My chronic illness.... (PART 1)

Posted by samantha covington on

"But... You don't look sick"
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I know many people want deets on what exactly is wrong with me....  I, from the outside, look like a healthy 34 year old.  Sometimes its hard for people to really understand the daily problems I have.  See, some chronic illnesses don't look like cancer.  Some illnesses you don't even know are there from the outside...  Which is both a blessing and curse in one...

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Many, MANY women die from what I suffer with every.single.day.  In fact, last month a 34 year old died from a UTI.  It happens all the time.  I am involved in many online support groups of other women.  It has literally saved my life.  I mean when I say that.  If I had not found that group of women and some men... I could very likely be dead right now.  High probability.  I was deathly ill, I was desperate for help, for someone to listen and understand.  I have found that in my groups.  

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See, people often assume a UTI is nothing.  Its a "common" illness in women.  In fact, more than 3 million cases are diagnosed in a year.  Therefore, its considered a "very common" illness.  If you have ever had a Urinary Tract Infection you know first hand how completely miserable they are.  You miss work because of them, because of the pain and urgency.  They are terrible!!!!!  Please, please, please DONT EVER SAY ITS JUST A UTI.  IT KILLS.  ITS DEADLY.  ITS NOT COMMON.  I ALMOST DIED FROM A UTI THE SUMMER OF 2018.  THEY ARE A VERY SERIOUS ILLNESS.

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Here is my story...

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My childhood and teen years I never really remember getting a "UTI".  In fact, the first one I recall is after I had my first baby.  In early 2013, I remember having back pain and knowing something was wrong.  I went to the doctor and I had a UTI.  They gave me some antibiotics and I went on my way.  They never retested me, just gave me a course of meds and that was it.  It cleared my symptoms and life was good.

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Inserting this here---  I know my body.  I know when its off, I know when something is wrong very early.  In fact.... I knew I was pregnant the next day after the deed had been done... seriously, its totally true.  I'm in sink with my body and its a good thing for all that has went on with me..

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My second kiddo was born in the summer of 2014.  Everything went great but, again, a few months after delivery I got another UTI.  Same thing...  I was given meds and went on my way.  No rechecks.  

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My third kiddo came very soon after my 2nd.  We actually found out on my 2nds, 1st Birthday that we were pregnant again.  My body didn't like that.  In fact, it was pissed.  My 2nd doctor appointment I had a UTI. (Group B Strep) I had no symptoms but.... since that bacteria is dangerous for both me and baby I had to be treated.  I was on a course of antibiotics every month for 7 months.  I always tested positive.  Since it was that bacteria, I also need IV antibiotics during labor.  I want to say I was also on a course after labor as well but can't confirm or deny that.  It messed my body up BIG time!!!!

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After I had my 3rd, my OB wanted me to start seeing a urologist to help me figure out what was going on.  My "dipsticks" (the dips they do in office to first detect a UTI were ALWAYS perfect.  Never blood, protein it looked perfect!!)  This is very important to note from here on out.  The urologist I saw did all the "normal" tests, a surgical scope of my bladder, a bladder empty test, bloodwork, Ct scan, catheters, you name it.. Everything came back fine.  They couldn't find any issues.  My culture and dipstick were negative but... I was having mild symptoms.  Since nothing was coming back as a flag...  they dismissed me and basically said I'm healthy and there was nothing to worry about.

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I was told after that pregnancy (#3) that my body couldn't handle another pregnancy and it would be in my best interest, to not get pregnant again.  Welp... God had other plans.  We ended up getting pregnant with our 4th when our 3rd was only 8 months old.

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Honestly, it wasn't a welcomed pregnancy.  I was scared, I was mad.  I don't really recall ever being excited and happy.  What if something happens to me or the baby?  Even though I had all these tests and procedures done and everything was presumed "normal" I was still on pins and needles the entire 9 months.  I lived in complete fear and not faith.

