Life is so beautiful! I'm sitting at the table, the porch (some call it a patio) door is wide open, there is cool morning air today, and my coffee is tasty! I'm avoiding chores by stalking you on Facebook right now. I'm vicariously taking part in your races, your parades, your frustrations, your vacations, your deep thoughts, your family milestones. Is that scary? Ah, that's what social media is all about. You post it, tag it, share it, like it, and you're permitting your friends to view a bit of your world. Thank you! Thank you for being a friend, in real life or in the social media/arms length away world. Thank you for sharing!
This morning, I was checking out the donations made to the MS150 ride that my husband, sister, and 2 very dear friends are training for, which will take place next month. The bike ride is called the "BP MS150" because they will ride over 150 miles from Houston to Austin, in 2 days, to help raise awareness and monies for the fight against Multiple Sclerosis. What an amazing adventure! What an awesome journey, both physically and emotionally! What a crazy thing to do!!! I don't care to drive 150 miles, let a lone pedal that on a bike?! My guess is that they don't either, but this is exactly what they will be doing. Why? Because they care. Because they want to share their world with others. Because they choose to help make a difference. They are riding because they can! What a motivation!!
Today the sun is shining, the birds are chirping, the air is cool, the coffee taste good, and the heart is full. Today is a day that I choose to look up at the world, rather than at my feet, while I walk. Today, I release fears that sit quietly inside my head, as they are not mine to control. Today, I choose to smile rather than sit emotionless. Today, I remember to thank God for the air in my lungs. Today, I choose to share and celebrate life, because I can. Thanks for sharing yours too!
Saturday, March 17, 2012
Tuesday, March 13, 2012
Buh-Bye
Last Wednesday, I parted ways with a dear acquaintance. We'd known each other for quite sometime, and had been through 'some stuff' together. However, like many relationships, it was time for this one to end. Each party has to support the other, and where I was well supported, in turn, I did not reciprocate and was neglectful.
I really did want to maintain what we had, but failed to truly do my part. Yes, I could have done more and probably should have, yet knowing our deep connection was soon to be broken, the distance I created was more intentional, than not. Likely it was denial, and I was protecting myself from the anxiety about going our separate ways.
Catheter #5...I thank you for being such a key part of my life, much as those before you. In my mind, you and I parted on very good terms, and it truly is with mixed emotion, that I say "buh-bye"
Yep, alls still good here! Its been 3 months since the last pheresis. Amen!
I really did want to maintain what we had, but failed to truly do my part. Yes, I could have done more and probably should have, yet knowing our deep connection was soon to be broken, the distance I created was more intentional, than not. Likely it was denial, and I was protecting myself from the anxiety about going our separate ways.
Catheter #5...I thank you for being such a key part of my life, much as those before you. In my mind, you and I parted on very good terms, and it truly is with mixed emotion, that I say "buh-bye"
Yep, alls still good here! Its been 3 months since the last pheresis. Amen!
Tuesday, February 21, 2012
Straight Talk - Prednisone
Today, I could feel my face!! For the first time in a while, I woke up able to feel my face again. Not in the sense that you put your hand to your face, and it feels smooth, or bumpy, or cold, or smiley. Feel my face in the sense that it did not feel numb-ish from the inside. I could smile and feel my cheeks and the muscles that help make that happen. It didn't feel like a Dentist loaded me up with that lovely 'stuff' that dulls the hurt. I could feel my face! Now, as I type, its late in the day, and the sensation has diminished. Baby steps!
We continue to slowly decrease the Prednisone and with that, I suppose the side effects will slowly go away too. All I've heard people say is that the side effects from this medication (long term use), is 'just horrible'. Then I ask, 'what does that mean' and often do not get a clear answer. So, I'm here to share.
Your joints start to hurt. I brace myself at times, when sitting. No, you re not getting old and falling apart..well..not exactly. You're not expediting the aging process, but your body *is* expediting the joint degradation. Gotta keep exercising!
My appetite is great..and so is my waistline. NO, that's not a cry for help or a woe is me. Its more like a 'Whoooah' for me!
My vision gets blurry. Aside from any allergens that may be blowing through the area, the vision field gets blurry at times and you have to stop and blink, blink, blink or I even try the eye drops. Sometimes it helps, but most of the time, ya just deal with the change.
Your skin gets a bit aggravated too. What does that mean? I mean, there are little bumps all over that you would liken to dry skin or maybe hives or shingles...it looks that way. I have a lovely break out on my face, and it acts nothing like the silly 'zits' we all grew up with. They're just annoying and ugly.
Ok, that's my quick tutorial on the side effects of Prednisone. Those that I have experienced! Don't get me wrong, these are necessary hurdles and very minimal, when compared to the alternatives patients are often faced with.
Today marks 10-weeks with out pheresis, 11-weeks since the last infusion, let's call it 12-weeks since the symptoms were present, and this morning I could feel my face!
We continue to slowly decrease the Prednisone and with that, I suppose the side effects will slowly go away too. All I've heard people say is that the side effects from this medication (long term use), is 'just horrible'. Then I ask, 'what does that mean' and often do not get a clear answer. So, I'm here to share.
Your joints start to hurt. I brace myself at times, when sitting. No, you re not getting old and falling apart..well..not exactly. You're not expediting the aging process, but your body *is* expediting the joint degradation. Gotta keep exercising!
