Sunday, May 29, 2011

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!

Wednesday, May 25, 2011

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!

Saturday, May 21, 2011

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 :(

Wednesday, May 18, 2011


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.

Monday, May 9, 2011

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!!

Saturday, May 7, 2011

A Beautiful Day

I have to share what a wonderful day it has been today. Sunny and 70 degrees outside. Vince and I went out early to do our normal Saturday grocery and drug store run with his hair cut and Mother's day gifts to pick up added to the agenda. Vince felt great and it showed. I didn't even realize this, but I kept hanging on Vince all day. Holding his hand and giving him hugs as we walked around the stores. He brought it to my attention and I said I was just making up for when I can't hold him because of the pain, which is most of the time. He had a big smile on his face all day and even suggested we go out to lunch to a sit down restaurant, which we seldom do anymore because he is to uncomfortable to sit there. Once we came home, he took a nap and woke up in just as great a mood as earlier. I hope the harsh winter is finally over and hope that we can enjoy days like this more often this spring and summer :) 

Another Long Post

Where do I begin? There has been so much going on lately. I suppose I will start with family planning. Vince and I have been trying to start a family for about 3 years now without success. I began to see my doctor for help at some point. I think it was last year but to be honest, I forget now when it was. I have zero memory of anything anymore. Must be the stress. Anyway, I explained that we are trying to have a baby and that my cycle is always off which is probably why we are not having luck. They started me on some meds to try to regulate me but still no success. After noticing some issues with Vince, we began to think our problems were more than what my OBGYN could handle. A few months ago we made an appointment with an infertility specialist. Our first appointment there shocked me. They got right down to business. They did a full work up on us and a full exam on me, ultrasound included. They confirmed what I have been told in the past. I indeed have PCOS (poly cystic ovarian syndrome) They were hopeful and said we can still have a baby with some better monitoring and treatments. We explained a few issues we have noticed on Vince's side and they said there are ways around it. We have options. So, okay, sounds like we are still in the game. Over the next few weeks and month or so, I spent a lot of mornings before work, going to their office for blood work and internal ultrasounds. I should probably mention that going to the "girly" doctor is my least favorite thing in the entire world but after all this, I got over it quickly. So, as they were trying to figure out what my body was doing and regulate me, they also sent me for some routine tests to be sure all my other parts were in working order. I won't go into detail but let's just say they were very painful and almost scared me away from the whole "birthing a child" idea. Anyway,  after a few months of all the monitoring, they were ready to do an IUI (intrauterine insemination) Of course my body felt that the perfect day for this would be the morning of the start of my new job. Yay! Hear my excitement? So we collected Vince's sample and off I went to the doctor to be inseminated bright and early that day. After waiting for them to prepare everything, a nurse came out and called me back. I thought, good, we are still doing good on time. I couldn't be late for my first day of a new job! But instead of taking me to an exam room, we went to an office. Weird, I thought. Then she proceeded to tell me there was a problem with his sample. I won't go into detail for Vince's sake. She said she will have the doctor call us. So I left, teary eyed and called Vince with the news and went to my first day of work and put a smile on my face. A few days later the doctor called and said he thinks Vince needed to see a specialist but he would like to have some blood work drawn first. So we had that done and waited. Then the doctor called me a few days later with the news. He said he found that Vince's hormone levels were very off which explained the issue with the sample and that it is a sign of a pituitary gland tumor. At this point I stopped listening. When he stopped talking, I said, is it cancer? He said no. Not cancer, just a tumor. He will need to take medication for the rest of his life to regulate himself and his hormones should return to normal and we can continue the baby making procedures. He said Vince needs an MRI to confirm. Of course we did what any human would do when the doctor says the word tumor. We went right to Web MD. There it said that MOST of the time these types of tumors were not cancerous. Most of the time? Well that doesn't give us any comfort! The doctor failed to mention that there was even a possibility of cancer. So where are we today? We are waiting for his MRI next week to see how big the tumor is and we will go from there. It actually explains a little bit of why he has been feeling more awful. It explains the headaches and some of the nausea. So now we wait and hope that it isn't anything too awful.

Tuesday, May 3, 2011

We Don't See it Everyday

As Vince and I walked through the grocery the other day, we heard a man say, “you have the same pump as I do” Vince’s pump normally hangs off his pocket of his pants so it is quite visible. The man’s wife was down the isle with their cart and he said it as he was passing us to get to her. It was so out of the blue. I walked toward him and noticed his Minimed Revel Pump on his belt and I asked him how long he had been diabetic. He said 50 years. He looked to be in his 60’s or 70’s (I am very bad at guessing ages). I asked him if he uses the sensor with the pump and he said no. His insurance wouldn’t cover the cost of the sensor. How sad! I hate hearing this! He did agree with us though that the Revel is a great pump and is awesome. I love seeing this, even though I know their life is as difficult as the rest of us, which is sad. I told Vince as we walked away how it makes me feel good to see others with a pump. He agreed. It makes us feel like we are not alone. There are others in our little screwed up world. That is why I love talking to all of the Diabetic Online Community here. You don’t see a person with a pump walking down the grocery isle everyday!

Monday, May 2, 2011

Don't Forget the Low Factor

It was 2:30AM and I woke up looking for Vince. I go out to the living room to find him playing his Playstation 3. He likes to do this to clear his head. He said he will be coming to bed soon, so I go back to sleep. I wake up again at 4:30AM and find that he still isn’t in bed. Worried that he may have gone low, I go looking for him again. I find him asleep in the recliner on the couch. I didn’t want to wake him so I turned off some of the lights and turn off the TV. I checked his sensor and it said his number was 165 with an arrow going down. Since I was half asleep, I forgot to check how quickly it was going down. I just saw the 165 and figured he would be fine and went back to bed. The alarm clock went off at 6:45AM, so I got up for work. I went to the living room and woke him up and told him he should go to bed. As soon as he woke up, he was screaming in horrible pain. He was mad that he slept out on the couch and thinks it was bad for his body and caused his pain to be worse. I told him I didn’t want to wake him and that is why I left him on the couch. He was just screaming at the pain. I was telling him to calm down and to be quiet and he started yelling at me telling me I don’t understand the pain. Saying no one understands how horrible it is and so on.  I was getting annoyed since he was screaming more than usual and was very agitated. I continued to try to get ready for work as he was dealing with waking up and being in pain. His pump beeped at him and he told me he was low on insulin and needed a site change. Annoyed already by all the drama of the morning, I got the supplies and helped him with the site change. As I continued to get ready for work, he tested his blood sugar and announced that he was 49. At this, I mumble under my breath “Well that is why your acting like an idiot”. I didn’t even realize I had said it. He said don’t call me an idiot. I said it wasn’t you, the low sugar was making you act like one. All of the yelling and frustration was from the pain and was heightened because he was low! So we treated his low and he finally returned to his normal sane self. He could tell I was in a bad mood and he said I’m sorry I was yelling and if I said anything mean to you. I said, you just kept yelling about everything. He apologized and gave me a big hug and kiss and of course said what a wonderful wife I am and thanked me for helping him. I hate how low sugar makes him act like someone he is not. It is so frustrating. I wish I had thought to check his sugar earlier. He hasn’t had to many bad lows lately, so I guess I just wasn’t thinking about it. I am just so thankful that Vince and I have such a great understanding of his medical conditions and how it affects him. If he or I get mad, once we calm down, we always apologize and talk it out. We know we aren’t really yelling at each other. It is just the sucky situation.