Happy new year

Wishing everyone a happy new year and hoping 2011 brings me some better days 201 will definately not be missed by me its been a long hard year. rining in the new year with more appointments lol

busy week

I have been so busy this week. I have been babysitting all week since it is christmas break and my aunt has been working so I am waiting for a nice relaxing day to come my way soon. tomorrow will be much the same because my nephew will be with me because his dad has some other things to do tomorrow then he will be picked up again. i woke up at four this morning with my parents going to work them was up again by seven thirty for the kidos so tired right now.
well I have been having a really hard time keeping my mind occupied and off of the appointment comming up with the kidney specialist. I told mom that I was really nervous about it and she said not to worry about it because it is probably nothing but guess waht that is not happening because so many medical diagnosis have come my way recently I am afraid once again that it will be something i cant say that it will be nothing until i hear otherwhise from the doctor him or herself
i also had a visit from my bus driver that i had fron eighth grade until 12th grade today. I see her once a yeaar and it is around christmas. It was really nice to see her again i have really missed her alot.

my christmas

I had an awsome christmas this year despite the news i recieved just a few days before on going to the kidney specialist. I dont know if i posted but i go see the specialist on the fourteenth of januaty. but any way i am not going to think on that too much for now. I am going to enjoy my time to the fullest in the time before the appointment. any how back onto christmas I got a few new outfits a pair of new shoes and a few books along with some PJs and a few wii games. it was not nearly what i am used to getting but that is fine I have been telling my parents since my niece was born that I am not little any more i think maybe they finally may have causht on to that one at least in respect to christmas. i know now that christmas is for time with family and to celebrate the birth of jesus it is not all anout recieving it is about giving and recieving and better yet being apreciative of what you do reciebe well that is about all on my christmas now if i were writting on the kids christmas and what they got I could go on forever lol they loved their christmas too it was a great day for all of us

Test resulst in not good news

Well i was getting ready to take a nap earlier and the phone rang and it was My doctor or NP actually calling to tell me the results of my urine testing. here they are, i do not have a urinary tract infection which is good. they next bart of teh convrsation went somethign lik ethis but There was alot of protein in your urine and then she told me that she knew i didnt want the news but that i would be getting a call from maine nephrology sometime early in the new year. i am so scared. I dont want to go through any more medical proceedures I just want a break to be a normal 25 year old women well as normal as i can be with all the already existing medical conditions. i am going to my freidns house tomorrow and spending the night to spend some time with her and the kidos so I am really hoping that will take my mind off of things. i just hope i am able to stay at a low pain level so I can enjoy as much of the time as possible. I am not even really thinking about anything besides day to day. i dont want to know the next step dont want to meet the doctor so guess what i am just going to do my best not to think about it that will not be easy but i hope I am provided with enough distractions over the next three days

dear al of my medical conditions

You all sometimes manage to make life very difficult for me in one way or another. right now my dear endometriosis you are causing me pain in my belly and to my wonderful friend IC i know you are still here vause my bladder burns each and every time i go to the bathroom. My friend of Cerebral palsy I cant forget you either you make it so easy for my sweet and energetic puppy to knock me down. My visual issues you bug me more than you know you take away the most of my independance i cant go anywhere on my own unless of course i walk.And now to teh protien that was in my urine the other day I hope that you are not here for the long term and you just came for a very scarry visit I dont want to end up with kidney issues so if at al possible you can go away please do it very soon. That is one of my christmas wishes that the test results come back as only slightly elevated levels so it can reslove on its own. If that were all I got for christmas I would be so happy honestly no present in teh world is better.
I want to enjoy time with my family and not have to worry about my health. I am not really worried about the other issues as it states above they are just a part of my life that makes it much more of a chalange but this kidney thing is really scarring the crap out of me. I may be odd writting a letter to all of my medical issues but it has made me feel better. I want others to know how this medically complex life affects me so maybe some day others can understand how to offer more help and suport to others in my situation.
I am going to have a great christmas weather or not I have pain discomfort or any other possible bad symptom you medical issues will not succeed at taking my happiness away I may get down sometimes and have to figure out soemthing to bring my spirits up but you can only knock me down for so long and then i will return to fight again with all of my remewed strength you will never keep me down. A letter from the person inside the body that you bug each and every day remember you are a part of me you are not me and you will never take me away i am a fighter and that is how i like it sometimes i wish things were easier but you know what that will not happen so i have to keep my fight alive forever. oh andyes i can say thank you for the one good thing of all of this medical issues. I have met some very caring people and i have become a stronger more understanding peroson because of all of you dreaded medical issues.
You may ask how i have become a more understanding person well first off I know what it feels like to have pain most days of my life so I can understand others when they do not feel well. I know what it is like to be teased so I really know how to follow do onto others as you want done onto you. also another way I have become a stronger person and also avery helpful or i hope a very helpful person is through sharing my story and good and bad tiems with others. Well i hope all of my followers can truly understand this letter to my medical issues and also i hope you all are able to have a merry christmas I know i am going to no matter what i am going to enjoy everything I can and not dwell on the negative of medical issues if i have a down while i will go into my quiet thinking mode and deal with it maybe a few time outs but those are Ok for me and right now to me it dies not matter what others think I need to take care of myself along with making others satisfied and if that means a few upset people well I hope they can understand that i still will be here in the future to spend more time with them I love my family dearly and even though i get angry soemtimes with certain aspects it does not mean i love you guys any less

more bad news or possibly

i am a little scared right now went to the regular doctor and had my UA urinealysis done and they said they do not suspect infection because ther is a marker that is not there that is key to infection cant remember what that is right now but any how here is the not or maybe not so good news. They found protien in my urine again. This is not the first time and the last time it was found in my urine the doctor or nurse said it was alot and this was before i changed providers and the nurse also asked at the old doc if they set up an appointment with a urologist and i said no they really did not seem concerned about it. so back to today there is protien in there again or still maybe im not sure honestly sometimes they say its normal other times its not but she said depinding on what the test results are after sinding it off to the lab I may be going to a nephrologist AKA a kidney doctor. i have already been though that and do not want to go through it again but the one major thing that scare the crap out of me and I have yet to share this with my PCP and probably should is that around the age of four to six maybe a bit older my doctor at that time which was yet a different one told my mom that i would be a good candidate for dyallisis so yeah I am scared alot.

had a good day

Well despite pain i had a really good day yesterday. despite pain and discomfort i made myself go over to a firends house because they wanted to have me over for my birthday and christmas all together. I had not seen them in almost three months or more again because they have been really busy and i of course following tradition for the past two years have not felt well. i was really nervous about leaving home because of the pain but all in all it went well.
I got a nice new blue sweater and a christmas candle holder and a couple of other thngs from them feel kind of bad though because i usually bring something for them because they said that they would rather have something baked or made for them rather than me bying but i have not really been up to doing much so hoping next time i can make them some banana bread a little late but that does not matter right it is the thoght that counts. i don't want to jynx myself but i am starting to feel better after getting a dose of pain meds in to me last night. i called the ob friday and she was very good to me i just needed a lil something to get me thorugh the end of the pain if i had not gotten it i dont think it would have been the end of it though it is hard to recover after three weeks of steady pain. i am going to the primary monday to ensure that i am not getting a Urinary infection because i have been getting stabbing sooting pains up there but guess what it could be the adhesion too so better safe than sorry lol
Oh yeah i forgot to post i made gingerbread cookies for the kids durring the weeend last week and they had fun i have pictures to post later i forgot to put them up but will as soon as i can

Oh My lord is this seriously how i am going to have to live for the next ten years

I am in horrible pain today. I called the OB and they gave me a perscription for ultram and basically said that was all they could do at this time. Is this what I have to look forward to forever pain and medication to zonk me out so i have no life. They said that the ultram would not put me to sleep but I have odd reactions to meds IBuprophen makes me sleepy at 800 MG. I am due to go back in february i am kind of wondering if there is really a point to going. I just want it all to go away so i can have more than five or six weeks without pain. I hate chronic pelvic pain. my adhesion is pulling alot again and ther is only one hope of relief from that another surgery and i dont see that one happening any time soon not that i want another one . I am just so frustrated. Is it too much to ask for one cycle without pain i guess so when it comes to endometriosis. I am just praying I can get it under control before christmas. I also have to go in for another appointment with my PCP on Monday hope I can make it wihout tears from the pain ugh I would hate to break down in front of someone but when i get the really sharp pains ive been getting i cant help it ugh. this is going to be one long journey and i dont think i am prepared to go thorugh it. I am so exhausted and unable at times to fufill the basic tasks of life
I have plans with a friend tomorrow that i dont feel I can back out of because i have not seen them in three or more months and for some time i was going every weekend. I just hope the pain does not become excruciating while i am there it is sad that i am afraid to leave home because of pain boy do i hate this. One major good thing is that I have not gone and will not go to the ER again for it. I will suffer through it with what I am given and make it be enough. I feel like everyone is basically at a loss of what more to do because they have done the lupron which i will not do again even though the relief was good while it lasted. The side effects and pain of the shots are not worth it for the short relief it offered i am only seven months past my final shot and it will be a year in january since my first one if that makes since a year since starting seven mo9nths since ending.
i will not go for another surgery either until I am older and they can do something more to rid me of the pain. I am not willing to have endo and scar tissue removed to have more return. The only way that i will have another surgery is if it is a medical emergancy or they are prepared to take the reproductive organs completely and they will not do that because i am no where near menopause and hove no living children so it is going to be a living hell for a long time comming well hope this was not too detailed but it is what is going through my mind today and this is my blog where i post things like this because i want others to know what endometriosis is really like it is evel and relentless

