My Journal

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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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The Darkness : (from left) Dan Hawkins, Justin Hawkins, Rufus Taylor and Frankie Poullain

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

1442982481

 Hey Everyone!


Just an update to let you all know how I am doing sans pain meds.  I never thought it would be possible to recapture myself, to once again recognize the outgoing and fun-loving girl I was prior to LPHS.  However, I am rediscovering that person and am so grateful to have the chance to reacquaint myself with that aspect I thought was lost.  I am still dealing with my kidney pain and am also currently battling my first flare/crisis since stopping the meds.  It is interesting how the crises have evolved over time.  This current flare mirrors those I had at the beginning of my journey.  I believe that the meds played a role in altering the frequency and characteristics of the flares, possibly making them worse.  I am just trying to take things as they come and deal with them the best way I can.  Overall, I truly just feel grateful to, in a way, have a second chance at life.  Thank you all for your thoughts, prayers and amazing support.  I love you all more than you will ever know.


Much Love,

Ali

1438129774

 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!

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Created by Ali Baldridge