“Into each day, put in about one teaspoonful of good spirits, a dash of fun, a pinch of folly, a sprinkling of play, and a heaping cupful of good humor! ”
What great advice, and so close to how I try to live my life each day anyway! I have often said that I will never lose my sense of humor about all this. If I do- I'm done! It would be a spiral downward that would be difficult to return from I think. All the crazy medical 'side shows' that I've endured the past 2 years- I really have had to keep my sense of humor and because I have, I can laugh at the absurdity of the medical mishaps that happened and be ready to face the next one with the same anticipation one has when they are waiting for the next perfect joke to emit from a comic's mouth so they can laugh. And laughter really is at times the best medicine. I don't always belly laugh- in fact its not the first reaction that I have actually which I think confuses and bothers Ajay (my husband). But the way my mind is splattered in a hundred directions thanks to the Lyme (think 50 random thoughts going through your mind almost at once while you are trying to focus on just one!) it makes it a little hard to respond with a jolly old belly laugh- but I enjoy them when they do occur. But I often have an internal laugh that I guess only I can hear and enjoy. I don't do it on purpose of course- it's just another casualty of the damage and effect that Lyme disease has had on my brain. Some days, like today, I am able to think pretty clearly/coherently to even write a blog like this. But I can still easily forget what I wrote just 2 minutes ago, and tend to ramble on aimlessly- like a lost puppy!
Anyway, back to inspirational thoughts for the day, I have one more to share. This comes from my daily inspirational thoughts book, and this one emulates how I feel about my situation and ALL our lives as a whole!
I have discovered that a joyful countenance has nothing to do with ones' age or one's occupation (or lack of it) or one's geography or education or marital status or good looks or circumstances. JOY IS A CHOICE. It is a matter of ATTITUDE that stems from one's confidence in GOD- that HE is at work, that HE is in full control, that HE is in the midst of whatever has happened, is happening, and will happen.
I agree and admit that this is what helps to get me through each day- whether it is a blue sky day, a partial blue sky day, or a RED TOXIC day! I have full confidence and FAITH that God- or really the Holy Trinity as a whole- is in control and with me as I go through this cross I bear. I don't know why- but trust there is a reason. But having FAITH and not questioning 'why me?' is so freeing spiritually. Its really hard to describe. But its an inner peace, despite the ravages and pain my body endures, that I have and wish that everyone could experience. And I do believe you can, if you BELIEVE, if you have FAITH and TRUST in the Trinity.
What is the meaning of life? A question that some spend their entire lives trying to answer and live in anger, angst and depression if they haven't yet found the answer that was right in front of them all along. WE ARE SPIRITUAL PEOPLE. And when we find that the true meaning of life is to love God with all our hearts and to love one another as we love ourselves- life will suddenly have real meaning and purpose. It is after we discover this and believe it in our hearts that we can then find meaning and happiness in other beautiful parts of life like marriage, service to others, having a job that provides for your family and has a sense of purpose, having FUN, spending time with family and friends.....these things are all parts of living a wonderful life. But first you must START with the MEANING of life- and then the rest flows out from there. We are human, we don't always get it right. Lord knows I make mistakes- daily. But that doesn't mean we stop trying! And I have found by living it that I get the most reward and happiness when I am serving others. It can be as simple as sending someone flowers to brighten their day or taking them to a 'girls day' where they indulge in some relaxation and rejuvenation which we ALL need at some point OR to give charitably- whether its with your time, talent or treasure. And sometimes, you have to give until it hurts- and then give a little more. And you will find that it always comes back to you. Don't give generously anticipating that windfall in return- that misses the point. But trust that as you are generous with your time, talent and treasure- it will be returned to you in SOME WAY- and those are graces from God.
Wouldn't it be great if we all found the Meaning of Life and discovered the power of believing in God, Jesus and the Holy Spirit and the works they do in our lives everyday- if we open our hearts to them.
Maybe try it for a day-see how you like it. But be prepared to become a BELIEVER. Prepare for your life to change- but only for the better!
Thanks for taking the time to read my Blog today. I feel I was inspired by the Holy Spirit to write it. So I trust that there is a reason- and I have faith that those who need to hear it- will.
And beyond that, I hope to document my journey for myself as well as my children so that this experience strengthens their faith and makes them stronger, compassionate people as they grow. Yes this is a trying time for my family- but we see the blessings more than the challenges. And we NEVER lose our sense of humor!!!!
Love and blessings!
