So I'm going back to school in February! Cancel that exclamation point because I am not excited.
I will be going in the afternoon for once class only, last period math. I am scared to death, I don't know how i am going to cope with going to school everyday when right now I just lay in bed all day feeling horrible. My mom said it may not work so at least she knows I might not be able to handle it. I really hope I can though, I miss seeing people other than my family, I miss having friends, I miss the world.
The most of the world I see these days are my back ally when I let my dog out and from what I can see from my window, thats pretty much it. It gets depressing so I am excited to get out of this house finally, excited but extreme anxiety.
Its a grade 10 class, even though I should be in grade 11. I probably won't have that many friends going back as I will only be there for an hour and a half everyday and I won't be in the same grade class as my friends I have there.
Btw, did I ever mention that this is the school that kicked me out for being sick and missing too much and then denying me back in after i filed an appeal and then finally accepting me back after getting all my doctors to demand i go back? Yeah. I am not dealing with the same people who i dealt with last time since they really screwed me over. I have a new principal I already met with and she seems really nice and helpful so far, so thats good. I am meeting with her and my new teacher soon so I really hope he is nice or else it will make this 100x harder.
Agh, I am scared.. I hate my anxiety I worry about nothing. Hope you're all doing well, haven't posted since before Christmas so i hope you guys had a good Christmas.. I really did!
Sending love to all my spoonies out there :)
Thursday, January 23, 2014
Tuesday, December 17, 2013
Where Are My Friends?
I have recently decided I am going to pretend i no longer have POTS. I posted that i was in the hospital on my Instagram page and guess how many people asked if I was okay or anything, go on guess. Thats right, zero. Not one person cared enough to even leave a message asking if I was okay or just a nice comment. So from that, I no longer have POTS to anyone other than my family. I still have them, they still care.... well... some do anyways.
Its not even that I want attention from this, I honestly just want somebody to actually care about me and maybe just wonder how I am doing. Does it seem silly?
On a good note- Only 7 more days till Christmas Eve when I leave for my Grandparents house. Excited for that. Finally excited for something, haven't felt this in quite a while.
If I don't post before Christmas then i hope you ALL have a good Christmas and hope you can spend it with your family and those who love you. :)
Merry Christmas my fellow spoonies
Its not even that I want attention from this, I honestly just want somebody to actually care about me and maybe just wonder how I am doing. Does it seem silly?
On a good note- Only 7 more days till Christmas Eve when I leave for my Grandparents house. Excited for that. Finally excited for something, haven't felt this in quite a while.
If I don't post before Christmas then i hope you ALL have a good Christmas and hope you can spend it with your family and those who love you. :)
Merry Christmas my fellow spoonies
Friday, December 6, 2013
UPDATE:
Sorry i haven't posted in months, i've been going though some things but I am back now! (i hope)
So lately i have been experiencing high blood pressure. (178/132 , 271/198, 172/113 ) Don't know what caused this but its not pleasant. I was used to dealing with the low blood pressure around 60/48. We phoned my neuro and they took me off midodrine and said to phone back in 2 weeks. When i phoned back nobody got back to me. Ugh. After around 3 weeks of being off midodrine my blood pressure has come down but it is still high, my diastolic number is never below 100. I have been in the hospital for saline and it didn't help bring it down at all. It was the same after 4 hours of laying there and my heart rate was still 120. Obviously i have not been doing so well lately.
I have also gone to my first cardio appointment. My neuro referred me after he was worried about the bradycardia i had been having. They hooked me up to a 24hr heart monitor and sent me off. They phoned back in a week and said they could see where i had passed out and that my heart rate went from the 40s to the 200s throughout the day, but that my heart rhythm was strong and steady. She told me there was nothing she could do for me. Another ugh. I am going to ask my neuro to send me to a different cardio if possible though. She didn't have any idea really what POTS is so its no wonder she can't help me. Why would my neuro send me to someone who doesn't know what POTS is? No idea. Hopefully i can go back to see him soon and ask about a new cardiologist.
Other than that, i have had a few more bad episodes of the extreme disorientation and i have been in the hospital about 6 times since i last posted.
OH! And i am no longer in school, i do online school right now. I took my self out around 1 week after my last post. So i have been doing it for 3 months now. We are going to try to put me back into school for one class a day next semester and see if that works out. I am trying to be optimistic about it but i am worried i can't handle an 80 minute class of sitting and thinking then an hour bus ride home everyday. Maybe by some miracle i will be feeling better by then and i can do one class. Maybe it will be my christmas miracle this year. *Rolls eyes for being cheesy*
Anyways, i hope all of you are doing well! Leave me some commented updating me on your health status right now :) I hope they are all positive and you guys have been doing awesome lately!
