Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Wednesday, December 22, 2010

I WON!!!!

So a few days ago I was out walking the dog, and grabbed my mail from the box. A typical day, right?? NO! I received a letter from a return address of SSA ODAR. I almost dismissed it as junk mail. Upon further inspection I found several pages of legal jargon of which I understood few words. I thought I understood the following words though..."Fully Favorable". Now, this couldn't mean what I think it means, could it? I mean I ONLY applied 2 years ago and I haven't even had my court date yet. However, I do remember my lawyer saying something in October about asking the judge for a directed decision. Before I start assuming what this means, and jumping up and down, as obvious as the meaning seems, I decide to call my lawyer.
The lawyer's assistant confirms this does indeed mean I won, and without ever stepping inside the courtroom, yay me! Next, I conference called my husband and best friend to tell them. I could barely speak, I was crying so hard! Relief, affirmation, mostly relief.
In reading the judges ruling I kind of felt like the judge was saying "WTF are u wasting the courts time for?" and not to me. He cites my doctor's opinion, of course. And, he also cites the opinion of the medical examiner Social Security sent me to. Their own doctor "indicated that while there were some conflicting examination findings with regard to the claimant's neuropathy, the results of the nerve conduction study were compelling and highly reliable. Because Dr. Freeman reviewed all the available medical evidence of record and provided a detailed explanation with references to the evidence in the record to support his opinion, and he is a medical expert who is familiar with SSA policy and regulations, the undersigned grants significant weight to his opinion".
See, doesn't that reek of "your own freakin doctor said she is impaired, why'd you deny her in the first place???" LOL If that doesn't say it for you maybe this will... "The State agency medical consultant's (the people who read over your paperwork (or more likely DON'T read it) and deny you) physical assessments are given little weight because other medical opinions are more consistent with the record as a whole and evidence received at the hearing level shows that the claimant is more limited than determined by the State agency consultants." :) I love that. Other than the two words "fully favorable" those are my favorite words in the entire ten pages.
Don't you love getting your medical records and learning new things about yourself? For example, one of the specialists I saw said to me "what are they (as in my other regular doctors) doing for your B12 level being so low?". I said "it's low?". end of subject with that doctor. But, I did notice in all this legal mumbo jumbo of paperwork it mentions "the undersigned finds that the claimant's impairments medically equal listing 11.14 and 11.16." Of course I had no idea what this meant so I used my favorite search engine, Google, and, well, Googled it. These are listed in what they call "disability pararegs". 11.14 is for peripheral neuropathies. 11.16 is for Subacute combined cord degeneration (pernicious anemia). So nice for my doctor's to tell me about this, LMAO. I am not worried about it, it doesn't sound like anything big deal, although it is listed in the pararegs as a condition for which you can get disability, so that implies it might be something I want to mention next time I go to my doctor.Right now though, I am just to happy.
I'll have to expound on this more later as my fingers are really starting to not only ache but have bad sharp pains, and my knuckles are really swollen. I am so going to pay for this post, but to tell you I won, it is almost worth the pain.

Tuesday, July 6, 2010

Feeling stupid

I'm going to tell you this as if it happened today when in truth it happened last Thursday, although the embarrassment and stupidity I felt still lingers. Thursday morning I had an appointment with my new neurologist, a rather important appointment, thus. I live about 1.3 miles from the doctor's office and had decided to take the bus, a mode of transport I have not yet used in my 42 years of life. I could have driven my husband to work at 4 a.m. (1/2 an hour from here), or borrowed a car from my mother in law, or even asked my best friend to take me, but that all seemed silly, I mean it's only a mile for goodness sakes, and I'm a fairly independent woman, or at least I used to be.
To say I have sleep problems would be saying that the fact I have not slept yet and it is 8 a.m. is normal. This normal occurrence, for me, is especially true the night before a doctor's appointment, as I am always afraid I won't wake up in time. This particular Wednesday night / Thursday morning was no exception. About 5 a.m. I realized I may be having more problems than the normal, and should have taken a xanax earlier. By 7 a.m. I was in full on panic attack mode at the thought of taking the bus. I'm only traveling on the bus roughly 5 minutes, but how do I let the bus driver know when I want to get off? The bus is not like the subway, it doesn't stop at EVERY location. My husband tells me there is a cord to pull. Ok, I can pull a cord, but when do I pull it? He tells me after the previous stop to when I want to get off. How do I know when I'm at the stop prior to the one I want?
Truthfully, I can't believe I'm writing this down, sharing it, putting it out there for the entire world to read. I was in one of the worst panic attacks of my entire life over a bus ride. I couldn't breathe, I started vomiting. I had to call the doctor and reschedule. Like I said I still feel extremely embarrassed, stupid, and even ashamed.
To make matters more absurd, and this may surprise you, I used to be a pilot. A single engine, and multi engine pilot. Not only could I fly, I was licensed to teach OTHERS to fly.
I have an appointment with my regular doctor this Thursday. Trust me when I say I already have my best friend lined up to take me and I also have my husband lined up for a "bus lesson". Yes, a bus lesson. He will take me on the bus, we will ride it to where I need to get off for the doctor's offices, then get back on where I will catch it home. I'm terrified. The funny thing is I was sooooo excited about the bus and the new found freedom I could have (I found the route to the mall and I don't even have to change buses :) ), oh well, maybe someday! (or maybe someday I can convince my husband I do have good enough balance for a pink scooter!!)

