Deadlines, Goals and Tickers......

Well it has been one year since I gave in to my disability and gave up the fight to be employed. In a way, it is comforting not to have to fight the fight, make the decision, doubt each day if I can do what I need to do to keep my job.......but it is also hard not to feel like a failure. Thus the struggle of fighting for Social Security Disability Income and that is a very long battle for sure.

My next deadline is 7 months, 3 weeks and 2 days away - that is the absolute earliest, I have been told, that I might have a hearing scheduled to help determine my case. The average is 19 months with a time frame of 8 to 36 months. I am amazed - I completely understand the system is backlogged and it is their responsibility to ensure that no one receives these benefits unless they are truly disabled. But.....for people like me that have the burden of proof - it is very difficult, demeaning and frustrating. I have worked for 32 plus years of my life, paid in my Social Security - double that of most in the last 14 years because I was an independent contractor. Now I need help and it seems so far away like an impossible dream. I do this for my family much more than for myself.

I am trying very hard to keep a positive outlook and "be the difference" but it is a daily struggle. I find myself thinking more about the battle I went through to keep my contract, my livelihood, to help support my family and it makes my angry. I have more dreams - or should I say nightmares of the conversations and disagreements with the board that I worked with under the association that employed me for 14 years and then decided to discard me like the trash we take out daily. I find that the feelings are still raw and I feel the urge to try to again make them understand - but in reality I know that I not possible.

Ok - enough of that! For those in my shoes, take one step at a time - try to find the things and people that you love, embrace what you still have and try - this is not easy - but try to put the past behind you and move on to a happier and better life! It is possible and most days I can do this with some effort - other days are a struggle, but all in all it is very worthwhile for my family and those that I love dearly!

Being Disabled Can Be a Blessing!!

Believe it or not, you can turn your disability into a positive thing. It just takes a little time - after you morn the life you won't be having and get over the anger, move on to embrace what you love about your new life. It's not always easy but you can do it!

I was thinking about this earlier today and it brought me back to a time years ago when I was 25, the mother of two little boys, 9 months and 3 and they were the center of my existence!! I had a mole on the right side of my chest that had been getting larger and larger for a few years and I kept putting off checking into it - sort of a bury your head in the sand and it will go away kind of thinking. Then in an instant it became an emergency - I was innocently reading a "Good Housekeeping" magazine and in it there was an article about Melanoma - Uh Oh - there were pictures and alarm bells went off and I was in a state of panic. My Dad had died of lung cancer when I was only 17 and since that time I was always on alert for the allusive symptom that would strike me with a similar diagnosis.

Long story short, a friend of mine convinced me to go to the doctor the very next day and my kind old physician told me he feared it was a malignant melanoma and should remove it right away. So, I let him make a deep wide angled cut into my chest that very day and send it off for diagnosis just knowing that I was going to die. All that I could think of was my sweet little boys and what would happen to them - I was obsessed and unfortunately it would take at least a week to get the results back. That was a week of suffering for me and my family - I drove them nuts to say the least - it wasn't about me but about my babies - they needed me. I called my beloved OB/GYN - he had been my doctor since the age of 16 and I talked to him about what this diagnosis could mean - bad idea for someone like me. He told me about these types of cancer metastasizing, commonly going to the brain - Oh my GOD - my boys just did not deserve this.

Well, after a little over a week of non-stop drama, I found out that the mole was benign! I still remember the tremendous sense of relief and I can honestly say that this event changed my life. Some good ways and some bad but changed it all the same! I was so thankful just to do ordnary things and spend time with my babies!! Each day was a gift.... Now I see my disability the same way - not nearly as traumatic but I look at everything differently now and you can too!

I am thankful for the dirty dishes in my sink because that is something that I can still do for my family. I make my 13 year old's bed for him most days because that is a small thing that I can do for him when there are so many things that I can't do. I LOVE doing laundry even though I mess it up sometimes, it makes my guys happy and they appreciate it. The highlight of my day is fetching the mail - because most days I can!! Making a meal, baking cookies, paying a bill - all things that I can do sometimes are all tremendous triumphs and so greatly appreciated by me.

Each day after my son and husband have fallen asleep, and the house is quiet (I am normally still awake because I don't sleep well and dread going to bed) I think back over the day and if I have been able to do at least a couple of things for them, I am so very thankful and I feel my day was a success. Rather than dwell on the many things I can no longer do, I chose to be thankful for what I have learned to appreciate.

Moving Onward.......

Last week I found out that my appeal with the Social Security Disability filing had been denied. This means that I will have to go to court and appear before a judge. I don't really mind doing that - it does make me nervous, but I welcome the opportunity for them to see me and let me answer their questions. ONLY problem is.......the wait to get a hearing is 8-36 months with a national average of 19 months! That is just unbelievable and I am sure it is worse right now due to all of the money problems we are all having. If I didn't have to, I sure would not be filing.

