heres another song for all of you enjoy

I love thsi song and video this young lady also has cerebral palsy the song is by willow smith and if you search this beautiful young lady on youtube she has many other videos that will inspire thsoe of us with cp

second week of devember is almost over here comes the dreaded snow

this winter has been hard for me even though the temps have been fairly cooperative. Spasticity is not being so cooperative. the snow is coming which is increasing my anxiety on wanting to go outside at all with the fear of falling which i have already done once since it has gotten colder. This is why depression sets in for me so much this time of yearI miss the warmer weather where i can go out and enjoy the out doors already. I really want to swim this comming summer I have not been able to do that in three years i did sit in the water a bit last summer which felt awsome.
I have been thinking really hard on my new years resolution. i dont normally make on ebut i need to this year with everything that has happened to me and my family i need to get healthier. I want to get back to my low sodium diet and also try to lose some weight to see if that helps with my pain. I think the hardest part of losing the weight is sticking to the exercise part withte increase spasticity I get so tired so quick latley but i feel that i really need to do this But i can say im going to neesd lots of continued encouragement on those days where i just dont feel liek doing anything  and lots of people telling me its ok when those moments do come that I physically can not do the exercise because of the pain.
I dont want to have to rely on meds to control my pain I want to be as med free as possible and try to live as activve of a life as possible which i do with watching my nephew but i need to get healthie. writing this also for the bad days i have i can go back and look at it and realize how much this means to me. I have done it once but the second time seems as though its gonna be a bit tougher lol I am going to take pics of our holiday decor soon and post them for you all to enjoy

Another year older so not wanting another irthday lol

I turned 27 on friday it feels so weird to say 27. I dont feel any different being 27 and am happy to be through another year and am looking forwantrd to the new year in hopes of continued better health. this year i have to say has been one of the most trying ones yet from moment one. the endometriosis was pure hell for a long time then the ankle started really gettign tight which was kind of a shock then the surgery for the ankle and the endometriosis within two months of each other and the stroke that dad had I am definately looking for better days ahead.
thigs are more positive now though I am in less pain with teh ankle after the surgery although i can not walk very much without my AFO. the endo is fairly calm except for about a week out of each month right now and I am well aware that it more than likley will progressibly return to severe pain but I am enjoying the time i have that is with less pain.
My hip is still giving me trouble and so is my spactisity I am very nervous about what next year will bring. my legs are really painful this year and it is hard to walk this winter I am afraid that i will need assistive equipment in the next few years but if that comes I will get through that as well. 
I am starting PT for the hip on Monday not looking forward to it and really wondering what is next if it doesnt help very nercous with that as well. I have done cortisone shots had a bone scan mri x rays in the past and nothing showed. 
Things witht he body are so much harder to understand with cp. I know that pain is a normal part of spasticity but i did not invision things getting this difficult this early.
I got a call from the physyatrist teh other day which I had no clue was comming i was seen by him six month or so ago and it was left with not knowing why i was there so no appointment was scheduled at that time or not that i was aware of so i went about my life and started the process of getting back to normal with the pt that i need and then tehy call i was liek I had no idea i was suposed to return to ou guys i thought I was through with service since the doctor didnt reallly descrive what he wanted so I am not sure what to think on that but i am taking tings step by step and day by day that is all that we can do.
I hope that everyone has wonderful hollidays what ever it be that you celevrate and may the new year bring new hope for all of us

update and welcome to december

it is hard to believe that another year has nearly gone by. this year has been a very long one for all of us. So many things have happened. two surgeries for me dad having his stroke teh birth of my new oh so handsome nephew the death of my puppy. But I have come through it all a stronger better person. There have been so many times where it has seemed impossible but I have done it.
another wonderful thing that happened this year is I met my wonderful counselor that i see now who has been wonderful to me. 
now on to the update on me. I have finished pelvic pt and I am very sad that I can not return there for my orthopedic pt I loved my pt's that i worked with at holistic pt they were wonderful all of their office staff are great but on a good note I am starting pt for my hip again on the 17th of December at mercy physical therapy center in Portland  Really and truly hoping it relieves some of the pain again  I am not in the mood for invasive shots or injections of dye again to see what is going on but I will do what i need to do to feel better.
I am not sure how many older people with cerebral palsy follow me or read without following but I have been experiencing a big increase in my spasticity this year especially since it has gotten cold wondering if this is common  wishing there was a doc out there that just dealt with cerebral palsy and took the time to figure out what is what with the condition.
I am really just confused and sad because I am afraid that because of pain and tightness i am not going to be able to walk in a few more years. I fell the other day in my driveway because of spasms and scuffing my toe despite the AFO which does help. It is really hard to walk without it well i think that's about it for now i will update more as the month goes on

Multipule medical conditions really suck frustrated right now

Looks like I will be adding yet another physical therapist to the already confusing realm of life. which means telling my story another fifty times. I was in pt for pelvic floor issues and had the script sent for the orthopedic issue because they do orthopedics there but there is a waiting list for the orthopedic issue and there is no estimated time they can give that they would be calling for evaluation . I am so tired of having no consistency when it comes to something so important. I really struggle to understand why on earth they force those of us with cp and other issues that affect our function physically or mentally to go through all of these therapies through school and for me even before i started school i was three when my life of therapies started they force us only to turn around when we are in high school to say oh you will no longer receive this service on a regular basis. then to find that hardly no pt places take my insurance I have been to three different places for pt since i had regular pt in school absolutely none of them seem concerned with anything I have been treated like another number until i found holistic PT. The treat me like a person not just an issue. I am struggling on weather to call any other place they gave or just suffer with the pain until I can be accepted back into holistic. I don't want to feel like just another number again. One of the places that i went for pt actually told me I do not have tone issues which is far from the truth seeing as i have the diagnosis of spastic cerebral palsy and that is one of the places that accept my insurance. I feel so frustrated all I want right now is to get things so that I am not in pain all the time. the pelvic floor therapy has been wonderful and I am in much less bladder pain. I am ready to make permanent change in life and stick to the things i have to do to change but it is so hard to do that when I am feeling tossed between places. i went to the orthopedic yesterday and he said things are looking in the right direction even though I told him i was still having hip pain and he did not feel that I need a follow up with him the goal of surgery was to get my foot bracable well ya its now bracable but my original complaint was hip pain and I am still having that portion of the issue. He does know that I am supposed to be going to physical therapy and was satisfied with it. Just feeling very lost right now. going to see what the primary doctor recommends before i jump into anything. I am not for making these choices on my own

update on walking and pt and happy thanksgiving

wishing all of my blogger family who celebrate a Happy thanksgiving. Had another pt appointment yesterday she wants to phase out of the pelvic floor stuff because that is going really well and work on cp related stuff. She worked on my legs yesterday and said she is surprised I am walking and as functional as I am with my spasticity. that was really shocking for me. i knew it had gotten harder but living with tightness i dont realize it She told me to get another script for pt where I am having hip pain so lets see how this goes Im not sure that my insurance will cover any further pt but we shall see I see the orthopedic on the 28th and will be adressing the issue with him to see what he thinks. i went to see a physiatrist once and didnt really hit it off with the group they told me a had very little tone but aparently i have more than a little so I think i will skip going back to them and see where regular old pt goes

