the one about the pouring rain

The pouring rain, you ask? Well, it has been made clear to me lately that when it rains, it pours! That is not meant to sound negative, but in this update, every story has something to do with rain or pour. Plus, we have had so much going on lately, that.. yes. It does seem like when it rains, it pours!

I'll begin with rain/pour story #1. (Warning, this story is kinda long, so feel free to skip ahead.) As probably everyone knows already, I have some issues with my heart. I really hate talking too much about this but I have been having some problems recently and thought I would share. In January, I went in for my regular check up. My Doctor decided to take me off of my medicines because I had been doing so well. It was decided that the negative side effects of my medicine were not worth it anymore and as long as I didn't get pregnant, I was fine. The first few months were going well, but lately I have noticed things were changing. My energy was crap and my blood pressure and heart rate were getting high again. I got super sick with flu like symptoms during the first week of June. I went to my family doctor and she said I had a virus. I had been fighting a fever, aches, chills and all of that fun stuff. I started feeling a little better within 10 days or so, but still not awesome. I was up and down for a week or so, then i got really sick again. I was feeling awful and I knew it was my heart. Brett had called my cardiologist and made and appointment, but until then I was supposed to stay down and track my vitals. (Sure is handy having an EMT for a husband!) My appointment was set for Thursday July 1st. The Friday before, I could feel I was going down fast! I felt awful. I had a RESTING heart rate of 120-140. I had headaches, body aches and a sharp pain in the left side of my neck. We were super scared. We called the cardiologist and he didn't seem to concerned. He kept saying that my heart looked great in January when I had my last echo cardiogram. Well a lot had changed since then and I didn't feel like he was taking us serious. By Tuesday night, Brett was scared enough that he felt like we needed to go to the hospital. I didn't want to go to our local hospital because I knew they would just send me to SLC. We packed up everything, sent Quayd to my brother's house and hit the road. We got to SLC around 11:00 pm. When I got to the ER, there were several people there waiting to be seen. As soon as they took my vitals and heard my symptoms they marked my chart as "URGENT" and took me right back. I saw a Doctor right away, they started an EKG, blood work and a million other tests. I had a fever of 101.5. They did several different tests and scans on my heart and decided that except for the high heart rate, it looked good. They knew there must be an infection somewhere but didn't know where so they didn't dare give me an antibiotic. (BUG! What is with doctors and antibiotics these days?!?) They gave me some meds and IV fluids and I started feeling better. They released me the next day. I still had an appointment with my cardiologist on Thursday so we just got a hotel room and crashed. When I went to the cardiologist, he was a total jerk to me! He made me feel like I was wasting his time. Don't get me wrong, I was glad that he said my heart looked good but he didn't even take the time to listen to everything that had been going on. He pretty much told me that I was old and fat. OLD???? I am 31!! Fat??? Yes, but had he looked at my chart and cared a little bit, he would have been impressed to see how much weight I have lost since I last saw him. He adjusted my medicines and sent me home. He was a huge ass! We drove home and I was feeling worse than ever. On Friday, I went back to my family doctor and she said that it was obvious that I had a terrible sinus infection. I had a fever of 102 and she gave me an antibiotic. I have been feeling better, but my heart rate is still high. I still have body aches and I just don't feel that great. I guess it will just take time. Whatever. Anyway, I can't end this story without telling about the HUGE outpouring of love I felt during all of this. I have such great family and friends and they were right there, bringing us meals, stopping by bringing treats, visiting, calling and texting and it seriously meant the world to me! My pal Cara let me borrow her New Moon movie so I could get all caught up before I go see Eclipse. She also brought me some popcorn, licorice and these fun vampire teeth!

Love it! Thanks Cara! We had tons of fun with these!

Ok, rain/pour story #2. It was the Annual Galley family camp out this last weekend and it was a blast, as usual! We had a huge turnout and I love being around this great family. We were able to go river rafting on Friday morning, and even though I wasn't feeling great, I still had a great time. (There was on incident that happened that kind of put a damper on the weekend, but I am saving that for story #3.) The weather wasn't totally cooperative. It rained and poured almost the whole time. Oh well. Nothing can ruin our camping spirit!

Not even rain/pour story #3. Brett, Quayd and Finn headed up the mountain for camping on Wednesday night. I needed to stay and work another day, so I rode up with Talia Thursday night. It was so nice to get there and have camp all set up! Brett and Quayd did a great job. After we ate dinner that night, we were all chatting around the camp fire. Brett started playing around with some of the teenage boys. Not sure how it started, but they started having a fly swatter war. Some how, Brett stepped back in a hole and hyper-extended his knee. He was in a lot of pain but said it would be ok. By Friday afternoon, he was about to pass out from the pain. He decided to head to town and go to the ER. The ER doc said he tore a contour ligament and that he needed to see the ortho specialist. He said it would most likely require surgery. The Doctor put him in a brace, gave him crutches and sent him on his way. Brett made an appointment for Monday (today) at 4:30 with the ortho guy. We weren't sure what a "contour ligament" would be, so when he got back to camp, we googled it. (Yes, we had Internet on the mountain. Talk about "roughing it!") It is either the ACL or the MCL. Both are very bad. We decided to wait and see what the doc said on Monday. We went to his appointment and were told many different scenarios of what it could be. All sound pretty bad. Brett has to have an MRI of his knee so the doctor can see exactly what is going on, then we will go from there. I keep reminding Brett that he is not as young as he used to be, so playing with those teenage boys was probably not his best idea. Actually, he is suffering enough with the pain, so I have tried to keep my mouth shut. So when it rains health drama at our house, it pours!!!

