whatever

I don't know why I'm so freakin bored out of my mind these days, except that

1. I don't have  a car
2. I don't have a job
3. I don't have the desire to do anything

So I sit at the computer and play farmville or yoville, read about my friends going into transplant and worry about them, or sleep. none of these things are very productive and I have to ask myself, what am I doing with my life? All those years I fought to live, literally made my medicine from scratch, fought against infections, had to wear ice at my hip 24 hours a day, and now that I don't have any of those things and I'm free and untethered, what am I doing with my life? Recently I heard a song that had a few lines that stuck in my head, Am I living to die or dying to live? or the other way around. whatever.

but whatever shouldn't be enough. it never was. I'm not sure if I'm falling back into depression although it feels like it. Whatever's, are they enough for you? Or do you strive for more than Whatever's?

oh my aching back!!!

I have been getting really bad back aches for many weeks, almost 2 months now. I went to the doc in Maryland before I came to California and was told I have Sciatica, a nerve that is inflamed. The pain radiates from my lower back to my legs if I stand for even 5 minutes. It's very very uncomfortable and inconvenient!

Any little thing I try to do, from cooking to cleaning, to anything fun like walking, I start to be in pain after a few minutes. The doctor here gave me a pain killer that honestly doesn't even touch the pain.

We have been putting up the Christmas tree here and I have been putting up the decorations, since I can not stand for more than a few minutes, most of balls are lower on the tree since I'm sitting.

What a pain in the back!!!

1st ever South Riverside Support Group Meeting

Our Support Group Meeting went really well today! We had 6 people in total including me! We had a very nice Meet and Greet where each person got a while to share about their PH journey. We had a nice lunch of sandwhiches, veggies and dip, macaroni salad and different desert breads. Our next meeting will be held on January 21st and I can't wait!!!

Wrapping Christmas Gifts & Back Pain

So most of today was spent wrapping Christmas gifts. not that I bought any, but I'm wrapping them for my mom. I have some gifts to give but those were things I already had, milk glass, angels, etc. its been fun spending time with mom, and wrapping gifts with her like we used to when the kids were little.

I have had to take breaks every now and then because of my back. I have siatica, nerve pain in my back that radiates down to my legs. Really though, all I have to do is get off my back and I'll be ok... it's just getting off my back means either lay down or sit down. I thought for sure this siatica would be done by now and I'd be able to do all the things I used to do. Isn't it enough to have Pulmonary Hypertension, Pan hypopituitarism and all those other little things such as raynauds, gerd, ibs, etc? now i have back pain... yuck

I'm so mad at myself!

So I have found a new PH doc who requested my records from Dr Girgis at Hopkins and Dr Frost at Baylor. Before I left D.C. , I requested these records from Hopkins and I have them on hand. I went to make copies of these records not knowing how many sheets of papers there were or how long it would take... long story short, it took almost an hour, 128 pages and 12 dollars later, i was/am so mad at myself!!! I was going to take the records to my new doc and ask them to make copies but like an idiot, i went a head and did it myself.

I know that $12 isn't a lot of money but when you don't have a job, you still haven't received your disability check yet for the month, it's a LOT of money! so needless to say, I'm pissed at myself. at least I don't have to mail the documents... when I go to Lo's house on Tuesday, I'll drop them off it's on my way off the 91 freeway in Loma Linda. argggggggg

Long Time no Blog

Yes I know it's been a while since I posted anything on here, and I apologize about that. Blame it on the Pulmonary Hypertension. I forgot where this blog was and even how to get on, but when I finally figured it out, well... I'm glad I did.
So much has happened since I last posted.

I have moved from D.C. and am living in California with my mom and daughter. My oldest daughter decided to stay in D.C. and my youngest daughter is still in Texas with her father.

I'm looking forward to Thanksgiving, going to spend a few days in the O.C. with my sister Lo and her family. (Lo is a nickname). I'm hoping to spend time with a younger sister while there and my godmother too! I'm not sure who I can or can not see... We'll see.

So much has happened... and so much hasn't happened.
I'm no longer depressed, well, no longer as depressed as before, and I'm not allowing myself to wallow in my self pity. I do still have days of sadness but it doesn't last, thank God! and my good friend Rob comes down to the area (an hour and a half drive) to visit. We went to Oceanside for the day and had a great time! We went to the Mission down there and then to a movie. afterwards, we went to the beach to watch the sunset. It was so amazingly beautiful and reminded me of the good times I used to have with the X. good times that never lasted. oh well. it was beautiful and so nice to watch the sunset on the pacific!!! I enjoyed watching the surfers try to catch the waves as they tumbled overselves. It did get a bit chilly as the sunset and I was thankful I listened to my mother and brought a sweater.
I really hope to be able to go to the ocean again soon!! My favorite thing to do now, thanks to my bff F. is to let my feet sink into the sand and let the waves crash over me!! such an awesome feeling, feeling the strength of the ocean, the salt in the water, and coolness of the water, wash over my body! I do not like being knocked down. lol. owwwies! :-)

can you tell I LOVE LOVE LOVE the ocean! I'm at peace there, and peace is a hard thing for me to find.

One of my daughters is in crisis right now and I worry so much about her. Please pray for her!

The worst thing IMO

The worst thing about being sick isn't the medications streaming thru your veins, or the poking and prodding they do during exams or procedures. It's not being able to live your life the way ou want to. For me, that's the worst thing. Yes, I'm better off than I ever thought I would be, and really, on good days, I feel like I'm not even sick. But those good days do come to an end, eventually. For me, I mostly have good days, until I get so tired that i can't do anymore.

I get tired very quickly. I "crash" and immediately need to sleep, or sit down. Yesterday, I was attaching something fun to my desk top at work and had to be on my hands and knees. It was the middle of the day and I was doing well all morning. When I got up off the floor, I was so tired and out of breathe, it really is an awful feeling.

My sister told me recently that women with heart disease who do things where their bodies aren't fully extended, such as on your hands and knees, or bent over to sweep or mop, clean the tub or vacuum, are more likely to  have heart attacks. I don't know where she got her information, but now I'm not allowed to do any of those things. Don't get me wrong, I'm not a neat freak like she is. I'm not even CLOSE! :-) However, if I want to do something, gosh darn it! I need to be able to do, and not worry that my day will be shot because I'm too SOB.

Any kind of hill or stairs makes me SOB and makes my heart beat almost out of my chest.

Chest pains are scary. Are you having palpitations? GERD? or God forbid, a heart attack?

wow, I guess for me, there are a lot of bad things associated with having a chronic, incurable disease.