how much do ppl realy expect one person to deal with

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

yellow shirt day 2012 for endometriosis

I am in this video not sure which minute segment but look for me in my yellow nike shirt im proud to be a sister to so many

trying to deal with all this change

this diet is a huge change so far though i have been sticking to it but its still tough I have not gone over 1000 mg of sodium and my daily value only needs to remain under 2000 so i guess I'm doing really well it takes so much effort to do this I have to read every label and choose everything wisely especially if i want a snack at night can u believe that four Graham cracker sheets have over 300 mg of sodium makes me not want to eat them much anymore I had four the other day they tasted good but then i was like I'm glad that did not go over my limit cause four sheets of Graham cracker isn't worth it when i can eat all the fresh fruit and veggies i want to and also have found that canned fruit is very low sodium as well. Bread is another kick to a low sodium diet good lord the bread that we are eating now has 170 mg of sodium in it and that is wheat I can not imagine what is in white bread they say wheat is so much better I'm not too fond of my kidneys right now as far as i know no loss of function but now i need to make sure that all medications I am taking are OK with nephrology Life just seems so very frustrating right now
i have my urology appointment Monday which i am dreading I want relief but that has been coming at quite a price for me lately. My ovary had to be removed to relieve my belly pain or some of it it still is not completely better and I am prepared for it to remain as it is but that is fine I can live with it. Now my ankle has been bothering me and its becoming difficult to walk what does that mean another surgery i am so afraid that when i go in to the urologist he is going to find some invasive thing he wants to do i have had two cystoscopies both of which i was asleep for please no more i don't want anymore torture i hope all of my fellow readers are doing well and my prayers are wit the Davidson family as they go through a tough time sending lots of love to u

ugh i hate this mood

So stressed scared and everything all rolled into one i hate feeling like this and my natural reaction is to push everyone away. I just noticed this morning asking me if she upset me I had to message her and tell her no it was not her that did anything at all it is jsut my way of dealing with everything i feel that suport is important going through all of this but sometimes I just get cold and just dont want to talk i feel bad because i made her feel bad I know she will not stay angry with me but I feel that this is a very important post to concentrate on because it is a part of the emotional aspect of what any chronic illness does to a person Just had to get that out I hate feeling like this it is so hard

kidney specialist done for another year I hope

Well i had my final appointment for this week today kidney doc. good news is im still here in the retrospect of kidney stuff no need for any major treatments but I do have to follow a strict low sodium diet of less than two thousand mg daily. Might seem like alot but it isnt when litterally every single food you eat seems to have sodium in it. I also can no longer thake ibuprophen or pyridium anymore ibuprophen is the only  medication that helps with my endo pain and pyridium is to numb the bladder so I am not a happy camper today but also I did find a few of my favorite foods have no sodium in them apple butter has no sodium in it and peppermint tea and chomomile tea that i buy are clear of sodium as well. i am at a point right now that I just feel that I need a long vacation everything was going well with the ovary and now here goes round number i dont know with negative stuff hugs to all of you

Orthopedic over with not a happy camper

here goes surgery again joy. nurologist isnt seeing me because it is caused by a tight muscle and baclofen will not help it only helps with active spasms phsyatrist is also a no go so here goes surgery for tendon transfer achilies tendon lengthening it is scheduled for may 34th and i will be non weight bearing for eight weeks in bed for at least the first four the joys  I am not ready for this one  at all i feel like i am reliving my past over agian in my present not a good feeling  the doctor said that i owuld not need further surgery after the last one but look who was wtong again i dont know why they say things when they really do not know how our bodies are going to react we are not all the same we all have different outcomes with this but i was informed that if I do not have this surgery I will continue to tighten and lose my ability to walk so It is needed however not accepted yet as It was just scheduled this morning the scheduling person told me that I did not have to schedule it well if I dont schedule it now I wont lol so we did just that

nerves setting in and trying to get used to this new blogger set up lol

I know i have posted from this set up once or twoce now but it still gets me a little lol i will get used to it but it may take time as most things do. Changes liek this take alot of time for me to become accustomed to because of my cisual issues I get used to one thing and its tough to adjust and figure out where everything is again the old blogger set up I didnt really have to read to post but now it is all changed again so I have to really read and it puts strain on my eyes hoping it gets to be as easy for me as the old format.
Ok so onto the tother portion of the title why am I a nervous one today well I have my orthopedic appointmetn tomorrw and I am very afraidn he is going to say surgery as I have not heard from the physical medicine doctor yet and nurology will not see me so I am not ready for another surgery yet but also have fear that if i do nothing I will lose my ability to walk and I do not want that so I see a though choice comming in my near furure prayers that tomorrow isnt schedule surgery day hugs to all

