stress

I wish I could feel my foot, feet. My 13 year old daughter is having major issues, standard and beyond. She has been hospitalized twice and up until a couple of days ago has been argueing with me every day. EVERY DAY! I finally after almost six months cracked and put in ear plugs, put a blanket over my head and went to my room turned off the lights and cried for a good hour.

She essentially hates my boyfriend because he is trying to help maintain order in the house hold and she is used to bulldozing me or me forgeting groundings or just giving in if badgered long enough. Just because I say no doesn't mean her methods have changed it just means conflict.

She also tries her best to divide and seperate. At one point she had gotten so nasty she was saying stfu and don't talk to me. She is almost to the point of paranoia where if he is talking to anyone she thinks he is bad mouthing her. He does have a smart mouth, but I have made it clear if we are going to survive he has got to take the high road and be the adult.

Meanwhile I have relapsed, and relapsed and relapsed. I finally got some of my mood medication changed, but there are still times I will put in ear plugs and hum to myself or what ever if I have to.

She has been hospitalized twice and I swear if she doesn't give soon I'll be next. I can not take steroids so I have no options to calm my body down. I just need to go get a ccvsi work up. I want to have my life back. I want to be able to go exercise my butt off literally. lol. M.S. sux, but with my lesion I could be a paraplegic, there is a reason I am not, so I am going to take the answers being offered and try to make a go of it!

As the time creeps closer

I have been assigned my Tysabri treatment location site and it is quite close. I have procrastinated sending a simple income statement which then allows the drug company to pay in full for the next two years.

I guess I feel like I am playing Russian roulette. Chances of pml are 1 in 10,000 to 1in 100,000. Of the 200,000+ people taking it, I think the current number is 7 and in one gentleman it was caught and he had plasma exchange and he returned to work. I have got in touch with a guy I knew who got diagnosed in college while we were learning to become OT assistants and he is on this medication and raves about how good it is. 

He is also real positive about the drug we are all waiting on, the one that in studies seems to be freezing m.s. where it's at. If that is really the case, I can safely put away my fears of one day loosing control of my body as my largest lesion is c2.

I am also against all odds in love. I tried a service met one guy who I really want to hang with, but in growing my mafia on face book I met a man. I am absolutely crazy about him. I had lumped him in the married, gay or really, really far away category then he had surgery, major surgery. He has no parents to speak of and his closest relative was in Florida. I knew he could get  better medical care here and we could find a way to work together. We are poetry in motion. We just groove together like we had always been together.

We have so many similar interests that its almost humorous. I turned on my play list and there wasn't anything that he didn't enjoy as well.I will be able to help him rehab his arm and he has a calm aura, but he deals so appropriately with the kids. He will be working before we know it and he does well at what he does. He is a people person and he is a master bartender. He even got trained to twirl and flip the bottles. We will have to buy some cheap plastic ones to see if he can get his mojo back. I am smiling just talking about him. I am sure it will become a boring subject quickly, but I just didn't ever think I'd get lucky enough to have it really happen. I find myself not having to make any concessions or allowances about him because, it's just right. If this was my reason to be in Idaho, well Hallelujah. I am also being allowed to see my step daughter and have her come to stay with me. I love her as my own and so does everyone else.

So, he is starting to figure out my moods and my little signals. Today was a busy one. I washed some dishes, mopped, swept and whipped down kitchen cabinets. I also made a loaf of bread, it was a pre-set bread machine box and it was yummy country white. I did use my counter chair and mopped sitting for a while, but that's more for my back and my kitchen is pretty big. 

Off topic, I got another report about my awful hospital experience. I will talk about it one day, but it just makes me mad. I think I am going to go ahead and drop what I have at an attorney who has agreed to work with me and pick up my chart.They did substantiate that the facility was not handicapped accessible, so that's something. Now nobody saw a fall and I was just fighting to be pushed around. Jerks. Big Corporation....this is not over.

cool

I will be starting tysabri soon, well just as soon as I send a letter with my income. The medication is amazingly expensive and it will be covered for two years simply by a letter. I think fear has kept me procrastinating, but I caught up with a college friend who was diagnosed in college and he is on it and says it completely turned his life around.

