28 days absence away from the internet seems like an entire lifetime. These have been a chaotic 3+ weeks.
The single wide situation went from bad to worse when we couldn't get the drums to turn, and I couldn't find anyone who was willing to work on the axles and try to get the single wide trailer on the road. Time started to drag and I became frustrated.
The entire scenario was compounded by endless rain. It rained, and rained and rained stopping any real progress. Eventually Don, from C&D mobile home movers, phoned to find out what was causing the delay. After explaining the problems he offered to take his crew and try to get the drums turning. For a fee.
The fee turned increased the cost of moving the single wide up from $1,500 to $2,350. *Ouch*
Still, despite pouring rains and hail the single wide made it's way from Alamogordo to Ruidoso by the 13th of August.
I was born with a hereditary disease, a disease my oldest daughter, and 2 grand-children have inherited. Some call it Bassel-Hagens disease, others call it MHE, or Multiple Osteochondroma Syndrome.
What is Multiple Hereditary Exostoses Syndrome?
Multiple Hereditary Exostoses (MHE) also often referred to as Hereditary Multiple Exostoses (HME) Multiple Osteochondromas (MO) is the preferred term used by the World Health Organization "WHO".
MHE / MO / HME is a genetic bone disorder in which benign cartilage-capped bone tumors grow outward from the metaphyses of long bones, growth plates or from the surface of flat bones throughout the body. The severity of this disease varies widely.
Some patients may have as few as two tumors, but most patients develop many more and the numbers of tumors can run into the hundreds.
These cartilage-capped bone tumors are called Exostoses / Osteochondroma and may be sessile or pedunculated and vary widely in size and shape. Pedunculated Exostoses / Osteochondroma is when a stalk is present, the structure is called pedunculated. These have a Broccoli like appearance with stalk and growth towards the end of the stalk. Sessile Exostoses / Osteochondroma have a broad-base attachment to the outer bone, called the "cortex". These have a lumpy / bumpy appearance (When no stalk is present, these are called sessile)
These Exostoses / Osteochondromas can cause numerous problems, including:
compression of peripheral nerves or blood vessels; irritation of tendons and muscles resulting in pain and loss of motion; skeletal deformity; short stature; limb length discrepancy; chronic pain and fatigue; mobility issues; early onset arthritis; and an increased risk of developing malignant tumor transformation (chondro-sarcoma) reported risk of 2%-5% over life time. It is not uncommon for MHE / MO / HME patients to undergo numerous surgical procedures throughout their lives to remove painful or deforming Exostoses / Osteochondromas and or to correct limb length discrepancies and improve range of motion.
Surgery, physical therapy and pain management are currently the only options available to MHE / MO / HME patients, but their success varies from patient to patient and many struggle with chronic pain, fatigue and mobility problems throughout their lives.
MHE / MO / HME is a genetic autosomal dominant hereditary disorder. This means that a patient with MHE / MO / MHE has a 50% chance of transmitting this disorder to his / her children. Approximately 10% -20% of individuals with MHE / MO / HME have the condition as a result of a spontaneous mutation are thus the first person in their family to be affected.
There are two known genes found to cause MHE / MO / HME they are EXT1 located on chromosome 8q23-q24 and EXT2 located on chromosome 11p11-p12. Approximately 60 to 70 % of mutations are located in the EXT1 gene and 20 to 30% are located in the EXT2 gene. In 10 to 20% of the patients, no mutation is found.
In my own case I have the disease in it's most severe form. Hundreds of bone tumors have surrounded the joins, my spinal column, hips, ankles, wrists. For many years my oldest daughter and I have been a member of the MHE Research Foundation:
The MHE Research Foundation is a nonprofit 501(c)(3) organization dedicated to the support of, Researchers, Physicians and Families, dealing with (MHE) Multiple Hereditary Exostoses Syndrome/(MO) Multiple Osteochondroma Syndrome a Rare Genetic Bone Disease.
The MHE Research Foundations five point mission is to REACH, advance & support the following.
*RESEARCH, to assist and support researchers in order to one day discover a treatment/cure for MHE/MO/HME.
Our foundation works hand in hand with researchers from around the world in this mission.
*EDUCATION, to provide vital clinical informational guides benefiting both families and physicians.
*ADVOCACY, bring awareness about this rare neglected bone disease throughout the world.
*CLINICAL, to help provide resources to families enabling them to locate the medical care they require.
*HOPE, the research being conducted on MHE/MO/HME & the informational resources will bring a better quality of life to the families affected by this syndrome around the world.
Two of the diseases that accompany MHE are arthritis and osteoporosis. I have both in advanced stages. Any stress, lifting heavy objects or inclement weather, damp/cold, will disable me - and seriously so. I fracture bones quickly and easily.
This past three weeks have reduced me to tears as the combination of cold,wet weather and trying to unload construction material proved too hard on my body and the pain became excruciating. There are times when you can't even put one foot in front of the other, when no matter how many pain killers you take your body is in such intense pain you simply cannot find a way to lessen it.
This has been the normal for the past few weeks. Trying to find a smile, or any joy... or one iota of hope has been difficult to show. I want to sleep. All I really want to do is sleep and I have found myself unable to stay awake past 5 pm, often unable to even make it to that time.
On the 15th of August I drove to Roswell and bought 1,200 sq foot of heavy duty metal roof for the single wide for $350. By the time I had unloaded it I was prayed I would never see another sheet of metal again.. but I know that I need more.
Finding two brand new 48x48 double pane windows at the Humane Society renovation store that would fit into the living room for $100 I purchased both and hauled them to the trailer on the 21st of August. I had to go and find help to unload them, and some porcelain sinks, 3 inside doors and one exterior door.
On the 26th I purchased $1,200 worth of wood, insulation, construction material from Foxworth and used bathroom cabinets from the renovation store and tried to haul the whole lot from Ruidoso to Magado Creek and ended up losing the whole load more than once.
Watching plywood, insulation and heavy lumber come flying off your truck makes one firmly believe that we should return to cave dwelling.
After unloading it at the trailer I could hardly get my truck back to Alto. The pain was simply unbearable.
John, who had been my sole source of help, fell in love and seems to have found a life that doesn't include helping finish the house. And I find myself in an earth shaking situation. A single wide with rain pouring in it and a lot of money invested in construction material.. and very little help, still praying that this relationship works for him. What a strange double edged sword.
And two things seem simply beyond me... how to get the electricity onto the land and how to get the plumbing done, get the well working. This is really an exercise in frustration and I'm struggling to fight depression. Thank God He gave me a sense of humor - I may start using tomorrow.
Total cost to get this far:
Single wide shell: $1,000
Transportation: $2,350
Plywood,2x4's to brace the trailer for transportation: $580
Solid block/wood to sit the trailer on: $300
Windows: $130
Roof: $350
Construction Material/insulation to "dry' it in: $700
Oak bathroom cabinets/sink, range, large pane window etc: $420
Meanwhile Huckins finally made yet another $450 payment today. Thus far he has re-paid slightly over $1, 300. The American judicial system is an absolute joke.... I am trying to find the energy to laugh.
