I cannot wait till my nerve blocks next week! My pain is definitely coming back but being with Matt makes it easier to relax and not think about it.
I started the morning off with a head/ back ache and my face was numb. I took my pain meds and slept it off in time to bring Matt lunch and go to my infusion.
Unluckily, by the time I got back to his house I was exhausted again. Tonight we were all invited over to his friends mom's house for dinner. I am hoping that I can go but I don't think that I will be able to. This will be my first time that my illness will be involved in our relationship. I am very nervous about telling Matt even though I know he will understand.
And for everyone who knows my brother, Ben, he had his first high school football scrimmage today! While he was playing receiver, he was tackled and hurt his elbow. We are hoping that by tomorrow everything it back to normal!
Forever Flexible,
Hallie Rose
Friday, August 24, 2012
Tuesday, August 21, 2012
Happiness
Lately, I have had nothing to post about because I have been very happy. My life has become much happier since I started dating Matt and adopted Gage.
My EDS pain has been much worse lately and I have started taking Hydrocodone on a daily basis. Luckily, Matt understands that I need to take the medicine in order to function and is okay with me sleeping a lot.
Today I decided to try a bite of a cheese stick and I was not near as terrible as I had imagined it would be. It takes about four hours for my medicine to work so my stomach is moving pretty slow still. The cheese stick did cause pain but it could have been much worse. I am very excited to go see the doctor in Dallas next week who will be able to help with my belly!
Forever Flexible,
Hallie Rose
My EDS pain has been much worse lately and I have started taking Hydrocodone on a daily basis. Luckily, Matt understands that I need to take the medicine in order to function and is okay with me sleeping a lot.
Today I decided to try a bite of a cheese stick and I was not near as terrible as I had imagined it would be. It takes about four hours for my medicine to work so my stomach is moving pretty slow still. The cheese stick did cause pain but it could have been much worse. I am very excited to go see the doctor in Dallas next week who will be able to help with my belly!
Forever Flexible,
Hallie Rose
Saturday, August 11, 2012
August 10
Well today I managed to pick fights with everyone in my family before 10 am. I am sure I would have fought with my cat and dog if they could talk. I was hoping that my RFA wouldn't turn me into this but oh well!
Thankfully my family got a break from me when I went to my infusion. It was strange not having my normal nurse Kim there but the fill in nurses were very sweet! I realized that when the Olympics are over I am going to have nothing to watch on tv during infusion! Typically, I have infusion from 12 to 2:30; which means that now I am going to have to watch terrible daytime tv! Thank goodness for my iPad! I hopefully will be able to stream Netflix. I don't remember if I said this before but because of EDS carrying around my laptop is too hard on my shoulders. I think it is a smart plan for us EDSers is to look into getting light netbooks or look for a tablet from the ever growing selection. When choosing one it is important to think about what you want it to do and what other devices you want it to sync to. For myself, I don't need any word processing functions (because I am out of school) and I want mine to sync to both my phone and computer (both apples) so an iPad was the best choice for me. But for a student, a net book might be a better idea so that you can have access to a word proccesser and have most of the functions of a normal laptop. I recommend checking out the device through Cnet.com, I am no expert but they have not steered my wrong yet.
I am going to be doing two posts today. One is my blog and one is the pictures of my braces and information about them.
Forever Flexible,
Hallie Rose
Thankfully my family got a break from me when I went to my infusion. It was strange not having my normal nurse Kim there but the fill in nurses were very sweet! I realized that when the Olympics are over I am going to have nothing to watch on tv during infusion! Typically, I have infusion from 12 to 2:30; which means that now I am going to have to watch terrible daytime tv! Thank goodness for my iPad! I hopefully will be able to stream Netflix. I don't remember if I said this before but because of EDS carrying around my laptop is too hard on my shoulders. I think it is a smart plan for us EDSers is to look into getting light netbooks or look for a tablet from the ever growing selection. When choosing one it is important to think about what you want it to do and what other devices you want it to sync to. For myself, I don't need any word processing functions (because I am out of school) and I want mine to sync to both my phone and computer (both apples) so an iPad was the best choice for me. But for a student, a net book might be a better idea so that you can have access to a word proccesser and have most of the functions of a normal laptop. I recommend checking out the device through Cnet.com, I am no expert but they have not steered my wrong yet.
I am going to be doing two posts today. One is my blog and one is the pictures of my braces and information about them.
Forever Flexible,
Hallie Rose
Thursday, August 9, 2012
August 9
Time for my next RFA! Back in June I had an RFA on my right side and now it is time to get it done on my left. I hate this procedure! It is not a big deal but it is painful because they cannot use numbing until they know if they have the probes in the right spot. This time I was a huge baby! I cried a bit in the beginning and then when they asked if I could feel something I said I could and they hadn't started yet! Luckily an RFA only takes about 40 minutes and the bad pain is only for the first 15, so it isn't terrible. For the day after my procedure, I am a horrible person! ( I hope I am not too terrible tomorrow) I pick fights with everyone over nothing and I whine and complain the whole time! Since a lot of us EDSers wind up taking lots of meds over our lifetimes so we can suppress some of our joint and body pain, I like getting RFAs to keep extra toxins out of my liver.
Forever Flexible,
Hallie Rose
Forever Flexible,
Hallie Rose
Tuesday, August 7, 2012
August 7
Luckily, when I woke up this morning my back was not near as severe as it was last night! Just to be safe I decided to stay in bed and rest today.
After watching countless hours of Burn Notice, I thought it would be safe to take a shower for Matt's house. While I was rinsing off I hurt my back even worse then before! My sweet boyfriend just relaxed with me all night and I am hoping that tomorrow when I wake up I will be feeling better.
I got the results of my B12 test from my pcp. She said that even though I have been giving myself injections for the last 4 months (for the first week I got shots everyday, then for the next 3-4 weeks it was once a week and then it was once a month for three months) it has not raised my levels enough. When we started the shots my levels were 218 and now they are 280, but they are supposed to be at least 400. For the next 3 months I need to give myself the shots once a week and then get my levels rechecked. Hopefully, my levels will get more stable and I won't have to do these injections forever!
Forever Flexible,
Hallie Rose
After watching countless hours of Burn Notice, I thought it would be safe to take a shower for Matt's house. While I was rinsing off I hurt my back even worse then before! My sweet boyfriend just relaxed with me all night and I am hoping that tomorrow when I wake up I will be feeling better.
I got the results of my B12 test from my pcp. She said that even though I have been giving myself injections for the last 4 months (for the first week I got shots everyday, then for the next 3-4 weeks it was once a week and then it was once a month for three months) it has not raised my levels enough. When we started the shots my levels were 218 and now they are 280, but they are supposed to be at least 400. For the next 3 months I need to give myself the shots once a week and then get my levels rechecked. Hopefully, my levels will get more stable and I won't have to do these injections forever!
Forever Flexible,
Hallie Rose
August 6
After I dropped Gage at home from our sleep over at Matt's I headed out to my appointment with my PCP. It was just a checkup from my ER visit. She gave me orders to get my B12 levels checked out later in infusion.
