A Treatment Diary

[Guest ~Sammi~]

Zebracakes!! Chickenboots and Meercatpumps

Ive been posting a lot of information in the other thread in regard to information on The Hepatitis C Virus and Treatments (from this point on referred to as Tx's) and I thought rather than get everyone all discombobulated I'd start this thread here and use it as a treatment diary if no-one has any objections to that. That way the actual facts of Tx's and the virus dont get confused into one thread with whats going on on my own personal journey.

Ive had a lot of people in chat and quite a few of the caring moderation team here on site asking me each day how I am and how Im coping. The care and empathy and support that even I as a senior member of staff get back from you all here never ceases to amaze me. We get to know each other over time, you all trust us mods with some of the most intimate things in your lives, secrets, guilt, hopes, dreams, aspirations, first time experiences, tears, laughter, tantrums, highs, lows and for some members even at times crisis's. My heart breaks every time I see one of our members enter a crisis room and that is something that I personally have to deal with each and every single time it happens. I have to put that pain aside and do everything in my power, using every bit of knowledge I have, scowling every millimeter of the internet, using every bit of my compassion and my understanding to give that member whatever it is they need to show them how (although tough) truly wonderful life can be, how quickly just a tiny spark of hope can blossom into the most beautiful flower. To give them the support, confidence, the belief and the knowledge that yes there really are people out here who care and want and can help and yes with a bit of hard work, a bit of planning, a bit of patience, but most of all a belief in yourself and the choices you make and a willingness to try, truly, I mean truly....anything is indeed possible! My entire life consists of the impossible.

People may ask "why is Sammi posting all of this here?" Well my first response to that is "the giraffe has a mobile phone!" and my second response is to say that there are a couple of reasons other than the fact that the giraffe has a mobile phone. Seriously though (is that possible? serious? ) I first contracted the HCV through drug use over 15 years ago. At the time someone I trusted gave me a used syringe, I didnt know it had been used nor that it had been used by someone with HIV co-infection. I was fortunate not to get the double whammy. I continued to use drugs and didnt take the virus seriously and within 3 years I had was was diagnosed as acute drug induced liver toxification. What does that mean? My liver was so overloaded on un processed poisons that it just shut down. I spent a week in intensive care an another month or so recovering from the other medical ramifications such as ascites and kidney issues. Mind you that didn't stop my then partner from bringing me drugs even while I was in hospital. I was an addict there was no denying it after this. I continued to use drugs and abuse my body at a voracious rate and within two years was back in the same ER with exactly the same diagnosis. This time my partner was away out of town this was their opportunity to try to help me. It helped. I have been clean from hard drugs now for over ten years

I have put this here to help show the journey to recovery, which I still face more than ten years after giving up the drugs. To show that no matter how rough or bad thing get that things always get better. I have a 6 month journey ahead of me on these treatments and to be able to share that journey with you all as you share your lives with us is a privilege for me. Please at anytime make comments or ask questions and I will get to them as I am able to

Hugs

Sammi

[princecharmless]

darn moaning guinea pigs

[Guest ~Sammi~]

Stu

[princecharmless]

I love the chat rude word filter sometimes

[Michelle 2010]

I love the chat rude word filter sometimes

Why, was it supposed to read "morning" guinea pigs???

Best wishes

Michelle

P.S. Sammi, you make a wonderful case for the "return me to sanity" part of step Two... I kinda had a hospital experience you just reminded me of... something about cow patties and psychedelic mushrooms

Maybe I'll use it at the Sunday night meeting...

[Guest ~Sammi~]

Why, was it supposed to read "morning" guinea pigs???

Trust me you don't wanna know lol it's a follow on from my complete and utter random attitude I just love the randomness of a random random comment Go ahead I give you permission to call me strange

[Michelle 2010]

Trust me you don't wanna know lol it's a follow on from my complete and utter random attitude I just love the randomness of a random random comment Go ahead I give you permission to call me strange

Hmm, I'm showing my age here but you may have been a good candidate for Ken Kesey and the Merry Pranksters

Never heard of them? Read The Electric Koolaid Acid Test. You're either on the Bus or off the Bus... and believe me, I think you are ON the Bus (Btw, thats a complement )

Michelle

[Guest ~Sammi~]

Madcow can't affect me......coz im a goldfish!

