MSwife

The New Generations

2011-08-04T19:00:00.000-07:00

Lily met her cousin Owen recently at at visit with the family. It was so cute to see them playing together. Owen's dad is my hubby's nephew. His grandpa is my husbands bro and he's in the hospital right now not doing to well. I sure wish he wouldn't have come down here. It was too much for him and now he will suffer.Lily is about 14 mos and Owen is just about 4 mos here. This was the families first meeting with this generation. They are so cute and Lily wanted to just hold him.

We had a simple dinner as we we're all just worried about Dale. We didn't get to see him at all. The hubby visited him in the hospital but he was really out of it. He got home and within hours he was back in the hospitals. Then went home then back to the hospital but this time he was in a coma and on a respirator. He was really in bad cond. and we didn't know if he would make it this time.

Dale needs a liver transplant. Finally came out of the coma and was released today, Thursday. I spoke with him on the phone as he was being driven home. So nice to hear his voice.

Thats all for now. Expect Chrissy is doing well in her new place with Lily. Things are finally mellowing out. Thank goodness!!!

Happy Days are Here Again!

2011-07-01T07:15:00.000-07:00

Well its been way too long since I've added to this blog. Truthfully, up until recently things have been extremely tough. But things have taken a turn for the better and we are actually do quite well. There are still aspects that we deal with from day to day that are somewhat difficult, but they are our normal.

That's one thing I have learned, out of hundreds, that really remains true. Things aren't what they use to be, but things are normal. Its taken us a couple years to finally reach this point where MS is just a houseguest. In other words, its part of our day to day life, but its not at all what defines us.

We just celebrated our 26 wedding anniversary. What an accomplishment these days especially with our medical issues. We have found our normal, which may seem completely and utterly abnormal to most. Things I can't put into words, yet.

The grandbaby turned 1 a few months back and is the light for us. We know that she and our daughter will be constants in our lives and that is lucky for us. Lily reminds us that things aren't all that complicated. You wake up in the morning, go to the bathroom, shower, dress and eat breakfast like everybody else. We can't open her eyes to our afflictions actually we won't. We don't want her to feel like her nana and papa are ill or disabled. Not that there is anything that we have to be embarassed about, its just that we want to be her grandparents that she deserves.

Papa and Lily at Train Town

Mommie and Lily at Train Town

GG and Lily just loving eachother

One of the coolest things of late has been our family relationships. We've been pulling closer to them and its added alot to our lives. Not that we weren't close before but my parents are getting up there in age and I don't want to have any regrets with our relationship. I work with the elderly. Have for 30 yrs or so. I've seen families pull apart and when the time comes to say goodbye, the regrets seem to overcome them members that remain. I don't want that.

Well that's all for now. Except that my hubby is doing good. Working as a truckdriver still and to this day remains my hero!

Update: We are doing well

2009-11-18T07:13:00.000-08:00

Good Days, Bad Days................

I have to say that the past few months have been pretty darn good. We have had much to look forward to and are very excited about being grandparents. Its amazing to watch the daughter as her body changes. Knowing that she is "housing" and "feeding" our little critter.

Love, Love, Love the idea of her living at home right now. Being a part of this, but closer than most get to be. I would be very sad if she wasn't at home. My husband, who is doing really well, is probably more excited than I. He has wanted to be a grandpapa for a while. Knowing very well that time is not his friend, feeling that his days to be a grandpa are numbered.

I try to get him to live healthier. I offered up my time in an effort to start up the "MS Recovery Diet" with one stipulation. He must quit smoking. The one thing he is doing that probably speeds up this terrible disease. I don't know if he's thinking "what does it matter, I'm gonna go down when I go down, and I can't stop it". I try to give him the numbers on the progression possibilities with and without 'living healthier' but he doesn't see to care.

