Everythings good
Hi!
Update time so we're all in the know. heh. :)
I've been feeling good generally still. Random weird pains, random chest pain, but not very often and not very severe. As much as I hate winter... I suspect it helps. BOO!
I'm in the process of being weened off of Prednisone. In three months time I should be on a much lower dosage - at which time we'll check to see if it's possible to get me off the steroids. Hope so! More often then not these days I feel like by taking the pills I'm poisoning myself rather then controlling an out of control disease. I feel the Lupus is in control for the time being - go immune system! Or maybe, not go immune system? Perhaps when it's active is when its bad? Not sure.
You know... there's a lot of us out there. Lupus sufferers. MS. TMJ. All sorts of painful diseases. Lots of people have contacted me - either because of this blog or because of the
purple things in my store. Sometimes it makes me sad to know how many of you out there suffer or have suffered from these things. Sometimes it's a real comfort when I get to talk to you guys. I think about you guys... and I hope you all are ok out there.
So to all you guys I say: Keep your head up. When you feel isolated in your disease...KNOW there are people out there that care, understand, and even experience the same things you do. At one point, really, I considered the possibility of death. And here I sit today feeling pretty damn good. Something when I was THAT sick I never thought would be possible again. Anyway the point is - never lose hope. Just... don't give up on yourself. You ARE strong enough to go through this. If you weren't - you wouldn't be.
<3 Nyte
Some swelling.
Hands and knee's have been swelling/painful last few days. The weather is going kinda bonkers. Warm/Cold/Snow repeat.
In other news... the Lupus fundraising efforts within' SL has made almost 100USD. Yay!! Now we just need the American dollar to strengthen again. It's just weird having the Canadian dollar higher.
Prickly Pear Juice
Ok! Anyone see that show called "MANswers"? They are kinda like a dirtier version of Myth Busters, I guess. Anywho, they said on a recent show that "Prickly Pear Juice" helps/cutes with hangovers. Well.... I'll let you know tomorrow how true that is. I suffer from the worst hangovers ever.
On my way to a health food store, money in hand, well ok purse! The mission is drinking some of this cactus juice then getting my drunk on in a large way. WOO! Here's to not making an ass of myself tonight! haha! :)
Edit: Not sure if it works. Ended up not being too drunk. So, inconclusive results. I felt ok in the morning.
Sad :(
I'm down today. I must be PMSing. lol. Because really, I'm not usually emotional over Lupus. In my eyes, it's self defeating and well just a waste of energy/emotion to be upset a lot about Lupus. Once in awhile days are allowed! So here I am, wallowing a bit.
I've been reading Lupus sites like crazy...I've been fueled by the MS mention. Seeing how similar they are, etc etc. I can safely say, I don't believe I have MS. I believe my Lupus caused some symptoms that were very similar, or even the same, to those of MS.
Anyway in my readings I've come across things like: *most* people die as a result of kidney failure caused by Lupus, and if you're not in the category it's heart failure, next lungs. Oh and we're more suseptible to cancer. Lemme shout out to one of my fave sayings here: WTF?! Maybe I've been ignoring websites that just put it out there like that. Not sure why this is so shocking to me. I mean, this *must* have been relayed to me at some point.
I'm doing good generally now, don't get me wrong. Everything that is supposed to be functioning in my body, is! It's just... man, who wants to know in 20 years your kidneys wont work or however long. Ya know? Shit. My sister and I have a joke - sometimes guffin' around saying "Well, geez, you better keep those kidney's good, I'm gonna need one". Stuff like that. I wasn't ever serious tho.
So here I am, being a bit sad. Tomorrow I'll be fine, heck, in a few hours I'll be over it. Just sayin'... cuz I can. And, PMS sucks!
Chest pain...enough already!
Just thought I'd mention this so I have in on record. I forget to tell my doc a lot, this blog helps.
Chest pain is being more frequent. At least we know it's not my heart, but still it's fricken annoying. I even walk slower when it feels like this - so to keep my heart and lungs at a constant pace. Usually it comes when its overcast outside - the sky is pretty much cloudless today. Anywho, I figured out what this chest pain is... well ok, I'm not a doctor, but it's my best guess. Swelling of the sacs that surround my lungs, or
Pleurisy.