brace pics

the brace is finally made and fairly comfortable it only really gives me any discomfort first thing in the morning when i put it on after having it off to sleep. Still on the lookout for any skin breakdown or pressure marks but so far have not seen any hoping this helps to prevent any further need for future surgery

pelvic pt update and brace update

I finally got my brace on Tuesday and I had another session of pelvic pt today. Which means that she had to watch me walk  typical pt ha ha its good though cause it shows that they are looking at the whole person not just the one problem I am there for which is why I really like the pt that i see now. she instantly said better walking so i take that as a good thing and so far the brace is going well the only thing is I have to watch for skin breakdown or tender spots which i knew but just didnt remember to do so but I will be checking tonight and if anything is found letting them know where  to see if adjustments are needed
PT i never thought i would say this but it is officially helping. i can feel a difference this round it doesnt just feel like extra work yes its hard and it is work but it is decreasing the pain and symptoms of my bladder so I am willing to work my butt off if it means relief. keep the positive thoughts coming though cause I often jynx myself when i share the good news. I have been able to sleep through teh night now for two nights with no meds for pain.
the endo is still tough but I can say that I now know when that is acting up rather than just feeling constant pain I am much happier and feeling better thank you all for the continued suport and I hope all of you are well. Would my Emma and Malayna or their mommies drop me a hello I have been thinking of you both alor latley hugs

My crazy life continues

I am currently doing physical therapy once per week in hopes of reducing my pelvic pain and bladder issues. It seems to be helping a bit but it will be a long road and a continued commitment beyond the eight weeks to see marked improvement. the physical therapists i have now are wonderful ladies. One that i work with i met a long time ago back in school it has been really nice working with her again she was one of  the few physical therapists that i had back in my younger years that i was able to connect with. My main physical therapist this time around is wonderful as well. she has taken the time to try to get to know me and has a bit but I have not been really allowing full connection I have told her all the important info that she needs to know to treat me basically how it works is she asks the questions i give the answers it isn't quite a two way street yet lol I am working on that though. It has always taken me a while to connect with people  especially in the physical therapy or doctor stand point. so many are not caring and just treat the issue they don't see me as a whole person which is really hard and over the many years I have just come to expect that so when i find someone who is different it catches me by surprise and I guess i basically wait to see if they are going to change tides to speak as time goes on.

They have told me information i did not even realize this trip with PT I really love the fact that they take the time to explain everything and double check that it makes sense and better yet they try their best to incorporate the exercise routine into my daily activities which really helps. I know that some of it isn't able to be incorporated but i love the fact that a lot of it is they are working really hard with me on strengthening my glutes pelvic floor and the large muscles in the tops of my legs and the appropriate way to lift. that's a tough one for me since I have basically invented my own way of moving that works best for me.

Dad is doing well he is improving slow but sure he has been doing a lot more standing lately today we had issues with out hot water heater and my uncle was fixing it he got up from his chair in the hall near my bedroom door and walked in and was watching go dad woot woot I am very happy to see this it is going to be a long road but he is determined and will overcome this too. We went to a play last night called the mericle worker it was really good Dad used to clean for the school that was putting the play on and they all miss him so the drama director invited us to come it was nice and he got to see a lot of people he worked with before his stroke he was very happy and enjoyed it.

I had a bad spell with hip pain again which seems to have been connected to the cyclic pain of the endometriosis because since i have stopped bleeding and the pain of the endo has calmed it isn't painful weird how things can affect life sometimes. I have to go for an x ray to make sure nothing is going on though because my doc ordered one I will more than likely be talking to my gyn about this soon to see what she thinks after i explain the whole scenario to her

I am still waiting on my brace and shoes but I think im getting them Tuesday yay for that i cant wait. I am not usually happy with having to wear something all day every day but it might help with more of the hip pain as well and it will help prevent my ankle from getting tight and my foot becoming plantar flexed again which was very painful. the surgery was hard and the recovery seemed never ending but i do not regret it now. I had a few very difficult times during recovery but i made it and I am thankful that i found a different doctor who treats me well and listens to me when i say something is not right. My new orthopedic is wonderful too I have made quite a few changes with medical providers in the past few years and they all seem to be for the better thus far
I hope all of my readers are doing well and relaxing as much as possible I am not ready for teh cold weather yet but its here guess i will have to struggle with another winter

Life is total craziness right now but its in a good way

I have been totally busy latley but it is good for the most part besides im exhausted haha. I started pelvic floor pt on October 8rth the first appointment was just a get to know each other appointment with my primary pt and thursday was the second meeting where they did some of the work . My pelvic floor is really tight so hopefully pt will help with some of the pain 
My niece started kindergarten this fall and she isnt a huge fan of school especially with all the medical things going on with dad and the stroke. dad is making progress he has speech coming back to him slow but sure some days are better than others still but at least we have him with us. I have a new nephew who i have been spendign alot of tiem with the past two weeks hard to believe i am an auntie to three now wow never dreamed id have one Im one lucky auntie. I think that is about it for today just giving an update hope you are all doing well 

gyn update

Had another appointmetn with my gyn. She said that hysterectomy is not off the table for me yet but she is hoping to avoid it and hoping that the physical therapy will help with the pelvic pain. she said that if the PT does not help the next step is choropractor but that i need to do the pelvic pt first so that there is not a ton going on with my body at once. Pelvic pt is a huge uncharted territory for me so I am a bit nervous on this note but i guess this whole adbenture of living with endometriosis and IC is uncharted too.
She said that the fact hat my cycles are more regular is a good thing I am not so sure with that haha but I guess I have to take it as god news. I got my flu shot yesterday as well so I am feeling kind of icky today they say its fact that you cant get sick from a flu shot but every year that i get one i feel crapy for a few days afterward. I think that is about it for this post just taking life on day at a tie right now thursday is my second physical therapy appointment for my pelvis not sure how much detail ill be sharing on that over the blog lol but i will definately keep general updates comming and let you all know how it is working or not working  I will be going for at least six weeks the pt wants eight but insurance is only willing to cover six which is more than two like it would have been a year ago so i have no complaints

finally got the brace and shoes figured out

I called the orthotics place again yesterday and finally dug all the way to the bottom of what the mystery was. I knew the shoes i had ordered were on backorder but they did not give a time frame of how long the first tiem i called and said they would call back in a week or so and update well I didnt gear anythign so I called and they told me the shoes would not be shipped until mid november because they are made overseas and they are turnign away truckloads of them because of factory defects or poor quality I was like well change them to a different shoe I am not waiting until novemver that is when my orthopedic appointment is  so I am getting my brace and shoes on tuesday after a two month wait so ready for them thats for sure I will post pics of teh new brace and shoes  when i get to take some

update on everything

I am suposed to have my first pt appointment monday but not sure that can happen as i am having a bleed which for the endometriosis front is not good we were hoping that the IUD would stop my bleeds thus cut down on my pain level but so far that has not happened the good news is at least my cycles are becoming fairly predictable on the maraina. Dad is doing well he will be more than likley going into out patient rehab soon where they specialize in neuro rehab it is the same place he was in after his stroke but he will be out patient which means he gets to come home to us after his therapy appointmetns yay for that. the brace and shoes are another story in and of themselves still do not have them have not heard when they will be ready I am walking without a boot because it was starting to hurt my foot to be in the boot but it isnt too much better with just the shoes but its tollerable for now I kind of feel tightening going on in the ankle again so when i go bakc in november i may ask for some pt on my foot depending on what the pelvic pt brings me I am not sure how long this will be needed so we will see how it goes hugs to all who read my blog

