It has been a long time since I have been on here to post a new blog. I apologize if by chance you do happen to follow me. I am just as bad with my Twitter account. I need to get better about it.
Last week, I found myself in a bit of a funk and as usual cried most of the evening on Thursday after work. I was having worse symptoms than usual and everything seemed to overwhelm me. I made a mistake leaving a message for my new nurse about the fact my drug would be in on the 11th...I paused and lost all train of thought. I regained it and left my number. I called Jeff to say I had ordered it and needed some support. He said it is ok, don't worry everyone does it. In a sad, tearful tone I said it...Something I have never said to him, myself or even my closest friends. I said "you have no idea what I have lost". I was not meaning it mean just a statement that seemed to echo my feelings. You see no one ever knows what the person who they may run into on the street has lost or that of even our closest friends. I see the same faces everyday in my life and none of them know my experience and what I have lost not to MS but in general. Life is just that way. One person really thinks they have lost so much but then when they look at another person may have lost way more. My point is don't get all down in mulley graws...Yes, I said mulley graws..Just get back up and figure out a way and get through it, move on or whatever you need to do. Because, there is probably another person out there who has it way worse and you may encounter them today. If you do, then by all means pay it forward or simply listen and give that comforting smile or tone in your voice. You just may change a life and it just may be your life that changes.
Live on, Grieve if you have to but you must keep going. No one is going to take that journey for you and never ever give up.
Monday, December 10, 2012
Thursday, May 10, 2012
Jeff...I love you.
Well, here I sit wondering what to say or blog about. I should write all my ideas down that wind around in my head as I try to fall asleep. My brain never stops. I always tell Jeff it is like a hamster in a wheel always spining around. I always mull over the days events or even past events. I sometimes almost obsess about what you could have said differently. You know we all do that I just do it to an excess. I am very lucky that I do fall asleep pretty easily after awhile.
One thing I keep going back over is what could I have done differently with my life. I can't see what should be any different. The course it took was the right course to prepare me for the rest of my life. I think with everything that has happened in my life I should write a book. I always say that but isn't it true everyone has their fair share of things. Had I gone on to college after high school would I have not gotten married so young at 19? If I had done that, I would have never lived 3 years in Japan. I would have never known my ex husband. Who always was not so bad. He and I just changed and went on different paths. So since I didn't go to college, I got married and moved away. When we returned to the states, since he was in the Air Force, that brought us to Whiteman Air Force Base in Missouri. I would have never came here on my own and frankly I wouldn't be as happy as I am today. I would have never met Jeff. If his first wife didn't make him get off active duty and return to Missouri we would have never met. Our lives have been on similar courses for years. If my heart had not been broken so badly by an ex boyfriend prior to meeting Jeff, I would have never gone online to date...that is just not something I would do. I just figured what the hell, all the ones I met in bars and at my job turned out to be duds and I didn't know them either just like online so there was no difference. I decided that I could do better and I did. Not once since meeting Jeff have I ever looked back and missed my old life. I feel as if that was someone else's life. Of course I have memories that will last forever but that is just what they are, memories. What I have is real. One thing we have always agreed on as a couple is that we don't keep anything from each other. I knew going into my relationship with Jeff that he and his ex were just separated. He told me that upfront. His divorce came very quick and we have been together ever since. We told each other the truth and that is what keeps us going today. I know at the end of the day he has got my back and I have his. You could do just about anything but if you lie to me you better hope it was worth it. lol
Those of you that know me well know that is the truth.
Tomorrow we will have been married for 9 years and in July we will have been together 10 years. The day he proposed he asked me if I really wanted this and he held the little box up while we sat at the light in Sedalia. I said yes, I do. Why? I responded because being with you is the only thing in my life that makes sense or has ever made since. Not sure why we waited 3 months to get engaged and 7 months more to get married. I should have married him right away and what would he say to all that....DITTO my love...Ditto!
