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#205156 - 04/19/11 01:09 PM Pride: My Best Friend & Worst Enemy
iviary Offline
Registered Visitor

Registered: 11/29/10
Posts: 2007
Loc: North Texas
I don't know about you, but my pride is both what keeps me going on the rough days, and what keeps me going when I should rest instead. So many flares can be attributed to me doing more than I should because gosh darnit, I'm 22. I should be able to keep up with my workout class of (literally) little old ladies. I should be able to walk my dogs. I should be able to trim the bushes in my front yard. I should be able to sit at my desk for a 6 hour stretch.

It's also the biggest source of frustration, and ultimately tears. I just want to be a fairly mature for my age but otherwise normal 22-year-old. It's so hard on my pride to have to admit I'm not, in so, so many !#$%&=% unfair ways.
_________________________
Mary, 25, happily married photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Otezla, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Compound Neuropathic Pain Cream, Tramadol

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#205239 - 04/20/11 09:29 AM Re: Pride: My Best Friend & Worst Enemy [Re: iviary]
sunshine01 Offline
Registered Visitor

Registered: 11/01/10
Posts: 323
Loc: California
Hi Mary,

What you wrote resonates with me. For over the last 3 years now I have held on to my pride and my stubbornness to get me though my life. But I donít want to just "get though" life I want to enjoy my life. These last few months have been really hard for me physically and emotionally. My pride and stubbornness finally failed me. I finally just let it go. I gave up to some degree. I struggled to get out of bed not just physically but mentally. It takes so much energy to fight each day to live let alone be normal. I was done, just DONE! This week I have been really working on my mental state and doing whatever I can. I am clawing my way out of the quick sand pit and it is hard. I know eventually I will get out of it fully just to reach another part of awareness on this journey but it sucks!

I agree with you...for once I would like to wake up and be completely normal. I would like to feel like other 30 year olds. I donít want to be afraid to go to Mexico in a few weeks because I am afraid that I wonít be able to do anything fun. I donít want to hurt on vacation!

When I started college I started having full on AS symptoms but no one knew what they were. I was stressed with school, work and how to pay bills. Not to mention losing a very close grandfather and a mother getting cancer. The stress was just too much for my body and I was flaring all the time until I was 24. Then the AS seemed to go away for a few years. Then when I was 27 it came back with a vengeance much worse than when I was in college and itís still here. My 20's were a huge rollercoaster and I was never normal. Always wanted to be different but knew I wasnít.

Anyway not sure where I was going with this but I hope it helps to know you are not alone. It does suck feeling like you are 80 when you are in your 20's. I wish more people understood!
_________________________
Mel

AS-Humira and dicolfinac, Fibro-same as the migraine cocktail, migraines-diclofinac, Cymbalta and Promethazine.

"No one can make you feel inferior without your consent."-Eleanor Roosevelt

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#205410 - 04/21/11 10:01 PM Re: Pride: My Best Friend & Worst Enemy [Re: sunshine01]
emmiemaass Offline
Registered Visitor

Registered: 05/17/10
Posts: 539
Loc: New York
Mary,
I hear you and completely understand. I think your symptoms are quite a bit worse than mine, but I still get it. Luckily, I've been doing pretty well lately, which is fantastic. But it seems to make it much worse when I do have a bad day, or week. I almost get used to feeling somewhat "normal" again and then pain hits me and it's like I've never felt it before. On bad days, I'll go into a pretty bad depression. I never let anyone know, but it's just a really rude reality check, and I'm reminded of what it used to be like and may be like again in the future.

I still know my limits, but I'm glad to say that I'm doing well with the gym and being more active, and that in turn I think is helping me feel better. I know it's easier said than done, but it has made a big difference for me. I am aware, however, that I wouldn't be able to do it if I was still as bad as before.

I have moments of pride as well. For example, if I'm feeling good and my boyfriend and I decide to go for a hike...I make myself keep going even if my knees start to hurt. We don't really do any crazy hikes, just simple trails with a few hill climbs and minimal obstacles. I find it absolutely unacceptable that I'm 22 and can't finish a hike. After all, I have to make it out of there, so I really don't have a choice.

And when you're around people you don't know who don't know what you have, it's pretty tough. I take the baby I nanny for to a Little Gym class. Pretty tame, but it's not always easy, and at times embarrassing that I'm the youngest adult there and can't get up. Or run around the mat with her while moms twice my age are doing it, or crawl around on my knees.

I have my moments where I break down, mostly while alone, and just sob over the reality of living a much harder life than most people my age. I cry when I think of the things I might not be able to do, or at best do with some difficulty. It's frustrating and scary. But for the most part, I'm like you and I push through and do the best I can.

I guess my post has turned into a vent. Just know you're certainly not alone.
_________________________
Emmie-23 y.o. HLA-B27+ Lyme+: April '09
Dx: Spondyloarthritis May '10.
Waiting on Humira, Diclofenac 2x daily, Neurontin or Percocet PRN

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#205451 - 04/22/11 07:32 AM Re: Pride: My Best Friend & Worst Enemy [Re: emmiemaass]
Ken1 Offline
Registered Visitor

Registered: 01/13/11
Posts: 122
Loc: ny
Pride is one of my main problems, I'm a guy, I'm 20 years old, I've had a decent amount of medical problems before my AS diagnoses, and have had to deal with chronic pain before AS so I feel as though I should be able to handle this. But dealing with AS is like living with a tiger in your bedroom, its just never dormant for me, I can't escape it and don't want to admit it. Before my AS I worked a job on my feet for 18 hours a day, 6 days a week; and I loved it, I'm trying so hard to find someway that I can go back and do that again, but I just don't see how. Everyday I tell myself that one day I'll be able to do it, all I've got to do is stay positive and do everything that I can to help myself.

