July 25th

Yes, once more time has slipped on by. We are now settled. It has been a long process and we have a few things, such as finding a church home, left to do; however we are finding our niche here. The girls are getting use to us being here and we are enjoying them. I am enjoying being with my daughter. My son is now stationed closer, so we are all near once more. The first weeks, I can't tell you how many times I cried to move back. But our furniture is here now, things are hung, nic nacs are in place and it is home.

Joel (knocking on wood) is doing ok. We ordered him a new walker the other day. This one has a seat so he can sit as he walks. It will not make him as dependent on his power wheelchair for walking around here, such as going to the mailbox. It will also not be as hard to maneuver. The standard aluminum one was such a pain. Not only did it not walk well in grass, but it was hard to fold up. The new one is suppose to fold with the pull of handle. We shall see.

I have other things to share and other posts, so I suppose I will end this one for now..... our journey here has begun! What a great beginning to a new chapter!

Movin' On

It seems that "blogging" is just something I can not keep up with. I can not seem to remember to ply it into my daily schedule. Not that my life is crammed with activity; more like my brain runs on sailboat fuel. Yet, here it is the middle of May. Heather's baby is due next Monday. The complex yardsale will be the following Saturday, grandparents 70th wedding anniversary bash the next Saturday and wah-lah! We are in June and we will be movin' on.

Just since the last post, I have managed to find us a place near my daughter's, get all the paperwork done, pack us up, pull out and price everything for the yardsale, sell our livingroom furniture, get all the utilities set to be cut on and off on their designated dates, AND the truck rented. All of this in the midst of another ER trip for Joel, Dr's appointments, and carrying on daily life with him. Oh, and getting his powerchair. It has been W-I-L-D. The depression I was in has lifted somewhat. I worked my way through it.

I woke Joel up from a nap the other day and he was confused. He was slow getting up, so I took his bloodpressure with out new automatic machine. It takes the pulse too. While the blood pressure was fine, his pulse was 44. Of course, I freaked. Off to the doctor we went. He blamed it on the pain patch. So, we went to the pain doctor. He said that while it would have lowered his pulse, not 20 beats a minute. So, off the the ER we went. They did a complete cardiac workup. Thankfully found nothing, but left us with no answers. The next day we were back in the pain managemnet doctors office. After talking, we realized that Joel had quit his breathing treatments. No, I didn't know this. He is a grown man, I don't go back there and tell him it's time to do this or that. He knows what he is suppose to do. The medication in his treatments acts as a stimulant and has been keeping his heartrate up . We don't know how long his pulse has been this low. Had I not noticed the confusion, I woudln't have taken his blood pressure and found it then. SO, he is back on the treatments and his pulse is up somewhat and his blood pressure is up and down. We go back in a month with the log we are keeping. We may have to see a cardiologist and see about a pacemaker. I'm not looking forward to that.....neither is he. That will be before we move which is good. We are keeping our doctors here. There is too much going on with him to change doctors at this point. Neither of us feel comfortable doing that.

Well, that's my thoughts for today. The dryer buzzer jsut sounded. I need to fix him a snack too.

Oh what a night

Emotions trying to break through the surface...... like a pressure cooker? Not so much anger, as pressure; lack of control with all things going on around. Medications are failing, where they were once a fortress of strength. No one to depend on because everyone depends on you. Carrying a cardboard box waiting for the other shoe to drop. Weeks ago, sleep was abundant, dreams untold. Muddling through, grasping for straws to pull through each day. Tonight sleep clouding from within, the mind won't cut off. Running around doing things, tedious things that mean nothing. Sleep comes, and three hours later, awake. Off again, a rat in a maze. A buzz in the ear that is almost tactile. What more can be taken. Too much dependence for life. A need to slow down, feel control, gather self, bring it all around. Slice.

My students

I have spent the last week reconnecting with my past students. What a blessing it has been! No, not all have been found, but those I have had the privilege to catch up with? Wow! They have grown up, and I feel old. These remarkable Christian young men and women are our future computer engineers and technicians, doctors, nurses, business leaders, writers; wives that will support their husbands so the future households are secure, safe, and happy. I am honored to have taught these great young men and women.

