Health


My Story
It begins back on July 02 2010- we went to a Canada day party ( July 01), I was hanging out with some awesome kids playing on the trampoline etc, we had so much fun… July 02, Brooke asked me to take her shopping, of course, I said yes, just as I walked in the doors to the mall,  I got a sharp yet weird pain on the right side of my chest, I thought it was just a little something and nothing to worry about, I walked by the pharmacy and the pharmacist there is a friend of ours and he called out to me and waved me to come in, he took one look at me and asked me if I was okay, I said I have a little weird pain in my chest, he said I looked horrible and I need to head to the Emergency
I called my hubby and he came to get me, while I was registering he went to drop Brooke at her friend’s house in case I would be there a while… the doctor took me right in, I went quickly through triage and they started blood work etc, all my vitals were high, then something showed in my blood… the Dr first said it looks like leukemia… my life flashed before my eyes, I thought it was the end of me… I cried out to God and begged him to take this burden off my shoulders, what did I do to deserve this diagnosis.




They admitted me and wanted to run more tests, for which we were thankful.
Thankfully that next morning I was told it was not leukemia, it was a cyst growing on my chest cavity and it would need to be drained… they kept me on painkillers and oxygen because it was getting hard to breathe because it was so big and on my lung cavity, it was scary…
They made plans to drain it and I could not go to sleep because it was too risky, by this time my mom was with me for a while to help out, so thankful that I have a mom who is able and willing to come and take care of me.
I remember laying in the operating room, listening to everything they were saying, I had to remain completely still one wrong move and my lung was punctured, and the song that was going over and over in my head was.. Peace, Peace Wonderful Peace coming down from the father above, sweep over my spirit forever I pray In fathomless billows of love, I had so much so much peace come into that room.. then the next day they had discharged me and told me I would be okay..
3 days later Guess what…. I am back in there and they decided to do lung surgery to remove it.
My doctor wasn’t familiar with doing this type of surgery but we decided to give it a go…
My surgery was scheduled for October 6th, 12 days before my 27th birthday.. my family were here along with family who was like parents for me, the surgery was going to be 12 hours as long as everything went ok.. before I went to the operating room my family all prayed, it was so peaceful. It is a picture that I will never loose from my memory- my Dad and the guy who was like a second dad were at my head- my mom and my other mom was at my side,  before praying I was terrified, I never knew if I would ever hug my baby or hubby ever again, when they prayed, I felt carried by angels-  I knew then that I this wouldn’t be my last chance to tell  my family I love them. I told them to not worry I would see them in 12 hours, and peace that came over me was nothing like I have ever felt.

I came thru the surgery fine, I convinced my doctor to let me go home one day before my birthday, she said no but she did let me go on my birthday, I went home thinking I was going to take the next year stay home, rest, get better- lung surgery is very hard to recover from and I also had 3 broken ribs because they had to break them to get at the cyst…
5 days later is when something just wasn’t right…
October 18  is when I first started having pain like a bladder infection, it kinda made sense to have some sort of infection- just after having a catheter for 7 days so I would buy over the counter medications to help, it would help for a bit then it would flare up again, there was no indication when it was going to strike me…
Numerous timesI went to the ER and complained of a pain in my bladder area, numerous times they told me its all in my head…. it would make me feel like I was crazy and not sure what to do, I would end up in pain again in a few days and go thru the same things over and over.
I was starting to believe that I was going crazy and there was nothing wrong with me, UNTIL finally a doctor in the Emergency asked about Interstitial Cystitis and really thought I had this disease.. so we started with running tests, all the signs added up, the pain was just like described, that's when he suggested I go to see a colleague of his..Dr. Strand, so I had seen Dr. Strand previously to get an IUD, this appointment was about 6 months earlier then this issue started.
Went to see Dr Strand, he wanted to do a exploratory surgery to see if he could see anything that was causing this pain, he planned to have me in the ER and go from there.
Day of surgery arrived and I arrived at the hospital, was ready to get this over with and to find out where my pain was coming from. Hubby waited with me, I don't remember anything about going in the ER etc, and when i came out I was out of it, I can vaguely remember being wheeled to the car and home to rest..

Dr Strand did tell me that i had little pin holes in my bladder and that was causing my pain, he prescribed medications and sent me home, telling me to come back in 3 months… Thanks… not really helpful but anyway


I went to my family doctor a few days later and he had my results, neither of us were happy with Dr. Strand, just putting me on medication that we didn't know would work or what the next steps for me would be.
Both myself and my family doctor ( who was amazing) decided I needed a second opinion…
made sense to me and so we went on the look for one who I would like to talk to about this.
This is when I found an angel of a doctor( she was so helpful, she listened, she gave advice and helped everywhere she could.


