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When Reality and Dreams Don't Mix, No One Wins

The light was flashing on my answering machine when I came home from going into work to meet my “one day a week onsite” obligation.  Lynn has difficulty answering the phone before it automatically rolls to voicemail so we don’t even try to have him do it when I’m away.  I checked the message and excitement spread throughout my body—someone was calling to see if we might be interested in selling the land we had.  She explained they had lived in the area for a while and needed to build a house to accommodate her husband’s wheelchair.  She shared in her message that she had seen that we had a foundation started on the land but that it appeared to have been sitting there a while and wanted to know if we might be interested in selling.
I was so excited!  I’ve been hoping to sell that land for years now even though it did not have a “for sale” sign posted. Was God sending me an answer to prayer?  Would it really be this easy that I could finally get that land paid off and maybe have enough left over to pay some bills as well?  Even if there wasn’t money left over, it would mean being able to pay off the $43,000 loan on that land!  We would lose a lot of money, no doubt, because we had a lot of money invested in the land.  We had paid to have approval for a pond to be built (which never was); Lynn had spent two years putting in a cinder block full basement and foundation for the planned timber-frame house; we had the timbers already cut for the tongue and grove frame sitting in a storage container on the land.  All of that would certainly be lost in any deal because it was needed for our house and probably would not be of interest to anyone else. However, I was willing to let that go because the reality is….I don’t want to move there anymore.
We bought that land in the early 2000s.  Our children were still in high school.  Lynn had not been diagnosed with MS.  He was a carpenter and after we got married, he wanted to build a house that was “ours” and not live in the one that I had built with my first husband.  He drafted plans for a timber-frame house that was beautiful. We found the perfect land that would support a full basement (where the children’s rooms would be)with a main floor two stories high with an open ceiling and a loft on each side of the second story with nothing but windows in the back.  A full wrap-around porch, a stone fireplace, an attached two car garage on six acres of land with access to a pond in the back. It was going to be gorgeous!  Plus, just in case Lynn did get MS one day, the doors would be wide and we were considering installing an elevator for access from the ground to the main floor.
Lynn started to work on it…slowly.  He was doing it all himself.  First, he waited on the Corp of Engineers to approve the pond installation.  Hurricane Katrina caused a two-three year delay waiting on the pond.  We finally stopped waiting on that and he started putting in the foundation. He laid the cinder block, alone for the most part, after work and on weekends.  Then, five or six years into the project, he was diagnosed with MS. At first it didn’t bother him but gradually, he couldn’t work without a helper (me or one of the boys) and then he couldn’t do more than an hour at a time before he was too exhausted to keep going.
Now it’s been four years since we have even set foot on the land.  The house we live in is in bad need of repair and maintenance which he can’t do and I don’t have time or know how to do it.  The economy is such that selling our current home and making enough to be able to afford to build the new home is unlikely with all the repairs needed here; plus where would we live till the new house could be built?  The timbers previously cut have dried over the years so it’s unlikely they would fit together well without being re-cut and adjusted.  It would take a lot of money to build that house now.  Plus, my daughter is now married and lives ten minutes away with her husband and most importantly, my grandchild.  She and her husband help us out so much and if we moved, they would not be able to do.  So, in my mind, I’ve let go of the dream and faced the reality that we need to sell that land and recoup whatever amount of our investment we can so we can do repairs on this house and pay off many of our mounting bills.   Therefore, this call was a blessing in my mind and I excitedly danced down the hall to tell my husband.
Whose face immediately crumpled at the news as he fought hard not to cry….
continue reading at: http://multiplesclerosis.net/living-with-ms/reality-dreams-dont-mix-one-wins/

