Monthly Archives: July 2011

A Shattered Mess

OK, so hubby is camping with the boy scouts this weekend. That leaves me single parenting for 3 days. Normally not a huge deal, being I have been doing a bit better health wise (I was not in danger of being admitted to hospital this week). Till late this morning it was going smoothly. Until my 16yr old, old brought her plate she used for lunch into the kitchen. She went to set it on the counter and dropped it.

This really is not a big deal & should not have been very noteworthy however, it did. See the dinner plate (a Corelle shatter resistant plate) did not just break it SHATTERED into a bazillion pieces all over my floor.

I was on the far side of the kitchen when this happened and had to wait for my daughter to bring me shoes. I also had to try to keep PA from coming into the kitchen. Simply telling her to stay out or that it would hurt her feet if she came into the kitchen was not enough. She does not understand. We had an incident recently where we went through a similar situation (yes she dropped another plate) where I had to keep physically keep PA out of the kitchen until it was cleaned up. She is so curious and has to watch everything and with some things no fear and that scares me. We talked to her at length about glass on the ground & she even had gotten a piece of glass in her foot last time. We talked about how dangerous it was to walk on glass with bare feet. Was as if she had NO CLUE what I was trying to tell her and she did not understand. She did not remember and was upset she could not go into the kitchen.

I had to have my 16yr old take care of PA and watch her to be sure she did not go into where I was working, while I tackled the cleanup. As I looked around to assess what needed to be done, I soon realized this was not your normal clean up. I saw shards on countertops, in the sink, on the stove and in drawers.

I was amazed at how far & wide the shards flew. There were even shards in the cupcake batter. She was making cupcakes for a swim party later in the afternoon. Lucky for her she had already baked ½ of it so she had 1 dozen to take and we dumped the rest.
I swept twice, vacuumed the counters, stove and edges of the room. Then I took a broom vacuum to the room in every direction I could. I have to say short of scrubbing the whole kitchen I was thorough. It took me the better part of the afternoon to do this.
No permanent damage done & no one got hurt. We just had a little excitement for my otherwise dull life. Yes, I know not such a dull life but I had to say it **laughing**

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I can’t get enough…

Just when I feel like nothing else can go wrong and life seems dark & heavy. I go out and see this… Brings a smile to my face & lifts my spirits.

Doses of Reality

I have for the most part blogged about my 6 year old & now 19 year old daughters and lots of other stuff, but I have not addressed my cancer much. When I started this blog my intent was only to address my daughter’s issues, but then it soon became more. I always have problems with addressing my issues, because I have never considered myself very sick. Call it stubbornness, sticking my head in the sand, ignoring it whatever you want. It’s a hard thing to do.

My husband & I have always given what we can to others. My husband has a gift with computers and can rebuild a computer with almost nothing. He was a computer geek before it was cool. For years, we would gather parts; he would build computers for people who could not afford them. We donated computers to schools. My friends know they can call me anytime day or night with problems and I will do what I can to find help for them.  We have done these things & continue to do things for others because we enjoy doing them.

Up until recently when my cancer started to progress we have done well in taking care of ourselves. We never really had credit (so we do not owe anyone). Never been well off or even middle class either we struggle. Both my husband & I are disabled. We have not had to rely on anyone for help either.

Writing this post is very difficult for me to do.  I never intended to put a donate button on my blog,  All I wanted to do was to give hope to those dealing with special needs kids just by my experience as limited as it has been. I wanted to tell our story with dealing with autism, ADHD, SPD & various other issues.

I only ask if you do decide to donate only to do so if it will not take from your own family or your own needs.. I know with having this type of cancer I  have some major expenses that will require extensive travel my insurance will not cover that. If I do not ask for help, I will not get the treatments plain and simple. This is the only reason I ask & any money donated goes directly to medical expenses & travel to get there.
Thank you….

Just a bad week

So I know everyone has a horrible week every occasionally the kind that makes you appreciate the good times even more.

I know anyone who follows me on twitter knows all about it. I needed to write it down because I want to look back and say, “Wow, we made it through that we can do anything”. It is funny to think but we have had many of these kinds of week. So why document this one you ask? Well because I CAN…

So this all started last week when I went to see a specialist I had seen October 2010. I decided to go back to see him after my oncologist told me he did not think my symptoms were carcinoid related. If you did not know, I have had Carcinoid Cancer/syndrome since 2006 and it is an incurable neuroendocrine cancer. I went to the only specialist who I could go back to see without a referral & could get in fast. He was shocked at the lack of care I had received from the oncologist. Had said I was much worse off than he expected me to be. Therefore, he is taking over my care. I have scans scheduled starting on Sunday. He was however reluctant to let me leave his office. He wanted me to go to the ER.

