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#228946 - 03/06/12 03:06 PM Re: The love of my life has AS [Re: mel2nc]  
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LadyShfr Offline
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Good Morning, I am new to SAA and these forums. My husband, Randy, was first diagnosed with Reiter's Syndrome in 1992, and was prescribed with Indomethacin. The medication helped to a degree, but Randy still had significant "flare ups". In 2006 the indomethacin had started to affect Randy's kidneys. The doctors immediately diagnosed him with A.S. and took Randy off that medication. Randy went to see a rheumatologist (Dr. Daniel Rosler). He asked the doctor if there are other medications that Randy could try, but the only medication that was offered was Embrel. We have children and when they're sick Randy gets sick. Randy also had esophagus cancer Embrel would not work for Randy because of his susceptiblity to illness and cancer. Dr. Rosler said that if Randy did take Embrel he would have to find a new doctor and that it was likely that Randy would end up in a wheelchair. I was so upset at what that doctor had said...Wow!! That statement scared Randy that he decided to stop going to doctors. Our primary care doctor has been prescribing a very low dose of meloxicam for the past six years. Randy's "flare-ups" have been more severe and frequent. I've also tried getting social security, but have been denied (FRUSTRATING).

Randy and I have been together for 25 years and to see him suffer is quite scary for both myself and our sons. I can see that "wheelchair comment" coming true. frown Randy hasn't worked since 2006. I am the sole (financial) provider and that's hard in today's economy. We have our boys help out with household chores.

I believe Randy is suffering from depression and that's also hard to deal with as a family. I understand that the loss of work, mobility, and constant pain is hard to deal with and a constant daily struggle. Randy also knows that our children could be diagnosed in the future. I believe all that contributes to his depression. Randy won't admit to himself or any of us that's he's depressed.

I am a new member and am looking for help and support. Any advise for myself or Randy is greatly appreciated.

Thanks,

Sue Shafer

#229000 - 03/06/12 09:37 PM Re: The love of my life has AS [Re: LadyShfr]  
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SRS Offline
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Hi, Sue. I'm very sorry to hear of all you and your husband have been going through, and appreciate your courage in reaching out to others for suggestions and support. That is a great step!

I have learned a lot from fellow members already, and hope you will receive some helpful suggestions that can improve the quality of life for Randy and you.

Below are some ideas that I hope can be of assistance. Please feel free to send a private message to me if you would like to talk by phone. I have free minutes across the nation, so I would be glad to call you.

1) Although it is really frustrating to try to find a good rheumatologist, I highly recommend seeking until you find one who will have a team approach and not give up until he or she finds answers towards a better life style for Randy. Starting with SAA's recommendations would be a good idea.

2) Joining the SAA PEERS mentor program could be very helpful for you and Randy. I recently joined and have found great tips and comfort from the mentor assigned to me. SAA's process is excellent for matching people, and you have wonderful autonomy with how to approach the mentoring.

3) After you find a good rheumatologist, I would try any topical pain relievers recommended for Randy's condition. After much research, and under my doctor's guidance, my husband and I have been creating a 10% ibuprofen solution to put on all of the affected joints. It has worked better for me than prescription topical gels.

Ibuprofen topical cream is available in England by prescription, but not here in the United States, so that is why we are making our own. Here, there is topical diclofenac gels available by prescription, but at least for me, the ibuprofen cream is more effective and a lot less expensive!

Again, I would make sure Randy is under an excellent doctor's care for how to proceed, and I hope you can find someone soon who meets that description. In my opinion, a doctor with expertise, compassion, and a partnership approach is a big key to managing spondylitis emotionally, physically, and mentally.

4) Regarding Enbrel, I am wondering if there might be ways to boost Randy's immune system so he is not as susceptible to picking up illnesses. I am on Enbrel, and it has reduced the pain by about half and has stopped joint damage. It definitely leaves you more open to picking up infections; however, there may be ways to be on Enbrel and not pick up as many germs. Regarding the esophageal cancer, in all of the research on Enbrel, I have not found any statistics for adults getting cancer--only teenagers. I'm not sure, but it might be worth exploring this in further detail.

5) If you haven't done so already, I would download and order as much information from this SAA site as you can that is applicable to Randy's condition. I think the more up-to-date knowledge you have, the better.

