Tick...tick...tick...

Today is the last day of September. How did that happen?! I am starting to feel a real sense of urgency to get back to normal and get my house in order. We are hurtling full speed towards the end of the year and there are three holidays between now and then.

Instead of feeling satisfied with my progress so far, I have begun feeling impatient again. Yes, I know, I need to slow down and relax. The problem is that I still feel that I was robbed. I lost an entire month of my life and there is nothing I can do to get it back...

...sigh...

Okay. I think I've got that out of my system. I have to focus on the present and quit being bitter about what I lost. I am so grateful for my life and everything in it. Sometimes I lose sight of the fact that things could have turned out quite differently for me. I really believe that I am going to make a full recovery - I just have to be more patient with myself.

In the meantime, I am going to do my exercises and be grateful all the things I CAN do. I just have to give myself a little more time...

Will I have more fun?

Before you look at these pictures I feel like I need to explain to you why I did it. It's silly that I feel like I need to justify myself, but here goes...

I have had a hate/hate relationship with my hair since I was in 3rd grade. That's when my mother had my long thick hair cut into a pixie cut. The problem was that I didn't have the right kind of hair for a pixie - it was coarse, thick and curly. It was a mess. I grew up never knowing what to do with it. What I longed for was straight, shiny blonde locks. We always want what we don't have.

So, was it karma when I woke up in the hospital and found my pillow covered with my curls? My hair has been thinning for a while now I assume because of lupus. I had been using women's rogaine and special shampoos for years, but nothing seemed to make a difference. One of the possible benefits I was going to experience by taking the Benlysta infusions was hair regrowth. Well, I guess I wan't on Benlysta long enough for that to happen and after all the trauma that my body has been through recently, my hair fell out. I wasn't totally bald, but my hair fell out in big patches all over the crown of my head. 

When I got home from the hospital I asked Ron to use the clippers on me to cut off the remaining hair and make it really short. He declined - he was afraid to "mess it up!" Isn't that funny?! So I ended up asking my friend Denise (who is a hairdresser/stylist/colorist) to cut my hair off. At the time I had only been out of the hospital for a couple days so she came to my house to help me out. She cut my hair SHORT just like I asked her to. After all, it's only hair, right?

SHORT!

With encouragement from jb, Mandi, Beckie, Leah and Denise and patient tolerance from Ron, I decided that this is probably the only time in my life that I would be brave enough to try something so extreme. Last night I went to the salon and Denise bleached my hair. It's not quite the blonde that I had imagined, but more a goldish color. I do like it, but when I saw myself in the mirror this morning I was surprised - I had forgotten! So here I am, not quite a blonde but having lots of fun ...

Ron says he likes it, but he loves me. When it's time to color again in about a month, I may opt for another color...maybe royal blue or purple or orange! Relax, it's only hair!

Big Change on the Way!

Tonight I am doing something that is really outside my comfort zone. Hopefully I will be brave enough to share the change with you. Tune in tomorrow to see if I am courageous enough to post pictures of the new me.

My Favorite Season

Last Sunday I looked out my kitchen window and thought to myself, "It looks like Fall..." Something about the quality of the light had changed...I'm not sure if that really explains it, but I could see the difference. So, I stuck my nose out the door and I could actually smell autumn in the air.

What is it about this season that I love so much? The first thing that comes to mind is the colors - red, orange, gold and yellow - warm and comforting. I also enjoy the cooler temperatures - I love wearing turtlenecks and sweaters. Finally, autumn brings Halloween, pumpkins and the beginning of the holiday season. The holidays will bring the girls home and that's always a good thing.

In a couple weeks, Ron and I will be going to Half Moon Bay for the annual pumpkin festival. This signals the beginning of the holiday season and maybe the start of some Christmas shopping. I will be walking more carefully and slowly than last year, but I am going to enjoy every minute. I have vowed to never take anything for granted again....

St. Mary's Acute Rehabilitation Unit

 

The next part of my journey back to wellness began when I was transferred from UCSF to St. Mary's Acute Rehabilitation Unit. Ron had visited a couple rehab units before choosing the one at St. Mary's. It turned out to be an excellent decision.

