Saturday, December 20, 2014
Tuesday, December 16, 2014
Insurance Issues, Why is that a problem for peolpe who need the help?
One of the biggest and unneeded stressors while fighting a chronic illness is having financial, and insurance issues. Dealing with medical debt can drive you straight into bankruptcy, and having you scrounging around for food at home, going to pantry's, seeking community help like your local church's, Salvation Army, and more. Job and Family Service's is suppose to be there to fill in the gap, but they have been too consume with catching and preventing fraudulent applicants we slip through the cracks.
I go through issues with Job and Family Service's for many reason, they no longer are providing social workers directly through their service. I'm young so people don't understand why I can not work at this current time. I think that comes from not looking at the case, they are just looking at the minimum to get through the phone call. Dealing with different services gives me the blues, and I wish I was able to work and get receive good insurance. But the fact is even though I'm getting better, I am not strong enough to work, my endurance to just get through a day is very low. Although my abilities have strengthen it takes a toll on my body. I use my strength to walk or clean my house, which I never have been able to get through cleaning my little apartment in one or two days. Then for the next few days I pay for it, I'm stuck in bed. Really wish I didn't have to deal with these different issues.
The truth is if I return to work or get regular insurance my chemotherapy or immune defeinciey drugs will not be covered. Not to mention all my medications are tier 3 and 4 drugs. Which means they are very costly or they or not covered at all.
What I found out here in Ohio they have two systems which determine Medicaid. You can do a job and family services application but if your denied, ask for an appeal or if your eligible through the OIES program. There is no information on this update and caseworker's do have to go out of they way because it's not connected to the OJFS. This program came out 2014, and still has a lot of bugs. But its worth the hassle if your medical bills exceed your yearly income. I know mines do, with all the hospitalization, infusions, and treatments.
Truth is no one is going to hand you or show you where you can get help. Each couple months I have to come up with back up plans, looking for medical assistance. I request Financial assistance forms from the hospital I'm treated commonly. I have to map out public assistance places like the pantry's, church's, local organizations as well as national foundation that give out scholarship's. As well as manufacturer discount's and assistance where they will help pay or pay for it all themselves because of my income. At this point I just need to save the information on my hard- drive cause I go through these issue's to often since I was diagnosed in 2013.
What I learn is people don't care what you are already fighting, you have to be your own advocate as much as possible or you will never get better. Your situation might get worse, which that was what happen to me until I started fighting and learning how the health system is setup and works. That is very important no matter where you live, each county and state go by different rules. I'm finding that it is more important than ever to be a register voter so we can vote for our Medicaid and Medicare issues. You have to write in to your local representatives, to get them to understand that society is still having issues with the health system. Speak for yourself, don't let no one else speak for you. In all this I'm saying you must fight in every aspect hard to receive improvement and just have a quality of life.
I go through issues with Job and Family Service's for many reason, they no longer are providing social workers directly through their service. I'm young so people don't understand why I can not work at this current time. I think that comes from not looking at the case, they are just looking at the minimum to get through the phone call. Dealing with different services gives me the blues, and I wish I was able to work and get receive good insurance. But the fact is even though I'm getting better, I am not strong enough to work, my endurance to just get through a day is very low. Although my abilities have strengthen it takes a toll on my body. I use my strength to walk or clean my house, which I never have been able to get through cleaning my little apartment in one or two days. Then for the next few days I pay for it, I'm stuck in bed. Really wish I didn't have to deal with these different issues.
The truth is if I return to work or get regular insurance my chemotherapy or immune defeinciey drugs will not be covered. Not to mention all my medications are tier 3 and 4 drugs. Which means they are very costly or they or not covered at all.
What I found out here in Ohio they have two systems which determine Medicaid. You can do a job and family services application but if your denied, ask for an appeal or if your eligible through the OIES program. There is no information on this update and caseworker's do have to go out of they way because it's not connected to the OJFS. This program came out 2014, and still has a lot of bugs. But its worth the hassle if your medical bills exceed your yearly income. I know mines do, with all the hospitalization, infusions, and treatments.
Truth is no one is going to hand you or show you where you can get help. Each couple months I have to come up with back up plans, looking for medical assistance. I request Financial assistance forms from the hospital I'm treated commonly. I have to map out public assistance places like the pantry's, church's, local organizations as well as national foundation that give out scholarship's. As well as manufacturer discount's and assistance where they will help pay or pay for it all themselves because of my income. At this point I just need to save the information on my hard- drive cause I go through these issue's to often since I was diagnosed in 2013.
What I learn is people don't care what you are already fighting, you have to be your own advocate as much as possible or you will never get better. Your situation might get worse, which that was what happen to me until I started fighting and learning how the health system is setup and works. That is very important no matter where you live, each county and state go by different rules. I'm finding that it is more important than ever to be a register voter so we can vote for our Medicaid and Medicare issues. You have to write in to your local representatives, to get them to understand that society is still having issues with the health system. Speak for yourself, don't let no one else speak for you. In all this I'm saying you must fight in every aspect hard to receive improvement and just have a quality of life.
Monday, December 15, 2014
Sunday, December 14, 2014
MS Demographics
The MS in America Study was conducted over the internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by Multiple Sclerosis.
The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%.
Section 1: Demographics & Early Signs of MS
MS in America Participant Demographic
Age
Gender
n= 3,425 Most Participants First Experience MS Symptoms in their 20’s or 30’s…
…but aren’t diagnosed until their 30’s or 40’s
To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.
