crazy few weeks

i got my lupron injection almost a month ago now and have been feeling crummy since. I thought it was the lupron for the first few weeks as it has made me feel crappy. However I have never felt as bad as I did this time. I finally gave in and went to my regular doctor and was diagnosed with a sinus infection which is not very kind. I am battling it with medication lots of fluids and rest. I was feeling so bad that I thought something was reallly wrong it was scary when i went in. I am so happy that it was and is only a sinus infection wow made me dizy extremely tired and just blah never had a sinus infection do that. I don't remember it if I have had one like this. I was afraid to go for my second lupron until I found out i was also sick. I should have known it was not lupron but it was freaky because some of the symptoms started soon after the injection and just never left.

where are my usual readers hope all is well

i really miss those special readers who usually leave me encouraging uplifting comments on here. Amy and emma i hope all is well with you. Also a shout out to malayna annd sheila hope things are going good for you as well things are going ok for me.
On teh note of cp things are on a pretty even plane where things are just kind of hanging out staying the same. I had a med change for muscle relaxant from flexeril to zanaflex because teh flexeril wasnt helping the pain from spasms in my legs anylonger. I am still on gabapentin for nerve pain as well. As for the Endometriosis that is another story in itself. i am back on luporn for that which has been making the past week a miserable one since the initial injection actually causes and increase n pain followed bu slow resolution of pain which hopefully will begin really soon can not take this much longer its pretty constant right now but it isnt much worse than the flare I had before starting so i cant complain too much. I am awaiting hotflashes and the awesome night sweats because then and only then will the pain officially remain gone until the end of treatment. It isnt a very fair trade but id rather sweat and be hot than be in pain. The mood swings wont be any different since i am mooduy because of pain no one will notice more than likley haha. Hoping mom doesnt try to ship me to another planet like she wanted to do with my first  round of lupron. I know what to expect now though as this is my third round with it. I try really hard to control my moods and when I cant and i do get upset I appologize. Thankfully my family knows why they happen. that is about it fr ome these days oh yes i am nearly finished with my second round of pelvic pt i am not so sure this is good but it is what is happening. I rally wish that people would make it possible for those of us with cerebral palsy to get continued pt through our adult years. My PT told me that alot of my pelvic floor issues are acttually related to my cp and tone such a hard thing to keep under control thats for sure but i plan on continuing to do so and also going back to pt when needed. even though insurance is very picky about how much they cover.

update on me again

Hi everyone who reads regularly just wanted to update on how i have been the past few weeks. it has been a long few weeks I was having bladder issues again so I am back in pt for that. I get done with cvisits for that on august fifth. It sems to be helping some but with the CP it is so hard to keep the relief going because when my tone kickes in they are finding that it affects more muscles than anyone thought. Definately more than i thought. I knew that I may have bladder issues later in life and have always had bowel issues but this is just more than i dreamed could happen with cp.

Ok enough on Pt that isnt my favoriate subject these days lol but its a necessary one. I had an OBGYN appointment for follow up and also to check my scar from last surgery because it was red ad swollen. Which was really weird at 16 months post op but she said that it was only a superficial infection and was most likeluy caused by the scar being irritated by my clothing. I have ointment to put on it and have to keep it covered until it is completely healed again.

I also started lupron again after a huge flare of endometriosis. I was talking to my nurse or the nurse who works with my doctor hence the reason i call her my nurse lol, but any how i was talking to her every other day until my appointment she knew what was up and had informed my doctor but my doc is one that has to hear it from her patients mouth, so she waited till the end of the appointment and asked wait have u had any flare ups of endo? I told her that i had a few and every time i get one it is getting more painful. She asked me if i wanted to do treatment which for now is lupron as I am trying to minimize my surgeries or if i wanted to wait it out for another three months. I told her that there was no way i would make it through the next flare as this one was difficult and so painful that i was having trouble holding down food meds and fluids so we startted the lupron. I got a one month injection and they are ordering three month ones so that I can have less pokes. I love my doctor and nurse because they try to make thing seasier for me and are vvery willing to compromize.

welvome July and an update on things

I have been having a really rough go of things the past few months. I fell in the shower in may which in turn started my pain again. I am in pelvic pt again to help with it. I think the PT is helping but now I am in a major endo flare. I go to my obgyn on Tuesday to see what she thinks the next step would be. I know that she has offered pelvic floor trigger point injections but I am not sure how they will work with the CP and neither is my PT. she is skeptical that they will not work well because of my tone. I may be asking for lupron again as my pain got so severe today that i was in tears despite taking pain medication. I have fought really hard this round to keep out of the ER and so far I have done it. I know all they will do is fill me full of pain meds and send me home so I might as well do that on my own . I think I have a cyst on my ovary however I am not totally sure. If the pain continues i will be asking for an ultrasound on Tuesday. 

