You know the days where you think things cant possibly get any worse... and then they do? This was definately one of those days.
Let me paint you a picture of my day... I wake up, unable to move because the pain has set in quite horribly this morning. (When i say wake up, i don't actually mean from sleep, because 2 days ago i ran out of my sleeping pills which were the only thing that could render my body sleep. This is just a state of exhaustion, in which my mind shuts down only to a certain point.) Knowing i have only 4 pain pills left, I struggle to get out of my bed, moaning from the pain it brings... going straight for the only thing that will bring me a little relief-- vicodin.
Mom sees the pain in my eyes as i slowly make my way to the kitchen. No longer able to watch me in pain day after day, she picks up the phone and calls my doctor. An appointment is made... I will now have to explain that all of my symptoms have returned and face the fact that the chemo i have been working so hard to avoid, is now quite possibly unavoidable. I break down, sobbing.
Taxed by the decision only i can make, i sit, silent, lost in my thoughts.Will i be letting down those who want me to continue with the natural route? Have i tried hard enough? By choosing the chemo, am i taking the easy way out? All i can do is wait and try to sort out the pro's and con's. The pain has finally pushed me to this point, though i am not ready to face it.
The phone rings... Its my case worker from the Department of Human Services. My application for the Retroactive Medicaid has been denied, on the grounds of, "I have not been disabled long enough to be eligable for help".
My mind is blank... I havent been sick long enough for them? How about a few more days, a few more months, a few more years... trapped, bound to a life of pain and missing out on the dreams i had for myself. What would make them happy? How much time do i need to suffer in order for me to be "good enough" for help?
Its days like this that i feel going on is impossible. Where is the Lord in all of this? Why on earth am i sick? Why, Why, Why.
Frustrated, confused, and angry... i push forward, wondering what tomorrow will bring.
Saturday, May 29, 2010
Sunday, May 23, 2010
Back to Blogging
With a little friendly nudging from my dear sister in law, i am finally paying the much needed attention to my blog. You will have to forgive me for taking so long to continue my rantings about life with my disesase... I was gone for a week in Tennesse to see some close friends graduate, and since my return, my health has been a bit of a challenge.
For the past 2 1/2 weeks the pain that i worked so dearly to keep away has returned... Its been a roller coaster trying to keep myself going, and all i want to do is give up. It seems as though, no matter what i try, the aches and pains are more prominent than ever. Today its my hands, elbows, and the most wicked sore neck imaginable. Unfortunately the Vicodin that once eased the pain, now merely has the effect of a single dose of tylenol. I have decided the "grin and bear it" theory works best for me now...
Being a 22 year old, RN, has been so much different than i had imagined. Unable to work, constant pain, and the want to stay home, rather than be out with friends.. wasnt the idea i had run through my mind on those final stressful days of college. Yes, plans have changed, my have they changed. Unfortunately, throwing a pity party for myself wont make the circumstances better either...
So here's to another day... Aching from head to toe, but fighting to move on despite it. :-) And hoping each tomorrow is just a little bit better!
For the past 2 1/2 weeks the pain that i worked so dearly to keep away has returned... Its been a roller coaster trying to keep myself going, and all i want to do is give up. It seems as though, no matter what i try, the aches and pains are more prominent than ever. Today its my hands, elbows, and the most wicked sore neck imaginable. Unfortunately the Vicodin that once eased the pain, now merely has the effect of a single dose of tylenol. I have decided the "grin and bear it" theory works best for me now...
Being a 22 year old, RN, has been so much different than i had imagined. Unable to work, constant pain, and the want to stay home, rather than be out with friends.. wasnt the idea i had run through my mind on those final stressful days of college. Yes, plans have changed, my have they changed. Unfortunately, throwing a pity party for myself wont make the circumstances better either...
So here's to another day... Aching from head to toe, but fighting to move on despite it. :-) And hoping each tomorrow is just a little bit better!
Thursday, April 22, 2010
The Pill Reminder
Sorry for the long lag in posts. The computer has been completely down, and I am just now able resume my blogging :-)
Today has proved to be a beautiful day. Besides the usual little aches and pains i am feeling well, and keeping my head up.
