The adventure begins

In January I was diagnosed with Multiple Sclerosis (MS). I had been out hiking with my daughter and returned home and my face felt numb. I wrote it off to being cold. After several hours of it being numb I was strongly encouraged to seek medical assistance. After two months of poking, prodding, scanning and lots of waiting I was diagnosed with MS. And I am ok with that I figure we are all going to go one day so MS will be my way out. But I also ride a motorcycle there may be a more immediate way out especially considering how folks drive around here. Anyway the adventure is the drugs that I have had to start using. It is a drug called betaseron. Sounds cool right. I have to inject myself every other day with this stuff. Getting cooler right. The drag is the effects that the drug causes. The drugs number two side effect is flu like symptoms. I get them in large quantities. Fevers, sweating, chills, joint aches. This is supposed to subside but I have not found that to be the case. I will give it some more time but so far I must admit the cure is worse than the cold. Given a choice between numb face or pronounce flu like symptoms I am really liking that number face stuff was not so bad. And so the adventure begins. Lets hope the doc is right and my body adjust to this stuff.

Doing the uncomfortable

So this past weekend I sat through a two hour class complete with practical exercise and graded exam. The lesson was covered in great detail and embellished with many “real world” examples. It all lead up to one thing. The graded practical exercise.

As I posted earlier I have recently been diagnosed with Multiple Sclerosis. I was not expecting such news. I suspect no one “expects” such news. For the last six months I have been going through the process of changing diet, changing exercise activities, reducing stress and many other things in order to reduce the potential of aggravating the disease. MS is a disease that can take years to show itself, such as my case. MS can also grab someone young and hit them hard. I am aware that five or six months of me adjusting lifestyle will not show huge results immediately. So I continue the diet, the exercise and I am trying to avoid stress at all cost.

That said the last exam did not show an improvement, in fact no one suspected it would. So I am now giving myself an injection of betaseron every other day. The best hope is to see “no change” during the next doctors’ visit.

So I have taken my class, I have practiced the practical exercise and I passed the final exam. I gave myself a shot. I think the worst part was getting over it in my mind. So tonight I give myself another shot, unsupervised only the rest of my life to go. Its uncomfortable, I’ll get over it.

You just never know.

The last few years have been some of the most challenging in my life, in many ways. Growing up I had many challenges many but not all were as a result of parents frustrated and no knowledge of how to regain control of themselves or the situation. Those were challenging years and once I left home I moved into more challenges but those were not the same and not as bad because I “chose” the path I was on.

In January this year I found myself frustrated again, or rather challenged again. I had some issues with lack of feeling on my face and after much pushing from family and friends I went to the doctor. After much poking, prodding, scanning, chemical analysis I was diagnosed with Multiple Sclerosis. I did what everyone does. I got a second opinion. Again after much poking, prodding, scanning, chemical analysis I was diagnosed with Multiple Sclerosis. So over the course of the last year I have gone to the doctors and done as I was told to do. During my last visit I was told things are not “better” not good news. I now have to take injections of betaseron a drug from a family of drugs used to fight cancer. The intent of the drug is to lower the body’s immune system. So side effects are flu like symptoms, oh joy. My issue here is I have little choice on this. MS has no cure, no known cause, no guaranteed solution. Worse still the disease is not the same for all effected. In fact is it almost unique to the individual sort of like a disease thumb print, only one. One of the things that also became apparent at the last session with the doctor is I have had some noticeable loss of strength in the left side of my body. I was surprised and frustrated at the finding. So this week I started running and exercising again. I had stopped for several reason one of which was pain. It appears pain is a symptom of MS. So now I am running and doing strength training again and doing it with my pain. What a pain.

I have health insurance which is a good thing. This medication has to be taken every other day for the rest of my life. Near as I can figure a months’ supply is around $5000. There are still some things I need to change just to meet the doctors’ requirement. They too will cost dollars.

I am forcing myself to make lots of changes. I am trying to walk away from the frustrations of my house, on occasion my family, and my work and just relax. I am forcing myself to get back into a routine of exercising and taking care of my body. This thing called MS which no one can define for sure has reinforced in me that “you just never know” what tomorrow will bring and it is best to make the most of today.

Appearances

Things are often not as they appear. I had a conversation with my wife yesterday about the appearance of someone we both knew. And it occurred to me that we really do see in people things we want to see or are looking for.

When I was growing up I was often a victim of “appearances” that were not correct. On several occasions I was blamed for issues and actions that were conducted by one of my brothers. Some of them were masters at “ventriloquist goodness or badness” They would have done something, like playing with matches, and deflect blame to others, principally me. My mother saw what she wanted to see and looked for “truth” where she wanted and expected the truth to be.

I saw nothing wrong with the appearance of the acquaintance I am referring to, I am not really sure my wife did. But I am aware that my wife often “looks” for the subtle, subliminal and not immediately visible in several areas, and often finds them.