The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.
http://multiplesclerosis.net/ms-in-america-2013/
Friday, December 12, 2014
Fundraising for MS Walk
How many times do you get the stairs of people, but no one ever ask you what's wrong. I believe many of us would wish we had our life's before things began to happen. No matter how crappy it may have been. It seems that what makes me feel better every time I can get my story out. I can forget many things, but I will never forget when I got diagnosed. So I tell it, for a while I felt like people thought I was having a pity party. In actuality I was just trying to get it out and warn people life is never what we expect it to be. But how we make of it when we work with what we have been given. This past week, I don't know if any one has been paying attention but the MS Walk's for 2015 are about to begin. I think it's a excellent opportunity to give back, pay it forward, or just support. I myself have began to fundraise, I'm scared because I've done so much for other's but never been a success for advocating for myself. So this is my goal to raise a thousand dollars, and if I reach that expand. Accomplishment is everything to me. Just finding the right way of doing things without being to loud, or proud. Not much has been raised yet although its only been a week. The biggest thing for me is to raise awareness about what I have, and tell others it's not something that is contagious, it's not like a std, nor like aids. But it's something that no one would predict in a total different scope of health. Help me raise awareness!
My fundraising site
Katrina Renee Hodge MS Walk 2015
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Tuesday, December 2, 2014
Natural Healing Methods
Herbs and Supplements as Multiple Sclerosis Natural Treatments
Multiple sclerosis is an autoimmune disorder. Like with other autoimmune disorders, you can take natural supplements that will help you better cope with the symptoms, and start regaining your health.Your goal using natural healing methods is to slow down and/or stop the overactive immune system. When you accomplish this, the body will stop destroying the myelin sheath around the nerves that is responsible for your symptoms.
Immunomodulators from Nature that Restore Immunity
To do this, use natural substances called immunomodulators. These supplements will help normalize the activities of the immune system by increasing the cytokine messenger molecules for the immune system. Immunomodulators will also decrease the number of inflammatory compounds, and by adding additional anti-inflammatory herbs, you can maximize the effects of this goal.Here’s a list of herbal immunomodulators with their normal dosages:
- Astragalus – 500 mg 3 to 4 times daily
- Eleuthero – up to 1200 mg for normal dosage but 4 grams is nontoxic
- Ganoderma – up to 5 grams daily
- Shitake mushrooms – 2 to 6 grams daily
- Panax ginseng – 900 mg up to three times daily
- Rhodiola rosea – up to 500 mg daily
- Shizandra – 1.5 to 6.0 grams daily
- Ashwagandha – 3 grams taken twice daily (you can add this in milk)
Another type of Immunomodulator to take could be probiotic supplements. For this one, generally only one capsule is taken daily, and it’s easier to work into your daily diet. Probiotics aren’t known to interfere with prescription medications. Select one that has about 12 different potent strains of bacterial flora in it, and contains a total of several billion bacteria.
Anti-Inflammatory Herb Combinations Work Well for Many People
Anti-inflammatory herb combinations have cropped up everywhere on the internet and at health food stores. These are also worth trying. Select one that contains four or more different herbs. The usual herbs used for anti-inflammation include devil’s claw, cat’s claw, turmeric, ginger and rosemary. Research studies on these show remarkable abilities to decrease inflammation in the body. And that’s what you need when you have multiple sclerosis.Similar to the immunomodulators, you’ll have to schedule these herbs in between your medications during the day. Aim for a good hour in between medications and herbs for safety. It’s not that the herbs are ‘bad’; it’s that the time in between the medications and herbs will prevent any interactions from occurring.
Friday, November 28, 2014
Happy Holiday's!
Cherish every moment, second of your life. Because God didn't have to show you mercy enough to live through this. Live through it!
Monday, November 24, 2014
The Fog..............
When my disease sorta had taken control of my life my thought process was so unclear, I couldn't think straight, remember anything, or place things in the right place. Lord, I couldn't even remember my shift at work. My body automatically shifted into survival mode,. It was sleep, and eat which opened a window for a whole lot of trouble. That's a entirely different subject. But the fog that's been in my brain lately has been a real handicap to me, let alone the many distraction of not taking my medications right, relationships woes, and the test in my spiritual state that I feel links with my natural or physical body. I'm continuously having to review what I just did, write, and appointments. That's pretty depression for someone at the age of thirty-two , who's been a manager, leader, student. All them things require a great level of memory, focus, and ability to multi-task. Right now I cant do none of them but I'm trying to remain hopeful. I've accomplish so much in such a short amount of time compared to what the doctors think.
Out of all the medications to cover up the symptoms, why can't someone give me something to cover up this.
Tuesday, November 18, 2014
I don't look like what I'm going through!
I was taught to never look like what I'm going through. When I was just a little girl, I don't know if any of my other cousins remember but I do. It was said when you feel your worst, that is when you are suppose to look your best. Many people don't realize with the two chronic illnesses I have my roller coaster or yo-yo gets a little steeper and the turns are a little sharper. It's hard to be surrounded by people who speculate instead of encourage. Our culture has destroyed anything that is to believe that is good and diminish the lights of people who shine. Negativity breeds like bacteria and hope is rarely, truly found without a price. Unless it is given from God. I often say to God please move me out of this place, period and time because sometimes in my heart, in all the matters that bother me this is not where I would see my personal sanctuary. But then I think ever so often flower's bloom in peculiar places. Coals have a process to turn into diamonds and gold is also perfected be the heat. There is beauty hidden in one's heart throughout all the imperfection's, no matter what a person looking in see's.
Then I started thinking why do I continue to look my best in front of such a rude, surely, sour acting group of people. Because it is a part of my equipment to fight, it makes me feel good to look good, it helps me smile when I don't even feel like it. I can sit back on snare remarks and gossip, just knowing I'm a good person inside and I most likely look better than you. God never meant for his people to look homely, unattractive, what you look like represents yourself before you ever open your mouth. So therefor that's what I do, it's me, it's who I am, take it or leave it. Put a sock in your mouth cause you don't know my story, you just see what's going on in my appearance. I was taught to present myself well. But you don't know what pain I endure, what it took for me to get dress, how I feel in a crowd. Thank God I don't look like what I been through.
