A while back I posted how frustrated I was with that week's doctor visits. I didn't go into detail because I had something positive to talk about and didn't want to lower my mood with this. But I'll finally get to it now because it explains a lot in regards to the status of my health which is not good.
I have MG. I have POTS. I have mg AND pots.
Dr. Awesome turned into Dr. not so awesome anymore.
The end.
Just kidding. But that really does pretty much sum it up.
I saw my pulmonologist on Monday of that week. It was an extremely frustrating visit... not because of my doctor and certainly not because of the respiratory therapist, not even because of the receptionists. Why? Because of the resident or fellow or whoever he was assisting my doctor that day. Sometimes I get really good residents who really know their stuff and seem extremely interested in knowing more. This one was horrible. He was horrible because he made me feel horrible. He acted as if he knew it all. ALL. When he clearly didn't know a thing about MG or POTS. He asked me all of the questions I've been asked a billion times before but in a very condescending I am right you are wrong type of way. He pretty much argued me on everything I said when all I was doing was answering his questions truthfully. When I talked about my ox sat dropping after being upright for a while and walking he told me to stand up and immediately tested it and then proceeded to tell me it was normal. Um, duh! I said after standing or walking FOR A WHILE. He then said something along the lines of he doesn't know why I'm here and that they really can't do anything for me! Excuse me?! I'm here because my pulmonologist who happens to be head of that department told me to come for testing and a follow up visit, who told me my breathing is being compromised by MG, who told me I need to be monitored. I then got short in my replies to him and said "Am I going to get to see my doctor?" He said yes and that he would "fill him in". Excuse me but I'm pretty sure my doctor knows much more of what's going on with me than you do. Unbelievable. I hope I never see that resident again. It's people like that who should not be in this field. I left there that day feeling horrible, bashed and attacked.
Thank God it turned around a bit when my pulmonologist came in. Yes he did know what was going on with me, he does see a reason for my being there, and he treated me with respect. My pulmonary function tests were repeated and everything was about the same... good and bad. Nothing got much worse, but since the last time which was in May, nothing got better... including the tests that correlate with MG which were in the 20th and 30th percentile. BAD!! Last time I met with him, the thought was I would be put on immune suppressants so by the time I came back they would have kicked in and my MG and thus breathing would therefore have improved. But I haven't been put on immune suppressants so that didn't happen. What he wants to do is put me in respiratory therapy/pulmonary rehab... but not until my MG is controlled because if you work out my diaphragm without my MG controlled that's the same as exercising my muscles- it makes me worse, and in the area of my lungs it risks moving towards crisis. He understands this. I understand this.
Who doesn't understand this? Dr. Awesome aka Dr. not so awesome anymore. I had that visit that Friday of that same week. I'm annoyed because I was sent to him for the purpose of POTS. I am VERY thankful he put it all together and diagnosed me with that so I at least have an answer to what is going on. But I'm annoyed because when he did that I asked him if I should keep my appointment with dr so and so, the MG specialist. His reply "No. I treat that too. I can treat you for both." So I canceled that appointment with dr so and so, the MG specialist, whos wait time is many months out. Bad move. As soon as I did that Dr. not so awesome anymore kind of changed his views on everything. He more and more insists I'm not affected by MG. Are you kidding me??? If there is anything I've learned in the past 3.5 years of illness, it is I have learned my body! I have also done an extreme amount of research. Furthermore, after now talking with others, I've learned that others have been in this same situation with him! They have already been diagnosed with MG, they are told a treatment route, he diagnoses POTS and disregards and even removes their MG and MG treatment!
IF POTS is affecting me in a neuropathic way, it would be that the outter areas of my body would be more affected- hands, feet, etc. I absolutely do not match that. My muscle weakness is strongly focused towards the center of my body- back, abdomen, chest, upper arms, neck and upper legs. My swallowing, chewing, smiling, talking and vision have also been getting worse- all MG symptoms. My hands and feet, as I've been told many times before- which would be POTS related, are incredibly strong. Furthermore, I've been tested positive for MG 3 times by blood test and 2 times by EMG/nerve study. I have NEVER tested negative. Furthermore again I have had severe reactions to the meds on the "be cautious with" list for MG. Furthermore AGAIN I responded positively to plasmapheresis and mestinon in the sense of increased muscle use/strength. It's just unbelievable really that I have to go through this all over again... the doubt of doctors. I should not have to go through this again and again and again and again. I HAVE MG. And every doctor who has ever thought I didn't eventually came to the conclusion that I in fact do. I'm starting to think they do this either 1. to try to keep you sick and coming back or 2. to repeat unnecessary tests to make money or 3. because they really are clueless as ever about MG. Do I need to find ANOTHER neurologist? This is insane.
