Not good news...

I had my last of my four treatments yesterday. I wish I could state that I was a model patient but I wasn’t. I just can’t take it anymore. I know some have been sicker a lot longer, but I am just tired now. I was crying when they did the IV which is not like me at all. Heck I watched my amnio with Lara how bad can an IV be? Anyway the treatments seemed to have just alleviated the pain. I am still not seeing right. My vision is blurry and double. I can barely type this and can not read at all. I woke up Saturday and today like I have been drinking all night long. Of course I hadn’t but I feel that way. I feel so sick today I just don’t want to do anything. I have to though. I have Anthony to take care of and dirty clothes to wash. I also have to get my but in the shower, as I have to go get Lara at school at three today. I am thankful my FIL whom lives across the street comes over and does the driving. All I have to do is get out and get her while my FIL stays with Anthony in the car. I just wish I could do things. I miss doing my graphics, watching TV, reading, walking straight, driving, etc. How do people manage to stay sick long term?

Some background...

In case you wanted to know what I look like here is a rough description. I am a 45 year old woman that looks a bit younger as I have a baby face and never was a sun worshiper. I am five foot eight inches high with dark curly hair that is about mid back. The curls are tight little ones, not waves. Kind of like Mel Gibson in “Brave Heart”. Anyway I have very pale skin that gets sun burned if I think about going to the beach. I have blue eyes, and weigh about 122 pounds. I have longer legs (34” inseam) than most women, and a short torso with long arms. So clothes’s shopping is not fun. Nothings fits, and everything has to be altered. That is about all I can think of.

My eye treatment...

I had my first treatment yesterday at 11 AM ish. I still can not see out of my right eye, but the pressure and pain is less. Still not sure if that is the treatments or the Percocet. They were all very nice there and made sure I was OK. I was not a very brave soldier and was crying a bit at first. I was nervous about getting the IV in my hands because when the anesthesiologist did it there it really hurt. This one didn’t though. Today I go for my second session. They gave my mom and I some lunch while we were there. They also had a whole snack bar set up. Very nice. Still worried about if my vision is going to be restored. I keep on walking into walls which in my house hurts as they are all made of cement.

Right eye is going blind...

I had my MRI yesterday. I just couldn’t take it and lost it after they gave me the IV shunt. I have had just too many IV’s as of late. Anyway I had the MRI and the third injection of stuff in two days. Then I went to the Neurologist appointment. He wants me to get steroid IV’s for the next four days. He says that the optic nerve is being pinched by the Sarcoidosis and if I don’t I would go blind. My parents are coming over today. My dad will stay with Anthony while my mom takes me for the IV. They said they could do it at home but things are so messy here I just don’t want anyone in my house right now. KWIM? Hopefully the IV’s will work and not hurt too much. The dye that the eye doctor put in hurt as did the IV for the MRI. So maybe my veins are getting sensitive from over use?

I also hope the steroids won’t make my face big. I’m ugly enough on my own.

My right eye is really bad now...

My right eye is really bad now. I am back on Percocet for the pain. That takes away the bite but not all of it. I can not see very well out of it. Up to yesterday I was seeing dark clouds. Like in a painting when whips of clouds are over the moon. Now today I am also seeing sparkly stuff. I am concerned that I might loose sight in this eye.

I went to the eye doctor yesterday and he gave me some tests that I failed. I am going for an emergency head MRI today to see if the optic nerve has Sarcoidosis. I am then seeing a neurologist to see what can be done. Yesterday the eye doctor said if it is Sarcoidosis there is no cure for it. So things are looking bad for me today.

My eye is bad...