Ok so time to fill you all in on the last two days......

Monday: 04/04/11 3rd Injection Day

I woke up on Monday not feeling too bad, the fatigue wasn't as bad as it has been the last few days and I was pretty much ready to face the world...which was prolly a good thing considering it was Liver Clinic Day and my lift had canceled on me which mean getting into the Hosp by public transport. It was a really nice day and so off I go....

Sitting in the hosp waiting room I noticed this young lass come into the clinic, speak to the Receptionist and then sit just in front of me on the row of chairs. She said something to me, but even now I still don't know what she initially said, and when I looked up and said excuse me, she asked...."are you on the Interferon Tx's, how are you coping with it all?" So I began explaining how I'd been dealing with things and how I was coping. We talked for about 15 minutes before I was called into see my NP (Nurse Practitioner) She was still 4 weeks off starting Tx's and so I offered her my number for any support she may need.

I saw my nurse who seemed quite happy with the way things were going and the fact that I was feeling pretty good, and then gave me the slip of paper for my two week tests, just general tests, FBC, LTF etc, the first comparable PCR and VL tests will be done when I see the clinic in two weeks. They say not to get your hopes to high for the first comaparable tests but Ive been in touch with a lot of people on treatments and the first test can be a good indication of how you are initially responding to Tx's. So Im kinda looking forward to that 4 week mark.

I came home and just relaxed til around 3.30pm when I finally had that 3rd injection. Logged into chat for a while and an hour later KAPOW! I ended up on the bathroom floor shaking, not able to get up coz I was so dizzy, throwing up, and just generally feeling like the world was coming to an end, an hour later I dragged myself out of the bathroom said good bye to chat and passed out in bed for a few hours. I woke up around 4am and felt fine just completely exhausted

speaking of passing out, I really need to do that about now, so will finish tuesday when I wake up.

Sammi

[JJ]

Take care of yourself Sammi.

I'll check back to catch up on the finish tomorrow.

JohnJ

[Guest ~Sammi~]

(There's no single wave emote) Heya everyone.

Tomorrow night the pumpkin is turning pink for the dance.....

Ok so I said Tuesday and it's now Friday, my sincerest apologies. Trust me it's been one huge week to say the least, where do I begin? Monday? Nope ok done that. Tuesday then. Here we go.....

Focus Sammi Focus! Ohhh loook Shiney's!!! .......SAMMI! FOCUS!

Huh?

Ok Monday? Is that right? No ok Tuesday! Hang on I'll just put it here in big bold letters so I don't forget.

Tuesday 05/04/11

ok so 10.30am romps around pretty fast, and right on time my front door bell rings, I check my security camera and see its the nice lady from HACC (Home And Community Care) come for our appmt so that she can assess my home care needs. She really was the nicest lady. She stayed a few hours and we talked and she assessed what I needed, what I can and can't do, where I need help and where I don't. I was pretty tired when she arrived but as time wore on, I was just being drained more and more and more. She had a look around my house suggesting things and noticed that I still had washing on the line, "Oh here let me get those clothes off the line for you." I protested and she insisted and I really was grateful..........until I remembered what was hanging on the line.

The Light Globe Was Scared So Much It Turned Into An Orange

(Sorry that was random for "dang it my internet just went down again and this time its not hiding in the fridge")

Ok So does that mean we are up to Thursday?....No? Oh Right...... What do ya mean we are still on Tuesday?!...Oh Ok.. Sorry!

