Charles, my Pride and Joy, in FL at Sunrise

Charles, my Pride and Joy, in FL at Sunrise

Thursday, November 27, 2008

Happy Thanksgiving

Today is the day when, as a nation, we are reminded to be thankful. There are many things I am thankful for. Since acquiring Pulmonary Hypertension (PH), my perspective of thankfulness has changed dramatically. I am not saying I was unthankful before. It is just very different now.

To understand, a little history is necessary. Bear with me, we will get to the point in a roundabout way. I was born into a "traditional" family in TX. My Grandparents on both sides as well as aunts, uncles and cousins all lived nearby. Not the same neighborhood but within easy visiting distance. When I was 8, we lost my dad to a tragic accident. Mom remarried when I was about 11 to a military man. We moved out of state shortly after. He was not what he portrayed to all of us before marriage so it only lasted a few years. I moved numerous times after the age of 11. The other family members also started to move to various parts of the country. I ended up back in TX and had my son in my early 20's. We lost his father when was 10 weeks old. I finally "settled" in FL after that to be near my mother and stepfather (who I call "Dad" ~~ he earned it!) This is where I went to school to obtain my nursing degree. I stayed there for 11 years before moving to MO for family reasons. I still have friends in FL. I have been in MO for 8 and 1/2 years now.

My concept of home has continued to evolve. Where is "home"? Is it a geographical area? I feel I have many homes. TX holds a special place as home even though I am not there right now. I have family there. I one day hope I can live closer to them. FL will always be my second home. It is where I really "grew up". MO....this is more difficult to define. This is the place where my very life has been tested. This changes your perspective. A heart problem almost killed me in 2004. Shortly after that, I found out I have Pulmonary Hypertension. Even as a nurse, I knew next to nothing about it. So, being the endlessly curious person I am, I went online to learn about it. At first, I found info in medical literature that told me I might have several years left to live. I was devastated. I was only 38. How do you tell your 16 year old child that he would be left with no parents before he was even an adult?! Fortunantely, I found more current info that gave me hope. One of the few information sources I recommend now is the Pulmonary Hypertension Assocation. I educated myself and advocated for my own treatment. I am now 43. So much for those old statistics! I have translated my knowledge into my nursing practice. I help other people educate themselves and get proper treatment before they end up as sick as I was/am.

So what am I thankful for???

I am thankful to be alive. To open my eyes every day and have a chance to live. I am thankful when I can put on my uniform and go to work. To see the change of seasons....beautiful sunsets, flowers blooming, fall colors, fresh snow.....

I am thankful when I can get thru a whole day without chest pain. (This doesn't happen often.)

I am thankful that I am here to see the good young man that my son has grown into. He is a loving son....a kind and gentle soul.

I am thankful for my mother. She taught me to be independent, a free thinker, adventurous and to value all persons equally. She believed in me even when I doubted myself. She is the strongest woman I know.

I am thankful for my Dad. He came into my life at a time when I was difficult to love. He must really love my mother! I did not permit him to be a part of my life until I was an adult. Over the years, he has been everything a father should be. I am thankful to have a second chance to have a real father.

I am thankful for my PHriends. They understand me on a level that only a phriend can. They give me strength to continue on days that are not good. They are there to celebrate in good times. They are phamily.

Yes, I miss parts of my old life.....all of the physicially demanding things I used to love to do. Can you be thankful for an illness that makes it impossible to walk up stairs without gasping for air, to hike up mountains, to breath at night without oxygen? Well, without it, I would not be the person I am today. I enjoy the simple things more. I love more deeply. I live each moment as if it is the last.

I am thankful for today!

Saturday, November 22, 2008

The Sun is Shining, Kinda

Howdy everyone! I woke up this morning to the sun shining. There are some clouds floating by now but it is still nice (and brisk) out there. It is about 37 right now and is supposed to get up to 45. That would be 10 degrees warmer than yesterday. Our low yesterday was about 15! Unfortunately, I did not get any snow. I love to have snow! This is one of my favorite times of the year. There is a stark beauty in "naked" trees against the skyline. Here, the sky can have so many shades of pink, purple and blue all at the same time. The nighttime skys are fabulous as well. My adjustment from city dwelling to rural living was a significant transition. One thing I like better here is the stargazing. There are alot less lights here to dim the view. Some nights the sky appears so full of stars that it reminds me of one of those Light Brite things I played with as a child - with all of holes punched out but without the colored pegs put in. If you drive about 10 miles north of where I live, there is a scenic pull over. The only lights here are the few country houses in the valley. It makes you feel like you can reach out and touch the stars.