Doc visit
So I saw my doctor. I found out his concern. MS. He looked in depth at all my charts from previous doc and started to form a theory. The theory is we should be on the look out for MS. Not that I have it, but I have in the past shown evidence to suspect MS.
He read to me what the Neurologist had said - I have *whatever* it is called in your brain that MS people have. It was a long medical word, started with a D. He asked whatever happened with the first time they went hunting in my brain - I told him that I got an MRI - they saw abnormalties in my brain. I then saw another specialist and did some weird tests with black flashing screens and noises with weird things hooked up to my head, feet, and hands. And they poked and prodded me in various places with electricity, to make my hands/feet move without me telling them to. The outcome of that was - silence. I guess I could have been more diligent in following up - because I still don't know FOR SURE but I'm under the assumption if the docs did see further evidence to suggest MS I would have been informed.
I asked him if we should keep investigating MS. He said for now, no. Because at this point even if I did have MS - they wouldn't change my treatment/anything cuz everything is normal basically. He did say, the *second* my cross-eyed "extreme brain farts" show up again (if ever) or if anything changes to go to him - THAT day. I'm supposed on alert for the brain farts, numbness in my hands, extreme physical weakness, anything... different.
So for now, we'll just be on an "orange alert" healthwise (haha i'm so funny, eh? pfft). I'm not sure how I feel about this information. I'm not sure if I should be worried. I just... don't know enough and its not like I will know until it happens. Only time will tell and what symptoms tomorrow brings. I'm not uncomfortable with that particularly cuz that's just kinda how it is now anyway - I don't know when another flare will come. But I'm not exactly comfy with the new info either. *shrug* Dunno!
So there it is. Glad he didn't say his suspicions last week though. Waiting to see him for a week would have killed me.
Edit: Dood I just looked up
MS - I better not have it. It doesn't sound fun AT ALL. And I found the word - the D one that the MRI shows my brain has:
DemyelinationEDIT AGAIN!: It seems I have not educated myself fully on Lupus - it seems Lupus and funny brain things are friends with each other and have fun messing you up. See?
http://www.rheumatology.org/sections/pediatric/sledai.asp?aud=memPHEW. I was freakin' out there.
Sunny.
Sunny today. Sky is blue like only Alberta sky can be. *sigh* So pretty. Not a cloud to be seen. Anyway, no symptoms. All pains, gone. Hm.
How can weather effect so much? Is this normal??
Side: I've been observing this weather thing for about 2 months now. Pain is pretty darn consistent with bad weather. I don't understand this.
Time to do some research I guess.
ECG n' stuff
Saw the doc today. My other docs FINALLY sent him my medical records. He was...different. It was kinda weird. He suddenly... had time for me? I guess that's it. We looked at some of the notes passed between docs about me. I guess I have two kinds of Lupus. Lupus Nephritis and Systemic Lupus Erythematosus. I knew this, I just didn't know the kidney involvement part of it had a name. Interesting.
I mentioned my chest pains to the doc. Everyone in the medical field gets so wirey when you mention chest pain. lol. I knew it was nothing, just a lupus thing that happens to me.
See? But regardless he sent me for an ECG (or whatever it's called where they hook you up to a machine and stick things all over your chest that read how your heart is). It's fine. Go heart! He did prescribe some anti inflammatory/pain killers. So hopefully the chest pain goes away soon. It's annyoing.
The doc ordered more blood/urine. I have to see him next week. Friday. He out of the blue asked, looking thoughful "Do your hands ever go numb?". I kinda stared at him a sec, trying to figure out where this was going... and answered "YES! Why?!" Then I elaborated, see it's only usually my right hand and only when I lean on the elbow. It'll STAY numb for hours after that, but I'm pretty sure that's all that triggers this. So anyway, he then asks if my hands are weak. Well. I'm not sure? Perhaps? I never felt like I had particularly strong hands... anywho, I dunno where all these questions were going. I can wait for answers. I think he has a inkling about something, but wanted the latests test results first. *shrugs* On that thought... he asked if I ever had vision problems. I said no, but perhaps I should re-think that answer. At a time, it could have been yes. Does that count? Remember the extreme brain farts? (Eyes going crossed, extreme confusion, almost felt like the world just shut off for minute -- woo crazyness, the feeling of being stoned/drunk and NOT).