So lately i have been experiencing high blood pressure. (178/132 , 271/198, 172/113 ) Don't know what caused this but its not pleasant. I was used to dealing with the low blood pressure around 60/48. We phoned my neuro and they took me off midodrine and said to phone back in 2 weeks. When i phoned back nobody got back to me. Ugh. After around 3 weeks of being off midodrine my blood pressure has come down but it is still high, my diastolic number is never below 100. I have been in the hospital for saline and it didn't help bring it down at all. It was the same after 4 hours of laying there and my heart rate was still 120. Obviously i have not been doing so well lately.
I have also gone to my first cardio appointment. My neuro referred me after he was worried about the bradycardia i had been having. They hooked me up to a 24hr heart monitor and sent me off. They phoned back in a week and said they could see where i had passed out and that my heart rate went from the 40s to the 200s throughout the day, but that my heart rhythm was strong and steady. She told me there was nothing she could do for me. Another ugh. I am going to ask my neuro to send me to a different cardio if possible though. She didn't have any idea really what POTS is so its no wonder she can't help me. Why would my neuro send me to someone who doesn't know what POTS is? No idea. Hopefully i can go back to see him soon and ask about a new cardiologist.
Other than that, i have had a few more bad episodes of the extreme disorientation and i have been in the hospital about 6 times since i last posted.
OH! And i am no longer in school, i do online school right now. I took my self out around 1 week after my last post. So i have been doing it for 3 months now. We are going to try to put me back into school for one class a day next semester and see if that works out. I am trying to be optimistic about it but i am worried i can't handle an 80 minute class of sitting and thinking then an hour bus ride home everyday. Maybe by some miracle i will be feeling better by then and i can do one class. Maybe it will be my christmas miracle this year. *Rolls eyes for being cheesy*
Anyways, i hope all of you are doing well! Leave me some commented updating me on your health status right now :) I hope they are all positive and you guys have been doing awesome lately!
Tuesday, September 10, 2013
30 Things About My Invisible Illness You May Not Know
Since it's invisible illness awareness week and this is going around i thought i would answer the questions and i hope all of you reading it with invisible illness's also do this post and those without share it and spread awareness.
1. The illness I live with is:
POTS (Postural Orthostatic Tachycardia Syndrome).
2. I was diagnosed with it in the year:
2013
3. But I had symptoms since:
I think 2011 is when i first noticed my tachycardia but abdominal pain before that for years
4. The biggest adjustment I’ve had to make is:
Learning to limit myself and ask others for help when i need it.
5. Most people assume:
I am fine most of the time because when i put on make up i look healthy and fine and they don't understand how bad i actually feel. They also assume POTS is not serious because its not life threatening.
6. The hardest part about mornings are:
Getting out of bed without passing out. Mornings are always the worst and when i am most fatigued and have the worst tachycardia.
7. My favorite medical TV show is:
Untold Stories of the ER
8. A gadget I couldn’t live without is:
Does my computer count? I watch my favourite shows to help keep me distracted.
9. The hardest part about nights are:
The muscle pain, not being able to get comfortable. And the insomnia
10. Each day I take __ pills & vitamins.
11
11. Regarding alternative treatments I:
I have never tried it
12. If I had to choose between an invisible illness or visible I would choose:
Somedays i wish i had a visible illness when ignorant people don't realize how much pain i actually am in. But other days its nice to be able to hide if if i don't want anyone to know how i feel. 50/50 for me.
13. Regarding working and career:
I am a student right now, but thats super hard for me and i miss a lot. Last year my school asked me to leave because i was sick too much so starting a new school this year which i haven't been able to go one day yet.
14. People would be surprised to know:
I try very hard to be positive but its hard to do
15. The hardest thing to accept about my new reality has been:
Losing many friends and not being able to go out with people and live a normal teenage life.
16. Something I never thought I could do with my illness that I did was:
When i go out for long periods of time and am able to do so without fainting i am surprised, but pleasantly surprised.
17. The commercials about my illness:
Don't exist.
18. Something I really miss doing since I was diagnosed is:
Going out to hang out with friends and i miss having a social life.