Infusion was uneventful. The sticks are much less painful and now that we stopped using tegaderm over the port site I don't get the terrible rash and itching. I am so thankful that my POTS/OH is helped by these infusions.
When I left infusion I bent over in my car to grab something and I was sitting back up I wrenched my back. I could not even sit up straight the whole ride home and turning the wheel sent bolts of pain down my arms. After I got home I could barely move and had to spent the rest of the night on pain meds and muscle relaxants in bed. I hope that by tomorrow it gets better! I do not need a new pain to learn to deal with!!
Forever Flexible,
Hallie Rose
Infusion was uneventful. The sticks are much less painful and now that we stopped using tegaderm over the port site I don't get the terrible rash and itching. I am so thankful that my POTS/OH is helped by these infusions.
When I left infusion I bent over in my car to grab something and I was sitting back up I wrenched my back. I could not even sit up straight the whole ride home and turning the wheel sent bolts of pain down my arms. After I got home I could barely move and had to spent the rest of the night on pain meds and muscle relaxants in bed. I hope that by tomorrow it gets better! I do not need a new pain to learn to deal with!!
Forever Flexible,
Hallie Rose
Monday, August 6, 2012
Weekend (8/4-8/5)
I had a wonderful weekend!
Saturday:
We decided to go as a family (and dog) to the mall and pet store. But after the pet store I realized that I needed to rest still from the day before. I spent the rest of the day in bed just resting. With POTS/OH it is important to prepare for the future and not overdue, especially when you have plans for the next night.
Sunday:
Gage and I slept over at Matt's house. Since Matt lives fifty minutes away it is much healthier for me to just stay the night and go to bed on time. It is very important to take care of your body while having fun.
Packing for a sleep over takes a lot of prep with an illness. You have to make sure to have things for every situation. It is important to bring enough meds for the stay and a day longer. In my case I bring:
While on the phone with them it is a good idea to ask if they have any ice packs frozen and if they have heating pads available for use. If they don't have any frozen ice packs it is a good idea to invest in some instant ice packs or if you are going to be at that house a lot ask if it would be okay if you could leave some ice packs in their freezer. Some ice packs double as heating packs if you heat them up in the microwave, otherwise you could bring a cheap plug in one or one that heats up in the microwave made with rice.
If your illness causes you to have a lot of swelling it is a good idea to bring over some compression bandages, compression socks, or compression tape. I like to wear compression stockings for my POTS/OH and compression tape/bandages for my joints when they start to swell with my EDS.
Last but not least it is very important to tell the family what you are dealing with. They don't need to know everything, just what could affect them during your stay there. It is important to tell them if you are at risk for seizures or for passing out. Tell them if your doctor's contacts are in your phone or if you have them on a separate sheet of paper. I also tell people that I don't want an ambulance called if anything happens to me that has to do with my illness but that is just personal preference. Also, make sure that your family or loved ones know where you are and have a contact number of the place to reach you at.
With illness it is important to feel like you have been able to get away from it even if it was just from a day but it is important to do this safely.
Forever Flexible,
Hallie Rose
Saturday:
We decided to go as a family (and dog) to the mall and pet store. But after the pet store I realized that I needed to rest still from the day before. I spent the rest of the day in bed just resting. With POTS/OH it is important to prepare for the future and not overdue, especially when you have plans for the next night.
Sunday:
Gage and I slept over at Matt's house. Since Matt lives fifty minutes away it is much healthier for me to just stay the night and go to bed on time. It is very important to take care of your body while having fun.
Packing for a sleep over takes a lot of prep with an illness. You have to make sure to have things for every situation. It is important to bring enough meds for the stay and a day longer. In my case I bring:
- PRN:
- Blood Pressure
- Nausea
- high strength (puts my to sleep)
- medium strength (works for 2.5 to 3 hours)
- low strength (works for an hour)
- Pain
- high strength (same med but different doses)
- low strength
- Muscle Relaxant
- Daily Meds
While on the phone with them it is a good idea to ask if they have any ice packs frozen and if they have heating pads available for use. If they don't have any frozen ice packs it is a good idea to invest in some instant ice packs or if you are going to be at that house a lot ask if it would be okay if you could leave some ice packs in their freezer. Some ice packs double as heating packs if you heat them up in the microwave, otherwise you could bring a cheap plug in one or one that heats up in the microwave made with rice.
If your illness causes you to have a lot of swelling it is a good idea to bring over some compression bandages, compression socks, or compression tape. I like to wear compression stockings for my POTS/OH and compression tape/bandages for my joints when they start to swell with my EDS.
Last but not least it is very important to tell the family what you are dealing with. They don't need to know everything, just what could affect them during your stay there. It is important to tell them if you are at risk for seizures or for passing out. Tell them if your doctor's contacts are in your phone or if you have them on a separate sheet of paper. I also tell people that I don't want an ambulance called if anything happens to me that has to do with my illness but that is just personal preference. Also, make sure that your family or loved ones know where you are and have a contact number of the place to reach you at.
With illness it is important to feel like you have been able to get away from it even if it was just from a day but it is important to do this safely.
Forever Flexible,
Hallie Rose
Friday, August 3, 2012
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
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 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
Monday, July 23, 2012
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
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
Sunday, July 22, 2012
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
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
Saturday, July 21, 2012
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
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
Friday, July 20, 2012
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!
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!
Thursday, July 19, 2012
July 19, 2012
Last night was a long night! My brother had his friend stay the night and being teenagers they wanted to stay up all night! Of course they couldn't stay up quietly -_-. I am glad Ben is finally getting a chance to have fun with his friends! He has another friend staying tonight! I am just trying to keep my space, today is a painful day.
I am very nervous about going to infusion tomorrow! I know they will try their best but the pain last time was a lot and I am not looking forward to going through it again.
My sweet friend Jacy came over today! We hung out, watched a movie, and she got some food! It was really fun to spend time with her again. She is going off to start college in the fall! I am going to miss her but I am excited that she Is going to have fun. She is really a blessing to have as a friend!!!
My other friend just found out she is pregnant! I am so excited for her baby!!! She is going to be a wonderfully mommy!!!!!!! I
Cannot wait to meet the baby! I cannot wait to be an auntie!! <3
Forever flexible,
Hallie Rose
I am very nervous about going to infusion tomorrow! I know they will try their best but the pain last time was a lot and I am not looking forward to going through it again.
My sweet friend Jacy came over today! We hung out, watched a movie, and she got some food! It was really fun to spend time with her again. She is going off to start college in the fall! I am going to miss her but I am excited that she Is going to have fun. She is really a blessing to have as a friend!!!
My other friend just found out she is pregnant! I am so excited for her baby!!! She is going to be a wonderfully mommy!!!!!!! I
Cannot wait to meet the baby! I cannot wait to be an auntie!! <3
Forever flexible,
Hallie Rose
Wednesday, July 18, 2012
Port-a-cath and July 18, 2012
Well the procedure went very well!!! After I went under they tried to stick me a few times before they got it but otherwise it went great! They two days recovering was tough. I took a lot of pain meds because it was hurting a ton and they made it a lot easier.
