I don't want to be me today

 For the last few months I have really come to not like that I cannot do so many things myself.  On Thursday, November 8, I fell out of bed.  About six or so months ago we had taken my mattress and box spring off of my bed frame. The box spring is on the floor with the mattress on top.  I did not fall far.  I actually slid out of bed.  I really don't know how I managed to do this.  It took an hour to get me back in bed.  I tried for about 20 minutes to get up on my own.  I knew how. I couldn't do it.  I didn't have the strength.  Finally I had to text one of my housemates.  She came right up.  I think she flew.  I still couldn't get up.  She went and got her dad, another housemate. He ended up picking me up in two stages and then he moved my legs on my bed.  I was sore when I got up later that morning, I had no idea what was about to hit me.  I had gone to the Cleveland Clinic to see if I had Lipedema or Lymphedema.  At that time, I was told I did not have Lymphedema.  Well, the doctor was wrong.  The lower part of my legs, knees to toes, blew up with fluid.  My legs were weeping and they really hurt especially the right leg.  I couldn't get in or out of my car or any car for that matter, by myself.  I had gone to the ER to check that there was no blood clots as I have a genetic blood disorder.  There weren't any.  I was in the ER for about ten hours.  I came home with a new walker.  It is a more simple one as there is no seat.  I use it in the house as I was instructed to by the ER doctor.  It is actually easier to use in the house than my cane.  I had to see my doctor for a follow-up visit.  When I got weighed, I weighed 13 more pounds than I did two weeks before.  Yup.  There was 13 pounds of fluid in my legs. I couldn't wear shoes or slippers. I ended up wearing my slippers with not putting them on properly.  Now I can. Yes, I am healing from the fall.  The fall really showed so much of what I can't do for myself.  I have been sick for more than 1/2 my life.  I was 25 when the fibromyalgia showed up and never went away. I had had bad headaches since elementary school.  I was born with tummy problems. On average, I missed one day a week of school since kindergarten.  Fortunately, I do have good friends who understand me.  These moments do not last long.  I am grateful that I can do as much as I can.  I am so thrilled to see my best friend, Kathy on Holidays and her family.  Her mom is such an awesome person.  I am making Christmas Dinner.  I am quite excited about it.  Another housemate is helping me.  I am looking for recipes for what seasonings to use.  I think we just used salt, pepper, and poultry seasoning. I am unsure.  I am going to be asking my aunt Michelle.  She is an amazing cook. 

The journey of grief

 When the physical therapist told me it was time to call hospice, my heart sank.  How could it be time?  How could I live without my mother?  I wished so much at that time I had listened when she wanted to tell me about how I was going to live without her. I had this fantasy in my head that we would both die on the same day at the same time. I had never lived anywhere but in my childhood home. After I graduated with my bachelor degree, I can't remember exactly how much time passed before the fibromyalgia showed up and never left. At the time of the flair, I taught private music lessons at a music store and at the students house. Generally, I would wake up when my mom did because she would make us breakfast, then I would go back to bed and sleep or read when I woke up in time to go and teach. I think it was about a year, maybe less when mom said resting all the time was not helping. That is when we started with light stretching. It did help. I had more mobility.

It was years though before I got diagnosed with fibromyalgia. When the nurse from hospice came, I had to sign so many papers. It is crazy how many. Mom had been in a nursing home for rehab several months earlier and she came home with a pressure sore. I told the nurse about it. 

Within a few weeks, mom choked her dinner down, even the mashed potatoes. Starting in the previous February, she barely ate anything I had to add Ensure drinks to her diet, specifically the protein ones. I called the emergency line and a nurse came out. She was able to clear mom's throat.  The next day, October 10, 2010, it happened again only worse. The person who answered the phone said a nurse would be there as soon as they are able. The nurse was at another house and it was an emergency.  The nurse arrived about 9:30 pm. She tried to clear mom' s throat but couldn't. We had to go to the ER. At the ER, the doctor tried to suction mom's throat but she kept biting down which frustrated him. The nurse kept saying, she has Alzheimer's, you have to keep saying what you are going to do. She was admitted soon after. I went home thinking I would be picking her up in the next few days. Boy was I wrong.

