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 .