Welcoming Summer but not the heat

This holiday weekend has been decent! Saturday morning, I actually took some time for myself and got my hair washed and cut. I must have looked stressed cause I swear the hairdresser gave me some extra massaging time. Ahhh it felt so nice! After my hair cut I ran home to give Vince his pain pills, which I forgot before leaving, and then went back out to have lunch with my friends. As always they asked how the hubby is doing. They kind of already know the answer by now, but it's nice they ask. It shows they care. I gave the same answer I normally give people nowadays: "eh, hanging in there" and I shrug with a half smile. What else can I say? So back to our great weekend, when I got home, we went grocery shopping and Vince felt pretty good! Must be that 90 degree weather we have had. I hate the heat but I am liking it more and more nowadays. Today, we both woke up fairly early and headed to the movies. We are such old people. We don't like crowds and can't afford much in the way of movie tickets so we prefer Saturday or Sunday mornings. Plus, Vince has a few favorite spots to sit in the theatre. Less of a chance to get kicked by the person behind us and more of a chance to get an end seat in the front half of the theatre. I must add at this point that AMC theatres only have coke products, no pepsi. Vince and I both hate diet coke. We are diet pepsi fans, so we have decided that when we go to a movie, he is allowed to treat himself to a nice regular coke and take an extra bolus for it. So we did just that. Turns out he did good because by the time he got done with his movie snacks and soda, he was running 80! During the movie, I asked Vince if he wanted to go shopping afterwards and we decided we would as long as he feels up to it. Guess what?! He did! Shopping at target and walmart two days in a row! It has been great! Pain not the best but definitely not the worst! His CGM was beeping through both stores as he was on the verge of going low, but who can complain about a low after all that junk food! Go Vince for estimating correctly!
One other thing Vince has decided to try is slowly weaning himself down on the one type of medication he has been on; Lyrica. Now before anyone slaps our hands for self dosing, I must say that I am extremely strict 99% of the time in following doctors orders. However, Vince has been prescribed this medication by three doctors over the past 5 years, all prescribing different doses. He is beginning to see which of his many medications are helping and which ones may not be. Since Lyrica has some very strong side effects, such as drowsiness (or zombiness as we call it) and weight gain, he feels he rather not take it if it's not helping. Also, the fact that his current dose is actually more than the manufacture recommended, is also adding to his decision. So together we thought about how he has been weaned on to the medication in the past and we decide to slowly wean him back down. When I say slowly, I mean it. Like over the next few weeks. You may ask why we are not consulting the doctor on this decision. Well, we will, but just a little after the fact. You see, when Vince's doctors see him in so much pain, all they want to do is shove medication at him. Yes, 95% of it is needed, but he is just to the point with all this that he feels he has seen enough doctors and gotten enough opinions that it's time he has a say in the treatment. Heck, we feel like we know more than them sometimes at this point, even though we know at the end of the day we don't. But yes, that is the plan, so we will see how it goes. Needless to say, if there is any change in his pain, then he will simply wean back up to his current dose.
I think that sums up our weekend! One more day of relaxation!

Raised but with Reason

Today Vince and I visited his Endocrinologist and pain management doctors. For some reason, it stressed me. Normally, I don't think visiting with the docs stresses me but it did today. It seems that they all say something different, and quite frankly, aside from stressing me, it kind of pissed me off.

First, let me update you all, since I don't believe I have done so yet. The pituitary MRI came back normal, no tumors. This is great, but we still don't know what is wrong with him. We are waiting to make an appointment with a specialist at the University of Penn. While at the check ups today, we mentioned this new found problem. The Endocrinologist said the problem could be from being diabetic for such a long time. The pain doctor said it is most likely from the pain medication he has been on for an extended period of time. This is what makes me mad. Although both doctors show a caring side to us and seem to genuinely want to help, they just blamed the problem on their on specialty. That's not helping us, so I suppose we will go straight to the correct doctor and see what is truly causing it. One other thing that annoyed me is that when we mentioned to his pain doctor that he had been getting migraines, the doctor suggested a new treatment he is offering for migraines: Botox. Seriously? Come on! We were like yeah we'll think about it. I asked what could be causing them and his answer was, I don't know but Botox can help. As soon as we walked out the door I asked Vince if he was seriously considering it, and thank god he said no way. Whew.