Mary
Thursday, February 24, 2011
Wednesday, February 23, 2011
HALFWAY THROUGH WEEK 2 of the Second Month of IV Therapy for Lyme Disease- FYI- MEPRON is DISGUSTING!by Mary A Beck Patil on Wednesday, February 23, 2011 at 1:58am
So I am halfway through week 2 of my 2nd month of Lyme IV treatment- and so far its going much better than week 1 was! Unfortunately I was having seizures after receiving the clindemycin (newly added IV antibiotic)! But by the end of the week, with pre-medication and some other medication changes, we seem to have managed to get the seizure reaction under control. However, I had to add MEPRON- an oral antibiotic/medicine which is basically DISGUSTING. Imagine thick, bright neon yellow PAINT- and then imagine having to drink it WITH peanut butter because it requires something fatty to be taken with it. It really is gross- but like a good little patient, but without a 'spoonful of sugar- the medicine goes down'!
So far this week- no seizures. But my bronchitis has returned with a vengeance- or a cold- or both. Who can tell anymore? While I am a bit tired of the crap in my chest- I am grateful that I don't have a terrible persistent cough that keeps me up at night. Its more like an unpredictable cough that sounds horrible at the time- then back to normal. Go figure.
Overall I am feeling run down and fatigued. But am happy that both are at a manageable level especially since I've lowered/changed my pain meds. I was afraid that I'd have to increase them due to the pain/fatigue I can expect from herxing- but so far they've both been at manageable levels and I am grateful for that. I'd like to believe that I am doing as well as I am so far (not bedridden is the base comparison) BECAUSE of all the prayers and well wishes that are directed at me. I FEEL THEM- its like a protective bubble sometimes. Or I could just be doing well despite the ravage on my body to destroy the lyme bugs along with the co-infections (Babesia and Bartonella). In fact, my holistic doctor (Dr. Linda Potts/Healing Waters now in Frederick) said she picked up a THIRD co-infection with the biofeedback program she uses. I can't remember which one it was now (LYME BRAIN) but it was a little disheartening to hear there was a third one (so that's 4 total) that I am fighting. But not all of what I am doing is WESTERN MEDICINE- I take a lot of holistic/EASTERN MEDICINES as well! And then there's PRAYER and FAITH! Pretty strong companions to both of these medical regimens! So again, I believe that the reason I am faring so well in general so far is the power of prayer. I guess you can believe or not believe. But my new motto has been.....BELIEVE!
So the only other eventful thing that happened was the small seizure I had at Mass this past Sunday. But I was able to manage it without taking meds, and the recovery was pretty quick (Parkinsons Disease like symptoms usually follow a seizure). I think that i had it because being in the church with everyone is just too much stress/anxiety for me. I know that many of the parishioners (wonderful people!) are aware of my condition and I am constantly on the prayer list- and the lyme disease has some quirky conditions that comes with it- including some anxiety, OCD and sleep disorder conditions that I endlessly have to fight- take note of the time this note is being posted as an example. But overall I've managed these pretty well I think- and successfully learned to let a lot of things go. And I've certainly had to learn to say "I can't do that" and "I need help" which was very difficult for me! I was a very type A independent person before this- and its a constant battle to balance my independence and determination to be a part of family's life as much as possible versus my body's desire to just lay in bed all day! EVERYDAY is a battle! So anyway- back to the seizure at church. I just think the stress of being around everyone- many possible watching me knowing my condition- is too much. So I've told Pastor Jaskot (new pastor) not to take it personally but I will be returning to my spot out in the entrance/lobby area! It just works better for me. At least I'm learning and adjusting my lifestyle as needed!
Speaking of Holy Family Catholic Community Parishioners (our church)- they are the BEST! The staff and many of the family members (we are all one big Christian Family!) have been so nurturing and supportive! And I know that many are signing up on the website that Cathy Florimbio lovingly set up for me (with Ajay updating it as needed) to help with meals and rides. Honestly, there's not a lot of things we NEED. What I needed the most was to have a group of women available during the day (especially a few that are nurses) that could help give me my IV treatments and do my sterile dressing change once a week (the same day I get to do a shower! YIPPEE!). It's too much for Ajay to do every MWF- he's got to go to work. And it's a bit too much for me to do to myself really. And impossible for me to do the sterile dressing change. But I have a lovely gaggle of friends who have worked out a schedule and cover each other so there are always 2 here to help. And they help me with little projects/house related things if there are any that need to be done. But mostly they take care of me (pampering without the spa treatments!) and make sure that I get my treatments and help pack my pills for the week etc. Many people want to help- but they are not available during the day- that was the crux of it. So if you are ready and willing to help, and are frustrated to see that there isn't a lot of things to sign up for right now, know that your prayers are still wanted and needed and IF you are free during the day on Tues or Thursdays or afternoons on any day of the week- let me know and perhaps you can just pick a day to come by and spend some time with me or take me out for a little escape. Sometimes I am cooped up here for days! So its nice to get out for a little bit if I am up for it- and not just to get my labs done! As we get my schedule more settled, we will probably list these on the schedule- but for now, just let me know if you are free during the day and would like to get on my 'daytime friend' list!
