The Kidney Stone Saga part 1 and 2

 The kidney stone saga part 1

( DISCLAIMER: A lot of these links have the word cancer in them but I DO NOT HAVE CANCER.  I think its because that is one of my new Doctors specialties) 

Define Kidney stone and give info on it ,  https://www.mayoclinic.org/diseases-conditions/kidney-stones/symptoms-causes/syc-20355755

Define Stent: https://en.wikipedia.org/wiki/Stent

Define Right ureteral stones https://my.clevelandclinic.org/health/diseases/16514-ureteral-stones

 hydronephrosis https://www.mayoclinic.org/diseases-conditions/hydronephrosis/cdc-20397563

Define sepsis   https://www.mayoclinic.org/diseases-conditions/sepsis/symptoms-causes/syc-20351214

Surgery: Cystoscopy,

 right retrograde pyelogram   https://www.healthline.com/health/retrograde-pyelogram#preparation

right ureteral stent placement   https://my.clevelandclinic.org/health/treatments/21795-ureteral-stents

It all started 6 years ago with one kidney stone removed and one that they said couldn't be reached. once a year for the last 6 years I have ended up in the hospital with a sever UTI from this thing but nobody wanting to touch it.

 3 Doctors and 2 hospitals later.....

Fast forward  APRIL 2 2022 I went to TRICITE ER with all of my usual UTI symptoms where a CT scan with contrast and bloodwork was done and IV antibiotics started. After several hours I was transferred to  Johnston Willis ER for 16 more hrs. 19 hours in 2 ERs later I was admitted to Johnston-Willis with kidney stones and kidney infection. 16hrs with no internet or cell service thus no way to contact my circle and no food because I could possibly go into surgery at any moment  made my anxiety act up as you can imagine.

 Around 6am on Monday morning They FINALLY  took me to surgery for stent placement in my right kidney.  

All that time with no sleep or food is exhausting! mom slept while I was in surgery. I obviously slept in surgery.  Surgery was  over in 15 minutes , Thank God!!  but I stayed in recover 4hrs waiting on a bed to be available in ICU step down. I finally got a room after over 4 hrs in recovery. After five days on that unit with a heart monitor ( that could be a whole blog in and of its self if you want it) I was released on  Linezolid www.msn.com/en-us/health/drugs/linezolid/hp-linezolid . Its a pill... The most miserable drug I have ever been on and I have been on quite a few. I provided a link because the precautions and things to avoid were too numerous to name. 

 Kidney stone saga part two

April 25th

Surgeries: Ureteroscopy: https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/ureteroscopy

laser lithotripsy: https://my.clevelandclinic.org/health/treatments/16285-holmium-laser-lithotripsy#:~:text=Holmium%20laser%20lithrotripsy%20is%20a%20procedure%20that%20uses,stones%20that%20are%20located%20in%20the%20urinary%20tract.

ureteral stent exchange:  see stent and think swap out.

Surgery was supposed to be at 11:30, pre op was at 9:30am . surgery time got pushed back 30mins because they couldn't find a vein for IV.  they finally got it in the left hand I told them not to use because I felt like I already had nerve damage in it from the ER.......but ok whatever worked to get it done. 

About an hr later Procedure was over and I was in recovery.  I had tons of stones!  He blasted as many as he could before he said it started looking like a snow globe and he couldn't see any longer. Next   surgery is  June 15th to get the rest.  After post op Xray he said he isn't sure if Its full stones or dust collection.........I guess we will find out.

Chiari Malformation and Me

 Chiari malformation-kee-AR-ee is a condition in which a part of the brain at the rear of the skull bulges through a normal opening (foramen magnum) in the skull where it joins the spinal canal. This puts pressure on parts of the brain and spinal cord. It can cause mild to severe symptoms. In most cases, the problem is present at birth (congenital).  

Chiari Malformation unlike Spina Bifida is an invisible condition. You cant see the brain fog or the pain or the fatigue. Therefor many with the condition are made to feel stupid or like they are faking their symptoms.
Let me assure you that this condition is very, very real!!

I know I have done a blog on this subject before but that was several years and a lot more education and experience ago. I have had Chiari Malformation for 20 some years. I had very mild symptoms until I had my lower back refused from Spina Bifida last year and then BAM! all of these symptoms came up and the ones I already had got a lot worse. My older blog was also more about facts that I knew at the time. This time I'm writing about my own personal experience with Chiari Malformation(For the remainder of the Blog I will just refer to it as Chiari.). What I go through,What it looks like FOR ME. I will attach some links to educate you more on the condition itself.

As I type I am month long Chiari "flair up" so please pardon me if my writing doesn't sound quite like I normally do.

First off lets talk brain fog and fatigue......Its probably the worst symptoms I battle with on a daily basis. Even as I type brain fog is making it difficult to remember half of what I want to say in this blog. I'm having to write notes and send messages to friends of things that pop into my head that I want to put in the blog. and fatigue well she's just a whole 'nother bear. Fatigue is making it hard to WANT to write so im doing little bits of it a day. I spend a lot of time in bed and when im up I try to pack as much in as possible but then im down again for another day or more.