Today I went to infusion to try to use the Port and for an hour they could not get it to work! It was so terrifying. Eventually, we got a new nurse to try and stick me. Thankfully on the first stick she got it! The swelling was bad and we couldn't get it through with a short needle. Now we know that we have to use a longer needle during regular infusions. I am so glad that it is working!
Forever Flexible,
Hallie Rose
Today I went to infusion to try to use the Port and for an hour they could not get it to work! It was so terrifying. Eventually, we got a new nurse to try and stick me. Thankfully on the first stick she got it! The swelling was bad and we couldn't get it through with a short needle. Now we know that we have to use a longer needle during regular infusions. I am so glad that it is working!
Forever Flexible,
Hallie Rose
July 15, 2012
Yesterday was very uneventful so I didn't want to write a post of nothing!!!
Today is Ben's birthday!!!! I love this guy so much! He has done so much for me. I cannot imagine life without him. We are going to see The Dictator for his birthday! That is a very colorful movie to see as a family and I hope we won't ever have to see one like that again!
Tomorrow I am going in for my port-a-cath at 6am! I hope it goes well!!!
Forever Flexible,
Hallie Rose
Today is Ben's birthday!!!! I love this guy so much! He has done so much for me. I cannot imagine life without him. We are going to see The Dictator for his birthday! That is a very colorful movie to see as a family and I hope we won't ever have to see one like that again!
Tomorrow I am going in for my port-a-cath at 6am! I hope it goes well!!!
Forever Flexible,
Hallie Rose
July 13, 2012
After over a year and a half of growing my hair back from shaving it I decided to get my first hair cut! I also have decided that I want to get some pink 'peekaboo' highlights! After moving to Texas, in 2004, our family has always been going to Breeze Salon. Now we all use different ones; my dad the Cedar Park, my mom in Georgetown, and me in Round Rock. They all are great though!! My hair turned out great!!! Even though they didn't have the hot pink, they mixed red and light pink to get a pretty color! I am so glad that I decided to get them. Because of my illnesses it is hard for me to do my hair every day and now when I twist it back I can have a cute little pink!
Today is the last day that I am going to get my infusion by IV! I am excited and nervous at the same time about getting the port on Monday. I know the procedure will go well but I am nervous about the after care. But anyway, I drove alone for the first time today! After infusion it was storming really badly again and I decided to wait out the storm by getting a cute dress at JCPenney's. The dress will be a slip-on and easy to wear on procedure days!
I realized that the reason it takes 3 hours for my pills to work is because my gastroperesis slows down my belly that much! I hope that soon I will be able to get it taken care of!
Forever Flexible,
Hallie Rose
Today is the last day that I am going to get my infusion by IV! I am excited and nervous at the same time about getting the port on Monday. I know the procedure will go well but I am nervous about the after care. But anyway, I drove alone for the first time today! After infusion it was storming really badly again and I decided to wait out the storm by getting a cute dress at JCPenney's. The dress will be a slip-on and easy to wear on procedure days!
I realized that the reason it takes 3 hours for my pills to work is because my gastroperesis slows down my belly that much! I hope that soon I will be able to get it taken care of!
Forever Flexible,
Hallie Rose
July 12, 2012
Today we went shopping for my brother's birthday cards at Walmart! We found some really great cards that I know are going to make his birthday special. While we were there I decided to get a new swim suit bottom for my friend's birthday party. I was using my walker because it really helps keep me stable, I moved away from it for just a second and my knee gave out. As I was falling I caught my face on a clothing rack and got myself a nice shiner!
As planned, we are celebrating Ben's birthday tonight! We started with an amazing dinner at Maggiano's Little Italy! It is an amazing Italian restaurant that is set in the 1940s. The food, so my family says, tastes amazing and the left overs they ate for four more meals!
After dinner, we headed down to 6th street in Austin to see Esther's Follies! It was so much fun! When we bought the tickets we mentioned that it was Ben's Birthday and they called on him in the show! The show was great. It had magic, music, comedy skits and just a bunch of fun packed in to about two hours! I would go back anytime and am so glad that Ben shared this show with me.
Forever Flexible,
Hallie Rose
As planned, we are celebrating Ben's birthday tonight! We started with an amazing dinner at Maggiano's Little Italy! It is an amazing Italian restaurant that is set in the 1940s. The food, so my family says, tastes amazing and the left overs they ate for four more meals!
After dinner, we headed down to 6th street in Austin to see Esther's Follies! It was so much fun! When we bought the tickets we mentioned that it was Ben's Birthday and they called on him in the show! The show was great. It had magic, music, comedy skits and just a bunch of fun packed in to about two hours! I would go back anytime and am so glad that Ben shared this show with me.
Forever Flexible,
Hallie Rose
Thursday, July 12, 2012
July 11, 2012
It turns out that all the extra potsieness from yesterday was from dehydration. Getting the saline infusion helped so me much! Like my parents say, I perk up like a wilted flower who finally got watered. However, my memory is slipping because I haven't been able to take my magnesium. All the pills are hard on my stomach so I haven't been able to handle any pills that were not vital to take. I need to figure out someway to start taking them again!
One of the worst parts of pain/POTS/EDS/ or really anything that causes discomfort for a long period of time is something that most people don't think of. It is how we treat our loved ones. We begin to become short and snippy with them because we are hurting, and since they love us they let it go. I didn't even notice that I had become really mean to my family while I was hurting until my brother mentioned it to me. Speaking from my own personal experience, I try my hardest to show my family my appreciation for them when I am doing well, but I forgot to try when I am not. Thank goodness Ben told me that I was being harsh to with everyone! Now I am going to work harder on being nice, even through my worst times. Because they deserve that after everything they have been through.
Someone very important to me taught me that there is a secret to happiness. Even in the saddest of times there is a way to not be sad all the time, it might not be easy but it is better the wallowing all day. If you set aside five to ten minutes a day to feel sad and when the time is up it is time to move on to doing your daily activities. At first this was hard for me, but after I learned that during my time It was helpful if I did some self expression in artwork or photography. Taking pictures is my favorite way. I love to be able to capture a moment and be able to tangible have it with me forever.
Even though I have been setting aside time for myself it has been really hard to stay positive. So I have found a new way to really help myself think about all the good stuff in my life. The things don't have to be big or important to other people, they can just be something personally special. I usually start my list of by saying things along the lines of:
I am grateful
These things are simple but easily forgotten. Thinking about all the wonderful things in life makes me smile. It also helps me to remember that no matter what happens not everything is going wrong, there is always something, no matter how small, going right.
Today was my first day back driving in months! My dad agreed to let me drive to my infusion and he would drive back. The farther we got away from the house the harder the rain poured. By the time we were almost on the highway the lightning was so close, it seemed like it was right next to the highway! The water was so deep that the car was hydroplaning on a lot of spots on the road. By the time we finally got there, we my blood pressure was 165/83.