Well my eye has gotten worse since Wednesday. The pain just increased every day until I just starting popping my Alieve every six hours. On Saturday we were supposed to go to the Renaissance Faire and Sunday we were going to the air show. It was supposed to be the super fun weekend to make up for the lame summer that occurred because of Momma’s illness. Well Saturday the first thing I felt was stabbing pain in my right eye. I couldn’t function. Greg got me some Alieve, but it still hurt so I called my doctor up. The primary one. I got to see him at 12:15. He said it was a sinus infection and prescribed some Omnicef, and some nose spray. The nose spray with insurance was $26! When I asked the pharmacist she said without insurance it is $130! Ugh what is in this stuff? Gold? Platinum? Anyway, when all was said and done it was after 3 PM, so the faire was out. It is over an hour drive and closes at 7 PM. It also is too expensive to miss out on most of the day. So we went to the air show. We got there at five to four and waited five minutes to go in because at four it became free. It was only open until five. So we had an hour of air show. There were old cars there but most had left so we only saw planes. Lara and Anthony enjoyed it; Greg wished he had more time.

On Sunday we got to church, CCD class, and then went to the faire. We left at about eleven thirty and got there a little after one. The children had a great time there. They loved the “dragon swing”. I had dressed up in a dress and was going to wear my corset, but Greg said it didn’t go well together so I only wore my dress. One person stopped me and said they thought it was beautiful and that it fir me very well. I was so touched by that. I like the dress too. I bought it on e-bay and wear it when I get dressed up. What can I say I guess I dress retro because it fir in with the Renaissance look so well. Anyway we walked around for a while, and tried the games (lost most) except one that Lara won and got a necklace of bones and skulls. Anthony lost at that but the game keeper (is that the title?) felt bad and gave him a necklace too. She knew that he was feeling bad because his sister had one and he didn’t. He had a huge frown on his face and my heart melted. I guess hers did too so she gave him one. He brightens up and everyone beamed. Just before that though I had to take a rest, as my eye was hurting again. I had to sit. Greg kvetched that we weren’t in a sitting area but what could I do? I was in pain. Anyway we went on a little and then I had to take another rest. My eye was bad for the rest of the day but I didn’t want to go and disappoint the children. They were having such a great time. We saw the living chest game, and a puppet show. They were supposed to go on the stage and sit for the latter but of coarse mine preferred the mud instead. We ended the day with the pub songs that I love. The final song being “Will you Go lassie go” I really like that one.

By the time we got home my eye was in a lot of pain and I had to go to bed. Greg wasn’t happy he had to take care of the children. He must have changed them and stayed in the living room because sometime after going to bed Anthony joined me. Greg didn’t come in until a long time after that so he must have been asleep on the couch again. I awoke in pain again today. I took a hot shower but it really didn’t help much so I took a Percocet. That took the bite off of the pain and now all I have is a dull ache. I can’t however see very well out of my right eye. I have black spots. Greg had to drive Lara to school. He was mad about that. I guess I will walk to get her later on or try to drive. I need to get blood work today and I just don’t know how I will get there. I am just a mess.

Not Sarcoidosis...

I went to the eye doctor last night and he did not find any Sarcoidosis so I do not know why I have the eye pain. It started a few days ago and is still hurting today. The eye doctor thinks it could be a head ache and to see a neurologist. Right now I am just seeing if it goes away on its own. I have the bone scan scheduled for Tuesday and I have to get the blood work done as well.

Greg is home sick today so not much time to do anything.

Ugh! It is back!!!!!!!!!

My Sarcoidosis is back again in my right eye and nastier than ever. I was in such pain before but I took two Alieve and it has calmed down to a dull ache. I am just so mad that it came back again so fast. Greg was going to call to make an appointment for the scan, and I have to get blood work to see how my anemia is doing. I feel so tired I just know it is low. This has been going on so long. I was so happy when I was drug free, but that doesn’t seem to be the plan for me. I am probably going back on the eye drops again, but not the Percocet. For the moment the Alieve is working OK so I do not want to take anything stronger.

Needless to say until I get my last bone scan and bone marrow biopsy that TTCing is out. I can’t possible introduce any baby to those chemicals even if I were lucky enough to get pregnant. My luck I probably would, so I won’t even try. Good thing for us is that I actually can’t get “accidentally” pregnant. We have to try.

