The weather has been steady so I've been fine.. completely normal. I keep a 9 day forecast on my desktop at all times so I can request that day off if there is a cold front.
That aside, I came over an interesting post on Reddit. It was about a guy asking advice about how to make his girlfriend with cancer feel better. The most up-voted comment was along the lines of don't tell her to be positive.
The exact quote was, "Do not, I repeat do not, tell her to keep a positive attitude. Instead, show her that whatever she's feeling (fear, anger, frustration, etc...) is OK and you can handle it.
I recommend this interview and book: http://www.npr.org/templates/story/story.php?storyId=113758696"
Tonight, after texting my mom for a bit and her telling me to look for a better job with my response being I don't want to burn bridges by getting a great job then flaring so bad I have to quit in the first month, she told me, "don't be negative."
Is predicting something that happened every year for the last three years being negative or just being practical? It may not happen this year (or to be more precise, it could be a mild winter since its already demonstrated that it WILL still flare in cold fronts) and I'll seem healthy.. but that's the problem with invisible illnesses. Next winter I might not be so lucky.. and then what? Is it my fault because I wasn't positive enough? I feel this is a problem with ANY chronic health condition. Saying "stay positive" or "don't be so negative" is like saying, "Stop being a pussy. If you were stronger then you wouldn't be sick."
The thread also discusses how so many friends abandon you when your sick because they don't know how to handle it.. and how its mostly an age thing. It was a really interesting read, so I encourage you to click on the reddit link above since it'll send you straight there.
For support, help, and education through the eyes of one Interstitial Cystitis Warrior.
What is Interstitial Cystitis?
Interstitial Cystitis is the worst bladder infection you've ever had, except no bacteria is present, there is no cure, many foods make it worse, and separate treatments have maybe 1/3 of a chance of helping. The only true "treatment" is treating the pain, as its usually the only thing that will work. Even patients who've had their bladders removed still experience the pain. Doctors don't know what causes it or how to get rid of it but have many theories.
Need to find a doctor in your area who actually knows how to deal with IC humanely? Click here.
These are the new guidelines for diagnosing IC. If your doctor isn't using these then I suggest you find a new one who keeps up to date.
You can find the IC safe collaborated recipes between me and my step dad here.
Sunday, November 4, 2012
Friday, October 26, 2012
Trying to Track Which Pressures Set it Off
I'm spasming from the get-go this morning. The Pressure is still 29.99 in but is listed as (falling). It is 71 degrees outside, so like I said, nothing to do with the actual temperature.
EDIT: It is now 61 degrees a few hours later. The pressure actually rose to 30. I'm confused and in ample pain. All I can say is I know it has to do with temperature drops but that's about it.
EDIT: It is now 61 degrees a few hours later. The pressure actually rose to 30. I'm confused and in ample pain. All I can say is I know it has to do with temperature drops but that's about it.
Thursday, October 25, 2012
Cold Front Incoming
There's a huge cold front coming in. As of right now it is 71 F, and Rainmeter says that in two days it will be 43 F.
Current pressure is at 29.94 in.
I'm doing okay as of right now. I'm off for the next three days thankfully so I can see what happens and what I must decide to do about my work schedule for the rest of the season.
Current pressure is at 29.94 in.
I'm doing okay as of right now. I'm off for the next three days thankfully so I can see what happens and what I must decide to do about my work schedule for the rest of the season.
Saturday, October 20, 2012
Cold Fronts are Starting
Last week I had a bladder infection and now I'm in pain because the weather just dropped by twenty degrees. I have a 7 hour shift tomorrow and with someone on vacation I'm having a longer work week than normal but don't think I'll be able to hold up unless the weather steadies out. My workplace doesn't make accommodations for wheel chairs and walking turns very painful for me.
I'm already tempted to put in my two weeks notice, but then how am I going to live if I don't 'tough it out' so I'm not 'living on your dollar'?
If it is another infection then I'm screwed, as that would mean its now immune to yet another anti-biotic and I'm already allergic to all with sulfur in it. Last year it became immune to macrobid. I'm positive its the IC symptoms allowing the infection to return. All summer I didn't have a single problem and lived a normal life.
I'm already tempted to put in my two weeks notice, but then how am I going to live if I don't 'tough it out' so I'm not 'living on your dollar'?
If it is another infection then I'm screwed, as that would mean its now immune to yet another anti-biotic and I'm already allergic to all with sulfur in it. Last year it became immune to macrobid. I'm positive its the IC symptoms allowing the infection to return. All summer I didn't have a single problem and lived a normal life.
Labels:
bladder infection,
chronic pain,
cold front,
pain,
working with ic
Tuesday, October 9, 2012
Today I woke up to foul smelling urine and quite a bit of pain. I immediately called my doctor to drop off a urine sample and it came back positive. I'm in immense pain on and off throughout the day and had to miss my first day of work due to IC. If this damages my bladder lining it will not repair fast enough for me to keep my job. I hope I caught it early enough.
Pray for me if you can. I was just getting settled in and feeling victorious over my lack of flares.. now I'm in a huge one.
Pray for me if you can. I was just getting settled in and feeling victorious over my lack of flares.. now I'm in a huge one.
Tuesday, October 2, 2012
Interstitial Cystitis Returns
My symptoms were so minor I believed I was going into remission, or at least the cold fronts wouldn't do much harm to me. You couldn't really call what passed a cold front because we kept the AC on, but my body certainly felt it. I'm taking my heaviest meds and sitting on a heating pad in hopes of stopping it from becoming worse before work, and it's completely drained my motivation to do any of the activities I usually enjoy.
