For some reason all day today the topic of FUN has been on my mind. I thought I need to blog about this. All I ever talk about is updates on doctor appointments, how I'm feeling etc. I think it's important that everyone knows I'm still a real person with real needs, real wants, real feelings, just like every other person. And, I still have fun.
Keep in mind MG affects all voluntary muscles including facial muscles... I love to smile and laugh but doing so for a long time wears out my diaphragm and my face. Even without smiling or laughing... I remember at a party not too long ago I was struggling with keeping my face from going into full frown mode. It just falls limp... limp face doesn't mean unhappy or anything other than MG. Remember that. Usually, unless you've said or done something really mean/hurtful, I'm pretty content regardless of what my face shows.
Fortunately, for me, having fun has never been a problem. I have always been able to come up with things to do to keep me from being bored. Very glad that was an ability I was given since its been very useful now.
Fun used to be focused on going on vacations, dates/nights out, entertaining/having people over etc. Well, fun now, it's a lot more than that. Fun is sitting with a friend chatting about anything and everything and nothing at all. Fun is watching the show Impractical Jokers (if you haven't seen it and you don't get offended easily- watch it- hilarious!) Fun is feeling well enough to put on makeup and a dress even if I'm just going to a store. Fun is being in 3rd place as the only female in an all male football pool. Fun is that one song coming on the radio and busting out into a dance party even if only tapping your foot and shaking your shoulders because the rest of you isn't working. Fun is "lunch and learns" and library events because I'm a nerd. Fun is reading the newspaper while drinking coffee. Fun is getting something in the mail- it's like Christmas every day! Fun is finding out there is a giveaway. Fun is seeing family you haven't seen in a while even if only for a moment. Fun is getting an adrenalin rush and doing laps around the living room. Fun is realizing you fit in your mom's clothes and now have double the choice in things to wear. Fun is playing with dogs. Fun is writing something very inappropriate on a list of things Dad is going to get from the bakery knowing he will hand that list to the employee rather than read it off and the employee will wonder why the heck such an inappropriate thing is written on his order (guilty!). Fun is creating our own stories for people we pass in the car. Fun is getting messages, emails and texts from people showing they care, that they are thinking of you, or just something to make you laugh. Fun is.... whatever you make it.
If I can have fun with the majority of my time spent laying in a bed or at doctors offices, you certainly can too. Fun surrounds you. Grab it. All it takes is having an open mind and looking at everything as an opportunity awaiting, in a positive light. Life is fun! Life is what YOU make it! Make it fun, make it good, make it worth it!
ps. a few hours left at your chance to win a $50 gift card! If I am one of the top 3 I will randomly draw one of you who donated to receive the gift card! Please consider making a contribution if you haven't already to the MG Walk Fundraiser... "For a world without Myasthenia Gravis"! Thank you!
Thursday, September 26, 2013
Thursday, September 19, 2013
Eeeeee!!!
Gosh I am so excited!
Ever since getting discharged from the hospital, whose name we will not mention, the end of April, I have been trying to resolve billing problems. This has caused me SO much stress. Why? Because they say one thing and do another. Excuse after excuse when I do get a hold of someone, but most of the time no one returns my calls, emails or snail mail letters. One big bill was for charges I was not responsible for per the contract with my insurance (charging for a computer to read off results, I mean come on!). I even had my insurance talk to them multiple times. I see the whole thing as fraud. One minute I'm told my account is on hold, the next I'm told its not. My major concern and why it stressed me out is because I did not want to get sent to collections and have it affect my credit.
Recently, I left a not so nice voice message when they once again didn't pick up, and I said I'm taking this to the next level. That I did. I got someone else involved, contacted the Better Business Bureau and contacted the Joint Commission. I actually woke up this morning thinking my next step is to contact the local news.
Thank God that step did not have to be taken. As I flipped through the pieces of mail I saw a letter from that hospital. I thought to myself, God please let this be a letter and/or a zero balance statement and not another bill! I opened the letter and oh my gosh my excitement skyrocketed! FINALLY!!!! My account balance is now zero- letter AND statement showing so. Thank you thank you thank you God!!! I prayed for this every day and a prayer was answered!!
