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Still taking life one day at a time… August 30, 2011

Filed under: Uncategorized — db1264 @ 7:49 pm

My husband and I were talking about taking life one day at a time and he suggested we try taking life a month at a time. I see his point, honest I do and I think it’s an okay idea, but I have trouble doing that. Because my life is in such painful turmoil at the moment…if I weren’t in such pain and actually felt like I could be helpful and productive I might be willing to consider the possibility. Right now, not so pretty much. Hopefully I’ll be getting some pain relief soon (like today) and then things will be better.

I have an appointment to see a gastroenterologist on the 20th of September. But the cool thing is, Laura (sp?) is putting me on a cancellation list so that I can hopefully be seen sooner. That’s what we’re hoping for! At first she wasn’t even going to schedule me for an appointment because she thought I was looking for someone to treat my ECFs and when I explained I already have someone treating me for them and all I need is someone to help find a possible cause for them, she immediately found an appointment for me. These doctors are familiar with my case – I had hernia surgery and a camera pill removed…so…

Thank goodness I have my old medical records and saw this particular clinic. I’m hoping to get into a pain clinic and soon.

Until next time,

Donna

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Back from vacation and there’s been a lot going on since then August 19, 2011

Filed under: Uncategorized — db1264 @ 6:07 pm

A lot has happened since returning from my vacation to Washington State. The trip was good and there were no issues going through the screening process. I had both my TSA card and the letter from my doctor, so that alleviated a lot of the issues that could have come up but didn’t, thank goodness.  Wearing a maxi dress also made things less complicated because they couldn’t ask me to raise my shirt or unbutton my pants without exposing all of me.

Here in PHX the lady patted my legs, front and back and didn’t even look at my supplies. When we went through security in PSC, I got the pat down of my legs, and had to rub my hands over the bags and then the lady used some sort of paper to check for explosives, which of course, was negative. And she didn’t look at any of my supplies either. So it was really good and I didn’t mind any of it at all. They never once touched Carli, even though she asked if she was next! Good thing they didn’t or I would have had a reason to record them!

I have had to change primary care docs, due to not being on employer insurance. Being on AHCCCS is the pits, but at least I have insurance for dr’s visits, medicines and my ostomy supplies. I found a new PCP and am going to be able to see the doctor who is most familiar with my ECFs. He had prescribed a pain med for me, but it is off the market, so he is referring me to a pain specialist where I can be evaluated and given the correct med and dosage. I just want the pain to stop!

Until next time,

Donna

 

 

 

Getting ready for my trip to Washington August 1, 2011

Filed under: Uncategorized — db1264 @ 9:20 pm

Three more days until my 8 year old and I head on our trip to Washington State. I’m excited yet terrified at the same time. I say this because I can’t wait to see my family – most of whom I haven’t seen in nearly 30 years – and because of my medical condition and wearing ostomy bags, I’m not looking forward to the pat-downs. I have my TSA card printed out and am getting a letter from my surgeon regarding my personal needs for the supplies I’ll be taking with me.

I have to pack everything now, but I’m not finding my suitcase…one, because I’m not looking for it and two, I’m not sure where it is, that’s why I’m not looking for it. I’m being lazy and I shouldn’t be. I need to be busy looking for the suitcase or a duffel bag, something to put our clothes in. I will put my ostomy supplies in a clear plastic bag and keep them separate from the rest of my luggage so I can have the TSA look at it, along with my letter from my doctor.

There are some family members I’d rather not speak to at all, but I suppose I’ll have to because that’s the polite thing to do. However, if they approach me in a hostile manner, I will not be responsible for their bodily injuries. Ok, I’m kidding, I would never hurt anyone, at least not physically. I’m too little to hurt anyone, but that doesn’t mean I don’t have to sit back and not defend myself. And I will defend myself, but will not cause a scene. Friends tell me I’m worrying about nothing and that things will be fine.

I tend to worry too much about things I have no control over. It’s a family trait, I’ve been told. Lucky me. I think all people tend to worry about things they have no control over, it’s human nature.  We can’t help ourselves. I need to learn to worry (stress) less about things because it does me no good. I am not going to heal and get better if I don’t stop stressing so much.

Until next time,

Donna

 

I’m sick and tired July 26, 2011

Filed under: Uncategorized — db1264 @ 6:25 pm

I’m sick and tired of bad language, no matter how it’s spelled out. When it comes to saying how cute a kid is, ‘effin’ is not an appropriate word to use. I’m getting to the point where I don’t want to be on facebook at all, ever because I can’t block my friends and family because I want to see them, their children, their families.

 But when I am bombarded with ‘f’ this and ‘f’ that, I get sick of it and really, really angry and disappointed that this is what today’s society deems as acceptable. It’s ok to drop the ‘f’ bomb where it will be forever immortalized in writing. Once it’s out there and everyone sees it, even if it’s deleted, it is not entirely erased from the memories of everyone who has read it. We ALL know what ‘effin’ really means. Please, let’s not go there, honestly. Kids are not ‘effin’ anything. That’s just morally repugnant.

