well well well


Today was my doctors visit. To start off, I had to have fasting bloodwork. I hate when that happens. I am not hungry until I hear that I cannot eat at a certain time. All of a sudden, I am ravenous. It is a mind trick, since my tummy does not need it but my mind is telling it that it does. Anyhoo, got the bloodwork done and we then discussed a few of the issues I am dealing with in regards to the flare I am in.

The first issue is my over/under sleeping. As many of you know I typically suffer from insomnia several times a week. When I am in pain, like now, it happens more often. Cruel joke, but that is what happens. On the other hand, I can also sleep around the clock at times as well. It is a cruel irony that when I need to function and would like to have that insomnia, I am usually in sleep mode and vice versa. It is to the point my hubs wanted me to mention it to the doctor.

You see, he is concerned that I am not normal and something is wrong. Hmmmm, guess what? I am not normal and something is wrong…I have lupus! After discussing this with doctor, I realized that the feelings of being wierd are really pretty normal for lupies. This whole sleep/not sleeping thing is typical for us lupies. It is not normal per se, as far as normal people go, but it is indeed quite normal for those of us with lupus. I knew this all along, but hubs would not shut up about it until I asked the doctor. So, I am a “normal” lupie. Not a “normal” person but a “normal” lupie.

I sometimes think others forget that I have lupus and expect things out of me that I cannot provide. I wish I had support for these issues, but it seems that lately they have been swept under the rug and “forgotten” and it has certainly not helped me at all. You see, when I need rest, it means I need rest. If I do not rest, then I will pay for it. If I rest, then the chances are that on the other side of the rest, I will feel better, not necessarily fully productive, but better.

I am also suffering from depression as well. When I bottle up these feelings of inadequacy and inability to function “normally” it makes me sicker, which makes me more depressed, which makes me sicker and so on. A vicious cycle gets set into motion and in the end, I pay a heavy price for it.

That being said, I have resolved to stand up for myself more and take frequent rest breaks if needed and to the devil with those who do not or will not understand. I have to look out for my health and since it seems at times I am the only one who is doing that, it is imperative that I stand up to those who belittle me or make me feel useless. I am striking a blow for others out there who deal with this as well. If I can do this, so can you! We deserve to be treated with dignity and respect. I am not the only adult int his household who can do the things I do, so when I can’t, then I will get help.

In the end, this journey is really getting me down. However, I am resolving this one issue once and for all. I cannot and will not be made to feel unworthy because I am not “normal”. I am sick, with a chronic incurable disease, and if you were ill, then you would be treated with dignity and respect. That is all I want too.

Okay, I am getting off my soapbox now and will move forward. This blog is such a great thing because it allows me to vent these feelings and helps to not internalize them more so that I get sicker. Thanks for all the support! I truly appreciate each and every one of you!