As you may be able to tell, my mood is better this time. My absence from blogging was a healing time for me. The sinus infection is gone. Yea!!! Today I need to catch up on neglected chores. My desk is overflowing with papers to be sorted thru and filed. Maybe, I will also get that chili made. It sure is a good day for something warm and hearty. Ohhh, french bread! I haven't made that in ages. Doesn't that sound like a good combo. Yep, it is decided. Alright yáll. I am off to accomplish great things.

Take care, ali

Sunday, November 16, 2008

Sharing

This time of year sharing is not necessarily a good thing. We have seen alot of people in clinic with nasty respiratory infections. Well, they shared. Not nice! I don't care what your mother told you....keep it to yourself. Anyway, the point is, I came down with a sinus infection. It started with the runny nose/watery eye thing. By Wednesday, I was going to bed early and struggling to get up on time. My sinuses were congested and my face became tender. My breathing started to take a downturn and the sats went with it a bit. By Friday morning, I knew I was losing the battle and needed to see the doctor. You know it is real convenient when you work for the doc. I saw her in between clients. Got antibiotics at lunch and managed to get thru the rest of the day. Boy was I tired. I slept until 0915 Saturday morning when my phone rang. Unusual for me. Today was even later, nobody called! I better make sure my 2 alarms are set for work tomorrow.

I was, of course, ready for football at noon today. The Bucs won....Whooo Hoooo!! It was a close fought game. Both teams are trying to place in the play offs and mine just got closer. Good game.

The Cowboys are getting ready to kick off and I think I will watch them for Jen...I'll give you a report if you don't watch it.

I hope I have my motivation back tomorrow. I try to keep my spirits up but it has been hard lately. It's not just that I am feeling sick. Too many family/phriends are having hard times. The one foremost on my mind right now is Mason. The poor guy just can't get a break. I may feel like crap but I am not the one in ICU fighting to breathe. I guess I am in one of my "trying to understand it all" periods. I sure hope someone makes progress on finding a cure for Pulmonary Hypertension soon.

Well, that is all of the sharing I have to do for now.

Take care, ali

Sunday, November 9, 2008

St Louis PHA SG




Buenos Dias! These are a few photos from the St Louis PHA Support Group meeting yesterday. Don't we look like we're having fun? The lively little fellow with the scary (fake) teeth was a new visitor. He is on Revatio and as you can see, it is working. He kept us laughing frequently. He was there with several other family members who are also living with health challenges. They are a delightful family. Oh, and they own a winery in Richwoods, MO. Hmmm, our wheels started turning....sounds like a really good place for a meeting. Don't you think so?
We had a speaker, Dr Steven Baak, who is a Rheumatologist. As you may imagine, we covered a wide range of topics. I asked a few...ok, quite laughing....lots of questions. I had a burning need to clarify some things about fibromyalgia, Vitamin D deficiency and general "how do you decide" issues. He answered my questions really well. So, I think I like him:) The rheumatology field is facinating to me. They are true medical detectives!
The meeting, as I wrote yeterday, was held at a pizza parlor. I would like to extend a big THANK YOU to Actelion for providing the food and being there! I had a cod sandwich that was really good. Others had pizzas that looked awesome. They were sure chowing down so they must have been good. I used to eat pizza before tomatoes decided they don't like me (despite the fact that I have always loved them). Tomato-less pizzas just don't appeal to me. Anyway, a good time was had by all.
I hope you are having a good Sunday. I have been typing this as I watch the Jets trounch St Louis. 40 to zip at the start of the 3rd quarter. Maybe I'll switch to the Titans game. Nope, no Tampa today. My team is on bye.
Then again, I just remembered I really should go fix that nice Salmon I got at Sams' Club yesterday in St. Louis. I went shopping there after the SG meeting. The closest Sams to me is 90 miles so I take advantage of it when I am there. You can really get some nice meats and fish at my favorite one. So, off to cook I go.
Take care, ali

Saturday, November 8, 2008

Support Group

Hello Everyone. Today is the St Louis Mo Support Group. I am on my way shortly. It is an approximate 90 mile drive this time for me. Our group meets at different locations each time. Today is Fortel's Pizza Den in Ballwin. Hey Mason, hop a plane and have some pizza! I feel fortunate to be able to go. Some people do not have support groups they can get to. If you would like to find a Pulmonary Hypertension Association Support Group, click on the ribbon on the left side of my blog. Then go to the "connect" tab on the right. Or just click on the logo above.