Another long and not so good day

Still in pain and now I am having pains that I have not had before but I am still reluctant to go into the OB I dont really want to describe the pains that I am having hee but they are really uncomfortable. I have been struggling to get through those and what does my puppy do but try and run away from me. He actually succeeded and if it were not for a nice passerby I would not have gotten him back. It was horrible I was so scared for him because I live on a mainroad and it is the busiest one ever. SI ran across the road which I will be honest with everyone i do not normally do on my own. I am afraid that no one will stop and i will get hit but I did it and then once i got him back with some help from the nice lady i dont even know her name she left while i was putting the dogs in the house i did get to yell a thank you to her though I wish i knew her name so I could thank her apropriately.
This is the difficult part of having two dogs now. I try to watch them both ond one usually ends up sneaking past me so it is not fun for me it is really very stressful

All about endometriosis and how it makes me feel

my emotions have been fluctuating alot with the pain lately. I am really struggling through it right now. i have had my cycle now for ten days and it is so miserable for me still. I don't really know how rto discribe the pain so that others can understand but I am going to give it a good try here. It is a burning uncomfortable sometimes neasuating pain that just has not left me for the past ten days despite ibuprophen and tylenol it just keeps comming back. I am conflicted right now because I feel that something different may be of more help but I am reluctant to call because I hate medication. I am tired of the struggle but yet still not quite willing to give in. I dont really know if this makes much sense to anyone but this is what is going on inside of me today. i just want to sleep until this pain is over but yet sleep is so difficult. I feel so much pressure in my belly and burning discomfort because of the lovely endometriosis sometimes i wonder how i get through this every eight weeks. i homestly am finding myself wishing that natural menopause would take place now rather than later because with each passong tiem this occurs it is getting worse again. I just feel lost in pain and discomfort right now and I am trying to find the light at the end of this most recent tunnel. Every two months it is like I have to find my way through yet another never endoing tunnel. And then soemtimes the pain lasts for an aditional week after the end of the bleed so it is still quite unpredictable for me. I guesss it is just something I have to get used to and live with which i will admit is not an easy task. some days even a year after diagnosis i still wake up and find myself thinking no this is not really happening It is a dream.
it is very difficult to think that I may never have the oppertunity to have children. I am not ready for that commitment right now but in the future my body may be so dammaged from endo that I can not have children any way. I am still tryng to accept that as well. it is a very confusing emotional road and i am never really able to forget that I have endometrisosis because each tiem I start to have a good quality of life again the pain is back. I am thankful tha tit is not constant but it is still physically and emotionally draining in so many ways.
every single time I have to go for an appointment it requires preoperation to fimd a ride there which in itself is stressful and then just going tot he appointments is anciety producing because of everything i have been through and then not knowing what the nect step is should things get horrible is really hard. i know that it will not be another surgery unless I get really terrible because I told them no more after the first one unless they are absolutely sure that they can remove somehting to rid me of some of the pain. this is a very difficult conditon to live with. because no matter what they do to try and help it will never go away. Even after menopause if I take hormone replacement It could come back because the lesions require estrogen to grow and that is usually in HRT. thinking of all of this really is bery emotional. i know that I have at least another 20 years to deal with it and i sit and wonder now how am I going to get through each aditional episode of pain. this is going to be a long hard road that I am not sure I am fully ready tofight and that is why i only take things moment by moment when I am in these episodes each day that I am able to push though makes me a stronger person.
i will be completely honest I do have people in my family who call me a baby and a whimp and that does really bother me but then I sit and say you knwo what they dont know how i feel they dont know what this pain feels like and then I get angry because they feel that they can judge me without knowing what it all feels like. Most of the tiem when i am in pain like this i am so tired and fetigued I dont want to move my back hurts my legs hurt basically everything from by belly button down inside my pelvis hurts. well i dont know what more to say besides I wish others could be more understanding but I think maye that may be too much to ask of them
I do want to say thank you to all of the great people out there who support me through my blog and thank you to a very loving understanding mom who is asways there when I need a shoulder to cry on or a joke to make me smile i love you so much mom i dont know what I would do without you you have helped me to get throguh every one of these moments and there are not enough words in the world to help me to say thank you and show you how much I apreciate you well i am going to go lie down and try and sleep not sure how that is going to go sorry for the long post but just needed to get a lil of everything out just kind of happens liek that sometimes i am bery proud of myself too the last tiem i went to the docs was to have my bitamin D levels and the other blood work drawn I have been doing fairly well

had a good day so far

I did get to go witht he kids to see santa but guess what neither one of them got their picture taken they didnt want to go near him. I am still in pain but trying to enjoy my day as much as possible we went to cabelas and to lowes and now we need to go get dog food I will post more later

just some thoughts for today

I have been having a tough week this week. i am still in pain. my dad told me he wanted me to keep faith and have my little cousin over tonight so that he and mom can bring them to see santa tomorrow. i really want to go but I dont want to spoil everything for them because I am not feeling well so I am thinking ill probably just stay home and be by myself yet for another day. Having this pain makes me so tired. I dont really know how to ecplain it really. Right now i am kind of at teh point that i wish I could give it to a few people just so they know how i feel every time I have my female issue. I dread it I get angry because i know what is comming. i dont want to feel like this every six weeks and soon it may be back to every month depending on how long the ring is effective for me I have not had very good luck with BCP's and it is basically a birth control pill in a ring form it has the same stuff in it so we shall see
Well any how this morning i was kind of bummed because I was not going to be able to talke a nap and rest and i told my mom that it was going to be a hard day and she said she figured it would be but then another family member was like we all have pain just deal with it. If anyone knows that we all have pain its me um I have had this for ten years now and I know I should be used to it but i dont think that ever happens.
I am getting scared that it is going to come back and be at the same point it was before i had surgery or lupron. It is not fun to be afraid of the pain comming. It changes so quickly last time I had the pain I got through it with no pain medication at all this time i am on ibuprophen and tylenol so I cant help but think wow what is the next time gonna be like. This is a horible condition and it is still managing to take ten days or more from me every time it decides to act up yes it is bette rthan all month long but still it is tough. I know I am complaining and maybe I dont deserve to complain but I feel that very few people really care to hear me. I dont know I am really just very confused and feeling kind of like the lupron and the surgery were not really as effective as we had hoped well i guess that is about all for today

Finally gave in and called the Ob today

I was really kind of nervous to do this because every other time i have called in they have made me go to the ER except twice now this makes th ethird. i called in and explained what was going on and waited for them to call back all the while praying it was not going to be another send me to the ER call thank you lord for answering that prayer she told me to alternate between tylenol and Ibuprophen and if that did not work to call her back and they would give me something stronger but I am good with this it seems to be enough to take the edge off that is all i need. thank you Jenny yes that is the docs name too lol for not shiping me to the ER for my birthday it may be the second one that i have been miserable for but at least i get to be miserable at home where i want to be. I didnt get out of bed much last year on my birthday either because i was still recovering from my surgery so at leas this year is better in that i am not recovering from any form of opperation yay for that there are stilltthings that even a person in pain can be thankful for i am thankful for my family for making my sinday very special for me even though that was the start of the pain i got to enjouy cake and ice cream and family that was great for me now today i am enjoying lots of not wanted time on the couch lol

um happy one year and few day annaversary

yeah I am a little frustrated right now i had a good day for the most part yesterday spent with a little six year old girl whom I have been watching since she was ten days old we had fun until the last three hours of my visit then I started getting pain in my left side again and soem dark bleeding so now I am sitting home today on the couch for the most part trying to get the pain and discomfort under control. What a wonderful gift just before my birthday this will be the second birthday in a row that I have spent in pain unless of cours god gives me a mericle and stops the pain before tomorrow I dont know if he will but I can hope right Boy I miss my pre endo and Pre IC days this process of on and off pain is begining to drive me insane.
I did have a good birthday dinner sunday night and a really good cake despete my pain I ate and then had cake and ice cream and enjoyed time with my mom dad sister neice and nephew oh yeah and my aunt almost forgot she was here because she isnt usually at my house after five in the afternoon lol
My cake was called a lady finger cake it was vinilla cake with another cake similar to angel food stuck to the outside with frosting and it had strawberries in the middle of it yummy tasted mych like a big strawberry short cake and i had vinilla ice cream as i am trying hard to saty away from chocolate but boy i am reminded every time I slip up like this morning mom was like you are going to eat faith's chocolate ice cream well yeah i did and yeah i regret it but it is so hard I have been trying and right now is the worst time to make diet modifications the holidays omg. i have been doing really well with staying away from soda though yet another IC and IBS trigger food I guess it can only be done one thing at a time right. Chocolate is probably the most difficult one for me once I beat the chocolate down it will be easy from there lol