The Need to Feel Productive

One of the struggles we have had to address with Lynn’s MS progressing so rapidly at one point was the loss of his feeling useful. Lynn was very strong, flexible, and talented all of his young adult life.  Then over the course of three years it seems he went from having the ability to build his own home (drafting the plans, laying the foundation for a full basement, toting, lifting, hammering, shifting, etc.) to not being able to have the strength to push a button on a keypad. He was the supervisor of a fabrication shop that designed and built displays that were the size of small houses.  He was a very talented carpenter but he could do just about anything related to construction and was even good at auto repair.
Unfortunately, just as his MS was progressing to the point that his work was being affected, his company closed the fabrication shop.  He was still in the state of mind that he was not going to acknowledge he had MS and needed help so he did not apply for disability; therefore, he lost access to that financial assistance.  He was convinced that if he didn’t own “it (MS)” then “it” had no control over him.  Though I tried to explain that he could and should fight to keep all of his functions intact and working well, he did not want to accept that disability insurance and other resources were there to help in that fight; not to prevent him from doing what he could on his own….but my husband is very stubborn.  Enough said on that.
While Lynn struggled to continue to “work,” being a carpenter doing physical labor is not safe when you lose your balance and fall often.  Also if hands and fingers don’t grip well, then use of power tools is dangerous.  He realized after a couple of close calls, he needed a new line of work.  His son suggested he start writing because he seemed to have a talent for it and enjoyed using his imagination.  He started with short stories but soon had an idea for a novel. He found that he loved to write and it became his new job.  He had his first novel published (Rising Tide) in 2009 just before his physical spiral downhill resulting in months of hospitalization.
After his third hospital discharge in six months, he was very weak; however, he continued to want to write. He NEEDED to write because he NEEDED to feel productive.  As a man, Lynn had to feel needed and productive to feel he mattered.  Actually, don’t all of us feel that way to some extent? No one wants to feel like a burden.  People have a need to contribute and when they can’t, depression sets in and health starts to deteriorate.  Therefore, I realized that part of my role as Lynn’s caregiver would be to help him work and be productive.  I needed to find a way that he could write daily that would still allow me to work.  It’s often a challenge and can be very frustrating for both of us.
continue reading on: http://multiplesclerosis.net/living-with-ms/the-need-to-feel-productive/

Update on Ongoing 4WD Wheelchair

If you follow my blog, you read a post on March 1 describing the challenges we were having related to a 4 wheel drive wheelchair we bought three years ago from Radical Mobility that has never worked.  We sent them the motor to the wheels, the controller and cabling, almost two years ago now and have still not received them back.  We had attempted over and over again to communicate with the company but unsuccessfully…until I wrote a blog about it.
I immediately got a response from the company (Radical Mobility) apologizing for the issues we had experienced and was given a promise that our repairs would be immediately addressed and the items returned, going into the mail on March 5.  Well, it’s now April 24 and they still have not shipped the items!
Initially I though we were going to get the relief we wanted.  I got excited that FINALLY we would get the parts back and Lynn would be able to use his wheelchair on our summer vacation.  I was contacted by the sales department to send them pictures of the connecting cables to make sure they were wired properly.  I immediately responded and was promised the motors would be fixed and ready to go by the next week.  Then silence; weeks of silence. 
I have repeatedly sent them emails; most of which go unanswered.  I occasionally get a response back promising that it’s going in the mail by xxxx.  I’ve been told the parts were stolen when their warehouse was broken into.  The parts would not have been there to be stolen if they had sent them when they promised.  The last promise was that they would be shipped the Tuesday after Easter and the tracking numbers would be sent to us promptly. 
Still no tracking numbers.  No answers to my inquiries either about the status.
I am so disappointed in this company.  When I visit their webpage, the wheelchairs look like they do exactly what Lynn needs so that he can fish again.  His life is so limited in entertainment and fun.  I had so hoped that Radical Mobility would come through for us but once again, I’ve been seriously disappointed.  I was even going to rescind the negative blog if they had followed through…but they haven’t. 
The owner of this company appears to be a quadriplegic.  If he is, he KNOWs how important these type of devices are to those who have so few options to participate in the activities they enjoyed before…  Why would he allow his company to disappoint those who face the same challenges he does?  We paid him $15,000 to get that chair and it has never worked.  Makes me wonder what he uses the money for. Is this a scam or a legitimate business?  I’m just not sure anymore.
So once again, I warn my readers, if you are looking for an all-terrain wheelchair, do NOT buy from Radical Mobility.  They cannot be trusted to support their merchandise and their customer service, both in communication and in follow-through, is non-existent. Don’t believe what they put on their website; if you do, you’ll be severely disappointed as we have been. 
We still have our hopes that if they FINALLY ship the parts, they might get through customs and to us before the end of summer so he can go fishing but it’s now starting to look very doubtful. Say a prayer for us that they will live up to what they promised soon.
Thanks