Having said all that, I do feel that I worked hard for over 32 years and kept working long after I was first diagnosed and should have quit years ago. Now that seems to be causing me a problem - both statements that I received from the SS states that I should go back to what I was doing. Believe me if I could - I would.

The little car above is so dear to me because it reminds me of what I used to love doing - going for a drive - run to the store on a whim, take my son here and there. Now I can't drive unless it is absolutely necessary and very rarely do and only close to my home. It is just not safe and I realize that but it is so hard.

Sometimes I even get an idea in my head that I will just run to the fabric store and browse - something I just love to do. Then when the reality sets in that I will have to dress, do something with my hair, put on make-up and then still have the energy to drive out and back, I just give up and don't go. On rare days when I am able to get out, the freedom is so wonderful and I think I can just do anything. Unfortunately within about a half an hour, I know that I have to return home or I won't be able to get myself there.

I would suggest to anyone in the same situation, to try to do all that you can to provide information to your disability advocate to get your case before a judge quickly. Also - find something that you can do and enjoy each and every day. Above all, I have learned that if I concentrate on others - even just doing small things for someone else, then I don't have time to feel sorry for myself. Each and every day I am thankful for my many blessing as we all should be. There is always something to be thankful for and show gratitude for! At least for today, I will count my blessings and think about what I can do rather than what I can't!

There are Good Days and Then There are Normal Days.....

Yesterday was a really good day as far as my health. I felt a little burst of energy and actually accomplished a couple things. I cut up a batch of strawberries (before they went bad this time) and made a cake - before the eggs and butter spoiled from my leaving them out too long. :) For me that is an amazing day on the scale from good to bad. However - today.....not so much!

That is one of the most frustrating things about my particular illness. There is no real rhyme nor reason most of the time. Today is a normal day for me - dragging to move, very tired and sleepy and just not able to do much more than what is absolutely required. Days like this I spend in my old lazy Boy rocker watching HGTV and dreaming about the day when I will be able to paint and do things that need to be done around my house. My head throbs for no reason and I struggle to understand what is being said to me and to remember what I was doing five minutes ago. Who is this old person that I have become and where did the real me go???

I live vicariously in my day dreams - I remember that a friend on a chat group once told me that the difference between someone who is really sick and one that just thinks they are is that the one who is will think they can do anything and try and not succeed. That is me - always planning, dreaming, just knowing and believing that tomorrow will be the good day that I sew something and finish it, make dinner and not destroy it, have an intelligent conversation without having to search and drag the words from my brain, drive out on my own and not get lost or turned around. I have to have faith that the day will come at some point I will be able to remember to turn the stove off and have the energy to enjoy Grandchildren that I may one day have. For those like me we all have to have faith and believe because if we don't then we give up and I can't do that. Just for today - a normal day for me - I have to hang on and continue to dream!

Spring Has Sprung!!!

SPRING IS HERE!!

It's funny to think of Spring and how you change your feelings about it over the years. When I was young, it was my favorite time of the year. I still remember so clearly the Spring that I was a senior in high school - it was 1974 - oh that takes me back. I remember walking outside on a beautiful March day and feeling that life was anew and everything was reborn. I had lost my Dad one week prior to Christmas the year before, after a two year battle with lung cancer and it had been a very long depressing winter. At that time all of the flowers he had carefully planted in our small yard began to bloom and let me know that life would continue on.

Years later when I was working at an insurance company, I would always dress in my cheerful, flowery best on the first day of Spring - no matter what the weather. In South Carolina, it could be snowing on March 20th or it could be a balmy 80 degrees - you just never know. I remember a co-worker commenting on my Spring tradition and I was so touched that she noticed my mood and wardrobe change. I am happy to say that no one can see my wardrobe welcome to Spring now because it is a far cry from what it once was. I have to admit that the beginning of Spring often brings on a little bout with depression as I remember what it used to mean to me and lament on how my life has changed. But.......I cannot allow myself this little whine session for long because I have others to think about and I must put on a happy face.

I truly am thankful for many things these days, especially my family and my home and my computer which allows my brain to not be turned into a soft mushy ball. I am thankful for my friends - some whom I have never met, but they boost me daily online and keep me trudging the path that is now my life. They allow me to feel useful even when it is not true and they give me dignity that I have lost in so many areas of my life!

So for at least today - the first herald of Spring - I will put one foot in front of another and continue on my path - it may not be what I planned, but it is ok and I am happy just the same.

Oh - I Miss Dancing!......

