hello to all its nearly a new year

I have gottne up to date on all my blogs that i follow recently glad you all had a great holiday sheila it was awsome to see malayna in her concert she is beautiful and loved watching her find henry the elf. I also managed to enjoy a beautiful christmas despite my endometriosis and other medical stuff. i was in quite a lot of pain but i didnt let it stop me from being with my family yes I may have been on pain medicatioon yes some people may have not agreed that i was on them or understood why and yes that is hurtful but I got through it.
This christmas was so happy and yet still so difficult for me . It is sometimes really difficult for me to be around all the lil ones do not get me wrong i love them to pieces and would not want them out of my life but sometimes especially around holidays its tough. I am waiting to ring in the new year although wuite nervous about what it will bring. Another surgery I know for sure just unsure of when i will know more the 12th of january.
Well I got soem awsome gifts for christmas i got a new i pod which is awsome when im stuck in bed.
also got a massager which is awsome for some of my pain relief
Got some more comfy pants as I call them lazy pants ha ha not that im lazy its just that streach pants are the only thing comfortable at this moment my belly is so tender and bloated from too much food this holiday and endo along with lupron yep lets just say to many factors against my poor belly lol.
also got sot a nice fuzzy blanket for my many hours that i spend in bed.
yes I am sure you can all tell that this is my life of chronic ilness speaking right now. But anything for comfort is awsome and i am truly thankful to everyone for the wonderful christmas that i had also got a new game system which is portable and very fun yes i guess we can all say im spoiled lol my favorite gift well two actually are my i pod and my recumbant bike but i am sad because im not sure when i will get to use my bike as much as i want to I am afraid that it will increase my pain but cant find out yet as we have not had much free time to set it up .
Oh and an update on the urology med not much change yet nut hoping it helps soon there isnt as much tightningin my bladder but the burning is still all too present.

urology appointment over with

this is one out of the many appointments I have comming up but it is done do not go back until febrayry she was not going to do anything for my ic until i just finally broke down and told her that i had been suffering for two years or longer with this ammount of pain and i wasnt going to any longer something needed to be done so she finally gave in and gave me an anti spasmodic med. The hardest par was her looking at me and telling me that my negative attitude had alot do do with my pain levesl and yes i know tht negativity and stress are not good for chronic ilness but i really dont think im that negative of a perso and better yet my appointment was at eight in the morning so we shall see how this goes with the medication next appointment on the list is i believe the GI but it may ntot be do not have my calander in front of me lol

found a family member with endo or who had it prior to hysto

this has been a pretty eventful month for me i was talking to my cousin on facebook and found that she had endo so I guess they are right that it runs in families so now i have someone to talk to that is a relative and knows what im going through. I go see the urologist on wednesday that should be interesting and then i go see the gi doctor on the fifth and then the ob for my final lupron shot on the 12th of january not really liiking forward to any of this but i will get through and will blog my updates after each appointment

Two years today

it has been two years to the day since my life changed greatly. Being diagnosed with endo has taught me not to take anything for granted never know from day to day what I am going to be able to do from day to day. It has taught me to enjoy the small things in life and do my best to stay positive no matter how hard things get. I have allot of emotions today from happy to sad to thankful and many more all because of one incurable life changing illness endometriosis. Why am i happy because my pain has a name and i now know I'm not crazy which i knew all along but many others thought differently. Why am i sad because endo has also forced me to realize that one of my grreatest dreams may never come true and that is to be a mom but i try and stay on the positive side of that as well. I am thankful for so many things i don't even know where to begin. thankful for the many wonderful doctors that i finally have thankful for my suport system even though sometimes they dont understand thankful for all my wonderful endo sisters and more than anything thanful for the part I am able to play in raising awatness of this conditon so hopefully we can find a cure or at least easier diagnosis and treatment options since we have to take small steps to get to the big one thanks all for reading just an annaversarry note to my endo and me helpng myself to prepare for another long but eventful year of living with it hugs and i hope to see some of my readers visiting me soon miss u guys lol.

Borthday is in a weel not wanting it

this is for many reasons, One is the two yr annaversary of my diagnosis of endo isthree days before on the fourth and it is so hard right now to know that I have been battling this official diagnosis for two years but have had it much longer just never knew the name. You know The endo is the hardest condition i live with every day. Yes people see my physical limitatios and grieve them for me but endo they can not see they do not understand and it is invisable so all in all I and the others who have endo are the only ones who truly can understand what I am saying wen i say things about endo. it is the same withe the CP but others can see that i have dificulties and seem to be more willing to accept that where since they can not see this they prefer to say that ts not real I have a wonderful suport system do not get me wrong but with this desiease i sometimes feel so alone.
another reason im not wanting to be another year older is my CP is starting to limit me as well my baklance is changing my fetigue is increasing my muscles are tighter right now than they have been in a long time. having the hip pain again waiting for my ortho appointment i just feel like everything comes crashing down around the holidays. I did get my recumbant bike for birthday christmas present so I am hoping with the use of that i can build up some strength again as it will be easier than walking because im not fighting my body to keep it balanced very excited about that after christmas yay.
You know I often have people who will talk to me and say i dont see how you manage to smile at all. i do not really know how to respond to this but honestly if those of us with chrinic ilness didnt find something to be happy for in life what would the point be I sometimes spend a few hours of every day looking for a positive but find one none the less yes there are some days that i just isolate and hide but there could be so many more so now i am going to make a list of things that I am greatful for to add positive to a somewhat negative post

my family
my puppy jake
my wonderful parents yes they are family but they are in a class all their own thanks mom and dad for being so wonderful.
My wonderful primary care doctor and gyn
my counsoler
and the fact that i have had 26 years to learn and grow and realize what really matters to me and it is not meterail things lieke with some it is the people that i surround myslef with oh yes and I am so thankful for my endo sisters and also my fellow blog followers sorry for the long post its just been kind of a trying day here hugs to all of you

happy thanksgiving

Wishing all my readers a happy thanks giving i hope you all enjoy it as i plan to lol This week has not been the best for me but isnt the worst either for sure. I cant seem to make it thorugh a holiday without feeling yucky the fourth of july my endo and bladder were bothering me now my hip is bothering me and I have got one nasty cold going on here. On to brighter things i have been keeping myself busy whie trying to get enough rest to recover from the joys of this cold i did some cooking for thanksgiving I made chocolate fudge bananna bread cranberry bread and cooked an apple pie yay I love to cook when im up to it didnt realize how much i missed it
not sure how much time im going to spend out of bed today but at least some is planned again happythanks giving and enjoy the dai

getting close to my breaking point here

hip is down right horrible today had my appointment and have to see an orthopedic oh joy how did i know this one was comming. So nervous hate this whole process. Just so tired of the ups and downs of all of this but still trying to remain positive.

another set back

My back has been bothering me for a few days now and unfortunately my hip is very sore again. i go to my primary doctor tomorrow but im so afraid to tell her about my hip and back pain. i know she will take me seriously that is not the issue the issue is i need a new orthopedic doctor if she feels i need to be seen by one due to some issues that occured that are beyond my control but successfully made me never want to go back to the ortho I had before ugh so nervous and afraid to tell her.
She is still kind of new to my case and may not know all the information that i have doccumented on my orthopedic status she does know however that I have Spastic cerebral palsy. i am just hoping she is willing to try a few routes of treatment before refering me to another orthopedic so nerve racking. My last primay care physician wanted me back in AFO'S and my old ortho refused so i shhall see if i hit that road again ugh hate having cp because of the things it does to my body. All the extra stress and strain. I have been more active with less endo pain so now here goes the joint pain again ugh cant seem to won but trying to stay positive and im also afraid that they will request my records and see info abou the hip issue last yr and then ill be facing another injection of cortisone or surgery ugh fear sucks

jake had his vet appointment today

My boy had his ears rechecked this morning. The doc said we are doing a meraculous job as his ears are 90 percent clear in two weeksi guess it usually takes longer. Any way only one week of treatment left for him thankfully. She said she can see all the way to his eardrum this time and the canal is nice and open which is good its not inflamed he just has a bit of depris left in there.
also i will be participating in a genetic study in hopes of finding easier treatments and diagnosis options not just me of course many of my endo sisters are doing thsi too im very excited on this one got a message saying the kit is on its way to me yay just have to wait for paperwork from the hspital and then get my op report and ill be good to go on trying to put an end to endo hugs to all of u

still hanging in there add back is a good thing

i said in my last post that I started norethindron for addback for progesterone to help with hot flashes and since i started it Ive had significantly less hot flashes. I have had a few more pains but that can not be directly linked tot he lupron its on the left side so I am thinking my increased activity is pulling on the scar tissue(adhesion) that I have on the left ovary ugh had to take two tramadol today but its the first time in awhile it is so nice not to have to take medication for pain every day. i still get neasua and significant cramping when i have to have a bm which is annoying

happiness and sadness all rolled into one

had another ob appointment today and brought mom with me so she could get questions answered. she asked what questions she had or more like I asked one for her. She asked if there was anyway to stop the endometriosis and the answer I already knew was no. but hey I guess just hearing it from someone who works witht he femals system works. Then she asked about the dreaded H word actually i btought that one up for her so that i did not have to try and explain it yet again. So tired of hearing it. She gace oll the usual reasons such as she is not over thirty and she has no children and if she has HRT the aendo will continue and with No HRT she would get bone loss and the last thing she said to us was a total shock to even me she said that if she did a hysterectomy with no GRT that i am at significant risk of heart desiease whoa stop nop need to hear no more scare the crap out of me ill take my pain rather than be afraid that im hoing to have heart issues ill keep at least some of my femal parts.
I go back for another and yes my final lupron injection january 12th and from there we will plan the surgery date oh and yes surgery is definate after this round of lupron. She said that a lap was a good idea but i was still hesitant but after today I guess it is an official part of our plan the joys of a chronic life long condition tryst me these are the times where i wish i was older. Mood swings are bad hot flashes are bad night sweats are not so bad yet ive had a few but i also got my add back therapy which has nothing to do with estrogen it is progesterone only as endometriosis thrives on estrogen. Well thats my update for today so a very emotional day reality for some reason hits harder with me when the docs are talking to someone else and im listening to them talk ugh well wising everyone a happy day