Infusions, for me, last about two hours. That is one hour per bag. During infusion today I kept myself entertained by playing minesweeper and listening to music. While I was listening to music I got to talk to my half brother Mason which so great! I got to talk to him about himself and about our dad, by the way I am adopted. I found out that he is turning 16 this year! Sadly, he does have some health problems too. But I am praying that he will grow out of them. After I got home from my infusion, he and I were still texting because we have a lot of time to catch up on!
On Sunday my brother turns 15 years old! For his birthday he went to the movies with four friends yesterday and tomorrow night we are going to a nice restaurant and to a comedy, Esther's Follies. He went with a group of guys in february and ever since he has returned home he has been begging us to take us there! I hope it will be just as good as he remembers!
Forever Flexible,
Hallie Rose
One of the worst parts of pain/POTS/EDS/ or really anything that causes discomfort for a long period of time is something that most people don't think of. It is how we treat our loved ones. We begin to become short and snippy with them because we are hurting, and since they love us they let it go. I didn't even notice that I had become really mean to my family while I was hurting until my brother mentioned it to me. Speaking from my own personal experience, I try my hardest to show my family my appreciation for them when I am doing well, but I forgot to try when I am not. Thank goodness Ben told me that I was being harsh to with everyone! Now I am going to work harder on being nice, even through my worst times. Because they deserve that after everything they have been through.
Someone very important to me taught me that there is a secret to happiness. Even in the saddest of times there is a way to not be sad all the time, it might not be easy but it is better the wallowing all day. If you set aside five to ten minutes a day to feel sad and when the time is up it is time to move on to doing your daily activities. At first this was hard for me, but after I learned that during my time It was helpful if I did some self expression in artwork or photography. Taking pictures is my favorite way. I love to be able to capture a moment and be able to tangible have it with me forever.
( I was feeling artsy today when I was taking my pictures)
I am grateful
- for the clean air I can breath unassisted
- that I can wiggle my toes
- for being able to smell the flowers
- for being able to feel the softness and warmth of a cat
- for the ability to talk and express myself unassisted
These things are simple but easily forgotten. Thinking about all the wonderful things in life makes me smile. It also helps me to remember that no matter what happens not everything is going wrong, there is always something, no matter how small, going right.
Today was my first day back driving in months! My dad agreed to let me drive to my infusion and he would drive back. The farther we got away from the house the harder the rain poured. By the time we were almost on the highway the lightning was so close, it seemed like it was right next to the highway! The water was so deep that the car was hydroplaning on a lot of spots on the road. By the time we finally got there, we my blood pressure was 165/83.
Infusions, for me, last about two hours. That is one hour per bag. During infusion today I kept myself entertained by playing minesweeper and listening to music. While I was listening to music I got to talk to my half brother Mason which so great! I got to talk to him about himself and about our dad, by the way I am adopted. I found out that he is turning 16 this year! Sadly, he does have some health problems too. But I am praying that he will grow out of them. After I got home from my infusion, he and I were still texting because we have a lot of time to catch up on!
(picture at infusion)
On Sunday my brother turns 15 years old! For his birthday he went to the movies with four friends yesterday and tomorrow night we are going to a nice restaurant and to a comedy, Esther's Follies. He went with a group of guys in february and ever since he has returned home he has been begging us to take us there! I hope it will be just as good as he remembers!
Forever Flexible,
Hallie Rose
Wednesday, July 11, 2012
July 10, 2012
This morning I went to see my primary care doctor about setting up IV saline therapy in my local hospital. Unfortunately, she doesn't have rights there and has to send me to the next town over. Luckily, there is a bus that can take me from her office to the hospital! She also set up an appointment with a surgeon so that I can get a Port-A-Cath put in on Monday. I am really excited about that appointment because I do not have very many veins left for them to use for my saline therapy. My EDS causes my veins to be very flexible and they are very small, which makes me a tough stick and the IVs they do get do not last more then a day.
I feel so bad for my family. I always ruin there plans and they won't leave me behind and go have fun! They always tell me it is okay and it isn't my fault but I know it is my fault that they aren't having fun. I wish I wasn't there burden. They deserve to have fun! After all they have been through with me it is so unfair that they do not get to go out and have fun when they want to. Hopefully soon I will be able to take care of myself so that they will be able to do things and have fun again.
Annoyingly, I am having heart pains with palpitations and I am super dizzy today. I know it is just my POTS but I was hoping that these feelings would go away when my POTS became more normal. It is not a huge deal though, I know a ton of us POTSies have it and all of us hate it. Someday someone will find a way to stop it and whoever you are where ever you are you are awesome!
The nutritional drinks that we ordered in the hospital came in! I am so glad to have them again! Thank goodness I don't have to drink any more Orange Breeze. In each case of juice there is 32 servings. It costs $34 dollars per case and if you buy two cases then you have free shipping. It seems expensive but if you break it down it runs about $3.19 for a day of meals, which is a great deal.
At the 425 Round Rock Clinic Hematology & Oncology Services I started my IV saline therapy. I get 2 Liters over 2 to 3 hours 3 times a week. I felt so bad for Kim, she is the nurse running the infusion center. We called and harassed her so many times trying to get her to squeeze me in. Then after she did get me in, we had a problem with the weird type of saline that was ordered. After we finally got it straightened out, my doctor rewrote it for regular saline, we had a problem with the dose I was getting. After we got that one squared away, we had a problem with how often I could get it. Finally, we got it all done, but poor Kim had to deal with all of this! She is so sweet though and I am glad that she will be my nurse! Unfortunately, since I am such a hard stick they had to send sent me home with my IV in. I think I will be able to keep it clean and in my hand with out any problems! We will find out tomorrow, I am keeping my fingers crossed!
This sticker totally made me day!!! (my poor brother had to go to the minute clinic because he randomly developed pink eye this morning)
I thought that hippo sticker made my day but really this package I received from the Boogaards did! The sent me Lucky Bamboo!!! I hope it works!! Thank Y'all so much it really means a lot. I love it!
I feel so bad for my family. I always ruin there plans and they won't leave me behind and go have fun! They always tell me it is okay and it isn't my fault but I know it is my fault that they aren't having fun. I wish I wasn't there burden. They deserve to have fun! After all they have been through with me it is so unfair that they do not get to go out and have fun when they want to. Hopefully soon I will be able to take care of myself so that they will be able to do things and have fun again.
Annoyingly, I am having heart pains with palpitations and I am super dizzy today. I know it is just my POTS but I was hoping that these feelings would go away when my POTS became more normal. It is not a huge deal though, I know a ton of us POTSies have it and all of us hate it. Someday someone will find a way to stop it and whoever you are where ever you are you are awesome!
The nutritional drinks that we ordered in the hospital came in! I am so glad to have them again! Thank goodness I don't have to drink any more Orange Breeze. In each case of juice there is 32 servings. It costs $34 dollars per case and if you buy two cases then you have free shipping. It seems expensive but if you break it down it runs about $3.19 for a day of meals, which is a great deal.