6) Some other things that have helped me are:

--Standing on thick, anti-fatigue mats to work, and vary standing and sitting.
--Using a special chair designed to alleviate back pain.
--Having an indoor hot tub with jets designed to target all joints through different stations. This has been a God-send for me. I use the hot tub for about an hour each day, and can't imagine coping without it.
--Exploring special tools for doing tasks, such as jar openers and other accessories to take pressure off certain joints.
--Using elbow braces for lifting weights.
--Finding exercises that are helpful. Almost everything I have read recommends to push through the pain of exercise to get helpful results. SAA brochures can help with what types of exercise to try.
--Incorporating stretching exercises is one of the biggest keys in helping to reduce pain and increase mobility.
--Using massage can be a big help. My husband rubs my feet a few times a week and it helps a lot in reducing foot pain.
--Praying for strength, comfort, and hope is really beneficial for me. Reading the Psalms in the Bible has also been helpful. I am not sure what beliefs you have, but for me, Dr. David Jeremiah has given many helpful suggestions on how to cope with a wide variety of emotions, such as depression, fear, anxiety, loneliness, etc., along with suggestions for how to get through them. I have found his "Slaying the Giants in Your Life" DVD series extremely helpful for the wide range of emotions that spondylitis prompts. It's not designed for spondylitis, but many of the emotions apply! As you described, it's very difficult for the person going through spondylitis and the spouse and family. If you wish, check out the DVD series on DavidJeremiah.org. I think the DVDs are more helpful than the book because you can listen to them with your husband and discuss the information. It's been a big help in our marriage to have an outlet for talking about the emotions spondylitis prompts in my husband and me. (I have undifferentiated spondylitis.)
--Finding a creative outlet that allows Randy to focus off the pain as much as possible. By getting absorbed in something creative, such as writing a story or doing a wood project, the mind has a break from noticing the pain as deeply. Over time, this can help to handle things better emotionally by giving the pain receptors a break.

As mentioned above, please let me know if you would like to talk. I am rooting for you to find the best answers for Randy, you, and your family to make life more enjoyable and easier to manage.

Warmest regards,
Susan

Last edited by SRS; 03/06/12 10:20 PM.
#229005 - 03/06/12 09:59 PM Re: The love of my life has AS [Re: SRS]  
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LadyShfr Offline
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Thanks for the advice. I'll check it out.

#229009 - 03/06/12 10:22 PM Re: The love of my life has AS [Re: LadyShfr]  
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SRS Offline
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You are very welcome. Sorry for the number of edits--I kept thinking of better ways to word things! LOL The updated version is now there! :-)

Rooting for you,
Susan

#234807 - 06/11/12 03:47 PM Re: The love of my life has AS [Re: LovesHerSoMuch]  
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I can relate to all of you. I love my husband more than I ever thought I could love anyone. Dealing with the pain he suffers from, the bad days, and the sometimes harsh words he says when he is losing the battle of dealing with the pain. It's so hard sometimes. I pray a lot. I pray for my husband's pain to get better, I pray for strength, and I pray that one day he will find a treatment that truly helps him. I feel for all of you who go through the same things that I do.
But above all, I pray for a cure for AS.


Wife to Tony, who has been suffering from AS for over 10 years.
#241104 - 09/25/12 09:06 PM Re: The love of my life has AS [Re: LovesHerSoMuch]  
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Lianne Offline
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You are a prince among men. Your willingness to research the disease and try to understand it is such an amazing thing. That alone is such a support to her. I understand your wanting to fix everything because that's what people who love others do. As many of the others have said while there is no "fixing" it the fact that you are willing to try will mean alot to her. Like Mel2nc said help her out with the little stuff. The trips to the grocery store is an amazing help. It is very tiring and pretty much takes hours to recover. The little things that you do for her with tidying up at her place or running insignificant errands will help her out alot. And bless the both of you. You are on your way to building a relationship that most people can only wish for.


Diagnosed 9/20/12 after 12 years of xrays MRI's and diff pain pills. Taking Humira and antiinflammatorys.
#249355 - 03/04/13 10:24 PM Re: The love of my life has AS [Re: LovesHerSoMuch]  
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I hope to get my husband on this forum someday. He needs a release as much as I do. I am the one with AS. When we met, and married, I was super healthy, active, and our relationship was built upon outdoor activities and sports. Not at all saying that is all we had, but that is how our relationship grew. Within one year of marriage, my symptoms came about. It has been the past year that has been the most difficult, and is really breaking my husband. The point of me telling you this? To tell you what some days REALLY can be like.

