Christmas

Christmas has come and gone. Ok, just a few days ago, but already, I'm tired of the decorations, the music, the lines at the stores, and most of all, the left overs. We didn't do a whole turkey this year, just like we did at Thanksgiving. although at Thanksgiving, I got a few turkey legs, for Christmas, we got a Turkey breast and split it between my daughter, her fiance, my grand daughter and myself. 

No no, I think most of all, I'm tired of the cold weather! We barely got snow this year, it snowed a tiny bit on Christmas Eve and a tiny bit on the 26th. The snow was on the ground for a few hours and then it started to rain. yuck! Of course, I haven't gone out in a few days. 

On the 25th, we all went out to see the White House Christmas tree and it was beautiful, but with so many people and with it being so cold out, we decided to not go around the loop and skip the smaller trees from the different states. There were just way too many people! Instead, we went to a little area where they were selling food and souvenirs and we got hot chocolates and hot dogs. yum! We tried going to Starbucks but of course they were closed... and i wanted to go to Ben's Chili Bowl (YUM!) but they were closed too. Instead, we walked to the closets metro station, felt like a forever walk down the National Mall, and finally we were at the metro station. 

Had we taken the bus instead, we only needed to walk 2 blocks to the stop. However, it was cold and we didn't know when the bus would get there, being Christmas. AND the bus would have dropped us off half way UP the hill instead of at the bottom of the hill. So it was another walk home from the metro station in silver spring. oh well.  

I have been so tired lately. not sure exactly why.. and when I want to try to sleep during the day, there is always too much noise for me to sleep. 

i'm sorry guys, I didn't mean for this to turn into a bitch-fest. 

Ellie got some awesome Christmas gifts! She got a stuffed Broby, from Yo Gabba Gabba, 
an electronic doll, an electronic tea set, a see and say,
I wanted to get her a toy laptop  but I think I'll wait a little longer. I don't want her to think she can play with my laptop when I'm not around. as it is, she likes opening the CD rom drive. lol 

I also got some awesome gifts this year ! I wasn't even expecting anything. But I got some computer programs I really wanted, a mani pedi gift certificate, a gift card to DSW, (both of which I'm excited to use!) two necklaces, what else, oh! a beautiful eight by ten of Ellie! 

It was a really nice day, in fact, we had a few really nice days over here! Spending time with Drea, Jorge and Ellie! :-)

Right Heart Catheterization

My RHC has been scheduled for this coming Monday. I'm not afraid of the Cath anymore. This will be my fourth one, and they get easier each time.
What I am worried about, afraid of, is that they will say that everything is fine, and my PH is not advancing. Let me back up for a second.

Of course I do not want my PH to be advancing. no way. But what else can this be?

Depression?
Inactivity?

My doc told me that everything is worse when you are depressed. No really? I didn't know that.

But they are testing me and soon, I hope, I'll get the referral to the rheumatologist.

The above pic is how they do the RHCs but mine will go in through the neck, I hope. that's how I've always had it done.

Change of plans

There has been a change of plans for the holidays. :( 

Carly and Andrew won't be able to make it for Christmas, some prior commitments were made. But, they will be coming out for the Cherry Blossoms in April, God willing!!! It's my favorite time of year in the district :-)

The weather is always gorgeous! Of course the Cherry Blossoms are out, lining the streets of D.C. and the out banks of the Potomac. And then to see the monuments with the beautiful pink petals everywhere, amazing! 

There's so much we can do while they are here. Of course the monuments and museums are the biggest draw. Not knowing Andrew well enough, I'm not sure exactly what he will want to do, but I'm sure some night time dancing will be in order for them. :-) 

Maybe they would want to go to an amusement park, there's one that by public transportation, is only 2 hours away, which really isn't that bad. I think it's a 6 Flags, but I'm not sure. 

But best of all, I have written to my congress person requesting tickets to go to the White House! I tried to get tickets for Luzy but there wasn't enough time. You need to do it months ahead of time, and I wasn't even certain she would be able to come.