19. It was really hard to have to give up:
many friends
20. A new hobby I have taken up since my diagnosis is:
Taking pictures
21. If I could have one day of feeling normal again I would:
Go to school and go out to the parties i am always missing
22. My illness has taught me:
Not to judge people by appearance. I never understood it very well being a typical teenager, but now i experience getting judged everyday.
23. Want to know a secret? One thing people say that gets under my skin is:
When people complain about being tired, there is a difference between being tired after a long day or being severely fatigued after just sitting up. When they say they know how you are feeling. Also i hate the most when people complain about things like having a cold and being in bed for 2 days.
24. But I love it when people:
I get a simple phone call or text asking how i'm doing, but only when i know they genuinely care and are not just simply curious and don't really care how i'm actually feeling. Or when people offer to do something simple without asking like offering to stay home and watch a movie with me.
25. My favorite motto, scripture, quote that gets me through tough times is:
Do not have one at the moment right now :/
26. When someone is diagnosed I’d like to tell them:
I understand what you are going through and i want them to talk to me because i DO care and will completely understand. To look for a doctor who also genuinely cares about your well being and is educated of your illness. Don't just stay with a doctor because you found him if you are not satisfied and are completely happy with him. Also to surround yourself with loving and caring people because you will need them when times get tough.
27. Something that has surprised me about living with an illness is:
How different your life can change, I didn't take POTS seriously at the beginning and i didn't think it was something i would notice it everyday. But things got worse and your life completely changes.
28. The nicest thing someone did for me when I wasn’t feeling well was:
My family bought me pink roses recently and watched my favourite show with me. I've been having an extremely rough time and it made me happy to know they care about me and want me to be happy.
29. I’m involved with Invisible Illness Week because:
I live with it everyday and it SUCKS, i want to find a cure and spread awareness to people who have been misdiagnosed and are needing treatment. People need to know about the illness's people can live with everyday. Hopefully if we spread awareness people will take us seriously and help find a cure.
30. The fact that you read this list makes me feel:
Happy :)
Thank you for reading this, if you read the whole thing. Together we can fight and find a cure and show people that we are fighting a real battle and what we have to live with everyday is serious to us and it affects us majorly.
Share this and other peoples, make your own or just talk about it.
1. The illness I live with is:
POTS (Postural Orthostatic Tachycardia Syndrome).
2. I was diagnosed with it in the year:
2013
3. But I had symptoms since:
I think 2011 is when i first noticed my tachycardia but abdominal pain before that for years
4. The biggest adjustment I’ve had to make is:
Learning to limit myself and ask others for help when i need it.
5. Most people assume:
I am fine most of the time because when i put on make up i look healthy and fine and they don't understand how bad i actually feel. They also assume POTS is not serious because its not life threatening.
6. The hardest part about mornings are:
Getting out of bed without passing out. Mornings are always the worst and when i am most fatigued and have the worst tachycardia.
7. My favorite medical TV show is:
Untold Stories of the ER
8. A gadget I couldn’t live without is:
Does my computer count? I watch my favourite shows to help keep me distracted.
9. The hardest part about nights are:
The muscle pain, not being able to get comfortable. And the insomnia
10. Each day I take __ pills & vitamins.
11
11. Regarding alternative treatments I:
I have never tried it
12. If I had to choose between an invisible illness or visible I would choose:
Somedays i wish i had a visible illness when ignorant people don't realize how much pain i actually am in. But other days its nice to be able to hide if if i don't want anyone to know how i feel. 50/50 for me.
13. Regarding working and career:
I am a student right now, but thats super hard for me and i miss a lot. Last year my school asked me to leave because i was sick too much so starting a new school this year which i haven't been able to go one day yet.
14. People would be surprised to know:
I try very hard to be positive but its hard to do
15. The hardest thing to accept about my new reality has been:
Losing many friends and not being able to go out with people and live a normal teenage life.
16. Something I never thought I could do with my illness that I did was:
When i go out for long periods of time and am able to do so without fainting i am surprised, but pleasantly surprised.
17. The commercials about my illness:
Don't exist.
18. Something I really miss doing since I was diagnosed is:
Going out to hang out with friends and i miss having a social life.
19. It was really hard to have to give up:
many friends
20. A new hobby I have taken up since my diagnosis is:
Taking pictures
21. If I could have one day of feeling normal again I would:
Go to school and go out to the parties i am always missing
22. My illness has taught me:
Not to judge people by appearance. I never understood it very well being a typical teenager, but now i experience getting judged everyday.