We can all figure out what was on the line...Remembering that I present as male now. So while I was doing this and this she didnt miss a trick, as she came in through the back door she opened with "You know what I prefer....." yeah well anyway that got another conversation going that lasted about an hour, and TRUST me you don't wanna know where that chat went. (Dont even ask). Before she left she told me that she had to go back and write a report recommending that someone come in up to 3 times a week to clean and help with my washing etc, OH&S and Physio to come in and assess my chair in looking at a more ergonomical chair, PhysioTherapy in my home twice a week, a driver if and when required, shopping assistance if required, prepared nutritional meals delivered 4 times a week. As she was leaving she handed me her cell number and said "Sammi, I don't normally do this, but if you want or need anything 24 hours a day, call me, your tenacity and attitude have really impressed me". That kinda rocked me a bit. I didn't expect that.

Im still a little funny and weird-ed out about the idea of people coming into my home, even if it is to help me. Im a pretty independent and private person, But I know that over the next 6 months and 6 months after while the treatments leave my body things are going to get pretty tough at times, I may still have enough energy to push on at times at the moment but that can change at any point. I know that even now at times I need help, and that really has to over ride me being weird-ed out

Wednesday 06/04/11

I finished my shift in chat around 9am my time and I remembered that I was sposed to go and see my friend in hospital that day but oh geez I was just soooo tired, no not tired, thats not the right word, Bone weary soul flattened exhausted. There thats better! But then I got another wind and decided that indeed I WAS going to go down and see my friend (I really dislike breaking promises), so I get ready and off I go by bus train and foot. Two and a half hours later I walked into her hospital room and just collapsed on her bed while she pranced around the room doing her make up getting dressed and yapping at 368mph the whole time like she always does. There was a tornado in my head just trying to keep up with her. But she is a real friend and her and I could talk about anything and I'd move the world for her if I could, so I put on a brave face, dug up some reserves of energy only superman wearing neon green shorts and cape knows where I got that energy from, and didnt it turn out well that I did?

bbs gotta go and lay down........

(3 hours later)

Ok Im back but I can't say for how long. Im trying to push through the exhaustion at the moment. My mind is wide awake but my body is screaming at me to just fall down, but anyway......

My friend had been telling me about a nurse that had shown an interest in me, apparently my friend was raving on about me and showing photos around only god knows why, and apparently she's been running back and forward between me and this nurse trying to set us up for days, well we finally met on Tuesday. I was instantly taken by this person's genuineness and gentleness...

Im so sorry I have to go back to bed.....

(2.37am Saturday Morning)

So.....I asked "Paul" if he'd like to join me and SparkleyStuff (My name for my friend) down the road for coffee as he was just about to finish work for the day (I didn't know at the time but he had another date to go to which he politely called and said he was going to be late) So "Paul" joined us for coffee not too long after.

We sat out the front of the coffee shop because SparkleyStuff wanted to smoke, they were really long tables out the front because all of the tables were taken we asked these two young guys if we could share the other end of theirs, "Sure they said"......then SparkleyStuff says "Well I'll sit on this side of the table so you two can sit together" Yeah thanks Sparkle, that was subtle. I didn't say that but I certainly thought it, all I could do was grin....widely. We all ordered coffee (which took an eternity to come) and before we even got them Sparkle was off again saying "I'll leave you two here to talk while I go across the road and buy some nail polish" this time I did look at her and said "Real subtle sparkles real subtle"....up she jumps and away she goes leaving me and "Paul" just looking at each other laughing.

Ok so have I been talking for too long? Is this post too long to post yet? Hmmm Better post it. will finish it all up soon.

Hugs

Sammi

[Guest ~Sammi~]

and believe me, I think you are ON the Bus

I like bus rides

[JJ]

Sammi did I ever tell you that I love your posts? I do.

Thanks for sharing and yea for the good news on the help you are getting. Most of the people who do home help have seen everything there is. Twice. It is a high compliment when they say something like that to you because they are hard to impress to. At least the ones I have dealt with over here and I assume that they share a lot of common traits. The procedures may differ some but the job and the type of people who do it are the same.

