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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Colostomy Issues With Warm Weather

I’ve had my colostomy since 2005 and I’ve adapted pretty well to it. The only issues I’ve had with my ostomy is in the summer time and the warm weather. Most of the time I can get about four days with the ostomy appliance while changing the bag every two days. Once the warm weather starts is when I tend to run into problems. The heat plays havoc with my colostmy. I find I tend to leak a great deal with the warm weather. The last two weeks have been an issue for me, I found myself changing multiple times a week instead of the usual two times. I found myself leaking constantly through the appliance, on a couple of occasions I had to change the appliance two times in one day, I just couldn’t get a good seal with the barrier rings, it seemed my body heat caused the to melt down against my body quicker than normal. Talk about being frustrated, there’s nothing worse than getting finished done changing only come to find out your leaking through the appliance and you have to do the process all over again. I think it’s finally starting to get better, perhaps it’s just the initial reaction every year to the heat, because it seems I have this issue every year once the warm weather kicks in. I also though it could be from the weight loss I’ve had. My stoma is below my skin level so I use an appliance with convexity, the weight loss could be causing issues making it more difficult for me to get a proper seal around the stoma. I’m hoping I have the leaking issue taking care of, because it’s been a real pain in the ass having a colostomy as of late…

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3M Nexcare No Sting Liquid Bandage For Ostomies

Nexcare For those of us who have an ostomy, there may be certain items your insurance company will not pay for, for me one of those items is the no sting liquid bandage which many of us use. When I first got my ostomy back in 2005 I couldn’t believe how much the medical supply companies were charging for a small bottle of the liquid no sting bandage spray, it was like highway robbery. I was paying close to twenty dollars a bottle of 3M Cavilon no sting bandage spray. Depending on how often you have to change your appliance the cost of the spray can add up quickly. I made it my mission to find a cheaper alternative to the high priced version. Low and behold after about thirty minutes on the internet I found one that was not only cheaper but it was made by the same company, with pretty much the same ingredients. You see, 3M has a product for sale marketed to the general product under the Nexcare brand, and it works wonderful, just as good as their Cavilon brand which seems to be available through a medical supply store.
The bottles are about the same size with the Cavilon brand spray containing 28ml, where as the Nexcare brand contains 18ml. It seems to me that they are trying to take advantage of those with ostomies and medical issues by trying to market the more expensive product to us. Granted you are getting more liquid spray in the Cavilon brand, it just seems crazy to pay for the more expensive product when there is an alternative from the same company. Recently a few months ago I started to purchase the Nexcare no sting liquid bandage through Amazon, I’ve been getting a package of three for about fifteen dollars which is still better then paying twenty dollars for one bottle. I’m sure if I shopped around online I could probably find even a better price for the spray, there’s always someone with a better price. It’s just very discouraging how companies charge differently for their medical products. They seem to want to charge a higher price for those who use these products more often, but charge the general public less for pretty much the same item. So if anyone has an ostomy and is looking for a cheaper but just as good no sting liquid bandage spary please check out the Nexcare no sting liquid bandage spray by 3M.

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CranRich Cranberry Supplement For Urinary Tract

CranrichHaving a Foley Catheter in for as long as I have had has caused some unfortunate issues over the years for me. One of my main issues has been the constant urinary tract infections and bladder infections. Without fail I would get at least on UTI a month which was too much for me to handle both physically and mentally. I would drink a glass or two of cranberry juice a day to no avail, the infections kept on coming. As I started to diet I was worried about my carb and sugar intake which we all know, cranberry juice is high in carbs, and being on The Atkins Diet, cranberry juice would have consumed a good portion of my daily allotment of carbs. So I decided to do some research on a cranberry supplement that wasn’t loaded with carbs and I came across the CranRich brand. The reviews on this product were great and it was nice to know there are other people out there who don’t have spina bifida but who are experiencing UTI’s and bladder infections. Many in the spina bifida community I’m sure have experienced the same issues that I’m going through in dealing with these issues, and I’m sure many have turned to cranberry juice.
Cranberries I have to say after roughly three months of taking 1000mg of CranRich, that’s two pills a day, I have not experienced any bladder infections or UTI’s, which is news to my ears. It has helped immensely in cutting down on doctor’s and emergency room visits, some months for me I’d end up having to go multiple doctor’s visits a month because the infection were not getting better. The pills are an extra concentrated formula which gives you a greater amount of cranberry into your body. I don’t think you could drink enough cranberry juice to equal the amount which is contained in the pills. My urologist even commented that he hasn’t heard from me concerning UTI’s and bladder infections and I told him I started taking a cranberry supplement and he told me to keep up the good work. I’m happy I found something that worked while not effecting my dieting program, I get the necessary cranberry supplement without wrecking havoc with my diet. I plan on keeping on track with my two 500mg pills a day, which I take in the morning and at night to help my bladder and urinary tract, I’m hoping that all my fellow spina bifida compatriots have found something that has worked for them, whether it’s by drinking cranberry juice or a cranberry supplement, as we all know dealing with bladder infections and UTI’s sucks big time…

