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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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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; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with iridociclitis Nov 2017 (4 flares so far) - bilteral, DES
Eosinophilic Gastritis
No signs of inflammations on MRI`s for axial. Visible inflammation/erosion of Achilles/calcaneus + bursitis
Naproxen (occasionally), Sulfasalazine 3000 mg per day
Supplements: vit A&D, reishi mushrooms, fish oil/probiotic/ Mediterranean NSD
plenty of swimming
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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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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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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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 replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Attitude and AS [Re: achala] #280705
07/05/18 05:56 PM
07/05/18 05:56 PM
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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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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; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with iridociclitis Nov 2017 (4 flares so far) - bilteral, DES
Eosinophilic Gastritis
No signs of inflammations on MRI`s for axial. Visible inflammation/erosion of Achilles/calcaneus + bursitis
Naproxen (occasionally), Sulfasalazine 3000 mg per day
Supplements: vit A&D, reishi mushrooms, fish oil/probiotic/ Mediterranean NSD
plenty of swimming
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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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
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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; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with iridociclitis Nov 2017 (4 flares so far) - bilteral, DES
Eosinophilic Gastritis
No signs of inflammations on MRI`s for axial. Visible inflammation/erosion of Achilles/calcaneus + bursitis
Naproxen (occasionally), Sulfasalazine 3000 mg per day
Supplements: vit A&D, reishi mushrooms, fish oil/probiotic/ Mediterranean NSD
plenty of swimming
Re: Attitude and AS [Re: achala] #280749
07/12/18 02:30 PM
07/12/18 02:30 PM
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SouthernMoss Offline
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Achala, you have to find the right balance between vigilance and obsession. That can be tough sometimes. But as time passes you learn what your "normal" is, when it's ok to ignore symptoms and when you need to speak to your doctor.

I was doing PT for my wrist last year and was asking the therapist about wrist braces. I started telling her about my elbow and ulnar nerve problems, how I know what positions or actions to avoid, how I sleep with a microbead pillow under the elbow at night, etc. She made the comment that I was "very in tune with my body." I think that is common for most everyone who has had this disease for a while.

You are still new to the disease, so you are still finding your way. You will get to where we are over time.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Attitude and AS [Re: achala] #280932
08/04/18 06:46 PM
08/04/18 06:46 PM
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seymour Offline
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I kinda have the same problem as achala. When I have a bad few days or some random new pain I’m always unsure whether it’s just "normal" AS daily grind or something I should investigate.

I’m unsure what level of pain is acceptable for AS.

My rheumy told me that optimal treatment for people in their 30’s should render AS almost inactive and not cause significant pain. For older people there’s a level of normal pain caused from joint damage from either AS or wear and tear.

I’m so used to basically not having any pain that I’ve become a wuss. :p

Re: Attitude and AS [Re: achala] #280938
08/05/18 06:51 AM
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What's sucks about having AS is that in Australia there is no support so I'm doing this alone, the nurses at the doctors haven't even used an auto injector before and my doctor has never seen one, that's pretty sad but I will plod along doing the best I can...all the best.

Re: Attitude and AS [Re: achala] #280939
08/05/18 01:16 PM
08/05/18 01:16 PM
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AussieCowboy: There are vast areas in the United States just like what you have described there in Australia. I can tell by by your screen name that you will be OK. There are many people here with helpful information so don't go away --- you are not alone. I understand about putting needles in your own body and hate losing even a drop of blood.

Seymour: Age does have a lot to do with how we cope. This may be confusing and overly simplistic, but the longer you live the more you learn how to handle things
--- it's called life. I personally feel there is more good in life than bad. Even when things are bad, be patient and wait it out, chances are it will be good again. Kind of like the weather. When there is a storm, hunker down, do what you can to protect yourself, hope, pray, whatever that no lasting harm happens. Even when harm does happen --- that too will likely get better. So pain is like the weather --- very scary at times but a normal part of living.



Re: Attitude and AS [Re: achala] #280940
08/05/18 03:02 PM
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Man I wish I could be so chill about it.

Perhaps it’s because I’m only 32 and I see all those years ahead as just time for the disease to push forward and get worse.

I know basically no one in my age group with health problems of any kind so it feels very lonely.