And so right now my pulmonologist and neurologist are butting heads and I'm siding with my pulmonologist- it's MG in regards to my breathing and muscle weakness, not POTS. I have POTS but POTS is not causing my breathing problems and muscle weakness. POTS is causing my dizziness, lightheadedness, nausea, trouble digesting, tempurature regulation, high/low heart rate, high/low blood pressure... everything but that which is MG.
So right now, I'm in essence, not being treated... at the worst possible time to not be treated due to other stressful happenings in my life. This is why I'm not only not improving but have next to no chance of improving at the moment. People who improve are people who are properly treated with medication and/or plasmapheresis etc. Mestinon sends more signals from nerve to muscle so to try to allow my muscle to work better/longer but it does not treat the disease. (It would be like taking a pain killer for a broken bone- it might help the pain but it's not treating the broken bone.) So it's as if I'm living with MG without seeing a doctor when I've seen more than I can count. So no, it's not that we're trying to figure out the right meds. It's not that meds aren't working. It's not that we're "waiting" for something to kick in. It's that the doctor is not properly treating my MG! This is not good because although those who don't truly understand MG may disagree, it's been shown that MG IS progressive. And I've felt it. Clearly since I went from still being able to exercise/play sports in the beginning, to occasionally do that, to not do that but do housework, to rarely do housework, to rest basically all day because my body won't do anything. It's progressive and if it progresses any further I may as well be in a nursing home. It's dangerous that I'm not being treated. And my POTS isn't being treated either since we tried 2 things, both failed, and I guess he therefore gave up.
And thus, after that week, I felt so defeated. I felt back in the middle of the circle of doctors who can't figure it out, when it's already been figured out. Stop trying to diagnose that which has already been diagnosed.... many many times! Yes doctors it's a rare disease and it sucks that I have it, but I DO, so treat me for it!!
I'm ready to just up and move, again, just to find new doctors who will believe me, again. I almost feel like this is a lost cause. Jailed within my own body and no one will let me out. At least I have the Spirit of God within me so I'm never alone. This is how I get through each and every day...
http://www.youtube.com/watch?v=ndrj9Su0Azk Please listen to this. Hold on to the only one who can get you through.
Thanks for reading and allowing me to vent on this without judging me for "being negative." I'm a positive person who has negative moments. We all do. Let it be and let it out, and praise God through it all! Prayers for this and the other situation are much appreciated! Restoration on all accounts! Thank you!
Friday, October 18, 2013
Wednesday, October 16, 2013
Good News
So, this week I decided at the end of every day I will pull out at least one positive about that day. End result- it's a good week no matter what happens. I decided today to post that positive here since it is somewhat of an update.
Just some background for anyone just starting to read... I had my thymectomy for Myasthenia Gravis in April. It resulted in the complication of a pulmonary embolism. Thus, I've been on warfarin (blood thinner treatment). I was originally told 6 months, which brings us to right about now.
Today I met with my hematologist to discuss the possibility of coming off the warfarin. We were weighing the options- stay on, stop but start heparin shots (they are major ouch!) or stop. My neurologist wants me off so he can do testing he can't do while I'm on warfarin, and he thinks it could be affecting my progress in some regard. My pulmonologist wants me to stay on until my MG is controlled to where I can physically be more active. I see both sides, but what I wanted was to be able to come off and start taking flax seed.
Now, flax seed is not used as treatment, but it does make you more prone to bleeding. Actually in the past I needed my knee cauterized after cutting it because the bleeding would not stop on its own. Ouch again. Anyways, I take flax seed for inflammation/pain because advil hurts my stomach and pain killers can make MG worse plus my sensitivity to meds. I haven't been able to take it while on warfarin, so any pain, other than when I was monitored in the hospital, has gone without anything to relieve it. So I wanted to be able to stop the warfarin to be able to take flax seed and also that flax seed may somewhat help thin the blood slightly, maybe. I also wanted to be able to take my digestive enzymes again because it helps me eat more normally and I couldn't take those while on warfarin. Lastly, of course not having to monitor my blood and be cautious that I don't grab a grapefruit or cranberry juice (both which I was very used to doing) would be nice to not be concerned about anymore.
My d-dimer came back... low!! That means my risk for having clots right now is low. Based on this and a negative scan in between starting treatment and now, she is letting me come off soon!! I will be taking it through the end of the month and then I get to stop. Then 4-6 weeks later I have to go in for some more tests. If all is clear I can stay off!! The only thing is on any long car ride or plane ride or whenever I'm in the hospital or sick on bedrest I need to do heparin or loveanox shots. And I am also in agreement with her that in order for this to happen I need to get up and move around at least once an hour. That will be the difficult part when I'm having an incredibly bad day but I will do it if it means getting off warfarin! So yay!
That is my good news and maybe doesn't sound too exciting but get this... I survived a pulmonary embolism- bilateral multiple clot pulmonary embolism!! Praise God!