At 9 am I got a phone call from the doctor. Mom failed the swallowing test. I didn't quite understand. He said it again. I got it that time. He said. This is it. There is nothing we can do.  I asked about a feeding tube. He said it would go into her lungs. This is it. Do you want to take her home or keep her here on the hospice floor. I picked the hospice floor. I got dressed and cried the entire way. 

I can't write anymore. 

It's a Saturday!!!!!

 Today is Saturday!  On this particular day I do not have any lessons.  Greg is absent and so is Madonna.  I so love her name!!  I am sitting in the living room I teach in because it has a/c. My bedroom does have a portable a/c like this room but I really don't feel like going up there right now.  Peony is in here too.  She is just hanging out with me.  Because of the bursitis in my shoulders, I cannot hold my arms up long enough to wash  and dry my own hair so I go to get it done.  Usually, I get it done on Thursdays, but this week I had a doctor appointment so I needed to reschedule to today.  I so love that when I do need to reschedule that the two young ladies on Saturday french braid my hair.  Ruth, my usual person, does my hair a bit different and I really love that too.  Overall, I really like everyone at the salon and the owner is my across the street neighbor so I am supporting a good neighbor!!!!!  

It has been really hot for the last few weeks here.  Today I really really just ache a lot from it.  My everyday headache is more than the usual level.  I am not as nauseated as I was yesterday, just the usual amount of nausea.  Thank goodness starting tomorrow it will be cooler for us.  I am so glad.  

Last night I was sitting at the table with C. and I was finishing up my dinner when I took a drink of water that went down the wrong pipe.  It happens so often now.  I don't know why.  Anyways, Heather BT happen to be in the kitchen/dining room area when this occurred.  I told her this happens a lot when I drink water.  She said to use a straw.  I have since then and wow, it has really helped.  She was also right at how much you drink more of because you are using a straw!! I now have chosen some reusable straws for my water bottle.  It was so much easier to drink all the water I needed to last night.  Generally, it is a huge struggle because of the swallowing issue.  I am just really happy about this.  reusable  straws rule.  

In my Michigan Lipedema group, a woman was giving away her old vibrating plate machine.  I was the fourth one to say I am interested in getting it.  Apparently, the first three either didn't get back to her or never came to pick it up, who knows, she messaged me to see if I was still interested, which I  was and told me to come and get it.  James and I went the next day.  Now, I had no idea what it looked like or size or how to use it or even what it would do, I just knew that some members of the group said it really helped.  We picked it up.  Bill brought it in later that day and when he asked me where I wanted it, I said oh in my room would be fine, he laughed then said it won't fit in your room.  I said, oh, the living room?  That is where it is at.  I have used it a few times.  Because my standing ability at this point in time really sucks, I can't stand on it very long, we're talking at most, 1 minute.  The problem that has arrose is that in about 30 or so minutes later, my daily, never ending headache gets worse.  Yes.  Fortunately, I say my neurologist and she knew exactly what machine I was talking about even before I showed her the picture!  She said she wasn't surprised about the pain getting worse afterward.  C asked about me sitting in a chair and putting my feet on the machine and using it that way.  Dr. A said that would be really good because then my head won't be vibrating also.  The cool thing though, is that both Heather BT and James love the  machine.  Heather BT uses it everyday.  I am so happy about this.  She is up  to 10 minutes and I am really glad.  I just now need to find what will work for me.

On Tuesday, both C and I will have our botox shots at the neurologists office.  This will be my third round.  It was funny because when Dr. A asked if I thought they were helping, I couldn't answer.  I didn't know.  I said I think so.  After this round I will pay more attention.  I did tell her I had bought a chronic pain tracker.  I hadn't used it, but I have it.  She laughed and said she wasn't surprised.  I said I really try not to focus on my pain level.  That Dr. A said is good.  I am donating the chronic pain tracker book.  I used it once.

