Apart from the saving grace of my Holy Spirit miraculous moment, I really had a rough couple of weeks around Easter (I know I am behind!) and I realize that I need to document them before I forget them entirely.
First there was the Flu that ruined our Great Wolf Lodge/Easter Plans. Ajay and Shane were still getting over the remnants of the diarrhea part of the flu when we left to go, I assumed I managed to skirt it since I'm on SO MANY DRUGS and stuff. BUT, apart from a nightmare of a morning we were supposed to leave (I almost OD'd my son Shane on albuterol in the breathing machine- bad mommie) so he was wigged out for awhile and we didn't leave till he was feeling better. Then we hit ALL the traffic possible heading to Williamsburg I guess and a 3 hr ride took over 6 hrs. We were all ready to jump out of our skin. So now we arrived around dinner time and not the mid day as planned leaving us barely enough time to do a little MagiQuest (WAY COOL game with wands and enchanted props around the hotel for the kids to do quests etc. with) and then eat dinner and call it a night. Later that night when I was almost done with my lactate ringers, I suddenly got horrible chills- i was freezine to the bone! Then I got fevers and horrible body aches and by morning it was clear that I had the flu. So Ajau and the kids muddled thru breakfast an dthen went to the water park only to return about 2 hrs later as Ashton had a fever and was clearly getting the flu as well. What a group of sickies we made! Oh- and on top of it all, they had screwed up our room and while they did get us a room in the end, we were asked to move the next day- but they offered us a discount to sweeten the deal/compensate the inconvenience. SO here I am in bed sick waiting for the call to move rooms, and here comes the whole crew back and Shane and Ajay were STILL dealing with a bit of diahrrea here and there! Josie was the only healthy one really- so far at least! So I told Ajay to go down and just ask if we could get out of our reservation altogether and just go home. As I hoped, they were so overbooked, they were happy to see our sick asses go- and not only didn't charge us for the next night or late check out, but they applied the discount to the first night that they had offered to move rooms. Not bad consolation prize. Suffice to say we owe our kids another trip to Great Wolf Lodge- what a bummer (KIDDING- we LOVE THAT PLACE!). But we weren't about to go to my moms and bring the disease to them! They are too old to be getting sick etc, so we had to stay home and finagle throwing Easter together, baskets and all since my mom had made them up for me (she was a little sad/ticked off about that- what to do with all the stuff she got for them- I said CHARITY!). Come Easter Sunday, hours after brunch at Brewers Alley (really good actually), just when I thought I had escaped the GI demon part of the flu since I take so many probiotics each day, it hit me and hard early Sunday evening- just when we were getting ready to do popcorn and movies together as a family- FIGURES! And I didn't just get the big "D", I got it BAD- like the worst in my life- worse than the prep I had to do for a Colonoscopy- go figure! And by the end, there was nothing left in me to go and I guess in a whacked way it was a much needed colon cleanse! Sooooooo.......By Tue I was feeling pretty worn out, weak and weary and frankly in the depths of my 'pit of despair'.
I was crying a lot, which I guess I needed to do to just get it all out. And of course when I was out under my weeping willow tree one afternoon (my spiritual 'zone') Ajay came out and assumed that he had done something wrong. It took a lot for me to open up frankly- it has taken a lot for me to be so open in these blogs (although there are probably more for me than anyone bored enough to read the novels) let alone to be open to my husband in a 'I'm emotionally at my lowest and yes I probably just need you to support me) way which is a form of weakness- and I am not weak. Anyhoo- I did force myself to be open and admit that was what was going on, and we ended up snuggling on the couch under the tree- no talking- just me weeping and he holding me. But then I looked up and was watching the branches sway in the wind (kind of like the trees in Phenomenon and how they relaxed John Travolta) and it was calming to me and I was able to collect my thoughts enough to ask the Holy Spirit- "Will this ever end? Is there an end to all this and will I actually be better again? Will I ever be able to once again take care of my family as I used to? Please give me a sign just let me know somehow that I need not worry that I am broken and there is no end in sight- will this ever end?". Well, wouldn't you know, less than a minute later, Ajay suddenly felt compelled to give me his 'rah rah' speech assuring me that I WAS going to get better, that I am almost through the treatment regimen and I AM getting better- even if I don't see it or entirely feel it yet, and this is all temporary, the weight gain, the nanny- one day everything will be back the way it used to be. Well talk about a rapid response to my question! I was in awe and amazed. I asked Ajay what made him say all that just then- and he just said he felt like I needed it- like he was feeling pushed to do it right then. Crying again I told him how I had JUST ASKED THE HOLY SPIRIT for a sign and low and behold, Ajay GAVE ME MY SIGN a mere minute later- now that's fast service! So THAT was quite spiritually renewing and fulfilling. I truly felt lighter and my emotional black cloud just seemed to lift up and float away- and it felt great! I felt like a new person and my outlook was back to being upbeat and positive- the strong and optimistic Mary was BACK!