So back to the Endo appointment. It went well. Vince lost 30 pounds. His liver, kidneys, and all other blood work came back good. Then comes the A1C. We knew since he had that out of control sugar last month from the one medicine his family doctor prescribed, that it was going to be higher. So 7.3% should not have been a surprise. And it really wasn't. The doctor said he would like it lower but completely understood the reason it went up a little bit. He adjusted a few basels and said keep up the good work. He was very concerned about the pituitary problem, and asked us to be sure to keep him updated.

Ok so as I am trying to write this to clear my head and relax, this stupid iPad lost pasrt of the post and I don't know what I wrote...ugh. Let's try this again.

Where was I? Oh right. I was saying how we are waiting to buy a house so we can save more money. I am a little happy about this because I could not take much more of the house hunting stress anyway. Instead, we are going to transfer to a two bedroom apartment in the same complex. Since we have lived here for so many years, they arent even going to charge us to transfer. I am excited since it has been completely renovated. We will probably move fourth of July weekend! Gotta get packing!

An Update

Today has been a decent day! First sunny day in a week and Vince's body noticed. We went to my grandparents and had a nice lunch. Then we went grocery shopping and drove past a few homes for sale. As the day went on though, Vince's pain got bad again, and of course the rain started again. But all in all it was a decent day! I wanted to update everyone on the tumor scare. Turns out the MRI came back and showed nothing. No tumor. So good news right? Well yes, but now we have no clue what is causing his hormone problems and headaches. We need to make an appointment with a specialist at the University of Pennsylvania. Hopefully then can figure out what is going on.

We have been keeping busy searching for a house, but its not easy when you have little to no money. Hopefully we find something soon.

Good luck to Reyna and Joe on their walk today! Hope you had a good time. We won't be able to participate this year since we have a wedding that weekend :(

Babbling

I am exhausted. Tired. Stressed. I don't know how to release it. The only thing that helps is to cry it all out. Cry out the stress and frustration. Stress from Vince's diabetes and neuropathy. Stress from buying our first house. Stress from trying to start a family. Stress of finding more medical problems along the way with Vince. Stress of a new job and being so busy at work that it stresses me even more. Stress of the freaking 7 days of straight rain and seeing Vince in bed all day from the pain. Stress of Vince being nauseous and not really knowing why other than maybe one of his meds causing it, maybe. Stress of Vince having headaches with no explanation except maybe his stress is causing them, maybe. How much more can I or even we take? I am tired. Tired of it all and tired of being tired. Tired of being annoyed by people who don't know the real me/us or don't understand me/us. Why does this make me mad? How could they know? They don't live my life. Why do I get mad when people who have young kids make comments to me like 'you have no idea how hard it is, just wait' you want to talk about hard? I know I have never had kids but I have a hard time believing it is harder than what I deal with. I stay up during the night.  I wake up multiple times a night. I stress about another ones well being. I spend more time in doctors offices and hospitals than they probably do. I can't or won't leave Vince alone overnight or for to long without worrying (although for good reason) All this sounds similar to being a parent. I hate that people don't understand but I hate hating it even more. I am tired and worn out. I started a hobby. Crocheting. Sure it helps, but not enough. I started blogging. Sure it also helps, but not enough. What is the only thing that helps? When we get a break. A true break. One day of low grade pain and good numbers bring such a relief, even though it makes the next day ten times as hard when reality decides to shove it's way back into our home and life. I hate reality right now. It's not fair. I am married to the most loving man I could ask for. Why don't we ever get a break? He doesn't deserve this. We don't deserve this. If we are this happy in our marriage now, what would it be like to have a normal life? I can't imagine how much more wonderful our life would be. But no. We have what we have.

Zero Zilch Nada Nothing...ALL THE TIME!

Something has been driving me crazy lately. My memory has left me out in the cold. I cannot remember anything! I write every last thing down. I have lists and a master calendar! Half the time, I will be in the middle of something, and I will think of something I need to write down, and two seconds later I forget all about it. At work, I always have a million things going on at once, as I support 12 people. Thank god for email keeping me organized, because I can’t remember anything there either. I feel so dumb when I pass someone in the hall and they say, “where do we stand on such and such” and of course I have no clue what they are talking about. I have to laugh it off and say, “oh I have it written down at my desk. I don’t remember things unless I am sitting in front of them.”
 
I think this problem of mine has gotten worse over the years. I have so much to think about with Vince’s health that my brain is too tired to do anything else.
 
It’s frustrating, but thanks to my calendar and grocery list on my iPod which is always with me, and my work email box to organize everyone’s requests, I mange to stay organized. Just don’t ask me what I had for breakfast! I may not remember what I had, but I never forget to eat!!