Update to yesterday's post

Gabapentin is still kicking my butt, but I've begun kicking back. The incredible dozyness has eased up to just a general groggy feeling of my head being filled with cotton and lead weights. No other changes so far, but it's only been 2 days since I began this treatment.

The lesions on my legs look like they've faded to me, but the hubster says they're still the same.

Lesions on lower left leg above ankle December 31, 2011

I'm still in pain. Today it's my back at about bra level.

And now, let's add insult to injury and add the comeback of the rash on my arms! Why the hell not? 

Left arm above wrist December 31, 2011

Right Arm above wrist December 31, 2011

Right Arm above wrist December 31, 2011

I found out today that the hubster is not so confident about me getting trained to calculate insulin dosages because of my problems with numbers and calculations aka dyslexia. I invited him to come along to learn  it too, but the horrified look I got quashed that in a hurry. I'm pretty sure if I write it all out, along with whatever method is used to calculate the dosage, that I can follow it for the next time. And since I'll be doing this every night, I have a feeling that I'll remember how. And if I don't, I can get the nurse to teach me again and when in doubt I can always fall back to my basic dose.

New thing

Not a clue as to what is causing this.

I noticed it last night when I went to sit on the couch to continue crocheting. There is no pain associated with the lesions. Cannot figure out what is causing these or if it's just more crap associated with fibro and neuropathy :( These are located above my ankle on the inside of the left leg. I checked my right leg at about the same level and there are only a few vaguely visible spots.

December 29, 2011

December 29, 2011

In other news, Gabapentin is kicking my ass royally.
I took my first dose last night at midnight, crawled into bed at 1 am.
Crawled out of bed at 10 am feeling like I'd been asleep for ever. Everything hurt! joints, muscles, everything! What didn't help is with all that, I was fighting to stay awake, couldn't keep my eyes open and kept dosing off. Great you would think, but not so great when your body won't allow you to lay down and reminds you that it's in pain every few minutes.
I felt like my brain was filled with fuzz and wouldn't think past the next few minutes and most of that was telling me to go to sleep. I ended up sleeping in short naps of a couple of minutes woken up by pain; head lolling on the back of the couch, not good for neck :(
I finally came out of the fuzz around 8 pm tonight. I sure as heck hope that it won't be a repeat of today when I take my next dose tonight :(

Here we go again

Saw my doctor December 28, 2011

After some discussion and checking reactions, etc... we're now going to try Gabapentin in coordination with amitriptylenes and hoping that they will take care of the migraines and mood swings so I can eventually get off amis.

• Blood pressure has bottomed out again. 103 over 69 yea me!
• Blood work results:
• my cholesterol as perfect
• my iron is still rock bottom
• B12 has climbed slightly
• glucose average is a bit higher than it was .076 which considering what we've been eating without a choice has raised my blood glucose average Boo! :(

Meeting with the nurse on Tuesday to discuss averaging insulin looking a day ahead to get better tighter control of the blood sugar levels.

Pharmacy has just delivered the new meds.

I'm taking my first pill tonight.

If I have no adverse side effects after a week, I'm to increase to 2 pills per day, 1 at supper, 1 at bedtime. Depending on how sleepy they make me, otherwise I will take the 1 at supper earlier in the day. Time will tell. Just hoping that I don't turn into Angelzilla again. That wasn't fun :(

With going back on amitritylenes, I feel more tired every day, sleep badly at night, hurt more everywhere, getting jabbing pains in various areas of my body and the chest pains have come back, but not as insane as before I started on Tecta. Also means I have to be super careful of what I want to accomplish in a day, otherwise I run out of steam and then I'm done for the nest 2 days... like 2 days ago when my children came to visit and I was cooking turkey, potatoes, carrots, prepping the stuffing, etc... My daughter was helping me thank goodness, but it still wore me right out. Yesterday I was a wreck, this morning I woke up hurting so much I couldn't go back to sleep :( Hoping that I will sleep tonight with the new pill.

The cold weather is not helping in the least. I think I'm also developing a bit of a cold. Sinuses keep filling up and I've begun coughing, but not the same cough I had before I got on Tecta!

Post Christmas

Yesterday was fantastic. 

