I have been meaning to blog but every time I go to do it something comes up. Lots of things have happened since my last post. I don't even know where to start so I will just do a little update of current things and hope to start blogging more. One reason why I do want to blog more is because I have recently had some issues with my intestinal system and the Doctor wants me to have an endoscopy (again) and a colonoscopy (last one done when I was 23). She is thinking I have Crohn's Disease so right now she has me on a Low Residue Diet.....more like a baby food diet. There's not a lot you can eat on this diet and some of the things I can eat are on another list for my other illnesses that I can't eat. So, right now I am in the middle of preparing a list of my three different illnesses of foods I can and can't eat then narrowing it down to what I can eat on one list instead of three. It gets really confusing. I did make the mistake tonight of eating something that I should not have but I was really hungry for something with more protein and would fill me up. Uh, yeah it filled me up...too much and then I felt sick the rest of the evening.
The other thing that I could have if Crohn's comes out negative is a Gluten Intolerance so I have been trying to lay off of Gluten. It's just not as easy at it sounds because when you are on a very limited budget it's hard to pick out foods w/o Gluten or make two different meals. There has got to be an easier way to all of this which is why I am researching all these different issues I have and having one list of what I can eat. It's a work in progress and once I get results back from those two tests hopefully it will determine what I have so I can move forward.
This weekend is our fifth Wedding Anniversary and while that doesn't sound like a long time you would think different once you knew all the stuff we have gone through in the last several years. This is a big accomplishment having our 5th Anniversary and I am quite excited. A little disappointed because we have no money to go out on a date and have a nice dinner. I would just love to get out of the house with my hubby. It's been almost two years since our last date/dinner out alone. BAH! So, not sure what we are going to do. I guess just a usual night at the house. Someday we will be able to have a dinner out again. I am just hoping that I am feeling well on Saturday....last thing I want is to be feeling sick all night so I better be good and eat well the next few days.
Thursday, October 4, 2012
Sunday, February 12, 2012
Miss my blog
So, it's been forever since I blogged and so much has happened since my last blog that I don't know where to begin. There's been a lot of ups and a lot of downs. At the moment we are in for a lot of changes in our household. I've Aldo been having a lot of health issues and they have been really scary to me even though I've been playing it cool. I'll gather my thoughts and update in a day or two with what has happened in the last couple of months. A lot to type on my iPod. I really need the computer to do this
Much love to all
Much love to all
Saturday, November 5, 2011
Saturday, October 22, 2011
Present, Past and Future
I am proud to say that my daughter just had her 6 week Progress Report and she had ALL A's and B's!!! I am so so proud of her hard work. The first few weeks of transitioning into middle school can be really hard, but she has adjusted really well and I have too, lol! Took me a little bit to accept that my little girl is in middle school. She's playing trumpet this year and has been doing well at that except for a really bad fall outside last week on her face. Had to take her into the ER and get her checked out. Her mouth is still sore so she's taken some time off until we can get her into the Dentist on Nov.9th and make sure her front teeth are all ok.
Next goal is to get her signed up for the babysitter course so she can start babysitting. She did earn a good amount of money taking care of our neighbors house and plants while she was gone. My daughter seems eager to earn money and is very motivated as I was at that age. I just hope she never experiences the things I did from age 14 on and miss out on her teen years as I did. I had a family trauma that made me grow up too quick at age 14, get a job and take care of my mom by myself while my Dad was working and going to school so he was never home. I learned how to cook, grocery shop, pay bills, and take my mom to all her Dr. appointments. I was given a car on my 16th Birthday which wasn't really a present but a way for me to take on more responsibility.
I will NEVER allow this to happen to my daughter. It scares me with my Fibromyalgia, my bladder disease and now a new health concern which could be a tumor around my adrenal gland, Pheochromocytoma is the name of the illness. Look it up....the symptoms are exactly like I've been having. The Mayo Clinic online has good information about it. Anyway, my whole point is that no matter how sick I am or get I will never put my daughter in the position I was in. It's too much to do to a child. I should have had other family members helping out or sent to Southern Oregon where my Aunt lived. Not that I would want to be away, but I missed so much in those years. The most important years when a child needs a mom or a parent. My Dad was too busy and dealing with it in his own way that he was not emotionally there for me.
