DISEASE IC-NO ELSE ONE SEE’S

I cannot believe I am sharing such a personal part of my life.  An invisible chronic disease, he called IC.  I’d never hear of Imterstical Cystitis before 2012.  Now I have more friends than I can count who have the same illness.  In 2012 I was taken to the emergency room after 72 hours of no sleep.  Horrible bladder pain without an infection.  I suffered for many years until 2016.  I discovered a modern lab.
First it was called PathoGenius and now it is Microgendx.
Please, if any one in your family has IC, a sore that will not heal, a cough that never goes away or constant bowel problems test at Microgendx.com

Our Shasta, 1973

Wow!   What a project!  Excited, but expensive.  We started about the 20 th of July!

Life is odd, especially after being so sick.  I’ve started to appreciate things in a different perspective.  I am still struggling with fatigue.  Today was an extra good day.  But, as it is 2:50 am and I am not asleep.

In GA now there is a hint of Fall in the air.  Expecting rain before day light.  The pumpkin patch is in, picked a hand full of blue berries this evening.  Grapes have not done well.  But, our tomatoes are still coming in, so far we’ve managed to put around 21 quarts of tomato juice up for the winter,  we also had a wonderful diner of speggiti tonight.  With IC I have not  eaten any tomatoe products, so we shall see.

This week I have gotten several thank you note from ladies I have worked with about getting tested and following through with treatments.  It’s taken so much time. I would like to do a small book about my experience and possibly reach a larger population.  I have little idea about how to go about  task.  Any help,would be most appreciated.

Off to bed.

Interstical Cystitis Night Mare

Today is a new day.  A struggle, but new.  This afternoon after a two hour drive to Pain Management, oil change, and lunch I was reading ” Inspire”.  I noticed that on a bit over 10,000 IC peeps were on Inspire.  Now there are a lot of Facebook sites ran by administrators that usually suffer from IC.  But, if it’s a group of administrators and someone decides they do not like your post.  Off you go.  I was treated as such from IC sisters.  One admin had the notion that her way or your are off.  Her opinion was exercise and an extream diet will kill IC.

Luckly about the same time a lady ask me to come over to Inspire.  She had some information for me.  If not for her I’d still be suffering.  I still suffer from anxiety that the pain and suffer might return at anytime, or all the antibotics I took will some how cause weird side effects.  You have read all uproar about Antibotics, I feel sure.  Law suits now, tendon problems, muscle problems, etc.  Research this subject and decide for yourself.

It is a confusing world now.  It can lead you down some disruptive paths.  Or, it can cure you.  So, without proper guidance what is one supposed to do?  Dip a coin and hope for the best?  I’d hope not.  But, this silent disease feels this way.  Some support the natural road, some the diet, exercise, some, antibotics, and some are just suffer die to lack of health care in other countries or even in neighboring states.  Insurance is an issuer, money is an issuer and so is common sense.

I even understand it is so bad that some will attempt to squeeze antibotics information from other and buy from a veterinarian.  Sad.   But, I can see there point.  It makes for a miserable existence.  Especially when a husband, and children are involved.  Or, maybe you are a caregiver as I was.

My husband is very healthy.  He makes living a bit miserable for me by being high stressed and very annoyingly negative type personality.  He’s is not a good nurse.  I am not sure he is capable or just in denial.  Anyway my Father died the year I became ill,with IC and my Mother almost 3 years later.  We cared for my Father around 12’years.  Mom was an LPN and this helped.  But, Mom had her problems and we children had to step up to the plate.   One lived away.  One worked full time.  My brother and I did not word, due to injurys ironically at our work places.  By the time I became disable I’d worked in the Education for 21 years and held a Master’s degree.  Completed waist of time.  I recommend teacher to never suffer through a Masters program until they had tenure.  I was wrongly non-contracted after my 1 st year in public education.  Another story.

