Looking back at where we have been...

I  took a look at our caring bridge site tonight and saw my last note. It was dated early 2009 and I noted that in 8/08 we had killed Babesia and as of 1/09 we were officially starting treatment for my husband's classic Lyme infection. It seems like forever since we were in treatment. Scott was in IV therapy from Oct. 2007-March 2010. By the beginning of 2010 we were hitting Bartonella hard and his numbers went down. Once his line fell out of his chest in March he was given a break from IV's. Here we are 1.5 years later and his blood work shows that his Bartonella numbers have doubled again. It is defeating to know we worked so hard at something and were so close to now be back where we started. When it comes to Lyme Disease, I firmly believe it can not be eradicated and that makes me very sad.

Lyme Disease Ramblings

It has been too long since I have written. It is time to get this thing updated and to keep up on the Lyme world. I am afraid that we have not been very good advocates since my hubby has stopped IV treatments. He spent 2.5 years on IV's that consumed our life. They were twice a day, 3 hours at a time, 7 days a week. It really was his full time job. He was at death's door more than once, had his body flooded with Ammonia, had his organs shutting down and was just too sick to do much of anything.

It took us 4 years to get him on disability but we are so thankful for that. It will be 2 years in January although it has only been 1 year since we were allowed to get the entire amount. For the first 9 months 80% of his disability went to child support while the courts took their time working out the child benefits. The mom was getting hubby's 80% plus the additional child benefit on top of her 70,000+ a year job. It was really tough on us especially when I lost my job that same Jan. We moved that May and I was lost in the unemployment system for 6 months. Our only income was the $200 a month we were getting from hubby's disability. Talk about hard times!

I am very thankful that we are in a different place now. I was jobless for 15 months. Not getting unemployment for a total of 9 of those months and working 2 part time jobs to try and keep food on the table. We grow when times get tough don't we? I got a job in March and still love it. A paycheck is so exciting for me! I still can't believe I get a paycheck every 2 weeks! My hubby is taking another break from antibiotics because it affects his mind so much that he wants a clear head. It's cruel, isn't it? You are sick and need to kill the bugs but when you don't treat them, you sometimes feel better. Once you start to do the "right" thing and kill the bugs you feel HORRIBLE. What kind of life is that?

What are some of the symptoms you HATE due to the treatments? Are you contemplating taking a break from your treatment to get some relief?

Lyme Disease TShirts for Lyme Disease Awareness Month : To Celebrate Lyme Disease Survivors & Fighters

My second new design to help raise awareness for LYME DISEASE is our new LYME DISEASE SURVIVOR shirt. It was designed to celebrate the fighters who will survive Lyme Disease and for those who have already survived and moved on. While my husband was in IV therapy I learned how important it was to encourage him in his fight. Lyme took so much from our family and we finally feel like we have made a dent in the disease and are on the verge of getting back to a normal life....so this shirt celebrates the return to LIFE!

You can purchase this design at our Lymies Unite cafe press store. This design is currently available on a black shirt only. You can also click on the Tshirt (below) to go directly to the page to buy that shirt.

Lyme Disease Shirts : NEW Designs for Lyme Disease Awareness Month

I always have great intentions for Lyme Disease Awareness Month but life always gets in the way...which I guess is a good thing if Lyme isn't keeping you down. My husband was on IV therapy for 2 years and 3 months before his Groshong catheter fell out of his chest in March. He was so excited NOT to have a foreign object/tube sticking out of his body that he made the decision to take an IV break. His health has steadily improved since IV's and his doctor was planning on stopping IV's in May....and she agreed to our break...sooooo life has felt almost normal again after 3 years and it has been wonderful...thus life has kept us so busy that I haven't done much to tell others about Lyme...

As I promised a month ago...I have TWO new LYME DISEASE shirt designs. These have a little girly flare to them and are meant to CELEBRATE the FIGHTERS and SURVIVORS in your life. You can click on the images to go directly to our CAFE PRESS store. Any sales made directly thru our store earns us an average of $6 bucks while sales from the generic marketplace only gives us $1. If you like these designs and want to buy a shirt you can purchase them from http://www.cafepress.com/lymiesUnite

May is Lyme Disease Awareness Month!