Urology update

had my appointment yesterday they did the cystoscopy proceedure where they use a scope to look into the bladder. good news the iner surface of the bladder looks prestine bad news is he feels the pain is nerve related and I need pelvic pt. Kind of afraid that the pain will continue to return.

update on me

i have been posting alot on IC latley but have not updated on how I am doingI am actually going through a really hard time right now. There is alot of comotion around the house with dad and allAnd i feel like I am constantly under the watchful eye of someone else. It ahas been bringing back alot of the feelings that i had back in school with all of teh ed techs and teachers constantly watching me It doesnt feel well at all I never really dealt with all of that and I just kind of let it get burried under things that have happened since if that makes sense its getting me pay back now lol.
I have been really busy as well with every thing going on I have been helping get my dad set   up for speech and things I made him a board for picture symbols but his speech therapist has now suggested that a book of picture symbols may be easier as it can hold more pictures of different things. So that has been one of my missions as of today is to get that started I have so far gotten all of the cards that were on the board in lamination pouches so that they are soon to become pages of his book I hope to take pictures of ths project so that you all understand what i am trying to explain. My niece has also started kindergarten this fall so it has been interesting with that as well she has had a rough few days with school as she missed a bit becausse of an ear infection but i think we have gotten that all situated now and her feeling better. I also became an auntie to my third this month my sis had a veautiful baby boy who is 11 days old. i have been spendign time with him when he comes down to visit. I am so thankful for all the kids in my life because of the fact that I may not ever have children of my own.
I also dont know if i posted this earlier or not but i have a new counsoler closer to home for a few reasons and I love it. dad is making gains slow but sure he is becomeing much more independant as time goes on he is still in a wheel chair but is able to verbalize more and more. all in all a very busy house hold oh and unfortunately another uti for me not so much fun but Im getting through it. Still waiting on my brace and shoes getting a bit annoyed tha it is taking so long.

What other conditions are associated with IC

Day 8

People with IC often have associated conditions. Here is a list of the most common conditions.

Allergies and sensitivities to chemicals foods and out door allergens

Celiac desiease which is a condition where the body is allergic to gluten which is found in wheat rye barley and oats that are not processed in a facility with wheat rye and barley the doctors thought at one point that I had this condition but my testing was negative so I am lucky in that aspect.

Chronic fatigue syndrome

Chronic prostititis in men

Endometriosis often known as IC’s evil twin or sister I have this as well as IC it is often hard to distinguish between the two pains but I know the urinary issues are the IC

Fibromyalgia

Irritable bowel syndrome this is painful as well I have been diagnosed with this condition since I was eight or so years old.

Lupus

Pelvic floor dysfunction

Pudendal neuralgia

Volvidynia

what treatments are used for IC

Day 7

There are treatments that may work for people with IC but what works for one person may not work for another. If you are diagnosed with IC and nothing that has been tried is working please research and dig for things that may help you every person is different.

Elmiron- is the only oral drug approved by the FDA to treat IC by coating the bladder thus hopefully preventing irritation. I took this for six months and it did not help me in any way.

Pelvic PT is another commonly used treatment for IC and pelvic pain. It is a hands on treatment which addresses the muscles helping to loosen tight pelvic muscles and other causes of pain in the pelvis,

Amnetriptilyne  Elavil and tricyclic antidepressants in general are also proven to treat IC pain they do so By vblocking the reuptake of saritonin and also blocking pain receptors in the brain.

Antihistamines such as Hydroxazyne Claritin and others can decrease IC symptoms By interfereing with the mast cells this treatment works well in patients who have allergies as well. Hydroxazyne is the most commonly used antihistamine used to treat IC

Bladder Instilations are treatments in which medication is placed directly into the bladder through a catheter. There are many medications that can be used in this procedure but the one that I have heard most about is DMSO. I have not yet tried this as the urologists continue to refuse to give me instills but I am hopeful to fined a treatment that leaves me in less pain in this long journey.

There are some surgical procedures that are considered as last resort treatments such as bladder remobal or cystoscopy with bladder systention there are also pacemaker like devices that can be implanted under the skin near the tail bone in the but cheek area of patients after a tiral period proves that they are effective

What tests are done to diagnose IC

Day 6
There are many tests that can be done to diagnose IC or rule out other conditions these tests are
Urinalysis to ensure that no infection is present in the urine of the patient suffering IC
Urine culture where the patients urine is sent out to a lab and put in a dish to grow for a few days usually these are also negative
Cystoscopy this is a test that is done either under general anesthesia or awake where a camera is placed through the urethra to view the inside of the bladder in some cases of Ic the bladders look normal however in some cases they have small bleeding patches in the bladder and others have larger areas of irritated inflamed tissue called hunners ulcers.
Bladder capacity test this is done to see how much urine the bladder can holdsome people with ic have reduced bladder capacity due to being unable to hold urine because of pain and discomfort this is called stiff bladder or hard bladder. 
Bladder and urethra biopsys are done to test the tissue of the bladder and urethra often times in ic these will show areas of tissue that are sloughed off or damaged as it did in mine despite the scope appearing normal.

how many people are affected by IC

Day 5
847,000 people In the us alone are managing IC at any given time yet it is classified as a rare disease. I truly feel that more research is needed for Ic because there are so many people who have IC it should no longer be classified as rare. 
3.what i wish people knew about IC

Risk factors for IC

Day 4

Sex woman are diagnosed with IC far more than men men can hove IC but often have identical symptoms but it is caused by enlarged prostate gland.

Age most people with IC are diagnosed in their 40’s

I c is often associated with other chronic conditions such as fibromyalgia IBS and endometriosis the connection between these conditions is not yet known.

What is the cause of IC?

Day 3

The cause of Ic is not yet known there is no one single cause. Most people when asked when their IC began will say that it started after a traumatic event such as a fall or accident or pelvic surgery after child birth The common factor in all of these situations is that they irritate the bladder wall. Some research has shown that the bladder in Ic patients is more permeable meaning that the lining is damaged allowing irritating substances to get into the muscle of the bladder.

