Life On Permanent Vacation

What's supposed to be wrong with you? So only one person in your house actually works for their money? It's a great system if you know how to use it. Must be nice, living life on permanent vacation. These are few examples of questions and statements that stick out clearly in my memory. There have been many others, but more commonly we see the "signifigant looks" and eye rolls between people who are not brave or rude enough to voice these ideas themselves.

If you're squeamish or extremely sensitive, you may just want to pack it in now and skip this one, because I'm gonna lay a lot of it out there... I want to be sensitive to my family, but, I'm also feeling very defensive about our situation, so I'll try to find ways to tell our story without too much embarrassment to those I love.

My dad is on Social Secuirty because he is retired. He is 91 years old, worked hard his entire life and retired in 1984. Nothing special, just a regular guy doing the regular thing. He has, as you might imagine, several health issues that are normal for someone his age. He had 5 bypasses in 1992, so yes, there are some heart problems. He has been in kidney failure for most of the last 3 years, so he has a catheter that we maintain daily and once a month a homecare nurse comes out to change the main line and give him an antibiotic shot, so ok, his check is cleared up.

My husband Bill will be 55 this year. In 1986 he was hit by a car and had severe injuries. Some of them include a large part of his scalp being ripped off, a concussion, one leg had 21 hairline fractures, 3 major breaks and the loss of 40% of the skin on the shin & calf areas. He had 5 surgeries and several skin grafts to put it all back together and has rods, plates and screws that will stay in forever. He was in the hospital for 4 1/2 weeks, all of which was actually a blessing because I was told they originally thought he wouldn't live long enough for us to see him by the time we drove from Streamwood to Elmhurst Memorial Hospital. His recovery and therapy took just under a year and was unbelievably painful at times, but, he's Bill. He doesn't fight, argue, wine or complain, he just does what needs to be done to carry on, and he did, returning to work about 10 months after the accident. 3 years later he started acting quite strange, his walking & balance deteriorated and he literally started getting lost doing what had been normal things up until then. After much testing he was diagnosed with Multiple Sclerosis. At first we were devastated by the news, we has 2 toddlers, he had just been thru the whole accident thing, I was having health problems, it was all very overwhelming, but, he's Bill. No whining, just carry on, which he again did. Until February 1991. (let me just say that Feb seems to be a tough month in our family for some reason) At the age of 27 I had grown a huge mass in my uterus and after several failed treatments, I had a hysterectomy in January that year. My first week back to work Bill woke me up on a Saturday morning about 6:30am and said I think something is wrong. He woke up with severe pain in his shoulder & arm and some tingling. We thought it was some weird MS thing and I put in a call to the neurologist. She told us to call 911, but we lived about a block from a treatment center so we just went there. The next thing I knew Bill was being transported by ambulance to the main hospital in the middle of a "devastating heart attack" which left 40% of his heart damaged. Turns out he had a small defect, probably from birth, that no one ever knew about. He coded twice in the coronary care unit, had an emergency placement of an external pacemaker done in his room while his sister and I watched thru the window. No whining again, but that was it for working. Between the damage from the accident, the MS and the heart damage, the doctors said he was done being able to work, and he was. Bill's MS has progressed to the point where he can't always walk across the living room, showers have to be carefully scheduled because they wear him out so badly it's hard for him to get back to our room and he very rarely joins us when we do go out somewhere. He walks with a cane, but was evaluated at Marion Joy and we are in the process of getting him a rollator walker. He would actually qualify for a scooter but there were many more problems with that idea than solutions, so we've shelved it for now. So ok, that explains his check.