 I don’t use those words. I might get upset, but I try my best not to offend anyone, and perhaps that’s my problem. I don’t want to be so politically correct that I don’t ever say a bad word, but when every other picture I see of a small child has ‘effin’ in it, I tend to see red and get really PISSED off. I can say ‘pissed off’ because I’m not using it in the context of a child or on a child’s picture.

 I know these are your friends, and that’s how they roll, but not me. I swear, if anyone posts a comment that my daughter is too ‘effin’ cute, you’d better believe that whomever says it will be blocked and unfriended from ever seeing any pictures of my child. So don’t even go there.

 Please, think about what you’re saying before you put it out there for God and everyone in the whole wide world to see. Seriously. Oh, and if you think this about you, maybe you need to rethink.

This whole rant (note on facebook) got started because a friend of my son’s said, and I quote, “effin love it danny!!!” – it got me very upset, angry, pissed off and just plain mad! I know kids (young adults, and I use the term ‘adult’ loosely) just don’t care how they come across as ignorant and repugnant to their friends. This kind of language is accepted and I believe expected of them, something I have despised and quite personally take offense to. Always have, always will. I don’t think it’s necessary, when commenting on a child’s photo, that ‘effin’ should be used. Like I said in my note, we all know what ‘effin’ is short for and it’s morally repugnant to me.

I mentioned it to my husband, and he said there’s nothing I can do about it and shouldn’t say anything, which I didn’t, at least not publicly. I know my son would come back with some comment that this is how his friends talk and he’s ok with it. Well, I’m not. Never have been, never will be. I even so much as threatened to block and unfriend anyone who makes such a comment regarding my child. I won’t stand for it and I don’t have to.

I thought blogging about this would make me feel better. But it hasn’t. I can’t get it off my mind, and every time I go to look at the picture, I get pissed off all over again. I’m not going to delete the post, because I really like the picture. And I want to report the person for her comment, but facebook doesn’t allow for that, so I’m stuck with it.

That’s what I get for being an older mom.

 

Taking life one day at a time July 22, 2011

Filed under: Uncategorized — db1264 @ 8:04 pm

I have always believed that life is better if you take it one day at a time. Most people I know would agree with me. To try and take life any other way, than perhaps moment by moment, would say that is the best way to take life, especially in my current medical state. If you’ve read my last two posts, you know that I have two  enterocutaneous fistulas (ECFs), and they, at times, can be painful. But that’s not what causes most of my pain. I had hernia repair surgery about 6 years ago (maybe 7 now, I’ve lost track, honestly) and the mess is well, all a mess.

I have had multiple procedures trying to figure out why I have these ECFs, all to no avail. I was given a colonoscopy as a last resort and the doctor also went in through my top ECF to see if he could find the cause, but there was nothing showing up. No known cause for my ECFs or my pain. I’m working on getting a different kind of pain medication, hopefully, the doctor will see his way to refilling it without having to see me. I was on two alternative medications, but they never really worked despite my taking them as prescribed for months. I’m afraid to go back on them for fear I will end up in the hospital again with a low RBC, and poor nutritional panels. One of the medications has a side effect of anorexia and I was not eating much of anything, mostly ice and crackers. Both of which I no longer eat anymore. I am on a regime of 4 vitamins – I have been told I need to add another one and am supposed to be getting iron infusions. I don’t know what those are, exactly, but I need to do some research to find out what they are, how they are performed and how often.

I attend college online full-time and am loving my class so far. My first few courses are geared toward student success and guide students through the program the school uses and then classes begin in earnest once students have successfully navigated their way through ANGEL. At first I fought the fact that I had to take classes that have nothing to do with what my degree will be in, but then once I took the first class and now this second one, I am glad the college has all of its students do these courses, because without them students might do ok, but they would not be as successful if they didn’t take them.

My degree is Bachelor of Science in Sociology and I’m either hoping to minor in Psychology or perhaps double majoring in Sociology and Psychology. We’ll see. I love learning about the human psyche, what makes people tick and why people act and react the way they do to certain situations, how they handle themselves in public vs. private, etc. I have always loved these subjects. I have always been interested in these things since I was a little girl. Growing up having foster children in my home and seeing how some of the kids behaved the way they did, how they reacted to certain situations they found themselves in and how they responded to a kind word or being scolded, always piqued my interest in why they behaved the way they did. It wasn’t until I started writing this very post that these thoughts came to me on why I am so intrigued by humans. Now I understand.

Until next time,

Donna

 

My supplies are here! July 20, 2011

Filed under: Uncategorized — db1264 @ 1:39 am

I normally don’t get so over-excited about ostomy supplies, but today I did!

My ostomy supplies arrived this afternoon while I was out with my daughter. I knew to expect them today. I was getting worried, because not having insurance and relying on the goodness of others to allow me to ‘buy’ my supplies and pay them back later was beginning to wear on me. I had to fill out a form about my finances and I faxed it back, then had to fill in some missing information and fax it back again with the filled in information.