I had a cystoscopy done to diagnose my IC and to see how much my bladder was damaged. The doctor stated to me that the exam of my bladder appeared normal however when I spoke to another doctor she said that in biopsies there were areas of tissue which appeared to be sloughed off leaving small areas of my bladder muscle unprotected by the mucosal lining which protects the bladder muscle from being irritated by urine and other irritating factors

IC symptoms what are they?

Day 2

 Unexplained pain or pressure in the urethra, vagina, inside of thighs, or the area above the pubic bone. Pian can also be felt in the lower back and groin area.
 Pain durring or after sex
 Freequent painful urination Normally people urinate between six and seven times aily but and IC paitent will urinate from fifteen to sixty times daily.
 Ic patients usually wake one or more times per night to urinate
. having the urge to urinate even after emptying the bladder.
 unresolved urinary tract symptoms that do not respond to antibiotic therapy
. symptoms come and go flare ups are comon and can occur in response to many factors examples include food' menstrual cycle' and stress.

 Ic does not discriminate and affects men as well as woman here are the sumptoms for men
. Pain and or pressure in the penis, testes,scrotum,the area above the pubic bone the groin lower back and abdomen
. pain with ejaculation or a day after you ejaculate
 freequent urination as above for females wake one or more times per night to urinate
 Feel the urge yo urinate even after emptying your bladder.
 symptoms come and go and do not respond to antibiotic therapy when treated for urinary tract infection.

 I know that symptoms are nearly the same in womenn as men but I feel it is important to educate people that IC is not just a womans condition it does effect men although not a s freequently as females https://sphotos-a.xx.fbcdn.net/hphotos-prn1/37194_174888775855095_7466675_n.jpg

A bc s of chronic pain by amy fulk

welcome september and ic awarness month

 day 1 

what is IC Interstitial cystitis

IC is a chronic condition of the bladder that causes pain associated with urination and with bladder filling. The pain is often relieved some after urination occurs but some patients have chronic long lasting pain all the time Some people with Ic have hunners ulcers which are large patches found on the bladder wall while others either have small bleeding areas and still some have no issues that are evident ie bleeding on cystoscopy.

IC awarness month begins tomorrow

Interstitial cystitis

Frustrated

I am a step closer to getting my brace and shoes but i am just so frustrated. the doc told me that it was ok to try and walk with my sneakers on and I have but My ankle feels so weak. at points it feels like it will give out on me and today it did when i went to sit down and wait for my nieces bus i fell on the ground. i did get up and was fine but it is so frustrating. It is so embarrassing to fall. People forget that i have CP because I function so well. When i say I have fallen they are like well everyone falls not too many that i know fall at 26 just trying to walk lol Dad is doing well no real changes to report he is still struggling with sppech and other issues but he is trying so hard that is about all for nowOh and as of september 1st my blog will be dedicated to IC awarness as it is yet another condition I am diagnosed with i hope that all of my readers enjoy learning about this chronic misunderstood condition

ggot my fitting yesterday

I finally got fitted for my leg brace yesterday yay on that one woot woot. It will have a design on it i think its puppies but im not sure either that or small teddy bears they looked liek puppies so i went with it lol and its white with the outlines on it in grey so its not too bold yet not nland either pics to come when i get it I am doing better with the loss of jake now and to answer to sheilas comment if I have not already yes he has been sickly since he was a puppy he had stomach issues from day one i was truly blessed to have him for the 2.5 years that i did h ewas a wonderful companion always knew when i need a cheer up or kiss miss him so much but he is happy and pain free now Dad is doing well also he is able to move his right leg a bit and he is trying to talk much more since being home it is a huge adjustment but it is good all around I see the GI tomorrow for six month follow up

sad day today

My beautiful baby boy passed this morning he was loved and spoiled for three good years He will be missed but never forgotten mama loves you baby

I think things are headed in the right direction now

I have the appointment for my brace fitting it will be august 21. I can not wait. I am getting really frustrated with the lack of independence that I have right now. I am still unable to take more than ten steps in the boot without losing balance. Family is starting to get frustrated because they feel that I am doing it to be lazy and that hurts so much because that isn't true. I want so badly to walk. if i wanted to be dependent I wouldn't have had the surgery. I would have let the contracture and the actual term for my condition planters flex get worse and just let them do it al. I chose the more painful route so I could remain independent for longer. I am just frustrated and beyond words for how long and hard this past year has been. Please just let me get through the next day is all I keep saying to myself.
I definitely know that no one realizes how much cerebral palsy still affects my life today. the doc at the rehab facility asked me why I feel with the boot on and better yet why I was still on crutches and he is on them due to a permanent issue with his legs as well. I am not sure what it is but lets just say it was a bit awkward and embarrassing I felt so small. i do not understand why people can not just try to understand how this is for me. They seriously keep telling me i could be in dads shoes which trust me i am thankful that I am not He is my hero. he is so strong to get through this. His strength has kept me going to get to where I want to be agian. I want my dad back It just int the same without him.
On o good note the floors are nearly done for him so he can come home Tuesday yay my dad is comming home. It isn't coming fast enough I want it now I miss him so much I have not been in to visit him the past couple weeks cause I have just been too down and i do not want to bring him down with me. he does not need it.
I have been struggling with how CP has and is till affecting me lately I know the damage is non progressive but I still do not think people understand that my level of spasticity really fluctuates with weather fatigue and just in general from day to day. the student PT tried to say that I did not have any tone in my leg when she was doing passice range of motion on my knee well she found it in the portion where the knee is bent back. they said it is mild. Well just so happens that I made sure I had enough sleep the night before lol and that i was as relaxed as possible.
I have a major fear that after this surgery I am not going to be able to regain my independence to the point that i want and it scares me really alot it has just been a tough time for me right now I am still trying to keep a smile on my face but it isn't easy sorry for the book but I just needed to get it off my chest
I have also been retaining fluid but they tested kidney function and it is still good o I am on low sodium diet and elevating my feet which ha I have not been able to elevate since Thursday because of everything going on but the good news is my kidneys are functioning

not a good day today

no fitting for the brace today and the physyatryst or how ever that is spelled had no idea why i was there except for the fitting so it was a waste of a trip. I am still to swollen for the fitting they recommended I wear a compression stocking to keep the swelling down or ted stocking. I am still stuck watching life pass me by

