Please Don't Ask Me That Question.

Conversations with Tash: A Guide for Friends, Family and Acquaintances.

For better conversation, unless you're really interested, and have the time to hear about the details of my daily struggles & triumphs (& even then, I'd rather not talk about this all the time), instead of asking me how I am or what's been going on in my life (which generally results in me answering somewhat awkwardly "yeah, ok..." & "not much"), please chat with me about TV shows, politics, world events, social justice issues, sport (particularly AFL or cricket), Theology, issues of ethics or morality, and/or The Arts. 
I also, quite honestly, would love to hear about you and your life. 

Cheers!

___________________________


As with many others living every day with chronic illness, it is very difficult to answer a question about what's going on in my life without talking about illness. 

I do have close friends and trusted people in my life with whom I can be vulnerable and talk about my struggles & griefs, as well as the triumphs; people who I know really know me, and care. It's important to have those people. However, in general, when it comes to casual conversation, or bumping into someone at an event or at the shops (on those occasions when I actually leave the house for something other than a medical appointment!), the questions "how are you?", "what are you doing now?" or "what's going on in your life at the moment?" make me internally cringe, and feel like hiding. I don't blame people for asking those questions, heck I've asked people those questions countless times myself. But at this point in my life, I feel awkward answering, and my answer has the potential to kill the conversation. 

Somehow answering the question of "what's been going on?" honestly with something along the lines of "oh you know, feeling like crap constantly, trying to get through each day, taking lots of tablets, feeding myself when I can, dragging myself to doctor's appointments, pulling up syringes and giving myself injections, making detox juice, wanting to throw up, and laying in bed in pain feeling completely exhausted to the point of barely being able to move" just doesn't seem like a fun and socially acceptable way to start a conversation. So instead, I generally shrug, and with some embarrassment and awkwardness, answer with something along the lines of, "not much really".

However, there IS a lot of fun and interesting stuff to talk about. I would much prefer to talk about something that I'm passionate about or that I find entertaining, rather than always talking about health stuff or other difficulties. I live with that stuff 24/7 so it's nice to have a break from thinking about it! Plus, I'd like people to understand that there is so much more to me than how I am currently spending my time. 

There are friends, family and acquaintances, particularly those who I haven't seen for a few years, who may not realise that 'what I do' right now is simply focussing on looking after myself and trying to get better, taking each day as it comes & doing what I need to do to help care for my mum (who is also extremely unwell and for whom I am guardian). It doesn't involve paid work, or even much by the way of leisure activity. 

So, here's a helpful tip for how to have a more interesting, fun, life giving conversation with me, rather than one that may falls a bit flat. Talk with me about TV shows, politics, world events, social justice issues, sport, Theology, issues of ethics or morality, and/or The Arts. These are things that I can get excited and passionate about, things that are fun and interesting to me, things that enable me to express something of who I am apart from a person living with chronic illness. 

And as for asking "so, what are you doing with yourself nowadays?" 
Please, don't ask me that question.




Are you a person living with disabling chronic illness? Do you struggle answering these sorts of questions?

Do you know someone, a friend or family member, living with a debilitating chronic illness and struggle to know how to have a conversation with them?

It would be great to hear your (respectful) feedback, and get some conversation going around this topic.

Tash's Brain Fade Moments: Episode 4

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.

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 

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!

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.com.

With gratitude,
Natasha

Caribbean Pink Volunteer Roles: Other Ways You Can Be Part of The Team

In just 5 days Caribbean Pink will be holding our first volunteer information session. We are looking for people to fill a number of volunteer roles. Some of you may think that you would love to help out, but you don't have the ability to help with the room refreshing or with managing finances or administration. If that is the case, here's some ways that you can still be part of the Caribbean Pink team!

Financial Supporters
- Running a service like Caribbean Pink requires money. Financial supporters might prefer to give a one off gift, or a regular monthly donation.

Homewares and Crafts Donations
- Do you have a talent for making things? Could you sew together some cushions or curtains? Make some bunting? We would love to hear from you!

Prayer Team
- If you are someone who loves to pray, it would be wonderful if you would commit to praying regularly for Caribbean Pink and the people that we serve.

You might also like to organise your own fundraiser for Caribbean Pink, or you might even be interested in setting up a similar service in your own area. If this is the case, do contact us!

Have some time on Sunday afternoon and interested in finding out more? Come along to our volunteer information session!

When: Sunday March 2nd
Time: Midday
Where: Ringwood Church of Christ
13 Bedford Rd, Ringwood

Please help to spread the word, so that Caribbean Pink can start bringing joy to people who are bedridden or housebound with chronic or terminal illness.

