DC

Health-wise our trip to Virginia/DC could have been better timed for Noelle. She was fighting her endometriosis symptoms and for the first time in a year had to have assistance walking. We ended up purchasing her a pink walker for times when she needs to walk/stand for a long time.

But...we certainly did our best to see DC even with Noelle's limited energy:) First stop DC Cupcakes in Georgetown.

Beautiful, yummy and gluten-free!

Next stop the zoo! Then we went to the Holocaust museum and finally Legal Seafood. (I actually wanted to go to the Oceanaire based on memories from the last time we were in DC, but I messed up the name.)

Mayday

It is hard to sit back and let Lyme steal the active lives of those I love. It is hard for Noelle not to find a way to act. So she and I travelled to Arlington, Virginia to protest the IDSA (Infectious Diseases Society of America). There needs to be better education, research, testing, etc. for Lyme disease. Here are some pictures of our days protesting. Our protest actually closed their offices down. The first day they left at noon and the second day they worked from home. We did not get a lot of media coverage. Possibly because of the ongoing coverage in Baltimore that week.

This quilt represents those fighting lyme and those who have lost their battle with lyme. In the foreground they are tracing to make a chalk outline.

This truck circled the area where we were protesting. The police were very generous and even let us block traffic a couple times.

This whole thing read "IDSA Harms Lyme Patients". Noelle is holding the white sign at the end.

Thursday evening we held a candlelight vigil remembering those that have lost their lives to lyme. Honestly the list was scary long. One of the most recent casualties was a woman in her forties who took her own life. This speaker spoke out to those gathered asking that they reach out to others if they are considering suicide. Suicide and heart issues are two of the most common reasons for death in lyme patients. The chronic pain and neurological issues combine to make it difficult to press on. Each candle had the name of a lyme fighter that had lost their batttle.

Lady Lyme and the Lyme Avenger!!

http://lymediseasechallenge.org/

My favorite thing about the protest was educating people walking by about lyme disease. Many people stopped to accept information. We had personal letters from lymies telling their stories and Mayday pamphlets with lyme information. I think Noelle's favorite part was representing her many friends with lyme who were to sick to attend!

Unexpected Political Advocacy

April 1, 2015

Dear Senator

I am writing as a mom who has watched her almost 19 year old daughter suffer in daily pain for four and a half years. She suffers from chronic pain, due to Lyme disease, Endometriosis and Chronic Migraines. I have watched as she missed most of her Junior year and all of her Senior year, including prom and graduation ceremonies. For that same four and a half years I have watched as doctors prescribe heavy duty medications like oxycodone, hydrocodone and Tramadol. I have watched as Noelle has tried to avoid becoming dependent while trying to ease her pain.

I am writing to encourage you to wonder what you would want if this was your daughter, or your granddaughter. Would you want her to have the chance to try every possible treatment? I honestly don’t know if medical cannabis will change my daughter’s life. But it could. She struggles every day to do the things that others take for granted. She is a fighter and she fights through and does amazing things. But as a mom, I want her life to be easier. It shouldn’t be difficult for her to walk across campus due to leg pain.

Please vote to give my daughter, and many others like her, the chance to try every solution to their medical issues. Give them the right to access medical cannabis right here in Iowa. We love Iowa. We have no desire to move so that our daughter can get access to every option for her medical care.

Thank you for considering voting in favor of medical cannabis. As a life- long Republican I would prefer to continue voting based on other issues than this. If you have questions about our particular situation please feel free to call at ...

With high hopes,
Diane Larson


I have said over and over during this journey that you have no idea what you will do in a given circumstance. I just sent this letter to all of the Iowa Republican Senators. The Medical Cannabis Bill has passed the Iowa House and will now go to the Iowa Senate; at least if I have my information correct. I would love for Noelle to test this treatment for her pain. I feel that the side-effects and possibility of addiction are most likely better than what she currently takes for pain.

As we continue to try and deal with her pain, we had an appointment with our third pain doctor yesterday. I wrote about our first appointment in January of 2014 here, http://larsonquest.blogspot.com/2014/01/rough-week.html. It was not a good experience. Our second attempt was shut down. After reviewing Noelle's records the doctor did not even grant her an appointment. Yesterday, the doctor gave Noelle's pain a great deal of respect and is trying two new medications. We are praying this medications will eventually contribute to lessen Noelle's pain.

In another scheduled attempt at political advocacy, Noelle and I will be attending the Lyme Mayday Protest in Arlington, Virginia, at the end of the month! More on that later!