Wow its been a tear

Today has been a day full of conflicting emotions. i have been doing alot of thinking about where i was today a year ago. I was in surgery trying to diagnose my pelvic pain. and wel know the outcome of that was endometriosis. i kind of find it hard to believe that i have made it thorugh an extrememly difficult year. From surgery to lupron and beyond. i would not want to relive this year but i realize what a strong person i truly am to have gotten thorugh that long year. i am thankful for so much right now my mom for always being there to listen when i was in excruciating pain, The family that came through for me to help take care of me before surgery auntie cheryl is the one who took care of me before surgery and brought me in thanks for thart hug i will never forget it I was so scared.thank you to two wonderful doctors kalli veraklis and jenny Phfhal for doing my surgery and for everything you have both done to help me all thorugh the year. All of my family for the smiles you helped me to have through one of if not the toughest year of my life i love you all for everything. It is really hard to imagine the pain i was in with the endo a year ago and to realize that now i only have severe pain when i have a bleed. I dread it but you know its a part of being a femal. i am still dreadfully afraid of the day that eh pain reoccurs because there is always a possibilityuntil i go through the change of life well that is about the big news for today and thank you to all of my wonderful followers for all of the support over the year.

another long awaited appointment finally done

I got my permanant crown today finally ive been working on getting it since april i believe never knew one thing could take so long lol. I am very happy because it was not tow hours in the chair this time yay. that is definately a good thing because my bladder is being awful today and the horible thing is I have not had caffine or anything in over a week. so i really dont know whats up this time i guess the flare of pain is just my luck lately lol I will get through it though sheila i hope you and your family had a great thanksgiving and steph and brendan as well

Wow the med regiment changes yet again

i dont know if i posted but the day before thanks giving i had some lab test drawn well they were all normal except having a mild bitamin D deficiency so yeah needless to say it is another pill for me to take and then have more labs drawn for vit D in 3 to six months. so tired it does not matter how hard i try to keep away from more meds i end up on more.
I am still in pain alot but my bowels are doing better now and the endometriosis pain is still good now it is just getting the bladder pain and discomfort under control. The doc told me to come back in if I felt i needed to I do but yet I dont want to go back in so i am having a fight with myself lol. I dont want to put any more stress on my family i feel like i have been stressing them enough with everything lately. i dont like that feeling at all. I wish i could be more independant but with no drivers liscence that is not an easy task nearly impossible and trust me I have treid on mor ethan one occasion.

my brain is in thinking mode having some contemplation with myself

here is what has been going through my head basically since thanksgiving. i have been really thinking that i need to learn how to live more independantly. I need to know how to pay the bills and things if something happens to my parents and need to feel fufilled with this stuff. here is the delema. i dont talk to mom about this because it really upsets her because for some reason i feel that she thinks she will be here forever. I wish that were the case but that is not how it works and I am in good enough condition to do things independantly just neeed so way to learn how and some way to get more independance with my transportation.
i know my options but i am really having a huge issue bringing this up to my family. I dont want to make them feel that i dont like living with them because I do honestly its just the thought of what am i going to do when that dreaded event happens and trst me I am not wishing it on anyone Mu parents are great this is just been going thoguh my mind actually for quite some time and i have brought it to my parents attention and they had the reaction of i hate living with them. i dont hate living with them here I just sometimes feel trapped because there is not any form of public transportation in out town. i dont want to sound selfish but if i dont learn how to be independant now when am I ever going to.
here is another question are these thoughts that go through every ones mind or am I just worrying for no reason at all. i just dont know who i will turn to if soemthing does happen and being unsure is really not comforting. mom and i have had a constructive conversation on it and she agrees that there are not many family members i could actually count on if something should happen to her most of my family members help out now because she is there to explain things to them and that i need to have transportaiton to my appointments because when i try and explain they just get frustrated and think i dont need to see the docs and i am using my medical issues to get attention which is really hard. i love my family and my parents are the best in the world and if it were not for them I would not be who I am now but there is so much to think about pretaining to my future and it scares me sometimes because in my house mom is the only driver besides my sister who has her son to be concerned with and im sure she wont be here forever either lol not in death terms just she will move on. but any how I dont think anything is going to happen in the really near future but it is somrhting tha needs thought or at least i feel it deffinately does.

had a really good day yesterday

Thanks giving was really good yesterday. I helped stuff the turkey and heled make the stuffing and put the turkey in the oven and a few other things so mom didnt have to do so much on her own. We had a really nice day and it was actually relaxed usually everyone is crazy trying to figure out what to do or needs to be done lol typical holiday behavior for our family lol but this one was very relaxed and went off withour a hitch. The day was spent with family all day and with the two puppies that was interesting but it was good all and all I enjoyed it very much despite my not feeling 100 percent

happy thanks giving

happy thanks giving to all who follow my blog. I had a wonderful thanks giving gift today ha ha not. the GI ordered more blood work when i went in so i went to have that drawn at my primary docs office and low and behold it was five tubes. The lady even sat and told me the colors lol two yellow two red and one purple cap. I had my CMP CBC Viotamin D thyroid stim hormone and a sed rate drawn. so needless to say it was not a bad blood draw things went smoothly but not my favorite thing to do just before thanksgiving.
I am not feeling too wwell again today I am cramping badly and very naseuated. i am hoping this round it may just be a 24 hour bug cause mom just got over something this past weekend. I dont want to go for another three months in pain. I do however intend to enjoy the time iwth my family as much as will be allowed with my not feeling well.
my bladder pain is being very annoying right now as well. between my stomach and bladder today has not been a very quiet day lol. i did manage to cook the pumpkin pie earlier and make it to my appointment so i think I can call it a productice day

a little on everything

Well the upside my stomach is feeling better. I have been using the philips and today started the colase. I feel so much better now I am not cramping anymore at this moment. As far as the IC goes I am taking the Elmiron but it could take up to six months to fully work. Right now the bladder is doing pretty good too. It has calmed down alot since the proceedure has been done. it took about threee days to calm down but it is doing well for the moment.
As far as the Cp aspect goes it is there lol. I am having some increased joint pain because of the cold and increased spasticity but I am hanging in there. I went out with the family yesterday for the first time isn a while. We dont really go out shopping and things unless it is around the holidays So I am glad i was feeling well enough to go. the only hard part is needing to know where the restrooms are because even though my bladder has calmed down i still have alot of freequency.
We are starting to decorate for christmas which is fun with the puppies not really lol. the have knocked some of them down already lol I have my nephew today so I will be busy and on my toes all day so i am taking the time while others are here to post this. I have a lab appointment for more blood work on wednesday and then I hope I will be set with docs until January.
I have a few things now with the Elmiron that i have to watch for but that is nothing new for me side effects are just a part of my life lol. i really have to watch for abnormal bruising though because the Elmiron can cause blood thining. I dont understand how but I know it can because of the patient information packet so im going to be over bigilent for a few months lol. It is so hard for me to put mew medications into my body i hate it. Right now I feel like my life revolves around meds.
I take meds for my bowels in the morning and an elmiton then in between I take my usual daily meds for blood pressure depression and a few other things then at noon i take another Elmiron then at five anotehr one and then before bed my other medication for my bowels. it is so difficult but worth it if they help. I definatley know the bowel regiment of colase and philips are helping still skeptikel on the elmiron. That is the hardest of the meds to take I have to take it one hour before or two hours after a meal so it requires some planning

Gastro appointment today

Well the gastro appointment went well as far as I am concerned. I am now suposed to be taking milk of magnisia pils and colase 1 or 2 pills a day for the next four to six weeks. I was doing the metamucil and wondering why i was getting more cramps well that question was answered too. she said that i was just putting more stuff on top of an already congested belly and it was probably not helping much. she told me that I needed to get my bowels moving more regularly and then add the metamucil back into the diet. i need to ask if there is one that is not flavored out there lol they taste nasty. i went to try and get the stuff at the pharmacy and they did not have the pill form of milk of magnisia so yeah im waiting to see if they can order it in for me.
i had a different doctor today and i was talking to her telling her about being born early and that i almost had to have my bowels scraped to get them moving as a baby. she asked if I was in maine medical center in the NICU ansd I told her that i was and she proceeded to tell me that she was most likely one of the nurses that took care of me when i was there. I find it kind of nice to know that i have met one of the people who may have taken care of me and I also at teh same time find it kind of surprising but any how i hope she was one who did care for me because she is very caring. i have to keep my appointment for january to see how the new recomendations are working.
I was suposed to take the meralax but after the taste of it in the gatorade I dont think I can stomach it. After it disolved it was not horrible but it is just the thought of it lol that is whey i asked to be put on a pill form. i also have to have more labs drawn yaya not. i am having CBC CMP thyroid and vitamin D tested i think there may be a few more in there im not sure.
i am going to take my first dose of elmiron today. i will only be able to get one dose in but it is a start. i am nervos about it as I am with any medication that is new to me. I dread it actually but it needs to be taken to see if it will help. I am hoping that it does. Other than that a fairly ordinary day today.

