As some of you may know, one of the symptoms of my illnesses is that, at times, my brain doesn't quite function at it's best, and I do and say some rather silly things.
It has been a while since I've posted one of my 'brain fade' moments, so thought I'd gift you with a new little moment of entertainment.
Tash's Brain Fade Moments: Episode 4
I was rinsing out a plastic container before placing it in the recycling tub. So far, so good.
I knew that I had to pour out the water from the container into the sink before placing it in the recycling. Brain was doing well up until this point.
However, my grey matter was a bit slow in sending this message to my body.
As a result, turning away from the sink on route to the recycling tub, I proceeded to pour the water all over the kitchen floor.
Well done Tash. Well done.
Monday, March 31, 2014
Saturday, March 22, 2014
Lyme Disease: Weighing Up Options and Costs, and Fearing Others' Judgement.
I wrote this on Thursday March 20. I was freaking out, having spent a large amount of money on a fancy juicer, in order to get the greatest nutrients (with the least amount of energy expenditure) from the juice which my doctor has instructed me to drink every day as part of my treatment protocol.
Ok, so, here's the thing: we all struggle. That's not to say that life doesn't and can't hold much joy too (cos it totally does!) but that we all, at times, struggle with fears, insecurities, frustrations, anxieties, anger, grief...
Tonight I'm struggling with spending huge (at least for me) amounts of money on things to do with my medical treatment, and fearing the judgement of others in this - that they may think spending money on things that I'm choosing to spend money on isn't worth it. But I know that I need to trust myself, know that I have put thought into these things, & sought the guidance of others in my decisions. Plus, I just want to do the best that I can to get better, even if, in the end, it takes every dollar I've got. Though, I admit, I do also fear running out of money before I am well enough to return to part time work, and going back to that place I've been before where there is not enough money for both bills and food.
Treatment for Lyme disease & co-infections can cost tens of thousands of dollars and there are so many recommendations out there as to things (many very expensive) that can aid treatment, alongside the prescription medication I am taking (some of which is also very expensive!) I'm not going to go out there and buy all the products recommended to sufferers of Lyme Disease. I couldn't afford it even if I wanted to! I will take my doctors advice and do some research to find out which products and procedures are likely to be of most benefit to me. Hopefully in time, the combination of pharmaceutical and other supporting treatments will help me get to the point where I feel somewhat healthy again.
...and just as I am finishing writing this post, a reminder pops up on my phone saying "Where is God in this?" Immediately I feel more at ease, knowing that God is with me, and loves me no matter what
Ok, so, here's the thing: we all struggle. That's not to say that life doesn't and can't hold much joy too (cos it totally does!) but that we all, at times, struggle with fears, insecurities, frustrations, anxieties, anger, grief...
Tonight I'm struggling with spending huge (at least for me) amounts of money on things to do with my medical treatment, and fearing the judgement of others in this - that they may think spending money on things that I'm choosing to spend money on isn't worth it. But I know that I need to trust myself, know that I have put thought into these things, & sought the guidance of others in my decisions. Plus, I just want to do the best that I can to get better, even if, in the end, it takes every dollar I've got. Though, I admit, I do also fear running out of money before I am well enough to return to part time work, and going back to that place I've been before where there is not enough money for both bills and food.
Treatment for Lyme disease & co-infections can cost tens of thousands of dollars and there are so many recommendations out there as to things (many very expensive) that can aid treatment, alongside the prescription medication I am taking (some of which is also very expensive!) I'm not going to go out there and buy all the products recommended to sufferers of Lyme Disease. I couldn't afford it even if I wanted to! I will take my doctors advice and do some research to find out which products and procedures are likely to be of most benefit to me. Hopefully in time, the combination of pharmaceutical and other supporting treatments will help me get to the point where I feel somewhat healthy again.
...and just as I am finishing writing this post, a reminder pops up on my phone saying "Where is God in this?" Immediately I feel more at ease, knowing that God is with me, and loves me no matter what
Lyme Disease: Diagnosis + Antibody Issues.