30 things

The illness I live with is: I have a few First is cerebral palsy visual

impairment Endometriosis IC

I was diagnosed with it in Endometriosis on december 4, 2009 IC on May

27, 2011

But I had symptoms since: Endo since the age of thirteen and IC on and

off since my first UTI around the age of twelve

The biggest adjustment I’ve had to make is:learning to take the cues from

my body and listen to what it is telling me

Most people assume: Im just using my ilness to be lazy

The hardest part about mornings are: Getting motivated

My favorite medical TV show is: hum not sure watch all shows on

discovery fit and health when im into watching tv

A gadget I couldn’t live without is: my heating pad for pain and my fan

for the next six months lol

The hardest part about nights are: finding the comfy position to sleep and

getting to sleep

Each day I take __ pills & vitamins:at least five many dats more

Regarding alternative treatments I: havent tried any yet

If I had to choose between an invisible illness or visible I would choose: I

don't need to chose have both and neither is any easier to live with.

Regarding working and career: don't work because of multiple medical

issues and too much pain.

People would be surprised to know:

The hardest thing to accept about my new reality has been: sometimes i

can't do the things i want to do because im not feeling up to it and this is

here for the rest of my life or until menopause.

Something I never thought I could do with my illness that I did was:make

a difference in many peoples lives by sharing my experience

The commercials about my illness: ha ha they are nonexistant

Something I really miss doing since I was diagnosed is: not being able to

go for daily walks

It was really hard to have to give up: used to do alot of babysitting for

friends till I was diagnosed then had to cut back because of the unknown

of the pain and surgeries.

A new hobby I have taken up since my diagnosis is: building jigsaw

puzzles and writting

If I could have one day of feeling normal again I would: just spend the

whole day with everyone and enjoy every minute of it

My illness has taught me: That I can over come many obsticles.

Want to know a secret? Endo has helped me to make many friends

But I love it when people: take the time to try and understand the daily

struggle i go through because they learn about endo and also others

struggles because I am ot the only one

My favorite motto, Never give up live each day like it is the last

When someone is diagnosed I’d like to tell them: hang tight its a long

journey but you will get through and you are not alone I thought i was for

a long time.

Something that has surprised me about living with an illness is: How

echausting it is

The nicest thing someone did for me when I wasn’t feeling well was: Just

sat and listened and just let me cry with no judgement.

I’m involved with I do my best to spread awarness of endo and iC through

support groups and writting about my expereince and also posting things

to my blog that pertain to ebdo and my experience

The fact that you read this list makes me feel: happy to know that others

do really take the time to read about others struggles thank you so much.

thanks

Thanks for all the positive suport sheila and amy happy to finally have so good news to share although the pain relief may be very short lasting but the six months that i will have is totally worth it for me. and unfortunately i am hoping for another surgery to follow yes sad that i am hoping for one but it is the only way to remove the endometriosis that has regrown over the two years since last surgery and I am majorly hopeful that they can take out the adhesion that is on my left ovary causing it to stick to my pelvic sidewall and uterus and unfortunately that will more than likely end in a partial hysterectomy with removal of that ovary and tube as it is very damaged and non valuable to my future baby making days it does not ovulate now and when it does it gets a large cyst on it when im not on birthcontrol called an endometrioma a cyst of endometriosis that fulls with blood ouch

update for teh past week or so

Things are going fairly well for me all things considered. Still having very little pain yay thankful for that. I had to take my dog to the vet on tuesday found that he has a double ear infection they also did testing to try and figure out whats up with his throwing up he does not do this all the time but thyey need tomake sure that he does not have an underlying issue. he goes back on november 8th for the results of those tests and a recheck of his ears to ensure they are clear. Lets hope they are so we can have a comforttable happy boy again.
I go back tot he GYN on the first and will update on that as well just trying to keep tabs on whats hapening with lupron and keep my mind refreshed my memory isnt so great on the lupron hope all of you are well.

emotional ups and downs of lupron have begun

this is the part of lupron that I really hate. the mood swings are starting. Im surprised that they waited lol usually i get them as soon as hot flashes start. My emotions are like a rollercoastr one minute im ok then ill start to fel down or upset or just plain iritable. the joys of menopause ore wonderful. Is it worth it for th pain relief yes right now it is for sure i just hate the ups and downs id like to say im ready for treatment to be over but im not I want the pain relief i have more energy right now than i have had in some time ive been staying awake all throughout he day for at least a week now so it feels really good and i can spend more quality time with my niece but the mood swings do pose a challange cause sometimes i get kind of snappy and she doesnt understand and i dont mean to be that way but it just happens.

another video courtesy of my endo sister barbra hull jacobs

endo awarness month is march but im battling it now along with so many other there is never a time that this does not affect my and so many others lives thanks for watching and please feel free to sppread the awarness as well they are on youtube

endometriosis suport vvideo

this is to help spread awarness of endometriosis which for me is the hardest thing to live with each and every day thanks for watching I did not make this video but shared it from a group that i am part of thanks again for watching

three days and counting

hot flashes are still horrible but I am still counting the days of no endo pain i am greatful for the three that i have had thus far. However im realizing that a good chunk of what i was blaming on endo was my bladder waiting for november first so i can talk to the GYN and see if she will give me a perscription for pyridium until i can see the urologist again in december. i dont want to go unless i know it is the specific person my appointment in december is scheduled with cause the first doctor well nurse practitioner was not kind at all so im afraid to call to try and schedule an earlier appointment. i should not have to feel this way but it is funny how certaain doctors can make it that way. But thus far the lupron is still my best friend and worst enemy best friend for pain relief but its evil with those darn hot flashes. Very excited that I can more than likely take my niece and nephew out trick or treating with my aunt with little pain this is making me want to cry not because im sad I am so greatful just to geel better I can not wait to see my guyn in november to tell her i am pretty sure she will be more than a little happy to hear the good news

exhausted already but good news

I had my foot appointment follow up this morning at 8:40 this morning good news is no further mention of heel cord surgery and no further follow up needed for the foot. Now to cover the rest of the title i am totally exhausted I slept for a half hour total all night last night because my hot flashes have begun. Boy I forgot how echausting this truly is I need the pain relief and it is worth it for the relief but it is certainly going to be an adjustment for me againso neeless to say I did not make it a full two weeks this time vefore the second phase of lupron began this is good cause i was not sure how long I was going to be able to stand the increase in pain i am glad that the hotflashes are here cause that means hormone levels are reducing and pain will too yay.

Kind of startng to feel like this is going to be the longest two weeks of my life

I know it has only been one full week today since i got my injection but I dont know how much more i can take this is emotionally and physically draining. it hurts right now more than it did before hand so i am glad that i have medication that I can use and that my doctor knows me well enough to know that i do not misuse it. i just want to start feeling better I feel really sad and kind of like im starting from the begining of the road agian.
i am so thankful that my gYn is so supportive and will stand beside me 100 percent in this fight. some of my family does not think that endometriosis returns and they say that I do not have it anymore or that i didnt to begin with and my GYN flat out told me to have thos members come to my appts and she will talk to them about it but I have my suport team which consists of mom my sister and a few others I dont need the ones who dont believe me and dont see how much i fihgt just to get through a day. It does hurt cause they are family but i know that not everyone can understand chronic ilness she said something about getting me some pics of next surgery so i hope that she does that so I can see what has been hurting me for so long now. i just want to be me and i feel so lost right now I put on the happy face but deep inside I am so afraid there is so much to think about every single day I dont think anyone can truly understand what endometriosis does to you unless they sufer from it themselves. I know i have suport here too and I am thankful for that.
Endo has taken so much from me and i do focus on that alot and sometimes that isnt good but some good things have come from it too. I am becoming a stronger more understanding person because of it I have met the most wonderful caring doctor who treats me with dignaty and respect and i have learned well how to advocate for myself when i do not feel I am getting what i need so endo is a curse and a blessing all rolled into one well I hope this didnt fill you all with negativity lol but just how im feeling lately.