At the 425 Round Rock Clinic Hematology & Oncology Services I started my IV saline therapy. I get 2 Liters over 2 to 3 hours 3 times a week. I felt so bad for Kim, she is the nurse running the infusion center. We called and harassed her so many times trying to get her to squeeze me in. Then after she did get me in, we had a problem with the weird type of saline that was ordered. After we finally got it straightened out, my doctor rewrote it for regular saline, we had a problem with the dose I was getting. After we got that one squared away, we had a problem with how often I could get it. Finally, we got it all done, but poor Kim had to deal with all of this! She is so sweet though and I am glad that she will be my nurse! Unfortunately, since I am such a hard stick they had to send sent me home with my IV in. I think I will be able to keep it clean and in my hand with out any problems! We will find out tomorrow, I am keeping my fingers crossed!
This sticker totally made me day!!! (my poor brother had to go to the minute clinic because he randomly developed pink eye this morning)
( Ha Ha I look so silly in this picture)
Forever Flexible,
Hallie Rose
Tuesday, July 10, 2012
July 9, 2012
I got my braces fit today!! I am getting my braces made at Round Rock Orthotics and Prosthetics. I really like the man that I am working with. His name is Mike Raney and he is a very educated and well versed man. The brace fitting took forever!! First we met with the Mike in one room and measured my wrists and elbows, I was very excited to find out that I am a medium size on my elbow brace! Before we moved to the next room Mike had to step out for a minute, in the hallway we could hear a small child screaming and a saw cutting. (I know the kid was having a cast removed but it was still funny.) When we moved to the next room they did four separate casts, two on my ankles and two on my knees. The casting took two hours! The only bad part about getting the casts was that they had to move my legs into painful positions and dislocate my joints to see how they dislocated, so that when they make the braces they will protect my joints in the best possible way. I picked zebra print for my ankles, pink for knees, and for the rest; wrist, neck, and elbow, I am just getting them in standard colors. I am very excited to start wearing them, I have been dislocating them a lot lately and it is so uncomfortable.
Ben was so sweet to me today. He spent the whole night watching movies with me! We watched Man on a Ledge, Spider Man 3, and Iron Man 2. I love having brother sister time. Tomorrow we are going to the new Spiderman movie with some of his friends. It will be fun!!
Forever Flexible,
Hallie Rose
Ben was so sweet to me today. He spent the whole night watching movies with me! We watched Man on a Ledge, Spider Man 3, and Iron Man 2. I love having brother sister time. Tomorrow we are going to the new Spiderman movie with some of his friends. It will be fun!!
Forever Flexible,
Hallie Rose
July 8, 2012
I realized how sluggish I am today. It was so hard to just walk to the kitchen this morning. My father decided that he was going to swim, even though it was raining with a little bit of thunder. Him being out there by himself is not fun so I decided to go swim with him! I was very proud of myself for doing my fifteen minutes of cardio exercise (water biking).
After that I even had the energy to go to the store with my mom. I brought my walker and for some reason I felt self-conscious when I got out of the car. That is not a feeling that I typically experience! As I thought about it I realized it was because there were people that I had gone to school with and I didn't want to explain what was going on with me or why I wasn't normal. Then I thought of how brave my sweet brother is. He has no qualms about being with his sister who needs special things done. He will stand by me and help me walk with my walker or push me in my chair. He is such an amazing guy. He is the best friend I could ever ask for.
Tonight my parents and I watched Dolphin Tale. The movie was so great! I loved it. It really spoke to me. Especially when the boy goes to see his cousin at the VA hospital and the cousin sends him away. The little boy says to him that it isn't just about him and that it is hard on everyone else too. When that happened I realized something, I realized that when my family says its hard on them too they don't just mean because of money or because they are missing out. It is because they are sad to see this happen because they love me. It made me feel so selfish when I realized that. From now on I am going to watch this movie when ever I am wallowing about my illness because it isn't just me. It is about everyone who loves me. I will try my hardest for them so that it won't be as hard for everyone anymore.
Forever Flexible,
Hallie Rose
After that I even had the energy to go to the store with my mom. I brought my walker and for some reason I felt self-conscious when I got out of the car. That is not a feeling that I typically experience! As I thought about it I realized it was because there were people that I had gone to school with and I didn't want to explain what was going on with me or why I wasn't normal. Then I thought of how brave my sweet brother is. He has no qualms about being with his sister who needs special things done. He will stand by me and help me walk with my walker or push me in my chair. He is such an amazing guy. He is the best friend I could ever ask for.
Tonight my parents and I watched Dolphin Tale. The movie was so great! I loved it. It really spoke to me. Especially when the boy goes to see his cousin at the VA hospital and the cousin sends him away. The little boy says to him that it isn't just about him and that it is hard on everyone else too. When that happened I realized something, I realized that when my family says its hard on them too they don't just mean because of money or because they are missing out. It is because they are sad to see this happen because they love me. It made me feel so selfish when I realized that. From now on I am going to watch this movie when ever I am wallowing about my illness because it isn't just me. It is about everyone who loves me. I will try my hardest for them so that it won't be as hard for everyone anymore.
Forever Flexible,
Hallie Rose
Hospital Time!
The day after my last post (on June 27) I was driving to Dallas with my family to see my doctor. But on the way I was getting so dehydrated that I passed out in the car again. My doctor told me to go to Medical City Hospital and he would call ahead so a room would be ready for me when we arrived. When we got there I had gotten so dehydrated that I was passing out in the lobby. When this happened they 'coded' me. This means that all the security, doctors and nurses near by rush over to get me on a stretcher and run me to my room. Because of my EDS, however, this was a big problem! Even though my parents were yelling for them to be careful because my joints sublex, the doctors and nurses main priority was to get me on that stretcher and move me. While they were picking me up all my joints were popped out of place and when I came to later my joints felt like I had been run over by a train. For the next week I spent every day getting fluids and taking pain medications. The only way I could eat was by drinking supplements and getting fed through the IV. Annoyingly, they had to redo my IV everyday. By the time I left had had 7 IVs and 3 other try spots. I had some really great things happen in the hospital though!
The first thing was that on the second day of my stay the physical therapists brought me a walker to use. It helped so much! I am much steadier when I use it because pressure is taken off my lower joints and that makes them more stable. After trying it for a few days the doctors wrote a prescription and had one delivered to my room that I could take home. I love using it. It really helps reduce stress on my lower body.
The second thing was that I found out that pain medications help my joint and stomach pain! This was such a great relief during my stay. I was comfortable for the first time in a long time! The doctors decided that it would be okay if they prescribed them to me for home use.
The third thing was that my doctor was trying a medicine called Mestinon to help my stomach. It didn't help my stomach at all. But, it did help my POTS! It lowered my blood pressure and heart rate. So now I am more of a regular potsy! I am no longer a hyper potsy, which is wonderful!
The fourth thing is that I had two great friends come visit and a great family friend. Those visits were so wonderful! Being visited in the hospital is so great because laying in a bed all day gets pretty boring.
