We also have had major car problems. I guess everyone goes through these things. We had an appointment to bring John’s car in to get the air conditioning fixed. On the night before we were supposed to bring the car in, my car began acting up. Well more than act up, I couldn’t get it to go over 20mph. John has always been a “driveway mechanic.” Before he got sick, he did a lot of the work on our cars. This one left him with his head shaking. We had no idea what it was but knew it was not good. We told the mechanic that we were switching cars and hoped for the best.

The next day we got the bad news. The catalytic converters are integrated with the engine. They had melted, blocking up the entire exhaust system. The cost — over $5000. Also, our extended warrantee company would not cover it because it’s exhaust. We grabbed the policy and saw that while the policy did not cover exhaust, it did cover the engine.

LET THE GAMES BEGIN!!!

Well, John spent the rest of the day on the phone with the warrantee company, the mechanic and another mechanic all without success. We both went to bed mad at the world. The next morning John was still grumbling and said that he was going to take one last run at the warrantee company. I told him to let his “New Jersey” out and go at it. They of course, said no again so he asked for a manager. Another exchange of calls, another manager. Back and forth it went until (I think they were tired of hearing from him) we finally got a call saying they would pick up $3000 of the cost. We were thrilled. I think they were too because it did not cost them $5000.

People laugh at me but I’ve always used the expression: if you are not getting the answer you want, keep being a “pimple on their butt” until you get an answer. It works just as well with doctors. Don’t ever let them play “high and mighty with you.” Persist, persist, persist until you get someone to listen. In the end you still may not win but at least you will have the satisfaction of knowing that you did everything possible.

The diet started because I figured that I have to be as light as possible if this is to work at all. There’s no way for me to get onto a scale so it’s hard to judge my weight. I can only tell that my clothes seem to fit better. I am also trying to exercise and stretch every day. As the picture shows, there has been some progress. That’s the first time I have stood up without braces in about four years. Now, my son and son in law had to help me get into a standing position but I was able to hold it there for about thirty seconds with only a little help. It felt great! There is still a huge mountain for me to climb so I ask for your prayers that I can succeed.

On another topic, a lot of people have asked me about MS and what leads to the disability. The loss of myelin from the nerves is sometimes hard to visualize. Linda found a great illustration in the MS society’s Facebook page. It clearly shows a healthy nerve and one where the myelin has been destroyed. It’s kind of scary when I think that’s what’s happening in my body. It also makes me grateful that there has not been more damage.

As I said, please keep me in your prayers and remember that we have got to keep fighting and never – ever let it win.

My second angst was hearing from a very good friend that her husband was sick. She has been there for me and my family for over 40 years. She is the best I can think of in a human being. My children love her as family and would do anything for her. Now it is my turn to help her learn how to care for her husband during this difficult time. It is sad to see someone you love suffer from an illness and you really cannot do anything but to support the caregiver at the time. She is one of the best for giving of her time and love to people. She even runs the Specials Olympics in her county, dedicating countless hours of her time to help others. She gives this time, strength and love to these young men and women who just want to be the best they can be.  Now she needs our support for her needs and we will give it to her.

As a caregiver for John she has seen what I do for him. Now we can share our experiences as she goes through this situation. As we get older our lives turn in different directions. My situation with John can give me the strength to help her get thru this time. I have to remind her that she needs to take care of herself as well as the patient in order for things to go as well as they can go.

Today John and our son Robert ventured into the city to go to the car show. It is held each year at this time and they love it. I am so grateful that they want to be with each other and share it together. Usually a friend of my son’s also goes, but this time he could not make it.

It is a wonderful day when they spend it together. It is a great help when John and Robert go out together especially for a few hours. It gives me peace not to mention Quiet!!!! I have no worries, no nervousness and can do a project without any interruptions. Except for a few phone calls etc, it really is a gift.  I know I probably sound somewhat selfish but I love those days. I remember having them often when the kids went to school and John was either at work or on a trip. The weeks he was on a trip were even better because the kids loved the fun dinners we had. Beside the fact, I could continue with the porfect knowledge that I could work on a project and I would not disturb John. Now, as a caregiver, I always have to be mindful of that other person in the home with you, wondering if he needs something and stopping what you are doing to help him or her.

Well, I think I will go back to my quiet day before they come home and the ruckus begins. Happy Spring and enjoy one day at a time.

The other day, we had just finished their daily snacks when John told them that he actually stood up. You see he has been on this strict diet and exercise program since early February. He hopes that if he can get light enough and work his legs he may actually be able to stand and walk some. As he puts it “I only have a few comebacks left so it’s now or never.” Well, when he told them this our seven year old granddaughter lit up and said “you know Grandpa, I did that.” When we asked her how she said “every time I go to church I say two prayers. The first is for my Grandma in heaven. She doesn’t really need it because she’s in heaven and doing okay now. The second is a BIG one for you so that you can walk some day.”

John and I had all we could do to fight back the tears. We think that they are little and don’t process all of the things around them. Yet here is a seven year old child who has taken it all in and has such an adult wish for her Grandpa. As I said, it took all we could do to keep from crying our eyes out.