That's really all I have to say for now because I'm overly tired. Too many appointments and too much stress. I will ask you all for prayer on something close to my heart today. If you know what it is please pray for it. And if you don't, I still appreciate prayers for my health. Lord, make me whole again- healthy, happy and serving You!
And I'll leave you all with this. "Praise You in this storm" by Casting Crowns. Look it up and listen if you want. Never give up and never give up hope.
Just some background for anyone just starting to read... I had my thymectomy for Myasthenia Gravis in April. It resulted in the complication of a pulmonary embolism. Thus, I've been on warfarin (blood thinner treatment). I was originally told 6 months, which brings us to right about now.
Today I met with my hematologist to discuss the possibility of coming off the warfarin. We were weighing the options- stay on, stop but start heparin shots (they are major ouch!) or stop. My neurologist wants me off so he can do testing he can't do while I'm on warfarin, and he thinks it could be affecting my progress in some regard. My pulmonologist wants me to stay on until my MG is controlled to where I can physically be more active. I see both sides, but what I wanted was to be able to come off and start taking flax seed.
Now, flax seed is not used as treatment, but it does make you more prone to bleeding. Actually in the past I needed my knee cauterized after cutting it because the bleeding would not stop on its own. Ouch again. Anyways, I take flax seed for inflammation/pain because advil hurts my stomach and pain killers can make MG worse plus my sensitivity to meds. I haven't been able to take it while on warfarin, so any pain, other than when I was monitored in the hospital, has gone without anything to relieve it. So I wanted to be able to stop the warfarin to be able to take flax seed and also that flax seed may somewhat help thin the blood slightly, maybe. I also wanted to be able to take my digestive enzymes again because it helps me eat more normally and I couldn't take those while on warfarin. Lastly, of course not having to monitor my blood and be cautious that I don't grab a grapefruit or cranberry juice (both which I was very used to doing) would be nice to not be concerned about anymore.
My d-dimer came back... low!! That means my risk for having clots right now is low. Based on this and a negative scan in between starting treatment and now, she is letting me come off soon!! I will be taking it through the end of the month and then I get to stop. Then 4-6 weeks later I have to go in for some more tests. If all is clear I can stay off!! The only thing is on any long car ride or plane ride or whenever I'm in the hospital or sick on bedrest I need to do heparin or loveanox shots. And I am also in agreement with her that in order for this to happen I need to get up and move around at least once an hour. That will be the difficult part when I'm having an incredibly bad day but I will do it if it means getting off warfarin! So yay!
That is my good news and maybe doesn't sound too exciting but get this... I survived a pulmonary embolism- bilateral multiple clot pulmonary embolism!! Praise God!
That's really all I have to say for now because I'm overly tired. Too many appointments and too much stress. I will ask you all for prayer on something close to my heart today. If you know what it is please pray for it. And if you don't, I still appreciate prayers for my health. Lord, make me whole again- healthy, happy and serving You!
And I'll leave you all with this. "Praise You in this storm" by Casting Crowns. Look it up and listen if you want. Never give up and never give up hope.
Monday, October 14, 2013
That's a wrap
I originally started this blog to keep my friends and family informed on how I was doing. It's difficult to email or call so many people and repeat the same thing over and over. This was my go to point. I also thought it would be great at making my family and friends aware of what MG is because it is so rare. Thank God, I haven't been back in the hospital since I was discharged from my pulmonary embolism the end of April, so my "progress" hasn't really changed. Thus this blog has become more of a space to talk about different things that happen in the life of someone with MG, and now also with POTS.
I never imagined my blog would turn into what it has. Nearly 11,000 views. I am beyond amazed. I am so thankful for all of you who read my blog and share my blog. My last post has over 400 views on it alone. Things like that are a breakthrough in spreading awareness. That is what us MGers need, awareness. So thank you so much for reading. Please keep spreading the word. Make Myasthenia Gravis a household name... so when we "look fine" we aren't judged as actually being fine, so when we land in the ER in crisis we aren't sent home being told our ox sat is normal (it can be normal while our life is on the line), so that our family and friends know how they can help and that we still need them in our lives and appreciate them staying in our lives, so that we can get more funding to find a CURE! Again, thank you.
I did just a little updating and need to do more to create a page about POTS now too. For now I added a subscribe by email button. It's to the right of where you are reading this right now. I know since doing so some have told me they subscribed. However, I also know many started reading just recently. So I wanted to take a moment to re-post some of my top blog posts. Anyone who hasn't read them or just wants to read them again, here you go (from oldest to newest so they make sense when reading)...
Thankful We have much to be thankful for.
Just a thought Explaining why we with MG do what we do... or don't do.
Great Article The spoon theory.
Goodbye Thymus To anyone facing thymectomy, speaks of my experience right after. Remember everyone is different.
Pulmonary Embolism The risk became real.
Unclutter your home Unclutter your mind Because I'm a neat freak... and because it helps.
Listen to your body It could save your life.
Random Optimism Just for fun.