My son started out with a rough pregnancy and things got more difficult from there. When I was 4 1/2 months along with him I was working in a grocery store bakery. I had been pretty sick and worn out with this pregnancy, which was the polar opposite of my first pregnancy with my daughter. While working one day I started to feel out of it, kind of dizzy & disconnected. Two of my coworkers came to me and said Listen to us, we need to go up to the break room, you're bleeding. Didn't even realize that I had bled enough for there to be blood on my shoes. An ambulance was called, I was taken to ABMC and then transferred by ambulance to what was at the time Humana, where there was a high risk ob waiting for me. I had bled a lot, but the pregnancy still appeared viable, we'd know for sure within 48 hours. It was. Went home and went to bed for the next 4 months to keep from losing him. When I finally went into labor we all were hugely relieved, we had made it, then the delivery got hard. As he was coming out, he was blue. The cord was wrapped around his neck. With no time to waste the doc pushed back as far as she could, then reached in with both arms and got it off. (I got 32 stitches to remind of that moment!) Once born, he did well, was very strong and home in 3 days. He was a difficult baby, harly wanted to eat, never slept and very hard to soothe. As he got older his development, behavior and lack of social skills were exhausting for us to deal with. When he was 4 he was diagnosed with severe ADHD. By 7 he was diagnosed with Tourette's Syndrome, by 8 we added OCD. Throughout later years we were told he was "on the cusp" for a dx of Autism, that he is emotionally many years behind the norm, he was genetically tested for giantism but in spite of his unusually large joints he did not have that, he does however have arthritis in his hands, back and knees. He also got the gift of NF2 from me. BJ had services and resources from pre-school on. He went to special ed pre-school, was in a regular classroom but pulled out for help until 2nd grade, then went into spec ed full time. By 5th grade he was in a Theraputic Day School and stayed in those until he graduated. He has many physical limitations, but the largest problems are definitely the Tourette's & the OCD. He has numerous problems with empathy, adjusting to change and socialization. The worst part of it all is that he is brilliant. Sounds crude, but I always say it would be so much easier if he was not as smart, give him something shiny and all would be well, but one of the hardest things we deal with is tha fact that he is intelligent enough to know everything that is different about him. He hurts so badly because he knows that things are wrong, but can't do much about it. All he wants is what most of us want, freinds and maybe a home & family of his own one day. I believe that is possible if he can meet someone who can see thru the issues to my awesome son's core. So ok, check number 3 explained.

We had always planned on me being a stay at home mom. I worked odd jobs, part time now & then when we were trying to accomplish something specific, but very few & far between. Then we had to finally accept the fact that Bill could not work anymore, so I would. Started out part time, went full time, and had a job/career that I was good at and LOVED for 10 years. But that was BT (before tumor). A few years BT I was dx'd with diabetes, it took a while but we got it under control between diet and meds. Not long after that I started having chronic headaches and my eyes got bad and I had to get glasses, but we all wrote it off to not only being diabetic, but I had an injury to my neck from a fall so that could be the cause of the headaches. One morning I woke up with a thread on my eye, at least that's what it looked like. like a thin black thread rolled into a loose ball, except I couldn't get it off or out of my eye. I got concened when I realized that I could still see it when I closed my eye. Went to the doc, got a ct scan and when it was over they asked me to stay in the waiting room. A few minutes later they asked me to come back in and talk to my doctor who was on the phone. She talked me thru while they showed me the films of the tumor in my sinus cavity and another tumor in my brain. I was admitted for more testing and in April 1992 I had sinus surgery to remove that tumor and rebuild the wall of my nose that it had crushed. In May I had brain surgery to remove what turned out to be a golfball sized A-typical Meningioma brain tumor. The fun was just beginning... I was off work for 90 days to recover from the surgery and do some physical therapy. I went back to work, but things seemed off, everything took longer and seemed harder. I made a lot of mistakes and missed a lot of work with head pain. I muddled thru for about a year. In August 1993 I was feeling extremely bad so we moved my scheduled MRI up a month and sure enough, the tumor was back to grape size. They couldn't remove 100% of it because it was located on a main vein in the brain. (say that 3 times fast!) So after consulting with a doc down at Northwest in Chicago and another doc at ABMC, it was decided that I would do 6 weeks of daily radiation at ABMC. That's when things started going downhill. I worked thru the first few weeks, going at 8:00 for treatment, then into the office by 9:00, but it was really wearing me down and I ended up taking a leave until the end of the year to finish treatment and recover. I went back to work in January and nothing was ok. I was in increasing pain and msitakes doesn't even come close to what was happening. I would read things 3, 5, 10 times and still not be able to understand it, and I retained almost nothing new. I would type a memo and realize whole words or sentences were wrong or missing. I couldn't do even simple math in my head and I was constantly confused. Apparently the scar tissue from the surgery and the radiation had caused some damage, thus the mental issues and some of the damage was to the dura, the lining of the brain, thus the pain. In February 1994 I gave in to what the docs had been saying for a year, I shouldn't be working or driving anymore. Shortly after that the seizures started. So here I am. My only real bitterness about the tumor is that I don't retain new stuff until it's been done so long and so much that I eventually absorb it, but this really killed off my love of reading. I used to read 3 - 5 books every week. Now, if I'm lucky I finish one every two weeks. I have to keep going back and rereading over and over until I absorb enough to finish the book and that just pisses me off. And within a day or two, I can't tell you any details of it. On the bright side, I'm a cheap date because I don't remember movies or TV shows either so we can watch the same old movies several times until it clicks that I have actually seen it before. So ok, check number 4 explained.