In closing, we both want to wish our Jewish friends a Happy Passover and our Christian friends a very Happy Easter.

Whenever these things happen, I can’t help but wonder what we would ever do if I got sick for a long period of time. It’s probably the same fear many caregivers have. Our patient’s rely on us for so much. What would happen if we are suddenly unable to supply the help that they need? We also spend soooo much time worrying about their health that it’s easy to forget that we have health needs as well. Think about it, how much time do we spend in doctor’s offices with all of their “…ologists” verses the time we spend getting our normal health needs taken care of. It’s too easy to put off our appointments for the simple reason that we don’t want to sit in another darned doctor’s office. As a caregiver for an MS patient or any patient for that matter we owe it to ourselves to “bite the bullet” and make that appointment. Anything else does a disservice to ourselves and our patient.

We got some news about me this week. It seems that I need to have a cataract removed from my left eye. I had one removed from the right eye about three years ago. They told me then that I had a slight one in my left eye but that it could wait for a few years. Well, it’s been a few years now and it’s time to do it. I have an appointment with the eye surgeon this week and will try to schedule it as soon as possible. Anybody messing with my eyes makes me nervous so I am not look forward to it. I’ll let you know how it goes.

John told an interesting story this week. He did a lot of traveling when he was working. He and his boss had an overnight stay in Rome as they were coming home from some meetings. Well, as usually happens on these trips, they had only about three hours to see the city. They commandeered a cab and talked the cabbie into staying with them. While coming out of St. Peter’s they were stopped by a priest who asked if he could have a ride to his hotel. Well being good Catholic boys they said yes. They talked a lot in the car. John remembers him as being very impressive yet down to earth. The priest blessed them and some rosary beads John had bought for our daughter and myself.

The other day, John received a call from his ex-boss. His boss asked “did you see the new Pope? I think that’s the guy we gave a ride to.”  We turned on the TV and John yelled “THAT’S THT GUY!!” No doubt in his mind whatsoever. If you think of the odds of such a thing happening, they are astronomical. So, I now have rosary beads that were blessed by the Pope and John has a story that he can tell for a long time.

The other day, we were having one of those not so special days when I was startled by an email I received. It was from one of John’s cousins. He and his wife had moved some years ago to Dallas. We saw him every so often when they would come for a visit. Most of our contact however was by an occasional Skype call or by email. Evidently, his wife had fallen and hurt her back. While visiting various doctors and undergoing physical therapy, some tests revealed that she had stage 3 bone cancer. The email said that she had started chemo but had developed breathing problems. So much so that she was in the hospital on a respirator. A few days later, I got a text saying that she had passed away. Talk about a shock. Here you have an apparently healthy woman who went from enjoying a dig in her garden to passing away within a couple of months.

I am not writing this to be morbid but to put out the message that we must all expect the unexpected. My husband and I have learned over the years with his MS that things can change overnight so we had better enjoy the good things that we have right now. It is important that we take the time to always have a “the glass is half full” attitude. He has always said that “yes MS is tough, but there are a lot of people out there who have it a lot worse so let’s fight this thing and we will be okay.” (Of course with John, there were a few expletives thrown in.) You get the point however. There are a lot of folks out there who are dealing with a lot of problems. Don’t give into your problems and try to enjoy life to the fullest because you never know what tomorrow will bring.

This entry is really not going to be much about caregiving for an MS patient, but about another kind of caregiving, giving our grandchildren our time and our love.

This week has been very busy at my grandchildren’s school. It is known as Catholic Schools Week. During this week they have many activities to promote the school. An open house was held and there were many volunteers showing prospective parents around the school. There was also a day called a “Travelling Day” where each classroom had a theme to which the children got dressed up for and had presentations to show other students . This year my granddaughter’s class was Early American and my grandson’s class was Ancient Greece. Okay, now find costumes. Not!!!  Party city has now sent all of their costumes back to the warehouses. So, forget that. The Disney stores are out too.  My granddaughter wanted to be Pocahontas and my grandson’s class needed to make togas. The togas were my daughter’s idea. She told the teacher that the kids would need a pillow case for it. Not too bad. Now, to go find material for the Pocahontas costume. We used to have the Rag shop and Jo Ann fabrics around here, but unfortunately they have closed. Thank God for Wal-Mart. Their fabric department is pretty good and I found not only fabric, but notions, fringe etc. for the whole costume. In the shoe department there was also a pair of brown boots. My daughter cut out the fabric which was faux suede and made it look like a Indian Princess costume with glue gun and beads and fringe. It was great.

On Monday I went into the school and we cut the armholes and neck holes in the pillow cases for the togas. We then added the ribbon for sashes and made wreath head pieces.  The kids were so cute watching us cut out a costume. The boys were funny. They complained that it looked like a dress.  But all in all they were set.

Most of the time store bought costumes are easier and less time consuming. But, to see the smiles on children’s faces and watching them see how things are made, is a wonderful feeling. Caregving is just time and love if you can do it. We are all busy in our lives, But, sharing a few minutes of our love gives them a lifetime of memories.