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Susie's musings

I now will need rehabbing

We met with the neurologist in his den and he did what I wanted… the neurologist has cut Chuck’s seizure meds in half… how’s that for getting exactly what I wanted? … What fun it will be to have Chuck not so sleepy or anxious. He drove the last two days and he is driving a little fast. "Oh," you say, "why doesn’t Sue do something about that?" Have you ever seen a 100 pound woman holding a full grown Saint Bernard on a leash? You know darn well when he wants to go, he’s going. Chuck has driven to rehab and back. It’s about 2 miles on 107 Avenue to Kendall drive. Straight shot, but this is Miami where aggression is top of the line, and the speed limit is only 40. So more prayer please for our boy who is off to OT while I stay home and wait for someone who is coming by to get paid for a job he did for us. Chuck really likes OT. He doesn’t have his handwriting back yet, and they are playing mental agility games with him. Keeping it light. meanwhile… the shoulder hurts like… well think of your worst hurt. He was really groaning with pain so I managed to get 600mg Ibuprophen into him at great protest (It’s what the doctor ordered and neurologist says OK). Chuck is the man who doesn’t take medicine. The shoulder doctor said 800mg three times a day… I barely got 600mg in once. Actually the next time I asked, and I don’t ask often, the shoulder felt better.

OK so what about me? I have changed roles from Mother dog protecting her man in the hospital system… and I have become the PT (Physical Therapy) mother dog. He has to work that shoulder twice a day at least… and I feel bad when it hurts, but the alternative is manipulation by the doctor under anesthesia… NO WAY. When do I get rehabbed? Soon, I know. Happy hopefully warm day, Love Sue

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Susie's musings

normal again thank God we are normal

I can’t sing enough today…. "Thank God! Chuck’s shoulder is normal! Thank God." The shoulder pain has been awful and still is… and when he groans I come running…. "Are you OK?" I swear I am so glad men don’t have babies as their shouting and groaning would be heard around the world….
Chuck had an MRI for a possible tear in the tendons or rotator cuff etc etc. I use such non-clinical words. The MRI report is loaded up with "need to look these words up in the dictionary…" but the bottom line is the shoulder is normal for a man his age…. mild bursitis, mild arthritis, a bump on the top of the shoulder … I got a sheet full of indications, findings and impressions and there is one sentence the neuro surgeon circled: Prominent capsulitis particularly along the anterior and posterior inferior capsule of glenohumeral ligament…. could be adhesive." Go figure! At least two big words to look up in that sentence. It happens often after neck, back, and head surgery. I think the Operating room people tie the patient down to hold him still and then Chuck might have jerked or had a seizure and the shoulder didn’t move…. The MRI uses the words "moderate" and "mild" for all the 63 year old man things going on with the shoulder. The bottom line is it can be rehabbed. The doctor, a big, nice guy, did promise if Chuck doesn’t rehab the shoulder and fight through the pain to rehab the shoulder, the doctor can go in and manipulate it in surgery and break through the scar tissue. No!!!!! if we never see the inside of an ER, OR, and Recovery room again that will be the best. I personally will stand on his back and pull at that shoulder – I hope I don’t have to do that. Chuck is out walking with Dave and swinging his arm. I am making blueberry pancakes. All is well. Tomorrow we see the neurosurgeon and work to get the Kepra (seizure medicine) decreased so Chuck can take motrin to lower shoulder pain. That’s OK we can deal with that. Have a wonderful day and stay warm my northern friends.

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Susie's musings

Normal!

Dear Saturday sunny day friends. I cannot believe I failed to give you the news on Chuck’s normal CT scan. We were so elated when we left the neurosurgeon’s office and I didn’t write!!! On Jan 10 we had a CT scan that was reviewed with us at neurosurgeon’s office January 18. How do these words sound? "No intra or extra axial fluid… no intra parenchymal hemorrhage… no mass effect or midline shift… ventricles are age appropriate… basilar cisterns are normal in appearance… posterior fossa normal… old bilateral small lacunar infarcts of bilateral thalami less than 1.0 cm in size… "

