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!!!!

These are a few of my favorite tthings

Hey guys, I thought I would do a blog about some of my favorite things.

  First off I LOVE FOOD!!! I love sea food, I love country cooking, I love sweets.. especially oreos and cold 2% milk  YUM!! ....Yikes sounds like a heart attack in the making. I like bakeing cookies with my Grandma. Pretty much if its edible and not the best for me I will probably eat it!!

 Secondly I love Pictures..... taking them, being in them, Photo shopping and collaging them. Even doing this blog about them makes me happy.

I love pigs. I have never been around a real one but I love their cute little faces and curly tails. I have tons of pig toys and figurines in my room.

And don't even get me started about my love for motorcycles. Riding is my favorite thing to do in the summer. I also love the sound of them anywhere near me. The mear thought gives me happy chills. My room is also deck out in motorcycles stuff too.

My new obsession has been bubble wrap. I just cant get enough of the stuff. I could just pop! pop! pop! all day long.

This is just a taste of what makes this girl happy.....lol did you see what I did there?

My Healer rescued me

This year on Dec 29th and the early ours of Dec 30th I celebrated one year of being anxiety free. I have suffered with this debilitating disease in some way all of my life. In the last five years it had gotten really bad. Well that night was no different. I had been have little spurts all Christmas break. That night the mega attack hit!! I felt like I was going insane. I decided right then and there I had been through enough. A few years back our youth had done a drama titled "Set Me Free". Every time they would perform this drama I would think "Thats me!!". I had this drama going through my mind the night of my healing. I finally surrendered.....Within myself I screamed "Jesus rescue me!!!". At that moment I fell back on my bed and came too fully. I felt like something had come out of me and I have never been the same since that day.   

A God encounter like non-other

On Friday, November 2, 2012 I called in Sick to work. Shortly after that I wrote on FB "Laying my heavy head in Jesus lap rubbing his nail scared hand,He never flinches . A Few hours later I had an experience that was so dynamic....So awesome I cried the rest of the day talking about it and just thinking about it.

    I was laying there and all of a sudden I could feel a lap under my head! I recognized this lap though I had never felt it or seen it before. I was also holding a hand and rubbing this had again I recognized it though I again had never seen it or felt it before. I began too feel the hand more....IT WAS JESUS!!! I felt the nail print though much larger then I expected. I felt his long legs (maybe 6'4 ) under my head and hand. I felt his arm around my right shoulder as I was laying on my left side and he was sitting on my bed on my left. His hands were huge. I felt and saw his long white robe with long flowing sleeves. I layed there and basked in him and his love for me. It got to be too much.... I had to get closer...I wanted to sit in his lap so bad. I sat up a little and wrapped my arms around his waist. I rubbed him and clinched him sobbing "why? why did we do this to you?" Why did we hurt you so bad" I got no answer just love.

    I felt him all day I would sit up then down on and off all day never leaving my bed till now.

    I didn't want to leave him I didn't want to leave that place. I am a changed person I will never ever be the same. I want the world to encounter him Like I did that day.

My Summer!!

Well Here I am. My summer is coming to an end. I have less then a month left. I have had a great summer. The last couple of years have been full of sickness and I finally got a summer sickness free. I have been very busy with my church and of course when I'm not there I am sleeping in. I did get to ride the bike this year and boy was that fun. Half way home from the parade I told Paul that I enjoyed this year so much more then last and it was probably because I was sick last year. I wore my vest he gave me and was hoping he would wear his but he didn't.

Now its a few days later and I went for a Dr's appointment a few days ago and as always we go shopping and out to eat right after. Well I am so happy to say during that shopping trip I found and bought the Biker boots of my dreams!! I love them, I even wore them right out of the store!! I had wore the rest of my biker outfit that day but did not have the boots to match!! During this Dr's visit I stressed to the nurse the importance of being as normal as I can be in my situation. My Dr. also loved the get up and "talked bikes" with me which I thought was great.



Ok, on to other things. I got the call this week that I will be returning to Tussing Elementary in September. I love my job, I had started working there last year and got sick so I did not get to work there much. I look forward to a great year and to what God has in store for us!!

The Body is a crazy thing

Today's Blog is about the two conditions that I have and have been dealing with lately. I have been asked many Questions about Arnold Chiari and Hydrocephalus, So hang on tight cause here..we..gooooooo!!!!

