As I have stated on the Home page, the title of this website, "The Spaces In Between", represents how I live my life.  Those with a debilitating chronic illness like LPHS must take full advantage of the days when their pain and symptoms are somewhat lessened.  We learn that in order for our lives to be our own, we must make bargains with ourselves.  For instance, I know that if I choose to go to a concert or hang out with friends, I will pay for it in the days that follow with increased pain, nausea, etc.  I know that I must pay the piper, so to speak, in order to enjoy my life as much as possible.

     It can be easy, especially in the beginning, to feel sorry for ourselves and mourn the life we had before our illness began.  I certainly never expected or planned on becoming disabled at the age of 29.  I worked in the health insurance industry, assisting customers and vendors on the phone for 8 hours every day.  It certainly wasn't my dream job, but it paid the bills.  I have always been a creative person and enjoyed painting, drawing, photography, acting, singing, etc.  However, being a practical person, I knew that I likely would not be able to do those things professionally.

     After my diagnosis and coming to the realization that I would no longer be able to work, I felt a bit lost.  Most days my pain level is between 6 and 7 on a scale of 1-10, with 10 being the worst.  I began working on artwork again and found that it gave me a sense of accomplishment and pride.  I decided that I would treat my artwork and creative endeavors as my job.  Instead of identifying myself as "Disabled and Unemployed", I identify myself as a "Freelance Artist".  I took a really crappy situation and turned it into an opportunity to do what I truly love.  It is all about perspective.

     It can also be easy to shut ourselves away and become hermits.  However, I try to push myself to get out and socialize.  I want to fill my life with amazing experiences and amazing people.  I love music and have always enjoyed going to concerts.  I try to go to as many as I am able.  Those fun times help me to get through the hard times.  When I am in the hospital, I think about those concerts and nights out.  Re-living those good times puts a smile on my face and helps me to soldier on.  I have been lucky enough to meet some of my favorite bands and become friends with the musicians in those bands.  I have also made many good friends who are a part of those music communities, people who are fellow fans that share the same musical taste.

     So my advice is this:  Fill your life with the things and people you love.  Do those things as often as you are able.  The life of an LPHS patient is not an easy one and we deserve to get as much enjoyment out of our lives as possible.  It may sound odd, but so many wonderful things have happened to me because my life took a turn I never expected.  Despite dealing with some of the worst pain the human body can experience, being hospitalized every two months for 1-2 weeks at a time and not being able to do many of the physical exercises and tasks I once enjoyed, I wouldn't change anything.  I have learned many lessons and gained wisdom that I would not have otherwise.  I believe that everything happens for a reason - even the really crappy things have silver linings.   Live for your spaces.  Xx

 Hey Everyone!

I wanted to share something with all of you that absolutely made my day.  I received a message from a fellow kidney patient who was recently diagnosed with LPHS.  He told me that his nephrologist at The Mayo Clinic in Rochester, Minnesota recommended to him my website.  I am flattered and deeply humbled that a doctor at Mayo is sharing my page with his patients.  

When I was first diagnosed, I felt the need to do something since there was no treatment, cure, or course of action I could take with my illness.  This webpage began as a way for me to come to terms with my illness, a way to become an advocate for my disease.  I didn't know if anyone would ever read the words I was writing, or if I was essentially casting them out into the infinite void of the internet.  The ultimate dream and goal was that I would be able to help other kidney patients by way of education and the comfort of knowing they were not alone.  I feel so proud to know that this page is helping others.  

I have goals to expand this website to add more information and resources to better aid fellow patients.  I appreciate all of your messages, thank you for reaching out and sharing your stories with me.  I love hearing from you, so please feel free to drop me a line on the Contact page.

Much love,

Ali xx

 Hey Everyone!

     It has been a while since I have posted, but quite a bit has been going on lately.  In April, my mom was poking around on the internet and came across an article that immediately caught her attention.  It was a story about a potential treatment for LPHS, which as most of you know is an incredibly big deal.  She called me on the phone in tears and told me about what she had found.  I was in complete shock to say the very least.  Up until now, the only options available to those of us with LPHS have been the quite frankly barbaric surgical procedures of autotransplantation and renal denervation and the symptomatic treatment with narcotics.  I was touched and encouraged that there are doctors out there who truly care and are actively trying to help those of us afflicted by this disease.  Here is the article:

Loin pain hematuria syndrome, or LPHS, is a debilitating condition that affects primarily women, characterized by recurrent loin and kidney pain and blood in the urine.