Karen and Adrian came (his plans fell through for the day)

Ken was here too for his birthday.

He brought a very special friend with him. A really lovely 3 month old shepperd mix whom he's named Bella after the last dog we owned as a family who was my very special girl. Her temperament is lovely, calm, loving and trusting. Not bad considering my son rescued her from an abusive situation. She adores him and follows him everywhere. She accepted everyone in the apartment as part of her family. 

At one point in the evening while we were eating supper perched on couch, poof or coffee table, she came and laid down on my feet just like my Bella did so long ago. I didn't realise just how thin the skin was over the scar that was left when Bella died until she did that. She will be a wonderful dog for Ken.

The turkey was fantastic! Everyone loved it. :)

Gifts were given all around. I had spent the past 2 days crocheting gifts for everyone. I made star washcloth/dishcloths for Ken, a hand-towel she can button onto the fridge door or wherever else she wants to put it and a star cloth as well. We gave him 10$ cash and also a tiny skull for Ken, the type that you put out a cigarette in? for his birthday. And I ended up making a baby dragon for Adrian. Thankfully everyone loved what they received.

Karen & Ken gave us 2 games and 3 dvds. 

That day wiped me out. I was exhausted by the time everyone left. But it was a good exhausted.

Mind you, I'm paying for it today! I went to my doctor's appointment to get my B12 shot and my doctor switched my meds again since the noro's dismal failure, we're going to try something different. Hope these work.

Christmas

Christmas turned out to be ok for us.
Despite the lack of money, gifts, etc.. it went quite well.

We were given a turkey by someone whom I met during the McMaster class I took in the fall. I'm saving it for tomorrow since both my kids will be here and my son's birthday is then too.

We still had a ham in the freezer, purchased 2 years ago. The last 2 years either I or husbster were too sick to enjoy food or Christmas. So finally this year, the ham came out, was cooked and eaten and it was delicious!

We also received Christmas presents from Samm and Shay.  All were lovely, appreciated, and thoughtful. :) I hope they both understand how much we appreciated these gifts. Some made us laugh (windup Santa in a ball) and some made us sight with relief since it meant one less thing to buy.

I am glad that I'm back on amis. I don't give a rats arse frack that they lower my blood pressure. I do not want to meet Angelzilla again! That was not good. :(

Rash on my arms is back, well, sorta back. It comes and goes from one hour to the next. Go figure.

Looking forward to tomorrow.

Off the noro

I'm off the noro again. That was a train wreck :(

New meds trial norotriptylene

Went to my doctor to discuss pain management and try and get off the amitriptylene.

After double checking drug interaction since I am on other medication for the other various health issues, we settled on trying Norotriptylene to see if it could replace the amis.

After a week, my personality went from loving, patient to irritable and mean and angry 24/7. I almost lost my darling husband to this medication. It also did nothing for the migraines as I began having those again. 

The only plus side to the medication is that my blood pressure which had been at 103 over 69 had gone up to a normal level of 123 over 79. 

I did not even realise that I had changed so dramatically and now that I'm back on amis, I have trouble remembering those days.

I wrote notes to myself during this period mainly because I couldn't understand why my husband kept saying that I was always angry, looking for a fight. I'm including these notes below to remind myself how much medication can affect the brain and not always in a good way.

December 16 - Who gives a fuck!!! :(

I'm so tired of being accused that I'm argumentative or cruising for a fight when I'm not!!!

I don't feel angry, Just sad and disappointed...

I, apparently, do not remember what I said 5 minutes earlier. Although I had to repeat it 4X! And this time, I tried very hard not to sound peevish, but on repeat #4 my patience failed.

I hate that my intelligence / knowledge is constantly questioned for accuracy. I may be 50 but I'm not stupid or uneducated!!!!

December 17 - Am I at fault for all of it?

I'm pretty sure I'm not but I could be wrong. (I've been told I was wrong for most of my life) I know it sounds like I'm pitying myself. I don't.

I just putting my thoughts on paper. I want to make sense of these things. I want to fix it if I'm at fault.

Is it because my answers are perceived as peevish? argumentative?

But when I go back over what caused the fight, I don't start off that way.