All the hope I had earlier of lasting a whole year at a job is basically gone now. If such a minor front could hurt me enough to distract me from my favorite activities, then how bad is it going to be when the major ones start rolling through? I know I positively won't be able to work the 20 hours a week that I do now. As a cashier, there's a lot of walking and standing involved. I already asked about accommodations for a wheel chair and all they had to do was point at the space in the stall.
There's only two registers in one stall, and it's not wide enough for a wheel chair or short enough for one. They could possibly let me sit on a stool, but half of my job is walking around straightening up product. In short, once I get that bad, I think they'll let me go.
My mom has already proven to be very disappointed in me and on the verge of labeling me a hypochondriac from last year despite me being fine this whole summer. If I did lose the job I'd face verbal abuse all day since she works even less hours than I do.
I know stress makes IC worse, but how can I not be stressed in this predicament? If I just had someone to say, "It will be alright. Just do what you can," my stress levels would be so much lower. My family is also saying that I'm "projecting" what will happen to me and so it will happen. which sounds more like they think magic is real to me. I wasn't thinking anything bad was going to happen until that surprise cold front hit and I had to run to the bathroom every two hours and had the worse day at work yet since we only have two people working there at a time, making bathroom breaks guilt-filled.
I wanted to go back to school for teaching since I was doing so much better, but I don't think that will ever be possible. I'm going to have to look into web design or some other stay at home job that isn't a scam just so I don't feel worthless all over again.
All the hope I had earlier of lasting a whole year at a job is basically gone now. If such a minor front could hurt me enough to distract me from my favorite activities, then how bad is it going to be when the major ones start rolling through? I know I positively won't be able to work the 20 hours a week that I do now. As a cashier, there's a lot of walking and standing involved. I already asked about accommodations for a wheel chair and all they had to do was point at the space in the stall.
There's only two registers in one stall, and it's not wide enough for a wheel chair or short enough for one. They could possibly let me sit on a stool, but half of my job is walking around straightening up product. In short, once I get that bad, I think they'll let me go.
My mom has already proven to be very disappointed in me and on the verge of labeling me a hypochondriac from last year despite me being fine this whole summer. If I did lose the job I'd face verbal abuse all day since she works even less hours than I do.
I know stress makes IC worse, but how can I not be stressed in this predicament? If I just had someone to say, "It will be alright. Just do what you can," my stress levels would be so much lower. My family is also saying that I'm "projecting" what will happen to me and so it will happen. which sounds more like they think magic is real to me. I wasn't thinking anything bad was going to happen until that surprise cold front hit and I had to run to the bathroom every two hours and had the worse day at work yet since we only have two people working there at a time, making bathroom breaks guilt-filled.
I wanted to go back to school for teaching since I was doing so much better, but I don't think that will ever be possible. I'm going to have to look into web design or some other stay at home job that isn't a scam just so I don't feel worthless all over again.
Labels:
anxiety,
cold front,
depression,
discrimination,
frequency,
ignorance,
interstitial cystitis,
job,
misunderstood,
pain,
parents,
spasms,
stress,
wheel chair
Thursday, September 20, 2012
Hoping for Future Prospects
There isn't much to say still. As is the nature of diseases like IC, you don't complain much when you feel better. I did have a small scare a few weeks back during the first major cold front. For about five hours I was in some pain, but the meds took care of it. We've been having colder weather for the past week and I seem to be doing alright.
Now I just have the generic worries of someone my age for now.. with the added stress of not knowing when my life may be randomly shut down again. I'm too afraid to hop to a better job because I don't want to ruin my chances of getting there again if I have to drop out of there after only a month of working there because my bladder decided it was no longer okay with the winter. Since that makes me feel stuck at my current job, I'm a bit bitter towards it by no fault of its own.
One thing I would like to do though is get into web design. I already have some experience with CSS and HTML, but not enough to do it as a living.. hobby wise I can produce most of what I want. I would hope it'd be enough to let me work from home so I wouldn't have to worry about my health every year and rather or not hopping jobs would be a worthy risk. Even though I'm not taking so much medicine now (although I should be) money's still very tight here and losing my job due to the disease could be disastrous for us.
I'm not sure how to get a foot into web design or anything: if classes would be better or if self teaching would be better..? Then that still leaves the issue of getting some anonymous person online to pay me, another anonymous person online, to do the job. It just doesn't seem very stable.
Everything else seems well and I should be enjoying this period of normality, but the whole thing of my life possibly being shut again down is just hanging over my head. I really want to save money to prepare for that but I also need to pay off the bills I built up while I was sick.
Now I just have the generic worries of someone my age for now.. with the added stress of not knowing when my life may be randomly shut down again. I'm too afraid to hop to a better job because I don't want to ruin my chances of getting there again if I have to drop out of there after only a month of working there because my bladder decided it was no longer okay with the winter. Since that makes me feel stuck at my current job, I'm a bit bitter towards it by no fault of its own.
One thing I would like to do though is get into web design. I already have some experience with CSS and HTML, but not enough to do it as a living.. hobby wise I can produce most of what I want. I would hope it'd be enough to let me work from home so I wouldn't have to worry about my health every year and rather or not hopping jobs would be a worthy risk. Even though I'm not taking so much medicine now (although I should be) money's still very tight here and losing my job due to the disease could be disastrous for us.
I'm not sure how to get a foot into web design or anything: if classes would be better or if self teaching would be better..? Then that still leaves the issue of getting some anonymous person online to pay me, another anonymous person online, to do the job. It just doesn't seem very stable.
Everything else seems well and I should be enjoying this period of normality, but the whole thing of my life possibly being shut again down is just hanging over my head. I really want to save money to prepare for that but I also need to pay off the bills I built up while I was sick.
Labels:
chronic illness,
interstitial cystitis,
jobs,
life in general
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