Birthday and Various Thoughts….

It’s been a while since I’ve blogged,I believe my last post was back in March. I need to give this blog more attention as I’ve slacked off a bit. Well today I celebrated my birthday, 47 years old if you were wondering, and it was a pretty good day celebrating with my mom, dad, and brother. At this stage I’m not really into the hoopla which some people enjoy, I’ve never have been that type of person. Spending the day with family is just fine with me. I have to confess that I was some what depressed.Living with spina bifida will do that to you. This whole day had me thinking, I’m 47 years old, I’m not married, no girlfriend, and no children, it’s very discouraging. When I was in my twenties I thought I would be married and have children, I guess that wasn’t part of the plan. It has donned on me that since my health has deteriorated, I’ll probably never get married or have a girlfriend for that matter. Being disabled with spina bifida, walking with a cane, and the various other health issues which goes along with it doesn’t really impress the women, if you know what I mean. I guess I’m going to have to deal with being alone, which sucks. Part of me is extremely envious of men my age who have a family and children, I don’t know. Maybe this is part of the plan, maybe I was to never have children, get married… So basically, I had a fun, though somewhat depressing day, with a delicious Italian rum cake for a birthday cake…
Last month was father’s day, and I’m grateful that I get to spend the day with my dad, which was nice, we had a nice little cookout. Though the downside of father’s day is I get pretty down, actually I was pretty down for several days. I cannot help to wonder why there are people who have children that honestly shouldn’t have children. I see it on the new, in the newspaper, and online. The abuse, neglect, or even kill their children, all the while there are people out there who are dying to have children but are unable to, it’s honestly very tragic and heartbreaking. I here when people say well it’s part of “GODS” plan, honestly I don’t believe in a God, and by the way when it comes to plans his plans suck sometimes. I try to look on the bright side of things, however, lately things haven’t been very bright. The search for happiness has been very elusive for me for several years, something has got to give….

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Waking Up In The Morning…. Is Becoming Very Difficult!

Lately I’ve been lying in bed long after I’ve been awake, sometimes I just lay there for over an hour. I’m not sure what’s going on. It seems I’ve been dreading to get my day started. My dreams have been better than the time I spend awake. In my dreams everything is fine; no health issues to worry about, which is my main problem these days.I look back to when I didn’t need a cane to help me walk or a wheelchair for long distance walking. Back then, things were not always great, however, they were better than they are now. I relish the time back when I was working full-time doing something which made be extremely happy. Those days are gone and it’s been a struggle finding something to do that makes me happy and that gives me a sense of self-esteem and self-worth. What’s left of my self-esteem and confidence has been dwindling rapidly, I just can’t seem to get out of this funk that I’m in.
There are a few things that are going for me, and that’s a good thing. My weight loss which has been in a stand still is moving along, it seems that I’ve hit a brick wall and just needed to put in more of a effort. The cardio sessions have been much better now that I’ve been watching Netflix on my iPad while I’m riding the stationary bike. Perhaps, I’m being too hard on myself. Maybe I’m expecting too much.
The main issue with me is I keep thinking of the past, and what I could have done differently when it came to making decisions concerning my health. Unfortunately, there is no time machine where you can just turn back time and have a do over in life, trust me when I say I wish there was.These things have been eating at me for the past few months. It’s not that I want to lay in bed for a long time, it’s I guess I dread the though of what the day might bring. Will there be a medical issue, will the pain and discomfort worsen, will my ability to walk worsen. All of these issues are a constant thought in my mind, and it’s not healthy. It’s not like I don’t have anything to do throughout my day. I could do some photography, I could work on my writing. I’ve been stuck at 47,000 words for the last eight months. It’s not like the story which I’m writing sucks, it’s actually pretty good. I’ve got plenty of things to keep me occupied, but the what ifs keep coming up in my mind.
I can’t change the past or the decisions that I made, or more importantly didn’t make. Perhaps the past will just keep haunting me forever, I’m hoping it won’t. It’s doing me no good to sit in my room and daydream of what could’ve been. I’m just hoping waking up in the morning becomes easier…

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Time To Crush IT!

