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It's ok Pinga, the issue was this was way too rushed. They told me this summer it would be at least 8 months waiting and maybe over a year. Then they spring this up on me, they haven't heard from my hematologist (who goes out of town often), I have a bunch of appointments yet my pre-surgery appointment where I can actually get my questions answered still isn't booked and the earliest I could get in to see my GP was the day of the surgery (forms from my last physical are needed). I would also be in the run in phase of the clinical trial. I don't know the time for Chemguy to take me home, and I assume I need to be watched at home for a while to make sure I'm not having an attack, and have no idea how many days off work he would need for that.

I'm happy to put this off and actually not rush to get everything completed in a few weeks before being hospitalized :)

Pinga, Chemguy has some of the same issues when it comes to work socializing in Northern Alberta. Hopefully you were also able to have a good conversation or two while there though!
 
Hugs to everyone who's had a bad day. Mine was fine; just long. A full day of work followed by a longish (for me, anyway) Board meeting, which I have to chair another four of...not that I'm counting. Pinga, I'm sensing more that you are moving yourself emotionally towards retirement. I think you will enjoy being able to choose which relationships you work on. (And water groups are much safer to navigate in than beer groups...)
 
Good news, I had a great dinner! Chicken and garden potatoes and broccoli done up with lemon, garlic, rosemary and oregano. I think we actually did something similar for Easter this past spring. Chemguy doesn't remember, I recall it being really good, maybe it was turkey breast. Today was probably pretty close. Chemguy wishes one of the sides was done differently, but when it comes to those flavours I can't get enough!
He had a few phonecalls about my stressful day, so picked up a dessert with a bunch of fruit on top. No idea what it's called, but it was delicious!

I also had a good chat with my Mom just to talk through things as that's not Chemguy's strength. Good to talk to her (sometimes! :P ) they have a downed tree from all their snow! We got a fair bit one day, but it stopped and most of it had melted as soon as hitting the ground anyway. I'm looking forward to getting the warmer fall weather again soon.
 
Bette, i can't say what is going on , and the levels of challenges; however, suffice it to say, that if I weren't so close to retirement, it would be much worse.
 
Chemgal, it must be frustrating and exhausting dealing with the various aspects of your health


I can't remember if you worked before. Outside of the home. Does your training or education help you cope?
 
I've been a student all along, but I was a TA and worked summers before grad school (year long) as well as in high school and the first little while.

My education helps quite a bit, while it isn't medical I have the basis to understand all of the medical stuff. I can pick up a journal article and might have to look up the occasional term but otherwise understand it. It makes some of the FB groups frustrating at times, as people post an article and draw completely wrong interpretations of it, or just make really odd suggestions. Many don't understand the difference between the active protein complex that is too active in us (C1 complex) and C1-inhibitor, which is lacking in either quantity or quality and is the reason why our C1 complex is always on.

I am frustrated with what to do once I can get into a more normal, long-term routine. When deciding on a career path most don't include a plan about what to do if they are diagnosed with a life-long serious condition. I don't know if I'll ever be able to work a full-time job in my field (or any field for that matter). I don't know if finishing my degree is worthwhile or if going back is just going to result in too many attacks. I at least have some ideas for at least a little while, and maybe they will work out long term. I don't want to implement them before I either graduate or quit my program though.
 
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If people just have the number of medical appointments that I do, let alone the symptoms and fatigue, are they able to work full-time?

I just dealt with a pharmacist who's annoyed because I didn't call him back near the end of the day yesterday like I said to verify he received a fax. I didn't call, as I was on the phone with my oral surgeon's office at that time and the pharmacy closed before I was done with that. The pharmacist still hasn't received the fax. I initiated the request for the medication on Aug 14!
 
I find most people in the discovery or crusts times tale a leave. It is hard for everyone involved especially if intermittently able to work over a long period.

Tough times, Chemgal
 
More time in the ER. This time, just because I couldn't get my IV to stay (got it started, needed that help with the tape) and Chemguy is working out of town. Frustrating, I waited to see a resident, which I don't need. They are supposed to be me through to a nurse right away, but the ERs don't seem to like to follow the instructions in the letters. At least the resident determined a spot - not even a stretcher this time, I was at the triage desk because they couldn't find me a spot. Surprised me as the waiting room was fairly empty. The nurse I had was really good though, and he was willing to use my needles which are nicer than the ER ones.

Chemguy will be gone for my next dose as well. Insurance still hasn't gone through for home care, but I think I'll set things up earlier and just call them anyway if there's a problem. I can try help from a neighbour as well, I just felt like by the time I had tried to get things going myself today, it was too late, especially as I showered first to get my veins up so needed to comb out my hair - which I swear takes longer than washing it! and get dressed before walking out the door!
 
Can you have an advocate who can organize your appointments etc. Would anyone par for

this to happen?
 
I would love that Crazyheart. It's so frustrating to get home from one thing only to find a voicemail stating that my next appointment has to be rescheduled! And of course they take lunch off and close at 2, the line is busy when they are open and they don't take messages so good luck getting a hold of them to reschedule!
There doesn't seem to be any help in dealing with these things though.

I asked the pharmacy about their wonderful med organizer - just ask us! Is the advertisement. It's just a pill holder. Doesn't help with meds on a PRN basis, IVs, eyedrops, nasal medication that goes into a saline rinse, mouthwash, etc. I asked about organizational tools and they had nothing to recommend. Nothing to make sure the prescription I requested almost a month ago is actually received for when I need it.
 