Tuesday, June 29, 2010

How to Cope with Sudden Illness or Disability by Martina Roe: Parts 6 & 7

6. Try to eliminate stress from your life
As we all know stress contributes greatly to many illnesses. Stress in small dosage is useful but on a large scale can be very negative.
When our body senses danger it prepares to flee in which case our heart rate increases. If we experience such states too often our health suffers as a result. The slower our heart rate the longer our life. Breathing exercises can help us calm down influencing our heart in a positive way. Take deep slow breaths to the count of 5.
Are you breathing properly? Let’s make a test. Stand or sit straight in front of a mirror. Take one deep breath and watch yourself.
Did your shoulders move up? Then you are not breathing properly as you are breathing through your chest and not through your abdomen. Now put your hand on your abdomen and take some more breaths. Can you feel your hand move up and down? Then you are breathing correctly. Try and practise this deep breathing exercise each day for a few minutes. You will then start to adopt such breathing automatically throughout the day.
If you find it difficult to sleep then deep breathing can also help you to relax and go to sleep. Sleep is naturally very important. Try to go to bed and get up at the same time each day ensuring that you have at least eight hours’ sleep.The need for the length of sleep will naturally vary from individual to individual. Try to free yourself from all worries or any anger, relax the hour before going to bed with a gentle music or a book, anything which will help you go to sleep better. Do not watch television just before going to bed and if at all possible, have your bedroom television free. Just think how parents put their small children to bed. They pamper them with a bath and once they are nice and cosy in bed they read them a bedtime story or sing a lullaby. We know it works for little children but we do not apply it to ourselves.
We should try and live in harmony with everybody else. This might not always be easy. I know myself that the relations in our neighbourhood are rather tense. When I consider my family there is always an argument of one sort or another going on. The neighbours in our road always fight for parking spaces, especially during the weekends. One day our neighbour could not find a parking space so she parked her car in front of her garage but at the same time blocked an entrance to our second neighbour’s garage. He did not like it and asked her to move the car. At the end they started to argue. The arguments ended up in violence with the police having to be involved.In such arguments it is difficult to judge who is to blame because both parties are equally guilty, but the lesson to learn is not to get involved in such arguments or learn how to deal with them constructively. If you are angry with somebody take a few deep breaths and explain calmly to the person why you are angry and what you would like the person to do instead. Do not swear at anybody or accuse them of being an idiot, the response you will be getting should be less hostile. Write down on a piece of paper something similar to the following quote.
“I can express my anger, irritability or rage politely and effectively. It does not matter who with or what the issue is.” Do not forget that if you can’t do so it is likely that you are constantly increasing your blood pressure which is not good for your heart.
Our neighbour has learnt a lesson not to park in front of the other neighbour’s garage. Sometimes it is better to avoid conflictive situations even if it means an effort. In the case of our neighbour it is the inconvenience of parking her car a bit further away from her house and having to walk slightly further. But then walking is healthy; she might even be doing something for her health. Actually she is doing rather a lot of walking at the moment because she was drink driving and had her licence taken away from her for a year.
When it comes to arguments and judging people I like to become non judgemental. Our neighbour no longer lives next to us but I have remained a good friend of hers. She has supported me incredibly well when I was at my lowest and all I am doing is praising her for that. She might have some faults but then we all do, and often it is impossible to put ourselves into other people’s shoes and understand why they behave the way they do. Before I had my own children I sometimes used to see children who were really naughty, full of tantrums in the streets, and could not comprehend how their parents could let them behave in such an awful manner. But when I had my own children I finally realised that even they have their difficult moments. In such situations I would say to myself that there must be others who are judging me in the same way as I used the judge the parents of the naughty children.
New information and communication technologies are making our lives easier and especially people who are not very mobile benefit greatly from these. But there are naturally some very negative features. As well as encouraging a less healthy and more sedentary lifestyles modern technologies take the human touch away from us. Children find it more difficult to interact with each other when they spend hours on the computer and many families now are deciding to have their home computer and television free as it makes their family lives more stress free. Children might resist such idea first but later they become more creative and can interact better with their parents, siblings and friends. It might be an idea to review your use of modern technologies and possibly restrict their use, if at all possible. It is always nicer to meet your friends in person than just send e-mails to them.
I have also found that prayers can help you have a positive attitude and keep you peaceful. They work very much like hypnosis; you believe there is some higher spiritual being that is helping you overcome your problems. As a child I grew up in Prague under the communist regime. At that time you were not allowed to practise your religion and only could do so in secret. My family went to Church on Sundays, but because discussing matters was also not on the agenda under the communist regime, I never quite understood the concept of God till I was in my teens. By then the communist regime was breaking down. Since then I believed sometimes very strongly but I also, like everyone else, had my doubts at other times. When I feel better, I believe in God strongly, but when I feel ill, I can doubt his existence. Yet I know this is somehow wrong. You yourself might be going through very similar mixed feelings. But I am always assured that God will be there for me even if I doubted him that he will forgive me and be there for me even though I might occasionally doubt his existence. I once assembled some prayers and put them on a website. One energy healer said to me that the prayer page was full of energy. His comment reassured me that with good intentions you would always be surrounded by positive energy.
I pray simple prayers every day, just keeping it simple, thanking God for all the great things he gave me, teaching me to get on well with everybody else, not to bear a grudge against anybody. I have learned that God is inside each one of us, but it depends on each individual how much we actually notice him. Praying is all about making you a happier, healthier, wealthier person. It can also help you go to sleep.
It is also well known that people who worship God regularly live healthier, longer and happier lives. It is often the social contact and support from church members that contribute to this happiness in great amount. But beware of sects, who in God’s name want to create evil, they recruit people and especially those vulnerable ones will say yes. If you know the Bible well and all God’s teachings the sect member will not bother you. I remember after the fall of the communist regime the Czech sects that were until then forced to practise in secrecy, were recruiting their new members. Once my father invited them in because he did not know who these people were. When the cult associates found out that my father knew the Bible well, they left very quickly without bothering him ever again.
Learn how to breath well and practise deep breathing exercises
Relax before bedtime ensuring you get enough rest, going to bed and getting up at regular times
Learn how to live in harmony by learning how to express anger in a constructive way
Prayers can help you to live a stress free live as well as giving you hope and believe in yourself.