And THEN.......Wed April 27th - the very next day, well that night was a literal horror. I guess my body didn't like the new seizure med tegatrol my lyme doc had prescribed and I was slowly ramping up on, because about 2 hours after I took my evening meds with 600 mg of it, I had a violent reaction. I could barely see, I couldn’t walk, and I could barely hear anything except theoverwhelming and loud ringing in my ears! Poor Ajay- he literally had to carry me to the bathroom after I got up the first time to go to the loo and totally collapsed and hit my head on the side table. I bruised my temple and my jaw was sore for a few days, but other than that it just completely freaked Ajay out and made us realize I had NO CONTROL over my legs! Then I got fevers and chills and threw up so violently (and multiple times) that I burst a blood vessel in my eye. Plus I had nausea and the head/body disconnect thing a bit so I was petrified some of it might be due to low sodium, even though my last results were up to 128 (normal is OVER 135- I've been as low as 125 and was at 107 when I almost died in the beginning of December and back in late Aug/early Sept in FL). At some points I really thought dying was a good option and was praying as much as my brain was able to. It was HORRIBLE and I hope I don’t have ANY OTHER NIGHTS/EPISODES like that one. The next day was only slightly better. I felt like my legs were jelly- very little control. The ringing was down a bit, but the nausea was still pretty bad and I just slept most of the day. By evening I was able to sit up and try a little food- peanut butter toast, some apples and a banana was it. The thought of eating anything else was nauseating. Oh- and I had to cancel the SPA EVENING I had planned WEEKS EARLIER with Margie Harp thanks to this medical mishap! I was so bummed for BOTH of us!
First there was the Flu that ruined our Great Wolf Lodge/Easter Plans. Ajay and Shane were still getting over the remnants of the diarrhea part of the flu when we left to go, I assumed I managed to skirt it since I'm on SO MANY DRUGS and stuff. BUT, apart from a nightmare of a morning we were supposed to leave (I almost OD'd my son Shane on albuterol in the breathing machine- bad mommie) so he was wigged out for awhile and we didn't leave till he was feeling better. Then we hit ALL the traffic possible heading to Williamsburg I guess and a 3 hr ride took over 6 hrs. We were all ready to jump out of our skin. So now we arrived around dinner time and not the mid day as planned leaving us barely enough time to do a little MagiQuest (WAY COOL game with wands and enchanted props around the hotel for the kids to do quests etc. with) and then eat dinner and call it a night. Later that night when I was almost done with my lactate ringers, I suddenly got horrible chills- i was freezine to the bone! Then I got fevers and horrible body aches and by morning it was clear that I had the flu. So Ajau and the kids muddled thru breakfast an dthen went to the water park only to return about 2 hrs later as Ashton had a fever and was clearly getting the flu as well. What a group of sickies we made! Oh- and on top of it all, they had screwed up our room and while they did get us a room in the end, we were asked to move the next day- but they offered us a discount to sweeten the deal/compensate the inconvenience. SO here I am in bed sick waiting for the call to move rooms, and here comes the whole crew back and Shane and Ajay were STILL dealing with a bit of diahrrea here and there! Josie was the only healthy one really- so far at least! So I told Ajay to go down and just ask if we could get out of our reservation altogether and just go home. As I hoped, they were so overbooked, they were happy to see our sick asses go- and not only didn't charge us for the next night or late check out, but they applied the discount to the first night that they had offered to move rooms. Not bad consolation prize. Suffice to say we owe our kids another trip to Great Wolf Lodge- what a bummer (KIDDING- we LOVE THAT PLACE!). But we weren't about to go to my moms and bring the disease to them! They are too old to be getting sick etc, so we had to stay home and finagle throwing Easter together, baskets and all since my mom had made them up for me (she was a little sad/ticked off about that- what to do with all the stuff she got for them- I said CHARITY!). Come Easter Sunday, hours after brunch at Brewers Alley (really good actually), just when I thought I had escaped the GI demon part of the flu since I take so many probiotics each day, it hit me and hard early Sunday evening- just when we were getting ready to do popcorn and movies together as a family- FIGURES! And I didn't just get the big "D", I got it BAD- like the worst in my life- worse than the prep I had to do for a Colonoscopy- go figure! And by the end, there was nothing left in me to go and I guess in a whacked way it was a much needed colon cleanse! Sooooooo.......By Tue I was feeling pretty worn out, weak and weary and frankly in the depths of my 'pit of despair'.