Lara is not having an easy go of it at school. She clings to me every morning and makes a scene. She does not want to leave me and we are not sure why. I personally think she is afraid if she goes I will get sick and end up in the hospital or dead. She says she wants to stay home and be a little girl with me. We already bought our Halloween costumes. Lara and I are going to be matching ladybugs and Anthony will be a bee. We bought wings at “Claire’s” last week. All I need is pants and shirts. Lara wants to be all sparkly with me. I am in shock as this is just not like her. She doesn’t usually go for the glam. Last year she was “Thomas The Tank” for Halloween. So I am not sure what is going on in her head. This year she has regular class and then special ed classes for math and writing. So far all we have gotten at home is one work sheet where she wrote “h’s” down. Ugh he is past writing letters and I hope she starts on words soon. She started religion class on Sunday but would not let me go so I stayed with her. She cried a lot. Unfortunately a girl from her class was there and saw this. In line on Monday she was telling another girl all about it. I stopped her and asked her if it happened to her would she like others talking about it? She said no, but I know she gossiped about it later. She just had a defiant look in her eye.

Anthony is doing OK. He plays quietly mostly during the day. He does like to open things, climb and explore so I have to keep an eye on him when it gets too quiet. KWIM? He is still working on his alphabet, and watches the Leap frog DVD’s.

Greg has a cold now and is teaching a class so he can not call in sick. Now after work he has to drive me to the doctor. I feel bad for him.

I Remember, and always will....

September 11, 2001, I was working in Moonachie, NJ which was right across the river. I was working in a lighting shop we were counting the equipment that the MTV awards had rented. I remember seeing how blue and clear the sky was and how dark and horrid the cloud was. I had neighbors and friends that worked in and around the buildings. Ironically enough we were inside and so did not know what was going on until after tower two was hit. We were listening to "Howard Stern" on the radio. Apparently either they did not look at the associate press updates (I think Robyn did?) or did not believe the news as it came in. At any rate we didn’t know about it until way into the even. When we heard the towers fell I just could not believe it. I had stood by them. They were so massive. I could not believe anything so big could go down. I just believed it was a hoax, or I just prayed it was. Eventually we were able to get news and we knew it wasn’t. The shop wouldn’t let anyone go. Eventually at about 11 AM I went into the office and said I didn't give a damn if MTV had kept all the stuff and was going home to see how many people I knew got out alive.

I went to a friends house whose husband worked right buy there. She had a leg that was hurt and was not able to leave the house. I knew she was all alone and so for the only time ever went there without calling first. Actually I tried but all lines were jammed. All phone lines whether ceil or land were jammed. She wasn’t sure if he was dead or alive. I stayed until he got home. He was dusty from head to foot. I think he ended up getting home at about 9 PM; he had started at 11 AM. The city was just at a standstill.

Most did, but one who worked on the 95h floor of tower one did not. She had just returned from maternity leave the day before. She left behind her DH, a DS that was three years and a DS that was three months old.

Yesterday I watched the memorial as usual and just cried the whole time.

Not doing well...

Today again was hectic. I didn’t get into the bathroom until 7:30! I have to leave at 8! Greg got in at 6 AM according to him, so WTF take sooooo long? I am thinking of putting a spy camera in there. So today again was hectic and again Lara clung to me crying she didn’t want to go in. We got to school in time for line up but then she clung to me while the class went in without her. A worker there took her in. She was screaming for me the whole time. I just can’t take that anymore. What can I do to make her accept school? Any suggestion would be great as I am clueless.

I think I might be getting drug withdrawal, as I just can’t sleep at night. I am getting cold, then hot and sweaty. It is a withdrawal symptom that I read about so I know it could be psychological as well. It only started on Sunday which is over the 6-8 hours after my last dose but I took it for so long. Almost two full months (or was it a little over two months?). At any rate I am sure it is withdrawal and so I just don’t feel right. I have been through this before so I know the feeling. All I can do is ride it out. Greg wants me to get the bone scan and biopsy but I am not loving that idea.