March is...

Endometriosis Awareness Month!

Noelle was diagnosed with Endometriosis last July. It is incredibly painful. Pray for advancements toward a cure, or at the very least, pain control! We are following up with a specialist in the Chicago area.

Surgery tommorrow

Noelle's gallbladder surgery and bladder scope are tommorrow morning at 7:00 a.m. Specific prayer requests:

1. For two days Sabrina has been home with strep throat, 103 degree temperature last night. Please pray that I do not carry the infection to Noelle and that Sabrina is feeling well enough to go to school tommorrow so that Scott can come up to the hospital.

2. For wisdom for the doctors and anesthesiologist!

3. Laproscopy rather than open surgery!

4. Quick recovery.

5. That if something needs to be discovered in the bladder that it would be.

6. Protection as Noelle is put under for the third time in seven months.

7. Protection from anxiety especially since this procedure is scaring Noelle for some reason.

8. Grace from Noelle's professors.

9. That removal of the gallbladder would actually improve Noelle's pain/stomach upset.

I think that's it. Never fun to have someone you love require surgery. We so appreciate your prayers!

Woohoo!

So amazing that Noelle completed 11 credits this semester so that she could graduate in 2014! Since she was unable to attend a Waterloo Schools ceremony, we held our own. Sue Flynn, (Scott's assistant, our friend and school board member), helped us to have a short ceremony. Noelle pranced to and from the podium. She said that she saw many tears but I had dry eyes. I was just so excited for her!

Noelle played recreational and competitive, indoor and outdoor soccer for many years until her health got in the way.

This display was all Noelle's idea. Her journey from patient to nursing student. She has been granted eary admission in to Allen nursing College. She will do two years at Hawkeye Community College. Then she will go to her reserved spot at Allen to continue on for her BSN.

The fancy pink mixer was a graduation gift from my parents. Noelle made gluten free Raspberry Cheesecake cupcakes for the open house. We also had Scratch cupcakes (her favorite before going gluten free) and yummy italian sodas. Uncle Curt and Uncle Mark were our bartenders.

It was a great day! And so deserved!

CONGRATULATIONS NOELLE!

Health Update

Noelle is taking it day to day healthwise. So much better than a year ago, but not as healthy as she would like to be. In November and December she had multiple ultrasounds and scopes. The endometriosis specialist recommended we check out urology and gastro-intestinal options for her pelvic pain. We did discover that Noelle's gallbladder is operating at only 4%. The big risk is that if it drops to non-functioning it is a big risk for infection. So she will have her gallbladder removed at the end of January. While she is sedated her ob/gyn will also scope her bladder. There is a possibility that she has painful bladder syndrome/interstitial cystitis.

Unfortunately, her botox treatments for migraines have continued to be denied by our insurance. We will be trying a second appeal. Please pray for favor. Noelle has big plans this summer. She will be travelling with Global Expeditions to South Africa and Zambia. So it is important that we get Noelle's symptoms as in control as possible before her
departure.

Chicago and Endo update

October 24th was supposed to be my big night...the CHER concert. BUT, she postponed:( Noelle and I had already scheduled an appointment with an endometriosis specialist in Chicago for that same day so we went ahead with our plans. We liked the doctor, which is a real answer to prayer. He did not have any immediate answers for Noelle's pain. Which leaves her petrified of her next cycle:( He is wondering if some of her pelvic pain is unrealated to endometriosis. So we have been referred to a urologist and a GI doctor. Noelle will have an ultrasound of her kidneys and bladder on Monday. Needless to say, she is very tired of the endless parade of doctors. We are praying for answers that lead to a reduction in pain!

While we were in Chicago we felt the need to eat great food, shop a "little", and have some fun! Noelle's favorites are Vera Bradley and LUSH! So she is stocked up with bath luxuries for awhile.

Sabrina's latest interest is Legos, so we had to go to the Lego store. This is Noelle and Lego Ironman!

Noelle's friend, Aubrey happened to be in Chicago for school that same weekend. The girls played soccer together for a number of years so we decided to go to a Chicago Fire game.

Pink Ribbon

Last year Noelle and I participated in the Pink Ribbon 5K. I think it may become a tradition! This year we did not take a wheelchair. In fact, Noelle has not used it since April. So we walked the whole thing:) Sabrina rode most of it especially since it was very cold! The blanket was necessary.