Trying to be All Things at All Times

I’m having one of those “half-empty” days.  Didn’t start out that way.  I was excited because Lynn was having his Tram delivered today and I knew he would be happy to have that.  The Tram is a device we bought to help him stand and perhaps even walk one day so it’s a “hopeful” device based on our faith that he will be able to do more in line with walking, in time.
However, he woke up not feeling well from his Rebif shot last night.  When he doesn’t feel well, my day becomes devoted to his constant need for attention.  I needed today to catch up on work I was behind in from my job.  I count of having some dedicated time on Saturday and Sunday to make up for the time I have to spend caring for him during the week. Well, it’s now 7:30 p.m. and I’ve given up the hope that I’ll get to do any work.  I realized I was depressed and feeling overwhelmed so I decided to talk to you all because I know you understand.  In other words, you’ve “been there, done that.”
I get so discouraged sometimes.  Lynn wants me to be all things at all times and I get so tired of trying to keep up with it all.  For example, he has an itch that needs to be scratched so he calls me to come scratch his leg.  I get there and he looks at me expectedly as if I should know what itches so I go through the twenty-questions routine to narrow it down.  “Which leg, top or bottom, nearer the foot or thigh, inner or outer side,” until finally I get an idea of where the itch is.  Then I scratch wondering if I’m coming close and when I can stop.  He expects me to instinctually just know what he needs.
A few minutes later, “Donna, come fix my patch.”  Lynn has a pressure ulcer on his buttock I’ve been treating and covering with a foam-type patch.  It’s large enough that it pulls on his skin hair at times or sometimes the problem is the air-bladders in his seat cushion that press against it and make it hurts.  Whatever the problem, he expects me to make it better. He looks at me imploringly to say, “make it stop hurting” and I fiddle around under his leg, lifting it up, smoothing out the wrinkles, padding down the sharp points that come from under-inflated air bladders to see if “it makes it all better.” Sometimes it works right away; other times I work and work to make it all better. When it’s the last scenario, I feel like crying in frustration before I’m released by him to go back to whatever job I was trying to do before he called me for help.
When I’m not magically trying to fix pain and discomfort, then I’m acting as psychologist.  This week he got depressed because he had a visitor who choose to tell him about two people she knew with MS who had serious complications or whom the disease had devastated.  One of them died and the other is bed-ridden and in a lot of pain all the time. After she left, Lynn, in exasperation asked, “why do people do that? Why would anyone tell someone with a chronic health condition about someone with the same condition that was doing much worse than they are?  Can’t they understand that I don’t want to hear about how “bad” I could get? It’s hard enough to keep a positive attitude and keep fighting this thing without someone trying to bring me down with stories of how others lost their battle.” After that visit he was irritable and easily annoyed for a while so he needed a lot of attention.
A new challenge lies ahead for me. Lynn now has his Tram which could lead the way to a lot of progress OR it could result in a lot of disappointment and frustration if his condition won’t allow him to stand with support.  However, who is going to be the one to help him with his goal of walking?  I am of course.  Insurance cut out his home visits for Physical Therapy.  They might approve outpatient visits but honestly, if I had to take him in for PT every day, I might as well give up my job now.  It takes a minimum of three hours to get him and I ready if we are going somewhere or having someone come to us; then there’s thirty minutes or up to an hour to drive to wherever we’re going.  Therefore, to save time, I’ll have to become his PT.  I already help him every morning to change weights, apply straps, adjust positioning, hold equipment, etc. while he works out. I’ll be adding to that assistance with standing. He will need to increase his endurance by standing longer at a time so I’ll have to be close by meaning–more time away from my paying job.
Everything he asks me to do he needs to have done for optimum health. Everything he asks me to do though takes time from all the house maintenance, car maintenance, shopping, cleaning, food preparation, personal hygiene, job duties, making appointments, etc.  He REALLY needs a full-time assistant but our bills are significant enough that I couldn’t carve out that much money to have someone full-time–and in-home care is not covered by insurance. I feel like I’m working twenty-four hours a day; seven days a week.  I haven’t had a day away from him that wasn’t related to my going into work since Eli was born and I stayed at the hospital all day/night with Sarah and Greg waiting for his arrival.  That was May 27.  Before that I had a shopping day in October looking for a dress to wear to my nephew’s wedding.  That’s the only time I have been away for several hours unrelated to work in a year.
I’m tired.  I’m discouraged.  I need sleep.  I need to get away…..but I need to go give him his shower, fix dinner, get things ready for his family who are coming to our house for an after-Christmas gathering tomorrow, and meet him many requests for assistance till I fall into bed around 2:00 a.m. tonight. Oh well, life goes on…
PS:  Don’t worry about me. I’m just using you to regenerate myself. Thanks for allowing me to share my feelings with you.  I can’t do that with Lynn; it would hurt him too much.  I’ll be fine.  I’ll see my grandson tomorrow for a few minutes and the world will be smiles and coos again.
Thanks for listening.