Then I started thinking why do I continue to look my best in front of such a rude, surely, sour acting group of people. Because it is a part of my equipment to fight, it makes me feel good to look good, it helps me smile when I don't even feel like it. I can sit back on snare remarks and gossip, just knowing I'm a good person inside and I most likely look better than you. God never meant for his people to look homely, unattractive, what you look like represents yourself before you ever open your mouth. So therefor that's what I do, it's me, it's who I am, take it or leave it. Put a sock in your mouth cause you don't know my story, you just see what's going on in my appearance. I was taught to present myself well. But you don't know what pain I endure, what it took for me to get dress, how I feel in a crowd. Thank God I don't look like what I been through.
Get excited about New Drugs!
There will be several new drugs rolling out this coming year for the relapse-remitting folk. Although there is still no cure, medical research is starting to think outside the box with a different way to regenerate and repair damage cells and myelin. Regardless the Lord is still just one prayer away. http://buff.ly/1wP4FC5
Friday, November 7, 2014
For the Future will worry about itself !
Lester Kern Art Gallery
Matthew 6: 31-34
31 “Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For after all these things the Gentiles seek. For your heavenly Father knows that you need all these things. 33 But seek first the kingdom of God and His righteousness, and all these things shall be added to you. 34 Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.
Often many times I find myself worrying about my future because it's so uncertain. Living in uncertainty is one of the worst headspaces anyone can be. One of the best things I've always been able to do is plan, but I came down with MS and Gillian Barre it's like I can not see beyond what I am doing right now. I feel obligated to make a way for my self to survive, thrive, be successful. I'm talented at many things and have a variation of skills, but I cant think of what I want to do now. All I know is that I want to be a leader, well known for my skill level.
But as we all know anyone with this illness, who has a severer case knows it hard to remember what your doing walking in from room to room. Or how about just getting out of bed because your body wont exactly move in the morning's. I need to be a boss my own boss, but I don't know in what I should I specialize in. But I believe in God and I know he would order my steps in his word, grant my desires of my heart as long as I see this through
Wednesday, November 5, 2014
The Nightmares of Dating
In bed today because my doctor talked me into the flu shot. I had a relapse over a cold and a mix up in my medications. But any whoo I was thinking about some nightmares I've been having over a man sticking his tongue out like a snake force himself on me trying to kiss me after I clearly said no. So gross.....I was thinking that I had to be more open minded in dating, but I just realized I don't have to settle for someone that Im not attracted to. He is gross, this man has being a ladies man with being a gentlemen. The last straw for me was, Im still recovering from my relapse and Im very fatigued. As I was telling him I was tired, he made a comment "your always tired". I cant date no one who doesn't understand my illness, my symptoms are invisible but their are there. Im not ready to date, cause I can barely hold my composer when a smart comment is made. If we weren't in church I would've told him how out of place, out of style, and unchristian he truly was.
Being open minded and settling are two different things. I thought I had to settle because I wasn't sure if someone would still love me with my two illness that are very uncertain. I still deserve a gentlemen, who will honor my boundaries, respect the aspect of my illness, and support me. He was so gross and disgusting of a man, I've been having nightmares of the kiss we had. I feel so violated because I absolutely do not respect this man. Maybe, I should hold off on dating till I get myself together the way I would like to be.
KH
Being open minded and settling are two different things. I thought I had to settle because I wasn't sure if someone would still love me with my two illness that are very uncertain. I still deserve a gentlemen, who will honor my boundaries, respect the aspect of my illness, and support me. He was so gross and disgusting of a man, I've been having nightmares of the kiss we had. I feel so violated because I absolutely do not respect this man. Maybe, I should hold off on dating till I get myself together the way I would like to be.
KH
I failed
I was going good for a while, about two weeks ago I came down with a cold. It's still lingering, but triggered a relapse. Relapses but a kink in all your plans because you never know when they are actually happen. I caught and admitted to myself it was happening so it saved a lot of recovery time. Learning and planning through these different processes has become and art in just a manner of two years. I had put a support group together for myself, my connection of doctor's at the same hospital, my girlfriends with spare key's to my place and always a just in case bag packed away in my closet. With my father contact information every where someone would look. By going to a hospital within network of my physicians it save me so much time and effort of explaining my situation. They had all my medications and health history on file which contributed to a short stay in inpatient.
I still have yet to manage the art of managing my fatigue. It's a thin line between finding your new normal and over doing it.
KH
I still have yet to manage the art of managing my fatigue. It's a thin line between finding your new normal and over doing it.
KH
Saturday, October 18, 2014
Praying for a better day....
Sometime trying to appear normal is to much work. I loved that I looked normal on the outside, but something seems to be taking a toll on me. Definitely my neruo-mylitis is out of control. I'm paying a price for being with my friends today. Although it's days later. Finding a balance to not over doing it may be tougher than what I thought but being able to spend time with the girl's was all worth it. The past few days have been limited activities and a few more days to come will be netflexing. Just as long as we don't have a relapse is cool. I know in time, I'll be able to predict and judge better. Whatever state I'm in I still praise him because I'm still here and I'm still pushing towards my dreams.
Thursday, October 16, 2014
We have the power to change the outcome!
Sorry,
It's been a while since I've written. It's been on my mind , but I get so easily distracted. When your not obligated to do anything outside the minimum of your priorities, you scape goat your way by. Well, anyways here's the scope on me I've started walking again finally. I've transition from the wheelchair, to walker, to cane, and now rarely nothing at all. I still have to watch my balance here and there, but it's like I'm a little toddler taking off.