Sadly enough i am excited because today i received something in the mail that i have been searching for, for quite some time now, and i am tickled to death with it. Unfortunately the object of my affection is just a pill reminder!
I have so many pills and supplements that i take on a daily basis that i have a whole section of our countertop dedicated to my pill bottles. In an effort to clean off the countertop, and make it easier on myself to have my medications with me where ever i am... i needed a pill reminder that would be A) big enough to hold my pills and B) small enough to grab and stick in my purse
After searching all the local drug stores for one that would accomodate me, i came up empty handed. Finally i found one online, and it just arrived a few hours ago!
I gladly took all my pill bottles outside, sat on a blanket in the sun, and got all my pills put in the containers for the next whole week.
Bye-bye bottles and hello empty countertops!
Oh the things that amuse me these days :-)
Today has proved to be a beautiful day. Besides the usual little aches and pains i am feeling well, and keeping my head up.
Sadly enough i am excited because today i received something in the mail that i have been searching for, for quite some time now, and i am tickled to death with it. Unfortunately the object of my affection is just a pill reminder!
I have so many pills and supplements that i take on a daily basis that i have a whole section of our countertop dedicated to my pill bottles. In an effort to clean off the countertop, and make it easier on myself to have my medications with me where ever i am... i needed a pill reminder that would be A) big enough to hold my pills and B) small enough to grab and stick in my purse
After searching all the local drug stores for one that would accomodate me, i came up empty handed. Finally i found one online, and it just arrived a few hours ago!
I gladly took all my pill bottles outside, sat on a blanket in the sun, and got all my pills put in the containers for the next whole week.
Bye-bye bottles and hello empty countertops!
Oh the things that amuse me these days :-)
Monday, April 12, 2010
My Story Part 5: Life After Diagnosis
Continued from My Story Part 4...
It has been about 3 or 4 weeks since receiving my diagnosis and it has been up and down with each day. While my progress has been gonig well from being flat on my back immobile, to being pushed in a wheel chair, to walking with help, and now being able to move about on my own - my disease is far from cured. The things you see about me are fake. I look healthy and can walk by myself only because the dose of steroids i am taking is so high that it masks what is really going on in my body. In a perfect world i could just say on the steroids and eventually work back enough energy to enter back into my seemingly normal life. Unfortunately this isnt the case. Doctors wont leave me on this medication because it is so harmful with longterm use. I already have a weinging process planned (by my physician) to come off the prednisone and onto a low dose chemotherapy (Methotrexate) for atleast 2 years. All this to which she is unable to tell me if it will adequately control my symptoms, if stronger or other meds will be needed in conjuction, or what my pain level will be from day to day, or whether the ER will be a place i frequent every couple days, weeks or months.
In conjunction with the medical regiment set up by my Rheumatologist, i have consulted with doctors that rely on natural healing as well. I have cut out most foods that normally consist in a diet and replaced with with whole foods. I eat almost all raw fresh fruits and vegetables, very little cooked, and consume fresh squeezed vegetable and fruit juices. I also take upwards of 25 different natural herbal supplements daily, all in effort to help restore some sort of balance and health to my body that has taken such a severe beating over the past couple months. My effeorts are merely to help myself as possible. At this point my life revolves around when to take my nect pill, juice, meal, doctor, visit, or upcoming lab draw.
I've taken the time to write all this out- and while it may seem to portray a good picture of what its been like, i can promise it doesnt even begin to skim the surface of the pain and suffering it has brought not only on myself, but also my family. I want to make it clear that just because i feel up to helping get groceries once a week or driving myself to the DHS office - that my condition maybe not be visible to the naked eye all the time, but that it is a taxing and extremely hard thing to deal with - both physically and emotionally.
Graduation was one of the most exciting days for me, and passing my Nursing boards to get my license was as equally amazing. I did my part and took time and serious effort, not to mention lots of money - much of which i have in loans that will be out of defferement in 3 months, to get educated and do my part to help others. I love Nursing with a passion - All i could think about was getting out and working and having money to things and go places. Instead life took a different turn for me right now. I was insured through school and of course would have been through a job, but this disease didnt wait for that to happen.
