Sunday, July 1, 2012
Rants of July
T-minus one month until I go back to Mayo to see my doctor. I am still having a very difficult time with exhaustion and body temperature control. I am constantly sweating! It is quite crazy.
I don't want to feel self-pity, but I do sometimes. I am frustrated when I cannot do what I want to do. I am upset when I am forced to take a nap because I can barely sit in a chair without falling asleep. I am mad when I am exhausted the second I wake up every morning after sleeping for at least 8 hours. I am frustrated that I cannot find any relief for my symptoms. I am upset when I cannot remember things that I should know. I am frustrated when I have to take multiple showers in one day because I am so sweaty. I am frustrated after I eat because I become so fatigued and brain fogged. I am nervous about if I will ever grow out of POTS. I am frustrated that I cannot talk to my friends on the phone because I am too exhausted. I am frustrated when I have to plan out my every move throughout the day so that I can conserve what little energy that I have. I am confused as to why I have all of these symptoms since I exercise every day, drink a ton of water, eat a lot of salty foods, take my medications, stay away from humidity and heat as much as possible, and rest throughout the day. I do everything I can possibly do to make my POTS symptoms more manageable, yet the symptoms are still making my life a bit difficult.
I know I have every right to feel self-pity because having POTS is very challenging. There is constantly adjusts that are needed. Even the simplest tasks can be hard to do. I once thought that taking a shower was nothing special, but now I know that I can only be in the shower for 4 to 6 minutes and then I start to feel dizzy and exhausted. I know now that I have to keep a morning routine or else I will forget something, be too exhausted to do things if I do tasks out of order, and be too sleepy if I wake up too early or too late.
I am very sick and tired of being sick and tired. I don't want to be a POTS expert, I just want to be done with it. I want to be able to talk to my friends on the phone or hang out with them rather than sitting at home and wondering what fun I am missing out on. I don't want to be a prisoner in my house anymore; I want my house to be a refuge again. I want to be able to drive, run, bike, swim, workout, shop, dance, travel, and go on adventures. I know I am still young, and there is time for me to do these things, but I am young and have the potential to do what I want if POTS wasn't holding me back.
I don't like it when people say "there's always someone worse off than you". It is almost like they diminish me by treating my pain and struggles as insignificant unless it is worse than everyone else's. Yes, there are people who have much more difficult lives than mine, but I don't want to be viewed as less strong than I am. It is so difficult to live with POTS...no doubt about that! Every second of every day brings about challenges that I don't always want to deal with. I don't want to deal with the fatigue, brain fogging, confusion, occasional constipation, muscle weakness and pain, eye pressure and pain, headaches and migraines, body temperature instability, irritability, noise sensitivity, light sensitivity, palpitations, dizziness, and joint stiffness and pain. That is a lot to deal with every day along with the usual stresses of living such as time management, having an internship, school, preparing to find a job, and living at home. Life isn't simple, but having POTS sure does complicate things!
I am strong. I know that. I make it through every day without complaining very much (which is why I like to vent like this sometimes). I still am able to push through my symptoms to get ready every morning to go to my internship two to three times a week. I have never missed a day of school. I am still able to workout every day even if I feel like my body is giving up on me. I push through everything which is not always easy. I struggle with the fact that I cannot do everything that I want to do. I have hope that one day I will be able to do the things I want when I want to do them. I have hope that POTS will not stay with me in my journey through life. I hope that I can manage my symptoms better and find out what is causing my symptoms to be worse again. I just have to "keep my head up"....
Thursday, June 28, 2012
This summer is not such a summer...
Overall, I've been doing just eh. There is no other word to describe it. I am extremely exhausted all of the time. I may not have a ton of muscle/joint pain as I have had in the past and my brain fogging is slowly improving, but my exhaustion seems to be increasing dramatically. I am not sure why this is happening, and neither does my doctor!! So that being said, I am going back up to the Mayo Clinic on August 1 for more testing and to see my doctor. He is puzzled with my symptoms. He wants me to get an exercise bike ride test done while I am up at Mayo. I haven't had this test done before. It seems really interesting to me since it includes some pulmonary type of testings too. I hope it gives us more answers as to why I am experiencing my symptoms when I
am trying really hard to manage my symptoms with meds, exercise, fluids, rest...etc. My mom is getting suspicious that there might be an underlying condition to my POTS. She has been researching a ton and
thinks that I could have MS. I am not sure about this, but there's always a possibility I guess.
I do have some stomach issues (more intestinal though) because there are times that I get very constipated and/or nauseous. The nausea comes from a whole assortment of things...from eating too much, eating
too little, being out in the sunshine for more than 10 minutes, standing up too fast, sitting around the house for too long (more than 2 hours at a time), or being in a humid environment.
I have been too exhausted to even walk down the stairs to my cold basement to exercise. I have done some more simple exercises recently such as playing "chase" with my cat for a few minutes or walking up the stairs for a few minutes while holding onto the handrail. It is as though my body is shutting down recently because I cannot do much of anything. This makes the summer not such a summer because I cannot really participate in life. I am constantly exhausted and it is hard to talk, walk, or sit at times. It is very frustrating!!!
I feel very dizzy because of the humidity outside and every muscle in my body feels so fatigued that it seems as if my muscles have turned into cement--they feel so heavy!! I feel so weak and could easily take a nap at any point during the day. I also feel mentally drained also since I am focused on just making it through the day.
Being an intern this summer at a non-profit organization is challenging, even though I only work 3 days a week for a couple of hours. I have shared with my co-workers and my supervisor that I have POTS, but I definitely cover up my symptoms with makeup, a good attitude, and a big smile always! It really helps being able to cover up my symptoms because if I don't think about how tough it is to live with POTS day in and day out, then sometimes I just forget about it and live in the moment. This, of course, doesn't happen all of the time especially when I am so incredibly exhausted!!
I just hope that with the visit to Mayo in August that I will have some news...whether it be good or bad. I just want to know why I am so exhausted this year when last summer I was feeling so amazing and practically "normal". My patience is constantly being tested with having my POTS act up so much, so I will continue to hang in there and live with the weird symptoms until August comes around! :)
am trying really hard to manage my symptoms with meds, exercise, fluids, rest...etc. My mom is getting suspicious that there might be an underlying condition to my POTS. She has been researching a ton and
thinks that I could have MS. I am not sure about this, but there's always a possibility I guess.
I do have some stomach issues (more intestinal though) because there are times that I get very constipated and/or nauseous. The nausea comes from a whole assortment of things...from eating too much, eating
too little, being out in the sunshine for more than 10 minutes, standing up too fast, sitting around the house for too long (more than 2 hours at a time), or being in a humid environment.