7. You are the maker of your own luck


Right at this moment you might be thinking that it is not in your power to improve your life in any way. Let me tell you that even if you think you have very little left there is still so much strength in you which you are not aware of and that I would like to help you discover.
The main clue to success is to start small, giving you manageable goals each day that will build on each other. Break your tasks into smaller chunks if your challenge is slightly larger. Many people make the mistake that when they have a brilliant idea they think big and want to see success overnight. I would never manage to write these strategies in just one day, I get tired quickly and have to rest but at the end I shall complete it if I write a little every day.
My son thinks he will be able to swim easily to the other side of the river. When he is in the middle, however he has to return because he is out of breath. He will manage it one day but must pursue his goal and practise swimming each day a bit further.One day his stamina will improve to make it all the way. He also wants to write series for television. But he does not realise that before aiming so high he has to have small success first then work hard for the big success. He would be much better off if he considered entering competitions of creative writing for his age group first. But at this moment he can only see fame, he cannot understand he has to work really hard to get to the top.
It is therefore important to take one step at a time. If it is an effort for you just to get out of bed and make breakfast perhaps this could be challenge number one for the rest of the week to get up by a certain time. Gradually and slowly add a few extra challenges as you go along. A the end of each day or week make a review of what you managed to achieve that you could not do previously. You could perhaps keep a diary and set yourself some targets for the day and review them later. I find keeping a diary very useful with my son. As the majority of children of his age he finds it difficult to plan his homework leaving them often till the end when there is not enough time left. The diary helps him to monitor what he has done and what he still has to do but it gives him also this essential skill of planning and organising his day so he does not spend the whole day on the computer.Keep on reviewing your tasks and challenges and make sure that you do not set yourself too tough challenges which you then feel disappointed because you have not achieved them. Rather slightly adapt your challenges and make them easier, or if your tasks were too easy, set yourself more demanding goals. And do not be a perfectionist; it does not matter if the house is not absolutely 100% clean.I have got a friend who is always so worried about things going wrong when she invites her friends for dinner that at the end she is so stressed and exhausted. Friends are there to cheer you up, not to make you feel even more awful, they will most certainly not mind if everything is not absolutely 100% perfect. Do not therefore worry about things going wrong or that anything is not perfect.
If you want to work I believe you can find a job that suits you, will be enjoyable and will give you satisfaction. Ill or disabled people often feel depressed because they feel they cannot contribute to society as much as others. Companies are often discouraged from employing people with disabilities because they fear that such people will be absent regularly and not be as efficient as others suffering loss as a result even though by law employers must not discriminate against employees with disability. There is help at hand for you as there are organisations that will help you find a job that is suitable for you with training for the appropriate job. You might also enjoy other benefits such as reduced alternative therapy treatments, or start up money packages if you think of running your own business. Explore all that is available of which you can take advantage.
As mentioned previously it is important to think small.You might feel others have got an easy life and can prosper well without having to fight an illness or disability every day. First let me assure you that even the people who appear to have no problems can be flooded with them. I know you feel like you are a victim, but it is important to think of yourself as a winner or becoming one. Do not compare yourself to others. We are all unique individuals with different experiences, values or beliefs. If your neighbour was disadvantaged like you would he or she have achieved as much as you?
You might still feel uneasy about the whole situation saying you are too ill to do any work. That is exactly how I felt not so long ago. The nature of my illness is such that I would not be able to turn up for any regular work. I have so much skill and ability yet I cannot use it even though I very much want to do something. I started to think whether I could work for myself on a self-employed basis. This would mean I could work when I feel a bit better and when I feel unwell I can just take it easy and relax. I speak and write 6 languages fluently so I could possibly do translations. Everyone around me is discouraging me because they believe it is a job that is not very financially rewarding. Yet I am not discouraged and am determined to work hard for it; most translation agencies only accept people with 3 or 4 years experience. But that does not discourage me. I am in the meantime translating adventure stories my uncle published in Czech after his journey to South America into English and this should give me some experience in translation.If I were healthy, I would naturally aim higher. It is nevertheless a great challenge for me.
Do not look for any reasons which would be stopping you from pursuing your realistic coal. People manage to find all kinds of excuses for things they have not done and should have done. As I am writing these strategies my life is certainly not straightforward. Yet I believe that tomorrow will be a better day and I will be able to continue and help great people like you achieve your dreams and be happy. I know things were tough for me and it took me a long time to finally find the right path. If I had a chance to read something similar to the 7 strategies I would have appreciated it very much and I hope that what you are reading is beginning to change your life for the better.
It is important to go only at a pace you are comfortable with. While you are patient and waiting for your dreams to materialise you are obviously doing all the right things that will help you to achieve your goal one day in the future.
In the past I watched films, where people who were involved in accidents causing them serious injuries made an incredible comeback.I always used to admire their strength and wished nothing of that nature would happen to me as I felt I would not be able to cope with it.Yet without this incredible strength such people would have no life at all.People who are blind develop all their other senses much better than we do, otherwise they would have to live in total darkness and isolation. I just wanted to show you that this incredible strength is in all of you and you have the capacity to use it to improve your life and the life of those around you. And do not forget - it is those around you who also help you enormously to pull through your difficult moments. One lady who became ill said there was not point for her to live on because she could not do what she was hoping to achieve. She just started to work in a nursery and only recently completed her course. But her family assured her that there is live for her only if she remains positive and that they are there to help her pull through it. Even though she can no longer work and has to rely on her family to help her she is happy because her family are there supporting her, she keeps herself positive and focused and is very proud of her children who learned to help their mum as much as possible.
If you think there is no such strength within you to change live for the better I am going to prove you wrong. On one sheet of paper write down all the negative aspects of your life, on another sheet reflect on the positive ones. Weigh them all up. You probably wrote more negative stuff quickly while the positive stuff only came up very slowly. Never mind, this is all about appreciating the entire positive side of your life now. The negative parts are hard, but throw the negative sheet in the bin. As you do so, imagine all these problems are locked up in the bin now and when you take the rubbish down to be collected imagine they are going with all the other rubbish into the landfill site. Every time the negative parts re-appear in your life try to imagine them going into the bin and away with the rest of the rubbish.
Let us instead concentrate on the positive now. If you only managed to write down very little let me help you to think of some more. When you are not feeling too good, it is difficult to see all the positive side of your life. But do you have a supportive family, a circle of friends, can you read, write, have access to the Internet, can you walk or have enough strength to push yourself in a wheelchair? If you have some of these you will be able to pursue your interests – perhaps studying something you enjoy, you can join like-minded people on the Internet or you can write about your problems and share your experience with others. To write about what bothers you helps and you never know your articles might be great and appear on websites for which you will earn some money. Nowadays there are so many opportunities thanks to the Internet, especially for people who are ill and disabled and cannot go to work on a daily basis. I always felt people with disabilities were so much closer to God and artistically gifted – they have the time to notice little thingsthat busy people cannot. I am sure you have heard of artists who paint with their legs or their mouth and their paintings are truly marvellous. Would they have not had their disability they would probably get on with their everyday lives and they would never have discovered this special gift in them. There is a special gift in everybody and even you can discover it and make good use of it.
If you cannot continue in your current job or cannot achieve your career ambitions help those around you who will certainly appreciate your input or expertise. Or help those who are facing similar problems like you. If you have children help them to achieve their potential. They will appreciate it greatly and it will be a consolation to you that they will do well and may not only fulfil but also eclipse your hopes and dreams. Let them, however, decide for themselves what they would like to do.
If you stick with your realistic goal you will achieve it. Also do not always listen to your prospects that have been forecasted by doctors for the development of your illness. As mentioned earlier the same illness can behave differently in various individuals. If you were forecasted that it would probably be 3 years by which time you would be in a wheelchair do not fix it in your mind. Rather try to be positive and keep walking as much and as regularly as you can. The longer you keep it up, the longer you can do it. I have heard of people who were told by their doctors that their illness was not curable; however, they even adopted a different approach to treatment than suggested by their doctor and have cured their illness even though their doctor has given them only a few years of life.
You can achieve your goals
Think small; accept that you will have some bad days. Find ways how to overcome these and say tomorrow will be a better day
Break bigger tasks into smaller chunks
Stick up with your goal – do not give up
It is now exactly a year ago since I wrote 7 Strategies how to cope with illness and disability. Since then my live has improved even though the first 6 months of this last year were the toughest of my live. I am afraid during these 6 months I have completely forgotten about these 7 Strategies and somehow never believed I would ever get better. But I did, perhaps because unconsciously I had these Strategies in my mind.
In the last couple of months I even started to work as an Invigilator, something I never dreamed I could do a year ago.And I am also thinking of helping out at my sons’ school, I could use my skills and help perhaps some students prepare for their French or German exams. I am still thinking about becoming a translator one day but I have other very exciting plans as well. I see my life as very rich; I do so many different things I could not do if I had to work every day and doing the same thing over and over again must be boring. Well a couple of years ago I thought that being unable to go to work is the worst thing that can ever happen to anybody.
It is the belief which is very important. Just try to say the following in your head, “Life is very hard, life is very hard”. Then relax, take some deep breaths and note how you feel.
Now do the same exercise again and instead of saying that life is hard, try and say something positive, such as, “I can take steps to make my life better and happier.” Now relax again, take a few deep breaths and notice how you feel.
I am sure you felt better when you kept telling yourself that you can take steps to make your life better and happier.
I hope that you found reading the “7 Strategies how to cope with illness or disability” enjoyable and useful and that over time some of these strategies if not all will help you to improve the quality of your life and make you a happier person. If you are in doubt about anything please consult your doctor, especially if you want to embark on any new exercise, diet or treatment regime. I wish you all good luck.

