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.

my health update...

This is way too much information for most, but an easy way to inform my family and friends that have been following my health stuff....
I just got back from seeing my rheumatologist (that I LOVE). My blood work has changed from the last time I saw her, and my ANA (anti-nuclear antibody) came back positive. With all of my other labs and symptoms she was finally able to diagnose me with Lupus (connective tissue disorder). Though I feel worried (and a little like the wind was knocked out of me), I also feel hopeful, I finally have a name and course of treatment to help give me some relief. The other good news is she does not believe it has caused any organ damage so far. My plan is to be informed, stay positive, get treatment and FEEL BETTER!! I will start medication right away and be monitored closely by my Dr. Thanks for all of the notes and love and encouragement!!

Lexy's story (I shared for the GAL program)

I worked in the system of care with abused children, and parents that required supervised visitation with their kids due to their troubles, for 10 years before my husband and I became foster parents. I thought I was informed, but it wasn’t until the placement of our severely abused foster daughter that I discovered how much I had to learn. During this time I was introduced to a very important person in the lives of our children in care. Tons of people evaluated, looked at, talked to, worked for and on Alexis’ case, but it was undoubtedly her Guardian ad Litem (a volunteer position ) that was most dedicated and worked the hardest to find out what was truly best for her. Before our personal journey I knew very little about the program, but through our process I learned they are really the silent heroes, working for a population of youth that can’t speak for themselves. I can take you back to the day we got the call, and tell you little of our story…it was April 1 2007…..we received a call from our agency telling us that we were licensed, and asking if we were willing to take in a 19 month old little girl. She was being released from a week in the hospital due to abuse. Of course we jumped at the opportunity to care for her. Our worker warned us that she was pretty beaten up, so we would be “prepared” when she arrived. Nothing could have prepared us for the way she looked when she came to our home. She had multiple skull fractures, two black eyes, bruising all around her neck and cheeks, and most of her hair had been pulled out. She was skinny and pale, but she came into our home with a huge smile, laughing, hugging and trusting. She was assigned a case worker (we had 3 of those, before she was adopted), a child protection investigator, a behavioral specialist, and our family development specialist….just off the top of my head. Many of them were kind and helpful, but Lexy’s guardian was the ONLY worker that was with her from the very beginning until the day of adoption. Kathryn St. Clair was Alexis’s Guardian ad Litem (or what I like to call her Guardian Angel). Kathryn is a retired CEO of a non-profit who lives in Sun City Center. She devotes much of her time to volunteer organizations, one of those thankfully being the GAL program. Kathryn visited our house monthly, occasionally unannounced, to talk with us and check on Lexy’s progress. She would tour our home for safety and assure Lexy had everything she needed to thrive. This was our first foster child; we would not even have known that we were allowed to go to the court hearings if Kathryn had not encouraged us to so we could stay informed to better care for Alexis. It also helped the judge see our dedication to her.


Alexis’s mom was charged with the abuse and signed surrenders of her maternal rights. Her case went to trial and she spent 2 years in prison and is now serving 5 years of probation. Lexy has a maternal sister that was taken in by her paternal grandmother, but since she was not related to Alexis she was not willing to take her too. Her father has a total of 4 children with 3 different women. One had already been adopted, two live with their mother (that he was not paying child support for) and then there was Lexy. At the time Alexis was taken, he was unemployed and living with a friend. He was given a case plan to work to get custody of her, which consisted of only 6 months of stable housing and employment. At that time he also told the case worker that his parents were willing to take Alexis, but the case worker got little response from them. Kathryn heard this and took the 40 mile drive to the grandparent’s home right away. They expressed concern for her and wanted to assure she was safe and loved (they were understandably scared of the foster care system), but did not really want to start over with a 2 year old. They had raised 16 children between them and were overwhelmed at the thought of starting over. Kathryn assured them that Lexy was in a safe home. She reported her finding to the case worker which continued on with their home study for placement. She also shared with us about her visit, and their willingness to meet us. I set up a meeting right away (against the case workers advice) so they could get acquainted with us, see our home and know that their granddaughter was loved and cared for. Our meeting went great they seemed relieved that she was safe and happy. They contacted the case worker and let her know that as long as Lexy stayed in our home they would not be interested in taking custody. Lexy’s father’s time finally ran out and his rights were terminated. On November 23, 2008 national adoption day, sitting beside Kathryn (her guardian angel) Lexy was made a forever member of our family. There is no doubt in my mind that Lexy’s story could have ended quite differently had she not had Kathryn, her Guardian ad Litem advocating for her.

