I got my feelings hurt last week and my body hurt last night!!

Last week I had a unique way to celebrate my birthday....I went to THE DENTIST!! It was one of those "every 6 months" appointments that I'm sure I wasn't paying attention to when it was scheduled. Otherwise, even on my most mellow of days I would not willingly go to the doctor to celebrate anything, especially my birthday!

I was actually suppose to go to the dentist about a month ago. But, the appointment was scheduled for just a couple of days after my fight with gravity. So, I rescheduled, obviously without thinking.

Anyway, I've been going to this dentist for over 5 years. About a year after getting diagnosed with PH, I realized that I needed to "put my teeth in the hands of a professional" who had some kind of experience with patients with "unique" physical issues. This man and his staff came highly recommended and have always been very understanding and on top of their games.

So, imagine my surprise when I sat down in "the chair" and had the hygienist say, "You're the one that can't lay flat, right?" (Many if not most of us with PH can't lay flat. It is very uncomfortable and really makes it difficult to breath.) I said, "Yes." And, she promptly lowered the chair and flattened it to the point that my head was actually lower than the rest of my body! I held onto the sides of the chair and sat up the best I could, fighting gravity since the feet on the chair were so elevated! I said that I couldn't lay like that. She didn't apologize at all as she reluctantly move the head back up to a more comfortable position. She then announced "I can't do this procedure! I can't work with the chair in this position!" I turned to her and said, "Fine. I'll be more than happy to leave and schedule with someone else. She back-peddled to the point where she thought she could do it.

The whole cleaning was filled with snarky remarks about how difficult this was for her...blah, blah, blah...At one point she did notice that it was my birthday. She joylessly told me "Happy Birthday" commenting on hating to "get old." (She was at least my age if not older.)I told her that I was THRILLED to turn 55! That I was not supposed to live past 52-53, so I look at every year as a celebration! She didn't say a word, but went back to her job, complaining the whole time!

By then I had decided for sure to tell the dentist what happened. He had been taking care of me for years. Except for this broad, I've always had excellent hygienists and have never had any problems. So, Dr. X came in, said a couple of nicey- nice things and then said, "Annette, why can't you lay flat?" Oh For Heaven's Sake!! He proceeded to complain. But, by now I was so livid that I blocked both of them out and tried to visualize finding a new dentist! When he was finished and tried to move me on for his next appointment, I asked him, "Why, after 5 years, there is now a problem and complaints about my inability to lay flat?" Back-peddling began again, with him trying to tell me it wasn't anything to "stew" about. I continued to fantasize about a new dentist.



So, here's the deal. It's hard enough living a good life with this disease and it's restrictions. But to have two professionals make a big stink out of it, is very disheartening. Maybe I'm too thin-skinned. I don't know, but, I was very upset and felt that unique ache of having my feelings hurt. Plus, IT WAS MY BIRTHDAY!!!.

Now, onto last night.........

Many of us are experiencing some wild spring weather. You might have pets that get nervous and might need a little extra TLC. Well, Haver the Fat needs lots of reassurance and is only happy when he's on the lap of an adult.





Yes, Haver hurt my body! The hardest part was sitting there with "His Wackiness" cuddling in fear for about 45 minutes! My legs were really going to sleep!!



Yeah, I know. There's no way to get mad at this guy. But, when the storms continued until about 2:30 a.m. I can honestly say he did lose some of his appeal!


OK, that's all for now.
Thanks for checking in.
Thanks for reading.

So, I was having a conversation with Asa and Haver yesterday.....

They were asking me why I hadn't blogged for TWO WEEKS!! I told them that there were 3 big reasons why I hadn't posted anything these last two weeks.

#1. I was still recovering from the concussion that I received a month ago, when I passed out and hit my head on the kitchen counter. I've finally gotten to the point where I can bend my neck and turn my head enough to type and not have the world spin like a top!

#2. I have also completely recovered from a bout of the stomach flu that I somehow caught this last week. I got the flu shot last fall. I just thought that would cover things. Oh well, lesson learned.

#3. I'm lazy.










