Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Re: Upsetting comments....
suzie3run #232857 05/07/12 04:27 PM
Joined: May 2008
Posts: 13,279
J
Registered Visitor
Offline
Registered Visitor
J
Joined: May 2008
Posts: 13,279
Originally Posted By: suzie3run
My dad, my husband, my mother-in-law, have all said to me, "You just need to push through the pain." .... applies. They CAN'T know what this is like.... It doesn't mean they don't love us, they just don't know.


Even if we can't know what others are going through - we can believe and respect them. My partner suffers from moderately severe depression. I've never been depressed a day in my life, and he doesn't have a systemic chronic physically painful condition, but we support one another's "invisible" disease because we love each other, not because we understand what the other is going through.

Nobody has ever told me to just push through or that I complain too much etc. Maybe I am lucky, but I think everybody is entitled to that type of treatment from "loved ones!"


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
Re: Upsetting comments....
suzie3run #232880 05/07/12 07:58 PM
Joined: Feb 2012
Posts: 23
S
SRS Offline
Registered Visitor
Offline
Registered Visitor
S
Joined: Feb 2012
Posts: 23
Hi, Suzie3run and others in the forum. I’m sorry to hear of the relationship struggles that many have described, and hope the waters will get calmer in the days and weeks ahead.

I wanted to respond to Suzie’s question regarding what others are trying. Even though the context was in light of medication, I thought it might be beneficial to share a variety of approaches that are helping to take the edge off the pain for me and have helped to keep me as active as possible under the circumstances. Maybe this information can help someone else—I really hope so. I see all of us in this together as a big tapestry, and you never know when you’re going to help someone or have someone help you. I have benefited a lot from other members' suggestions over the past few months.

• Using Enbrel 50 mg once a week by self-injection.

• Taking Demerol 25 or 50 mg once a day.

• Using a topical anti-inflammatory lotion on almost all of my joints twice a day. There are various types of lotions that work for people; however, a 10% ibuprofen solution in a lotion base has been the best for me.

--You can mix this yourself through your doctor's guidance or have a compounding pharmacy create the mixture.
--My pharmacist calculated that to get a 10% ibuprofen solution, it’s 120 tablets for an 8-ounce bottle of lotion.
--Using a professional mortar and pestle is very helpful for crushing the tablets. We bought ours at a restaurant store. We use a sturdy Tupperware-type container for the mixture.
--Because only 6% gets absorbed in the bloodstream, we calculated that using 8 ounces a week of the 10% solution equates to only one, 200 mg tablet a day that gets absorbed in the blood. I think most folks would use a lot less than I do because I am applying it to my neck, shoulders, arms, back, hips, knees, calves, ankles, and feet twice a day.
--The only precautions of which I am aware are to wash your hands thoroughly (including under the fingernails) after applying the lotion before touching pets, not to let pets lick any areas on which you have applied the lotion, and to keep the supplies away from pets and children so they don’t have access to the pills/lotion.
--The pain relief and increased joint flexibility usually begin within 10 minutes of applying the lotion, and the most potent effects last a couple of hours before starting to decrease.

• Exercise is one of the biggest keys towards managing spondylitis. Even though it is painful, in this context, pushing through the pain can yield very helpful results.

--I highly recommend ordering the SAA Back in Action DVD that walks you through stretching exercises you can do lying down or sitting, as well as visiting the Athletes Against AS forum on this site for tips and suggestions about what others are doing to remain as active as possible.
--In fact, I just finished participating in an exercise-motivation project with fellow SAA members. A slideshow should be available soon with photos and descriptions from fellow members for what works for them, as well as a list of resources to explore. As always, please follow your doctor's advice for the best types of activities for you.
--Even if you are currently bedridden, I encourage you to find ways to exercise in bed towards having more control over your life and increasing your mobility. The more you can do to manage the condition instead of having it manage you, the better you will feel emotionally and physically.

• Using prescription orthotics for my feet, as well as Brooks sneakers due to the high arch support they provide.

• Varying standing and sitting throughout the day; using a specialized chair that relieves pressure on the back; using thick, anit-fatigue mats to reduce pressure on the feet, legs, and lower back.

• Having foot massages—especially right after workouts.

• Using a hot tub with specialized jets for about an hour a day.

--Here are some further suggestions that I hope will be helpful:

• Make sure you have at least one, excellent doctor who works as a partner with you.
• Keep seeking answers for what works the best for you.
• Remember, you are your own greatest advocate!
• Request an SAA mentor. He or she can be a tremendous support on many levels of your journey.
• Do the best you can with what you have in the midst of the rough pain and lifestyle adjustments.
• Pray often--lean on God for comfort, strength, and hope.
• Help others and allow them to help you; be creative; remember, there are always possibilities.
• Wear braces as applicable to allow you to do activities that you could not do otherwise. For example, I wear elbow braces to lift weights.
• Try to remain focused on items outside of the pain, such as using imaging or getting absorbed in a favorite activity, instead of concentrating on the pain.
• Exercise with friends when possible, sharing how you are feeling with them, and celebrating successes.
• Based on some of the other posts, it can be very difficult to find people who truly understand and support you, but please keep persevering--they are out there! I have met many folks through SAA in the past couple of months, and it has helped me to feel less alone.

Last edited by SRS; 05/07/12 09:22 PM.
Re: Upsetting comments....
Shine #234728 06/09/12 05:43 PM
Joined: May 2012
Posts: 9
S
Registered Visitor
Offline
Registered Visitor
S
Joined: May 2012
Posts: 9
It has been a journey for us all. My husband has been going to the SAA site and learning so much, which increases his understanding of this disease, which in turn gives me a helpful partner and friend. Thanks for all the info.

Re: Upsetting comments....
SRS #234785 06/11/12 02:12 AM
Joined: Jun 2009
Posts: 38
S
Registered Visitor
Offline
Registered Visitor
S
Joined: Jun 2009
Posts: 38
What a great post Suzie, thanks for some great ideas!


S. Elizabeth

Dx AS in 04' HLA-B27 positive, Chronic Uveitis, Raynauds.
Humira wkly, Mtx inject wkly, Soma, Hydrocodone. Tried Remicade, allergic reactions so back to Humira

























Humira wkly, MX wkly, Folic Acid, Navanac daily, Vicoprophen PRN, Flexeril, recently failed Remicade, back on Humira wkly.
Re: Upsetting comments....
Shine #235234 06/19/12 08:15 PM
Joined: Jun 2012
Posts: 6
Registered Visitor
Offline
Registered Visitor
Joined: Jun 2012
Posts: 6
I'm so sorry for the ignorant comments. Having a child does not "reset your body clock" lol it infact throws a wrench into the darn thing. lol This is just ignorance on their part i hope. No one in my family understands my husband's pain. But AS isn't an advertised disease...there is no "TV drug" specifically for AS....so most people go about their lives knowing nothing of it.


Wife of 28 year old man recently diagnosed with AS. Looking for support for myself and him. We have 3 young children. And I want to be able to understand what's happening to his body and why...and what our options are as far as treatment. It has been a long road getting this diagnosis but atleast we know what is causing the pain now.
Page 2 of 2 1 2

Moderated by  ElinAslanyan 

Link Copied to Clipboard
Powered by UBB.threads™ PHP Forum Software 7.7.4