Monday, June 28, 2010

How to Cope with Sudden Illness or Disability by Martina Roe: Part 4 & 5 of 6

4. Learn how you can best help yourself feel better
Try and find out as much as you can about your particular health problem. Alternative therapies are a great way of harmonising your energy and the practitioners at alternative therapy clinics will be more than happy to advise you on which therapy would be most suited for you. The clinic might also run courses that will help you to apply some methods on your own. Naturally you will not be able to do everything. It takes practitioners of acupuncture years of study and practise before mastering the skills in their field and you would certainly not be able to apply any of the techniques on your own. You can, nevertheless, learn about acupressure or reflexology points and apply them regularly yourself. You can find out about which point corresponds to which organ in your body and which points would be more beneficial to press for you, how frequently and in which sequences.
I try to practise acupressure or reflexology on myself regularly and am quite amazed how much sensitivity or pain I can feel in the points that represent the organs of my body which are not functioning too well. I get also slightly excited that I am a bit of an expert on the subject. I feel it works because of the sensitivity of the points and I can help others to apply the same techniques. If you do not feel like pressing reflexology points on your feet you can just walk without your shoes on grass, on sandy or pebbly beach. In the past when people did not wear shoes and with no hard surfaces their feet were constantly massaged in the same way that the principles of reflexology healing work. Stepping over small stones is very beneficial because you activate and massage all the reflexology points at the same time. And there is so much more you can do to help yourself.
Learn from books or courses how you can help yourself (many local health authorities organise courses for people how to deal with any long term health condition)
Give the techniques which are recommended to relieve your particular symptom a try
Find out what works for you
Stick to the remedies or self help techniques which work best for you and be persistent (naturally follow any breaks which are recommended – for example you are always advised to have a break from herbal treatments in regular intervals).