Furthermore, there were two other billing issues unrelated that got settled this week as well! What a good week!
I'm thinking I should give a little update too. Long story short, I'm still the same physically. I think I last mentioned the last med I was on caused my leg to stop working. After discussing this with my doctor, we agreed that I would stop the medication and see how I did. I improved... I use the word improved lightly because all I mean by that is that I was back to "my normal" pre-this medication. But my ox sat is still dropping and breathing has still been worse. My INR (blood thickness/thinness) has been within therapeutic range for the PE treatment so most likely not another clot. It almost feels like an asthma feeling- which I was diagnosed with in Tx but then told I don't have it when I came back here. Maybe it's like a mild asthma brought on by allergies? Or maybe its all MG related? Or maybe POTS related? Who knows.
I have upcoming appointments with both my neurologist and pulmonologist so we'll see what's going on and what happens next. I'm kind of thinking immune suppressants are going to be the next option. Not thrilled about that one as they can cause SUPER serious side effects/resulting conditions and I literally can't be around anyone sick because I basically have zero immune system while on them. The purpose is to make my body stop attacking itself (auto immune disease). But we'll wait and see what the doctors say/think. Furthermore, my hematologist thinks she wants to keep me on the blood thinners past the 6 month mark. Booo to that. Tomorrow is 5 months so I would only have 1 month left. But she thinks with as active (or should say inactive) as I am, partnered with a clotting factor, it's not really safe to be off of them. I don't know what I think but I have an appointment with her next month to discuss it. The biggest concern being on them is of course the bleeding risk. And it's not a big concern, but I would like to be able to eat whatever I'd like without portioning my greens and eliminating my supplements.
Aquatic therapy has been ok. The first session we did WAY too much. My body stopped working for a few days. I explained this to her and how repeat motion makes MG really bad. So the next 2 sessions we just did standing in the pool and a little walking in pool. Lame right? Not really. It helps my balance, posture, strength, endurance, everything. And we added massage therapy. Who knew for the past 3 years insurance covers this! She said my back is super tight, which I knew, so we thought this would be a good idea and might help with the pain. One session of that so far and it made my lower back problem (fissuring/disc herniation) flair up but fortunately not for long. She'll work on my upper back next time. Skipping both therapies next week because I have too many other appointments.
Lastly, the MG Walk is in just over a week now. This is the MG Foundation of America's national annual fundraiser. The money raised goes towards research for treatment and search for a cure, advocacy and support and programming for MG patients/families. I feel strongly about supporting this organization as it directly helps me. Seeing as treatment hasn't worked thus far and I'm not improving, finding more treatment options would be awesome and finding a cure would be a true miracle!! I believe it can happen! BUT it does unfortunately take money to fund all of it. So if you haven't yet, and are able to, would you kindly make a donation? This is my challenge to you- $5. Just $5. If you are reading this and can donate just $5 I will most definitely meet my goal. Right now I'm just under $300 away from that goal! MG patients have the nickname of snowflakes because we are so much stronger and can do so much more when we come together. The same goes for this- if all of my family and friends can donate, together we can make a difference. Thank you so much for anything you can give! And thank you again to those who already have donated!!
Many many blessings to you all!
Ever since getting discharged from the hospital, whose name we will not mention, the end of April, I have been trying to resolve billing problems. This has caused me SO much stress. Why? Because they say one thing and do another. Excuse after excuse when I do get a hold of someone, but most of the time no one returns my calls, emails or snail mail letters. One big bill was for charges I was not responsible for per the contract with my insurance (charging for a computer to read off results, I mean come on!). I even had my insurance talk to them multiple times. I see the whole thing as fraud. One minute I'm told my account is on hold, the next I'm told its not. My major concern and why it stressed me out is because I did not want to get sent to collections and have it affect my credit.
Recently, I left a not so nice voice message when they once again didn't pick up, and I said I'm taking this to the next level. That I did. I got someone else involved, contacted the Better Business Bureau and contacted the Joint Commission. I actually woke up this morning thinking my next step is to contact the local news.