another aspect of living with many chronic conditions PA from the insurance

I just heard that the PA for my medication for the IC called Elmeron was aproved so now I am going to have to go through the Pa process with two of my medications now the other is for my reflux it is not really that difficult for me since i dont have to submit the paper work the docs do that I am just the one who waits for aproval or denial notices. thankfully as it stands now they are both approved i hope with all the change that is most like;y comming our way for medical purposes will mean thaat it is still covered.

another chronic yet treatable condition for me

Well as I said yesterday wehn I posted one of the posts i had my catheterization test done. the IC suspission is confirmed. Not what I wanted but it was what was suspected. the cath was tough but mom was there to hold my hand and yes even big people need that sometimes lol. They instilled both solutions one was not too bad the other made me want to fly off the table and go pee within like two minutes. It burned alot and then when we were finished she put the rescue solution into my bladder and it was like gone within a few minutes it was so cold that it basically numbed my bladder instantly. it felt like Ice was going in there. and not often does ice feel good in the bladder but this time I was glad for the relief.
She asked me which solution I thought had the potassium in it after the test and I answered her question with 100 percent accuracy. it was number 2 and it is not alwasy given in this fassion they switch it around so that it keeps the test more accurate but trust me If you have IC you know imediately basically which solution it is it feels much different that the saline solution from the get go. with me it felt much colder and I imediately felt the need to urinate and then as it sat there longer i got pain and burning. not exactly how i wanted to spend my tuesday afternoon but hey its over with now. I got my flu vaccine as well so i do not need to make another trip to see the primary as of yet. I am hoping to get a few months after all of the Gi stuff is done and the OB is done.

This post is geared more toward life with erebral palsy for me

I was on you tube a while ago watching videos of the many who share information on their lives with cerebral palsy and under one of those post someone posted that they felt sorry for the person because they had trouble speaking and moving. well this is what brought this post to light for me as I know the blog has not been related to CP hardly at all.
fotr those who have not gone through to read my full blog I was diagnised with spastic dipligia cerebral palsy at 18 months of age and it still affects every aspect of life today. I am unable to drive and unable to walk long distances without getting tired. When I go cristmas shopping for example I have a list of everyone who I need to shop for and get most of them done depending on who I am with because those ones i can not do because they will get the hint that the gift is for them lol. I usually only go out shopping two to three times at most for christmas gifts becaue it really stresses me alot and I get really tired and when I get overstimulated my cranky side shows badly.
another way that CP still affects me today is I still have a startle reflux and others like to use it to get a laugh and depending on the person I usually dont mind i normally laugh along with them.
Also i am learning that as a young adult with cerebral palsy that certain things that pertain to having cerebral palsy come along for example I have joint and muscle pain now tht most people my age do not experience. aslo I notice that as the weather gets colder it gets harder for me to control my spasticity and that seems to be getting a little worse with each year at this time. I just wanted to let others know how the Cp effects my life each and every day.
I have also had alot of peole ask me if I wished i were different or normal, My answer to taht is no I have not wished to be different for a long time. Yes it took me alot of tiem to realize that it is ok to be me and what others think does not matter but i am at that point now i am completely happy with the smart healthy young woman I am today.
I have been teased and things and that just makes me realize now to look at what is on the inside of people because that is where the most important things are. I dont like the saying beauty is only skin deep because when alot of people look at me for the first time they do not see my beauty because of my differences. I see my self as normal and beautiful but others need to take the time to get to know me on the inside to realize that my insides are the same.
i hate it when people feel sorry for those of us with cp that is not what we as people want and yes that is what we are we are people that are just like non disabled people on the inside. all we want is respect and most of all acceptance. this message does not pertain to my blog followers you all know from personal expereince that this is the case. it is for thos who do not understand what life is like to be permanantly different. we love ourselves and we were put here for a reason. It may take us longer to fined that reason but we are here and we were put here by god's grace and I thank him every day for the time he has given me on this earth to watch my nieces and nephews even the non biological ones who call me auntie grow and change.
I feel that I was put here to make others understand this condition and I am doing my best to do that in the only way I know how. I am not paid to do this but I feel it is my place people neeed to understand how it is to live with CP or any other physical or mental disability. try walking in our shoes for a while and you would wuickly realize we are not that different in our wants and needs.

CP is only part of us

Cp is part of me

This is true you see

it is just a part of me

I may look different

i may walk different

But my feelings are no different

On the inside I am the same

of my disability i am not ahamed

Ion the inside I am the same

I feel love

I feel hurt

i feel happy

I feel sad

i feel glad

I feel mad

We all have feelings

that is what makes us human

My feelings have been hurt

some have made me feel like dirt

those bad times I have over come

tiem it has taken some

but those I have over come

now each tiem someone is cruel

I no longer get blue

I tell them about what I have

and after some feel sad

i tell them not to feel bad

i am who i am because of my CP

but it is only part of me

this I wish everyone could see

I love my CP and I love me

This was just a poem that I basically threw together because of what i saw tonignt I hope it helps to get the point acoss that those of us who are disabled just want to be treated normally accepted and listened to. See my CP thoughts do come back lol I am sorry the blog has gone so awry but I have had alot going on to all of my faithful followers thank you for knowing and understanding throguh personal expereince what we want and need and thank you for doing your best to take care of gods special people we are all special in our own way but god put us here for a reason. seheila and steph i love watching Bren and malayna grow and change and love hearing from you on my blog if you have any specific questions on how CP affected me in any way through life please feel free to shoot your questions even if you have soem ideas for topics of posts on CP i am fine with that as well.

very nervous

I have my catheterization tomorrow for potassium sensitivity test to test for IC a chronic inflamation of the bladder lining. I am not looking forward to it at all. I had a cath when I was four and remember it clear as day. I am hoping this one reveals an answer though. I want to stop going to the docs thinking I have infections when I dont. I am so frustrated

ugh tired of it all

Ok i thought i was on the road to recovery with my tooth but now im not so sure I think it is actually an upper tooth causing the pain. I know that some of the pain and pressure was relieved yesterday after her digging in there but today I cut back on the IBupprophen and one of my upper teeth is really sensitive to anything touching it so I am going to wait until they get my permanant crown in from the lab and bring it up to them then and have her look at the tooth that I think is the big culprit. until then thank god nicole gave me ibuprophen because i will be using it lol
anotehr update on the GI issue I have been trying to keep u all posted and I am now no longer eating onions cafine apples with skin on them or dairy and I am starting to feel better. I have started taking metamucil again even though it is roigh on MY reflux because of the orange flavoring in it. I will be asking the GI if there is a different type of fiber suplement that works the same without flavor in it.
My face is so sore right now because I am trying toonly take three Ibuprophen a day because they are 800 mg and I dont want my stomach to wind up sik any more lol. I just wish things would give me a break. I do not know if I posted this on here but I went to the hosp on oct 21 because i thought i had a uti well they treated for one again but guess what the culture was negative yet again. so I took yet another un needed round of antibiotics only to have symptoms pretty much stay the same and had me thinking i was in for another round until the doc said it was not an infection so yes and yet again the bladder pain got me. fun fun not at all. the only reason i go to make sure they are not uti is because i have had so may recurrent ones and it can cause kidney damage if it is one and it is left untreated so it is a loose loose situation. The only thing I hate is they could have called me and told me to stop the antibiotic when the culture came back but they didnt so i took all of them like a dilligent patient and did not need them.
I am still currently having both dogs which is fun lol they play constantly and nearly knock me over at least once a day but that is ok i guess they are company when no one is home for me that is a pluss

happy veterans day to all as well

i already posted onhere today but this deserves one of its own thank you to all veterans and those currently serving and also those many who have lost their lives fighting for our country. My dental appointment also went well It is not abcessed and it was a big piece of food stuck between my fillings that the dentist herself had trouble getting out so i gues my flossing would not have done the trick even though the food make it feel like I had a huge abcess bubble in there. i also think that my TMJ is bothering me again because of them doing the crown it gets bad when they have me hold my mouth open for a long time but I hate riding there so i usually try to do as much in one appointment as possible. well I think im done for today ill post again soon

the plan to get me feeling better is this for right now

Her plan right now is just to sit back and let the Gi do what they need to do as far as meds and other things and then if I need to see her I am able most of the time to be put in same day she said unless she is covering for a vacation. she is also letting the OB finish her testing and then we are going to go from their. she said that the docs will most likely give me a time frame when i need to follow up with her and we will go with that other than that I have no plans at this time of going back unless things go awry on me.
I did not have a urinary infrction the last time they put me on antibiotics either they just did it as precautionary once again. I am so tired of it and yes I am still having symptoms so I am glad the Ob appointment is comming soon.
she did also take the time to explan to me that the medication that we are going to try If I test positive for Ic may not work and in the end i may end up with a spinal stimulator implanted into my back but she also told me that was like step 12 and im only on step 2 so that was really helpful for my anxiety. it really honestly went well. I am satisfied witht he transition as it stands right now. And in all honesty happy that she is standing back letting the others do their job but not pushing everything else off onto me alone. I know if I need suport or evein if i have a question i can call her and she will do her best to help me. i am hoping that haing the suport system in place with make me feel more secure with my choices and other decisions. i did not knwo where to turn before only to my OB now she won't be getting the brunt of everything even though she was more than happy to offer any suport i needed as well thank you Jenny P for everything and to Nicole for making the transition for me very comfortable and easy.
Basically she does not want to step on anyones toes but she wants to know what is going on so she can offer her imput and recomendations as well.

