Tuesday, July 20, 2010

On Vacay

I just felt like blogging because I am so down. It is so therapeutic to blog. Right now I should be pretty happy, but I am down and don't know if I will ever be up again.

I don't see my family nearly enough. We are in Tennessee and it is the first time I have seen my aunts, uncles, cousins, and even my mom in a long time. I have felt pretty well physically (except for during the long car ride from Texas-that caused mucho pain!)

So why in the world should I be so unhappy?

It's my marriage. It's very much on the rocks. It has made this trip really bad for me. I have cried so much and I have not been able to enjoy my relatives the way I should.

I'm trapped in my marriage, though, for many reasons.
1. My kids---I don't want them to have to change schools, lifestyle, and step-brothers. They are very happy here.
2. I have no job. He made me quit a job I loved at a school I loved. It made sense at the time and I honestly enjoy being a stay at home mom. But---I have no income from being at home.
3. This damn arthritis. I seriously don't know how I could work full time and be a single mom when I feel the way I have for the past 12 months. I hurt so badly when I have a busy day and I can't even imagine the fatigue I would experience. Ugh.

I try to "grin and bear it" for my kids. I love my husband at times and he makes me laugh....however, he is not real supportive of my condition---in fact, I really think he resents me because of it.

I will figure things out eventually, I suppose. It's truly scary feeling suicidal. I want to enjoy life again. I want to be happy.

On another note: my sister, who has had psoriasis for a long time, took one look at my skin lesions and easily identified them as being psoriasis. I guess I need to go to the dermatologist. If I am diagnosed with psoriasis, I will officially be diagnosed with PSA. Not that it really matters, but a name will make me feel validated in a way. "Undifferentiated Spondylarthropy" seems so......nonspecific. When anyone asks me what I have, I hate telling them. All I know is it is real---my rheumatologist knows it is from my bone and joint scans---and it would be nice to finally have a specific diagnosis.

Thanks for letting me vent, my blogging world friends.
Hugs,
Beth


- Posted using BlogPress from my iPhone

4 comments:

  1. Can you make an income using your photography? Maybe a little something will make you feel a bit better having given up your own job. It's normal to ride the roller coaster of auto-immune disease. It's no walk in the park that's for sure. You have to find a way to get your husband connected... are the step kids sympathetic toward you? Maybe they will be source he needs to hear it from. I know comparisons can be made quite abruptly by those who do not understand so maybe he needs to stop reliving what was and accept what is.??? I don't know, but know this, many of us out here have each other in prayer and thought! Hugs. Tazzy

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  2. Hi Beth,

    I saw that you started following my blog, so I came over to check out yours. I'm sorry to hear you're going through so much all at once and still trying to battle this brutal disease. I know firsthand how much pain you must be and I'm glad you found me. I'm 24 now, but was diagnosed with undifferentiated Spondyloarthropathy at 15 when they found I had the HLA B27 gene. I had symptoms my whole life, though, and it took 15 years to get an answer. I understand a lot of what you're going through emotionally: how a diagnosis can be unbelievably validating, the ups and downs of illness, the severe depression that accompanies constant pain, the mourning over a life you once had. I just want you to know my blog is here and so am I. There are silver linings...I promise. They're not always easy to see (as you can tell from my latest posts), but the good news is that once you have an official diagnosis, you can look forward to officially starting to get better. The drugs out there are powerful and they're on the brink of breakthroughs as we speak. Keep the faith and just put one foot in front of the other. You are already stronger than most people out there...

    All my best,
    Maya

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  3. Karen aka nevragnJuly 28, 2010 at 9:22 AM

    Beth, the stress you have in your marriage is not helping your condition.

    I'm a single mom, have been for 15 years or so. You could do it, it is hard, but you're strong enough and once they find the right meds and a proper diagnosis you WILL start to feel better. Not every day, but one day at a time. You should sit down with your kids, privately without the steps around, and explain the situation. They are old enough to understand and learn to help with your condition. If nothing else, ask your doc if you could bring them to an appt with you so they can learn from him what to expect. The guy you live with should go too, and the doc should hit him over the head.

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  4. I think, feel believe, take care of yourself first. Try very hard to manage your condition. Lay some leaflets or books by his bedside or better yet, IN THE BATHROOM ON THE TANK. Men read tampon boxes in the bathroom from fear of boredom.. or falling in. Then maybe little by little get the kids on board with it all. Just a suggestion. Hugs to you.

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