I was crying a lot, which I guess I needed to do to just get it all out. And of course when I was out under my weeping willow tree one afternoon (my spiritual 'zone') Ajay came out and assumed that he had done something wrong. It took a lot for me to open up frankly- it has taken a lot for me to be so open in these blogs (although there are probably more for me than anyone bored enough to read the novels) let alone to be open to my husband in a 'I'm emotionally at my lowest and yes I probably just need you to support me) way which is a form of weakness- and I am not weak. Anyhoo- I did force myself to be open and admit that was what was going on, and we ended up snuggling on the couch under the tree- no talking- just me weeping and he holding me. But then I looked up and was watching the branches sway in the wind (kind of like the trees in Phenomenon and how they relaxed John Travolta) and it was calming to me and I was able to collect my thoughts enough to ask the Holy Spirit- "Will this ever end? Is there an end to all this and will I actually be better again? Will I ever be able to once again take care of my family as I used to? Please give me a sign just let me know somehow that I need not worry that I am broken and there is no end in sight- will this ever end?". Well, wouldn't you know, less than a minute later, Ajay suddenly felt compelled to give me his 'rah rah' speech assuring me that I WAS going to get better, that I am almost through the treatment regimen and I AM getting better- even if I don't see it or entirely feel it yet, and this is all temporary, the weight gain, the nanny- one day everything will be back the way it used to be. Well talk about a rapid response to my question! I was in awe and amazed. I asked Ajay what made him say all that just then- and he just said he felt like I needed it- like he was feeling pushed to do it right then. Crying again I told him how I had JUST ASKED THE HOLY SPIRIT for a sign and low and behold, Ajay GAVE ME MY SIGN a mere minute later- now that's fast service! So THAT was quite spiritually renewing and fulfilling. I truly felt lighter and my emotional black cloud just seemed to lift up and float away- and it felt great! I felt like a new person and my outlook was back to being upbeat and positive- the strong and optimistic Mary was BACK!
And THEN.......Wed April 27th - the very next day, well that night was a literal horror. I guess my body didn't like the new seizure med tegatrol my lyme doc had prescribed and I was slowly ramping up on, because about 2 hours after I took my evening meds with 600 mg of it, I had a violent reaction. I could barely see, I couldn’t walk, and I could barely hear anything except theoverwhelming and loud ringing in my ears! Poor Ajay- he literally had to carry me to the bathroom after I got up the first time to go to the loo and totally collapsed and hit my head on the side table. I bruised my temple and my jaw was sore for a few days, but other than that it just completely freaked Ajay out and made us realize I had NO CONTROL over my legs! Then I got fevers and chills and threw up so violently (and multiple times) that I burst a blood vessel in my eye. Plus I had nausea and the head/body disconnect thing a bit so I was petrified some of it might be due to low sodium, even though my last results were up to 128 (normal is OVER 135- I've been as low as 125 and was at 107 when I almost died in the beginning of December and back in late Aug/early Sept in FL). At some points I really thought dying was a good option and was praying as much as my brain was able to. It was HORRIBLE and I hope I don’t have ANY OTHER NIGHTS/EPISODES like that one. The next day was only slightly better. I felt like my legs were jelly- very little control. The ringing was down a bit, but the nausea was still pretty bad and I just slept most of the day. By evening I was able to sit up and try a little food- peanut butter toast, some apples and a banana was it. The thought of eating anything else was nauseating. Oh- and I had to cancel the SPA EVENING I had planned WEEKS EARLIER with Margie Harp thanks to this medical mishap! I was so bummed for BOTH of us!
