Two weeks?

I know...I know....two weeks and no updates! It certainly wasn't because there was a lack of any incidences in my life, on the contrary, my life has been a non-stop mess after another over the last few weeks. I swear so much has happened that I just can't take anymore on my plate right now, give me a month to recuperate and I will be ready to tackle more problems. I promise.

So...what has happened? For one, as you know, the water heater blew up and needed to be replaced at a hefty price. I did wind up taking my van to another mechanic who dealt with vans like mine. Luckily, it wasn't too major, but still left my wallet a bit more lighter in the end. My van apparently had a faulty grounding wire leading to the battery which drained it despite being charged. That was promptly fixed...another thing that was wrong with the beast was that the idling motor was really out of whack, so much so that whenever it was started, it sounded like the engine was going to explode (I think Satan lived in there). I am not kidding...I thought the thing was possessed or something, I was afraid to go near it! The gas pedal also stuck and was easily fixed, the very last problem that we encountered was that my seat would not move forward. It has the ability to rotate to allow me to climb into it and then position myself so that I can drive...so when that broke, I was stuck in one position. The wonderful mechanic found a frayed wire that was responsible for it's malfunction and now we are back into business. My mom's van was a simple fix...the gasket around the water pump had to be replaced and that's it.

These unexpected expenses threw my budget off for probably a few months, I have decided to make extra income by making candies. I used to do this when I was a nurse, I made enough to buy Christmas presents for my family and then some. It was easy to do and everybody loved eating them, so that is what I will do. I think I will make chocolate covered caramel apples and truffles to start. Brittles are also in the back of my mind, those were incredibly easy to make, the best part was that I made just about every type from tropical with coconut and macadamia nuts to the simple peanut standby. My family is supportive of this, of course my children have volunteered to be quality control :) I should be starting soon, in time for Halloween...I know the apples will be popular. I may even make chocolate jack o lantern pops....I just hope that my health holds up. My lungs are being very touchy right now, probably in part due to the change of seasons here in NY. So I am doing what every good cystic does, I am stepping up my treatments in hopes to clear that gunk out of my lungs. I will give it a little more time, all with my fingers crossed.

I have also had many doctors appointments, nothing too major. I saw my urologist who repeated my kidney and abdominal xrays to see if my stones are sitting pretty and they are. I have one in my left kidney and one in my right. Not quite big enough to blast them, but we are going to monitor them for any growth...if that happens then I will opt to have the lithrotripsy rather than to try and pass them. Once was bad enough, the pain literally brought me to my knees. When doctors say that childbirth is less painful than passing a kidney stone, I am inclined to believe them after the experience that I had. It was awful...it took a total of 4 days for that sucker to pass. When I brought it to the urologist so that they could send it off for analysis, they commented that they had never seen one that large brought into the office. Apparently, my stone is mostly calcium oxalate, the most common type. I have to avoid foods high in oxalates, such as chocolates (WAaahhh!!!) but have no other restrictions as I can't restrict calcium due to my bones. The doc did prescribe HCTZ (hydrochlorothiazide), a mild diuretic that is supposed to draw more calcium back into my blood stream instead of into my urine. Oh great...another med added to my 20+ or so regime. If it works, then great...I already don't like that I am going to the bathroom almost nonstop in the morning after taking that pill. I have learned to not go on any long drives in the morning :)

I see my ENT tomorrow for my monthly trach change. In all honesty, my trach is really bothering and has been irritated. I have quite a bit of granulation tissue near the top of my stoma, I can see it when I pull back the skin. It has been bleeding a bit here and there...I am going to ask him if he can take care of that. He may have to bring me to the OR to do this, at this point I will do anything for relief. So...we will see. Wish me luck.

The final round of doctors appointments that I have are with the neurologists in MGH as well as withthe rheumatologist, which is a new visit for me. They are going to see if they can tweak my treatment for the Ehlers a bit better as well as further assess me for any additional collagen vascular problems. My RA screen came back at just positive the last time, I have sore joints and some very stiff...I had labs drawn a month ago to recheck some of those values. I will know more when I see them. My neuro has an EMG in store for me, I seriously am not looking forward to this! (I think I said this in another entry, it just goes to show you how much I dislike these!) But, I know how important it is to them and to me to find out just how much my muscles have deteriorated in the last few years. One thing that they have found in my lab work is that my parathyroid hormone is high, usually when this happens, vitamin D levels are really low...so now I have to get my vitamin levels checked to see where they are and if I need to take more than I already am.

All of this sounds busy and it is, but what really was the clincher involves my son. Apparently, he and his cousin decided to send prank emails to their teachers. Unfortunately, they were inappropriate, when I say that, I mean pretty disgusting. I found this out after a nice police officer called my house and asked that we come to the barracks as there was a complaint filed. He would not say anymore, only that I had to come as he is a minor at age 14. To make a long story short, he wrote a email to his teacher while he stayed overnight at his cousin's house. His cousin sent a few as well....they thought that they wouldn't get caught. Well, they did....it was not hard to catch them as their names were ON the email that they sent. Fools!!

They did not get any charges as far as the police goes, but the school was not pleased with them. So much so that they are both on long term suspension with tutors until November. I was so angry that I was shaking when the decision was handed down. Yes I am for punishment, they did something that was irreprehensible, but I am not a fan of OSS. It accomplishes nothing in my mind...What does it teach exactly? How does depriving a kid from school modify their behavior? It doesn't...in fact, in every study that I have read regarding OSS and its long term effects on children there has been nothing favorable stated. In fact, studies have shown that this mode of discipline is more harmful to children on many levels. There are better ways to help kids, some schools are even changing their disciplinary policies aiming towards prevention and involving counselors when trouble is first spotted. I have actually emailed the principal with these studies. Personally, I think that our shcool system sucks....don't even get me started when it comes to offering advanced classes or cutting music or art because they think that they aren't essential. I went to the same school, it was a different animal then than it is now. We actually had more that was offered to us then. We had various extracurricular clubs...my daughter says they have been axed. Anything that the students want to get involved with now, they have to do on their own time and usually with their own cash. Unbelievable.

Anyhow...my son is going to be home with me for quite some time, I have assured the principal that I will be on them if the teachers don't send his work home. Apparently, the tutor has been having a hard time tracking them down. If he falls behind because of their lack of cooperation, fur is going to fly!

Well my friends...that's enough for now.....Until later, hugs and peace :) Jenn