Patches...I'm dependin' on you son...

...well, my pain patch, that is.  Last week, my pain management doctor gave me a pain patch prescription.  He did warn me that there would be a snafu with the insurance company, and there is.  So, still waiting on that.


It has been rough, overall, for a while now.  Lately, I have crumbled with surprisingly (even to me) little exertion.  Yesterday, I felt like I had enough life in me to play around in the kitchen.  I decided to make a homemade roasted eggplant pizza.  (it was so delicious, I'm tacking the recipe on at the end of this post) Once the pizza dough was rising, I started to think of what else I could make with yeast, so I dove back in to make cinnamon buns.  Believe me, I know that it is the last thing I need.  For some reason, I just felt like cooking...and, I really do enjoy it. 


By my standards, it was a lot of in and out of bed, and back and forth to the kitchen, for the different stages of these two recipes.  I knew batter..I mean better, but did it anyway.  By the time the pizza came out of the oven, I was way beyond my breaking point.  I was insanely sick last night and this morning. It was absolutely horrible.  I have so many symptoms, many that cannot be helped with my son "Patches", or any other medication.  Anyway, one of my most miserable symptoms is that creepy, eerie feeling like my muscles are decomposing from the inside out.  It is the worst.  I had to put the TV on this morning, just for a distraction.  Otherwise, I think I would have snapped. Bad, bad day today.


Since I love cooking so much, I've been spending a lot of time in bed looking up new recipes for Easter.  Ryan is having Easter at his house this year, but I would still like to cook, cook, cook.  I called Ry earlier and started out by telling him all the different dishes that I would like to make.  As I was talking, I was thinking to myself how sick I was today...from COOKING.  By the end of the call, I basically told Ryan that I take it all back, I'll make one thing.  (Erica...remember taking Poor Ryan to Wawa...or was it Wendy's???)  I giveth and taketh away...  In the end, I knew that what I would like..no, make that, love to do, and what I could do are two completely different things. 


I'm going to have to cut this short.  It is hard typing when feeling as sick as I do...my brain isn't working and I am backspacing every other word to retype and retype again.  Also, I have been having a newer issue called transient paralysis.  It sounds worse than it is. Basically, my hands freeze up from time to time.  It is momentary, but for some reason it is worse than ever right now. It is too hard typing with my hands freezing up.


Thank God for copy/paste...


Eggplant Pizza....SO DELICIOUS!!

• 
  
  • 1 large eggplant (1 1/4 pound)
  • About 3 tablespoons olive oil
  
  For dough 
  • 1 (1/4-ounce) package fast-acting yeast
  • 2/3 cup warm water (110-115°F.)
  • 1 2/3 cups all-purpose flour
  • 1/2 teaspoon salt
  • 2 tablespoons olive oil
  
  
  • 3 ounces grated mozzarella (3/4 cup)
  • 3/4 ounces grated Asiago or Parmesan (1/4 cup)
  • 2 tablespoons olive oil
  • 2 tablespoons minced garlic
  • 1/2 teaspoon dried hot red pepper flakes..it's spicy with the red pepper flakes, but we like spicy food.  You can adjust to your taste.

preparation

Broil eggplant:
Cut eggplant into 1/3-inch-thick rounds and arrange in 1 layer on a foil-lined large baking sheet. Lightly brush both sides with oil and season with salt. Broil 2 to 3 inches from heat until golden brown and tender, 3 to 8 minutes on each side.

Make dough:
Dissolve yeast in warm water. Blend flour and salt in a food processor. Add oil and blend. With motor running, add yeast mixture all at once, blending until dough forms a ball. Knead dough on a lightly floured surface 5 minutes. Put in an oiled large bowl and turn to coat. Let rise, covered with plastic wrap, in a warm place until doubled in bulk, 1 to 1 1/4 hours. While dough is rising, put a pizza stone on lowest rack of oven (remove other racks) and preheat oven to 500°F.

Dust dough with flour on a floured surface, then shape and stretch into a 12- to 13-inch round. Sprinkle a baker's peel generously with flour and carefully transfer dough to it. Jerk peel; if dough sticks, lift it and sprinkle flour underneath.

Assemble pizza:
Toss together cheeses and sprinkle 1/4 over dough. Cover with eggplant, overlapping it, and sprinkle with remaining cheese. Heat oil in a small skillet over moderate heat until hot but not smoking, then cook garlic and red pepper, stirring, until just fragrant, 30 to 40 seconds. Spoon evenly over eggplant.