I know I said things were good, and they really are. But some things never change and him smoking is one of those things. I want him around as we age. I want him here to enjoy our family. The one thing that life, to me, is all about. FAMILY

The MS Recovery Diet

2009-09-26T21:12:00.000-07:00

So we have just began reading this book. I began first, trying to make sense of it all. One thing that I've noticed is that there is no shortage of information on MS out there. In fact in some ways I think there is too much information. What I mean is that some of it is contradictory. I've been trying hard to work through everything and hopefully come out with a better understanding of what MS is and the best way for our family to cope with its wrath.

The only catch to my plan is that my husband must quit smoking. I feel that this 'ms recovery diet' will require much of my time and energy to put in place. If he's not willing to meet me half-way, for his own good, then I won't invest the time and money it will require of me. I know this sounds extreme but from what I've read, smoking may contribute to the progression of MS. If he wants to work together on this, I am more than happy too.

I would love to hear from you if you've tried this diet. What you think of it and do you see or feel any changes. Share with me your experiences, I would really appreciate your input.

A long time since last intimate moment........

2009-09-17T21:05:00.000-07:00

Okay, so I understand that having MS makes feeling intimate with someone different than it had previously. What I mean is I know that it may "not happen" but its the closeness that I am really missing. The hugs and the kisses. I remember once right after he was DX that he said to me "Hugs just don't feel the same". I know he didn't mean to hurt me, he was just sharing his feelings. Trying to be honest. Trying to explain what he was going through. I appreciate that believe me I do. I don't want to sound like I'm complaining. Although in all reality I am. Just because the hugs don't feel the same for him, doesn't mean they feel any different for me. I still need to feel that closeness and wonder if I ever will again. How can I live without that closeness. Its always been the one thing that would bring me comfort. A big hug from my man; We called them "power surges". Because that's what they were. So you see its not the sexual intimacy that I miss the most, its the spiritual, the feeling of "ONE".

2009-08-14T01:36:00.001-07:00

I juST dont understand.

Dealing with the anger................

2009-07-28T21:46:00.000-07:00

So, not sure where to begin with this one. My husband is angry, and with reason. There is a horrifying element in his life that he cannot control. He is having problems accepting his illness and all that comes with it. I can understand why but I can't give him answers as to why he was stricken with MS. I sure wish I could.

I've suggested to him the possibility of going to some sort of therapy. Much to my surprise it didn't take any convincing. He was very open to the opportunity to open up and let it all go. So, he has asked that I set this up for him. I've taken this on only because he works during business hours, and really can't make the appropriate calls. He trusts that I will find someone for him that he'll feel comfortable talking to. He says 'who better' than me to accomplish this task. I am his wife, his friend, his lover and his caregiver.

I will look for a female psychiatrist (or psychologist) whichever is appropriate. He's somewhat old fashioned in that speaking to a male regarding these issues wouldn't be manly. Some of the other reasons for this are more intimate in nature. Although our relationship is strong, there are weaknesses in the physical aspects that need to be discussed and worked through. These issues have come up since he has started on MS medications.

My other concern right now is regarding when he should stop working. Do I leave it up to him to decide? Truthfully, in a financial aspect, we need him working. With work comes medical coverage. I really think if it wasn't for that and the fact that we just bought a home, he would choose to go on disability. He feels, and is probably correct, that not working would only depress him more. He comes from a line of hardworking men and that is what men do, WORK.

On the other hand, I worry everyday about him out driving that big rig. Physically is takes alot out of him and I wonder if this energy would be better used to fight his MS. In that he would be more rested, eat healthier, and be safer doing something less demanding on him.

So that is my question.....When is it time to stop working when you have MS? Do you wait until you physically cannot work or do you leave before that point?

Please anyone who reads this give me your opinions and stories. For or against, it doesn't matter. I just need some input on this if possible.

Thanks for reading.

L.Bess

MS and 'New Piorities'

2009-07-24T13:24:00.000-07:00

As much as I love him I wonder if he'd be happier on his own sometimes. He seems envious of his single friends. One in particular. If that sounds a bit jealous on my part, honestly, I think I am in some ways. I don't want to smother him, but sometimes he doesn't think before he acts. I know he's worried about what the future has in store for him. But that is true for all of us. I know he loves me and I am secure in that. I just hope he doesn't have a mid-life crisis on top of everything else.