first appointement with new doc went well

I had some anxiety about meeting the new doc but once i got to the point it went very well. I have her the updated info on the GI and now need to let the GYN know to send me results or send them directly to the primary so that they know what is going on with me. she was really good about just listening. i was actually able to carry on a conversation with her so that is a plus. Most of the conversations with the other were just her offering opinion and thats about it. Her reaction to my being having IBS she basically said that I have symptoms taht can not be placed any where else and that IBS is really hard to deal with but guess what she did not tell me I needed to learn to deal with it all on my own so that was a huge plus too.
I am now currently having a toothache so back to the dentist i go in the morning bright and early. Not really wanting to go but it is needed. I have been taking 800 mg ibuprophen every four hours when it is suposed to be sic to eight hours. I am so tired of feeling pain its so hard to deal with

feeling kind of lost in the world right now

I am feeling lost. I wake with cramps most days go to sleep with them. I feel like pain is taking over my life again. I want to do so much for one getting back to being able to babysit on the weekends. I miss that so much. I cant do it right now though cause I nevr know when the unbearable neasua is going to get me or the cramps that just happen when they decide. I am afraid to go far from home right now. i basically go to appointments and with my parents and my aunt and that is it. I have not even ben able to visit my firend in over a month because of them being busy and my issues boy think depression is setting in again aghhhhh. this is my least favorite part because for so long i fight against it but then every time it gets the better of me with each bought of pain. I miss being able to smile without having to force it out. I am just so tired sorry I am complaining yet again but hey its my blog so i guess i have the right ot do that.
My hip is bothering me again but that is my secret for now unless it gets to the point of not being able to walk I refuse to go through more hell than I have to. I think its just becausse it is getting colder and my spasticity has been increased lately because of the cold. i am hoping that if i use heat for a few hours tonight it will calm down some. It is so hard to have so much pain and little explanation for it sometimes it would be easier to have something that shows when they look for it at least it would not be iluding the docs anymore. and to my followers since i see i now have four brendan i like the new wheels Malayna i love the ABCs sweet girl I hope to get to know Brendan like I have Malayna even though its not a personal relationship and to steph if you follow regularly and have any questions about CP please feel free to shoot them my way and i will do my best to help you in any wany I can.

interesting time last night well early this morning

First off to sheila thanks for listening or reading my complaining lol. i went to bed fairly early last night and not too much was going on outside. Well got woke up around 11 or midnight with wind and no power. We never got power back until this morning after daylight. I don't like power outages. They are tough for me because i can not see well at all. When it first happens mom usually has to help me and get me a flashlight because i dont dare to move because I am afraid of tripping over a toy or even more so the dogs lol. that is one beg reason I don't think it would be good for me to live alone but then again if I did live alone there wouldnt be toys everywhere lol but hey its great at theese times to have my family.
I am hanging in there with everything. i am now currently having cramping because I have been starving all day today which is unusual for me. i am normally lately not really able to finish my meals so I have been picking at small ammpunts all day long. making some lunch for my niece and my little cousin and guess what im gonna eat yet again lol I hate this going from not being hungry to starving its annoying but i do the best to honor what my body and belly both want.
I have a headache this morning because of not sleeping well last night i was up and sown alot which happens to me quite a bit even without being sick. But it also had to do with a few phone calls that we gor around nine or so but oh well I slept as good as can be for what was going on last night and after lunch im going to nap a little with the igrls.

ahhhhh!!!!

I am getting so frustrated. Ther is so much I am doing to try and get through this and it feels like i am not getting any where. I have found i can not eat caffine and onions. I can not eat apples now with the peels on them. i dont know if i can do them without the peel raw but i can eat them cooked in apple crisp and stuff so I supose ill e experimenting with apples and cooking here soon lol. cooked apples seem not to upset too much. I am just getting tired of the constatn recurrent sy,ptoms. I am also frustrated because it comes and goes so often and each time it comes back I am in so much pain and so neasuated. I am about to run out of my reflux meds as well but thankfully it is close to the scheduled appointment with the new doc so I should be able to get right back to the schedule. I run out tomorrow and go in on wednesday . well I feel like I am complaining here.
Oh dont know if I posted this recently but my GI appointment is moved up to november 16th thankfully. It is with another doctor but I am hoping she can give me some information on this condition even though I have had it for a long time. i was diagnosed at the age of ten or so but it has been so long since i have had a bought like this one. I am just patiently waiting for my appointment and hoping that i get a couple more good days in here.

awsome day today

I had an awsome day today. i did not have any cramps at all. It felt so good. I forgot what it feels like to not have cramps. I just really need to figure this out because i did not eat much at all and i think that is why I did not have so much pain. need to figure out my triggers. Yep that is my goal

feeling stir crazy and nervous about a few things

I am still not feeling 100 percent but I am feeling better at times than I have in well over three months. I am hoping with lots of suport from people and friends and most importantly hopefully help from docs to figure this out I will be on the road to recovery sooner rather than later. I know that in order to get the suport i need I have to ask for it but maybe now ill be more comfortable asking for it I hoope.
I have gotten five get well cards from one of my friends and his famil. I definately feel the love and suport from his family and most of mine as well. I just miss not being uptight about earing. I am wondering if in the begining it was a virus and now it is causeing my GI tract to be in a flare of My previous IBS and I am just having a really hard time getting hold of it. I have not had a flare in a long time and never one like this one.
I am really kind of nercous about seeing my new primary doctor on the 10th I am scared that she will react to me as my other PCP did. I pray she does not because i rreally need suport. My other PCP was under the strict idea that I have had abdominal issues for so long that i needed to learn to deal with them on my own. I agree on the part of learning to manage them but also need a suport system to help with that. I have my family but none of them have the issues with the bowels like I do so there is no one really who can help me to change my dietary habits in the ways that need to be domne and i am starting to get the idea but its still too much for me right now.
There are a few things i have found I can not tollerate much
onions
caffine
and apples raw I can eat them booked but the raw seems to be a lottle much to digest right now.

On the learning curve yet again

I am currently researching IBS more thoroughly than ever before. i am so frustrated with this whole thing. I was diagnised with IBS at the young age of ten and have not ever had symptoms this bad in my life. I printed off some information on it today so when i read it later I hope it may shed some light on why this is happening to me. I do not understand the whole picture. I was just always told that I had this and if it bothered me to figure out which foods it was but now I feel like I am just gonna have to give up one all of my favorite foods I ate an apple today and got major cramps. I just dont know any more. I am frustrated and again ready to just let it all go. i am sick of the constant fight to get answers and mostly just tired of the pain

had fun last night

i had fun going out with the kids and I even got a couple pieces of candy lol wasn't planning on it but one of them was my cousin lol and then I got a piece at a store we went to. I did dress up I was a silly looking clown just had the face done and that was it My nephew was elmo from sesme street and my niece was a butterfly. How did malayna like trick or treat if she went I know some things she is very uptight about with her cision and things so hope she had a fun halloween too

I got your hug and an update on how I have been working to help myself through this pain

thanks sheila i neeeded that virtual hug my month is going to be full of torture I have an appointment on the fourth which is the usual appointment to help me deal with all of this and get my pent up feelings out then I have another one the tenth for my primary doctor and then the s6th for my catheterization for the potassium sensitivity test then the 18th is the gi follow up with their murse practitioner. I ma not ready for november first tomorrow at all I need a break for a while for sure. I just can't wait till this is over iwth. I have been keeping a food journal to see what foods upset my stomach and have as of now come to the determination that any form of eating is not good. Onions are a trigger food for me thoguh so there is one i will no longer be eating other than that have not found others yet but I am workiing on getting to the bottom of this yet again on my own. No one said to keep a log but I am not going to live like this forever. I will restrict my diet until I can not restricy it any more if tht is what this takes. i just need a break from it all. I am happy to say that i will be going trick or treating with the kids no matter what it takes. this is something I want to do i mised it last year and not gonna miss it this year

Frustratied to no end today

I have been in extreme pain yet again today. I called the GI to see if they would help with the pain. They refused to do anything becasue it is not solving the issue so they moved my appointment up but yet it is with another doctor. This kid of irritates me because now they are saying every symptom I am having is related to IBS. I dont understand how that is because I have had IBS for a long time and gerd as well and vomiting is not a symptom of IBS yet it happens every time or most times i have really bad pain in my stomach yeah kind of confusing to me. I do not feel that this is Ibs I feel like it is something different that is not showig its full evil yet. We shall see I guess For now i am stuck with it and will be forever by the feeels of it. it fefuses to just leave me alone.

very long day today

I had a long but productive day today with medical appointments. I finally got my temporary crown done and I am down to needing only three more fillings and i will be done with the dintist again for a bit. until I go to my next cleaning and ecam. they will find more cavities they always do. I think mine are a combuination of all the medication that i have been on plus i have reflux so any how i spent nearly tow solid hours in the chair today.
I got almost through the appointment and when my mouth was finally empty enough finally told the dentist that i had to go pee she laughed and told me nect time to raise my hand and shell empty my mouth well I should have thoguht of that but that is usually the signal for me feeling pain so I did not dare to do tht because i figured she would stick me again lol she had to give me two injections today because the appointment was so long. I got my temp crown and another filling done all in one sitting. The crown process is deffinately a gard one. It was kind of pain ful because when they make the crown they put some thing inthe area right near the gum line and pack it down to make the shape of the temporary crown so my mouth is pretty sore right now but i am satisfied witht he end result for the temp crown and my mouth should begin to feel better really soon.
I made a huge mistake of eating when iu got home evidently today is going to be one of the days where my tummy really hurts after i eat. I had oatmeal this morning wheich went ok but I didnt feel quite right after so I stuck to drinking tea until I got done with the dentist to prevent neasua because that would have complicated things more than my needing to pee did. I had soem left over pizza when i got home and that was a huge no no. I dread eating and that is not normal. I am so confused right now. Just hanging on until january unless it gets to the pont I am not able to. I am wondering if that will be sooner rather than later ans the pain is comming on full force again on me it has been ok for a few days not now though.

