So as I read through some of my last few posts.. I realize a few things… I’m  horrible blogger for one. There are also a lot of things that I never mentioned the outcome of. Most likely, because there isn’t one, but I’m usually on to the next issue by then.

Let’s see what we can clear up.

Nothing.. :/

The blood guy who was SOOOO sure he knew what was going on came up empty. Have a second go round of blood labs in May.

The vascular surgeon, who I meet with again this week, Found an Arterial Clot. For anyone keeping track that is 4 venous clots and 1 arterial clot in ONE LIMB. But I’m fine… or so they tell me.. and regardless of the fact that I have been sent to multiple specialists. It is apparently “normal” even through they had said it wasn’t, even with the clotting disorder that I have. But back to the vascular surgeon… I was sent there due to narrowing of the vein in my arm. Narrowing to the point of being almost non-existent. But, further testing showed that the blood was flowing through it fine so surgery would not be necessary. But I did have another test done on my right arm. Test result for that to be reviewed this week.

The Endocrinologist.. Was a moron. I have NO faith in his 12 year old fresh out of diapers theory at all. He can take his clip board and shove his hand drawn pictures of how the thyroid works… Rant Rant Rant (censor, censor,censor) Anyway.. I had already increased my Vitamin D levels from 1000 to 12,000 with no change in my vitamin d levels.. and that was daily over three years.. He changed me to 50,000 twice a week possibly risking calcium kidney stones due to the all at once pill.. but he’s the expert, right??? (eye roll) Blood lab retest in May. Any one want to place wagers on the change in my Vitamin D levels?

The blood clots that are living in my hand.. are there and still blatantly visible. Bordering on painful at times. I do not feel that the anit-thrombin addition is doing much of anything. The only difference I have noticed is in my blood pressure. Bleeding has not been an issue except on the day I also consumed a pineapple based smoothie. If you don’t know, Pineapple contains a natural blood thinner. Then it took me almost an hour to get a scratch to stop bleeding. However, I did let my Neuro know about the doubled up blood thinners prior to the botox therapy for my migraines. Which if you don’t know requires several injections. I usually leave with several band-aids. That was before doubling up on the blood thinners. But, it was almost like they had the reverse effect. I didn’t have a single band-aid. I barely bled. But then, I have never claimed to be “normal” and am really growing to dislike that word.

House updates.. where are we.. There are a lot of little projects that need cleaning up. Because we painted the back of the house, We took all the nails and staples.. people please don’t staple those blue plastic tarps to your houses.. I could tell that had been done at some point.. ICK!!! Tacky, tacky tacky.. So pulled all the nails and staples, and filled all the holes, cleaned out the gutters, and need to fix those. I’d like to paint (trim and gutters) before I put the shade sails back up. Well, the one we had, and the new one, and maybe the one I am trying to steal from my MIL. I also need to decide if I am taking the tree with the insect damage down before or after the shade sails go up. That will mean I have to put in posts, etc… So, again if you see my Fairy Tool Mother.. I need a Pneumatic Nailer and pump, A Chainsaw, A wet saw, post hole digger and a tool organizer.. and if you’re feeling generous My grill is on it’s last legs.

The right equipment for the job is a must. Having the paint sprayer was the only way to go for painting the house. But we will hand paint the trim and gutters.. once we decide on the color. I did put some planters out front. One of the things I wanted to do as the front planter bed was empty. Have several gardening projects set to go to.. succulent orb. I’d like to take wood scraps and build a planter to hide the a/c unit. I should do that before I call for a big garbage pick-up.

Tool investment, or Granting (Fairy Tool Mother)is a must, Like investing in the hand sander.. I knew I was going to use it.. I just didn’t know how much.. I planned on eventually refinishing a dresser that I have in the bedroom (not done yet), but the Kitchen and main bath got in the way.. Have you seen those? I did the Java stain on our track home oak cabinets.. so nice.. ( is the Devil.. but so handy)
But like I said, each project leads to another.. SO the house is a giant work in progress.

Let’s check on my CVS’r.. since his February inpatient treatment, he has had a few bad days, Mainly the couple weeks following the DHE treatment as it takes a while to come to Full effectiveness. But he gets a little better each day. As energy seems to be an issue, we are trying to rebuild the muscle that, we feel, was affected by the lack of nutrition during his extended episodes. As we are just getting to the full effectiveness of the infusion, we are trying to do those changes to his muscle mass now. Hoping to have a long term effect on the energy production and metabolism. Working on our own theory on it I guess. Or way around it. His body was growing during those really long episodes, and had no nutrition. That had to take a toll. I also think that it still affects the overall workings of the muscles. But, Cyclic vomiting is a metabolic disorder at the mitochondrial level. We could be fighting nothing.. But it’s worth the effort. It definitely can’t hurt. Building up stamina.. Maybe when we try to go to Disneyland again, we can spend more than our typical two to three hours there before he has to rest for eight just to recuperate. But right now, we are at about a migraine a week that he goes to bed for even with the infusion. Doesn’t that seem weird to be okay with? Most people wouldn’t. But I guess our main objective was to control the vomiting of the CVS. Which we are. The doctor we see doesn’t like that we don’t want to keep changing the meds.. But we really are happy where we are at.. The infusion is what works for him. I don’t think that is hard to understand. Or accept. He doesn’t like the pills because it makes him FEEL sick. No one would know looking at him that he has a very rare, very hard to diagnose, very hard to CONTROL condition… Condition.. I like that that so much better than disease. Disease is SUCH an ugly word. He’s a teenager and want to be “normal”. Ugh there is that word again. After having been through SOOO much in his young life, and still going through stuff and seeing stuff that most people will NEVER be exposed to, Is it too much to want to appear to be “normal’??

Did I clear anything up? Besides that I don’t like to be, to say, or to reference being normal? Everything is on going. House projects lead to other projects and are never ending. I guess the only thing I made clear was that I WANT more power tools 🙂 I do enjoy them. But they really do make the projects go faster!

Good luck on what ever your adventure maybe today!

This entry was posted in chronic illness, Cyclic Vomiting Syndrome, invisible illness and tagged , , , , , , , , , . Bookmark the permalink.

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