Thank God that step did not have to be taken. As I flipped through the pieces of mail I saw a letter from that hospital. I thought to myself, God please let this be a letter and/or a zero balance statement and not another bill! I opened the letter and oh my gosh my excitement skyrocketed! FINALLY!!!! My account balance is now zero- letter AND statement showing so. Thank you thank you thank you God!!! I prayed for this every day and a prayer was answered!!
Furthermore, there were two other billing issues unrelated that got settled this week as well! What a good week!
I'm thinking I should give a little update too. Long story short, I'm still the same physically. I think I last mentioned the last med I was on caused my leg to stop working. After discussing this with my doctor, we agreed that I would stop the medication and see how I did. I improved... I use the word improved lightly because all I mean by that is that I was back to "my normal" pre-this medication. But my ox sat is still dropping and breathing has still been worse. My INR (blood thickness/thinness) has been within therapeutic range for the PE treatment so most likely not another clot. It almost feels like an asthma feeling- which I was diagnosed with in Tx but then told I don't have it when I came back here. Maybe it's like a mild asthma brought on by allergies? Or maybe its all MG related? Or maybe POTS related? Who knows.
I have upcoming appointments with both my neurologist and pulmonologist so we'll see what's going on and what happens next. I'm kind of thinking immune suppressants are going to be the next option. Not thrilled about that one as they can cause SUPER serious side effects/resulting conditions and I literally can't be around anyone sick because I basically have zero immune system while on them. The purpose is to make my body stop attacking itself (auto immune disease). But we'll wait and see what the doctors say/think. Furthermore, my hematologist thinks she wants to keep me on the blood thinners past the 6 month mark. Booo to that. Tomorrow is 5 months so I would only have 1 month left. But she thinks with as active (or should say inactive) as I am, partnered with a clotting factor, it's not really safe to be off of them. I don't know what I think but I have an appointment with her next month to discuss it. The biggest concern being on them is of course the bleeding risk. And it's not a big concern, but I would like to be able to eat whatever I'd like without portioning my greens and eliminating my supplements.
Aquatic therapy has been ok. The first session we did WAY too much. My body stopped working for a few days. I explained this to her and how repeat motion makes MG really bad. So the next 2 sessions we just did standing in the pool and a little walking in pool. Lame right? Not really. It helps my balance, posture, strength, endurance, everything. And we added massage therapy. Who knew for the past 3 years insurance covers this! She said my back is super tight, which I knew, so we thought this would be a good idea and might help with the pain. One session of that so far and it made my lower back problem (fissuring/disc herniation) flair up but fortunately not for long. She'll work on my upper back next time. Skipping both therapies next week because I have too many other appointments.
Lastly, the MG Walk is in just over a week now. This is the MG Foundation of America's national annual fundraiser. The money raised goes towards research for treatment and search for a cure, advocacy and support and programming for MG patients/families. I feel strongly about supporting this organization as it directly helps me. Seeing as treatment hasn't worked thus far and I'm not improving, finding more treatment options would be awesome and finding a cure would be a true miracle!! I believe it can happen! BUT it does unfortunately take money to fund all of it. So if you haven't yet, and are able to, would you kindly make a donation? This is my challenge to you- $5. Just $5. If you are reading this and can donate just $5 I will most definitely meet my goal. Right now I'm just under $300 away from that goal! MG patients have the nickname of snowflakes because we are so much stronger and can do so much more when we come together. The same goes for this- if all of my family and friends can donate, together we can make a difference. Thank you so much for anything you can give! And thank you again to those who already have donated!!
Many many blessings to you all!
Tuesday, September 17, 2013
This is where it begins
I wanted to write about something, but God says write about "you", meaning me. Uggh. I don't mean to complain I just have no idea what to say this time. How about a random post? Let's see what this turns into...
Life. Wait a minute, I'm already off topic. My life? Alright alright. My life. I thought I had it all planned out. I would go to school, get married, work as an event planner traveling the world- or at least the country, eventually start my own business, own a couple dogs, buy a house, enjoy entertaining at our house, so on and so forth until retirement, when my husband and I would relax, drink wine, sit on the porch, travel, overlook the beach, and that getting sick part wouldn't hit until the age of 85+. That was the plan.