I would not send my daughter away if I got terribly ill, but I would do my very best to rest while she was in school and not expect her to take care of my problems. I would be there every day for her when she came home from school and hear about her day and do as much as I can do for her. Maybe I'm jumping the gun, but it's a fear I've been having for awhile. Because I missed out on those years of my life I skipped some major emotional steps during those times and realizing now how it has impacted my life, my decisions, choices I've made in my past and most of all, relationships that I chose to be in. I could use a lot more counseling but the counseling I did get for several years made me realize the big snowball effect one thing in my life that started when I was 14 and continued until now and how it has impacted a lot in my life. At least at 40 I can put this all together and try to make changes in my future.
I had a lot of resentment towards my mom for years and it's taken me a long time to get over that. I didn't understand at that age why she couldn't be there for me. She couldn't help it and it was not her fault. She was in a horrific auto accident and had a closed head injury that effected the part of her brain with reasoning, memory, decision making and the worst which was her emotions. I could not handle having a mom who was there for me 100% to a mom who yelled at me every day and for things that she would forget. It was too much on a child or anyone that does not understand the brain. My Dad made me go to counseling but I didn't know how to talk about what I was feeling inside. All I knew is that I lost my mom. She was there physically but not mentally. I was embarrassed to tell any of my friends because my mom was like being around a child. She was unpredictable so inviting friends over was not an option. I also witnessed my mom try to take her own life using pills as she locked herself in the bathroom while I called 911 and stayed on the line until they got there and took her to the hospital. I was alone, by myself with no one to support me, hug me or tell me it was going to be ok.
I've moved on a lot since then. I got into the medical field because I wanted to help people.....one would ask why after everything I went through in my childhood. Well, helping others is something that has always come to me naturally. Yes, I took care of my mom and it was not easy, but I did it and took her to all her Dr. appointments. I could have moved in with a friend, ran away or something else, but I didn't. I stayed until I was old enough to move out and start my own life.
I married young, had my first child, divorced, worked 50 hours or more a week, was in a relationship and was blessed with my daughter from that relationship which is another story for another time. All I will say for now is that is was a VERY abusive relationship and I got out. That is when I decided I was ready to go back to school and get my CNA first then work up to a Nurse.
I went through my CNA training which was a special class aimed in Acute Care which was specifically for hospitals. Most CNA courses do not offer this so it was a big plus. I worked at Providence Hospital in Portland in the Respiratory Unit. Wow, was that an amazing and fast paced unit to the hospital plus because respiratory infections were a huge issue their air system did not flow all around as the rest of the hospital did because of the high risk of infection. It was the most WARMEST part of the hospital. You could go down the hall to the Cardiac Unit and it was like walking into a freezer. We once had a patient in quarantine so we had to wear the whole quarantine yellow gown, mask, surgical cap, etc......just telling you that it was the hottest I have ever been in my life plus the patients door is always closed and NO air flow is functioning in the rooms...on purpose that is.
Our class was 8 full hours every day, five days a week. Half of the course was in the classroom and the other half was working at the hospital......which I LOVED! I studied every night, quizzed myself and made studying one of my top priorities besides my kiddso.
I passed the course with A's! Worked my butt off hard to achieve that grade. The next thing was to practice for my Oregon State Board of Nursing Exam. This is something scheduled in advance, part written and the other part is hands on with actors who are acting as patients. All together the exam is about 3 hours. Most don't pass the first time and take up to 3 times to pass. If you fail the 3rd time you have to take the entire course over again before taking the exam again. That's a lot of pressure! I studied every moment I got. The morning of my exam I was nervous as hell...had to be there around 6am, got coffee which was a huge mistake considering I have IBS and I was having nerves. OY! Good thing my name was not called first. I went in about an hour later, took my written and the hands on exam. Afterwards, they say thank you and tell you that you will know your results via snail mail withing a couple weeks.
