The Importance of Reading the Labels.

A few months back, I wrote about Robert and his low platelet count – the tests and the results.

Well, he was prescribed Prednisone to take for a few months to boost his platelet count. Then, once it gets into the “acceptable range” he will be weaned off the medication and monitored to see if his platelets drop again. So, he has been taking the medicine. But apparently not enough.

When he went to the doctor last week, the doctor was concerned because the count was not as high as it should have been at this point in the treatment. Plus, he was quite surprised that Robert was not feeling any of the real side effects from the meds other than a decreased appetite and a little difficulty sleeping. He hasn’t been dealing with the swollen feet, finger or hands, agitation or nervousness or many other things. The decreased appetite and sleeping problems are also not that bad. Of course, when he commented to Robert that he should be halfway through his second bottle of meds and he is still on the first one, Robert began to suspect something.

Neither one of us are entirely sure where it came from, but for some reason, we both thought he should only be taking 1 tablet a day. Turns out, that isn’t the case. He is supposed to take 8 tablets a day. No wonder he wasn’t feeling that many side effects! That has changed and he is now taking the 8 pills a day as instructed, but it brings up a very important point.

It is very important to read the instructions on medications and make sure you are taking the correct dosage. Too much or not enough will have results different from what is expected. In this case, Robert’s platelet count was not going up nearly as fast as the doctor thought it should and was going to consider some alternate treatments. Instead, we are waiting to see if he responds the way the doctor thought he would when he is taking the correct amount of medication every day.

This is also important for a care-giver. Sometimes, the person you are taking care of may not be taking the right amount. Instead, they take the amount they wish to take. It is up to you to make sure you read all the prescriptions and dosing information to be sure you are giving the correct amount. It could make a huge difference in how the person feels and responds when taking the medication as really instructed.

A Bleesing in Disguise

It seems my refrigerator decided that it wants to be a freezer. Really. My refrigerator started to partially freeze things for some reason. That does create a bit of a problem since I don’t like my milk to be slushy when I drink it. So, on June 13^th, I called my home warranty company to report this issue.

Little did I know that two months later, I still wouldn’t have this problem fixed.

Long story short, there was a serious of missed appointments from the contractor that was supposed to be fixing the issue, wrong parts order and a bunch of misdiagnosed problems. They kept saying it was one issue and ordered parts to fix it only to find out that really wasn’t the problem and another part ordered. In fact, at one point, my refrigerator was doing double duty as a freezer. Everything in there was a solid block of ice. That makes it difficult to add milk  to your cereal or any other food recipe that calls for milk when it is a gallon sized milk cube. 

Finally, after the 6^th no call/no show we told the home warranty company that we wanted a different contractor to come out and repair the problem. We were tired of the original company that was assigned and all of our issues with them. Lies, excuses, wasted time and parts being held together by duct tape had made us reach our breaking point. We wanted someone new to come out. Thankfully, the home warranty company listened to us. Either that or the complaint filed with the BBB was enough for them to understand we were highly ticked off at the whole thing. A new contractor was assigned; that turned out to be the biggest blessing of all.

The new contractor showed up when he said he would which was a huge point in his favor but that was just the beginning. Robert gave him a brief history of the problems, he took a look at how it was being held together with duct tape and said “You need a new refrigerator”.  He said the parts would not go back together 100% correctly at this point and we would always have issues with it no matter what so it needed to be replaced. Five minutes in our house and that was his recommendation.  Woohoo!

We had two options for replacement. We could receive a comparable model refrigerator or we could have a check cut for the cost to purchase one ourselves. We opted to have the check cut and purchase one ourselves because we wanted to upgrade. Our current one is a black side by side and we want a stainless steel French door. A little more pricey, right? Not necessarily. We have actually been able to find one that we really like at one of the nearby outlet stores for just a few dollars more than the check we are going to be given. Granted, it might have a few scratches on the side and maybe a dent on it, but I can live with that. It was bound to happen anyway from day to day use at my house.

Now, I just have to wait to receive the check and for it to clear the bank; I have to wait for the refrigerator to be delivered to my house. I know this adds a few more weeks to the wait. I can see the end in sight, though so I am okay with that. I am getting a new refrigerator to replace the one that I currently have and it will cost me next to nothing; an upgraded model to boot! I would consider that a huge blessing in disguise.

The reason I share this story is to remind you (and myself) that many times the current hardship we are in leads to a greater reward. We just have to get through whatever it is that is going on. I have spent so much of the last two months angry and frustrated with everything that has been going on that I couldn’t see the bigger picture. How many times can any of us say that about something that is happening in our lives at this precise moment? We get so caught up in how horrible life is today that we can’t see beyond the awfulness of it all. So many times, the trial that we are enduring today is preparing us for something so much greater that God has for us. He is just waiting for the right time to reveal his ultimate plan for us. In this case, I have dealt with a lot of annoyances and inconveniences for nearly two months, but the end result is going to be worth it.

So, remember that no matter how bad it all seems today, what God has planned for you tomorrow far outweighs the frustration you have today. I know this is easier said than done but I hope that I have given at least one person a little bit of encouragement about the trial you are going through today. 

The Marriage Relationship and HD

Talk to any "expert" and they will tell you that one of the most important parts of a lasting marriage is intimacy- both sexual and non-sexual. But what happens when a disease robs your spouse and you can no longer show intimacy to you?

That was one of the topics at the most recent HDSA Convention. Debbie Pausig hosted a workshop called Managing Marital Relationships in HD. In this workshop, she discussed the various ways to show intimacy to your spouse as the disease progresses. She herself is the widow of somebody who lost the battle with Huntington's Disease.

In this workshop, she takes everybody through the various stages of the disease and how they affect the relationship. All of the changes to the relationship at each stage. Not just when it comes to having a sexual relationship with your spouse, but all of the different areas of the relationship from raising the kids to handling the finances and cleaning the house. The reality of this disease is that it will affect all aspects of your life together.

Intimacy is about more than just the sex part of the relationship. It is about loving a person for their mind, body and soul even when the physical aspects may not be present. So, how do you do that?

Ms. Pausig has some advice. First, remember what it is that you fell in love with and why you still love him today. Even in the late stages. Learn to just "be" with your spouse. Take the time you have to just sit together and be in the moment. What things do you love about him today that you may not have seen or known in the beginning? The most common thing the non-HD spouses told her during the workshop was the grace and courage that a spouse was handling the progress the loved one was handling the disease without complaining or doing the "Whoa is me" mantra.

She also gave ways to be intimate without having sex. This is a big one because there will come a time when your spouse can no longer be sexually intimate and you have to find a way to keep that love and intimacy alive. There are some great ways to show intimacy that go far beyond what happens in the bedroom:

Kiss your spouse on the forehead or cheek.

Say "I love you" and wait for the response - even if it takes some time and is hard to understand.

Hold hands while watching a movie

Look into his eyes while feeding him and helping him drink

Lean up against her while sitting together on the couch

Stroke his cheek with your finger

Rest your head on her shoulder

Run your fingers through his hair

These are great options for anybody to show intimacy and communicate your love for your spouse, even if he or she is not in the later stages of Huntington's Disease or any other disease that might affect the intimate side of your relationship. 

Being intimate is an very important part of the marriage relationship. Many studies have shown that once that piece of the relationship is gone, the rest of the marriage falters. Sharing intimacy on any level with your spouse can help strengthen you both and face the many obstacles that you will face as you progress down the road that is Huntington's Disease.