Now, a new procedure developed by doctors in the Cypress Health Region and Regina Qu’Appelle Region is showing promising results and may lead to a national study.

Dr. Francisco Garcia, co-investigator on the team and local urologist, says the previous treatment involved a highly invasive auto-transplantation of the kidneys. Using a technique that was first used to try and treat high blood pressure in a study with Dr. B. Prasad and Dr. K. Goyal in Regina, they can apply energy to destroy the nerves causing the kidney pain through a small incision.

"Basically, they're in and out on the same day. Our early reports following six months of pain relief show that of the people who were on long-term narcotics for years, two of them are off everything - they aren't on any medications, at all. And the other two have more than 75 per cent increase in pain relief, and they're pretty much off everything except the occasional Advil and Tylenol," he said.

Two women for the Swift Current, one from Estevan and another from Moose Jaw are involved in the study.

"Even though, we're a smaller study, we're contributing to this and we're also part of this study getting off the ground. I think the next step is going to turn into a national study, where we'll probably be recruiting people from around the country, so we can get the numbers and have a stronger study."

Dr. Garcia says 80-90 per cent of cases of LPHS, occur in women. However, men are known to be affected by the disease in much smaller numbers.

     I honestly never thought I would see a viable treatment or cure in my lifetime due to the rarity of this illness.  While this procedure is still in its infancy, it gives great hope where before there was little to none.  We have been in contact with the doctors and nurses in charge of this study, asking many questions and trying to get all of the information we can.  The doctors are willing to take me as a patient, but there is one rather large obstacle.  The study is being conducted in Canada and my insurance will not cover medical services out of the country.  My family and I would be responsible for 100% of the charges associated with the surgery as well airfare, hotel, etc.  It will cost, in total, approximately $20,000 in US Dollars.  We will need to raise this money before we continue making any other plans.  My mother has set up a crowdfunding page on Youcaring.com.  Here is the link to the fundraiser.  I will also add a link on my Helpful Links page.  I would be humbled and most grateful for any help at all.  I realize it may take quite a while to come up with the money, but I am thrilled to have a chance at this potentially life-changing opportunity.

Much love to all of you!

Ali xx

 Hi All!

I hope everyone had a wonderful Christmas!  As it turns out, I am making resolutions ahead of the New Year.  I have just begun a journey into vegetarianism.  I initially decided to try eating vegetarian to see if it would help the symptoms of my kidney disease.  I also wanted to try it because of my love and concern for animals.  I started slowly, not totally giving up meat all at once.  In doing this, I discovered that when I did eat meat (even if it wasn't very much at all) I had severe kidney pain afterward.  This did not happen when I did not eat meat.  I plan to discuss this with my doctor on my next appointment and have her check my kidney function.  I suspect that it may coincide with my LPHS and that my body may no longer be able to process meat.  Instead of getting angry or frustrated, I am choosing to simply look at this as a new adventure and hopefully, a healthier way of life.

Much love to all of you!

Ali

Welcome to The Darkness...

 I have been a fan of the rock band Queen since I was in college.  I absolutely adore them, they are one of my favorite bands.  I recently re-ignited my passion for the band thanks to some weekly Beatles and Queen rock trivia with a friend.  In my quest to find challenging questions, I learned a lot about them that I didn't know.  I listened to all of my favorite tracks and found new favorites as well.  

Through my research, I discovered that Roger Taylor's son, Rufus, was also a drummer and playing with a band called The Darkness.  I was curious, so I decided to check them out.  I listened to songs from their latest album, 'Last of Our Kind', and I was completely hooked.  All of the members of the band are phenomenal.  Frontman Justin Hawkins has an incredible vocal range as well as a stage presence reminiscent of Freddie Mercury or Mick Jagger.  Justin's brother, Dan Hawkins, is the lead guitarist and can bust out some impressive riffs in addition to his technical talents in producing.  Frankie Poullain not only rocks the bass and adds a cool, funky element through his demeanor and sense of style, but he also contributes a fantastic vocal on the last track of the album called 'Conquerors'.  Last but not least, Rufus Taylor is an incredible drummer who has clearly inherited serious drumming ability from his dad.  He certainly has no need to trade on his name as his talent speaks for itself.  He has an exuberant, hard-hitting style that makes him so much fun to watch.  The combination of these four guys is really something quite special.  Please check out their website, thedarkness.co.uk.  Their music is available to listen on Spotify and for purchase on iTunes.