Appointment today was good news

the doc that i saw who is not my usual doctor said that the IUD was fine so he was not sending me for an ultrasound which i think should have been done because i had cysts last time i was checked by ultrasound which yes are normal if the ovaries are functioning which mine should be but mine sometimes tend to get a bit larger than they should so I need to be monitored for that but oh well it will be done when it is needed i guess at least i get to keep the IUD which I am praying stops the bleeding completely after a year or so. I just want a functional life back. I am so tired of choosing between what I want to do and what my body wants to do usually the body wins or else it is miserable pain for me. I have a better quality of life now than i did a bit ago but I still feel like allot of my time is spent watching moments that I want to be part of pass me by. It is a very sad lonely feeling I feel so alone even in a room full of those I know love me dearly sometimes it is just so difficult. I know I'm complaining lol sorry.
the workers started laying the new sub floors today so at least the process has been started cant wait for it to be over with I want my house back lol It is in total chaos right now I would take pictures to show the work that has been done but I think I am going to wait till it is complete  to avoid sharing the mess with all of you  dad is starting to get more verbal he is on a diabetic diet so If he does not chose the correct foods he gets less than is listed on the menu and he is getting very upset as no one as far as i know explained it to him or if they did he just doesn't like it but hey if that is how we are gonna get speech back than keep it up
I go for my brace fitting tomorrow which i am so ready for yay i cant wait until I have it so done with this air cast thing  ready to walk. I think I will need Pt though as I still can not stand in the shower every time I take one like I was able to before the surgery. i need to gain more range of motion and strength in the lazy leg as I have chosen to call  it. I knew eight weeks of non weight bearing was going to set me back but this is more than i expected.

my life is a crapy roller coaster ride right now

On the surgical front things are going better but I have the appointment Tuesday to get fitted for my AFO so not looking forward tot hat as it is still very sore. Dad is coming home soon as well which is meaning much more stress here with trying to get everything done for him the ramp is nearly finished but still need to get a shower put in for him and floors redone as they do not want him on carpeting as it is too difficult for him to navigate as he begins to walk more on his own
the roller coaster ride does not end there My endometriosis is acting up really bad right now this is only the third period I have had since having the maraina placed five months og so it is doing something I just think its going to take my body longer to adjust to it than normal or then again it may not be the choice my body chooses to accept just have to wait and see my gyn said that usually once past the six month mark patients love the maraina well its fast approaching for me and im not sure im that patient lol.
I have to have it checked on Monday to make sure the IUD is still in position as im not six months out yet and in major pain again ugh not wanting that one either haha just done with all the doctors and their torture. I know it is to make me feel better but just so done  I am also retaining fluid right now and im not sure what to do about that one I should probably call my primary doc on Monday to see what she recommends.

Improvement for me and a major milestone for dad in recovery

First off dad is now back on solid foods no more ground mush yay dad for all the hard work and learning how to swallow enough to eat solids again. It is going to be a long road but each step is one closer to him coming home. he got to have a steak sandwich for dinner tonight my aunt stopped and picked it up for him the smile was awesome . My dad is finally coming back to me  I knew he would but its finally happening. Oh and a funny story the speech therapist showed him a picture of a woman who was swimming under water but had her mouth open smiling and when she asked dad what she was doing he said drowning. thanks mom for informing me of this story haha. hes right though if u have your mouth open swimming your probably gonna drown
the good news on me is My foot is starting to improve i think. today I have had less pain but have also been taking ibuprophen which i should not be but i need relief I can not keep this up for all the time I have until i go back to see the orthopedic.

independamt steps

After nearly nine weeks I am finally starting to take independent steps no walker or crutches still in the annoying boot which is probably the reason it has taken me so long to figure out my balance but I am getting there brace casting soon I am actually excited for this one I cant wait to be able to lift my leg and not feel like I have a brick attached to it Ready to walk by myself with lighter equipment.
Speaking of equipment there is talk that dad may be coming home august 14Th and he got a brace for his right leg to help with his mobility his is way cool though the person making it knew he was a hunter probably from the likes and interests listed in his info and they made it camouflage colors green and brown so if he ever does return to hinting it will blend. I am very hopeful he will return to some sort of hunting but I am sure it will not be archery. I know some are not for hunting but it has been my dads passion for many years and he does it to help put food on the table nothing that is salvageable goes to waste I am hoping that I can get a neat brace I want mine purple and probably white if they have a pattern or something interesting I don't just want the plain icky stuff i have had in the past lol if I have to wear it Its going to be fashionable lol

struggling alot

They have finally mentioned the word home for my dad in the context that it will be happening sooner rather than just saying oh he will be home at some point I am very nervous about this but yet want him with us too. I am still having major trouble with my surgery. the boot that I am supposed to be in hurts me alot so I only wear it when I absolutely have to walk I know this isn't helping to get the pain down but I cant take much more pain its going on ten weeks of pretty near constant pain.
I get so exhausted just with the little bit of walking that I am doing My ankle is so weak now it not even funny. I know that eh surgery was successful to get the ankle and foot straight but I am kind of wondering if it was the wrong choice for me I just don't feel like things are going the way they should be some of my family expect em to be up doing house cleaning and all that already when I can barely walk from my house to the end of the drive to put my niece on the bus for her summer school program just lost for sure when will I be able to be fully independent with no walker? I am so beyond lost the good new s is the ramp should be finished on Saturday which is a big step in the direction of reading the house for dad so happy for that
Oh  and  i have an appointment with a new therapist on the second of august decided it was tiem for a change I am hoping this counselor is a better fit for me since she specializes in infertility and chronic pain I am not officially diagnosed as infertile or having fertility issues but with the endometriosis and the pollycystic ovaries i think the odds are stacked against em with that

Lets put an end to endometriosis

this is another endo awarness video I know it is not march but tis needs awarness all the tiem just like alll the other conditions out ther thanks for watching u will see me in here if u watch to the end im not quite the last person but im there lol this was made by ashley nicole for the endo the pain campaign

walker and air cast pics oh and my foot is free sort of lol

Me on the icky walker hard work but here it is for emma as promised

Got the purple cast off in exzchange for this uncomfortable air cast not liking it at all

My foot looking like a flinstone foot

the foot again looks pretty good feeels pretty sore lol I got the cast off on Wednesday which i thought was going to be awesome but turns out I am in more pain now without the hard cast than i was with it. My foot right now feels like it did four days or so after the initial surgery right now so ready to not feel pain ugh. I didn't realize that i was going to be in this much pain eight weeks post op. i do not remember my first tendon transfer being this painful but he also did a tendon transfer and Achilles lengthening at the same time not the happiest girl right now but hanging in

cast pics of the purple sorry they are delayed

decorated with crayola twistable crayons lol it all came off but she had fun that was my aim

and again

lots going on just doesnt seem to be ending for us all right now

The good news is my cast comes off tomorrow nervous excited but mostly wish my dad was home to be with me after it comes off he was so excited for the chair to be gone again and me to be walking we celebrated only having three weeks left the night he had his stroke I was so happy and he was just ready for it to be over with I let my niece paint my toenails now that i can move my toes as celebration and then all hell let go sorry but life right now feels hellish there has to be a heaven after going through all of this.
i am also currently looking for another counselor for a few reasons one being I feel that I need to be as close to home at all times as possible when my dad does come home the others I am not ready to disclose yet but probably will in the future. I am falling apart right now have not had any counseling in eight weeks because of my surgery and very limited phone contact doesn't do the trick.
there still is not much improvement in my dad yet but he is working hard to regain things there are some things that he is doing with assistance like transferring from bed to chair and chair to bed he has said a few words but they are still limited. still no movement on that side very unsure right now if he will regain any of that. all i want is my dad home and i feel like right now that is just so far away. well that is about all from my end here i will update again soon hugs to all of u