So, it will be Luzy, Drea, Ellie and hopefully Jorge too. I will totally miss Carly and Andrew but, it is what it is. 

EXCITED!!!!!

My kids are coming for Christmas!!! For the first time in several years, God willing, I'll have my three daughters and granddaughter here with me! But excited but worried too:

• Will they get along?
• Will they have fun?
• Will there be enough time and $ for everything I want to do?
• Will I have enough energy for everything I want to do.. everything THEY want to do? 

This is also only possible if Carly and Andrew can get the time off of work to be able to come. Even if they can only be here for a weekend... I'd prefer much longer but of course I understand!!! 

I'm so excited! Please GOD: let them get the time off! Let them get along!!! Let me have energy to spend as much time as possible enjoying them!!! 

EXCITING!!!!!

SO much

There is so much beautiful in the world! From babies to the mountains, from animals to the sea and everything in between!

I marvel at how God created us. I am in awe at how we can be, one person, in ourselves each of us, individual. So frikin many of us, and so individual. There is not  a single person on this planet exactly like me. Someone may look like me, may have a few of my characteristics, but not one single person that is exactly me. That blows my mind !

Something else that blows my mind, the universe. The beauty of the heavens and the stars and the planets. WOW. How God knew exactly what to put in the heavens, blows me away. Shooting stars, asteroids, the Aurora Borealis, so beautiful! so gorgeous!
I'd like to see and witness and participate in everything that the world has to offer. I'd like to, one day, venture out, on a good PH day, and just wounder about.


But on the same token, there is so much pain in this world.

• Broken hearts or relationships that failed. 
• Depression and mental illness, even though it's in our heads, it's totally real to us, and yes, I'm including myself in thiat. 
• Diseases
• War   

Just to name a few.

And then there is the pain inflicted on ourselves and others

• cutting
• burning
• pulling hair out
• bulimia
• abuse from loved ones 

Does the beauty of this world out way the pain in this world? Is it really worth it? To suffer depression or disease, or abuse and broken heart?

Missing....

I'm missing my kid's babyhood. The years from when they were first born, until they started acting out. for one of them, it was A LOT sooner than the other two. But my daughters were and always will be ALWAYS awesome!!!
We crafted together, we sang together, we colored, play-do'ed, did hair and nails, had tea parties. We loved to watch tv shows that had music such as Barney; Sharon, Lois and Braham; and Lamb Chop, for example. I miss these times.

I love love love how they have grown and matured. I love love love how they have blossomed into their own persons, how they are striving for not just themselves but for their families.

But still, I miss it.

But now I get to watch my grand daughter grow up! :D :D :D

So this made me cry....

Long ago, when my kids were little, I belonged to a group called MOPS - Mothers of Preschoolers. At every meeting, there was a lunch, prayer, sometimes a bible study, and someone always sang. Well, they asked me to sing after their singer moved away. (this was on base, camp Pendleton in California) So when I sang for the fist time for them, it was for the Christmas party. And I sang O Holy Night. When I was done and I looked up, people were openly crying. after Santa came to give presents to the kids, people came up to me and told me how my singing touched them and moved them to tears. I was so touched. I miss singing. I haven't sung in so long! and this just reminded me of that.  For those of you that are "healthy" cherish it. you can conquer the world, or at least it seems like that for this chronically ill person!

can't believe...

I can't believe how fast this year has gone by!!

Here we are, the last few days of November, and then December will come and then... 2013.

Yes, we are supposed to celebrate the new year.
Yes, we are supposed to be joyous that we survived 2012 and the "apocalypse" didn't hit us.
Yes, we are supposed to be grateful that we lived to see another new year.

Especially someone with a chronic condition.

But actually, and really really honestly, I'm afraid of what the new year will hold.

Will I still be in too much pain to be able to work?
Will I still be sitting in front of my laptop morning, noon and night?
Will I still be draining my sister?
Will I still be a burden on my family?