So hear i am. A responsible, educated Nurse with unending medical bills from and unexpected disease that showed up overnight. If i thought i could make it through even a couple hours of a regular Nurses shift i would be there in a heartbeat. The truth is - i am lucky and happy if i wake up feeling like i have the energy to make it another day with this disease.
For all its worth im begging to help with my bills - certainly cant pay them and its just one more thing that tops my list of things to worry about each day. If and when my doctors and i find a medication regiment that works and i find the energy and regain the muscle capacity that i lost - you can bet you'll see my face at one of the local hospitals or doctors offices - doing what i love best - caring for other people.
So there you have it... thats my story in a nut shell, as written to accompany my medicaid application to help pay my medical bills. Now that you know my story i will get on with some of the more "funny" sides to disease, as well as some not so "funny" times. Hope you enjoy the blogs!
It has been about 3 or 4 weeks since receiving my diagnosis and it has been up and down with each day. While my progress has been gonig well from being flat on my back immobile, to being pushed in a wheel chair, to walking with help, and now being able to move about on my own - my disease is far from cured. The things you see about me are fake. I look healthy and can walk by myself only because the dose of steroids i am taking is so high that it masks what is really going on in my body. In a perfect world i could just say on the steroids and eventually work back enough energy to enter back into my seemingly normal life. Unfortunately this isnt the case. Doctors wont leave me on this medication because it is so harmful with longterm use. I already have a weinging process planned (by my physician) to come off the prednisone and onto a low dose chemotherapy (Methotrexate) for atleast 2 years. All this to which she is unable to tell me if it will adequately control my symptoms, if stronger or other meds will be needed in conjuction, or what my pain level will be from day to day, or whether the ER will be a place i frequent every couple days, weeks or months.
In conjunction with the medical regiment set up by my Rheumatologist, i have consulted with doctors that rely on natural healing as well. I have cut out most foods that normally consist in a diet and replaced with with whole foods. I eat almost all raw fresh fruits and vegetables, very little cooked, and consume fresh squeezed vegetable and fruit juices. I also take upwards of 25 different natural herbal supplements daily, all in effort to help restore some sort of balance and health to my body that has taken such a severe beating over the past couple months. My effeorts are merely to help myself as possible. At this point my life revolves around when to take my nect pill, juice, meal, doctor, visit, or upcoming lab draw.
I've taken the time to write all this out- and while it may seem to portray a good picture of what its been like, i can promise it doesnt even begin to skim the surface of the pain and suffering it has brought not only on myself, but also my family. I want to make it clear that just because i feel up to helping get groceries once a week or driving myself to the DHS office - that my condition maybe not be visible to the naked eye all the time, but that it is a taxing and extremely hard thing to deal with - both physically and emotionally.
Graduation was one of the most exciting days for me, and passing my Nursing boards to get my license was as equally amazing. I did my part and took time and serious effort, not to mention lots of money - much of which i have in loans that will be out of defferement in 3 months, to get educated and do my part to help others. I love Nursing with a passion - All i could think about was getting out and working and having money to things and go places. Instead life took a different turn for me right now. I was insured through school and of course would have been through a job, but this disease didnt wait for that to happen.
So hear i am. A responsible, educated Nurse with unending medical bills from and unexpected disease that showed up overnight. If i thought i could make it through even a couple hours of a regular Nurses shift i would be there in a heartbeat. The truth is - i am lucky and happy if i wake up feeling like i have the energy to make it another day with this disease.
For all its worth im begging to help with my bills - certainly cant pay them and its just one more thing that tops my list of things to worry about each day. If and when my doctors and i find a medication regiment that works and i find the energy and regain the muscle capacity that i lost - you can bet you'll see my face at one of the local hospitals or doctors offices - doing what i love best - caring for other people.
So there you have it... thats my story in a nut shell, as written to accompany my medicaid application to help pay my medical bills. Now that you know my story i will get on with some of the more "funny" sides to disease, as well as some not so "funny" times. Hope you enjoy the blogs!
