My Journal

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Me with pink hair - a lifelong dream come true!

 LIVING "THE SPACES PHILOSOPHY"


     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

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Dan Hawkins, guitarist for the band The Darkness, and I.
Me and Frankie Poullain, bassist for the band The Darkness.
Me, my mom and Rufus Taylor, drummer for the band The Darkness and son of Roger Taylor (co-founder and drummer for the band Queen)..
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My friend and frontman for band Palaye Royale, Remington Leith, and I.
My mom with our friends of the band RavenEye. (L-R: Aaron Spiers, Adam Breeze, mom, Oli Brown)
Me and my friend Daniel Curcio, bassist for bands Palaye Royale and Atlas Genius.
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 Hi Everyone,


I am writing this from the hospital, in the middle of one of my flares.  I had the unfortunate luck of being stuck with a doctor who does not want to give me the medications I need and, in fact, questions if I truly have LPHS.  It is so very frustrating when you are feeling your absolute worst and you are forced to contend with ignorant doctors who think they know more than they really do.  I know that you all deal with this also, as I have heard similar stories from many fellow LPHS patients.  We are looked down upon and labeled "drug addicts" simply because we require narcotics to deal with the immense pain of our illness.  It is quite a lonely feeling when you are sequestered in a dark hospital room with no doctors or nurses who truly care or have an ounce of compassion.  It can be easy to feel defeated when the "medical professionals" have all the power and no desire to help you.  This is why education and awareness are so very crucial.  There will come a day when a diagnosis of LPHS is not questioned or looked down upon.  Truly, LPHS is in its' infancy in terms of being a recognized disease, especially when you remember that it was only discovered in the 1960's.  I imagine that when other illnesses were new, those patients had to endure the same admonishments and doubtful looks that we have come to know all too well.  It is not an easy life that we lead.  We must stay strong, support one another and continue our work to spread awareness.

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 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

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Dr. Francisco Garcia and his medical team.

 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



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 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

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 New Art Piece - Dan Hawkins of The Darkness

Hey Guys!

I am posting the progression slideshow of my newest piece, a portrait of Dan Hawkins of The Darkness.  This is the first in a series of four, one portrait for each member of the band.  For those not familiar with The Darkness, Dan is the lead guitarist and brother of frontman, Justin Hawkins.  In addition to his amazing guitar playing, he also mixed and produced the band's latest album, 'Last of Our Kind'. I hope you all enjoy the video.  I am looking forward to starting the second piece.


Much love to all of you!

Ali

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Created by Ali Baldridge