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
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