One thing I keep going back over is what could I have done differently with my life. I can't see what should be any different. The course it took was the right course to prepare me for the rest of my life. I think with everything that has happened in my life I should write a book. I always say that but isn't it true everyone has their fair share of things. Had I gone on to college after high school would I have not gotten married so young at 19? If I had done that, I would have never lived 3 years in Japan. I would have never known my ex husband. Who always was not so bad. He and I just changed and went on different paths. So since I didn't go to college, I got married and moved away. When we returned to the states, since he was in the Air Force, that brought us to Whiteman Air Force Base in Missouri. I would have never came here on my own and frankly I wouldn't be as happy as I am today. I would have never met Jeff. If his first wife didn't make him get off active duty and return to Missouri we would have never met. Our lives have been on similar courses for years. If my heart had not been broken so badly by an ex boyfriend prior to meeting Jeff, I would have never gone online to date...that is just not something I would do. I just figured what the hell, all the ones I met in bars and at my job turned out to be duds and I didn't know them either just like online so there was no difference. I decided that I could do better and I did. Not once since meeting Jeff have I ever looked back and missed my old life. I feel as if that was someone else's life. Of course I have memories that will last forever but that is just what they are, memories. What I have is real. One thing we have always agreed on as a couple is that we don't keep anything from each other. I knew going into my relationship with Jeff that he and his ex were just separated. He told me that upfront. His divorce came very quick and we have been together ever since. We told each other the truth and that is what keeps us going today. I know at the end of the day he has got my back and I have his. You could do just about anything but if you lie to me you better hope it was worth it. lol
Those of you that know me well know that is the truth.
Tomorrow we will have been married for 9 years and in July we will have been together 10 years. The day he proposed he asked me if I really wanted this and he held the little box up while we sat at the light in Sedalia. I said yes, I do. Why? I responded because being with you is the only thing in my life that makes sense or has ever made since. Not sure why we waited 3 months to get engaged and 7 months more to get married. I should have married him right away and what would he say to all that....DITTO my love...Ditto!
Wednesday, May 9, 2012
Disability - Yeah, RIGHT!
I thought by being open and telling my story here and on Facebook dealing with MS would help someone. Well, it has helped me and that is all that matters but it seems to some who have read my blog that I am looking and setting myself up to take disability! Really, people get over yourselves! You think you know everything? Well, there is something freeing about that unfriending button on Facebook...Anyway, I work everyday despite what I feel on a daily basis. If any one reading this would like to walk a day in my shoes please feel free.
Ok I wrote that on a very angry day where I was told by a friend that other people we knew were saying those things. I have since deleted them on Facebook and that felt good. It took me a few days to get back into blogging. People can just take the wind out of your sails.
I have been on my MS drug or my DMD (disease modifying drug) for almost 28 days. I just ordered next 28 day supply. My dosage went up last week and with the new box it will go up again. So far so good no real issues. I feel slightly better even though it isn't designed to help or cure my symptoms. It just slows everything down. I also went on a new drug last week for my fatigue. My neuro said it helps most people with MS. So far it has helped me a great deal. I don't feel like sleeping every minute of the day and that is a plus. I get up more easily and seem to nap less. Although the first day I took it I slept in my office during my lunch hour. I am on my lunch hour now and don't feel like laying down...lol
I feel a slight cold coming on and that concerns me since illness and fever can bring on a relapse. I told Jeff this morning on the drive in, despite the pain and numbness I am feeling more like the old me...the like 10 years ago me. That felt good to say. We now drive in together now since his office moved over to the KS side of the KC Metro area, which helps our gas bill as well as gives me less stress...I do miss driving though. Until I met Jeff I drove every where....I drove my ex husband and ex boyfriend around all the time. I got used to that so sometimes I say let me drive...he says no as usual. LOL
So we got into a fender bender yesterday coming into work. We were rearended by a lady in her son's car. It seemed so fishy and I am glad Jeff called the police right away. She wanted or should I said begged Jeff to drive away before the police got there. Her son pleaded on the phone saying he would pay for it. I am so glad he stood his ground. She ended up with 2 tickets and I am sure her son's insurance won't be impressed with this at all. We are letting our insurance handle it and then they can go after their insurance later. So who knows when the Explorer will be done. I am afraid since it is so old they may say no fix, and give us its value which is the value they perceive. We percieve its value to be much higher since the dang thing is paid for and we don't want to have to replace it with a car that we would need a car payment to get...That old Explorer has seen alot. Traveling cross country several times...bringing Jeff home to me every weekend when he got back from deployment and was in Medical Hold in 2 states...as well as bringing him home on down times before deployment. It brought us through the worse ice storm either of us had ever seen when coming home after Mama's passing in January of 2007. It got us home from Vegas many many times. It also carried our girl Sandy home for the first time. What a good dog she was. Miss her every day. Losing her, Mouse and Minnie nearly killed me. I know pets get old and must leave us but why does it have to hurt so much.