The next day (Friday) was infusion day again- and Alison/Jemsek team said that it was also possible that this was a herxing reaction to the Levaquin since it is so strong. I am betting on the tegatrol and we’ve been ratcheting back on it to the lowest dose- to get off of it altogether was my hope, but apparently not! My nurse Alison was the bearer of bad news- I have to stay on it at the lower level. So I guess we’ll see.
[recent update- still on the lowest dosage of the tegatrol and no more 'incidents' like that one thank GOD! But I did have a seizure on May 11th- Ajay's birthday- a whole other blog/story for sure since Ajay almost died that day- and tonight - earlier of course since I am now able to write somewhat coherently. Actually I wrote most of this sometime ago but never finsihed and published it- so I am finally doing that!]
But there have been other amazing moments. I had this wonderful lady/home chef make me a bunch of gluten free meals to help me to eat better without having to stress over cooking. She made meals for me last summer as well. Well she is very religious, and after we put all the stuff away, she asked if we could pray together and we held hands as she said a wonderful prayer for me/with me. That gave me a little boost. Then I dragged myself to get my hair cut Friday after my 'medication mishap' and my stylist (have used the same one for years so she knows like my entire life of course!) told me that a week ago or so she was cutting a lady’s hair and somehow got on the topic of lyme disease and the lady said that there was someone at her church who had lyme disease really bad and that she and everyone were praying for her. My stylist asked if she was talking about Mary Patil- and she was! So I am constantly getting reminders that I have a TON of people praying for me and its humbling and encouraging. Somedays its just not enough I am afraid- at least for the past month or so. But as you can see- I am bouncing back and I have survived the 'pit of despair' and have not only made my way out, I am sitting on the ledge throwing pennies into the pit making wishes and giving thanks!
But there have been other amazing moments. I had this wonderful lady/home chef make me a bunch of gluten free meals to help me to eat better without having to stress over cooking. She made meals for me last summer as well. Well she is very religious, and after we put all the stuff away, she asked if we could pray together and we held hands as she said a wonderful prayer for me/with me. That gave me a little boost. Then I dragged myself to get my hair cut Friday after my 'medication mishap' and my stylist (have used the same one for years so she knows like my entire life of course!) told me that a week ago or so she was cutting a lady’s hair and somehow got on the topic of lyme disease and the lady said that there was someone at her church who had lyme disease really bad and that she and everyone were praying for her. My stylist asked if she was talking about Mary Patil- and she was! So I am constantly getting reminders that I have a TON of people praying for me and its humbling and encouraging. Somedays its just not enough I am afraid- at least for the past month or so. But as you can see- I am bouncing back and I have survived the 'pit of despair' and have not only made my way out, I am sitting on the ledge throwing pennies into the pit making wishes and giving thanks!
I know I’ve been down right rotten about keeping in constant contact with everyone as much as I want to and promised to. Please bear with me. My schedule is just so much more busy than I had anticipated. Between appts, aquatherapy, errands and kid stuff (I do attend more and more of it as I feel better) I just seem to be always on the go! And sometimes I am DAYS behind doing emails- not always the best way to reach me I am afraid- unless you are patient and have time for a response. if not, CALL ME (like Blondie Sings! CALL ME- YOU CAN CALL ME ANY DAY OR NIGHT- CALL ME!