After talking it over, "The Boys" agreed that I was indeed very lazy. In fact, they were wondering why I hadn't fed them in the last 5 minutes!

I hope you're are all doing well. I want to let you know how much it means to me that you are still reading this blog. I'd also like to thank you from the bottom of my heart for your prayers, notes, comments and emails. Don't ever hesitate letting me know if there is something I can do for you.

Take care.

Annette

Lovely Weekend and..... Don't You Think It's About Time for a Movie and Book Review?

The Nebraska version of "Mother Nature" was smiling on the Markin family this weekend! The sun was shining, the flowers and trees were blooming and the diamonds on our future daughter-in-law's ring were incredibly brilliant!




Yes, I said "Our future Daughter-in-law!" Chris and Suzie drove 8 hours on Saturday so they could spend some time with us! This is an incredibly special ring. It belonged to Rod's mom's mother, which would make her Chris' great-great grandma!! Because of the age of the ring, the jeweler was unable to separate the engagement ring from the wedding band. I think Chris and Suzie might look for another simple band to add to the top of the ring, but, I'm not sure. I asked Suzie if she was okay with having Chris' great-grandma's ring, or, would she rather have a new one. "Oh no," she said. "I love it! In fact, I had been looking at rings online for a few weeks, but, wasn't able to find anything that 'seemed right.' When Chris proposed and put this ring on my finger I thought, 'this is the ring I was looking for! It's perfect!'" Talk about a sweetheart!!














We were able to celebrate the engagement in style. Nick, Kara, Chris, Suzie, Rod and I enjoyed a great dinner at Firebirds.






We were actually having so much fun, that we evidently stayed a bit too long for the busy restaurant because everyone from our server, to the water guy, to a variety of different "table cleaners," and then finally to the manager came to our table asking if "We had a nice meal." if there "Was anything they could do for us," yada, yada, yada! At that point, we figured it was time to go!

There is nothing better than having your family around! And, when I say "family" I am including the beloved dogs...



Deoji is so...Deoji!



Asa, showing off his sleek body!!




Haver. showing off his large, grumpy self! To be fair, I have to share that Haver had every right to be grumpy. Deoji spent the day before trying to be "romantic" with Haver. And, as you can guess, Haver was in no mood for romance!!

We are so incredibly blessed.

Now, how about a couple of movie and book reviews??

Heaven is for Real!




I've been struggling with the right words to do a review on this book that would not give away too many details, but also would help you realize how powerful this book was. So, I found a review by a real-live writer and copied his words.


"A young boy emerges from life-saving surgery with remarkable stories of his visit to heaven.

Heaven Is for Real is the true story of the four-year old son of a small town Nebraska pastor who during emergency surgery slips from consciousness and enters heaven. He survives and begins talking about being able to look down and see the doctor operating and his dad praying in the waiting room. The family didn’t know what to believe but soon the evidence was clear.

Colton said he met his miscarried sister, whom no one had told him about, and his great grandfather who died 30 years before Colton was born, then shared impossible-to-know details about each. He describes the horse that only Jesus could ride, about how "reaaally big" God and his chair are, and how the Holy Spirit "shoots down power" from heaven to help us.

Told by the father, but often in Colton’s own words, the disarmingly simple message is heaven is a real place, Jesus really loves children, and be ready, there is a coming last battle."


I rate this: 8 puppy paws up!





The movie review for this posting is such a gem! I would recommend it for the entire family (as long as the family doesn't include pre-teens...a little bit of cursing..)




This role seems to have almost been written for Paul Giamatti! He is a family man with a struggling law practice. "For fun," he coaches the local high school wrestling team. One day his two worlds meet up having a huge impact on his family life.
Again, I'm leery to give too much information. Just realize that I'm giving 8 puppy paws up and would love to give it more! (But, I only have two dogs and they each have the regular 4 legs...so I'm kind of stuck!)




Well, I think it' time for me to end this posting. I greatly appreciate you coming to the sight and reading my blog. I'll do my best to continue to post and keep you informed with all things exciting! (Well... at least keep you informed....)

Thanks for checking in.
Thanks for reading.
Thanks for your prayers and your friendship.

