Insurance...What a Beautiful Thing!!!

Well, after 7 long months, I am eligible for health insurance today!! I have never been so excited about seeing a doctor, with the exception of when I was pregnant. I am so relieved that my husband and son are again covered and I am so hoping that some new meds and tests that have been put off for far too long, can make a difference in our lives and in my plea for disability income.

I don't go out much, but right now but I am so looking forward to having blood work done and getting my check-up because this will hopefully mean that I can begin to improve - at least somewhat. I have been on a decline for about a year now and I know the lack of insurance has definitely added to the problem.

It is so odd that we take things for granted and don't appreciate them until we have to do without them. Having chronic health problems, you really take for granted that you will get the medications you need, that you will be able to go to the doctor when necessary - which is quite often. In the last 7 months I have not been able to do this and the two times that I did go in it was quite expensive for just a prescription refill or to have forms completed for my SSDI.

When your child runs a fever, a fear strikes you when you don't have insurance - even more so than normal. How will we get meds, how will we get him to a doctor??? I am just so thankful to have this period of time over and hopefully not to have to endure this again anytime soon. This experience has so helped me to realize the plight of so many and my desire to find solutions. This is something we all have to be cognizant of because we are all in this together and must work to help each other!!

Just because You Can........

Just because you can, doesn't mean that you SHOULD!

I need to plaster this saying all over my house and maybe even the palm of my hand and my forehead so that others can see it and tell me "Just don't do it!" If you have ME, Fibromyalgia, Arthritis or many of the other auto-immune diseases that are so prevalent, you can surely understand this little statement.

I have a drivers license, I can drive, and sometimes I do, but that does not mean that I should. I try not to unless it is necessary and never when I am very tired or early in the day. But, my son missed his school bus on this day - not his fault - and so I drove him to school. It was a necessary evil but as I was driving back home after dropping him off, I realized the many reasons that I SHOULD not be driving. It is only by the Grace of God and dumb luck that I have not had a major accident.

Most with ME or any other brain altering illness will know what I mean. While driving, I no longer am able to remember familiar routes that I used to drive every day, I become confused as to what button or dial makes the turn signal versus the lights and wipers work. My car is 11 years old so I can't blame it on not knowing. Left or right pose a problem and can be easily confused and the more anxious I become, the worse my driving becomes. My son would tell you that I wait way too long to pull out when making a turn, trying to be sure that no one is coming and I am doing the right thing. This often causes problems when those waiting behind me are no so patient. The Interstate is a very scary thing and I don't feel comfortable traveling there at all anymore. It is all too fast and not within my control.

The same can be said of foods like chocolate, beef, sugar - just because I can eat them - my hand goes to my mouth with a fair amount of ease - it DOES not mean that I should! I won't begin to die immediately if I do but there will be consequences and sometimes we don't even know what they will be. Over doing in any capacity has many consequences - especially for my family - but I do it anyway and suffer later.

My point here is, if we know there are things that we CAN do but just SHOULD NOT do ---- then Just don't do it!!! This little rule does make life a little small bit less unpredictable in a world that seems so out of control and can make each day just a little easier. When that box of brownie mix whispers to me again, just for today, I may tell it to be QUIET because I can't partake - just for today!

Spring Things To Do...

It was another blustery day here with lots of rain and clouds but a nice day just the same. Again my little bird friends outside my little window make me smile. They were busy as usual today doing whatever it is that birds do and the squirrels were running all about digging things up and burying others. The Blue Jays were in the trees making their warning noises to scare all the cats away. My front and back yard seem like critterville this time of year and I just love it. It is sort of odd though - we are in the city, close to a traffic filled road but still we have so much life going about their daily business in our yard - even small brown rabbits can be seen scurrying about at night trying to remain in the shadows with their white fuzzy tails lighting up the darkness.