Celiac negative thank god

I got my labs back yesterday. I found this out late last night when mom and dad got home and I am very happy on that note. the only thing is I have to keep going like this for another three months until I have a follow up in january with him. those are his recomendations so I guess I have to follow them rihgt. i just dont really know how I am gonna get through another three months like this. Lets see lots of patience and probably days of being sick but ill get there.
Dental appointment tomorrow. those are getting easier each time lol. this one os for my crown well the temporary one and another filling It is going to be a two hour appointment no wonder I know my dental staff well lol.
I also have my usual weekly appointment tomorrow with my counsoler but that is easy. It is just a totally busy day for me but that is Ok Ill get through yet another one of my great days not so great honestly. I have times where my family asks me if I like going to the doctors because I go so much. That really hurts because that is not the reason that I go. I dont think people even doctors understand what a life with multiple chronic medical conditions is like.

here is the list of what conditions i have that I consider chronic feel free to post your imput if they are or not
Cerebral palsy
endometriosis
crecurrrent undiagnosed or unexplained bladder pain
recurrent unexplained abdominal pain with bowel inflamation on biopsy
visual impairment so i can not drive to enable myself to easily get the help that i need cant get to appointments without assistance major stressor
GERD although it is well managed most of the time

There are probably mor but hey thats enough right. I am so thankful to have the family that i do because they do help me and that is even when they do not feel that I need it. Thank you to mom Jess Auntie Elsie and many others for everthing you have done for me. I dont know where I would be with out all of you love you guys so much.
I had kind of a long day yesterday but it was a good one. i am still recuperating from my bladder infection which i think was a little closer to a kidney infection but not quite cause i usually dont get back pain with them. But I had my lil two year old nephew so I asked auntie if I could come to her house for the day until near bed time and she was good with it. i also needed assistance because he needs drops and cream in his eyes from his surgery and with my vision and his fighting it si not a good combo lol we went for a walk and he rode in the wagon and i saw my niece ride her bike. she has been doing it for some time but this is my first time seeing it. it was another great day despite the fact i do nto feel like myself. when you are someone who lives with chronic conditions you learn to take all of the little things and enjoy every single one of them. i am really excited for halloween so I can go trick or treating with the kids I hope i feel well enoguh.

firsy appointment with new doc scheduled

Scheduled a two week appointment for the UTI with the new doctor to see if my urine is clear. Lets hope it is. Started the antibiotic this morning after waiting to get it. luckly the doc is close to the pharmacy lol two trips for the price of one. Other than that not feeling tooo good right now but hanging in there.
I am watching my nephew today other than that not too much going on. I hope this goes away soon my back is hurting me pretty badly but it should go away with antibiotic I hope.

oh my word sick again and yes it is another issue

Well my stomach has been hurting in the bladder are for twi dats now i thought it was just another episode of bladder pain but today my back started hurting so I gave in and went to mercy express care. well guess what its another round of medication for me and I am officially in between docs right now but when i go to get my medication tomorrow for my UTI yes so much fun not ha ha I need to make an appointment for a week from today to make sure that my uti is cleared. I am on cipro for the next five days so we shall see. i am so darn tired of all of this and i know the reason i am having infections is from being so fetigured and stuff from the abdominal pain I am ready to cry honestly and as for having the determination to try the diet I do but I am just not sure i should start it yet in case they decide to run mor eblood tests. dont know what the next step is from here just hoping its not telling me I am stuck this way for life ahhhhhh yep there is a dreaded scream those have been going through my head alot lately. I am so tired right now gonna feed the puppies and head to bed soon as mom gets home I was suposed to do the dishes today but i got everything else done and started the dishes so hope that is good enough

trying not to worry

i know it is better to wait for labs to return but i think no matter what the labs say I am going on the diet because some people do not show the antibodies in the blodd and only show on a gene test or so I have found through my own research as most docs are not willing to be of assistance at least not he old one waiting to see the new one and praying she will be of more assistance. I just really dont know what to do tired of pain tired of being sick I guess just sick and itred of being sick and tired. Basically at this time I am willing to try anything to see if it releaces the symptoms een if it is not positive testing for celiac I am ready to grasp at any possibility or as my other doc put it any straw to try and help myslef since others can not seem to be of assistance thank you sheila for being such a dedicated follower i really apreciate it so much

had fun yesterday despite still having stomach issues

Well I am still stuck in the pattern of being sick but I was able to have fun yesterday with the kids. I am glad too they keep me going for sure. The only reason that I was able to do stuff with them though is because I only had a scrambled egg in the morning then dinner. I felt really bad after dinner again. any ways we made scare crows for halloween it was fun filling them with leaves. I think I had more fun watching two six year old gorls burrowing through the leaces like ground hogs but thats ok too they had fun and i was laughing. I miss being able to be myself I just want to be able to be free and not have to wonder when I am going to need meds for neasua and vomiting not so much pain any more. I have just been crying through it. I hate the way they make me feel and no matter what it takes I am determined I am not going to live in pain forever and it will be without medication. I do not have to be bound to pain like the other doc said and i will not take that as a satisfying answer. I dont have to and i will not. yes here is my attitude comming back out but I gotta have it in order to get through each and every day. It is an internal attitude I dont try to give it to my parents or relatives but sometiems they do get it lol.
I am not so sure that I anm really ready to attack the gluten fre diet. i will be doing this alll on my own as no one is willing to make the change with me. It is so hard to think about right now. I want the labs to show somethng but then again do I really. I will be more issolated from people than i already am. This isolation will be in my own home though that I am not used to. I don't know what to do if it omes down to me needing this diest. I am afraid I know that my fmily will suport me with it and get me the things i need but as far as having someone be going through it with me nope probably not as no one else has any of the symptoms like i do so confused still and have over a week to wait to see the results of the labs so we shall see next tuesday or so the begining of november as next sunday is the end of october cat wait for halloween i am gonna try going out with my niece and nephew to get myself some needed excercise but it depends on how I am feeling

looking int the gluten free diet even though my labs are not back yet

I am so tired of feeling sick. i am currently researching the gluten free diet since my research has shown that celiac labs often come back negative when they are truly not. I dont know how that works but it says os right on the page that i was reading about celiac testing on so we shall see and then i am still trying out the diet I think. It really depends on if mom is on board with all of the different things she will need to make sure are not in foods with me because i have visual issues and it get hard for me to read the foods. I just need to try to get feeling better. It has been well over a month now and the only one who is even attempting to help is the GI but he is tough to get hold of since he is a specialist. i can't schedule an appointment with the new PCP yet as it takes a week or more for them to recieve my records but I will make it till then. Ive mad it a month now. I just really pray she is willing to listen and try to help me despite the fact that we have no official answers and really pray she does not react the way my current or old primary not sure how that works as I am afficially changed but the old primary still has all records I am basically in between right now lol its nt really a good feeling when I am feeling so bad. I just had to take a med for neasua to help that so i did not throw up what i basically forced into my stomach. the other doc that i was seeing said on tuesday that if i did not feel like eating not to make myself because it was nothing to worry about. um it is somehting to worry about whenf I have not felt up to eating in over a month and I like gale ot the old facility and she made me promise that I would eat so i did not get sicker she does care i will miss her I have alot of thanks for her she helped me get my official diagnosis of endometriosis she reffered me to my Gyn thank you gale so much you will always have a spot in my heart even though i will not seem you any more for my care you rate very highly with Jean and Robbin thanks again. I am sad that it came to this point but I am doing what i need to do to get the help I need

baby boy did great

Aunties lil man was a trooper. He let them give him gas without fighting better than me at his age I started fighting early I guess. I am just glad he did wonderfully. I knew he was in good hand because i had surgery done at the same facility and I know the doctor who did his surgery well. He was my pediatric optomologist too it so funny we have the same doctor. I dont think he would remember me but then im not sure ans I accidently kicked him when he was putting drops in my eyes. He scared me even tough i knew they were comming the lovely startle reflux of CP I did well this round of drops though I took deep breaths and concentrated on something else it worked yay. thank you to doctor Berman for taking good care of my baby boy and to all of his surgical staff. I pray he willl only ned one more if any because it is to treat lazy eye so he may need another as he gets older and his muscles grow and change. I cant wait to see him and give him huge hugs for being aunties beg boy aunties proud of you and loves u bubby