It has also given me a renewed interest in getting my blog updated. Getting my recent quotes from my facebook page and posting them on here; updating sites that are so important to me and my family.

Ringing in 2010

Well, I just said bye to the first decade of this century. Not forty minutes ago, I walked through the door from yet another trip to the emergency room with my husband. This last year has been so rough for him and the last decade has really taken its toll. I think of what we've lost....I have buried my mother, mom, a set of grandparents, and mother and father-in-law. I lost both breast to a silent monster. I have battled the "empty nest" syndrome. I suppose I could sit here in the depression that consumes me during this time of year and end this post with the losses, but I can not. In the past decade, I have seen my two children marry. I have proudly sent a healthy, stout, son into the hands of our Armed Forces. I have been blessed with five beautiful, healthy, vibrant, loud, rambunctious, tumbling, throwing, laughing, running, smiling, grandchildren. I have a beautiful daughter who bought her first house, is in her last year of college, and is one of my best friends.

The days pass and we never seem to notice until we realize a decade has gone by. Year by year flashes across our memories. What will the next decade bring? What will the next year bring? I got two years where God allowed me to touch the lives of incredible children. Then, I learned that a chemical imbalance can steal everything away. My career, life changed, spending every day living for the disorder, but God allowing me to live and teaching me tolerance. He allowed me to live through a brush with breast cancer. He keeps me going each day.

One has to wonder if our world will find peace in such a tumultuous time. At the beginning of this decade, I was not aware of terrorists. I knew they existed, but that was something "someone else" dealt with. Soon after the decade began, terrorists were brought to my full attention. They were on my home soil, in my country. the lives of some incredible children. Then, the years melted into each other as the "War on terror" began, and continues.

In this past decade, I saw first hand what Mother Nature was capable of. Hurricane Katrina hit the Gulf with Hurricane Rita following close behind. I went to offer assistance, only to realize that when Mother Nature strikes, no amount of assistance can calm the aftermath of her fury. I did not take photographs, for the ones in my minds eye are vivid enough for a lifetime. No one should ever have to see their town or city disappear into the Atlantic Ocean. No one should ever have to feel the helplessness of trying to locate a home when the only thing visible are rooftops. No one should willingly answer the call for help; and have to be escorted by the National Guard to the bathroom for her own safety.

This past decade has taken from me and has given to me. There has been pain so deep I thought I would die, times I wished I could. I saw things I wish I had not seen and things I wish I could see again. I lived, cried, laughed, and learned that even when it seems all has come to an end.....the chips are still going to fall where the fall, I'm still going to come out standing tall, when a friend is in need, I will answer the call, but God will be there to catch me.....most of all.

Happy New Year.......................................and God Bless you all this year and this next decade.

December 16th

WOW, I look back over my previous posts and realize just how blessed we are. To think that he has come this far. To "hear" the frustration, remember the fatigue, the unending questions, the burning desire for more details. The fear of not knowing what the next day might bring. And the whole time? God was holding the "The Whole World in His Hands" and that included us. Amazing stuff huh? To think back at how alone I felt, only to now realize that I was never alone. God had me tucked away. Oh, it didn't mean I wouldn't go through the tough times, that we wouldn't have to wait on His timing, that we would have to depend on Him during long nights when pain was unbearable and sleep was not within reach. That we had to realize that He is the great physician and He knows what is best. Yes, the whole time, He had us both tucked away. So, we were never alone. Why does it take something like a life threatening illness to reteach us this simple fact?
So, as you and our family are in full swing of this Christmas season, take a moment to thank God for the birth of His son. For the beginning of everything we are and hope to be. For His precious love, generous grace, and encompassing arms.