So, one step closer to my next treatment, perhaps god put my friend in my life right now as I begin this treatment. He constantly amazes me how he is hurting yet, worries about how I feel. I am not making any predictions, we are helping each other and that's the way it should be.

So, before Annoymous leaves me a scathing letter, I am doing what I think is right. M.S. is B.S., but my new avenue of help isn't.

well the cold caught me

I should have known letting someone upset me like that generally means I am getting sick. I  woke up with my ear and throat hurting. I have no sense of taste because I tried to suck a zinc drop, gross! I officially do not care if I have a man in my life or not. The ones I have dealt with either just want sex or want a perfect woman. Dream on buddy. The best men in my life are really far away. Guess I can add to the saying the best ones are married, gay or really really far away.

I need hot soup, tylenol and more rest, but the minute I try to get those things the kids go apeshit because they think I am going to end back up in bed again and not get out. I have been going straight since November. I am not even allowed a sick day or two.

These kids are so angry, being thrown away like trash hurts everyone. Agreed he wasn't healthy for me, but could ya atleast say goodbye? 

I am filled with sadness, love and lives lost. I have got to find a way to get these kids to understand how fortunate they are. They have a mother who loves them all the time. Has made herself sick loving them and yet they direct all their anger at each other or me.

I know this is normal, but surely it will get better, It just has to.

A truthful letter

Dear Jerk,

  I must say I am really confused because it was in lighthearted spirit that I asked if you'd be my valentine. You said," sure I'll be your valentine." So, I looked for a card that was nice, but not "for lovers" after all we barely know each other, I just happen to love holidays. I found a box of heart shaped junior mints, a box of conversation hearts and then, the fatal mistake I called you a couple of times to ask about your dogs, because I thought they'd get a treat too.

I laughingly referred to the number of calls as stalkerish. And well that did it. A woman who tried to be your valentine and wanted to include your dogs. I pushed myself too hard on you, living 8 hours away, my daughter called you today and wanted to know why you were being mean to me, but just hung up. So, I told you no, I did call last night as we got cut off and I didn't want you to think I hung up on you. I am not poor mannered.

So, I say  " no I didn't call" I did last night to make sure you knew I didn't hang up and you have the nerve to say to me, see ya' in a month.I don't believe you'll see me in a month and I honestly do not feel like you want to see me in a month. 

Yes, you have hurt my feelings and today I cried. I want a great big hug from someone who loves me and knows that I am still jojo, I may have a disease, but I am still a loving big hearted creature that deserves to be treated nicely. I don't deserve the standard blow off. Or even the quick um I gotta go in the store real quick bull shit. I am a beautiful woman and you just missed out on one of the best opportunities life had handed you.

I didn't want you to be a daddy to my children and I didn't want you to be my caretaker. I wanted you to be my friend. Maybe you have enough friends and do not need anymore. Instead you have made me cry and I have made myself cry by knowing that it hurt my feelings. I don't need a man to validate me. I just wanted to make some friends. I now know that was not the way. I will do adult things because I need to not to husband hunt. I certainly do not want another of those, but I can not help but believe in true love. I have seen too many examples. It exists and I do deserve it.

Maybe, one day the right person will come along, but for you buddy.... don't waste your time. You know you aren't interested so go find someone who meets your standards because you no longer meet mine.                                                                                         Sincerely, 

                                                                                                                               The Amazing JOJO

I take it back

The last man who I thought was man enough to possibly be in my life, just bugged out because I asked him to be my valentine. So, he says he'll keep my number, but oh come on! Should I just not tell people that I have m.s.? How does one date like this? I hope he finds what he is looking for, but just asking him to be my valentine, guess he has some relationship issues. I refuse to let this get me down. Love is there somewhere, waiting on me! Dayum all I wanted was a friend or two so I could do adult things, well moving on, NOT gonna slow this chick down.

the flip side

The kids have brought home the mega germ and I have been working my rear- end off putting my house together, so the result is shaky hands and a delay of brain for a second or two. I am also doing the drunken stagger, this is my off week. I have found that I haven't found a middle, but I am kinda doing good one week and crashing the next. So, unpacking my bedroom, hanging all my clothes, sorting and shopping two days straight has caught up with me and my bank account. I did get some amazing deals. A down coat for 17$ if my daughter will not wear it I so totally will. I have a long one but this is hip legnth.

