Hello darkness, my old friend.

I don't know how much more I can take.  Pain is a constant.  Anxiety is my messy roommate. 
Is this my not-so-new normal?  Getting up in the morning because my muscles and joints hurt so much I can't lie down anymore?  Soaking in a tub full of warm water and Epsom salts for 4 hours, then going back to bed?  Not being able to read or watch tv?  Seeing double or seeing a big fog settle in front of my eyes? Having transient vision loss?  Getting up long enough to cook dinner, then not having the appetite to eat it? 
I am discouraged.  

My doctor list includes my PCP, a neurologist, a cardiologist, a pulmonologist, an immunologist, a rheumatologist.  Am I forgetting anyone?  Ah yes, the 2 ophthalmologists and the vascular surgeon. Too many cooks in my medical kitchen.  
No one can decide why my immunoglobulin serum and sedimentation rates are so high. Everyone keeps adding or changing meds. I've quit counting how many meds I take daily.   I've had so many tests ~ complete heart workup, CT scan of my lungs, MRI of my brain, ultrasound of my entire abdomen and pelvic region, ultrasound of my carotid arteries.  I have to have a temporal artery biopsy and have to repeat the whole heart workup and this time have a bubble ecg.  Mammogram scheduled for Thursday.  
Enough.  
St. Jude Thaddeus, pray for me.

4 Months

4 months and counting since this cough and muscle spasm and back pain has been going on. Seriously tired of all of it and the fact that I can't do anything I really want to do.  Kitchen backsplash.  Fireplace surround.  Board and batten in the half-bathroom.  Paint the laundry room.  So many projects I WANT to do, just can't.  Sad and wishful. 
Passed cardiac tests.  Passed basic neuro tests except for balance. Seeing the pulmonologist on Tuesday. Hoping he orders a CT scan with contrast.  The one without didn't show anything. Cardiologist said I need one with contrast but it's up to the pulmonologist to decide.  UGH. 
Dear St. Jude Thaddeus, please help. 

Take that. And that and that and THAT.

I don't think I could feel any worse than I do today.  Just a *tad* disoriented, hugely upset stomach, headache, low O2, tingly feet and fingers.  
Slept all night, soaked in Epsom salts, ready for a nap.  Danny may or may not get spaghetti, meatballs and and Olive Garden copycat salad for dinner.  
Don't know.  
Gotta hang the tv on the wall today. He's been asking for weeks and the mount for it is already up and ready.  But can I lift it?  Dunno.  
How much  more of this can I take?  Dear God, please make me stronger and healthier.  

Uphill all the way

Today has been a struggle.  I sleep most of every day after sleeping all night.  I managed to bake banana bread for Danny early this morning.  Then went back to bed. 💤Baked an apple cake later on.  Then back to bed again.  Ordered my favorite dinner and couldn't eat all of it. I'm back in bed.💤 The anxiety is unreal.  I get really depressed. 💦I just want to breathe normally and have enough oxygen to do things again. I want to think clearly and be able to walk a straight line without holding onto things.  I want to know what's causing this so maybe we can address it and let me feel better. 
Will I ever feel normal again?  Will I ever have energy again?  I've given up hoping it will ever happen.  If it happens, it will be wonderful.  If not, well...I'll be a cranky old lady sitting in bed drinking iced tea and fiddling around on my laptop.  

The Long and Winding Road

I don't like discussing really personal matters on public forums like facebook, but I have a lot weighing on my mind right now.  Here seems like the right place to leave it. 
The past week has been a crazy week of more neuro tests ~ NCS/EMG's, VNG and ENG.  Electromyography, Videonystagmography and Electromystagmography.  Fancy words for tests to check your nerves cells and balance.  EMG's are done in 2 stages.  Left side on day 1, right side on day 2.  First a tech comes at you with a something that sends electric shocks through your skin to your nerves. This is called a NCS, or Nerve Conduction Study. It's not painful, but it's uncomfortable.  Then the neurologist comes at you with needles that also send electric shocks to your nerves.  He jabs your feet, lower legs, upper legs, hands, forearms and upper arms. More if the mood strikes him.  Forearms and thighs seem to be the most uncomfortable.  My forearms always seem to bruise and make me look like a meth addict. 
Meth arms:

Yesterday was an MRI to take another look at the lesions on my brain. Sounds scary, but lots of people have lesions on their brains.  Weird, I know.  MRI's are always an adventure.  First you lie on your back with a foam wedge under your knees and your head in the back half of a helmet.  Then they put earplugs in your ears and a foam pad on either side of your head to A: keep your head from moving and B: muffle the loud bangs and thumps a bit more. Then the piece de resistance:  They put the front of the helmet over your face and LOCK IT IN PLACE.  You are now at their mercy for about an hour.  Keeping in mind that I have a persistent cough, this is NOT fun.  You have to stay still and every time I coughed or cleared my throat, that part of the scan had to be redone. Just a couple of times, but it extended my time at the mercy of this behemoth of a machine and the technician running it. 