He feels financial burden on him, not knowing how long I will be able to work.

We have a toddler, and a lot is put on his shoulders for caring for her. I am physically unable to do many things.

We are blessed to have insurance through my work, but there is always the concern that I may not be able to work for long, and I am uninsurable.

Sweeping, mopping, and vacuuming are almost impossible for me, so that falls on him.

There are days and nights I cannot get out of bed or off the floor by myself, so he has to help me.

He is standing by my side through it all, and he will break down and cry on very rare occasions, and tell me he just wants to fix it.

AS is just as hard on the spouse as the one who has it.

That being said, my husband said he would not want to be with anybody else. He wishes I didn't have this, but truly is with me "in sickness and in health."

I don't want it to sound like it is all doom and gloom. There are some great days, and some good days. Each person is different, and their abilities will be different. But, I want you to be prepared that there will be times that you need to be the caregiver, if you choose a spouse with AS.

#249723 - 03/15/13 12:11 PM Re: The love of my life has AS [Re: LovesHerSoMuch]  
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Rachel01 Offline
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Welcome to the forum although I'm sorry that you have to be here and have someone you care so deeply about who is afflicted by this disease. You honestly remind me of my boyfriend of six years, although when we met I was still healthy but became sick shortly after. I thought for sure he would leave once we found out it is not curable. It's not that I think so little of him, it's that he's such a great person and deserves a "normal" life, in my opinion.

Your love for her is very strong and certainly touching. As Jen said, we don't want to be defined by our disease or pain. I know personally I frequently push myself to do not than I should, but Jeff is always understanding and helpful when I'm forced down.

My best advice would be to remind her that you're not going anywhere. In some of my weaker points, I tried to push Jeff away so he could have a "normal and happy" life. Of course since then he had made me quite aware that his happy and normal will always include me in it. While your relationship and level of physicality may change over the years as the disease progresses, your love will evolve along with it.


Rachel
ANA+, HLA-B27+, started Remicade June 2008, switched to Enbrel September 2010, switched to Humira April 2011, stopped biologics September 2011. Fusion already started, 25 years old.
#249834 - 03/18/13 03:14 PM Re: The love of my life has AS [Re: LovesHerSoMuch]  
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SRS Offline
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Thank you to ASisNOTme and Rachel for your heartfelt comments above.

In conjunction with what Rachel shared, I think we tend to see pain and limitations as bad in our society and no pain or challenges as good. Although none of us would choose to have this disease, it is amazing how many blessings can come about in the midst of it and how it can deepen your marriage by needing to do things as a team.

I think it is easy to attach our self-image to things we cannot do instead of all of the things we can offer to our spouse and those around us. Having a chronic illness can increase our emotional awareness, prayer lives, communication skills, and gratitude for the things we can still do. I would like to encourage you to continue the attitude that you already have with not defining yourself by AS.

Also, I would like to recommend that you continue to explore options to help increase activity and decrease the pain level. It is amazing how many possibilities there are for being able to return to activities with a bit of help from options, such as elbow braces, knee braces, topical anti-inflammatory pain relievers, switching particular angles or heights for certain activities--such as the angle of your arm when you perform a task or using a table at the right height for doing something instead of having to bend.

I would also encourage you to ask specific questions from others in these SAA forums for activities you miss and would like to do again to see if they have any suggestions, as well as having a doctor to whom you can say, "I want to do ABC; what options do I have?"

Also, please check out the following video that describes how SAA members have gotten around obstacles to be able to do more outdoor and indoor activities: http://www.spondylitis.org/press/news/552-benefits-of-exercise.aspx

Of course, there will probably always be many limitations for us with spondylitis, and the constant pain takes its toll; however, the more we can find workarounds to continue to enjoy the activities we want to do, the healthier we'll be on many levels.

I hope these comments are helpful and can add to the things you already have in place for overcoming or moving around roadblocks.

With warmest regards,
Susan

#249836 - 03/18/13 04:25 PM Re: The love of my life has AS [Re: LovesHerSoMuch]  
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There is no such thing as "normal." Everybody has struggles and problems and limitations. Some are visible, some are severe, but it is a part of being human. But just a small part of who anyone IS.

There is not enough love in this world ... if somebody you love wants to love you, let them! Don't presume to think you know what is good for someone else, i.e. finding someone "better" or "normal." Each of us must decide that for ourselves.


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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