Also had some knee pain today. Not bad. Just sayin'... cuz I said I should on the last entry. Also, weather was rainy. There's a possible link to bad weather. I'm going to start to document it more.
Or not?
Ok, so, the doctor lowered my dose of steriods right? Right. Not sure if what's going on is just some bumps in the road of tapering off these drugs or what. I'm kinda afraid of the what. I've been experiencing random pains, daily. What I've termed "floating pains" because it's like you go to a bed with a pain for example in your wrists next day you wake up with pain in your knees. It floats around your body and can stop anywhere.
One of the first visits to emerg was because of cheat pain. I've been getting that lately - about 4-5 times since lower dose so far. It's really really uncomfy to say the least and disruptive to daily life. It's hard to do anything that requires any sort of chest movement. Even sitting here. So mostly, I lay around on the couch on days w/ the chest pain. It's a drag. TV is boring and I always fall asleep.
I have an appt with my doctor tomorrow. So will discuss the new floating pains with him. I sincerely hope this isn't Lupus going nuts again. Don't wanna do that again so soon.
I was just thinking, the whole point of this blog initially was to record daily happenings healthwise - to tell doctors. I stopped doing that. Maybe I should start again.
Yay and boo (RL complaints). LOOOOONG!
I saw my new doctor on Monday to get my latest blood/urine test results back. Strangely he didn't do any of the "lupus tests" but did test an array of other things which I suppose is most important considering the biggest indicator for how active (or not) the Lupus is, is how I feel.
Anywhooo on to the good news! My kidneys are functioning normally and there's no more sign of anemia! YAY for all the Alberta beef I've been eating. haha :P For the most part I feel pretty good lately. I get ache's, but I'm getting used to just waking up and having something sore and/or swollen. It's obvious to me that the Lupus is in remission, and hopefully stays there (you bastard lupus, get outta here!!!!). YAY! :)
Now for the "boo" part of this entry.
I bought a washing machine and dryer recently. The old washing machine was a cheap little thing, it bounced around so hardcore that it ended up ripping up the flooring in the laundry room. So, new ones were in order. If I knew then what I know now, I'd choose the chewed up flooring.
The machines were purchased by a company called "Coast Wholesale Appliance". Instead of typing up the whole story again, I will just copy and paste the email's I've sent to management and head office. If you're in Western Canada I would STRONGLY advise you to be wary when dealing with these people if you're in the market for appliance's.
Email sent to manager of the store:
I would like to take a few minutes to relay to you my utter and complete dissatisfaction with the way I was treated as a customer of your business. Never in my life have I been so dissatisfied with a company and never have I written such a letter.
On July 23rd 2007 I purchased a floor model front-load washer and dryer from you. Invoice # ****. Order # ****. The total cost was $****.**CAD, paid in full. The sales person was *salesPerson* and he was very kind to us. However this is where the good experience stops.
The washer and dryer were delivered on Monday July 30th. The delivery people damaged my door, however did not tell me about this damage. They instead, put the product in its place and left. I noticed this a few hours later.
Upon inspection of the machines I realized we were missing essential items, such as water hoses, drainage hose, lint trap, etc. These did not come with the machines, as expected. No one told us would would have to acquire these on our own, which would have been extremely helpful information and honestly probably would have swayed our choice toward NOT purchasing the machines. We're also missing the lint trap, which in itself causes a great fire hazard, as you should know. Due to this lack of essential material we had to call an appliance service person to come in. On July 31, 2007 $**.** was paid to *BusinessName* Appliance Repairs for installation.