Looking forward to hearing more about "Paul"

Hugs

John

[Guest MichelleD]

Sammi,

Thank you so much for your posts. I have enjoyed reading them. You are amazingly strong. I thank you for all your hard work. You have helped me through a few hard times as well. I will keep you in my thoughts and prayers (if you are religious).

Hope you feel better soon,

Michelle :-)

[Guest ~Sammi~]

I AM trying to get back here to finish last week but things are very slow atm (including me) please bear with me.

Thanks

Sammi

[Guest ~Sammi~]

Greetings and salutations, aliens, washing machines and road-trains!!

Wow. I can't believe it has taken me so dang long to get back here to finish what I began.....how long ago? Im too confused to recall! OMG has it really been that long? Geepers!! Gosh dang it how time really does fly by when your just too dang tired and sick to do anything. Until today the last week has pretty much seen me stuck in bed for a week or so, with the odd head pop up here and there just to reassure people I am actually still alive lol. Its been a hard road so far with I know a lot more to come yet, But today sees me 6 weeks into Tx's and I aint looking back for nothing.

Ok so "Paul"........(mumbles, grumbles, moans, whines and complains)

ok so basically what happened was "Paul" and I spoke once or twice by phone and skype and he asked me if I'd like to go down to his place on the upcoming Saturday for dinner. I was going down that way to spend that day with my friend sparkleystuff anyway and so I accepted and was really looking forward to the day. SparkleyStuff was over the moon, she was all excited for me, and took me out on Saturday and we had a really awesome time. Once again this silly girl spent a bloody fortune on me, making me "passable" in her opinion for the date tonight. She was determined that everything was going to be perfect. She has great taste!! Unlike me. So 4pm comes around and I head back to the front of the hospital to await for "Paul" to pick me up.

Well I sat there in the ever cooling sea night air for an hour (definately not good for someone with a supressing immune system)........

Hang on I need to get this out....

The Big Race Car Was Really A Blue Gorilla!!

ok I feel better now!

Ok so by 5pm I decided to turn my phone off and head home. I sat and waited for long enough.....I had been stood up, for the first time in my entire life....me? I had been bloody stood up!! Can you believe that?? I certainly couldnt. Pffft. The trip home took 2 and a half hours, most of that time was spent on a packed train with hard core football supporters on the way to the weekly game here in Perth with the whole time me in a corner trying to just vanish in the crowd and with tears behind the sun glasses that I was wearing.

So I got home and checked my phone and there was a message sent well after I had left with some poor excuse. I replied and we spent the next two hours chatting on a video call on skype. Again he asked me to go down the following day which I initially agreed to but after the video call was over I just knew that going to his place the next day was a really bad idea, there was just something, I can't describe it, but in the end I really got the impression that there was something really creepy about the whole situation. I spoke with my mod collegues and by the end I was convinced that I shouldn't go. so the following morning I rang "Paul" and told him I was just too sick to go. He knew that I was on Tx's and knew that I could come down sick pretty fast and so I wasn't too concerned that he wouldn't understand. We spoke briefly by phone for me to offer my apologies and I didnt hear from him again for 3 or 4 days when out of the blue I get a text message

"You being sick the other day really scared me, so I think we better call everything off"

I mean like...hang on....this guy is sposed to be a nurse? Am I missing something here? Oh well personally I think it was for the best. I mean, really....for the next (now) 5 months during Tx's and the 6 month recovery while it would be nice to have someone there to cuddle with and support me in that way, I really don't think it's fair to ask someone to face that with me at this point in time.

Why is that Mouse screaming at me?

oh! my mistake, it's yelling at the coconut tree!

ok. I really gotta go and rest a while. Im totally wiped out yet again ( today was injection day and Sx are really starting to settle in ) so will DEFINATLEY write some more on the morrow.

Hugs and loves

Sammi

[JJ]

Hug!

Sammi, I'm sorry it turned out that way. You deserve someone better hon.

If my wishes and thoughts make a difference you'll be finding someone new and super supportive any moment now.

Hope those SX start to subside for you.

Hugs

John