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!

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.

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.