My appetite is great..and so is my waistline. NO, that's not a cry for help or a woe is me. Its more like a 'Whoooah' for me!
My vision gets blurry. Aside from any allergens that may be blowing through the area, the vision field gets blurry at times and you have to stop and blink, blink, blink or I even try the eye drops. Sometimes it helps, but most of the time, ya just deal with the change.
Your skin gets a bit aggravated too. What does that mean? I mean, there are little bumps all over that you would liken to dry skin or maybe hives or shingles...it looks that way. I have a lovely break out on my face, and it acts nothing like the silly 'zits' we all grew up with. They're just annoying and ugly.
Ok, that's my quick tutorial on the side effects of Prednisone. Those that I have experienced! Don't get me wrong, these are necessary hurdles and very minimal, when compared to the alternatives patients are often faced with.
Today marks 10-weeks with out pheresis, 11-weeks since the last infusion, let's call it 12-weeks since the symptoms were present, and this morning I could feel my face!
Sunday, February 12, 2012
Its 8.5 for Team Higgins
It would seem that I need to begin using the voice memo recorder on my phone, as I have these 'brilliant' ideas during the week, that I intend to share with you, fully trusting myself that I will not forget the topic this time , and when time is allotted to sit down and chat with you, well, I've forgotten of course.
This has been a good week. It is now 8.5 weeks since the last pheresis treatment, and 9.5 weeks since the last infusion, and I'll be bold and say 10.5 weeks since the last symptoms were noticeable. Good numbers! We continue to decrease the Prednisone and look forward to that wrapping up in a couple of months. So all in all, I'm doing great!
Comparing where we have been, and where we are now, I am a *very* happy camper. It feels like we've reach a plateau. What a climb, and what do we do now? I promise it wont be sit still and wait. No more waiting to see what MG or MS will serve up next. Our MG support group is taking part in the MDA's annual fundraising celebration in 2 weeks (Muscle Walk), Lee is training to ride in the MS 150 coming up in April (150 miles, Houston to Austin, 2-days!), and just after this, we'll travel to Las Vegas to take part in the annual Myasthenia Gravis Foundation of America conference. We keep busy!
We rest too, and we give thanks for the blessings we've received through all of this poo. The list o blessings is long, and ever growing. For example, I'm blessed to have just watched that big ole sun rise again, and that 8.5 is more than just my shoe size!
This has been a good week. It is now 8.5 weeks since the last pheresis treatment, and 9.5 weeks since the last infusion, and I'll be bold and say 10.5 weeks since the last symptoms were noticeable. Good numbers! We continue to decrease the Prednisone and look forward to that wrapping up in a couple of months. So all in all, I'm doing great!
Comparing where we have been, and where we are now, I am a *very* happy camper. It feels like we've reach a plateau. What a climb, and what do we do now? I promise it wont be sit still and wait. No more waiting to see what MG or MS will serve up next. Our MG support group is taking part in the MDA's annual fundraising celebration in 2 weeks (Muscle Walk), Lee is training to ride in the MS 150 coming up in April (150 miles, Houston to Austin, 2-days!), and just after this, we'll travel to Las Vegas to take part in the annual Myasthenia Gravis Foundation of America conference. We keep busy!
We rest too, and we give thanks for the blessings we've received through all of this poo. The list o blessings is long, and ever growing. For example, I'm blessed to have just watched that big ole sun rise again, and that 8.5 is more than just my shoe size!
Sunday, January 29, 2012
Week 7
Yes, it HAS been a while! Happy New Year!!! I really did/do intend on posting more often, but then I simply let time get by me. Honestly, its when I hear from you, that I'm motivated blog a bit.
Life is really, really good! I remain symptom free, and I'm not afraid to say that out loud. Tuesday will be 7 whole weeks, since my last pheresis treatment. Seven!! I've not been this long without a symptom, since the joy-ride began in November of 2008. Wahoooooo.... How long will it last, and what will we do when the symptoms return? We're not 100% sure, but I AM tired of sitting around and waiting on the next something to happen...no ma'am, done with that!
For now, the catheter remains in my chest. We are slowly bringing me off the Prednisone, and this should last for another 10 weeks. At about the same time, we anticipate the benefits from the initial Rituxan therapy to begin wearing off as well. We're keeping #5 around as a back up plan! Ya just never now when you may need a trusty ole tube to be hanging out of your chest. :)
Lee and I are blessed, and we know it! This year has started off very well, and we have lots to do in the new year. God willing, we'll keep MG and MS in the back of the car for our journey trough 2012.
Life is really, really good! I remain symptom free, and I'm not afraid to say that out loud. Tuesday will be 7 whole weeks, since my last pheresis treatment. Seven!! I've not been this long without a symptom, since the joy-ride began in November of 2008. Wahoooooo.... How long will it last, and what will we do when the symptoms return? We're not 100% sure, but I AM tired of sitting around and waiting on the next something to happen...no ma'am, done with that!
For now, the catheter remains in my chest. We are slowly bringing me off the Prednisone, and this should last for another 10 weeks. At about the same time, we anticipate the benefits from the initial Rituxan therapy to begin wearing off as well. We're keeping #5 around as a back up plan! Ya just never now when you may need a trusty ole tube to be hanging out of your chest. :)
Lee and I are blessed, and we know it! This year has started off very well, and we have lots to do in the new year. God willing, we'll keep MG and MS in the back of the car for our journey trough 2012.
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