I learned a lot in 2013. More than I could have anticipated and not just about my health! Here are some things I learned:
1) I have a LOT to be thankful for. At the top of my list is my husband. No doubt I have completely tested his patience in 2013, but these steroids just may be the straw that breaks the camel's back! AND I'M NOT DONE YET!! I'll be taking them until June, for sure!! I'm annoyed with myself - I do not envy his position. My health, yet another thing we often take for granted, is another thing I have to be thankful for. You don't realize how valuable things are until you are without them. If you don't have your health, you pretty much don't have anything. My family. Every single one has been nothing but supportive and proactive in helping me get better.
2) How strong my body is. Despite complete loss of body fat, I lost a TON of muscle mass and my body was pushed to the point of failure. I was sure that so much damage had been done that many things would not recover. I was wrong. I am seeing recovery daily (slowly but surely) and am constantly amazed at the things this little body is capable of. 1 Corinthians 10:13 is often misrepresented. It's about temptation and not being tempted beyond what you are able to withstand and not about your body's physical strength...what you can handle physically/emotionally/mentally...but if it WAS about what my body could handle and what God "gives me", I'd say that God must think I'm some kind of badass.3) Who my friends really are. We often take this for granted but when you find yourself in a time of need/suffering/pain/crisis, the people who truly care about you step up and those who don't fade into the shadows. It is difficult to come to grips with such things but this is a reality of life. Time, distance, life...these things and more change our relationships and who we are. I know that I have changed but in the time I have left, I intend on making the best of it. I appreciate all of you who have checked in on me, helped me, encouraged me and loved me during the time I needed it the most. There are no word to truly describe how much it means to me.
4) Nurses. Yes, I'm happy to have doctors but the nurses do a LOT of the work and they are the ones you deal with on the regular when it comes to health complications. Nurses can also make or break your experience. Be nice to your nurses, they're the ones that are going to help you!!
5) The worst thing you have experienced is the worst thing you have experienced. I know that sounds funny but it's the truth. We can only go off of what we've experienced. It doesn't mean we can't learn from what other people experience but it doesn't have quite the potency or full effect until we experience it ourselves and this covers SO MANY aspects of life.
6) That people make a lot of excuses NOT to do things. I'm not going to be one of those people. I've done a lot of things in my 31 years and I'm not done yet. I'm not going to rant about this but I am going to say that IF I CAN DO IT, YOU CAN DO IT.
Okay, so I've learned a lot of other things but let's move on to a NEW YEAR!!
We started 2014 with a plan! Not only would I be a healthier version of myself than I had been in 2013, but we were going to DO things. I missed out on so many events in 2013 due to my "health" or lack there of, that I want to go places and see people. We have been told there will be in the upwards of 10 weddings this year and three 1st Birthdays as well as a couple new babies coming! Did I mention that we missed our favorite trip to Kauai last year and we'd really like to go?? That is...as long as it doesn't interfere with IVIG.
In the case of my antibody problem/auto-immune disorder, IVIG is a distraction to the system - the idea is that by putting an over-whelming amount of new antibodies into my system, my body will stop focusing on producing the very specific AChR antibody and over time, the amount in my system will decrease. I have 12 IVIG treatments scheduled for this year before my antibody level is tested again. I do miss plasmapharesis as it was so effective so quickly but I cannot complain since I feel SO. MUCH. BETTER.
**Plasmapharesis completely removes all of your immunity. The problem is that they can't just remove ONE antibody, they have to take them all and steroids breaks down immunity so with that combination, I was HIGHLY DISCOURAGED from being around: sick people (duh!), animals and small children. Really? The answer is yes to all 3. This kept me home and away from many of you - not your fault, just a consequence of my situation.**
This year, oh this year, I was "approved" to do whatever I wanted to! Thank you IVIG! I will be posting pictures of my "progress" along with the steroid dosage for your reference:
January 6 IVIG (30mg prednisone)
1) I have a LOT to be thankful for. At the top of my list is my husband. No doubt I have completely tested his patience in 2013, but these steroids just may be the straw that breaks the camel's back! AND I'M NOT DONE YET!! I'll be taking them until June, for sure!! I'm annoyed with myself - I do not envy his position. My health, yet another thing we often take for granted, is another thing I have to be thankful for. You don't realize how valuable things are until you are without them. If you don't have your health, you pretty much don't have anything. My family. Every single one has been nothing but supportive and proactive in helping me get better.
