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#226378 - 01/30/12 08:37 PM The love of my life has AS
LovesHerSoMuch Offline
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Registered: 01/30/12
Posts: 2
I have just recently met and fallen deeply in love with the most amazing woman. We met because we both play music and she joined by band as the vocalist. She is talented, kind and thoughtful. She is intelligent, charming and deep. She is everything a man could ever hope for and she loves me back. She is also suffering mightily with AS at the young age of 24. I know the road ahead of us is laced with pitfalls and trials, but I have accepted that in order to receive the blessings of her presence, I must also be prepared to be a knight in shining armor.

The hardest thing for me is knowing that she is suffering, and not being able to affect it. I have always been the type of person that fixes things. When my friends are troubled I counsel them. When they are hurt I comfort them. I find solutions for their problems and help them defeat those problems. In this particular situation, I know there isn't a lot I can do to ease her pain. I just know I love her so much it blows my mind and I would do ANYTHING for her. Sadly the one thing I can't seem to do is reach insider her aching back and take away the pain. I know there must be others here who face this same situation and I thought maybe just finding a few of you to share with might help.

I can't imagine life without her now that I have experienced it with her and I just want to know everything I can do for her.

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#226392 - 01/30/12 10:36 PM Re: The love of my life has AS [Re: LovesHerSoMuch]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Hi there, welcome! The love you have for your lady just pours out in every word. I don't know if it is any comfort, but your desire to "fix" is actually very common for men .... you guys just always want to help us women fix up our problems! Very sweet smile

While I'm the one with spondylitis, my partner went through a severe bout of back pain this past summer and I got to be right where you are now - wanting more than anything to help him and being unable to. He also suffers from chronic depression that I am unable to impact. I know he would do anything to fix my body and its pain if he could, too.

Love is just that way. We hate to know our loved one suffers at all! Just let her be herself, don't let the pain define her, and when she needs to talk/vent, just listen. If she wants or needs help or advice, she will ask. If she's like me, she doesn't want to be defined by this; it's just something she has to live with. You can't be her knight in shining armor - nobody can sweep her onto a white horse and rescue her. But you can be steady and true, patient and kind, and she will be lucky to have you.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#226394 - 01/30/12 11:17 PM Re: The love of my life has AS [Re: JenInCincy]
LovesHerSoMuch Offline
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Registered: 01/30/12
Posts: 2
Thank you for your words of support. When we were starting to fall for each other, I spent a whole day researching AS so I could truly understand her feelings, fears and such. I knew part of what was holding her back from falling for me was her fears about AS and it's possible impact on my feelings. I let her know that I had been researching AS and I knew her fears, and made sure to let her know that no matter how bad the disease impacted her it couldn't change the way I felt for her. She told me that no-one in her life, friend or lover had taken the time to learn about the disease and it was a BIG turning point in her ability to let go and fall in love. TBH I feel blessed to be the person she let her guard down with.

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#226441 - 01/31/12 11:57 AM Re: The love of my life has AS [Re: LovesHerSoMuch]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Sounds like you two are building the foundation for a very solid relationship smile

This forum is kind of slow - but you can probably engage in some good discussion in the Young Adults/20-Something forum further up the list. There are quite a few folks here in their 20s - 2 very self-possessed young women in particular may be able to help you relate to your girl in the way an oldster like me can't wink - look for their posts. User names are iviary and emmiemaass.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#226458 - 01/31/12 02:29 PM Re: The love of my life has AS [Re: JenInCincy]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1263
Love conquers.
_________________________
Ank Spon since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU and ER; R.N. San Diego ~Grasp The Challenge and Succeed~

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#226465 - 01/31/12 03:27 PM Re: The love of my life has AS [Re: WhiteCell]
nisey Offline
Registered Visitor

Registered: 10/30/08
Posts: 1425
Loc: PA
What a wonderful love story! She is very lucky to have someone who is willing to take such an active interest in her problem. So many people are not so loving.

I know it is hard for my husband to deal with all the changes I have already gone through and the ones to come. I was healthy and active when we married. He has told me often that he meant it when he said "in sickness and in health". I feel blessed. Some are not so lucky.

Be prepared for anything. This disease does some crazy things to us! If you are patient and kind, that will go a long way in helping your love.

Bless you for your sweetness to your sweetheart,
Nisey
_________________________
It is what it is!

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#226581 - 02/02/12 12:57 AM Re: The love of my life has AS [Re: nisey]
iviary Offline
Registered Visitor

Registered: 11/30/10
Posts: 2008
Loc: North Texas
I'm one of the 20-somethings that Jen praised above (aw shucks, lady). It sounds like you and my husband have a lot in common. I was really quite healthy when we met, but health problems quickly cropped up and have progressed faster and faster with each year. We've been together going on five years (and married for going on 3) now, and he's been with me every step of the way. Neither of us are ever able to support the other in the way we each most want to. I want to relieve him of his 80-100 hour stressful work weeks. He wants to relieve me of my pain and discomfort. Trust me; that desire and the expression of it counts for a lot.