I have been too exhausted to even walk down the stairs to my cold basement to exercise. I have done some more simple exercises recently such as playing "chase" with my cat for a few minutes or walking up the stairs for a few minutes while holding onto the handrail. It is as though my body is shutting down recently because I cannot do much of anything. This makes the summer not such a summer because I cannot really participate in life. I am constantly exhausted and it is hard to talk, walk, or sit at times. It is very frustrating!!!
I feel very dizzy because of the humidity outside and every muscle in my body feels so fatigued that it seems as if my muscles have turned into cement--they feel so heavy!! I feel so weak and could easily take a nap at any point during the day. I also feel mentally drained also since I am focused on just making it through the day.
Being an intern this summer at a non-profit organization is challenging, even though I only work 3 days a week for a couple of hours. I have shared with my co-workers and my supervisor that I have POTS, but I definitely cover up my symptoms with makeup, a good attitude, and a big smile always! It really helps being able to cover up my symptoms because if I don't think about how tough it is to live with POTS day in and day out, then sometimes I just forget about it and live in the moment. This, of course, doesn't happen all of the time especially when I am so incredibly exhausted!!
I just hope that with the visit to Mayo in August that I will have some news...whether it be good or bad. I just want to know why I am so exhausted this year when last summer I was feeling so amazing and practically "normal". My patience is constantly being tested with having my POTS act up so much, so I will continue to hang in there and live with the weird symptoms until August comes around! :)
Monday, June 4, 2012
Invisible Disease Awareness Day
Day of Visibility is June 6th! Every June 6th, we pull together as one large family across the globe and spend that day devoted to raising visibility about Invisible Diseases!
"The More We Bring Our Voices Together, The More Likely We Are To Be Heard!"
Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, and Lyme Disease are a few of the popular Invisible Diseases.
Dysautonomia (autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system. This includes Postural Orthostatic Tachycardia Syndrome (POTS), Vasovagal Syncope, Mitral Valve Prolapse Dysautonomia, Pure Autonomic Failure, Neurocardiogenic Syncope (NCS), Neurally Mediated Hypotension (NMH), autonomic instability and a number of lesser-known disorders.
These Invisible Diseases are causing a silent pandemic and we are in a mass medical emergency. The medical community doesn't even recognize Invisible Diseases in patients sometimes because the symptoms of these conditions mimic other diagnoses. This is why it is so difficult for patients with Invisible Diseases because they do not get help from the medical community, which in turn doesn't help the fact that family members and friends do not believe their symptoms to be real. Well they are real. They are life-altering. They limit patients' day-to-day living. Some patients cannot attend school or are even wheelchair-bound or bedridden. Invisible Diseases should not ignored or be invisible anymore!! Visibility is needed for patients to receive proper medical care and support so they can feel better and be cured!!
Raising Visibility is the way that we are going to get the help that we need! Let’s work backwards from our goal... We need a cure. We need extensive research to find the cure. But in order to get research teams together, we need the funding. The only way to get enough funding is to let the people know how and why we need it!
Please check out this site linked below and these YouTube videos for more information!! Also, you may message me on this Events page or privately message me for more information! Please spread the word about Invisible Diseases. Tell one person! If you tell just one person, that is one MORE person that knows about Invisible Diseases!
http://
http://www.youtube.com/
http://www.youtube.com/
"The More We Bring Our Voices Together, The More Likely We Are To Be Heard!"
Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, and Lyme Disease are a few of the popular Invisible Diseases.
Dysautonomia (autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system. This includes Postural Orthostatic Tachycardia Syndrome (POTS), Vasovagal Syncope, Mitral Valve Prolapse Dysautonomia, Pure Autonomic Failure, Neurocardiogenic Syncope (NCS), Neurally Mediated Hypotension (NMH), autonomic instability and a number of lesser-known disorders.
These Invisible Diseases are causing a silent pandemic and we are in a mass medical emergency. The medical community doesn't even recognize Invisible Diseases in patients sometimes because the symptoms of these conditions mimic other diagnoses. This is why it is so difficult for patients with Invisible Diseases because they do not get help from the medical community, which in turn doesn't help the fact that family members and friends do not believe their symptoms to be real. Well they are real. They are life-altering. They limit patients' day-to-day living. Some patients cannot attend school or are even wheelchair-bound or bedridden. Invisible Diseases should not ignored or be invisible anymore!! Visibility is needed for patients to receive proper medical care and support so they can feel better and be cured!!
Raising Visibility is the way that we are going to get the help that we need! Let’s work backwards from our goal... We need a cure. We need extensive research to find the cure. But in order to get research teams together, we need the funding. The only way to get enough funding is to let the people know how and why we need it!
Please check out this site linked below and these YouTube videos for more information!! Also, you may message me on this Events page or privately message me for more information! Please spread the word about Invisible Diseases. Tell one person! If you tell just one person, that is one MORE person that knows about Invisible Diseases!
http://
http://www.youtube.com/
http://www.youtube.com/
Sunday, May 20, 2012
Updates for May
Well it sure has been awhile since I posted something new! It is because of good and bad reasons. The good reason is that I have started my internship at an organization that helps urban youth. It is really fun and exciting to be able to intern this summer. It is, however, extremely tiring! I have not told my organization that I have POTS, nor did I give any hint that there is something wrong with me. I just put on the front that I am perfectly normal like everyone else. So far so good. I have to move around a lot and work for several hours a few days a week, which makes it very difficult for me to do anything else beyond my interning. I come home and I am completely exhausted! But, one the bright side, at least I can intern!
The not-so-great reason why I haven't posted in awhile is the fact that my symptoms are still around. I am always exhausted whether I am interning or not, my joints and muscles are achy, I have a lot of eye pressure in my right eye again, I experience a lot more headaches, and I still get easily overwhelmed. Sometimes I have tremulousness in my hands especially. The fatigue is definitely the worst symptom though because I want to do so much, but I am not able to do things I want to do. I really truly rely on my medications to get me through the day since I am so fatigued. I wish there was an energy drink or a magic pill that I can take to eliminate the fatigue. It would make my life a whole lot easier!
My family and I also went on a vacation to Disney World! We walked around for several hours each day when we were there. I went on a ton of rides too! I would not have been able to survive that trip without the help of Disney's Guest Assistance Card! The card tells the "Cast Members" to allow me and my family to use alternate entrances to rides and attractions so that I did not have to wait in lines. If I did not have the card, then I predict that I would have been miserable --dizzy, lightheaded, nauseous, and even more fatigued! The card was a lifesaver!