As I was in the treatment room of my urologist last Friday afternoon for another cystoscopy and catheter change, I decided it’s time to crush it and take off the other 40 or so pounds I have to lose. The first 50 came off pretty good, then I got sick and stuck with a picc line for almost four months. Before the picc line I had started to do some weight lifting with light weight to strengthen my arms and it was going pretty good. With the picc line you cannot lift any weights, it will cause tremendous problems, and I do not need anymore problems than I already have. My goal is to take off the last 40-45 pounds off by the summer time, it can be done, I’ve done it before. It has to be done, the foley cath needs to be gone so I can have some sort of life. Everything I do revolves around do I have access to a bathroom, it gets annoying at times to say the least, and honestly, I’m sick and tired of the every six weeks visit to my urologist. It’s tiring, and I’m done! The cardio work I’ve been doing on the stationary bike has been consistent, 4-5 days a week for a half hour each session, it seems to do the trick. It’s kept the weight at a consistent level.
The second thing I half to start to crush is my writing, my unfinished novel. I’ve been stuck at 47,000 words since Thanksgiving, I’ve seriously have slacked during the holidays. It needs to get it finished, I have too many ideas for other books rolling around inside of my head. Heck, I even named this blog after the title I came up with for my book, “I’m More Than Just Damaged Goods”. That title alone can have so much meaning for different people who have a disability. I think when the book is done, people will like it, heck I like what I’ve written so far. It’s pretty powerful, now that I thinks about it. If people like reading John Green’s “The Fault In Our Stars”, I think they’ll probably like this, maybe more so, but I’m being a bit biased here.
So here’s to getting my shit together and Start Crushing It…. Be safe everyone!

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The Holidays and Picc Line

First off I hope you had a very nice Christmas, Hanukkah,or whatever holiday you choose to celebrate. The month leading up to the actual holiday is pretty busy and chaotic to say the least.As a former chef, my job is to take care of the baking, which I really enjoy. I usually start about two weeks before Christmas, where I bake and freeze the cookies and what not, so they will stay fresh until Christmas Day, I pull the frozen baked goods out of the freezer the day before. These days I have to take my time, due to the fact I can’t stand for long periods of time, which isn’t much of a big deal. This year I did five different cookies at about four dozen each and three types of dessert bars chocolate fudge brownies, blondies, and the Christmas favorite seven layer bar. As usual, I baked way too much, that was okay though, as I gave away some to family and friends.Christmas Day itself was very low-key, with just the four of us. For Christmas lunch we had lasagna and prime rib. Considering I’m doing the low carb diet, I settled on a piece of prime rib cooked a perfect medium-rare.
I was thankful that my infectious disease doctor gave the go ahead to have my picc-line removed two days before Christmas. The visiting nurse came to my house to take it out, saving me the trip into Boston, which was nice. I’ve noticed I’ve lost some serious muscle in my arms since the picc- line was put in at the end of August. There’s a strict no lifting heavy weight when it’s in. It was a long four months having it in, and I was pretty much at my wits end with doing the medication three times a day.
2017 is officially hear, and once again I was in bed before midnight, missing the fireworks on the television, oh well, there’s always next year. I did grill outside four New York Sirloin Steaks for New Years Day lunch, and mine was delicious. I hope everyone has a fantastic 2017,even with all of our issues living with spina bifida, we owe it to ourselves to enjoy our lives to the fullest. Until next time…

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Thanksgiving Done… Onto Christmas!