Five days in and the pain has begun

As i wrote before there is an increase in pain before the lupron starts to shut down hormone production I am currently in that phase of the medication right now and the pain is not fun but luckily I know it will only last about another week and my doctor was good about filling my ibuprophen and tramadol perscriptioms so I can be comfortable not that everyone needs to know this but I am also currently in a bleed which for me is not uncommon with the first months of lupron hoping it will be my final one for a while so that is my update thus far and sorry for TMI but I want to keep record of my tough journey through my second round of lupron

lupron yuckies have begun

I am not having any menopausal or pain symptoms yet but have been very queazy and blah since like four hours after my lupron injection. tis is not new it happened to me after the others as well but they told me that I had a virus but i dont think so I think i get one of the less comon side effects of lupron. Or it could also be from my flu shot but i dont usually have much reaction witht hem besides a little fetigue so i will be bringing this up to My gyn on the first just to let her know but im not too concerned about it the second round just confirmed that the nurse was wrong and i didnt have a viral infection last time.

Lupron is in

i went in this morning to get my lupron injection and the receptionist knew me on a first name basis already lol only because it was her whom I talked to twice when i was trying to arrange transportation. i did get good news this round. it will only be two injections because each one has three months worth of medication in it. my first round I had a 3.75 injection every month so I am glad that i can have only two injection it burns more but it is lees needles which makes me very happy My nex appointment is november first but I plan to doccument my second journey on lupron here and I already know it will be a rough one so I thank all for their suprot in advance the pain will be begining to increase within the next few weeks because when they administer the first injection of the series the lupron has an inital stage where it increases the ovaries production of hormones but then it shuts them down for the remainder of the six months which is when the menopausal symptoms begin i will doccument more as it comes and again thank you to all of my dedicated readers

another OBGYN update

My doctor is the best. she had the practice call me the friday before she was due to start working there and get me an appointment for Monday which was OCtober third. So I am now back in the regular comfort of my own doctor thankfully. Things went fairly well being basically as i expected. We talked and decided on another course of lupron which is not my best friend but if it is going to take the pain away for a time than im in for it.
the interesting part was that the nurse came out to get me and said welcome to generations this is your first time here right but not the first time with Dr P i hear u guys go way back I just kind of laughed apparently she briefed them on me but hey thats ok it makes for a much warmer welcome. I got the routine sruff done and a flu shot and tomorrow the lovely joy of my first lupron injection will great me at 8:30 but to clarify i have had one course of treatment with lupron this will be my first shot of round two. I will be on it for six months yet again and then we are discussing surgery because she wants to see if the lupron will shrink the endo to make it easier to remove lets hope it makes something easier well that is about it for now i will document this round of lupron better han I did the last Im not going into it blindly so at least i know what im in for Im just happy tha tit will stop the pain for a while again as long as it works the way it did the first time that is.

Phone calls keep comming docs arent my friends right now lol

I got a phone call from the Ob clinic the other day and the nurse said that the ob that was taking care of me talked to my usual ob who is not practicing right now and my regular doc told her it was fine for me to do another six months of lupron. this being said after i specificly told the gyn that i wanted nothing more to do with lupron. So it is sounding like that is going to be the teatment of choice or keeping my pain but we shall find out in october they wanted me to go in and start the treatment the other day and i told them no i am waiting to talk to my regular doctor in hopes of them having another option.

OB apointment update

As promised here is the OB cisit in a nut shell. i saw doctor this time which was good. We discussed my options wheich may I tell you are few and far between. They told me that they were willing to do another lap but as far as removing anything they would not know until they were in thre so i declined that option and the other option i was given was lupron again and also declined that. The reason being I had horrible side effects on the lupron and I am not subjecting my body to another surgery with out knowing that it is going to reliece any of the pain I am having. they told me they would not want to be in my position at my age well of course I already knew that one and told me that narcotic pain medication is not the solution which I already knew that one too. So all in all not much was done and I am currently waiting for my regular OB to retyrn in october so I can have a discussion with her because he offers more support and insight into what she feels would be most helpful the two docs the other day just totallk left it all up to me i felt so lost and alone it was almost unbearable. The only matter of fact answer I got is not total hystorectomy until at least thirty five really another ten years of this agony Im gonna need alot of suport for sure well thats about it for now hoping I get better news in a few weeks.

is it thursday yet

I am waiting for thursday really need to see the OBGYN the pain has started yet again. The cycle has been getting shorter and shorter. I just hope that something can be done soon because i do not want this pain any more for a while even if it is just a change in medications for some relief. Im not so sure i am ready for surgery again but i guess if that is the only method for relief than we will go for it. I am just struggling to understand how I am in this much pain again after such a hard long road to get six months of medication in hopes of relief only for it to return already. i feel like i am becoming lost in the endo battle again but i will find my way out and through all of these struggles.

welcome the month of september as IC awarness month

as most of my followers know i have IC intersistial cystitis. this is a very painful and debilitating condition. it causes me and many others to suffer with pain pressure freequency and urgent need to urinate. I have had a lot of bladder infections in the past but in recent years I have had symptoms with negative urine culture results and that is when it became evident that I needed further investigation into what was going on. My OBGYN did a test called the potassium sensitivity or potassium chalange test. this is a very painful test for an Ic patient. Two different solutions are infused into the bladder via catheter one is regular water and the other contains a dilute potassium solution. In the normal bladder people should not be able to tell the difference between the solutions but in my case i was imediately able to tell my doctor which one contained the potassium so it was determined that I have IC. this desiease is very contrivertial and there are still some doctors out there that do not believe it exists but I am a survivor of this condition it is real and it is painful it is not in our heads we know our bodies and how they should feel bladder pain is not normal. i hope that this helps to spread awarness I am not a medical professional and i am in no way trying to be I am just trying to spread awarness of a very painful condition thank yyou for taking the time to read this post.

The Er loves me ha ha not really

ha d to go to ER again on friday because of pain. I was there for a long time but got my pain under control. i had my appointment on monday at the clinic but ended up seeing a nurse practitioner because the ob i was suposed to see had an emergency so they just basically gave me more meds and told me to come back on the 15th of september so ive been laying low again.
i am so upset because I could not make it to october like i wanted to so that i did not have to see different doctors it is so hard when that happens and it frustrates me alot. i feel so lost right now and so confused i do not understand how my pain increased so rapidly. this desiease is so unpredictable and painful it is so draining Im just feeling really down right now But i can still say that i will be ok This desiease may get me down sometimes but it will not keep me there forever. For any one who does not know about endometriosis you can comment here and i will answer questions as best i am anle.

very frustrated right now

the cream is helping which is a good thing but now I am spotting on my birthcontrol which isnt really a good thing and i have been in pain now for nearly two straight weeks. I made an appointment to see an OB on monday i dont know who it is but something needs to be done to help me weither it be until october or whatever i dont know i just need it to go away for a while again. i have not wanted to get out of bed now for over a week and it is frustrating me and everyone around me who hate seeing me like this. I am not sure what is going to be done but we shall see if anything im not really getting my hopes up here at all. Very nervous and just wish my ob was back already i hate this well im going to go take my daily meds and rest since i feel horible i will update when i get back on monday provided the weather cooperates

finally got the cream yesterday

I finally got the cream i need yesterday over a week after my appointment I have used it three times and already noticing a difference in my foot. thankfully. I am not looking forward to going back in on the 14th of october I dont want to discuss surgery at all. I will keep updating as things progress with my foot and if any other interesting things arise

update on the foot healing process

I think i wrote this before but Ill start from the begining. I am suposed to be using a cream called urea on my foot to help break down the dead skin that is calloused and help promote the growth of a new layer of skin. When i went to drop the perscription off on the 15th which was the same day that i had the appointment they said that they had to fax the doctor because it required a PA. I called the doctors office and spoke to the Doctors wonderful clinical assistant who said she had not recieved any fax but would start the prior authorization process by filling out the needed form. I called in again on friday to find out what had been decided and the PA was denied because my insurance is only willing to cover a 20 percent cream rather than the 40 that was perscribed. So the wonderful assistant had the doc change the perscription strength and re send the perscription to my pharmacy. i called to see if they had gotten the fax and luckily they had but also found out that the medication is not commonly perscribed so they have to order it but as far as I know as of monday i will finally be able to start treating my foot with the medication the doctor wants me to use for the next two months. i find it amazing what people have to go through just to get the medications they need because of insurance regulations it gets quite frustrating.

a wonderful day yesterday

I had a wonderful day yesterday. My best friend came up from virginia and when she got to maine we went to see my other best friend who is currently in a nursing home because she has severe cerebral palsy. I saw my niece and nephew again my friends children from virginia. over all it was a wonderful day I enjoyed my time with my two best friends and know what a true friend will do for eachother .

ugh doctors are frustrating

Well had the foot specialist appointment today. It is not a very happy appointment ending. He does not know what is going on with my foot and he said that i may need surgery to lengthen my heel cords. Ok here we go with the blog turning tides back to the cerebral palsy aspect of my life. I thought that after i stopped growing that I did not need any further surgeries. but he did say that dreaded word I am really starting to hate the routine of doctors and wanting to cut into me I am so frustrated.
he gave me a cream perscription for my foot and I have to go back in two months. the cream requires PA which means i have to wait for that and then more than likely wait for the medication to be ordered so ya it will be a while before i get to start that. Teh doc that I see is only in on monday and fridays so we shall see I will call in on friday and see if anything has been done.

appointment for my foot on monday

i got the call On monday to schedule my appointment for my foot I go there on the 15 of this month to have it checked out. it seems to be doing much better and healing now. I hope they dont need to scrape it down or anything but we shall see. I am not feeling well right now but I am going to try and wait it out to see the ob abd yes that is despite my doctor saying to call and get an appointment well i have to go for now

my week with the fam and update on things

I had a really good time with my aunt uncle and cousins. I had my puppy too. We just hung out and stuff really not too much action but we did go to a few stores. We went to hannaford wal mart and big als. Everything is so far to get to from where they l8ive lol but the scenery was nice. I saw BIW and got to see pieces of the new destroyer they are building right now.I came home yesterday and am glad to be back though I missed my other dog and mom and dad.
As far as the foot goes it is getting a little better but not much change. I am still waiting to hear from newengland foot and ankle for an appointment to see if anythign needs to be done with it because my doctor said it is too large of an area for her to deal with.

