oblivious. Educating myself is my way of taking control. But you have to find a balance and make sure your education doesn't turn into obsession.

Physical activity improves my attitude. And this is coming from a confirmed couch potato who hates exercise. I discovered that water aerobics is the perfect activity for me, to the point that I actually look forward to it. And again it's the control factor, the idea that by finding a physical activity that I can do, I have more control over my condition.

I don't know that I could ever go as far as thanking AS, although I do understand where those folks are coming from. For me, it's an adversary, and my attitude is to keep chipping away at it and celebrating the victories, even the small ones.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Attitude and AS [Re: achala] #280705
07/05/18 05:56 PM
07/05/18 05:56 PM
Joined: Nov 2007
Posts: 459
St George, UT
Britefutr Offline
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Achala, that is one of the most difficult questions to answer. I do believe though that a big part of having a great attitude, is the support network that you have around you. The reasons you find to keep fighting, keep your head up, and put a smile on your face. If you have those things and you keep those things in the forefront of your mind it is much easier to face what’s ahead with optimism.

I’ve had AS for nearly 40 years. In the early years it was the thought that it always gets better eventually, it always goes into remission eventually. That’s what got me through the worst flareups. It always got better eventually, until it didn’t. It’s more advanced now, and while I’m not completely fused I have many of the more rare complications. The disease really kicked into high gear about 10 years ago. Since that time little pieces of my life have steadily been taken away. I can no longer work, I can no longer do my hobbies, travel is extremely difficult. I definitely went through a phase where I didn’t know who I was anymore I still thought of myself as my profession, an underwriter, but also a gardener, golfer, crafter, hiker, on and on. It’s been very difficult to wrap my head around who I am and what I contribute to the world now. Most days I stay positive at least as far as other people can observe. But I actually sought grief counseling. I realized I was grieving for the life I had lost. And I wasn’t getting past it. As each little piece of my life was getting chipped away I would grieve again and again. Of course no one saw this except my husband. When I’m in that bad place I don’t see people, I don’t talk to people. So most people still say I cope so well!

I really hate it when people say things like “you’re an inspiration,” “you’re so brave,” etc. I’m not brave, I didn’t have any choice therefore I have to deal with this on a day-to-day basis. A brave person sees what’s ahead, has the chance to walk away and doesn’t. That’s not what happened to me. I’m not an inspiration either. I throw plenty of pity parties for myself. And there are weeks at a time when I cannot pull myself up by my bootstraps and put on a happy face and join the rest of the world. I’m overwhelmed by pain, fatigue, worries about whatever new health problem has been befallen me that month, and worry about what will come in the future.

My attitude tends to sway. Sometimes having the commitment and determination to fight this illness anyway that I can and find joy in each day in someway: but sometimes wanting to just surrender and live my life on my living room couch watching Netflix.

I do want to mention one more thing. Current research shows that the emotion that is most effective in increasing your sense of well-being and therefore helping your attitude...is GRATITUDE. And not just grateful that you’re not as ill as other people. Break it down as much as you can. I am thankful for the people that work in the field and grow the plants that are used to make these medicines I’m grateful for the people that work on the dock picking up those heavy boxes and stacking them on trucks so they can be sent to a pharmaceutical. I’m grateful for the janitor that works at the pharmaceutical company and keeps things spotless clean and sterile so the research can progress. I’m thankful to the people that labor and struggle to put themselves through medical school and specialities, and passing your boards. I’m grateful that they dedicated their life to working for my benefit. Especially given that medicine is no longer a guarantee to financial success. I’m thankful for all the volunteers and the people that work at the spondylitis association, and that they come in every day and remain dedicated to helping those of us that may have lost hope. Even if we lose hope they do not. I am thankful for that. I am thankful that ridesharing has become a real thing. Many times I can’t drive and there is no taxi service where I live. In the old days I would miss doctors appointments because I was too sick to drive. There are all kinds of things to be thankful for thankful for the little things as well as the big each and every person that contributes to trying to make your life more livable. I am most thankful to my Family that has stuck by me through this road. At times when I was completely incapacitated my husband did every single thing to run this household and take care of me. We have no family in the area that could pitch in and help. He never complained a single day he keeps a smile on his face and makes me laugh. Nothing helps me block out pain more than a good belly laugh., So I’ll end this post that is already way too long by just saying good luck to you and no matter how you feel that day remember you are entitled to feel that way.