Well, I completed the school, married and event planner part. The rest, not so much. That getting sick at the age of 85+ hit me quite a few years early... about 60 years early. People say it's better it happens younger because you have your whole life ahead of you and you're younger so you'll bounce back. Honestly, I very much dislike repeatedly hearing this. I don't like to be reminded that I'm sick at a young age. And here's the other thing...
It is called chronic illness, not acute illness. Acute is something you will get better from like the flu, strep, even pneumonia. Chronic is not. Chronic means ongoing, possibly forever, no end in sight. Do not take what I'm saying as negative, it's actually the opposite. It's coming to acceptance on that which I've been given, chronic illness. It's making peace with it and figuring out how to live my life with this uninvited friend. Whenever people do the opposite and act like it's acute when it is not by asking or implying that I'm better or will get better, I'm not a fan of that. You can have hope. I have hope. But just don't be in denial.
So, my new life. I have no plans. Of course there are things I hope for, like going into remission being one of them, but how can you "plan" to go into remission? You can't. Thus, no plan. I take it day by day. I walk through what comes to me. I take in what is presented. I give out what I am able.
My eyes were closed and now they are open. Before getting sick, I had this plan and that's all I saw, that's all I was going for in life. "The American Dream" (revised slightly), right? Not so. I see now how fake this world and many people in it can be. Is it really the American Dream? Or should it be the American Dream? Because if it really was would all this nonsense we are surrounded with matter? Value people, not objects. Use objects, not people. We have it all wrong. Media and marketing spits out what it wants you to hear, what it wants you to believe, where it wants to guide you. Technology and entertainment has turned us into robots in some sort. Where is the true joy? The real meaning of life?
I'll tell you where. It's back many years ago. When families used to run around outside, play board games, have dinner together and actually talk. No one had cell phones or the internet or video games. Maybe I was born in the wrong era but I strongly feel we've gone so far in the wrong direction.
I don't know where this post is going. Heck I didn't even know where it began. It is what it is. Such is life. You can pull good out of bad or you can pull bad out of good. You can do whatever you want to do. But I hope what you do is worth it. I hope what you do makes a difference. I hope what you do opens your eyes to the beauty that surrounds you and closes them to the false make up of this materialist world.
The End? Or is it the beginning. You decide.
Life. Wait a minute, I'm already off topic. My life? Alright alright. My life. I thought I had it all planned out. I would go to school, get married, work as an event planner traveling the world- or at least the country, eventually start my own business, own a couple dogs, buy a house, enjoy entertaining at our house, so on and so forth until retirement, when my husband and I would relax, drink wine, sit on the porch, travel, overlook the beach, and that getting sick part wouldn't hit until the age of 85+. That was the plan.
Well, I completed the school, married and event planner part. The rest, not so much. That getting sick at the age of 85+ hit me quite a few years early... about 60 years early. People say it's better it happens younger because you have your whole life ahead of you and you're younger so you'll bounce back. Honestly, I very much dislike repeatedly hearing this. I don't like to be reminded that I'm sick at a young age. And here's the other thing...
It is called chronic illness, not acute illness. Acute is something you will get better from like the flu, strep, even pneumonia. Chronic is not. Chronic means ongoing, possibly forever, no end in sight. Do not take what I'm saying as negative, it's actually the opposite. It's coming to acceptance on that which I've been given, chronic illness. It's making peace with it and figuring out how to live my life with this uninvited friend. Whenever people do the opposite and act like it's acute when it is not by asking or implying that I'm better or will get better, I'm not a fan of that. You can have hope. I have hope. But just don't be in denial.
So, my new life. I have no plans. Of course there are things I hope for, like going into remission being one of them, but how can you "plan" to go into remission? You can't. Thus, no plan. I take it day by day. I walk through what comes to me. I take in what is presented. I give out what I am able.
My eyes were closed and now they are open. Before getting sick, I had this plan and that's all I saw, that's all I was going for in life. "The American Dream" (revised slightly), right? Not so. I see now how fake this world and many people in it can be. Is it really the American Dream? Or should it be the American Dream? Because if it really was would all this nonsense we are surrounded with matter? Value people, not objects. Use objects, not people. We have it all wrong. Media and marketing spits out what it wants you to hear, what it wants you to believe, where it wants to guide you. Technology and entertainment has turned us into robots in some sort. Where is the true joy? The real meaning of life?