We're both sometimes guilty of being frustrated, but we are quick to clarify that we're frustrated with the situation, not with our spouse. It's frustrating to him sometimes when I spend hours at a time in the restroom, but we both know I cannot help it. He does what he can to ease my pain, lends an ear to my worries about my health, and picks up the slack when I'm in too bad of shape to do my share of the housework. It's frustrating to me that quality time with my husband is so hard to come by, but we both understand it's the nature of his profession and we rely on that for the majority of our income. I make him meals as otherwise he wouldn't find time to eat, listen to his work-fueled rants, and happily do more than my share of the housework when he's buried and when I'm able. I just say all this to express that she'll have her turn to support you in some way someday too (even if you think you'd be happy for it to be one-sided). My husband has his health while I do not, but we both bring so much to the table.

It's lucky to find such a strong love so young. It sounds like you two are laying the foundation to last through the struggles that a health condition like this (and the other unforeseen rocks that life throws your way) can bring. You're a good man to be so supportive and understanding of your significant other. I was similarly lucky with the man I snagged. Y'all are a rare breed: Keepers. smile
_________________________
Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol

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#226625 - 02/02/12 04:55 PM Re: The love of my life has AS [Re: iviary]
outlier Offline
Registered Visitor

Registered: 08/22/10
Posts: 371
Loc: Brooklyn, NY
So happy.

There are somethings you can fix and somethings you can't, you might not be able to fix AS for her but you can be supportive with whatever she needs. In fact I encourage you not to get to involved in her treatment if she doesn't need it or is not ready cause that can cause resentment.

Good luck.
_________________________
Diagnosed: ankylosing spondylitis Feb '10, Crohn's Nov '09, GERD Aug '09, Scleritis May '08, Scoliosis '92
HLA-b27 negative
Surgery: Scoliosis Spinal fusion July '99
Current Meds: Humira, Asacol, Reglan, Dexilant, Tramadol, Maalox, and Xibrom (Bromfenac).
No more sulfasalazine and Iron

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#227476 - 02/15/12 11:05 AM Re: The love of my life has AS [Re: outlier]
jaxbaldon Offline
Registered Visitor

Registered: 02/15/12
Posts: 114
Loc: Phx, AZ
I'm a 32 year old woman recently diagnosed, but have suffered for years. It is wonderful to hear you say these things. Support like that is very hard to find, you're both very lucky. One of the things I find most difficult in my relationship is guilt. I constantly feel guilty that my husband has to pick up all of the slack when I'm at my worst, or that we have to break plans due to a flare up ( I suffer from extremely debilitating spasms) but the hardest thing for me is his desire to fix it. He sounds a lot like you. There is no "fixing" it and what I need/want changes on a daily basis. I don't want my disease to define us. The best thing he does for me is be understanding, patient. Help me when I need help, (like getting out of bed in the morning, or reaching for something low) rubbing my back, or just letting me vent, and sometimes it is just leaving me alone. A word of advice..ask her, she will probably tell you, but beware, it may change from moment to moment. Your love and support and create a rock she can lean on, and sometimes that's all the "fixing" needed.
_________________________
The mighty oak was once a little nut that stood it's ground

I'm a 34 year old happily married mother of two crazy boys. I have AS. I take HRT's daily,Celebrex 2x's daily, tramadol every 6 hours, flexoril at night, failed Enbrel, currently on Methotrexate and Remicade infusions.

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#227883 - 02/20/12 09:52 PM Re: The love of my life has AS [Re: jaxbaldon]
mel2nc Offline
Registered Visitor

Registered: 11/13/10
Posts: 573
Loc: NC
Aside from all the advice you already have gotten...I tend to be a practical girl so I would tell you to help out when you are around. By that, I mean, pick up and straighten up her place when you are there. Offer to grab groceries or go grocery shopping with her (which is very tiring, by the way). Spending time with her doing the daily stuff (if your relationship has progressed that far) and helping her in the little ways adds up later in the day. Congrats on your love/relationship!
_________________________



Melissa in NC--43 yo working mother of 2 elementary kids and wife to a great hubby!

Dx: AS in 2009, moderately severe uveitis,gastroparesis.

Humira 40mg (twice a month), Methotrexate 20mg, Flexeril, Ibuprofen, Prilosec, Vitamin D, Folic Acid, and anti-inflammatory eye drops.

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