I have never been so grateful as am in this present time. I'm experiencing life in a differently way, appreciating and respecting the boundaries of my body, and abilities. This past weekend I was finally able to go out in a crowd of people and hang out with the girls. The thing was I saw things differently, I couldn't move that fast as others, and other hand I didn't want to. Just taking it all in, my experience's over the past few years have really changed my perspective.
We all want to get back to where we were in life, but now I feel that I should become a better person than I was before. What better time could I choose to change some negative habits. Sometimes we are chosen to slow down our life's for a reason. And many of our experiences are only temporary, even though we may have to carry a certain illness, or any change to us for life. Because I am sick doesn't give me a free pass to give up on hope, dreams, ambition. I have to many skills, experience, and character to just to lay it down or aside just because I'm experiencing an uncomfortable change in my life.
This little bit of progress is encouragement to me, I may never be the same but I can surely live with this change.
KH
It's been a while since I've written. It's been on my mind , but I get so easily distracted. When your not obligated to do anything outside the minimum of your priorities, you scape goat your way by. Well, anyways here's the scope on me I've started walking again finally. I've transition from the wheelchair, to walker, to cane, and now rarely nothing at all. I still have to watch my balance here and there, but it's like I'm a little toddler taking off.
I have never been so grateful as am in this present time. I'm experiencing life in a differently way, appreciating and respecting the boundaries of my body, and abilities. This past weekend I was finally able to go out in a crowd of people and hang out with the girls. The thing was I saw things differently, I couldn't move that fast as others, and other hand I didn't want to. Just taking it all in, my experience's over the past few years have really changed my perspective.
We all want to get back to where we were in life, but now I feel that I should become a better person than I was before. What better time could I choose to change some negative habits. Sometimes we are chosen to slow down our life's for a reason. And many of our experiences are only temporary, even though we may have to carry a certain illness, or any change to us for life. Because I am sick doesn't give me a free pass to give up on hope, dreams, ambition. I have to many skills, experience, and character to just to lay it down or aside just because I'm experiencing an uncomfortable change in my life.
This little bit of progress is encouragement to me, I may never be the same but I can surely live with this change.
KH
Tuesday, September 30, 2014
Thursday, September 25, 2014
Emojo's
Being sick can cause a whole range of emotion's. Often MS is linked with depression. Which I believe people can overcome. But sometimes it could just take one small thing to trigger those emotions to come flooding back. You have to control how you respond towards situations and people, if your like me sometimes you don't care. And negative influences, people, unresolved situations feed off that drama. It's often part of "leave the past in the past", but what if it hurts your future. I'm learning to let go and let God handle that situation.
Truthfully, I still don't know what to do when it comes peeping around the corner. All I know is to cut the snake head off. Cut off anything linked to it. We often hang on to past situations instead of learning from them causing us to hurt. So instead of trying to do it all at once, I work on things in pieces. Stop watching other people, you only get mad at where you are in life. Hold on to your belief cause that may be all you have to stand on even when no one believes in you. It may hurt, but going along with the popular demand would do you an injustice. Whether we are sick or not we still have things to work on.
As a MS'er we already have a lot on our plate, especially if your rebounding and trying to make it back up. Concentrate on your health because without that we can do nothing. Healthy mind, healthy body, and healthy spirit they all link together so get to it and work.
Truthfully, I still don't know what to do when it comes peeping around the corner. All I know is to cut the snake head off. Cut off anything linked to it. We often hang on to past situations instead of learning from them causing us to hurt. So instead of trying to do it all at once, I work on things in pieces. Stop watching other people, you only get mad at where you are in life. Hold on to your belief cause that may be all you have to stand on even when no one believes in you. It may hurt, but going along with the popular demand would do you an injustice. Whether we are sick or not we still have things to work on.
As a MS'er we already have a lot on our plate, especially if your rebounding and trying to make it back up. Concentrate on your health because without that we can do nothing. Healthy mind, healthy body, and healthy spirit they all link together so get to it and work.
Monday, September 22, 2014
http://www.emaxhealth.com/1275/multiple-sclerosis-drug-trials-reduces-relapse
Multiple Sclerosis Drug in Trials Reduces Relapse
2014-09-22 10:12
A potential new multiple sclerosis drug has been shown to significantly reduce relapse rate. In addition, results of the six-month Phase 2 trial also indicated two other important findings.
The new multiple sclerosis drug, which is named RPC1063, not only reduced the annualized relapse rate among the study participants; it also was associated with a major decline in the development of new brain damage and caused nearly no one to drop out of the study because of side effects.
The research team included scientists from various Scripps Research locations in the United States. A total of 258 individuals with relapsing-remitting multiple sclerosis participated in the trial. Here’s a brief summary of their findings:
What else may reduce relapses?
Another recent study found that a type of estrogen called estriol could reduce the relapse rate in women with multiple sclerosis. In the study, the patients were also taking Copaxone (glatiramer) and the benefit was observed after one year of treatment with both the drug and hormone.
These results were reported from a Phase 2 clinical trial, and therefore more research is needed before this combination of treatments may be used to lower relapse rates. Given that a female hormone was used in the study, no males were involved.
In addition to a reduction in the relapse rate, the women in the study who took the combination treatment also showed higher scores on cognitive functioning tests. This is not surprising since previous research has shown that estrogen can help protect the female brain from cognitive challenges such as memory loss and other mental dysfunctions.
Among the MS treatments already approved by the Food and Drug Administration (FDA) and that may reduce the relapse rate is Tecfidera (dimethyl fumarate). In the natural medicine category, a combination of vitamins A and E along with omega-3 and omega-6 fatty acids has been shown to be somewhat effective in lowering the rate of relapse.