I am working on some new Lyme Disease T-shirt designs and will have them posted for you to view. Because May is Lyme disease awareness month, it gives us Lymies the perfect opportunity to talk about our struggle with this horrible disease. I am also working on a line of shirts that you can customize. New designs coming soon!

Custom Designed Blog Headers

I recently made a new header for Sharon and she graciously donated to Scott's Lyme Disease treatment fund....and that got me thinking...I could make some extra money designing blog headers in exchange for donations to our treatment fund! I have a BFA in Visual Communications with an emphasis in Graphic Design with 10 years of experience...and recently laid off... That has made it a little more difficult to buy the medication that Scott needs...and since designing is sort of like my therapy...I would like to help you update your blog in exchange for any monetary donation you can make. I have done some blog makeovers in the past and am open to anything you might need. I like to work with photographs but can create a scrapbook look as well. Email me HERE to let me know what you want.

Here are some recent samples:

Lyme Disease & Disability in Kansas

We did it! We FINALLY got approved for disability! It took almost exactly THREE YEARS to get approved and will take another 6-8 weeks before we get any money but HALLELUJAH we finally got disability benefits!!!

So, in our fight for disability our time line looks like this...

• January 2006- Scott is no longer able to work.

• March 2006- Scott was diagnosed with Lyme Disease instead of MS

• March 2007- We filed for disability.

• July 2007- Hired a disability rep.

• July 2007- Off The Record request thru ODAR.

• September 2007- 2nd Off The Record request thru ODAR.

• October 2007- Found a local LD doctor.

• December 2007- Started 2 a day IV treatments.

• June(ish) 2008- 3rd Off The Record request thru ODAR.

• July 2008- Got our KS rep involved in our disability case.

• October 2008- Fired worthless disability rep and hired a new one from KC.

• December 2008- Scott's 1 year anniversary at the IV clinic

• May 2009- We received a letter from SS saying we finally had a hearing for July 9th.

• July 2009- 1st disability hearing. The judge decided she needed more info. on LD so she set up another hearing for August. 19th.

• August 2009- 2nd disability hearing with a medical expert and a vocational expert. We are told that we will have a decision within 6-8 weeks.

• October 2009- We get a letter saying another hearing has been set and will be the day before Thanksgiving. The next week we got a call from our lawyer saying the judge had called her and said we didn't need another hearing because she had made her decision. We are told it would take 4 weeks to get the decision.

• November 2009- We called our lawyer and were told that our decision had to be sent to a Decision Writer who would write up the judge's decision and it should be sent any day.

• December 2009- We called our lawyer again, right before Christmas and they in turn called ODAR. ODAR said that they would try and mail our decision before Christmas...

• January 5, 2010- Our letter was started.....

• January 14, 2010- Our letter arrived in the mail and Scott was too nervous to open the letter so he had me do it. From this point we had been waiting for this decision for 2 months shy of 3 years but it has been 4 years since he was able to work. The letter is 16 pages long and discusses everything....but the most important part is that the judge gave us a partially favorable decision. It is partially favorable because instead of back dating the disability to the date we filed, she made it retroactive to Oct. of 2007 when we had more lab tests and evidence of the illness.

That brings us to today, Jan. 28th. We called the SS office the week we got our letter and were told that it will take 6-8 weeks for the decision to be entered and before we would get our first monthly check...so all in all it WILL BE 3 full years! HOLY COW! No wonder families end up losing everything during the process! Kansas is one of the worst states when it comes to pushing along disability cases and the average backlog is 15,000! It took 5 months for our decision to be written up, submitted and sent to us. THAT IS BEYOND RIDICULOUS!!! We have also heard that it will take about 6 months for our backpay to be released so we are anxiously awaiting that check...where we can finally pay off the debt we have been unable to pay off for the past 3 years.

Now that we have finally been approved for disability, I am considering adding more posts about Scott to our family blog. He feels vindicated and justified with his new title and knows it is one step closer to getting back to zero. He no longer needs to defend his illness to those who don't believe him because the State of Kansas has agreed with him and approved his benefits. He no longer feels the need to prove to them that yes, even with good moments, he is still disabled. To celebrate this GIGANTIC victory, we made him a red velvet cake with an apricot sour cream frosting. The boys lit the sparkler candles and we sang, "Happy Disability To You, Happy Disability To You, Happy Disability Dear Daddy, Happy Disability To You!" It was a sweet little moment in a long battle for Health, Disability and Credibility...