The first thing was that on the second day of my stay the physical therapists brought me a walker to use. It helped so much! I am much steadier when I use it because pressure is taken off my lower joints and that makes them more stable. After trying it for a few days the doctors wrote a prescription and had one delivered to my room that I could take home. I love using it. It really helps reduce stress on my lower body.
The second thing was that I found out that pain medications help my joint and stomach pain! This was such a great relief during my stay. I was comfortable for the first time in a long time! The doctors decided that it would be okay if they prescribed them to me for home use.
The third thing was that my doctor was trying a medicine called Mestinon to help my stomach. It didn't help my stomach at all. But, it did help my POTS! It lowered my blood pressure and heart rate. So now I am more of a regular potsy! I am no longer a hyper potsy, which is wonderful!
The fourth thing is that I had two great friends come visit and a great family friend. Those visits were so wonderful! Being visited in the hospital is so great because laying in a bed all day gets pretty boring.
- My first visitor, who came twice(!!!), is named Nicole! She is a really great girl who is dealing with problems similar to mine and even sees the same doctor that put me in the hospital! She brought me a beautiful POTS awareness bracelet, which I haven't taken off since she gave it to me! She also brought me word puzzles and a really sweet card. It meant so much to me that she visited, Thank you Nicole!
- My second visitor is a friend from Baylor University named Kaleigh. She drove an hour and a half to see me! How special is that?! She also is dealing with some medical problems so we have a special bond. When she visited, we took a jaunt around the hospital with my family. When we were in the kids area she realized that she had been there when she was a kid! She remembered it because of the whale (in the picture below) and because at this hospital the speed limit is 11 mph, which is a wee bit strange. Thanks for visiting Ka!!! It was a ton of fun!
- My third visitor, well visitors, was from our family friends. My brother is friends with the son and my mom is friends with the mom! Overall, the family is just wonderful! They took care of our cat for us the whole time I was in the hospital. Their daughter had a dance competition up in Dallas so they brought my family their pills and extra clothes. AND they took my brother for a day of fun at a water park. This family is a God send. Thank you for all y'all have done for us!
The sixth thing was that I got some really neat goodies from my awesome family!!!!!!
(my new hippo, we named him Hugo)
(an awesome get well balloon)
(a super snuggly teddy bear)
(it's hard to see but I am wearing a hippo necklace that Ben bought me and he also bought me a hippo night light but I don't have a picture of that )
We also had some very fun and interesting times!
On the third or fourth day of my stay, there was a lot of commotion on the floor and all the nurses became super busy for an hour. Later that afternoon my nurse came in and said that a convict had been brought in and he had every kind of drug in his system. It was crazy. That night his mother was trying to spend the night with him and she got into a yelling match with the guards outside his room (but she lost the match and had to leave). For the next two days there was extra security on the floor so we decided to steer clear of his side of the hallway during our walks just in case anything crazy happened.
On the fourth of July I wanted my brother to see fireworks but he wouldn't go with out me. So we decided to figure out where the best view of some fireworks near the hospital would be and most everyone we asked told us to go on top of the main parking garage. That night at around nine we told the nurse that we were going on a walk off the floor. When we got downstairs we thought that it would be best to go out the B doors because there would be less people, but sadly when we got there the doors were locked. Now the only way to get out was the front doors! We decided to take the risk. No one noticed us!!! We got on top of the parking garage in the nick of time! I was so glad he got to see fireworks. After the fireworks we went back to the floor and none of the nurses suspected a thing! Fireworks mission was a success!!
The most important thing I learned in the hospital is that my family is amazing. My brother wouldn't leave my side until I made him! My parents stayed with me in Dallas the whole time, they just bought clothes and everything they needed at Walmart . I love my family so much.
When we checked out of the hospital we had to stay in Dallas for the night so we could go the next to my doctor for a follow up. The doctor told us that I had been taking the wrong dose of Reglan. Neither my primary care physician nor I knew that a POTS patient had to take a much lower dose then a regular person. This explained a lot! Every time I had taken my Reglan I had had an adverse reaction to it. Hopefully now when I take it at a lower dose it will help instead of making me hyper active. My doctor also told us that he was going to write a prescription for me to get IV saline therapy three times a week in my town instead of me having to drive three and a half hours to his office every time.
Sadly, my doctor didn't have time to give me an infusion in his office. So the day after we got home we had to make a trip to the ER to get my saline there. My favorite doctor, Dr. Ross Tobleman, was working. He came in and talked to my father about the Red Soxs for about 20 minutes. He is such an awesome guy! I love that he takes me seriously, most doctors don't take my case seriously because it is so complicated. Sadly, lots of POTsys and Zebras have this problem as well. It is too bad he is just an ER doc because I would love to have him as my PCP. Don't get me wrong, my PCP is already amazing but I like that Ross is so funny and caring.
Forever Flexible,
Hallie Rose
Wednesday, June 27, 2012
June 27, 2012
I didn't realize that the AC turning off would affect me as much as it did! Over the night my body temperature warmed up three degrees and left me dehydrated. I couldn't even hold down water and pills. We had a problem finding a place for my cardiologist to call in an order for IV fluids so we wound up going to a local ER. The doctor was so great!! He cracked jokes the whole time and when it came time to give me what I needed he gave it to me without asking questions! He told me that I was his easiest case of the day.
The rest of my day was great because the fluids helped a ton!!! (I don't have much to write because we are turning in earlier tonight because we are leaving for Dallas early tomorrow! I say we because my whole family is sleeping in my parents room because they have air!)
Forever Flexible,
Hallie Rose
The rest of my day was great because the fluids helped a ton!!! (I don't have much to write because we are turning in earlier tonight because we are leaving for Dallas early tomorrow! I say we because my whole family is sleeping in my parents room because they have air!)
Forever Flexible,
Hallie Rose
June 26, 2012
Most people would not think that lifting two pound weights would count as a work out, but people with EDS will understand that it definitely is. I still have problems with dislocation even when I lift something as light as that! My joints have been really bad lately, especially my knees. Using the stairs now are not just hard because of my POTS/OH, they are painful because of my joints. Speaking of joints, swimming at the end of the day really feels good on them. Being able to take all my weight off my body and just float is a very welcomed feeling!
My doctor wanted me to go to a new neurologist to get more of a neuro work up. He wants them to check for different diseases/illnesses that I fit the profile for. The neurologist he picked works in an office with an old neuro of mine, one that told me my case was too hard for him. We are worried that he will influence the new neuro and the new one will not take me on as a patient. We are going to hopefully find out soon.
It was really great that my brother and I got some bonding time today. He patiently played video games with me as I died repeatedly in every level. I wish I was better at games so we could play together more! Maybe someday =P
Today was the hottest day on record for June (in Austin), within the last 100 years, at 109 degrees Fahrenheit. Of course on that day our AC decides to die. It was 84 inside the house! Luckily, on the other side of the house we have a different AC unit, so we could go over there and get cool air. When we had to be on this side of the house we used ice packs and fans. Hopefully it will get fixed tomorrow!!!!