"I Know Someone With MS…"

When I tell friends, family, acquaintances, etc. what I’m up to these days (i.e., being a full-time caregiver for my husband while working full-time from home) it’s amazing how many people either have someone with MS in their family or know of someone with MS. What’s even more amazing, however, is how different each of their stories are.  Often how someone views the condition is directly related to who they know that has it.  For example:
“My friend’s sister has MS but they’re fine”
In this situation, they really have very limited information about MS because as we know, no one who has MS is “fine.”  Each MS victim struggles with something periodically, especially during periods of stress. Often they battle fatigue, heat sensitivity, weaknesses in functioning in some aspect of their lives either full-time or temporarily. So if the person you are talking to only knows someone who is “fine” then they have difficulty comprehending the nature of the condition and the potential restrictions imposed and may even wonder, “what’s the big deal?”  They just don’t get the condition.
“My cousin has MS and has to use a cane.”
If they know someone who has mobility issues, then they seem to have an idea that someone with MS has struggles to overcome on a regular basis.  They understand there are special needs and often associate MS strictly with mobility challenges.  Often they have no idea that MS can affect any function of the body either completely sabotagizing it’s ability to react normally or at the very minimum, creating an annoyance on a regular basis.  They have no idea that a person’s bowels, bladder, eyesight, memory, sensory stimulation, hearing, speech, eating, …you name it… can be affected. There is much they do not know but they at least have some insight.
“My sister has MS. What an awful condition.”
Once it’s in the family though, they realize just how devastating the condition can be.  They understand that the person with MS struggles each day to be “normal” to be able to have a “normal” day and fit in like everyone else. They realize that one minute the person may be fine but the next they are so exhausted they can hardly function and where before they could walk alongside someone, once they hit that point that fatigue takes over, they rarely can keep up. They know that some days they feel like a heavy weight is sitting on their shoulders and other times they are optimistic and hopeful.  They know that each new “odd” sensation raises the question of, “Is this an exacerbation?”  “If it is, how bad will it be this time and will it go away or linger?”
I see one of my roles as an MS Caregiver to be that of educating others. In the grocery store, at work, wherever I meet someone who asks about Lynn and his condition, I try to clear up misperceptions and provide insight into what MS is all about and most importantly, that it’s different for every person they will meet.  No two people with MS seem to be affected the exact same way.  Each MS person knows they are unique in their personal struggles but at the same time they are a member of a larger community who has to learn to cope each day with what that day brings. 
That’s one of the reasons why I write this blog, too.  I want those who read it to know there are common struggles but each person is unique. Don’t look at Lynn if you’ve just been diagnosed with MS and believe you will be wheelchair dependent and unable to fed yourself in less than ten years after being diagnosed because that is probably not the case. I tell anyone who listens that the only way to deal with MS is to take each day and each minute in that day for what it brings in that moment.  Don’t look too far ahead or focus on what was left behind; just do your best with what you have that day and keep the faith (literally) that God will give you the strength to carry on through one more day and one more triumph.

Just Say "No"?