5. Concentrate on the present, do not dwell in the past or worry about the future.
Have your caught yourself ever saying, “If this did not happen I would not get myself in the state I am in. I should have done things differently and so on?” Such claims might or might not be true, it does not really matter. What matters is that you try to ignore such thoughts because they will not help you advance in your life. You might be experiencing pain because someone has wronged you in the past. My sister keeps constantly reminding our mother how badly she brought her up and that she never had time for her, basically drawing attention to the mistakes our mother made. Some of these accusations might be true, others are not really justified but that is not important. What matters is that my sister should let go of these feelings of hurt otherwise she will always feel grudge against her mother and it will not help her advance in the relationship. In any case it is something, which happened in the past and can no longer be changed, so there is not much point trying to change it. If my sister really wanted to improve her relationship with our mother she should concentrate on ways how the relationship between them could be improved.
As a child I was sexually abused by my uncle, luckily for me he died when I was 14 years old. As I wanted to move on in my life I forgave him when he passed away, otherwise I would just live my life full of anger with images of what happened haunting me all the time. Such feelings of anger can sometimes completely dominate your life making you even ill. For your own sake it is important to let go of these ill feelings, this will naturally not be easy and you might need to seek help of a psychiatrist or a counsellor. But it is important to free yourself of any such feelings. You cannot forget but you have to forgive so you can live a happier and more fulfilling life. If you ever experience disturbing thoughts from the past you can keep saying to yourself. “What happened in the past happened, I let it go, I let it go, I let it go, I shall now put it behind me and concentrate on the present. There are good things for me to build on so I can achieve my dream one day.”
The present is the most important part of your life. Take a moment to reflect on how you feel. Can you experience the ‘here and now? Can you sit down for 5 minutes to be in a calm state concentrating on deep breaths without any thoughts spreading to your mind? Unless you practised this kind of meditation before I am sure you found this exercise difficult. Meditation techniques are very beneficial because they help us discover more who we are. That is not an easy matter in today’s extremely stressful society.
Reflect now on the thoughts, which were springing into your mind. Did you worry about your problems for which you have no answer? This is completely normal. As a result of your illness or disability you might have less power to influence matters in your life. I myself often worry what will happen to my children, or what if my illness deteriorates quickly and so on. But such worries are useless; they will only make my life more difficult and I am learning not to worry about anything that might go wrong in the future. Worrying only helps us to let our worries come alive. Mothers often worry about their children being cold or catching a cold and would not let them play with cold water. Children often feel warmer than adults and it is therefore better just to take a jumper with you rather than forcing them to wear it. The funny think is that if children catch a cold in the majority of cases it is not because they were cold or got wet (even though this might increase their chances of catching a cold). Usually a virus spreads around and everybody has it at the same time.My husband always complains about rain, yet it is his hostile attitude towards rain that makes him more uncomfortable than the rain itself. At the end of the day a bit of rain that we can feel on our bodies is only beneficial for us in the same way as walking barefoot in the wet morning grass.
I know and have accepted that I shall never live into my nineties as my grandmother did but then what does it matter. I am hypothesizing about something, which would be happening a long time away from now. Instead I rather concentrate on this very moment making sure that I am enjoying life to the full, that I give the right support and guidance to my children and that I can see them grow into responsible citizens. Even though your life is or seems to you to be much harder than anybody else’s do not imagine it to be harder. In our actions we often follow what our mind tells us to do. Make sure you give it positive commands. Do not worry about the future, sure you want to plan for it and see where you are going. It is only positive to have a dream or a challenge for your future. Your dream can, however only be achieved if you set yourself little challenges which you achieve day by day.
Do not dwell in the past
Forgive those who have wronged you
Do not worry of what could go wrong in the future – just let anxiety and worry go and allow reality to happen instead
Do not believe things will end badly.


Saturday, June 26, 2010

How to Cope with Sudden Illness or Disability by Martina Roe: Part 1 of 6

Illness and disability might come in many forms. Some illnesses and disabilities have to be faced from birth; others are developed during people’s lifetime.
They can come on suddenly or gradually develop over many years without the person knowing about it. People are usually genetically predisposed but illnesses can also be the result of the polluted environment or the lifestyle we adopt. Coming to terms with any illness is not easy and might take a long time especially when your illness surprises you all of a sudden.
Imagine that you are happy, you life is going very well and you are very proud of all your achievements.
You have got a great family and circle of friends until one day something very unfortunate happens to you. You become ill or have an accident and you can no longer enjoy life as you used to. Suddenly everything seems to be falling apart. All kinds of scenarios may come up; you might no longer be in a position to support your family financially, you could lose your job, simply your dreams are falling apart.
This is the hardest time and naturally you will be down about it, yet with a few changes you might still be able to live your life to the full. The following easy steps should help you in the right direction.

