Monday, August 30, 2010

A New Start or More Disappointment?

Yesterday Jesse Guardiola, Guardiola Construction, went to see the single wide to give a renovation estimate and he was, at first, pretty disheartened at the present state of the single wide.
Still, he offered to get with John and donate a week free labor to get this situation turned around - and get me into a comfortable "home" before winter, so I was blessed despite his misgivings about the trailer I had bought.It was his professional opinion which may have turned things around, for he wanted to get a new roof on the mobile home without undue delay before starting re-building the walls, putting in new floors.
The fact that he estimated that we would need 70+ 2x6's - and we would be using the metal roof purchased for the barn, had my heart in my mouth.

Having a building fund stolen is starting to become an expensive and frustrating business. I don't recommend this to anyone.

Active duty military members from Fort Bliss, El Paso, attended a marriage seminar at the Ruidoso Convention Center this week-end and I was honored to be able to work with one member and his wife. Almost all of these US Army members had returned from the middle east and it was a week-end of many blessings. Your cup runneth over when a son has his father, and mother, and a family are re-united after lengthy periods apart. And our cup runneth over when those same people will risk all to serve their country.

It magnified my desire to start an equine therapy program for returning vets and their families, but even if I cannot achieve it I know beyond a shadow of doubt that as long as these young couples are willing to go beyond the call of duty we are blessed indeed.
Praying for our troops and their families.
If you listed all the reasons for your faith, and all the things that make you cry, it would be essentially the same list. ~Robert Brault

Saturday, August 28, 2010

Four Steps Forward, Three Steps Back

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.

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

“Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself... 'How did I get through all of that?”

-Thich Nhat Hanh

Sunday, August 1, 2010

A Small Light At The End Of the Tunnel

John Boyd and I spent the entire day yesterday getting the 14x70 trailer ready to be transported. We stopped by Lowes and I purchased some 2x4's and sheets of plywood. A total cost of $580, ontop of the $1,000 to purchase the trailer and $1,500 to transport the trailer.

And Huckins is reluctant to give me the entire $82,200, or ANY part of it back. *Sigh*

Getting all of the junk out was a chore unto itself. John built a fire and we started burning what couldn't be salvaged. Seeing as the trailer has been used for storage for years there was a LOT to haul out.
My dogs found a dead cat in the small bedroom and I left in disgust at their joy.
They were just tickled pink at this treasure they had found.

After pulling out all of the molded filthy carpet we could see the light of day. Actually the light of day was coming in from two floors, living room and hallway, that need replacing. *Grin* The entire floor. And three walls. Living room, hallway and master bedroom. And the trailer needs a new roof.

Still, despite the small size (900 sq feet) and the extensive damage it wasn't difficult to see the possibilities and know that if this wasn't going to be a permanent home it certainly had the strong possibility of becoming a comfortable, warm and somewhat pretty accommodation that could easily become a luxury tack/mud room or guest home down the road.

Like all women I tend to think ahead so while John was pre-occupied with the realistic things, like stabilizing the rotten walls, and disconnecting the utilities, my mind was racing onto "stuccoing" the outside, perhaps building straw bale walls around it to make it look like an adobe cabin. Having a derelict looking trailer on the land wasn't going to appease me, no matter how pretty I could renovate the inside.

John stopped working long enough to draw an illustration as to how the trailer can be used as a frame to build a "frame" cabin and then simply pull the trailer out and build from the inside.

The opportunities it afforded are diverse and do-able, and I feel blessed to have a chance to get on my feet on property purchased to be our residence. After 3 1/2 years of constant court cases I honestly and truly had given up all hope of ever being able to move onto that land.

Still the recession is hurting this region something awful. The Lazy J is selling up all but a handful of horses, Smiths Cutting horses sold out and moved to Portales, Hubbard is considering relocating Ruidoso Downs racetrack, and it seems that our economy, already seeing unparalleled numbers of foreclosures, and businesses on the verge of bankruptcy, is in for some serious times ahead.

For today I have to worry about getting electricity to the land, praying that the well works and I can find an affordable pressure tank, finding low priced sheet rock, metal roof, plywood, heating system and plumbing material. And dream about the exterior. But today I have HOPE. *Grin*

Hope is faith holding out its hand in the dark. ~George Iles
Hope is some extra
ordinary spiritual Grace that God gives us to control our fears, not oust them. ~ Vincent McNabb.