This disease, I think, has made him rethink his priorities. Family and friends are still important, but accomplishments and goals are moving up. The old adage 'He who dies with the most toys wins' is one that he seems to be living by these days. I'm not saying that he's being selfish at all. I'm just noticing a difference in the way that he approaches things as of late. This is not me judging him. This is me noticing changes in the man that I love. Not always negative changes, just little things that once meant something to him are no longer as important. No, I can't really make a list, its just what I've noticed as of late.......

The intimacy we once shared has most definitely changed. I know he has a lot on his mind and that stress and fear are playing a big part in how we are relating to each other behind clothes doors.. I have recently brought up the possibility of seeing a professional. Hes was very receptive of this. So, I'm trying to set something up for him through his PCP. So that is a positive step for us both and is in the works. I don't want to bombard him with too much all at once. But I too am having some issues. I don't want to sound like "poor me" here but my part in this is big. We just bought our first home. The only reason I went along with this is because it was a dream of his to own his own home one day. I had and continue to have so many reservations. What happens if the unmentionable occurs. If he can no longer work. When he can no longer work. I don't think he has seriously accepted that he has a incurable disease. I can't blame him for that. I wouldn't want to face something of that magnitude. Although I myself was dx with RA 8+ yrs. ago. He doesn't think mine is comparable to his. I find it hard to complain of pain in front of him because he just says something like "try living with it 24/7". Before he was dx he was very compassionate regarding my RA. He has always taken very good care of his family. When I read this all back it sounds so petty. I don't mean it to at all. But then I too have the right to be happy and I know I would be unhappy without him in my life. Sometimes it feels like we are two people working for 2 different goal, and I just pray that we will meet somewhere in the middle.

Symptoms of MS, common or otherwise

2009-07-19T15:12:00.000-07:00

Multiple sclerosis symptoms generally appear between the ages of 20 and 40. The onset of MS may be dramatic or so mild that a person doesn't even notice any symptoms until far later in the course of the disease.

The early symptoms of MS can include:

More common-

Tingling
Numbness
Loss of balance
Weakness in one or more limbs
Blurred or double vision

Less common-

Slurred speech
Sudden onset of paralysis
Lack of coordination
Cognitive difficulties

With the progression of this disease, you may encounter other symptoms such as sensitivity to heat, muscle spasms, fatigue, thinking and perception changes, and possibly some sexual annoyances.

Fatigue- Of all the symptoms, this is most common. It often occurs in early after noon but not limited to just then. During these periods you may feel mentally fatigued, muscle weakness, drowsiness, and some restlessness.

Heat Sensitivity- This occurs in the majority of people with MS. When exposed to heat, even in a shower can cause the worsening of symptoms and there appearance.
Spasticity. Muscle spasms are a common and often debilitating symptom of MS. Spasticity usually affects the muscles of the legs and arms, and may interfere with a persons ability to move those muscles freely.
Dizziness. Many people with MS complain of feeling "off balance" or lightheaded. Occasionally they may experience the feeling that they or their surroundings are spinning; this is called vertigo. These symptoms are caused by damage in the complex nerve pathways that coordinate vision and other inputs into the brain that are needed to maintain balance.
Impaired thinking . Problems with thinking occur in about half of people with MS. For most, this means slowed thinking, decreased concentration, or decreased memory. Approximately 10% of people with the disease have severe impairment that significantly impairs their ability to carry out tasks of daily living.
Vision problems . Vision problems are relatively common in people with MS. In fact, one vision problem, optic neuritis, occurs in 55% of people with the condition. Most vision problems do not lead to blindness.
Abnormal sensations. Many people with MS experience abnormal sensations such as "pins and needles," numbness, itching, burning, stabbing, or tearing pains. Fortunately, most of these symptoms, while aggravating, are not life-threatening or debilitating and can be managed or treated.
Speech and swallowing problems . People with MS often have swallowing difficulties. In many cases, they are associated with speech problems as well. They are caused by damaged nerves that normally aid in performing these tasks.
Tremors . Fairly common in people with MS, tremors can be debilitating and difficult to treat.
Difficulty walking. Gait disturbances are amongst the most common symptoms of MS. Mostly this problem is related to muscle weakness and/or spasticity, but having balance problems or numbness in your feet can also make walking difficult.