On to other things. My brother was in the hospital. My sister in law called me and kept me informed. I talked to him in the hospital which eased my mind immensely. I can not describe what it felt like to have your sibling in the hospital and there was nothing I could do because I was here and he was there. Losing my brother is not something I ever want to face til we are old and gray in a nursing home, giving each other hell. That is our ongoing joke...we will be in a nursing home together and he will say remember that time, a few years after mama passed and we were getting rid of her things and we found her teeth...LOL I was as scared as I ever was, just knew the old woman left it there to scare us...LOL no she didn't but I am sure she tries to haunt us whenever she gets the chance.
Anyway, many people don't know that me and my brother are close you don't always see it or hear it but he has done so much for me when I was growing up. See our parents were sick alot. We got used to that. Mama especially and when she would come home after being in the hospital for a long time it fell to me and brother to keep things running until she was back up and running. We did this even before she went into the hospital and during her stay. Her stays were pretty long and you never got the exact same version of mama back as you saw going in the hospital. I learned to run the phones for the business when I was not in school and learned everything about that. I did his book keeping from a very young age and took all calls when I was home. I learned to read maps and how to talk to customers. Junior went and helped on the truck. It was a family affair and it is and was what kept our family afloat. Together we did it. During this time I didn't get to do much cause I had to answer the phones especially if mama worked during the summer. When I was a pre teen Junior took me everywhere. He was working and either in high school or just got out. We were always together. I wouldn't have gotten out if it were not for him. We got kicked out of the house one time together cause I spoke up to Daddy and he kicked us out...we went back of course...Daddy was glad to see it. I think we may have called his bluff. Thing was where was I going to go? Same for him. I though oh I could stay at my boyfriend's house he shared with a bunch of guys oh yeah that would have been good.
Anyway, my hour is just about up...I will close this blog with this....If you never learn one thing in life, learn that you can do anything, be anything and most of all...No matter what happens it all will be ok.
Ok I wrote that on a very angry day where I was told by a friend that other people we knew were saying those things. I have since deleted them on Facebook and that felt good. It took me a few days to get back into blogging. People can just take the wind out of your sails.
