Wednesday, July 15, 2009

How do I keep finding myself here again & again?

My legs & arms are covered in bruises. Every time I think I can ride out the pain & not do this to myself again, it happens AGAIN.


Bruising easily is part of Lupus. I've had that symptom for as long as I can remember & probably before. Nerve pain is also part of Lupus.

Put the two together & once I push on a spot that is hurting too much to ignore (acu-pressure style), I get bruises that look like spots. Right now they are ALL over my legs. And my arms. It's NEVER been this bad. It makes me sick to look at the bruises honestly :(

I'm pretty sure my current rheumatologist is an idiot. I don't think she's a bad person or anything, but taking me off pain medications & expecting me to be a contributing member or society is just not going to happen. "Take Tylenol Arthritis. Being on pain medications at your age is too risky."

How did my age become a factor in this??? Has anyone else been fed this bullshit???

I'm finding it's one or the other. Either I take pain medications & can get up & do the things that needed to be done days ago, or I don't take them & I make myself look like a bruised up leopard & can't do shit.

My hands wouldn't work well enough to type for a few days. That's why you haven't heard from me on here. They have been drawn up in pain & arthritic deep aching. The same aching pain I feel from head to toe. I swear sometimes it hurts so deep that it feels like my bones are rotting.

Someone tell me how to get past this. Tell me how to DEAL. How to FUNCTION. How to FREE myself of this pain...

And if you can't do that, tell me my doctor is an idiot. Help me realize I deserve to have my pain level managed using medications & that it's OKAY to do so. She sure has gotten me on every other medication she can get kickbacks from. What's so wrong about pain meds? I just don't understand why this has to be such a FIGHT & why I should have to feel GUILTY for wanting medications to help.

I'm just SO tired.


  1. I hear you. I had a hard time too. Right now I'm on Methetrexate & plaquinel. Lot's of folic acid & prednison when needed. Most of the time I fight through the pain, I know it's a shame. I used to think they enjoyed seeing me die from the inside out. In the begining they did give me pain meds & believe it or not they didn't work. I slept, but that was it. Every so often now I cry myself to sleep. But, what can I do, right?

  2. *HUGS*

    I'm so sorry & as you said "I hear you"! My pain levels have tapered off a good bit now thankfully. It's amazing how little you can do when they flare & how crying yourself to sleep is the only option. I just think we deserve more. It's so frustrating.

    I look forward to getting to know you better. And fighting this disease together. Thank you for adding my blog :)

  3. Can you pass this along via your blog, and to all your contacts?

    Lupus Foundation of America Needs Your Help -- Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

    Go to

    Click on the link "Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act," enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

    Please ask your family, friends and coworkers to call on your behalf as well.

  4. OMG! I am sooo happy I found your page. I see that you havent written for a while here and I hope that you write soon and visit my page as well. I am 21 and I was just diagnosed with SLE and arthritis this year. I believe my aunt has lupus but I dont really talk to her so I have pretty much been going through this thing alone. I hope to find a few people that I can relate to. Please visit my page. Thanks :)

  5. Alex, welcome :) I added you too & I'm so glad you found me. Feeling along going through SLE is absolutely terrible. That's why I started this blog! I look forward to getting to know you better & keep on keepin' on. It's all we can do!

  6. That was supposed to say "feeling ALONE"... dang typos!

  7. I noticed you hadn't posted for a while,I hope you are ok.I was just surfing and found your blog.We have alot in common. The beach, seashells, SLE, idiot doctors.You aren't alone.When I'm feeling like I am, I read about others, and it helps.Take care!