Adaptation Good for family and friends to read to learn the changes we HAVE to make in our lives.
Truth Sometimes the best place to find it is from the patient.
Appreciate You can always find the good within the bad.
Part 1 These next 3 are about my POTS diagnosis and linking to more information about it.
Part 2
Part 3
Did that just happen? Some people DO get those horrible side effects we are warned of.
Fun Just because we are chronically sick doesn't mean we can't have fun.
Suffocating from the inside out The most recent and most popular post speaking of MG crisis/warning signs.
Also, on the top of any page you can click on the links to my story, learn more about MG, q&a and what you can do to help. There is a lot of information and I hope to continue to bring you more.
Lastly, if anyone wants items to bring awareness- shirts, mugs, bags, even items for pets!- please visit www.cafepress.com/fightmg for Myasthenia Gravis items and www.cafepress.com/DysautonomiaAwareness for POTS/Dysautonomia items.
I am so blessed to be able to make the most of my illness through doing what I love, writing, as well as designing items, both to promote awareness. You all have made this possible by being committed to encouraging and supporting me, and of course by reading my posts, donating to the cause and purchasing my items. I truly appreciate each and every one of you in my life. Above all else, all the glory goes to God. He has transformed me in a way I used to think was not possible. I can do ALL things through Christ who strengthens me. Philippians 4:13 It's true.
Thank you! God bless.
I never imagined my blog would turn into what it has. Nearly 11,000 views. I am beyond amazed. I am so thankful for all of you who read my blog and share my blog. My last post has over 400 views on it alone. Things like that are a breakthrough in spreading awareness. That is what us MGers need, awareness. So thank you so much for reading. Please keep spreading the word. Make Myasthenia Gravis a household name... so when we "look fine" we aren't judged as actually being fine, so when we land in the ER in crisis we aren't sent home being told our ox sat is normal (it can be normal while our life is on the line), so that our family and friends know how they can help and that we still need them in our lives and appreciate them staying in our lives, so that we can get more funding to find a CURE! Again, thank you.
I did just a little updating and need to do more to create a page about POTS now too. For now I added a subscribe by email button. It's to the right of where you are reading this right now. I know since doing so some have told me they subscribed. However, I also know many started reading just recently. So I wanted to take a moment to re-post some of my top blog posts. Anyone who hasn't read them or just wants to read them again, here you go (from oldest to newest so they make sense when reading)...
Thankful We have much to be thankful for.
Just a thought Explaining why we with MG do what we do... or don't do.
Great Article The spoon theory.
Goodbye Thymus To anyone facing thymectomy, speaks of my experience right after. Remember everyone is different.
Pulmonary Embolism The risk became real.
Unclutter your home Unclutter your mind Because I'm a neat freak... and because it helps.
Listen to your body It could save your life.
Random Optimism Just for fun.
Adaptation Good for family and friends to read to learn the changes we HAVE to make in our lives.
Truth Sometimes the best place to find it is from the patient.
Appreciate You can always find the good within the bad.
Part 1 These next 3 are about my POTS diagnosis and linking to more information about it.
Part 2
Part 3
Did that just happen? Some people DO get those horrible side effects we are warned of.
Fun Just because we are chronically sick doesn't mean we can't have fun.
Suffocating from the inside out The most recent and most popular post speaking of MG crisis/warning signs.
Also, on the top of any page you can click on the links to my story, learn more about MG, q&a and what you can do to help. There is a lot of information and I hope to continue to bring you more.
Lastly, if anyone wants items to bring awareness- shirts, mugs, bags, even items for pets!- please visit www.cafepress.com/fightmg for Myasthenia Gravis items and www.cafepress.com/DysautonomiaAwareness for POTS/Dysautonomia items.
I am so blessed to be able to make the most of my illness through doing what I love, writing, as well as designing items, both to promote awareness. You all have made this possible by being committed to encouraging and supporting me, and of course by reading my posts, donating to the cause and purchasing my items. I truly appreciate each and every one of you in my life. Above all else, all the glory goes to God. He has transformed me in a way I used to think was not possible. I can do ALL things through Christ who strengthens me. Philippians 4:13 It's true.
Thank you! God bless.
Wednesday, October 9, 2013
Suffocating from the inside out
First, just to clear up from that title, I am not nor was I suffocating. I'm ok.
Second, to get to what that title means.
Yesterday, I had a doctor's appointment at 12:00. I got there early as I usually do. I handed in my paperwork that I filled out at home (they knew I was filling it out at home) then I waited. At 12:15 the nurse took me in, so I was already waiting about a half hour but that's to be expected at the doctor. She briefly went over a few things, took my blood pressure, then in her words "I'll have the doctor come right in." RIGHT in. Well, "right in" meant an hour later, 1.5 hours later if you take into account my appointment was at 12 but he didn't come in til 1:30. No apology, explanation, nothing. I understand sometimes things happen, but here's the thing. When I was in the waiting room I heard the receptionist say something to my nurse about 1:30 and at that time the nurse took in a different patient before me even though I arrived first. My thought is they knew I wouldn't see the doctor til 1:30. Why on earth would you give me an appointment time of 12:00 then? And if something came up, why not make me aware??