I have been on my MS drug or my DMD (disease modifying drug) for almost 28 days. I just ordered next 28 day supply. My dosage went up last week and with the new box it will go up again. So far so good no real issues. I feel slightly better even though it isn't designed to help or cure my symptoms. It just slows everything down. I also went on a new drug last week for my fatigue. My neuro said it helps most people with MS. So far it has helped me a great deal. I don't feel like sleeping every minute of the day and that is a plus. I get up more easily and seem to nap less. Although the first day I took it I slept in my office during my lunch hour. I am on my lunch hour now and don't feel like laying down...lol
I feel a slight cold coming on and that concerns me since illness and fever can bring on a relapse. I told Jeff this morning on the drive in, despite the pain and numbness I am feeling more like the old me...the like 10 years ago me. That felt good to say. We now drive in together now since his office moved over to the KS side of the KC Metro area, which helps our gas bill as well as gives me less stress...I do miss driving though. Until I met Jeff I drove every where....I drove my ex husband and ex boyfriend around all the time. I got used to that so sometimes I say let me drive...he says no as usual. LOL
So we got into a fender bender yesterday coming into work. We were rearended by a lady in her son's car. It seemed so fishy and I am glad Jeff called the police right away. She wanted or should I said begged Jeff to drive away before the police got there. Her son pleaded on the phone saying he would pay for it. I am so glad he stood his ground. She ended up with 2 tickets and I am sure her son's insurance won't be impressed with this at all. We are letting our insurance handle it and then they can go after their insurance later. So who knows when the Explorer will be done. I am afraid since it is so old they may say no fix, and give us its value which is the value they perceive. We percieve its value to be much higher since the dang thing is paid for and we don't want to have to replace it with a car that we would need a car payment to get...That old Explorer has seen alot. Traveling cross country several times...bringing Jeff home to me every weekend when he got back from deployment and was in Medical Hold in 2 states...as well as bringing him home on down times before deployment. It brought us through the worse ice storm either of us had ever seen when coming home after Mama's passing in January of 2007. It got us home from Vegas many many times. It also carried our girl Sandy home for the first time. What a good dog she was. Miss her every day. Losing her, Mouse and Minnie nearly killed me. I know pets get old and must leave us but why does it have to hurt so much.
On to other things. My brother was in the hospital. My sister in law called me and kept me informed. I talked to him in the hospital which eased my mind immensely. I can not describe what it felt like to have your sibling in the hospital and there was nothing I could do because I was here and he was there. Losing my brother is not something I ever want to face til we are old and gray in a nursing home, giving each other hell. That is our ongoing joke...we will be in a nursing home together and he will say remember that time, a few years after mama passed and we were getting rid of her things and we found her teeth...LOL I was as scared as I ever was, just knew the old woman left it there to scare us...LOL no she didn't but I am sure she tries to haunt us whenever she gets the chance.
Anyway, many people don't know that me and my brother are close you don't always see it or hear it but he has done so much for me when I was growing up. See our parents were sick alot. We got used to that. Mama especially and when she would come home after being in the hospital for a long time it fell to me and brother to keep things running until she was back up and running. We did this even before she went into the hospital and during her stay. Her stays were pretty long and you never got the exact same version of mama back as you saw going in the hospital. I learned to run the phones for the business when I was not in school and learned everything about that. I did his book keeping from a very young age and took all calls when I was home. I learned to read maps and how to talk to customers. Junior went and helped on the truck. It was a family affair and it is and was what kept our family afloat. Together we did it. During this time I didn't get to do much cause I had to answer the phones especially if mama worked during the summer. When I was a pre teen Junior took me everywhere. He was working and either in high school or just got out. We were always together. I wouldn't have gotten out if it were not for him. We got kicked out of the house one time together cause I spoke up to Daddy and he kicked us out...we went back of course...Daddy was glad to see it. I think we may have called his bluff. Thing was where was I going to go? Same for him. I though oh I could stay at my boyfriend's house he shared with a bunch of guys oh yeah that would have been good.
Anyway, my hour is just about up...I will close this blog with this....If you never learn one thing in life, learn that you can do anything, be anything and most of all...No matter what happens it all will be ok.