I did have my docs visit yesterday for ny knee and foot and a few other issues. I have tendonitis in my knee. My foot has really bad skin breakdown that is gettin worse rather than better. I have had the skin breakdown since I had my serial casting and the orthopedic said that it would go aay with no treatment I think that was around seventh grade or so for age purposes and it has bot gone away at all it has gotten worse so now I have to go to newengland foot and ankle for the issue. I never showed it to any doctors because i did not think it was a huge deal till it just got to the point of being uncomfortable.
she also told me that she feels that i need to see an ob between nw+ow and october but I am not sure when i will be making the appointment. She told me that I am at a high risk for infection in my foot so I have to keep a close eye on it and keep it cobered with bandages and cream well i think that is about it oh and i will be sparse until at least friday I am visiting family in dresden Mills from now until Friday having some me time with just my puppy it feels so good to just be spending time with him but i do miss his brother already.

going to the Docs monday

I have now been having knee pain for a week. I am at a loss for what is causing it. It is however on my left side which is more affected with the CP but I did not twist it or anything It is a burning pain and it is driving me crazy its not like the burning endometriosis pain isn't enough lol but again I will get through it. I just hope that my Primary doctor has some ideas on how to relieve the pain I've done heat and have been taking my mild pain meds which are helping some but I feel that she needs to be informed and that i need to get it checked out to ensure that my long road with CP is not causeing early aging to set in because from all information that have read aging in CP patients can start as early as thirties with arthritis and things and it is much more common in the more ambulatory patients. this research is still ongoing and i don't remember exactly where a read it but ya I'm kind of depressed to learn this ugh just another hurdle for all of us to overcome. I have had a lot of knee pain in the past but it has now been over a year so I am really not sure why it is happening now. This is really becoming exhausting.
On the endometriosis front things are not looking much different. I am hesitant to leave too far from home because of the pain.
On the bladder front with the IC it is bad because it Flares when my endo is being mean . I am really tired right now and have been going to bed really early because of it

so ready to crush this desiease

I hate you endometriosis you make me miserable you make me hurt you make me cry you make me feel like I am going to lose my mine. But I want you to know that I will not cave to you I will beat you i will continue to enjoy my good days you will not take everything from me. You may make it so im not able to do things sometimes but i will beat you I may go through hell trying but one day i will be a part of makeing sure there is a cure foth youu because you are too evil to continue to affect us the way you do I hate you endometriosis you have robbed me of so much the past two years and so much even befoore that but I could not blame you because i did not know u

a very hor painful but good day

I finally managed to get out of the house today for more than a doctors appointment. It felt good to be out even though it was a bit tough. I wanted to take a bath while i was at aunties house cause we don't have a tub here at home but my niece decided she needed one more so needless to say she won the battle lol
I am so frustrated with being in pain and stuck inside most of the time. It is not only the pain but between that and other restrictions with transportation it tends to get a bit tough. I probably will not be going out except on weekends for a while now it is actually tiring to be out of the house in different enviroments now if that makes sense to any one.
There are so many frustrations that i cant even really explain but I am just glad that i was able to get out of the house for the day with less pain. i think i forgot to post on this but I also went to a birthday party on July 16th that was a bit hard because i was pretty uncomfortable and knew i wanted to stay but could not take meds until bed but other than that I really enjoyed the birthday because i had not seen those family members in a long time so I guess all in all july has been quite an eventful month despite pain .
the pain that i have right now is like a constant match being lit on my female organs not that you all need a description lol

ugh i dont think this bought of pains going to calm down like it was before

Im still in alot of pain and have been trying not to take meds for it . I am not so sure i will make it until october any more. I am nervous on making an appointment though because I was not thins bad when my GYN left. I am struggling with the fact that it has come to being in this much pain in justthree months time it has been progressing isnce may I saw my GYN in june. I told her that i was having increased pain and stuff and she told me that if I have problems between to make an appointment but in other ways i dotn really see the ideal solution making an appointment with someone else since all they will be able to do is perscribe more meds and send me home im just confused. and unfortunately still in pain. I am wishing my ovary would just fall out and yes i know that is not gonna happen but i can wish right!!!!! I can tell everyone that this and IC are the worst ilnesses that i live with daily. ugh they are not easy and there is no way i am gong to uro until she is back from leave id make an appt woth the GYN clinic before risking seeing the first uro I had lol. Sorry this is just turning int a huge vent.
I feel really alone right now but I guess that is because I kind of am as no one in my family has IC or endometriosis they try to understand but just can't fully well i guess im going to go rest for a bit

this is a nother good song

this is a song that I found the other day and ive been listeing to it I need something to keep telling myself i am a strong person I have been feeling weak and lost lately with the pain comming back. I know that everyone says i am strong but i think we all have our moments where we dont really know where the strength is. right now i just dont feel so strong but ill get rthrough it with extra suport and wonderful people I always do hugs to all who are here who read it means alot to me i think I have also found what i ant to do with my life. I want to spread awarness of all of my major medical aissues that would be the CP the IC and the endometriosis any Ideas on how to begin doing this would be awsome i know i am doing well with it here but not too many people give imput with questions or anything dont have alot of trafic lol but i love my fellow followes dearly. I would love to do it publicly somehow but where to bgin meaning i want people to hear my voice not just see my words thanks for your imput i just realluy feel that i have found my calling in the world for now and i want to go with it I feel that god put me here to help others who need to know about or are suffering with any of the conditons that i have

To do or waht not to do that is the question

I was advised to make an appointmetn with an ob at the clinic that i was going to and technically am still a patient at but I am hesatant because i do not know any of the GYNs there now the three that I saw previously have completed their residency and I am going to continue to see my GYn when she returns to practice in october and I am sure that nothing is going to get done besides pain meds once i explain this to the doctor that i will be seeing so I am kind of debating do i make the appointment or do I put on my stuborn face and try to wait it out if it acts up again. It not an easy choice for me. I thought i was going to do OK until octoer but the month of may was bad landing me in the ER. June i had my Cycle and was amazed no Er trip but I think i ruptured a cyst the other night because i could not walk and was really sick. this desiease or condition which ever yerm fits is so frustrating and unpredictable and i don't know which choice to go with and ultimately i know i am the one to have to make the final choice. i just feel so confused.

My regular OB said partiol hysto if I got to the point where pain meds are no longer enough. right now thee enough when i dont want to function or need to sleep all day thats not my style i like to be involved in things. I am just struggling to accept that it is comming back to this point so fast. I am so afraid. i sometimes wish that someone else could be me just so i didnt have to make the choices shall we say stress and anxiety lol

endometriosis is winning again

sorry guys i managed a positive post last time but tehre is not much positive right now. i had to take another trip to ER again last night for pain. it was so bad i was throwing up and could barely walk. i am not happy because now i have to make an appointment with another doctor at the clinic and im not going to be able to hold off until october like i wasnted to see my regular Ob.
i don't understand why this condition does this to me so often well i do but still struggle to understand why i can't just have some relief again. it is so frustrating for me. i feel lost and angry right now I feel like between the IC and the dndo I am never going to have the freedom i used to If i am not in the bathroom or in pain because of the IC than im in the ER or on pain meds because of the endo.
Everyone says try to look at the positive of everything but really there are not too many right now. i am typing this struggling not to fall asleep because of the meds I am o. The OB says she would rather have me on meds than to do the partial hystorectomy surgery but my mimd feels so cloudy on anything stronger than the tramadol i was taking that has apparently stopped helping my pain. i dont take it much but i guess with each dose the body becames more used to it . i just hate this. i never dreamed id be in this much pain at my age i figured id be enjoying a full life but it feels pretty empty right now because endo and IC are ruling it

had an awsome fourth of july

I went out on a friends lobster boat for the fireworks in portland i have dont this once in the past and really enjoy it when i am feeling up to going. the display was nice and it was very peaceful out on the boat. i had a wonderful time.
Not to spoikl my wonderful time but as i said before this blog is suposed to be about my life with cerebral palsy so i am going to tell u all how my CP affects my boat experience.
First of all i need alot of help walking up and down the docks can not hold my balance to do it on my own.
i need exrtra help getting into and out of the boat as my muscles are not strong enough for me to climb in and out on my own althouugh i am finding ways to do most of it on my own. i sit on the edge of the boat and swing my legs over and then have two people help lift me to a standing position.
I can not stand at all on the boat while it is moving have absolutely no control over my balance if i stand too afraiid to even attempt it although i did have a victory i stood on the boat while it was stopeed and the waves were rocking it a bit couldnt do taht even the last tiem i was out on it.
all in all a great but tireing niehgt thanks to my wonderful friends who are willing to drag me on their adventures love u guys so uch i dont want to mention names here because i onlyu know a few who actually read and i dont have consent to use names but thanks for reading and now u all know that i too have times where i am not independant and that is one big reason i dont stray too far from hme lol there are not many who know how or are willing to learn how to assist me

