The Sunshine State?

After an abundance of rain on Sunday, Monday, and Tuesday we finally saw some sun today here in Florida. Hopefully, that will continue tomorrow, at least for most of the day. We made it to the beach, however, we didn’t swim. We just looked out at the water. It was a magnificent sight.

Looking at such a large expanse of water is always relaxing. To hear the waves hitting the shore is so serene. The water was much calmer today. There were a multitude of sun- worshippers lined up and down the beach that we visited. I think I almost prefer just to look out at the water than to actually get in and swim. This is due to lack of access for those with disabilities, and my dislike of getting sand in places where it doesn’t belong.

I wear leg braces when I walk. Likewise, I use a pair of forearm crutches. By the time I get down to the beach I am usually worn out, as there are usually either a steep set of stairs I have to climb down, or there is a steep embankment I must navigate in order to make my way to the water.

Walking in sand with crutches isn’t easy. The tips often sink down into the sand. Then once I make it to the shore I have to take my leg braces off, which makes me feel self conscious, as my legs are scarred and misshapen. I feel like the eyes of everyone are usually upon me. Just looking out at the water is easier, as I don’t have to expose myself as much to others.

We will see if I am brave enough tomorrow to venture down to the water and show my ugly, scar-riddled legs to the world. If not, I will be happy just to see the water from a distance. It will still bring me peace.

Essential Tips for Someone With a Disability to Take Charge of Your Financial Future

The following is an article written by a guest contributor. His name is Ed Carter, a retired financial planner, who has his own site full of great information. Be sure to check out his website for more financial tips (ablefutures.org).

If you’ve ever been in a situation where money was tight, you know how it feels to try and make ends meet. This is a tough situation to be in, and one of the biggest issues with just getting by is that you can’t account for expenses that you’ll have later in life. Hopefully you’re in a better place than just getting by, but no matter what your current financial picture looks like, everyone can take steps to prepare their finances for the future.

Revisit Budgeting Basics

When you’re living with a disability, trying to make sense of benefits, healthcare, and accessibility needs can make your financial life complicated. We know how confusing it can be, but regardless of your age or stage in life, it’s always smart to revisit the fundamentals of setting a personal budget.

The main purpose of having a budget is to track your money and ensure you’re spending and saving wisely. Beyond that, everyone has their own personal reasons for setting a budget, and as Greenpath explains, whatever drives you will benefit you in the long run. You may want to set short-term goals, but it’s good to keep your primary focus on the long-term, especially when it comes to major expenses that could come up later in life, such as long-term care

While looking over your budget, it may be a good idea to determine whether it’s a good idea to refinance your mortgage. This can help free up some cash for any emergencies or expenses you may have.

When you’re considering these long-term needs, you’ll want to think about protecting your loved ones as well. If you have anyone who depends on you financially, you may have already gotten life insurance. However, in determining whether or not they need life insurance, too many people fail to consider the burden of final expenses.

Getting final expense insurance is an easy way to relieve that burden by making sure your family could cover the costs of your funeral, medical bills, and even other debts. Like with any other type of insurance, the amount of coverage you should buy is determined by the expenses it needs to cover, so you should think about factors like the type of final arrangements you want and other expenses you foresee leaving behind.

Create a Smart Savings Plan

A large part of your budget is determined by income and expenses, but when your goal is to be prepared for the future, any surplus should go into a savings account. Even if you’re just getting started, U.S. News explains how easy it is to build savings by automatically diverting a portion of each paycheck into your savings account. We also love this simple tip from America Saves: create a savings plan! While this may sound overly simple, they report that those who have a plan are twice as successful at actually saving than those who desire to save but don’t have a plan.

Another crucial piece of advice for anyone who has a disability is to take advantage of ABLE savings accounts. Getting an ABLE account allows you to set aside tax-deferred savings without losing access to government benefits. ABLE savings also allow you to maintain autonomy over your own account, which makes it an excellent tool for taking charge of your financial future.

Seek Out the Best Resources

The other important thing to remember is that you don’t have to do it all on your own. An easy solution is to get the help of a financial planner, but the web is full of helpful resources too. For example, the U.S. Department of Labor has tips for making the transition from receiving disability benefits to employment.