Rain/pour story #4. A few weeks ago, Brett had to teach a HAZMAT class in Price. He had already been in Denver for a few days for work then 3 more days in Price. I had been feeling crappy and stressed and I just needed my hubby. Quayd and I packed up and drove there so we could spend the weekend with dad. we ended up staying an extra day and we had a great time! Brett was teaching with his friend Todd and his family ended up coming down too. One night while Brett was teaching, Todd's wife and I took Quayd and the other kids to Toy Story 3. The next day when Brett was finished teaching we went to the wave pool.

The waves were seriously pouring down on everyone! It was so much fun!

We were lucky enough to get to go boating with my brother and his family on July 4th and 5th. That brings me to story #5. We packed a nice big lunch, bought fishing licenses, caught night crawlers and got all ready for a fun day on the lake on the 4th of July. We were there for a couple of hours and guess what? It started to rain! And when it finished raining, it started to pour! We tried to stick it out for as long as we could, but we were freezing! We had caught several nice fish. We thought if we just cruised around the lake for awhile, it might clear up. We had been going pretty fast for awhile when we realized that our fish basket was still hanging off the side of the boat. We stopped pulled it in and it was empty. :( All of our fish fell out the bottom. It was raining even harder, so we packed up and went home. Empty handed. Because of the long holiday weekend, we packed a new lunch and headed out the next day! It was perfect! We caught lots of fish (and even came home with them!) and cruised around on the lake for hours.

The tooth fairy is responsible for rain/pour story #6. She has been hitting our house so hard lately, it seems like it is raining tooth fairy magic! Quayd is at that age where he is losing tooth after tooth after tooth.

It seems with each tooth comes less drama! Quayd used to freak out when it was time to pull a tooth. Last week, he lost one while eating a ice cream cone and it was never retrieved. He lost another last night and he came to me and asked me to pull it. The tooth fairy has brought "scratch and win" lottery tickets for the last two teeth lost. He thinks they are so cool. :) He is getting so big! I love and hate it!

So I guess that does it for my "when it rains it pours" blog. Kinda hokey, I know. And very long. Sorry about that. Once I finally take the time to sit down and blog, the word seem to just pour out!

the one about my freaky rash

I'm not sure what this is all about, but I got the weirdest rash in the WORLD!

Brett and I started going to the tanning bed 1 week ago to get ready for our vacation next month. (We are going on a Mexican Riviera Cruise April 25th - May 2nd!!!) I have not been able to tan for years because of the medicine I was on for my heart. Since I went off my medicine in January, I just assumed I would be able to tan like I did when I was a kid. I have started VERY slow! The first 2 times I went was only for 6 minutes. I did get the tanning bed itches that come standard with your first couple of visits to the bed. I only went every other day and by the third time, I upped it to 7 minutes. I got a little toasty and even more itchy so we took it back down to 6 when I went last evening. My back had really been bugging me so I left my shirt on and made sure my back, belly and boobs were totally covered, since they have been itching so bad. I even adopted a spatula that I carry around and I so affectionately call "Scratchula." As soon as I got out of the tanning bed, I knew something wasn't right. Brett and I got in the car and I was about to go crazy with itch. I took my bra off first thing and it was just getting worse and worse. We got home and I took my top off. I had Brett rub lotion on it and it would help for a second, but it just kept getting worse. It started breaking out in hives and wherever I would scratch, it was looking like it might bleed. By about 8:30 I was in tears because it was so bad. The hives/welts were huge and covering my whole back!!! I showered, Brett ran to the store for cortisone cream and I started popping benadryl. NOTHING. I tried EVERYTHING! By 11:30 I couldn't take it anymore, so I took myself to the ER. They got me into a room pretty quickly and started me on several pills. Steroids, something like a benadryl but much stronger and something else. They said it should start to improve within 20-30 minutes. By this time, the rash and hives were spreading to my legs. Well, they monitored me for about an hour and nothing was changing so they came in with some shots. I don't know what or how many but I told them I didn't care if it was battery acid and dog crap, if it would help, I would take it! After another hour, it was still really bad but I felt like it was getting a little better. They told me there was nothing else they could try and that they had given me the max dose on everything. They sent me home with a prescription for a week worth of steroids and 3 other things. Today was much better, but I am still very red and itchy. It is just making me feel like crap. I didn't want to broadcast my back fat on the Internet, so I just took a picture of my legs. This is looking about 100 times better. There is little to no swelling, just lots of red dots.