Although there is yet no cure for multiple sclerosis, a variety of both conventional and alternative and complementary treatments are available that may reduce relapse rates, mitigate symptoms, and slow progression of the disease. Keeping up with all of the options can be challenging, yet the good news is that the search continues.
SOURCE:
Scripps Research Institute
The research team included scientists from various Scripps Research locations in the United States. A total of 258 individuals with relapsing-remitting multiple sclerosis participated in the trial. Here’s a brief summary of their findings:
- Compared with placebo, use of the new multiple sclerosis drug resulted in up to a 53 percent decline in the annualized relapse rate
- Use of RPC1063 resulted in a decline in the development of new brain damage (as noted using magnetic resonance imaging) by more than 90 percent
- More than 98 percent of the participants who took the drug did not stop because of adverse responses to the medication. This is a significant finding because many drugs for multiple sclerosis are associated with significant side effects.
What else may reduce relapses?
Another recent study found that a type of estrogen called estriol could reduce the relapse rate in women with multiple sclerosis. In the study, the patients were also taking Copaxone (glatiramer) and the benefit was observed after one year of treatment with both the drug and hormone.
These results were reported from a Phase 2 clinical trial, and therefore more research is needed before this combination of treatments may be used to lower relapse rates. Given that a female hormone was used in the study, no males were involved.
In addition to a reduction in the relapse rate, the women in the study who took the combination treatment also showed higher scores on cognitive functioning tests. This is not surprising since previous research has shown that estrogen can help protect the female brain from cognitive challenges such as memory loss and other mental dysfunctions.
Among the MS treatments already approved by the Food and Drug Administration (FDA) and that may reduce the relapse rate is Tecfidera (dimethyl fumarate). In the natural medicine category, a combination of vitamins A and E along with omega-3 and omega-6 fatty acids has been shown to be somewhat effective in lowering the rate of relapse.
Although there is yet no cure for multiple sclerosis, a variety of both conventional and alternative and complementary treatments are available that may reduce relapse rates, mitigate symptoms, and slow progression of the disease. Keeping up with all of the options can be challenging, yet the good news is that the search continues.
SOURCE:
Scripps Research Institute
Always be willing to adapt to change and aspire to do more. Getting some drastically life changing news can have you lost. The biggest key to the component is to be willing to try understand what is attacking you. You don't have to understand why all the time, but being able to identify the situation is where people miss their chance to overcome and move forward.
Okay, so you got a curve ball thrown and it hits you. Yeah, it hurts and may have left a bruise. It doesn't give you a right to give up the whole game. That bruise may serve as a reminder, you went through something and you overcame it. Dreams are often detoured,and delayed, but don't just throw them away. Adapt to where you are at in life now and make those changes, embrace them for it will be so much easier. It's so easy to say but it is a battle within yourself if your trying to become a better person. Throw out all the former plans and maybe some people that may be hindering you. Let go of the past mistakes, because they can be draining. Let go of the old you because no matter how much you want to return to that person, it is done and has served it's purpose in your life. Our shortcomings, life changing disaster's all serve a purpose wither you like it or not. If you are like I personally do disagree with all these changes, but God has designed me for a purpose.
If you believe in God like I do, he specializes in radical changes in your life. Once bed bound and wheelchair ridden I didn't know if I could make any changes. I just knew I didn't want to be stuck where I was at. I began to let it go, the anger, frustration, carrying the old pains, old scars that happened so long ago. After all that I began to see my body heal, the doctor's they continue to give me bad news, and I do everything they say. But for every bad report God's works something out for me. I began pushing and he began leading. I now am starting to walk with no cane, made all the necessary changes and advocating for myself. Who is going to care for you, if your not trying to do it for yourself. We can't do it on our own, but you have to have the drive and determination to move on
Okay, so you got a curve ball thrown and it hits you. Yeah, it hurts and may have left a bruise. It doesn't give you a right to give up the whole game. That bruise may serve as a reminder, you went through something and you overcame it. Dreams are often detoured,and delayed, but don't just throw them away. Adapt to where you are at in life now and make those changes, embrace them for it will be so much easier. It's so easy to say but it is a battle within yourself if your trying to become a better person. Throw out all the former plans and maybe some people that may be hindering you. Let go of the past mistakes, because they can be draining. Let go of the old you because no matter how much you want to return to that person, it is done and has served it's purpose in your life. Our shortcomings, life changing disaster's all serve a purpose wither you like it or not. If you are like I personally do disagree with all these changes, but God has designed me for a purpose.
If you believe in God like I do, he specializes in radical changes in your life. Once bed bound and wheelchair ridden I didn't know if I could make any changes. I just knew I didn't want to be stuck where I was at. I began to let it go, the anger, frustration, carrying the old pains, old scars that happened so long ago. After all that I began to see my body heal, the doctor's they continue to give me bad news, and I do everything they say. But for every bad report God's works something out for me. I began pushing and he began leading. I now am starting to walk with no cane, made all the necessary changes and advocating for myself. Who is going to care for you, if your not trying to do it for yourself. We can't do it on our own, but you have to have the drive and determination to move on
Friday, September 19, 2014
Tear's sown into your garden
There are going to be times when people don't understand the tears that run down your eye's. You won't be able to help it, your heart just hurts so much. Other's will not understand it, they'll tell your oh why don't you just get over it by now. I say cry anyway, cry in you closet, you private place, in church, with a friend. Cry till you feel like it is time to stop crying, don't get me wrong I'm not saying be stagnant. Don't stay still by no means because how are you going to get over it. Find the root that is within the weeping willow, embrace it, own up to, and do what you have to do on your own terms. Cry baby cry, cry baby cry! It's your soul that needs the healing, not the people around you. Don't pay attention to what is going on around because life to everyone else just goes on. Your road block in your life is just temporary and the tears that are sown are for your beautiful garden that is growing within you.~ KH
Thursday, September 18, 2014
Looking back at how it all began.....