Wednesday, April 25, 2012
Rebif Shots
Rebif shots that sounds like I have been to a bar drinking some new alcoholic beverage!! Not really but I wish I were and that I could. Rebif is the current drug I am on for MS. I take 3 shots a week, at least 48 hours apart. The side effects are crazy flu symptoms. I get them almost immediately and go straight to bed. 20 plus years ago there were no drugs for MS. These drugs now are disease modifying drugs or DMD's. Rebif is touted as one of the only drugs that slows the progression of MS, gives you less and shorter relapse and longer remissions. Remissions average 21.5 months on Rebif. The other side of Rebif is that it keeps most patients working longer an average of 10 more years. I am hoping for much longer but we shall see. I have read stories of those who work 20 years. I hope to. I also take a drug that is an antidepressant that also works on chronic nerve pain and lets me work and get around with less pain. If I didn't take it I would be in so much pain that moving would be hard. It helps me be able to walk and such without wincing in pain. My hands and feet stay numb, with constant needles and pins pain. It is more like ice pick pains. They are more tolerable on this drug so I can get around better.
It seems in this day both spouses have to work to make ends meet. I know many people who barely squeak by with both working. I have been blessed that I have a good job that helps us squeak by. We have a lot of bills. I am sure one day I will have them paid down or off but until then it is off to work I go everyday. My insurance at my job is very good and that is another reason to keep working. I am not sure we could afford all my drugs without me working or having insurance. I am lucky because this is the first job I have ever had that offered me insurance. I had little policy on my own before moving to be with Jeff and it didn't cover a thing...I always had doctor bills. Now at least I can manage them somewhat.
When you are faced with a chronic disease or illness, it is scary thinking how are we going to manage this financially? I struggled with this. I cried a many a night since September wondering how we were going to make it. It is scary. I don't want to lose our home and sometimes I am afraid that just could happen if I were to not be able to work. So, I push on. Believe me I would love not to work and take better care of myself in the process. Since I work, I must go to bed earlier than the average bear who has MS. I sleep all weekend at least til 11 am and then I may nap in the afternoon and still go to bed by 8 pm. I have to make sure I am eating right in the process as well. I am hoping to start walking and maybe running some for exercise as well as some strength training. I have to avoid getting hot or overheated but I think I can do it.
I read lots of other blogs and posts on MS Facebook pages and there are some who have more issues than I do that can't walk or have to use walker etc. I am very lucky to be able to get up in the hospital after being temporarily paralyzed for 2 hours in the hospital in Florida. I count my blessing everyday. I don't know if the next relapse or flare up will leave me in wheelchair til it passes but I hold out hope and I am very positive that I will not have to much disability after the next relapse. It is still very scary and I am not even sure if scary is the right word to use. I guess maybe I worry too much. Either way it is almost one of the toughest challenges I have ever faced. I thought the challenge of having children and the challenge of losing them would be my toughest challenges, boy was I wrong. I had friends that got divorced around the time I did and they said their divorces were the toughest challenge and it still is. I am not sure why MS chose me or why I developed it. So many theories are out there as to why people get MS, and none of them ring to true to me. I guess it is like the old saying goes, God doesn't give you more than you can handle. I don't think God gave this me, I believe it was fate or the luck of cards or whatever. I just don't want to wake up one day and say to myself why didn't I do this or that...so I have to get what I can out of life while I still can...Anyway, thanks for reading...have a super day and week!
It seems in this day both spouses have to work to make ends meet. I know many people who barely squeak by with both working. I have been blessed that I have a good job that helps us squeak by. We have a lot of bills. I am sure one day I will have them paid down or off but until then it is off to work I go everyday. My insurance at my job is very good and that is another reason to keep working. I am not sure we could afford all my drugs without me working or having insurance. I am lucky because this is the first job I have ever had that offered me insurance. I had little policy on my own before moving to be with Jeff and it didn't cover a thing...I always had doctor bills. Now at least I can manage them somewhat.
When you are faced with a chronic disease or illness, it is scary thinking how are we going to manage this financially? I struggled with this. I cried a many a night since September wondering how we were going to make it. It is scary. I don't want to lose our home and sometimes I am afraid that just could happen if I were to not be able to work. So, I push on. Believe me I would love not to work and take better care of myself in the process. Since I work, I must go to bed earlier than the average bear who has MS. I sleep all weekend at least til 11 am and then I may nap in the afternoon and still go to bed by 8 pm. I have to make sure I am eating right in the process as well. I am hoping to start walking and maybe running some for exercise as well as some strength training. I have to avoid getting hot or overheated but I think I can do it.