On Wednesday March 5, 2014 at 4pm, I had a doctor's appointment. Due to the doctor I've been seeing for the past couple years reducing his patient load, this was my first appointment with the other doctor in the practice, the other doctor in the team that work together to help so many with chronic illness.
During this appointment, twelve months after my doctor first suggested the possibility of Lyme disease, I received confirmation:
I have Lyme Borreliosis, along with Babesiosis (Babesia). There are other co-infections and complicating factors which cannot yet be ruled out.
I went through a mix of emotions over the next few hours. Disbelief, shock, and then excitement and joy at the thought that with treatment there is actually a very real possibility that I could get significantly better.
A couple more medications were added to my treatment protocol: Firstly, rivotril, and secondly, I have been put back onto the dreaded azithromycin. The drug that made me terribly depressed on just 1/4 tablet last time. My doctor is certain that having been on minomycin for a couple of months now, and with the assistance of the rivotril and a detoxing juice that she has instructed me to drink every day, I will not have such horrible herxing this time around. I have been taking 1/4 tab of azithromycin, 3 days per week for the past couple of weeks. Apart from it causing me to have weird and, at time, unpleasant dreams every night, as it also did last time, it seems to be so far so good. This next week I'll increase to 1/4 tab 5 days per week which I'll do for a fortnight before the big jump to one whole tablet per day, 5 days per week. I've been instructed to call my doctor in the next week or so to give her an update on how I'm doing. Or, at least, speak to the nurse, who'll then pass on the message to my doctor. At the end of this appointment, I had some blood taken, just to check up on a few things.
About a week later, I received a call asking me to come back in to have a chat about my test results. I thought this strange, but wasn't really concerned as it was just basic blood tests that had been done. More intrigued.
As it turns out, I was right about it not being anything worth worrying about. My doctor just wanted to talk to me about my ANA levels (Anti-nuclear Antibody). The accepted range for ANA is <160. Mine reads as >1280. It's been at this super high level since it was first tested in 2012. That's not ideal but at the same time I'm not freaking out about it. Strong positive ANA is associated with significant autoimmune disease, including Scleroderma, Rheumatoid Arthritis and Lupus. It is also not necessarily associated with either Lyme Disease, it's co-infections or my other diagnosis of a genetic connective tissue disorder, similar to Ehlers-Danlos Syndrome, so it's worth noting.
My doctor thinks that we might be able to lower my ANA level by completely eliminating dairy and eggs from my diet. For the past couple of years I've been off of cows milk products (apart from a very occasional treat, I admit!) and also haven't been eating eggs, apart from in small amounts occasionally such as in a cake that I didn't bake myself. I have, however, been eating goat's and sheep's milk products. My doctor says that these things now have to go. So, for the next 3 months not a speck of dairy or egg is to pass my lips. I will then have my ANA levels retested, and if they are still through the roof then I'm off to see a rheumatologist. She also increased my dose of plaquenil to 2 per day, 7 days a week (up from 1 per day, 5 days per week), to try to help with my aches and pains and the cramping and stiffness that I get in my hands (though the cramping is definitely better since starting daily magnesium injections in December), and also increased my dose of minomycin from 2 tablets a day, to 3 tablets a day, 5 days per week.
My next doctors appointment is in early June. I've already got the pathology request to have my ANA levels retested, along with checking a few other things, so I'll get that done a week beforehand so we can discuss the results at my appointment. And then? Who knows what the next step in this adventure will hold!
During this appointment, twelve months after my doctor first suggested the possibility of Lyme disease, I received confirmation:
I have Lyme Borreliosis, along with Babesiosis (Babesia). There are other co-infections and complicating factors which cannot yet be ruled out.
I went through a mix of emotions over the next few hours. Disbelief, shock, and then excitement and joy at the thought that with treatment there is actually a very real possibility that I could get significantly better.