2010 Christmas letter

We continued to be busy, healthy, challenged, and happy in 2010. Rayne turned two in February and though he has been sleeping through the night for a long time now, he is still exhausting. He talks like a scholar and constantly. He knows his alphabet, numbers and shapes, but has shown very little interest in learning his colors. When his feet hit the floor in the morning he begins running, yelling, jumping, climbing, talking, screaming, hugging, kissing, and it does not stop until we put him to bed at night. He is spoiled, and opinioned, but also joyful and loving. He tells us often how much he loves us and enjoys snuggling. He is so busy and all boy!! I used to think mom was exaggerating when she talked about little Mike, I don’t anymore.

Lexy’s year began with us becoming painfully aware of some problems she was having in pre-k. She was in a small church preschool, and because of this we felt secure and safe that she was being treated lovingly and fairly, but sadly this was not the case at all. We cautiously allowed her to finish out the year. After lots of soul searching, professional advice, and prayer Monty and I decided that homeschooling would be best for her. We have unofficially begun this year and have started practicing. Since her birthday is right at the cut off, we will start kindergarten through the school system next year. I believe everything happens for a reason, and this experience is what opened our eyes and hearts to new options. We are excited and nervous about our new journey, but truly believe it is what’s best for Alexis. Right now we are exploring curriculum and really like the Waldorf program. Their mission is “to provide young people with the capacity for freedom of thought, empathy and initiative, so they will be able to make meaningful contributions to society and the world”. Lexy likes going to school at home and sometimes asks to do school work on the weekends. She still receives speech therapy twice a week, started a Daisies girl scout’s troop and is making new friends. She is strong willed and challenging, but sweet and loving to a fault. I feel honored to be the one to love and care for her and now to teach her.

Gary Consulting thankfully is staying busy. Monty has been working very hard and the business continues to grow each year. He has several good contractors working for him, and has many new clients.

I love staying home with my kids, it is my favorite and most challenging job I have ever had. I feel grateful I am able to do so. I have always been thrifty, but lately I have been taking it to a whole new level. I have started couponing, buying used, dented, clearance, and of course reusing. It helps me feel like I am contributing, and Monty appreciates the savings.

We bought a travel trailer in September, and absolutely LOVE it. We have been wanting one for some time, because tent camping with the kids (and Monty in that case) is just too much. We got a great deal on it. It’s a 2006 Starcraft with bunk beds for everyone. We have already camped at several music shows and had a blast. I love it because it is like homemaking away from home. Monty loves it because it is air conditioned.
We still have a passion for foster children and for that reason, we are still holding on to our foster parent license. I keep thinking every year our kids will be older (our life more stable) and we will be ready to foster again, but right now we just really aren’t sure. We are available for emergency placements and respite to help out other foster parents, but still are not taking any long term placements.

We have had another year of learning, growing and blessings. Our family grows stronger with every year that passes. As always we are thankful for all of your love, support, encouragement and friendship. Merry Christmas!

Healthcare and our family...

I live in fear because my husband is not able to get health insurance (due to a preexisting condition) and because we are self-employed…I have hope that in 2014 this will change, and I am thankful right now that he is healthy. Our life would be turned upside down if something were to happen to him. We in no way want a free ticket, just affordable healthcare for him (and so many others)…. Right now he has NONE, and has been repeatedly turned down when applied. I am very proud of Monty and anyone that knows him knows what a hard working, amazing, giving man he is. It breaks my heart that he continues to be uninsured and unable to get the health care he needs. The fact that people are trying to get healthcare reform repealed takes my breath away. If you could please just step outside of your four walls and see the effect it has on so many Americans…….. the effects it is having on my family.

Loosing our marbles!

I have been working very hard to find a behavioral program that works in our house. I wanted to figure something out that reinforced the good and squished the bad behaviors, yet was simple enough that everyone (including daddy) could understand. In all my years of working with children I have been trained in 6 different behavioral programs, was a trainer in one and created one of my own. I still find myself, trying to figure out what works with my own children. I don’t want to crush their self-esteem, and still set very clear boundaries.

I have figured out something that is working (so far) and thought I would share it with all the other mama’s out there. In last months Family Fun magazine I read a small blurb about a mom that used marbles to encourage her kids to do chores around the house. This planted the seed for what has become our new marble program. I gathered up an old jelly jar for each of the kids and put their names on them. I painted Rayne’s top blue and Lexy’s pink. Then I found a large jar (for the community marbles). I bought a big box of marbles and filled up the big jar. The kids can earn marbles for any and everything….. cleaning up, sharing, waking up dry, using the potty, listening, really just any positive behavior. They can also loose marbles for any negative behaviors….. like talking back, hitting, not listening and so on. When the kids earn marbles they get to go get them out of the community jar (count them) and put them in their own jar. When the loose marbles they have to go and take them out of their jar and put them back in the big jar. Lexy HATES having to take marbles out of her jar!!! Each behavior (good or bad) has a price, since waking up dry was a big one for Lexy at first she would get 5 marbles for that, now the she is waking up dry almost every day I dropped it down to 3. Then at the end of the week (we are doing it Friday nights) they get to cash in (or bank) their marbles. I have a box of small tokens that cost from 10 marbles to an entire jar. I have small toys, popsicles (they can eat in the tub), walks with daddy around the neighborhood…..in the article I read the lady had older kids and she used money, date night with one parent.