Well, I’m about a week late posting this one, but what the heck. Boy, do I miss working as a Chef. Over the years I worked many Thanksgiving Days and loved every minute of it, it’s what us chefs do, we sign up for it the day we decide to become chefs.I miss everything about it, it’s a lifestyle that many people cannot handle.img_0489 Since I stopped working and went on disability, I didn’t have much choice in the matter, there’s been something missing in my life. It’s made me more self-conscious, depressed, moody, and a feeling of worthlessness that I’m not working. When Thanksgiving rolls around I love helping out with the dinner, even though my back,legs, and hips have been giving me issues for the last few years. On Thanksgiving I’m in charge on the turkey both cooking and carving, the gravy, homemade cranberry sauce, and a homemade pie or two, and this year was no different. For a couple of days helping out puts a smile on my face, and I could use more of those days. Now that Thanksgiving is over, it’s almost time to start with my Christmas baking, which I really enjoy, heck I can even decorate cookies sitting down, which makes it easy on my.I managed to get a few photos on my iPhone of some of the food I made. img_0492img_0493

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What If…

What if… That is what I’ve been asking myself most of the day today. The thought of “What If” enters my mind on occasion, however, something usually happens for me to start thinking about it. This being Columbus Day Weekend, I decided to go for a ride and do some errands. If you were wondering, yes, I do drive. I know some people with spina bifida are unable to drive a car, but I’ve driven since I was 16 years old, and I consider myself fortunate as it gives me independence in my life. On the way home I stopped at a local farm stand that also serves ice cream. After I ordered my frozen yogurt in a cup,a scoop sugar free moose tracks and a scoop of sugar free Kahlua fudge. I went to my car to eat it. It was a pretty nice day out for October, cloudy but a bit on the warm side, I had both of the side windows down in the front, and I was enjoying the weather. As I’m sitting in my car eating my frozen yogurt, I was gazing out the window looking at everyone enjoying themselves. The one thing that really got my attention were all of the families that were enjoying themselves, the parents with their children and that’s when I started to wonder. What If? What if I wasn’t born with spina bifida? Would my life be drastically different? Would I be married? Would I have children? In all honesty I think my life would be different. Would it be for the better, I can only wonder. If it was different, I can picture myself with my wife and to kids going to the ice cream stand and enjoying ourselves. I can picture my self carrying one of my kids in my arms to go to the window to place our order, I can picture all of that. Doing the things that a dad does. Sadly for me, that’s never going to happen for various reasons. I have to admit, as I was watching families enjoying The Columbus Day Weekend, I was pretty jealous.And I am not the type who usually gets jealous.I’m sure we all have the “What If” moment. Personally, I try not to think about it to often because it just gets me down and depressed, and that isn’t a good place for me. I’m sure it will pop up a few more times, especially since the holidays will be soon upon us.Today, I’m going to give myself time to ponder and reflect on what might have been, even though I probably shouldn’t. What If……

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Another Hospital Stay…. and a PIC Line.

Well I almost made it the whole summer without being admitted to the hospital. This past Thursday I was released after a four day stay for another UTI most likely the cause is the left over hardware I have from my artificial urinary sphincter that has been deactivated for years, which has been causing me to have infections. This issue has been my main problem for several years now. My weight loss goal is still in full effect and I’m sure I can reach my goal which will enable me to have the surgery to remove the left over hardware that’s inside of my body. My symptoms piqued a week ago today with fever and chills and I made the decision to go into Boston to the hospital. After a few rounds of tests, they decided it would be best to admit me and treat me intravenously. My temperature reached 102.5 on Tuesday, which caused the doctors to up the dosage of the medication they were giving me. At some point the decision was made that I would be sent home with a PIC line, not exactly what I wanted to hear but my choices were very slim. The PIC line was put in late Wednesday afternoon. After two unsuccessful attempts to put the PIC line in my right arm, they pain was just too much for me. The nurses decided to try the left arm, which was successful and pain-free, though I now have a nice bruise on my right arm from the two failed attempts they made. So the plan now is to have the PIC line in until my next appointment which is on the 15th of September. Now for the next two weeks I administer medication to myself three times a day, which isn’t so bad. At least I got to enjoy the summer without a hospital stay, and I got to enjoy the pool, since swimming with a PIC line is a no-no. Hopefully my visit in a few weeks will be a positive one and they will be able to remove the PIC line. The last time I had a PIC line was for four months and I’m keeping my fingers crossed this time around…