December 10, 2009

Wow, how time has flown by! I've done most of my updating on Facebook, and neglected my blog duties. That, and the fact that he is improving by leaps and bounds! We got approved for the Reclast, but it had to be done at the Cancer Institute. While there, we talked to Dr. Bendach about his weight loss and lack of appetite. He gave him Merinal. Essential, it is THC in pill form. SO, he has gained weight! Weight gain has made him stronger. The stronger he has gotten, has given him a will to get up and do something!! :)
Physical Therapy has gotten him up and he is walking very well with his walker. He still depends on his wheelchair for long distances and I think we both know that won't change. He has also come to the conclusion that the bike has to be sold. Whew. That was an answer to prayer. He just had to come to that one by himself. I knew the bike was his life, but I also knew he would never be strong enough or off enough pain medication to ride again.
Rebecca and the girls moved into their new home in November, so October and November kept us busy and running which was good for us both. Their house is beautiful and it is so good to see them all happy and in warm, safe, space!
Thanksgiving this year was truly a time of Thanksgiving. We didn't know throughout the summer and fall if he would be with us on Thanksgiving and he was!! :) With Christmas approaching so fast and the kids due in, in 2 weeks, we are full of anticipation. What I was dreading, is "beginning to look like Christmas."

Monday September 28th

Finally to UAB! We saw a tremendous Dr. by the name of John Rinker. After an exhausting examination, it was ruled out that Joel does not have MS or ALS. That was like a huge weight lifted off our shoulders. What he did diagnose almost knocked me out of the chair. Joel has Parkinson's Disease. It was out of left field. While there is treatment and possibly a cure on the horizon, to see him in pain and to wait for the next appointment is painful to the heart.

He is so upset as am I. His license have expired, and he can't renew his driver's license so he has to get an ID. He wants to get a license, but wearing 50mg of Fentanyl and taking Percocet with a high chance of the Fentanyl having to be raised within the next few weeks, that is not going to happen. I am not him, and I do not know what he is going through, but I do know that I am going through this with him and I know it is a difficult road. We haven't even begun to see the light at the end of the tunnel.

Tuesday September 22nd

Almost a month since I have entered anything. A lot has changed, and yet it seems as if everything is the same. We have been back to Huntsville, and seen our Internal Medicine Dr. in the last 3 weeks. He is not able to process information if you ask questions too fast. It frustrates him. If we are driving, he has to close his eyes because the road is coming at him too fast. These are changes within the last 10 days. He is shuffling his feet and leaning more on the walker. The neuropathy is in his thighs. He woke up one night telling me that he had spilled ice water in the bed; his pants were dry. The muscle pain is moving up his back. I'm glad that we are 5 days from going to Birmingham. I faxed Dr. Rinker a letter today in hopes that he would have the background information before we got there. Hopefully, he will take the time to read it and will pay attention to what is going on. We do not plan on leaving Birmingham without a diagnosis.

Thursday August 28th, 2009

Well, the results came back from the MRI. There are changes that lead to several different diagnosis. The Dr. has referred us to a Neurologist at UAB. We have an appointment on September 28th. What a long way off. However, in the big picture, four weeks isn't going to matter one way or the other. I just hope we can get in sooner. I can call every day to see if there are any cancellations. They are going to be tired of hearing from me!

He is running a low grade fever tonight. 99.6. The nurse heard a little fluid on his lungs today. He has been smoking a good bit. They said not to call unless it is over 100. So, he is taking Advil and going to bed. It is late. He needs a good nights rest. We'll see what tomorrow holds.

WEDNESDAY AUGUST 26th

Well, it is now 3:50. The results are suppose to be in today. The Dr's office closes at 4:00. Ten minutes left to get the results in by today. Now, we have to wait all the rest of today and no telling how long tomorrow. Maybe this is good news? Surely if there was something, the Radiologist would have called the Dr. Right? Isn't that the way it works? So, maybe we are in the clear.....just maybe????? Oh what a load off. A clear scan would be SOOO wonderful, yet, there are still scary unanswered questions. Something is going on....so says two Dr.'s and so says us. The brain has probably been ruled out, that leaves us with diseases. MS, Parkinson's, and ALS are all I've heard them throw out. None of them are anything we want any part of. But who does? Oh please, let this scan be clear and let's get on with these tests!