Called the orthodedic again yesterday

i was suposed to hear from the physical medicine doctor by the endo of the week still have heard nothing so called the orthopedic again and the person sent my demographics over so i contacted my primary care physisian to get the referal from them it is a pain in the butt having to do all of this crap just to get needed care bunch of crap honestly If i didnt need to see the docs i would not be so Im a bit frustrated to say the least. Really struggling with alot of ankle pain and i have a huge fear that if something isnt done soon I am going to lose teh ability to walkas I am able to walk right now but I have alot of pain durring walking and after slthough I have been pushing myself daily to walk or bike for the most part i dont know how long i am going to be abel to continue before the pain gets to a point where i can not ignore it Now the person that i spoke to yesterday was suposed to leave a message for the other one to call me to find out if it is worth my time to go into portland on tuesday where nothing or most of what he wanted done before hand has not been done

still waiting to hear

Sheila i just saw your comment yours is covered by insurance which is great but alot of things here that are covered by our state insurance maine care for lil ones are not covered for adults even with disabilities which unfortunately means me we shall have to wait and see there is no way i am getting in before my orthopedic appointment on the 24th i have been doign all pt that I had from every pt that i have seen and so far it doesnt seem to be doing much in the way of changing the contracture i guess we shall see ugh i dont want another surgery that is for sure. Odly enough since starting to do the things i need to do to get healthy again my knees are hurting me they used to hurt alot back in school when i was forced to do pt not sure if it is related or not but I guess knee pain vurses surgery isnt a tough choice Ill take the knee pain

hum need some ideas from my Cp friends

yes this is my second post for today lol I am looking for some new bands to do my PT with my PTs in the past have provided them but I have not been in a long time and I am not sure what teh bands are called or wher to begin my search to get new ones mine are still working at teh moment but they are pretty well used here are som pics of what i am looking for if anyone has any ideas





these are the two things i am looking for or ideas for something that i can get that would work the same teh Tube shaped green one is used to put over my door and do pull downs or around my bed post to do pull backs the band one is used to wrap around my knees to do clam shells and the Penguin march I will get mom to take pics of these streaches at some point soon so u have an idea of what I am talking about but ideas of where i could get these items would be apreciated I have no idea where the nifty PT people get them but I need new ones and ones with different resistance now lol thank you all

update good news all around

I am still waiting to hear from the physical medicine peopel to see if my insurance will cover the service I am hoping they will since both of my dedicated followers whose lil ones have CP have said they are very helpful. I guess we wait and see and hope.
On the endo front things are going very well minus a small scare i thought my IUD had expelled thankfully it had not yay for that I was afraid as there are not many options for treatment that have worked well for me thus far with the endo. Now the cramping has calmed again for the time being this cramping on and off and spuradic bleeding can go one for up to six months maybe longer but it is still not a severe of bleeding as I was having on the nuva ring so over all I am a very thankful and happy lady right now I am thankful because my doctor listened to me and felt that my decision for the partial hysterectomy was the right now. It was only one tube and ovary but It was still one of the hardest choices I have had to make as of yet. I wanted the possibility of pain relief yet was so afraid that there would be no change i thought alot about it and nearly backed out toward the end but i have no regrets and feel so much better.
I have now started doing my PT again I know I should have been doing them all along but its tough to tighten muscles to strengthen them when most of my issues are weak stomach muscles and tight leg and arm muscles. I could not tighten my belly for nearly 2 years because of the adhesion but I can now freedom is so awsome. It is litterally an internal freedome now It isnt just the fact that I have no pain I can move with no pain i can walk I can lift the babies to hug them aagain with no pain. I now realize how much i was missing out on and that makes me want to cry. I however am not going to dwell on what is lost it is time to take my life back and enjoy the future how ever shot the relief may be.
I am also up to riding 20 minutes a day on my bike as of this morning yay me I feel so much more active now. there is a bit of a negative here Bladder is still hurting me but I am trying so hard not to focus my energy on negative right now I can do this and I will get through the bladder issues
My next orthopedic appointmetn is april 24th and I have a kidney specialist appointment the 25th nothing to be alarmed about just a yearly follow up because of when i had protien in my urine which i still get from time to time