While the appliance repair man was at my home, I called *salesPerson* to inquire about the missing installation equipment. *salesPerson* then told me to "send my repairman to Home Depot to pick up the parts". Not a plausible answer. Sorry, as should be understandable, I did not wish to send my repairman on a 45 minute drive on my money. This has already cost me more then I bargained for. The repairman ended up using the water hoses and drainage hose from the old washing machine. However, we still have no lint trap for the dryer (again, fire hazard). After the repairman was done with installation he tested the machines. The dryer worked fine (aside from the missing lint trap). The washing machine, however did not work. The repairman then advised me to be in contact with you guys because considering it's a brand new machine, it should work.
I called *salesPerson* at least 6 times on July 31 2007. Nothing was resolved. He was informed very early on the machine was not working. He talked me through many steps to get the machine working. All of them failed. All in all I spent about 2 hours on the phone with your company. The last thing I heard from *salesPerson* was "ok, try this one last thing and if that doesn't work I will send a repairman out for you." The last thing he told me to do failed. So I called your company again. *salesPerson* was busy so I left a voice mail. I got no call back this day.
On Wed. August 1 2007 I attempted to call *salesPerson* again. I was told he was in a meeting and to leave a message. Left another message. No call back at all on August 1st.
On Thursday August 2, 2007. My sister, *sistersName*, attempted to get in touch with the manager of your store. She is unsure of who she left a message for. *salesPerson* finally called me back at 4:30 pm. He simply gave me a number for a repair company. Helpful? Not even a little. I have a phonebook, if this was the answer, I had it two days ago. Not impressed. I then called the repair company I was told to. They are called *repairCompany*. However, they were now closed because *salesPerson* has waited so late to call me.
Friday August 3, 2007. I got in touch with *repairCompany*. They set up a repair person to come on the 11th of August.
I've just called *repairCompany* again, to see if they can supply us with our lint trap. They cannot.
I'm at the point now, where I don't even want these machines anymore. They have created way to much hassle for what they are worth. I would like to return the machines, to your company for a full refund, at your cost.
Please do something to make this better. I'm sick of calling your company and getting the run-around and no answers.
I look forward to a response within' 48 hours.
---------------------------------------------------------
Email sent today to two head office VP's and the HR girl (the only contact info I could find online):
To whom it may concern:
I've decided to forward my original email sent to "*managersName*, Manager" of your Calgary location. This situation is NOT resolved and quite frankly I am getting sick of being lied to and given the run around by employees of your company. The only thing I could think of to do is contact people at head office in hopes that SOMETHING will happen.
Please read the original email sent to *manager* (below) so the rest of this email makes sense.
To update the story:
*manager* did reply to my email via phone call. He assured me he would have one of the delivery men or a courier deliver the missing lint trap for the dryer. He had told me to call him on the 14th of August after the repairman had done his thing.
The repairman was here on August 14th, 2007. He took a look at the machine and discovered the entire computer that controls the washing machine was missing. Which leads me to the question: why is your company selling equipment that is obviously devoid of essential items? Thankfully he had another one and replaced it. In talking to the repairman, I've learned that Coast Appliances has quite the bad reputation for jerking people around and selling faulty equipment, as your company has done with myself and my family.
I then called *manager* and relayed the days events to him. I got a response along the lines of "Oh, THAT'S why the machine was waiting for service here". I'm not sure if this statement meant he was aware before selling the machine it was broken, but for the sake of your company I sure hope not! Anyway, *manager* said he would courier the missing lint trap to us (as we don't actually live in Calgary). No courier or lint trap was delivered on the 14th.
No courier on August 15th.
It is now the 16th of August. I called *manager* in the morning at about 9:45am mountain time to inquire about the lint trap. He stated it was indeed picked up by the courier on the 14th. However, I have still received no lint trap and it has been well over 24 hours from supposed pick up time. Will I ever get the complete set of items I paid almost $**** for? I have serious doubts.
I don't expect this situation to be resolved but I wanted you to be aware of how your company has treated me. As a side: We're replacing ALL the appliances in my home (oven, fridge, central vacuum, dishwasher) and your company has taught me a very valuable lesson: Where NOT to shop for appliances. I regret that Coast has gotten a penny of my money and I assure you that will never happen again.
I'm so sick of dealing with these people. I still have no lint trap. I'm still getting dicked around. *sigh* I've filed a report with the BBB Canada. Hopefully they can get something done for me, because it's obvious that I fail.