On one of the last days of the trip, though, I was so extremely fatigued and did not feel well. I kept pushing through it so that I was not missing anything, but that might have been a bad idea. Because I pushed through my symptoms, I was very very exhausted and my symptoms were then exaggerated because of it. I had a pounding headache, had trouble staying awake, and was very overwhelmed. The bright lights and loud noises associated with the rides and attractions at the parks, along with the chaos of crowds of people, set me into a state of what I call "Sara the Zombie". When I feel this way, I am very quiet, have trouble staying focused, am indifferent to what is going on around me, and I feel drained. It is as if my brain just tells me it wants to shut down for awhile and go on "hibernate mode". My mom and I went back to the hotel room when I felt this way so that I can relax in bed without the chaos of being at the parks. I was able to have my body rest in an environment that was quiet, semi-dark, and cold. This helped a lot. It was very annoying to me that I had to leave the fun of being at the parks so that my body can recuperate! It was not easy for me to leave the rest of my family while they went to go have fun. But, I know that if I were to stay there, then I would not feel very good.
I had an emotional breakdown because it feels as though I am plateauing in my recovery process. It feels as though I am at a standstill with improvement. It just feels like I am living my new "normal". I have felt the same way for such a long period of time now without a great deal of improvement. I still am extremely fatigued and experience all of the symptoms that I have in the past. It is a challenge for me to accept that I am feeling this way and even though I am working so hard to feel better, I am not feeling any better than I have felt in the past. Yes, I do not experience as much pain as I have in the past, but the fatigue is what bothers me the most. The fatigue is just as bad, if not worse, than when I was first diagnosed with POTS. When my family and I went on a vacation to Disney World in 2008, I was not diagnosed with POTS. The doctors thought I still had Myasthenia Gravis. I was able to stand in lines for a while without having to lean on the walls or sit on the handrail because I was dizzy or fatigued. I did not have to take a lot of breaks or continuously go on rides to keep my adrenaline level high so I didn't feel as fatigued.
I just feel that overall I was not as symptomatic in 2008 as I am now. I do not know if I am just remembering incorrectly about what happened in the past or if my POTS is really worse now than it was 4 years ago. I do not know whether the new medications are working, but I do know that I am not happy with being so fatigued all of the time! I want to get better, and I will continue to work hard to get better! I am not giving up, nor am I depressed about not having more positive results. I am just frustrated and more driven towards receiving better treatment and better results!
The not-so-great reason why I haven't posted in awhile is the fact that my symptoms are still around. I am always exhausted whether I am interning or not, my joints and muscles are achy, I have a lot of eye pressure in my right eye again, I experience a lot more headaches, and I still get easily overwhelmed. Sometimes I have tremulousness in my hands especially. The fatigue is definitely the worst symptom though because I want to do so much, but I am not able to do things I want to do. I really truly rely on my medications to get me through the day since I am so fatigued. I wish there was an energy drink or a magic pill that I can take to eliminate the fatigue. It would make my life a whole lot easier!
My family and I also went on a vacation to Disney World! We walked around for several hours each day when we were there. I went on a ton of rides too! I would not have been able to survive that trip without the help of Disney's Guest Assistance Card! The card tells the "Cast Members" to allow me and my family to use alternate entrances to rides and attractions so that I did not have to wait in lines. If I did not have the card, then I predict that I would have been miserable --dizzy, lightheaded, nauseous, and even more fatigued! The card was a lifesaver!
On one of the last days of the trip, though, I was so extremely fatigued and did not feel well. I kept pushing through it so that I was not missing anything, but that might have been a bad idea. Because I pushed through my symptoms, I was very very exhausted and my symptoms were then exaggerated because of it. I had a pounding headache, had trouble staying awake, and was very overwhelmed. The bright lights and loud noises associated with the rides and attractions at the parks, along with the chaos of crowds of people, set me into a state of what I call "Sara the Zombie". When I feel this way, I am very quiet, have trouble staying focused, am indifferent to what is going on around me, and I feel drained. It is as if my brain just tells me it wants to shut down for awhile and go on "hibernate mode". My mom and I went back to the hotel room when I felt this way so that I can relax in bed without the chaos of being at the parks. I was able to have my body rest in an environment that was quiet, semi-dark, and cold. This helped a lot. It was very annoying to me that I had to leave the fun of being at the parks so that my body can recuperate! It was not easy for me to leave the rest of my family while they went to go have fun. But, I know that if I were to stay there, then I would not feel very good.
I had an emotional breakdown because it feels as though I am plateauing in my recovery process. It feels as though I am at a standstill with improvement. It just feels like I am living my new "normal". I have felt the same way for such a long period of time now without a great deal of improvement. I still am extremely fatigued and experience all of the symptoms that I have in the past. It is a challenge for me to accept that I am feeling this way and even though I am working so hard to feel better, I am not feeling any better than I have felt in the past. Yes, I do not experience as much pain as I have in the past, but the fatigue is what bothers me the most. The fatigue is just as bad, if not worse, than when I was first diagnosed with POTS. When my family and I went on a vacation to Disney World in 2008, I was not diagnosed with POTS. The doctors thought I still had Myasthenia Gravis. I was able to stand in lines for a while without having to lean on the walls or sit on the handrail because I was dizzy or fatigued. I did not have to take a lot of breaks or continuously go on rides to keep my adrenaline level high so I didn't feel as fatigued.
I just feel that overall I was not as symptomatic in 2008 as I am now. I do not know if I am just remembering incorrectly about what happened in the past or if my POTS is really worse now than it was 4 years ago. I do not know whether the new medications are working, but I do know that I am not happy with being so fatigued all of the time! I want to get better, and I will continue to work hard to get better! I am not giving up, nor am I depressed about not having more positive results. I am just frustrated and more driven towards receiving better treatment and better results!
Sunday, April 8, 2012
Zzzzzzz...
I'm sleepy. I don't know if I am more sleepy now or if I am slowly getting better. Maybe I'm just exhausted or am doing too much exercising. Maybe the new medicine is working...or maybe not. I am not sure what is going on with me, but I know I'm not me. I am so tired all the time still and experience a lot of brain fogging too. There are times that I feel like I cannot concentrate and times when I feel as though something else is controlling my body. I just don't feel like me anymore. It feels like I barely know how "normal" is supposed to feel anymore because this has been my "normal" for so so long!!
I'm really considering going to New York to see a new doctor there. I just feel like maybe I need a second opinion or just a new set of eyes and ideas.
I also have more bruises on my legs. Now I have 4 small bruises. A few weeks ago I had a large bruise on my inner left calf, but now the little bruises are in various places on my legs. I don't know why this is happening, but I am getting slightly worried about it. Getting bruises is normal when you hit your leg on something, but it definitely is not normal when I know for a fact that I did not hit my legs on anything. So I will keep an eye on it.