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My Weight Loss Goal

My catheter change was last Friday and well, it was another catheter change. This time around it was a bit more painful than usual even though I took some pain medication about an hour before the procedure, perhaps I should have taken it earlier, I’ll give it a try during my next appointment in September. As I was laying on the table for the procedure, my urologist told me that my goal weight would be 200 pounds for him to do the surgery, that’s 50 more pounds to go. It’s going to be a challenge, though I’m pretty excited with my current weight loss of 55 pounds. Honestly, I think that’s pretty good, a 55 pound loss since January the 7th. My goal is to reach 200 pounds by the end of December, I think that’s pretty realistic, it’s about 10 pounds per month. I’ve been pretty strict, though I give myself a re-feed day where I’ll eat a bit more carbs while cutting on the fat and protein. The re-feed day seems to work, it helps replenish nutrients I may have lost during the other six days where I’m pretty strict about my carb intake. I plan on using the month of August to really get cracking and finish my book, I’m a bit over 40,000 and I’ve been slacking so far this summer. This book is real special to me even though it’s purely fiction, there aren’t too many books out their where the main character has spina bifida, I think people will end up liking it.
Until next time…

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Birthday and a Cortisone Shot and More Weight Loss

So I turned the big 46 back on July 14th. To me birthdays are just another day as far as I’m concerned. The highlight of my day was getting another cortisone shot in my right hip, my hip has giving me some problems for the past two years now and my doctor wants to limit the shots to roughly twice a year. I put off going for a shot for a while but the discomfort was really starting to bother me. It was a relativley an uneventful visit, the shot has seemed to help a great deal, though there’s still some discomfort. I can’t expect miracles having spina bifida, arthritis, and bursitis, the shot has helped, it’s better than what it was.
My weigh in this past Sunday was great, I’m down a total of 55 pounds since January and I couldn’t be more excited. I have to admit the low carb diet works, though i haven’t been as strict as I was. I’m starting to introduce some more carbs slowly into my diet, I’m at about 100 grams per day and I give myself a cheat day once a week. Nothing crazy, just a day where I let myself eat a few more carbs, sort of a re-feed day to re-fuel my body. The downside to the low carb diet is I don’t have any energy, I’m exhausted all the time. I’m hoping to be down to my desired weight by the end of the year, so my urologist can do a urinary diversion surgery (Ileal Loop). With the surgery I’m hoping to have a much more favorable quality of life as life with a Foley Catheter is a pain in the ass. Back to the urologist on Friday for another catheter change, I’ll have an update on Friday night.
Be Well…

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June Catheter Change

ca00083_ ds00177_ my00140_im00166_r7_flexible_cystoscopythu_jpgI’m about a week late with my recent catheter change update, so here it goes. Last Wednesday was my latest cath change and I have to admit the every six weeks into Boston is getting a bit old. I’m hoping the more weight I take off the sooner I can have the surgery and do away with the every six-week catheter change with my urologist in Boston. I’ve written about this procedure before on my blog and it does not get any easier. While most patients with spina bifida are able to self-cath, I am not, there are just too many false passages leading into my bladder which prevent me from catheterizing myself. Before the procedure I take 500mg of Cipro which is prescribed by my urologist, I also take a 5mg table of Oxycodone which helps greatly with the pain and discomfort in dealing with this procedure.Unknown While I’m not a big fan of pain medication this is one of the only times other than when I have surgeries when I’ll take a pain pill. For the most part the medication does help, though not always, especially after you’ve had a guide wire and a cystoscope go into your bladder. Usually after the procedure there can be some blood going into the catheter bag but this time I didn’t have any which was a good sign. My urologist also wanted me to take Cipro once a day for a few days just in case and to prevent any infection that might happen. I’m hoping I don’t have too many of these catheter changes left as I’ve lost 45 pounds since January 7th, I still have way to go, my recent weight loss success has given me the confidence to push even harder to lose more weight. Hopefully everything will work out… Unknown

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