Much love

Annette

And the hermit's cave is opening.....

Hello to all and anyone who still checks this blog out from time-to-time!
I'm sorry that I've been gone for so long! It was just due to the "normal" things in our lives...

*The roller coaster of life, better known as "Living with Pulmonary Hypertension and Addisons Disease." I can honestly tell you though, before this last downward ride, I had been feeling better than I have in years! I no longer use oxygen during the day!! I still need it at night and on those days when the roller coaster is taking a dive. I'm still on only 18 ng's of Veletri (same family of drug as Flolan, only it doesn't require being kept cold while in use!) down from 54 ng's in November! As my phriends know, the positive things are what we grab onto....tightly!

*Holidays. It was such a strange December/January that I didn't even write my annual Christmas letter. So, see? I haven't just been ignoring this blog!

*Traveling. I was given the gift of being able to spend some time in sunny San Diego, missing several big snow storms here in Nebraska! (It's all about the timing!)

*Family. Our oldest son Nick, and his beautiful bride, Kara are doing very well. They're both working hard and doing very well!
Chris (our baby!) just got engaged Saturday night! His fiance' is Suzie from Chicago! The first time that Suzie came for a visit, she immediately felt like a member of the family! We absolutely love her! God has completely blessed Rod and I with two wonderful men who fell in love with two wonderful women!

*Animals. I debated whether to include our beloved dogs with the "family" update or here in the "animal" section. I decided that no family member would kill a baby squirrel and bring it around for show and tell (thank you Haver)! They're both doing well or at least as well as two dogs on Prozac can do! Haver continues to be HUGE, while Asa actually looks like he's dropped a few pounds from time to time!



In case you couldn't tell, Haver is on the left and Asa is on the right.

Well, I'm going to end this update for now. I'll have to see if anyone is still checking it out. If not, I'd certainly understand. There are consequences for being a hermit.

Take care.
Thanks for checking in.
Thanks for reading.

Annette

Hello! Happy Friday!

Well, it's been quite a week. The last time we visited, I had experienced an insane reaction to Flolan, the IV medicine I use that helps reduce my pulmonary hypertension symptoms. Well, a week later, we don't really have any answers. In a matter of a few hours I had to reduce my dosage from 50.5 ngs to 18 ngs. Since then I've reduced it again to 17 ngs. I don't know if this is going to be my "new normal," but, it is a good thing that I need less medicine!

I was also planning on switching to this new kind of Flolan that doesn't require me to include ice packs in the fanny pack that hold my Flolan pump and that I wear around my waist. But, because I appear to be "unstable" (no cracks from the peanut gallery) we're now holding off this switch to sometime in December. I'm sure we'll have a much better handle on things by then!

Plus, I'm actually feeling better! I certainly feel better than I did last week. But, I'm starting to think that I'm feeling better than I did BEFORE all of this happened.

Here's where it gets a bit frustrating...
I would really like to think that I've had a little miracle here and, that I really AM better. I'd like to think that maybe this Flolan did some remodeling of the cells in the pulmonary arteries (which is something that scientist are trying to determine)and that I am really, truly better!

But...since this came on so quickly, I'm concerned it can hit again and I'll need to start increasing my dosage again. This disease is really a roller-coaster ride. Although I've never had moments where things looked this good, I have had moments of improvement. Then, in a few hours, or days or weeks, I'm once again on the down-slide of the roller coaster.

So, here's the plan. Since I seem to be riding on the top of the roller coaster right now, I'm going to enjoy it and take advantage of it. But, I'm going to keep one foot planted on the ground so that when (or if) the ride heads downward, I'll be somewhat ready for it.

Does that make sense to anyone?

Well, I think that's all for this post. I woke up very early for some reason and now I'm having a hard time keeping my eyes open. So, I'm going to sneak in a little mid-morning nap.

As always, thanks for checking in.
Thanks for reading.
Thanks for your prayers and your friendship.

Much love
Annette

It's been a rough week...

