Friday, July 24, 2015

Well, Friday night I checked something off on my bucket list.  I got a tattoo.  For so long I have wanted one, but most of my life I have been on a blood thinner, with Coumadin being the drug of choice for most of that time.
Coumadin requires about 7 days to get out of your system and I didn't dare go that long with the possibility of having another clot form.  But this year I was put on Xarelto and that only has a day half life (which means I can stop one day).
So I stopped my blood thinner (no of course I didn't consult my doctor!  What fun would that have been?) on Thursday and got the tattoo on Friday evening and started the medicine again Friday night.
I also had to think about what I really wanted.  Then I read about the semi-colon project and I really wanted to do that type of a tattoo.  A semi-colon can be used where a sentence would normally go on, continuing on with the story.  (Read more about it here: Semi-Colon Tattoo Project). 
But I didn't want just the semi-colon.  I wanted something personal about my own story.  And I found it.  Here is a picture of my new tattoo:
I am very happy with it.  It is just perfect for me.  Just Breathe is my mantra. 
On another note, I went to the doctor today and I have lost another 5 pounds.  That brings me to 22 pounds since I started my new healthy eating program.
My primary care physician is sending me to a neurologist for numbness and pain in my arms and hands and to the rheumatologist for my generalized pain issues. 
Hopefully they can get a handle on them. 
On a plus note, I am feeling a little better.  I talked to my doctor about me filing for disability and he said he felt strongly it was the right decision.  We shall see.

Thursday, July 16, 2015

Well step one in my new life is started. I filed for disability with SS today. I am waiting to hear back from my disability insurance.
Wonder which one will give me grief first?
My breathing has been much better since I started the healthy eating program.
I had gotten used to that in the past week and a half.
But yesterday and today have brought me back to reality. I am having a great deal of trouble breathing, esp. when walking. And my bp is all over the place. Very low, very high, normal.
I looked back at the past couple of days and my eating hasn't changed.
But PH is a breathing disorder and healthy eating can only do so much.
I will keep on with the plan, rest when I need to and do what I can.

Tuesday, July 14, 2015

I am about to admit something big.  Just be prepared.
I am scared.  I am scared not about dying but rather about living.  I am scared about what is ahead.
For the first time in 25 years I am not working.  With no hope of working.  And about to receive my last paycheck.  And have already received my last unemployment check.
For the first time in a long time I have to depend on someone else to bring in money to the house.  For the first time in a long time I won't be a big part of our finances.  I am applying for disability and have heard horror stories about how long it will take.
I am afraid maybe they won't think I am disabled.  That maybe my doctors won't code the application right and it will be denied.  That my primary care physician who is so laid back with me will be laid back with my application.
What will we do?  What will we do?  I have taken out long term disability insurance.  I have contacted them and started the process.  I have paid big money since being laid off for this insurance.  What if it was all in vain?
And if this wasn't enough to worry about, I am worried that I am no longer being seen as the strong, independent woman I was.  I am afraid I am being seen as a patient.  
I love my husband and I know without a doubt my husband loves me.  I know he would never leave me and will always be there for me.
But what does he see when he looks at me?  Does he see the vivacious, sexy (yes, James once saw me as sexy) woman I used to be or does he see me as the sick, frail woman I am becoming.  No matter how much good, healthy eating I do, truth is I am sick.  I have bad days.  Really bad days.  I breathe bad, I have a hard time walking and I have chest pain.  Here lately I have dealt with low blood pressure that has put me down.  I use a walker when I can walk and a wheel chair when we go places.
James is responsible for helping me get around.  That means he has to push me in a wheel chair when we go anyplace.  I am a big woman.  That isn't easy.
I have seen my sister struggle taking me places.  I wonder how she does it.  Sometimes I wonder if it is worth the effort to go anywhere.
I remember when my mom had her stroke.  Mom was 30 and Dad was 33.  Younger than I am now.  For all intents and purposes, Dad lost his life mate.  He became a caregiver.  No longer were decisions made by both of them.  Going places involved all planning done by him.
Daddy loved Mom.  It was 1971 when Mom had her stroke.  At that time, men didn't take on household duties, such as raising kids.  It would have been perfectly acceptable if he had put Mom in a nursing home and us in an orphanage.  It happened all the time.
He stayed.  He took care of her and of us.  He later took care of his mom.  He was a caregiver.
What I did see though was a lack of romantic love.  No more kisses in the kitchen.  No more playful tickling.  Mom was his wife, but she wasn't his WIFE.
And he had an affair early in that time when Mom was just recovering.  This isn't a secret.  Family knows about it and anyone who was around at that time knew about it.  It was short, but it was an affair.
I don't blame him a bit.  In fact I am surprised there weren't more affairs.  But Daddy being the Christian he was, he knew it was wrong.  He knew that wasn't who he was.
But seeing that in my Dad makes me wonder about my marriage.  Will there come a time when James will no longer see me as his wife and more like a patient?
James would say no way.  He will be angry to think I even have these thoughts.  But they are real.
The less I get away from the old Donna, the more I worry.  The old strong Donna.  The one that had a real job and a name in the community.  The Donna that didn't take as much as she is now, but rather gave.  The Donna that made decisions and didn't doubt them.
I know.  I will hear "turn it over to God".  And I have.  But it is so hard.  When you are in the valley it is hard to believe you will ever be on top of the mountain.
No I am not depressed.  Yes I know depression is real and I have dealt with it before.  I am not spending my days crying and all these thoughts don't consume me.
But I have them.  I think anyone who has ever dealt with an illness has had these thoughts.
So there.  I have poured my heart out.  I don't have any answers.  Time will show what will be will be.
Thank you for listening.