My Story Part 4: Rheumatic Fever
continued from My Story Part 3...
On the 24th of February i reached yet another unbearable point in my illness, and i was rushed back to the emergency room. Amazingly the same doctor that had seen me in the ER the too previous two time was there and stayed overtime to assess me and make sure I was taken care of before he left. My resident doctor was also there and began yet another assessment on my feverish, aching body. This was by far the worst my pain had been so far in this process, and all I could think about was getting relief. The doctor, knowing the pain levels that I was in immediately ordered dilaudid for me, and after countless tries and misses, the nurses established IV access and got me the pain relief I so badly needed. Operating on the solid ground of the fact that none of my doctors had a clue what wasw wrong, we started again from sqare one. My assessment revealed a soft murmor in my heart, so speculation of Rheumatic Fever began to arise. (i would later come to find out that the murmor -inflammation of my heart tissue- and the occasional pain upon taking a deep breath - inflammation of my lung tissue- are both symptoms of my disease.
With my blood cultures continuing to come back negative, but my blood indicative of an infection, doctors were baffled. Again i was admitted, treated with fluids, antibiotics, and a steady stream of dilaudid for the pain. It was at this point that they considered the heart murmor enough relevance to check it out and treat me for Rheumatic Fever, while they continued searching for more answers. (My symptoms fit the profile of so many things, so one diagnosis could never be agreed on by my medical team that now involved about 10 different doctors and specialists) I was given extremely high doses of aspirin and underwent an EKG and echocardiogram - both of which came back as normal. It was during this time that we first heard mention of Adult Still's Disease. The infectious disease doc ran TB tests, HIV/AIDS, leukemia, lymphoma, and many more tests, all of which came back negative - leading her to thing the "strep" was just a "red herrin" getting the attention as the main problem when it was likely just the final trigger. All my other doctors "respectfully disagreed" and after 4 days of pokes, prods and pain i was discharged and being treated for Rheumatic Fever.
The aspirin (975 mg/day) didnt seem to make a difference, and i took Vicodin around the clock just to be able to function. 6 days after being discharged my mom realized that these meds werent cutting it, and if something didnt change fast we would be back in the hospital before the weekend was over. We called the Rheumatologist that i was to follow up with and she prescribed me Prednisone (60mg/day) - a very high dose - to mask my terrible symptoms. It was at this point when things started to turn around and make sense. I saw her (my rheumatologist) later that week and she started to piece together my labs and symptoms. Finally a week or so after that - 6 1/2 weeks to date, she gave me the final, accurate, diagnosis of Adult Still's Disease...
On the 24th of February i reached yet another unbearable point in my illness, and i was rushed back to the emergency room. Amazingly the same doctor that had seen me in the ER the too previous two time was there and stayed overtime to assess me and make sure I was taken care of before he left. My resident doctor was also there and began yet another assessment on my feverish, aching body. This was by far the worst my pain had been so far in this process, and all I could think about was getting relief. The doctor, knowing the pain levels that I was in immediately ordered dilaudid for me, and after countless tries and misses, the nurses established IV access and got me the pain relief I so badly needed. Operating on the solid ground of the fact that none of my doctors had a clue what wasw wrong, we started again from sqare one. My assessment revealed a soft murmor in my heart, so speculation of Rheumatic Fever began to arise. (i would later come to find out that the murmor -inflammation of my heart tissue- and the occasional pain upon taking a deep breath - inflammation of my lung tissue- are both symptoms of my disease.
With my blood cultures continuing to come back negative, but my blood indicative of an infection, doctors were baffled. Again i was admitted, treated with fluids, antibiotics, and a steady stream of dilaudid for the pain. It was at this point that they considered the heart murmor enough relevance to check it out and treat me for Rheumatic Fever, while they continued searching for more answers. (My symptoms fit the profile of so many things, so one diagnosis could never be agreed on by my medical team that now involved about 10 different doctors and specialists) I was given extremely high doses of aspirin and underwent an EKG and echocardiogram - both of which came back as normal. It was during this time that we first heard mention of Adult Still's Disease. The infectious disease doc ran TB tests, HIV/AIDS, leukemia, lymphoma, and many more tests, all of which came back negative - leading her to thing the "strep" was just a "red herrin" getting the attention as the main problem when it was likely just the final trigger. All my other doctors "respectfully disagreed" and after 4 days of pokes, prods and pain i was discharged and being treated for Rheumatic Fever.