I had to look up half the words on the report but the one that jumps off the page is normal. The physician’s assistant gave Chuck some tests and said he is "more than 4 out of 5" on the testing. The PT guy is working him hard and it seems the shoulder is the main concern (we had an MRI of the shoulder and await result on the rotator cuff injury). We will meet with neurologist on Wednesday morning to make a plan to "wean" Chuck off the seizure meds. I’ve spoken to many people on seizure medication who say they are sleepy and foggy and they wish they could just stop the meds, but the alternative is not good either. I will be obedient but pray and "lobby" for removal. Our Chuck is ready to be done with this. God bless him and God bless you for praying for him! Love and have a wonderful weekend. Susie

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Susie's musings

It’s not just about letting go…

Dear friends. I’m thinking of a second book, and I’m doing some free writing whenever it comes to me and here are two pieces written after I waved goodbye to Chuck in the car headed for the Keys with Perry and Heather:

There is going to come a time when the patient suddenly "pops" and tells you to "get off his case," "give him some space," "quit grilling him," "_____" you will fill in the blank when he says it to you. You have heard of the straw that broke the camel’s back; well, you’ll be the one to catch it when you ask too many times, "how are you feeling?" "What would you like to drink, milk or water?" "Do you feel dizzy?" He’s at the point where he wants to run, drive, go back to work, cook, "______" you fill in the blank when you hear it because you will know it when you hear it. You will know when you have to let go. He doesn’t really know it when he says it that it hurts. He doesn’t realize what you have done for him. All he knows is you are his full time keeper; watching, listening, doling out pills, making appointments, screening phone calls, and, as is the case in my husband’s recovery, messing up the check book.

He doesn’t understand that you almost lost your mind too with worry and fear and with sleep deprivation. He can’t thank you for your worry, your fear, your prayers, and your patience. He doesn’t understand that you’ve given all and almost lost everything. He doesn’t know his own fear (he being the fearless one and the protector); he is grieving the loss of skills that he hasn’t even identified yet. He doesn’t know that he’s drained and that he needs space to heal, reflect, and to reconnect with his new self.

After Chuck said to stop grilling him, and after one more sleepless night for both of us, I was driving Chuck to a 9AM PT and I was actively wondering who is more impaired and should not be driving, him or me? His brain on 1000mg Kepra is probably working better than mine on weak coffee with milk. I’m trying to cut back on morning caffeine so I can nap. To no avail. I can’t nap and I’m still having trouble falling asleep at all. I call this condition, "the fruit of the beast."

Our PT place is loaded with people Chuck knows. Friday at PT, I watched Chuck as he bounced on a trampoline talking to an old associate. For those from the law firm, remember Dr. Fogarty an accident reconstruction expert? He and Chuck were both rehabbing and they were talking about old cases. Chuck once drove a truck on the Keys highway with lug nuts unscrewed to see if the tire would come off. Dr Fogarty sat in the cab with Chuck waiting to see what speed the truck might have been traveling when the tire came off. Dr Fogarty was also in on the great caper to see how soon they would see a giant boulder in the middle of a berm in Plantation that a guy drove into claiming he couldn’t see it. What fearless young men they used to be. I sat there musing and watching two somewhat stiff older men exchanging lively "remember whens" and I realized, "he’s coming back." After relating his brain injury "event," Chuck told Fogarty, "I just have a little rotator cuff injury." Chuck also chatted with an FHP trooper who is rehabbing too. Chuck updated him on a death of the troopers’ friend that occurred while Chuck was in rehab. I wasn’t sure Chuck would remember that, but he does. They exchanged old fond memories as if this were an exercise class; two paunchy men being iced down for injuries after rehab.