Line up far edge of peel with far edge of stone and tilt peel, jerking it gently. When edge of pizza touches stone, quickly pull back peel to transfer to stone (do not move pizza) and bake until dough is crisp and browned, 12 to 15 minutes. Slide peel under pizza to remove from oven.

Feeble attempt at blogging...

Today, I had two appointments in Miami.  UGH, I was dreading this day since I scheduled the visits. The first was with a new pain management specialist.  He was the best. There are so many people abusing prescription pain medication, that even pain management specialists are hesitant to write prescriptions.  Usually, they need to see an X Ray, MRI, etc.  This guy was great!  He believed  what I was telling him, and really seemed to care.  PHEW!!  If he questioned me, I think I would have cried.  He is taking over my Vicodin prescription (my immunologist is no longer permitted to prescribe it, due to insurance reasons).  I explained to him that I am in pain, to some degree, almost every minute of the day.  In most cases, I do not take pain medication until I am about to the point of tears.  I was thrilled when he said that he was also prescribing a pain medication in the form of a patch.  He said that it should relieve  most of my pain throughout the day.  At times when I still need more, I can take the Vicodin too.  I will get it tomorrow and cannot wait to see how it works. Taking away the pain is so great, but unfortunately, there are still so many debilitating issues I deal with daily that it won't put me back in the game.  I'll just be more comfortable ~ which is a bonus.  Hopefully, it will be effective.  

The second appointment wasn't quite so smooth.  This appointment was with my immunologist.  I  have to say that I am not 100% convinced that I should be seeing her.  It is funny because my neurologist referred me to her, then the following time I saw him, he wasn't so keen on the idea....agreeing with me that she has me pegged wrong.  SO tired of the doctors contradicting each other and themselves..ALWAYS!!!!!    It was an awkward, funky appointment.  

Dr. Rey has just left the University of Miami and is now in her new location.  She is in the process of getting the insurance situation set up.  This appointment could have been put off for months.  We only had to go over my blood work.  So, when setting it up, the receptionist told me that they were not set up for accepting insurance yet and what I thought she said, was that there would be a $69 charge.  When I was paying, she told me it was $269.  I must have misunderstood the receptionist on the phone, but I can't tell you how mad I was at myself.  Waiting for her insurance to be in place, wouldn't have been a problem.  It certainly was not important enough to pay $269....whatever...

On the way home, I thought of two very important questions that I had for her.  I don't know how I forgot to ask them while I was there...whatever...

I do have to tell you about a couple that was in the waiting room with me today.  I'll never deny that I feel sorry for myself, from time to time...privately.  My experience in the waiting room today was like having a bucket of ice water thrown in my face.

It was a man that was approximately seventy, with his fifty-seven year old wife.  They had brought his sister to her appointment.  The entire time I was sitting there, his wife was talking endlessly and it was obvious that she had some type of mental problem.  That alone, made me feel bad.  For some reason, he started talking to me.  I think he felt like he had to explain her behavior, which of course, he did not.  His story absolutely broke my heart.

When his wife was in her mid forties, she was diagnosed with Alzheimers.  UGH ~ I felt so sick and so sorry for this poor man.  He was the sweetest guy. I asked him if he has help at home and he said that he did not.  This woman is so far gone and advanced with this disease.  He cannot take his eyes off of her for a second.  She was bilingual, but no longer remembers English. I asked if she watches TV and he said no, but he would like to.  He cannot since she talks incessantly.  I never knew that nonstop chatter was a symptom of Alzheimers.  She literally never stops.  He said that there is help available for people in his position, help coming in to the house, etc.  Unfortunately, both he and his wife are on social security and they are considered to have too high of an income to qualify for the help....such a joke.  He was also saying how hard it is for him, just to keep her expensive adult diapers stocked.  His car is always equipped with anything they might need in an emergency, since she has to be with him if he has to leave the house.  If only I could go to his house and sit and talk with him and give him an outlet to vent....on the other hand, I guess the last thing he would want is another talker stopping by...Oooohh, I hated to see them leave without offering to help them in some way....just broke my heart...and, I was ashamed for all the times I had sung the blues. I cannot get them out of my mind.  It is people like this, that I would love to help in some way.

Jimmy and I went to Big Bear for salads tonight.  I couldn't cook after coming home from Miami.  Big Bear is next door to the best hair colorist....ever!  When we were walking to the car, I noticed that Lou's lights were still on.  Being sick, I haven't been back to see him in almost three years :(.....I knocked on the door and caught him before he left the salon.  I love Lou!!!  It was such a huge treat to see him and give him a big hug, then another, then another...such a happy surprise!!!  Sooooo.....