My PM doctor is such a nice guy.  He’s taking a trip out of the country for two weeks with his three boys.  So, he’s saw everyone and is gone.  He’s gotten involved in realistate so he can raise his 1 girl and three boys in a custom he desires.  I love to got with them and just be a tutor for the boys.  To travel such as he does I cannot imagine.  So, I graze off Google + and look at pictures of the most beautiful places.  Live vicariously through that, TV, and traveling healthy family members.  Dear Jesus this is depressing.  Which is not my cause for being here.  I am just trying to get across how horrible this can IC can become.

Note: remember I’ve had two boys natural labor.  The first 16 hours at 15, the second at  was 9 hours and epidural was given at 7 centimeters.  Ouch!

During my life I also injured my back and lost my career as a teacher.  This was a huge change to except.  Human spirit is to survive, get well and go on with life. Disability seemed a crazy notion after all my hard work.  Going to college non-traditionally.  Completing my career at a much older age.  But, I did it!  Only to be officially disabled in 2009.  All the time I’d put toward working with children, gone, income, gone, all gone,  I had to except I would not work full time again.

In 2001 I lifted a bag of dirt and twisted my back.  Sciatica sat in and L4 and L5 were blown.  I soon found myself not being able to shop, cook, remain active in any for or fashion.  So, surgery was after 9/11/01.  I wanted to go back to work and I did for a few years, but there was a lot of pain.  I worke until 2007.  Then the school I got hurt at closed.  My surgery had failed.  So, once again under the knife in 2008.  Healing takes around a year.  Since then it’s been pain management.  So, in 2009 my disability came through just in time for us not to loose our home.  My 401b had ran dry.  I made house payments.  A home to live in and call your own is so important.

Speaking of home, I believe I’ll lay down and get up again.  It just feels good on a day like today.  I now suffer from other problems, like IC, leaky bladder, and leaky bowels.  Oh, how fun.  Trying not to get an E. coli infection is difficult at times.  My stomach issues is a whole other issue.

To be continued…..

 

Professor Malone Lee, UK

Professor has hit the nail on the head with IC.  I live in the US.  But, to get rid of Interstical Cystis I’d travel on my last dime to work with him for a cure.  I do believe the theory that has been tossed around for sometime now has finally came to be on the cusp of fact.  Oh, only if this is almost 95% proven it would save 100,000s of suffers.  Some of these ladies are denied care.  Denied Pain Management,  commit sucide, lose husbands, go bankrupt just trying to get well. Then the real kicker is if it goes unchecked long enough we get to have our dried up, ulcerated bladder removed.  After that there can always be phantom pain.   The US has got to raise above the cloud and help us.  Not only help us, but help any of your own loved ones.  The nations Labs need equipment now.  Positivity now.  Testing that PathOGenius, Granger, and Fry Labs is an absolute must for the future of medicine and diagnoses of these miscropic infections, so called supper bugs.  Our normal labs are missing so much.  People are suffering and even dying needlessly.  Septic is where I was heading before PathOGenius found 6 different bacterial infections in my urine.  I had IC since 2012.  I continue to flare at times.  I have spent 1000s of dollars trying everything I could.

It is late, but I’ll continue my story soon.  Please read about Professor Malone Lee’s practice.   Let’s band together and get these Labs the equipment they need and the personnel to run these test.  These test can cure fungus feet, wound care, bed sores, upper respiratory, severed limbs infections, UTIs,Interstical Cystis, stool samples turound time is 24 to 48 hours.  C diff, just think.  Knowing you have that within 24 hrs could make all the difference.  Lower health care cost.  The cure saves 1000.00s of dollars.  Instead  of the bandaids over and over again.

To be continued…..

I must appreciate what Doc did for me, if not for a URO and his PA I would have suffer more and worse than I did.  Many IC friends cannot find help, a doctor for support, a doctor that even knows what IC is about.  A close friend on Imspire dropped off recently.  She has had horrible support and suffered beyond imagination.  We are at opposite ends of the spectrum

I made friends

Added insert, edit later.