23. Want to know a secret? One thing people say that gets under my skin is:
When people complain about being tired, there is a difference between being tired after a long day or being severely fatigued after just sitting up. When they say they know how you are feeling. Also i hate the most when people complain about things like having a cold and being in bed for 2 days.
24. But I love it when people:
I get a simple phone call or text asking how i'm doing, but only when i know they genuinely care and are not just simply curious and don't really care how i'm actually feeling. Or when people offer to do something simple without asking like offering to stay home and watch a movie with me.
25. My favorite motto, scripture, quote that gets me through tough times is:
Do not have one at the moment right now :/
26. When someone is diagnosed I’d like to tell them:
I understand what you are going through and i want them to talk to me because i DO care and will completely understand. To look for a doctor who also genuinely cares about your well being and is educated of your illness. Don't just stay with a doctor because you found him if you are not satisfied and are completely happy with him. Also to surround yourself with loving and caring people because you will need them when times get tough.
27. Something that has surprised me about living with an illness is:
How different your life can change, I didn't take POTS seriously at the beginning and i didn't think it was something i would notice it everyday. But things got worse and your life completely changes.
28. The nicest thing someone did for me when I wasn’t feeling well was:
My family bought me pink roses recently and watched my favourite show with me. I've been having an extremely rough time and it made me happy to know they care about me and want me to be happy.
29. I’m involved with Invisible Illness Week because:
I live with it everyday and it SUCKS, i want to find a cure and spread awareness to people who have been misdiagnosed and are needing treatment. People need to know about the illness's people can live with everyday. Hopefully if we spread awareness people will take us seriously and help find a cure.
30. The fact that you read this list makes me feel:
Happy :)
Thank you for reading this, if you read the whole thing. Together we can fight and find a cure and show people that we are fighting a real battle and what we have to live with everyday is serious to us and it affects us majorly.
Share this and other peoples, make your own or just talk about it.
Friday, August 30, 2013
Isolation With A Chronic Illness
2 years ago i had a pretty good social life, i had friends who i could call anytime and hang out with. But recently i have never felt so alone. At the beginning of this year, I lost a lot of my friends, i still had some but not that many. I couldn't attend school very often so it made it hard to make friends and have a good relationship with them. I was doing okay though, wasn't complaining that much.
But around February, i dropped out of school, my illness became too much and i couldn't attend anymore. Thats when i lost most of my friends. Remember i had little to begin with and now i am down to 2 or 3 okay friends who would sometimes text me asking how i was. Slowly they stopped interacting with me at all. Except one person who still called me about once a week. I was SO grateful for her, i had never had such a good friend who cared about me.
Eventually, i lost her too. She stopped calling and started making plans to hang out with me then ditching me without telling me to go to parties and things i couldn't do. (Not that i was invited anyways) That was the hardest thing, watching her slowly slip away too. I was still getting the rare text once in a while still checking on me, until those texts stopped too.
Now, i am all alone. I still have my mom and my dog who love me and i am entirely grateful for that. Its still really hard, going through this with no support from any friends at all. I have never felt so alone, i have never BEEN so alone. Its nice to have family but having friends you can talk about different things you wouldn't talk about to your parents. I no longer can have those girl talks with my friends. I have been completely abandoned.
I wouldn't wish this upon my worst enemy. Being ill is hard enough but having no support from any friends makes it harder.
I just wish i could be better so i could start making new friends and build good relationships with them and feel loved and cared about by people other than your mom.
To be completely honest, this showed me i didn't have good friends to begin with anyways, what type of "best friend" leaves you when i needed someone the most? Maybe in the end this will be a good thing, maybe it was supposed to happen to show me i needed new friends and i didn't have very good ones. I just hope i can somehow make new ones and i'm not sure how to even do that right now. Being bedridden makes it pretty difficult to meet new people...
Tuesday, August 27, 2013
School With POTS
So i start school in a week, a brand new school.
Earlier this year in February my school basically kicked me out for missing too much. I'm still not sure that is even legal but none the less i have to go to school so a new one it is.
I'm extremely nervous because this will be my first year in school after being diagnosed (i was diagnosed in March.) I wish with all my heart i could go back to my old school with my very few friends i had and have at least a little support going through this. At this new school i know one person and she doesn't even know I'm ill (I think she will figure it out soon enough when i miss 50% of the school year though.)
I 100% know i cannot do a full 10 hour day so i am trying to arrange i go only half a day just in the afternoons. I still don't know if i will be able to do that but I have to try and if it doesn't work we will try something else. Maybe a tutor coming to my house to help with online schooling? lets not worry about that right now..