I started preparing resumes, letters of recommendation from my instructors since they offered. I was top of the class so I was able to get several. I then started applying for positions and starting the interview process. Usually you can go through all of that and once you get your results in the mail and OSBN card then they can officially hire you. Well, I found this perfect job and it was in the Pediatric Unit working as a CNA while I go to school for my Nursing degree. I had an interview and they really wanted to hire me so they called the Oregon State Board Of Nursing and asked if my results had been mailed out. Their answer was yes and that I had the highest percentage in my group. They told the gal that my card should arrive withing a day or two. They hired me on the spot, was going to start a week from that date. I was SO happy as I had worked so hard for this and it was one of the biggest accomplishments of my life and the one thing that lifted my spirits and all the times that were hard in my life, the loss of sleep due to studying, taking care of my kids and working crazy hours finally paid off.
How QUICKLY things can change. That night after getting my card in the mail, purchasing my new scrubs, stethoscope, Sphygmomanometer, my nursing shoes which were the most comfy shoes ever. After shopping and feeling on top of the world, I went to pick my daughter up at my moms house and go home for the night. When I got there my daughter begged to stay the night at my moms. She really had to talk me into it and I finally said yes. I gave night hugs and I love yous then headed in my car on my way home. On my way home I was hit at 45-50mph, rear ended by a Suburban, driver who was drunk and his blood alcohol was .16! Twice the limit! I was hit so hard that my car basically crumbled like an accordian, all windows shattered and both of my shoes flew off my feet. One in the dashboard and one in the passenger floorboard. I had head lacerations and was bleeding a lot. The ambulance came and I was taken to the ER, strapped down to a board until they could do tests and make sure I hadn't broke my neck or spine. Turned out I had lots of soft tissue damage, tons of bruising all over my body and cuts & glass all over that the nurses had to remove. I had a concussion so I was put on a 24 hour watch. My car was totaled, I ended up with 2 protruding discs C5-6 (neck area) and the Lumbar had 2 protruding discs as well, Mysofascial Pain Disorder. My body would never be the same again to do any type of nursing work and I had to call the job I was hired for and tell them what happened and turn it down.
Took 2 years in court to prove my case even though this was the fault of a drunk driver. Here's some advice for EVERYONE! DON'T DRINK AND DRIVE! You may think you are ok or have sobered up but you have not! Just sayin'! You can kill someone or change their life forever. Being in pain every day is not fun and it's led to many other health issues with me. I am sure My Fibromyalgia may have something to do with it.
Ok, so years went by and I wanted badly to work in the medical field. I found a job and was hired in a position, Medical Records for a facility that is like a re-hab. Basically, when one has been in the hospital for awhile and they are at a point where they hospital can't keep them but they are not well enough to go home they end up in a facility such as this. I did a lot of admissions and the majority were head injuries of all kinds. This is where the point in my life turned around about my childhood and head injuries. These patients I worked with every day, interacted with them and their families and since I did all the admissions I was able to see their whole medical history before and after their accident. It was so much like my mom and how she is. I started asking my supervisor questions and reading up on all the different head injuries.....there are so many different head injuries that effect so many different parts of the brain and what it controls in your body. I got a better understanding that the way my mom was had not been her choice, her forgetfulness, emotions, etc was because of the part of the brain that wasn't firing correctly. I also learned one MAJOR thing.........THIS WAS NOT MY FAULT with her attempted suicide. I carried this with me for many many years.....up until a few years ago. A weight was lifted off my shoulders. All of this in my life has impacted so many choices I made, how I felt as a person. I had many people take advantage of me because there were parts pf myself that did not mature in some ways, I trusted too much which didn't help in relationships I got involved with.