The aspirin (975 mg/day) didnt seem to make a difference, and i took Vicodin around the clock just to be able to function. 6 days after being discharged my mom realized that these meds werent cutting it, and if something didnt change fast we would be back in the hospital before the weekend was over. We called the Rheumatologist that i was to follow up with and she prescribed me Prednisone (60mg/day) - a very high dose - to mask my terrible symptoms. It was at this point when things started to turn around and make sense. I saw her (my rheumatologist) later that week and she started to piece together my labs and symptoms. Finally a week or so after that - 6 1/2 weeks to date, she gave me the final, accurate, diagnosis of Adult Still's Disease...
My Story Part 3: "Strep"
continued from My Story Part 2...
This illness has flipped my life completely upside down over the past (about) 9 weeks. I am typically a very outgoing, energetic, driven person. In December 2009 i graduated with honors from Southern Adventist University, School of Nursing. On January 14, 2010 i took and passed my boards, earning me my Registered Nurse License. I returned home, anxious to start working and find a place of my own. I had an interview and possible housing lined up, and boy was i excited. Two weeks into this process my first symptom showed up. 24 hours later i was in the misdt of a serious illness.
From the onset of my symptom it took 6 1/2 weeks to diagnose me with what we would learn was Adult Still's Disease. Over the course of this time i went through a literal hell. My doctors thought it was just a strep infection at first, but after becoming severely dehydrated and not feeling any better, i was admitted to the hospital for fluids, antibiotics, and meds to control the now tremendous amount of muscle and joint pain i was in. I was treated and released at 36 hours, and went home in hopes that this was over. I felt great the next day and thought all was well until about 24 hours after my discharge when the anti-inflammatory medication began to wear off. The rash, pain, and fevers started to creep in and become more severe with each passing day. Desparate to find comfort i visited my doctor almost daily for two weeks, each time getting a coctail of new prescriptions and shots to get rid of the "strep".
Finally after two weeks of antibiotics of every kind and around-the-clock apin meds, i spiked a severe fever and was in so much pain that i was neraly unconcious. My doctor took one look at me and said i needed a specialist and a bigger hospital than Niles had to offer. He was out of ideas on what was wrong. I was rushed the emergency room by my mom and dad only to be told that it was indeed just a "really bad" strep infection. I recieved more fluids, antibiotics and pain medication before being released to home. Two days laster the excruciating pain that engulfed my entire body and a fever of 103.1 landed me back in the ER. The same physician that saw me two days before was on duty and immediately took over my case. He know there was something more serious than strep going on at this point. As i floated in and out of conciousness from the ravaging pain and fever, i began undergoing a serious of tests. I had a head CT, a chest x-ray, lumbar puncture, and an unmentionable amount of labs drawn from my bruised and blown veins, all before receiving any medication to help control my pain. (the doctor couldnt give me anything that would make me more "out of it" than i already was. He needed me to be able to follow directions and focus on the tests being done - especially the spinal tap) I screamed and cried throughout most of it because any touch of my skin, including my own, sent the pain over the edge. The only reason i made it was because i knew as soon as they were done i would get some kind of relief - as promised by my doctor.
I was admitted that night and spent the next 3 days being poked and proded by a slew of different medical team members. I was seen by my attending doctor, a residnt, a rheumatologist, an infectious disease specialist, a pharmacist and many others to try to connect the dots of my bizzare symptoms and why they werent responding to the antibiotics that should long ago put them to rest. All my labs and blood cultures came back negative and my blood was indicative of an infection, though one was not visibly present. Realizing that they are merely "babysitting" me in the hospital after 3 days, i was discharged with yet more antibiotics, antiinflammatories, and pain medications.
