Mid July update

So much has gone only, physically, but especially emotionally. Let me explain.

Last week was our annual family camping trip. I have had a TON of anxiety regarding this trip because my medication is on a specific schedule and the mornings are already so bad, I was nervous about not being able to walk to the bathroom on my own. At home I have furniture in the right place for me to hold myself up to the bathroom. Mornings are so bad, so you can see where my reservations come in (not to mention late nights and a lot of physical work).

This year we opted to meal share with another family, and only God knew how much that would relieve from me and especially from David when it came to meals & such- don’t get me wrong we did help out but I was incredibly blessed that my friend had an RV so cooking and clean up was MUCH easier.

I kept pretty good track of my medication schedule, the mornings were BRUTAL and I know that two days I had maxed out on my pain medication and desperately needed more. On Wednesday a group of friends decided to do the ropes course, something I have ALWAYS wanted to do. Something I knew in my heart would tax my body so badly that I would pay for it…. I just didn’t realize how much. So in the heat of the day (Note: heat & my lupus are a terrible combination, so I already felt like crap), I put on the gear and I was the second to the last person to scale the 25 foot tree. I was incredibly proud that I made it that far but I was not meant to make it much further. There were some hiccups in the tree that gave us a 30 minute pause and then I moved across the wire, and again another 15-20 minute pause. By the time I climbed around to the other side my body said no more, and since I couldn’t make it back, my legs were jello and my mind was woozy they propelled me out of the tree and called 911. (for more exciting photos and stories stay tuned to my family site.)

So I paid BIG time for that one, I played softball that evening and came back to camp with a migraine. Again, no more pain pills for me so I climbed into bed and slept as best as I could.

The next morning was rough, David helped me walk ½ way to the bathroom, but I got to embraced and didn’t want others to see him needing to help me and I got the strength to go the rest of the way but I collapsed once I got inside. I don’t know why I am so scared to have others see how bad off I really am, maybe because I fear they won’t acknowledge it, or they won’t care.

So the rest of the week was restful and full of bruises and knowing when to ask for help. David is the most AMAZING husband. I just needed to give him a look or whisper in his ear and he was right there discreetly helping me do whatever I needed.

Right now the hardest thing is realizing that those that I thought were dear friends aren’t. Over the last few months I have seen one of two things, first, friends who I thought were true and there for me disappear, and friends who I had never really been close to show that they are true caring friends.

But at family camp a comment was made to me by someone who I thought was a dear friend; it’s possible I am reading into the comment, but it was so hurtful (and no I probably won’t address the situation because I don’t feel like I need to justify my disease). So here is the situation in a nut shell.

I fight HARD to not let my lupus or fibro show, I fight HARD not to let it bring me down. I plan and I plan and sometimes those plans change because my heart desires me to accomplish a task that I probably shouldn’t push myself to do- that’s the dare devil in me .
So when comments are made that it is unfair that I planned rest time or whatever so I can plan to do more than I should hurts and it hurts a lot. I wish for one day I didn’t feel like crap all the time. I wish for once I could go camping with my family and not stress about the fact that I am going to flare big time the next week. I wish people would just understand that when I have to plan rest time and then I change it because something else of greater desire come up that I can do that, I am willing to suffer the consequences.

Don’t send me to bed early because I want to enjoy others company instead of resting- I know In the back of my mind what I will pay for and I don’t need others pushing me away- that is of course unless I am being obnoxious- than go ahead (LOL).
I am so blessed to have those around me that understand. David was wonderful and the Russell’s offered me a warm place to sleep almost every night- I just didn’t want to leave my family alone in the cold and then get caught snoring to loudly .


So today is Friday and my flare is getting progressively worse as the week goes on. I have a feeling this will be an extremely relaxing weekend, I need it. I need to get through this flare as soon as I can.