My insomnia could also be to the upcoming anniversary. Seven years later and I still feel the pain as if it as today. All of the innocence lost both on the planes and in the buildings. They had a show on the history channel last night and I just cried the whole time. They showed what the plane did with computer graphics when it hit tower one. How it disintegrated into the building and stripped the fire proofing away. All I could think of was that I hoped it had hit my friend. That she went without knowing or feeling anything. Then the guilt of knowing that others were not that lucky. What about them? And the people on the planes. Some babies and small children what of them? It just hurts so much. Then the event ion Washington and the Pentagon, and in Pennsylvania. So much lost in such a short time. Anthony was watching with me, as it did not actually get very graphic. The computer animations were like line drawings on grid paper. He did see the towers collapse and the pentagon as well. He now wants to go to the site to see the footprint. He will have to wait as neither Greg nor I can go there yet.

Stomach Bug...

I think I have a stomach bug as today I am going to the bathroom a lot. Yesterday I was sick all day, nauseous and throwing up. So I think it is working its way through me.

I cancelled my pain management appointment for tomorrow as I am handling it on my own. It have some pain but nothing that I can not handle and right now I just want to be drug free.

Greg was really bad today and just wouldn’t get up. He overslept by one hour! Everything was off and everyone was cranky. It was an awful morning. Lara cried all the way to school and then clung onto me crying. I just can’t take it anymore. I swear I want to get a cattle prod for that boy! I mean if things were less hectic here maybe Lara would feel better. KWIM? As it is now all we do is rush, rush, rush. All because Greg doesn’t want to wake up first. Well he is the one that needs over and hour of solid bathroom time to get ready for work. I only need ten minutes. So what should I do? Wake up and hour early so that his highness can sleep an extra ten minutes? Don’t think so. Then I would be up and it would be too early for Lara to get up so all I would do is wait? Ugh this boy just got too much mommy and daddy service for way tooo long!

Sorry for the kvetch.

Goodbye Medications!!!!!!!!!!!!!

I am down to one drop a day with the drops and some days I skip them. I think this next appointment will be my last. I am sick of these meds already. I still have the infection on my cut. I put stuff on during the day with a bandage, and stuff alone at night to air out. Well I got the results on Thursday of all the tests. The heart test had not come back yet so that will come the next visit. The radioactive one showed Sarcoidosis in my lymph nodes in both my chest and neck. Now the doctor wants to do a bone scan to see where the pain is coming from and then a bone marrow biopsy. Not sure if they are suspecting marrow cancer and so am confused about that test. We have to get approvals of those tests and I just don’t want to do them. Greg is also wondering of I can go solo so he doesn’t have to take off from work. The first one requires radioactive injection which made me nauseas and the second I think is quite painful from what I have heard.

Friday was another rough day of Lara not wanting to go to school and ten not wanting me to pick her up. We got a whole list of supplies to get for her special Ed class. So we have to go shopping again. We stayed at home at night because of the coming storm. I was very tired and slept through the night. Right through my 3 AM Percocet alarm. I woke up at 8 AM Saturday.

Saturday I woke up at 8 AM with a neck ache and back pain but nothing that severe. So I decided to skip the Percocet. I am happy to say I haven’t had another one since. It is so nice to not have to worry about what time it is and when I have to take my next pill! The storm came at about 1 PM. About noon Greg mentioned our gutters were probably clogged and that we would have to clean them out. He also wanted to take everything of the floor in the basement. We have some toys and such down there as well as some jar and canned foods. When we fixed the plumbing we moved the downstairs cabinet and never put it back. So the food was on the floor on bags. Only jars and cans no boxes, as they would get moldy and book lice. I took the job of the gutters. Greg got the ladder all set and I did the whole house’s gutter in about a half hour. I am good with ladders even if sick! Greg is too cautious and would have taken longer. Anyway as I put the ladder away I felt the first drip, so I took just the right amount of time. They were really clogged too so no doubt we would have flooded had I not done that. We had some minor drips in the back room, but no flooding. When we saw the radar we saw that the majority of the storm was west of us and east of us. We were in a little pocket this time and so were not hit hard.