Pictures: Top picture is Valerian - he is a Yorkie.  Then Me and Peony.  Third down is Peony, my dog, Fourth down is my sister, bottom, Peony

new portable a/c unit

 About a week ago, a new portable a/c unit arrived!!  It has helped a lot.  I will be ordering another one this  week.  I am really happy about these because we are expecting a very hot and humid summer.  Not as hot as the south, true, but for SE Michigan, hot.  I  have one for my room and we have one for the living room, which is where I teach.  The next one, I am no longer sure where it is now going.  It will be helpful no matter where we put it.

Anyways, enough about that.  I can't believe it is July already!!!!  Where did June go?  Seriously??  Peony and I have been hanging out as usual.  She is such a beautiful little pup.  She is 8 now.  8!!!  What a joy she sure is.  All my students love her.  One is afraid of dogs so I always have all the dogs blocked.  I will not force our dogs on anyone.  It is mean and rude to do that, especially if the child is afraid.  I was afraid of dogs for the longest time growing up.  I was walking past a house in our sub and that family's dog jumped over their fence, pinning me down.  I was screaming.  I was not very old.  Early elementary age, I think.  The family was in the back yard but they weren't paying attention to their dog.  They didn't even notice it wasn't in their yard.  a neighbor was pulling in our sub and happen to see my pinned to the ground by a big dog.  He and his wife hopped out of their car to help me.  It seemed to me it took a long time for him to get the attention of the owners in the backyard.  I, naturally, was still rather upset and crying while she was trying to calm me down.  I do remember them driving me home.  They knew where I lived as they were neighbors.  They told my mom what happened and boy was she mad.  I finally calmed down.  I avoided walking anywhere near that house for years.  They moved several years after that incident.  So, like I said, I understand being afraid of dogs.

I have been so so so nauseated these past few weeks.  The heat has really gotten to me and so has the pain.  Generally, the meds I take help enough to take the edge off.  Not these last few weeks.  I have also had way more migraines than usual.  I know a lot of it is the weather and the changes of the weather but not all of it.

I am hungry so I am going to go and get something to eat now.  I hope your 4th of July was a good one!!!

June 22

 I had an appointment with my Rheumatologist today.  It was just a regular check up.  My right shoulder is starting to hurt again at the bursa part of the arm.  I have an appoint with the specialist on July 13.  I am going to call  tomorrow and see if I can get in earlier.  I really don't want it to get worse and freeze.  It was partially frozen when I first saw him in May.  Not good.

The heat wave is back.  It is 90* right now and with the heat index it feels like close to 90*.  The rest of the week will be super hot too.  Ugh.  I know there are parts of the country in the south that are much hotter, I feel for all who live there.  Anyways, I am in my living room where the portable A/C unit is.  I am hoping by the weekend we will have at least two window units.  One is definitely going in my room.  I think the second should go in the other Heather and Bill's room.  

Peony is doing pretty okay. Her wound is healing really well.  She is no longer wearing a cone or a collar.  When she had the cone on she looked so pathetic and sad.  She did look too sad with the collar.  My poor little girl.  She is my favorite companion to run errands with.  She loves riding in the car.  Simply loves it.  I have a seat belt leash that I put on her.  This way she can look out the window with the window part way down and I don't have to worry about her jumping out.  Peony is enterprising enough to try that once.  She is fearless.  She is such a beautiful little girls.  She is a terrier mix.  I could do one of those DNA things for dogs but they are expensive and seriously, I don't really care.  She is mine and that is what matters.  She loves sleeping on my bed at night.  I love having her sleep on my bed at night, now that we took the bed off of the frame.  It was so high that I was kind of jumping to get in my bed.  When Heather BT saw that she was like, you are going to fall.  I probably shouldn't have pointed out that I had, many times.  Well, the little foot stool we call the jump came in for me to use.  It worked.  Then we realized why don't we just take the bed off of the frame.  I really like it this way.  I can actually sit and my feet are on the floor.  It is beautiful.

It is almost time to teach the only lesson of the day.  Bye!!!

