Monday, October 17, 2011

Waking up with the wolf...this will work just try it

When I went to sleep last night I did not really think I would wake up renewed with vigor.  I know that when I wake up with the wolf, I am in pain, that is if I have even been able to sleep through the pain.  I eat two crackers and take my prednisone wait a few minutes and take my migraine medication and wait...for the pain to gently subside so I can get out of bed.  I need to take my boys to school, thank god for the heated front seats.  I am just starting my daily drug cocktail which never ends because I take my synthroid in the middle of the night.  I am always up anyway, and I cannot take it within four hours of most of my other medications, this is the only way I can make sure nothing interacts with it.  Stairs are always fun, I hate them and in turn they must hate me my legs scream in pain, up and down, up and down.  People in AA take life a day at a time, with lupus I take life minute by minute, I think I know the wolf but it laughs at me and will throw anything in my way.  Day by day would be a blessing, not that the disease of addiction is anything to blink at, it is a very serious disease that kills many.  I know how it feels to have people not take your disease seriously, I have people all the time that tell me, "I know someone, who knows someone that's a friend of my cousin, that has lupus, and they are fine and very active, more than I am!"  It is said smugly like I would choose to not walk for five months, like I am doing something wrong, maybe if I exercised more, I used to run everyday and lift weights 3 times a week.  Maybe if I ate healthier, I did that b/c I was too sick to eat much of anything, nothing changed.  Maybe if I thought more positively, or meditated, I do both nothing has changed.  Maybe if I got a massage, I tried that I couldn't get out of bed for three days after.  Maybe if I tried yoga, I did that I could only do the breathing and had a wonderful one on one session, it made my breathing even more painful than it already was.  Maybe if you try, herbal remedies, ha that's dangerous for me, I have to get the okay from my rheumy and that is usually a no because these are drugs too, just sold at the GNC.  If it boosts the immune system it is dangerous for me.  Why, because it is my own immune system that is attacking me.  Why, because that is what lupus does, because my body hates me!  Drink more water, I drink almost a gallon a day, hasn't helped.  Everyone has a remedy that would help them if they had the wolf, they wouldn't be as sick as I am because they know how they would deal with this disease.  It would be better than I do, and they would be cured.  I am not positive enough, do not exercise enough, don't eat well enough, don't stand on my head enough.  I wish any one of things things would work, I have tried and before my diagnosis I tried a lot of herbal remedies because I never felt well, nothing worked. 


  1. When i get I know some one comment it's usually, I knew someone that died from lupus. Which I hate to hear, especially when I first got sick.

    I try everything too, but as much as I try all that happens is that I end up full of fatigue. The most I do now is rad all day. I get to go to another place and tie and not exsert myself.

    Wouldn't it be wonderful if there was a wonder cure for us.

  2. I am so sorry you go through this as well. I wish there was a cure I am hoping we will have one someday sooner rather than later. I hope there is also a vaccine so no one else will have to get this disease and suffer as we do. Thanks for responding. xoxo

  3. Dear, dear Marissa,

    I am shocked to hear about all this which with you are suffering. I was on steroids for a long time. If at any time, you want to talk, please call me at any time!


    Cindy Goldberg

  4. I just saw this post Cindy, thank you for reading my blog and for being kind and thoughtful. xo