All of this happy activity makes me feel a little sluggish and slow at times but most of the time I feel the joy that these creatures have in their simple daily routines. My routine now is so much more simple than it was even just a little over a year ago. My husband and I have a routine worked out - he works a good many hours as a retail manager of a large grocery store. So, I try to do what I can to make his days a little easier since I am not working any longer. I don't always succeed but I always try. My goals each day are to get out of bed (first big hurdle of the day!), get my 13 year old up and off to his bus; remember to brush my teeth, :), try and pick up around the house - things like dirty dishes, laundry, etc.; make the two beds in our house and help get things moving toward some sort of dinner for the 3 of us. I would have laughed if someone told me a year ago that that was all that I did all day!! If my day is really good, I try to throw a load of laundry in the washer and try to remember to put it in the dryer and I put some clothes aside for my hubby to wear to work the next day since he is normally out the door around 6:00 AM. And last but not least, I try to plug in his cell phone to recharge for the next day and have his coffee set up for the morning. It is hit and miss and some days I get them all and others none but I always try.

This all may sound mundane and trivial but for me they are small accomplishments that help my family and keep our little house running. They are the contribution that I can make to this family and feel needed and somewhat useful. We all need this - just like the birds and the bunnies - a since of importance for someone - a job to do. At least for now, I am just thankful to be and to do what I can with the hope that I can make things just a little easier for my family.

Struggling to Put the Pieces Together...

It is the Saturday before Easter and I have been trying to clean up a little in preparation. Unfortunately with my being so slow, I don't feel like I make much of a difference. My youngest son (13) is helping and that is so appreciated. I find myself very frustrated and irritable today and the cause of those feelings lie in researching my illness and trying to understand what is going on.

For some arbitrary reason, I decided to look up M.E. this morning - that is the newest name added to my litany of symptoms, etc. It is fairly common knowledge that Chronic Fatigue is for the most part referred to ME/CFS now. I decided to find out what the new name means and what it could mean to me.

Keep in mind that my quest for knowledge is mainly to try to get the pieces of this puzzle that has become my life, in an orderly group....to seek to understand and help my doctor to understand. Well, I almost fell out of my chair when I stumbled upon something called A Hummingbird's Guide to M.E. ~ Myalgic Encephalomyelitis. I could have written the symptom list myself from my daily life. Why can't the SSDI people use this information in deciding my case. If you have this or know anyone who does, then you will want to read this group of articles. It is very eye opening and will begin to bring sense to this illness that many of us have not had before. It also has links to more sources and information.

I have had my head in the sand for a good many years now, and I believe that all of us with disabilities must be our own advocates - we must use our last ounce of energy and intelligence to research and assist in our own treatment. Otherwise you are destined to be misunderstood and denied your proper rights as a disabled individual. Rights that I would fight hard for in the assistance of another person and now must fight for so that my family receives the assistance and understanding they deserve in handling my illness. Be good to yourself and learn all that you can about your own disability or that of a loved one.

Off to See the Wizard.....

Well I went in to see my doctor yesterday - my Wizard of sorts. :) Since I have been without insurance since my husband lost his job last September, I have been unable to go in on a regular basis as I had before. We will have health insurance back in only 17 days - he has been working for his new employer for almost 3 months!! I can't believe it.

I got a call on Monday from my doctor's office telling me that I would need to come in on Tuesday - he had received another packet of information from Allsup (my disability advocate group) and needed help completing them. So, I went over and spent two hours there - I am so very thankful to have a doctor that would take the time to be sure the forms were completed correctly. I am so hopeful that it will make a difference and speed things along on the track to a hearing or at the very least a review by a judge. I am told that if a judge agrees to review without the necessity of a hearing, a decision could be made quicker than the time it would take to have an actual hearing. That would be wonderful!!!

My doctor wizard tells me that according to the paperwork we completed I cannot hold down even a simple menial job - then what is the problem with the Social Security Disability Income robots - I just don't understand......I know they are trying to do what they think is correct but it is all too frustrating to those of us wait and hope that we won't lose all that we have while they take their time making decisions that determine our lives.

Enough grumbling - I am ever so thankful for my doctor and his staff and for the group at Allsup. I will pray and hope for the best. Each step along this journey has been a learning experience and I hope that I can help others who walk this way with me. At least for today, I will remain optimistic and hopeful and search for ways to make the travel easier for all of us.

Birdies Again Remind Me To Slow Down......

It is very blustery here today - wind coming in gusts blowing all of the trees around. It is a beautiful sunny day - just a little chilly. It would be a perfect day to fly a kite out of site! My 13 year old son is out of school on Spring break and we ventured out today to make a short trip to the bank and put gas in my car. Since I rarely drive, it was a special treat. We took along our two dogs on our little outing.