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Moving Right Along With The Weight Loss

Back in January I made the decision to really make an effort to lose weight. Ever since I stopped working and had to go on disability I gained more weight than I wanted. For a brief moment and I mean a very brief moment, I considered having bariatric surgery to help me lose the weight. What changed my mind was going to the bariatric seminar at a hospital in Boston.I’m not one who enjoys having surgery and after reviewing the options I decided I would really buckle down and go on a weight loss regime. The options for surgery looked quite dangerous to me, more dangerous then anything I’ve gone through with spina bifida. It seems with me, I’m the person who is in that small percentage where complications arise and I wasn’t to thrilled at hearing of the possible complications associated with having bariatric surgery. I chose The Atkins Diet because I followed something similar years ago and had great results. The best part was I maintained a good weight for about fifteen years, until my artificial urinary sphincter failed (this was the third one) and my urologist decided a Foley Catheter would be best.
Initial weight loss on Atkins was amazing losing around twenty pounds in a few weeks, keeping my carbs between 18-22 grams per day. I kept my carbs pretty low for about three months, which at that point my primary care doctor suggested I increase my carb intake slightly. Currently, I’m taking in around forty-five grams of carbs per day mostly in the form of leafy green vegetables and berries, with the occasional protein bar thrown into the mix, usually a Quest Bar or an Atkins snack bar, both bars are relatively low in net carbs and the taste good.
So far I’ve lost about thirty-five pounds since January, I’ve started to incorporate more cardio into my workout which is twenty-five minutes four times a week, this has been great with helping to take more weight off. This weekend I plan on to starting lifting free weights which I have in my basement and I’m hoping it will accelerate the weight loss even more. I try to give myself one cheat day a week, nothing real crazy, just enough to try to trick my metabolism so it doesn’t get to stagnant. While the weight loss will be great for my over all health, it will help greatly in healing for the surgery which is the main reason for for me dieting. I still have a little ways to go, I feel I’m on the right path…

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Feeling Self- Conscious Using a Cane and Wheelchair

A few posts ago I wrote about how I’ve started using cane for long distance walking and that I had placed an order for a wheelchair. Well, I’ve found myself using the cane more and more, not around the house or anything but when I leave the house to do errands. Granted, the cane does help me with my balance and keeps some weight off of my hip which has been giving me problems as of late, arthritis and bursitis will do that to you. For forty-five years I’ve managed to walk on my own without any assistance of crutches or a wheelchair and this year has changed all of that. My wheelchair came in a few weeks ago and I’ve already have used it a few times, once to go to the Christmas Tree Shop with my mom and once to go see my grandmother in a nursing home, even with my handicapped plate on my car there’s still a great dealing of walking around in those places. I think it just bothers me knowing I’ll be needing assistance when I walk pretty much from now on, not exactly what you would call a big confidence booster.
As far as the hip pain goes, my orthopedic wants to limit the cortisone shots to twice a year, and I’ll be making an appointment sooner than later considering the pain in my hip is starting to bother me even when I’m sitting down writing this blog post. The last time I got a cortisone shot it only helped for about 3 months, I’ll probably have to start using an ice pack and a heating pad to help manage the pain. My self-confidence and self-worth have taken a beating as of late as I’ve had to rely os assisting devices to get around. I’m not sure how this is going to play out, I’m hoping I become less self-conscious about using a cane and wheelchair especially since they are helping me. We’ll see…

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