The office at this school seems very nice and they are trying to do what they can for me, so far not much though, but hey they are doing more than my old school and not just kicking me to the curb.
I still don't have anything ready for school though, oops. I need the energy to go back to school shopping which of course i do not have. Sigh..
Earlier this year in February my school basically kicked me out for missing too much. I'm still not sure that is even legal but none the less i have to go to school so a new one it is.
I'm extremely nervous because this will be my first year in school after being diagnosed (i was diagnosed in March.) I wish with all my heart i could go back to my old school with my very few friends i had and have at least a little support going through this. At this new school i know one person and she doesn't even know I'm ill (I think she will figure it out soon enough when i miss 50% of the school year though.)
I 100% know i cannot do a full 10 hour day so i am trying to arrange i go only half a day just in the afternoons. I still don't know if i will be able to do that but I have to try and if it doesn't work we will try something else. Maybe a tutor coming to my house to help with online schooling? lets not worry about that right now..
The office at this school seems very nice and they are trying to do what they can for me, so far not much though, but hey they are doing more than my old school and not just kicking me to the curb.
I still don't have anything ready for school though, oops. I need the energy to go back to school shopping which of course i do not have. Sigh..
Thursday, August 22, 2013
Saline IV Therapy
On Friday i got my very first dose of saline solution. I only got 1 bag to start with and it took about an hour and a half. It took a little longer because while i was getting the saline my hand started hurting really badly so they had to slow it down and they wrapped my hand up in a hot blanket which seemed to help. I think it was just going in too fast for my small veins.
I noticed right away after i finished that i wasn't as dizzy as i was when i went in. I didn't feel that different for about an hour, more tired from sitting for an hour. So i really thought it wasn't helping at all and i was a little upset.
Around 1 or 2 hours later i just got this major burst of energy. It was amazing i haven't had any energy the past year let alone HUGE amounts of energy. I really didn't even know what to do with myself i just kind of ran around the room i felt so good. It was the best feeling in the world having so much energy. The next day i didn't have nearly as much energy as before but i still felt pretty decent. I was able to go out for about 2 hours but then i needed to lay down for awhile to recover. The day after that i was back to feeling crappy, not as crappy as i had before the saline but still not very good.
The saline wore off super quick and i didn't get that long of a time with energy. I was kind of disappointed at how fast i felt bad again but i am still really happy at how great it worked even for just a few days.
I am definitely going to be trying this again and probably more regularly, i think the maximum was every 10 days. I am hoping this will keep me going and help boost me to get the energy i need to workout and exercise so i can start feeling better in the long run.
Here are some links talking about saline and how to talk to your doctor about getting it. I can see that its helped me some and i have read many other blogs about people getting saline who love it. I haven't seen one bad review or experience with getting saline before.
http://potsgrrl.blogspot.ca/p/in-support-of-iv-saline-therapy-for.html
http://potsgrrl.blogspot.ca/2011/08/how-to-talk-to-your-doctor-about-iv.html
I noticed right away after i finished that i wasn't as dizzy as i was when i went in. I didn't feel that different for about an hour, more tired from sitting for an hour. So i really thought it wasn't helping at all and i was a little upset.
Around 1 or 2 hours later i just got this major burst of energy. It was amazing i haven't had any energy the past year let alone HUGE amounts of energy. I really didn't even know what to do with myself i just kind of ran around the room i felt so good. It was the best feeling in the world having so much energy. The next day i didn't have nearly as much energy as before but i still felt pretty decent. I was able to go out for about 2 hours but then i needed to lay down for awhile to recover. The day after that i was back to feeling crappy, not as crappy as i had before the saline but still not very good.
The saline wore off super quick and i didn't get that long of a time with energy. I was kind of disappointed at how fast i felt bad again but i am still really happy at how great it worked even for just a few days.
I am definitely going to be trying this again and probably more regularly, i think the maximum was every 10 days. I am hoping this will keep me going and help boost me to get the energy i need to workout and exercise so i can start feeling better in the long run.
Here are some links talking about saline and how to talk to your doctor about getting it. I can see that its helped me some and i have read many other blogs about people getting saline who love it. I haven't seen one bad review or experience with getting saline before.
http://potsgrrl.blogspot.ca/p/in-support-of-iv-saline-therapy-for.html
http://potsgrrl.blogspot.ca/2011/08/how-to-talk-to-your-doctor-about-iv.html
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