Arnold Chiari is where your cerebral tonsils (tonsils in your brain which is also called the brain stem) is pulled tight in to your neck and can cause a lot of neurological issues, mine are tingling in hands, pain and locking up of the neck and the rare swallowing issue that Ive learn to overcome along with headaches like Ive never had before. Here is my favorite link to help you better understand this condition(pictures and all)http://http//www.wacma.com/



I also have What I believe to be Congenital Hydrocephalus which is Hydro(water) cephalus(on the brain) literally translated "water-head." I have had it from birth do to my disability (Spina Bifida) So I believe that makes it congenital there is also acquired which I believe is if you had and accident and that caused it!! I have more research to do on the differences, I have had a shunt for 23 years to drain the water off my brain and have only recently had it replaced. I now have what they call a programmable shunt which is a lot nicer in my opinion then the older VP shunt I had before. With the programmable shunt there is a little magnetic device that is put on the outside of the head to open the valves up no surgery required!! Here is a link to help you understand Hydrocephalushttp://http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydrocephalus.htm#151053125.
So Like I said "THE BODY IS A CRAZY THING"

God Is so good!!

"How great is our God? Sing with me, How great is our God"? This song has Been Going through my head since I have been home from the hospital. I am still over whelmed by how I have seen God move in the past few months. First of all I have the best family, friends and church in the world. I have The best pastor who stuck by me through this whole thing, He's really been Our rock and his family is da bomb, I'm not sure how I would have made it with out them. (he secretly wishes I'd stop saying that). I can't for get My Mom who rarely left my side and Family that came just to give her a break!!

I have so many cards that my two closet doors are covered in them. I have so many people praying for me and calling me and visiting me from church and my family. I even had two of my sisters in Christ that called and came over just to lay hands on me and pray for me. I have seen where my God had this all mapped out before I was ever even sent to the ER. I had in the first Hospital nurses that where Christians and such encouragement to me. These nurses spent hours at a time with me just talking, I found out that one was the same denomination as my family and Even know a friend of mine that I worked with.

Also I was told that I would have to have a Picc Line put in which is a really big IV and I was so nerves that one of thoughs nurses promised me she would come hold my had while it was being placed and sure enough she did, what a blessing that was to me. Even that IV is a blessing, Because of the meds I'm on I have to have blood drawn twice a week but with the line in they don't have to stick me, I'm a hard one to stick.

This now is April Months later and I am fully recovered and back at work and church. Oh how my God has amazed me. I still to this day have thoughs cards up too!! Even now as I go though other things I can say God is blessing me daily with people I don't even know coming my way to help me. I AM BLESSED, I AM BLESSED, EVERY DAY THAT I LIVE I AM BLESSED!!!!

Listen to your Body!!

Hi Guys I'm back, I have been very sick for the past almost year and that's why I've not blogged but I'm back with a vengeance. This Blog is about my adventure as a Disabled person with a Pressure sore and a warning to everyone disabled or not to listen to your body, I'm glad I did because it probably saved my life.

Ok I'll start from the beginning, I Had surgery in September,08 and had not felt the same till now. I had tiredness and just was not me but that was it so I just thought I was anemic so I went for blood work and found out I was not (so they said). I just kept getting worse and in June of "08" I got a pressure sore. I went the DR, and got meds for it and it healed up. Ok fast forward to June "09". I got the pressure sore again in the same spot and still was feeling really rotten with no reason as to why. This time I was told it was fine and was not given meds. I went though my summer faking it the best I could till the end of July. It got worse this time. I went to the DR, and was given meds but by this time it was too late, I spent most of the summer sick and in September 09 it hit me like a tone of bricks. I could barely make it to work or church, every move was a struggle. Then in Oct. 09, I was given the worst possible news, you could see bone. I went to my surgeon only to get another "Oh it looks great your fine. It was that night that my life was changed. I was admitted and told the infection was in the hip bone. I spent ten days in the Hospital, two really because I had to be transferred from one to the other to have surgery to have that bone removed. I am currently at home on IV meds....strong ones to get rid of the infection.

Morale of my story......Listen to your body and don't let people tell you there is nothing wrong with you when you know there is!!

Life is not a bed of roses

Today I am in a typical young Women life's not fair mood!! I have thoughs days sometimes. I have a pressure sore at the most inconvenient time in my life when everything else us going good or at least ok this thing pops up. The worst part is the only thing a Dr. can tell me to me do is stay off of it(yeah like that's gonna happen....sheesh). What people don't get is even though I'm disabled I have a life and a full busy one at that, I don't just sit around or lay around doin nothin all day if I did I would start to loose interest in life and eventually give up on it. Ok I'm finishing this up a few weeks later, yeah weeks and the sore is worse. In an attempt to make me feel better a friend who works with severely disabled children told me to sit on a bean bag, at first I thought she meant a little bean bag like you play toss with but after I stopped laughing she said no a bean bag chair, sounds crazy but just might work! Well here we are a month in to this thing and nurses have been brought in and a surgeon seen as well as I've pretty much been put on bed rest and I've been told that it will take six months to get this thing healed and that I'm actually "Lucky" its not worse!!! So ya now I'm at that "my life is over" over reaction point that I think so many come to at a time like this. I have been told I'll be ok and life will resume to normal in a while but for now my perfectly normal life has come to a screeching Holt. I and my family both have been very irritated because on top of all. I go though with these things we now find out that my doctor has not even been aware that I have been trying to get meds for a week and just now got them. I am now having to get use to an air mattress on my bed and air cushion on my wheel chair (FUN). I Just wish this "thing" would heal so life could be normal again. well that's enough for one blog hope the next one is happier.