So anyways, once the doctor finally came in he spent about an hour and a half with me. He was very thorough which was good. BUT I started fading out before he even got in the room and especially once we started talking. And then after my visit with him, the nurse came back in and went over some stuff with me. Total time in the office was 4 hours! To any healthy person, you'd be thinking geeze that's a long appointment or that's ridiculous or I won't go back there... something like that. But to me, it's different. I brought magazines, I can hang out and do nothing and be fine with it. What I'm not fine with is my body not being able to tolerate that. "Just sitting" wears out my muscles. "Just talking" wears out my muscles. "Just being alert" exhausts me.
So getting to the title of my post.... when you have MG and your back/abdomen/anything surrounding the diaphragm or the diaphragm muscles get tired... that is putting you at risk of MG crisis which is basically suffocating from the inside out. With MG the more you use a muscle the weaker it gets and less it works until it is pretty much paralyzed for the time being. That doesn't just happen with arms and legs. That happens with face, with swallowing, and with breathing. When you use your diaphragm muscles too much or too long, it gets weak and breathing becomes very labored. If it keeps up, your diaphragm will stop working, ie. you suffocate to death from the inside out. This is when ventilators are used and plasmapheresis comes in due to crisis. But sometimes they don't work and sometimes it's not soon enough. Sorry to be so blunt, but then again I'm not sorry because I'm just telling the truth and people need to know it. I still don't think people realize the seriousness of this disease.
So after the appointment yesterday and all day today I am laying down. I don't lay flat during the day because that makes it harder to breathe too. But I lay with my legs up and back resting on pillows. If my back is not fully supported (meaning not doing the work on its own), like yesterday in a chair at a doctor's office, it goes weak, quickly. Now I have no choice but to do nothing and lay here. I have a choice- I could do more- but I almost guarantee I'll be in the hospital if I do. I have aquatic therapy tomorrow and I hope I regain enough to be able to go.
This is one very big reason why many people with MG, especially MG that has not been controlled due to medication sensitivies/side effects, etc, cannot work. We look fine. We are fine... for a few minutes to maybe a couple hours. Then at any point in time from many different factors- talking, walking, standing, sitting, smiling, typing, reading, being stressed, heat, medication, or maybe nothing at all- our bodies take a turn for the worse very quickly and sometimes very severely. And "recovery time" can take days or longer. This is why we HAVE to take it easy and be pro-active rather than re-active in our disease. Being re-active could be what determines life vs. death.
When you're sitting at work complaining you want the day over with, when you're on a phone call for hours with something that won't get settled, when you're walking or running to exercise, when you're chewing your food without thinking twice about it, when you're driving, when you're doing anything... today I ask you be mindful of what it is you are doing and appreciate that moment. Appreciate and value that you CAN do those things. You have the ability to do it even if you don't want to. And doing those things for you isn't a matter of life or death. You are blessed. Remember that. You are blessed. And I am too, but I have to live my life a little differently.
Thanks for reading.
Second, to get to what that title means.
Yesterday, I had a doctor's appointment at 12:00. I got there early as I usually do. I handed in my paperwork that I filled out at home (they knew I was filling it out at home) then I waited. At 12:15 the nurse took me in, so I was already waiting about a half hour but that's to be expected at the doctor. She briefly went over a few things, took my blood pressure, then in her words "I'll have the doctor come right in." RIGHT in. Well, "right in" meant an hour later, 1.5 hours later if you take into account my appointment was at 12 but he didn't come in til 1:30. No apology, explanation, nothing. I understand sometimes things happen, but here's the thing. When I was in the waiting room I heard the receptionist say something to my nurse about 1:30 and at that time the nurse took in a different patient before me even though I arrived first. My thought is they knew I wouldn't see the doctor til 1:30. Why on earth would you give me an appointment time of 12:00 then? And if something came up, why not make me aware??
So anyways, once the doctor finally came in he spent about an hour and a half with me. He was very thorough which was good. BUT I started fading out before he even got in the room and especially once we started talking. And then after my visit with him, the nurse came back in and went over some stuff with me. Total time in the office was 4 hours! To any healthy person, you'd be thinking geeze that's a long appointment or that's ridiculous or I won't go back there... something like that. But to me, it's different. I brought magazines, I can hang out and do nothing and be fine with it. What I'm not fine with is my body not being able to tolerate that. "Just sitting" wears out my muscles. "Just talking" wears out my muscles. "Just being alert" exhausts me.