I read lots of other blogs and posts on MS Facebook pages and there are some who have more issues than I do that can't walk or have to use walker etc. I am very lucky to be able to get up in the hospital after being temporarily paralyzed for 2 hours in the hospital in Florida. I count my blessing everyday. I don't know if the next relapse or flare up will leave me in wheelchair til it passes but I hold out hope and I am very positive that I will not have to much disability after the next relapse. It is still very scary and I am not even sure if scary is the right word to use. I guess maybe I worry too much. Either way it is almost one of the toughest challenges I have ever faced. I thought the challenge of having children and the challenge of losing them would be my toughest challenges, boy was I wrong. I had friends that got divorced around the time I did and they said their divorces were the toughest challenge and it still is. I am not sure why MS chose me or why I developed it. So many theories are out there as to why people get MS, and none of them ring to true to me. I guess it is like the old saying goes, God doesn't give you more than you can handle. I don't think God gave this me, I believe it was fate or the luck of cards or whatever. I just don't want to wake up one day and say to myself why didn't I do this or that...so I have to get what I can out of life while I still can...Anyway, thanks for reading...have a super day and week!
Tuesday, April 24, 2012
Day by Day
I decided to write in my journal today during my lunch hour. I have a little bit on my mind so I figured it couldn't hurt to blog. I think it has finally hit me now that I have MS. It was sort of like a dream or a surreal thing. It has been surreal for a while now. I am ok with having this disease. I wouldn't have chose it but everyone has some kind of burden to bear. I keep thinking of my mother and her courage during her breast cancer surgeries and treatment. Sure, she had her days but she went finally for the chemo and radiation. Radiation was an every day thing for her for over 6 weeks. I can not imagine how she must have felt so I go on. If she could do that I can do this.
Two very dear friends told me today that they didn't know how I did this day and day out. They both said they were not so sure they could do it. I for one think they could. They are also very strong women. I told both of them that I just take it day by day. Sometimes, I have good and sometimes I have bad. One thing I didn't add to my conversations with them was at least I have days...the alternative would be to curl and not take treatment and end it all. That ain't going to happen for sure.
This journey has taught me some pretty good examples of people. I have been shunned by people who have never would have shunned me before. Imagine here you are in need of comfort etc and the people you expect to be there for you are not. I can't tell you how much that breaks my heart. On the other side I have reconnected with many old friends because of this disease and made some new ones. It is so true you don't realize these things about these people until they are tested. You were there for them why couldn't they be there for you.
Sometimes, my disease is very lonely. I find myself shying away from people because of it. I mean after being burned a few times now since I alerted people in person and via Facebook, the people who criticized me for it aren't very supportive either. I just wanted people to know the real story from me not from someone else. I also was very candid and said I didn't care if they told anyone. For some reason everyone else in my life cared about that more than me. Who does it hurt if they know? Not me. I wanted people to know, I was not going to be any different because of it. I was still going to be the same straight forward Marlo I have always been. I just never realized how many people wouldn't be there for me. No emails, no messages, no phone calls...just dead silence from some regardless who they were. Others who knew me 30 plus years ago were so supportive..yes I mean my high school classmates, who have been wonderful. Some I started kindergarten with have bent over backwards to comfort me and support me. I love you guys. Plus all my new friends who support me as well. Not to mention the whole MS community who have done nothing but support me, teach me and be that shoulder when I needed it.
Then there is Jeff. My wonderful husband, who helps me more than he realizes every day. I am not sure where I would be if he was not in my life. Thank goodness, I had the good sense to pick myself up the last time my heart was broken and jump back in again. Jeff is truly the best thing that ever happened to me. I have a wonderful life with him and I feel so blessed.