I been praying and praying about the things happening in my life. Confession, this is a hard thing to go through for me, I'm not use to being pushed out my comfort zone. When you have a drastic shift in your life it affects everything to the core. You mental wellbeing, finances, relationship's. I think the biggest part for me was getting over the emotional ties with people, the lie's and rumors hurt my heart. It stressed me out so bad it brought out my first full fledged relapse as a adult. I remember having one going into my senior year of high school, but no one notice my true problem and I was misdiagnosed. I was having so much difficulty walking that I stayed in bed all the time and had gotten open sore's all over my body.
But the relapse that changed my life, lasted for over a year and I'm just beginning to get better. The stress of my job and deceiving relationship's with people close to me starting bringing out changes in me physically because I wouldn't deal with them emotionally. I began working out more, partying more, drinking even way to much for the average man. I was so unsober about what I was going through I didn't realize the changes in body until it was to late. I remember in May 2012 I was attacked and no one would help me. Being so stressed out about the situation my vision began to change and I was consistently hearing ringing or buzzing. Then my body started acting funny I would be awake on time for work, but couldn't move no part of my body. Try explain that to your supervisor when other doctors kept saying nothing was wrong. Between that and passing out, I put my job at risk and could no longer fight to keep it. Still having those symptoms, more began to happen.
Unable to come up with answer's for over a year now, I clinged to one of the most unhealthy relationships I ever had. Why I held on to that man I don't know why. But he was taking care of me, and abusing me at the same time. I won't get graphic because I'm still ashamed I ever met him. I got worse and worse, went from doctor to doctor still being misdiagnosed. My boyfriend at the time had to put me in the tub, pull me out, help me down the stairs to get in my car so I could go to work. Crazy! I was still trying to drive and work. I was falling so much coming into the building that one coworker would wait for me walk me in and out. When I think about it I can't help but cry. Misdiagnosed with edema twice, I finally passed out in a room full of people at work. Stayed in the ER for three days because they noticed I couldn't walk. Just by chance before they was going to discharged me, a new shift began and that on call physician asked to do a MRI. My brain was lit up like a Christmas tree. That's the beginning of my story.
But the relapse that changed my life, lasted for over a year and I'm just beginning to get better. The stress of my job and deceiving relationship's with people close to me starting bringing out changes in me physically because I wouldn't deal with them emotionally. I began working out more, partying more, drinking even way to much for the average man. I was so unsober about what I was going through I didn't realize the changes in body until it was to late. I remember in May 2012 I was attacked and no one would help me. Being so stressed out about the situation my vision began to change and I was consistently hearing ringing or buzzing. Then my body started acting funny I would be awake on time for work, but couldn't move no part of my body. Try explain that to your supervisor when other doctors kept saying nothing was wrong. Between that and passing out, I put my job at risk and could no longer fight to keep it. Still having those symptoms, more began to happen.
Unable to come up with answer's for over a year now, I clinged to one of the most unhealthy relationships I ever had. Why I held on to that man I don't know why. But he was taking care of me, and abusing me at the same time. I won't get graphic because I'm still ashamed I ever met him. I got worse and worse, went from doctor to doctor still being misdiagnosed. My boyfriend at the time had to put me in the tub, pull me out, help me down the stairs to get in my car so I could go to work. Crazy! I was still trying to drive and work. I was falling so much coming into the building that one coworker would wait for me walk me in and out. When I think about it I can't help but cry. Misdiagnosed with edema twice, I finally passed out in a room full of people at work. Stayed in the ER for three days because they noticed I couldn't walk. Just by chance before they was going to discharged me, a new shift began and that on call physician asked to do a MRI. My brain was lit up like a Christmas tree. That's the beginning of my story.
Wednesday, September 17, 2014
Tuesday, September 16, 2014
So it's been a while since I posted I kinda got discouraged because things haven't been moving as fast and smoothly as I wanted. But I guess that is a lesson in itself. For nearly two months there had been a hold up in receiving the rituximab infusions but last Thursday I received my first infusion just to see how it react in my system. So far everything is a green light but it truly takes about 96 days for it to show some results. There are still so many questions that I have, and I'm scared of the answer may be. I'm thirty- two never have had kid's before, what are my chance's now? How long will I have to take this medication? What are the long-term effects, because I can always over look the immediate as long as the benefit outweighs the side effects.
Thursday, July 17, 2014
Wednesday, July 16, 2014
The low down on my chemotherapy treatment!!!!
Rituximab:
Rituximab is a chimeric monoclonal antibody against CD20. Rituximab has been
used successfully to treat autoimmune conditions such as rheumatoid arthritis
(approved use) and SLE (off label). Preliminary it appears quite effective in treating
relapsing remitting multiple sclerosis and neuromyelitis optica as well. Clinical trials
using anti-CD20 molecules are ongoing.
There have also been recent theories that African american may have a b-cell
predominant disease pathophysiology and that a therapy such as Rituximab that
targets B cells may prove more effective in treating this population.
Routine protocol os 2 doses separated by two weeks. CD 20 and CD19 cells can be
checked to monitor efficacy of the drug.
Common side effects are infusion reaction including headache, flushing, low blood
pressure and fatigue. Allergic reactions including anaphylaxis has been reported.
Rittuximab can increase teh risk of infection including bladder infection, sinusitis,
upper respiratory tract infection as well as pneumonia and serious infections. It can
also decrease the effectiveness of immunizations. Immunization should be
administered prior to initiating this therapy. Although not in MS patient but there has
been case report of PML associated with Rituxam used in other disease (1 in 25,000
cases).