Heat Wave

 Yesterday was 97*, however, with the heat index it felt more like 105*.  Today is only 93* and it has cooled down to 90*.  I do not do well in high heat or super cold.  Both make me ache more.  Right now i am in the living room which has the portable air conditioning unit.  It feels wonderful.  I do have 2 window fans now and we do have an attic fan.  When the temperature is 90 and above it is pointless.  It could be much worse though.  We could live in the southern states.  I will keep what weather we have.  This weekend is suppose to be nice out and cooler.  I will definitely enjoy that.

On the brain fog front, it hasn't been super bad, just the usual.  I can only focus for so long and. then I need a break.  I think what really helps me with teaching lessons is a combo of being able to focus for a bit and the the hyper focus of the ADHD.  I definitely think that is my superpower.  Also, when I am focusing on a lesson, my pain level doesn't seem as high.  That is a good thing.  I am really learning a lot about my ADHD.  I always try to improve myself and strive to do better.  I want to be the best me I can be.  Yes, I am in pain 24/7.  Yes, I have all the other things that go along with fibro, I don't think that for me, that it means I can't strive to be a better me.  The more I learn about ADHD, the more so much of me is explained.  My extra chattiness.  Yes, I was that child.  The one who talked to everyone in class.  My mom once told me that when she went to my first school conference for first grade, my teacher asked my mom if I ever stopped talking.  My mom asked her if I talked all the time in class.  The teacher said no, just most of it.  Mom said that was good, last year, she talked all the time.  Yes, that was my ADHD.  It wasn't something that anyone really tested for in girls at that time.  This was the early to mid 70s.  When I wasn't talking, I was daydreaming.  I have this really weird thing I can do.  I can see my daydreams in front of me.  Like I am watching a movie.  I tried to explain it to my best friend once and she thought it was so weird. Again, inattentiveness, ADHD.  I have a really hard time falling asleep.  I always have.  My brain never shuts up.  You would think with the amount of brain fog I have, that it would be easier to fall asleep.  Nope.  Not at all.  Again, ADHD.  This is just a few of what I have learned in the past six or so months since being officially diagnosed.  

I am so excited that the Dowton Abbey: A New Era movie is out!!!!  Kathy, my best friend, and I are trying to find a weekend where she can come to town and then we can see the movie!  Her mom wants to see it too.  That will be a lot of fun.  I love her mom.  She is a really neat person.  I have pretty much known her almost all of my life too since well, I have know Kathy almost all of my life.  It makes sense.  Kathy's Dad passed away several years ago now.  He was a really good guy.  A good dad.  I remember at Kathy's wedding, she didn't want to do the Daddy/Daughter Dance because both she and her Dad are quite shy.  I didn't blame her.  She had always been shy.  One of the things I loved doing when we were young was going to her house and hanging out.  We would read and listen to music.  Apparently, we would also dress up their toy size poodle Pepper in doll clothes.  Pepper was such an awesome dog.  I really loved that dog.  Kathy's mom said that she would let us put whatever clothes we wanted on her.  We also would put her in a doll stroller and walk her outside.  That poor dog.  We both loved her though.  She was love in the form of a dog.  Plain and simple. Just love.  Kathy and I still like to hang out and read together.  I have much more time to read than she does since she has these cute minions she is raising, although one is now 24, I think, and another is 19.  The youngest two are 15.  She also has a hubby.  I can't wait to see her and her mom soon and the movie!!!!!

I Can't Believe it Has Been a Year!!!!

 Wow, it apparently has been a year since my last post.  For someone who used to write a post everyday this is really kind of crazy!!!  It has been a year.  So much has happened.  The pandemic is still a thing.  All my in person students must wear a mask as both Heather BT and I have several chronic issues that put us in a very high risk situation should either of us get covid.  We are both vaccinated.  Everyone in the house is.  One is most unhappy about it, but he still is.  It is hard for some of our friends to understand that while they may get a mild case of covid as they are healthy and all, however, should they pass it on to either Heather  BT or me, well, that is where the problem could come in.  We are not healthy.  We have compromised immune systems.  We have serious asthma issues.  We already can't breathe well.  Anyways, we do hope that the pandemic will end soon and everything will be okay.