I like to take people at face value; yes that has left me high and dry. But never more than the first time. Several folks and family members have taken advantage of my unwillingness to look for the ugly but accept them at face value. They abuse the privilege of being accepted for who they “appear” to be. So the acquaintance my wife is referring to is for now what the eye sees. Hope that does not change, but I also will not go looking for the change. And if all goes well I won’t find it.

Oppertunity

I am about to have a week of the home being lopsided or a week of opportunity. Growing up it seems there was plenty of opportunity to be lopsided. But as I think there were those occasions of opportunity. For several years many of my family would go to the Catskill Game Farm an animal park in the Catskill Mountains in upstate New York there were lots of barn yard and semi-tame critters on hand. It was as close to a vacation event that our family had. The big reason we went every year is that my mother loves critters of all kinds. For me it was an opportunity to do something different, to get outside the normal home activity. That annual trip ended about the time I was 10 or 12 years old. I think mainly due to the fact that the family had gotten to large making the logistics of a day long trip too hard.

This week my wife is going away for seven days. She will be spending a week with her mom and a couple of her sisters. They are going to travel to places and see things that many people never have an opportunity to see or do. She has some reservations because it is out of her normal routine and I suspect comfort zone. She will be spending an extended period of time with family she does not normally spend time with. That always provided an opportunity to stretch and adjust. There will be lots of time spent traveling by air and rental car. There will be hotel rooms, beaches, buses etc. All of those opportunities are not the normal for my wife. There will also be opportunities for my. I get to play Mr. Mom for the entire week. I will be taking kids to the doctors, dentist and various appointments. I will be making my own way to my own doctor visit. I will be cooking, cleaning, and managing the house. All task my wife as done well for many many years. I am more than a little nervous. Occupying adults is one thing, occupying kids very different. On several occasions I have encouraged my wife to “go” even pointing out that the tickets are now purchased she “will” go. But I must admit life will be lopsided. My very capable help mate will be gone for a week. She has had me leave many many time for periods much longer than a week and has managed the “home” without me. I hope I am as capable.

The kids and I will be doing “stuff” it will not be the Catskill Game Farm but there will be events and activities that I am hoping will be remembered. My wife will be enjoying an opportunity never afforded my. She will be getting away with family that wants to be away together. I hope she makes the most of it, a number of families never have that opportunity. Me I will have opportunities to cook real meals, spend extended periods with the kids, do laundry, manage the house, water the garden, pick the vegetables, and many other things my wife normally handles. It will be an opportunity, it will also be lopsided the other half will be gone.

Growing up it was very lopsided. The other half was gone, at work, all the time. My family will survive the week just fine, maybe even enjoy it. Growing up many of my siblings did not recover from the lopsided childhood.

When Help Is Not Help

This past week I have received a few “notices” about my lack of connection with my parents, in particular my mother. As stated many times before we have never been close and on many occasions been hostile. I received another notice from someone whom I have only met in person about a half a dozen times. I finally had enough and called my mother.

Calls to my mother have been primarily me taking the initiative and calling her for as long as I can remember. Invariably the calls are always focusing on who has done something “wrong” and who has not done what my mother expected them to do. The individual names change the individual circumstances change but the general conversation and tone are as consistent as the son raising In the morning. Always one of the issues is who did what with the money they had. It makes no difference how the money was acquired. The movement of money among my family is a topic of conversation.

So I called home. And I had the same conversation I had 47 days ago which is the same one I had last year or ten years ago. My parents have not paid their mortgage payment for over a year. It isn’t that they do not have an income because they do. Choices were made that were at best risky. On top of not paying the mortgage taxes have been left unpaid and the IRS has long since been after their “just due” All this adds to a debt of well in excess of $50K dollars. They do not have that kind of money. Ten years ago I was visiting my parents and spent an entire afternoon going over their financial records to convince them that the bank did not “screw it up” but that they had in fact not paid the bill. After all was said and done I was then told I was wrong as well. Then and there I decided never again will I provide financial assistance. That flagrant disregard for managing money has been passed to most of my siblings, but not all. My mother did not ask for help but she certainty made it clear she was well over her head with debt. I listened attentively tried to respond appropriately and eventually said goodbye and hung up the phone.

There was nothing I could do. During the last 12 months I have had major issues with my house that have forced me to use credit cards well beyond their function as an emergency tool. Major water damage, central HVAC unit failing and foundation issues all conspired to clean out the checkbook. There was and is nothing I can do to address debt of parents especially on order of $50K+ dollars. I am currently hard pressed to address issues of $500. Countless times I have offered to help, I offered to use my VA loan guarantee to buy the house, I offered to work with their bank to reorganize debt. I finally stopped offering. They are in a fix and it is a fix they will have to work their way out of. I hate to say it but my help has not been any help for years no reason for that to change now.

Maybe they will call me next time..No I am not betting the farm on it.