Well the ER at that point was not an option being we had an appointment with an intake person at Alta Regional Center for PA. We are having her reevaluated for more autism services. I made it to the evaluation ok. I was in some serious pain & just not feeling well but I made it through.

Later I went in to the doctor’s office for a blood pressure recheck. At my appointment, my BP was up and my heart rate was 149 so the nurse went to chat with the doc and he ordered an EKG. Well you can guess what happened after that… Yep I was admitted into the hospital. Ended up I had some kind of infection they could not find (antibiotics given), my potassium was very low, my heart rate was extremely high (147) and I was mildly malnourished. Ok, that was somewhat unexpected, but then again it was not. On top of the antibiotics, they gave me a heart medicine to bring down the heart rate. Now I do not have good luck with heart meds as I have been on them in the past (tried several types).

As a result, it lowed my blood pressure too much and the rest of the week, I have been couched as I have termed it. If I was not in bed, my butt was planted on the couch. Has not been much fun.

So on to the next item. Tuesday my hubby & I were on our way to pick up a prescription & on the way, back the car acted up. We made it back to the house. Turned out there was a high-pressure metal tube in the cooling system was corroded and gave way. This was going to set us back $750.00. Being we live from check to check, I did not have this kind of cash. Therefore, I decided to sell my Rodeo (my car). We usually sell everything we can to pay for unexpected expenses. Therefore, we were able to pay for that & started to relax a bit. Well until my older daughter said, her tooth had been bothering her.

My husband took her to the dentist yesterday & with our luck, she needs a root canal. We found out our dental insurance is good for cleanings & that is it. They said it was going to be $3,800! I about died… We cannot do 3800 dollars & I do not have another car to sell. So here, I am with a daughter in pain needing major dental work that I cannot pay for and they will not take payments either. On top of that, because we have gone our entire marriage with NO credit they will not give us any. I even called some dental schools and they would only give us a 10% discount.

So here I am wondering how I am going to fix my daughters teeth. I am also trying to put together a last minute party for PA (now 4 years old). I was not going to throw her one, but she found one of her gifts last night & informed us of her party plans. It is actually somewhat funny, because she has never been descriptive nor has she really voiced her wants to us (part of the Autism). Therefore, this is kind of a big deal.

I am going to do my best in hopes to make it a special day for her. However, medical issues & money weigh heavy on my mind. I going to have some faith and hope that a miracle happens for us. I know in my heart things somehow work out.

Wish me luck & thank you for reading my little rant….

Wordless Wednesday: From my garden..

Trip to Ikea & New Furniture

 

 

A trip to Ikea is always fun especially when there is furniture that needs to be put together. PA is very aware when there is something new in her world. Any kind of box she thinks is hers to do whatever she pleases. In addition, every piece of new furniture she needs to explore and she has to try to climb inside. This trip we brought home new inexpensive nightstands & hanging lamps for hubby & my bedroom. I was very excited about this because we have been making due with makeshift furniture (and I use that term loosely) for most of our married life.  Any new or used furniture is very exciting for me. Usually means we get to discard or donate a piece of make shift furniture.

Hubby went straight to work putting them together knowing PA would be all over it. He did a great job at letting her help put them together. He would hand her pieces to give back to him. Of course, it took him twice as long this way, but he was having a good time letting her “help”.  After he got them together, I told him we needed to put them in the bedroom right away or she would try to climb in them. I got mine on my side of the bed and realized hubby got side tracked. Figured PA was not messing with the nightstand so I just let it sit.

 

A couple hours later, I came back into the room to hear a crack. The first thing that came to mind of course was that she had broken the nightstand trying to get into it. Well lucky thing she did not break it but she did pop the shelf out. At that point, I told my hubby he needed to get it into the bedroom before she really broke it.  Poor kid just can not help herself. He then went to work getting his into the bedroom. The next day he hung the lamps. I have to say it looks nice. I would post a picture but I want to wait until he finishes the painting our room. Right now, we have all but one wall painted. It would not look so bad if it was just brown, but with the white paint splotches. It just dosn’t look right.. So I took pictures of her helping instead.