So if you're idea of good living includes:
living on about 55% of your income but still having 100% of the expenses, plus medical bills
not being able to run to the gas station for milk because you don't drive
scheduling all errands and appointments to fit in the few hours between your daughters two jobs
screwing up the checkbook several times a month, sometimes several times a week
having people think you're a drunk because of the balance problems
not being able to keep up with housework but can't afford to hire any help
having people call you rude because you can't process quickly enough and they think you're a bitch
and taking 23 pills a day that make you spend hours in the bathroom EVERY SINGLE morning

then I say go for it! Throw yourself down some stairs and join us on "permanent vacation"!!

Praise for Today: Somehow thru all of this God has kept us together and in our home. Thank You Lord!

Praying you're Happy & Healthy until we meet again,
Auntie Sue

Welcome to Auntie Sue's World, otherwise known as a peek into my strange and individual head...

Who:
Sue Klasen, Evangelical Christian wife and mother of two grown children, a daughter who is a tattoo artist and a son who is brilliant and an adult disabled child due to Tourette's Syndrome, OCD and ADHD. Married to a wonderful, patient husband of 26 years, who also happens to have Multiple Sclerosis. Daughter to a 91 year old adorable dad, who lives with us.
Aunt to many wonderful people, some by marriage, some by informal adoption.
Living with a non-malignant brain tumor and the many effects of brain surgery, radiation treatment and 12 medications equaling 23 pills per day. Adopted at birth by the most wonderful parents a kid could hope for.
Definite pet lover, in our home we currently have two dogs, a snake, two rats and a hedgehog. (but that could change at any time!)

What:
A place to clear my head. There is a chance that no one outside of my family will read this, and I'm fine with that. Like so many, I'm a Facebook junkie but often have too many words & thoughts to fit in the little box. 
I don't have a theme, because like most people, there are SO many themes in my life that I couldn't pick just one. Because I am not always capable of reading or especially writing well, my kids will read thru posts and make any needed corrections they notice before I publish it, BUT, I am talking about spelling & such, NEVER about my opinions!

When:
Whenever. Not sure if this will be a weekly, monthly, hourly thing. Just don't know. There are days when I am feeling better and write a bunch of notes & ideas and then don't think about it again for days or weeks. There are also days when I make tons of notes only to look at them the next day and realize I can't even read them all let alone figure out the point I was trying to make... like I said, whenever.

Where:
Site is auntiesuesworld.blogspot.com
As for atually posting...probably in my bed...
but, we live in an 78 year old home in Elgin, Illinois (for now).

Why:
Because I have to. There is too much clutter in my head & some of it needs to get out of my head and into yours! (insert evil giggle here!) I'm sure that some things I post will be offensive to some people, if not, then I'm probably not being honest enough. We are all different and have had different experiences so there will always be different opinions. If you think I'm wrong, please, feel free to let me know. I am always willing to listen to different ideas & opinions, but I warn you, do your homework, I will ask questions!!

I have been thinking about doing this for several years, but always put it off because of fear. Fear of not being able to keep up with it. Fear of posting something really stupid on a bad brain day. Fear of offending or hurting people I care about. Fear of thinking of an idea and posting it before I realize I already hit that subject. Lots & lots of fear. But thanks to my kids, who always end up helping me along the way and to Chris & Paula, who did a great job getting their sites up, which inspired me, I'm going to give it a shot.

Auntie Sue's Prayer of the Day- Father God, there are so many people I know going thru so many hard and stressful situations. I pray that you will always show Yourself clearly and that we may all recognize Your will and follow it. In the name of Jesus I pray this. Amen.

Praise of the Day- Thank You Lord for getting my nephew to Texas safely. I thank You for giving him the faith and strength to follow Your plans for him. Amen.

Wishing you a Happy & Healthy time until we get together again,
Auntie Sue