I do want to give a shout out to all my IV CHICKS who come out every Mon, Wed & Fri of treatment weeks and take care of me setting up my IV therapy, oral meds, packing pills for the week, making shakes etc. etc. Beth Hess, Michelle Auchter with her friends Niki and Renee and occasionally Susan Moore and Stacie Lemick (who did it today actually) are my HEROES and they give up an aweful lot to be able commit to coming up one day EVERY WEEK to take care of me- and I am truly humbled by their generous gift of time and talents to help me!
So HAPPY BELATED EASTER! I hope that yours was uneventful and a blessed day with family and friends. Don't get me wrong- ours was still blessed, it just wasn't what we had planned is all I am saying! If you ever want to take the family to an awesome indoor waterpark vacation (especially when its cold outside) ask me about Great Wolf Lodge and I'll fill you in on ALL the awesome details- AND probably have a great discount as I often get them for being a returning customer.
I do want to give a shout out to all my IV CHICKS who come out every Mon, Wed & Fri of treatment weeks and take care of me setting up my IV therapy, oral meds, packing pills for the week, making shakes etc. etc. Beth Hess, Michelle Auchter with her friends Niki and Renee and occasionally Susan Moore and Stacie Lemick (who did it today actually) are my HEROES and they give up an aweful lot to be able commit to coming up one day EVERY WEEK to take care of me- and I am truly humbled by their generous gift of time and talents to help me!
So HAPPY BELATED EASTER! I hope that yours was uneventful and a blessed day with family and friends. Don't get me wrong- ours was still blessed, it just wasn't what we had planned is all I am saying! If you ever want to take the family to an awesome indoor waterpark vacation (especially when its cold outside) ask me about Great Wolf Lodge and I'll fill you in on ALL the awesome details- AND probably have a great discount as I often get them for being a returning customer.
Now BEFORE all this wonderful madness- I had a number of seizures, including one on April 15th-the day that Ajay’s mom was leaving after spending a week with us - and I managed to go seizure free all week which I was so grateful for because I knew it would freak her out! And unfortunately it did, and she was a bit upset. But I managed to come downstairs before she left with Ajay’s aunt so she could see I was okay (although I wasn’t totally recovered yet). It was frustrating because I was literally showing her movies of Shane doing gymnastics one minute (while doing lactate ringers) and the next I feel a seizure coming on! So I told Ajay I was feeling weird/perhaps one coming on, then I laid down on the coach, and sure enough one came on. It lasted over an hour too, and was a bit different from the rest.
Actually all the seizures for the weeks prior to April 15th had been a bit different-more emotional and less shaking as before. I have these weird dream clips and am like acting out with my hands. Its kind of weird. And I feel like there’s something in my head that I want to shake out, and I usually get a migraine.
The Sunday before that (during VACATION WEEK- March 27th!) I had 2 seizures back to back- which had never happened before. And then I had one everyday Mon-Thurs that week and then finally got a break- and that was ALL during my VACATION WEEK from meds!
Actually all the seizures for the weeks prior to April 15th had been a bit different-more emotional and less shaking as before. I have these weird dream clips and am like acting out with my hands. Its kind of weird. And I feel like there’s something in my head that I want to shake out, and I usually get a migraine.
The Sunday before that (during VACATION WEEK- March 27th!) I had 2 seizures back to back- which had never happened before. And then I had one everyday Mon-Thurs that week and then finally got a break- and that was ALL during my VACATION WEEK from meds!
But after all is said and done......Its been a rough few months, probably the most difficult, so it's been hard to document/update this blog- but this one sure covers the bulk of it! And now i think I am starting to come out of the 'valley of darkness' and find the mountain of miracles on the other side!
Keep up the prayers and know that while things have been rough for me these past few months, there are brighter days ahead now....and life could always be worse!. So never forget to pray for those who are less fortunate than me and are also afflicted with this terrible disease- or any other illness or cross they may be bearing.at this time in their life and feeling the heavy load of the weight of their crossl
Love and blessings,
Mary
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