 

I must admit I was already on Pain Management when I,was,diagnosed with IC. So, I was Amitripline from URO. 50 mg at night. This medication I broke in half. I thought it was this med causing my fatigue. My Pain Manag Doc added Zoloft in Dec of 2013, I,was really down and in so much pain. This med caused extream distinction for me. I’d sit and stare out my Kitchen window for hours each morning. I lost most of my ambition to care about anything much. Instills were added and prescribed for home catherization. By this time I lost 30 lbs, hollowed eyed and even more exhausted. Stomach was torn up. I missed my Sons wedding reception. Elmiron, Uribel were on board, Golden Harvest yeast, L-Proline, magnesium, vit C powdered. Non acidic vit C.

All this on top of my normal pain management was rather overwhelmimg to,say the least. So, Zoloft was stopped after I researched and found Zoloft Zombies. Added, Wes Cymbalta,,now at 60 ml. This works. Not as much anxiety, helps nerve pain as well. Which I suffer from Fibromyalgia pain on occasion.

I began to lie in my bed more and more. From the sofa to bed. ,occasionally I’d get a day break. No potassium, or acidic foods. Dehydration, migraines, just total useless person. By the time I took care of myself the day was well into 4 pm. Hubs comes home at 5 pm. Needless to say annoyed with me most evenings. I’d stopped cooking,,cleaning and even my hygiene was faltered. This was not me. Added to,side effects were, ” hot mouth syndrome”. It is now the opposit, to much saliva. ( who knows why?). Swallowing was a problem at times,,this was scary crap. My body began a process of muscle tone lose, no social life, no Grandchildren. …..

No, cooking for holidays, in other words my life pretty much stopped for 2012″until 2017. This is too many years.
DISEASE, IC A PAT ON THE SHOULDER, NOT CUREABLE, BUT MANAGABLE. WHAT THE HECK!

Short story, saw a younger Gastrointestinal doc, he found inflammation in colon and stomach. He treated me with a round of antibiotics and three bottles of a med that was for colitis. I have microscopic colitis. My old Gastrointestinal Doc, put me way to many scopes and still left me on same medication, Asacol. Did not work, 10 a day. Useless. 10″years I,went through stomach problems, uncontrolable at times. No rhyme or reason.

Find a younger doc. It’s helps. Them I tested with Microgendx.com. Then it was PathoGenius.com.
They found 4 or 5 hidden bacterial infections. Serious ones at,that. HAI are being looked over.
Molecular testing is newest Labs and other Labs are not equipped to find these type of infections.

Lastly, I had the support of three doctors. Not my URO, but womams specialist, IDD, amd Primary Care.
So, with guidence Imtreated with antibiotics. Cathed the first four. Fathered 2 DNA round. Them oral Bactrium and Doxycycline. 500 mugs for 30 days, break for flair of E. coli took microbid for ten days as instructed. Then back to Dyxocline. 30 days wait two weeks and retest,with a Micro.

IT WORKED! NO PAIN SINCE FIRST OF 2017. Continue to,add foods back and sodas. Sexually active, planting flowers, enjoying life again. I wait for another shoe to drop, but so far, fatigue is my largest problem. My back is out but that happens. I ve, had two back surgeries, histo, gallbladder,removal, root canal. Also visited nursing homes, cared for my elderly parents, worked with root-on, ate chicken, potatoes, etc. all of which may have caused Entobactor, Enterococcus, klepesela pneumonia. E-coli just,happens.

In hind site I really feel like I,was,dyeing. Going septic would have been next step. Yet, I drove myself to,research, go to doctors, make phone calls and read research. Science is astounding what they have done. Professor Malone Lee, of,the U.K. Marlowe in Aussie, Chung, the list goes on and on.

I made friends on Inspire,that are irreplaceable. I can only hope you’ll do,the same for yourselfs and the people to,come after,us. Awareness is so difficult for IC ers. We must stick together and pay forward what you have learned. I have three Granddaughters to inform along with there Mothers. Who look at me like I,have two,heads.

Off to bed, prayers and hope,for all,

Do yourself,,your husband, you families the test,

What can it hurt, and it may just help an whole bunch

Lily208