Forever Flexible,
Hallie Rose
My doctor wanted me to go to a new neurologist to get more of a neuro work up. He wants them to check for different diseases/illnesses that I fit the profile for. The neurologist he picked works in an office with an old neuro of mine, one that told me my case was too hard for him. We are worried that he will influence the new neuro and the new one will not take me on as a patient. We are going to hopefully find out soon.
It was really great that my brother and I got some bonding time today. He patiently played video games with me as I died repeatedly in every level. I wish I was better at games so we could play together more! Maybe someday =P
Today was the hottest day on record for June (in Austin), within the last 100 years, at 109 degrees Fahrenheit. Of course on that day our AC decides to die. It was 84 inside the house! Luckily, on the other side of the house we have a different AC unit, so we could go over there and get cool air. When we had to be on this side of the house we used ice packs and fans. Hopefully it will get fixed tomorrow!!!!
Forever Flexible,
Hallie Rose
Monday, June 25, 2012
June 25, 2012
Today was a pretty uneventful day. I did my pool exercises because today is a cardio day. I alternate between cardio and strength training everyday, I do strength training with three pound weights.
My POTS/OH made me unusually drowsy today. I could barely keep my eyes open and I kept nodding off. My EDS also was making my knees hurt a lot today. It was hard to walk around or get up out of chairs. My body was just not on my side today!!!
We found out today that the TENS vest (a TENS vest is a vest that the leads stick on instead of on your skin, this is helpful because it is hard to reach your back by yourself) that my doctor had ordered for me is not covered by insurance and would cost $350 out of pocket. So we are going to send it back.
Hopefully tomorrow is a better day!
Forever Flexible,
Hallie Rose
Catch up!
For the last few days our internet has been down so I will post all three days now!!!
June 22, 2012
Today was a good day!
My family and I went shopping. When we go shopping I use my chair because even though you are walking inside it is still a long distance. I got a pair of really great sandals called Orthoheels. Orthoheels have great arch support.
One of my old friends from high school came over to visit for a bit today. I have not had a friend over in months. Friends are hard to keep when you have a chronic illness because people, especially young people, don't understand why you can't go out when you want to or why you have to take lots of breaks or go to bed early. My friend who stopped by is great and understands. She swam with me and let me take it slow. we went out to get snow cones (which I love!) and then we came home and took a long rest on the couch. It was great to have some social time again.
June 23, 2012
Today my neck brace/pillow came in. I know a lot people with EDS say that they are bad but I have hyper extension in my neck so it is very hard for me to hold my head up for long periods of time and my doctor said this would be a good option for me. Instead of a typical brace or collar I opted for a collar that has lots of cushion and is more like a pillow. It is so comfortable! I would make sure to ask your doctor before buying one because it might not be a good option for you.
June 24, 2012
Sunday is family day!
Also it is my day for B12 shots. My mom has to help me fill the needle because I shake too much to fill the needles and usually wind up breaking them when i try to fill them up. When you get the shot you either have someone give it to you in your butt or arm or you can give it to yourself in your thigh. The last two weeks I have been giving it to myself in my thigh, all the other times I was too chicken to do it. I am not scared of needles but giving it to myself scared me.
To wrap up our family day we watched Ferris Bueller's Day Off. I had never seen that before and it was great!
For the first time in months I got to bed early (around 11:30 or 12) and slept all night!!!
Forever Flexible,
Hallie Rose
June 22, 2012
Today was a good day!
My family and I went shopping. When we go shopping I use my chair because even though you are walking inside it is still a long distance. I got a pair of really great sandals called Orthoheels. Orthoheels have great arch support.
One of my old friends from high school came over to visit for a bit today. I have not had a friend over in months. Friends are hard to keep when you have a chronic illness because people, especially young people, don't understand why you can't go out when you want to or why you have to take lots of breaks or go to bed early. My friend who stopped by is great and understands. She swam with me and let me take it slow. we went out to get snow cones (which I love!) and then we came home and took a long rest on the couch. It was great to have some social time again.
June 23, 2012
Today my neck brace/pillow came in. I know a lot people with EDS say that they are bad but I have hyper extension in my neck so it is very hard for me to hold my head up for long periods of time and my doctor said this would be a good option for me. Instead of a typical brace or collar I opted for a collar that has lots of cushion and is more like a pillow. It is so comfortable! I would make sure to ask your doctor before buying one because it might not be a good option for you.
June 24, 2012
Sunday is family day!
Also it is my day for B12 shots. My mom has to help me fill the needle because I shake too much to fill the needles and usually wind up breaking them when i try to fill them up. When you get the shot you either have someone give it to you in your butt or arm or you can give it to yourself in your thigh. The last two weeks I have been giving it to myself in my thigh, all the other times I was too chicken to do it. I am not scared of needles but giving it to myself scared me.
To wrap up our family day we watched Ferris Bueller's Day Off. I had never seen that before and it was great!
For the first time in months I got to bed early (around 11:30 or 12) and slept all night!!!
Forever Flexible,
Hallie Rose
Thursday, June 21, 2012
June 21, 2012
Today was a long day for me! I had three appointments and all were in different cities.
The first one was for custom fit braces for my joints. I am having issues with dislocations and I am spraining things a lot. For sure I am going to be getting a custom hinged ankle and knee brace. My doctor is looking for a hinged elbow brace but we have not found one we like yet. Also, I am going to get wrist stabilizers without hinges, because my wrists are too wobbly. In a week I am going to go back and have my elbows, ankles, and knees cast and measured so that they can send them to the company who makes them. I am really excited that I get to pick the color! I am planning on picking Zebra print (for EDS) for my ankles and pink for my knee braces.
The second one was a blood draw back in my home town. I saw two trainees behind the counter and told the nurse that if she wanted they could draw my blood since I am a hard stick and I don't feel pain. The trainees decided to stick me. The first one was too scared when he realized that my veins rolled and moved. The second one decided to try and he got me on the first stick! But he moved the needle and we lost it. Even though he didn't want to, I told him to push the needle in more. It worked thankfully!!
The third, and thankfully final, appointment was an RFA procedure in Waco. Radio frequency ablation (RFA) is a medical procedure nervers are ablated using the heat generated from the high frequency alternating current. I was so nervous going in to the procedure because the nurse made it sound like it would be a big deal. Luckily, when I got back there it was a lot of my favorite nurses and I got to have fun conversations with them instead of focusing on the procedure. The only uncomfortable part was when they put the needles in to find the nerves since they can't use numbing medication until they test to see if it is in the correct place. To test to see if it is in the right places they run two types of current to each needle/probe. First the run a steady pressure and then they run a pulsing one, if your leg shakes then they know it needs to be replaced. Right before they do they burning they numb you up really good and you don't feel a thing at all! I smiled the whole time, even when the needles were going on! Although, I was nervous going in so I brought a stuffed hippo with me!
Well it is time to sign off! Tonight is going to be a very long night, the numbing meds are wearing off.