1. Allow yourself time to come to terms with your illness
I understand fully how you feel. The whole world is upside down and you are in the middle of it believing life will never be the same again with you just being miserable fighting your illness or disability. You might lose your friends because you will no longer be able to socialize as you used to. But this is also the time to find out who your real friends are.
They will be there to support you and do anything that is in their strength. They will, however, not feel sorry for you forever and you will have to find out soon that if the only topic of conversation is your illness, with time even your kind hearted friends will lose interest. It is also important for you to judge, whether your friends are honest with you.
Even though it might not be obvious to you some of your friends could be taking advantage of you and drain you emotionally. My sister, before her marriage broke up, used to look for emotional support from her friends. Someone, who she really trusted and thought highly of, actually used to say to her things which were making her feel even more depressed and she did not realise it at that time. Once I went to see her friend too and she told me nasty things about my father that were not true, with a view to manipulate one of his decisions about my future education. I was on top of things so I just ignored it and did not think highly of my sister’s friend but she could not do it herself at that time. Later she realised how much her friend was harming her and stopped visiting her.
Thinking positively is no easy matter but it is important to be enthusiastic about life again. There are only two choices for you to make. You can stay depressed and complain about your problems till the rest of your life or you have the option of trying to make most of your life even with all your limitations. We all know that cancer patients who remain positive live longer than those who become very depressed. The same applies to any chronic illness or disability. My sister’s first husband lost his leg in an accident. He eventually drank himself to death. If he had taken a more positive approach and enjoyed the little things that remained to him, he could have still been here with us enjoying all the achievements of his daughter who is now in her twenties.
Allow yourself time to let all the negative emotions to go first, which might take time. It is good to know that there are people who you can talk to and counselling might be especially appropriate at this time. I found the help of a counsellor especially helpful at the stage of my life when I myself became ill and could no longer achieve my own goals. I was always very ambitious and performed very well at school. Everyone thought highly of me and believed I would do very well in my life. I remember people did not approve when I chose not to go to University. After I had my children, however, I studied part time with the Open University and finally got my degree. I wanted to become a teacher of modern foreign languages but unfortunately an illness stopped me from pursuing my ambitious plans. I found it very difficult to accept and even thought life was not worth living. I felt frustrated because I was not getting better; my illness was to stay forever. There is no remedy or pill. I kept asking myself why did this have to happen to me, why is life so cruel?
When I was about 10 years old my mother went with her friends to see a healer who made a diagnosis from the retina of your eyes. As a young child I was constantly ill and on antibiotics with pneumonias, ear infections, or tonsillitis. I eventually grew out of these illnesses but was always aware of them. The lady healer looked at my eyes and told my mother that I was healthy then but one day I would be ill. I never worried about these words but when I became ill I suddenly realised she was right. I could do nothing about it, I had to accept it and start a new life.
At that difficult time of my life it was really good to talk. I was aware, however, that conversations with my family and friends just became dominated by my illness and that this was no fun for them and arranged counselling. My counsellor could understand my problems better than anybody else. I could not comprehend why anything so unfortunate had to happen to me.
I never did anything wrong, to the contrary I always thought of others before I thought of myself. But my counsellor and others told me not to think like that. It is just the way life is and there is no point trying to find an answer why. The important point to realise though is that illness is not a punishment of something wrong you have done. My counsellor also told me to enjoy and appreciate the good things in my life that I still have and I always think of that because I have many great things to enjoy in my life that help me to forget the hard side of life.
The process of accepting your illness or disability can be a long one. It is absolutely normal to feel depressed as long as you are enjoying it. But you will soon start to realise that feeling sorry for yourself will get you nowhere. You still have a life that you can enjoy; you can review what your strengths are and what you can still do. Now is the time not to dwell in the past but concentrate on the things you can still do in the future. Consider all your strengths, the qualifications you have; seek the help of a career advisor who will be more than happy to help you find a suitable job you might still be able to do bearing in mind your limitations. I shall come back to your career opportunities in strategy number 7.
Take time to accept your new situation
Talk about your problems – seek help of a professional counsellor
Start to think of your strengths rather than concentrate on your weaknesses
Rethink your career opportunities.


Thursday, October 8, 2009

First Appeal Denied

I'm sure you can guess I am pretty disappointed right now. Here I sit speaking into a microphone which translates my spoken words into type written ones, yet, the great powers that be tell me there are no reasons why I could not continue in the sales position in which I was previously employed or a similar position. 


This is from the Social Security website:

What We Mean By Disability


The definition of disability under Social Security is different than other programs. Social Security pays only for total disability. No benefits are payable for partial disability or for short-term disability.

"Disability" under Social Security is based on your inability to work. We consider you disabled under Social Security rules if:

  • You cannot do work that you did before;

  • We decide that you cannot adjust to other work because of your medical condition(s); and

  • Your disability has lasted or is expected to last for at least one year or to result in death.

This is a strict definition of disability. Social Security program rules assume that working families have access to other resources to provide support during periods of short-term disabilities, including workers' compensation, insurance, savings and investments.


In this, what the Social Security office specifies as a strict definition of disability, they specifically say “you cannot do work that you did before." I'm baffled, for lack of a better term, baffled. I will appeal, which means next step going in front of a judge. It can take up to two years to get a court date. I'm frustrated, I know my husband is frustrated. I feel bad for my husband. He works 50 to 80 hours a week so that we can scrape by. Then, when he is off, he helps me around the house by vacuuming or mopping. At least he's frustrated with the system not with me.

Next week. I have my first visit with a new neurologist. I will keep you informed.

Tuesday, September 8, 2009

Disability Appeal - latest news

Really there is no news, but I haven't written anything about my disability case in a long time so I thought I would update you all with this letter I received a few weeks ago.
I do know that SSDI sent a letter requesting three references. Al three references received paperwork to fill out. I chose the two people who have known me the longest, my two best friends. I figured they would best be able to describe accurately how I've changed in the past two years. I also chose my friend, and neighbor who helps me the most. She checks on me daily and helps with anything I need. I don't know if they were the right 3, hmmm maybe I should have asked the lawyer that question, duh!