I'll tell you where. It's back many years ago. When families used to run around outside, play board games, have dinner together and actually talk. No one had cell phones or the internet or video games. Maybe I was born in the wrong era but I strongly feel we've gone so far in the wrong direction.
I don't know where this post is going. Heck I didn't even know where it began. It is what it is. Such is life. You can pull good out of bad or you can pull bad out of good. You can do whatever you want to do. But I hope what you do is worth it. I hope what you do makes a difference. I hope what you do opens your eyes to the beauty that surrounds you and closes them to the false make up of this materialist world.
The End? Or is it the beginning. You decide.
Monday, September 9, 2013
POTS or MG?
A week ago I started a new medication- it constricts your blood vessels to help with the pooling in your legs and raise your blood pressure. I had some side effects, none that seemed too serious, so I put a message in with my doctor, he said keep taking it and I kept taking it. A week later, I don't think it's benefiting me, in fact perhaps making me worse. I put in another message with my doctor and waiting to hear back.
In question- is it MG or POTS? Then could it be due from this new medication, due from starting aquatic therapy, due from the heat, due from overdoing it? I'm referring to the past few days. Let's start with the biggest concern.
Saturday while making a quick stop at a store with my mom, I chose to walk because the store doesn't leave enough space between displays for a wheel chair. Stores really should fix that problem... if I could use my wheel chair I'd spend more time in there thus probably give them a bigger purchase. But instead I had to walk and it was cut short because my leg pretty much decided it didn't want to work. This was the most mild of the few times this happened. Fast forward to that evening. I shouldn't have, but I wanted to, so I went to church. On the walk in, my leg went dead. And then twice since then.
I'm not talking oh your leg falls asleep shake it and you're fine. I'm talking your legs are already weak and progress to extreme weakness in a matter of seconds. Your leg feels like it is weighted down with bricks and nailed to the ground. Your leg will not move. And then it hits the other leg. This turns into your legs being unable to support the rest of your body and if you don't sit down right away you will most likely fall to the ground as your legs collapse. Luckily all of the times it happened it was mainly just the one leg that I like shuffled/slid that leg, walking with the other til I got to a chair to sit down. I had to sit the entire church service and I always feel bad about that but then again it's better I'm there and sitting than not there at all. I use the wheel chair when someone goes with me. But when I'm alone which I've been trying to do more, I can't use the wheel chair because my arms are just as weak as my legs and I can't push myself.
Anyways, I still don't think I'm describing it well. It's scary. It's never happened before. Even when I was in the hospital, I had all over weakness and trouble breathing and swallowing but my legs alone were not to this level of weakness. This is unable to move at all- weakness. So I'm resting as much as I can right now with "breaks" of walking to the bathroom and back or to the kitchen and back etc. Sounds ridiculous but it's what I have to do. I could go off on a tangent on this topic... I'll try to remember that for a later post.
Next concern, I'm supposed to be taking my blood pressure regularly because of this new medication. And I have an ox sat meter that I was told to use after my PE, so I take that every now and then especially if my breathing is worse. Well just over the past week, since starting this medication, both have not been very steady or stable. My blood pressure has been above normal- which is crazy because it never does that. And then it will drop to very low again. Most concerning to me was a bp of 93/83... not the numbers alone so much but that they are 10 numbers apart!! Not many know about pulse pressure but it is the difference between the two numbers. 40ish is normal. Anything closer than 20 is very alarming. 10 you really should be in the ER. More concerning was this was just after I did some light cleaning maybe 5-10 minutes just disinfecting around the house. (See I do try to be as active as I can!) So this would be considered "after exertion". I immediately laid down and as time went on the numbers grew further apart. I told my doctor and I'm waiting to hear back. That's scary and indicative of a heart problem. POTS can be considered a heart condition but not like that. Furthermore, my o2 readings have been dropping like crazy. They should be 99-100. Ever since my PE they've been 95-99, never reached 100 again (and when I was in the hospital with the PE dropped as low as 79). Well in the past week its been dropping often to 90, 80s and hit 79 three times. My meter might not be exact but even just comparing to what is my norm off this meter, a bit scary. Asking the doctor about this as well. Lord, please don't let me have another clot, or a heart condition, or a lung problem, please!