yes to sheilas comment

they are recomending one of those lol can not say it or spell it but at least now i can write the spelling of it down for mom haha she wa like oh what is that my response I have no idea lol but yes that is what the person from my orthopedic told me he was does malayna still see an orthopedic or does the other one do everything for her I am really hoping that my insurance covers it as it is natural medicine they might not so we shall see i may just wind up going through hell of a ride again with the painful casting bracing and who knows what else

no neurologist for me

I went to the orthopedic back in february and he refered me to a nurologist well called today because I had not heard anything from them well turns out they will not see me aparently there is some other type of person out there who is more epuiped to deal with theproblems of cp i have never heard of this type of physician before hum i have heard of many kidnd of leary on this one good thing i know I have an orthopedic sho is looking out for my best interest. the one response I had was ok however cp is neurological in nature the guys response well yes you are right but it is just as much a physical issue as it is nurological ya that is true just curious to find out or not so curious really to find out what im in for I do not like new experiences medically any how lol so that is the nurology update hopefully we will hear something bu the end of the week was the last words of my conversation with a very kind person at my orthopedic doc some how he always manages to get my calls lol

update mostly good news

i am finally able to use my recumbant bike as my followers know I have had it since christmas and have pretty much beeen unable to use it due to my adhesion pulling with movement. but that is finally gone yay have been using it for three days straight fifteen minutes at a time for me thats alot right now but it feels so good to be doing something that I know is going to help me in the long run. working towards getting my room situated to start doing my PT as well. I want to prevent another surgery at all costs if that is possible. i am not sure that it is because my ankle is really tight but I am going to work my butt off to try and loosen it as much as i can on my own wish me luck i dont want anymore body parts taken apart removed or cut into I am so all set with that one lol but also if that is what needs to be done to keep me movile than I will do it but my hope is that I can aboid it for a while
Oh and on the negative note yes i saved it for last cause I just want to be able to forget about it but I cant my bladder is not nice at all it is so sore right now. Sometimes i kind of wonder why on earth I was given all this stuff to deal with yet i am trying so hard to stay positive just trying to get through each thing as it is handed to me its a long tough battle but im hanging tight hope all my lil cp buddies are good out there hi malayna emma and brendan

Uro appointment confirmed finally

Yes I finally got my urology appointmetn with the new provider it did not take long but it feels like it took forever. i am so ready for this appointment yet so dreading it because of fear of horible treatment yet again. I am working so hard latley to remain positive about things especially since i have had great decrease in pain after my surgery but its tough because also since surgery I have had nearly constant uti symptoms with no infection yet again ugh. So I go to the urologist on April 30th hoping with all hope that it goes better than my first urology experiences prayers please for good care and no nasty comments about me needing a better attitude and better yet prayers that this one will not tell me to hid medications perscribed from my kidney doctor just need a good urologist in my corner even if they do not want to give my condition a name that is fine just please help me control my symptoms that is all I ask i want to be a normal well wait what is normal 26 year old I amy not be normal but I deserve to feel like I can live my life with the limitations that I do have chronic pain is so exhausting its beyond explainable still waiting on nurology for the appointmetn for muscle relaxer evaluation hoping it comes soon as my ankle and foot are hurting nearly daily now do i expect to never feel pain no but i want to be bale to continue to walk that isnt too much to ask is it hugs to all my dedicated readers need some positive prayers and encouragement thanks so much

oh my lord forgot march was also cp awarness month

i am so sorry to those of my followers who are cerebral palsy affected as I am as well Endo has taken a huge part of my life right now and i completely spaced that march is also cp awarness month forgot to put my pic up with my ribbon so sorry i will remember nex year cp needs awarness too hugs to you all and lots of love

My endometriosis 31 day chalange

Day 1. For me, living with Endometriosis is:
For me living with endometriosis is many things Im not even sure where to begin it painful to live with its difficult to live with It is a very emotionally chalanging condition and id general it is one of the biggest chalanges I deal with every single day.

