It has been some time since I have been able to write one of my blogs. I have had dozens of ideas but each day has been a challenge to just continue to live. I promised to be honest in this blog and the things I share as I go along but that is not always easy. When I say that I get tired, very tired, it is something that most people will never fully understand. When I was young I would play until I was so tired I could not keep my eyes open. I was very tired but it was a good tired. I could rest and feel renewed to play another day. As I grew older I could work until I could go no more but it was a tired that found rest at the end of the day and a new day refreshed. When I became ill I got tired and it was not a good tired that rest could refresh. It was a desperate tired feeling that found no ease. When I became more ill, I often feel tired as if being alive is difficult and facing the challenges that life seems to never run short of, could be more than I had or have the strength left to face.
I have tried so long and so hard to not only be alive but to live life the best that I can.. I have tried to look for hope and believing that each new day is a blessing. I have tried with my art and words and books and involvement with others to share that feeling of hope. As the family circumstances became more dire my hope began to dim. I began to try to survive. When you can no longer find a way to strive in life, looking forward to each day as a blessing, and are reduced to surviving, you are not in a good place. Words of hope and joy no longer came to mind.
When I looked out my window I could see the sunshine but not feel it in my heart. I could see all of the people around me here at home and by phone and internet but still feel alone..... and tired. I lived in a world of pain that never ended. In the middle of the night if I finally fell asleep the pain would wake me. It was so intense the blood pressure was extremely high. They could not prescribe pain medicine without close medical supervision because it could diminish lung function. If my lung began to fill with fluid, I would be in trouble in an unbelievable short period of time. What could help me, could kill me. I understand all of that but could not afford the doctors that could help me. I have been seeing a lung specialist that is an amazing doctor and helped keep me alive through a clinic that helps those with no insurance or medicaid. They could not manage pain meds.
I finally got Medicaid and thought it was the beginning of being able to recover enough to have a life and be alive. By the time I finally got it, I had a heart attack, blockages of 80 percent on one side and 70 on the other. They went in and put in 4 stints at one time and I felt so much better.
The blood pressure was still an issue but I found out that since I had the Medicaid I could not go to the clinic as I had for years and many doctors are now unable to take new Medicaid patients. The primary care physician tried and could find no one closer than a 3 or 4 hour drive and that was a maybe for a lung specialist.
That was when my left side went limp during one of my rehab sessions for cardio function. I have been lucky and blessed to have regained most of the use on that side. It is still a bit slow and numb but better. The blood pressure was out of control. I am on 16 different prescriptions for blood pressure/ heart, breathing and respiratory, thyroid, blood thinners and that sort of thing.
The new doctor prescribed pain meds that have been such a relief. I am more able to be up and around. I am able to be awake and not feel like I am loosing my mind. My blood pressure began to come down to almost normal. It is amazing until..... it is time to get my medications refilled. I still need the blood pressure meds. I do not want another stroke or heart attack. I have lived through cancer and having most of my left lung removed. The last time in the hospital they explained that I have a degenerative bone disease that has progressed to the point that there is nothing they can do except try to manage the pain. I have known that for some time but it is not easy to live with especially when you add in all of the other things.
The Medicaid pays for 6 of 16 prescriptions. The blood thinners are all that will keep the stints from blocking up again. I had pressure increase in the heart not long ago they went in and did another heart cath and I am still here. I on prescriptions they feel are necessary to keep me going...... which ones do I need the most? If I get them filled, will I have the money for gas to go to the cardio rehab that has helped so much? If we do those things will we have the money for groceries? Then there is the big fear that seemed so oppressive especially during the extreme cold weather we had and will have again....will we have the money to fill the gas tank to heat our home? These are things that were ever present on my mind.
We did not live extravagantly heating the house toasty and warm. We heated only as necessary and only two rooms during the extreme cold. At night we are usually under the covers and we were under a lot of covers. It was cold. I saw no way we would survive month to month and eventually the gas will be gone on a little over $500 a month.
When Albert fell and fractured his skull it shattered more than the bone. It shattered our life. He tries day by day but some of the damage is permanent. He does his best but is surviving constant headaches and many other things that limit his life and ability to work. He applied for disability but was denied saying he might be able to be retrained. He has appealed and we will have to wait and keep trying to survive.
All of that brings me back to when I looked out the window seeing the sunshine but feeling no sunshine in my heart. I would like to say that things have all worked out and I see a bright and shining future but I can not see the future.
What I am now finally able to see, is this moment. I am looking at each day. I felt so close to giving up. I felt myself going down hill until I could hardly function at all. I see the smiling face of my little grandson and my daughter smiling but looking a bit helpless and worried. I see my husband as he takes me for each rehab session and patiently waits reminding me how important it is to continue. I see comments here online and from friends I talk to on the phone.... and I am not as alone as I was not that long ago. I took the time to pray for me along with those others I hear about who need help and realized that I am not alone.
I got a phone call and the doctor that helped me so much in the clinic found a way to accept me as his patient. He did not forget me and I have hope.
In the new book I wrote with my grandson, the ending is something a bit different. It is a children’s book but the end is one I think we could all relate to. Things in life are not always as they seem and some things we are never really sure of. Some things require faith. One of our neighbors stopped in to visit today and could not say enough about the little book. She and her husband both read it and she smiled as she told how touched they were. She said they loved the whole story but the ending was one they will never forget.
I went out on the back porch and sat with our little dog this afternoon.
Last night I went and sat out for a short time and looked up at the sky. The moon shone through a haze of light clouds. There was no bright shining light from the heavens of the night. There was a dim glow with clouds growing denser and a chill in the night air. Life can be that way. It can be cold with storm clouds brewing. It can seem dark and almost hopeless....almost. With the afternoon sun warming me where I sat and seeing the little dog romp and play, I looked up at the clouds parting and the intense blue of the sky through the trees. The trees are bare making patterns in the sky but Spring will come again. The leaves will bud out in vibrant green. The dogwoods will bloom. The flowers will brighten the world. The darkness of the night before was gone. The clouds were parting instead of building to blot out the sun. All hope is not gone. I have no idea how things will work out but life does go on. I still get very tired. I have had to write this a little at a time but I am writing it to share the idea that as I have said so often. We can not give up. When we give up is when all is lost.
I have a favor to ask. I need your help. I want each of you who read this, to take the time to tell someone near you how much you love them. We often feel it but do not really say it. A smile can often do wonders. Take a happy thought and pass it on. A simple kindness can mean so much. Reach out to others and try in what ever way that you can. So many here online have reached out to me and they will never know how much they have helped. They have tweeted and shared on twitter and facebook for me and I have not been able to return the favors. I often am too tired to be able to sit at the computer but for very shot times and when my back is acting up am not able to be here at all. When I do come back, there are words of kindness, hope, encouragement and prayers. I believe in those things. You have touched my heart and given me hope.