AwaytoRoam, now bringing you new insight into traveling with a disability, food, and interests!!!!
February 25, 2018
It has been a rough last couple of years for sure. Having been diagnosed with a severe polyneuropathy, scleritis, fibromyalgia, severe IBSD and an unknown autoimmune causing all of this, and then finding out that I need 4 levels of my cervical area fused with a cadaver bone and metal plate in my neck makes for concerning times. All these issues have allowed me to rethink this site and how I can now bring what I have learned and am learning to others. What started with a chair breaking and me landing on my neck, head and back has become a lifelong condition that I must live with. There are so many others out there who have similar conditions and symptoms such as the loss of feeling in hands and feet, the burning sensations in the feet, the constant feeling of pins and needles, the pain that is there one second only to hit in another area as though someone used a sledgehammer. Sometimes the pain is all on one side of the body and at times the pain can be all over the body. Pain can also be popping up in so many areas throughout the day that you cannot even explain this condition to a doctor (as for doctors, I will get there in a second). What is confusing and compounding my issues are the numbness in my face, scleritis, and the pain, all occurring on the left side, along with total numbness in my legs at times. Unusual to say the least, baffling to the core. At times the symptoms come in waves; test results may come back bad once and then revert to normal to then go back to worse. The aching of the joints, swelling of the ankles, feet and hands as well as the pain behind the eyes, migraines, etc. - the list goes on and these are all of the symptoms I have on a constant basis. Yes, it seems that fibromyalgia runs in my family as well as ankylosing spondylitis. My sister has been diagnosed with both diseases as was my mother but some doctors say it is not hereditary. I believe it is.
This site will be used as a voice and learning center for all who suffer from these problems. This site will also give you an in-depth look on how to actually have a life and be able to try and function as a normal human being even though the insurance companies want you either dead or in a wheel chair to be declared permanently disabled. That is right...having had a claim dropped based on someone's views of what you should actually look like and be able to do, never having experienced these problems themselves, can be devastating to both your health and your mental well being . Yes, you may have a good day or a better day, or just a few hours of functioning; however, God forbid you are observed and video taped during that time as that will be the entire decision maker for the rest of your life. I base these opinions and facts on real experienced situations, whether they are mine or they are gathered during interviews and conversations with others facing the same hardships.
I spoke earlier of the "doctors" who also decide whether you do or do not have a problem, and put their stamp on your future based upon their closed minded approaches to what they are hearing and observing. Having been to at least 4 neurologists, 3 rheumatologists, 4 primary doctors, 3 ophthalmologists, 4 orthopedic surgeons, and one so called "lymes specialist," their diagnosis' and treatments have been across the board. Do not give up as there are some doctors who find this to be "intriguing" and want to dig a little deeper than the previous doctor. Yes, you must stick to your guns and tell them exactly what is going on, and when they disagree, leave and find a new doctor if possible. As we all know, doctors only prescribe what they have heard about. Some will research further but do not get your hopes up on finding Dr. House as he is not out there. I have been through over 18 medications, most of which have had terrible side effects and / or did not help at all. Sometimes they made matters even worse. I had been put on the medical marijuana miracle drug which does help with the pain and aids with sleep (I am averaging only 2-4 hours of sleep per night for the last 2 years) but how much do you actually want me to smoke and consume?! I had told my doctor a few times that medical marijuana was not helping much. His response was to increase the amount I was ingesting which I did and yes, it did help but for me I could not live as a zombie every single day, being lit from 3am until 12am every single day. I would use the vaporizer from the time I awoke until I went to sleep (this did increase to 2-5 hours of sleep per night with the MM), make cookies, brownies, oil, butter, etc. but the feeling of being elsewhere was not what I wanted. The same goes for the multitude of pain medications that were prescribed as well. You walk around stupid but still with pain. Pain medications just make you numb to the pain but the pain is still there and when the medications wear off, the pain seems to have multiplied, so what is the point? We hear of "Big Pharma" and how the Pharma industry controls the population through medication. In one way this statement is true. In other ways those who suffer from pain would be so much worse off without the medications. It becomes a catch 22 situation that we cannot break out of and therefore must adapt to the various methods of self healing such as by making changes in nutrition and by getting a grip on our lives and having a meaningful life that we all used to have until we were hit with these serious health issues.
The contents of this site will give you hope, teaching you how to deal with your health in small progressions and teaching you how to deal with your issues in a more positive light. Ideas, concepts, theories, trials and facts will be presented here so that maybe as a combined force we may all be able to push for better understanding from the medical field as to what we are actually dealing with and say "hey, we have something you need to work on" and hopefully give hope to the hopeless. Believe me, there are times when you just want to say, "I am tired, I have had enough, there is no one else helping me."
Fear not as this site will now be a message and banner that will assist in regaining some pride in ourselves and how we can try to have a meaningful life through our daily routines. Traveling and living with a disability will be the main forefront of this site, showing you how you too can learn to live with the shackles we have been given.