I get a little miffed when I have to keep repeating my answers because we're not in the same room. It's either that or I have to get up irregardless of how much I hurt, walk over to the other room and repeat my question/ answer again. By then my patience is pretty well gone and I"m accused of starting a fight which was not my intention!!!!!!!

Both of us being in pain doesn't help.

We both have shorter than average fuses... I think...

I'm just tired of always being in the wrong.

I have to go back on amitriptylenes!!!!! With those I don't get as emotional. I just feel numb most of the time. Maybe all this will stop then or I won't give a shit :(

December 18 - Kiss & Makeup

He apologized last night and so did I since it takes 2 to have a fight, although it didn't feel like a fight to me. I still feel sad.... he was quite worried that I don't love him anymore. I do love him, very much. Once the sadness goes away again, I will love him even more.

I hate our situation. When will we have peace?

Our needs aren't unreasonable!

Enough money to pay rent, phone, internet, food and once in a while a meal out or a movie. I don't think that this is too extravagant, too much to ask for.

I'm so tired of all this.

The constant battling for food, the food banks that hardly give anything since they have nothing to give out. I so hope the Christmas hamper will be decent. 

Right now we have nothing for Christmas. 

No tree, no decorations and honestly it doesn't feel like Christmas at all. 

What is there to look forward to???

Not a damn thing!!

December 20 - 

Meeting Samm tomorrow, I hope, as sad as it sounds, that she will buy us some groceries as Christmas presents. We can use the meat potatoes, veggies & fruit.

Karen & Ken should be coming fo a visit on the 27th... I hope. Depends if Karen gets that day off. Ken's birthday.. 26 years... I'm getting old and I hate it! I have nothing to show for my 50 years of life.

Going to see John McDermott @ Hamilton Place on Wednesday. George's treat.

I hope ODSP accepts my claim. At least the rules are not as strict as with OW and apparently I will receive more money.... I'll believe that when I see it.

Have to declare bankruptcy soon. Opening a bank account at Desjardins tomorrow. Hope they don't deny the account. Have to switch OW and EI asap. Hopefully will be able to take what money we have left in TD account and move it to new account. Keeping fingers crossed for tomorrow.

Watching LOTR again... been 4 months.

December 21 - 

Parrot commission almost done. Just need to sew feet on. Box and ship asap. Going to friend of a friend who was recently diagnosed with aggressive breast cancer, the big bad C word. She is having surgery in January 2012. I hope she lives.

Working on carcoat for Samm, coming along nicely. Late Xmas present.

Must assemble elf pattern, write it and publish on Rav. How to get sales!!! Money saving for computer for hubster so I can have the old computer. Tired of writing patterns out by hand or waiting to work on them when I get computer. Or paying money to have them printed out. Wish we had a printer ;(

Love love love Samm's shawl she made for me! Keeps my shoulders warm without pain. Fabric is nice and soft, filled with sisterly love. I can feel it when I wear it. Perfect for what I wear too!!! 

Voicing Hamilton class done. Hoping to get zine off the ground before January 11th opening @ the Freeway Cafe. Need photos!! No one has posted any to the blog except for me :(

Haven't heard back from Jeanette if we have permission to use McMaster logo for zine. Hope she can. Will give it more credibility. Have to toss mockup together over this week.

Opening a bank account anywhere is out of the question now. My credit rating is minus 1000 or it might as well be. So we'll be switching to receiving cheques in the mail and cashing them at a bank, not TD. and we're going to have to pay for everything with cash only. 

My love for my city

Hammertown, what a city!

I finished my class with Mac (not using actual city name or university name since I don't want traffic to this personal journal) Loved loved loved loved it!!! Graduated Saturday past! Felt amazing to see people actually caring about what we all did. Some of the students in the class did some amazing stuff, but not just project wise, but also in their own confidence and feeling good about who they are.

I am hoping to continue as a student even part time with assistance since I still have 0$ to attend regular classes. I would so love to do this, it would be a dream come true for me. To be able to get a university degree in something that really interests me would simply rock the casbah!

On other fronts: doctor's appointment today.