having a rough day today

First off thank you amy for all of your comments but unfortunately im not feeling to much better it seems to be slowly but progressivly getting a bit worse with the pain in my ovary. this is right now my biggest struggle. I have basically woken up each morning since the befgining of may with ovary pain some days its worse than others but it is always there again ugh. I am leary abut another surgery i have had my fair share
although only one has been for my CP that was a tendon surgery when i was 16. I am just not so lucky with other medical stuff lol but hey ill get through with suport from everyone if it comes down to needing the surgery I know i have a wonderful suport team from all over. I have a great family which really helps when you have so many issues.
I thik I am more just frustrated that the lupron did not work for as long as i had hoped it would and for amy i dont know if you have read that far back int my blog as there is alot to it but lupron is a drug that is given by injection that puts your body into a temporary menopause state had that back after my diagnostic surgery to help to shrink the endometriosis as it is estrogen dependant to grow and have felt pretty good up until this may.
if you already know about endometriosis and its treatments sorry for the extra rant but i dont like to put the name of a medication into my blog without all of my fellow followers knowing what it was for i dont like to be confused lol so i try not to confuse others.
any how the pain has been pretty bad today it is making my left side and leg hurt but I am trying to push myself throgh the day the only relief that i get is if i take meds and i hate taking them because they only work for a couple of hours and im just not a med fan emma i feel you on this one totally they are yucky amd for amy i am glad to suport u and emma she is beautiful and you are a wonderful mom ans to sheila how are you and malayna doing

this post is for amy and emma

have to do this th hard way cause for some reason i cnt post to your blog today but wanted to say that I love your pictures of emma with daddy on the trike and that I looked into that justin beiber spelling may be off some that you said pretained to emma and listened to it and wow you are right it pretains to all of us with cp i put it no my play list thanks and emma can listen to it any time she wants when u r on if u follow my blog she looks so good on her trike

mor on the dogs

i got the crate back monday and they were excited wish they were not so camera shy or didnt hate it so much would have taken a pic of them in it my black lab barks at the camera and just anout anything lol hes a pain sometimes. Bu any how now that i have the crate back all i have to do is say bed and walk toward my room and they both get in no problem i used to have to give them a treat so i guess they just dont like wide open spaces at home by themselves now when it come to running of they dont have any issue with doing that lol they tend to like doing that too me ha ha they are brats for sure. Trying so hard to stear from medical stuff right now just need a break to think on something else. i cant believe this weekend it the fourth of july but im glad it is each day that passes is good for me i have been working on a jigsaw puzzle since monday as wwell didnt get too far with it cause my eyes get tired but its fun when i can manage to find pices lol other than that not much is going on with me besides medical and i dont want to talk on that subject right now lol im so done with it for a whileit is just getting to the point of too much stress with it right now and my goal is to live with as little stress ans I can
i hope everyone is enjoying their summer vacation and getting out of the house i havent much with my pain but im enjoying the things i can do that are positive and trying to keep up beat well i gues i should get going and find soemthing to do around here rather than computer time

something totally off of emdical issues for once

i had a really good day today. i am still having pain unfortunately but i dont expect much of a change but thats another post all together i said this one wasnt about medical so im gonna make it all on a different topic. One of my many kidos in life had her seventh birthday today oh my goodness how tiem flies. We got her a water slide and a scooterand went to her party. I saw her two sisters and brother too. her youngest sister is a month old amd i had more cuddle time today.
the down fall is when i got home after beign gone for three hours my dogs had destroyed the living room I am not goint to indulge in how they did it but needless to say it was a mess. they did it to me the other day as well when i went to my aunts with the fam for dinner ugh so needless to say the dog crate is comming back from aunties house and they will be in it when i leave I will not feel bad about it any more. I tried to let them have freedom and have run of the house and they can tbe good its either that they find new homes and i cant bear to have that happen even though they destroyed my stuff the other night and this time i still want them for company I am way too attached to part now after a year so yep they crate it is well that is my weekend.

how can people forgt about Cp

i was reading somones blog the other day and it said something to the affect of try to forget about the CP. i find this a littl difficult to do even though i hhave lived with it for 25 years now. I will admit that CP is not the primary focus of this blog like i wanted but there has been so much going on with me these days but i still never forget that I have Cp. Here are the reasons i don't forget it.
I can't run to play with my niece like she wants em to
I have trouble climbing up and down stairs and can not do this independantly if ther is no reiling
My muscles are alway tight and even though i hvae lived with this and am used to it it hurts at times especially when they spasm.
I can never drive because of my visual stuff and i am pretty sure it goes with CP even though the eye doc refuses to say so i know almost every person that I talk to with Cp hae visual issues.
I knwo ther are so many things I can do but I can not forget taht i have Cp this is impossible fort me to do and I am sure it is for any other perosn or parent of a child with CP. i have CP it is a part of me and it has nade me in part who I am i know i have it I am not ashamed to have it and frankly I dont want to forget that i have it yes i would love to be a regular fully functional person IE able to go up and down stairs that do not have rails independantly but i know that will not happen so rather than dwell on the things i can not do I treasure everything I can do but I do not forget I have Cp in fact I say I have CP it does not have me.
amy i really loved reaidng about Emma and look forward to keepiong in contact she is a very smart little girl i am gald that i started a blig and left it public i have met alot of great people this way sheila and we take it dayy by day are included too thanks for being faithful blog readers adnletting me learn about your beautiful Cp champs

not feeling so well tonight

I am having pain because of my endometriosis and it is really bad right now. I can't even explain it I have been fighting the urge to scream alot today. It is so frustrating to go through this. i think my blog is changing from being about My Cp to being about everything else. My CP doesnt affect my life as much as the other medical issues i gess i could say that the CP is a part of me and although it causes me some issues I am used tot hose ones even the pain of the spastic muscles is nothing compared to endometirosis pain and my bladder pain ugh. All in all though things are still going well just need to get through the next ten days then i have another break from the pain or at least i pray we never know with endo lol it has a mind of its own honestly. and for the new followers to my blog please feel free to post questions in your comments if you have anything you want to aks i will answer to the best of my ability

update on Ob visit

things are going pretty well in this department for now. I found out the full results to my bladder scope from her I have one biopsy area that shows damage to the mucus lining of my bladder which is consistant with the diagnosis Of IC which is what the GYN originally diagnised me as having good job again to her lol.
We talked about a few other things as welll the most proirity one for here is the pain and pulling on my left habd side in my ovary. I had to have another ultrasound in may which looked very similar as the precious ones minus the fact that there were a few cysts there. she told me with the ammount of endometriosis and scar tissue in there that having any cysts is enough to cause pain and i can say alot of it. the bad news is that if the pain gets tot he point where i can not function again it is another surgery so I will be praying that it remains unchanged for at least a few more years because it is pretty stuck there and im not yet willing to have another surgery especially not one where i know i am going to be missing a part of my female hood after it. I knew this was a possibility but to hear her speak of it again because of my pain really set reality in motion well that is my day today hope everyone else is good and oh the best news I do not have to get a new GYN yay for that so relieved

now i know for sure how hard it is to tell the difference

I have been in increased pain since late thursday night with my bladder and i was thinking i was in another flare. Well i guess not as i went to the express care today and was told that i had a UTI so lets see if it gets better with five more days of antibiotic. i am sotired of not being able to tell the difference of infection or just IC pain I am thankful that non of my family has this conditon if they did i would cry each and every day for them knowing what i go through all too often. i am now on Diet restrictions of no caffiene and low acid ugh yet more diet restrictions now it is getting to the point of not being able to eat the foods that my reflux can tolerate because of havign to restrict acidic foods. i am finding out the hard way that you are waht you eat letterally and you feel what you eat too ouch. i am not having an east time with monitoring my aid intake at all i love pizza and now know that i should really limit the ammount of it that i eat and spaghetti yes i like italian foods not good for low acid i dont eat it alot but gosh im not sure how to enjoy my pasta lol.
any how that is my weekend in a nut shell. not a very good one I do not eat oranges any more those are awful found that one with no help lolI did get some peppermint tea today and discovered that it is good with a little sugar. It is one of the drinks that is on the IC friendly foods list yay I can still have some form of tea or warm drink ans most others are out with the no caffiene thing

had a few awsome days so far

I have had a few great days pain wise. i almost feel like my old self right now my flare from surgery on the bladder is gone and i am doing everything in my power to keep it that way. I have had no caffine since surgery and am not really missing it either the uro advised it best to avoid anything that causes extra pain in my bladder so i have been caffine is one of them and so far i have basically found anything acidic to do the same so i have been trying to limit my acid intake but need to talk to them to see if there is a way to remove acid from foods if that is possible lol Im not so sure but it cant help to ask so i can eat teh things I love i made the more than likely mistake of eating pizza tonight for dinner lets see how long it takes to get me probably at least a day or so its mever within the first few hours with me but i cant take everyhting out of my life thats just not cool. well just wanted to update cause I am so happy right now and wanted others to know that happiness is still within my reach although sometimes it feels impossible