So getting to the title of my post.... when you have MG and your back/abdomen/anything surrounding the diaphragm or the diaphragm muscles get tired... that is putting you at risk of MG crisis which is basically suffocating from the inside out. With MG the more you use a muscle the weaker it gets and less it works until it is pretty much paralyzed for the time being. That doesn't just happen with arms and legs. That happens with face, with swallowing, and with breathing. When you use your diaphragm muscles too much or too long, it gets weak and breathing becomes very labored. If it keeps up, your diaphragm will stop working, ie. you suffocate to death from the inside out. This is when ventilators are used and plasmapheresis comes in due to crisis. But sometimes they don't work and sometimes it's not soon enough. Sorry to be so blunt, but then again I'm not sorry because I'm just telling the truth and people need to know it. I still don't think people realize the seriousness of this disease.
So after the appointment yesterday and all day today I am laying down. I don't lay flat during the day because that makes it harder to breathe too. But I lay with my legs up and back resting on pillows. If my back is not fully supported (meaning not doing the work on its own), like yesterday in a chair at a doctor's office, it goes weak, quickly. Now I have no choice but to do nothing and lay here. I have a choice- I could do more- but I almost guarantee I'll be in the hospital if I do. I have aquatic therapy tomorrow and I hope I regain enough to be able to go.
This is one very big reason why many people with MG, especially MG that has not been controlled due to medication sensitivies/side effects, etc, cannot work. We look fine. We are fine... for a few minutes to maybe a couple hours. Then at any point in time from many different factors- talking, walking, standing, sitting, smiling, typing, reading, being stressed, heat, medication, or maybe nothing at all- our bodies take a turn for the worse very quickly and sometimes very severely. And "recovery time" can take days or longer. This is why we HAVE to take it easy and be pro-active rather than re-active in our disease. Being re-active could be what determines life vs. death.
When you're sitting at work complaining you want the day over with, when you're on a phone call for hours with something that won't get settled, when you're walking or running to exercise, when you're chewing your food without thinking twice about it, when you're driving, when you're doing anything... today I ask you be mindful of what it is you are doing and appreciate that moment. Appreciate and value that you CAN do those things. You have the ability to do it even if you don't want to. And doing those things for you isn't a matter of life or death. You are blessed. Remember that. You are blessed. And I am too, but I have to live my life a little differently.
Thanks for reading.
Monday, October 7, 2013
Extremely HUGE news
That news is... I've found a direct correlation between the strength in the title of my blogs to how many read them. hahaha So, read on my friends, read on...
I do have some news though. I recently completed a 14 day stretch of having somewhere to be every other day. That is pretty huge honestly. It would have been 18 days but my body declined and I needed break towards the beginning. Either way, I made it!!
What does this lead me to talk about? I have so much to talk about but I have to pick a topic and go with it. You know, I very frequently in my head come up with an entire blog post. In my brain I rattle off this and that and it sounds SO good. Usually this is right as I'm falling asleep or right as I'm waking up and by the time I get to my computer to type it out, BRAIN FOG! Perfect timing, brain, perfect timing.
Anyways, I keep coming back to this topic. You know how sometimes things in life keep repeating themselves until you figure it out, until you solve it, until you fix the mistake, until you overcome it. That's kind of how I feel about this, but rather that I get my point across to those who do not have MG or POTS.
It's wearing on me how I always hear either directly or indirectly "are you better?" Chronic. Not acute. Chronic. Ongoing. Lasting. Long time. Forever. Doesn't go away. Chronic. I do understand most people mean well and are only saying that hoping that I am. But look at it this way. Do people come up to you and say "did you get a disease yet??" No. That's weird. The other deceiving thing is my oh so good looks HAHA just kidding. But really, if I haven't seen someone in a while they see me and immediately are extremely shocked by how "good" I look, how "healthy" I look. Guess what. This ties into the beginning of my post. Don't judge a book by it's cover. Something can look horrible on the outside and be good on the inside, or look good on the outside and be horrible on the inside. Deceit. I thank God that I do look "good" and not "sickly" but my insides do not match my outsides.
Ok now that we got that out of the way. Unless I go into remission or medication starts working for me, I'm not going to "get better." I have good days and bad days, good moments and bad moments. That is what these illnesses do. They do not gradually improve over time. If I do improve it will most likely happen almost instantly. It will most likely be I wake up and I'm in remission, or we figure out a medication I can tolerate and it makes my symptoms lessen. And guess what, if that happens, you all will most definitely know it. And then I'll go for a run to celebrate.
Until then, it progresses, unfortunately. So where I am now physically is worse than I was before surgery. When I first got sick it was pretty slight with the symptoms compared to this. I was still able to occasionally on a "good" day go for a walk or play basketball or tennis for a short while. I was able to clean the whole house, cook/bake, drive myself. Well it's progressed to a point that most of that has been taken away from me. Before surgery I was at a pretty bad point physically but not as bad as now. Yet I say it with a smile on my face. That's one thing I do like. When people empathize with me in all that I'm going through but add in "but look at you, you have a smile on your face still." That makes me feel good. Thank you.