Sunday, August 30, 2009

Life In the REAL World

The other night my normally very supportive husband said to me (on the phone) "I don't understand how you can be on the computer ALL day at home, but not at a job". Now this made me angry, but I do understand he gets frustrated too being the sole supporter while I sit home all day and do nothing. BUT I am not exactly on the computer all day in the same manner. This blog right here is the most I type. Oh, I may send 2 tweets a day or update my facebook status, maybe once a day, but a tweet can only be 140 characters, or about one to two rows of writing in this blog. I usually have my mouse with me, but not the keyboard, I hit refresh a lot on twitter, I like reading what people are writing on twitter, especially the characters from True Blood are on Twitter, and it's hilarious. Also, I think my favorite person to follow is shitmydadsays, if you haven't read his stuff, you've got to check him out. It's a 28 year old guy who literally types in stuff his 73 year old dad says, and it is so dang funny, it cracks me up!
The computer is my social link to the world. I miss working. I had the best job in the world. I worked for Disney, I made hotel reservations for guests. YES this was the best job in the world. No, not a job you can get rich at, but rich in so many other ways. I could be in the worst mood, had a flat tire, fight with my hubby, whatever, but once I sat at my desk and picked up the phone it didn't matter. Just hearing the excitement in people's voices, whether it be their first trip to Disney or their 50th was motivating and often inspirational.
I left there because of my health. As you know I have fibromyalgia, diabetes, and peripheral neuropathy. The neuropathy was my undoing. At first the doctors gave me a wrong diagnosis of rheumatoid arthritis. Mistaken only because the neuropathy was so prevalent in my hands versus starting in my feet, but then again, I did type 8-10 hours a day. The neuropathy got to the point where I would drive the 45 minutes to work, sit down at my desk, take my first call and the pains would start. Sharp stabbing pains, electric shock type pains. hands and fingers swollen. This is when I stopped working. It took the doctors another 6 months before they correctly diagnosed peripheral neuropathy. The doctor upped my gabapentin to 1800 mg a day, and sent me for occupational therapy. The first night after occupational therapy I wanted to have my hands cut off. I cried all night. The next time I went I asked the therapist to slow it down and he was shocked because he thought he had started extremely slow Needless to say the moist heating pad and hand massage felt good, but if I had to pick another pin up and stick it in a peg I probably would have brained someone good with those damn pins! That was when I let Disney know I wasn't coming back. I spent the next 4 months trying to find a job I could do that did not involve standing or walking, due to the neuropathy in my feet and degenerative disc disease in my lower back, or didn't require much to do with my hands, especially not typing. This was when I applied for disability. I'm still looking, so if you know of a job that doesn't require me to stand, walk, or use my hands, (and I can't get arrested for) let me know, I miss life in the real world.

Saturday, August 15, 2009

The Importance of a Good Support System

If you live with fibromyalgia, neuropathy, CFS, MPS, or another "invisible pain illness" there is no doubt you may come across naysayers, negative Nancy's, friends and family who in the least don't understand what you are going through, in the worst... don't believe you. Let's face the truth, it's easier to empathize with illnesses you can see or even are more prevalent, like cancer, heart attack, or stroke. www.fibrohugs.com has an excellent "letter to normals" that I believe should be a must read for everyone, especially those who deal with fibromites in their family, friends, and even coworkers.
When I worked for a certain, now bought out, aircraft parts manufacturer, in sales, I sold 1 million dollars a year more than the next closest sales rep. But, all my boss could see was I had more sick days than anyone else. My last job was at the Disney Reservation center where I had an excellent, extremely understanding boss (he had gout so he sympathized!) who knew how hard it was for me to leave my job there, I loved it so.
So, if you don't have support at home, work, or in your circle, what should you do? An excellent question. I found an amazing support group online. Soulten's fibro support is my favorite. http://forum2.aimoo.com/soultensfibrosupport/errno-1/warmtips.html
This group of people are not only my online support group. They are my online family. Most of these people I met in the fibromyalgia chat room on www.prohealth.com. They do not all have fibro, some have depression, are bipolar, or have neuropathy like me. They are from all over the world, and I don't think I would have made it through the past year without having their support.
One of the hardest things I had to learn was to kick the negative Nancy's to the curb. I cleaned house of the people who refused to believe my illness is not "all in my head". As hard as cleaing my life of these people were, and in some cases they were really long term friendships, I had to. No one should have to prove they are ill. You wouldn't ask a cancer patient to see their chemo treatment for proof would you?
I want to thank my support system. I have the most amazing husband who works 50-60 hours a week, takes care of me and our home too. Sweetie, you are my rock and I love you. To my best friends who I am realizing worry way too much about me and are always there to lend help, even from an hour away! And, lastly to my friend, neighbor, and sister Nan. Somedays I don't know what I'd do without you. You will never know how much the simple act of unloading and reloading my dishwasher means to me... and for that and all the other things you do for me (including picking up my prescriptions in the pouring rain) I love you (and u are NOT a negative Nancy!).

Friday, August 14, 2009

EXCELLENT Fibromyalgia & Disability blog

this is from a Disability lawyer's blog, and is some excellent advice. Thank you!