So what I really think the issue is with pride is staying positive, I feel as though that if I keep my head on strait, and keep my chin up than I don't have to have all of this animalistic pride. Because I feel the pride comes from two places, 1 being the lack of ability to do things that as 20 year olds we should do with out a thought, and 2 being the feeling like this disease encompasses your life and that your never going to get away from it. So if we stay positive and optimistic than we don't have to feel so much pride. Now Iím not saying the pride will go away, I donít think you can ever have no pride, Iím just saying that keeping a positive mindset, can allow you to not feel so much pride about not being able to do things that we should be able to do.

But then that can open up another can of worms which is how to stay positive, and that is something that Iím still figuring out.
_________________________
Im 20 years old, I go to culinary school. DX with AS in July 2010. Currently on Tramadol and Flexoril. Starting Humira, or at least trying to get my insurance to improve it first.

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#210866 - 06/18/11 09:52 AM Re: Pride: My Best Friend & Worst Enemy [Re: Ken1]
becca Offline
Registered Visitor

Registered: 02/26/11
Posts: 151
Loc: Ohio
Mary, you are deffently not alone!
What I would give to be normal for one day.
Almost three months ago I had both my hips replaced because my AS was undiagnosed until the damage was done, my hips fused completely together, I had no movement in them at all. Now since my hips have been replaced, not all, but a lot of flexibility has been restored to them. But I still can't stand up straight because of scoliosis in my spine, my spine is curved not straight. And my pelvis is tilted and twisted.
I would have never thought I would have to have my hips replaced at 20 years old.
Like all of you, I just want to be normal, be able to do things a normal 20-year-old should be able to do.
_________________________
i can't fall back i came too far, hold myself up and love my scars...

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#212651 - 07/15/11 01:15 PM Re: Pride: My Best Friend & Worst Enemy [Re: becca]
dgopal Offline
Registered Visitor

Registered: 05/24/10
Posts: 144
Loc: Greensboro, NC
Mary, I totally get what you are saying.My situation is some thing like Emmie describes. The Humira did wonders for me and I had forgotten I have AS. I planned a trip to Europe with ym husband and was in the best possible shape physically in the 6 month sleading upto the trip.I worked out every day and felt great. I flared at the worst possible time.....during my trip and I was so upset and just couldnt believe it was happening.I tried my best to keep up with all plans we made telling myslef I was fine and tht i can do it. But my body just could not take it frown

It is really scary having this upredictable disease at such a young age and freaks me out thinking how I am going to deal with all the pain and uncertaininty for rest of my life
_________________________
Female, 30, Diagnosed with AS in April 2010
symptoms controlled with enbrel

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#212739 - 07/17/11 09:18 PM Re: Pride: My Best Friend & Worst Enemy [Re: iviary]
jamielynn182 Offline
Registered Visitor

Registered: 06/30/11
Posts: 57
Loc: Texas
I am 29 years old and I will say that it is unfair to have AS or any other disease for that matter at such a young age. Ever since I was 23, I had problems. First, I almost went blind in my left eye due to uveitis and many tests were run and the doctors could not find anything. The predislone did help clear up my vision. I wear glasses for distance vision. Shortly after turning 25, I had a new set of problems: I lost at least twenty pounds (without even trying), my hair was falling out, I felt tired all the time, and my joints ached and were swollen. I felt like a 90-year-old instead of a 25-year-old. I went to several doctors over the next few years and had my second bout of uveitis in the fall of 2009 (the doctor caught it early). During those times, the doctors could not find out what exactly was wrong with me. Finally, last year I was diagnosed with AS and got started on the right treatments.

The hardest part of having AS at a young age is facing the fact that I will be dealing with it for the rest of my life (unless a cure is found). I also had to give up running, step areobics, and other high impact activities. I was devastated when I learned my days of dance and step areobics were over for good. It was a lot of fun to dance to the music while I burned calories. I was expecting my twenties to be the some of the best years of my life. I envisioned that I would be finished with college before 25, even married with a few children of my own before I turned 29. I was able to finish college at 29. The whole marriage and family thing will have to wait. (I plan to adopt). It was also hard to be left out of some of the activities that my classmates and friends were involved in. Most of my friends ever had and do not have to deal with health issues, so most of them did not have any idea of what it feels like to have AS and have to go to the doctor every so often.

I will turn 30 in January, and hope that my thirties will be much better than my twenties.

My pride is my positive attitude. I also remember and try to laugh every day. I have two brothers, and some of their antics are very funny. Most importantly, I try to do at least one fun activity every day. I also am thankful that AS is not a life threatening disease. I know that some people have it worse than me.

In college, I did meet a young woman who was recently diagnosed with RA, and she knew what it was like to be in pain and have to deal with doctors. She is one of the friends who is understanding about limitations

Diagnosed with AS in September 2010
On Remicade every 8 weeks
Methotrexate: 6 pills once a week
Folic acid and B-12 every day

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