so much going on so little time in life

I have been really in a downward place lately. I have been getting a lot of dreadful news. lately. I found out that I am not a candidate for any further treatment on my bladder. I can not have botox in the bladder because it will most liklely cause urinary retention resulting in me needing to catheterize myself for several days. I can not get the Inter Stim implanted because of my cerebral palsy the electrode placement would be extremely difficult for the urologist. My medication was increased to fifty milligrams to see if it will help a bit more. I am hoping that it brings some relief for me.

I also had a pain management appointment for an evaluation for trigger point injections which I was not evaluated for. They pain management ream reviewed my chart and decided that i was not a candidate for the injections either. I was never given an evaluation for anything. they doctors told me that there is nothing they can offer me so it is looking as though I am officially going to be a chronic pain patient until more treatments and trials for my conditions become available.

I have been trying to get new sneakers to put my braces in but that is proving difficult as well. My primary doctor has been trying so hard to get me the information I need for a prescription and also feels that i would be better off following up with my orthopedic who did the surgery on my foot since he knows the general round with orthopedic stuff. I spent yesterday getting in touch with him and discovered he is in Brunswick and he is seeing me in January. I have to have a Letter from my primary doctor stating that I need to see him for my health and if i do not see him it will be detrimental to my health. the reasoning for this is because it is over thirty miles to get there each way and maine care does not like to pay for long millage reimbursement trips if they can get away with it. My life has been a total chaotic mess lately.

It has been a very long November

Hi To those who read It has been a very long month already. I am still waiting for My TENS unit. the doctor was supposed to send a written prescription with the paper work that she signed. I found this out after leaving the PT three messages with no return communication I finally called my doctors office and asked if they could call over to the pt center and find out what was going on because I had called with no return information.
I have also been dealing with alot of grief from the pharmacy who is supposed to order my lupron injections for my endometriosis. I was finally able to find out why the insurance claim has not been going through. I however had to call my insurance company myself to do so. they have been billing insurance for a thirty day supply of lupron when the injections I am getting are for three month use. I called the pharmacy and told them they needed to resend the insurance paperwork for a three month supply however they did not do this Wednesday and they had plenty of time because I had spoken to them and gotten all information by noon Wednesday. I called on Thursday morning which is when i found that nothing had been processed or even sent to my insurance for approval so I called the pharmacy and told them that they needed to speed up the process as my appointment is scheduled for Friday at noon. I also told them that it is ridiculous that it took this long to get my medication as i was due for my injection the first of the month. I will not be using the pharmacy service again I will go through the hassle of getting it from my pharmacy and bringing it with me every time it is needed which wont be for at least a year thank goodness.
On the CP home front I have been working on getting new extra depth shoes for my braces because the ones I have are getting really worn out and uncomfortable however I need things to calm down a little bit before i schedule teh appointment for the face to face consult that is required to get the approval through insurance. i am going to have the doctor at new England Rehab that I see do the prescription as he knows exactly what he wants me to have for a shoe. i think that is about all i have to report right now.

no pt today

I was supposed to have pt today but my tens unit did not come in so its a no go until it arrives. I am hoping it is soon since right now this is one of few options left for me according to pain management as you will see in my previous post. I have never been treated so bad as I was with pain management. i am hitting into a major depression right now because of how he treated me. he made me feel like nothing I said mattered and that I was just saying things to try and get attention. He did not believe me. None of his other colleagues are willing to help me either they say that the injections I was supposed to be evaluated for are not an option even though the doctors that were qualified to do injections never saw me they pushed me down the line and left me with Dr full of u know what. thankfully I have a Primary care doctor who will help me and will fight for me. I really need her for the next few weeks or shall I say months as my GYN will be on leave soon. Personally she should already be taking it easy in my book and enjoying her last few days before a lil one enters the world. I am so happy for her I can not wait until February so I can see lil one. We do not know what she is having yet but she deserves it she is a wonderful person and takes the up most and greatest of care of me./ I can never thank her enough for all that she has been through with me.
We had a transportation change over here in Maine which has not gone very smoothly and i have really been struggling with it and we were talking about it and My GYN told me that every time she hears about the problems with it on the news she instantly thinks of me. I do not cry easily but nearly did when she said that. It means so much when A medical provider takes in every aspect of my confused and crazy life. So many just fail to see how transportation issues affect me and hey do not understand they choose to get angry and frustrated. I have been told so many times if I was more than fifteen minutes late not to go to the appointment but my GYN does not turn me away. I do not know where i would be without her and no words are ever going to be enough to thank her.

An update on appointments

I had pain management appointment yesterday It was the most horrid appointment i have ever been to. The doctor that I had was cold. He never did an exam or anything. He basically told me that was no further options for my treatment of pain because I had done pt and all other things he would recommend. I wrote him a letter that I will share here However I am editing out his full name and he will be refereed to as DR H

Dear heather,

I need to keep you up to speed on my pain management appointment he said he was sending a note however I doubt it will have full details of what happened. I know how most doctors notes are vague and they say what the doctors or doctor want you to know. I went to my appointment with hope that there were more options for me. I gave a very in depth description of everything that I have tried and all of my treatments thus far.