I can now say that part of my life are on the right track and I know what I want for my daughter and what I don't want. I do know this....I will ALWAYS be there for her, to love her and if anything happens to me and my health I will do my best to lead her on the right track and not have her childhood taken away from her. I will encourage her to volunteer and teach her to not be judge others. She already has a big heart, she is compassionate and I have taught her about those with medical conditions and that they can't help the way they are and need to be treated just like she would want to be treated. My mom's accident taught me a lot in my life. Even though it took a lot of my childhood away it also taught me many positive things that I hope I can pass along to my children. Even my Fibromyalgia has made some of those in my family to understand those with disabilities more. Next time you see someone with a disability having a hard time reaching for something in the store, help them out....open doors, ask if they need help putting their groceries in the car. Just the little things mean the big things to some people. Take time to talk to your kids, let them know you love them every day and will always be there. Life is too precious to take for granted.
Next goal is to get her signed up for the babysitter course so she can start babysitting. She did earn a good amount of money taking care of our neighbors house and plants while she was gone. My daughter seems eager to earn money and is very motivated as I was at that age. I just hope she never experiences the things I did from age 14 on and miss out on her teen years as I did. I had a family trauma that made me grow up too quick at age 14, get a job and take care of my mom by myself while my Dad was working and going to school so he was never home. I learned how to cook, grocery shop, pay bills, and take my mom to all her Dr. appointments. I was given a car on my 16th Birthday which wasn't really a present but a way for me to take on more responsibility.
I will NEVER allow this to happen to my daughter. It scares me with my Fibromyalgia, my bladder disease and now a new health concern which could be a tumor around my adrenal gland, Pheochromocytoma is the name of the illness. Look it up....the symptoms are exactly like I've been having. The Mayo Clinic online has good information about it. Anyway, my whole point is that no matter how sick I am or get I will never put my daughter in the position I was in. It's too much to do to a child. I should have had other family members helping out or sent to Southern Oregon where my Aunt lived. Not that I would want to be away, but I missed so much in those years. The most important years when a child needs a mom or a parent. My Dad was too busy and dealing with it in his own way that he was not emotionally there for me.
I would not send my daughter away if I got terribly ill, but I would do my very best to rest while she was in school and not expect her to take care of my problems. I would be there every day for her when she came home from school and hear about her day and do as much as I can do for her. Maybe I'm jumping the gun, but it's a fear I've been having for awhile. Because I missed out on those years of my life I skipped some major emotional steps during those times and realizing now how it has impacted my life, my decisions, choices I've made in my past and most of all, relationships that I chose to be in. I could use a lot more counseling but the counseling I did get for several years made me realize the big snowball effect one thing in my life that started when I was 14 and continued until now and how it has impacted a lot in my life. At least at 40 I can put this all together and try to make changes in my future.
I had a lot of resentment towards my mom for years and it's taken me a long time to get over that. I didn't understand at that age why she couldn't be there for me. She couldn't help it and it was not her fault. She was in a horrific auto accident and had a closed head injury that effected the part of her brain with reasoning, memory, decision making and the worst which was her emotions. I could not handle having a mom who was there for me 100% to a mom who yelled at me every day and for things that she would forget. It was too much on a child or anyone that does not understand the brain. My Dad made me go to counseling but I didn't know how to talk about what I was feeling inside. All I knew is that I lost my mom. She was there physically but not mentally. I was embarrassed to tell any of my friends because my mom was like being around a child. She was unpredictable so inviting friends over was not an option. I also witnessed my mom try to take her own life using pills as she locked herself in the bathroom while I called 911 and stayed on the line until they got there and took her to the hospital. I was alone, by myself with no one to support me, hug me or tell me it was going to be ok.
I've moved on a lot since then. I got into the medical field because I wanted to help people.....one would ask why after everything I went through in my childhood. Well, helping others is something that has always come to me naturally. Yes, I took care of my mom and it was not easy, but I did it and took her to all her Dr. appointments. I could have moved in with a friend, ran away or something else, but I didn't. I stayed until I was old enough to move out and start my own life.
I married young, had my first child, divorced, worked 50 hours or more a week, was in a relationship and was blessed with my daughter from that relationship which is another story for another time. All I will say for now is that is was a VERY abusive relationship and I got out. That is when I decided I was ready to go back to school and get my CNA first then work up to a Nurse.