I think we finally decided that 7 1/2 years of heart medicine messed with my blood and skin and that it is probably not in my Best interest to tan. I guess it is either pasty white, or tan in a bottle for me. :( By the way, Brett has the nicest tan and he looks so good!!! I am going to be the ghost woman on our cruise ship. I am so white I am nearly translucent.

Just as I was leaving the hospital last night, the Doc started to say something about the dangers involved with tanning and sun exposure. I just looked at him and said, "Seriously, look at me.... I don't need a lecture about tanning beds!!!"

the one about my latest heart info

As most of my friends and blog stalkers know, I have a weird heart issue. It was a rare thing that was brought on by my one and only pregnancy. I don't really talk about this much, not because I don't like to, but because I HATE for people to feel like I am a sympathy seeker. I feel like this is the hand I have been dealt and I am really ok with it. Everyone has their issues and problems, this just happens to be mine. If you don't know my story, and you are interested to read about it, here are the links to my blog posts about it.

Part One
Part Two
Part Three
Part Four
Part Five
Obviously you can tell it is a pretty long story.

Anyway, I went in for a check up in November. No biggie, just standard yearly refill the meds, etc. I actually went to a new doctor this time. He comes to our local hospital and he is on our insurance. Our insurance changed and my Doctors at the U were no longer on our plan. I always hate going to the cardiologist because I am always the youngest person in the waiting room by about 50 + years! And they all look like they are on their last leg as they are lugging around their oxygen tanks and wheelchairs. When I went in the exam room and met my new Doctor, he was shocked to see me looking so young and healthy. He said after consulting with my old docs and reading my chart, he expected to see someone more sickly and unhealthy. We talked about everything I had gone through over the past 7 1/2 years. We also talked about the severity and rareness of my disease. He explained to me that they are learning more and more about this disease and that basically, Peri-partum cardio myopathy (PPCM) is curable. Congestive heart failure (CHF), however, is not. People with PPCM and CHF can live a normal MEDICATION FREE life, as long as certain steps are taken to prevent a relapse. He also said that as long as my heart Ejection Fraction, the amount of blood that your heart pumps with each beat, has not decreased, I would be considered cured of PPCM and could stop taking medication. The day I was life-flighted to the U, my ejection fraction, or EF, was 27%. A normal EF is somewhere around 55-75%. I was told it would never get above 40% ish. It would be impossible considering all of the damage that occurred to my heart during and after my pregnancy. Two years later, my EF had increased to 55%. My Doctors were shocked and thrilled. I was actually in the "normal" range. My heart was still enlarged and "sluggish," but still amazing news. At that point, we discussed going off my meds, but decided it was still a good idea to stay on it for prevention. With all of the new research, it was determined that the only "prevention" is no pregnancy. My new Doctor ordered another echo just to make sure it was still around 55%. I went in last week and everyone was amazed to find out that EVERYTHING had become normal and my EF had gone up to 68%!! Unbelievable!!! So, I get to go off my heart medication!!! This is the best news I had heard in a long time. It sounds easy to be able to just quit taking medication, but that is not the case with this medicine. It is a Beta-Blocker and that makes your heart beat the same rhythm no matter what. It took MONTHS to build this up in my system. I started with 0.650 mg, then 0.325 and finally got it up to 100 mg. It is one of the hardest medicines to be able to build a tolerance. I was literally a zombie through this transition. My body hurt everywhere, I was weak and so tired. Once I got used to 100 mg, I was pretty good as along as I didn't miss a dose. Miss a dose = feel like total crap again. There are many side effects and limitations with a Beta-Blocker, but one of the worst for me has been the unchanging heart beat. If I do any type of cardio exercise, my heart rate never changes. That means that as my muscles work harder and need more oxygenated blood, they don't get it. No matter what. So I tire very quickly! Of course I am thrilled to get past that and be able to exercise, take cold medicine, have more energy etc. etc. etc. But I am very nervous about the transition. I was told getting it out of your system is easier than building it up, but it is still rough. Starting last Thursday, I was directed to cut to 50 mg. It has been a rough couple of days, but I am surviving. My last 50 mg dose is Wednesday and then.... NOTHING! I will be done! I can't believe it. We were sure I would be on this FOREVER! Really, this is a huge deal for me! My energy level has suffered, but I know that in a month or so, it will be over. I am so so so happy, scared, excited and nervous, among other emotions. I don't like thinking that I will be "back to normal," because I feel like there is no normal. Everybody's "normal" changes all of the time. Normal for me before all of this happened when I was a 23 year old woman, is completely gone. Normal for me as a 30 year old woman on heart medication is almost gone. So I am excited to find a NEW NORMAL! And I am excited to finally share this info with you. I have only told about 4 people because I don't want people to feel sorry for me and see me as a sickly girl with a weird heart thing. I want them to see me as Mandy. Brett's wife. Quayd's mom. Mandy.