I have booth AFOs now and I can walk without my forearm crutches however I get really tired  easily so I am choosing to use them most of the time when i am outside to keep the fatigue to a minimum. the meds for my nerve pain are working really well my legs are not so painful anymore. also my meds for muscle relaxation are also working well I felt so good until my fall in may. when i went in for my gyn check in april they were so happy that they had not heard from me that my nurse gave me a high five. I am so thankful for my gyn and her awesome nurse. The nurse is wonderful she called to check in on me a couple of times just to see how thigns were going and remind me to hydrate and eat so i could not end up in the hospital. Both my doctor and her nurse go above and beyond the call of duty,

. I am very blessed to have both of them as a part of my medical team. 

Got my AFO yesterday needs some adjustments

I got my brace yesterday for right foot and leg it needs adjustments though. It pinches in the back behind my knee when i doing certain things and also causes two of my toes to get numb after a  bit of wearing it. I am supposed to go back in today when dads personal care worker gets here/ We shall see if it is strap positioning or what making this happen. I have never gotten numb toes from an AFO lol It doesn't seem tight or anything but I also noticed that my heel does not stay back all the time when I am walking which will eventually cause skin breakdown so I need to get that addressed.
I am also experiencing the burning in my pelvis again like endo pain. Very sad about this but I am going to deal with it until I can no longer stand the pain. I am not ready for lupron or surgery again. I just need a relatively calm year for now with endo I cant deal with all of the issues at once. I had to call my GYN because oddly enough my pelvic pt saw my lap scar and immediately told me I needed to have it looked at by the surgeon because it is extremely red. they are concerned with infection. Waiting to hear back from my doctors nurse as appointments were offered with my doctor however I could not get to any of them. I don't expect to be a VIP patient however I do expect understanding of my situation which this nurse had none. I love my doctor and my nurse but this was not my usual nurse.

I had my second visit for pelvic pt Monday. I have to pay out of pocket as my insurance doesn't seem to see the need for pt again with reasoning that I had it last October. Yes I did finish a round last October and continued with the stuff I was supposed to do but Pt requires a different approach after a certain amount of time in order to continue the relief. they approved one visit for this time which was the eval. they don't do much in that appointment besides muscle checks to see what is needed. I don't think they truly get the pt routine ugh thankfully the place i go for pt is understanding and want their patients to get care even if we are disadvantaged so they have given me a monthly payment plan and a discount.

fathers day why is it so special to me

this post is dedicated to my awesome dad. I never realized quite how special he is until nearly losing him to stroke last June. I knew i was lucky to have  a dad but having a medical crisis come between him and I has made me so much more grateful to have him. He isn't the same dad I had a year ago and probably never will be but he is here.

Each day is a struggle and sometimes i get frustrated trying to help him communicate what he wants or need but each day that is ended that he is with me is a blessing that i thank god for every single day. Watching my daddy go through this hell post stroke has made me realize that despite the fact that I have allot of medical problems I can still talk walk and do most things on my own I never dreamed I would see my dad have to go through something like this. He keeps me going with his strength and determination. Every time I have pain I say it hurts and that I am so uncomfortable however I have never experienced a spasm like he has in my life he is my rock my strength really my dad is my hero.

If i had half of his strength and determination I would be a better person. I am determined and have alot of dads qualities but he is stronger than me because he has pulled through having full function and loosing most of it I am conditioned  to deal with my issues since i was born with them. I really don't feel that this post is even enough to show how strong and determined my dad is. I am literally in tears writing this as it brings back all of the memories of that horrid early morning rescue call. I try not to think about it even though I am faced with the after effects every day. He has come so far in this past year from not talking at all to stringing together a few words. the progress is painfully slow at times but it is there I know now to always be thankful for the little things they mean more to me now than ever before.

about two months ago my daddy said my name for the first time post stroke and i nearly cried I asked mom if she heard him and she said no so i had him say it again.  My dad is so special to me i don't know what more to say besides I love you daddy and I hope that you have a wonderful fathers day. all of the materiel things In the would could be gone and i would still  be happy and thankful cause i have you.

song i like that is about dads

never heard this song but he words strike me as what my dad does nor me

I love this song i thank my dad for all his hard work and even the times he had to disipline me you shaped me to be the wonderful person i am today

round 2 pf pelvic pt this should be intersting lol

well no strange infections came back on the cultures he sent out so I am in the clear for any form of urinary infection however still in pain despite the medication and continued pelvic pt that I have been doing since i went the firts time. Really hoping that they can add some things in to make me feel better again. I want to be able to forget what a bad pelvic spasm feel like

Still waiing on Prioro aoutarization for my brace which hopefully comes soon as i am getting more pain in my ankle. I am hoping that once i get the second brace I can walk outside some without crutches but right now my ankle is to unstable to do that. When i hint uneaven ground it twists with no warning so the crutches are best right now. I have been sticking to the pt and recumbant biking despite how difficult it is some days. I did well tis month with the pain i have been having I only missed a week of biking