It has been since the beginning of December that I have posted anything new. Since then so much has happened in my life (not all good). Christmas came and went with much of the time all of us sick. Was somewhat uneventful and humble really. We did not have much in the way of extras, but we had enough to make it nice.
I had been doing well with the diet I was given by my GI doctor. However after Thanksgiving I started to have difficulty with food once again. I found myself relying on strong pain medicines daily just to get myself through the holidays. I did tell my GI doctor, and he determined I was suffering from an intestinal infection. I got antibiotics and sort of got over it. I also got a power port put in my chest back in Dec.
I was sick for about a month then I started losing weight very quickly. I think I lost about 15 pounds in less than 2 weeks. After that I started not being able to keep any food down and a few other symptoms (a little to graphic to mention). I ended up in the ER and after spending 14 hours in the ER they said I had a kidney infection, put me on antibiotics and sent me home.
I went back to my doctor 2 days later and he said there was no way I had a kidney infection and I had no business fending for myself out of the hospital. He had me stay put and made a few calls. I ended up back in the hospital (the cardiac unit) that afternoon and was there for 5 days. This was the monitor I was hooked up to so they could monitor my heart.
Turns out I have several tumors in my kidney along with the ones in my pancreas and now an incisional hernia. I now have to fight my insurance once again, because they do not want to do anything for me. They sent me home with some pretty major seriously regulated pain medications (one of which is a patch). They are trying to make me comfortable I guess. Last time it took me 6 months to get them to pay for one visit to Stanford. I wonder how long it will take me to get them to do anything for me this time. I wish I could just pay to go to Stanford myself, but we are having a hard enough time just putting food on the table and paying everyday bills. Thinks have been really hard for a couple years now, but the past few months and for the foreseeable future it is going to be even more so challenging.
I go back to the doctor on Monday to see if they are going to do anything for me.
We did get to go on an outing as a family (minus Shann because she is up at BYU Idaho). We went up to Daffodil Hill. Here is a picture we had taken.
Posted in Carcinoid Syndrome/Cancer:, Living with cancer, My reality, Uncategorized
Tagged Cancer, doctor visits, Good times, Hard times, insurance issues, Kidney tumor, Neuroendocrin Cancer, Pancreatic tumors, power port
Tonight PA decided she was going to cook. I heard her in the kitchen making all sorts of racket. I called after her and asked her what she was doing & she said “I making Cheese Lettuce Delight momma.”
So I went to see what she was up to because there was a lot of noise in the kitchen and this usually is not a good thing. Sure enough she had the lettuce and cheese out. She asked me for a plate, so I got one for her. Then I went to grab my camera, because this is always something to document.
The following is in her words (as far as the explanation under the photos).
“First put lettuce on plate”
“Then cheese on it”
“Have to put in bowl cause it messy”
“Stir it up”
“Now eat it mom. I make for you”
Of course she made it for me, after all it is green and she would never eat anything on purpose that was green. Not only because of the color but because of the texture. I have to give her credit. She did do a really good job. She also did a good job telling me what she was doing. I guess sort of a lesson in being able to explain something in steps. Something that is rather difficult for a child with ASD (autism spectrum disorder ).
Posted in My Pictures, My silly Kid, Special needs/PDD-NOS/SPD:, Things I Love
Tagged autism, autism spectrum disorder, food, Fun Times, good job, Good times, momma, parenting, Silly, silly kid
My husband loves sweets. We all do, but last year he was diagnosed diabetic. I wanted to continue to make the food he & I love. So I started experimenting with the recipes I had making them more diabetic friendly. Here is one of our favorite.
(low sugar & whole wheat)
1 ¾ cup wheat flour
½ tsp. baking powder
1 tsp baking soda
1 tsp salt
1 tsp cinnamon
2 tsp pumpkin pie spice
½ cup sugar
¾ cup splenda
1/3 cup butter
1 cup pumpkin
1 ½ cup zucchini
1/3 cup milk (or soy milk)
1 tsp vanilla
Mix together both the dry mixture & the wet ingredients together.
Add 1 cup raisins
Put in a greased pie plate & bake at 350 degrees for 45 minutes.
I have always been passionate about journaling. It was a big part of my upbringing and important to my parents. I remember as a kid being told every Sunday we had to sit down and write in our journals. My sisters and I were all given our first journals when we were 5 years old. Every Sunday we would all sit down and write something. I remember not being thrilled about this and actually, I dreaded it for a long time. I never knew what to write and I would just sit there. Usually I wrote simple explanations about my day. It was always just once a week, but it was something my parents insisted on us doing.