Caribbean Pink Volunteers: Communications Manager

In less than 2 weeks Caribbean Pink will be holding our first volunteer information session. We are looking for people to fill a number of volunteer roles. One of these roles is 'Communications Manager'. Below is some information about what our Communications Manager will do. It is possible that this role could be divided between two people, with one focussing on online communication, and the other on communications with local council, illness support groups etc.

Communications Manager
- Manage the Caribbean Pink Facebook and Twitter pages/accounts
- Participate in deciding on the design and information to be included on the Caribbean Pink website (we do have a website designer lined up)
- Manage the Caribbean Pink website (once up and running)
- Write up and send out a regular email update to supporters
- Communicate with local council, support groups and other contact points for people with chronic or terminal illness
- Work with the fundraising co-ordinator on promotion/publicity for Caribbean Pink

This role is likely to require 5-10 hours per month of the volunteer's time.

Volunteer Information Session
When: Sunday March 2nd
Time: Midday
Where: Ringwood Church of Christ
13 Bedford Rd, Ringwood

Please help to spread the word, so that Caribbean Pink can start bringing joy to people who are bedridden or housebound with chronic or terminal illness.

Like ·  · Share

Caribbean Pink Volunteers: Designer/Shopper

In just about 2 weeks Caribbean Pink will be holding our first volunteer information session. We are looking for people to fill a number of volunteer roles. One of these roles is 'Designer/Shopper'. We hope to have more than one person fulfilling this position. Below is some information about what our Designer/Shoppers will do.

Designer/Shopper
- Attend initial meeting with client &/or caregiver, along with the team co-ordinator, in order to discuss preferences & practical requirements, and see the space to be refreshed.
- Decide on changes to be made in the room (in consultation with the client)
- Shop for items (curtains, doona, cushions etc) to be used in the room refreshing
- Attend and participate in the room refreshing, directing the team co-ordinator and room refresher as to room design/changes to be made.

This role is likely to require 5-10 hours per month of the volunteer's time.

Volunteer Information Session
When: Sunday March 2nd
Time: Midday
Where: Ringwood Church of Christ
13 Bedford Rd, Ringwood

Help spread the word, so that Caribbean Pink can start bringing joy to people who are bedridden or housebound with chronic or terminal illness.

Caribbean Pink Volunteers: Room Refreshers

In about 2 and a half weeks, Caribbean Pink will be holding our first volunteer information session. We are looking for people to fill a number of volunteer roles. One of these roles is 'Room Refresher'. Below is some information about what this role will look like.

Room Refreshers
- Attend and participate in the room refreshing, along with the Team Co-ordinator and Designer/Shopper.

The number of rooms that each Room Refresher will be asked to help with, will depend on both demand and volunteer numbers. However, we ask that each Room Refresher be available to take part in the refreshing of one room per month as a minimum. This equates to approximately 2 hours per month of the volunteers' time.

Volunteer Information Session:
When: Sunday March 2nd
Time: Midday
Where: Ringwood Church of Christ
13 Bedford Rd, Ringwood Vic 

Caribbean Pink Volunteers: Team Co-ordinator

In less than 3 weeks, Caribbean Pink will be holding our first volunteer information session. We are looking for people to fill a number of volunteer roles. One of these roles is 'Team Co-ordinator'. Below is some information about what this role will look like. Depending on the number of volunteers, there may be more than one Team Co-ordinator.

Team Co-ordinator
- Communicate with clients &/or caregivers
- Co-ordinate team of room refreshers & designer/shoppers.
- Attend initial meeting with client &/or caregiver, along with the designer/shopper, in order to discuss preferences & practical requirements, and see the space to be refreshed.
- Attend and participate in the room refreshing.

This role is likely to require 5-10 hours per month of the volunteer's time.

Volunteer Information Session
When: Sunday March 2nd
Time: Midday
Where: Ringwood Church of Christ
13 Bedford Rd, Ringwood Vic 

Caribbean Pink Volunteer Information Session

Those of you who have read some of my previous blog posts might remember that I am in the process of setting up an organisation called 'Caribbean Pink' whose aim is to bring some joy to the lives of people who are bedridden or housebound with chronic or terminal illness through 'refreshing' a room of their home, most often their bedroom.

Well, I have some great news! If you are keen to be a part of the work of bringing joy to people living with chronic or terminal illness, or would just like to find out more about Caribbean Pink, we have a volunteer information session coming up!