Thursday, July 9, 2015

Today I learned that it is not a smart move to use your bare hand to grip a ceramic plate that has just been taken out of a 425 degree oven.  You now know.
Besides the lesson of how to not burn my hand, I learned something else today.
Nachos do not have to be bad for you. They do not have to be loaded with lots of chips and cheese to be satisfying.
I took about 10 baked dipper tortilla chips (it may have been even less, some were broken). I thinly sliced a piece of leftover steak (from last night) and put a sprinkling of grated Mexican cheese (about 1 1/2 tbs). Put in the oven at 425 for a few minutes. Added some sliced avocado (rather than my usual guacamole/sour cream toppings).
It was delicious and satisfying. I am a cheese LOVER and I can tell you this gave me my cheese "fix" without totally blowing my healthy eating habits.
Hmm...see I am not too old to learn new tricks!

Wednesday, July 8, 2015

Whew!  Been a long time since I have blogged.  But a friend suggested I do it, so here I am again.  Hopefully I will be more faithful to it than I have been.
Good news:  I AM STILL ALIVE!  And while that might sound a little dramatic, well that is who I am and how I feel.
Back when I first started blogging about having PH I wasn't sure at this time I would be alive. My breathing was horrendous, and I didn't have a good feeling about life in general.
Things have been up and down.
I went through pulmonary rehab right after my diagnosis.  I did very well and gained better breathing.  But insurance on this ran out and I stopped.  Plus I had started not doing well physically (it was winter) and I kind of gave up.
I slowly stopped the Weight Watchers and went back to old habits.  I stopped going to the YMCA to walk in the water because it became too difficult to walk to the pool, do the water stuff and walk back to the car.
Life just continued on.  My breathing got much worse.  Going from my car to the front door of my office building sometimes required 2 or 3 stops along the way.  And once I got in the building, I was so out of breath that I had to sit before continuing on to my office.
I wasn't sure which one was worse:  Winter or Summer.  Both were horrible on my breathing.
I was on FMLA and seemed like sometimes I was out more than I was in.  It was difficult to get ready in the mornings.  I would have to shower, rest, do my hair, rest, get dressed, rest.  You get the picture.  Sometimes I felt like I needed a nap after getting ready.
In November-December 2014 I started having severe chest pains.  It didn't matter if I was doing anything or not.  The doctor scheduled me in December for an echocardiogram and stress test.  We did these and really didn't find anything more than we knew already (that my pulmonary pressure was up).  They scheduled me for a heart cath on January 29th.
We started making plans for me to go out on disability soon.  My boss was retiring in March and since we had opened Carter BloodCare Central Texas together, it made sense to leave with him.
But God had different plans for me. 
On January 27th I was laid off.  Somehow I was prepared for it in some ways.  But it was still hard. 
I went on unemployment, not sure if I could work or not.  No jobs came my way, so we haven't had the chance to find out.
The biggest issue was that my health insurance ran out on the day of my departure.  I got picked up by my husband's insurance but not in time for the scheduled heart cath.  It took until February to get that going and the heart cath was scheduled in March.
Funny thing happened.  I went from being an employee at a blood bank to being a recipient of blood from a blood bank.  The first of March my breathing became extremely difficult and I had significant chest pain.  On a Sunday afternoon, an ambulance was called and I went to the hospital.
Come to find out I had an extremely low blood count that was causing the shortness of breath and chest pain.  My blood count was too low to have the heart cath scheduled the next week.  The decision was made to give me a pint of blood.  My blood count went up almost immediately.