2) How strong my body is. Despite complete loss of body fat, I lost a TON of muscle mass and my body was pushed to the point of failure. I was sure that so much damage had been done that many things would not recover. I was wrong. I am seeing recovery daily (slowly but surely) and am constantly amazed at the things this little body is capable of. 1 Corinthians 10:13 is often misrepresented. It's about temptation and not being tempted beyond what you are able to withstand and not about your body's physical strength...what you can handle physically/emotionally/mentally...but if it WAS about what my body could handle and what God "gives me", I'd say that God must think I'm some kind of badass.3) Who my friends really are. We often take this for granted but when you find yourself in a time of need/suffering/pain/crisis, the people who truly care about you step up and those who don't fade into the shadows. It is difficult to come to grips with such things but this is a reality of life. Time, distance, life...these things and more change our relationships and who we are. I know that I have changed but in the time I have left, I intend on making the best of it. I appreciate all of you who have checked in on me, helped me, encouraged me and loved me during the time I needed it the most. There are no word to truly describe how much it means to me.
4) Nurses. Yes, I'm happy to have doctors but the nurses do a LOT of the work and they are the ones you deal with on the regular when it comes to health complications. Nurses can also make or break your experience. Be nice to your nurses, they're the ones that are going to help you!!
5) The worst thing you have experienced is the worst thing you have experienced. I know that sounds funny but it's the truth. We can only go off of what we've experienced. It doesn't mean we can't learn from what other people experience but it doesn't have quite the potency or full effect until we experience it ourselves and this covers SO MANY aspects of life.
6) That people make a lot of excuses NOT to do things. I'm not going to be one of those people. I've done a lot of things in my 31 years and I'm not done yet. I'm not going to rant about this but I am going to say that IF I CAN DO IT, YOU CAN DO IT.
Okay, so I've learned a lot of other things but let's move on to a NEW YEAR!!
We started 2014 with a plan! Not only would I be a healthier version of myself than I had been in 2013, but we were going to DO things. I missed out on so many events in 2013 due to my "health" or lack there of, that I want to go places and see people. We have been told there will be in the upwards of 10 weddings this year and three 1st Birthdays as well as a couple new babies coming! Did I mention that we missed our favorite trip to Kauai last year and we'd really like to go?? That is...as long as it doesn't interfere with IVIG.
In the case of my antibody problem/auto-immune disorder, IVIG is a distraction to the system - the idea is that by putting an over-whelming amount of new antibodies into my system, my body will stop focusing on producing the very specific AChR antibody and over time, the amount in my system will decrease. I have 12 IVIG treatments scheduled for this year before my antibody level is tested again. I do miss plasmapharesis as it was so effective so quickly but I cannot complain since I feel SO. MUCH. BETTER.
**Plasmapharesis completely removes all of your immunity. The problem is that they can't just remove ONE antibody, they have to take them all and steroids breaks down immunity so with that combination, I was HIGHLY DISCOURAGED from being around: sick people (duh!), animals and small children. Really? The answer is yes to all 3. This kept me home and away from many of you - not your fault, just a consequence of my situation.**
This year, oh this year, I was "approved" to do whatever I wanted to! Thank you IVIG! I will be posting pictures of my "progress" along with the steroid dosage for your reference:
January 6 IVIG (30mg prednisone)
BG Post-IVIG: 141
January 22 IVIG (20mg prednisone)
BG Pre-IVIG: 175
BG Post-IVIG: 138
T1D: I asked my endocrinologist and every nurse at the infusion center if IVIG would have an affect on my BG. ALL SAID NO. What do I notice hanging below my IV? A cute little bag that says "5% Dextrose". Know about it.
