Feeling Trapped, Overcoming your weaknesses, Gaining Strength and Persevering

Last night I was watching the Lifetime movie “Cleveland Abduction” about the three girls in my hometown of Cleveland, OH who were abducted and held captive for 10 years.  I couldn’t help but watch this movie with tears in my eyes.  As I tried to pull myself away, I kept seeing familiar images much like the actual events that took place 2 years ago.  My heart told me to keep watching this movie as I knew that I had to learn from this amazing story of survival.  It is an outstanding example of the strength to keep living through the worst “Hell” imaginable….and persevering through and making it out…escaping the evil that held you for so long.

Sometimes, I feel trapped like these girls.  Unable to get away from the ugliness that is Huntington’s disease.  It beats me down, makes me so exhausted until I can’t even keep my eyes open.  It robs me of my time with my son and husband.  I feel like there is nothing that I can do to better my situation.  But then I see amazing stories like the tragic events on Seymour Avenue and I think to myself “I can beat this.  I am tough.  I can get through.”

But it’s hard.  Sometimes, you don’t just have HD standing in the way, sometimes there are many other factors that are also weighing you down…money problems, marital issues, uncooperative children, other health issues (for me it was breast cancer), job woes…you name it.  All the shit can pile up so fast you can’t even breathe.

But we do breathe.  I remember back to a time when I was helping women in childbirth.  I was certified as a Doula and part of a program where I helped women who needed additional support through planning, birthing and caring for their child.  Many times during labor, the pain would get so bad that woman would cry “I can’t breathe!”  I would lightly whisper in their ear “But you are breathing.  You can do this.  Get your control back”.  I would lightly put my hand on their chest so they could see it rise and fall.  I would help them recover from the intense contraction….and then we would rest until the next contraction came.  We then would breathe together…finding a rhythm and focusing on that survival and the ultimate goal of bringing the baby into the world.

Sometimes we forget the pain of the past but when you have Huntington’s Disease, a new struggle seems to find its way into your life over and over and over again.  So, what do we do when we are feeling this way?

Drink lots of alcohol.

Just kidding…but yeah sometimes, that feels like the best option huh.  I would say that alcohol abuse adds more shit to the pile.  However, the tone of this comment is lighthearted and humorous right?  My point is, you have to have a good sense of humor to get through some of the crap that life deals you.  Know when to take things seriously though.

Find something that makes you happy every day.

That’s an order.  Everyday go out and take a few minutes to focus on something that makes you really happy.  A special coffee.  A picture of a fluffy white bunny.  Chris Hemsworth on the beach…whatever.  Find something.

Vent if you have to.

Cry.  Have a pity party. Punch a punching bag.  Run around the block.  Scream on the top of a mountain.  But then regain your cool.  Take a cold shower.  Take a nap.  Wake up ready to get back on track again.

“This too shall pass.”

Remember these words because they are true.  Tough life experiences come and go like labor pains….giving us a little break in between to catch our breath. Remember that there will always be good times ahead.

Do your part to make the escape.

When the time comes and you see your window, escape from the hell that you are surrounded in.  Don’t sit there and wallow in your own despair.  When the opportunity comes to get on that new medicine that may help your symptoms…take it!  When you have an opportunity to make good positive changes in your life, don’t delay.  Sometimes we have very small windows of opportunity that can quickly pass if we are not paying attention or we are too scared to get out of the hell that we are in.

Do not lose hope.

Focus on what you really want in life and believe that it can happen.  It’s what I am doing every day to cope.  I hold on to my hope and it’s what helps me prepare for that day that we have found the cure or treatment for Huntington’s Disease.  When that opportunity comes, you better watch out!  I’ll be punching through that locked door to freedom.

Freedom from this horrible Huntington’s Disease Abduction.

Financial Best Practices when you have Huntington’s Disease

In a world of “quick and easy” electronic payment setup and credit card points membership rewards, we often lose sight of what is actually happening with our own finances.  Add a layer of Huntington’s Disease related dementia and memory struggles and you can find yourself in a pile of debt.  As some of my own personal “oopsies”, I have list several areas to watch out for.  This is a list that many people might benefit from but I really think that it is worth mentioning to my peers with HD so that they start thinking about the way in which they handle their personal finances.