Its a mind thing!

I am doing Today's blog to really help people understand how I think. Here we go! when I am in my chair and my hands are to the side I am standing, When I'm in my chair and my hands are in my lap I'm sitting. When I'm with a group of people who are standing so am I and if they are sitting well then so am I. I have heard it said She just wheeled her chair here and there or whatever Under no circumstances have I ever "wheeled" in to a room or "Wheeled" up to anyone before, yeah to every one else that's what it looks like but I'm just walking or standing like anyone else but I do it differently. I'm in the Choir and this is where it gets fun, if you see me wiggling its just me tapping my foot to the beat of the music. If you see me lift my upper body up a little it is the same as you doing a calf lift. If you see me turn and lift my body in a circular motion is like stepping one leg over the other the putting them together!! This is the hardest blog Ive ever done cause I really have to think about what my motions are!! It just comes natural to me. "ITS A MIND THING"

My new chair is here.....FINALLY!!!!!!

Hey guys yeah you heard me right it is finally here and I love my new chair. If you have been keeping up with my blog you know that I ordered this chair in September and I am just now getting it. I love the color, orange Guess why, Any guesses? Give up? To match my Harley-Davidson theme of course.


I am so glad that I have a chair that is not falling apart. The brakes and tires work great and the belt is intact which sounds minor but to me is a big big deal . I am sitting up a little taller in this chair so that will take some getting use to and the handle bars are Higher so every one loves that it will be easier to push I just wonder how it will be to lift up steps and transfer to my grandmas high bed in i guess we shall see.

I'm in the choir Yall !!!

(Member of Voices of Praise where : "Its not about us its all about him")

Well folks I'm in my church choir and I love it!I joined about a month or so ago after over two years of not singing at all, you see I was in the choir at my former church and in school but when I graduated that all fell apart. I only have one complaint I am vocally so out of shape and often can feel it after a really strong song. (hallelujah any how)

Let me just tell you the men of the choir and church have really stepped up to the plate they just lift me up them stairs like its nothin of course as in everything my pastor is the master mind behind that operation and I am never at a loss for help I always know I have someone that will help me when I need it.

And the ladies in the choir are just the best, I always have three each Sunday ready to help me put my choir robe on when I get to the choir room/fellowship hall and at the end take it off, even on my weak days they are so patient and understanding.

Sometimes life with me can be tricky but they all are learning how to handle me.

I love my church family and God is really blessing and moving in our services and in our practices in a miraculous way.Praise God for his many blessings!!!!

As our pastor would say "be blessed now".

I Stand on my head and yes I have a bed!

Hey Peeps sorry it has taken me so long to post again.
Today I am talking about how I get dressed and how I sleep. I can't name the times I have been asked "Do you sleep in your chair?" My answer is NO I don't, I have a bed and blankets and a room that all of that is in. Below is a picture of me in my bed.


I also get asked how I get dressed and when I tell people i stand on my head their eyes bug out and I get the oh so funny " your kidding right?" or "No way" and I laugh and say "yep sure do". I have to be honest this idea came out of anger and frustration after camp counselors ( camp Easter Seals) tried to teach me how to get dressed by turning from side to side to pull my pants up, when I got home I tried that and said this is for the birds there's got to be a better way so i flopped over pulled my pants up and was done. So there's that story too, hope you enjoyed.



Well that's all for now I'll be back next week when I have more pictures taken!

finally my new chair is coming

Hi Guys I just got word today that my new Manuel chair will be here in about three weeks. I Have been waiting since September 17th ( that's when I ordered it). My old Manuel chair is literaly falling apart and I'm way over do for this one. This is a lesson well learned, when buying a wheelchair from these company's bug'em, bug'em and then call and bug'em again til you get what you want.

My new chair will be a bit narrower and the front will be different also it will be colored orange to match my motorcycle theme, I will talk more about that later.

On to other things, I'm loving this whole Blog experience. I just put the site on my e-mail and My myspace so that all of my friends can read it and learn a little more about me.