Spondylitis Association of America
Posted By: sharpthings hard time.dealing - 09/01/12 07:45 PM
Its been 2 months since my official dx. At first I was so happy to have an answer that I didnt give much thought to the full spectrum of this disease. I cant physically play with my daughter as much as I would like to. I have had to give up the wonderful motorcycle trips my husband and I used to take. I don't drive, but just being on the back of the bike for more than 20 mind becomes excruciating and I am despising how Mich this is affecting my quality of life. I LOVE my job, I'm a hairdresser and I used to work upwards of 9 hrs a day. In the past 3 months I have had to reduce to less than 6 hrs a day. My clients are understanding but I am discouraged that I am mot as efficient as I used to be. I am slower at work, slower at house cleaning, slower at everything. I hats that my family is so affected by this and I don't know how to help them and help me. Any advice or encouragements would ne sooooo. Appreciated. Thank you all for being such a supportive group.
Posted By: Anonymous Re: hard time.dealing - 09/01/12 08:04 PM
jamie, i would just caution you to never give up hope. unless you are fused solidly, you WILL do all those things again. i know, because i have done so many things again i never thought i would. i know tennis is out, but i still garden, awkwardly LOL, and other stuff i love. mostly long walks, short hikes.

i have been physically stuck (unable to move for days) with this dx a couple of times, and if my body had stayed that way, i would have likely been just as bummed as you.

stretch yourself, as in, do exercises, appropriate ones, like listed here at the saa, at the resources page. ( hit the home button above).

practice turning away negative thoughts. and, yes, it is easy for me to say, except i had my first cancer at 7 years old, and every other med problem since. so, ya, it is easy for me to say. i am 60 now and enjoy every day. and sounds like you have a very full and happy life and family. just live it. you will do fine.

and, write back anytime. promise, no more "up" speeches. just whine if you want, LOL. it IS a bear of a dx.

prayers and peace, sequoia
Posted By: KimD592 Re: hard time.dealing - 09/02/12 02:54 AM
I think what you are going through is pretty common. I, too, remember feeling relieved that I finally had an answer. After all, if there was something physically wrong with me, that meant there was treatment, right? As the months have gone by (it's been nearly 10 months since my diagnosis), that sense of relief has turned into fear. Things have gotten really bad over the past 3 or 4 months, and I have had to give up a nursing job that I truly enjoyed.

That being said, I am comforted in knowing that I am still early on in this process, which means there is still hope that things will improve. I still feel hopeful that we will find the right medication or that maybe I'll go into spontaneous remission.

All I can really say is, try not to focus on the negatives. Yes, you have had to reduce your schedule, but you are still able to work. For myself, I am not working anymore and have applied for disability, but I still have my family and friends to get me through. And for you, it's okay that you have to work a little more slowly. Sometimes that is what you need to do in order to conserve some of your energy and lessen the discomfort and stress on your body. As for the housework, well, that stuff will still be there when you are having a "good" day. When I am having a bad day, I slow down a bit and I may not be as productive at home. However, I try to make up for it on my "good" days. Don't be so hard on yourself. Your family is there to support you and help you through the tough times. Don't be afraid to ask for help. My husband has had to pick up a lot of slack since I've really been sick, but that's just what we do for eachother when one of us is down.

In any case, try to remain positive and keep your chin up. Find ways to keep your mind occupied so that you are not focusing so much on this disease. I have begun going to church, in hopes of finding a way to make sense of all of this.
Posted By: sharpthings Re: hard time.dealing - 09/02/12 03:22 AM
Thank u both so much. Maybe I am .. ok I AM being impatient. I want the treatment to work NOW! As we all know it wont. smile I am more down right now because of a bad flare and some weight gain due to the inactivity during the flare. I have had some very good days a couple of months ago, a few weeks even. I just got my hopes up that this was it, I was better. I'm learning as this goes on that every day is different. I'm such a routine person that the unpredictability of every day has really thrown me off. When I feel better I do light yoga and stretching. It hurts, but I always feel better afterwards. Thank you for the support, as u very well know we can use all we can get. And yes, sequoia,I have a WONDERFUL loving family that does everything in their power to help me through this. That is irreplaceable.
Posted By: Anonymous Re: hard time.dealing - 09/02/12 01:55 PM
jamie, some days the weight gain is the worst. it is ridiculous to worry about that, but i sometimes feel if i "looked" more like my old self, i would feel better.

per my acupuncturist, i went off sugar this past week. should have lost 2-3 lbs, as i always lose fast. not an ounce!!! ya, i can feel with you. for me it is the inflammation. totally takes over my body and doesn't let go.

you have every right to feel down. there just doesn't seem much we can do to change the course of this dx. occasionally we are lucky enough to go into remission on some level, or at least the flares die back.

i wrote because i just wanted you not to lose sight of the good around you too. because then we tend to get wound up in a vicious circle of disease, and bummer, and reverse, and we kind of forget who is there for us.

take care, and do write often. s.
Posted By: rumble Re: hard time.dealing - 09/02/12 08:24 PM
What has frustrated me the most about dealing with this disease is that the treatments take SO LONG to work. Even MTX, the 'fastest one' for me, it took 6 weeks to see if was going to work. SSZ was 3-6 months failed trial. Biologics may start working by one month, but it still takes 6 months to see if it's going to 'really work well.' Argh! When you are hurting and having to give up activities you love, it's a life time of waiting.

Not to scare you, but I've seen my rheumy since I was referred in Jan 2009. It's been a long time of trying things, but now I think it's working. It's the 3rd biologic, but I think it's working the best. Don't give up. Everything about rheumatologic disease takes forever. Except steroids...LOL.
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