Rash was on both my arms. Finally! Showed it to my doctor and after poking and prodding it and pinching it and asking questions like does it itch? which of course I don't feel because of the autonomic neuropathy. All I feel is a slight weight pressing on my arm where the rash is located. My doctor concluded that chances are pretty high that it's the autonomic neuropathy that's making my skin do weird things to itself. Goes hand in hand with my skin feeling like it's on fire, or that it's being striped off with a piece of glass or that I'm walking on broken glass or embers. I also love that I get pain messages telling me that my back is being scoured with a brillo pad which hurts! So let's cheer autonomic neuropathy on! One more way to screw with my mind! LOL

On the other hand, blood work results were actually much better than I expected. Considering we're surviving on food bank donations, the quality of the food we're eating is pretty sad. So, numbers... *drum roll* Glucose levels of 3 months came out at .007! .007 is the baseline. Anything below that is perfect. *phew!*

Cholesterol levels were perfect! Optimal numbers for the bad cholesterol should be below 4. Mine were close to 3. Average cholesterol (difference between good and bad) was good as well.

My B12 is still rock bottom. Just had one shot of B12 2 weeks ago, next shot end of this month.

My iron is still rock bottom even though I'm taking pills every day.

My blood pressure on the other hand has gone back up from a dismal 103 over 69 to 123 over 80! Go figure! 0_o

My new meds are not working as well as the old ones. Doctor switched me from amitriptylene to norotriptylene over 2 weeks ago. The switch was to mainly deal with the side effects of insane dry mouth issues. What the noro version doesn't treat apart from the C9 nerve bundle is the migraine control, and mood control. So back to amis I go. I had a whopping migraine sunday that made me want to use a drill to relieve the pressure. I've also noticed that I'm having insane mood swings, 0 to bitch in 5 seconds. My poor husband doesn't like Angelzilla and I don't blame him one bit. I don't like her either! I'm also going from happy to heart broken in tears in about the same amount of time and again, for no known reason. Time to go back to amis :(

Doctor said once these things have stabilised again, he wants me to try another anti depressant and if that works, to slowly switch back to noro since the dry mouth issue would be very much present.

Another change I also noticed in the past 2 weeks is my appetite. I'm hungry all the time. I've gained 5 kilos :( not cool. So that's the last straw for me. I want to go back to amis and stay on them! This noro crap isn't taking care of the problems one bit, and actually creating problems.

In other news....

I'm hoping to collaborate on a new project with J-gal stemming from the free Mac-university class in humanities that just finished last week. It would be in the form of a zine. I hope we get the go ahead for this project as it would be a nice way of keeping in touch and also showing other people what we've done as a group and individually.

I want to stay involved, in whatever capacity I can. I am willing to donate my time, since time is all I have a lot of these days. And it would also keep me busy doing things I love to do. So keeping fingers crossed that we can do this!

Dec 13th, 2011 - Anniversary

Today is the day that I met my 2nd husband face to face for the first time, 11 years ago.

For those naysayers who say internet meetings and long distance relationships don't work, I say Fie!
They work as long as you are completely honest with each other, don't sugar coat your life and share e.v.e.r.y.t.h.i.n.g.! without exception.

We were completely honest with each other and shared everything and still do. We have a close connection, an even closer relationship. We complement each other. One without the other does not function well to put it simply. For us, separation equals amputation of the spirit.

I wish this relationship for everyone out there. All those who are still waiting, wondering if their turn will ever come. I waited 39 long years for my turn to come and it was worth all the pain, misery, and abuse. Some have asked me if I could go back, would I change anything? My answer is no! Because changing even the smallest thing might mean that I would risk the chance of never meeting my soul mate.

Chest Pains October 30th 2011

http://en.wikipedia.org/wiki/Vitamin_B12_deficiency

I saw Dr. Croft on Friday and had a long talk with him, which resulted in him recommending that I see a therapist. He put a request for me to meet one at the clinic. I hope I get a good one as the type of therapist I've had off and on in the past has been useless. I do not like being preached at or condescended to or pitied. These things are useless as far as I'm concerned. I made sure to tell him that as well. He asked me a whole bunch of questions, difficult questions that I had a hard time answering without admitting there is a problem. I finally decided to stop denying myself the help I so need to deal with my past. He was quite amazed at how much insight I have of my past and I told him, I know what happened, I realised it happened, but I've never been given the tools to treat those past issues. I've always floundered for the answers/cure. My husband has done a fantastic job helping me over the past 11 years, but now what's left, even he can't help me overcome.