There may be times in life when we find ourselves just getting by, but you have so much to gain by being proactive with your finances. Don’t wait to set a budget, build your savings, and take advantage of all opportunities. Your future self will thank you for putting in the effort today!

Six Weeks

Yesterday was my last dose of antibiotics. This was cause for celebration. It has been a long six weeks of medication, home nursing visits, doctor’s appointments, and sleepless nights. There were times it seemed like it would never end.

However, my body has healed. My PICC line has been removed, and life is slowly getting back to normal. Now it is time to once again build up my strength. My body has become very weak, as I have been quite inactive. Working from home has not helped this situation. Despite this, I am thankful to have a good job. Likewise, I am thankful that my body has healed.

I am curious to see what the next few months will bring as we head into autumn. There is a lot to look forward to, especially with Baby Boy here. For instance, Halloween should be fun with a little one. Thanksgiving and Christmas will be extra special as well. Hopefully, 2021 will be a better year for us all. I know I am ready to say goodbye to 2020!

My parasitic PICC line. It felt like a worm slithering through my vein as it was removed from my arm.

Drip, Drip, Drip…

I seem to be living life one drip at a time these days. Four weeks in to being on IV antibiotics and progress is being made, despite the drip, drip, of time. The wound on my foot has healed, for the most part. However, there are still two weeks of antibiotics to go.

I am dreaming of the day when the PICC line will be pulled from my arm. If all goes as planned this should happen the week of September 21. After that I hope things will get back to normal.

In the time I have been down, Baby Boy has begun to crawl. This has presented some challenges, as I cannot always catch him before he gets his hands in to things where they don’t belong. For instance, he has sampled some cat food, explored the bathroom floor, and played with television remotes. I am hoping he hasn’t purchaed anything from Amazon while I wasn’t looking.

The next two weeks will drip, drip, drip on by and my left foot and my left arm will once again be fully operational. I can then be on full-time baby patrol every evening. I’m sure the cats will appreciate that. I know Amanda will, as she has been working overtime keeping our household running. Without her I’d be lost. She has been wife, mother, nurse, housekeeper, chauffeur, and friend all while holding down a full-time job.

Doctoring in the Time of COVID

Going to the doctor in 2020 feels more like how going to the airport used to feel when we still went places. You check in and are “wanded” across the forehead so that your temperature can be checked. Fortunately, mine has been holding steady at 98.7 degrees or so. You are then “interrogated” about your health, with whom you’ve been in contact, if you experienced body aches or chills recently, and then you are allowed to pass through to your “gate.”

I think I might just get a t-shirt made that has my full name and date of birth printed on it so that I can just point to the front as they take me in for yet another test. Today, it was an ultrasound on my neck and arm to check for a blood clot. The area around the entrance to the PICC line that I had inserted into my arm a few weeks ago looked suspicious to my home nurse as she visited today. Therefore, I was sent to see my doctor, who at first thought I had an infection in the line. However, as noted above, it turned out to be a blood clot. Fortunately, it is was not a clot that tends to cause any problems.

So, tonight I find a pressure bandage around my right arm. Warm compresses will be used as I climb into bed. Then tomorrow another PICC line will be placed in the opposite arm so that I can continue to receive my daily dose of antibiotics. I sometimes wonder if all of this is real. Each week of 2020 just seems to get more odd.

Amanda got a flat tire this past Friday. I layed on my glasses last night in bed, which bent the frame and popped out a lens, then news of a blood clot in my arm today just seemed to be the icing on the cake.

I think tomorrow when I go in for my procedure, I’ll pretend like I truly am at the airport. I’ll check my bags, and ask for a glass of champagne as I take my seat in first class, then I’ll recline my seat and drift off to sleep. Perhaps, when I wake up it will be 2021. Then again, I’ll probably just be asked, “what is your full name and date of birth?”

The Eye of the Tiger

Do you ever feel as if you have no fight left within you? Living life in a disabled body, especially when that body breaks down is overwhelming. I have been luckier than most in my life. My independence has not been as limited as others who are disabled. However, the past few weeks has left me feeling like I am down for the count.