Forever Flexible,
Hallie Rose
The first one was for custom fit braces for my joints. I am having issues with dislocations and I am spraining things a lot. For sure I am going to be getting a custom hinged ankle and knee brace. My doctor is looking for a hinged elbow brace but we have not found one we like yet. Also, I am going to get wrist stabilizers without hinges, because my wrists are too wobbly. In a week I am going to go back and have my elbows, ankles, and knees cast and measured so that they can send them to the company who makes them. I am really excited that I get to pick the color! I am planning on picking Zebra print (for EDS) for my ankles and pink for my knee braces.
The second one was a blood draw back in my home town. I saw two trainees behind the counter and told the nurse that if she wanted they could draw my blood since I am a hard stick and I don't feel pain. The trainees decided to stick me. The first one was too scared when he realized that my veins rolled and moved. The second one decided to try and he got me on the first stick! But he moved the needle and we lost it. Even though he didn't want to, I told him to push the needle in more. It worked thankfully!!
The third, and thankfully final, appointment was an RFA procedure in Waco. Radio frequency ablation (RFA) is a medical procedure nervers are ablated using the heat generated from the high frequency alternating current. I was so nervous going in to the procedure because the nurse made it sound like it would be a big deal. Luckily, when I got back there it was a lot of my favorite nurses and I got to have fun conversations with them instead of focusing on the procedure. The only uncomfortable part was when they put the needles in to find the nerves since they can't use numbing medication until they test to see if it is in the correct place. To test to see if it is in the right places they run two types of current to each needle/probe. First the run a steady pressure and then they run a pulsing one, if your leg shakes then they know it needs to be replaced. Right before they do they burning they numb you up really good and you don't feel a thing at all! I smiled the whole time, even when the needles were going on! Although, I was nervous going in so I brought a stuffed hippo with me!
Forever Flexible,
Hallie Rose
Tuesday, June 19, 2012
Welcome to me!
Hello! Welcome to my life.
"You are very special" is how most doctors describe me. I have some rare, unusual, invisible chronic illnesses: Postural Orthostatic Tachycardia Syndrome (POTS) which has now progressed to Orthostatic Hypotension (OH), Gastroparesis(GP),Ehlers-Danlos Syndrome (EDS), Occipital Neuralgia Fibromyalgia, Epilepsy, Insomnia, ADD, and IRLEN syndrome(correctable dyslexia). With these illnesses I had to find ways to adapt everyday activities so that I can do more with the energy I do have. Hopefully, my blog will help people use my ideas or think of their own to use.
To help with the pain in my head and back I get Occipital Nerve Blocks and Trigger Point Injections on my back every 6 weeks. Typically people get nerve blocks every 3 months but for me they don't last long enough. Today I had the procedure! My doctor doesn't use anesthetic, which is fine with me because it doesn't actually hurt. After the procedure I feel totally numb on my back and head but also super exhausted because it is a major stressor on my body. On thursday I am going back for a different procedure, Radio Frequency Ablation (RFA). I had it once in my head but I have never had it in my lower back. Honestly, I am a bit nervous about it because when I had it last time I was given 'twilight'' and this time I am not going to have anything. But I will get through it!
In the last 6 weeks or so we finally found a doctor who knows POTS and who makes you feel like everything will be ok. Dr. Suleman works at the Heartbeat Clinic (which has locations in Dallas, Mckinney, and Denton, Texas) and he sets you up with a team of doctors he works with that are amazing! He sent me to Dr. Golder Wilson to help me type my EDS and give recommendations on how to handle it. Then Dr. Suleman sent me to Ron Overberg to help me with eating. I am now on a lot of natural supplements that help a lot, they help better then prescription medications for getting stuff moving again. Suleman also sent me to their resident physical therapist, Kyle Heffner. He gave me some great exercises, but he also gave me some bad ones. He gave me exercises for people with POTS/OH and not with EDS, so the first day I did the exercise I dislocated my ankle and sprained it and then while limping I messed up my other leg's knee. Now I am going to spend a few days in the chair. -_-
My family has been planning a big road trip to the West coast for all of July. They have been planning it for months and I really want to go! Sadly, my doctors said it would be too much for me to handle; so we had to shorten the trip by a few days and fly to Las Vegas to start there. Also, the doctor said that I need to get out of the car every 45 minutes to keep my circulation going. We are taking my wheel chair so that my family can push me around when we go on long walks or I can push the chair until I need to sit. We also are bringing baby food and soup because I can't eat regular food, from the GP.
Until tomorrow,
Hallie Rose
"You are very special" is how most doctors describe me. I have some rare, unusual, invisible chronic illnesses: Postural Orthostatic Tachycardia Syndrome (POTS) which has now progressed to Orthostatic Hypotension (OH), Gastroparesis(GP),Ehlers-Danlos Syndrome (EDS), Occipital Neuralgia Fibromyalgia, Epilepsy, Insomnia, ADD, and IRLEN syndrome(correctable dyslexia). With these illnesses I had to find ways to adapt everyday activities so that I can do more with the energy I do have. Hopefully, my blog will help people use my ideas or think of their own to use.
To help with the pain in my head and back I get Occipital Nerve Blocks and Trigger Point Injections on my back every 6 weeks. Typically people get nerve blocks every 3 months but for me they don't last long enough. Today I had the procedure! My doctor doesn't use anesthetic, which is fine with me because it doesn't actually hurt. After the procedure I feel totally numb on my back and head but also super exhausted because it is a major stressor on my body. On thursday I am going back for a different procedure, Radio Frequency Ablation (RFA). I had it once in my head but I have never had it in my lower back. Honestly, I am a bit nervous about it because when I had it last time I was given 'twilight'' and this time I am not going to have anything. But I will get through it!
In the last 6 weeks or so we finally found a doctor who knows POTS and who makes you feel like everything will be ok. Dr. Suleman works at the Heartbeat Clinic (which has locations in Dallas, Mckinney, and Denton, Texas) and he sets you up with a team of doctors he works with that are amazing! He sent me to Dr. Golder Wilson to help me type my EDS and give recommendations on how to handle it. Then Dr. Suleman sent me to Ron Overberg to help me with eating. I am now on a lot of natural supplements that help a lot, they help better then prescription medications for getting stuff moving again. Suleman also sent me to their resident physical therapist, Kyle Heffner. He gave me some great exercises, but he also gave me some bad ones. He gave me exercises for people with POTS/OH and not with EDS, so the first day I did the exercise I dislocated my ankle and sprained it and then while limping I messed up my other leg's knee. Now I am going to spend a few days in the chair. -_-
My family has been planning a big road trip to the West coast for all of July. They have been planning it for months and I really want to go! Sadly, my doctors said it would be too much for me to handle; so we had to shorten the trip by a few days and fly to Las Vegas to start there. Also, the doctor said that I need to get out of the car every 45 minutes to keep my circulation going. We are taking my wheel chair so that my family can push me around when we go on long walks or I can push the chair until I need to sit. We also are bringing baby food and soup because I can't eat regular food, from the GP.
Until tomorrow,
Hallie Rose
Subscribe to:
Posts (Atom)