Dr. H came in and introduced himself and told me he did not understand why I was sent to the pain Center. I explained to him that I had been advised by my OBGYN that trigger point Injections could be beneficial and he told me that he did not do injections and the doctors that did the injections reviewed my chart and did not feel that they would be beneficial. I politely asked how they could decide this without trying anything. I told him that only I could tell if it were going to help and only if it were tried. He basically told me that there was no way that they were being done. I said ok well what is the next step what are my options? He told me he had nothing to offer me. Dr h than proceeded to tell me that they only treated spinal and joint issues which I know is not true because my OBGYN has told me she has sent patients there to DR O for the injections.

Dr. H said that the injections were not used or may not be approved for use in my situation. I know that this is not the case because I have been told by the urologist that I have pelvic floor dysfunction and trigger point injections are often used for that. I came out and told him directly I did not understand why the doctors who do the injections did not see me to explain why I was not a candidate. He then began basically telling me that my OB needs to treat my pelvic pain and Urology needs to treat my urinary pain. I told him that the only other option that the Ob feels that I have is hysterectomy which I do not want because of osteoporosis and the fact that I am a fall risk because of my cerebral palsy. He then asked me why she would have to take my ovary to fix some of the issue. I told him that the ovary produces the female hormone um oh I know that was his response. Mine was um Endometriosis feeds off of estrogen so in order to maybe stop it the ovary needs to be taken. His response Oh you’re talking about the endometriosis. I then told him that Uro had pretty much exhausted all options as well and he said to me that people are most often referred to him after exhausting all options. My response was is that not how it is supposed to be. He said well we can only treat pain two ways and that is medication and Cognitive behavioral therapy.

I told him I had been taught how to do the CBT for my pain and depression through my counselors. He explained to me that it was not the same. I asked him to tell me about the CBT he uses and he told me they had a course or something there that incorporated exercise with the CBT however he didn’t feel that it was an option because of my Cerebral palsy and he did not feel that I could actively participate because of my limitations and the fact that it is in group setting not one to one.

I am lost right now. I feel like I have no options. I am so confused how three of the providers on my medical team can say that these injections would be beneficial and then I am denied the opportunity to try them. I have been in tears since leaving today and I am writing this because I cannot talk about it without crying. I was so hopeful at the possibility of less pain and i honestly feel like this doctor’s goal was literally to put me to the point of having no hope at all. Dr H was very cold. He never even did any form of exam. He never touched me and I do not see how it can be considered a valid evaluation and exam to see what he can offer if he never even checks anything. He only read through my records and told me that I don’t have cystitis because my bladder biopsies were normal.

i told him that I had been told about botox and he told me that the urologist did the injections into the bladder. I have been told by Jon that they do not instill or inject anything into any muscles or into the bladder through a catheter. That is pretty much all I can remember. He told me that there was no need for me to return for my second follow up that was scheduled for November 13th 2013.

I am very confused. I am losing hope. What more options do I have I feel like this was a huge let down and it was one of the last steps to relief. I don’t know what to even try next or ask to try; DR H told me that I was a self referral. Is this because I asked you about the treatment? i had it recommended to me from My OB and she told me to ask you and have you look into it to see if you felt it would be beneficial since you need to do the referral process.

I also want to say thank you for being an active and caring part of my medical team. I am only writing this because I want it on record of what my point of view was and how I was treated. I feel that I should be able to make choices about my medical care not have doctors tell me I cannot have access to a possible treatment for my pain. I am going to ask you flat out are there other options for better pain relief? I know you are not a huge fan of narcotics and neither am I my desire is to not have to take them but that is not looking too promising and I need to be able to be a more active participant in the life I am supposed to be living. Right now I feel like I am just watching it pass me by. It is so hard for me to be interacting with my nephews and niece and they are pretty much the biggest part of my life.

I also recently had someone who I thought was a good friend and support  for me tell me that I was choosing to lay down and die because I have been telling her that I cannot watch her daughter. I got lectured about how i felt so much better when I was active. I told her that I had been trying to get 20 minutes of exercise a day and she said that I was not doing enough to help myself. I am just tired of not being able to do what I want to do . I know being active is important but when you only sleep for four hours at a time it’s not easy.

Thank you for taking the time to read this and please keep it on record. I feel that this doctor’s visit is thus far the worst treatment I have had. I am not putting Mercy down as a facility. Most people I have met show nothing but kindness and compassion but this is just not right.