I went through my CNA training which was a special class aimed in Acute Care which was specifically for hospitals. Most CNA courses do not offer this so it was a big plus. I worked at Providence Hospital in Portland in the Respiratory Unit. Wow, was that an amazing and fast paced unit to the hospital plus because respiratory infections were a huge issue their air system did not flow all around as the rest of the hospital did because of the high risk of infection. It was the most WARMEST part of the hospital. You could go down the hall to the Cardiac Unit and it was like walking into a freezer. We once had a patient in quarantine so we had to wear the whole quarantine yellow gown, mask, surgical cap, etc......just telling you that it was the hottest I have ever been in my life plus the patients door is always closed and NO air flow is functioning in the rooms...on purpose that is.
Our class was 8 full hours every day, five days a week. Half of the course was in the classroom and the other half was working at the hospital......which I LOVED! I studied every night, quizzed myself and made studying one of my top priorities besides my kiddso.
I passed the course with A's! Worked my butt off hard to achieve that grade. The next thing was to practice for my Oregon State Board of Nursing Exam. This is something scheduled in advance, part written and the other part is hands on with actors who are acting as patients. All together the exam is about 3 hours. Most don't pass the first time and take up to 3 times to pass. If you fail the 3rd time you have to take the entire course over again before taking the exam again. That's a lot of pressure! I studied every moment I got. The morning of my exam I was nervous as hell...had to be there around 6am, got coffee which was a huge mistake considering I have IBS and I was having nerves. OY! Good thing my name was not called first. I went in about an hour later, took my written and the hands on exam. Afterwards, they say thank you and tell you that you will know your results via snail mail withing a couple weeks.
I started preparing resumes, letters of recommendation from my instructors since they offered. I was top of the class so I was able to get several. I then started applying for positions and starting the interview process. Usually you can go through all of that and once you get your results in the mail and OSBN card then they can officially hire you. Well, I found this perfect job and it was in the Pediatric Unit working as a CNA while I go to school for my Nursing degree. I had an interview and they really wanted to hire me so they called the Oregon State Board Of Nursing and asked if my results had been mailed out. Their answer was yes and that I had the highest percentage in my group. They told the gal that my card should arrive withing a day or two. They hired me on the spot, was going to start a week from that date. I was SO happy as I had worked so hard for this and it was one of the biggest accomplishments of my life and the one thing that lifted my spirits and all the times that were hard in my life, the loss of sleep due to studying, taking care of my kids and working crazy hours finally paid off.
How QUICKLY things can change. That night after getting my card in the mail, purchasing my new scrubs, stethoscope, Sphygmomanometer, my nursing shoes which were the most comfy shoes ever. After shopping and feeling on top of the world, I went to pick my daughter up at my moms house and go home for the night. When I got there my daughter begged to stay the night at my moms. She really had to talk me into it and I finally said yes. I gave night hugs and I love yous then headed in my car on my way home. On my way home I was hit at 45-50mph, rear ended by a Suburban, driver who was drunk and his blood alcohol was .16! Twice the limit! I was hit so hard that my car basically crumbled like an accordian, all windows shattered and both of my shoes flew off my feet. One in the dashboard and one in the passenger floorboard. I had head lacerations and was bleeding a lot. The ambulance came and I was taken to the ER, strapped down to a board until they could do tests and make sure I hadn't broke my neck or spine. Turned out I had lots of soft tissue damage, tons of bruising all over my body and cuts & glass all over that the nurses had to remove. I had a concussion so I was put on a 24 hour watch. My car was totaled, I ended up with 2 protruding discs C5-6 (neck area) and the Lumbar had 2 protruding discs as well, Mysofascial Pain Disorder. My body would never be the same again to do any type of nursing work and I had to call the job I was hired for and tell them what happened and turn it down.