I survived about another week at home in so much pain that i stayed in bed all day to avoid any movement that would increase it. Someone would have to be on either side of me to get me to the bathroom, and if i could stomach any food or drink it would be hand fed to me by my mother. Although i was in bed all day and all night, i could probably count the hours of sleep i got the whole month of February on two hands. Pain and discomfort were my constant companion, and didnt allow my body any rest. Showers and personal hygiene were not high on my list of priorities. On days that i could stand to have anyone touch me, my mother would shower me and wash my hair as i sat helpless in the shower - unable to lift my arms to even wash my own hair or body...
This illness has flipped my life completely upside down over the past (about) 9 weeks. I am typically a very outgoing, energetic, driven person. In December 2009 i graduated with honors from Southern Adventist University, School of Nursing. On January 14, 2010 i took and passed my boards, earning me my Registered Nurse License. I returned home, anxious to start working and find a place of my own. I had an interview and possible housing lined up, and boy was i excited. Two weeks into this process my first symptom showed up. 24 hours later i was in the misdt of a serious illness.
From the onset of my symptom it took 6 1/2 weeks to diagnose me with what we would learn was Adult Still's Disease. Over the course of this time i went through a literal hell. My doctors thought it was just a strep infection at first, but after becoming severely dehydrated and not feeling any better, i was admitted to the hospital for fluids, antibiotics, and meds to control the now tremendous amount of muscle and joint pain i was in. I was treated and released at 36 hours, and went home in hopes that this was over. I felt great the next day and thought all was well until about 24 hours after my discharge when the anti-inflammatory medication began to wear off. The rash, pain, and fevers started to creep in and become more severe with each passing day. Desparate to find comfort i visited my doctor almost daily for two weeks, each time getting a coctail of new prescriptions and shots to get rid of the "strep".
Finally after two weeks of antibiotics of every kind and around-the-clock apin meds, i spiked a severe fever and was in so much pain that i was neraly unconcious. My doctor took one look at me and said i needed a specialist and a bigger hospital than Niles had to offer. He was out of ideas on what was wrong. I was rushed the emergency room by my mom and dad only to be told that it was indeed just a "really bad" strep infection. I recieved more fluids, antibiotics and pain medication before being released to home. Two days laster the excruciating pain that engulfed my entire body and a fever of 103.1 landed me back in the ER. The same physician that saw me two days before was on duty and immediately took over my case. He know there was something more serious than strep going on at this point. As i floated in and out of conciousness from the ravaging pain and fever, i began undergoing a serious of tests. I had a head CT, a chest x-ray, lumbar puncture, and an unmentionable amount of labs drawn from my bruised and blown veins, all before receiving any medication to help control my pain. (the doctor couldnt give me anything that would make me more "out of it" than i already was. He needed me to be able to follow directions and focus on the tests being done - especially the spinal tap) I screamed and cried throughout most of it because any touch of my skin, including my own, sent the pain over the edge. The only reason i made it was because i knew as soon as they were done i would get some kind of relief - as promised by my doctor.
I was admitted that night and spent the next 3 days being poked and proded by a slew of different medical team members. I was seen by my attending doctor, a residnt, a rheumatologist, an infectious disease specialist, a pharmacist and many others to try to connect the dots of my bizzare symptoms and why they werent responding to the antibiotics that should long ago put them to rest. All my labs and blood cultures came back negative and my blood was indicative of an infection, though one was not visibly present. Realizing that they are merely "babysitting" me in the hospital after 3 days, i was discharged with yet more antibiotics, antiinflammatories, and pain medications.
I survived about another week at home in so much pain that i stayed in bed all day to avoid any movement that would increase it. Someone would have to be on either side of me to get me to the bathroom, and if i could stomach any food or drink it would be hand fed to me by my mother. Although i was in bed all day and all night, i could probably count the hours of sleep i got the whole month of February on two hands. Pain and discomfort were my constant companion, and didnt allow my body any rest. Showers and personal hygiene were not high on my list of priorities. On days that i could stand to have anyone touch me, my mother would shower me and wash my hair as i sat helpless in the shower - unable to lift my arms to even wash my own hair or body...
