Black Clouds…..

Have you ever felt like a black cloud is following you around? I think I picked up a small one from this crazy storm that is currently whipping the east coast. We have been lucky to get only cloudy, cold and windy weather.

Back to my latest friend, black cloud. Over the weekend, a health issue got so bad I ended up at the doctor Monday morning, which is leading to more meds and more tests.

While at an an appointment this morning, the doctor did not like my vital signs  (pulse was 39) and insisted hubby-poo contact our cardiologist. They proceeded to tell him to get me to an ER now. Off we go……..Eight hours later and another medication increase, I got my sweet hubby out of a frightening place for him and home safely. He was so strong for me this past week, I try my best to return the favor.

The hospital took so long this afternoon I could tell he was wearing out and getting nervous. My job was to get him out of his first stop after the stroke ASAP!

I have such a wonderful husband, since the stroke we have had our ups and downs, but we always come out smiling. He is struggling with learning to accept the “new him”. He gets a little stronger every week. I’m so proud of his progress.

Ok, it’s 4am and I am hurting so bad……

I am kinda lost as to what is going on right now, but I am discovering misery this fine morning. I can’t wait until a decent hour rolls around so that I can ruin a doctors weekend. I have tried everything from drugs to ice to a heating pad and can still not lay down.

Men out there, be glad you do not have to deal with female body parts when they are not functioning properly (I am not talking about what all of your minds went to). I would not discuss such on a blog. Although I can say I wouldn’t want to deal with pain in male body parts either. I am positive there are pains out there I can never understand or want to. I can be extremely sympathetic.

All of you that are out there sound asleep in la la land, grab a little snooze for me. I’m sure about 1am, I’ll be nodding off. Hope everyone had a wonderful night of rest! Please save a little for me………

One amazing little kid

It was so nice to hear my sister with a little cheer in her voice. Not that she is never cheery, but this day she was beaming with pride. She has 2 incredible boys. One 14 yrs. old and one 6 years old. Both of my sisters have done great jobs in the kid department. But at the moment, Aunt Jill is bragging on the first-grader. My sis had a meeting with his teacher and apparently he has met all requirements for first grade and she is giving him things to challenge him while at school. He loves to read and computers. I’ve got to come up with a great challenging gift for Christmas. Any suggestions?

Colonoscopy Day

Up early to drink the rest of my goo four hours before the procedure. Goo is down and now I’m just waiting. I have to get ready, but I’d like to let Barry to sleep a little longer. We need to leave by 7:30am. I hope the PET Scan is just a scare. I’m a little terrified of what the good doctor is going to find, but it’s in God’s hands and I need to quit worrying. I should not be afraid. I need to relax. With Cowden’s Syndrome the unknown can really un-nerve you.

My mom lost her cornbread

Just when life is feeling good around the house, my mother hit me with this last night. She had actually made a loaf of cornbread and misplaced it. It was actually on the counter right in front of her. She actually went to the trouble to make a second loaf. She now has enough cornbread to feed the neighborhood. I can’t help out, I can no longer swallow cornbread without choking. Barry is watching his waist-line. He is thinner than he’s been in years and is watching what he eats. Cornbread will not be kind to your waist-line. His answer to mom’s dilemma is “I hope she’s hungry”. No help at all.

Since his stroke, Barry went from a serious all business kinda guy to one that you can never tell what will come out of his mouth. He can be hilarious and then there are times when I just have to look at him and say “huh?” He’s so cute. Between the three of us, life can be interesting around here.

What do you tell your mother when she asks “what is wrong with me? I can’t keep up with anything.” All of my answers involve a physician and the possibility of more medication, both of which she hates. So………………………..What do you do?

My Mother and my husband……..what do I do with them?

While I am off getting good news from the doctor, my mom was home thinking she was having a stroke and had to call an ambulance for herself. She doesn’t like to trouble me, so I didn’t find out till she had been there three hours and we were in downtown Atlanta 2 hours away. One of my sister’s is off camping and the other was still at work. Thank goodness it wasn’t a stroke, but they kept her overnight for observation.

I’m not sure if guilt is keeping me up or the fact that I get upset with my hubby’s tendency to cling to his recliner to sleep. It is his comfort zone. I can’t sleep in the bed if he isn’t in there with me. Mom took care of her problem the way she felt she had too. With het memory issues, I should be tickled she remembered what to do. I am having trouble getting past the fact I wasn’t there. God got her where she needed to be, I’m not sure how He will help me handle that situation.

It was nice to leave a doctor’s appointment feeling good for a change……

For the past two+ years, I have endured injections into my vocal cords to control twitching from palatal myclonus (spelling).
You don’t really think about thing like singing and talking, until you can’t do them anymore. I grew up singing in the choir at church and the chorus at school. I loved to sing. I loved being in the car alone, radio blasting, singing my head off. It was even more frustrating not being able to speak properly.

BUT GUESS WHAT? MY VOICE IS IMPROVING AND I AM SINGING IN CHURCH AGAIN, WHICH MEANS…….NO MORE BOTOX! WOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOOOOO……..I still need it in the strap muscles beside my esophagus, but no more painful injections to mt vocal cords. That word I have learned to hate, TIME, is finally paying off. What is that saying about patience?

You all read about my brillant neurologist wanting me off my meds, well…

Guess what? I figured out why. I stood my ground and refused to come off one, but I came off the Baclofen totally. My dry mouth was gone, but I could clear a countertop with my left hand without trying and my left leg started doing circles with every step I took. I had to have someone with me all day because my eyes were so bad. In the middle of my treatment, I was transferred to another neurologist that felt he needed to undo everything the other neurologist had done in two years. The self-professed “brilliant Botox specialist of the clinic” made the statement to my new doc that he did not feel I had dystonia. My doctor decided to see and then decided I needed to see a doctor that knows more about my condition than he did. My photo is on this blog, do I look like a guinea pig? I go to these specialist because they are specialist, supposedly.

Honestly seeing the neuro-oncologist was the best idea anyone has had since brain surgery. The full body PET Scan lead to the discovery of a problem I did not know I had. I have discovered since the surgery, I have a little difficult telling when I am sick. I hurt and do not feel well most of the time and I tend to ignore some things if it means a trip to the doctor. Barry and do not have wha you could call a social life. We go to appointments, church, see family and the grocery store. I’m truly not complaining. At this time in our lives, it is a necessity. We do the important stuff. Oh and we hit the gym. Barry is really buffing up. Good for us!