Uro appintment and a few other things

i had my uro appointment Friday. it went really well all things considered. I did ask if i could stay with the same person from here on out and the new orovider that i have was more than willing to allow that to happen. she is still in the same practice ans the others but she seems different already from the firs one that i had whom was not willing to deal with everything i have going on. I was just open and hones and told them that sometimes i require assistance with some personal things liek urine collection and the other things that are tougher for me and it is easier if istay witht eh same doctor so I dont need to explain things omany times and i would like to eventually be able to go in there and maybe not have to bring my possy as one of my other docs calls my ride and niece to feel comfortable I like to be able to do somethings on my own its not as awkward. I feel awkward sometimes when others are there with me even if it is my family but I am always thankfull in the end that i have them there.
i do not go back again for six months we would have done three but she will be on leav with a lil one and i dont wnt to see another provider so I settled for six and it give me a break to.
I met my lil niece friday she is a week old my best friends baby who i consider a sister. she is so adorable and tiny. I was so happy to be able to hold a lil baby agian. My dream is to be a mommy but with all these medical issues im not sure ill find the time to get my life together and even when that does happen I will have a hard time more than likely because of my moderate stage of endometriosis so im just taking things day by day right now an not losing hope of my dream since iw as sic yrs old.
I have had the best weekend in a long time and antoher good part is I have slept two nights in a row which is great. I had been up every two hours since tuesday until Friday night and then my bladder finally decided to calm down for a bit so ive been sleeping again which is os good so a wonderful weekend with a few moody moments just because things have gotten me down a bit.

wow not so sure this is good right now

I had the cath out yesterday and was able to go to the bathroom a good thing otherwise i would have required yet another one. scary thought lol. Well after that first trip to pee i have been going pretty much every 2 hours and yes this is at night too. so here goes the sleepless nights for a while again. praying it is not going to last and that I do not have an infction from the Cath but I go for yet another follow up on friday with yet another doctor or actually a PA but that is because i chose not to keep an appointment with the one i saw the very first time who didnt really make me feel comfortable at all so its my fault but im not sure why they dont put me in with the doc who actually did the surgery I am thinking aim going to ask that on friday. Every other operation that I have had i have seen the surgeon for follow up not someone totally different I am also going to ask if I am going to be put with a steady provider while under going treatment from here on out and if the answer is no than Im honestly thinking on changing to a different practice I am not one who likes different docs every time i walk into an oddice. I have had pretty good experience with the majority of the peopl i have met thus far in my quest for pain relief but that one experience which i have not shared and im not sure imm going to was enough that i dont want to continue changing doctors or ill continually be medically anxious every time I go there. I have been really upset thinking about the appointment Friday because i am nercous about meeting the new doctor and scared of what she will say or how she will react to my medical history I have had a few that have not treated me so well once they found that i had CP and that is unfair. i deserve to be treated like any one else and I would expect it even if i was a non ambulatory non verbal Cp sifferer. No one knows what they can understand they can't tell us but it does not mean they are not in there. it frustrates me to no end that even in this day and age people like us get treated like crap cause we are different and even by the medical comunity and yes that is part of the bad experience as soon as this person found that I had CP things went way south and it is not fair and that is why i refuse to see him/ her again no names being mentioned in fairness

freedom tomorrow happy yet nercous

the cath has not been too nad honestly they look worse than they really are. the one i had in the GYN clinic did hurt cause my urethra was not streached but this one has not been bad at all. i have slept through the night since the night of surgery. i wake to get a drink wehn my mouth is dry right now but go right back to ZZZZZZZ land it is so nice.
i want my natural bodily function back but yet im scared that as soon as that happens i am going to hav pain again. i really hate this. i hate beign nervous about everything. But Right now I can officially say I have absolutely NO palvic pain and I am waiting to see My OB so I can tell her i had five pain free days she will be so happy to hear that i have not yet been able to tell her of many days in a row with relief really hoping this was the solution and right now would i do it again in a few yresif pain returned yes most definately no regrets here on this one. five days of no pain reminds me there is hope and that i can be me again/

surgery was a success

Things went really well today dint really get too nervous until the sleepy man and women came had an anestesiologist and a nurse anestitest. things went very well and i am having bery lettle pai. had fentynol in recovery and have since taken one pyridium medicine to numb my bladder and one tramadol my pain med that is as needed for endo so i think im a success on this one folow up on tuesday to see how things are going and have the cath removed.

another update

In response to your previous coment sheila Yes the cystoscopy has been rescguduled for the hospital under general anestesia.
i had my follow up appointmetn with my regular doctor thursday after going into the ER on the fifth for pelvic pain again. in the ER they said everything was fine when i went to my primary doctor she told me that i had some small cysts on my ovaries which normally would not cause pain but im not in a normal situation lol and she also said that it looked like my ovary was nearly attached to my uterus. i dont know if that was from ultrasoind report or from previous reports but any way im still confused and hoping i can hold out until june when i can see my GYN again because i can not do it this month with everything going on its jusst not going to happen. I am feeling pretty good right now but litterally i am taking it moment by moment again for the time being.

May is not my month yet again

I went for my bladder scope AKA a cystoscopy today. Needless to say it did not go so well lol. They were unable to get the scope in. Seh tried three different times and failed all three. She asked if i wanted her to continue to try in the office or do the proceedure under anestisia. i opted for anestesia because she said she was going to have to streach my urethra to get the scop in doesnt sound too apealing and when the doctor says it will be painful it is more than painful lol. that was my day today not a good one but it is over and i am more relaxed now that ive been home for a long while lol.

rough week

Well i have had a tough week this week. I started feeling really crampy on monday and struggled with it until thursday until it got so bad i could no longer deal with the discomfort. Went to ER again after a seven month reprieve. i was so disapointed I just wanted to not need to go back for a really long time.
I got some much needed relief. Unfortunately i had to take the ambulance again but they were great and the Er staff were pretty good too the only thing that bothers me is they said there was no reason for the pain even though i told them repeatedly that i had endometriosis they did treat my pain and i guess that is all i can ask for.
i had to have another ultrasound nd it was so painful I was in tears. i think this was the worst one that i have had done and i have had many. I am pretty sure she had issues finding the blood flow in my left ovary she was kind of panicking and in turn I was laying there saying my god what is she finding or not finding and then i figured it out because she kept turning the blood flow tracker on and off and i heard it on my right side and not left for some time boy was i afraid thought i was going under the knife again ahhh.
The relief is thankfully she found it and no surgery for me ye tthank god. i have been in bed most of the week and weekend but I am starting to feel better. i have my scope of my bladder on tuesday and will update on that soon.

GEtting nervous

I am starting to get really nervous because my Bladder scope is comming up very soon it is on may 10th. I hate having to go through so many preceedures. Depending on the results is what my treatment will hold. very nervous about that too they are talking about bladder instilations. i am going to go to a different urologist after my scope to make sure that this is the only option that can help me. I do not want to have to go to the docs once a week or every other week unless there is nothing else.
i really struggle to understand why I have so many chronic painful conditions both of my sisters are fine neither have endo or iC so I am kind of confused where it comes from. Tehy say enod usually has a family conection andother reason I am fearful to have a child i do not want my daughter to e aflicted with any of this pain.
My baby boy goes to the vet tuesday for his yearly check up. Boy If i could do that it would be wonderful lol. I don't think I have dont that in my life . I think basically from here on out I will be updating once a week unless something big happens.
I am glad that you had a good easter sheila and malayna I am sorry you were sick lil gorl its no fun at all.

had an awsome easter

I had a great easter spent teh day with my family. the kidos got their easter baskets and we hung out and visited and when everone left we got chinese for dinner and then my mom niece and i went for a walk all in all a great day minus the darn pelvic pain but i was not going to let that spoil my day. i spent lots of quality time with my lil nephew he wanted to sit in my room and be on my bed so that was awsome lol he didnt really stay still but thats ok i got some nice hugs and kisses my favorite part of being an auntie.

playlist added

Ok im sure you can see that i added a few songs to my blog and may add more if i can eventually find them. Teh main reason i am posting this is because the playlist site has the name of the second somg wrong it is dont laugh at me by mark wills just thought it deserved to be posted with the right name if i am going to use it this is one of my favorite songs/ I really relate to both of these songs and listen to them alot. i have them both on my ipod and think on here in previous posts would have put them on here if i had known i could thanks to Brens mom i now know that i can I apreciate it

appointment update

Well my appointmetn went very well the only thing that is really bothering me is that she is ending her residency at the end of June and the place where she is goin may not accept any new maine care patients so i will have to wait until October to find out. I am praying really hard taht ehy will accept new mainecare patients that were previous patients of my OB because i will be really upset if i have to find a new OBGYN because she is great and treats me really well but im not going toworry about that yet i have until october to worry on that and i get to see her again in June so I can also ask her who she owuld recomend if her new practice does not accept any new maine care patients

ugh hate the change of seasons lol

I love the warmer weather but hate teh colds that come with it. I thought i was going to skip one this year but Im not so lucky. feeling like poo and just sleeping alot. I have my gyn appt tomorrow so i gotta conserve energy for that or ill be exhausted. Other than that everything here is going well.