My Story Part 2: Looks Can Be Deceiving
Sorry its been so much time since my last post. My computer is on the fritz and only lets me on the internet when its conveinent for itself... Funny how its never when i would like to get on!
So I promised I would tell the story of my disease, and will do so in the next few posts. I am in the process of trying to get some help with my medical bills by applying for Medicaid. If any of you have ever done this you know there are literally booklets and booklets of paperwork to fill out. They ask a million questions on my "current" activities, how and what my days are filled with, can I cook or clean, and so forth. At the end of all those questions they gave me 3 little lines to tell them anything else that I felt was important about my disease. Needless to say, 3 little lines wouldnt do me any justice, so during one of my sleepless nights I wrote Medicaid a letter telling them "a little about my disease"... The story they didnt see and remains hidden to the average person.
It goes like this....
When i walked into the Department of Human Services (DHS) office last Thursday to pick up the medicaid paperwork, the lady at the counter was rather rude to me. Because I looked pretty normal she probably assumed I was another case of accidental pregnancy or a highschool dropout looking to the state for some "free hand-me-outs". What this lady didnt see was the fact that I pushed myself to shower and look halfway presentable, serach out the directions to the DHS office - only to get lost and make it there five minutes before it closed -- just to get this application. She also didnt spend that evening with me as i exhaustingly filled out the booklet so i could be prepared to return for a walk-in interview the next morning.
Friday morning I returned to the DHS office, paperwork in hand, and was greeted by a different lady at the window, who was very nice and gave me my instructions to wait for the next available case worker. I didtn have to wait long before they called my name and the woman that took my case was very kind and efficient. However, i guarantee both of thse women could see no physical problem with me. Nor did they know that i fought myself trying to shower and get ready because i had to wake up 3 hours ealier than usual - a concept my sleeping pill, Ambien, doesnt grasp. They also didnt know that this was a good day for me - one where the aches and pains didnt plague me as bad. Nor did they see me the rest of the day as i lounged around the house because my energy level was shot just from doing this one task that day. I suppose my point is that if you see me out of the house, its only because im having a descent day and chances are i havent been out for long and im probably headed home soon. Looks can be pretty deceiving...
So I promised I would tell the story of my disease, and will do so in the next few posts. I am in the process of trying to get some help with my medical bills by applying for Medicaid. If any of you have ever done this you know there are literally booklets and booklets of paperwork to fill out. They ask a million questions on my "current" activities, how and what my days are filled with, can I cook or clean, and so forth. At the end of all those questions they gave me 3 little lines to tell them anything else that I felt was important about my disease. Needless to say, 3 little lines wouldnt do me any justice, so during one of my sleepless nights I wrote Medicaid a letter telling them "a little about my disease"... The story they didnt see and remains hidden to the average person.
It goes like this....
When i walked into the Department of Human Services (DHS) office last Thursday to pick up the medicaid paperwork, the lady at the counter was rather rude to me. Because I looked pretty normal she probably assumed I was another case of accidental pregnancy or a highschool dropout looking to the state for some "free hand-me-outs". What this lady didnt see was the fact that I pushed myself to shower and look halfway presentable, serach out the directions to the DHS office - only to get lost and make it there five minutes before it closed -- just to get this application. She also didnt spend that evening with me as i exhaustingly filled out the booklet so i could be prepared to return for a walk-in interview the next morning.
Friday morning I returned to the DHS office, paperwork in hand, and was greeted by a different lady at the window, who was very nice and gave me my instructions to wait for the next available case worker. I didtn have to wait long before they called my name and the woman that took my case was very kind and efficient. However, i guarantee both of thse women could see no physical problem with me. Nor did they know that i fought myself trying to shower and get ready because i had to wake up 3 hours ealier than usual - a concept my sleeping pill, Ambien, doesnt grasp. They also didnt know that this was a good day for me - one where the aches and pains didnt plague me as bad. Nor did they see me the rest of the day as i lounged around the house because my energy level was shot just from doing this one task that day. I suppose my point is that if you see me out of the house, its only because im having a descent day and chances are i havent been out for long and im probably headed home soon. Looks can be pretty deceiving...
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