Fibromyalgia and Social Security Disability

A number of our Social Security Disability clients suffer from fibromyalgia. Individuals suffering from this disorder frequently experience the following symptoms:
∙ dull muscular pain,∙ multiple tender points (e.g., between shoulder blades, upper chest, etc.), and∙ fatigue or disturbed sleep.
The course of prescribed treatment can include medications which may include analgesics for pain and stiffness, antidepressants to promote sleep, physical therapy, and counseling. While not all individuals who have been diagnosed with fibromyalgia will be found disabled under Social Security rules, one source of information for people with fibromyalgia that we recommend is Fibromyalgia Professional Resource Center. This is a non-profit wefull of information and resources to those suffering from fibromyalgia.
Recently we assisted numerous individuals with severe fibromyalgia in getting Social Security Disability and Supplemental Security Income. Their cases were among the more severe of those suffering with the disease, and each had other co-existing conditions such as lupus and depression. The frequency and severity of an individual's symptoms are unique in each case and will determine, to a large degree, whether an individual claim will be granted benefits.
Some diseases are included in Social Security’s Listing of impairments, but fibromyalgia is not included on the list. In some instances, a disease, while not Listed, is addressed in a Social Security Ruling. The Rulings offer guidance but do not set out specific criteria for an award of benefits. Other diseases are not in the Listings or recognized in a Social Security Ruling.
Regardless of the disease, you or your lawyer should have the following:
∙ a good working list of your symptoms,∙ a knowledge of the degree of certainty of your diagnosis,∙ a general understanding of the consistency between your symptoms and your diagnosis,∙ a good understanding of what evidence might best support your contention that your symptoms are disabling, and∙ which legal theory will most likely be accepted by the Social Security Administration given the particular facts of the entire case.
If you, or someone you know, is suffering from severe fibromyalgia with dull muscular pain and multiple tender points, consider visiting the Fibromyalgia Professional Resource Center for additional information on the disorder. If you are considering a Social Security Disability claim, we advise you to speak with an attorney. We handle cases throughout the state of Texas, but we are always happy to give you a referral if we are unable to assist you.
Posted by Bob Kraft on August 13, 2009 at 10:55 PM in

Thursday, August 13, 2009

been a while... time to rant and rave!!

Sorry it's been so long guys!! Hubby started his new job about a month ago and that is going fine, he likes it BUT what kind of job do you have to wait a year for health insurance?? And, they charge $85 a week for this limited insurance plan that I don't understand at all. From what I've been told it's called Key Benefits Administrators. The paperwork I have gotten shows they pay $90 towards whatever your doctor charges, only 6 visits a year, and no real prescription plan. I did manage to sign up for the plan at the grocery store pharmacy so I can get my metformin and synthroid for only $10 each.... 90 day supply. I have paperwork to fill out with a few different drug companies... one to get cymbalta for free and the other to get neurontin and xanax for free also. I have been out of all my meds except my synthroid, and xanaflex and I feel like I am slowly and painfully dying.
One of my best friend's husbands found out a few months ago he is type 2 diabetic. He has been very good about checking his blood sugar, taking his metformin, and his diet. Except the diet part now. My bff is so worried about him because he acts like now that his blood sugar being medicated and "under control" he can eat what ever he wants. THIS IS SO NOT TRUE!! I know because I did the same exact thing. Now I have this burning, painful neuropathy. Neuropathy is caused by the low and high spikes. So let's say my BFF#2's husband sneaks out for the new McDonald's angus burger and fries after she goes to bed, this is going to cause your blood sugar to spike high, then spike low. My friend works a job that requires only good manual dexterity. What's going to happen when the neuropathy in your legs becomes in your hands? And they are swollen and painful all the time and you can't do that anymore??? Please please learn something from my mistakes!! I would call and yell at him myself, but I'm afraid he'd just yell at his wife. She's worried, we've been best friends for a long time and she has seen me go from being incredibly active to housebound in a matter of 2 years, she doesn't want the same for him.

Saturday, June 27, 2009

What is fibromyalgia


Fibromyalgia by the Mayo Clinic Staff

Definition

You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.

Symptoms

Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day, but here is a basic list:

Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
Back of the head
Between shoulder blades
Top of shoulders
Front sides of neck
Upper chest
Outer elbows
Upper hips
Sides of hips
Inner knees
Fatigue and sleep disturbances

People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.
Co-existing conditions

Many people who have fibromyalgia also may have:
Chronic fatigue syndrome
Depression
Endometriosis
Headaches
Irritable bowel syndrome (IBS)
Lupus
Osteoarthritis
Post-traumatic stress disorder
Restless legs syndrome
Rheumatoid arthritis

Wednesday, June 24, 2009

mind racing

I have been awake all night again. Everytime I go to bed my mind starts racing with "I could be doing this" "I should be doing that". The first time I got back out of bed, after laying there 10 minutes, I cleaned the cat box, wrote my friend an email, and made marinade and put the steak for dinner tonight to marinate. This time I was laying there with my mind racing thinking "I should be working on the mural". (But I didn't, my back and shoulders are hurting way too bad). The mural, my "manic" project. It's been a month or two since I started it, and really it's not that involved, but when I can't sleep at 3 or 4 in the morning, I take a xanax or two, then paint for about 15 minutes, it helps calm me down. The funny thing is, Stephen is asleep right there and clueless that anything is going on while he is sleeping. Poor man never knows what he will wake up to find, lol!!! This is a picture from about a month ago. I have started the tree that comes up from the other side of the dresser and added more flowers to this to make some bunches of flowers in places. It's supposed to be kind of abstract cherry blossoms but cherry blossom trees, in bloom, have thousands of flowers all over them. I think that would be overdoing it for one wall!
I shouldn't be writing this. I spent too much time last night researching companies for my hubby to apply to. We've already sent so many. Yesterday he looked up the phone numbers of at least 50 companies we applied to so he can call them and make sure they received them. But, now my hands look like I've been punching walls again. oh well, such is life. For me stress = insomnia + pain. My lower back, hips, and even the middle of my back have been killing me. My legs too. I actually had Stephen massage my legs for me today, well yesterday now as it's 8:30 am. I hope this xanax kicks in soon so I can catch some zzzzzzzzzzzzzzzzzzzz.
be well, chele