It’s been a rough several years the past few years of my life. I often wonder if it will ever be simple again? Don’t get me wrong, I know I've been blessed and I’m thankful for the memories good & bad. I’ve gotten to do many things I wouldn’t have being on the road, but being able to spend time at my home on wheels these past few weeks. It’s been a dream come true for me. I have longed for these days, I have missed being able to pack up and move when the urge hit me, I have missed seeing new scenery and meeting new friends, or catching up with some old ones. It seemed like life was much simpler and less demanding or stressful being in my home on wheels? Was it because with a home on wheels I could run away from it all? I didn’t have to pick up the phone and no one could just come find me if I didn’t want them too? I was the one who decided if I would park my home in an RV Park, mooch docking or boon docking or volunteer docking. I was free to do what I wanted when I wanted with no demands, no pressure? It seems like every time I turn around my life is in chaos, someone is always knocking on the door, someone always has a problem that seems to become my problem, I'm always running to a doctor here or there. The police is knocking on the door over the most stupid petty things? When and how did my life become so stressful and full of drama? Is it just that I'm older ( I did hit the big 50 this year!) Is it just me or is that I feel horrible all the time and I hold it in and keep it to myself how pain and how sick I am? Is it because I feel I always have to be the strong one who holds it together for everyone else?
I’m not sure if I told you but in Nov last year I had a stroke and couldn’t move either of my legs or my right arm? I have worked very hard to recover and I still have several surgeries I need to have for reconstruction of the chest wall from my double mastectomy. In December it will be 2 years ago and I still have the expander’s in as my health hasn’t been good enough to do the complicated surgery to rebuild my chest wall over the heart. Plus I’ve had to have multiple other surgeries and body parts partially or completely removed. I’m in a wheel chair and recovery is coming along very slowly. The doctors all say “oh your doing so well” but not well enough for my liking. I had lost 76 lbs and have since gained it back as I’m fighting digestive issues and yes that means I can not go poop. I had some polyps and tumors removed from the large intestines/colon/rectum area a few months ago. What little food I do eat stays in my stomach, ferments, causes massive swelling and severe pain. I look, feel and tell everyone it feels like I’m 9 months pregnant but the problem is, they removed everything that let’s me conceive or carry a child. I still have a baby I'm packing around!
My body is storing everything, which turns into fat! I’ve completely changed my diet and went on a all fresh veggie, fruit diet and still gained weight. It was miserable as my body can not digest fresh vegetables at all! I have to be careful even with frozen vegetables cooked. I have cut out all processed foods, including sugars, sweeteners and went to pure honey or maple syrup for coffee or drinks. I drink a few cups of coffee in morning (although with these chilly days, I find I'm drinking coffee later in the afternoon) Since cocoa is considered processed it’s a no no. No bread, no Pasta, No cereal, nothing that isn’t grown or made from fresh grown. No milk, no yogurt, no cottage cheese, no cheese ( at first they thought maybe I had a lactose or gluten intolerance .. neither was the problem) After months, it’s finally been decided that my problem seems to be from my MS which has progressed and is shutting down the organs. My brain isn’t stimulating the nerves which in return are not letting the muscles work. Gastric surgery may be my only option but I'm still holding out and trying different med’s and natural remedies before even thinking about that option. Removing part of the stomach and large intestines is not something I want to do! So now you are up to date on my health issues! On to other things ….
This is now my legs and how I get around at home. I don’t get out much as it just takes all my energy and strength. I really truly don’t get out other than from my home on wheels to the deck now because I can’t get myself around in a manual wheel chair and my electric wheels are broken!! I had one too many accidents with it. I’m waiting for the Dr office to fax a repair order for it to get fixed and they don’t seem to get into any hurry. I’m furious with them as I called on Monday and Friday I still had no answers? I was forced to spend from Nov – April in bed most of the time and couldn’t be left alone as I had no way to get out of bed or my house in case of a fire or something. It took that long for insurance to approve me for a electric wheel chair? The doctors wanted me to go to a rehab facility and I refused! Home health came to me in my dad’s home! It was much cheaper and much more comfortable for me to be in my home than some place I’d end up getting an infection or something from! No thank you, I don’t even like staying in a hospital anymore because of infections you can get! Do my surgery and send me home where I can make sure nothing is brought into me!
What is it with the medical profession now days? I sit for hours and wait on them but if I'm late for my appointment they charge me $35? My time is not valuable? I used to see an actual Doctor, now days you can’t find one that actually see’s you, instead primary Doctors run multiple health clinic’s and you see a NP? You go to a specialist he walks in says a few words and out the door and then comes a NP in who does the rest? Don’t get me wrong I like my NP’s I see, but it’s just not the same as the good old fashion Doctors. I always told Dr. Turpin I was gonna miss him when he retired and he’d always laugh and say “your right, in the future your going to miss a lot of things” and boy was he right!! I DO! He kept his office staff small at 2 office workers and one nurse. I saw the same people each time I visited his office, now I never know who I'm going to see when I arrive. A new secretary, a new nurse and even a NP? I find the older I get or since my stroke I need structure and am not much on change. If the slightest change in my plans has to happen, I’m messed up? What happened to my days of living life written in Jell-o?
I have thought about the elderly I took care of back in my days of doing home health and now I'm beginning to understand why they didn’t like change or a new person coming. They wanted the same people. I understand it now, you get comfortable with the same person, you trust the same person, you depend on the same person and when your routine stays the same it’s easier and trust me, I have found that in this day and age that means a lot!
So I haven’t decided is change good or bad? Is my life miserable because I choose to seek medical care and not for go it and just live my life as simple as I can? I can tell you this .. I yearn for the days of living life in my home on wheels and everything was written in Jell-o!
But the question of all questions is .. with all the health issues how does one accept change and learn to be happy with it when in your heart and soul you yearn to be free? How would you answer that question?
