Trying to Sense Of It All

Today is one of those days that I wish I could make sense of the tragedies that take place in this world. Especially when I have two neices in Kindergarten and teach more this age on many Sunday mornings. To think that they could have lost their lives today, and that 20 other innocent children their age did in fact lose their lives for reasons that I cannot and probably never will understand is heartbreaking.

That doesn't make it any easier, though. It still breaks my heart to know that what seems senseless to me has happened and drastically changed the lives of so many families. Trying to understand it and to make sense of everything that has happened only serves to make us crazy. There are no words that can be said to diminish the pain these families are feeling. There is no explanation that we can be given that will make sense.

For whatever reason, this has happened and we have to accept it. It isn't that God allowed this to happen. God doesn't condone the killing of innocent lives. The truth is that evil exists in this world as a result of our own free will. When so many have turned their backs on God, the evil continues to grow. Blaming God for it doesn't accomplish anything, especially when we are the ones to blame for it.

Instead, all we can do is pray for for those that have been affected by this horrific situation. Pray that God's comforting arms will be wrapped around the families that are suffering, that His healing touch will be administered to those who are injured and that everyone touched by this tragedy will find peace and comfort in Him.

So, tonight, we all mourn for these families and lift them up in our prayers. May they all find comfort in God's unfailing love. His arms are open wide and ready to embrace each and every one of them. And we can also take comfort in knowing that these children are in His arms tonight and no longer suffering.

Is this because of HD?

The Sunday morning before Thanksgiving, when Robert got out of bed, he immediately fell back on the bed. It took two or three more tries before he was able to stand up, but even then he was having a problem. The problem? He was extremely dizzy to the point that he couldn't stand up. Since this was a new experience, it worried us. Especially when he began to complain of these dizzy spells at all sorts of different times and when doing all various activities. It was always worst when he would get up first thing in the morning, though. And it continued to plague him daily.

Why is this happening? Is this a symptom of HD that we are not aware of? What is going on here? All of these thoughts are going through our heads as we wondering what this is all about. We were worried that he was beginning to experience a symptom of the disease that was uncommon and one that would have a major impact on his day to day life. I couldn't really find anything on any of my favorite HD websites that gave me any insight into whether or not it was some lesser known symptom or something. It was a bit nerve-racking for us.

Robert, being Robert, didn't want to go to the doctor. He kept saying that he would get over it. He hates doctors so he fights going to them unless he absolutely has to. So, I made an appointment for him that Wednesday and told him to go. Turns out he has vertigo.

Vertigo is a condition caused when tiny crystals that normal reside in your ear canal come loose so to speak and float around in your ear canal. This throws of your equilibrium and causes you to get dizzy, especially when you move your head certain ways - such as getting out of bed in the morning. There are any number of causes for it and it is hard to say what precipitated the condition in Robert.

The good news it is treatable in the majority of cases with some medication. So, Robert has been taking the medication and taking time to get out of bed in the morning, or attempting to sleep sitting up some nights when it is really bad to help the crystals return to their normal position so that the dizziness will go away. And he has noticed a lot of improvement.

Turns out that about 1% of people with HD have experienced symptoms of vertigo. Not enough to really make a connection as it being a real symptom of the disease. It is more of a random thing. But this experience does highlight the constant sub-conscience fear like state that a lot of people affected by HD live with. Every time something happens clearly out of the norm, like sudden onset dizziness, you worry that it is HD. Then, you put of seeking medical treatment for fear that you are right and the doctor will say it is HD and nothing can stop it. Because, once the more serious symptoms start, that is the beginning of the end. But as we learned this time, the vertigo is 99% likely to be unrelated to Robert's HD and is treatable.

We know that one day we will go to the doctor and be told that it has started in Robert. That he has reached that magical age for his body and the disease has begun to take him away from us. And we live each day knowing that it is one day closer. And we worry that some random thing may be that first symptom. But, we also have to remember that the random thing may not be HD at all. So, even though we may not want to hear what the doctor has to say, we need to go and hear it from him. Because, as it turns out this time, it could be something else entirely that is serous but not related to his HD at all.

Making Memories to Last

For those of you that know Robert and I, you know that we tend to do a lot of traveling. We like to take trips to visit family and enjoy time alone as well. In fact, I don't think we have taken one vacation since we have been married that did not involve going some where, even if it was only for a few days. A lot of people don't understand why we always go somewhere and spend money to do this when we could save it and just relax at home.

It's quite simple really. It has to do with a website that I once came across that gave advise for the caregivers of those diagnosed with HD. This website recommended that you should make memories with the infected person while you still can and document them with pictures. Then, make a scrapbook of some of the best parts of those memories so that later in life, they can be looked back on and even if the HD person cannot necessarily say it clearly, with the help of the scrapbook, he can share that he is thinking about that time and the fun that was had. I always thought that was a great idea. Plus, that gives you both something to look back on fondly and remember even when things are at their worst.

 I took that to heart. I know that there will be a time in the not so distant future that we will no longer be able to travel like we do today. Reality is that there will come a time that Robert will no longer be able to travel anywhere and we will be forced to stay home instead of traveling together like we do today. Today is all we have to make the memories that will sustain us for the rest of lives. Today is our oppourtunity to enjoy time with family and friends and make the memories that we will look back on later fondly.

