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
Wednesday, June 27, 2012
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
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