As for school, it is going okay but getting schoolwork completed is so difficult for me because I am so fatigued and brain fogged all of the time. I am still achieving very high marks, but I wish I could be able to focus more on the tasks that I need to accomplish without being brain fogged. Soon enough I will have this all figured out and I will be feeling better. Feeling better and still achieving high marks in school are my ultimate goals. I know I will somehow achieve both of those goals :)
I'm really considering going to New York to see a new doctor there. I just feel like maybe I need a second opinion or just a new set of eyes and ideas.
I also have more bruises on my legs. Now I have 4 small bruises. A few weeks ago I had a large bruise on my inner left calf, but now the little bruises are in various places on my legs. I don't know why this is happening, but I am getting slightly worried about it. Getting bruises is normal when you hit your leg on something, but it definitely is not normal when I know for a fact that I did not hit my legs on anything. So I will keep an eye on it.
As for school, it is going okay but getting schoolwork completed is so difficult for me because I am so fatigued and brain fogged all of the time. I am still achieving very high marks, but I wish I could be able to focus more on the tasks that I need to accomplish without being brain fogged. Soon enough I will have this all figured out and I will be feeling better. Feeling better and still achieving high marks in school are my ultimate goals. I know I will somehow achieve both of those goals :)
Tuesday, March 27, 2012
Good I guess...? But weird!
Well it has been almost a week since I have last updated. The stomach pains are almost all the way gone. Still occasionally have troubles, but overall it is better. And, the brain fogging is replaced with a "drunk" feeling. I feel as though my mind and body are being controlled by something other than me. I wrote 2 essays that were 7 pages each in less than 3 hours! I usually write one essay in at least 3 or 4 hours! And, I couldn't remember what I actually wrote. It was as if something in my brain was telling me to type stuff down, but I had no recollection of it all. It's as if I was in such a deep zone or something. It is scary!
Also, on Sunday very early morning (roughly 12:30ish), I woke up and realized I had fallen asleep while watching t.v. I had not brushed my teeth, so I decided that I might as well brush them before I go back to sleep. Well, I wasn't expected what had happened next... I had lost my coordination. I could barely walk a straight line while walking down the hallway to the bathroom. I had to hold onto the wall at one point because my legs felt like jelly and the floor felt like it was moving. I had no idea what I was saying when I was talking to two friends of mine when I saw them in the bathroom area, and I had no idea how loud I was talking either. It was a scary feeling because I have never experienced this. This was the first day of increasing the Celexa dosage too. I was afraid to take it the next day! But, I took it and went to bed shortly afterwards. Thankfully I was ready for bed when I took it, and I was in bed before any side effects occurred. Hopefully I don't experience that "loopy" feeling again!!!
I'm still crossing my fingers with the Celexa working well though! I hope to be feeling better soon!
Also, on Sunday very early morning (roughly 12:30ish), I woke up and realized I had fallen asleep while watching t.v. I had not brushed my teeth, so I decided that I might as well brush them before I go back to sleep. Well, I wasn't expected what had happened next... I had lost my coordination. I could barely walk a straight line while walking down the hallway to the bathroom. I had to hold onto the wall at one point because my legs felt like jelly and the floor felt like it was moving. I had no idea what I was saying when I was talking to two friends of mine when I saw them in the bathroom area, and I had no idea how loud I was talking either. It was a scary feeling because I have never experienced this. This was the first day of increasing the Celexa dosage too. I was afraid to take it the next day! But, I took it and went to bed shortly afterwards. Thankfully I was ready for bed when I took it, and I was in bed before any side effects occurred. Hopefully I don't experience that "loopy" feeling again!!!
I'm still crossing my fingers with the Celexa working well though! I hope to be feeling better soon!
Wednesday, March 21, 2012
My Tummy Isn't Happy...and Neither am I!
Well my doctor has me on an SSRI (selective-serotonin reuptake inhibitor/ AKA an anti-depressant) called Celexa to help with the POTS symptoms such as headaches, fatigue, and brain fogging. I am a very realistic person, so I understand that this is yet another medication that has helped others in the past and maybe it will or will not help me, but I am also extremely hopeful. So I really truly hope this medication along with the ones that I'm still on (Midodrine, Relafen, Provigil, and Lyrica) work better for me!! I also was on a new medication for my acne (even though it isn't terrible, we were thinking that it might help to be on an antibiotic since I sweat sooooooo much every day). But, either the Celexa or the antibiotic is making me very nauseous. Sometimes I wake up in the middle of the night feeling as though I might throw up or something. It is frustrating. I stopped taking the antibiotic to see if that would help with the nausea, but I still have that feeling. It happens randomly so it is strange to me. I never have felt like this for an extended amount of time, so I know it had to be one of the new meds making me nauseous.
I'm happy that my doctor is starting me on a new medication but I am not happy with the side effect since I'm pretty sure the nauseous feeling is from the Celexa. Darn!!! It's almost as though I am constipated but not. It's hard to describe. The doctor said that I might not feel better for about a month after starting the Celexa, so for now I'm just waiting... It stinks because I am still incredibly brain fogged, dizzy, super fatigued, have racing heart feelings sometimes, and am sometimes have tremulousness episodes. It is annoying when I cannot get my schoolwork done. I'm hoping that I feel better because I have 5 projects due next week!!! AHH!! haha
I'm happy that my doctor is starting me on a new medication but I am not happy with the side effect since I'm pretty sure the nauseous feeling is from the Celexa. Darn!!! It's almost as though I am constipated but not. It's hard to describe. The doctor said that I might not feel better for about a month after starting the Celexa, so for now I'm just waiting... It stinks because I am still incredibly brain fogged, dizzy, super fatigued, have racing heart feelings sometimes, and am sometimes have tremulousness episodes. It is annoying when I cannot get my schoolwork done. I'm hoping that I feel better because I have 5 projects due next week!!! AHH!! haha
Thursday, March 8, 2012
Beyond Frustrated Now
Okay doctors and researchers out there: come up with a solution! I'm getting awfully tired of this! I don't like being the guinea pig. I don't like living each day with the worry that I won't be able to get my homework done, or maybe I won't make it to the bathroom in time, or maybe I will be viewed as the "sick girl". I want to participate in life. Yes, I do have a better life than some other POTS patients do. But that is not my point. My point is that I'm tired being tired. I'm tired feeling joint and muscle pain. I'm tired of not knowing what my body will do throughout the day. I'm tired of not knowing how to make anything better. I'm tired of constantly trying and trying and trying and trying to make things easier for myself. I'm tired of giving up so many important things in my life just so that I can get through my day. I'm tired of trying new medications and trying to add more Gatorade or more water or more salt or more exercise to my already tiring routine. I'm exhausted.