Okay- I think that's a good update- probably more details than most required. Blame the rambling LYME BRAIN. I know I was long winded before- but now I can't remember what I typed 2 minutes ago- so I tend to ramble and I often have to stop and look back at what I've already read to make sure I haven't already said what I am about to write!
Lastly, many people have been asking about our MISSING CHRISTMAS/NEW YEARS Annual card and update. No- we haven't done one yet, but YES I am still planning on sending out SOMETHING. Perhaps Christmas wishes in July? I want to share my story about my 2 brushes with death (especially the 2nd that was more or less my Christmas miracle thanks to my brother Jimbo on the other side) and what all the boys have been up to- so I hope to still get something out. Just don't quote me on WHEN!
As always, thank you for the prayers and blessings that I am graced with each and everyday from all those who have stepped forward to help us in our time of need. I am so moved by the response- you all inspire me so. I know that I have been generous to many when they were in need- and so I am living proof that the kindness you share will come back to you 100-fold!
Love and blessings,
Mary
So far this week- no seizures. But my bronchitis has returned with a vengeance- or a cold- or both. Who can tell anymore? While I am a bit tired of the crap in my chest- I am grateful that I don't have a terrible persistent cough that keeps me up at night. Its more like an unpredictable cough that sounds horrible at the time- then back to normal. Go figure.
Overall I am feeling run down and fatigued. But am happy that both are at a manageable level especially since I've lowered/changed my pain meds. I was afraid that I'd have to increase them due to the pain/fatigue I can expect from herxing- but so far they've both been at manageable levels and I am grateful for that. I'd like to believe that I am doing as well as I am so far (not bedridden is the base comparison) BECAUSE of all the prayers and well wishes that are directed at me. I FEEL THEM- its like a protective bubble sometimes. Or I could just be doing well despite the ravage on my body to destroy the lyme bugs along with the co-infections (Babesia and Bartonella). In fact, my holistic doctor (Dr. Linda Potts/Healing Waters now in Frederick) said she picked up a THIRD co-infection with the biofeedback program she uses. I can't remember which one it was now (LYME BRAIN) but it was a little disheartening to hear there was a third one (so that's 4 total) that I am fighting. But not all of what I am doing is WESTERN MEDICINE- I take a lot of holistic/EASTERN MEDICINES as well! And then there's PRAYER and FAITH! Pretty strong companions to both of these medical regimens! So again, I believe that the reason I am faring so well in general so far is the power of prayer. I guess you can believe or not believe. But my new motto has been.....BELIEVE!
So the only other eventful thing that happened was the small seizure I had at Mass this past Sunday. But I was able to manage it without taking meds, and the recovery was pretty quick (Parkinsons Disease like symptoms usually follow a seizure). I think that i had it because being in the church with everyone is just too much stress/anxiety for me. I know that many of the parishioners (wonderful people!) are aware of my condition and I am constantly on the prayer list- and the lyme disease has some quirky conditions that comes with it- including some anxiety, OCD and sleep disorder conditions that I endlessly have to fight- take note of the time this note is being posted as an example. But overall I've managed these pretty well I think- and successfully learned to let a lot of things go. And I've certainly had to learn to say "I can't do that" and "I need help" which was very difficult for me! I was a very type A independent person before this- and its a constant battle to balance my independence and determination to be a part of family's life as much as possible versus my body's desire to just lay in bed all day! EVERYDAY is a battle! So anyway- back to the seizure at church. I just think the stress of being around everyone- many possible watching me knowing my condition- is too much. So I've told Pastor Jaskot (new pastor) not to take it personally but I will be returning to my spot out in the entrance/lobby area! It just works better for me. At least I'm learning and adjusting my lifestyle as needed!