still a very long journey

I know I have not been able to fill u all in totally on what has happened but I think its ok to let u know now. My dad has been in the hospital since june 30th he had a major stroke so it has been totally hectic here and very empty with dad not home with us. I am so afraid for him still he is doing better each day and was moved to a rehab facility today. Ok so here is a totally random weird thing he was moced today and i got paper work saying that i was going to the same pplace to see the person in the brace clinic there kind of ironic huh lol Please continue to keep the family and my dad in thought and prayers.
the visiting hours at ht erehab place are so weird that i think the only time ill be able to see him is saturday and unday now so im a bit upset and frustrated right now but he needs to get better for himself and us  I feel lost without my dad here thanks for keeping up with my blog and emma thanks for the posts and yes i still have a walker and will for a bit sweetie i still have not gotten the pics up But ill try my hardest

long week finally comming to an end

this has been a very long week for all of us things are going ok with the family medical issue. He is holding his own but is still very sick  that is all i can say for now no huge changes as of yet hugs and thanks for the continued prayers

cast will be off soon yay

We have finally hit the month that the cast will come off. I have not been around alot latley because ther is soem family medical things going on i can not give full details because mom asked me not to give abny information on the compuuter so I am really focusing on keeping to her wish. But know that once it is ok to her for me to give info i will and i am medically well just alot of emotional things right now thanks for the continued suport in this battle with surgery and prayers are welcome for my family as well thank you for that

cast change tomorrow rough day so far today

I am really excited about the final hopefully final cast of this surgery going on tomorrow. I am one step closer to walking again. two months seems like forever for me. I have been having a rough day because my poor pup has an upset tummy today had to clean up his trowing up and then poo right after. I hate seeing him sick but what frustrates me more is the act that most of the time when i call a few family members they can not or will not help me but they then turn and help another family member go to appointments just so that she doesn't have to drive into Portland hello people i cant drive and im not  supposed to be up much right now either oh well its cleaned but im learning who the real ppl are that i can rely on when something does happen to mom and ill tell you they are not the ones i originally thought  hugs to all hope u are all doing well and miss emma i still plan on getting pics of me scooting and on my walker for u sweetie

hum ideas pl;ease

i have had people write on this cast so i can keep it as a memory of what i have been through but on the purple one that im going to be geting i told my lil niece she coudl decorate it any way she wasnt any ideas of what woudl show on purple besides what crayon are apreciated i know they have new colored sharpie markers but im not sure any are bright enough for the purple cast but she really wants purple  she has actually been the main cast colr choser for this surgery her and mom picked the yellow and she said she liked the putple as well and it just happens to be one of my favoraite colors

Miss Emma

hi sweetie thank you for working so hard to type that comment to me yourself good job girlie. My wheel chair is blue not a fantastic color. I like the idea of your yellow one better ill be able to walk in a few more weeks though i only have to use my chair until my foot heels you will have to show me picutures of your new chair when u get it im excited to see how has school been going so far thsi yearill also take some pictures once i gt the cast off to show u  where i had my surgery hugs and any tiem u want to write on my blog u ask mom u can tell me waht ever u want to tell me about your day ok

thanks for alll the positive suport

to  Amy and Emma and sheila and miss malayna your support means so much I am glad that em enjoyed the pics and My cast is definitely noticeable the other day actually Sunday afternoon while i was outside my cast caught  the attention of a long time family friend who happened to be driving by yes he was going right along down the road and saw it when i was sitting in the chair near my porch lol.
I have my lil cousin with me until tomorrow i will have to have her take some pics of me on my walker and also scooting on the floor so that emma can know she isnt alone in her hard work and malayna too of course

lol cast color decided

the winner is purple mom wants purple along with my niece and purple is my favoraite color too lol purple wins

i went outside today  had to scoot on the floor and down the stairs and then i got up pn my walker and walked or hopped to teh car to go to get dinner with mom i really needed to get out I qill have to take some pics of me on the walker Im not going to take picks of me scooting across the floor although it was pretty funny for us all and made mom very happy to see me wanting to get out and about and being motivated its been tough to be motivated with this op it was as painful if not more painful that i thought it was going to be especially when the nerve block that i was given wore off all at one time rather than gradually like it was suposed to I have been progressibly been feeling like being up more this past week

cast color debate

debating the color for the final cast of this surgery I have had most of the colors the colors I have not had yet are light blue purple orange and red thoughts i was thinking either purple or light blue as I'm not a huge orange or red fan the only reason i did the yellow is because it is a bright cheery color and it is also endometriosis awareness color I know wrong month but I have to live with it daily oh there is green too but that's just plain yuck very dark and blah thoughts  on color choice are good
having a rough rime right  Now the pics were taken when this whole thing was still OK and i still had spunk lol I'm getting very tired and doing the count down I only have 34 days left but it seems like so long. I miss being able to go out with my family on the weekends and just having the freedom to go into my room I can not get there in the chair  because our hallway is too narrow Mom was awesome though she did bring my mattress out into the living room so that I could at least have something of mine to sleep on I was originally going to use my nieces twin mattress but it was not comfortable at all mom said well if your going to be in pain the least i can do is make it as  comfy as possible my mom is the best seriously lol

pictures as promised more to come

this is me waiting to be taken to my foot surgery they had a heater plugged into my gown the neat stuff they have these days

This is me post op waiting to go home huge splint to say teh least he wasnt kidding lol

this is me up in my chair waiting to go to my primary doctor for a sore throat yep wonderful timing luckily it was just a virus

the new cast after removal of 24 staples didnt know they could fit that many into one foot but the good news is I already have movement in my foot that i didnt have before I can wiggle my toes never been able to do that so sucess i say even with akk the pain the doc videorecorded me moving my foot i was a short film movie star lol

cast change today

I got my cast changed today It is yellow now rather than a splint with ace wrap around it. I have pictres of both but have not yet posted any have not been in the mood but things are going good.Had staples removed today that was interesting as I have never had them before. They burn a little but its not bad. I have four pretty good sized incisions forgot to bring the ipod to thake pictures of it. My foot is straight now even without the splint or cast on it cant wait for this to e done so i can get braced and be able to walk again

one week post op tomorrow

i have some pictures to post up on here of the pre and post surgery and of the recovery thus far but im going to wait on posting them until im able to be up and n the chair more I am doing better than i thought i would be for a week out but it has definitely been tough. i had the op thusday the 24th and ended back in the Er the afternoon of the 25th for pain control because the nerve block wore off and I had only been taking one pain pill every four hours instead of the two that the doc recommended. As you can tell i did not read the directions I had someone here and still have her here taking care of me and she didn't read wither but now im on the right track with that and feeling much better pain wise.
I ended up with some viral infection and had to go into my regular doctor Tuesday which meant being carried up and down the stairs in a wheel chair and my aunts and mom dropped me in the process but luckily it was not a huge drop i kind of just laid back and stood on my head for a few until they got the grip on the chair again.
this morning i woke up pretty sic with vomiting and diarrhea my body is just beyond run down right now so that is the perfect time to get all the viral stuff going around hoping it is smooth sailing from here  on out