...this day had highs and lows, which is better than no highs at all!  I'm really not doing good, but wanted to write about today....the good, the bad and the ugly hair.

Good Night Gracie~ 

Road Trip...

I'm sitting in the waiting room of my neurologist's office, at the University of Miami. These appointment days are always so hard, physically. I dread them!!!! Tomorrow I have to come back for two more appts, it will be horrible.


Okay, I need some birthday candles to blow out, because I have some wishes. First, I wish doctors made house calls, preferably at the same time so they could "discuss" and stop contradicting each other. If I get a second cake/wish, then I would love to go to my appt's in a chauffeur driven limo, with plenty of space to put my legs up and my head down......


....... Okay, the doctor called me in and abruptly pulled me from my birthday candle daydreaming. I'm now home in bed... Hallelujah!!!!!!!!!!! Can I hear an AMEN?!?!?!?!


Today was such a bad physical day for me. Having to do the Miami trek was the worst ... unfortunately, I think tomorrow will trump today. I am too weak and in too much pain to walk more than room to room in our house. The extra walking at UM was just too much. My balance was horrible and my legs got so heavy, it was hard to put one foot in front of the other. I have to say that my neurologist's office is the one place where others do not assume I am drunk/drugged, because we are all in the same boat....the Titanic... J/K... Tom Sawyer's raft...


I usually don't go in to too much detail about my appt's, but in thinking of all the sick readers of this blog, I'll throw some current information out there. Every once in a while, I think it is good to open up about my issues ... considering that this is what the blog is about. Like I have said in previous posts, I want the chronically ill to know that I do identify with them.


As sick as I am today, it was a good appointment and worthwhile. I have many issues, but this neurologist is only focusing on my leaking spinal cord fluid. Once he gets a handle on this, he is going to get back to the MS concerns, with the elusive lesions that are needed for a diagnoses. The suspected MS component is by far the least of my concerns....both regarding symptoms and the fact that there is no treatment for PPMS. It can take a really long time to be diagnosed, especially since they are thinking primary/ progressive MS. At this point, I do not have an MS diagnosis and my other issues are more concerning. We'll get that figured out eventually.


I was under the impression that the leaking fluid was not a concern (this is where my son Chris would say "and you got your medical degree from where????") anyhooooo, my doctor said that he suspects I am leaking a good amount. Still not being concerned, he then told me that it can kill me....whaaat??? Okay, he now had my attention. He said that if my brain isn't sitting in the fluid, it could rupture arteries around my brain and some other things. I do know that people can leak fluid and never know it or have problems.  Guessing my doctor is basing his concern on my test results and symptoms.



I have a few more tests to do, then it would be on to the neurosurgeon.. ..draaaaaging my feet...literally and figuratively.



Back to the spinal cord fluid issue.  My doctor said that he has another patient with the exact symptoms as me, with the exception that she has to be brought in to her appointments on a stretcher...UGH!!!  He did say that this is a postural issue.  So, along with my autonomic dysfunction which causes my blood to drop to my legs when I am vertical, my csf leaks also occur when I am upright. 




This has shifted to priority for now. I am having a special MRI, which would measure the fluid around my brain. Also, he will be looking for MS lesions at the same time. I was surprised that this MRI, of only the brain, will take close to two hours :(. I have had countless MRI's over the years I am so beat up by the time the test is done. In the past, any lasting longer than an hour, would have been for more than one area. My problem is lying perfectly still for such a long time... It destroys my muscles and I have to be helped back to the dressing room...even though I pre-medicate with Vicodin and Xanax.


Tomorrow, I have an appointment with my immunologist, which is another major contributing factor to my overall poor health, due to my seriously compromised immune system. We have a ton of blood work to go over. This will be an important appointment too. Immediately following is an appointment with a new pain management specialist.


I can't believe how many details I am leaving out. I think if I really delved in to all that is happening to me medically, you would all think ... Really?????? No, reeeeaalllyy????? I can never list it all in one post, because it really is hard to believe.....so, wanting to appear credible, I will give snippets from time to time.


As most of you know, I have a second, more private blog. I limited it to those that are also very ill, as well as others that have been to hell and back for various reasons. I loved going to that blog on the rare occasions that I really needed to let it all hang out. It was a great, safe place to talk about things that I wasn't comfortable talking about on this blog. Unfortunately, I found that it popped up, simply from googling my name. Not feeling so safe anymore, I deleted all the posts. It was entirely too personal to be so public. I might start it again with a fictitious name.. Cathy Springsteen perhaps???? 