As much as I credit the staff at UCSF for saving my life, the staff at St. Mary's brought me back to life.  When I arrived there, my muscle weakness was so severe that the only thing I was really able to do was feed myself. At the beginning of my 15 day stay at St. Mary's, every time the nurses or therapists got me out of bed, my blood pressure would drop and I felt incredibly light headed. I honestly wondered if I would ever feel normal again. Even now, although I am doing so much better, I still wonder about that!

During my time at St. Mary's, I was treated and seen by very supportive physicians and a neuro-psychologist, incredibly skilled physical, occupational and speech therapists and cared for by amazingly compassionate nurses. I will never forget my first real shower since my whole hospital experience began. The nurse who wheeled me down to the shower room in a shower chair was tiny and  completely unconcerned about getting wet. I had had bed baths, but it was heaven having my hair washed and feeling the water on my skin.

Every morning I was given a therapy schedule. Typically, I would have 45 minute sessions each of physical, occupational and speech therapy before lunch then second 45 minute sessions of physical and occupational therapies after lunch. There were rest periods scattered throughout the day and believe me I did take advantage of them. These therapy sessions were challenging and difficult. During the time that I was just lying in a hospital bed, my muscles had gone to waste. Waking them up and making them useful again has been painful and probably the most difficult thing I have ever done. Thank goodness for the therapists who challenged and encouraged every step of the way. Talk about tough love! I will never be able to thank them enough for bringing me back to life. Even though I was so anxious to leave rehab to go home, it was very emotional saying good-bye to the therapists that had become a part of my every day life - I still miss them.

As I said with UCSF, I hope you never NEED to be in an inpatient therapy facility, but if you do find yourself in circumstances that you do, please know that St. Mary's Medical Center Acute Rehabilitation Unit comes with my highest recommendation!  

UCSF Medical Center

I'm sure that my opinion and assessment of UCSF Medical Center, its doctors, nurses and ancillary staff is going to sound very biased. Well, the reason for that is justified. After all, those people saved my life!

Apparently, at the beginning of my journey into delirium and health crises, there was a discussion about whether I should be taken to the emergency room at Stanford Hospital or UCSF Medical Center. Mandi was instrumental in helping Ron to make the brilliant decision to go to UCSF. I'm sure that Stanford is a perfectly fine facility, but logistically it wouldn't have worked out as well. Mandi is a student at UCSF and talked to some of her professors to get their opinions. Besides that, she lives very close to the hospital and made the case that people could stay with her if they needed to rest or to shower.

I can't say enough about the quality care I received. For all intents and purposes, I went into the hospital like one big question mark. I was tested and observed by teams of doctors from several different specialties: internal medicine, rheumatology, pulmonology, neurology, endocrinology and infectious disease. These teams collaborated with each other until they determined a diagnosis for me and the best way to treat me. Most of the doctors that came to my room, introduced themselves to me with their first names only. Even though I was hallucinating and often delirious, this put me somewhat at ease. I was always treated with dignity and respect even though my behavior was pretty off the wall for the first 5 or 6 days that I was there.

The nursing staff was everything I expected and more. Since I grew up as the daughter of an RN and having worked in a hospital as a teenager, I have always known the difference between someone who works in the healthcare system who does the job out of compassion and a desire to make a difference or someone who is just putting in the hours before they can clock out at the end of their shift. I will have to say that probably 95% of the staff that cared for me during my 17 day stay at UCSF that toured through the emergency room, the transitional care unit and the intensive care unit were compassionate and were truly concerned about me and my family. When I became more aware of what was going on and where I was, I tried to thank each one as they took care of my personal needs, gave me medications, drew my blood, brought my meals and cleaned my room. Each time I said thank you, the person I said it to seemed surprised as if it wasn't something they heard very often. That doesn't seem right.