Please come up with a solution. Some kind of help would be nice. I don't like how the doctors and researchers have no clue as to what to do with POTS patients. I don't like how we are left to twiddle our thumbs and hope for the best while we wait for some kind of results from our tremendous strength and hard work. Well, I'm exhausted. I need help. I need for there to be some kind of answer. Something!!!
I know I'm strong. I know I'm not depressed. I know I will eventually get through this. Waiting and wishing for years and years for things to get better has not worked. I'm still not feeling good. I'm still not able to do the things I want to do. I need the doctors to figure something out. It is getting on my nerves that some of the best doctors in the world can't seem to help me. It is beyond frustrating. I'm beyond being upset. I feel helpless sometimes because I have to sit around and wait until I feel better in order to do something I want to do (usually I have to wait around to feel better so I can start my homework).
How is anyone supposed to be able to get anything done when they feel as though they haven't slept in 5 days, have run 10 marathons, and have taken 50 tests all in one day?? That's what it feels like. That's how mentally and physically exhausting I feel. I'm so fatigued and brain fogged each and every second of my day without any relief in sight. How can anyone function like that? I have no idea how I am able to do what limited things I can do. No idea at all!! I don't know how I can sit in class or get a 4.0 at college. I don't know how I can walk on some days. I have no idea how I am able to do that!
Again, I know I'm strong. But really, how am I supposed to live like this every day of my life? How am I not depressed?? I have no idea!! Must be the strength and good attitude. I have no more patience though. I need some relief. Something better change or else I might become Miss Cranky Pants! haha
Please come up with a solution. Some kind of help would be nice. I don't like how the doctors and researchers have no clue as to what to do with POTS patients. I don't like how we are left to twiddle our thumbs and hope for the best while we wait for some kind of results from our tremendous strength and hard work. Well, I'm exhausted. I need help. I need for there to be some kind of answer. Something!!!
I know I'm strong. I know I'm not depressed. I know I will eventually get through this. Waiting and wishing for years and years for things to get better has not worked. I'm still not feeling good. I'm still not able to do the things I want to do. I need the doctors to figure something out. It is getting on my nerves that some of the best doctors in the world can't seem to help me. It is beyond frustrating. I'm beyond being upset. I feel helpless sometimes because I have to sit around and wait until I feel better in order to do something I want to do (usually I have to wait around to feel better so I can start my homework).
How is anyone supposed to be able to get anything done when they feel as though they haven't slept in 5 days, have run 10 marathons, and have taken 50 tests all in one day?? That's what it feels like. That's how mentally and physically exhausting I feel. I'm so fatigued and brain fogged each and every second of my day without any relief in sight. How can anyone function like that? I have no idea how I am able to do what limited things I can do. No idea at all!! I don't know how I can sit in class or get a 4.0 at college. I don't know how I can walk on some days. I have no idea how I am able to do that!
Again, I know I'm strong. But really, how am I supposed to live like this every day of my life? How am I not depressed?? I have no idea!! Must be the strength and good attitude. I have no more patience though. I need some relief. Something better change or else I might become Miss Cranky Pants! haha
Sunday, March 4, 2012
Everyone has one...
Why do we all have to have some kind of "disability"? Why can't we be relatively equal across the board? But then why are there some people who seem to have it all and don't have to worry about being held back by some problem?
Today is not a good day. I am exhausted. I cannot concentrate. I have a massive headache. I am very sensitive to every sound and light source. My joints hurt, especially my hands. My eyesight is really blurry today. I just can't accomplish much of anything. I am trying to complete a midterm that is essay-based. I have to write responses to several questions by using the information learned in class and with outside resources...which means I have to research stuff. It is so challenging when I know how smart and gifted in academics I am, but I cannot finish a simple assignment such as my midterm. I cannot sit at the computer and just type out the responses I know that I know. I cannot just sit down and research for the answers I don't know. I am struggling to just sit in my desk chair and look at the computer...let alone actually come up with the right words to explain my answers. It is extremely frustrating. I am just not having a good day.
I also woke up today with a huge dark bruise on my left leg. I think it is from my knee-high socks I was wearing yesterday. Lately I have been very bloated because of all of the salt and liquids that I have to consume. I think that by being bloated, that must have caused my legs to swell and then the socks were really tight against my leg. Who knows... It is scary waking up to something that just pops up out of nowhere and there is no explanation for it at all. It is even more frustrating when I know there's always a potential bad reason why something like that could have happened.
But, as for now, I will be done with my ranting and try to stay as positive as possible. It is just so difficult when everything used to be so easy for me back when I didn't have to deal with POTS. I just hope that my doctor can help me soon. I want to get better so badly before I have an internship to worry about and then a practicum class and then a job!! I want to get better. I need to get better!
Today is not a good day. I am exhausted. I cannot concentrate. I have a massive headache. I am very sensitive to every sound and light source. My joints hurt, especially my hands. My eyesight is really blurry today. I just can't accomplish much of anything. I am trying to complete a midterm that is essay-based. I have to write responses to several questions by using the information learned in class and with outside resources...which means I have to research stuff. It is so challenging when I know how smart and gifted in academics I am, but I cannot finish a simple assignment such as my midterm. I cannot sit at the computer and just type out the responses I know that I know. I cannot just sit down and research for the answers I don't know. I am struggling to just sit in my desk chair and look at the computer...let alone actually come up with the right words to explain my answers. It is extremely frustrating. I am just not having a good day.
I also woke up today with a huge dark bruise on my left leg. I think it is from my knee-high socks I was wearing yesterday. Lately I have been very bloated because of all of the salt and liquids that I have to consume. I think that by being bloated, that must have caused my legs to swell and then the socks were really tight against my leg. Who knows... It is scary waking up to something that just pops up out of nowhere and there is no explanation for it at all. It is even more frustrating when I know there's always a potential bad reason why something like that could have happened.
But, as for now, I will be done with my ranting and try to stay as positive as possible. It is just so difficult when everything used to be so easy for me back when I didn't have to deal with POTS. I just hope that my doctor can help me soon. I want to get better so badly before I have an internship to worry about and then a practicum class and then a job!! I want to get better. I need to get better!
Tuesday, February 28, 2012
Oh boy...here we go again
The lyrics to OK GO!'s "Here it Goes Again" definitely have a meaning to me today:
"Just when you think that you're in control, just when you think that you've got a hold, just when you get on a roll, here it goes, here it goes, here it goes again. Oh, here it goes again. I should have known, should have known, should have known again, but here it goes again. Oh, here it goes again."