Baby boy has his surgery tomorrow Auntie is so nervous

My nephew has his eye surgery for lazy eye tomorrow. i am so nervous for him. i wanted to go in with them but sis is staying the night at his dads so they can make it on time. I have been a nervous wreck all day and it wont be any better until i hear he is finished. he is not my baby but i know how it is to go through surgeries. the docs try to tell us that we dont remember things from child hood but i remember things from the age of three or four so tht is not true. i hope for his sake he does not have a memory like his auntie. good luck my baby boy auntie loves you and told mama and daddy both to give u extra kisses and you will get more when you come home your aunties boy. Know he cat read but if he were here id be tilling him this too he is so special as are all of the little mericles including you malayna

Its official

I am bringing the paper work intot eh other doc as soon as my aunt gets here. I am still going to see my counsoler tere and that was a huge stressor not knowing until today weather or not I could. she told me that not all patients of hers have their primary there adn she would continue to see me. thank you to Catherine for being there when i need someone to talk to and i know it will remain confidential thankfully. I will be seeing a nurse practitioner at the new facility dont want to give too much info yet but that is the scoop

Thiking I need a fresh start

Well i told mom about this past appointment with the doc and she and I just kind of both looked at each other. I think we were thinking the same thing. I have one doc telling me im losing weight another telling me im gaining and they have access tot he same records the doc told me that if i did not feel up to eating i did not have to eat. i have not been feeling up tp eating for some time now. I have to eat something to keep my strength up I cant live ob n fluids. Moms raction to that was not a good one. she was like ok so now its fine for you to become anerexic because you dont feel well. I know that will just cause more issues so i will be continuing to eat like I promised the other doc that i see. I will not make myself sicker. I need to get better.
So I think I have made an official choice to get a new doc. I am not sure when I will officially make the change but soon most likely. I have the paper work filled out in my posession and now im just waiting to bring it back until i talk to My counsoler and let her know what has happened and see if i can still continue to see her there and if not ask her to give me names of others so I can continue my health care. I am really hoping that I can keep seeing her because i have really bonded with her in the past two years and i dont want to do that process again. iI will keep you all posted

upset not a very great appointment for me

Well I had my follow up with my primary today. Like many appointments lately it did not go very well. she seemed pleased with the outcome me not really. She started off by askeing the usual questions and then she was like how are the female things and I told her that they have been doing better as they have except the bleeding that I am having now but that will be gone again soon. She told me that she would get teh labs for Celiac and then was like well it sounds to me like you are just going to have multiple chronic abdominal pain issues to me because i asked her whey the GI was repeating celiac testing cause i think he took it when he did my endoscopy im not 100 percent sure adn she was like well I think he is grasping at straws tot ry and help you. "GRASPING STRAWS how the hell can he be doing that I have only seen this guy four times first one was initial visit second was endoscopy third was basically another initial visit and then the colonoscopy. I mean how can she say something like that I dont feel that he is grasping straws maybe im just losing my mind but are there not other conditions out there I cant be the only one out there going through this.
I dont see how she feels that I am going to have recurring abdomial issues either I am getting the endo under control I have reflux which is well controled when and if I can keep my meds down. and the bladder pain that I know i have told her about she acted very surprised over. I am so upset right now that i broke down and in the end of the appiointment or was it the begining she was liek it is not fair that this is happening to you. i dont need pitty i need help. I feel like they think I am crazy i really do I hate this whole situation.

frustrated

I still can not eat without pain and it is really making me want to cry because I already hate eating because of my reflux so now its even more interesting. I have the doctors tomorrow and get the labs done. I think weather or not my labs are negastive I am going to go with the gluten free diet for a while to see if it helps but have to wait till the labs are done so the reaidng is accurate. Even though some can still test negative on the labs

Heres my little man

and here is my jake

new pics of my two boys

Jake and Jeter
As those who follow my blog know this is not Jake this is his crother Jeter

A milstone for Jake

I was a very proud mama to mr jake last night Mom and i decided tha it was time to let him sleep out of his crate for the first time to see how he did. I have to say he slept all night out and better than I did I woke up this morning and could not fid him he was in mom and dads room laying on the toddler bed in ther that used to be for my niece and when he saw me he came out and thought he was gonna be in trouble cause hes not usualy allowed in there cause he chews but I checked quickly and nothing was bhewed so he got lots of kisses and loves from me
The best part was to be able to reach down before i fell asleep and pet him cause he was right nect to me no bars between. I love my boy i hope he continues his trend of bing good cause he will be able ro be left un crated. I have hated using it since day one but the funny thing is he likes to go in it for his time away from his brother which he doesnt take often usually Jeter is asking to go out to get a break lol He is smaller than Jeter but much more dominant. They are doing great together hope to have some new pics of them together up soon if jake will let me take them he doesnt like the camera any more hes a little crazy ha ha

my week has been fun lol

Well We now have my sister living back home for a while but thats ok with me. the fun part is haveing both Jake and Jeter here with us. They missed each other but man are they ever hyper but it actually seems to be helping Jake learn to be more relaxed and not so hyper with me and the kids that is good maybe I can get rid of some of these battle scars from him knocking me down so people will stop asking what happened to me ha ha.

I had a dental appointment today as well. I feel like i just bounce3 from doc to doc and that is my life at this moment. I had a cleaning and two fillings done I am not really crazy on the dentist but I know that i need to keep my teeth for as long as I can so I will do it. I go back for another filling and the temporary crown for my root canal on october 28th so I am glad that is finally getting done with the root canal has been done for some time now and they have been wanting to crown it but they want to get the fillings done before hand because they do not want to have to do another root canal. I dont really want another one even though i did not feel it. I have another dentist for now. her name is doctor chadborne.

that is abou all for now I will update again on tuesday after my appointment with my regular doctor. Oh and here is me with my glasses

OK Saw my OB today and feeling a little more relieved

I saw my OBGYN today and we talked about my bowels bladder and the dreaded endometriosis. she said that it is definately possible to have endometriosis on the bowel but I had minimal if any endo there less than a year aog so it is unlikely that endo is causeing my bowel issues and further more she confirmed that It would not cause the inflamation on the inside of my bowel revealed by the colonscopy I did not think that was possible but better to make sure.
As far as the bladder goes i am in for a lovely time next appointment because they are doing a potassium sensitivity test which involves being catheterized and them instilling two solutions into the bladder one with poptassium and the other is just a basic saline solution. this is to confirm that I have IC If i do have it I will feel more pain with the potassium solution than the saline. I dont know but i do know some answers to some of this pain would be nice. And again she said that it is possib;e to have endo on my bladder but I had minimal leasions there as well and they were removed to the best of the ability so it is not likely endo and endo does not explain the blood in my urine on both urine test and some that I have seen with out having a cycle of menstral bleeding. I hope that i figure at least one issue out here.
As far as medication changes gio I am staying with the currrent one and when i start to spot I have to give my body a week to reset my uterin lining as she put it because staying on continupus BC of any sort causes the uterine lining to become thin and irritated so It may need time to reset itself if that makes sense It does to me I understand her reason for telling me that before lol Basically it all makes sense now. So I may still be in pain but i am much relieved to know that i will not be getting another surgery yay thank you lord and thank you so much Jenny for being there to help me and talk about everything. even though i know she will nto read this or at least i dont think never can be 100 percent will gonna go rest now I have a cold now to yuck

A good day today

well my day started off ok I went to muy usual weekley appointment with my counsoler. I talked to her about the appointments and anxiety prevolking issues. After that I came home and my dad asked me to make a sheapards pie for dinner so that is what i did.
After I got home from my appointment the puppy knocked me down and bent my glasses a bit but they are still wearable. I made dinner and now I am making a birthday cake for my sister. I am making a cake with a brownie center because today is her birthday. I have one of my friends little girls until sunday because she wanted to come over. I am exahusted but it has been a good day.
I have been cramping again I hope Im not due for yet another cycle. I am not sure if it is my bowels agasin. sometimes it is so hard to tell. I dont know any more because it is not severe pain yet thankfully. I am hoping that it does not get bad because mom will not be happy if she has to watch the kidos lol she will if she needs to though. well that is about it on my positive day today