After a few years I did not dread it as much. Both of my parents kept journals. I remember a row of journals in the bookshelf that were my parents. I also remember the journal was sacred. No one read anyone’s journals with out permission & was never an issue.
I did not realize it but my parents were instilling a very important skill in me. Not only did it chronicle my life. Also taught me about what and how I was thinking. Also taught me how to deal with my feelings and work through problems. I have had countless journals throughout my life. My very first one was a red hardbound journal with my name in gold lettering.
As I got older, I got better about journaling. For years I kept a journal and was very good about writing in it almost daily. I stopped journaling off and on over the years. Now looking back life was less stressful when I was journaling, because I talked things out in my journal. I used it like therapy so to speak.
When I have stopped journaling, it has always been because I am going through a rough time. Or it is because I am not ready to process something that had happened. I kept a journal through my original cancer diagnosis & subsequent surgeries. However after I had my youngest daughter and then told me my cancer was incurable I stopped writing. I think I stopped writing, because I had not totally accepted the fact I was not going to get better.
Almost a year ago I started writing this blog. This has been a journal of sorts for me. I do need to get back to actually writing a journal, because I tend to write more personal things on paper. I think I will make this a goal and work on it.
Posted in My Ramblings:, My reality, Things I Love
Tagged Family, Fun Times, Good times, Hard times, Just me, more rambling, parenting, realizations, Thinking back
A little over two years ago my husband, daughters & I were living in a very small run down apartment in Silicon Valley. It was a very unhealthy place we named it the sick house. It was where we had so many bad things happen. I was diagnosed with a terminal cancer. My husband had his surgeries & my youngest was diagnosed with epilepsy, PDD-NOS, SPD & ADHD. For many years I thought we would never escape it. We had many chances but none panned out. I had all but given up until I got an email from someone whom we had discussed renting from the year before.
He had recently purchased a house & out of the blue he contacted us. He said he had bought it and thought we would be perfect for the house. I was interested and asked him to send me a picture. With in minutes I had a picture. The first thing I noticed was the yellow rose bush.
I know that seems a bit strange being it was the house I was interested in. However as soon as I saw the rose I was hooked. See I grew up very attached to my grandma & gampa. Off and on through out my child hood I spent much time with them. My grandma and I were very close and she loved yellow roses. She watched my older daughter before she was not able to any longer. Before ALS took her life from us.
Back before my husband and I were married, I lived with them. My husband did not like where I was living at the time so he moved me in with them the weekend after we met. I guess a 4x8ft dirt floor shed wasn’t the ideal place for me to live. Yes I lived in a shed, while my biological mom lived in a converted garage that I paid for.
So I was looking at this picture I was sent of this house and I heard a whisper in my ear “This is where you are suppose to be”. I honestly believe my grandma whispered this to me. My proof was the yellow rose. We really had not looked this far inland and I was not crazy about how hot it gets here, but this is where we were supposed to be. I told my husband this & he was a little hesitant but he trusted me. We made the decision after seeing it once. Was a long trip just to see the house 6 hours round trip from where we were living at the time. My husband fell in love with this house too.
Was just a matter of weeks and before we moved. I organized 2 garage sales to get the money we needed to move. My husband sold our second Rodeo. We moved on one of the hottest days that year. I had called ahead & arranged for some people from our new church to help us unload the truck. All in all it worked out pretty well..
Now when we moved PA was non-verbal & hardly walking. She was 2 and just 24lbs. After we moved she really started to thrive. We were able to get her into early intervention & some serious therapy. She started to gain weight and make some real strides. I honestly think the apartment was holding her back. After a few months of therapy she was running.
I still miss where we lived before. Well the area anyway. I loved the bay area & everything about it. After all we spent the first 16 years of our marriage there. I know we had to move and I am grateful for the opportunity we had to move to a nice house. This really has been a good move for our family even with all the hardships we have endured over the years we still have a darn good roof over our head **laughing**
Posted in Carcinoid Syndrome/Cancer:, My Pictures, Special needs/PDD-NOS/SPD:, Things I Love
Tagged Cancer, Carcinoid Syndrome, Communication, Family, Friends, Good times, Hard times, humor, Just me, more rambling, My Roses, Neuroendocrin Cancer, realizations, Things I Love, Thinking back, Weird Things