Took 2 years in court to prove my case even though this was the fault of a drunk driver. Here's some advice for EVERYONE! DON'T DRINK AND DRIVE! You may think you are ok or have sobered up but you have not! Just sayin'! You can kill someone or change their life forever. Being in pain every day is not fun and it's led to many other health issues with me. I am sure My Fibromyalgia may have something to do with it.
Ok, so years went by and I wanted badly to work in the medical field. I found a job and was hired in a position, Medical Records for a facility that is like a re-hab. Basically, when one has been in the hospital for awhile and they are at a point where they hospital can't keep them but they are not well enough to go home they end up in a facility such as this. I did a lot of admissions and the majority were head injuries of all kinds. This is where the point in my life turned around about my childhood and head injuries. These patients I worked with every day, interacted with them and their families and since I did all the admissions I was able to see their whole medical history before and after their accident. It was so much like my mom and how she is. I started asking my supervisor questions and reading up on all the different head injuries.....there are so many different head injuries that effect so many different parts of the brain and what it controls in your body. I got a better understanding that the way my mom was had not been her choice, her forgetfulness, emotions, etc was because of the part of the brain that wasn't firing correctly. I also learned one MAJOR thing.........THIS WAS NOT MY FAULT with her attempted suicide. I carried this with me for many many years.....up until a few years ago. A weight was lifted off my shoulders. All of this in my life has impacted so many choices I made, how I felt as a person. I had many people take advantage of me because there were parts pf myself that did not mature in some ways, I trusted too much which didn't help in relationships I got involved with.
I can now say that part of my life are on the right track and I know what I want for my daughter and what I don't want. I do know this....I will ALWAYS be there for her, to love her and if anything happens to me and my health I will do my best to lead her on the right track and not have her childhood taken away from her. I will encourage her to volunteer and teach her to not be judge others. She already has a big heart, she is compassionate and I have taught her about those with medical conditions and that they can't help the way they are and need to be treated just like she would want to be treated. My mom's accident taught me a lot in my life. Even though it took a lot of my childhood away it also taught me many positive things that I hope I can pass along to my children. Even my Fibromyalgia has made some of those in my family to understand those with disabilities more. Next time you see someone with a disability having a hard time reaching for something in the store, help them out....open doors, ask if they need help putting their groceries in the car. Just the little things mean the big things to some people. Take time to talk to your kids, let them know you love them every day and will always be there. Life is too precious to take for granted.
Thursday, October 20, 2011
Just a small tid bit
So, been trying to blog but I'm finding it hard to type while being sick. I can't seem to type long without my eyes closing or seeing double vision. Got Bronchitis on the verge of pneumonia. Not fun. When I feel better I will start blogging regularly again.
Monday, October 10, 2011
Living with a Chronic Illness
I was diagnosed with Fibromyalgia a little over a year ago along with having 4 protruding discs ( two in my neck and two in my lower back ), Degenerative Disc Disease, IBS, Diverticulitis, Myofascial Pain Syndrome, Tinnitis, Chronic Migraines and my most recent diagnosis, Interstitial Cystitis which is a painful bladder disease. I think that's it, but I lose count of everything I have at times. There is no cure for the Fibro or the IC (Interstitial Cystitis). I am still learning about the Fibro and the IC....so much to learn still and just starting some treatments on the IC. Every day is frustrating living in constant pain. Most days I can hide it and there are days like this weekend when I just can't hide it because it's all too painful. On those days I get very little sleep because the pain keeps me awake or I can't get comfortable. One would think with the pain meds I take that it would deaden the pain. It only takes the edge off slightly which is better than nothing.
Most don't understand the two major illnesses that I have...Fibro and IC. Some have heard of it but then see those stupid commercials like the one for Cymbalta that shows a person before they take the drug and then after. Later in the commercial they are all happy and stating that they got their life back.....that is a bunch of BS and I really dislike those commercials so much. That's not the way it is at all. I was on Cymbalta, but I didn't notice any change so my Dr. put me on another drug which helps with the depression, but not with the pain.
