Blessing in disguise

I was very bummed when I found out I did not qualify for the study, but it is really a good thing. My lupus is not active enough now to qualify and this is wonderful news. It means at this time there is little threat to my organs. On the down side the lower numbers do not affect how sick I feel, we will not be getting the financial help and access to the study staff. My doctor doubled the anti malaria medication I am on and gave me something else to help the pain (that cost $250 with insurance) ugh! She will recheck my labs in 3 month with hopes that it is not progressing. I asked a lot of question and only got a few answers, but it is because there really aren’t answers. With that being said they are making huge strides in understanding and treating lupus. There is hope and I do have some peace with my disease (today anyway:))…. Not loving it yet, but I will get there.

Though terribly disappointed about having to cancel our camping trip…. I am still thankful! I have an amazing, friend going to help with homeschooling Lexy until I begin feeling better. I am so appreciative of all the love that I have been shown to my family. For now my numbers are low, my kids are healthy, my husband has work, and I am grateful!! I am reminded daily that it could be worse, that families are struggling with much bigger thing than I am.

Everything happens for a reason.... Right?

So the kids have been super excited about Halloween and their robot costumes that we have been planning for a month. Friday we gathered all our junk and put together some pretty cute (if I must say so myself) recycled robots. The kids took third place in a local costume contest. The events were fun though crippling for me. Lupus has the ability (no matter how hard I try) to seal the joys of life and motherhood. I haven’t learned how to stop this yet. So needless to say I have physically suffered for my efforts.

I called the study doctor this afternoon and found out that I did not qualify for the study due to the results of my blood work. I can’t pretend I am not incredible disappointed. The study was a little light at the end of the tunnel and has just gone out. There is a stage 2 study that starts in December that could still be an option, but as the numbers go down the risks go up. I have a follow up doctor’s appointment on Thursday.

Love!!

Seeking balance

We all have eye opening (life changing) events that happen in our life.… well lupus (not by choice) has become one of mine and has lead me to a new journey of self discovery and health. I am starting to realize that I have to understand, accept and even love my disease in order to heal, I am not there yet!! It’s a process, but at least I know what needs to be done. I have just started reiki, beginning to make meditation, and visualization a daily priority… sprinkled with some cognitive therapy and dietary changes. I will still continue to peruse the medication study in hopes to be accepted, but am quickly learning the importance of emotional, spiritual and mental health as well. I am reaching out to other professionals in holistic treatment to help me reach a balance in treatment and in life. Monty and I are taking baby steps towards a major dietary change and are seriously looking at the macrobiotic diet. I have expressed how lonely lupus is, but in reality I am not alone on this journey. I am grateful for all of the love and support that I am blessed with. I continue to welcome any ideas, feed back, or referrals to resources that may be helpful. I have already received so much guidence from my family and friends… that has helped me get to this place. I plan on continuing to share my story in hopes that it may help someone else. We are all connected, but I am finding that opening ourselves up, helps us better feel those connections. It is much easier for me to share the pretty uplifting parts of my story (my life), but I am also discovering that it is therapeutic for me (and hopefully helpful to others) to be honest and real about my weaknesses and challenges. So here we go….

I am limited to what herbal supplements I am able to take due to qualifying for the study, but beyond that I am pretty open :)

P.S. I also still have family blog plans, so I have a more appropriate place to share our stories.

Roller coaster

Since my lupus diagnoses I have had quite a ride. Being sick for so long my initial reaction was relief almost happy (sounds crazy I know). I was almost convinced that it was all in my head, and believed that is what everyone else thought. I accepted the diagnosis and began taking an anti-malaria drug exactly as prescribed and completely expected to come home and begin feeling better. I just wanted to go back to my “normal”.

Well it hasn’t exactly worked out as I planned. I have only been getting sicker, more afraid and angry. I constantly run a fever, migraines, aches, pains, dizziness, hives, joint chest and stomach pain just touches the surface of my daily struggles. Along with all this, there is this constant nagging worry that it is damaging my organs. It is an indescribable feeling of having your body battle itself. I feel more isolated and alone than I ever have in my life. I have started to meet people that are lupie too, in hopes that these connections will help me feel not so alone in this struggle. I know it sounds so selfish (I know it could be worse) but this is not my cause. This is not what I want to deal with on a daily basis, not what I want to spend my time and energy learning about. I had a different calling, a different purpose and path. It has been explained to me that there are stages of emotions you go through after a diagnosis of a chronic illness…. Clearly I am still stuck in denial and anger. Hope it passes quickly!

Now about the study drug: Since my condition is getting worse my doctor (that I still love) suggested that I apply to try a new study drug. Reading the drug the side effects scared me, but so does the disease. Mom and I attended my first appointment and thankfully found hope and encouragement. The drug is an injectable immune suppressor, but it is more targeted at lupus. I am still in the beginning stages of qualifying and hopeful that I get accepted. The study can last 2 years and I have a 2/3 (that’s better than not) chance of actually getting the medication, and there is an extended study that can last up to 6 years. I can continue with the anti-malaria medication I have already started. This is all good news!! The last drug approved for lupus was in the 50’s (besides Benlysta that costs $36,000 a year and was just approved weeks ago) and it is the anti-malaria drug I am on. The other major benefits of being in the study are having all labs, medications and dr. appointments covered. Our family is in a scary time with our health insurance or lack of right now, so all that is huge. I will also have an extra doctor watching my condition. The nurse that is in charge of the study and kind, understanding and available!! The drugs that are on the horizon are more specific to lupus and autoimmune diseases. They are just making some new ground in these medication and I am hopeful to be apart of it.
I draw strength from the love, prayers, thoughts, notes, and energy being sent my way. I know I am blessed and hope to be back in the light soon.