Battling a bone infection is tough work. I’ve actually done it a few times in my life. It saps your energy. Being treated with heavy doses of antibiotics is not pleasant, as these drugs often kill the normal bacteria that grows within your gastrointestinal system. This often leads to unpleasant side effects for your bowels. Fortunately, there are probiotics that can reverse these side effects.

Struggling with physical ailments typically increases the anxiety, which often bombards my mind. Usually, my first reaction is to get frustrated, which leads to anger. I often question God why He allows suffering of any kind. I think sometimes it is a way of getting our attention when we are stubborn. This is especially true in my case. I am a very stubborn person, who often refuses to listen to others.

My stubborness led me to avoid treatment for a wound on my foot, which then became infected. This infection then entered my blood and bone, which if it had not been caught in time, could have killed me. This realization has been frightening. According to my doctor, I am still not out of the woods. I will be on IV antibiotics for the next 4 to 6 weeks.

Some days are better than others. Frankly, I feel like a boxer who has been knocked down one too many times. How much more do I have left to give? This is a question I have pondered lately. My body is tired. My mind is exhausted. My nerves are frayed. However, I am not ready to quit.

I came across a story tonight about a little girl who is in the hospital fighting for her life. She has multiple IV tubes running into her neck, which are delivering heavy doses of antibiotics to her body. I pray that this little girl has a lot of fight left within her. What I am battling is minor compared to what she is facing.

One of my favorite movies is Rocky IV. It is essentially a David vs. Goliath story, where a much smaller, slower fighter is tasked with defeating a giant, genetically engineered monster. Just before the final fight sequence begins this behemoth leans down into Rocky’s face and says, “I must break you.” I feel as if that is what this infection has said to me.

However, much like Rocky, I have the will to win. I am bruised and bloodied, but no one is going to throw in the towel. I have plenty of people in my corner, many of whom I know are praying for me. This giant will be defeated. Can you hear the opening chords to “Eye of the Tiger” yet?

The Trash Bag Ladybug Monster

God usually teaches me humility in humorus ways. My latest lesson has involved showering. If you have been keeping up with my blog, you’ll know that I am currently undergoing treatment at home for a bone infection that I got through a wound in my foot.

I currently have an intravenous line in my right arm, through which Amanda administers antibiotics every morning. I also have a bandage on my foot that Amanda changes every other day. I am lucky to have such a loving wife that is willing to do this for me. However, she does like to have fun with me as well.

For instance, in order to shower I need to duct tape garbage bags around my right arm and left foot. This is to keep my foot dressing dry, as well as my IV line. The duct tape that Amanda chose for me has ladybugs on it, which look great with the black garbage bags. Once I am all suited up I look like the “Ladybug Trash Bag Monster.” I then “climb” into our shower, which is the size of a small phone booth. It is fortunate that my shower chair even fits in there.

Getting out of the shower takes a leap of faith, as I am never quite sure how I am going to stick the landing. This morning I gave myself a 9.0, as I did not fall. I also maintained pretty good form through the dismount from the shower chair.

After I am out of the shower comes the fun part, the removal of the bags. This involves ripping strips of hair off of my legs, and some hair from my right armpit. I am beginning to think I should just wax myself down. That way the agony of the tape removal would be lessened. In addition, I’d probably become more aerodynamic as I race through the house in my wheelchair.

Yes, I choose to laugh at these times. If I didn’t life would be a daily struggle. However, I know that God is there. Likewise, I know He sees my struggles. He uses these to keep me humble. I am often frustrated, but I take comfort in knowing God has never taken His hand off of my life. My duck tape with the ladybugs and those black trash bags are reminders that God has a sense of humor. He continues to care for me even when I fail Him.

PICC Your Poison

Coming home from the hospital always does a body good. I slept last night better than I have in weeks. That is despite the Peripherally Inserted Central Catheter or PICC sticking out of my arm. This is the line through which I’ll receive a daily dose of antibiotics through September 21, that is if things go to plan.

