The Patient Struggle

The Patient Struggle

Medical patients of a chronic illness go through a larger battle than what meets the eye. It is more than time spent to see someone, money given, or even the action of explaining what all issues there are. Sometimes it is devastating to learn that the needed care will only go unattended.

Some people complain daily of debilitating symptoms such as pain, illness, or outright abnormality of the body which is left untreated or minimalized. Recently, I have had such a struggle. It began years ago when I had surgery for a kidney stone that was too big to pass through the urethra. I woke up with a stent reaching into my kidney to help aid passage of remnant stones safely out of my body. The doctor who removed it said, "Oh my! I am so sorry. This stent was defective. There was a hole in it during production, and you will experience an increase in UTIs for the rest of your life." I thought that was alarming. I will now tell you what is worse.

The Patient Struggle

I have had three surgeries for kidney stones in total. Those were just the ones that were too big ever to pass on their own. I would imagine that my kidneys have scar tissue and possibly other lifelong effects of the trauma. A few months ago I had all the symptoms of another UTI. I am waiting for my healthcare to start and go back to the doctor and get more medicine. I was given conditional approval April 11th for May 1st, but they can't find my name on their computer to pay my first premium, and I'm told to wait up to two weeks for that internal investigation. I did say more medicine. The doctor already gave me 3 (three) pills after an appointment that I paid out of pocket for (in addition to the collected bills from that office already). Those three pills took away the pain, but I am left with the fatigue and smell when going to the bathroom. I do hope it is no more than two weeks. Holding onto a UTI for this long cannot be healthy.

I send a shout out to all of the patients struggling to gain healthcare and treatment which are two very different things. I salute your perseverance throughout the fight and hope you know that you are not alone.

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I need a geneticist!!

I know Doctor Google can be very harmful for us and it is best to stay away from researching too much but I came across this article and it fit me so well that I can't help but wonder if I have type IV Ehlers Danlos Syndrome personally instead. My factor VIII was found to be low and borderline Von WIllebrand Disease was diagnosed. I have been having problems with pneumothorax as well. I am very nervous that my fundraiser wont take off and that I wouldn't be able to afford my child daycare and travel expenses to get myself properly checked out. I know I need to place my faith in the universe and believe that God has a plan no matter if I am comfortable with it or not. I could really use prayers today.

Check out the article that ruffled my feathers today here.

A special shout out and thank you to my supporters! You mean so much! You give me HOPE!

Insurance Troubles

We all have them from time to time. You know, those pesky insurance problems. I wasn't able to attend my appointment in Carmel. Now I wait. Last night I made this video for EDSFC instead after being called in the morning by my PCP office to cancel my trip. Take a look:

Ehlers Danlos Syndrome The Story of Pain