happy april everyone

Well it is finally april. i am hoping that soon we will not get any more snow. i am tired of falling on my bum trying to walk in it lol and im not lucky cause i dont put a snow suit on first lol. Oh well just another fun aspect of having CP we gotta do what we gotta do right. Well still have not heard any results on my MRI so I am assuming it is fine. i will talk to my GYn on monday and see if he has sent any information to her as i have not heard anything. Other than that things have been pretty good this month hoping they stay mellow for me with medical stuff until may when i have my cystoscopy. Other than that not too much to update on just letting everyone know im still hanging in there.

the end of a long week finally Appiointment update

Best news first my kidneys are fine no need for further treatment follow up in one year to make sure nothing has changed. what a huge relief.
I had my urologist appointmetn yesterday that was fairly interesting. i learned that they do not call my condition IC in the urology field or at least not in this office. um do i know what they do cal it nope lol she never did tell me so now i walk with a namless condition. i do not understand how two doctors both whom i respect highly can call this iC and then the doctor who specializes in the bladder says basically that IC is not a condtion.
Seh said that she does believe that my symptoms are real um yeah i hope so if not then let me find another provider. I am really confused. Seh is scheduling me for a cystoscopy or a proceedure to look intot he bladder on may tenth and then told me that if the results of that test were normal than she would recomend DSMOP treatment or another bladder instilation. Im not 100 percent sure why she is recomending these treatments if the cystoscope is normal but i guess ill find that one out if i decide to presue treatment I m not sure I might just as well deal witht he pain. i am not fully enlightning on my experience here but it wasnt one of my best for sure. so i am not sure i will be presuing treatment at this facility following the cystoscopy or just not having anything at all.

interesting day today

yes I am double posting today lol but it is because i had an interesting experience wehn i went to hannaford pharmacy to get my medication today nothing new just kbuprophen lol. i was talking to teh pharmacy tech and i told her that i was sore from having an mri yesterday because when i bent to sign my name i said ouch so she asked why i was sore. then she asked me if i had it where she was at. i told her i went to Maine medical and asked her where she worked and she told me maine nerology well that explains why i recognized her she gave me my MRI when i went there for my official diagnosis of cerebtal palsy wow its a small world.

MRI is a success

i had my mRI yesterday and it went really well actually. the tech only had to retake one set of imagesbecause of my spasms. that is really good for me . i dont have any resulst yet but everything went well as far as teh scan portion is concerned. I slept most of teh day after the scan because of the premed. it worked in the scanner to keep my anxiety down but as far as sleeping durring it no way. i got to listen to music during my scan and then came home and the ru;;effect of teh med hit oh well i got some much needed sleep too so it was a pretty good day overall minus the injection of dye they had to give me. Good thing I asked first before they got me into the scanner I would not have been a happy camper to find out durring the test lolwell im a bit sore from laying still for so long yesterday so im going to relax a bit in a comfortable spot.

MrI anxiety setting in

i posted a few days ago about my mri but now its really starting to hit homw. i don't want to have another one done. this will be my third. My first was ordered by the nurologist to concirm the dx of cerebral palsy 100 percent the second was on my hip and now another one on my head ugh. i got pre med for the mri thank god or i would not be going in there. I hate them so much ther is so much going on with me right nowand so much to think about its rreallly stressful. i hace to see the urologist on thursday the 24th and the kidney specialist on the 25 and all of this has to occcur when my counsoler is out on medical leave. i guess the saying when it rains it poors is so true. i feel like i am complaining a bit much on her tonight lol. i am just kind of frustrated and feeling like I am losing the batle of medical stuff again..
Um i have not had too many adventures outside of the house recently because i am trying to eep my bladder calm for the next week full of appointmetns riding in the car makes it hurt alot. But i am still trying hard to remain upbeat.i have been spending alot of my free time cleaning and playing games on the computer to keep my mind occupied thats pretty hard llol. i feel like i am not going to get a break at all. teh past three years everything has just continuously piled up on me medically but i guess that is life for me and has been for some time maybe i should be used to it i dont know im pretty confused here .

not a good morning for me

Ok its almost ten o clock right now well guess what i have already gotten a phone call telling me i have an MRI on the 18th of my putuitary gland because of my high prolactin levels. Its kind of weird i had to call the doc in order to get the info on what the next step is yet the MRI he wants done is scheduled within the week. I dont understand how doctors work. Dont review things but once they do they just go ahead and schedule the appointmetn with no contact prior so I have to go with it. not that i would not have gotten the mRI but a little coordination to make sure i had enough time to find transportation would have been good and this doctor knows i have transportation needs just a little frustrated here thats all. and nercous on what may be found but im going to try my best not to think about that one.

ribbon for cp awarness

this is a picture of me holding the poster that i made for the endo the pain campaign. this picture is posted on the facebook site that i shared in previous post as well as my story of my endo battle. my story is only on the facebook page but the pic is on both i hope that someone reaidng my blog will take the time to read my story so they can help others they know with endo

Check out these sites for endo

www.endothepain.com
www.facebook.com/endothepain
My story is on facebook site and my picture will be on endothepain.com.
there are alot of pictures here of those of us who suffer from endometriosis. There are other stories of endo pain on the facebook page as well i hope that you will take the time to look at these sites they also offer a descriotion of endo and links to endo specialists for those in need thanks again
they were created by a wonderful youn woman named Ashley thanks ashley for bringing this attention to endo it is much needed.

ok just found out something i did not know this is not a good feeling lol this month is Cp awarness month and i did not know it. It is also Endometriosis awarness month so i will be posting a pic for that here as well as one for CP very soon we need to raise awarness of them somehow and if i can make one person realize how they affect the lives of theose that have them i consider myself a success.
i may not be able to work full time but i am rtying very hard to put out information on all of the chronic conditions tha i live with it is my goall in life to spread awarness any way that I can

found out why my bladder has been hurting so bad

Not that it does not always bother me alot of the time but i am being treated for a UTI because my urine showed the markers for infection. the doctor said that she has seen worse but she felt taht it was best to treat because there were quite a bit in there. I am on Cipro now until firday yuck lol but glad it might make things better for a bit lol

OMG so frustreated today

Today has been such a long day. my bladder is hurting pretty bad ok really bad. i have been using the bathroom every hour or two. it is driving me cyazy. Patiently waiting for the 24th yet still dreading it lol. i scheduled an appointment with My PCP today for monday to make sure it is not an infection just so I can be at ease. it scares me becaue of the possible kidney issues right now. i know he said that there was no effect on my function now but im not going to chance any damage to possibly already damaged organs sounds like no fun to me lol

ok so the good news is i had a really good day today

i got to feel well enough to get dressed this morning yay for that yeah sometimes i just stay in PJ's alot. i dont usually admit taht to most but i am begining to see that it is a part of my life and if i want others to know what it can be like to live with maby chronic medical conditions i guess i need to share some of those deails too. its ok to stay in PJ's if you are uncomfortable it took me a long time to accept that until recently i forced myself to get dressed every morning.
So anyhow i was sitting around chilling out and my niece asked me if i was going to walmart with them. meaning her and my aunt the funny thing is i didnt have a clue they were going so i was like i dont think you are going and she was like yes we are so i did end up going.
i got something for the soon to be adition to a friends family a little baby girl and i got printer ink at staples which luckily is not far from walmart then we went to the pet store which is also right there near staples.
i had alot of fun but boy im tired now and feeling pain. i will probably end up with a flare of bladder pain now for a few days which will be a god view for the urologist to see any how.
i have been keeping a diary of my symptoms and number of times i have been urinating to show her when i go in so she can see my freequency and pain on paper so she can get an idea of how severe my symptoms are. A flare is good for them to see. no that was not my goal but when i am up and about alot they tend to happen.
When we were at walmart i saw my favorite bus driver of all time dont ride with her anymore but have not seen her since christmas it was awsome so i had a great day all around.
i have not posted about mom much lately but i have been wishing she would get better for a while now she has been struggling with asthmatic vronchitis and now something with her belly not sure f it is viral or apendacitis waiting to hear on that one i will defiantely post when i know more

the quiet hass ended for me lol

i have been posting here freequently again lol well this one is to let you all know that i have gotten my urology appointment for my IC it is march 24th i will fill you all in after my appointment

a poem using the word endometriosis to describe endometriosis pain

Excruciating
Neasueating
Dreadful
Overwhelming
Merciless
Extreme
Tiring
Relentless
Intolerable
Obstinante
Scorching
Insermountable
Stabbing
You guys may be wondering why i chose some of the words i did to discribe my pain well here is an explanation for the ones you may be curious on.
neasueating I chose because the pain letterally makes me feel sick to my stomach
Obstinante i chose because the pain is like an obstinante person it will come and go as it pleases and ther is no way to change what it is going to do.
I chose scorching and stabbing because when i have the pain it feels liek fire is scortching my pelvis and sometimes it also feels like a stabbing pain as well
any way i am just not feeling wel right now and fel like writing something to describe how my pain felt. soemtimes it is so hard to descrice to anyone and this just started comming of onto papervery well so i decided to share with you

my baby boys turn one today

oh my gosh wher did the tiem go. it does not feel like they have been with us for ten months already. only because the first two they were with mama lol here is a pic of thenm when they were babies and ill post another later to show how big my babies are now moma love u jake and auntie loves u jeter you are my bos you are awsome puppies even when you guys run away lol.