So I was discharged from the hospital and the next week I had the cath.  Good news.  I had no blockages and other than what we expected with the higher pulmonary pressure, everything looked good.
They put me on a new medicine to help with the chest pains and almost immediately I had some relief from these.  My doctor put me on oxygen as needed.
While being unemployed I found I was bored easily.  Online shopping became both my friend and enemy.  I slept more than I wanted.  Cried off and on.  Depression would come and go.
In March we started planning a family vacation for June to San Antonio.  All of us, my sister and her family, my daughter and her family and my husband.  I thought about this vacation night and day.  We talked about it night and day.
During this time my blood pressure went up and up.  173/110 at the highest.  I had an appointment with my cardiologist June 15, but still...
The time for the vacation finally came and it was a great trip.  We all got along (pretty good with 10 people and a baby).  Besides it being hot and me having a few breathing issues due to the heat and humidity, I did pretty well. 
I went to the cardiologist the day after the vacation and my blood pressure was really up.  He increased two medications by double and told me he wanted to see me in 2 months.  If my blood pressure wasn't down by then he would add a FOURTH blood pressure medication.  He told me to continue to try to lose weight and to walk indoors as I could.
Cooking had become difficult for me.  Standing was excruciating.  Working in the kitchen was taxing.  So we had become reliant on fresh and frozen casseroles that I could stick in the oven or microwave and take out food.
About a week after the doctor's appointment a fire started under me.  I could not go on anymore blood pressure medications.  I read about sodium having an impact on bp (something no one had really ever talked to me about) and made the decision to cut my sodium.
We went to the grocery store and bought fresh foods, frozen veggies and fruits with no added sodium, and cut out take out food.  I found bringing a chair into my kitchen helped with food preparation.  We were eating delicious, healthy foods.  And fluid started coming off.  Boy did it come off.
About 4 days into the new healthy eating program I felt awful.  Tired and weak.  Took my blood pressure.  It was 80/63.  I had never had it that low.  I called the doctor's office and waited for them to call back.  My blood pressure stayed low, but a little better.
When the doctor called back we discussed my low blood pressure.  I told her about my new eating habits vs. my old eating habits. thoughts on sodium causing blood pressure issues was correct.  We had gone from taking in a TREMENDOUS amount of sodium from take out foods and frozen casseroles to very little sodium.  And with the loss of fluid I had been experiencing, my potassium was down.  That caused the low blood pressure.
I added some potassium and tried not to be too drastic with my low sodium diet.  My average bp is now 110/72 which is great.  And I have wrinkles on my feet where I have lost so much fluid I was hanging on to.  I feel better.  I haven't weighed yet, but I am sure I have lost some weight.
Now we are concentrating on portion control, lower fat, lower calories, and sodium.  I am finding new ways to cook that don't absolutely wear me out (no Julia Child).  My grill my husband got for me is getting used quite a bit.
I still don't know what is on the horizon for me.  I started the process of filing for disability, but it can be a long and difficult process.  We are cutting back on expenses until we know how that is going to go.  I am a little afraid of the financial future.
But as with everything, God will get us through it.  He always has and always will.  God is good.  ALL THE TIME!
Check back and see my progress.  I will probably start posting some of the simple recipes of the food I am making here.  Thank you for being my friends.  You have meant so much to me!