Sunday, December 28, 2014

update on my gastroparesis

Well it is almost the new year. I have adjusted to the domperidone finally. My gastroparesis is doing better for the moment. I have not had nausea in about a week. This is almost like a new feeling for me after being sick for a year. It was a rough adjustment and I did not think my body would accept the medication for a bit and I had to stop it and restart it a few times but it seems to be a success for now. I am taking it three times a day and no palpitations or chest pain any longer.
I had an awesome christmas. I will be getting a puppy soon and can not wait to meet him. He will be a family puppy. His name is Sam. He is four weeks old right now. I have seen a picture of him but I want to hug him and cuddle him.

Tuesday, December 9, 2014

Gastroparesis fun continues update on teh endo and cp front as well

My CP is just normal for me so there really inst an update here.
My endometriosis is well controlled right now with the lupron injections I am getting every three months. I am going to be having a bone density scan to see if I will have to come off of lupron for a while to allow my bone density to build back up. I am not sure what will happen if I am forced to stop thee med however I will do what is needed to keep myself safest and healthy.

the gastroparesis is still keeping me on my toes and a bit uptight but I am doing my best to get through it. The new medication they have me on has begun to give me some side effects so it was decreased to taking it three times per day rather than four. I am hoping that this is enough to allow me to remain on the med for a while in order to keep my body nourished and healthy. I have not had much nausea and no vomiting since the med has begun to take effect. I pray that I will be able to remain on this med rather than have to attempt a feeding tube. the thought of a feeding tube reallly scares me however so did starting this medicatin because of some of the side effects. I had an awesome birthday. I was able to stay awake and spend the whole day with family. I am able to eat some solid foods now however I still often choose shakes and luquids over solids because of fear of the pain and possible vomiting. I do not know that I will ever return to my normal self and not think before I eat things again. This has been going on for almost a year and I have been through so much pain weight loss nausea and vomiting that eating has become very difficult but I am getting nutrition with the shakes as well.

Tuesday, December 2, 2014

Another new diagnosis

I have been diagnosed with another condition since august. this one is called Gastroparesis Or GP for short. It is a condition where  my stomach does not empty the way it should. It empties too slowly. This causes pain nausea and severe pain at times. This has resulted in many hospital trips this year for me. This condition is by far the hardest one for me to manage and get to a point with that I am feeling good. I have for the moment gone to taking all calories and protien and nutrition through luquids. I have been making shakes for the last three days. I am on a medication called domperidone for this as well. It is not FDA approved in the united states but It is one last option before I face the choice of placement of a feeding tube which may or may not be a permanent thing after it is placed.
I am still struggling with this right now today but I have had three good days with my GP this week and I pray that the streak of luck continues. The doctors seem to believe that a viral infection caused my immune  system to attack and damage my vagus nerve aka the nerve that controls the function of the stomach. I have not been on the new medication long enough to know weather it is going to help or not yet but so far it is not causing any significant side effects for me. The challenge is going to be remembering to take it four times a day. I tried all other methods of treatment for the GP I tried a medication called Raglan for this as well and it was very unsuccessful. I had many of the neurological and other side effects of the raglan. I started to develop the condition called tar-dive dyskenisia. This is a movement disorder that is caused by the medication that can become permanant if the medication is continued long term.
I have lost 60 pounds since around this time last year. There are many out there who are more severe with GP than I am and for my less severe case I am thankful but the pain is so intense sometimes for me it is unbearable. I am supposed to limit my pain medication intake because the medeications to help control my other chronic pain conditions slow the digestive system further which thus increases pain in my stomach.
It has been an incredible long year and I have learned that you find the strength to go on even when you no longer think you have it in you. I truly believe in the saying you never know how strong you are until being strong is all you have left. this has been a very scary year for me I have felt like I was dying at times due to not being able to hold down foods or fluids for sometimes days and up to a week at a time and this yes resulted in hospital trips for rehydration. I have been to the point where I was begging the hospital to just place the feeding tube and let me keep it because the pain was so bad but I felt so sick from not eating or drinking anything or when I did it coming back up.
This has been very confusing for me because I am one to listen to doctors and my body and their message was always no matter how sick you are get nutrition well this GP stuff is very different. I have days where I have been on clear liquids only I have days where I am on a full liquid diet with shakes and all fluids I still have some days where I can eat however it is not the normal amout to maintain nutrition. the body sends and recieves very mixed messages with GP. It feels hungary sometimes but then you put food in and the pain intensifies so its always a conceios choice of weather to eat or just take in nutritionallly balanced fluids like ensure and boost or shakes that I mix with protien and nutritional powder and other fruits and veggies. I will post more on GP in the future I have not been blogging much as no one really seems to be following