Other rare symptoms include breathing problems and seizures

A little background........

2009-07-19T10:50:00.000-07:00

Our families lived completely different lifestyles. He was born in the Napa Valley, and raised here on a small ranch. I was born in Grass Valley and lived there until I turned 8. At that point my parents decided it was time to move. My father rec'd a job with the State Of Ca., Parks and Rec. We began what would be a 12 yr life within the Ca. system. We were transferred to San Diego Ca. living there for a bit. Then to Carlsbad, Santa Barbara, Goleta, then Gaviota. At that time I was in 10Th grade. Stayed there longed enough to make friends. Then the orders came down. We would be moving once again. This time at least we had a choice. Each choice was 300 mi north of where we currently resided.

His choices were Lake Orville or Bothe Napa State Park. After visiting both locations, he decided that it was to be Napa Valley, CA. He would be stepping in to a supervisory position which he had been working towards..

So, I finish my 10Th grade year at Santa Ynez High School. The first place I had actually met and made some great friends. I let my guard down and in turn I was accepted. I really enjoyed living in Gaviota and going to SY high school. I joined the basketball team.. For the first time I can actually say that my life was full of friends. I had a couple best friends and actually more than one boyfriend.

So the summer of my 10th grade year we moved 330 miles north. Bye bye Socal, hello norcal. I was gonna miss my life and my friends. It was very hard this time. We've moved so many times that I had gotten use to it. Or I thought I had. At 16 yrs of age, friends are very important. My issue and it would continue to haunt me for the rest of my life is that I don't know how to maintain a friendship. With all the moving, I stopped trying to maintain the relationship. Sad but true. To this day I don't have one friend that has been there for longer than a few years. So, that is a real difference between myself and my husband. He still has many friends some date back to 1st grade.

I moved to Napa in 1976. I actually made some friends. Things were pretty good. I met Strap just after I graduated in 1981 from a local high school. We dated for a couple of years. We got married in 1985, and we had our first child in 1987. A little girl. PERFECT. She is the light of our lives. We had a pretty good life. Some bumps along the way but all and all we are doing well.

During the next few years we moved alot. Its funny. Now I see a pattern. Although we never left Napa, we must have moved 4 or 5 times since we got together. We volunteered with the local Pop Warner program as our daughter was a cheerleader. That began in 1997. I was dx with RA shortly there after. We continued with the PW program. I became a coach for the cheer side and the hubby was the bbqer at games. We were with this program for about 8 yrs. I ended up being the Cheer Director for our final year, 2005.

In 2007, just prior to straps dx we decided to buy a home. I spoke of this previously. It was pretty stressful from beginning to end. But we have our own home. Its a dream come true. It may not be what family members would have wanted for us but we are quite happy. Our payments are less than what we were putting out for rent and it won't be too much to take care of later on, with all things considered.

We have my daughter back with us for a short time and our nephew. Once they move out on their own the house will seem bigger. We have done a lot of work with the assistance of family and friends. One friend in particular. My hubby's best friend Tim. He really has come through with some major time and we couldn't have done it without him.

We had the wood floors refinished, the interior painted, a tankless water heater, and most recently a sliding glass door. This house is ours and we actually are quite comfortable here. I still have it somewhere in the back of my head that it was probably not a good decision but I felt that my husband deserved to at least get a chance to own his own home. We have a large yard with flowers and a garden. We enjoy being out there just as our parents did with their yards. Its funny how I used to harass by parents about all the time they spent in the yard gardening, little did I know how therapeutic it was. I now know.