When: Sunday March 2nd
Time: Midday
Where: Ringwood Church of Christ
13 Bedford Rd, Ringwood Vic 

Please do share this information with your friends. 
We are excited about getting a great group of volunteers together and seeing our first rooms refreshed. For more information, check out our Facebook page: www.facebook.com/RoomRefreshingService, or shoot me an email at: caribbeanpink.natasha@gmail.com

Lyme Disease: The Diagnosis Journey Continues. Slowly, Slowly.

Happy New Year!

I apologise, once again, for the delay in writing this post. I do intend to write more often, but a lack of 'spoons' so often means that it just doesn't happen!

Well, the process of trying to ascertain whether or not I have Chronic Lyme Disease continues. I hoped to have an answer by now, but alas, I do not. However, I am another step or two along in the process. I admit, I am finding it rather frustrating and at times wish desperately that I knew for certain what, and everything that, is making me sick (and how to treat it!). However, I am trying to be a patient patient, and to remember that a few months is not a long time in the big picture of things.

Last time I wrote about my journey on the path of investigating the possibility of a Lyme diagnosis, I had been prescribed Plaquenil and Azithromycin after receiving inconclusive blood test results, as a diagnostic tool. I wrote:
"So far I have taken 3 doses of Plaquenil. Each time, I have felt nauseated in the afternoon and evening after having taken the drug in the morning, and have not had this nausea on the in-between days. However, as nausea is not a new symptom to me, I can't say at this point whether this might actually just be a coincidence. Nausea is also listed as a possible side effect of Plaquenil. I seems to me that it is likely that if I am to experience 'herxing' this is less likely to occur before I start on the Azithromycin"
It turns out that I was wrong. After 5 or 6 doses, the nausea got worse, and paired with indescribable fatigue, it hit me very hard. I felt extremely unwell for a few days, to the point of barely being able to even do basic things like feed myself, then thank fully it started to ease. After another couple of weeks I started to feel like I was back to my normal. The way that the symptoms increased over a few days and then eventually got better again, means that it is unlikely a reaction to the medication, as in an allergy, but instead, a symptom of the medication actually working. This was a little bit of evidence in the 'for' column for Lyme Disease, but is not enough for a diagnosis yet. 

The next medication to be introduced was Azithromycin, starting at at a very small dose. At first, I thought that I was not reacting to this drug, physically everything seemed within the realm of my what is normal for me (I was in a lot of pain, more than usual, but I felt that could probably be attributed to over exerting myself). However, gradually over a few days I found myself getting more and more anxious and depressed. After about a week I found myself in a terribly depressed state, crying hard and uncontrollably for several hours on end and feeling like something was very wrong with me. This did improve after a couple of days, but I was still left feeling emotionally 'flat', and mildly to moderately depressed most of the time. After about three weeks, I visited my doctor again and was taken off this medication. Within a few days I started to feel like myself again.

When I was taken off Azithromycin, I was put on to another medication, Trimethoprim. This was primarily to give an indication as to whether I might have the co-infection Bartonella. Usually, if someone is going to herx on this medication it happens quite quickly and severely. However, after a couple of weeks on Trimethoprim, I noticed very little difference in my symptoms. Therefore, my doctor has concluded that I likely do not have Bartonella. He does suspect, though, that I may have another co-infection, Babesia, for which I show more associated symptoms.

After stopping the Trimethoprim, I went back on to the Azithromycin. Unfortunately, within a few days the feeling of depression returned and started to increase in intensity again. I informed my doctor who advised that I stop taking it. I have continued to take Plaquenil at one tablet, 5x/week without any trouble. 

My last appointment was in December. My doctor wrote me a prescription for Myomycin, in the hope that I could take this drug in place of Azithromycin, without the horrible emotional side effects. So far, so good with this medication! I took it once a day 3x/week for the first couple of weeks, and having had no noticeable herxing or allergic reaction, I have now increased to one tablet 5x/week.

In the new year I will be switching to another doctor in the clinic, as the doctor I have been seeing is decreasing his patient load. I hope to get an appointment to see her in February and look forward to the fresh perspective of a different doctor. I hope that she can help make sense of my Lyme Disease diagnosis puzzle! 2014 is looking to be a big year for me. I am hoping that I am well enough come the end of the year to attend my younger sisters wedding in India! Before that, all going well, Caribbean Pink will get up and running, and I will likely be having an operation on my "dodgy" (to quote the orthopaedic surgeon) left wrist. There are still some issues to be sorted out in terms of being operated on, and going under general anaesthetic, with my health problems. I also hope, at some point, that I have some answers as to whether I will be adding Chronic Lyme Disease, and one or more co-infections, to the list of my confirmed diagnoses, alongside my connective tissue disorder, or whether perhaps, there is something else at play.

I hope that 2014 has started well for you all! I will try to keep you updated a bit more consistently in the year to come :)