Once I am able to walk without an assistive device and can walk in there under my own steam, I will go back to UCSF to thank and shake the hands of all those people who got me through the biggest crisis I have ever experienced. Yes, I suppose you can say that I am incredibly biased.  I truly hope you never NEED to go there, but if you do, please know that UCSF Medical Center comes with my highest recommendation!

Guilty Pleasures - Summer 2012 - part 2

Recently, I found myself with a lot of spare time on my hands. Reading would have been a great idea but my vision has been pretty blurry until the last week or so. Consequently, I spent quite a bit of time watching TV. The TV channels were limited in the hospitals, but I did find TLC and an abundance of TERRIBLE and ADDICTIVE TV shows.

In my own defense, I do have an understandable interest in all the shows that include brides and weddings since jb and Causten are getting married next year. You could consider my watching "Say YES to the Dress," "I Found the Gown," "Beverly Hills Brides," and "Four Weddings" as a kind of research, right?

I have absolutely no excuse for watching "Toddlers and Tiaras" or "Here Comes Honey Boo Boo." I am wholeheartedly ashamed for my addiction to these shows. Most of the parents shown on "Toddlers and Tiaras" are the worst kind of people who enter their young daughters and sons into pageants for very selfish reasons. They feel validated when their child wins a crown or a title. A mother on a show I saw this week actually admitted that she had children for the sole purpose of putting them in pageants! Can you imagine?! All I can tell you is that I am so horrified by the way these people spray tan their little girls, apply make-up, hairpieces and even false teeth to them so that they will be more competitive in the pageants. I am shocked by the amount of money they spend on a single dress...As for Honey Boo Boo, it's like coming upon a car accident and not being able to look away...just terrible! Shame on me.

Other shows on TLC that are more interesting and not quite so terrible are "Long Island Medium," "Breaking Amish," "What Not to Wear," and "Abby and Brittany."  I also found a show on the Animal Planet channel called "Tanked" about a couple of New Yorkers who have a custom aquarium business in Las Vegas. That's a great show!

Now that I am able to read again and am out of the hospital, I really don't have a good excuse to watch any of these shows (except for the bridal ones!),  but it may take some kind of 12 step program or support group to help me to quit watching them! May the force be with me!

Book Two: E. Aster Bunnymund

It's been a while since I told you about the first book in this series. I guess I got a little sidetracked this summer. Anyway, now that my eyes are useful again, I decided it was time to start reading some of the books on my nightstand.

E. Aster Bunnymund and the Warrior Eggs at the Earth's Core is the continuation of the story of the Guardians of Childhood. Book one was Nicholas St. North and the Battle of the Nightmare King. As the first book gives you the story of the origin of Santa Claus,  book two introduces readers to the Easter Bunny and his love of all things egg-shaped. Did you know that Bunnymund also invented chocolate? What I learned by reading this book was that the Easter Bunny is very strong, tall (7 feet - if you factor in the height of his ears), and a fierce warrior.

Pitch, the Nightmare King and his army of Fearlings reappear as the villains in this story. I won't tell you how the story ends, but it wouldn't be a very good children's book if good didn't triumph over evil, now would it?! The main messages of this book are that the power of real friendship can be magical and that taking on the sorrows of the people you love will make you stronger in the end. Isn't that beautiful?!

On November 21st, Rise of the Guardians will open in theaters. This movie is based on this series - here is a trailer for the movie...

I am very excited about this and hope to be able to convince someone to go see this movie with me! Also, the next book in the series is due out on October 2nd...The Discovery of Toothiana Queen of the Tooth Fairy Armies...just 10 days from now and I can't wait!

Only Human

I have been home from the hospital for 6 days now, but it seems like ages since I was struggling through my physical therapy sessions and trying to eat the hospital food. It's hard to know where to start with my story, but I will do my best to stick to the facts and keep it as short as possible.

I have lupus. I started receiving infusions of Benlysta in March. Benlysta is a fairly new lupus medication and has done amazing things for some patients, but does have some adverse side effects. For me, the side effects really kicked in at the end of May with dizziness, headaches and nausea. I was unable to work and went on short term disability. As June and July wore on, I became more fatigued and weak. What I failed to tell anyone, even the people closest to me (Ron and my girls included), just how sick I really was. I was in denial because I wanted so badly for Benlysta to work for me. I will have to say that it did relieve my arthritis pain, chest pain and pleurisy.