Jennifer Berry



I saw my primary care doc AKA Heather today and I gave her this. she does not understand how this is happening. I told her that I was not returning to that facility ever again. At least not the pain center. She also told me that I was not a self referral because she refereed me on my OBGYN recommendation  It was horrible and I don't ever want to relive that again. Heather is contacting my urologist to see what some other options might be. I am praying that it is not another surgery I am currently also being treated for a sinus infection which is the main reason I had the appointment with her 

response To amy on her comment On my pt post

I am really struggling with it however I have two very supportive doctors my GYN and my primary care provider really keep tabs on me and are an awesome support team i also have my mom who knows how afraid I am of having a stroke now that my dad had his last June. He has made great strides since having his but I am deathly afraid of having one with having the cp and all already it would make things a million times harder.
Also thank you for the support you are giving me it means alot and I really need it do stick with this goal. I am struggling as I just increased my time on the bike to 20 minutes. It feels like it takes an hour especially with the back pain I am having which is in turn triggering the pelvic pain. I am awaiting a call from pain management to see if there is a better path they can put me on for managing my pain so I can continue to regain my quality of life. My legs have been bothering me alot since starting but its just another thing to push through.
I have also been keeping a work out journal that I will begin sharing here soon. I need to type it out so it may take a bit but i am going to share because it is another tool that is keeping me going and I want to be able to look back on it in the long term. this blog was originally for my cp journey but it has became a very good venting and motivational tool for me and I am so grateful for the support i get from my readers. I need to track down the e mail with the link to ems blog again I have not been able to find it recently i know I saved it though I hope she is doing well  hoping to post a picture at teh begining of each month also starting in November but we shall see how well that one goes lol

PT is really on teh ball

I called my primary doctor this morning to let them know PT would be calling them and they had already done so. surprised me for sure usually they take their sweet time on these things. Now to wait and see if insurance will approve the unit lets hope so. I really just want my health situation to give me a break for a while but i do not see that one happening in the near future. I am also back to having the severe dry skin on my feet which has broken open and is very painful but I am putting the medication on them to help heal it. I missed biking last night because of my feet but I am going to do it tonight. My primary doctor recommended weight loss to help with the pain so I have to put fourth my best effort and do the exercise in order for her to see how difficult loosing weight is for me .

Not the greatest news from PT

The PT that I have right now does not feel there is much that can be done with my low back pain. I told her about all of the conditions and she was unsure of what to do or try so she went and had a quick meeting with a PT who does pelvic floor work and they agreed that the pain was not related to an injury or mal alignment but due to nerves that have been over active because of the pelvic pain.  I was kind of expecting this but it was still really hard to take in. Endometriosis and my bladder condition and now the pelvic floor dysfunction have taken so much from me. I thought that I would get relief once I got a diagnosis but the endo diagnosis lead to the Ic diagnosis which then lead to the pelvic floor dysfunction diagnosis. I really truly feel like nothing but a list of diagnosis's.

I am becoming so lost in pain and sadness sometimes. I wanted so much in life before my pain started and now all that I ask for most days is to be able to feel well enough to do at least something each day. I do have days that I can not do anything and I cry alot on those days because I know that I have responsibilities that I can not accomplish.  My primary doctor recommended weight loss to see if it would help with my pain level so I have been working so hard at trying to loose weight. I have stuck to it since the end of September I have missed one day completely because I laid down to let my stomach digest my dinner because i had really strong IBS pains after dinner and woke up at 200 the next morning and said oops was not supposed to fall asleep. I also cut one night short due to spasms in my back and belly

 but I am doing the best I can. I have not sen any changes yet but I am hopeful that i will. doing the fifteen mins a day makes me really tired but it is  something that i need to do and I also need to try and increase my times on the bike. I am going to start using the table bike again for my arms to see if I can stick to thirty minutes fifteen on each machine.

more physical therapy for me.

I just got a call from teh physical therapy center to schedule my pt Eval for my back. My doctor put me donw with a diagnosis of low back pain which I have but failed to tell them about all the medical conditions i have that could be contributing facotrs in my pain these being endometriosis pelvic floor dysfunction cerebral palsy and the IC. They wre going to set me up with a male pt until I listed out these conditions and told them I was not really comfortable having a guy and discussing these issues. they agreed and put me with a femal thankfully.
I am in a few suport groups for my endometriosis and I posted about being uncomfortable talking to a male about my issues and somone wrote a message back to me about how she is so tired of people being embarrassed about talking about endometriosis and todl me I should be telling everyone I meet basically about it. I was less than impressed and left a reply to thart message saying that I was refused treatment by a male pt due to these conditions and also rificuled by a pt in school telling me that my period was a normal part of life and that i was just tooo lazy to want to do my physical therapy. I said that I apologize for not wanting to be ridiculed or risk reliving anything like that. its awesome how soone who does not know the situation passes judgement. i do not pass judgement and only suport others with their choices even if I do not agree i may caution them with an experience that I had if I have tried the teatment however I remain positibe when doing so. sorry for writting about this here but maybe just maybe somone will get it I am lost and just needing to vent I go to these groups for suport thinking that they will understand and now just wind up feeling judged.