Baseline CBC, electrolyte, LFT, hepatitis B panel, beta-hCG and CD 19 should be
checked. Because of risk of hypotension during infusion one can consider holding
antihypertensive medication on the morning of infusion.
In summary:
Rituximab is an intravascular infusion which completely depletes one particular type of
white blood cell called B-cells, which has downstream effects on the rest of the immune
system. Though protocols are slightly different, in general, it is given two times twice a
year (4 infusions total), and is given in an outpatient infusion center. This is because of a
30% risk of an infusion reaction without pre-medication with some cocktail of
methylprednisolone, diphenhydramine and perhaps acetaminophen. The medication is
quite well-tolerated. There are generally no side effects to the medication. There is no
lymphoma risk with this medication. There is a baseline and 6 months blood test to
monitor the B-cell CD20 expression. Rituximab is Category C in pregnancy so may be
toxic in animals or no human data, there are no official FDA reports of birth defects in
cases of pregnancy with rituximab but babies are born with no CD20 cells. It does not
appear to increase risk of infection in babies as the cells re-populate within 6-18 months.
In monkey studies performed by the manufacturer, there was no toxicity on the fetus and
monkey babies were born with no CD20 cells, again with no infection risks. In the largest
case series published in February 2011, out of 153 women who became pregnant on
rituximab, there were 4 post-natal infections and two congenital abnormalities (1 club
foot, 1 heart defect) but these women were also on other immunosuppressant
medications during the pregnancy, including azathioprine and mycophenolate. They
concluded that rituximab does not increase the risk of congenital malformations above
the natural rate of 1-2%. Planned pregnancy is still recommended.
References:
1.http://myelitis.org/symptoms-conditions/neuromyelitis-optica/prognosis-management-nmo/
2. A retrospective study evaluated the efficacy of rituximab in 25 patients with
neuromyelitis optica (Devic’s disease). At a median follow-up of 19 months, the median
annualized posttreatment relapse rate was lower than the pretreatment rate (0 vs. 1.7,
p<0.001), and disability improved or stabilized in 20 of the 25 patients.
Jacob A, Weinshenker BG, Ivo V, McLinskey N, Krupp L, Fox R, Wingerchuk D, Boggild
M, Constantinescu C, Miller A, De Angelis T, Matiello M, Genain C, and Cree B.
Treatment of neuromyelitis optic with rituximab: retrospective analysis of 25 patients.
Archives of Neurology, 2008; 65:1443-1448. PMID 18779415
Rituximab is a chimeric monoclonal antibody against CD20. Rituximab has been
used successfully to treat autoimmune conditions such as rheumatoid arthritis
(approved use) and SLE (off label). Preliminary it appears quite effective in treating
relapsing remitting multiple sclerosis and neuromyelitis optica as well. Clinical trials
using anti-CD20 molecules are ongoing.
There have also been recent theories that African american may have a b-cell
predominant disease pathophysiology and that a therapy such as Rituximab that
targets B cells may prove more effective in treating this population.
Routine protocol os 2 doses separated by two weeks. CD 20 and CD19 cells can be
checked to monitor efficacy of the drug.
Common side effects are infusion reaction including headache, flushing, low blood
pressure and fatigue. Allergic reactions including anaphylaxis has been reported.
Rittuximab can increase teh risk of infection including bladder infection, sinusitis,
upper respiratory tract infection as well as pneumonia and serious infections. It can
also decrease the effectiveness of immunizations. Immunization should be
administered prior to initiating this therapy. Although not in MS patient but there has
been case report of PML associated with Rituxam used in other disease (1 in 25,000
cases).
Baseline CBC, electrolyte, LFT, hepatitis B panel, beta-hCG and CD 19 should be
checked. Because of risk of hypotension during infusion one can consider holding
antihypertensive medication on the morning of infusion.
In summary:
Rituximab is an intravascular infusion which completely depletes one particular type of
white blood cell called B-cells, which has downstream effects on the rest of the immune
system. Though protocols are slightly different, in general, it is given two times twice a
year (4 infusions total), and is given in an outpatient infusion center. This is because of a
30% risk of an infusion reaction without pre-medication with some cocktail of
methylprednisolone, diphenhydramine and perhaps acetaminophen. The medication is
quite well-tolerated. There are generally no side effects to the medication. There is no
lymphoma risk with this medication. There is a baseline and 6 months blood test to
monitor the B-cell CD20 expression. Rituximab is Category C in pregnancy so may be
toxic in animals or no human data, there are no official FDA reports of birth defects in
cases of pregnancy with rituximab but babies are born with no CD20 cells. It does not
appear to increase risk of infection in babies as the cells re-populate within 6-18 months.
In monkey studies performed by the manufacturer, there was no toxicity on the fetus and
monkey babies were born with no CD20 cells, again with no infection risks. In the largest
case series published in February 2011, out of 153 women who became pregnant on
rituximab, there were 4 post-natal infections and two congenital abnormalities (1 club
foot, 1 heart defect) but these women were also on other immunosuppressant
medications during the pregnancy, including azathioprine and mycophenolate. They
concluded that rituximab does not increase the risk of congenital malformations above
the natural rate of 1-2%. Planned pregnancy is still recommended.
References:
1.http://myelitis.org/symptoms-conditions/neuromyelitis-optica/prognosis-management-nmo/
2. A retrospective study evaluated the efficacy of rituximab in 25 patients with
neuromyelitis optica (Devic’s disease). At a median follow-up of 19 months, the median
annualized posttreatment relapse rate was lower than the pretreatment rate (0 vs. 1.7,
p<0.001), and disability improved or stabilized in 20 of the 25 patients.