I'd like to think of something that I am grateful for, before signing off. The hard part is picking just one! I'd have to say that it would be the super fun third birthday party for my sweet Gabby! It was the best and we all had a great time!!! The kids are too precious for words - little bundles of love! A nice thing about writing this blog is that I wouldn't have otherwise stopped to think of something to be grateful for today... :)


Even though I am writing this in bed, this is still too much. If I can, I'll write tomorrow after my appointments.


Hoping there is a limo outside tomorrow, to drive me back to Miami...


If you know my mom, please don't mention my blog to her....thanks..not even that I'm still writing...very important to me..


.

Blast From The Past..

Last night we had the best time...screaming laughing best time!!  For those who know me, you would also know my friends Rick and Debbie.  Deb had to come down for business in South Beach and we got together last night.  It was electric I tell 'ya, it was electric!!! (in my Regis voice)  Rick and I met the summer between fifth and sixth grade down Long Beach Island, and have been friends ever since.  Debbie came on the scene when I was sportin' my painter's pants in 1975, also down the shore.  I haven't seen Rick in approximately five years and it has been two for Deb.  


We went to one of our favorite restaurants.  It is very close to our house, which is always a help.  I really didn't want to bring my transformer wheel chair, but after a short while, Jimmy brought it in.  Excuse me, in case Rick is reading this, I meant to say SAINT Jimmy...I'm happy I didn't marry a guy named Bernard!  The chair was worth its weight in gold and completely saved the night.  I was able to fully recline.  Without it, there would have been a tearful ending to a short visit.  It was still a tearful ending, but for different reasons.  Unfortunately, when it was time to say good bye, it was really time. Those that know Rick and Debbie would understand how insanely fun last night was, and for those that don't, there are no words.  I am so happy :)


Back to my regularly scheduled blog....Last week, I was talking to my friend, Marie.  Marie broke her back in December.  Since then, she has been in horrible pain.  The verdict is still out on how much improvement she can expect.  We are hoping for some good news this week.  Even though it has been just a few months, she has been dealing with many of the same issues that I have been going through for the last seven years.  She finds it unbearable to be in so much pain and having to spend endless time in bed.  Marie is unable to continue working and can't imagine living this life, if that is what lies ahead. It is like her life, as she knew it, has vanished and couldn't find a glimmer of light.


I was so happy that we talked about all of this.  Needless to say, I understood every single word she was saying.  It is unimaginably surreal....unimaginable.  While she was saying that she wouldn't want to live this life, I dug down deep to think of special moments that are magnified so much more, when living this chronically ill life.   It is kind of like a blind person having a stronger sense of hearing.  While being chronically ill, and expecting nothing but the same day after day, the occasional bright spots, are so, so much brighter than if we weren't sick.  I was telling Marie that it could be as simple as fraction of a second laugh out loud moment.  


A few years ago, I was in bed watching "Everybody Loves Raymond".  Something funny was said and I "laughed out loud"...alone in my room....looking around, wondering where that laugh came from...couldn't have been me...or was it?!?!?  Hey, I laughed out loud and it felt AMAZING!  I'm sure it was a rough time for me, but that sudden burst of laughter was like opening a valve to release the pent up pressure and sadness.  It was just perfect!  Now, that was just a TV show....you can only imagine how I feel when I see my adorable grandchildren!!   Tack on Rick and Debbie after so many years...WOO HOO! 


I posted a week or two ago, after Jimmy and I went to Bonefish Macs for dinner.  For some reason, when we go out to dinner, sitting across from each other talking, I always end up crying. I guess it takes being out of the house for me to open up.  Anyway, I was really depressed.  We were seated outside, and a woman that was seated next to us lit up a cigarette.  In the middle of the water works, I couldn't help but laugh.  I had seen an episode of "Cheers" earlier that day, and there was a funny scene between Woody and a customer that was smoking..."Cheers" is hysterical!  Now, that was an instance where I was soooo low...limbo low...and that sudden thought of Woody, of all people, turned my mood completely around.  It happens without warning, just be assured that it will happen again and again.  In fact, I could use someone to remind me of this now and then too.


Anyway, I completely get it and understand how chronically ill people just don't want to face another day.  I feel that way often myself.  Luckily, there are intermittent moments, or hours of the valve being released.  I guess we have the one up on well people...they don't know just how sweet the sweet moments are...hoping I don't have cavities...