TUESDAY AUGUST 25th

What a whirlwind day. We had our appointment with the Physciatrist (some kind of new field...Internal Medicine, Physical Therapist, Medical Manager combined) at 11:15 in Huntsville. He immediately ordered an MRI with contrast. That was scheduled for 4:45 here. So, we came back and took a nap, ate roast beef sandwiches from leftovers last night, and then headed over to the Open MRI place. An hour and thirty minutes later we were walking out with a feeling of dread, waiting for another pair of shoes to drop. Just adding to that inventory we already have. How do you pray? "Ok God, if there is something, let it be operable and everything be ok and if there isn't then give the Dr. wisdom to do the right tests to get to the right diagnosis." Ever bargained with God? Believe me, if I had an audience of bargainers, I could be the worlds best auctioneer! "Goin' once for "I'll be in church every Sunday if you'll allow this to happen" on my right" ........... yea, you know what I'm talking about. We've all bargained.........

Friday August 21st

Home health sent out a Dr. to look at him today. She instantly noticed several things, and asked that we refer to a Neurologist. I have had this in the back of my mind. Could something in the brain or of the brain? She mentioned MS, ALS, possibilities of cysts, small tumors, any number of things. He finally realized that yes, his speech has deteriorated. Recall and regular speech is very spaced....yet his frontal lobe speech; the speech we use to talk about feelings such as when he talks about art, or when someone sings, or curses. His speech pattern is, while still somewhat broken, is much better. This lead her to believe that there could be something going on in the posterior or sides of the brain. Now, she is not a Neurologist and let us know that, but she deals with these symptoms all the time, so while I'm not a baker; I can make a wonderful apple cobbler.

We have to get a diagnosis before they can start any real physical therapy. Some diseases do not need extreme physical therapy. It would make the symptoms worse. Others, certain kinds of therapy work best. So for now, we are in a holding pattern. We will get an appointment on Monday and hopefully see this new Dr. within the week.

Our regular Dr. put him on Lasix today. The nurse came by and his legs were so swollen. We keep them elevated, but it seems they just keep swelling. The skin looks like it is trying to split in some areas. I'm keeping lotion on them, but I can't keep up. At least the pain level is down to an 8 right now. He is resting.

Wednesday August 18th

Yes, it has been that long since I have posted anything, and what a wild ride it has been. Our Dr. made it back into town, we have a new Home Health group, we have a pain doctor, and NO the pain is not under control, and we are still not sleeping all night. So, there hasn't been much to report. His mental status as far as depression is beginning to deteriorate. This doesn't surprise me. Pastor came in and had a good talk with him a few days ago. Seemed to help some, but faith; while not a feeling, is hard to hang onto when pain is racking your body 24/7 for so long. One finds it hard to pray through the thick fog. You rely heavily on those who say they are praying for you, to do just that. During times such as this, those prayers are what carry us from day to day.

He started a 25mg pain patch Monday a week ago. We had an appointment for this coming Monday, but after last night, I called today and they are seeing us tomorrow. He was up most of the night and at one point banging his walker releasing anger, frustration, and everything else that was welling up inside. At 3am, he was settling down having been able to eat a small bowl of cereal and sit on ice packs. His bed was hardly used. He spent most of the night in his recliner, something he has not done since he got his bed.

We didn't go to Nashville yesterday for our 6 week checkup. We called and rescheduled. He couldn't make that trip, it was coming a monsoon, and we didn't have the xray results that had been ordered by the pain specialist nor do we had the bone density test, which is tomorrow. So, the trip up there would have been useless. We are going the first week of September. I dread it already as I know he does, but it is one of those necessary evils, and I am going to ask him point blank, "Where are we going to be 6 months from now?" "Where is he going from here?" "Is this going to be his life?"

Just tell us, you know? We can prepare for something we see and we know. You can't prepare for something that blindsides you every week, or every other day. You can't sit around waiting for the other shoe to drop, which is how we are living. Tell us, so we can get a handle on it and get on with our lives.

Well, that is all there is for now. I will try to post when we come home from the Dr.'s tomorrow. We will have the xray results tomorrow also. That should tell us if the hardware put in during this last surgery is holding.