Some of the details of what happened next are fuzzy, but here's what happened as I remember and as I have been told. I was getting weaker on a daily basis. I was always thirsty and was having to go to the bathroom every 1 1/2 hours. Since I couldn't walk anymore, Ron was carrying me to the bathroom. My poor husband. Sometime during the first weekend in August, I became delirious and was having hallucinations. I don't remember that weekend at all. On Monday the 6th, Ron took me into my doctor's office and he prescribed Prednisone (a steroid) for me and also gave me a shot of depomedrol - another steroid.  This was in addition to a long list of medications I was already taking...Plaquenil - for lupus; Gabapentin - for pain; Premarin - hormones; Dexamethazone - a steroid -  for dizziness; Amlodipine - for blood pressure; Folic Acid - supplement; Ambien - for sleep; Ativan - for anxiety and sleep; Zofran - for nausea; and Nystatin - for thrush.

Ron took me to the ER at UCSF Medical Center. I don't remember being in the emergency room, but once the doctors started trying to figure out what was wrong with me, things appeared very serious. My blood sugar was 853 - the normal range is 80 - 120.  I was found to have a severe urinary tract infection that had gotten into my blood stream. I was admitted to the hospital and shortly thereafter, had a seizure. I had a second seizure that was witnessed by the doctors and unfortunately, my girls. I was transferred to Intensive Care and during that 5 days I had many diagnostic tests - CT scan, MRI, bronchoscopy, EEG. I continued to be delirious, and had terrible hallucinations. Truthfully, I don't remember my days in ICU other than as a nightmare. I have been told that I said many outrageous things to several different people. Maybe it's a good thing that I don't remember that!

During the 17 days I was in UCSF Medical Center, I was visited by teams of doctors from many specialties - rheumatologists, endocrinologists, internal medicine, pulmonologists, infectious disease. It was determined that I had steroid myopathy (Cushing's Syndrome) as well as Type II Diabetes, PCP and Nocardia. The last two are encapsulated fungal infections in the upper lobe of my right lung. As I understand it, the steroids were responsible for most of what happened to me - they caused me to be immuno-suppressed which allowed the fungal infections to settle in my lung, caused the diabetes, muscle weakness, possibly caused the seizures, and probably caused my hair to fall out. 

After 17 days in the hospital, I was transferred to St. Mary's Medical Center Acute Rehabilitation Unit where I stayed for 15 days. I received physical therapy, occupational therapy and speech therapy. I can't say enough about the quality care I received at both hospitals by the doctors, nursing staff and therapists. I feel lucky to be alive and so grateful for the love and support I got from my family. Ron rarely left my side and probably drove the doctors crazy with all of his questions, but he took care of me. Through the worst of it, I have visions of him being there holding my hand. jb flew in from New York and unfortunately I was out of it for most of her visit. Mandi and Beckie were there with me as well. I do remember each of them sitting next to me and holding my hand at different times. My sister, Stef, who is a doctor, flew in from Tucson and helped to take care of me. My cousin/sister Leah was at the house when I got home and cooked several meals that are now in the freezer.

I have been so incredibly overwhelmed by the love and support of my family and friends. I am still struggling with going up the stairs, but am getting a little stronger every day. I use a walker to move around the house, and am starting to be able to do more things on my own. I have MANY follow up appointments with several doctors thru September and October. I am looking forward to the day when things are "normal" again. I am determined to take care of myself from here on out and will never take my health for granted again. 

I am sure that I have gotten some of the details wrong, but this is how I remember it. I am on the road to recovery. Great big patches of my hair had fallen out so I asked my friend Denise to cut off the rest of my hair. I still have a "moon face" due to the steroids so together with my bald head, I am quite a sight! Everyone is being very sweet, though, and I have a big assortment of hats to help camouflage my head. 

So, that's my story...