A couple more medications were added to my treatment protocol: Firstly, rivotril, and secondly, I have been put back onto the dreaded azithromycin. The drug that made me terribly depressed on just 1/4 tablet last time. My doctor is certain that having been on minomycin for a couple of months now, and with the assistance of the rivotril and a detoxing juice that she has instructed me to drink every day, I will not have such horrible herxing this time around. I have been taking 1/4 tab of azithromycin, 3 days per week for the past couple of weeks. Apart from it causing me to have weird and, at time, unpleasant dreams every night, as it also did last time, it seems to be so far so good. This next week I'll increase to 1/4 tab 5 days per week which I'll do for a fortnight before the big jump to one whole tablet per day, 5 days per week. I've been instructed to call my doctor in the next week or so to give her an update on how I'm doing. Or, at least, speak to the nurse, who'll then pass on the message to my doctor. At the end of this appointment, I had some blood taken, just to check up on a few things.
About a week later, I received a call asking me to come back in to have a chat about my test results. I thought this strange, but wasn't really concerned as it was just basic blood tests that had been done. More intrigued.
As it turns out, I was right about it not being anything worth worrying about. My doctor just wanted to talk to me about my ANA levels (Anti-nuclear Antibody). The accepted range for ANA is <160. Mine reads as >1280. It's been at this super high level since it was first tested in 2012. That's not ideal but at the same time I'm not freaking out about it. Strong positive ANA is associated with significant autoimmune disease, including Scleroderma, Rheumatoid Arthritis and Lupus. It is also not necessarily associated with either Lyme Disease, it's co-infections or my other diagnosis of a genetic connective tissue disorder, similar to Ehlers-Danlos Syndrome, so it's worth noting.
My doctor thinks that we might be able to lower my ANA level by completely eliminating dairy and eggs from my diet. For the past couple of years I've been off of cows milk products (apart from a very occasional treat, I admit!) and also haven't been eating eggs, apart from in small amounts occasionally such as in a cake that I didn't bake myself. I have, however, been eating goat's and sheep's milk products. My doctor says that these things now have to go. So, for the next 3 months not a speck of dairy or egg is to pass my lips. I will then have my ANA levels retested, and if they are still through the roof then I'm off to see a rheumatologist. She also increased my dose of plaquenil to 2 per day, 7 days a week (up from 1 per day, 5 days per week), to try to help with my aches and pains and the cramping and stiffness that I get in my hands (though the cramping is definitely better since starting daily magnesium injections in December), and also increased my dose of minomycin from 2 tablets a day, to 3 tablets a day, 5 days per week.
My next doctors appointment is in early June. I've already got the pathology request to have my ANA levels retested, along with checking a few other things, so I'll get that done a week beforehand so we can discuss the results at my appointment. And then? Who knows what the next step in this adventure will hold!
Caribbean Pink Information Session: We Did It!
A few weeks ago we managed to pull off Caribbean Pink's very first volunteer information session. Thank you so very much for all who attended, it was wonderful to have a good group in attendance.
There are still a few bits and pieces that need to be organised before we can refresh our first room - but we are slowly but surely moving in that direction!
For those of you who have put your name down as a potential Caribbean Pink volunteer - thank you! I do apologise for the delay in getting in contact with you. I promise we will be in contact, hopefully within the next couple of weeks.
I currently have a lot going on, with a new health diagnosis, ramping up medical treatment, and a difficult family situation. However, I am determined not to give up on the Caribbean Pink dream, and, with the help of people like yourselves, it will happen. We will see this service bring some joy to the lives of people who are bedridden or housebound with chronic or terminal illness.
Thank you once again for your ongoing support, encouragement and assistance.
If you have any questions, any suggestions, or would like to offer to help with something specific as we work towards getting Caribbean Pink up and running, please do let me know by emailing me at caribbeanpink.natasha@gmail.co
With gratitude,
Natasha
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