Our home away from home.

Camper Love!

Happy Spring

I am overdue for an update. I am bad at communication when I don’t feel good. It’s been a rough month. Spent an afternoon in the ER, another visit to my primary to find out I likely have a stomach ulcer. I started a medication to treat it in hopes that I will not have to have more invasive tests and treatments. I think it is working.

So since my last update (and Dr. appointment), I have put almost all of my energy in eating, clean, unprocessed and healing foods. I have found local organic markets, started my garden, read books, watched documentaries, and vegan cooking shows. The first weeks of my dietary changes I felt awful. It was likely a combination of having the stomach ulcer, and my body detoxing. I have been focusing on eating high iron foods, getting plenty of protein, and as many super foods as I can. I am also on the waiting list to see a holistic dr. that specializes in autoimmune diseases. I have been acquainted with him for many years through my hippie family, and he has a great reputation. He spends a lot of time with his patients and my hope is that he will help insure that my nutritional needs are being met. This week I have had several days of feeling better than I have in a long time. I hope to continue in this direction. I have never been so motivated to get healthy. I have also never had such huge consequences for not taking care of myself.

I have joined one of the local support groups in the Lupus Foundation of Florida. It has been therapeutic and healing, to meet other people on a similar journey. The women I have met are amazing and inspiring. I am so far from where I started being angry and refusing to have Lupus as one of my causes. Now I am organizing a team for the upcoming walk, and helping with the facebook page. I still feel afraid many days, but am working hard not to indulge in self pity, but if I take a step back and look at the whole picture. I have come a long way and I know it could be a lot worse. 
The kids and I are loving being in my yard and garden the weather has been beautiful. I have tons of sprouts and plants started. Can’t get more local and organic than my own back yard, I also have some new amazing flowers thanks to my sweet uncle. We are looking forward to camping at our favorite music festival at the end of the month. So I plan on feeling healthy and strong to enjoy it. Thanks again as always for all the love and support.

Kids watching a 3d movie!

Gratitude

Again I am grateful!!
My sweet cousin came over last night to be at the house this morning and keep the kids for my doctor’s appointment. My mom met me there and I was feeling pretty anxious. I see my doctor every three months and that’s a long time to not feel good. I had been having better days, but this week was pretty rough and fresh on my mind. I make notes on my symptoms, my research and all the questions I can think of so I will be prepared for my 20 minutes with her. I have been comfortable with my doctor until now, but today I really realized that she is the perfect doctor for me, and it is not a coincidence that I ended up as her patient. She came in with my labs in hand and a smile. Lots of my numbers have improved, my ana, and my dna came back negative (yeah), my white cells are still low and I am still anemic. I don’t know what all of it means yet, but my doctor was very encouraged and reassured me. She explained to me again that the medication I am on takes time to build up in my system and the hope is that I will continue to see improvements. She was not surprised that I am still having really bad days, but the goal is to have more and more good/great days. She suggested that I follow up with my primary doctor about a few pains that she does not believe are related to lupus, but should be addressed because if I my lupus (which is unpredictable) were to take a turn for the worse, they could complicate each other.

I also talked with her about changing my diet to a completely organic and half raw diet. I do okay, but there is defiantly room for improvement. She said a “clean” diet can make a huge difference in inflammation… basically lupus is inflammation of every body system. Pesticides and chemicals used to grow and process food can cause more inflammation, which is no good for lupus at all. I am also learning in my research that our food is missing vital nutrients, which makes us deficient, and causes more illness and the inability for our bodies to heal themselves. So with my doctors encouragement I told her “I am on it” meaning I will change my families diet, and she replied “I have no doubt”. :)
My mom shared with her that I have joined a local support group and how it’s been helpful to me. She told her that I have begun helping with their facebook page, and I am getting more plugged in than I planned. The doctor was very sweet and told me that she thinks it is wonderful that I am involved. She told me how awful she feels for her lupus patients especially young women/moms (because this is the population mostly effected). She was grateful for my involvement and thanked me for helping take care of “my girls” meaning her patients, and gave me a hug. I offered to bring her information about the group so she could pass it on, and she was thrilled.

I did not even bring up the study drug, I decided it wasn’t something I am willing to do right now. I am going to give my diet a complete overhaul, and allow my body to do some of its own healing along with the medication I am on right now. I gained a whole new respect for my doctor today, she is compassionate, kind, and is not pushing drugs.

So I left feeling encouraged and energetic. On my way home I ran in the store to pick up a few things for my garden and Rayne’s birthday. I came home made lunch for my family. Grabbed my kids (including my 15 year old neighbor) went to three stores, the hydroponic farm, and by my mom’s office. Got home began dinner and was exhausted (could hardly put one foot in front of the other)…. I was quickly reminded to slow down. I am not there yet, and desperately need to learn to maintain a balance. I have to continue to accept that I am still sick and according to my doctor a long way from remission, but it is still my goal. It’s ALL good!

