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Re: Attitude and AS [Re: achala] #280749
07/12/18 02:30 PM
07/12/18 02:30 PM
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SouthernMoss Online
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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 - 58 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 Online
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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
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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Iowa City, IA USA
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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
08/05/18 03:02 PM
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seymour Online
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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
08/14/18 04:13 AM
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WhiteCell Online
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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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achala Online OP
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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
Signs of inflammations/erosions on MRI`s for axial and 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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Toledo, OH
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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
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
08/31/18 07:43 PM
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seymour Online
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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.

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