So, that is why we do it. Maybe it isn't always the best idea to go somewhere and maybe we should save some of that money for that day that Robert can no longer work or put it back into some repairs that need to be done around the house. Those are great ideas. Robert and I have talked about it many times but we always come back to the same question. Which memory would you rather look back on it 10 years? The time and money you spent on a cruise for your anniversary when you could have used it to replace the carpet in your bedroom or that you put carpet in the bedroom when you could have taken a cruise for your anniversary? What if you knew that there would come a time where you would be replacing the carpet instead of taking a vacation simply because your spouse is no longer able to travel? Would that make a different?

 We all have our own answers to these questions and none of them are right or wrong. The point is that we all need to spend a little some time making the memories that will last and mean the most to us. Robert and I will continue to work to make the memories that will last us a lifetime knowing that one day, we will opt to replace the carpet in the bedroom simply because it will be too burdensome for Robert to travel anywhere. We will collect memories and document them today so that we will have something to enjoy tomorrow.

Her love lives on

 

It has been two years since Cheryl left us and became free from a life ravaged by Huntington's Disease. She went on to heaven where she got to dance and sing with Elvis every day. I know she is having the time of her life - free from the awful affects of the disease and from the pain and suffering she had to face throughout her years.  We miss her greatly still but know that she is much happier. Especially since she was joined by her mother earlier this year. The two of them are probably fighting over the Dallas Cowboys and Cleveland Browns or the Texas Rangers and Cleveland Indians. Cheryl was a diehard Cowboys and Rangers fan - which she passed on to her kids and Margaret loved any team from the Cleveland area. There was always a lot of trash talk anytime the teams were playing. It was fun to watch and I am sure that hasn't changed a bit.

At her funeral, the pastor said something that still sticks me two years later -  It's not about what the number of years that you were given but what you did with the years that you were given.  In the case of Cheryl, she may not have been given as many years as some others, but she still managed to do a lot with the short amount of time that she was given on this earth. As a result, many people have been touched and are better as result of the life that Cheryl led. She loved with all of her heart and passed that love on to anybody she came in to contact with. Not many people could walk away from her without feeling the love she had for life and those around her.

While I did not have the oppourtunity to spend a lot of time with Cheryl as the disease had already began to rob her body when I first met her. Still, I feel blessed to have the opportunity to have known her even for a little while. The life that she led still lives on in the lives of each on of her children. They are a living testament to the life that she led and passed on to others. She continues to live on in the life of others - living proof that she did a lot with the years that she was given on this earth.

While each one of still misses her, we know she is better off because she is not longer struggling with the effects that HD has had on her body. She is better off today and we can take comfort in that fact even though we still miss her smiling face in our lives.

Cheryl, we love you and will continue to show the love you showed us to the world around us.

And So it continues...

We are so frustrated right now!!!!

The minimal amount that Bill is receiving from Social Security each month is not enough to pay for an assisted living place. Not to mention that it will not pay for an apartment and allow him to eat each day, too. 

So, it was recommended that we try for Medicaid because that will cover the additional costs for an assisted living place. Sounds easy enough. But guess what! There is more than one type of Medicaid. He is covered under the first type that helps to cover additional medical expenses but not the second type that helps to pay for an assisted living facility.  Based on the initial assessment done over the phone, Bill doesn't qualify for this type of Medicaid. The bright spot is that they have agreed to send someone out to personally assess him and see if they feel he might really qualify.

So, an interview has been set up. But how are these people going to come out and assess him in about an hour? It isn't that he needs constant monitoring but he does need some coaching to do things like shower and brush his teeth each day as well as some assistance in eating something more than a tv dinner from the microwave. I mean, he burns his frozen waffles when he puts the in  the toaster more often than not and he has burned his eggs and bacon on more than one occasion. So eating is something that he needs help with and Robert and I cannot be here all day to make sure that he is eating well and not burning the house down while he trys to make it. But, nobody can make this determination by spending a few minutes with him. It takes a day or longer to really see and understand what all of his issues are. 

We have already gone through this whole thing with Social Security where they have determined that because of his physical as well as cognitive issues, he cannot keep a job. So, why is it so hard to determine that he needs the assistance as well? A big part of the reason that he is still with us is because he cannot live on his own by himself. He needs somebody around that can check on him each day and make sure that he is okay. And be reminded to change his clothes each day. But it is stressful for Robert to have him with us day after day. Especially when he follows Robert around like a lost puppy and doesn't seem to like it if Robert wants to spend time with me and not him. And Robert doesn't need the additional stress in his life. Robert has the same disease as Bill and the stress can make it worse. So, he needs to go. But finding that place is getting more and more frustrating each and every day.

I expected a long and drawn out process when we started all of this, but we are nearing the two year mark since we began this whole process. To me, that seems a bit excessive. And gets more and more frustrating by the day since we cannot seem to find the solution to this problem. Because, if we are honest about, even Bill is tired of living with us and wants to be out on his own. Even though he understands that assisted living means that he will not be totally on his own, he feels he will have more independence than he does here. 

But again, we have to wait on somenone else to make a determination about Bill's condition when that person really has no understand of the disease that he has and how it affects him. If the people making the decisions about the type of care a person with HD needed, then we wouldn't have to jump through this million and one hoops to get him the support and care that he needs. Understanding the disease and how it affects those living with the disease should make the decision that much easier. So, again we are waiting and praying that another person will make the decision we want them to make - the decision that will help Bill get the care he needs.