Today I am grateful for….
Family that comes and takes care of my kids so I can focus on my health
My mom that goes to EVERY doctor’s appointment with me
A doctor that cares about her patient and understand their needs
My husband that picks up the slack when I am sick and offers to make dinner happen
A loving, physically strong 16 year old neighbor that I need her as much as she needs me
Friends that take the time to send me notes and ideas that DO help me
An amazing group of colorful women that share my disease and “get it”

Short family update-
Lexy finished her Kindergarten curriculum, and is starting first grade work. We are all going to monster jam on Saturday to kick off Rayne's 4th birthday festivities and have his airplane party planned for next weekend at grandma’s house. Life is really good!

I started this yesterday, but was too tired to finish….

2011 Christmas letter

This year has brought many joys and a few challenges for our family. Rayne turned 3 at the beginning of the year he is still so busy, confident and challenging. He is also affectionate, smart, and the most handsome little boy ever. He learns quickly and has become quite self sufficient.

Lexy is doing well homeschooling. We are using an online curriculum that she really enjoys, and it helps me keep track of her records electronically. We have a very relaxed schedule that works well for her and our family. She continues to receive speech and occupational therapy, and is learning to read. She is a Daisy in girl scouts, and is as sweet as ever. Sometimes I can’t believe we don’t share the same DNA, because she is a perfect fit in our family. Our kids make us very proud.

I have spent much of the past year(s) sick and not knowing why. After many doctors’ appointment and tests I was finally diagnosed with lupus. I am still learning to manage the disease and trying to get on the right medication. I am not there yet, but hopeful now that I have a diagnosis I will get a system that is able to manage my pain and symptoms, and will return to my “normal”. On the up side lupus has been a reality check and forced me to slow down, prioritize, and be thankful.

We are going into our 5th year of being foster parents. Due to my illness we have only taken a few short term emergency placements, but they have all been special and I know they came to our home for a reason. The cases are sad, and I enjoying providing as much love and “stuff” I can give them on their short stays with us. Meanwhile we have a teenage neighbor girl that spends much of her time at our house. She comes from a broken home and also has a sad story. She is a helpful, good kid and keeps my bleeding heart distracted.

Gary Consulting is busy as ever, and we do not take it for granted. Monty has a great group of clients, lots of whom he has worked with for many years. Their businesses continue to grow, so does ours and we are grateful!

We are still enjoying our camper, and attending music festivals. Though we have been faced with some challenges this year, we are blessed.

Merry Christmas!!
Love and peace,
Amanda (Monty, Alexis, and Rayne) Gary

Celebrating Lexy Rose

Last Friday was National Adoption day, and I have been doing lots of reflection on my sweet daughter. Three years ago tomorrow on National Adoption day Lexy was made a forever member of our family. Lexy has birthdays, the day she was placed in our home and adoption day, and it is so fitting that she has so many “days” to remind me how special she is and how blessed we are.

She is beautiful, kind, sensitive, and loving. Seeing her everyday, I forget how much she has grown and learned since her placement. At 19 months old she did not talk, she made noises and gestures….. now she is learning to read. The first year and a half of her life was tough and I am sure she endured more hate and pain than any child should. We only know bits and pieces and the incident that placed her in our home. She came out of her painful beginning only knowing how to love (and eat). She has a bigger heart that anyone I know. She loves and accepts everyone just the way they are. She is not deterred by appearances. She sings from her heart her own songs she makes up about loving everyone without concern if she is on key. She is sensitive and aware of everyone’s feelings around her and she tries to ensure everyone is happy and feeling good. How lucky am I to be her mom!! She has taught me so much more that I will ever be able to teach her. I love you Alexis Rose Gary and am proud to be your mom.

Slow and steady

We did decide at the last minute to go camping at the Riverhawk music festival, and had a fun weekend. I came home feeling a little run down, but not nearly as bad as I have in the past. I am finally beginning to feel better. The higher dose of medication made me feel yucky at first, but I think I am getting past the side effects and it is helping me. I have a busy week getting ready for a trip to Georgia to visit Monty’s family for Thanksgiving (that includes Christmas and family pictures with them). I also have a lot of domestic chores to catch up on since I have been sick for so long. Just cleaning the house brings me joy and accomplishment today. I hope I can get it all done :)

I don’t love lupus yet, but I no longer despise it. At this moment I am not afraid! Lupus is forcing me to slow down and prioritize things that are important. These are all steps in my journey and I am happy to be moving again.

Love!!

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.