Well, that was a long paragraph. Oops. Anyways. What else? I think that's enough, don't you? This is what I've been thinking though. I've been pushing myself a bit, obviously- cleaning, aquatic therapy, church, store... yowza! And it's not been worth it. I feel my quality of life is better when I do very little but give it my all, than if I try to do more but have nothing left in me to give to it. Of course I'd rather feel my best and do all I can at my best. But the fact is my body isn't nearly at its best- close to its worst its been and has been like that ever since I went in the hospital in March. There's been no improvement. I've learned how to deal with it. But then people tend to make me feel like I need to do more even when I can't and when I shouldn't- so I push myself and I pay for it. I think I'll go back to where I was before this past week... where I spend most of my time resting, enjoy more time blogging or writing or creating things to sell or doing surveys for a bit of cash, watching old movies before the movies took a turn for the worse, catching up with friends if only by email... I enjoy it. And most importantly doing that allows my body what it needs in order to make it through each day. I was always fast paced, I may as well enjoy being slow paced while its been handed to me. Gosh I'm just rambling now.
I'm hungry. See I can work up an appetite just laying in bed. Why? Because what you see is me laying down. But what my insides are doing is constantly running a marathon. This athlete needs to eat.
Ciao!
In question- is it MG or POTS? Then could it be due from this new medication, due from starting aquatic therapy, due from the heat, due from overdoing it? I'm referring to the past few days. Let's start with the biggest concern.
Saturday while making a quick stop at a store with my mom, I chose to walk because the store doesn't leave enough space between displays for a wheel chair. Stores really should fix that problem... if I could use my wheel chair I'd spend more time in there thus probably give them a bigger purchase. But instead I had to walk and it was cut short because my leg pretty much decided it didn't want to work. This was the most mild of the few times this happened. Fast forward to that evening. I shouldn't have, but I wanted to, so I went to church. On the walk in, my leg went dead. And then twice since then.
I'm not talking oh your leg falls asleep shake it and you're fine. I'm talking your legs are already weak and progress to extreme weakness in a matter of seconds. Your leg feels like it is weighted down with bricks and nailed to the ground. Your leg will not move. And then it hits the other leg. This turns into your legs being unable to support the rest of your body and if you don't sit down right away you will most likely fall to the ground as your legs collapse. Luckily all of the times it happened it was mainly just the one leg that I like shuffled/slid that leg, walking with the other til I got to a chair to sit down. I had to sit the entire church service and I always feel bad about that but then again it's better I'm there and sitting than not there at all. I use the wheel chair when someone goes with me. But when I'm alone which I've been trying to do more, I can't use the wheel chair because my arms are just as weak as my legs and I can't push myself.
Anyways, I still don't think I'm describing it well. It's scary. It's never happened before. Even when I was in the hospital, I had all over weakness and trouble breathing and swallowing but my legs alone were not to this level of weakness. This is unable to move at all- weakness. So I'm resting as much as I can right now with "breaks" of walking to the bathroom and back or to the kitchen and back etc. Sounds ridiculous but it's what I have to do. I could go off on a tangent on this topic... I'll try to remember that for a later post.
Next concern, I'm supposed to be taking my blood pressure regularly because of this new medication. And I have an ox sat meter that I was told to use after my PE, so I take that every now and then especially if my breathing is worse. Well just over the past week, since starting this medication, both have not been very steady or stable. My blood pressure has been above normal- which is crazy because it never does that. And then it will drop to very low again. Most concerning to me was a bp of 93/83... not the numbers alone so much but that they are 10 numbers apart!! Not many know about pulse pressure but it is the difference between the two numbers. 40ish is normal. Anything closer than 20 is very alarming. 10 you really should be in the ER. More concerning was this was just after I did some light cleaning maybe 5-10 minutes just disinfecting around the house. (See I do try to be as active as I can!) So this would be considered "after exertion". I immediately laid down and as time went on the numbers grew further apart. I told my doctor and I'm waiting to hear back. That's scary and indicative of a heart problem. POTS can be considered a heart condition but not like that. Furthermore, my o2 readings have been dropping like crazy. They should be 99-100. Ever since my PE they've been 95-99, never reached 100 again (and when I was in the hospital with the PE dropped as low as 79). Well in the past week its been dropping often to 90, 80s and hit 79 three times. My meter might not be exact but even just comparing to what is my norm off this meter, a bit scary. Asking the doctor about this as well. Lord, please don't let me have another clot, or a heart condition, or a lung problem, please!