changes changes changes

So many changes happening lately. I am working reallt hard on doing cardio every day. I am six days in tonight. It is totally kicking my butt however I know if I do not try to loose weight I will continue to have low back pain and other issues so heres to hoping it works out. I had more padding added to my braces the other day to keep my skin from breaking down. The changes to teh padding in my braces seems to be making my toes on my right foot go numb. I am not sure what is pushing on my to cause this but I have not been able to wear my brace on my rigt foot much at all today due to this. I am also awaiting a call from a pain doctor to see about getting trigger point injections in my pelvic floor to see if it helps my pelvic pain . I will keep you all up to date

change in medication yet again frustrating

I am really uncomfortable since yesterday with my bladder so i called urology to see if the urodynamics testing was a possible next step however they are not sportive of it even though they gave me the information about it and I feel it would have been a better choice they are pushing a new medication on me so this is the route i will take seeing as it is the only one being offered. I just wish he would have just outright said I will not do uro dynamics until you try this medication rather than giving me something that I feel would be more beneficial and making me feel as though I am not able to make my own choices in medical care just frustrated and uncomfortable and waiting for a prior authorization for the med yes it is that new and the rule is Two other OAB over active bladder drugs must be tried well I have done this with ditropan and vesicare neither are effective.

Had a very bust week this week

I had three appointments this week. On Tuesday i went to New England Rehab hospital for brace clinic so they could see how things are going with my AFOs. They do not have many concerns just a few with callouses that are forming on my feet and the fact that my feet are extremely dry. They told me that I need to work hard on keeping my right foot in a neutral and straight position when I am resting with no braces on as they do not want a contracture to form on the right side. If this happens it would mean another surgical procedure. I go back in sic months for another check and hopefully when that happens I can get some new sneakers. I really need them. My sneakers have seen better days for sure.

Thursday i went to see my OBGYN because I had alot on my mind with medical stuff that was not settling well with me so I needed some things explained. the stuff I needed explained was urology related but she is so good to me that she will take the time to explain things in terms that I can understand. She is also going out on maternity leave until  January so I wanted to see her again before she left to have my IUD checked and just kind of a once over kind of thing. I go for my last lupron injection November 7th then i do not go back until February some time provided everything cooperates. Heres to hoping that happens.

And today I had an MRI of my lumbar spine because I have been having alot of low back pain. I always have low back pain with the pelvic pain but this pain is different It is making it so it is hard to stand from a sitting position and hard to turn over in bed along with other difficulties in daily life. Usually if the back pain is related to the pelvic pain if i get the pelvis to calm down the back will but it is nearly non stop.

I will be making an appointment soon with my primary doctor to let her know what has gone on with gyn and let her know that my ob wants me to look into trigger point injections for my pelvic pain and also to get a flu shot they also mentioned a test called uro dynamics that my gyn feels would be beneficial for me to have so it is going to be busy for me for a bit but for now I am taking a break Heres to hoping thing calm down for me soon.

the craziness continues

I am not sure where everyone has gone but I miss having comments to read. I hope that you are all ok and nothing serious is going on I miss Emma and malayna I hope that things are going well/ Any how an update on me. I am currently taking lupron again for my endometriosis and also trying to get  my bladder condition under control/ We are discussing more testing on my bladder along with a procedure that uses acupuncture to possibly help control the pain also there has been talk of surgical intervention the device is called the interstin/ It is basically a pace maker for the bladder so that it stops the nerve impulses from becoming overwhelming, I also have had an appointment for low back pain and I am going for an mri Friday well I think that is about it for now/

end of summer post

I have not had much traffic or comments lately so I haven't been updating as much. I hope that my regular readers will begin to show themselves again I miss al of you. any how this is my end of summer post. I have not been feeling well at all for the past few weeks. I have been having alot of lower back pain and currently also have another urinary infection. I am supposed to see urology on Monday if I get a ride seeings how our transportation to medical appointments for the disabled has just recently changed hands so it is not going so smoothly. I will also be calling my ob to have her do a full once over with things just to make sure the IUD is ok as I am still having pelvic pain and right sided pain It has been nothing but a really rotten time with pain. the spasms in my legs seem to be fairly well controlled with the Zanaflex I am taking so I am very hopeful that comfort will continue. I and my family were blessed I welcomed a new cousin this month he is such a peanut.

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

pelvic pain is so unpredictable

Well I am not sure where to begin with this post. I thought things here were going pretty well despite a few twinges of minor pain. That was until Monday when I fell in the shower. I think I either broke or sprained my toe and apparently put myself into a pelvic flare. I have been in major pain since Tuesday. I thought i had a UTI since the pain came on so fast. Unfortunately urine looks normal unless something comes back on the new cultures he sent out today. He gave me a bladder antispasmodic to help with my symptoms. Ditropan yet again which made me completely stop urinating last time I was given it to take. I told uro this and he said well I will cut the dose in half for you and give you the pediatric dose but I am not sure if it will work.
He said that If the medication does not work and there is no infection on culture I will have to go back to pelvic rehab physical therapy. I honestly feel that I have yet again returned to square one. I am so down and feeling worthless right now because I am so uncomfortable. I am not sure I can endure this all over again. thee have to be better treatments for this it is unfair that all of us who suffer with IC painful bladder syndrome what ever you may chose to call it have to go through this multiple time to have any quality of life.