One of the things I miss most about being a WAHM is dancing! Oh so much. I was never a coordinated ballerina like this little cutie but I just loved to dance! Beach music, soft rock, all that wonderful old stuff. I used to do conferences when I was a WAHM instead of a DAHM and there was lots of dancing and it was just plain fun!! I would look forward to the music and dancing for months prior to a conference. Oh well - I am watching "Dancing with the Stars" and living vicariously watching them do things I never could.

What else do I miss? I miss reading a book all the way through and remembering what I read; I miss being able to shower, wash my hair and go somewhere all in the same day; I miss driving - although I still can, I rarely do and only short distances on good days; I miss running and running and running - the great feeling you have afterward; I miss being able to cut the grass and get all dirty and sweaty and having a good hot shower after and then looking out at a wonderful clean cut yard; I miss having a really good nights sleep; I miss being able to clean my whole house in one day and then enjoying the nice cleaness of it all. Believe it or not, I miss working - the satisfaction of finishing up a project, doing a conference, working on a newsletter and then mailing it out myself.

But - I have to say that we learn to replace the things we miss, and there are many, with the new things we find in life. The window that God opens is so wonderful - even after the door has been closed. I have tried to start taking note of something each day that is new for me in this new DAHM life and being thankful for it. There is always my little bird friend, having time to visit graphic sites like my friend Carmen's - Shweet Potato Designs - it never fails to cheer me up. Look around and you will find many things in your new disabled life to be thankful for - it just takes a little time to appreciate. Just for today - look for the windows in your life.

It's another rainy and dreary day here but snug and warm inside. I can't help but think of homeless people on days like this and how close I came to being one! :) I am still waiting on a decision on my social security disability - it has been almost a year since I had to stop working and almost 6 months since I filed. Anyone who has been through this process knows that it is a very long one!

My little froggiepie friend here is my hero. This little Debbie Mumm graphic sits on my desktop to remind me that I can hang on and now that my husband has a job (we were both unemployed up until about a month ago) we will be able to keep our house and we are gettin by just fine. But.......I still can't forget that many are not and our situation could change in a heartbeat - just as it did last year. For those of us who are disabled, it is a daily fear - what would we do if we had no income, no insurance, (we still don't have insurance yet and haven't for about 6 months) no money for medication. Well there are ways to survive for short periods of time and I am living proof.

I was on 7 medications plus a breathing machine (BI-Pap) prior to the loss of our insurance. First - if you find yourself in this situation, go online and research any assistance you can find from the company who manufactures your medication - there are lots of discounts and some free offers out there depending on your income. What meds can you buy over the counter to temporarily replace the prescriptions?? Give your doctor's office a call and let them know your situation - mine provided samples for my most important prescription for several months and then changed it over to a different generic to hold me over until I get insurance. There is help out there - don't give up!! Also - check with your local Medicaid office - you may qualify for assistance there. Just don't give up.

Just like my froggiepie friend - we can all hang in until things get better and they will. Just have faith and just for today - hang on and have faith.

Small Creatures Among Us....

Today is another dreary day here - rainy and overcast. I tend to have more problems when it is wet outside or damp. So as I dragged myself through the kitchen this morning, I heard the usual loud chirp of a little bird that frequents my feeder just outside our closed in porch which has become my husband's office. It used to be mine when I worked from home but that is another tale for another day.

Anyway back to my bird friend - he is almost annoyingly happy - every day! I know it is a "HE" because he is a beautiful red appropriately dressed male cardinal. I personally don't believe there is another more beautiful bird that comes to our backyard feeder. But.......he puts me to shame because when it is cold, rainy, even freezing and threatening of snow, he is chipper and very vocal about how wonderful life is. Fill that feeder up and you will be rewarded with every song in his little song book. He is just a very happy guy and I am in awe. I am certainly not unhappy and I consider myself a glass half full person, but.......I just don't muster the same shiny attitude. I suppose it is a God given gift. I think I used to be that "shiny" but I have lost some luster over the past few years. I am not complaining, just trying to figure it out.

For those of us who suffer from auto-immune puzzles and issues, we may be happy on the outside but looking at us - not so much! My husband is constantly confounded by this and just wants me to put on a happy face and I try, but it just takes too much energy. I do wear the proverbial mask every Sunday when my boys normally come home for dinner. I have 3 grown and on their own and one still at home - the tender age of 13. So - for our weekly dinners, I try to be chipper and energetic because I love them so and don't want our visits to be a complete downer - although they probably wish I would put on some makeup and fix my hair - maybe dress a little nice. All of that takes energy away from our visit though so that does not happen very often. They are boys and they are forgiving of this and never make me feel bad.