I think he’s back. We have an appointment with a specialist for the rotator cuff injury and then an appointment with the neurologist where I will start campaigning to reduce the seizure medication. He’s certainly ready. This weekend will tell the tale: I pushed Chuck out of the nest last night with Perry driving and Heather and the kids in the back seat, Chuck headed for a weekend in the Keys without me. He called from Duck Key and they were all singing and laughing. I could hear the tiredness in his voice. I pray he slept. I pray he remembers to take his pills that I assembled in two daily pill containers (morning and evening) and I handed him into the hands of God, our Blessed mother, and the angels. Extra angels please. For just a little while more. Love Susie

ps: Draft piece: From Grieving to Recovery:
Today I will take two ribbons and hang them on a cork board. I choose red and pink ribbons. These ribbons hang on the cork board and they remind me to see color today. I will see the colors red and pink. Tomorrow is another day, and yesterday is past. Today I will see red and pink. I won’t try to do more. Choose two colors. Red, pink, orange, blue, green, yellow, black, brown. It doesn’t have to be ribbons. Rip colors out of magazine ads you find in doctors’ waiting rooms. Tack those two colors up and look for them. See the color today. That’s all. That’s enough for one day.

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Susie's musings

Under the palms

Dear friends and family.  While it is snowing in 49 states (even Hawaii has snow) I am sitting under palms on a breezy morning. A sweatshirt protects me and the palms keep the sun out of my eyes.  Chuck ran a little this morning over a 3.2 mile course.  I think it is time to let the reins I have on him loosen up.  Next doctor visit I will take the latest CT scan, pray it is normal normal and ask for the Kepra to be reduced.  Of all the books I read, the seizure meds are the one thing that seem to hold back the patient from recovery.  I bought a new blood pressure kit with about 6 parts, and he put it together.  B/P is 120 over 80…   He’s only on two meds, seizure and a low dose of cholesterol med (like Zocor). Had a blood test and we await the results for the doctor to cut out the zocor.  We have to rehab the shoulder. As you know those of you who have had any kind of surgery that requires rehab, I’ll bet some could recite damages to unaffiliated limbs. Like hip surgery and you get a shoulder injury. The rehab people are trying to strengthen all the areas of the body.  If I went into rehab, my shouders and knees would be in such agony!  Couch potato personified.  One day I’ll start exercising. First I have to beat up the dust bunnies and the weeds.  My lovely yard has not been mowed or weeded since early November.   The weeds have flowers, but that is not good!!!   Thank you for your prayers. I am sleeping at night, and Chuck is feeling pretty good. All seems to be on the upturn.  Love Susie

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Susie's musings

Too much noise?

I am celebrating today and telling everyone! Chuck balanced the check book this morning. It all started when he went into the hospital and I "checked" 2 bank statements. Checked off everything on the statement and matched the checkmarks with the check book. "OK," I said when my final number was about $600 lower than the bank said we had, "What is ‘balancing’ and how do we do it?" I didn’t address this with Chuck until yesterday afternoon and he looked at my check marks and all the checks and papers, and he said, "I can’t do this, too much noise." You know how you take a remark like this "in" and you feel your belly squirm and your mouth make a funny smudge, and you think, "he can’t balance the check book. Yikes." So feeling it was too soon (9 weeks) after surgery, I left the papers and we moved on to dinner. My friend Karen suggested gently that the "noise" is me: "in his face with the rehab and care giving" and well, maybe, just a little! The books I’m reading show that some things don’t come back for years…. and maybe never. But every time, I worry, but I realize I can’t push him. This morning, when I finally rolled out of bed at 8:30, Chuck said, "I balanced the check book, let me show you what you missed." Sure enough there was a deposit in the exact amount of the unbalance. Add in the deposit and whammo! balance. The finer points, I don’t know because this has always been Chuck’s job. Like yard work and the Christmas letter and cards are my job. Decorating the inside of the house, my job. Decorating the outside of the house, keeping the sheds in order, car maintenance, his job. etc etc. So I guess dear readers, my advice for today is two-fold. Don’t worry! There will be small victories coming when you are care giving. Just wait. And learn now how to do those things that are his job or her job. Just in case. Happy Baptism of Jesus day and … God bless you. Love Susie

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Susie's musings

Chuck and George

 Do you remember Tool Time with Tim Allen? You never saw the neighbor, Wilson, just his forehead… Anyhow (see below) Chuck and neighbor George talk over the fence except Chuck has to stand on a ladder leaned against our side of the fence…. George will be helping us to build our dock and I’ll probably rope him in to some other projects like fixing our back door that really has never worked. Happy weekend to all, and may your home projects be fun! Love Susie

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Westwood Lake

Chuck and George at the fence

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Susie's musings

Papers aren’t filed yet!

