August 3

Today is going to be a busy day! I have my infusion and then I am getting my braces! Each appointment takes about 2 to 3 hours, so I will be out for a long time! I am going to miss my Gage, this is the longest I have been away from him.

Infusion is so much easier now that I am not tender. It smarts a bit when they put the needle in but it isn't terrible. The needle is funny looking. During infusion, however, I got one of my terrible heart aches. I thought those had gone away but I guess not. I hope it ends soon! I hate POTS and OH. It is so tough to act like nothing is wrong but that is what we have to do because if we don't then people will always stay away from us.

At the end of Infusion they take my vitals but today my BP was 181/86. That is crazy! I guess no more late nights for me!

After Infusion I headed to an appointment to pick up my braces! Unfortunately, the traffic was terrible and so was my memory. Which left me late and lost. It was very exciting to see all my braces! It took around three hours to fit them all but we found out the elbow ones were too big. ( Tomorrow I will post pictures of all of them!)

Because the ankle braces are so bulky, they don't fit in my shoes. So I decided to go to our local New Balance store to get fitted properly. It turns out that when I am wearing the braces I go up a size and out a width. New Balance shoes work really well with my braces because I can take the insoles out and there is a lot more room.

The temperature in the summer time is very hot, too hot for pants but I want to cover up my leg braces because people stare and whisper. I decided the best way to do that would be with maxi dresses. At Kohl's they had some very cute ones that were my size.

While I was checking out at Kohl's my heart pain got markedly worse, I was sweating, super nauseas, dizzy and I got really foggy. My father picked me up and drove me to the hospital. After getting checked in I got an EKG and it was determined that I thankfully was not having a heart attack! They gave me pain and nausea meds with fluids. After about 4 to 5 hours we were allowed to go home.

I need to know my limits better. I always forget that even though I am suppose to sometimes push through it other times I am not. It is hard to tell which time is which.

Forever Flexible,
Hallie Rose

July 27- August 2

I realized that for the last week I had been forgetting to actually publish my blogs after writing them! So I am going to sum them all up in one post.

July 27:
Today, like every friday, I had my infusion. I am really glad that my port site is no longer tender and it is easier for Kim to find. Matt came over tonight, he is the boy I have been seeing. He and Gage got along really well! We decided to watch the opening ceremony of the Olympics together. It was sooooooo long! About half way through of the athletes walking out we got bored and watched Batman with Ben. It was a pretty great day today and I can't wait to see Matt again.

July 28:
I got to sleep in late this morning which was nice! In the afternoon I went over to Matt's house to meet his family. They are all really nice people. Matt is going away for a week sadly.

July 29:
Today was a tough day. I am worried that Gage is making me sick. I have been going down hill since I got him. I really want to keep Gage but if he is making me like this there is no way that I can. I am praying that this will go away soon!

July 29:
Today was even worse then yesterday, at infusion my bp was 140/ 96. I could barely move I was in so much pain. I dragged myself out of bed only to go to infusion or to take Gage out. I really hope this gets better fast. I don't want to have to give him up. I also don't want to loose Matt. One of the toughest parts about being sick is finding someone who will accept  you even though you are so ill and need a lot of help. Matt is so wonderful and will push me in my chair but there is no way that this early in our relationship he would be able to take a girlfriend who can barely move. I just want this to stop!

July 30:
I think the reason I have been so sick lately is that I ran out of my Florinef on Sunday. I am praying that this is the reason why! My doctor is out of his office until Thursday but luckily his nurse was able to give me a two day prescription to hold me over. We will find out tomorrow if it is Gage or my meds making me sick. I am hoping its the meds!

July 31:
Thank Goodness!!! It was the meds! I am feeling much better today!!! I am so glad that I am ok! I am taking today slow just to be sure but I hope I will be back to my 'normal' self tomorrow!

August 1:
I am back! Thank the Lord! Today Gage and I went on a trip to Petsmart. I had to sit down a few times since it was just him and me and I didn't have my chair. He is a good dog unless we are at Petsmart, at Petsmart he is a yappy annoying little guy! Tomorrow I think I am going to take him on another outing.

August 2:
Today Gage and I went on a fun outing! We started out at a really cool dog store in Austin called Lofty Dog. I love there stuff and so did Gage. We spend an hour and a half there so he could play with a scotty that was there. After that we went to the The Domain. He is allowed to come in to the stores with me there. It was a long trip but fun! When I got home my knees where swollen and very hot to the touch. They have a nasty rash that I get from over use. It burns and is very uncomfortable. I got in contact with my POTS/OH doctor for more meds but he wanted to see me first. But since we don't know when he can see me next he gave me a two week prescription to hold me over again. I hope I can go see him soon! I went to my friend's house tonight. I was suppose to spend the night but that didn't work out and I wound up going home at 2 AM. I learned my lesson and will not be doing that again!