I just feel like every time I am making any form of progress toward what I want to achieve which is comfort and quality of life things just come crashing down on me. PFD pelvic floor dysfunction another name for this crap yes it has a million names has taken so much from me and made it very hard for me to enjoy the things I used to love. I was just seeming to be getting back to a semi normal life and here we go again. I know that all people try to understand what this is like but you just cant unless you live with it. my doctor told me today that if my pain was that bad I would take what he was offering and go home and try it and rest.so I am guessing this is my option until he decides otherwise. and pelvic pt is again in my near future.

OH and you all may wonder how a fall can induce a pelvic floor episode? Well I am not even sure how that works evidently anything can trigger them I just go day by day and pray that I don't get an episode however my prayers were not answered this past week. exhausted and going potty at least ten times a day while awake and try to sleep at night and ignore the pain but I am hanging in there that's all I can do.

the waiting game is awesome not

Well I am waiting for prior authorization to get my right AFO.. It could take a couple weeks for it to get approved. I am hoping it is sooner because my ankle is starting to hurt. I am also still waiting to hear if I am going to A rumatologist. They still have not heard on one as the first one they referred me to said that they could not see me as there office was not appropriate for me we will see. I am going to ask her to redraw to see if the levels are still elevated. I am not sure if it could be related to endo at all so i will be talking to my gyn about this as well that all for now

update for me still so many changes

I got my casting for right AFO on Friday it went well. Now I am just waiting for the call to say that it is made and ready for official fitting. I am hoping it comes soon because my right ankle is hurting like the left one was but it is not a contracture issue I have been working hard to keep that from happening with the ankle exercises I was given.
I am having a tough time sticking to PT and cardio the last two days with my endometriosis hurting me. I know i need to stick to it however neasua is not fun to try and work through. I will be getting it done later today though after it cools down some as I don't want to miss too many days. I fear loss of mobility every time I don't do what I need to and that is not something I am willing to risk. I am only27 years old and want to continue to live my busy life as long as possible.
My primary doctor also increased my med for nerve pain to 600 mg three times daily so that is making me sleepy. It says that it can make you sleepy and that warning is very true. It is going to be a rough adjustment but as long as i don't miss a dose I am in less pain. I just started the dose change yesterday so I am not sure how it is going to go yet. the med worked at 300 mg three times a day for a week or so hoping for better results with the increase.

I have been working really hard latley

I have been riding my stationary recumbent bike every day and doing pt as well. I never dreamed i would feel the need to stick to things as much as i do now. I keep reminding myself that if I do not keep things going and keep strength I will end in a chair. Don't get me wrong i am not saying anything about those in wheel chairs I have had many friends in chairs I just don't want my life to be spent in one forever. i skipped doing them a few days and felt guilty for not doing them. I was having a horrid endo flare and still just could not stop telling myself that I was doing my body wrong although my flare would have been much more painful had i done them. Living with multiple chronic medical conditions is so confusing and frustrating but I will not let them stop me .

I am wishing that I had a recumbent trike that I could ride outside. i used to be able to ride a bike when i was youngetr but don't have the balance to do that anymore. If anyone has any info on where I would look for used trikes I would appreciate it
oh and pics to come soon sorry  its taken so long just have not had time to take them also I got good news from the kidney specialist on Monday. He told me as long as my labs and urine are good my regular doctor can monitor my kidneys and send me back when or if anything changes.

another appointment update

I had my GYN appointment today  It went well. I go back in three months. She asked if I wanted to wait six months or stay with three and I chose to stay with three for the time being because I am afraid If I go longer things are going to go down hill. this is the usual path that my endometriosis takes. I feel more comfortable staying with three month checks. she was very agreeable to this thankfully she is usually understanding. Her response was lets not mess with a good thing. the IUD still has not stopped my cycles completely however they are less frequent and shorter. I had a week of pain that was really debilitating and the rest of the pain i was able to muster
She said to me today that she wished that I was forty or so because she could take the problem out but she does not want to do this as there is more and more documentation showing that hysterectomy before forty causes increased risk of so many health issues and in her and my opinion I have much less to worry about with the endometriosis. she asked if i was dealing with things OK and I told her ya I'm dealing with things I'm tired of dealing with them but I am hanging in as best I can. I am struggling though with how I am going to get through until I'm forty. this is not saying I do not support what the doctor is doing I am just not sure how I'm going to deal with the pain. I guess I will take it day by day that is all i can do.
chronic medical conditions are so frustrating at times. right now I know i am making the right choice for me but I still feel like I want to cry. I feel like I am just meant to be in pain. My pain is much better managed but I am now knowing that this is going to be a life long issue. I knew that before but I still had hope that I could convince her to do the surgery but the more she talks to me about it and the side effects of the surgery the more I do not want to have it its really tough and confusing