These are just a sampling of questions I have been asking myself.
Am I stressing? just a tiny bit.
Am I freaking out? just a teeny bit
Am I anxious? just a bit more than that.
Am I lying to you about how teeny tiny i'm stressing, freaking, anxious I am? yup! 

This too shall pass?

This too shall pass? 

This was on a good friend's FB page this morning. I wanted to respond, Really? When? Because I'm getting tired of waiting. Getting tired of waiting for things to move on. Getting tired of the pain. Getting tired of new symptoms popping up nearly each day.
I love my friends, I do, but without knowing it, they say things that set me off into a rant. And they mean well you know?

I had another dream last night. A recurring dream. I'm in a fancy hotel, or office building, or just the apartment building, (changes every time). I get into an elevator and that elevator jolts and kicks and spits and I'm falling, falling, falling. In my dream last night, I'm in the elevator falling for so long, I start to sing, and someone hears me singing and shouts out to me, (In dreams past, I have shouted out to people but no one can hear me).

No need to say " I wonder what that dream is all about? " I know it means that I feel like my life is on a downward fall. I have nothing in my life right now but my family and friends. what I mean by that is,
no job - no money - no sense of achievements - 
and for me... that's enough to send me into a depression. It's been this way for many months and I feel the effects of it. Not getting out of bed, not wanting to eat, not having energy to cook or clean for myself.

but you know what.. this too shall pass. right? it's supposed to!

Scary Dreams!!!

I had several dreams last night that I can only say were a direct result from sheer exhaustion!

The first dream I had, well, I have to give you a bit of background to.

For the longest time, I shopped. I don't mean, I shopped for things I needed. I don't mean I shopped for things the family needed, or Christmas or just groceries. I mean I shopped for "sport" I shopped when I was bored, when I was sad. I shopped when I was happy or mad. I shopped to shop and loved the thrill of purchasing with a credit card or writing a check. If I had checks in the check book, I had money in the bank. If I maxed out a credit card, I opened a new credit card. When my X and I bought a house, we had a line of credit opened up for repairs to the house, it was built in the 1920's and needed work done. It was a beautiful old house! Well, I used all that credit up on shopping. At one point, my kids had over 30 pairs of jeans each. and that doesn't count the tops, the shoes, the under garments. I never shopped for myself, unless I really really needed it. And, we never shopped at high end places. It was always Walmart or Target. When a new place opened up, I would WANT to shop there, but never really did. I worked at department stores so that I could get the discount. I would also, for the most part, get only clearance items. But I still was over $10,000 in dept.
Now, divorced and loving where I live and getting to enjoy my grand daughter all the time ( I miss my two girls that are still in Texas LIKE CRAZY!!!! ) I can't do that. After we sold that big beautiful house, my half was used to pay bills, creditors, medical bills, etc. I had less than a thousand dollars left over afterwards and was able to get myself a laptop.
So I don't have ANY credit cards, except for my ATM card, which is also a VISA. And I only use checks to pay rent and to pay for acupuncture. I get acupuncture twice a week and pay for the sessions all at once at the beginning of the month.

SOOO The dream that I had last night... I went on a shopping spree. Shopped until I dropped!! Shopped and shopped and shopped! and man did it feel good to shop, until I got the bills and started. And when I woke up from this dream, I was shocked that I fell back into that cycle of shopping and being depressed because I shopped, and shopping because I was depressed..again. THANKFULLY... it was nothing but a dream! PHEW!

My next dream needs a bit of background info too.

Flashback a few days ago...

If you've been reading my story, you'll know that i have been in a lot of pain lately... and more tired than normal, etc. So I had the ANA test to see if I might have CREST and now I"m wondering if I have Fibromyalgia. So that's been heavy on my mind.

So in my dream, I was moping around depressed and worried. People came up to me and started talking to me,  trying to get me out of my mood. I wanted nothing to do with their cheerfulness, so I walked away slumped over. Lots of people would come over to me and try to make me smile, some I know, some I used to know, but mostly people I had never before seen, (or maybe saw them in passing at the grocery store or something). Funny how the mind works isn't it? So finally, I went to my specialist and when I started complaining about all my symptoms, he said "whatever" and walked away. I was flabbergasted. Maybe it was time to find a new doc? Could that be what my dream was telling me?