Nasty Marketing Scams to Watch Out For

  1. Do not sign up for anything that requires you to try a “trial membership” …then requiring you to opt out of an item or you will automatically be billed. Guess what.  The entity in which you are signing up for membership is banking on the fact that you will forget to opt out.  Also, they purposefully make it extremely difficult to cancel your membership.  I promise you that you will be wasting money on items that you may never use just because you may forget to opt out.
  2. Try to avoid memberships that are automatically charging your credit card or bank. Again.  The entity in which you are signing up for membership is counting on the fact that you will forget to cancel if you are not using the membership. Also, they purposefully make it extremely difficult to cancel your membership.  I promise you that you will be wasting money on items that you may never use just because you may forget to cancel.  If something were to happen to you, your loved ones may not know which memberships they have to cancel on your behalf.
  3. Avoid memberships that will automatically send items to your home, and then require you to return items if you’re unsatisfied.  You can bet that they are counting on the fact that you will forget to return the item or your busy life will make it too difficult to make a trip to the post office.
  4. If something states that is “free” on-line but they still want you to register your credit card, watch out….read the fine print very carefully because you could be accidentally signing yourself up for one of these opt-out type memberships….Nothing is free! Personal story: I recently had an issue with Experian. I was just trying to get a quick copy of my credit score to share with my husband so we could refinance our house. I accidentally signed myself up for a trial membership in the process of registering my credit card for what I though was just a $1.00 fee. I started getting billed every month and getting membership emails. When I went to go cancel, the website stated that you have to call a certain number. When I called that number it took me to a marketing team in India that was trying to sell me something else. I was beyond pissed.  Finally I was able to find another customer service number…but it wasted a few hours of my precious life and Experian ended up getting 25 extra dollars because of my stupid mistake.
  5.  Avoid sales that require you to use the store credit card.  Know what your APR is on every credit card and be honest with yourself about what you are “actually paying”.  After taking this into consideration, is the item really on-sale?
  6. Unsubscribe from all email communications. As hard as it may be for you to not the get latest sale information at Macy’s or Pier One….you will be better off. This type of communication is a constant temptation including direct links to buying items that you want on-line. It is also a distraction at work. I can’t tell you how many times I had to remind myself to not be tempted to open that email from Victoria’s Secret…I just had to find out when the semi-annual sale was going on and then it lead to browsing the on-line catalog….probably inappropriate browsing material when I was at work.

Creative Banking

  1. If you get electronic bills – make sure to also send paper bills to your house – just in case anything were to happen to you.
  2. Avoid setting up recurring payments unless you have an automatic reminder to make sure you have enough money in the bank. I use my Outlook Calendar to remind me to do everything from checking my available funds to brushing my teeth.
  3. Find a bank that offers a 24 hour grace period (24 hours to get enough money in the bank before you get charged the overdraft fee). Huntington Bank in Ohio has this beautiful thing and it had saved my butt so many times!…and it’s called Huntington Bank which is even more cool.
  4. Reduce complicated transactions. So if you have your Amazon account linked to your PayPal account which automatically deducts money from your bank account every month…you better be on-top of what the fuck is going on. Just sayin.
  5. Consolidate your debt so you only have to pay one source.
  6. Ask your caregiver to pay all of the important bills and make sure that you give them that money first before you spend it on anything else.
  7. If you have one, take advantage of your 401K as an option to save. I know that this sounds strange but I don’t even think about the money that is taken out of my paycheck that goes directly to this account. I hope I can use it for retirement if I don’t make it that far…it’s a way to pass on a bunch of money to my beneficiaries. Some people may say to put your money into an interest yielding saving account…I say that a savings account is probably an area where you will draw money from. A 401K account is very difficult to get money out of …thus making it more likely for you to not touch it.

Getting Rich Quick?  Not Happening.

  1.  Signing up for the next big Direct Sales Scheme? If it is something that you are selling, then you totally love it right? If you totally love it, I bet you a hundred dollars that you will spend more money that you earn on purchasing your “demo items”. You may also earn free items but you will always get nailed on shipping and handling. Always. So, if you think that this is a way to bring in a bunch of extra household income, then it’s probably not going to happen. Maybe it could be a good business if it is your full-time job. But if you have another full-time job and a busy social life…sorry…probably not going to happen.
  2. Do not invest a bunch of money on something without consulting your caregiver.
  3.  This includes stocking up on specific items because you think they will sell like wild-fire on eBay.  Remember, if you are not a skilled eBay-seller then, you should probably take it one baby step at a time.  Also remember that selling items take research, trips to the post office, and difficulties with unsatisfied customers etc.  Is it really worth the pain?  It may be too much stress for you.
  4. Also consider the pain of dissolving “your business” if something were to happen to you.  My mom had to take time to research the price of guitars, gold jewelry, baseball cards all because my dad developed these “get rich quick visions” and started mass-hoarding things he thought that he could sell.  He had them hidden in his office so we didn’t find out about these items until he was sick.

Consider hiring a daily money manager

  1. Have them challenge each item that you spend money on. They may find things that you forgot about such as if you have magazine subscriptions automatically deducting from your credit card.
  2. Their objective opinion may help matters. Having your spouse manage the finances is one thing, but trying to take financial advice from them? Yeah right!! Sounds like fighting words. Having another objective opinion in your life may help you see the light….

All of these suggestions are seriously as a result of stupid shit that I have done throughout the years.  I only offer up my experience to you as my humble way of saying “watch out”.  I still struggle.  On-line marketing schemes get me every time!  If you have it all under control…Congratulations!  Please share tips if you have experienced some of these things…or if you have success stories!

All my best, Mackenzie