Well, that was a long paragraph. Oops. Anyways. What else? I think that's enough, don't you? This is what I've been thinking though. I've been pushing myself a bit, obviously- cleaning, aquatic therapy, church, store... yowza! And it's not been worth it. I feel my quality of life is better when I do very little but give it my all, than if I try to do more but have nothing left in me to give to it. Of course I'd rather feel my best and do all I can at my best. But the fact is my body isn't nearly at its best- close to its worst its been and has been like that ever since I went in the hospital in March. There's been no improvement. I've learned how to deal with it. But then people tend to make me feel like I need to do more even when I can't and when I shouldn't- so I push myself and I pay for it. I think I'll go back to where I was before this past week... where I spend most of my time resting, enjoy more time blogging or writing or creating things to sell or doing surveys for a bit of cash, watching old movies before the movies took a turn for the worse, catching up with friends if only by email... I enjoy it. And most importantly doing that allows my body what it needs in order to make it through each day. I was always fast paced, I may as well enjoy being slow paced while its been handed to me. Gosh I'm just rambling now.
I'm hungry. See I can work up an appetite just laying in bed. Why? Because what you see is me laying down. But what my insides are doing is constantly running a marathon. This athlete needs to eat.
Ciao!
Tuesday, September 3, 2013
New Med Day 1 and then some
Today was the first day of trying a new medication. Typically I would have made a little post on facebook, asked for prayer, etc. But other than mentioning it in my last blog I kind of kept it hush hush. I had a feeling it'll be ok and I didn't want to do anything that showed God I doubted that.
This medication is supposed to help with the pooling of blood in legs/circulation and increase my blood pressure (both POTS problems). The hope is that in doing so my heart rate will stabilize not having to work so hard or whatnot.
I took a tiny dosage, as always, because of my extreme medication sensitivity (another POTS thing). It apparently stays in your system about 4 hours which is right about now so yay to making it through! Though it feels and appears as if its still in my system. It did seem to increase my blood pressure though its hard to gauge since its been all over the place lately. The highest reading today was 144/90...slightly scary because that is super duper high for me. (The other day I was 70something over 50... lowest top number I've ever been and also pretty scary!) I did get some side effects but I expected to after talking with other patients taking this. The worst was that it seemed like my breathing got worse- that part was not expected. If you've ever had a CT with contrast you probably know the feeling of the heat rush through your body and for me I get like a tightness type of feeling in my chest and throat during it, goes away right after the heat rush stops. I had that feeling with this, weird. I think that's what was making my breathing feel worse. Then this is kind of minor I guess but like a constricting/tight feeling in my head which other patients reported, and then every time I stand or walk I can like feel the blood vessels or whatever it is tightening in my legs its an odd sensation. And then just now I got this like tightening feeling/pain in my upper back/shoulders... I have no idea if its related or not. But overall, 144/90 is probably just as bad as my average/normal of like 90/60 if not worse, so I'm going to be talking to my doctor about this and see what he wants me to do.
I was going to give more of an update about aqautic therapy and such but in the middle of writing this I had an unexpected huge stressor that now has me not thinking straight. I've said it before and I'll say it again and again and again. My advice is never ever ever go to [name removed as it is FINALLY resolved] Hospital. The stress they have caused me in addition to the complication of the pulmonary embolism that could have killed me is beyond insane. They are now trying to charge me thousands of dollars for something I do not owe per their contract with my insurance! My insurance has spoken with them multiple times and tells them I have a zero balance yet then they send me a bill and have no record of this zero balance. This is INSANE. If I didn't care about my credit report or credit agencies or them coming after me for everything I've got, I'd let it go, but I do care. So please if you will, now I have a prayer request, that this billing garbage gets resolved immediately. 4 months of this I can't take it anymore! Please God make these fraud charges go away!!! Zero balance out my account and send a statement reflecting that and never ever ever let me have to hear from them or deal with them ever again! Amen to that!