Re: Attitude and AS [Re: seymour] #281033
08/14/18 04:13 AM
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Originally Posted by seymour
Man I wish I could be so chill about it.

Perhaps it’s because I’m only 32 and I see all those years ahead as just time for the disease to push forward and get worse.

I know basically no one in my age group with health problems of any kind so it feels very lonely.


First the major advances in treatments came after years of testing, now millions of suffering is relieved by them. For decades doctors had no solutions and now they do. Many of us were young and suffering day in and out, but we persevered. It's what we did.....and we did it alone with kind doctors. Who knows what is coming? So I hope that you won't feel so alone, walking in a path that millions of us all have walked before you and may have to walk again. I was 19 when I had my 1st signs of disease in a family that would not allow me to see doctors. We all have things to carry.

Success is the best revenge against disease. Be emboldened to work hard at it.

Cheers!

Cell


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] #281275
08/31/18 06:20 AM
08/31/18 06:20 AM
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Just a little update on how AS impacts my mental state up to date:
In recent days (and I hope it’s not that I am just too high on prednisone ) I started to see myself more detached from my body. A little bit like afraid that this body can really hurt me. That resulted into changing my perception to more humble. Perhaps I am beginning to get to know myself a little bit better, cleverly observing my deficiencies.

Last edited by achala; 08/31/18 06:21 AM.

diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with iridociclitis Nov 2017 (4 flares so far) - bilteral, DES
Eosinophilic Gastritis
No signs of inflammations on MRI`s for axial. Visible inflammation/erosion of Achilles/calcaneus + bursitis
Naproxen (occasionally), Sulfasalazine 3000 mg per day
Supplements: vit A&D, reishi mushrooms, fish oil/probiotic/ Mediterranean NSD
plenty of swimming
Re: Attitude and AS [Re: miaoli] #281281
08/31/18 03:21 PM
08/31/18 03:21 PM
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Originally Posted by miaoli


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.


You've hit on something I've called the "silver lining" of AS if there can be such a thing. Before my PsA and AS diagnosis I lived HARD. I worked out a ton but I also ate anything I wanted and drank like crazy. Like more days of the week than not. My attitude was I'd do what I wanted and work it off. But that kind of lifestyle takes a toll. Eventually.

AS has forced me to clean up my act. No, I can't run and lift heavy weights like I used to be able to, but I've cut my drinking back to only social occasions (I have no alcohol in the house anymore), I work out smartly and I've changed my diet radically. AS may even be ADDING years to my life in a perverse way because I take so much better care of myself now than I used to.

And all I have to do it look at my mom for inspiration. She has rheumatoid arthritis and severe back issues. But she's still super active and turns 80 next year. AS sucks but it does't have to prevent you from living an long and active life.

Last edited by MichaelSean; 08/31/18 03:22 PM.
Re: Attitude and AS [Re: achala] #281282
08/31/18 06:51 PM
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That is always inspirational. When I was first diagnosed, I spent more time eating great, stretching, exercising and less time drinking and doing nothing. Now I have nothing but stress on other issues, and can't afford many of those luxuries. Goes from eating a balanced perfect diet to help with conditions, to eating just to not be hungry.

I think there is a heavy mental toll to this disease and a lot of that stress comes from everything from cash flow to family, and just trying to deal with doctors. I think if you are fortunate to have things in order, you can look towards a good life as managing the disease becomes easy.

Re: Attitude and AS [Re: achala] #281284
08/31/18 07:43 PM
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That's right sdot.

It also depends on your personality. I'm an anxious person. I have a job that's perfect for AS, I can't be fired because I work for the city and our jobs are super-secure, I have a good rgeumatologist, an understanding spouse, supportive friends and family members...

... and yet on the more painful days I'm super depressed and I can't seem to be able to deal with the fact that the future is uncertain. I mean I have the best conditions imaginable when you have AS but I still often feel super stressed out and scared that I'll always be in great pain and disabled.

When I have good days I feel like AS is not that bad. But on bad days I lose hop quick. My therapist is trying to help me come to terms with the uncertainty and symptoms.

Re: Attitude and AS [Re: achala] #281287
08/31/18 10:16 PM
08/31/18 10:16 PM
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The world is pretty messed up so I'm not dying to live forever, especially if I don't enjoy it. Last few days I have been ok, but very sore and tired today and not enjoying it. Outside of spending time with my wife, I don't enjoy much and don't really look forward to much at this point. I promised my wife the world, so I need to stick to that and try to ride it out as long as possible.