So.  Neuro tests are done for now.  After we get the results, we'll see if I have to have an MRA or anything else. Maybe this new neuro Doc will figure out my chronic headache. And THEN we can try to figure out my full-body charleyhorses!  
Today was a different doctor and scheduling different tests.  I had a telehealth app't with my cardiologist and we discussed my persistent cough, my low oxygen saturation levels, the high HR I had for a few weeks and extreme fatigue. Friday I'll go in for an EKG and echocardiogram to try to figure out why I have PVC's, and a bigeminal heartbeat pattern, and to see how my MVP is doing. I'll get a Holter monitor while I'm there so I can be uncomfortable for the weekend. We already know my high HR is caused by my low oxygen saturation levels. as is the fatigue.  Poor heart has been working overtime to send oxygen to the rest of me!  Then on the 30th, stress test part 1 and on the 3rd, stress test part 2.  
Meanwhile, the only exercise I'm allowed to do is a stroll on the treadmill.  What's the point? 😁😁😁

I need a vacation.  🏖

To the Moon and Back

Once upon a time, there was a little girl whose mother loved her to the moon and back.  They stuck together through thick and thin.  The little girl's biological father was a man who was loved very much by the little girl's mother.  But the father did not know how to love back.  He cheated on the mother many, many times.  He beat the mother many, many times. Once, he watched the mother almost bleed to death and refused to call an ambulance. He finally dropped the mother off at the emergency room, but did not stick around to make sure she would be ok.  He broke the mother's jaw when he hit her with a frying pan.  
When the little girl was 2, the mother finally had enough.  She did not want the little girl to grow up in a miserable and violent home.  The father moved out and went to live with the woman he had been currently cheating with - a woman who eventually left him to go back to her female lover, but that's a story for another time.  I will just say, that for a man who thought he was God's gift to women, it must have really bruised his ego to be left for a woman. 
The father eventually tried to get back together again with the little girl's mother. The little girl's mother wanted to give him ONE MORE CHANCE. In the end, it turned out that the little girl's father had married the ex-wife of his brother and was actually cheating on HER with the mother of the little girl, unbeknownst to either woman. The little girl's mother did not know that the little girl's father had gotten married, especially since he told her that maybe it was time for THEM to get married. The news eventually came out and the little girl's mother told him to leave her alone.  Sadly, he decided to also leave his little girl alone, too.  The saddest day of the little girl's mother was the day the little girl came to her and said, "I think my Dave daddy forgot all about me."  

But that is not the end of the story.  A few years later, the little girl's father contacted the little girl's mother and said he wanted to be part of the little girl's life again.  He now had a new little girl with his wife, the ex-wife of his brother, and he wanted the little girls to grow up together.  The little girl's mother agreed to let him back into the little girl's life (from which she had never asked him to leave) on the condition that he be a permanent part of her life and sees her on a regular basis. To see her just a few times and decide he didn't want to see her again would be cruel and hurtful to the little girl.  So, one day the little girl's father came and picked her up for the day.  He and his wife and his new baby girl took the little girl for the day.  They took her shopping and bought her a new teddy bear and a new outfit. They took her to their home and she played with her new baby sister.  They brought the little girl home to her mother at the end of the day.  And the little girl and her mother never heard from him again.  Thirty years later the little girl, all grown up, found her baby sister and the two finally got to meet again. The baby sister's mother and the father of the two girls had already divorced.  Not too many years later, the father of the two little girls died.  One of the little girls was devastated.  She had grown up with her father and she and her father had been very close.  The other little girl was also hurt, but in a different way.  She had already lost the father many years ago and had mostly grieved that loss already. Her hurt was more about the fact that she would never have the chance to get to know the man who had once loved her as much as he'd loved the other little girl who grew up with him as her daddy. She would never hear him say, "I'm sorry".   
The moral to this story:
Parents, if you break up with the other parent of your child, do not forget that the child is the one who hurts the most.  Do not leave your child behind. Do not make them feel less than. Do not sentence them to a life of wondering "why?".  
The little girl in this story is now 48 years old. She is my daughter.  I still love her to the moon and back. And we still stick together through thick and thin.

I've found my friend Kassie. She goes by Kathleen, now, but she will always be Kassie with the flowing red hair, to me. We met in 1969-----brought together in an apartment complex in Santa Monica by the extreme circumstances of each of us having a family member who was making history. She, the daughter of the director of the Apollo Space Program, me-- the sister of the first kidney transplant patient at UCLA-St. John's Medical Center. Granted, her historical legacy lives on in much larger way.
She was planting marijuana seeds in the planting bed outside of our apartment when I first saw her. This glorious creature with the wavy red hair! Did she tell me she was planting marigolds? I don't remember. But I needed to know this person.
Postscript:  Sadly, during the beginning of the Covid-19 global pandemic of 2020, Kathleen decided to unfriend me over a comment I made on facebook that she took in the opposite way it was intended.  I have tried to reach out to her in numerous ways, on numerous occasions, and have finally decided to just lay it all to rest.  Sad.

Crazy busy!

What a week this has been so far, and it doesn't look like things will be letting up! I've barely left the house in 3 weeks---just quick trips to the store and one afternoon of "I've got to get out of here" shopping! I've still got a bad case of cabin fever, but I do see light at the end of the tunnel. Roger did a lot of unpacking while I watched on Sunday. I have just been unable to look at all of the boxes without feeling overwhelmed. Now it seems more manageable. However, I'm still just looking at the boxes!
Jan had her surgery on Friday and seems to be recovering nicely. I'm so glad she has Rob there to pamper her. Jan, if you don't know it already, I love ya!
Jan and I also happen to share the same birthday----March 28th. Of course, I am WAY older and not a bit wiser. She sent me a beautiful gift that I will treasure. It's a bowl shaped like a rose and it is GORGEOUS. I plan on displaying it on my dining room table (as soon as I buy a table--lol) Thank you, Jan. I don't know what I'd do without you, Gina, Flavia and Amy! Honestly, you guys are the best!