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