Recovery thus far

Recovery from this surgery has been tough and more than I bargained for. I had a nerve block which wore off as it was supposed to and I was taking pain meds as prescribed but I ended back in the Er for pain control I'm home again and recovering comfortably mow

Update on surgery

Had my surgery today went well the one thing I dud not know is that there are 2 forms of id

had a really fun day today

I went out with my friend and his mm today we had fun. i got to go to Portland headlight which I have not done in a long time  also went out to eat at Wendy's I know not in compliance with my low sodium diet but considering the circumstances I was eating it lol then we also went to cabala's in Scarborough I love the animal mountain that they have there and the fish. it is very visually stimulating for me which is good in some ways but also very overwhelming in others but I love seeing it. it and the fish are the only two reasons i like going to that store lol im not much for hunting but dad is so we go sometimes and most I stay behind because im not feeling up tot eh crowds. we also went out for ice cream yummy again probably not in compliance with my diet but i wasn't following it today and honestly have not been for a few days I know against my better judgement but i can only handle so much change and stress at one time i will be following it after surgery i promise I just needed the junk food as a freedom right now sorry that is unfortunately how i deal with some of my stresses. i tried the other avenues but they didn't work so well. I got some gifts to do in bed  or to attempt to do in bed. i am not sure how many of them i will be able to do since some are very detailed and with my vision some of that is tough but I am so thankful for the thought and for them getting me out thanks so Much D and J I really had a nice time today it took my mind off of things love u guys .
i can make a bird house once i am up and around enough to realize what im doing  i got some engraving that i can do well it is actually very simple scraping to reveal foil which  reveals a picture underneath and i got a latch hook kit which im probably going to need help to figure out how to do but ill have plenty of time to figure it out that is what I got from D and J for surgical amusement

I got some other things from mom as well hum let me see i need to go look to list them

wireless Internet yay which means that while im stuck in bed ill be able to keep in touch with my close face book friends and my blog and a few other things that I am on the Internet with so this means that if i can figure out the layout on my Ipod ill be posting here as well that is if i can figure out where things are with how small the screen is it could be a bit tough but im going to try it .
also got fuzzy posters to color love those lol i know i like alot of things that my younger readers probably do but I think alot of that has to do with the fact that it is easy for me to see.
i got a 3D Hannah Montana poster to  color not a huge fan but ill probably hang it in my nieces room or give it to one of the lil ones for their birthday
two really big coloring books with new crayons and colored pencils
oh and an itunes card  for more I books yay for that

this is some stuff i got on my own
I printed off word search puzzles to do because they are easier to see when they are not in the book form
I also have alot of other reading material that is not on my ipod  and three i books to finish that are currently on it so thanks to the love of family i think ill be well amused after surgery plus i have the TV and my music . i probably wont want to color for a while after this adventure but that's  OK because i am hoping that after this long healing period is over i can get outside and walk with comfort and ride my recumbent bike. I have a goal to lose weight have not set a goal for it yet but i know it needs to happen and that it is not going to happen overnight or at all without this surgery as you can all tell this is going to more than likely be my last post until surgery as prep starts tomorrow night.

Well i usually do this before every surgery how am i feeling
this is more for my future documentation looking back on this day
nervous
afraid
ready
happy
sad
hopeful

nervous and afraid can go in the same explanation i am nervous just because of the hospital trip afraid for me is a bit bigger of a fear and that is the Anastasia i hate the last few minutes just before going under i feel like i am losing control which yes in reality i am for a long time i have been working on that and the last surgery the experience was much better for me/
.
ready I am just plain ready for this to be done and for me to be on the road to recovery

happy because this is a step in getting my mobility back

sad because i am going to miss so much My whole summer which means at least two very special birthdays my fourth of July boat ride swimming and probably many more things as they happen

hopeful that this will be my last surgery for a long time

the interesting part is there is actually more prep for this surgery than one would think. I have to have no food after midnight yep standard practice but i also have to use some surgical scrub before hand one shower tomorrow night and another shower Thursday morning. i have not had to do this for any other surgery but It is standard practice for the doctors that I am seeing they do this to prevent infection for the patients going through surgery and also the ones following as it i am assuming also prevents transmission of infections bacteria into the OR not that they are not appropriately sterilized after lol just yet another precautionary measure.

oh and i forgot to list tha ti have my 3ds to play as well which i do not play often it is reserved for these kind of moments not that it does not get used my nephew and niece use it more than i do haha

another ultrasound update

I told u all that my ultrasound was normal for kidneys and bladder well what a shocker I got a call from the urologist this morning saying they found a small cyst on my kidney not sure which one but i have to have the renal bladder portion of the ultrasound done in two months Hoping not the transvaginal portion of it though  I am not a happy camper although the nephrologist told me not to worry I calle d him this afternoon to let him know what is going on as he specializes in kedneys not the bladder lol so i m feeling a bit better baout it not much but a little surgery is closing in fast really fast way too fast very afraid of this one ugh i will update as I am able hoping within the first week but unsure with what pain levels may be hugs to all see u all again soon

up date on last post

got the phone call from the GYN in reguards to my cysts they said it is not concerning to them right now and it is very consistent with my history of ovarian cysts if my pain increases call  It has increased but there is no point to call right now if I am still having pain when I am healed from my surgery i will tell her when i go in  and she can do a check from there

and the world just keeps sending me stuff i dont want to hear

Got a call from the urologist this mornign things are good on ultrasound with my kidneys and bladder which is good although i wish there was something showing for the bladder as much as it hurt me to have the ultrasound and is now still hurting me after the fact but I guess that is how it goes. Just frustrated tired of feelign bladder pain with no answers as to why it is hurting.
So relieved that the kidneys look good  though thank god for that one dont know what i would have done had that been bad news. the third ultrasound is where the issues cam in to play. there are several small cysts on my solitary right ovary so I was instructed to call my gyn and let them know they will be reciebeing a copy of the ultrasound to review with me so unles they can do that over the phone i will need to get an appointmetn before surgery really just more stuff to add stress to life right now I think im going on doctor strike again for a while after I have this surgery .