"Just when you think that you're in control, just when you think that you've got a hold, just when you get on a roll, here it goes, here it goes, here it goes again. Oh, here it goes again. I should have known, should have known, should have known again, but here it goes again. Oh, here it goes again."
The POTS symptoms keep coming back. Today, of course I am tired. I always am. But today I have a "pressure headache". Not quite a migraine, but not quite a normal kind of headache. The headache is mainly focused on the front right section of my head. At least it's not my entire head that aches!! My vision is a bit altered because of it too. That worries me sometimes, but it's still rather normal-ish. I can't see really far, but that's okay because I have glasses. If I could actually wear the glasses, that would be nice! Wearing the glasses puts additional pressure on my head, so it's not always a good idea to have glasses on or a headband. Thankfully I was able to blow-dry my hair today so that I don't necessarily need a headband.
I thought the day started off smoothly. I was able to shower, get dressed, and even blow-dry my hair. I look pretty good today. But, I don't feel as great as I look. I have more tremulousness again, especially in my hands. It appears as if I am nervous or anxious or something like that. The problem is that I am not nervous or anxious so having shaky hands is quite distracting. I also have a difficult time verbally expressing myself today. I can come up with words on paper or through online communication, but speaking is difficult today. So, talking, headaches, tremulousness, and fatigue....great. I was really looking forward to a decent day today. I think it should get better, at least that is what I am hoping for! :)
It is all just really frustrating when I try and try and try and try to get better and I am doing everything that I am supposed to be doing. I just have not felt any of the results from my hard work. I have never expected the hard work to give a very fast response, but I was hoping for at least some kind of result. It's almost as if I worked on a term paper for weeks and weeks and I turn it in early, and then I didn't receive the grade for the paper for several months later. That's what it feels like. It will get better though. Soon enough I will see results :)
Thursday, February 23, 2012
Updates for February
Well I talked with my doctor to see what new things I can do to help with my brain fogging and excessive fatigue. The Nadolol and Midodrine that I started taking again a few weeks ago have not been helping. So, my doctor says that I should try to skip the Nadolol for a day just to see how I feel without it (I did that today). If there is no change, then I will skip the Provigil for a day to see how I am without that medication (I will try to do this tomorrow). We are just trying to find an improved medication balance that will help me get through daily living.
My doctor does not have great explanations as to why things are worse for me now, but he does know that this can happen. He says that I should still recover too. I have been very very very fatigued and extremely brain fogged. I have more headaches now and more dizzy episodes too. I do not know if the changes in my symptoms are related to the changes in weather. I truly just do not feel any different now than when I saw my doctor in early January. I am very frustrated because I am trying my very best to feel better. I am doing everything right. I am still exercising intensely for at least 30 minutes every single day and drinking a ton of water and eating a ton of salt with everything (to the point where I get really bloated by the end of the day now because of all the water and salt). I am also taking 40 mg of Nadolol in the morning, 200 mg of Provigil twice a day, 150 mg of Lyrica twice a day, 10 mg of Midodrine three times a day, and 5 grams of ferrous sulfate (iron) at night. I know that the results do take awhile to really take into effect, but I am struggling to keep up with my schoolwork because of the symptoms.
I am still barely making it through my everyday routine. I am experiencing brain fogging and fatigue that limits me in succeeding in my schoolwork. I dropped out of my child practicum class because I know that if I cannot manage daily life yet, I should gain some strength before I have to take care of preschool children in a classroom setting. I also quit 2 of the organizations I am involved with so that I could lighten my workload. I took a leave of absence from my other 3 organizations so I can solely focus on schoolwork. Anything to help me feel better is the ultimate goal of mine, even if that means giving up some of the things that I am passionate about.
I am still positive and hopeful that I will get better, that my symptoms will get better, and that life will get a little bit easier. My hard work has to pay off eventually!!! :)
My doctor does not have great explanations as to why things are worse for me now, but he does know that this can happen. He says that I should still recover too. I have been very very very fatigued and extremely brain fogged. I have more headaches now and more dizzy episodes too. I do not know if the changes in my symptoms are related to the changes in weather. I truly just do not feel any different now than when I saw my doctor in early January. I am very frustrated because I am trying my very best to feel better. I am doing everything right. I am still exercising intensely for at least 30 minutes every single day and drinking a ton of water and eating a ton of salt with everything (to the point where I get really bloated by the end of the day now because of all the water and salt). I am also taking 40 mg of Nadolol in the morning, 200 mg of Provigil twice a day, 150 mg of Lyrica twice a day, 10 mg of Midodrine three times a day, and 5 grams of ferrous sulfate (iron) at night. I know that the results do take awhile to really take into effect, but I am struggling to keep up with my schoolwork because of the symptoms.
I am still barely making it through my everyday routine. I am experiencing brain fogging and fatigue that limits me in succeeding in my schoolwork. I dropped out of my child practicum class because I know that if I cannot manage daily life yet, I should gain some strength before I have to take care of preschool children in a classroom setting. I also quit 2 of the organizations I am involved with so that I could lighten my workload. I took a leave of absence from my other 3 organizations so I can solely focus on schoolwork. Anything to help me feel better is the ultimate goal of mine, even if that means giving up some of the things that I am passionate about.
I am still positive and hopeful that I will get better, that my symptoms will get better, and that life will get a little bit easier. My hard work has to pay off eventually!!! :)
Saturday, February 18, 2012
More Info to Share
Sorry I am a very choppy speaker...it's mainly due to the brain fogging. And sorry it ends so abruptly!
Wednesday, February 15, 2012
Friday, February 10, 2012
I Felt Like Researching Today...
I found that there is a possible link to a mutation in the MTHFR gene. Watch this video: http://www.youtube.com/watch?v=8pdi0k9x4sA&feature=mfu_in_order&list=UL
I'm not sure if this is going to really be a cure or anything, but at least this could be a bit of new information for doctors. Any information is some information, so that's all that matters.
I forgot about this amazing 3-part video series that is from the Dysautonomia Information Network. Please share these videos with others! It is very easy to understand what POTS really is!
Part 1: http://www.youtube.com/watch?v=Fx688XLvA8k
Part 2: http://www.youtube.com/watch?v=bTM8RNzV6k4&feature=related
Part 3: http://www.youtube.com/watch?v=4rtcw23CFqo&feature=related
I'm not sure if this is going to really be a cure or anything, but at least this could be a bit of new information for doctors. Any information is some information, so that's all that matters.