I have never been one to find it easy to say, “no.”  I’m a people pleaser, I guess, but I find delight in making others happy and I enjoy helping people.  However, I guess for my own sake, and, maybe sometimes even for theirs, I should learn to say ‘no’ but how do you know when it’s the right time to do that?  Here’s some examples of times I’ve found it hard to say ‘no’ to Lynn.
When Lynn got his “back pay” from Social Security.
As is true for everyone, it took us long time to get social security benefits.  We had to wait until we could go before a judge who could see for himself that Lynn was totally disabled. So when he got his check, it was rather sizable.  At that time, he had not been in a wheelchair very long and still had good use of both arms.  Lynn loves to surf fish and he was looking ahead to vacation.  He wanted a way to still be able to surf fish and wondered if there was such a thing as a 4-wheel drive wheelchair.  He did some research and found just what he was looking for…in South Africa.  It could go over sand, climb steps, elevate his seat so he could look over things, had headlights, a horn, ahh…it was cool.  It gave him hope that he could continue to do what he enjoyed most in life for leisure time–fish.  But it was VERY expensive!  It would wipe out all the back pay if he bought it.  He really wanted it. To him it was a symbol that his disability would not wipe out his ability to have fun.  It represented freedom and gave him the feeling of being in control and out-smarting MS.  However, he felt guilty about using all that money for a toy.  He looked to me for permission to buy it.  What did I say?  “Yes,” of course.  How could I take away his hope? It was, after all, his money and not money we had already been counting on to pay bills (though secretly, I had several credit cards I wanted to pay off that I had run up with costs associated with his care). But, the main reason was I just could not take away his hope.
Was that the right decision? Yes for his mental health; no for our finances.  To this day, that machine has not worked.  We took it on one vacation and it would not move in the sand. We  sent the motor back to South Africa in March of this year and have yet to get it back.  Right now it’s a huge obstacle in my living room that has no motor and cannot function at all.  Had I known this, I would have said ‘no’ but not knowing this, his hope was more important to me than the cost.  Therefore, I still think it was the right decision because having hope when you are disabled is essential to life.
Purchasing a New Lift Device
Once again I’m faced with whether to say ‘no’ or participate in hope and once again, I’m going with hope.  Lynn wants very much to stand and if possible to walk, again.  Who wouldn’t want that?  He’s convinced that if he works his muscles well enough that he will be able to do so and that it is not the MS that has caused him not to be able to stand but the deconditioning he experienced when he was hospitalized two years ago for so long.  The doctors can’t say for sure though they believe that progression of his MS is the reason for his immobility.  However, with the change in his diet to following the Terry Wahl MS diet and his dedication to exercise, he truly is moving more than he has in years. Who’s  to say that he could not eventually stand if he was able to recondition all the necessary muscles?
The problem with reconditioning muscles necessary for standing is that there are so many of them.  Doing exercises to isolate one muscle group at a time requires considerably more energy than he has available.  Therefore, once again he has done his research and identified a device that will help him stand with assistance.  It’s called a Rifton TRAM. It allows the caregiver to put a saddle under the hips of the patient and gradually lift them to a standing position.  With the saddle in place, they have support in the amount needed to bear weight.  The advantage of this is that by bearing weight, he can activate more muscle groups plus the stress on the bones, makes the bones stronger.  Osteoporosis sets in when there is no stress to the bone and that causes bone deterioration which makes the person more susceptible to fractures.  So by using the TRAM not only could he strengthen muscles to stand on his own but could help prevent future bone fractures. 
We are in the process now of getting the information necessary to the insurance company.  However, even if they do not approve it, he still wants to buy it because he’s convinced of what he can achieve with it…and who am I to say he can’t?
What’s going through my head though?  Will he be crushed if he cannot stand and go into a deep depression?  Can we afford to pay the full price at a time when year-end bills are coming?  His son’s wedding is in four weeks and we have to prepare and pay for the rehearsal dinner as well as Lynn’s clothing and get their wedding present.  Christmas is coming which means presents.  And of course, there are the multiple bills that need to be paid.  Knowledge of all these needs causes me a lot of stress as I agree to buy the TRAM even if the insurance won’t pay. 
I really want it to work for him but I keep remembering that behemoth wheelchair in my living room and don’t want another useless device in my house so agreeing to this takes a lot of faith on my part.  I know however, that God will take us through whatever lies ahead and if it doesn’t work, He will help us both deal with that.  If it does work, then He will be gloried in helping us to get the device through faith. 
So, once again, I just say, “Yes.”

Depression

Have you seen that commercial that asks, “Where do you hurt when you have depression?” and the answer is, “Everywhere.”?  That came on while I was helping do something this week for Lynn and suddenly I realized that maybe I have “misdiagnosed” his symptoms. 
Lynn started on Rebif about two months ago.  Over the past month, he has become more and more tired the day after his shot but even between those times, he feels bad.  It’s not aches and pains but more of a heaviness–the weight of not feeling good.  He has also gotten very irritable, more impatient than usual and, though he controls it well, he gets angry very easily. 
I was talking to his primary care doctor about something else and she asked how he was doing with his new medications.  She was concerned because one of the major side effects of Rebif is suicidal thoughts.  I assured her he was not suicidal but that he was having some emotional effects and might need intervention for them but I would call back if I decided that was the case.
Later I talked to Lynn about it and told him that I thought that was what was going on with him.  He uses an antidepressant already due to struggling with depression associated with just having MS but I think he now needs more.  He thought about it and agreed, but he said to tell the doctor he was not so much suicidal but homicidal (don’t worry, he was joking about that.  He would never actually try to hurt me or anyone who came here.)  What is actually happening though is that his frustration level rises quickly and he throws off weights that he is using to exercise or he shoves things roughly out of his way or his language gets rather colorful–all of which can be signs of depression.
What is depression actually? 
It’s basically a mood disorder that can vary in degrees of severity. 