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In the end... the pregnancy went really smooth.  I only recall one confirmed UTI (Group B strep) and needed a 14 day course of meds.  I also had to get IV antibiotics during labor to protect me and the baby.  All went really smooth and she is the biggest blessing to us... BUT... WE ARE DONE!!!!

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All was going great, I felt good, life seemed normal for a little while.  All of a sudden, when my 4th turned about 15 months, everything changed.  I got so so so soooo sick..  I had a UTI.  I had an RX at the Pharmacy so I got it filled without ever seeing a doctor.  Since my infections were always Group B strep, I had lots of refills of Macrobid in case another infection came on.  I took the 10 day course and had NO improvements.  I called a new urologist one that would hopefully take me a little more seriously than the last.... 

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This urologist could see my history (it was the same facility just a different urologist)  He did a catheter bladder sample.  He didn't culture it... he sent it to MicrogenDX.  This is an intensive test sent in to detect DNA sequencing for accurate microbial identification (copied this straight from the website, lol)  This test detected it was an E. Coli infection.  The "funny" thing about it is, E. Coli is the most common cause of UTIs in both men and women.  The problem... it is the bacteria that can cause the most harm and become the most resistant to antibiotics.  I took the Macrobid, remember?  And.. it didn't touch the infection because the bacteria was resistant to it.... 

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By the time I got into see him, the Microgen test was done, and results were in,  a had a full blown Kidney infection.  My temp was 105 and I was so weak and sick. I couldn't walk up a stair, when I tell you I was sick, I mean I was sick, sick, sick.  I really thought I was going to die.  He finally called me and told me which antibiotic I needed for both the kidney and UTI, Bactrim.  That also saved my life.  2 pills in, I could tell it was working.  My fever was going down and my symptoms were getting better.  I felt better and better each day.

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Once I felt like I wasn't on deaths door step I ended up seeing him again and having a repeat of all of the tests done the year or so prior, CT scan, Scope, Bloodwork..  Again, nothing was found.  I demanded a repeat Microgen test as well and it ended up coming back with the E.coli STILL present, even after being on antibiotics for 2 weeks.  I felt SO defeated.  Not only did I feel defeated I started having symptoms again.  He called me in yet another round of Bactrim and I took it. 

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I made another appointment with him because I wanted to be re-tested AGAIN to be sure the bacteria was GONE for GOOD!   He ended up telling me that I am fine and no more testing needed to be done.  I didn't take that well.  I wanted a test done and he basically told me no.  I sought another opinion...  (So, we are on Urologist #3 now.......)

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I found a women Urologist who would hopefully take me more seriously.  She was willing to help a little more but I still wasn't 100% satisfied with her views.  Dr. Google I felt, knew more than they did.  I didn't back down with her.  I stood my ground and DEMANDED answers and for her to be open to the testing I wanted.  She submitted another Microgen test and not only did it have E. Coli it had THREE MORE BACTERIA!!!!!!!!!!!!!!!!!!!!!!!!  Might I add here, I am having active moderate symptoms.  

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After I took the 14 days course of Cipro (a BLACK LABEL ANTIBIOTIC) She repeated a the bladder scope and everything else I had done twice before.  Like usual, nothing was found.  After seeing her about 4 times, she was just like the other 2 and completely dismissed me and told me to come back in a year....  Only she said...  do not make an appointment for another year...  She, like the other 2 thought I was 100% CRAZY and basically stopped treating me....  Here I was feeling helpless yet again.......

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My support group became so so important to me around this time.  For many reasons, a good cry, for people to actually understand what I go through on a daily.  People who thought the LAST thing I was, was crazy.  They understood.  They guided me...  They guided me to people who would completely CHANGE MY LIFE!!!!

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This is where I will end Part 1.  Part 2 coming soon.  Thanks for reading friends.  If you have any questions let me know!!!  I am sharing this in hopes of helping other people who may be struggling with the same things.

 


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