Ok now that I got that frustration out, little update what I was originally going to do. I have my aquatic therapy eval last Friday but it was land not water for the eval. Over the weekend I was in a lot of pain as my back flaired up from the exercises, along with weakness. I can't take the flaxseed I used to because of the blood thinners so I just used some ice a little and dealt with it. The pain is better but still there. I'm hoping getting in the water this week will help me out a bit. The PT seemed really willing to work with me and she has had POTS patients before so that's a good thing. We just need to take it really slow... even just walking in the water is exercise for me especially because of the resistance from the water... so maybe we can start with that. My dr said my goal is to learn to swim. I doggy paddle haha.
Alright now I need to take a breather and hope to God this billing problem gets resolved so I can move on with my life and away from that hospital!
Thanks for reading, sorry this was a mish mosh mess.
This medication is supposed to help with the pooling of blood in legs/circulation and increase my blood pressure (both POTS problems). The hope is that in doing so my heart rate will stabilize not having to work so hard or whatnot.
I took a tiny dosage, as always, because of my extreme medication sensitivity (another POTS thing). It apparently stays in your system about 4 hours which is right about now so yay to making it through! Though it feels and appears as if its still in my system. It did seem to increase my blood pressure though its hard to gauge since its been all over the place lately. The highest reading today was 144/90...slightly scary because that is super duper high for me. (The other day I was 70something over 50... lowest top number I've ever been and also pretty scary!) I did get some side effects but I expected to after talking with other patients taking this. The worst was that it seemed like my breathing got worse- that part was not expected. If you've ever had a CT with contrast you probably know the feeling of the heat rush through your body and for me I get like a tightness type of feeling in my chest and throat during it, goes away right after the heat rush stops. I had that feeling with this, weird. I think that's what was making my breathing feel worse. Then this is kind of minor I guess but like a constricting/tight feeling in my head which other patients reported, and then every time I stand or walk I can like feel the blood vessels or whatever it is tightening in my legs its an odd sensation. And then just now I got this like tightening feeling/pain in my upper back/shoulders... I have no idea if its related or not. But overall, 144/90 is probably just as bad as my average/normal of like 90/60 if not worse, so I'm going to be talking to my doctor about this and see what he wants me to do.
I was going to give more of an update about aqautic therapy and such but in the middle of writing this I had an unexpected huge stressor that now has me not thinking straight. I've said it before and I'll say it again and again and again. My advice is never ever ever go to [name removed as it is FINALLY resolved] Hospital. The stress they have caused me in addition to the complication of the pulmonary embolism that could have killed me is beyond insane. They are now trying to charge me thousands of dollars for something I do not owe per their contract with my insurance! My insurance has spoken with them multiple times and tells them I have a zero balance yet then they send me a bill and have no record of this zero balance. This is INSANE. If I didn't care about my credit report or credit agencies or them coming after me for everything I've got, I'd let it go, but I do care. So please if you will, now I have a prayer request, that this billing garbage gets resolved immediately. 4 months of this I can't take it anymore! Please God make these fraud charges go away!!! Zero balance out my account and send a statement reflecting that and never ever ever let me have to hear from them or deal with them ever again! Amen to that!
Ok now that I got that frustration out, little update what I was originally going to do. I have my aquatic therapy eval last Friday but it was land not water for the eval. Over the weekend I was in a lot of pain as my back flaired up from the exercises, along with weakness. I can't take the flaxseed I used to because of the blood thinners so I just used some ice a little and dealt with it. The pain is better but still there. I'm hoping getting in the water this week will help me out a bit. The PT seemed really willing to work with me and she has had POTS patients before so that's a good thing. We just need to take it really slow... even just walking in the water is exercise for me especially because of the resistance from the water... so maybe we can start with that. My dr said my goal is to learn to swim. I doggy paddle haha.
Alright now I need to take a breather and hope to God this billing problem gets resolved so I can move on with my life and away from that hospital!
Thanks for reading, sorry this was a mish mosh mess.
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