Friday, August 8, 2014

My life continues with many good things going on but still many medical issues as well

I am not sure where to even begin this blog but I am going to shoot for the goal and give it my best shot

As stated in the title there are many positive things going on in life right now both medically and just with life in general. Here is my list for the life in general ones

  • I am learning independent living skills with some very nice ladies through the state of Maine and also the IRIS network. this is a group that works with people who are blind a visually impaired to help them achieve goals in life and independent living skills.
  • I am learning to cross the street on my own with the use of hearing for the most part. this is not an easy task but it is a goal I want to achieve so I am going for it.
  • I am thinking about taking some courses through a college that is offered to the blind and visually impaired. Very excited about starting this however I am not sure when I am going to begin. I have to be absolutely sure that I can devote the time to the courses so I think it may be a winter thing

The good things on the medical front

  • My endometriosis is pretty calm for the most part with my treatment plan.
  • I have been able to completely stop one of my medications for muscle spasms
  • I have started receiving case management services as long as my insurance will permit it to begin.

that is the positives for me with my life for the moment however I am not sure that I have blogged about my most recent medical battle. I have been dealing with pretty persistent nausea and stomach pain and vomiting since December and undergoing a pretty significant number of diagnostic testing to determine why. thus far I have had these tests done

  • Multipule lab tests
  • upper endoscopy
  • colonoscopy
  • MR Enterogrophy  A test whee they make you drink barium then scan you intestines to make sure there are no blockages or inflammation. Those scopes unfortunately don't get all the intestines in there checked out. 
  • the most recent test that was done is called a gastric emptying study. with this test they have you eat an egg toast and drink water.  the egg has a tracer in it that allows then to see how fast the intestines empty. they take seven five minute images and they want at least 90 percent of the food gone in the five hour time period. 
It has been a long however productive seven months. I am not sure how many readers I have but I hope that someone will come across this with similar medical issues and know you are not alone. Oh and on the cerebral palsy end of things I have gone from the fore arm crutches to a walker which for me is much easier.

Tuesday, June 10, 2014

update for post gi and endomtriosis

I got a free ticket from gastro for six months. I go back in December for just a routine check in my endometriosis is still hanging out i am going to remain on the medication regiment that I have been on which is the lupron injections as there is no need for surgery right now I also have the IUD for the endometriosis as well which is also going to be continued for as long as possible hoping it stays for the five year mark for me. Other than that there isn't much more to update on.

Monday, June 2, 2014

Its been a while

I have had a lot going on latley and have been pretty down and out with random viral sickness since december. Right now I am dealing with a UTI and upper respiratory stuff hoping this is my last battle for a while outside of the daily battle of the endometriosis. Sorry it has been this long but not too many seem to be reading latley any how so Im gonna keep this shoret. I have a Gastro appointment today for follow up after my severe virus in December. Hoping that I get the all clear after this one.

Saturday, March 1, 2014

Endometriosis awarnes month

Welcome march and Endometriosis awareness month 

Me in pre op for second lap surgery I have a heater blowing air into my gown that's why I look huge. This is the surgery where I had my left tube and ovary taken.

This is the injection that I get once every three months to help control my pain and the growth of the endometriosis. It is called Depot Lupron

A poster I made to raise awareness

another awareness poster

Ne wearing a yellow shirt in recognition of endo. 

I suffer from endometriosis and it has changed my life in many ways. It is a very painful desiese to live with both physically and emotionally. even with treatment I still at times have daily pain from endometriosis and other conditions that go along with it like chronic pelvic pain. It is exhausting to have this condition but those of us who have it fight to get through each day and to accomplish everything that we want in life. There are millions of ladies with endometriosis. Endometriosis is the leading cause of infertility in females yet very few people hear about it until  they are diagnosed.