pre surgical pic of the feet to help ppl see what i was trying to explain about my foot being contracted

ad u can see by the top picture my right foot is in a nearly normal position and has good range of motion left foot as you can see isnt quite so well with range of motion and it is constantly in that turned in downward position its becoming painful and uncomfortable for me to walk just wanted to share this as this blog has not been dedicated to cp in some time as you can see it still affects my life even though it isnt talked about as often as the other conditions i have going on hugs to all

preop clearance is good

i got teh go ahead for my achelies tendon surgery today from my primary doctor not so sure if this is a happy moment or not but i know for sure it is a scary one. Staying healthy for the next nine days so i can have this done and then the hard part of the road comes the recovery. I am pretty sure i can handle the pain but the eight weeks in bed Im just not one to lay low for that long oh boy the good news is though that once I am awake enough ill be able to update cause I am getting wirless internet yay for that i wont be totally bored haha not alot of gaming but at least ill be able to connect to some peopel thankfully and I have coloring and word puzzles to amuse myself with music and also my nintendo 3ds thank god for christmas

Facing the fears i never thought i would have to face again

I feel so confused so afraid so unprepared for this surgery. I know ther eis only so much that can be done to prepare for something but I just dont feel ready. I was told that i would never have to face another surgery again after my tendon transfer at sixteen years old and I returned to the same doctor when my hip pain started with concerns that the hip pain was  coming from the uneven gait and tightnes in my foot and even at that time asked for rebracing his response was no that will  not help your hip pain those issues are not related to the pain you are having this was two years ago now and I had given up going to orthopedic docs after this and another episode that i will not disclose on my blog for personal reasons
Well It was again getting to the point where i was having back and hip pain pretty regularly and i was rrefered to a podiotrist for skin breakdown on my right foot thinking that the way that i was walking because of the pain was affecting my hip and back pain so i got the treatment for the skin breakdown and still am having pain sio I returned to my regular doctor and she recomended a referal to an orthopedic because i was haveing pain in more than one location and there  is not much that she could do for my muscle skelatal pain so the road has begun again.
After my first orthopedic appointmetn i was refered to a nurologist but they would not see me because they did not feel that there was anythign they could do to help as my contracted muscle was not active spasming which is what baclofen is used to treat the second  referal was to a physiatrist which was a no go for reasons i do not know i am guessing it is not something my insurance covers so my second appointment was undertaken at the orthopedic and it was decided surgery ugh
Well i have learned not to listen to doctors i will accept the help they have to offer but i know that nothing is ever guarenteed like the first doc had me believing I am feeling very afraid this round I have so many fears one of the major ones is how this is going to affect my overall ability to walk i know they are doing it with hopes that it will help but ther eis that unthinkable chance that it could make things worse what would i do if i ended up in a chair trying to prevent going into one I would not be able to stay here with my familythe other one is the eight week recovery period the last one was six weeks and i could weight bear after four i dont know how im suposed to make it eight weeks of non weight bearing only being able to get up to use the bathroom this means no computer as i do not have wirless internet oh lord lol

in response to amys comment and some more about why surgry is scaring me so much this round lol

that is exactly why i mustered up all the energy to clean my house lol i needed to take my mind off of it all. My way of taking my mind off of things at tiems is to do things that make it so i do not think about it even if it pretty much kicks my butt. i was exahusted but i know if I do not keep it up now until surgery there will be that much more to do when we are recovering thank god moms is suposed to be fast and yes GYN surgery sucks but id go back to my partial hystorectomy march 13th if it meant that i did not have to do this one
I think the hardest part is losing my freedom for eight weeks it makes for a very grumpy me and i have it in writing no weight bearing and only able to be out of bed to use the bathroom until instructed otherwhise gonna be a long road thank god mom took me shopping and got me some coloring and stuff to amuse me durring recovery the only thng that is making me go through with the surgery is the fact that I know my body and i know if i do not have it i will be in a chair with in a matter of a few years because my pain has increased alot. I pray each day that it is not as bad as the last one but my ortopedic that i had prior to this one said any tendo surgery is worse pain tahn a borken bone ugh th other portion that scares me alot is that with the endometriosis and constant sometimes severe pain that i was having before the GYN surgery is that I have built up a tollerance to pain meds. not to the point where they are not effective at all but it does take more to get optimal relief so im a bit nercous I will have to stay on top of it for the first month or so and hope for the best.
this is honestly like a nightmare come true  i have been afraid for this day since i had my first surgery at sixteen. i told mom that i never wanted my foot touched again  and honestly even for anyone to touch my foot is liek torture it does not hurt but i just react to it i hate itI will be looking for updated posts on miss emma  and also malayna
I will be posting pictures of what my foot looks liek without shoes on right now and then some after surgery and things once i get back up and about thank you sheila and amy for the encouragement and suport

ugh house is prepared im not

totally not ready for this scared very scared. ho am i suposed to do this again,. the first tendon transfer was horribly painful I am not sure i can get through another one I never wanted to feel that kind of pain again. My orthopedic that did the first tendo transfer said that it was more painful than a borken bone ugh and it is as I have fractured a bone and it is noting compared to this kind of pain. I want it over and done with I dont want to feel any of it but I know its comming I have wanted to cry most of the day today its only 2 weeks away and Im also scared because mom is going in for a gyn surgery soon as well she needs it for heavy bleeding but the fact that she is goin in for anything scares me more than me going in she is my rock the one who is here through everything prayers please. I hope everyone is doing well amy i hope that you and emma are hanging in with everythign going on comment and let me know how u r please been thinking alot about u both sheila u and malayna are awsome with your suport hoep to see new posts of our beautiful girl soon

trying to prepare the house for the major surgery commming up

this is the part before surgery I dislike the most the constant cleaning and keeping toys and everything picked up to aboid falling after surgery also had to clean my nieces room because we are going to need to bring her bed out into the living room so that I can sleep on it as i will not be able to get into my rom on crutches or in a wheelchair maybe with a walker but i doubt it as they want me on nearly total bed rest for eight weeksnot looking forward to it i will take some pics to post here as i go through my recovery they will not be posted though until i am able to sit up in a char. Very scared i remember the pain of the last one I had and it was bad. Peopel ask me which pain is worse the endometriosis IC or the foot surgery I just keep thelling them that none of them are comparable they are all very different pain and feel very different at any given time  hoping that I can get evereything done that i need to before the time comes

how much do ppl realy expect one person to deal with

i had my urolgy appointment today it went well i guess I am now scheduled for a renal bladder and transvaginal pelvic ultrasound may 16th and more than likley a third yes third cyystoscopy on august first on top of my surgery in may really i feel like i did when i was little its never going to end I just want relief from pain and discomfort and to be able to go pee without pain does it really take this much torture to get that I just feel liek its almost too much to ask I hope u r all having a good day this appointment went much better than the last ones witht eh other uros however he did not tell me i needed a more positive outlook which is good because had he said that I probably would have lsot it I just really need a break from it all sorry this post and the past few have not been positive going to try and wotk on something happy to post on next round thanks for teh suport Oh i do have some positive news i think we have possibly figured out a food that my dog can eat without throwing up its been a long haul but its been almost a month finally since he has vomited thank you somethign finally has gone right