ugh the apointments keep comming so frustrating

well lets see I dont think ive gone a motnh in 2011 without a doctors appointment. i am so tired. I just go another appointment in the mail for my gyn i have to go see her on April 11 and soemtime between now and then she is hoping i get into the urologist but i have not heard on that one yet and i already have a nephrologist (kidney specialist) follow up on march 25.
i just want a few months without seeeing any doctors. i am trying so hard. I have not seen my Primary Doctor since december i believe so i am doing fairly well there. i just completely need a break. igot a letter from the care management stating that my health seemed stable now and that i did not need their service anymore ha ha my healt is stable minus almost constant pain that i am learning to just live with now. i refuse to go to the hospital anymore it takes forever and thee isnt much they can do anymore. I just manage it home right now i will more than likely reach a time where I cant anymore but lets hope that is far in the future. It scares me to think about most of this it is fearful not knowing what kind of pain i will be in every day. Today I feel like i have razor blades inside of my bladder and I have cramps from the endometriosis so yep this is the end of my february in a nut shell.
there have been positives honestly. mom and i had a talk about me needing independance. She admist that i need more away time but she also says that she wants me close so that she can be here for me through my rough times. she is thinking on voulenteer oppertunities close to home for me yay im so happy at elast she is trying to understand i dont want to go far from here just need help finding oppertunities so i can spend time away from the house. so february has been a good and bad month all in all alright i guess. My counsoler would be proud of this blog post because i took the time to focus on some happy stuff in here i know sometimes i dotn do that enough but it all gets so overwhelming.
i also got to spend a few hours with a good friend of mine today it was really nice i just wish i was feeling better. we drove for an hour and i went to the bathroom before leaving and had to basically run to go agin when we got to the locatin we were going and then by the tiem we got back to her house for her to grab a few things i had to go again and then it was a total of fifteen minutes between getting to her house and going home and when i got here i had to go yet again. thsi si what I live with every day or nearly so some are good and yes this is alog with the endometriosis this is a recap of my intercystial cystitis the newest diagnosis. hope i have not bored you all to death lol i will update soon

God where are you lately ar you hiding from me

I had my oVGYN visit today. She came in and asked how i was doing and i was like well i want so much to tell you good because that is what you want to hear but i cant I am in pain still and not getting any better. So here is what was done today

I was instructed to discontinue my elmiron which did not hurt my feelings any at all less neasua for me yay for that.

She is putting in a referal to a urologist not the news i wanted but knew It was comming. within the next two months i will have met yet another doctor I feel like every doctor in portland knows who I am .

jenny, My OB lol was pretty discouraged that the elmiron did not help because she didn't want to send me to any more appointments and doctors but she is also doing what we both know is best for me but im still kind of sad and discouraged well tht is what my day intailed today.

It is not mothers day but for me every day that i am here i think about how special mom is to me and i want to dedicate this song to my mommy and all others out there who have raised a child especially all of my cp firends you guys are special mommys.

mom no matter what changes i make in my life i want you to think of this song. i am growing and changing but no matter how much i grow and change i will always need my mommy. i love you so much.
I know it will be difficult for you to let go i am your baby but i will be Ok and i will make the right choices in my life. You have taught me how to make good chioces and to go with what i feel and not let anyone change my mind. i love you for being a wonderful mom and making me the wonderful person I am today

Very long week for me so far

I am having a very long week this week for a few reasons the major one is pain and discomfort. I have been frustrated with a few things as well but im not going to share my full life on here lol basically just things on medical aspects or i try and keep it that way but any how i have been in a depression now for a while and it is making things so much harder.
I am at a point in life where i want to explore new options in life and experience new things but I am really struggling to find the suport and asistance I need to attain that goal. As I said before mom keeps a pretty tight hold on me because of many aspects the biggest one i think is that she is afraid of losing me because i was so fragile at birth. i really wish that i could be seen as the stron person that i am today. I have alot of medical issues yes but I do not see myself as medicallu fragile. i would really love to get a part time job or voulenteer somehere for a few days a week but it is a huge struggle with transportation and everything as well. i love my family i love bing with them do not get me wrong they are a huge part of my life and a very important one too. i am just feeling the major urge to grow and make some changes in my lofe for the better it iwll happen in time its just really frustrating trying to get there as it is for al with Cp or any other physically limiting disability. it is not a medical post but it is a huge part of anyones life who has a disability so its on here nowany how thats whats been up with me lol

i have learned that the only thing that stays the same is everything changes

well i had a good day although it has been painful for me. i went with my niece to her appointment this morning. my poor baby girl got five needles. She was such a tough cookie though. After we finished with her i had to go to my gastro appointment which auntie brough me to and mom brough miss lil one to hers.
My appointment went very well but thing have once again changed. i now have to take a fiber suplement called fiber choice along with the existing meds for two weeks then after two weeks decrease the philips to one caplet a day adn then after another two weeks stop the philips alltogether to see how thing go. the Gi doesnt want to keep me on laxative tablets for too long so I hope this works in my favor pray that things do not return the way they were before dont want to do that again.

gastro appointment tomorrow

i am going to be happy to finally have this one over with i had to reschedule twoce now lol thank you so much snow not. any way i am hoping things go well but I am not so sure if they will been having aome slight issues with constipation again i didnt really miss it for sure and i have been faithfully taking the meds that i have been given. maybe im not drinking enough water i dont know honestly but will be discussing it tomorrow to see what he thinks. not much else to report on yet will have more to report on after the appointment.

happy snowy february to all

I am so tired of this snow. it has been crazy this year. I cant wait for spring lol. Other than that not much to report. I have my gastro appointmetn and ob appointmetn comming up this month provided we dont get burried in the snow lol. Im hoping not because i just want them done and over with. Other than that things are going well for me for the most part. im having hip pain again but not going to the doc for that yet until I cant deal with it anymore hope it dies not get to that point though.

Billy Ray Cyrus ft Miley Cyrus-Ready Set Don't Go-HQ Duet

this is a song that really relates to the spot that I am in with my life right nwo. I am ready for change right now but others are not willing to accept that. I am waiting for their acceptance and willing ness to try and let me go. I love this somng by Miley and Billy Raye

appointment with Reproductive endocrinologist went well

so glad for that. there was very little talk on the topic of pregnancy which i was surprise because last tiem there was alot of it. i told them that i was basically in the same place as a year ago and not ready to have children yet and they were good with that we discussed treatment options for my prolactin levels because i have been having some symptoms but they are not bothersome enough for me to want to have to take yet anotehr medication every day so we left it at that and he is sending blood to recheck it and then i will be set again until next year. the good thing is that if my levels remain boarderline high like they have been or normal my GYN can monitor them rather than having to go to his office once a year so that was a good thought for me one less doc is always good even though he is a nice guy lol

hacing another tough day today

I have an appointment with my RE reproductive endocrinologist tomorrow morning and Im not really wanting to go at all. Last year when i went it was if you want to get pregnant before next year give me a call and we will start medication because of a few issues one being prolactin levels that are high to boarderline high owere at last check and the other complex part of my fertility is of course the endometriosis.
This is a really difficult subject for me because i am still so unsure what my next step in life isI love kids and want god to bless me with a million if it is meant to be just kidding not that many one or two is good ha ha but yet I know that being in the place in life tha I am now it is not the right time. there are alot of contributing factors to it not being the appropriate time for me but you know i feel kind of lost I always knew that I would most likely be the last to have a child but my sisters have both had theirs now for two and four years. I kind of want mine to fit into the age niche but yet i know i am not ready.
When I went to my GYn or a GYN that works in the same place as mine for an emergency pain management visit she was like you dont have kids and it doesnt sound like you ever want them thas not true yes I have many days where i wonder how I would do it but If I were given the blessing I would do everything a parent should do for a child. i dont know I am just finally starting to reach this point in my life that even with my wonderful family i feel empty and alone have no idea if this normally happens or not but hey this is how I feel today and i just dont want to face this appointment at all with the news I have already gotten about possible kidney problems this year its just all becoming to much

another appointment over with

I was hoping this year would be much easier than last with appointments and issues but so far no such luck. at the end of last year I only had 2 appointments scheduled for 2011 now my mind is over flowing with dates and times. I really dont know how much more of this I can take. i am so frustrated and I just want a break from doctorswhich is not going to happen until march unless something else comes along than it will be later than march. hoping everything looks good with the ultrasound and they didnt say much so I guess nothing huge is wrong thats good. i just feel like curling into a ball and leaving the real life for a few weeks just to get a break from it all. I just really feell like I am a labe experiement that is being polked and proded. Sometimes i just sit and debate if the appointments are really worth it and neededugh I know that there are others out there who have it worse than I do with things but man a break would certainly be a good thing and I mean for more than a month lol. My wish on new years was to go for more than three months without an appointment that has yet to happen so I may still be able to do that but no time soon well im going to go snuggle with my niece and have a nap which i really need.