Hi dear friends and family. We have accomplished many things this week! Chuck walks every day, he receives physical therapy on his shoulder, he went to the dentist and got a good report (with not flossing – I was concerned), and he gave blood this morning for our blood thirsty trusty general practice doctor who wants to be sure all systems are "go." I’m telling you the Peabody/Goethe genes are hardy! I I don’t floss I bleed and then the dentist yells at me. Chuck is amazing. FYI if you know anyone who has trouble with the little flossing thread, use the stick with built in floss…

On the weekend we have nothing but walking and resting. He has passed all my little tests (I write questions and have him answer them in writing, and I also have him connect numbers that I’ve written all over the page). His handwriting is a little off, and his signature looks like it did in the Navy! He knows everything and all he has to get back is the high level cerebral things like decision making, organizing, taking notes… maybe these are things I’m good at and he never did…. Last night when I asked him if he wanted a glass of water or milk, he snarled, and I said, "Honey you should answer, ‘yes sweetie I would like a glass of milk,’ and he said, "I never said that before!!!" and I just laughed. I think the brain shoves the high level analytical and social stuff to the back burner in order to use all resources to survive and then recover physically. Scary as all get out isn’t it? but the good part is most brain injury patients are able to recover. I remember I went crashing out of ICU and into the arms of a "social worker" who makes people sign in and gives out pillows and blankets to families… and she just gave me kleenex and told me "most people recover, and he’s strong." She probably says that to everyone, and so I turned and said it to God. Thank you for staying in touch. You can talk with Chuck on his cell. He’s good. Love Sue

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Susie's musings

Singing and dancing…

Because the Lord is good to us!!! Yesterday I was working on organizing a pile of papers in the art room. I pay bills on the computer and drop the completed bill with notes that I paid on the floor behind me to wait for filing. There is also a stack of papers that I accumulated since the entrance into the ER… So there I was on the floor organizing and this came into my mind, "The Lord is my Shepherd and there is nothing I shall want." I was overwhelmed by that whisper. What does the Lord want me to do? Imagine the shepherd lad guiding his flock of sheep: He finds a sweet spot of soft grass and he curls up to sleep while his trusty sheep dog guards the sheep. He is content and happy because he knows he and his sheep are protected. He hums a tune praising his God. We too have sheep to watch, but when we get anxious and tired (me), why not turn them over to an angel and trust God to guard everything. If bad things happen, trust in the Lord to work his plan. Trust, do not worry… Let the Lord lead you beside still waters and restore your soul… Fear no evil for God has promised to take care of us. Anointed with oil, full of blessings, dwell in the house of the Lord with goodness and mercy. WOW! I never really FELT the 23rd Psalm. Now I am feeling it. It is my shield and my mantra.

Chuck is getting better! Today he finished a free cell (card game on the computer) that he started 2 weeks ago and couldn’t finish. He got up this morning and made coffee and came to wake me up with coffee in hand and told me I had 18 minutes to get to church. He was watching his watch and giving me time updates… "Time to put clothes on and get out". He started the car and handed me my purse with a book to read and my "schedule of activities I had planned for this morning". I’d say the old Chuck is very near…

Sleep deprivation is devastating. It is the gift given to the care giver that as often as we are weary and sleepy and wanting to "smack" our sick one, we don’t smack them and we don’t have a bad accident…. (recite the Psalm or other prayer here). I shepherd us off to bed before 9pm and I give strict orders to stay in bed until 7am. And then he’s restless because his shoulder is aching ( I go get an ibuprophen). Then some time in the night I have to go find him (usually sitting watching TV and sipping coffee he makes at all hours) and I put him back in bed…. he wakes up and then is so sleepy but needs to be told to go to bed…) I think when he is tired is the hardest time. Although during the day he’ll take himself in for a nap and often sleeps 1 1/2 to 2 hours. But he’s able to do some things like he’s starting to conduct business and he makes Dave walk every day!!! Even took himself out to walk alone in the Keys. Well darlings I have to go file those papers. God bless us all and receive our thanks!!! Love Sue