My husband is my best friend. The only real girl friend I have I rarely see. Its my fault as I've stated because I don't know how to keep a friendship going. I just never had that experience. She knows me pretty well and she is always there when I need her. I know that's not fair but I don't know how to change it. I would love to go shopping or out for drinks with her but I just can't seem to make the effort. Maybe some day. We all say that about something, don't we.

Our big decision...........Strap's dream come true.

2009-07-17T10:10:00.000-07:00

Strap's biggest dream is that one day we could actually own our own home. I also hoped that would be possible one day. But when he was dx I really felt that was a dream that we both would never realize. How could we ever own our own place with the uncertainties that we faced in regards to this disease.

We swore that this last time we moved would be it. We would be renters for the remainder of our lives. Paying someones mortgage for them and never actually having our own home. We were okay with this and actually accepted it.

Then we were forced to move once again as the landlord lost his personal home in the mortgage crisis and needed to move into his rental, our home. We understood the dilemma but we weren't very happy about moving again. We started on the hunt to find a place we could call home for a long term stay. We did find a place. It was quite a bit smaller but the yard and the layout were fantastic for us. It had a 4ft cyclone fence around front that would allow my grand nephew a safe place to play, and me enough room to grow my flowers. The landlords were awesome and we really loved that ours was a corner lot. Although it was a duplex, not having a neighbor on the left really made it seem like a house.

So we moved in. Within a few months the whole Mortgage crisis situation came into play. We were wondering what if any chances we had to actually buy a home. I also worried about the future of this disease that my husband was dealing with would worsen, how could we manage our own place.

It was Strap's dream. So for 6 months we began to concentrate on saving money for a down payment, just in case. We contacted a friend in the business who referred us to a woman here in Napa. She seemed to be very compassionate and understood our needs. We just wanted a little house with nice yard that we could work on. We have great friends and family to support us. A great friends or two that were knowledgeable in home construction. They agreed to help us with cut in labor costs.

We looked at 100s of homes. We ended up putting an offer on this home that we both had fallen in love with. But it was considered a 'short sale' which meant it could take alot of time. We decided to wait. We did continue to look for others while we waited word. Months went by and we decided to put an offer in on another home. This place had issues that would need to be dealt with prior to our buying it. The city had red tagged several areas. The seller decided to fix it but really had to at this point or it wouldn't be sold.

The areas were fixed. Our offer was be considered and we hadn't heard from the 'dream house' at this point. We needed to get this moving. So we pulled our offer, after 4 months of waiting, on the dream house. Our offered was excepted on the 2nd home.

To make a long story short, we dove in probably with our eyes closed, and we both new that it may not work out for us. Within 2 months, the house was ours. We began to work on it to make it liveable. We hired a buddy to refinish the wood floors. Another to paint the interior and we also had a tankless water heater installed. Wow! What a difference. Its looking like a place we can be proud of. All the while we both, in the back of our minds, are concerned regarding whether or not this was a wise choice for us. But we can't undo what we have done. Nor at this point in time would be choose to.

We just did our first major structural change. We put in a sliding glass door. I had to keep my eye on Strap as he tends to push himself and then he's stuck feeling the consequences. So I myself watched him and those that assisted us watched him. We made it through and now we can't imagine there was once a just a window there. Its so beautiful. The doors have the levelor blinds inside. DUST FREE hooray.

Our Life Post DX

2009-07-15T07:29:00.000-07:00

Its been approx. 2 yrs since my hubby, we'll call him Strap, was dx with MS. RRMS to be exact. It was first thought to be a pull or pinched nerve for which he sought out a chiropractic answer. Several weeks later when we decided that this isn't getting us anywhere, a close friend mentioned to me that someone she knew had similar symptoms. She told me that I should have Strap's doctor look into the possibility of MS.

When I picked my heart up off the floor, we decided that we should check into that if only to alleviate it from the list of possibilities. Besides, my husband of 24+ yrs., my heart, my soul couldn't possibly have MS.

But when we looked at the whole picture and we saw the symptoms staring at us from the web pages, we began to suspect it was a possibility we may have to face. But we took a deep breath and shared our concerns or fears with his primary care physician. He in turn began setting up appts. for different studies or tests, and telling us not to worry.