It is very frustrating that now, later in the day, Noelle is in tremendous pain. It is so difficult to accept. Things are much better than they were but still a far cry from "normal" for an 18 year old. On another health note, we have made an appoinment in Chicago with an endometriosis specialist. We are also waiting for our insurance to approve Botox for Noelle's daily migraines. A few years ago, just prior to her Lyme diagnosis, she had two Botox treatments and felt that they lessened her pain. We now have new insurance so we are waiting for approval.

September pics

I had minor finger surgery on the 24th to remove a cyst that keeps growing back. I still have the stitches actually. Everything went well as soon as I stopped taking the pain pills:/

Noelle and her friend, Aubrey, at the UNI homecoming. This was the day after Noelle had her wisdom teeth removed. Strong girl, as usual!

Every September we have a local fair called Cattle Congress. When I was younger it was actually 10 days, I believe. It is now just a long weekend. Friday is always Kids Day and all the public schools cancel. The schools pretend it is for "professional development". Sabrina was able to go with her class for a special Iowa State Extension program. But on the weekend the whole family went. Well, everyone but Jake:)

Cute pictures

Noelle watched Sabrina while we went golfing and out for dinner for our anniversary. They went to an outdoor movie in the park, "Brave". They are both so beautiful!

Back to school, and on their own!!

One by one the kids are heading back to school. The first one to move out was Noelle! On August 8th she moved to an apartment! So unbelievable! We are so proud of her. Technically due to her large amount of absences over the last two years especially, Noelle has one semester of high school left. She will begin Hawkeye Community College in January. She will be there for two years and then pursue her BSN at Allen Nursing School. Here are a few pictures of her apartment. She has two roommates that were assigned to her. They are doing well so far.

August 19th Teme headed back to school. He is in the 8th grade.

August 21st the big guy headed back to Ames. He has changed his major to Chemistry with a teaching certification, with the goal to teach high school Chemistry. I think this is a good fit. In fact, I have been encouraging him in this direction for awhile. I actually felt the need to ensure that he did not change because of my pestering. I would hate to be responsible for an unhappy choice. He assures me it was all his decision.

His room is TINY! And I have laughed at the difference getting a girl off to her own place for the first time versus a boy, especially Jake. So funny.

Sabrina will head to second grade tomorrow. I will definitely add photos later.

Endometriosis:(

Unfortunately the results of Noelle's laproscopy showed that she does indeed have Endometriosis. She does a great job of explaining her diagnosis on her blog.
http://myjourneythroughlymes.blogspot.com/

Please pray with us as we decide which treatment options to consider.

Surgery scheduled

We have scheduled Noelle's exploratory surgery for Tuesday. Please pray with us for her safety during the procedure.

More pain:(

I haven't updated on Noelle in a while. She is struggling with three major issues currently.

The most intense is pain associated with her period. Please pray for our decision making as we see the doctor today. It seems very possible that this is endometriosis. There have been links between Endometriosis and auto-immune diseases, like Lyme disease. The only way to verify this diagnosis is through laparoscopic surgery. During this procedure, if they find evidence of endometriosis an effort can be made to "clean it up". This procedure can help with the pain. Hard for me to believe that my daughter may have TWO different pain causing diseases that are difficult to control. Poor baby!

The second issue is weather fronts. We have had thunderstorm after thunderstorm. The changes in barometric pressure intensify Noelle's Lyme pain drastically. One of our biggest issues with her pain has always been finding pain relief. Nothing works. She allows herself to take an Oxycodone every three days at the most frequent. And even that, diminishes but does not take away her pain. Hopefully our weather will soon turn into a regular Iowa July, lots of sun.

Third remaining issue is with emotional struggles. There are situational responses and then there are days when she doesn't know where the crazy emotions are coming from. We will address this with her doctor today as well. I read an interesting article in Prevention magazine that talked about the impact of chronic inflammation on depression. This doctor suggests that using something like Celebrex along with an anti-depressant can yield better results. This idea is something I will be talking to the doctor about.

There are improvements since Arizona. Her leg pain is much improved. She has not used a wheelchair since sometime in Arizona. She has rarely had migraines since her treatment. Please pray with us for continued healing and answers to the above complications. As always, thank you so much for joining us in praying for Noelle's healing.

:)

After getting her hair "softened" by Noelle. She loves it! Though it is not as easy to comb as I had hoped. Getting it trimmed tomorrow and hoping that will help.

The girls did each other's makeup one day:)