When we pulled into the gas station, as I was pulling up to a pump, I happened to look down and there was the tiniest little bird - possibly a sparrow. He was, with all his little might, trying to drag a cup cake wrapper off with him. The wind was trying to take it in the other direction but he would not give up on his quest to steal off with this goody at least twice the size of his little self. We stopped the car to watch him take little nibbles of the cake that was still stuck to the wrapper, gobble them up quickly, and then try his mightiest to fly off with the whole thing once again.

Finally we pulled around him to the pump directly in front of his and the entire time I pumped my gas, he worked on the tasty bits around the paper all the while bracing himself against a wind so powerful it was hard to open and close my car door. My dogs even noticed him and I could tell they thought "um - chicken for lunch" but they were interested in his hard work non the less.

After I finished with my gas and was pulling away another car pulled in and not noticing this brave little creature, they shooed him away with their vehicle, his cup cake wrapper left behind. I couldn't help but feel a little sad for him - all his hard work and he had to leave it behind. But - he had enjoyed a tasty little treat to stave off his hunger and he was on to his next adventure. What wonderful little creatures birds are - they are so happy just to BE! He put all of my whining and complaining to shame and made me again realize how so very blessed I am each and every day!!

What a Difference a Small Creature Can Make.....

I am reminded daily of the things that I am unable to do - I am fortunate though because it could be so much worse. People with Fibro and ME as well as arthritis can many times do a good bit for a short period of time. The problem comes the next day or maybe even later that same day.

This past week I walked out to retrieve my mail - a short walk of about 50 feet and on my way back I heard a little rustle behind me. Both of my dogs were inside watching me from the two windows on each side of the front door, so I knew it wasn't them. I turned to find the cutest little dog with scruffy hair and the sweetest little face starring up at me as if she knew me. Being a long time push over for anything on four legs, I reached down to pet her. I noticed that she had a little pink collar on so I was careful not to distract her so she would head back to her own home. She seemed so happy to see me that I couldn't help myself and I picked her up. Big mistake - she was just so sweet and lovable and by this time my own dogs were loosing their minds still watching from the windows.

I put her down on the side of our drive way just sure she would run back to her home, but each time she followed me back to my front door. I decided I would sneak in through my garage to keep my dogs from escaping with her. About that time my next door neighbor came over and told me that she had been abandoned and they could not keep her. Well I have a Jack Russell, a Beagle Jack Russell mix and two crazy cats so I knew that my hubby would not go for it.

Long story short, I agreed to take care of her until one of us could find her a home and then just as that was settled, she took off as if to say come on lets run! I forgot to mention she appeared to also be a Jack Russell and believe me those dogs are just crazy! I have barely been out of my house in months, much less running or even walking fast but off I went after this little creature. I am not sure why but I just had to save her. It is what I would want someone to do if one of my babies were loose. I chased that dog on foot for almost an hour and we went up hills, down slopes, through grass and all of my neighbors yards until I just could not chase any longer. My neighbor, whom she had become familiar with, was able to catch her and we tried our best to find her owners but no luck.

I sent out pictures of her to everyone I know trying to find her a home and my 22 year old son who lives in an apartment decided he would like to take her. So being a good Grammy, I baby sat for him this past weekend as he had a surfing trip planned. Well tonight, myself and 6 other members of my family were out chasing this cat crazy little monkey all over the neighborhood in the dark. Beside the fear of not being able to find her and how upset my son would be, it was unbelievable how we all came together because we all had fallen for this little sweetheart! She finally headed back for our house and my 13 year old tackled her - all 11 1/2 pounds of her crazy fuzzy little self. She was exhausted and ready for bed and headed home with my son and his long time wonderful girlfriend. Thank goodness a happy ending......until the next time she escapes.

My point in telling this story is that I would never have thought that taking this little being in could have turned my life so upside down over the last few days but it did. I am exhausted and I can barely walk and my arthritic joints are screaming, but ask me if it was worth it and I will say it definitely was. Sometimes, even though we know we shouldn't do things, and we know it is not the best thing for us to do....sometimes, just for today, we must because it is the right thing to do.....and in the end the benefit so out weighs the consequences. Hopefully I will still feel that way tomorrow.