I also made my daughter take pictures of me, she's a good photographer and she and her friend did an awesome job, I edited, so we'll see. I had an online friend check it out and give me their opinion, so I took down the monroe looking shot. And yes people, I have lost weight and so I rewarded myself with three pair of jeans in a smaller size. May not mean anything as we all know it's the maker, but they look good and I feel sexy.

So, I am so ms'y today, but I brought it on my self gotta find that middle ground!

M.S. b.s.

I have created this blog to have a spot to bitch about my disease, Multiple Sclerosis. I have known for sure I have this disease since May 09, but the process started in Sept. 07. I simply had three fingers on my left hand go mostly numb. I have other pre-existing arthritic issues, so we assumed that it was entrapment. Well I had a call back to get my brain scanned asap! We had started with my cervical spine. I went at midnight and found out I was facing m.s. or tumors in my spinal cord.

As to date, I have been on copaxone, and re-bif. The copaxone gave me every symptom I didn't have and it got so bad at one point I was bed bound. I was also on about 15 medications. I pulled myself of almost all of them and nearly went crazy as I didn't sleep one wink for 5 straight days. I was delusional and my doctor had me admitted to a psych ward. I spent the weekend there with them scared because they took a picture before I documented it and I noted it on the paperwork.

I started re-bif in June of 09 and made it until September. It was awful. I was clinically depressed and the shots caused so much pain. It was like being steamrolled every other day and I was a limp noodle between. I once again was bed bound.

In November my in-laws came in and handed me an eviction notice that I had to go to rehab or I was to be evicted. I really didn't have much choice as my pain doctor fired me and I was going to have to wean somewhere. I spent 9 out of 14 days not sleeping due to neuraglia pains, my doctor was not going to do anything about it. I finally dismissed him and got the most amazing doctor. I have pain medication with out side effects! The pain cycle is broken.... praise God. I am alive again for the first time in 10 years. I hurt, but its true pain and the doctor knows it as the medication stops any pain medication desires. I am not pain free. I have limitations to what I can do, but I also only have so much energy due to the m.s.

We were evicted in December and we moved one week before christmas. It was an outpouring of help from wonderful people. I was truly blessed this holiday season. One woman helped me pack, another group finished it up, a group of men moved me in two hours flat and the woman who helped me pack kept the kids and then she and another couple came and helped me put the rest of  the house together enough that it was a home. I am still unpacking, but it was truly amazing.

I have just finished trying to find local men through match.com, I have one catch and he's agreed to be my valentine. He will not be in Boise for another month, but I think that is giving us time to get to know each other in advance. I guess it's cool for him too as not often you move and have a woman waiting on you.

So, I am single parenting with three children and M.S. Its hard, but not as hard as I thought it would be. I am going to have my blood drawn this week and then I will start tysabri. I have been scared of it because of the chance of pml, but I know I am going to be fine. Apparently God must have known how strong of a woman I am carrying a heavy load. I am trying to find a middle ground, as for now I have been kinda working at a go hard one week then rest the next. That's not quite the middle ground I need, but this is my home and I want it to be amazing , like me. I want it to look nice.

I have found there is no easier way to run off a potential suitor than to say "I have M.S." I see that and the kids as a filter, if they still want to meet me in spite of that, you are worth my time. Well, that begins my m.s.b.s. journal, I like to keep the other one for other stuff and I know what few readers I have do not want to hear about it all the time, so this is for me and if it interests you, feel free to read.