Speaking of Holy Family Catholic Community Parishioners (our church)- they are the BEST! The staff and many of the family members (we are all one big Christian Family!) have been so nurturing and supportive! And I know that many are signing up on the website that Cathy Florimbio lovingly set up for me (with Ajay updating it as needed) to help with meals and rides. Honestly, there's not a lot of things we NEED. What I needed the most was to have a group of women available during the day (especially a few that are nurses) that could help give me my IV treatments and do my sterile dressing change once a week (the same day I get to do a shower! YIPPEE!). It's too much for Ajay to do every MWF- he's got to go to work. And it's a bit too much for me to do to myself really. And impossible for me to do the sterile dressing change. But I have a lovely gaggle of friends who have worked out a schedule and cover each other so there are always 2 here to help. And they help me with little projects/house related things if there are any that need to be done. But mostly they take care of me (pampering without the spa treatments!) and make sure that I get my treatments and help pack my pills for the week etc. Many people want to help- but they are not available during the day- that was the crux of it. So if you are ready and willing to help, and are frustrated to see that there isn't a lot of things to sign up for right now, know that your prayers are still wanted and needed and IF you are free during the day on Tues or Thursdays or afternoons on any day of the week- let me know and perhaps you can just pick a day to come by and spend some time with me or take me out for a little escape. Sometimes I am cooped up here for days! So its nice to get out for a little bit if I am up for it- and not just to get my labs done! As we get my schedule more settled, we will probably list these on the schedule- but for now, just let me know if you are free during the day and would like to get on my 'daytime friend' list!
Okay- I think that's a good update- probably more details than most required. Blame the rambling LYME BRAIN. I know I was long winded before- but now I can't remember what I typed 2 minutes ago- so I tend to ramble and I often have to stop and look back at what I've already read to make sure I haven't already said what I am about to write!
Lastly, many people have been asking about our MISSING CHRISTMAS/NEW YEARS Annual card and update. No- we haven't done one yet, but YES I am still planning on sending out SOMETHING. Perhaps Christmas wishes in July? I want to share my story about my 2 brushes with death (especially the 2nd that was more or less my Christmas miracle thanks to my brother Jimbo on the other side) and what all the boys have been up to- so I hope to still get something out. Just don't quote me on WHEN!
As always, thank you for the prayers and blessings that I am graced with each and everyday from all those who have stepped forward to help us in our time of need. I am so moved by the response- you all inspire me so. I know that I have been generous to many when they were in need- and so I am living proof that the kindness you share will come back to you 100-fold!
Love and blessings,
Mary
Wednesday, February 16, 2011
One awesome lady....
For all of us, Mary is the epitome of the word "Mom"....her world is her children and the joy that they bring her. This love envelopes all those around her and their families. I am in awe of her energy and stamina even in the midst of this ordeal. For starters, she organized a belated Birthday celebration for Gina at all places - Chuck-E-Cheese . You are truly a fairy "god-mommy!" You live in the moment and find true joy. What an inspiration to us all who get bogged down in the day to day hustle and bustle. Thank you for sharing so much of yourself with us...I know you were tired. Even still you found a way to climb your way through the kids climber to help Gina up so she could slide down the slide. As I watched you boogey with the girls on stage, I knew how blessed Gina truly is to call you Aunt Mary. I love you and pray daily that you know how much we all appreciate you....support you and are there for you. We love you Mary.
Tuesday, February 1, 2011
Happy Birthday
Well, it's Mary's Birthday and I pray that all of her and our wishes come true....complete recovery from this devastating illness. She is going through a lot and still worries that others are doing too much! Ah, Mary. You are a true angel and I hope you know how much you are loved! We are here to help and support you.
I took over dinner yesterday afternoon and surprised her with an early Birthday cake. She was looking well though tired. Josie was her adorable self and definitely enjoyed the balloons that came with the cake and I love to see how she brings a sparkle to Mary. Mary's Massage Therapist was just leaving and it definitely did her some good. She felt very relaxed but definitely could have used a nap. She did seem a bit hoarse and was contemplating calling her primary care doctor. She began feeling that way while getting her therapy so the hope is it is the body shedding the toxins. Oh, let us hope that is true!! I hope though she is feeling much better today. I did not have the opportunity to call her.
Keep all the positive thoughts coming.
I took over dinner yesterday afternoon and surprised her with an early Birthday cake. She was looking well though tired. Josie was her adorable self and definitely enjoyed the balloons that came with the cake and I love to see how she brings a sparkle to Mary. Mary's Massage Therapist was just leaving and it definitely did her some good. She felt very relaxed but definitely could have used a nap. She did seem a bit hoarse and was contemplating calling her primary care doctor. She began feeling that way while getting her therapy so the hope is it is the body shedding the toxins. Oh, let us hope that is true!! I hope though she is feeling much better today. I did not have the opportunity to call her.
Keep all the positive thoughts coming.
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