I forgot about this amazing 3-part video series that is from the Dysautonomia Information Network. Please share these videos with others! It is very easy to understand what POTS really is!
Part 1: http://www.youtube.com/watch?v=Fx688XLvA8k
Part 2: http://www.youtube.com/watch?v=bTM8RNzV6k4&feature=related
Part 3: http://www.youtube.com/watch?v=4rtcw23CFqo&feature=related
Thursday, February 9, 2012
Waiting Game Still Continues...
Well I did hear back from my doctor and nurses. I will be on 40 mg Nadolol in the mornings along with the 10 mg Midodrine (3 times a day) so that my body can kick itself into gear...hopefully!! I have to continue what I am doing now with the water, salt, Gatorade, and exercise. So, overall it is okay, but I still don't like waiting for results. I am doing everything that I am supposed to be doing. I listen and ask questions. It's just that the doctors don't know how else to help me besides putting me on more medications. That's frustrating. And, of course, when they put me on new medications, I have to wait at least a week or so to reevaluate whether the medication is helping or not. Have I mentioned that I don't like waiting......????!!
Being patient is tough when I'm doing everything right. I just want to see some kind of results from all of my hard work towards feeling better. It's frustrating when I have to give up a few things in order to be functioning at a semi-normal level. Of course I am very exhausted and brain fogged every hour, every day. My schoolwork is being affected by the brain fogging especially because I have a very small window of opportunity to work on my homework or study for tests. I cannot comprehend information as well as I used to, I get very forgetful so I must keep 4 calendars and 1 daily planner to keep me organized so I won't forget anything, and I cannot participate in class or even life as much because I cannot vocalize what I am thinking or I am in such a phase that I don't know what's going on around me sometimes.
Being a smart cookie, I know a lot of information. Learning is my passion. I cannot succeed in learning when I am so brain fogged all of the time. School is my life. I love it! But, I do not enjoy it when I am struggling so much to simply comprehend what my professors are saying in classes. I have stress when I cannot complete homework assignments or projects at the level that I used to. Yes, I am a perfectionist. Yes, I have limitations. But why does that mean I cannot perform well in school as much as I have in the past?? I don't understand why there is such a change with my brain fogging and fatigue. I don't understand how I was doing so well last year and now I am not so well. I thought that the uphill climb was over. I guess this is just another mountain I have to climb before I reach the peak--until I get better.
Man it is tough though! It is tough when doctors tell you that you are doing everything right and they are conflicted as to what they should do or say to me. It feels as though I am the puzzle, and since I have a difficult solution, the doctors put me off for awhile and walk away, or they just have misplaced the box with the picture on it showing them what the solution is. I am frustrated. I am struggling. But I still am pushing through. I am trying to prove that a person with POTS will never give up no matter what crap they are dealt. I am trying to show doctors that I am a fighter, and I will win this battle some way, somehow. I just have to wait to feel the results of all of my hard work...
Being patient is tough when I'm doing everything right. I just want to see some kind of results from all of my hard work towards feeling better. It's frustrating when I have to give up a few things in order to be functioning at a semi-normal level. Of course I am very exhausted and brain fogged every hour, every day. My schoolwork is being affected by the brain fogging especially because I have a very small window of opportunity to work on my homework or study for tests. I cannot comprehend information as well as I used to, I get very forgetful so I must keep 4 calendars and 1 daily planner to keep me organized so I won't forget anything, and I cannot participate in class or even life as much because I cannot vocalize what I am thinking or I am in such a phase that I don't know what's going on around me sometimes.
Being a smart cookie, I know a lot of information. Learning is my passion. I cannot succeed in learning when I am so brain fogged all of the time. School is my life. I love it! But, I do not enjoy it when I am struggling so much to simply comprehend what my professors are saying in classes. I have stress when I cannot complete homework assignments or projects at the level that I used to. Yes, I am a perfectionist. Yes, I have limitations. But why does that mean I cannot perform well in school as much as I have in the past?? I don't understand why there is such a change with my brain fogging and fatigue. I don't understand how I was doing so well last year and now I am not so well. I thought that the uphill climb was over. I guess this is just another mountain I have to climb before I reach the peak--until I get better.
Man it is tough though! It is tough when doctors tell you that you are doing everything right and they are conflicted as to what they should do or say to me. It feels as though I am the puzzle, and since I have a difficult solution, the doctors put me off for awhile and walk away, or they just have misplaced the box with the picture on it showing them what the solution is. I am frustrated. I am struggling. But I still am pushing through. I am trying to prove that a person with POTS will never give up no matter what crap they are dealt. I am trying to show doctors that I am a fighter, and I will win this battle some way, somehow. I just have to wait to feel the results of all of my hard work...
Tuesday, January 31, 2012
The Waiting Game
The waiting game stinks!!!! I really don't want to wait forever to hear back from my doctor. I want answers. I want some relief. It feels like they constantly are forgetting me because I am not there in the office talking to them face-to-face. I am attempting to talk to the middleman in order to talk to my doctor. Why can't this process be easier? Or at least faster?
I feel sorry for the people trying to contact their doctors when they are in emergency situations. I know I'm not an emergency to my doctors, but I can barely function. I can barely make it through my day. I am too exhausted and brain fogged to do much at all. My schoolwork is being affected by it already. Yes, I still have decent grades, but I'm afraid that if I am too brain fogged or fatigued, my test scores will drop or I won't be able to do the best I can possibly do. I stepped down from one of my clubs so that my responsibilities will be filled by someone else. I have retreated, and I don't like it! I do know, however, that this is for the best.
Somehow, some way, I will feel better. Whether or not my doctor can give me a clue into how I can be feeling better is the question now. I know that my determination and strength will help me to feel better eventually. It just would be so much easier if I had some help from effective medications or something! Patience is key now. I will try to be a patient patient! :)
I feel sorry for the people trying to contact their doctors when they are in emergency situations. I know I'm not an emergency to my doctors, but I can barely function. I can barely make it through my day. I am too exhausted and brain fogged to do much at all. My schoolwork is being affected by it already. Yes, I still have decent grades, but I'm afraid that if I am too brain fogged or fatigued, my test scores will drop or I won't be able to do the best I can possibly do. I stepped down from one of my clubs so that my responsibilities will be filled by someone else. I have retreated, and I don't like it! I do know, however, that this is for the best.
Somehow, some way, I will feel better. Whether or not my doctor can give me a clue into how I can be feeling better is the question now. I know that my determination and strength will help me to feel better eventually. It just would be so much easier if I had some help from effective medications or something! Patience is key now. I will try to be a patient patient! :)
Monday, January 30, 2012
Theme Song of this Month
Even though the song is technically about a relationship ending, I feel that the lyrics are what really count. What doesn't kill us really does makes us stronger....so I have had this perspective since day 1---since 2008.
