Update

I am tired. Incredibly tired. I am tired of being strong. Tired of hiding my pains and my exhaustion from those around me. No one has asked me to hide them, but I do. I don’t want others to feel sorry for me, or to take “special care” of me. I just want to be treated normally. But I am tired, and I feel that I don’t have the strength to hide my pain anymore. It seems so weird to say, but right now things are bad. I have been flaring for two weeks. Now I feel a cold coming on and life is not slowing down for a couple of days. I refuse to miss Halloween with my son, so that will take most of my energy for the weekend. I’m glad I don’t have many plans on Saturday, but the idea of spending the day in bed is overwhelming sad. I want to be involved in my family’s life. Overall, I’m tired of being strong. Is it okay to let it go? I don’t know, I don’t want pitty, but I want people’s care- does that make sense?

The other big issue is I am having other health issues and I go into a specialist on Tuesday. I am very scared that he is going to take one look at me and say “It’s Lupus”. I may lose it. So stay tuned to see how that goes.

A close co-worker came to me yesterday and told me her daughter was just diagnosis with Lupus. I actually started to cry- which probably scared her a little. But I don’t want another person to have to deal with this, I want to take action, I want to yell from the roof tops that we need to make awareness for this disease as high as we can and stop it. But how do I do that- I am just one person.

Lots of questions, no answers. I emailed the Pacific NW Lupus Foundation to get involved but haven’t heard from them, do I really want to work with a nonprofit that doesn’t communicate with people who are asking to help? They even have Board openings and I would love to know what that would entail. It’s time to make this disease known!

Thanks for listening to my random thoughts.

Another Monday

I went home and was really sick. It’s still two days later and a meal has not stayed where it belong. I just wish I could lose weight when I get like this (LOL). I went back on the one pill that did work for a while, I just hope it kicks back in and soon! I am starting to feel weak from the lack of food in my body, but I can’t help that. How frustrating. Oh well, I think the weekend was well worth the pain.

This week I go in for a pelvic ultrasound. I am really hoping that they discover what is going on with me and my pain. I don’t want them to find nothing and say it’s just Lupus- deal with it. That is so frustrating and heartbreaking. I’ll keep you posted.

not a lot happening this weekend, but I do want you to know that the Lupus walk is this weekend and we would LOOOOOVE for as many people to show up as possible. If you can't make the walk, would you consider donating to our cause?

go to www.firstgiving.com/lewistollefson to join our team or to donate to such an amazing cause!!!

Exhaustion

Have you ever just felt like you were on the verge of collapsing? I feel like that a lot, and I wish I could just give in to the feeling. Today is one of those days. I have been changing my medication. I saw my Rheumy in mid September and was relieve when she took me off the one medication. I was told to give it two weeks and see how I do. I completely forgot all about it, to be honest, I hate taking it, so I was glad to be rid of it. Well without realizing it I came upon the two week window and I became very ill. Everything I ate didn’t stay in my stomach and I hurt, oh how I hurt. Then I realized it- two weeks was up, the medication was fully out of my system. So as my doctor had told me, I started it back up. So here I sit today, medicate and just trying to get through the day. I am holding in there, but sometimes life is just hard.

So now I am struggling with deciding if the side effects are worth the cure. With the one medication I was just told that they found out that 70% of the users learned that their body quit losing weight. That is definitely me, I was wondering why I was gaining and not losing anything. I am good at being able to eat and not gain a ton of weight, so the weight gain was a huge shock to me. So can I deal with going off of it and have the pain, extreme pain that is unmanageable or do I continue to get fat. Why can’t they make medication that doesn’t cause weight gain. Or how about have a pill that has a side effect of weight loss. Ahh I can dream can’t I.

Join us for the Lupus walk next Saturday the 18th, we would love to have TONS of people show up!!