Forever Flexible,
Hallie Rose

July 23 to July 26, 2012

Since we got home from the resort Monday everything has been really busy but really great!

On Monday, we went straight to infusion. Sadly, my port is still swollen and painfully to access. I cannot wait till it is healed and easy to use. Ben was a great little brother and stayed with me during my infusion! That night I went on a date with a super great guy. I am very excited to keep seeing him.

On Tuesday we found out that the dog in Dallas won't be a good match for us. We are going to look for a dog that is closer to us.

Wednesday was a great day! We found a dog at a Rescue. His name is Gage and he is so cute! On Thursday at 7:30 he is going to come over for a visit to see if he would be a good fit for us. I am hoping he is but I feel bad that I got him pink stuff! I had that guy over to meet my family and they really like him. Hopefully I can see him again this week.

Thursday when I went to infusion my bp was 111/77!! After I started seeing this guy I have become a lot happier and more relaxed. It is great! Gage is a wonderful dog and we have decided to keep him on a two week trial. Belle, our cat, was terrified of him but we are hoping that she will learn that he is small and nice. He is crate trained so he will have to sleep in there even though I would love to have him in bed with me.

Forever Flexible,
Hallie Rose

Guest Poster Adrienne McGuire

Diagnosis: Known At age 36, a 20 year long search for what ails me ended when I was finally diagnosed with Ehlers-Danlos Syndrome Type III. I should probably say that the search only switched paths, as I now have something new to learn about, but at least I have a diagnosis. Since I was 16 years old (and even before then, but not regularly) I went to a plethora of different types of physicians, asking them why I was in so much pain, why I kept fainting, why my heart beat fast, why I got dizzy a lot, why all of my muscles shook and twitched, and why my back felt like the back of a much older person. And since my blood work always looked “normal”, some doctors chalked it up to anxiety; others called it fibromyalgia. But I knew there was something else going on.Hindsight is 20/20; isn’t that what they always say? Looking back now, I can see that my EDS and POTS problems started when I was young – around 9 or 10. I had several fainting spells and had developed an inability to withstand any amount of heat without passing out or nearly passing out and having a racing heart for hours. I had horrible shoulder and back pain as young as 13 and have ever since. My neck has been in and out of spasm since age 20. At age 22 my entire body began to twitch, which I now know was from overuse. By 25, my legs were constantly aching so badly I was in tears daily. And that was eleven years before my diagnosis.Last year I had to take some time to grieve my old life and say hello to the new me with limitations when a rheumatologist told me I have the hypermobile form of EDS along with a case of POTS. Both of these syndromes fluctuate with hormones and are found more often in women than in men. As I educated myself about the disorder, I realized that the only way to control the symptoms was to slow down and become more aware of my body and its signals. I allowed myself to mourn my lost abilities to run, hike, and do cartwheels. That was 9 months ago. Today, I am moving forward.It’s definitely true that, if you have a connective tissue disorder, you will lose some of your physical abilities, but there is also an endless potential to gain mental strength, focus, and perspective. I could no longer work as a legal assistant so I set my sights on being productive in an alternative way. I began pacing myself, therapy (both physical and mental), trial and error to find effective medications and supplements, meditation, and learning how to ask for help. I now wear silver ring splints all the time and other supports as needed for wrists, knees, elbows and neck. I take medications that control my POTS symptoms which means I can get out more, albeit in short bursts. I recently talked to my doctor about getting a wheelchair for long outings. But, overall, when I look at my life now, with a disability, I am so much happier and grounded than I ever was before.Adrienne McGuire is a writer, website consultant and wellness enthusiast who abandoned the corporate world to create a life that worked for her. Her journey down the road less traveled took her to www.dailypath.com , where she is now an integral part of the writing team.

July 22

I could not sleep this morning! I woke up at 6 and could not get back to sleep. At 7 I finally got fed up of laying in bed and went to hang out in the lobby. After sitting in a chair for awhile I decided I wanted to go sit somewhere else. But as I was getting up my ankle dislocated and I fell, hitting a chair where a young girl was sitting. I throughly freaked out her and her little brother. I felt so bad for scaring them!