Jacob A, Weinshenker BG, Ivo V, McLinskey N, Krupp L, Fox R, Wingerchuk D, Boggild
M, Constantinescu C, Miller A, De Angelis T, Matiello M, Genain C, and Cree B.
Treatment of neuromyelitis optic with rituximab: retrospective analysis of 25 patients.
Archives of Neurology, 2008; 65:1443-1448. PMID 18779415
Tuesday, July 15, 2014
July 16th
Ok yesterday I got a call from my doctor's nurse, I knew it was coming. I just was trying to put it off as long as possible. I'm going on my fifth spinal tap and I just forgotten the rest of what I was going to say. I hate when that happens. I'm tired of these symptoms and it is time for me to educate myself a little bite more about how to keep my disease at bay. Where do I begin? I'm just jumping in................. http://ghr.nlm.nih.gov/chromosome/MT how about the mitochondria
July 15th
Do you ever wonder how did you get to this point in your life. Truth is most of the times you never just get there, things don't just suddenly happen, you just wasn't aware of the warning signs. Wither you were oblivious to the facts, ignored, overlooked the signs. They were there, you just didn't understand what it all meant till it was all put together. The real task begins once you figure out where you at in life or this illness is where do you go from here. The chemotherapy treatment is only a couple weeks away, I keep going back and forth about is there another option that can turn this thing around. Is my faith in God not working, yes it's a blessing that I'm still functioning. I find myself asking Lord why??? every time I get on my knee's. It could be worse and I'm learning to come into acceptance that this is my journey and my testimony. However long I'm on this earth I'm meant to help heal someone else's soul and give them hope through showing them the strength that God has given me through this trail. To God be the glory! Without faith it is impossible to get through your most tragic times, you have choices to make, your function and working under distress. This is the only thing that can carry you is your faith. Be careful how you carry it, it is your jewel. If it's not feed properly it can poison others. So take care of your jewel.
Tuesday, July 8, 2014
Taking Safe
So today is day five since I been off my Avonex and I do realize some problems but I'm still blessed for being here. I'm a little forgetful and my thinking is clouded. I have prepared a "just in case bag" and sat it below the counter. There is so much on my I don't know what to say this evening. For as talkative as I am, I'm nervous and have another brain fart. Maybe I should start by talking about the situation at hand of how I got here.
I started out on steroid's and that was definitely something that couldn't be a permanent solution, but it work wonderfully to me. It stop most of my symptoms and I was walking just fine. Coming off it felt like coming off crack or something. It wouldn't matter if you were put on it one time it felt horrible coming off. It took months to actually see a specialist and be put on Tysabri but having the JC virus put me at risk for being PML, which would leave me permanently disable. That possibility mortifies me, honestly I rather be dead than not to able to wipe myself or to move my arms. But at times my hands shake and I can barely grip now. I hide from people as much as possible. A couple months ago I was put on Avonex and it seem to be doing well, except I kept having migraines. Four months later, three eye doctor and a MRI showed finally that I was getting worse once I gotten off the Tysabri treatments. The Avonex wasn't working.
I started out on steroid's and that was definitely something that couldn't be a permanent solution, but it work wonderfully to me. It stop most of my symptoms and I was walking just fine. Coming off it felt like coming off crack or something. It wouldn't matter if you were put on it one time it felt horrible coming off. It took months to actually see a specialist and be put on Tysabri but having the JC virus put me at risk for being PML, which would leave me permanently disable. That possibility mortifies me, honestly I rather be dead than not to able to wipe myself or to move my arms. But at times my hands shake and I can barely grip now. I hide from people as much as possible. A couple months ago I was put on Avonex and it seem to be doing well, except I kept having migraines. Four months later, three eye doctor and a MRI showed finally that I was getting worse once I gotten off the Tysabri treatments. The Avonex wasn't working.
Fallen and I can't get up
So today is like the second day I've fallen in a row and a whole week off of my MS medication. I know scary, it hasn't been that long yet my body is getting so week so fast. I'm not remembering what I need to do. I really need to create a routine because things are so out of wack for me. I'm losing things left and right and I'm barely keeping my head above water. Thank God that he let's us look forward towards tomorrow.
I have so much going on right Between my childish neighbors, my disease on a rampage and me not thinking clearly besides the fact that I'm angry! hey!
I have so much going on right Between my childish neighbors, my disease on a rampage and me not thinking clearly besides the fact that I'm angry! hey!
Saturday, July 5, 2014
I'm not a profound speaker but I just like to talk. Right now I'm dead tired but I find myself on this mission on trying to find to find just the right setup and site for this purpose, whatever purpose this is. If that make's sense.........
We'll it's more for me and hopes to help someone down line with what I went through. Life isn't for all of us easy. And sometimes some of us unfortunately don't get the royal flush ever when we play. It's bad when you sit down for a game a card's and can't just get one good hand. You feel like you like you let your partner down, your a bad player, and you want to keep playing till you get a get a good hand. But the game has to end sometimes, mine may be sooner than other's. Not to speak it on myself, just the reality of my situation. Just Like the song say's today , " he woke me up this morning" so I'm greatfull. Till gravity hits anyway.
We'll it's more for me and hopes to help someone down line with what I went through. Life isn't for all of us easy. And sometimes some of us unfortunately don't get the royal flush ever when we play. It's bad when you sit down for a game a card's and can't just get one good hand. You feel like you like you let your partner down, your a bad player, and you want to keep playing till you get a get a good hand. But the game has to end sometimes, mine may be sooner than other's. Not to speak it on myself, just the reality of my situation. Just Like the song say's today , " he woke me up this morning" so I'm greatfull. Till gravity hits anyway.
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