Chemgal-I know it feels like forever but it's not. You took this year off grad. school. You will get your condition under control and feel you have a life again. How long has it been since your diagnosis? How long have you been doing home IVs? Not Long. Change and management take time and yes-managing youreslf medically is taking most of your time and energy these days. It will get better.
 
Tabitha, I am feeling much better about the diagnosis. It's now just trying to incorporate everything into normal life again :)
Maybe one day I can go back. There are things to think about though, like I have suffered for sore throats for most of my life, I just didn't realize they were serious. They weren't always constant, but occurred often enough. It will take time to treat those every time one pops up. Employers probably wouldn't be too happy if I have to go hang out by an ER just in case. I also don't want to be pushing myself to that point now knowing the risks, especially considering how much worse it's been the last few years.

With just the medical appointments, I keep having specialists added on, and once in they want to keep me coming just to follow up.

It all starts to add up and won't fit into my old normal life, even if I do continue to improve.
I will find a new normal, it's just scary not knowing what that will be and it possibly being a major deviation from what I had planned on.

I'm not making any rash decisions. My supervisor's suggestion has been to quit, and there have been times where I've considered it, but I feel like it's just wrong to make that decision at this time when I don't have to and might regret it.

My posts probably sound more negative than what I feel - it's just a certain aspect I'm negative about, and then the medical system drives me nuts at times. There's quite a bit of positive going on too! :) I feel stronger in the exercise classes. I feel like exercise is something I will be able to manage once it's over. I have frustrating times with the IVs, but overall I know what I'm doing with them. I think everyone who self-infuses has bad days with them. I need less sleep than a few months ago. Before, I was struggling with what was happening in the moment. I'm doing much better now, although there are still moments. Now I'm struggling with the future, but it means I can at least look past the now because I'm doing ok with it :)
 
You do sound more cheerful in your last post Chemgal and yes it is-and has been a major adjustment.

Glad it is the weekend here. I have some quilting to do and I signed up for a graduate level course on Pilgrimage-by distance ed. I have the rest of the 1st lecture to listen too and some reading in Pilgrim's Progress to read.
 
@Pinga - I just finished watching "Unfinished Song" - what a wonderful recommendation you made for me! Thanks. Vanessa Redgrave & Terrence Stamp - stellar pairing. Tears, laughter, sighs, family life and death ... excellent movie.

I'm "home alone" this weekend - blissful peace & quiet that I'm enjoying. A long walk after work yesterday. Was in & out last night to see some Northern Lights in the overhead sky - faint, but yes they really were there! To market this morning for fresh fruits & veg - I do love the harvest season. Some overdue housecleaning today - so much filthy dirt in our house this season from the water & sewer main replacement work that's going on. Movie, reading. Tried a new product from our local 'health food' store (do they call them that anymore?) "Meal in a Jar" - product line initiated by a young couple in Kitchener - absolutely delicious! On Thurs I had "Paleo Hero Chicken Salad" and tonight "No Butter Chicken" which I heated in the microwave - both were fantastic! Fresh organic ingredients all layered into a jar - $10 for a full and filling healthy organic meal. Off to church in the morning, after a good sleep with nobody snoring beside me :) As a temporary state, I like this ... probably not so much if I was alone more permanently.

Hugs to all my roomies here at WC2! I've left a nice bowl of dark chocolate covered raisins on the table by the window ... enjoy!
 
I spent much of the weekend with a couple of friends formating and going over every detail of my novel to make sure it is as nearly perfect as possible - then I promoted it at our church's Welcome Back Sunday where our Writers' Group (among others) had a table in the gym during coffee time.
I'm still on a high. I would like to use a picture of an Inukshuk on the cover. My friend is looking into it but says there may be complications due to many pictures found on the computer are copywrited. And time is of essence. We may use a generic picture of the Arctic on the cover.
 
Seeler said:
I spent much of the weekend with a couple of friends formating and going over every detail of my novel to make sure it is as nearly perfect as possible - then I promoted it at our church's Welcome Back Sunday where our Writers' Group (among others) had a table in the gym during coffee time.
I'm still on a high. I would like to use a picture of an Inukshuk on the cover. My friend is looking into it but says there may be complications due to many pictures found on the computer are copywrited. And time is of essence. We may use a generic picture of the Arctic on the cover.
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Generally, taking a picture from the internet and putting it on a book cover would be plagiarism. It would just be easier to get a picture you own the rights to. You could take one yourself, or hire a photographer for this purpose (note that this would be very different then using a picture for your personal use) or you could illustrate one or have someone do this for you.
If you wanted one you find on the internet, it might be easier if it's from someone's blog - easier to find out who took it and if they will give you permission to use it.
 
Greetings All!

It was too overcast here, Carolla, to see the northern lights, but they are supposed to be nice tonight. I just looked out a bit ago, but I think it was too early. Going to try to stay up a bit and check it out later.

It was a sunny day today, not overly warm, but nice. Church, lunch, visit with family, visit with a friend, and a lazy evening.

A new week is upon us. A busy week with a few responsibilities and commitments. How does your upcoming week look?
 
Thanks for your suggestions but I think to be effective it has to be against a bleak, cold Arctic background - not something I can come up with right away. I wish I had thought to look earlier or make arrangements to have a friend paint a picture (perhaps after looking at the various pictures on Google), but time is of essense right now. I haven't talked to my technical person today (he's not a morning person) so I await his opinion.
 
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