  • There can be situational depression–you get depressed because you just lost your job and finances are already tight.  That type of depression usually gets better as the situation gets better and once a resolution to the issue is found, the depression goes away. 
  • Then there are depressions caused by a chemical imbalance–the body doesn’t secrete enough of a particular chemical to keep your system in balance and depression occurs.  Antidepressant medications often work to restore the appropriate levels for the person with this type of depression. 
  • Depression can also be due to medications.  Sometimes medications will cause a chemical imbalance and changing the medication will help relieve the symptoms.
  • Then there are the medical disorders that predispose you to depression; like MS.  A significant number of MS patients develop depression either due to the lack of stimulation by the nerves to the organs that control the chemicals noted above or due to the impact of the disease on the person’s life.

When a person has depression, they lose interest in a lot of things.  When I first noticed that Lynn had depression, it was because he had a lot of “hopeless” talk and he lost interest in eating.  He didn’t want to go anywhere or see anybody.  His personality changed.  He used to love to see people but when depression started, he just wanted to stay in his room and didn’t care if anyone came to see him or not; not even his son whom he is very close to or his Mom and sister. After a few weeks of that not changing, I told his neurologist he was depressed and needed medication and he referred him to a psychiatrist.
Lynn didn’t really want to see a psychiatrist because he didn’t want to “sit around and talk about my feelings.”  I told him that wasn’t really the purpose of the appointment.  Psychiatrists  (MD) often treat with medications and psychotherapy techniques while licensed clinical social workers (LCSW) or licensed clinical counselors (LCC) often do those “talking about feelings” therapies.  A psychologist, another type of therapist, uses tests to help determine what is going on with someone and then refers them to either a LCSW/LCC or to an MD depending on the suggested diagnosis from the testing.
Going to the right type of therapist is very important in getting the help you need.  If you possibly have a chemical imbalance or will need medications, the psychologist, LCSW, or LCC, cannot do that so you should get an appointment with a psychiatrist.  If you want group therapy or the typical 50 minute therapy session where you talk about how you feel and what you can do about it, then you could do either the MD or the LCSW/LCC.
Whichever one you think you might need, go see them.  I was depressed when I went through my divorce from my first husband.  I went to a LCSW which really helped. I did need some medication so the LCSW contacted my primary care doctor to discuss what was needed and he prescribed something. So you can see that you don’t always have to have a psychiatrist but like in all fields, psychiatry has a lot of new medications coming out all the time.  I recommend that you talk to someone who knows which medications do what and what will work best in conjunction with your medical condition and any other medications you may be using.  Once you get the right mix, you’ll feel a lot better.  Then the world will start to look sunny again and you can see hope returning.
If you think you or your family member might be depressed, mention it to your doctor.  Depression is truly a miserable feeling and just like the commercial says,  when you have depression, you really do hurt everywhere and everyone around you is affected as well. Don’t wait…Get the help you need.

Hope or Reality?