He referred Strap to a neurologist at this point. We continued on with our daily lives, going from one appt. to the next. Still unable to work physically, Strap began to get very frustrated and depressed. Not finding relief from this nagging pain unless he took pain medication. His description of the pain in his upper back was that it felt as though he had termites chewing. His doctor was pretty sure it was just a pinched nerve but went ahead and scheduled an MRI and a Spinal tap in an effort to rule MS out.

The spinal actually came first. This was very scary for Strap. He’d never had one before, but had at one time, an epidermal. This was for a back injury he got from his job as a driver and stocker of building materials.

We tried to remain positive. But the more I read the more I began to think it was indeed MS. The symptoms seemed to point right to MS. I researched online as well as read as much as I could to become more knowledgeable on the subject, just in case.

So, the time comes when we receive the diagnosis. He had been referred to a neurologist in a nearby town prior to all the big tests. She began a battery of tests from blood work to MRI’s. But it was the spinal tap that actually clinched her diagnosis.

Strap is a very hardworking man. He has always worked hard and when he began driving he found his niche. Working for a few different employers, earning awards and trophies along the way. He began with his current employer about a year prior to this all happening. It was the company he’d been hoping to work at for several years.

It turned out that this company was not only generous with benefits, they also care about their employees. Its like a big family there. When Strap was unable to fulfill the duties he originally was hired for, they found something for him to do so that he got the 30 hrs requirement in for the medical coverage. This could have cost us $400 a month or more.

When we were given the dx, we had to decide whether or not we should inform the company. Strap felt somewhat confident that they would work with him, but we had our doubts. We asked the advice of family and friends. We took time to look at all the pros and cons associated with being upfront vs. keeping it quiet.

After deliberating, we set up an appt. with the head of the company and Straps main supervisor. Strap felt he needed to be honest with them and just hope for the best. With a letter in hand from his doctor stating that he was physically able to perform his job, with only a few limitations.

The day came when we finally met with his supervisor and the head of the company. We explained that what was first dx as a pinched nerve led to the dx of RRMS. As with most people who first hear, they expressed there sympathy. Then they followed that up stating that if he was indeed cleared to work and wanted to continue, they would make any changes necessary to support that decision.

Strap asked for some time, approx. 1 month, to get on a medical treatment and become stabilized. They agreed wholeheartedly and shook hands. We provided them with the letter from the doctor as well as reading material regarding things that may affect his performance. Strap told them that his record with the company, to this point, should speak for itself in that he is a hard worker and very reliable. He followed it with stating he truthfully can’t say how long he can continue at this job, but he loves his job. He will continue to work hard and provide as close to 100% as possible.

They in turn have made every effort to keep Straps working environment as safe and manageable as possible. They recognize the fact that there are going be some days that he just can’t perform his duties. His co-workers, as well as his supervisors, can usually spot when Strap is not up to par. His body language says alot.

They keep his work truck serviced with close attention paid to the air conditioning. They are very aware of his issues with heat and fatigue. He has permission to take rests when he needs to. He is also allowed to run his truck's air conditioning 24/7, when needed. They also know that if he calls in and states he is unable to come in, he’s not lying.

So, after being on his betasoren, drug for ms, for approx. 1 month; and experimenting with differents meds for pain and fatigue, he was able to achieve a level where he could return to work, safely and confidentally.

Back to work, on a limited schedule, Strap was definitely much happier. That's not to say that it was easy on him. He struggled for quite awhile, but eventually he found some balance. We started him on supplements that have been shown to have positive effects on MS sufferers. He has his good days as well as his bad ones.

Our last MRI showed no progression, and no new lesions. Yes, you read that correctly. I said "OUR". You see, this disease affects him physically but its something that we all need to face. Its not easy. There are alot of things he can no longer do, but there are many more things that he still can and its up to me to remind him of this.

So this is where I will start and I will do my best to not bore anyone, but no promises here because what may bore one person may very well help another.

Thanks for reading.