Golfing in the heat and humidity is not a good plan if you have POTS. My family went golfing today and I wanted to go with them but just drive a cart. After the first hole I started to get nauseas but I wanted to try and stick it out. By the third hole I knew I needed to go back to the room or else I would get much worse. The hotel was nice enough to drive me to the room from the hole. If you don't take proactive action with POTS you will get much worse. I want to have fun on this trip and not spend it being a zombie, so i need to be moderate and proactive.

I got a very exciting email today! There is a Maltese available in Dallas that is the right age, 10 months, is house broken, and is a good price! I am going on wednesday to meet and hopefully take her home!

The lazy river was really fun today! Ben had lots of funny with the ladies and I had fun seeing him happy. After we spent sometime there we went to the spa again, girls to one side and boys to the other. My mom and I went into this amazing steam room that smelled so magical! There was a really cool shower there that is called a vichy shower. It has seven shower heads, the normal one and then three on either side of your body. It feels so cool! It was great that they had a shower chair available. Whenever I use a public shower chair I put a towel over it just so I don't directly have to touch the seat.

Sadly today was our last full day at the resort. Hopefully we will come back for another stay.

Forever Flexible,
Hallie Rose

July 21, 2012

We are having such a wonderful time!

Apparently, I snored insanely loud last night. So loudly that my brother went and slept on the floor in the bathroom! I have to sleep on my back until my port-a-cath heals a bit more, it is still tender to touch or put a lot of pressure on. I hope I don't snore terribly tonight! The poor kid needs some sleep.

Today was really great! In the morning my mom and I went to Spa Django for some mother daughter time. She had a wonderful massage and pedicure and I had a pedicure and manicure. It was so wonderful and relaxing!! I am hoping to starting getting them more regularly.

My brother and father went rock climbing and zip lining! They said they had a great time! Ben was able to climb the hardest part of the rock wall that no one else was. When they zip lined, they said it was scary to put all their faith in a rope and jump off. But once they did it was amazing!

We spent the rest of the day as a family. We went around the lazy river as a group once and then I got out and let them go some more. While they were doing that I made friends with a man and his adorable baby, who is turning one tomorrow, because all the other chairs were taken and he had an extra one.

After a nice nap in the room we went back to the spa to spend some time in the relaxation rooms. They are so nice and peaceful. I would love to have one in my house!!

After dinner we went to see the animals that they keep at the resort. There were the coolest llamas in pens with some donkeys.The white one would let you pet it and even put his face through the fence to kiss me! That was so neat!!!

Because this would have been a lot of walking in heat, I was pushed in the wheel chair everywhere. When I use my wheel chair it makes it easier for me to have more energy to do more things. Also taking a nap during the day helps me a lot. It is important to be proactive in not doing too much. Even though doing the lazy river one time wasn't too much I knew that going around again would actually be too much and it would be much smarter to conserve my energy by sitting out and watching instead.

Forever Flexible,
Hallie Rose

July 20, 2012

Thankfully my infusion went very well! Tammy, the oncology nurse from last time, came by to stick my port and she got it on her first try! This morning when I woke up my incision had turned yellow but it is not leaking anything so we are hoping it is just a bruise.

I am terribly sadden to hear about the shooting in Colorado. It is shocking that a person could do that! All the survivors stories have been so sad and harrowing. It would be shocking to go to an exciting midnight premiere and instead of seeing a movie walk in to the most terrifying minutes of your life. I hope all the injured recover, the families of the deceased can get justice, and that the survivors can get over what they saw.

Today we left for a family weekend at Lost Pines resort. It is so peaceful here, but the pines really are lost because we have only seen three. There is a neat lazy river, golf course, great food, a spa, and lots of other fun stuff. Right when we got here we all jumped into our swim gear and went to the lazy river! It was hard to keep the port from getting wet but we had fun! I went around twice before getting tired, which is a lot for me!! (And then when we got back to the room I took a shower all by myself and without a shower chair! I haven't done that years!) We went dinner at a really great place and I got to eat ice cream after. The chef is going to make me pudding tomorrow so I can eat with everyone!

I feel really bad for Ben. He does not seem to be having fun and is in a bad mood. I wish I wasn't such a problem and we could do normal silly kid things together. I know it is hard on him and he is doing his best!

While we were walking (and getting pushed) past a cowboy who was singing he pulled me over and sang a willie nelson song to me about me being an angel to close to the ground. It was so sweet and touching. After I hugged him and he kissed my forehead. That will always be something I remember.

Tomorrow I am going to be posting a guest blog along with mine! It should be fun to read!!

Forever Flexible,
Hallie Rose


P.S. I will be posting trip pictures when I get back!