Two very dear friends told me today that they didn't know how I did this day and day out. They both said they were not so sure they could do it. I for one think they could. They are also very strong women. I told both of them that I just take it day by day. Sometimes, I have good and sometimes I have bad. One thing I didn't add to my conversations with them was at least I have days...the alternative would be to curl and not take treatment and end it all. That ain't going to happen for sure.
This journey has taught me some pretty good examples of people. I have been shunned by people who have never would have shunned me before. Imagine here you are in need of comfort etc and the people you expect to be there for you are not. I can't tell you how much that breaks my heart. On the other side I have reconnected with many old friends because of this disease and made some new ones. It is so true you don't realize these things about these people until they are tested. You were there for them why couldn't they be there for you.
Sometimes, my disease is very lonely. I find myself shying away from people because of it. I mean after being burned a few times now since I alerted people in person and via Facebook, the people who criticized me for it aren't very supportive either. I just wanted people to know the real story from me not from someone else. I also was very candid and said I didn't care if they told anyone. For some reason everyone else in my life cared about that more than me. Who does it hurt if they know? Not me. I wanted people to know, I was not going to be any different because of it. I was still going to be the same straight forward Marlo I have always been. I just never realized how many people wouldn't be there for me. No emails, no messages, no phone calls...just dead silence from some regardless who they were. Others who knew me 30 plus years ago were so supportive..yes I mean my high school classmates, who have been wonderful. Some I started kindergarten with have bent over backwards to comfort me and support me. I love you guys. Plus all my new friends who support me as well. Not to mention the whole MS community who have done nothing but support me, teach me and be that shoulder when I needed it.
Then there is Jeff. My wonderful husband, who helps me more than he realizes every day. I am not sure where I would be if he was not in my life. Thank goodness, I had the good sense to pick myself up the last time my heart was broken and jump back in again. Jeff is truly the best thing that ever happened to me. I have a wonderful life with him and I feel so blessed.
Saturday, April 14, 2012
Trying to get back to posting....
I haven't posted to this blog in weeks. I had intended to keep it updated every day..yeah right! I am truly at a time in my life where I am at a loss of words. I am always the one with words in any situation. I find good in everything and always find and point out that silver lining. I have always believed everything will be alright...no matter what that was my life motto from childhood to adulthood. Everything may not be great but it does get better and will be alright. When one of my parents was sick or hospitalized when we were younger, it was like horrible but Jr. and I always knew it would be alright. We knew we always had each other no matter what happened to mama or daddy. For the first time in my life, I can't say that about myself. I want to believe it as I sit here typing this tonight but I am scared. I can't bring myself to be there for friends that truly need "Marlo" right now because of my own pain and problems. I have always been the problem solver. I have found I avoid conversations or phone call or even texts. Close friends seem so far away anymore. I just can't pick up and say oh it is ok and I am alright to anyone right now. I am the scaredest I have ever been in my life. Friday as I left work I had hit the wall of overwhelming doubt that follows me each day. I kept it together than cried in front of my boss. I hate to cry. I wish I didn't. I just want this to be a bad dream. I knew 20 something years ago that doctor was right and this day would come. I am glad it took this long to get this bad. I wish MS was not in my vocabulary or in my body but it is. The sharp pains and numbness overwhelm me. Sometimes I can't even walk. I remember the feelings or lack of feelings I had in my body in the resort room in Florida in October before I collapsed. I remember saying to Jeff, please tell my daddy I love him and my brother and the kids that I love them and uttering the words either of us never thought either of us ever would..."Sweetie, I am going and if I don't come back I love you and it has been wonderful..." then I was out. Those words still haunt me. I felt my brain and body going but I also felt this damn mad mean streak flow through my body. I felt a nudge from someone who pushed me to wake back up and when I did I was as mean and angry as an old wet hen or one Martha