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Always Playing Catch Up

I have been very neglectful of my blog the past year.  I truly apologize to my blog and to my readers, if you all have given up on me.  I tend to be writing all my venting, happiness, and general chatter on Facebook.  I really need to remember to post here as well because I've lost a lot of myself along the way because I feel somewhat sensored on what I can say on Facebook because most my family reads what I write.  Not that I'm doing anything that I need to hide but I just feel more free in what I say.

It's been a roller coaster ride the past couple of months.  The worst that happened is my niece Nichole, 32 (almost 33) past away suddenly on May 6.  We know she would never leave her two kids behind if she had a choice.  The autopsy results aren't back as they have to wait for toxicology results, but we think she might have been in kidney failure or had a bad kidney infection because her lower back hurt her the day before she died.  We don't know why she died other than we are certain it was her time.  God must have needed her for a special purpose.  Of course, we are so heart broken about her being gone but we are also comforted in knowing she is with God and that we will see her again.  Her obituary is here.  She was and always be such a beautiful woman and I love her so much.

Elyssa is out of school for the summer and she is doing pretty good. She misses her teachers and the kids so it's hard on her.  However she likes the swimming lessons and other summer activities.  I think there are times she gets fed up with me when I don't understand what she is saying but that happens all year long.  Ishe is talking more, which is good, but still is very limited in her vocabulary.  

I'm so grateful to have Elyssa because she is so special and she makes me smile and laugh.  Life would be pretty boring without her.  I'm also grateful for Mom and all she does for me.  It's frustrating not to be able to do all I want.  My RA is worse as far as swelling goes but there is about a 10% decrease in pain.  That isn't good enough for my Rheumologist so he has put me back on Imuran along with the Enbrel to see how they work together.  

I had a right heart catheterization last week to check the pressures in the chambers of my heart as well as my pulmonary artery.  The pressures in my heart are good but my pulmonary artery didn't respond to the nitric oxide test as well as it did during my last heart cath about 18 months ago.  That tells the doctor whether calcium channel blockers are going to be good or if I'll need a different class of medication.  My Pulmonologist will go through all the data and call me with a new treatment plan.  Either he will increase the current medication, Ditiliazem, or change it to the other type.  I haven't heard from him yet but when I saw my RA doc yesterday, the notes of my heart cath were in the system so hopefully I will hear by early next week.  I'd hoped to hear from him today but he might be out of town due to the holiday. I have to go in next week on July 11th for my annual breathing tests so if I haven't heard from him by then, I'll bug them.  

My pulmonologist's office and nursing staff knows me well because I've had to make Abigail pain in their asses the past three months because I was having trouble getting an appointment.  I was Suisse to have an echocardiogram in April, which I did, then see his PA in May.  I started calling in Feb for an appt but they kept putting me off saying they didn't have her schedule yet and it was the same story every time I called.  It was ridiculous.  So, long story short, I got an appt with the doc himself because I made such a stink about them not following through with their own directions to me.  They were mucking about with my health and I didn't appreciate it.  Then once I saw him, I caught his nurse in a lie about the preauthorization for the heart cath.  She said she called the insurance but they hadn't processed it, when in fact, the didn't even have any paperwork from the nurse!  She about shit a brick when I told her the insurance didn't have anything.  She called me an hour later with the appointment for the heart cath.  Yep, they all know my name now!  I'm not the only patient who has problems.  However, I won't change docs because he is the best.  

So, that is pretty much the major stuff.  I don't get on my computer much because it bothers my hands, wrists, and shoulders to do much.  Then I also have to keep my legs elevated so I do most my computer stuff on my iPad.  I haven't even been outside much to take photos and I really miss it.  Darn pain and fatigue...  I'm still grateful for all the good things in my life and I know there are people in a lot worse health than me, so I do keep things in perspective.  I also let myself have a pity party on occasion to get all the negativity out so I can focus on the good gain.  

Posted on Wednesday, July 3, 2013 at 3:06PM by Registered CommenterKaren | Comments2 Comments

Reader Comments (2)

So sorry to hear about the death of your niece... She was my age. Scary stuff! We just don't know when it's our time, do we?

July 15, 2013 | Unregistered CommenterNikki-ann

Hi.
You kick their butts at the doctors office, go Karen!! Heart cathaterization sucks, you have to deal with so much. I hope they get your meds ajusted to help better. I have been checking to see if you post.

Take care.

Tina

July 25, 2013 | Unregistered CommenterTina

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