There are days when it takes me hours to just get out of bed because I ache all over so much and the littlest thing like putting on pants and going down the stairs is the hardest and most exhausting thing to do. Once I get downstairs I have to take my meds and hope that somehow one of them will help in some way. After I wake up I go back up the stairs and proceed to take my shower. The shower feels good, but some days it's so exhausting to just wash my hair. By the time I get out of bed, get the kids off to school and then feel good enough to take a shower it can be 12-2pm. Just try to imagine that.......it use to only take me an hour to do all of that just a few years ago. The rest of the day is spent just trying to get what chores I can done before my husband comes home. I do my best to do this so he is not overwhelmed once he walks through the door after a long day at work.
I was denied once already for disability. The unfortunate thing, among many, about having Fibro and IC is that Disability does not always consider them a disability! Seriously! How can they not after just reading a short version of what my day is like. I am a member of a couple Fibro groups on Facebook and all of our stories are all very similar with the pain we live with every day. Some have been able to get disability and others have been fighting for years. If your application isn't worded according to their expectations then you are denied. It takes a lot of support from Dr's and documentation to get accepted the first time applying. I have to start all over again now that I have a newer more recent diagnosis. I'm working on how to word it correctly and trying to do my homework on that process so I don't get denied again. Thankfully I have a Urologist who offered to document meticulously and write a personal letter to Social Security stating that I am unable to work at a job due to my limitations. If I do get denied again then I will have to get a Social Security lawyer and fight to have it changed.
In the meantime, we are hardly making it financially and this is due to my disabilities. I feel very responsible for my lack of employment and see what it's doing to our family. I was once able to work over 50 hours on some weeks and bring in a decent income. I was a single parent for close to 10 years and didn't struggle even half as much as we are now. Financial stress causes a lot of stress on my body which doesn't help with trying to manage the pain.
It's hard having an illness that most people don't understand well enough. With a lot of diseases you look sick, but with Fibro and IC it's different which makes it difficult for others to understand. I may look ok on the outside and appear well, but most days I am holding back the pain I am in. Before judging someone with a chronic illness take the time to research it and have an understanding of what it is. The more education of these type of illnesses may lead to more research and maybe someday a cure. Below I have provided a couple links that help explain the two illnesses that I have. Take a moment and check it out.
http://fmaware.org/site/PageServerb3b4.html?pagename=fibromyalgia_symptoms
http://www.ic-network.com/whatisinterstitialcystitis/#what
Most don't understand the two major illnesses that I have...Fibro and IC. Some have heard of it but then see those stupid commercials like the one for Cymbalta that shows a person before they take the drug and then after. Later in the commercial they are all happy and stating that they got their life back.....that is a bunch of BS and I really dislike those commercials so much. That's not the way it is at all. I was on Cymbalta, but I didn't notice any change so my Dr. put me on another drug which helps with the depression, but not with the pain.
There are days when it takes me hours to just get out of bed because I ache all over so much and the littlest thing like putting on pants and going down the stairs is the hardest and most exhausting thing to do. Once I get downstairs I have to take my meds and hope that somehow one of them will help in some way. After I wake up I go back up the stairs and proceed to take my shower. The shower feels good, but some days it's so exhausting to just wash my hair. By the time I get out of bed, get the kids off to school and then feel good enough to take a shower it can be 12-2pm. Just try to imagine that.......it use to only take me an hour to do all of that just a few years ago. The rest of the day is spent just trying to get what chores I can done before my husband comes home. I do my best to do this so he is not overwhelmed once he walks through the door after a long day at work.
I was denied once already for disability. The unfortunate thing, among many, about having Fibro and IC is that Disability does not always consider them a disability! Seriously! How can they not after just reading a short version of what my day is like. I am a member of a couple Fibro groups on Facebook and all of our stories are all very similar with the pain we live with every day. Some have been able to get disability and others have been fighting for years. If your application isn't worded according to their expectations then you are denied. It takes a lot of support from Dr's and documentation to get accepted the first time applying. I have to start all over again now that I have a newer more recent diagnosis. I'm working on how to word it correctly and trying to do my homework on that process so I don't get denied again. Thankfully I have a Urologist who offered to document meticulously and write a personal letter to Social Security stating that I am unable to work at a job due to my limitations. If I do get denied again then I will have to get a Social Security lawyer and fight to have it changed.