Follow up with my rehab doctor today

I had another  follow up with my rehab doctor today I am now getting an AFO for my right foot and ankle. I go for casting on may 3. the orthotist and pt along with doctor feel that this is best not sure I am ready for it but it has to be done to keep me safe while walking

i am going for another spinal manipulation tomorrow. they seem to be keeping some of the pain down but i still have flares. I had one yesterday with the pelvis. I think its just going to be that i have bad days just wish that it was easier to accept. I get so frustrated when I am in pain and can not do what I need to.

Have a follow up with GYN on friday as well. I feel like I spend more time in doctors offices than I do at home. Hoping for good news at this appointment. I need some good news well I think that is about it for now  this is my crazy life hugs to all of you

heard from the doctor again more news that may or may not be good

I called into the doctors office yesterday because i was in a lot of pain and was unsure if the medications that i had been using were ok with the new med. They are both ok however i did find that my doctor prefers on over the other and also found out that the blood markers for inflammation   are elevated so I now have to see a rhumotologist. I am really overwhelmed and frustrated right now. It seems the more I try to feel better the more issues they find

appointment update from monday

have been rather busy but I know i said i would update on my appointment with my doc on Monday so here it isalong with a pt update. My appointment with the doctor went fairly well I am now on meds for nerve pain. i can not say or spell the name of the med but it is also often used to treat seizures. Hoping it works for me can not really say now since i have only taken one dose I will be sure to let you all know when I am on my regular dosing schedule which is one pill three times daily. She also took blood work to check for inflammatory markers in my blood to make sure I don't have arthritis before we started any treatments. This is the reason I like my doc so much she makes sure that it isn't anything serious before treating.
PT was Tuesday It went well. She told me to stick to what I am doing and gave me stretches to do for my quad muscle hamstrings and abductor muscles as I am having more spasms with physical activity. I have been sticking tot he program fairly well as I do not want my mobility to be lost the crutches are going well sorry still no pics hoping to get some today to put up for you I am charging my i pod now in hopes of sucess in getting them up . I think I am going to walk outside with my nephew when he wakes up if it gets warm out today.

appointment today

I have an appointment with my primary doctor today because i need to see if a different muscle relaxer will work on my pelvic floor spasms but also diminish the pain and spasms I have been having in my legs. I am tired of letting pain take over i want to be active when I want to do things and not have to chose between weather im going to suffer pain. I have let pain rule my life for way too long. now that my pelvic pain seems to be well controled and I will probably regret saying that but I am so  much happier with less pain in that area however I am realizing that he cp is also the root cause of allot of the pain i am feeling.
For a long time I thought that the pain in my legs was fully caused by the irritation of nerves by endometriosis but I am wrong and now know that mucsle spasms and nerve pain are partly to blame. I am so nervous about changing anything with my med combo in fear of messing up the pelvic pain relief that I have been getting. In a way I kingd of feel like i should deal with the pain in order not to trigger another flare of sumptoms yet I know that I need pain managed so that I can atain the goals a have set for myself without being miserable through the process I know that if I lose weight I will be in a better place to manage everything in my lofe and most importantly able to stay ambulatory which is my main goal. I am so afraid that i will be bound to a chair becaue of pain if i do not get things under control and i do not want that. I am not sure if this fear is normal but I know that it scares me to think about all of this. I never dreamed taht CP and other medcal issues combined would leave me in this situation of daily fear.
I took sunday off from doing all things medical and just rested and after doing so I beat myself up all day. I went to bed last night saying god I feel like I am not attaining my goal even though its just one day of rest so I hope that this continues to go smoothly. I am afraid that If I do not rest I will over do it and just be worse off physically yet every time o dont do this I feel like I am utting my independance and mobility at risk. I totally dislike these emotional ups and downs. and for all of you whos lil ones have CP and are mobile now be on the lookout for increaed pain and discomfort. I know I was pushed alot when I was younger and bounced back fairly well but I also feel that too much of a good thing IE pt can be detramental and could make issues later in life however not enough pt and the lil one will not achiece full ability its such a tough road for everyone involved. you as parents are forced to chose weather or not the lil one has pt and we as teh children and adults with cp are forced to realize that pt is important however there is a such thing as too much. I love my pt at New England rehav she is very motivating and makes me feel at ease trying new things that i am very afraid of like going up and down stairs with forearm crutches omg i was not happy with that one but I did it and that is what matters. I will continue to update on my journey and hope to read some new blog posts on my cp friends I miss updates on malayna can u post some pics sheila so i can see how much she has grown if you have not recently .