I also let the kids pick out their own stuff to put in their prize box. I am very guilty of buying my kids “little stuff” when we go shopping, but now they know if they get something it goes right in the prize box and they will have to earn it with marbles (good behaviors). I’m sure this sounds very simple and silly, but it truly is working….. I will keep you posted as we progress. It’s also fun when you are out somewhere and you remind the kids “Don’t lose your marbles”…heeheehee

While I am here I will also give you a little update on what has been going on in the Gary house these days. We have really been in a good groove lately. We have swimming (with both kids) twice a week, speech (with Lexy) twice a week, and tumbling. We are also hoping to start occupational therapy with Lexy soon. The kids have made a lot of friends in the neighborhood, and we spend many hours outside playing and planting. We are growing a garden in our yard and go to the beach weekly Monty has plenty of work, but also has a few contractors working for him, so he has been able to spend a little more time at home. He is also playing in the little band at church and he is a real asset to it. I stay busy with gardening (my new found love), looking for fun cheap places for us to go, discount shopping and I am just learning the art of couponing…… boy can it save a lot of money. I have to earn my keep some way. . I am also trying to get organized to start homeschooling in the fall. Life is so so good, and we are grateful!!

Growing and learning...

With my grandma’s passing last weekend I have been doing A LOT of thinking…… about life, motherhood, family, marriage, faith, but mostly about Lexy. I feel scared and sad for her. She has had way too much trauma and pain in her short little life, and even now as hard as I try to protect her, it seems I haven’t been able too. I felt confident and secure in her placement for preschool, but I was wrong. She is misunderstood, and picked on by the other children. I had only become aware of the situation after Christmas break, when I had a conference with her teacher. At this time (for the first time since she has been at this school) her teacher informed me that Lexy’s behaviors had isolated her from the other children in the class. She must have seen the surprise on my face when she told me this, because her response to me was “you had to have known” well I didn’t! I guess parents are the last to know. In our home and in other social situations with other children this has not been an issue. We have been fully aware of her being “overly affectionate” (or sensory seeking), her speech delays, and other learning (processing issues), but nothing we would have ever thought that would make her not accepted in a classroom. She seems so loveable to us. We have worked closely with a therapy group since day one of Lexy moving into our home. Lexy receives speech (from a very seasoned, bright pathologist, twice a week), did pre-k boot camp (through the therapy center), and has received occupational therapy. We have worked very hard to be proactive and aware of Lexy’s behaviors and needs. Next Monty started noticing that she did not like going to school, and when she would walk into the classroom she would get as far away from her classmates as possible. I reached out to my resources (talked with my mom and other seasoned teacher and mom friends) and asked her therapist to observe her in the classroom. She also felt Lexy was not herself. There have been several other incidents including her not getting her juice we pack in her lunch, because she does not ask for it to be opened in the first 5 minutes of lunch time…. the Easter egg hunt fiasco, and other interactions observed. Monty and I have decided to allow her to finish out the last couple weeks at this school. The administration has shown concern and promised to stay close to her during her final days there. Then we have decided that I will home school her next year. This is an exciting, scary new adventure for us. Since her birthday is August 25 just before the cut off of September 1, we sort of have a free year to give it a try. I have just learned of the k12 program with the public school that provides all resources, curriculum, books, and even a teacher to monitor her (our) progress. I think the structure of this program will be helpful for both of us. Her therapy group (which has been our life saver) is also on board to help with curriculum, evaluations, and any other needs we may have.

Lexy is not hard to understand, not for me (and Monty) anyway, maybe it’s because I am her mom. She is affectionate, lovable, kind, silly, funny, stubborn, smart and amazing!! She needs structure, love and understanding. She sometimes needs a little more time to process than other children, but she is bright and as capable as any other child her age. Monty and I have discussed at length with each other, and professionals, and believe in our hearts that we are making the best decision for Lexy. It may not be easy for me, but I am honestly trying to go into it with eyes wide open, and hoping to learn right along with my daughter.

I welcome any resources that anyone knows of. We will also be looking to set up play dates!! I have such a wonderful network of diverse and seasoned parents, I look forward to any ideas and suggestions you may have. Any prayers, or good energy that you can send in our direction would also be greatly appreciated!!