Monday, October 6, 2008


So, I've been kind of riding a crazy wave of lows and highs recently. Totally unrelated to Lupus, but kind of related to it, I've just been having a hell of a time adjusting to my new life with all of the accompanying changes I discussed in my last post. It's really, really hard. I have moments where I feel like I can see all of this possibility and I have hope - hope that I'm going to go into remission, hope that I am going to really find myself and figure out a better way to balance my life and emotions, hope that I will meet someone else that I love and feel as connected to as I did and still do with my ex. But then I catch a simple cold and it turns into pneumonia within a week's time. (I've been dealing with my sixth or seventh episode of pneumonia for the past couple of weeks. When I went to see my GP, she wanted to hospitalize me immediately, and basically said things which made me face the reality that I do have a very serious illness - something that I think I try to ignore a lot of the time - it was upsetting and depressing.)

Or I come home from work and I am alone. Or I go on dates with someone and then think - how am I ever going to discuss all of the things that I carry with me - kidney disease, severe sun sensitivity, discoid scalp lesions, the crazy body changes that accompany both nephritis and the countless and seemingly endless medications I'm on, the flares when I can't get out of bed and every movement of my joints causes searing pain that makes me cry out. I'm afraid this burden is too much for anyone but me to bear - and really it's too much for me - I just don't have any choice in the matter.

Sometimes I feel like I'm too tired to keep on fighting, like i've passed the saturation point and I just don't have any more fight left in me. I don't want to work, I want to be taking care of myself full time. But without work I have no health insurance - that's not the only reason why I work and I actually really love my job, but it sure would be nice to take a couple of months off and just do yoga all day and have the time to cook incredibly healthy meals, and take walks in the woods, and just regroup and recenter.

But then the highs come in and I feel blessed to be in this world at this time in history - I feel energized to do something meaningful and positive with my life. I feel that I as an American, but also as a world citizen, am uniquely privileged to be able to be experiencing what I can only call a precipice where we can either go further down, following systems that no longer work or we can move towards something new, something stronger, something more conscious. At least I guess I feel that within myself and I see that feeling reflected in the world around me. There's an energy in the air - an energy of change and I don't think it's coming just from all of the political slogans.

Anyway, I guess I wanted to share these thoughts with you all. I think all of us with Lupus know that it is a constant battle to try and find some balance and semblance of normalcy. The spoon theory explains this well. I know I will keep fighting and keep moving forward. But sometimes I'm just so tired. Sorry if this post is depressing.


Nicole Gonzalez said...

You can't discount the fact that it sounds depressing because you know... it is depressing. It is a part of what we live with. It is always darkest before the dawn. And also, from the darkness, God created light. Keep your eyes up.

My 13 year-old daughter is the one with lupus but we all live with it. She has been going through this phase of not believing she is pretty since all her hair fell out. She won't listen to what othrs say, just what she believes to be true. However far from the real truth it is.

I tell her the same I will tell you..."whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable–if anything is excellent or praiseworthy–think about such things."

Keep that head up.
Nicole Gonzalez
Gilroy, CA

frederick said...

Hi Butterfly Girl,My name is April and I have been diagnosed with lupus. I have battled this disease since the age of 14 when my knees started to swell. I am now 41 and just getting my diagnosis. My battle took me all the way to another country where I found a doctor that listened and was not afraid to answer questions for fear of being sued. Like you when I got my diagnosis I felt like I could exhale and put a face on this phantom. Doctors here in the states are no more than legal drug dealers and pushers. My mother had lupus and died from bone marrow depression due to "cytoxin therapy". Don't want to scare you anymore than you already are, but all the drugs that are used as you already know are lethal. I am sour about the run around I have gotten here in the states, but I guess it was meant to be because it led me to a good place with a good doctor that put me on a treatment that has virtually no side effects. I have been on it now for three months and by the grace of God I am getting better day by day. We know the symptoms so I don't think I need to list everything I battled. My husband Fred has been a great support and has hung in there for me. If it wasn't for his fight to find this doctor I would be in a world of hurt! Literally!! Don't give up. There will be someone to come into your life and introduce you to a doctor or therapy that will change your life forever.

Anonymous said...

Hi Butterfly Girl, I found your link on the LFA website. I'm old enough to be your mother but I battle similar feelings of denial and then depression when my flares hit, or just the fact that I have to deal with the whole medical system. Still, I believe we all need to find meaning in the destiny we've been given...and for me, its been the grace of learning to receive help from others when my whole life I've been a giver! I am adding you to my blogroll, my dear. I will read you and support you- it bothers me most when someone so young has to deal with all this!

kristingottschalk said...

Living with lupus is a challenge for most of us every single day. It will take a strong, loving partner to help you cope with the disease. I have been dealing with it since I was 15, now 30 and it is still difficult.

Don't loose hope and do the things you want to. My first doctor told me I could never have children and I am blessed with two. I now can not have anymore due to complications from my lupus , but feel blessed to have them in my life.

Unfortunately the ups and downs never seem to end, you just have to smile and push threw the bad times. I wish you the best of luck with your ongoing struggle and hopefully you can find a treatment that really helps you.

Eram said...

Being new to this illnesss, my daughter was just kinda diagnosed with it... wondering how your job deals with your absences???

Siti Salina said...

Hi Butterfly girl. I'm siti from malaysia. Found your blog from LFA. Your situation same as me. Been diagnosed with lupus last year just one month before my wedding day. All the best thing we could do is to learn coping with the disease. Learn to cope at work, socially and personal life. Sometimes i wish to take a long vacation and do what i want to do. We have to be in positive spirit and live healthily.