*The album 'Last of Our Kind' was released on June 1, 2015.  The previous drummer for The Darkness, Emily Dolan Davies, had already recorded the tracks for the album when she departed the group in May.  She was replaced by Rufus Taylor shortly afterward.  Rufus can be seen playing with the guys on their 'Blast of Our Kind' tour.*

Rock on guys!

Ali

 New Beginnings

Hey All,

I made an anouncement to my friends on Facebook several days ago about some changes I am making in my life.  This past Friday I had my most recent doctor's appointment.  The doctors are wanting me to go into a program where they would use a medication called Suboxone in order to transition me to another medication called buprenorphine.  They admittedly knew nothing about either medication (which inspired absolutely ZERO confidence in me).  They told me multiple times that the medication I have been on is very strong and that I could die.  After the appointment and for the rest of the day, I kept having the feeling that this proposed treatment was not the right thing for me to do.  I am convinced that it was God telling me not to go through with it.  I made the decision that I am not doing it.  I immediately ceased taking my as-needed pain medication and I began tapering myself off of the other pain medication as well.  I know that it will not be easy, but I am strong.  I am just tired of this roller coaster ride, and this is where I get off.  

Today marks Day 4 of my new beginning and I am doing pretty well.  I am already starting to feel more like myself than I have in years.

I can't even tell you how excited I am about the future.  It feels like I have been dormant for a long time and I am just waking up.  As a kind of disclaimer, I will say that if you are considering a similar change to do so with the approval of your doctor.  Your prayers, positive vibes and good karma are so appreciated!

Also, I have been listening to an album I just discovered called "Conscious Revolution" by Cipes and the People.  It has a pop/reggae vibe and I absolutely love it!  It has been the perfect score to accompany my fresh start.  The lead singer, Greg Cipes, is a well-known voice talent, actor and surfer.  It is perfect for summer (or anytime, really) and infused with positivity and love.  I would encourage you to check it out on iTunes and to also check out his web page, gregcipes.com.  Much love, Greg, much love!

 Hey guys!  

I am putting on my Sherlock Holmes hat, digging out my magnifying glass and setting out to get the 4-1-1 on the search for the tomb of Cleopatra.  I am doing research for my current art piece (yes, you heard it here first!  My next project is none other than the beguiling Queen of Egypt herself.).  As with all projects I do that are based on historical figures, I conduct research in order to learn more about the person and to gain some perspective on their life.  I found several articles from 2009 that reported on research and excavation being conducted at a place called TapOsiris Magna, near Alexandria, Egypt.  Dr. Zahi Hawass was leading a team of archaeologists and experts in the search for the resting place of Cleopatra and her star-crossed lover, Marc Antony.  Dr. Hawass had hope that their tombs would be found in some of the deeper chambers at the site.  The most current articles I found were dated 2011.  As those who know me will tell you, I am absolutely fearless when it comes to contacting anyone.  It doesn't matter whether they are celebrities, people in power, or individuals at the top of their field.  At the end of the day, they are all just people.  If you are respectful, most likely they will be too.  Anyway, I proceeded to contact one of the people mentioned in the articles from 2009.  Dr. Roger Vickers, who is an expert in Geophysics, conducted a geophysical survey of TapOsiris in order to get a clearer picture of what may lie underground.  The survey revealed several underground chambers, in which Dr. Hawass hoped he may find the tombs of Cleopatra and Antony.  I asked Dr. Vickers if there had been any developments since 2011.  He said that he did not have any information as to the current status of the project, but suggested I contact some of his colleagues.  I have emailed Dr. Hawass to see if there is any new information on the search.  If I am able to learn more, I will post the info here.  Take care all!

Your faithful intrepid reporter,

Ali

*Update* - I have been continuing my research and have learned that the archaeologist at the forefront of this project is Dr. Kathleen Martinez.  She was the one responsible for the expedition coming to fruition.  It was her idea to look for the tomb of Cleopatra in a temple dedicated to the Egyptian goddess Isis.  The reason for this is that Cleopatra believed she was the incarnation of Isis and that Marc Antony was the incarnation of the god Osiris.  Dr. Martinez is truly an amazing woman and I believe that she is making history in the field of Archaeology.  I have been talking further with Dr. Vickers, who has been extremely kind and helpful.  When I find out more, I'll let you guys know.