Gosh this post is already a mish mosh.
New topic. Love life. I mean come on now. Really love it. Love the life YOU are given. Love the life you are making. You are creating. "Love the life you live until you live the life you love." A very special someone once said that to me. Who knew, years later I'd be the one declaring it to all of you. People run through life like it's a race. It's not. And if it is, I'd like to be the last to finish. So many pass all that is by. Most don't notice beauty any more. True beauty from within. Most don't notice the miracle of life. Most don't notice the value in people and not things. Most don't notice how being so connected is making us disconnected. Most don't notice the hurt we cause and the hurt we tolerate. Most don't notice the EXTREME lack of love. It all comes back to love. "Love makes the world go round." I believe it.
"Can't we all just get along?!?!"
That is all. Thanks for reading. Now go out there and show that love I know you've got in you!
Tuesday, October 1, 2013
Shifting Gears
So many things to talk about...
First off, WOW, thank you to all my readers! I have now passed 10,000 views! That is AMAZING! Please keep reading and passing it on to promote awareness of both MG and POTS. The headings above speak specifically on MG and the "Part 1" "Part 2" and "Part 3" listed under August speak on POTS.
Sunday was the MG Walk Fundraiser. God blessed us with a beautiful day in weather and in strength. That morning and while driving there, I wasn't feeling very good. Sensory overload was hitting me, stomach didn't feel that great, breathing was bad and muscle weakness about average. But our team's name was "Mission Remission" and it seemed as the walk carried on I was walking (or wheel chair riding) closer towards that goal of remission. I walked a small portion of it, but what shocked me more so was my amount of energy- how talkative/energetic I was. I met up with my MG friend and her family which made up our team, and ran into so many other MGers and/or their families that I know. I realized after the fact that I was talking there like I used to before getting sick! Healthy people don't realize how much effort/energy talking is especially to someone whose muscles including diaphram and voice are affected. It was SO great to see all my MG friends and be surrounded by such support and courage.
Our team came in 2nd place for fundraising! We had about 10 people on our team and the first place team had 30! So 2nd is AWESOME! I, as an individual, came in 4th place which again is AWESOME because there were more than a hundred people and this was my first time fundraising. And lastly, I came in 2nd individually for bringing in the most donations within the last week. But I am not taking any of the credit. I am saying this because I am thanking all of YOU for making it happen! THANK YOU!!! This cause obviously means so very much to me and finding a cure, or even improved treatment, and spreading awareness so us MGers are no longer written off as "just anxiety" would be a dream come true. I so very much appreciate each and every donation. Thank you!
That was only 2 days ago, but since then I feel different. I feel better. No not pre-MG better, but better. Today I had an appointment and my mom and I planned to stop at 1 or 2 stores after quickly. Somehow that led to 3 stores plus Jamba Juice plus the video rental store plus the grocery store plus the farm stand. I was in the wheel chair for most of it but still that is a BIG day for me. And yet, here I am typing away, happy as a puppy being adopted (yes that's a hint we need to get a puppy mom and dad). When we were almost home I mentioned how it seems like I'm lasting longer these past couple days. My mom said she didn't want to say anything until I noticed, but she noticed that too. Awesome! I was hoping that Mission Remission was coming into full effect but then reminded that it's not that time yet when my legs stopped working. It's ok though. It's ok.
Now, this isn't happening on its own. At my last neurologist visit, he asked me to up my MG meds. I was concerned because I get side effects when I do that but I told him I would try again. The two doctor visits I had this past week weren't so great and really made me feel defeated, but I'm going to hold off on talking about that because I'm feeling too upbeat for something so negative right now. Anyways, I held off on really upping the meds until the day of the walk because it was my ultimate goal to make it to that walk LOL (stupid little things can land me in the hospital for weeks). Well I made it and then I upped the meds, and ever since then I'm feeling better and lasting longer. Thank you Jesus!
Quickly without going into detail, the reason my doctor wanted to up the meds not only because my symptoms aren't under control, but because he really thought everything was mainly POTS not MG. He said if we up the meds and I improve, there's good reason to believe the neuro muscular symptoms are in fact MG (the rest is still POTS). So now I have to report back. I had a gut feeling all along my MG wasn't as good as he thought it was, but I wanted to believe he was right. Oh well. So NOW there's a chance immune suppressants will come into play. My breathing tests still showed MG test at 20/30%- REALLY bad, and my pulmonologist said nothing but MG can really explain that one. So there you go. MG and POTS both affecting me, but I'm going to take them both down, you just wait and see.