July 27th Monday

The beginning of a new week! We're hopeful that this week will bring less pain, more cooperation from the left leg, more communication from the Dr. in Nashville with Home Health here....... we just want a really good week!
We got the wheelchair yesterday. I got a really good deal. I had to clean it up some, but it was worth it. We strolled down the sidewalk and back. The cracks on the sidewalk hurt him, but I think it was worth it to him!!! He hasn't been feeling well the past few days. Just a general.."I don't feel good." It could possibly be that the pain is just getting to him. I know it would me. He has stated several times that the meds were not working.

The nurse just left. She has a call in to Nashville to try and get him something stronger. She said that we have got to get the pain level down so he will start eating more and feel like getting up more and/or his body not punishing him for getting up when he tries to walk. Here's to the beginning of the week!

July 24th Friday

We have our intake evaluations done for OT and PT. He is in a great deal of pain. Eaten very little....since breakfast. This is when I wish they could see him, see the pain, see him moving and how hard it is.
Karen Burnette was so good to come over and give him a haircut, I know it made him feel better. It looks great. I shaved him as well.
We called about a wheelchair. Hopefully, we will have one tomorrow. I know he wants to get out and get some fresh air. I know it will do him good.

July 22nd Wednesday

We took off to Nashville in a "rush" to see the Dr. He wanted to know why the pain was so bad. We found out today that during the second surgery, he took out previously placed hardware and had to put in pins instead of screws and a lighter plate because of the density level in his bones. The Dr. said today, "I'm just hoping everything will hold together until you heal." As of today, the pain level not dropping below an 8, we're not thinking it has held. Scary. His legs hurt constantly. Frustration seems to abound for us both!

We are exhausted.....goodnight.

Joel 21st cont.

Home Health made it today. They did the intake evaluation and even got the physical therapist here to do her intake. He seems to be in better spirits today. I know I am. It's the road to recovery. Physical therapy will be coming in to work with his legs, Occupational therapy will be coming to work with his arms. Then there is a nurse who will come to take care of his medical needs. He will be getting a bed with an air mattress that will alleviate his skin from any further soreness and breakdown. There is a small infection in the incision on the front. I assumed, which I should know better......... that if the little strips were in place, everything was fine. This is not the case. They are also going to do something about the pain, so he will feel like eating. We are getting a wheel chair so that I can get him out of this house. He wants out as much as I do. It will be nice for the two of us to go to the mailbox. It's amazing what you take for granted.

From all we learned today, I should have called them when we got home. He and I, just thought we could go it alone. Live and learn. I won't do it again. If he is ever hospitalized again for something major, we will come home with home health. Anyway, thank you all for your calls, visits, prayers.............. you don't know how much it has meant to us both. With the long road ahead, it's nice to know that around the bend, at least the light is at the tunnels end.

Joel July 21st

Home Health arrived this morning, and it was like a breath of fresh air. He is so thankful, as am I. I was in over my head........way over my head. Going out of state to have surgery does indeed have it's complications. If you need help upon leaving the hospital, they can't do anything about it. Home Heath agencies, I just discovered, can't take orders from out of state....or maybe that was just on pain medicine. Regardless, it's a mute point.

He is going to get physical and occupational therapy. There will also be an aide that will come and sit with him so that I can go to the grocery store and run errands. There is such a burden that has been lifted. This is going to make him better. He will be back on his feet in no time!

Joel July 20th

Well, it's been a week since we've been home. He has lost 12 pounds. He hardly eats, can't control the pain, can't rest, ARGH. Things are not going well and I'm worried as anyone would be. I called Traci this morning at our Dr.'s office. Home Health is going to come in. I'm so thankful. He needs to have someone look over his skin to make sure it isn't breaking down. I have some questionable areas. He can't walk without the walker, and with that it is so painful he can barely make it across the hall to the bathroom. I took down the bed in the 2nd guest bedroom and put his recliner in there so he would be close to his bathroom. He doesn't look good to me. I'm hoping they can do something for the pain so he will eat and get stronger. I can't wait until they get here. It's like a huge boulder off my shoulders just to know they are coming. I don't know how much I have cried, just seeing and hearing him in pain. It doesn't break the heart....it rips it apart. I am one person....... how did I think I was going to do this by myself?