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waxing and waning #280033
03/09/18 03:27 AM
03/09/18 03:27 AM
Joined: Nov 2017
Posts: 25
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MartinMMM Offline OP
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MartinMMM  Offline OP
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Joined: Nov 2017
Posts: 25
The reasons I have come to this forum is to alleviate the isolation this disease causes. Everyone gets sore muscles and joints, everyone has bad days. Everyone gets the blues some time. This disease sounds like a country song on the surface. There is a difference in the way we feel than other people do and I know because I remember what it was like to be regular muscle sore. I remember regular-tired, and garden variety blues. I remember when getting up in the morning meant some surprises that were not what new thing hurt or didn't feel quite right.

I've come to this forum to talk a little bit about how this disease waxes and wanes in an inconsistent way. One morning a sudden onset of trochanteric bursitis, another some peroneal tendonitis, all to accompany the white noise of back ache, malaise and the suspicion that you are crazy because after all, you don't look sick.
And of course, after a while your understanding spouse pays less attention to your litany of complaints because of frequency and repetition. And of course, they don't know what it's really like. And you can't go around bitching to all your friends for a variety of reasons foremost of which is you don't want to be the sad sack. Especially since in most of your other life, pre-disease, you might have been dynamic, fun loving and accomplished - and maybe that person is still there waiting for the right treatment to work.

So, you come here to a community of strangers who share one overwhelming important attribute. They are experiencing the same things.

So, with this post I'm not asking for advice - I'm doing all the work one can do with drugs, exercise and lifestyle choices. What I'd like to hear are voices of those who share the feelings of isolation and the anguish that causes. It seems that at a certain point one becomes a prisoner in one’s own body, and an exile on a desert island. Far from the community we once knew. Are you all my Wilson?

Re: waxing and waning [Re: MartinMMM] #280036
03/09/18 01:22 PM
03/09/18 01:22 PM
Joined: Jul 2006
Posts: 6,576
New York
Banana Offline
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Banana  Offline
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Posts: 6,576
New York
So well written, thank you for writing what I often feel. Right now the darn weather and kidney stones are wrecking havoc with my life. Feeling bad for my spouse too. Now he has to hear about that along with a foot of snow.


Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: waxing and waning [Re: MartinMMM] #280045
03/11/18 07:43 PM
03/11/18 07:43 PM
Joined: Mar 2016
Posts: 22
Kris44 Offline
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Kris44  Offline
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Posts: 22
I started Cimzia and the loading doses gave me hope. I actually woke up and walked around without incredible stiffness and pain. Then I went to maintenance dose. Then I had to stop my methotrexate because it sent me to the ER with stomach ulcerations. My PCP said no NSAIDs right now with my stomach problems.
And now ... flaring more often again. So disappointing. I feel like I aged 30 years last month. I felt better and got hopeful about doing more ... volunteering more at my kids' school and actually talking with others and feeling like I was out in the world. Then I had to stop and hobble around the house, cancelling everything. I fell down the stairs and landed on my tailbone area. Got a lovely huge butterfly shaped bruise and had to call my husband home. I will be 46 at the end of the month. 11 years ago I was running almost every day, working 12-hour shifts, going out and traveling. Now I feel like I'm 80.

People ask, "so how you doing?" I just answer, "Meh." I'm tired of saying oh doing ok, just fine, or keeping positive! I will text or send a message to one of my sisters some times just saying, ugh, I hurt. I don't expect a response with an answer or advice, like you say, just someone to commiserate with me for a moment.

What gets frustrating is when I do get to feeling ok I want to work on some things, even just like cleaning up an area of my house. My husband will say to take it slow and rest, not understanding that if I don't stay at it and hurry, as soon as I stop my joints and muscles feel like they lock up and I can't finish. So, if I push through, I can actually get something done; knowing that the pain and stiffness may be worse, but at least I completed something. Then I'm down for like 2 days. So, he gets frustrated with me for hurting myself and over-doing, but it's so frustrating for me to never be able to finish anything. Blah.

Thanks for opening the door for just venting.


Female 45, ANA positive, HLA-B27 neg, MRI + sacro/iliac disease, DDD, psoriatic arthritis, coagulation defects, diskectomy
Symptoms since 15 y.o.
DX: 2 years ago AS
Past Meds: Sulfasalazine, Humira, Enbrel, Naproxyn, Cymbalta, Methotrexate, Mobic, Ibuprofen
Current Meds: Cimzia and continuing Prozac, Vit D, Folic Acid, Cyclobenzaprine
Re: waxing and waning [Re: MartinMMM] #280058
03/14/18 02:28 PM
03/14/18 02:28 PM
Joined: May 2010
Posts: 1,419
Whidbey Island WA
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WhiteCell Offline
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Joined: May 2010
Posts: 1,419
Whidbey Island WA

I REFUSE TO BE A VICTIM TO THIS AWFUL ILLNESS.

After years of grappling with the debilitating pain, the injections into my eyes the terror and the fear when I did not even know what it was, the awkward moments in social situations, I just f'Kg stopped. I said it's one way down and one way up, and I begged, borrowed and almost stole my way into a career which I could do. I stood up, walked forward, No one knew, they asked and I didn't tell them. I kept my head down and I pushed forward and through. Sure, I was luckier than many. But before Remicade long before sympathy persuaded me to give up, the isolation became a friend, an ally and my path.as I was determined to own my life.

Sure it's not easy, but now married after many years, plane flights for surgeries alone in cities, treatments in awkward places with near blind doctors, my wife has opened doors to people and wonders I knew and desperately wanted to be a part of...in the process of getting there I created a life for myself. I still don't complain.

Live the dream you have imagined my friends. There is no time for self abnegation pity or feeling morose. Sorry, It's terrible...not not not not fair. It is awful bad.

Due respect man. Rage against the disease, grow and cherish the moments you have.....

Grasp the challenge and succeed.


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: waxing and waning [Re: MartinMMM] #280064
03/15/18 07:27 PM
03/15/18 07:27 PM
Joined: Apr 2016
Posts: 47
Boston, MA
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Miguelito Offline
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Miguelito  Offline
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Joined: Apr 2016
Posts: 47
Boston, MA
Wilson! Wilson!!!


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.

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