In the meantime, we are hardly making it financially and this is due to my disabilities. I feel very responsible for my lack of employment and see what it's doing to our family. I was once able to work over 50 hours on some weeks and bring in a decent income. I was a single parent for close to 10 years and didn't struggle even half as much as we are now. Financial stress causes a lot of stress on my body which doesn't help with trying to manage the pain.
It's hard having an illness that most people don't understand well enough. With a lot of diseases you look sick, but with Fibro and IC it's different which makes it difficult for others to understand. I may look ok on the outside and appear well, but most days I am holding back the pain I am in. Before judging someone with a chronic illness take the time to research it and have an understanding of what it is. The more education of these type of illnesses may lead to more research and maybe someday a cure. Below I have provided a couple links that help explain the two illnesses that I have. Take a moment and check it out.
http://fmaware.org/site/PageServerb3b4.html?pagename=fibromyalgia_symptoms
http://www.ic-network.com/whatisinterstitialcystitis/#what
Sunday, October 9, 2011
I'm Back!
Whoa! Just realized that it's been awhile since I last blogged. My husband has been on vacation for the last week which has kept me occupied. We just celebrated our 4th Wedding Anniversary on the 6th! That was an awesome day! We kept it simple and budget friendly and it was perfect! Went out to "Heidi's" which is our local family friendly restaurant.....or more like the place all the older people go to eat. That day we went for lunch while the kids were in school. It was nice, quiet and NO interruptions! I realized that day how much time my husband and I don't get often enough. Things have been so stressful in our lives these days that we really have not had much alone time to just relax, laugh and have a good conversation.
Most of the week while my husband has been on vacation we just hung out and enjoyed each others company. The only thing that sucked on his vacation was me having to go to the hospital and our daughter having to go to Urgent Care. I was having some symptoms that were concerning and had to have checked out. Our daughter was riding her scooter and fell on her face, cut her lip up pretty good and hurt her hip. I decided it would be best to get her checked out because she was not wearing her helmet ( Grrrr ) and there's always a possibility that she could have bumped her head. I don't take head bumps lightly since I use to work in the medical field and the majority of patients being admitted had some type of head injury. So, for a mother's peace of mind I had her evaluated which she turned out to be fine.....well, mostly. Falling on cement on your face hurts like hell. I would know because I've done that years ago. That will have to be another story I will save for a different time though. I am just thankful our daughter is going to be ok. That is what matters the most! At this point we need a family ER discount! My son broke his thumb twice in just a few months so the ER probably knows us by now. Ha ha!
Well, that's about it for now I suppose. Blogging late at night sometimes causes my mind to go blank. I will leave it here for now and try to blog again soon. Hopefully no ER visits between now and then.
Take care!
Most of the week while my husband has been on vacation we just hung out and enjoyed each others company. The only thing that sucked on his vacation was me having to go to the hospital and our daughter having to go to Urgent Care. I was having some symptoms that were concerning and had to have checked out. Our daughter was riding her scooter and fell on her face, cut her lip up pretty good and hurt her hip. I decided it would be best to get her checked out because she was not wearing her helmet ( Grrrr ) and there's always a possibility that she could have bumped her head. I don't take head bumps lightly since I use to work in the medical field and the majority of patients being admitted had some type of head injury. So, for a mother's peace of mind I had her evaluated which she turned out to be fine.....well, mostly. Falling on cement on your face hurts like hell. I would know because I've done that years ago. That will have to be another story I will save for a different time though. I am just thankful our daughter is going to be ok. That is what matters the most! At this point we need a family ER discount! My son broke his thumb twice in just a few months so the ER probably knows us by now. Ha ha!
Well, that's about it for now I suppose. Blogging late at night sometimes causes my mind to go blank. I will leave it here for now and try to blog again soon. Hopefully no ER visits between now and then.
Take care!
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