Sebeth
---------------
AS onset at age 13, finally diagnosed in 1989, age 22!
Currently awaiting Cosentyx.
IBS, Polycythemia Vera, Anticardiolipid Syndrome,
Myositis, Adrenal Insuffiency, Asthma, etc...
Re: Attitude and AS [Re: achala] #280715
07/06/18 05:34 PM
07/06/18 05:34 PM
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achala Offline OP
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achala  Offline OP
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Compassion, Gratitude, Laugh, Social Interaction/activity, love, openness, yes thank you I am beginning to understand

Last edited by achala; 07/06/18 05:35 PM.

diagnosed with AS April 2018, starting with cervical pain/stiffness, spreading across Achilles/sacroiliac, thoracic pains.
diagnosed with iridociclitis April 2018 (3 flares so far)
suspected diagnosis of Eosinophilic Gastritis
No signs of inflammations on MRI`s
Currently on Arcoxia 90mg per day (somehow managing the pain and inflammation to some extent as not Iritis at this point)
Hemp Oil - good for managing neck pain
Re: Attitude and AS [Re: achala] #280718
07/08/18 01:03 AM
07/08/18 01:03 AM
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Mary Beth Offline
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As has been mentioned, a grieving period is normal, probably necessary, after a chronic illness diagnosis. But then comes perspective. As you get older nearly everyone you know will be facing something. Would I rather trade places with my friends with inflammatory bowel disease, multiple joint replacements, back surgeries, debilitating migraines, lost spouses, cancer? The list goes on.

To me it really sort of forced me to grow up and stop feeling sorry for myself about other things and realize that life is NOT fair, but no one ever said it would be. Instead of "Why me?" I say "Well, why NOT me?" Surely I don't think other people deserve their fates but I am somehow to be blessed with a life without obstacle?

It is what it is. Every day is a gift, We are not guaranteed a future at all, let alone a particular future. I was a horrible procrastinator but this disease taught me that life is about TODAY and that each and every day I should do something productive and something that makes me feel good, and that I should try my best to make time for those important to me because tomorrow is uncertain.

I didn't get to this understanding in a day or a week or a year. I still have my bad days and I still have moments of self-pity and selfishness like everyone else. But, really, so many people in the world would give anything for the chance to live the life I live.

Make the most of it.

Last edited by Mary Beth; 07/08/18 01:04 AM.

46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Attitude and AS [Re: achala] #280742
07/11/18 10:26 PM
07/11/18 10:26 PM
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apfurste Offline
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I think people who have this disease tend to have a high pain threshold as well. I have fluid drained from every dang joint on my lower body and even a shot of steroids in my freaking eye once. So, when I get soreness, I push thru the pain and often I find it goes away? Does that sound strange? For example, I woke up Sunday and my big toe joint was very painful and I took some advil and just pushed thru and not its not sore at all. Such a weird disease.

Re: Attitude and AS [Re: achala] #280746
07/12/18 06:31 AM
07/12/18 06:31 AM
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achala Offline OP
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Yes apfurst, but it’s not only about that. It’s also the question of uncertainty over when the pain is signaling something potentially to be intervening about. Because as it is a progressive disease the pain can appear and go away but it can also stay. For example: for the last 5 days I have been of Arcoxia due to some findings in the terminal ileum- eosinophils.however the pain in my neck, Achilles, lower back became so unbearable I had to take the pill. Now I am fixed for today but what’s next? Obviously have to go to the rheumy... and what then?


diagnosed with AS April 2018, starting with cervical pain/stiffness, spreading across Achilles/sacroiliac, thoracic pains.
diagnosed with iridociclitis April 2018 (3 flares so far)
suspected diagnosis of Eosinophilic Gastritis
No signs of inflammations on MRI`s
Currently on Arcoxia 90mg per day (somehow managing the pain and inflammation to some extent as not Iritis at this point)
Hemp Oil - good for managing neck pain
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