trying to hold strong to my esercise plan as hard as it is proving

Fifteen minutes of walking every day is proving to be a bit more challenging than I had expected. a few years ago I was able to do thirty minutes of walking on a treadmill without a huge amount of fatigue but wow my body has definitely changed for the worse when it comes to that I have been walking fifteen minutes a day either in the house on rainy days or outside in the driveway on the few nice days we have had. Yesterday I took my nephew out in his stroller and walked around the driveway with him using his stroller as suport rather than my crutches. I am hoping that by June i will be up to at least 20 minutes possibly thirty but we will see how my body does adjusting and how long it takes.
I have also been noticing my right ankle turning in with walking when i get tired so i need to bring that up when I go for my next visit. I have had AFOs on both legs in the past because of this so that might be where I am headed next.i still have not taken pictures and have not forgotten just really busy hugs to all of my loyal readers Emma Amy malayna sheila and anyone else who reads my blog regularly thank you for the continued suport through ecerything

Lots of changes goin gon for me

i have been going through a lot of changes lately  i got my forearm crutches and have been doing a lot of practicing with them. I have had three visits to pt and will have a fourth on Tuesday  At the first visit she did the initial eval and some stretching the second visit I had a different pt and she gave me some home exercises and practiced with my crutches as I got them that afternoon just before going in to pt. the third visit was with my usual pt at new England rehab we did a lot in an hour.

My PT visit last week or what I can remember about it
was taken back and was told to do ten minutes on the bike
this was followed by how much have you practiced with your crutches outside my response was not much  Anna responded with I hope you brought a jacket we are going to make sure you are able to use them in the community So we went outside where she proceeded tot ell me lets take the stairs i was like um whoa stairs not my favorite  i told her that i had fallen down them before and was afraid but I tackled them with the crutches and did the best i could. then we walked around a bit and practiced on a curb which i was able to do a bit easier than the stairs then we walked back in and i went to go into the waiting area to get ready to go and she was like your still not done I have you for another five minutes so i went back with her and took a small break then finished with another five minutes on the bike wow I was beat. she asked me what I was going to do for the weekend I was like after this probably sleep we both laughed then she was like all weekend long i told her no i didn't really plan on sleeping all weekend,.Anna also taught me a little saying on which foot to bring up or down when going on the stairs  she said the good ones go up tp heaven the bad ones go down to u know lol the saying has really helped me to remember up with the good down with the bad.

At my second visit the pt noticed that he light was bothering my eyes and asked if i wore a hat or anything to block some of it out. i told her no that no one had recommended that so I had not tried it. It seems to help a lot so I went out and got a hat. I was using one of dads hats but im not much for  hunting so I wanted a different one.
Botox has been mentioned on two occasions for my hamstrings so i may be doing them I am not sure yet as I need to make an appointment with my primary to get meds changed for my nerve pain in my legs I am assuming the call it nerve pain because it is neurological issues causing miscomunication to nerves and muscles but she did say that the pain in my legs was more than likely due to my cp. I have been working really hard today and plan to continue I walked fifteen minutes outside twice today. I was told to walk with the crutches for practice i will post pictures when i have time to take some .

Life keeps rollin

I had a pt appointment a few days ago. It went ok but they found that I now have a contracture behind my right knee. Is this honestly how ageing with cp goes I guess so for me. They are also trying to get me used to using forearm crutches because i can not walk 350 feet without fatigue and pain to the point I am limping a lot.
I told her that  I take care of my six month old nephew during the week and she was like oh wow you have to be beyond exhausted by the end of a day. Thant is an understatement but I am going to keep going as long as I can. No way am I giving in to cp I may have to make changes to how i get around and how i do things but i will keep doing them and I am determined to walk for as long as I can even if it is with a walker or crutches. she is trying for crutches because of how active I am taking care of the baby. she recommended the full cuff forearm crutches so that they can hang off my arm if I am busy with cooper making a bottle or making his lunch. I will post pics when i get them 

Kind of stressing a little

Just  a bit stressed right now. I went back to new England Rehab hospital today for a follow up with the docs over there and A PT it was determined that I don't have much range of motion in the ankle that they did the surgery on. The physical therapist asked me to move my foot up and down and inward and out she said i had nill to no range in any direction so I have to go to pt for the ankle as well.

I did get a prescription to change my AFO to articulating or hinging at the ankle. they are hoping that adding some of the natural flow of movement back in will help improve the range a little bit along with pt. I go to that appointment on march 8th. I have been having spinal manipulations for back and pelvic pain which seem to be helping a little witht he back pain I can say for sure. I have not been in a ton of pelvic pain recently so i am hoping this is a peek into what may lay ahead for me but i am not counting this as a blessig yet I am enjoying it but it will more than likley be temporary. 

Feeling good for now

I have been feeling pretty well pain wise latley my hip is bothering me still but I am trying to push through that. The meds my GYN put me on for my pelvic spasms are helping . I am in less pain right now with endo than i have been in a long time. I have now taken up the nice activity of trying to loose weight or at least just get some cardio exercise even if i dont loose anything im making my heart a bit more healthy.