So with all that said, today starts Dysautonomia Awareness Month. POTS is a form of dysautonomia. So I'm going to try to speak more about POTS/Dysautonomia this month, and less about MG. We'll see how that goes. For now I found this video that I think does a good job of showing a bit how we POTSies (that's what we're called) live our lives. I like it. It's short and somewhat informative, so turn on your volume, take a few minutes to watch it and learn. We need awareness. Next time you see someone park in a handicap spot and then walk into a store and you are thinking to yourself they don't need that spot, keep in mind that how we look on the outside does not match what our bodies are doing to us on the inside. http://www.youtube.com/watch?v=9iRwgvh9L0s
Happy October, Happy Fall, Happy Dysautonomia Awareness Month
Happy Heather :)
First off, WOW, thank you to all my readers! I have now passed 10,000 views! That is AMAZING! Please keep reading and passing it on to promote awareness of both MG and POTS. The headings above speak specifically on MG and the "Part 1" "Part 2" and "Part 3" listed under August speak on POTS.
Sunday was the MG Walk Fundraiser. God blessed us with a beautiful day in weather and in strength. That morning and while driving there, I wasn't feeling very good. Sensory overload was hitting me, stomach didn't feel that great, breathing was bad and muscle weakness about average. But our team's name was "Mission Remission" and it seemed as the walk carried on I was walking (or wheel chair riding) closer towards that goal of remission. I walked a small portion of it, but what shocked me more so was my amount of energy- how talkative/energetic I was. I met up with my MG friend and her family which made up our team, and ran into so many other MGers and/or their families that I know. I realized after the fact that I was talking there like I used to before getting sick! Healthy people don't realize how much effort/energy talking is especially to someone whose muscles including diaphram and voice are affected. It was SO great to see all my MG friends and be surrounded by such support and courage.
Our team came in 2nd place for fundraising! We had about 10 people on our team and the first place team had 30! So 2nd is AWESOME! I, as an individual, came in 4th place which again is AWESOME because there were more than a hundred people and this was my first time fundraising. And lastly, I came in 2nd individually for bringing in the most donations within the last week. But I am not taking any of the credit. I am saying this because I am thanking all of YOU for making it happen! THANK YOU!!! This cause obviously means so very much to me and finding a cure, or even improved treatment, and spreading awareness so us MGers are no longer written off as "just anxiety" would be a dream come true. I so very much appreciate each and every donation. Thank you!
That was only 2 days ago, but since then I feel different. I feel better. No not pre-MG better, but better. Today I had an appointment and my mom and I planned to stop at 1 or 2 stores after quickly. Somehow that led to 3 stores plus Jamba Juice plus the video rental store plus the grocery store plus the farm stand. I was in the wheel chair for most of it but still that is a BIG day for me. And yet, here I am typing away, happy as a puppy being adopted (yes that's a hint we need to get a puppy mom and dad). When we were almost home I mentioned how it seems like I'm lasting longer these past couple days. My mom said she didn't want to say anything until I noticed, but she noticed that too. Awesome! I was hoping that Mission Remission was coming into full effect but then reminded that it's not that time yet when my legs stopped working. It's ok though. It's ok.
Now, this isn't happening on its own. At my last neurologist visit, he asked me to up my MG meds. I was concerned because I get side effects when I do that but I told him I would try again. The two doctor visits I had this past week weren't so great and really made me feel defeated, but I'm going to hold off on talking about that because I'm feeling too upbeat for something so negative right now. Anyways, I held off on really upping the meds until the day of the walk because it was my ultimate goal to make it to that walk LOL (stupid little things can land me in the hospital for weeks). Well I made it and then I upped the meds, and ever since then I'm feeling better and lasting longer. Thank you Jesus!
Quickly without going into detail, the reason my doctor wanted to up the meds not only because my symptoms aren't under control, but because he really thought everything was mainly POTS not MG. He said if we up the meds and I improve, there's good reason to believe the neuro muscular symptoms are in fact MG (the rest is still POTS). So now I have to report back. I had a gut feeling all along my MG wasn't as good as he thought it was, but I wanted to believe he was right. Oh well. So NOW there's a chance immune suppressants will come into play. My breathing tests still showed MG test at 20/30%- REALLY bad, and my pulmonologist said nothing but MG can really explain that one. So there you go. MG and POTS both affecting me, but I'm going to take them both down, you just wait and see.
So with all that said, today starts Dysautonomia Awareness Month. POTS is a form of dysautonomia. So I'm going to try to speak more about POTS/Dysautonomia this month, and less about MG. We'll see how that goes. For now I found this video that I think does a good job of showing a bit how we POTSies (that's what we're called) live our lives. I like it. It's short and somewhat informative, so turn on your volume, take a few minutes to watch it and learn. We need awareness. Next time you see someone park in a handicap spot and then walk into a store and you are thinking to yourself they don't need that spot, keep in mind that how we look on the outside does not match what our bodies are doing to us on the inside. http://www.youtube.com/watch?v=9iRwgvh9L0s
Happy October, Happy Fall, Happy Dysautonomia Awareness Month
Happy Heather :)
Subscribe to:
Comments (Atom)