Anyway, I believe I will have enough to use the next couple of weeks and then take enough with me when I go on my trip to Washington State with my 8 year old for a week for a family reunion and a surprise 90th birthday party for my mom – who actually turned 90 in May.  Wow, I’ve just come to the realization that my mom is 90 years old, I haven’t seen her in a couple of years, at least, and to be spending time with her and other family members – some of whom I haven’t seen in over 30 years (or more!) is exciting to say the least, but to be sick, like I am, makes me rather sad. I won’t be able to participate like I normally would, but I think my family will understand. At least I hope they will.

I have devised a way to have my bags (I wear two at a time now) last at least two days, if not longer (3, 4 or 5 if I’m lucky) and love finally figuring out how to make them last so long. I think maybe I should buy stock in Medfix or Hypafix and the clear tape (I prefer to call it ‘glass’ tape as it is clear) because I use them both to secure my bags (after paste and barrier rings) firmly to my abdomen. Now, if I could just figure out a way to get wet without getting the bags wet, I’d be all set. I’m still thinking about how to manage that situation.

Life does go on and I’m praying that soon they will get better. Not only for my husband and I, but our 8 year old daughter as well. For the last 10 years my husband has done everything to keep this family afloat without really working. Now, I’m pretty sure this isn’t going to sound so good for him, but he managed to not have a real live, no – you fill in the blank – it’s a 4 letter word, beginning with ‘s’ and ends in ‘t’ job, making me do all the work of staying employed and having insurance for the family. Well, when I first got sick, I told him this is probably the end of the working line for me as I don’t think I’ll be able to continue working anymore.

And I meant it. I honestly believe, even though the last three years working as an English Language Learner – Instructional Assistant has been the best darned job I’ve ever been privileged to work at, made me sick. The job was high stress and high activity and my poor body, between not getting the adequate sleep I needed every night, the stress of being a mom, wife and daughter to my father this last year and an already compromised intestinal tract, I developed Enterocutaneous Fistulas (ECFs). He still has his moments where he thinks I’m bluffing and that I’ll be returning to work after all, eventually, but I’m not so sure. We’ll see. Whatever job I get, whatever field I decide to go into, will have to be one where I can work from home, or part-time with awesome benefits and pay despite the fact that I’m only part-time, and allow me to take sick days when I need them and see my doctor when I need to.

Back to my husband…he is working on getting a full-time, Monday through Friday 8a – 5p, real live, no s**t job! A regular 40 hour work week job that will pay him a decent salary, awesome benefits,including insurance for the three of us (hubby, daughter and I). No more living paycheck to paycheck and no more stressing about how to make ends meet, pay rent on time, and all of the other bills that are outstanding. We are both attending the same college, full-time online and if, IF he gets this job, his tuition will go away, as long as he continues to work at the college we are attending.

My life will be less stressful, I can finally be the kind of mother I have always wanted to be for our daughter and give her the kind of life she deserves.

Until next time,

Donna

 

Life with enterocutaneous fistulas July 18, 2011

Filed under: Uncategorized — db1264 @ 10:18 pm

I have two entercutaneous fistulas that spontaneously erupted late last year. I now wear two ostomy bags to collect the waste and pus from them. I recently quit my job as an English Language Learner – Instructional Assistant because of my health. I also lost insurance at the beginning of July. Suffice it to say, I didn’t think about not being able to get my ostomy supplies without insurance…I figured it would all take care of itself. Boy was I ever wrong. Sort of. I recently came across a support group near where I live, and I am hoping to attend the first meeting in August.

I have come across more than just a physical support group. I also belong to C3 Life and Oley Support Foundation. I also joined UOAA recently and find that talking with other like people who wear ostomy bags – all for different reasons, we all have something in common and can commeserate with one another. It’s nice to speak with others who can relate to your situation even though it is not the same.

I recently spent 6 days in the hospital because my RBC was at 5. Dangerously low and near death from what I have come to understand. I had some procedures done and received two transfusions. The second one took hold, thank goodness. I know I am probably still anemic, but probably not nearly as bad as I have been. I am on a daily regime of vitamins and Boost protein shakes, three times a day (the shakes, not the vitamins!)

Life for me has been a day by day thing. I don’t know of any better way to handle what I am going through other than day by day. Sometimes moment by moment. It all depends on how much pain I am in and what my day is looking like. Fortunately I don’t have to do a whole lot of getting up and down or moving around, although I do. I have a child to take care of, be mother to and I am also a wife, daughter and full time online college student.  Life for me did not stop just because I got sick again. I won’t let my fistulas (which I have named Pablo and Vincent) get me down, although I must admit there are days when I am in such pain it is hard to get out of bed and live my life, but I do. I have to. I need to be strong and continue living. I’m too young to die and I’m not going to allow this to consume me, at least not entirely.

I originally came on here in June 0f 2010 and had never come back until I found that a recent acquaintance of mine is on here. I figured this would be the best place to blog and have her find me more easily. Now I just need to blog here and everything will be great!