Chandler...I said words that would make a sailor blush. I hate how mean I was but I channeled my inner Mama as Jeff would say and she got me through. I can remember laying on that bed in the ER being stuck non stop and not feeling it at all. My body was a jigsaw puzzle of pieces that I could and couldn't feel. I felt like I had no presence in the world. There was no me...I felt like a stick figure on a flat blank piece of paper who had no arms and couldn't walk. i had lost it all. I remember in the ambulance as they closed the doors looking out of my swollen squinty eyes thinking I thought I had more time. I didn't think it would hit me this soon...how the hell...did I get here. What did I do? Where did the time go? Maybe I should have, would have, could have....not on your life did I think I would have regrets...I walked away from deep loves of my life and never regretted one minute of time or loss...Marlo never regrets anything. I am strong...I am a Chandler...I don't give up. We are not made to. They raised me to do it no matter how awful I felt or how much it hurt. So somewhere between the ER and the room they assigned me upstairs in the hospital, I found her again. When the attending neurologist said can you walk...I not only said yes...I said hell fucking yes I can. Jeff scolded me...sweetie...he said. I just gave him the look...my vocabulary got cleaner as the week wore on. I never said I shared a room with a young mother and her baby. Her husband stayed with her every night. they were there for the first 4 days of my incaceration...They were deaf and could not speak as well. He snored and the baby never cried. We sat listening to doctors and social workers try to communicate with them. People came in and out of our room and no one even posted anythign saying they couldn't hear so visitors or others who didn't know would. On her last day we realized why she was there. She had had the baby and was not well. She was in there because she could possibly have heart failure. I all of a sudden didn't feel so sorry for myself. How scary that must have been. so as I remember their scared faces and hear their frustration of not being understood, I see my life isn't so bad. I will take the good with the bad and remember who I am and feel blessed to have the strength I inherited and earned over the years. EVERY thing does happen for a reason and one day I will know why my mother passed a week after my husband returned from Iraq and what lesson in life I am really trying to learn here and why it feels so lonely out here in MS land....love to all my peeps and family...thank you for loving me.
Thursday, February 16, 2012
Wow..
Wow..well that says alot in itself. The reader is not sure what the exclamation is for but the writer has more in store for the reader. Today it means what would my life be like if it turned out the way I thought it would 24 years ago this coming December. I would have delivered my first child. Yeah, there it is in a nutshell. I like to think it was a red headed boy named Tommy. Yep, Tommy would be 24 in December if he made it past the 4th month. How one event can change the path of your life forever. I miss Tommy not for the reasons you might think. I miss being a mother. I have been a wife and I am pretty good at that. I have no children so I can not call myself a mother. I have nothing to base it on. I don't regret anything. Losing Tommy was part of God's plan for me. Too bad it has taken me 24 years to know that and understand it. I was not meant to be anyone's mother. I was meant to be exactly what I am right now...and that is simply Marlo. I will always be someone's aunt, sister, daughter or friend but not someone's mother which at this day and age is alright with me. Don't get me wrong every year I figure out their ages and think of who they might have been. 24, 23, 19 and 17 years old respectively. I still am so shocked by their ages every year. Wow...my life is still wonderful without them but just every once in awhile I let my mind wander to what might have been...I don't want to still be with my first husband, their father and believe if we had had all 4 of them we would probably still be together struggling as usual. Times would be happy but it is not the path we were meant to be on. I am meant to be exactly where I am and he where he is. My life has gone on in spite of the pain. I didn't wallow to long down there in that emotion. You grieve and you move on. Life keeps going. You stop for a minute to feel it and let yourself live in those moments and you remember but you have got to get back up and face life head on. I never could quite come up with names for the others in my mind. There is no funeral for miscarriages. There is only the memories of what might of been. Wow...what a ride the last 24 years have been. I wouldn't trade a thing. I would rather have been a mother for a few months 4 times in my life than not to have ever been one.
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