Dr Basjack was her name and she was a lifesaver for myself and my husband.
She first and foremost listened to me tell my story, how I felt etc…
she then confirmed it was Interstitial Cystitis ( Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) — also called painful bladder syndrome — is a chronic condition in which you experience bladder pressure, bladder pain and sometimes pelvic pain, ranging from mild discomfort to severe pain., and my journey began….


First thing she wanted to do was to stretch my bladder- that hurt and I wasn't able to it finish. It was horrible pain and afterward there was blood etc, then she wanted to do another test, it was almost like an allergy test- this one didn't hurt as much and we manage to finish this one, there was a catheter in place etc, I don't remember much about it.
She then proceeded to give me a meal plan to follow very closely.. (Interstitial Cystitis, can be controlled mainly by your diet)within the meal plan I had to cut out a lot of foods, foods that I love so much like:


Salsa
Oranges - anything Orange is a major trigger for me
Orange juice
all fruit except blueberries.
anything tomato based
nothing citrus or with acid
this cuts out a lot of things
caffeine
but I was willing to try this instead of being on a lot of medication.


It was very hard to just not eat any of the above, I started reading labels and being very careful, but it didn't matter how careful i was, the flare-ups were still happening. I was at the point where I was scared every day that i could have another flare up and if this happened I would have more pain then i could physically bear, there were times when I was having a flare up that my body would shake and shiver like cold chills, then my fever would start, and I would feel very very "off", nurses told me my blood pressure would be up by then as well.


This is when the journey of finding the correct dosage of medication began- wow, quite the journey it was… just when you think you have the right amount, flare ups begin again and again.
I was tried on different types of medication, such as :


Elmiron- 4 per day
Elavil- 2 per day
Tramacet- this was a life saver in the beginning
Hydroxyzine- 1 per day


It was always a hit or miss with the medications because of the pain that was worst each time it happened.
My poor doctor i think she was tired of seeing a phone MSG from me, yet she always called back and most times got me in to see her the next day.
Finally, I was having some relief with the dosage.
I was taking all the above and was doing well for several months…


Brings me up to July when we moved to a new province and I had no family doctor here-
my flare ups kept getting worst and worst, there was no relief and there was no one who really knew how to treat me, I called my doctor back home and there was nothing she could do because she can't see me and don't want to change any medications now- which makes sense…but it is so hard to deal with this.


Many trips to the ER and it would take more and more to have the pain gone, like in the past few weeks, it took 6 dosages of pain medication {including Demerol, toradol and some other type that i don't know what it is because at this point, the pain was very bad…}
They also did a ultrasound the last time i was there and it showed up that i have a cyst on my ovary as well, thanks body, i didn't need this


The Emergency room arranged for me to go see a urologist- she wanted to start me on bladder instillations- I would have to get 52 treatments thru a catheter, the first couple was uncomfortable because I was so inflamed, after the treatments I would be sick and extremely tired, the medication that was given to me did not help me at all, but I carried on for 52 treatments… a long year of being sick every week from the treatment.


One of my recent trips to the Emergency room, the nurse that triaged me also has IC, she recommended to my doctor for her to prescribe Pyridium, the problem was it was only sold in the USA, so I had to find a way to get it across the border, I could not take a Canadian prescription down there as my doctor wasn’t licensed in the US, i called several pharmacies and finally I found one that would compound it for me, we decided to go ahead and get them to make it and pay the cost because my insurance would not cover it.


Fast forward to now 2016 the pain is still there, I still have flare ups, I will admit though after 4 years and finally getting peridium, I feel some relief, the pain isn't gone but I feel a little better.  Kim prayed for me one night after the radio show and it was not a instant miracle, it is a healing and it is getting better, I am anxiously awaiting until I am pain free and I know God can do that.






3 comments

  1. Such a tough life style change. so sorry you have to go through all of this

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  2. *hugs*
    I can relate on so many levels, the trips to the ER just trying to get the pain to go away, it's one hell of a roller coaster ride. I too was told I had IC, but after a few specialists, they told me I did not. Chronic pain is awful, something no one should have to go through. From the bottom of my heart, I know how you feel, and I truly, truly wish that you find some answers soon. If you EVER need anyone to talk to who can relate, feel free to drop me a line, hun. Feel better soon <3 <3

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  3. I never heard of IC. What does it stand for? Glad you don't have it though.

    ReplyDelete

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