I thought I'd share a couple of things...
1. Thanks to all of you who came to our "5th Annual Phenomenal Hope for a Cure" that was held this last Saturday, November 6th. I promise I'll give you more details when I get better. It usually takes 1-2 days to recover from the amount of fun I had on Saturday. I was feeling pretty good on Monday, and then really good on Tuesday, until Tuesday night.

The following is what I posted on the PHA discussion boards looking for some help. I just can't write a better explanation, and, I really need to get some sleep.

"Horrific Flolan reaction! Anyone else?

On Tuesday evening, I did my normal routine of switching out the cassette I was using to a new cassette. I then mix a new cassette to have ready as an emergency back-up or to use when I switch out the cassette again the next evening. About 45-50 minutes after switching the new cassette, I started having some flushing problems. Now, if you are a Flolan user, you know that flushing is a side effect. This has happened maybe 3=4 times in the 6 years that I've been on Flolan. We were told to bump the pump flow down a notch or two to see if that helps. It always has helped and I either just keep the pump that rate until I mix and switch the next night, resetting the flow rate to what it was before. It's never been a problem beyond that. My doctor felt that, because Flolan is so sensitive that I maybe mixed a little incorrectly. As long as everything went back to normal when I put on a new cassette, there was really nothing to worry about.

Well, Tuesday night became a nightmare. The flushing came on fast and furiously. My entire head became bright red, then the flushing spread down my arms. Then I got a butt-kicking headache. So, we turned the pump down a couple more notches. I was at my normal pump rate of 76. We went down to 74 then 72. But the Flolan side effects continued to get worse. I started sweating profusely, all over my body. We bumped it down to 70 and things continued to get worse. I was feeling extremely nauseated and really felt like I was passing out. My husband ran downstairs, mixed a new cassette and hooked me up. I was having the same problems. My husband wanted to take me to the hospital, but we all know how "helpful" those ER visits can be. So, my husband called our doctor and he said to just keep decreasing the pump rate to see if we could get things settled down. Finally, at a pump rate of 62 (down from 76)the sweating stopped, the flushing was better and I felt alert. My doctor said to keep the pump at that rate and try to "sleep" it off. Things got quite a bit better, except that I've been extremely exhausted, continue to have an annoying headache and I did end up throwing up yesterday. Today I'm a bit less tired, very light flushing and still no appetite. I don't know what's going to happen next. This is so frustrating! We had our 5th Annual Phenomenal Hope for a Cure fundraiser this last weekend. I was so thrilled that I had backed off doing much for the event because I wasn't overly tired.
CRAP!

Have any of you had a similar experience? We're wondering if I have a "bad batch" of Flolan.
Thanks for reading."


**Since I wrote this yesterday morning, I had to decrease my pump again..twice. So, now I'm on a setting of 56, down from 76 when all of this started. It's very confusing and frustrating.

I'm asking for prayers that we figure out what is going on and that everything settles back down.

Thanks for checking in.
Thanks for reading.
Thanks for your prayers.

Annette

I'm having a hard time getting to sleep...

I'm stopping by for a quick request. I'm scheduled to take yet another "fricken" test tomorrow. This one is called an "Exercise Pulmonary Function Stress Test.

Now I've done the treadmill stress test before.




I've also taken a pulmonary function test before.




It's just that I've never taken an "Excercise Pulmonary Function stress test."



I honestly feel that I'm being a wimp and have no reason to be nervous about this test. It's just that I'm a bit tired of doing uncomfortable tests, with results that come in with no answers. I'm worried (irrationally worried I should add) that I'm going to take yet another test, and learn that the only thing wrong with me is that I'm an old woman who is overweight and out of shape.




So, if I may be selfish, would you please pray that this test is not too difficult, I'm able to push myself hard enough so that the doctors can analyze the information and get some answers, AND that the results do not include any of the following words, "Mrs. Markin, these results show that you have turned into a lazy lump. Your biggest problems are that you are just really overweight, really out of shape and lazy."



I will also be getting my blood drawn to see if I'm still anemic.

OK, that's all for now. I really need to be trying harder to clear my head and get some sleep.

Thank you so much for checking in.
Thank you so much for taking the time to read this blog
And, thanks for caring.

Annette