My AIC (blood sugar) was at .066! That felt very good to hear that :)

He also said that I'm low on vitamin B12 and wants me to get shots every month. So I'll have to go to the clinic once a month to get a shot of B12. More than likely that this is caused by the Metformin I'm taking. And because of my sulfa based medication allergy, I don't have many choices of alternatives to Metformin. I had 2 choices for the B12, pills (which weren't covered) or shots (which are covered by OW) once a month. I obviously opted for the shots and didn't find out until later that I would have to come in the clinic once a month for a shot of B12. As if I couldn't give myself the shot LOL

I have a referral appointment for St Joe's to a lung specialist on November 11th. Dr. Croft will be forwarding the various results from both the lung and heart CT scans & ultra sounds. There appears to be anomalies in both organs that he can't figure out which is causing issues for the other or if they are totally unrelated.

We discussed very quickly that most of my symptoms could be a definite result of autonomic neuropathy and will have a better idea once I've gone to the specialist.

He's also going to put forward a request that I get some type of ambulatory assistance. (I'm dreading this one) I don't feel ready to capitulate and start relying on equipment to get me around. Especially that I would have nowhere to store said item when I'm at home or even using it at home. The carting of whatever equipment he's submitting a request for up and down the stairs of this building would kill me and it's not like I have anyone else to bring it in or out. Andy has his own health issues to contend with.

I'm not sure if it's the cold weather or the natural progression, but the pain in my chest is worsening. I can't raise both arms above my head to reach for a plate, etc without experiencing pain that cuts my breathing into gasps from the unreal pain that explodes in my chest. It literally feels like I"m being stabbed. I've also begun to have nightmares involving the pain and last night I had a whopper of a nightmare that I had caught a cold and I couldn't breath. Woke up terrified and shaking and it took a couple of hours to even consider going back to sleep. I dreaded it since I did not want to have that very real nightmare again.

The pain seems to be sitting on the sternum, not deep in the chest cavity. Reminds me of the chest pains I had as a child after I worked in the barn/fields moving heavy hay and straw bales. It felt like my chest was going to burst open which of course it wasn't going to do that but felt like a very real threat much the same as it does today.

I'm feeling helpless more and more as my body betrays me on a daily basis. Standing up is filled with pain, getting out of bed is filled with pain, sitting equals pain. The pain is located in my joints, muscles, skin, bones, organs. I really hope that it will plateau soon. I don't like having to take pain killers like oxycocet. They leave me fuzzy headed, unable to figure simple things out. The pain also saps my strength to do more than the very basic needs of living. I don't like housework, never had liked housework and now I look at housework with the resulting pain and absolutely do not want to do housework as it has become the most distasteful on my list of to do's.

Long time

I know, it's been a long time since I wrote in this journal.

I just didn't see the point in writing. I'm only pointing out the obvious to myself, making myself miserable. No one is going to read this even less will care.

Fibro being seen as a copout really makes you wonder about people. I've heard "But you don't look sick" so often I feel like screaming!

I'm tired, I"m fed up, I'm just not doing so hot right now.

On the other hand, there is a class I'm going to be interviewed for this month. It's offered by McMaster as a free university level class and it's in the humanities department! The name of the class is Voicing Hamilton.

I do hope I get chosen to attend. It would really help me focus on something other than pain and misery and no money and no food and just plain no nothing. Yeah I know, me engish is gud yea? Sometimes, I just don't care how I write. And other days I just beat myself over the head because I'm not using correct spelling, phraseology, yadda yadda yadda..

I'm also going to concentrate on developing more crochet patterns and try and sell them online. Not like I'm going to charge a ton of money for them. 1$ per pattern, yippy! but I figure if I can sell 10 of them at 1$ each as opposed to one of them at 5$ each, I come out ahead by going with the lower price tag. Time will tell if my marketing strategy will work or not. Here's crossing my fingers.