WHY?????????????????

My eyes are getting better but the medicine is making me feel ill and tired all the time. I went to the theatre to help with lights and after only hanging four instruments was ready to go to bed! I just have no stamina. I fear I am gaining weight and my face is bloated. I also think my blood sugars are bad but can’t get a doctor to write up a blood work script. Yet I don’t feel like all is bad with me. I feel I should not complain, and I am a whining bitty.

Yesterday at five PM there was a terrible accident near our house. It was next to the house that is abutted to our back yard. A car was struck by another and a ten year old girl died. Her fourteen year old brother is in critical condition. Her mother and another 14 year old were also in the car but apparently OK. A man had left his Mercedes running in the driveway when he went back into his house to get keys fort a second car. When he came out a thief was taking his car. So he got into the second car and chased the thief while calling the police. The high chase pursuit led to the car colliding with the mom and children who had nothing to do with either of them. It was a block away from a school so she was probably picking them up after work. I just hate people. I mean what the heck was that man thinking of? You do not go chasing a stolen car! You call the police and let them handle it! That man is not being charged with anything which really pisses me off. He should be charged with reckless endangerment and disregard for human life. I just hope he knows that he is the reason that girl is dead today. It was a stupid car. A thing, an object, something that can be replaced. The girl was a precious gift from God that will never ever be replaced. I just hope he realizes that.

Eyes getting better...

Well the steroids are kicking in finally after one week of taking them. My wyes are still double but so close that I can now drive! This is great because Greg worked at home this weekend and I went to my parent’s house with the children. My niece and nephew were staying for the weekend and so I took advantage and was able to get the cousins together. I can drive during the day but not so at night yet and not on major highways.

Sunday I went to church with Lara as Greg was working and then to her CCD class. She had no crying when I left as the teachers got her involved right away and I took off as soon as I could. She was mad though when I picked her up that I had left her there. Later on we had fire safety behind borough hall. I was exhausted and went to bed early while Greg made hot dogs.

Monday I went back to my mom and dad’s house for more cousin time. This is one of my brother’s children that live two hours north of us so we rarely go there. Having them nearer was great, but makes me wish we hadn’t moved so far south of everyone. All the relatives around me here are his and I do not get along with them very well. One aunt refuses to write my children’s name right on their birthday cards! They have hyphenated names and all they put down is Greg’s name! The other writes in my name but misspells it so badly it is pathetic. I mean after six years why can’t they get the name right?

So now I can see better because of the drugs, but it comes with a price. I have to take extra calcium and vitamin D to keep the bone density loss down. I have to have my blood sugar tested to see if I am turning diabetic, and I could get a big face and gain weight. I am not sure about that last one as the drugs are making me nauseous and so I throw up a lot. I can not see how I could throw up so much and gain weight. I am also very tired all the time as I am still anemic.

My baby is four years old today!!!!!!!

The steroids are making me sick and cranky. They are helping with my eyesight, but all that seems to do is get me to see how sick I feel. I have to be well today though because….


My baby is four years old today!!!!!!!

Not so good...

I just feel like such a useless rag here. I can’t drive anywhere because of the double vision. I can’t walk because of the same. I am sick of looking at that darn scar on my neck that now looks really bad with the double vision. Some days I just don’t want to get out of bed. I go to sleep praying that when I wake up this bad dream will be all over with and I will be normal, but it never happens. I wake up all sick inside like I spent the night drinking away. I just don’t get it.

I get so confused. The doctor from NYC just called. Not only did I have to think hard on who he was but I could think about the doctor’s names that he was faxing my results to. I flipped through my book but came up empty. Finally I did get it. I feel so dumb they must think I am stoned or drunk. I slur my speech and am just clueless so often.

My mom and dad are coming over tomorrow for a visit. I am so happy about that. They are just coming for a visit not to sit with Anthony while I see a specialist or get a treatment. I am having to have her come also because I won an item on e-bay that I have to pick up. It has been over a week now and I told the seller the problem. She is a friend that I know through the theatre so she is very good, but I want to pay for it already. It is a Thomas Kincaid clock I got for Gregory for our anniversary. I got a super price on it so it is in budget and I have cash set aside for it. I squirreled the money little by little whenever I was given cash. Now all I have to do is get it.

My vision is still double but I am getting used to it so I can read again. I am on the steroids so hopefully I will see clearly again soon. I have to get set up for Friday. Anthony turns four ob Friday and he wants a Spiderman birthday. I want to make him a cake which will be hard with double vision. I would hate to buy one as I always make him one. I feel so useless. We also have to get his gift which we are sure will be Spiderman something.

On a happy note we all went to the movies on Saturday. I guess I got a bargain two for one with my double vision! We saw the chiwawa movie that Lara has been dying to see since she first saw the previews. It was a fun movie. The children had a great time and were happy to get out of the house after being cooped up all week.

New pain...

I have a pain in my chest at night and it becomes a bit hard to breathe. I fear that the Sarcoidosis is beating up my lymph nodes to a pulp in there or has moved to my lungs now. Neither is very good. I am thinking this is just going to get me. I am just going from one thing to another with no real rest periods.

I have been ill now since April!!!!!

When will it stop????????

The city visit...

I went into the city today to see the specialist. He is an ophthalmologist neurologist. We took the MRI films with us, as he wanted to see them first hand. Up until now they have been saying I have optic neuritis. The MRI did not show that but they said it is not always seen on an MRI. Well according to this new doctor optic neuritis does not cause double vision, and since that is the first thing I tell everyone he didn’t understand the diagnosis. The MRI does not show the optic neuritis, but it does show Sarcoidosis grains that are pushing against my optic nerve. This is causing the double vision as well as the blurred vision. So we are relived that the MRI did in fact do the trick. The official reading says it is all normal which we didn’t like. That would only mean more tests. So now we know what is happening and what to do about it. Unfortunately this means that the treatment is steroids. I can get low bone mass, anemic (already there actually) and diabetic. I have to take vitamin D and calcium supplements and have my blood sugars monitored. Hopefully this will not make me diabetic. On the superficial vain side I also hope I don’t get a big face. I will have 40 mg. for two weeks, then thirty for two weeks, then twenty, then ten. I see the doctor again in six weeks. I am going to stop going to the neurologist and ophthalmologist here in NJ. I will only see this new doctor in the city (New York City that is) and my Pulmonologist in NJ. They will work together as a team. The new doctor was not thrilled that I was diagnosed so long ago and as to date have had very little actual treatment. He is confident that my vision can be restored with the treatment. I feel like I got some answers today and although I am not thrilled about the meds it looks like I am on my way to recovery. I pray that is the case.

Follow up...

We saw the neurologist today. He said that the double vision could take time to go away he suggested an eye patch to block the bad eye so the vision is not doubled. Hopefully that will take care of the nausea as well. The MRI didn’t show anything wrong but he said it does not always show. The doctor is suggesting long term steroids, but I don’t want to get a big face. He also suggested a lumbar puncture test but that sounds painful. I was getting upset so he prescribed Zantax! I am not taking that as I think anyone would be upset in my shoes. It is not like this happy pill will make me see any better. I am going to an ophthalmologist neurologist on Friday in the city. I just want to be able to see normal again and not feel so sick. I feel like I am drunk 24/7. I hated my appointment today they were talking about me like I wasn’t in the room. Maybe next time I won’t go.