This is not the first time I have had a PICC, however, I am hoping it is my last. It is fascinating to watch a PICC line being inserted. An ultrasound machine is used to find an appropriate vein. Then through the use of ultrasound imaging the catheter is guided up through the vein until it reaches a point just above the heart.

The next several weeks will be filled with follow-up appointments with doctors. I’m also going to attempt to return to work here at home. It is going to be an uphill battle, but I have a great partner with whom to fight. Without my wife Amanda I would not be able to get through my days.

I am hoping my body responds to treatment as it should. The sooner all of this is in the rearview mirror, the better. I’ll be praying for strength and endurance for both Amanda and I. Likewise, I’ll be praying for healing. My body is weak, and my mind is weary. However, I know this too shall pass.

I am thankful to have such a wonderful family and group of friends who are willing to help wherever it is needed. I’d appreciate your prayers through this trying time.

Please Shut the Door Behind You

I wish someone could explain to me what sense it makes to wake someone up who is in the hospital every three hours to take their vitals. If someone is critically ill, yes, I can see keeping a close watch on their blood pressure, temperature, and pulse rate. However, for a patient who is stable, and has been since their admission then why the need? Rest to me seems as if it should take precedent over anything else.

If a body needs healing, rest seems to be one of the best ways to promote that. I get horrible sleep in the hospital. It is more like a series of cat naps I take at night. This is because I know that if I try to fall asleep for real, I’ll have someone in asking to check my blood pressure, my temperature, and my pulse rate. This is despite the fact all of those numbers have been consistent for days!

I’m a quiet person who generally doesn’t summon the nurse or an aide for anything, unless I need to use the bathroom. Then I ask for help getting to and from there. Once that is done I expect to climb back into bed and be left to my own devices. If I have my phone and iPad within reach that is all I need. I like my door to be shut and to not be bothered.

This seems to unnerve some nurses and aides. I am a low-maintenance patient who loves to be in the quiet of my own space. That is not to say I don’t appreciate their kindness and their helpfulness, but in all honesty, I’d rather just enjoy the solitude. Maybe in hopitals there needs to be a side of the floor for those who need the extra care and support, and a side for those who just want peace and quiet.

In reality, I am pretty certain none of this will ever change. however, if I am in a hospital to rest then let me do it. I know my body and it enjoys its rest. Let me sleep and I will be gone much quicker out of your care. Yes, I know I sound like an old man who is growling through clenched teeth for medical staff to “get off my lawn!” Nonetheless, I do appreciate what they do. They just need to do it more in someone else’s room. I am fine, I will be fine, and I know when I need to call for help.

What is There to Fear?

If you read my last blog post you know I have been struggling physically the last few days. I thought things were looking up until I went for a follow up with primary care doctor today. The infection in my foot appeared to be getting better. However, upon closer examination the wound on my foot had a sneaky, little hole that was leading down to my bone. Through this hole poured some of the infection. What this means is yet another surgery tomorrow.

As I have gotten older I have begun to question just how much more my body can withstand. I’ve had over 30 procedures done in the 43 years I have been alive. It seems there isn’t a part of my body that has been left unscathed by a surgeon’s scalpel. I have seen large chunks of flesh removed from my body, my head has been shaved bald, and I’ve had muscles removed from one part of my body and transferred to another spot.

I’ve had some great doctors. I have also had some fairly incompetent ones. The nurses, on the other hand, have all been terrific. They are the ones who really know what is happening. I’ll ask a nurse something before I ask any doctor. A nurse, even if they don’t know the answer, can usually do some investigative work and get you the information you need. Plus, they clean up all of the messes!

I don’t mind having surgery. It is nothing that scares me. I’m confident in the doctor who is performing the surgery, so I know I am in capable hands. There are great nurses around as well. Likewise, I know prayers are already being spoken for me. Therefore, it is in God’s hands. What is there to fear? I just hope they ask me what kind of music I want to listen to as I drift off to sleep!

P.S. I had my first test for COVID-19 today. It felt like someone shot onion juice up into my sinuses, as my nostrils begin to sting and my eyes began to water! After that I feel like I can face anything.

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