Anyone that knows me knows my two favorite days of the week are Sunday and Thursday. Just to get ready on a Sunday is exhausting. Just pulling down what I want to wear and putting back what I dont need is exhausting. I have to go wherever I'm going early just to rest before "doing" anything. If I know I will have to actively participate in something ie.chior that I love so much. Ok now let's talk about random pain that you never know what will set it off. Anything and I mean ANYTHING can set it off. I can be fine and then BOOM!! A rageing headache from the weather or joint pain from weather or anxiety. Neck pain can come on from just lifting something wrong or sleeping wrong so can back pain and side line me for a week or more. Just being over stressed or doing too much can make my body ache. I have to plan EVERYTHING EVERYDAY. I have to have at least one day of bed rest in between days of any activity or I am out for several days in a row unable to do anything. Chiari malformation is no joke!! Its the most debilitating and life sucking condition I have ever had. Medscape-Chiari Malformation Chiari Malformation Mayo Clinic International Chiari Association

Part 2 of my shoe saga

Hey ya'll I'M BAAAAAACK!!! I feel like I say that a lot lol. I am really gonna try to keep this up now though soooo here we go!!!

Ya'll know if you have been following me for any length of time that a girl has feet issues. If you are new here then let me give you a little back story. 

For as long as anyone can remember, My feet have been chronically swollen and blue, so much that they looked like they were going to pop and every doctor and nurse that saw them would lose their minds. However nobody could ever tell me what to do about it, except to keep my feet up which didn't help much at all. I mean I'm a busy chick and cant stay in bed with my feet propped up all day and all night like the queen I think I am :).

Flash forward to January, I hurt my back and put myself on bed rest for awhile. I'll get into that in a later blog but long story short I had back surgery in May. Weeeeell after THAT my swelling and blueness have gone away and the only kind of explanation I have as to why is that I do rest in bed more but not a whole lot so its still very weird to me. But I thank God for it anyhow!!

So as you can imagine I have always hated my feet and shoe shopping was a complete nightmare. 

Not anymore!!

Last year when we went Christmas shopping I bought shoes in a size 8 and 9.

This year.....drum roll please...I bought size 6 and 6½

's with room to spare!!!! 

This is my Christmas miracle

No You Don't Get It!!!!!!!!!!!!!! No You Don't understand!!!!!!!!!!!!!!!

   If I hear one more able body person say "I know", "I understand why you feel that way" "I get it" I am going to SCREAM!!!!

   No you don't understand my life or this disability!!! You Don't get what its like to be me day in and day out!!!!!
  
You don't know what its like to feel free as a bird one day and locked in chains the next.

You don't know what its like to have to depend on others for EVERYTHING!!!

You don't know what its like to have to say "I'll try to be there if I can get so'n so to bring me" or "I cant come to that because my body requires all day medical intervention twice a week just to function"...... the severity of which I hide. You don't know what its like to have your body humiliate you!

   So no you don't get it....... but thats ok......you couldn't possibly understand it because........Well... YOU AREN'T ME!!!!

HOPEFULLY What you mean if anything is you want to understand what its like. You wish you could understand me better or even take this whole thing away from me if only for a day.


I have been VERY RAW tonight!! An open book. I hope this makes someone out there THINK!!

A new direction!!

Hey folks!!!!! I have suddenly realized that my blog has taken a much different turn than what I had originally envisioned it being.

  I had  wanted it to reflect how I do things to be as "normal" as possible having Spina Bifida and to give others like me hope. However I find that it truly is just a hodge podge of my life,what goes on in it and my thoughts and feelings.

 That's fine. I'm not complaining. I hope that through this I can still be as educational as I had planned even if its learning about me and common sense education about the disabled community.

I hope by the time you are done reading any one of my entries you have laughed or maybe even cried but always that you come away with new insight into my life and the disabled community as a whole.

So won't you join me on this ride? Hang on tight! you just never know where we will end up next. As always enjoy the ride in Spina Bifida, My point of view.      

Rosacea is the pits!!!

No really! I have had what I thought was acne (scars =pits) for years leaving my face and body looking a hot mess.
  Well Mom was DX with Rosacea with other symptoms and as we did research it looks like thats what I have too and NOT acne.

   The more we read the more symptoms I recognized. I get really flush in the face and hot and people think I'm blushing. Nope just a flare up!

I also have what is called "cherry nose". My nose gets really read and the rest of my face stays normal without warning. I hate it! people are always asking me if I'm ok when it happens. The last and possible most annoying sign is my hands get really read and hot for no reason with no warning.

We also found out that this annoying condition is hereditary......GEEEEZ thanks mom ;D

 So yeah Rosacea is the pits!!


To find out more about this condition and to see if you may have it you can go to the link below and read up on it http://www.rosacea.org/

Crazy dreams!!!

Hey guys!!! Long time no blog lol. I have been wanting to do this blog for sometime but have been unable to and now I just feel rusty. Well here goes nothing!!!

     I have been having these weird dreams every since I started on a medication for my PMDD (Premenstrual Dysphoric Disorder). I'll come home from work around 2P.M and sleep till 6:30 A.M. the next morning and during this time I'll have these weird dreams.

    Some of the dreams are of normal people in my life just not in their normal places. I'll like be at work with church folks and at church with work folks. Other times Its normal people turning into weird creatures or in weird situations.


   But I always remember them and wake up thinking.....WOW WHAT A CRAZY DREAM!!!!