Day 2. I was diagnosed with Endometriosis in the year:
I was diagnosed with Enodmetriosis in 2009 on December the fourth which I remember to this day was a Friday

Day 3. But I had symptoms since:
I have had the symptoms of Endometriosis since I was thirteen or since about 1996

Day 4. The biggest adjustment I’ve had to make is:
learning to listen to my body and not pushing myself through the pain learning to accept the restrictions endo pain has put on my life and realizing that I can’t do everything I want to do anymore.

Most people assume:
I cant be in that much pain its just a painful period this isn’t true they also assume that I ammaking it up as well.

Day 6. These are the treatments I have tried so far:
Birth control pills
Surgery first for diagnosis in 2009 second in 2012 removal of tuve and ovary on left side along with burning endometriosis one patch and lisis of adhesions which means losening and removing adhesions scar tissue
2 rounds of lupron a medication that puts u into medical menopause
Provara oral to help regulate cycles
Uncaring vaginal birth control ring
Maraina coil inserted with most recent surgery

Day 7. The hardest part about mornings are:
Waking up feeling as though I have not slept because of pain
Knowing that most mornings I will wake in some pain

Day 8. My favorite medical TV show is: Anything on discovery fit and health

Day 9. A gadget I couldn’t live without is:
My rice hot pack
Electric heating pad
Body pillow
Pjs
Soft blanket to put over my belly when I use my rice pack

Day 10. The hardest part about nights is: falling asleep and being alone in my room in pain

Day 11. Each day I take
For endo at least 2 ibuprophen a day
Calcium supplement to help bone strength
Prescription strength Tylenol as needed
Stronger pain meds at times have not been on them in a few weeks since surgery as the pain is bearable right now

Day 12. Regarding alternative treatments
Have not tried any



Day 13. If I had to choose between invisible illness or visible
I don’t need to chose I have both

Day 14. Regarding working and career:
Ha don’t have one due to multiple medcal conditions it sucks

Day 15. People would be surprised to know:
Not a day goes by that I don’t dislike my body for all the pain I am in

Day 16. The hardest thing to accept about my new reality has been:
Havin to accept my new pain and realizing it is a permanent change

Day 17. Something I never thought I could do with my illness that I did was:
Get through the major pain that it causes

Day 18. I feel that Endometriosis Awareness is:
Very important because so many people are uneducated some doctors have no idea what to do for an endometriosis patient

Day 19. Something I really miss doing since I was diagnosed is:
Being able to go for long walkis as physical activity in general increases my pain level

Day 20. It was really hard to have to give up:
At times my entire life and being able to do everything with my family

Day 21. A new hobby I have taken up since my diagnosis is:
Reading and researching endo and its treatments

Day 22. If I could have one day of feeling normal again I would:
Do all the things I used to be able to do

Day 23. Endometriosis has taught me:
I am stronger than I ever thought and that no matter what god gives me I can overcome it

Day 24. Want to know a secret?
Most people don’t know that some days even though I put a smile on I am not ok

Day 25. But I love it when people
Try to understand what I need and what is going on inside my body

Day 26. My favorite motto, scripture, quote that gets me through tough times is:
Never Give up
Live each day to the fullest
Enjoy ever opportunity and chance to feel joy no matter how small it seems

Day 27. When someone is diagnosed I’d like to tell them:
I am here to talk if they need support I can offer them an understanding ear and it is from someone who has endometriosis. And also it is ok to cry don’t elt people make you feel weak because u feel the need to cry you are strong

Day 28. Something that has surprised me about living with an illness is
How much endo can make you feel ill and it isn’t just during your cycle it is daily some times and how incredibly tired chronic pain can make somone

Day 29. The nicest thing someone did for me when I wasn’t feeling well was:
To give me a hug and tell me that I was strong and I had a doctor tell me that even though I was feeling weak and bad that I was a model patient because I didn’t get angry at her for what she could not control

Day 30. I’m involved with Endometriosis awareness month because:
I have endometriosis and we need awareness so many people have no idea that this condition affects millions of woman world wide. It is one of the top conditions that causes infertility.

Day 31. The fact that you read this list makes me feel:
Happy to know that someone out there is willing to take the time to learn about my striggles and it gives me hope that awareness is being spread even through unaffected people thanks for reading and learning about my long journey.

Oh and an added note to people the most hated thing any one can say to me when im living with endo is but you don’t look sick just because I don’t look sick doesn’t mean I don’t feel awful inside don’t assume by looks that a person is fine we know how to put on the happy face and pretend very well when we are not happy and pretending then it is one of the worse days