The biggest thing besides covid that happened this past year is that I was diagnosed with ADHD!!!  So much makes sense now.  I was seeing a therapist about my eating disorder and anxiety.  It was a failure.  First, she would say, that isn't really binge eating.  Really?? What would you call it then?  Then, every session she would ask, did anything make you anxious this past week?  Ummm, breathing?  I have anxiety 24/7.  I could not get her to understand this.  I saw her for about seven months.  In that time, she couldn't understand that I had constant anxiety and my eating disorder.  Yes, I stopped seeing her.  It was incredibly frustrating.  I cannot find one now that takes my insurance and is accepting new patients.  However, discovering that I have ADHD has really helped a lot.  For one thing, my anxiety.  Yup, my anxiety is probably mostly from ADHD and not really anything else.  Yes, I have brain fog issues from fibromyalgia, but most of the anxiety is most likely from the ADHD and the  rest from brain fog. My impulsiveness of shopping on amazon in the middle of the night?  ADHD.  My daydreaming? ADHD.  My hyperfocus on lessons? ADHD.  This is what actually has helped my be able to keep teaching the little bit I do.  Because of the amount of brain fog I have, I cannot teach full time like I used to.  Hyperfocus allows me to be able to focus enough to teach a couple lessons a day before I can't focus anymore.  There is so much more to my ADHD than just the few I mentioned.  It really has helped me understand why I do some of what I do and now some of it I have learned so new coping skills.  I really really wish I knew I had ADHD when I was in college.  It would have made things so much easier for me.  College was hard enough because of my deafness and now I realize because of my ADHD.  I am just so thankful I had a mom who did what she could to help me complete my classes and graduate with my bachelors degree.  It seems kind of funny now because I am partially deaf and at the time I didn't wear hearing aids, to be a music major.  I was though.  My students actually think it is cool that they have a deaf music teacher.  Only once have I ever had a student quit because they found out I wore hearing aids.  Yes, I was upset and it really hurt.  It was a Takelessons student.  When one of the reps called to tell me that the student had canceled all the lessons and why, I was so upset.  He was the one who had been speaking with the mom.  It didn't make sense because the student have four lessons with me before she saw the wire on my ear.  He asked how the lessons were and the mom said they were good.  He could not understand why after four lessons that were good and the student was doing really well, why all of a sudden this was a problem.  Yes, Takelessons is aware that I am partially deaf and that I wear hearing aids.  They know it is not a problem.  Anyways, that was the only time and it was several years ago now.  Mom put a lot of work into several of my classes.  When the classes were in the big lecture halls, I couldn't hear anything because of the low rumble of talking even with the professor using a microphone.  I would record all of the lecture and write down everything that was written on the board.  Mom would take both and write notes for me to be able to study.  I don't remember how many classes Mom did  this for me in.  Without her help, I would have failed all of them.  She was amazing.  I miss her a lot.  Yesterday, I was sitting in my chair in my room and all of a sudden I missed her like it was yesterday she  passed away.  Grief is a strange creature.  It comes and goes whenever it feels like.  It has been almost 12 years.  How can it be?  

I have a new neurologist now.  I am very pleased with her.  She said it was time to get aggressive with this headache and the migraines.  She said that 19 years is way to long to have a headache.  I so agree.  I have had 2 rounds of botox.  I am unsure if it is helping.  I don't know.  I do know that in April I was having a lot of migraines.  I have had less since May but I still have a lot of them.  My daily headache is the same as always.  It is there.   Everything else is okay.  Some stuff is worse some stuff is better.

Peony continues to be the light of my life.  I so love that little dog.  She is such a good companion.  I couldn't ask for anyone better.  She makes everything better.  Just everything.  There are two lessons that Peony can't listen under the piano bench to.  One is because he is allergic to her and the other is because she is afraid of dogs.  Other than that, Peony thinks her job is to listen to all the lessons and that all my students come to see only her.  It is so funny.  There are the few students who she will not let in the living room without a tummy rub and then will not let them leave without a tummy rub.  They all love Peony.

I will try not to wait another year to post in my blog again!!