My friend Vicki asked me to discuss days that she refers to as "grieving days"...which are kind of the flip side to what I have been talking about tonight.  Nonetheless, they are real and valid.  I'll write about that next time.


Wishing my sick friends a laugh out loud moment today...


Last, but not least...

HAPPY, HAPPIER, HAPPIEST BIRTHDAY TO 

DINA GINGY ELLEN

XOXOXOXOXOXOXOXOX

Words With Friends...

...oh, and I love playing Words With Friends.  I've had an especially rough time lately, and I have to say that playing WWF has been a lifesaver.  It is such a fun distraction.  When I am playing, I get so in to it that I forget about the things that are so upsetting.  For the most part, I have been having marathons with my son Phil and his wife Laura, along with my great friend that I never met, Marie.  Marie even played with me, while on vacation in Hawaii...that was funny.  I get completely in the zone .... my twilight zone...so much fun. 

I have been having such a hard time physically/emotionally lately.  Last night, against my better judgement, we went to a Key Westy type of restaurant, near the beach.  It is the kind of place that makes me feel like I just flew down from PA to have dinner with the rest of the tourists.  I love the vibe!  Anyway, I wasn't up to making dinner and was thinking we would just order in.  Jimmy brought up Bonefish Macs and I (pun intended) took the bait.  

At first, it was great, since we sat outside and the weather was absolutely beautiful.  Before long, I knew I should have stuck with my gut feeling and stayed home.  UGH....then came the water works.  This scenario happens almost every time we go out to eat.  On one hand it is so great to be out of the house, enjoying the beautiful weather and fresh air, then on the other hand, it gets so depressing when I begin to dive.

It is funny, because I posted that I was at this place on FB.  I had never done that before, but thought "hhhmmm, I'm someplace...and, I'm telling everyone".  I was surprised to see some comments and "likes" under the FB post. It made me laugh!  Carol Schaeber said to have a dark beer for her...the funny thing is that I did have a very dark beer....diet root beer to be exact.  I wasn't feeling well enough to have a drink drink.  Laurie's and Gina's posts mentioned having drinks too....I'm such a dud these days.  So, my friends, that is why when I am out and feeling pretty good, I make up for lost time and order a Long Island Iced Tea :)

While I was there, and diving, I could feel my head fill up with pressure.  So intense!  It was either from leaking spinal cord fluid or my autonomic issue, which causes the blood from my brain, heart and lungs to drop to my legs when I am vertical.  The pressure was heavy and unlike a headache.  Once we got in the car, I had to recline the seat.  I was wishing I could stand on my head.  Just having the seat reclined, I could feel things shift in my head.

Going out is bittersweet. I am just going through a phase where I am so sick of it all.  It is unbearable being shackled to this house...I wish I could find the words or an analogy to really describe what this life is like.  However, I feel like I can't write the previous sentence without saying that I know there are so many that are much, much worse off than I am....I have to keep it in perspective.

I am so ridiculously behind in returning phone calls and keeping in touch with all the amazing friends I have accumulated in my life.  It is yet another horribly frustrating aspect of my mess.  Feeling so sick, I cannot pick up the phone and sound at all like myself...or what myself used to sound like.  When I do, I call.  For those that I catch up with once in a blue moon, I know that I do sound like my old self.  That is the reason I call at those times, and those times only. Other than that, I am living in a heavy brain fog, with insane fatigue and a big fat ETC, ETC, ETC...  You all know who you are, and I am so sorry that I have been off the radar.  

I'm happy to say that I don't have any doctor appointments this coming week. My to do list consists of birthday shopping for my unbelievably adorable little Gabby (no, she wasn't named after me)...she is going to be three this month. Such a cuddly little dollbaby...my Gabby!  I'm happy I am ending on such a sweet note...now I can look forward to sweet dreams....good night... 

THIS JUST IN.... my playlist is playing Adele's "Someone Like You", which is one of Gabby's favorite songs.  I babysat for Gabby and Maks (1 1/2 yrs.) one afternoon last week.  Gabby wanted to  play this song on my phone.  We were on the sofa and Maks was molded in to my body on my left side and Gabby was doing the same on the right side.  I was singing along as loud as I could and they were singing with me...we were laughing and singing, they were staring in to my eyes, and Gabby was singing with her nose touching mine....it was a precious Kodak moment that I won't ever forget...uh oh, here come the tears again....but sweet, happy tears.... XO to Mimi's angels..