I have been stressing out over money. How can I pay this bill? How can I pay for that? Forget about Christmas presents! no way ! So I have been stressing about that. And I've been worried about my health, more so lately.

Maybe my dream of my shopping addiction coming back is a way to remind me not to spend any money for anything. Crafting here I come :-) Maybe I'll make some Christmas ornaments as gifts?

Could it be... Fibromyalgia?

This is is from a Facebook page called Fibro Colors.  And I'm wondering if I might have Fibromyalgia. I have digestion problems - IBS , muscle weakness, with pain and tension. I have chronic fatigue, which could very well be from the PH or just pushing myself. I have anxiety with memory loss, once again, could be from PH , or depression. I had TMJ long ago, in the late 80's but do find myself grinding my teeth frequently. I mean, there are so many symptoms on that image that I can say, Yes, I have these things. Honestly. I'm not being a hypochondriac  or anything. I know myself. it would explain a lot! 

Doctor's visit from HELLLLLLLLLLLLL

I called on Friday to schedule a doctor's appointment with my PCP - primary care physician, aka family doc. I go an afternoon appointment for today, Monday.

I get there about maybe  7 minutes late. I had fell asleep at noon and woke up at 1:45 and needed to shower and change, and ran out the door 5 minutes before the actual appointment time. Thankfully, she's about a 5 minute walk, i must have walked slower than usual.

So I get there and wait 30 minutes to be called in. Seriously? the entire office is empty except for me. I get my vitals, weight was down by a bit, tiny bit, and all other vitals are good.
As I'm getting my vitals done, I notice the young lady doing them is a student. I asked her, and she said she was in her  third year. So I asked if she had ever heard of Pulmonary Hypertension, which she had. She asked me why I had asked and said that I have it.


I get taken into a room and get a flu shot. and wanted to send me on my merry way. NOPE! I have things I need to speak to the doc about.  I made a list, as I always do, on things I need to talk her about, she comes in for about 2 minutes and gets a call and has to leave. I was upset. Duh!
Obviously I'm upset right? So the student doctor, who was still in the room asks me what's wrong and I said, every time, I need to talk to her and she's running away to someone/thing else. She must have told the doc that because after i got my blood work, I was told to go back into the room. She followed me in and I said to her,

I have ten different diagnosis. I have 2 chronic diseases that have dramatically changed my lifestyle and way of living. I don't need my hand held, but I do need more than 2 minutes of your time.

Apparently,  since all I said was I needed the flu shot, med refills and blood work, they put me in a 5 minute spot instead of a fifteen minute spot. So I need to be more specific when I call to make my appointments.

Then, as I was walking out, the Phlebotomist says that she can't code the pregnancy test I have to take each month in order to receive my life sustaining medications. Which has always been this way. So, she's trying different diagnosis codes, and none of them work. I called my specialist Dr Ruiz, and his nurse gives me several codes to try and none of them work. I even called the specialty pharmacy and they didn't have any codes. When I get home, I called Medicare and they can't give me any codes or any information  but I should have the lab call medicare and ask for the provider line. DOH! isn't that what I told her two or three times? she refused to do it. 

As I was walking out of the doctor's office,  I said,

It sucks being disabled. the doctor responded by saying, "I understand."

NO! No you don't!
You have more than $10 left at the end of each month!
You don't live in your sister's living room because you can't afford a place of your own.
You don't deal with pain, constant doctor's visits, test after test after test.
You don't deal with the feeling or is it knowledge that you are a burden to your family.
You don't deal with survivors guilt because your friends are dying all around you, but you are still here after so many years.
You aren't... oh man! i can go on.
that got to me. you know? maybe it was frustrations of the day but that really really got to me!!!

I'd go find a new primary doctor but she's only 5 minutes away... just needed to vent about this doctor's visit from hell!!!