Apost about my puppy

Yeah i know this is suposed to make me feel better lol. he is very unruley and beats me up alot lol. He is seven almost eight months old and knocks me down but then in other times can be very loving like when I am crying he gets on my lap and kisses me all over or barks at me to make me laugh. He is a good and bad dog all at the same time. He has a horrible habit of chewing my shoes and that is not fun at all lol well there is an update on the puppy I love him but he is so much work lol

ugh just tired right now physically and mentally

i just feel like I need to sit and cry right now and i have been doing that. I feel so bad with my stomach I am afraid to take my daily meds becase they just come back up most of the time . I know this is not good because of my depression but it is pointmetss to take them and throw them up I have been throwing up normally at least once a day now so I am pretty frustrated. My cramping in my uterus and ovaries is calm for now the bowel is still active though. i regret eating most times after i do I thought eating was suposed to be slightly enjoyed not for me. I hate it and honestly wish i did not have to but i am keeping a promise to a very special person right now you know who u are and i doubt u read this any how.
Gale is the one I am keeping the promise to she was very concerned at the wieght difference and gave me meds to help the neasua but most times they dont so I just dont know what to do any more this is so hard for me. My stomach hurts because i am hungry but it hurts after I eat to so I am stuck here for now. I really feel stuck. I know this is soem due to depression but who wouldnt be depressed after two trips tot he hospital a few trips to other docs and now this needing labs is a little much to take in right now and to have the docs in the hosp auttomatically assume that it is my endometriosis and beign told that morphine is making me emotional i am totally at a loos and ready to give up here but I will keep fighting for my babies Bryan my nephew and Faith my niece they keep me going and give me a smile every day

Labs are to rule out celiac

Well I cound out what the labs will rule out. They are torule out Celiac which i pray I do not have because it intales a glutien free diet in order to treat it. that is found in so many foods. I dont know i guess it will be a huge change but If I have it Ill have to deal with it

OK really confused right now

I called mom a bit ago to tell her that I was not sure if I would be able to get my room cleaned or not today and she proceeded to tell me that I had a paper in the car from the mail that stated I had to get blood work done and when i asked her which doctor it was from she told me th GI.
I am really confused because now they are stating that my bowel looked inflamed a little when they told me at the end of my proceedure that it was normal. I am frustrated. maybe it showed inflamation on the biopsy i sdont know I am so confused. I have been thinking I am in the clear and that it is most like;y the endometriosis again but now Im back to well maybe not. I don't know I feel lost right now and honestly despite everyone offering their suport and kind words very scared and alone. I dont know exactly what they are thinking it is or trying to rule out because mom could not read the word so ill have to read it later wehn she gets back here. I will know more after the 19th wehn i see my PCP and have the blood work done after results come in I will know I hope. This is so draining. I dont know anymore well thats it for now hope to have more news soon

new glasses

I got my glasses today. They are going to take some getting used to. I dont like them much lol. I hate them on my face that is wehy i did not continue to get new perscriptions but they do help so I will just have to over come the not liking them part I guess may be easier said than donebut Im going to try.
I went to my nephew's second birthday party yesterday. had a pretty good time until I got home and proceded to get sick and throw up everything i had eaten. I am so tired of this routine. I even took medication for neasua to prevent it from happeniong but did it work nope aparently not. So frustrating right now. I hate the whole ritual of taking meds to prevent something and then having it happen any how

Another appointment today

I feel like a darn test dummy woth everyone polking at me. i had an appointment with one of the two docs that i see at My primary docs office not my primary though. this was for follow up after the ER visits. She said there was not much more she could do as i had anticipated but gave me a different medication for neasua since it is returning with avengance since I started putting solids back in there and told me to call her and let her know how its working. I am just at my witts end with everything
Here is her imput on what it most likely is and deffinately not what I wanted to hear. I am not angry with her she is very good at what she does and a nice lady so let me contimue she has a stron suspission that it is yet anoter adhesion or scar that is being caused by endometriosis causeing the paun. she is hoping that it is not. I will not know unless I have yet another trip under the knife as they can not see scar tissue with any of the fancy machines out there lol so I will post as to what is next after i see the GYN I doubt another surgery but if it continues like this I don't know for sure because she does not want to do any more due to the fact that surgery itself causes scarring but losing nine pounds since july is not the best for me either

It is done and over with

Well things went well yesterday. I had the loopy meds lol the only thing i felt was cramping near the end of it and then by the time he finished and i got to recovery I was asleep. They were kind of concened that it worked so well. Thankfullly my aunt has been through it with me before so she knew what to expect. I had an upper endoscopy two years ago at the same location with the same DR.
Any how they did not find anything wrong but took biopsys to make 100 percent sure. I am kind of frustrated cause I am still at a loss for my lack of apitite and pain when i eat. But at least its not colon polyups or cancer so I am deffinately relieved no colitis was evident cisually wither

waiting waiting waiting

waiting for the appointment is not the best part. I want it over with So hungry yet when its over ill be lery to eat because of fear of pain. just don't know anymore im nervous either way just want it done and over with well thais it for me for now ill post to let you guys know how I did

remind me never to do this one again lol

Well the laxitive prep has started. Oh my god yeah this is deffinately not fun. I think if it comes down to it i will keep my stomach pain rather than do this again. Liquids since sunday now push everything out even thogh there is basically nothing in there. taken two dulcolax this far at five have to mix miralax with 64 ounces of gatorade the 238 gram bottle and then drink a glass every 20 minutes until gone and then at nine two more tablets should be a sleepless night lol.
oh and sheila was it you who mentioned meralax in an earlier blog post if so yeah I can say that as of today I have officially heard of it and used it lol
I am suposed to continue using it if i do not have regular bowel movements as well. Should have just gone with the gut instinct to try it after you mentioned it. Oh well I am now unfortunately it is for the colonoscopy prep

liquid diet has begun for me

Well its sunday and today starts the liquid diet in prep for tuesday. Nothing to eat until after the proceedure. Normally it is one day before but with me they made it two because of my history of chronic constipation as they put it so it should be fun for me not lol. I went yesterday to purchase all the stuff i needed and also purchased my new glasses. they will be ready the ninth of october
It was an interesting time I walked tot he vision center of walmart and mom handed the perscription to the lady and she was like oh my god this is a hefty perscriptin who is it for and mom pointed to me and she was like you can see me. I told her yes and then she asked me what she looked like and i said she looked like her and than she asked me what her name was and i told her that I could see her but could not read the name tag. So she got everything together and told us the price of my glasses. quite expensive since insurance does not cover them. almost three hundred dollars because they have uv protection scratch resistant coating and transitons lenses. All of whih i need due to glare issues.
I tried on so many pair and most of them i did not like so i finally settled on a frame. I also have to have the polly lenses because they are the thinest lenses due to the fact that my perscription is so strong, not much else to report right now
I was really honestly shocked at the reaction of the vision center employee. I don't know any differently this is normal for me i guess my vision is pretty bad lol Oh well I can deal with it have for 24 years now

im still here lol

I had my eye appointmetn yesterday that went well. I have to get glasses and go back in a year to see how things are going. Had the GI appointment as well I have to have a colonoscopy to see if it is my colon or not. If not i guess they are marking it as refered pain from my endometriosis but I have never had pain in my stomach and bowels like this. I am at least able to eat now but it is still uncomfortable have not taken any medication yesterday or today because i do not want to have issues with being abloe to stop using them I can't say becoming adicted because i have pain but I have had that issue after a surgery and will not forget it and will not do it again I am so tired right now I just need a break again.

another trip to MMC

I wnet back into the hospital yesterday after I talked to my primary and she said that she could not see me unless I went into walk in and saw someone eldr do basically she was unable to see me and if I could not wait to go into the ER so that is what i did. I went into the ER and they gave me meds and medication to take to get my bowels moving again. i got a little relief but not much GI appointmetn tomorrow eye appointment today everything crashes down on me at once yet again

horrible weekend continues and yes its tuesday

tomorrrow should be an interesting day for sure. I have an eye appointment along with severe pain still. I am still on the pain medications waiting for return phone calls from my primary care doctor and the GI specialist debating weather or not to head back to the Er short post gonna go take more meds and sleep my life away its the only way i dont hurt right now miserable is the word im using but its more much more than that

horrible weekend

My pain and cramping got so bad that i went to the er again by rescue. I was honest with everyone and told them I had endometriosis and that is automatically what tehy thought it was. nope it is not because endo pain does not get worse when i eat if I am neasuated that does but the pain was horrible pain every time I would eat or drink. and for the most part still is. well still have no clue what it is they did another CT and u;trasound and then said well ther is nothing more that we can do. They said that no GI doc could see me until monday and zI could not stay there because i was not bleeding from my stomach. Morphine was not touching the pain for anything until they gave me like four or five doses. Oh well I am home for now On strong pain meds and antineasua medication which i need to go and take now before it gets too bad just ate a soft taco shell I have had that a yougert and bread one slice all day and sips of grape juice yeah nothings wrong my butt here we go round the hellish circle of docs again

its finally thursday

this week really seems endless. I am exhausted and in pain yet again with my ovaries and palvis and yes nladder. basically my entire belly from belly button down is burning to no avail. My back is going along too. Lets just say I know no one here who follows has endo but for anyone who does don't let your doctors push your complaints to the side.
My Ob is really good and thankfully does not do that she takes eberything into consideration even the things that dont concern her like my legs and spacticity. Well I am going to go and try and get some dishes done i have an eye appointment comming up on wednesday kind of looking toward knowing eberuthing with the eyes are good minus the stuff we already know i have nystagmus and astigmatism.
I also calle the doc to get my migrane perscription filled again and they had to change it becase insurance requires that their members take imatrex before any other medication for migraines. dont ask when they changed that one lol but here we go with another medication lets just hope either it works or i dont get a migraine lol