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
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