Sure everything about this thing is depressing, and there are a lot of other things in conjunction with life ife that is depressing, so it is what it is. Probably better to be dead than letting this disease put you in a chair.

In a world where people kill themselves because they only got an entry level BMW for their birthday, or no one believes 'sea turtle' is a gender, I am kinda glad to have made it this far without drowning myself.

Always remember other people have it worse, and so many people can't survive with having a great life. If you have to go out, go out with a bang.


Do you think I may be able to get a gig as a motivational speaker?

Re: Attitude and AS [Re: achala] #281288
08/31/18 11:00 PM
08/31/18 11:00 PM
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oh no. spoke too soon. one of my internal organs hurt and i am getting all hot and sweaty and disoriented. i might be dying guys. if you don't see me tomorrow it's not because we fell out of love, it's probably because god decided to finish the job.

Re: Attitude and AS [Re: achala] #281290
08/31/18 11:20 PM
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Whoa, i'm ok. probably just gas. had me worried there for a moment.

Re: Attitude and AS [Re: sdot] #281291
09/01/18 01:09 PM
09/01/18 01:09 PM
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Originally Posted by sdot
Whoa, i'm ok. probably just gas. had me worried there for a moment.


Sorry to hear that you're struggling. I've been dealing with dizziness an disorientation lately, too. It's horrible. When it hits it honestly feels as if I'm having a heart attack. I'm seeing a dizziness specialist on Wednesday to try and start to get to the bottom of it. And fix it if it's at all possible.

Re: Attitude and AS [Re: sdot] #281292
09/01/18 09:18 PM
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Originally Posted by sdot
The world is pretty messed up so I'm not dying to live forever, especially if I don't enjoy it. Last few days I have been ok, but very sore and tired today and not enjoying it. Outside of spending time with my wife, I don't enjoy much and don't really look forward to much at this point. I promised my wife the world, so I need to stick to that and try to ride it out as long as possible.

Sure everything about this thing is depressing, and there are a lot of other things in conjunction with life ife that is depressing, so it is what it is. Probably better to be dead than letting this disease put you in a chair.

In a world where people kill themselves because they only got an entry level BMW for their birthday, or no one believes 'sea turtle' is a gender, I am kinda glad to have made it this far without drowning myself.

Always remember other people have it worse, and so many people can't survive with having a great life. If you have to go out, go out with a bang.


Do you think I may be able to get a gig as a motivational speaker?





The thing for me is that there IS much I look forward to. I still have so many books to read, movies to watch, places to visit, time to spend with my girlfriend and family. I don't want to allow AS to take my life away, neither metaphorically nor literally.

For 6 years I felt like AS was behind me almost. Now I gotta grieve again.

Re: Attitude and AS [Re: achala] #281293
09/01/18 09:31 PM
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But yeah, being sore and tired might actually be worse than pain. The worst days are when I'm just vaguely sore all over, tired and feel like I almost have the flu. When I have localized pain but good energy I can manage.

Re: Attitude and AS [Re: achala] #281295
09/02/18 03:20 PM
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I hear you. There is a lot of look forward to I guess. I have done a lot before this disease, so it's going to be hard to top without me getting a few million bucks. Even without AS, watching movies, reading books and etc. I have lost a lot of interest in. I miss some of the more spectacular things. Wanted to get my pilot's license, eat at nice restaurants every day, take my family on vacations, travel, buy some stuff that I want.. you know..

For me it's not the pain, and it's not the crappy future outlook. It's the limitations that I am having now.

Pre-AS me was a doer. Never a dull moment, always out and about doing things, meeting people. Now I sit here sore, creaking and cracking, tired,issues popping up here and there, and that is very limiting.

My family wanted to go to the drive in a few weeks back, and I was so sore sitting there that I had to struggle through the first movie and had to leave before the second. They want to go again, but I don't know if that will ever happen. Personally I don't care for the drive in anyways, but it impacts my family so that is tough. If it was just me I could care less, I wouldn't even be here, but with responsibility as my purpose, I gotta try to make it work.

Re: Attitude and AS [Re: achala] #281296
09/02/18 03:21 PM
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Just need enough money, and I can make everything work.

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