It is Lynn’s belief that if he accepts that he has MS then he is allowing MS to “have” him. He says that he has seen enough people who we struggling along, maybe feeling bad, but still going along until they find out they have a serious condition.  Then as soon as they accept that they have cancer or heart disease or whatever, they give into it and no longer push through it. So what he tells people is that he was diagnosed with MS but that he refuses to accept that he has MS.
Though I understand what he’s saying, I don’t buy it myself.  I’m the type who wants to know as much as I can so I can take control of my options.  I want to choose what I do and when I do it. I want to plan for my future.  I’m a realist. I want to know, within reason, what to expect, good or bad.  I know that knowing can sometimes have a “self-fulfilling prophesy”  component to it but I think that knowing doesn’t mean you have to just accept that nothing can be done but instead it allows you to make intelligent decisions.
When we are expecting test results that may not be good, Lynn usually tells the doctor to tell me the details and he tells me to just take care of it because he doesn’t want to know.  I’ve found that’s not entirely true.  The reality is that he has to ease into the knowledge. He’s more like the person who s-l-o-w-l-y peels off the bandage while I’m the one who ripes it off, sees stars for a moment, and then takes a deep breath and moves on. 
This difference in how we view life and the future has us at odds at times.  For instance, before he found out he had MS, we bought land to build a house.  He wanted to do it all himself so for about five years, he designed the house, researched materials, and found someone to draw the detailed plans.  Then he began to build the house.  We currently have a complete foundation that has been sitting there untouched for 2-3 years.  Last summer, he decided we were going to find subcontractors to start back to work on it.  He has not made much progress on that decision other than he has selected a builder and has some contractors selected and he’s re-designing the house to adapt to being in a wheelchair.
He has changed the design of the master bathroom to make it easier to shower.  He’s figuring out how to put a floor to second-landing ramp in the living room so he can drive his wheelchair to the two lofts that will be at either end of the open living space.  He continues to work on the new home, planning for the future.  He’s looking forward to the day he can oversee it being built and moving in.  He even still wants to add a pond in the back so he can fish….
Me, other the other hand–I’m thinking, “yeah right.”   I have no true belief that we will ever move into that house.  In fact, right now, I can’t say that I even want to.  The house we live in now is wheelchair accessible.  My daughter and son-in-law live ten minutes away.  I have a good neighbor I can call on to look out for the place if I’m away.  It could certainly be designed better for us but if we moved, I would have so much work to do to get the house ready to sell and I had rather burn it down than try to pack everything we have in it! (not really but it will truly be a nightmare to pack up)
If I share that with Lynn, however, then it’s the same as if I’m saying he will never get better.  He works out every day and pushes every day to get stronger so that he may someday be able to walk again.  I have to be so careful with what I say so that I don’t take that hope away from him….but I’m afraid to hope. I know how MS works, especially when it gets to this stage.  It doesn’t go away.  I occasionally hear stories of people who were in wheelchairs who walk again but I’m afraid to hope that that will be him because I don’t want to be disappointed when/if it doesn’t happen.  But I don’t want to stop him from hoping or trying either.  He needs that hope.  He needs something to work toward….and it could happen, couldn’t it?
What if he’s right?  What if the only reason he is unable to do anything for himself is just because he needs to build more strength? What if there is not permanent damage but instead what we see is his de-conditioning from all the set-backs he has had?  What if this new diet continues to make him feel better and by feeling better, he can do more and by doing more, he gets stronger and by getting stronger, he regains his ability to walk?  It could happen, couldn’t it?  If it did, then my reality would totally change and I would be willing to move and pack and whatever else was necessary to start a new life in a new home.
So what do we do?  Hope or live in reality?  I guess I promote hope for him with a strong dose of reality for me.  I still need to plan for “what if” and I still need to make sure his needs, as they are now, are met.  He can hope but I need reality to cope….that’s just the way it is….

Answer to Prayer

 

I have often mentioned in my posts that God takes care of us and that our church is an ongoing support group for us.  I want to share with you how I know prayers are answered.

 If you follow my blog you know that several weeks ago I wrote a blog about how much I needed a conversion van.  Lifting Lynn in and out of our Impala is extremely difficult and there have been many times that I only managed to move him safely with God’s help through prayer.  I had received a lot of encouragement to look into purchasing a van.  As you know, there are really no resources for getting a handicap accessible vehicle.  There are some scholarships or discounts but the cost of converting a van is very expensive. Therefore, those discounts only go so far in helping. 

We knew we could not afford a new vehicle that we converted ourselves. The cost of a new car plus the $15-$25,000 just to adapt it was too much.  Therefore, we went to our church to ask if anyone in the congregation knew of anyone who was selling one.  We wanted someone reliable that someone we trusted also trusted.

 

Someone did.  Someone I didn’t even know personally from our congretation who had read my email request but she took the time to make contact and let us know about her neighbor.  The van was listed on Craig’s List and it was very reasonably priced for a conversion van.  It was also in very good condition.  The owner has been so accommodating, bringing us the car to check out, getting it inspected and brakes changed, keeping us informed and answering every question we had.  I feel very comfortable with him and the vehicle.  If anything goes wrong with it after we buy it, I feel certain he would not have known it was a possibility.

 

After I sent out the request for help, I just knew in my heart God would send us something… and he did, in only about a week.  By this time next week, we should have a vehicle that I can take Lynn out in without the trauma to me or him.

 

I feel very blessed today and very hopeful.  I often write about the challenges in our lives but I wanted to share a triumph this time.  This was truly an answer to prayer.