"You think you got the best of me. Think you had the last laugh. Bet you think that everything good is gone...What doesn't kill you makes you stronger. Stand a little taller...What doesn't kill you makes a fighter."
This song is true with me. My relationship with POTS has made me into a fighter. It has made me stronger. I have the strength to overcome this chaos and pain. Everything is still good; the good is not gone. I can still do some things that I want to do. I have to be thankful for that. I do stand taller because I know that POTS has not won. I know it won't.
Hoping to keep this perspective even through all the chaos of having POTS. :)
Thursday, January 26, 2012
Frustration...
Well, in my last post I said how I would probably go on the 5 mg of Midodrine. Well, today I couldn't take the symptoms anymore. I had to start the 5 mg because I couldn't function. It's not even the pain that is truly bothering me anymore. That I can deal with. It's the brain fogging and fatigue that drive me absolutely crazy! I can barely get out of bed. I could not pay attention in class or at work. I feel like I'm in a daze or that my brain is falling apart. The things I used to be so amazing in, like comprehension of class material, speaking, creating art, and being efficient and productive have all been thrown out the window. I feel as though I cannot do these things well at all. I constantly misplace items, forget what I have learned in classes, have trouble forming my words and conveying my thoughts to others, and staying on-task. Considering I have POTS and cannot do other things that "normal" people can do (go to social outings, play sports, and travel), I have always relied on my inner strengths and knowledge to be successful. Now that those things have also been damaged, it is difficult to accept these changes.
No matter what I do, it doesn't seem to matter. I do EVERYTHING that my doctor tells me to do. It is so frustrating to just handle the symptoms when I am trying so hard to get better. My body is going to do what it's going to do, but I just want it to cooperate with me! It is so hard to convey the frustration to others because they just see me as the girl who is an overachiever who just looks tired, even though they know I have POTS. It almost feels like my whole body is damaged, like some specific part is missing, and I need to find that part to fix everything. But, that is not the case. I have POTS. It is frustrating. All I can do is continue doing what my doctor tells me to do and keep hopeful thoughts that everything will get better soon. All of my hard work will pay off eventually. Sure it is definitely not fun in the present, but I'm pretty sure the future holds happy and fun times ahead! All I can do is wait.
No matter what I do, it doesn't seem to matter. I do EVERYTHING that my doctor tells me to do. It is so frustrating to just handle the symptoms when I am trying so hard to get better. My body is going to do what it's going to do, but I just want it to cooperate with me! It is so hard to convey the frustration to others because they just see me as the girl who is an overachiever who just looks tired, even though they know I have POTS. It almost feels like my whole body is damaged, like some specific part is missing, and I need to find that part to fix everything. But, that is not the case. I have POTS. It is frustrating. All I can do is continue doing what my doctor tells me to do and keep hopeful thoughts that everything will get better soon. All of my hard work will pay off eventually. Sure it is definitely not fun in the present, but I'm pretty sure the future holds happy and fun times ahead! All I can do is wait.
Wednesday, January 25, 2012
Mother Nature sure is confusing me!
Well the weather has been crazy this winter!! Today I walked to class and had sleet hit my face. On the way back to my dorm, it was pouring rain. Now it is super dark and cold. Such a strange season! It definitely does not help with my symptoms though. Having the weather bounce up and down in temperature and in precipitation makes it difficult for me to differentiate muscle or joint pains due to working out more now and the tightness in my muscles and joints due to the weather changes.
It is frustrating because I need to figure out if I am feeling better on the 2.5 mg of Midodrine that I started last Friday. My doctor says to try that out for a week, then if I don't feel better, I will go on 5 mg. So, no more Nadolol, which is good because it made me pretty tired (even more so than usual). But, due to the weather fluctuations and my symptoms fluctuating, I cannot tell if I feel any different with the 2.5 mg of Midodrine 3 times a day. So, I hope that with the increase that I will start on Friday, I will get to feeling even better!! :)
It is frustrating because I need to figure out if I am feeling better on the 2.5 mg of Midodrine that I started last Friday. My doctor says to try that out for a week, then if I don't feel better, I will go on 5 mg. So, no more Nadolol, which is good because it made me pretty tired (even more so than usual). But, due to the weather fluctuations and my symptoms fluctuating, I cannot tell if I feel any different with the 2.5 mg of Midodrine 3 times a day. So, I hope that with the increase that I will start on Friday, I will get to feeling even better!! :)
Monday, January 16, 2012
Yeah I'm still there...
Even with a medical condition like POTS, I'm still here. I'm still me. I can do whatever I want to. I can achieve anything I want to. Sure there are plenty of limitations with what I can do, but I can still do things I want to. If I push through the pain, force my fatigued body to get up, then I can go to college, get straight A's, be involved in multiple organizations, and take part in hobbies. It takes a heck of a lot to push through the pain and fatigue and brain fogginess, but I can do it. It is possible.
Just as Eleanor Roosevelt said, "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
POTS may be tough to live with, but I know that no matter what, I can achieve anything I want to.
Being up at the Mayo Clinic was frustrating, but at least I have an answer as to why my symptoms were getting out of control last semester...I am officially NOT in recovery anymore. My POTS has relapsed. There is no way to truly explain why it happened, but it did. Now I am back on the Nadolol, and possibly the Midodrine again within the next few weeks. I still am very very fatigued and brain fogged. The generalized pain is alright, definitely tolerable, but not unnoticeable. I tend to have more headaches that are annoying at times and get pretty dizzy because of the Nadolol's effect of slowing down my heart rate. But, it should get better. I should be feeling better soon! I am just very thankful that I have a wonderful support system and understanding professors! That makes everything so much easier! :)
Just as Eleanor Roosevelt said, "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
POTS may be tough to live with, but I know that no matter what, I can achieve anything I want to.
Being up at the Mayo Clinic was frustrating, but at least I have an answer as to why my symptoms were getting out of control last semester...I am officially NOT in recovery anymore. My POTS has relapsed. There is no way to truly explain why it happened, but it did. Now I am back on the Nadolol, and possibly the Midodrine again within the next few weeks. I still am very very fatigued and brain fogged. The generalized pain is alright, definitely tolerable, but not unnoticeable. I tend to have more headaches that are annoying at times and get pretty dizzy because of the Nadolol's effect of slowing down my heart rate. But, it should get better. I should be feeling better soon! I am just very thankful that I have a wonderful support system and understanding professors! That makes everything so much easier! :)
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