Adios me amigos and take care, ali

Monday, November 3, 2008

MO State Capital



This is a short post to share what I did last Friday. I had an appointment with the Rheumatologist in Jefferson City, MO. The appointment went well...hopefully a med change will improve my pain control. Anyway, Jeff City is the Capital of MO. I have never been inside the state capital building. I have seen the buiding several times as I drove by and thought it was so pretty outside that I really needed to make time to visit it. I went after the doctor appointment. There were very few visitors and I lucked out by finding a parking spot near the entrance on the river side. This area of MO has lots of hills and the capital was built on one. One thing that has not improved much with treatment is that I become very short of breath walking up any incline.
So, here is a beautiful view of the capital and our change of season. Click on the pics to get an up close view. The inside of the building was even more spectacular! If you are ever by this way, stop in. It was worth it.
This is also a reminder, like we really need one by now, that tomorrow is the day for us to have a voice by Voting. I will remember those Representatives/Senators who did not support my causes and will support those who work to improve the lives of those of us affected by Pulmonary Hypertension by casting my ballot accordingly. Let YOUR voice be heard. Together we can make a difference.

Take care, ali

Sunday, November 2, 2008

SVT story

This Month is Pulmonary Hypertension Month. I have decided to share a story that is close to my heart. (I'm sorry - bad pun) I am skipping past my symptoms leading up to this story. I'll share those later.

I had a Supraventricular Tachycardia (SVT) in September 2004 that landed me in my local ER. My heart rate peaked at about 220. The doctor tried several non-invasive things to correct it but my heart just kept racing. They gave me an IV medicine called Adenosine. It stops the heart and everybody stands there, with big eyes, hoping the hearts electrical system re-polarizes and it starts again. Whew....it worked.

I asked the doctor after he fixed me how often he has people come in with this. He knew I was a nurse for this hospital and wanted the truth. He looked at me rather seriously and said "they usually come in the back door in a bag". OMG, another bullet dodged! This began my adventure into the world of my "new normal".

We tried medicine to control my non-compliant heart but it didn't work well at all. If I took enough medicine to control my heart rate to enable me to work, I would bottom out when I was lying down. I felt really crappy all of the time. My local doctor at that time was still wanting to do medical management. So, nurse ali started researching solutions. I decided the best solution for me was to get rid of the aberrant tissue causing this problem altogether. Yea, novel idea, fix the problem. I could not get the local doc to refer me for an Electrophysiology (EP) study. But I was a single parent of a 16 year old at that time. I had to work!. And it was becoming impossible to work. Soooo...enter Dr. Gleva. I called her office. They normally only see clients by referral. I spoke to the nurse and begged, yes begged, her to see me. I told them I had all of my records and would do whatever it took to see her. They agreed to see me asap if I would get a new primary doctor to continue management. OK, done! She saw me in consult and an EP study/ablation was scheduled for January 2005. You can see an explanation of what that is here ...
http://heartdisease.about.com/cs/arrhythmias/l/blepstudy.htm. Before the ablation was done, I had an echocardiogram done. It showed an elevated estimated right ventricular pressure as well as left ventricular hypertrophy and atrial enlargement. This was where my journey with Pulmonary Hypertension officially began. I was very, very sick and decided I wanted to see my family for Christmas. We gathered at my parents house in AL. I have one picture of myself from that time. I was so bloated and gray. Yuck. My family told me afterwards they thought I was going to die. I felt like I was. If I had not been athletic before, I think I probably would not have survived this period. So, back in MO...had the ablation done. This made a tremendous difference in how I felt. I continued to have frequent chest pains. This has been managed with medications….sometimes better than others. I did manage to return to work. Some days I feel better than others. Every day is still a struggle in one way or another. Medication has returned my heart to a normal size!! So, onward I go. Every day that I open my eyes is a new gift and adventure. I hope all of your journeys are cherished and never taken for granted.
Take care, ali