I have also been working really hard watching my lil nephew he is five months old my niece and nephews are my world adn the reason I have chosen to use my good days to try to get in shape. I want to be able to be more active with them than i have been in the past with all the health issues. I am also working on building A speech library on his android in hopes that it will make it easier for him to communicate after hsi stroke. I Am curious for those who have non verbal kidos with cp what apps do you use for the I pad or other comunication device for school work thank you for any insight It is apreciated

Frustration setting in really bad

Well my year has not started the way I had hoped it would. This year has again been nothing but doctors appointments,. I was hoping for a better resolution for issues than the trial and error stuff but i guess that is as good as it gets,. I had to go to the doctors again today for a urinary tract infection this one is official lol she siad all markers for infection were present along with blood so the good news is it is not just my pelvic pain this time thank god. I would have cried had she said no infection as my bladder has been doing fairly well with being comfortable.
I was taking flexeril twice a day for spasms of the pelvic floor and I told my primary care doc that it made me way to sleepy so she siad to talk half the dose twice a day to see if it still helped with the pain without making me so sleepy if not she is willing to change it for me.
I am ready for a vacation life is just too crazy for me these days. My legs are bothering me a lot as well with pain in the muscles at the back of my leg and the ones in the front also my hip. i am officially going to new England rehab again for possible brace adjustments the fact that he left me in a solid AFO was good in the very beginning but i am starting to feel that it is restricting my range of motion that is about it for me for today it has been crazy with medical stuff here,.
I am feeling really upset because mom is under so much stress with all of our medical stuff I feel that there has to be a way to deminish her stress but I am not sure how yet 
Dad is getting speech again for a bit to get him using his tablet for speech purposes which will be a good thing any good speech ap ideas for android suggestions are more than welcome miss emma any ideas lol thanks guys for reading I hope u r all well

Im still hangin in

The craziness continues. the new medication she put me on for muscle spasm took a lot to adjust to but i think im finally starting to feel normal again lol. I got a really bad migraine that lasted three days but that seems to finally be gone. I can not see an actual chiropractor because my primary care works with a DO who does spinal manipulation so i am limited to using him because they do not refer outside of the practice. I am OK with this as it is covered fully by my insurance. the other place that we were able to find that took Maine care i would have had to pay out of pocket for the initial visit and the six month follow up as my insurance does not cover those with a chiropractor. the person who i spoke to also said something about me needing to pay a membership fee to be a patient there so I am in a way very glad to have this going in my favor. Really hoping that getting my spine aligned will help with the constant dull ache in my pelvis. I asked for a hysterectomy again and she still feels that it is not in my best interest because I am already starting to have thinning of the bones which is pretty depressing because i know that i will be suffering with this pain well into my forties. Really praying that once my time comes closer she will be willing to take the step and do the surgery. I totally understand where she is coming from however im exhausted from it all. I am hoping with all hope for another two months of feeling just the dull ache which has pretty much became normal for me. I have scheduled my manipulation for the 6th of February I believe it is don't remember totally. I feel so lost in the midst of doctors its not a good feeling for sure this is not where i pictured myself being at 27 but I have to deal with what I am given. Depression has been in my court quite a bit these days which does not make things any easier for sure Im not sure f it is from being cooped in the house because of winter or because of everything going on or from the meds but i am not liking it at all Thank you all of my readers for the support you give it is much appreciated.

another updaate alot going on latley

I had a really tough weekend with pain over the weekend and ended up in the er on the 13th because i could not get my pain controlled here at home. I had another follow up with gyn on Tuesday the 16th and she put me on more medication for the muscle spasms and referred me to a chiropractor she also mentioned something about a pain guy at mercy hospital and injections of some sort not a huge fan of the injections but I will try anything that might help. I will keep you updated on how things are going. I asked for another surgery however she would not give me a hysterectomy because of my already thinning bones so im stuck with this for some time to come.

an update on things

Now that I have finally gotten access to my blog again I will update you all on how I have been doing. I have been having hip pain again and started physical therapy for that yesterday which means its really sore today but I am hoping that it will diminish soon. I am still seeing positive affects with continued pelvic floor therapy which is good. To Emma I didn't get alot for Christmas but that's OK with me I got what i really wanted a new i pod to replace the one that got dropped and broken and some clothes but the best part of my Christmas was that I felt well enough to actually really enjoy the day and all of my family. also Emma yes i still have my brace that goes on my left leg I will have it forever now to keep my foot straight because if it does not stay straight I can not have any further surgery on it so I am making the smart choice to keep the brace on as much as I don't like it. I finally got my yearly upper respiratory infection shortly after Christmas and i am still battling with it now but it is getting better each day. I had to be put on antibiotics because of the fear that it was bacterial since it hung on so long.I meant to post holiday pics but have not done so yet I am hoping to get time really soon but my lil four month old nephew keeps me pretty busy all week i am quickly posting before he wakes up for some breakfast