Back to my bird friend - I am so very grateful for his daily, hourly reminder that life is wonderful and to be embraced - even if it is vicariously through him and my wonderful pets - two dogs and two cats - I know that is insane but they make life so much more fun. One is a Jack Russell Terrier, the other a Beagle/JRT mix - what a hoot they are together. The beagle mix is my husband's mini-me - such an old sole and so serious most of the time. The JRT is almost 10 which makes her about as old as me in dog years but you would never know it. The cats are just as entertaining - one a tuxedo cat - fat and sassy but also very sweet and a little crazy. The other is a 18 year old calico - really! She is a trip - I have thought she was dying for about 10 years now but each day she wakes up and speaks to me and manages to find her food and poop in the right place - most of the time. She gives me the faith that at least for today, I will enjoy my beautiful, wonderful, complicated life and be ever so thankful for it!

A New Beginning.....

The weather here today is so gloomy and it brings me back to how I got here - almost a year ago now. I worked hard to keep working and I was successful for over 15 years. I was first diagnosed with ME/CFS and Fibromyalgia in 1991, laid off from my full time job as a life insurance service rep - a job that I had held for 17 years. Since then many other pesky auto-immune bug-aboos have been added to my diagnosis - not the least of which is progressive osteo-arthritis. I gave up the fight to be employed on April 1, 2008....thus changed - a metamorphisis from a WAHM to a DAHM!

For many years I thought I would just die if I had to give up my work - I loved it so and after all I was able to work from an office at home. So - I fought until there was nothing left to fight for and I lost friends and relationships with those I worked with because I stayed a little too long at the party, so to speak. I became unable to realistically evaluate my own performance and be a reliable valuable resource.

Having said all that, going through the process did help me gradually let go rather than being dragged away kicking and screaming. It gave me the dream and the courage to look at what life could be rather than what it had to be - in my perception of reality. Then.....six months after I gave up the fight for my contract (I was a contract administrator for a large non-profit) my husband lost his job. Well, talk about throwing everything up in the air and watching it all settle back down to make a new life for yourself - this was the fast paced version that we were thrown into and so far it has not been at all what I had feared.

I have never had a lot but I do believe that over the years I had begun to take for granted all of the blessing we were bestowed in life. Now each day is filled with thanksgiving for every little thing - the trials as well as the gifts----because in the end they are all gifts and have the ability to teach us if we are willing to learn. I am stubborn and I fight change and I want to do things my way so this has been a slow process and continues to be. But.....I am learning and enjoying the journey and changing day by day. Yes - even in my fifties, I believe I am changing and evolving on a daily basis and I hope and believe that I will continue until the day that I die!
At least for today, I can do this and I can be a positive orb in the ebb and flow of what we call our life.

I am a DAHM and That's OK!

This is my logo girl - I just love these graphics from Shweet Potato Designs - I am addicted to them! I especially love this one because it reminds me of myself. While I may not stay in my robe and slippers, most days I would love to! If I could only find a pattern to make those big floppy bunny slippers, I am just sure they would make me smile each and every day - just the way this graphic does.

This blog is not about whining or feeling sorry for myself - I promise! I hope to provide some humor and a new way of looking at things for those like me or those who may have a loved one who is disabled. My situation is different from many because most would say I don't look sick or seem sick but my family would tell you a different story. My daughter-in-law who has Rheumatoid arthritis, told me about a site called "But you don't look sick!" It was designed for all of us who have to answer untold questions about why we don't do this or that and what is really wrong with us when we seem just fine. I will post the web address for that group - although I don't visit it often, I feel better just know that there are others who know what it's like. Such is the idea for this blog. We all need a place to go where we feel normal, not out of place and not questioned about our very existence. I hope to provide resources and information here that will guide us all through the maze that has become our lives. They don't have to be bad lives - just different! I embrace the things that I can do and try my best not to dwell on the things that I can't and most of all - just for today - I will do what I can and move forward.

So Now I am a DAHM!

Well......I used to be a WAHM ~ a Work at Home Mom! So now I am a DAHM and as my Mother-in-law would say - "That ain't never Good!" I am a Disabled at Home Mom and my 13 year old is none too happy about that but he perseveres. He is used to me being here all the time because I worked from a home office for about 16 years prior to becoming a DAHM. Trouble is that now that I don't have work to occupy my mind, I tend to be a bother to him and my sweet Hubby. This blog is all about being creative, creating, and making the most of being around the house - maybe a little too much. Follow along with our circus and the life we are trying to make out of our situation and hopefully we can show a greatful and enjoyable life - even if it is not the one that we planned. We feel very thankful and blessed just to be here and able to communicate and enjoy life - at least for today and that is all that any of us have - really.