Today I woke up achy and nauseous. Not sure if it is Percocet withdrawal or not as I have had bouts of nausea for a while now. Also I read that withdrawal symptoms start 6-8 hours after the last dose and since my last one was Friday at 11 PM I think it is too long for that to start now. We managed to go to church, and then Greg went to work to prepare for a class. I am home with the children. I was going to visit my parents but I am just not up to it now. I just feel so sick. Just waiting for the hag to show up at my door.

Busy days...

Things are not well with my incision from the biopsy. Unfortunately it is now infected and oozing (sorry if TMI). So now I have to keep a band aid and antibacterial ointment on it during the day. At night I air it out with just a dab of ointment. It is also very itchy and a tiny bit painful.

This week has been so busy! Monday was a lazy day for us, but Greg was home so he kept me from the computer. We ended up going to visit my parents in Pearl River and staying for dinner. We ordered pizza from a local place in Nanuet. It is sooooo good. They make everything themselves so it is not like any other pizza place as most buy the ingredients and just put them together. Not there they make it all home made and I love it. We all had a nice time there.

Tuesday we had the meeting to get all the information about Lara's schedule. She will be in class most of the day but pulled for Math and English. She will be then in a small group with two other students so she will get a lot of personal attention. Later on we rushed the vaccine record to the doctor and got her shots. Turned out all she needed was a chicken pox update. I was happy they did not charge a co pay for the shots as we had already paid a co pay with the exam. I am positive the old doctor would have charged us. I love the new place. Later Greg wanted to go to do “something fun” outside. Well with my eye I just can’t do it. So he stayed in too. I mean why? I finally told him off. All last year I managed to take the two children to their favorite park by myself. I would walk there and back (about a mile, but uphill from us and a steep hill at that). All he had to do was to take the car, but he didn’t want to go alone. Ugh. We finally all went at 5 PM. We stayed a long time and by the time we got home I was exhausted. I got Greg to give the children a bath while I went to sleep. I was only going to take a short snooze, but slept through the night instead.

Wednesday I was up early to mark all of Lara’s school supplies. Greg slept late (big surprise there!) and slowed things down a bit. Lara was not very wiling to go to school. She didn’t want to get dressed or eat her breakfast. I tried to get her excited with her new school supplies but that just didn’t work. Later on we were a little late for school. She made it in time for line up but just as they were going in two seconds after we went in line. Greg was still parking the car. Well she had a fit and refused to go in. She was screaming and crying so I had to get her alone as to try to keep things as private as possible (although everyone was staring at that point). She refused to go in. Greg showed up and I wanted him to help. He had Anthony though and so stayed away! Ugh! Tanks Hun! NOT! Anyway so eventually I get her in the office. She still says she will miss me and she wants to stay with me. The office lady takes her to class and when she got back said Lara was fine by the time they got to the classroom. When we went to pick her up she shouted that she hated us and ran away! Poor Greg was there with a camera and what we got was her yelling at us!

During the day we took Anthony to the doctor as he said his back hurt. He fell from the windowsill last week and according to him his back still hurt. I didn’t know at the time he had fallen so far. I thought it was just the toy box but I guess he has done that enough so he has to move higher up now. It is high and our floors are cement so it can cause damage. When we got to the doctor though he was sooo happy he got to play with the toys there. I started to think he only said his back hurt to get to the toys. Greg thinks not, but I think so. I also had an eye exam last night. The doctor said my eye is getting better even though the drops hurt more to put in. So now I am on one drop a day and so can drive again!!!! My right eye is not all blurred out. A little out of focus but not all blurred out. I am happy about that. Later on we had ice cream at a local place that makes it home made and home made whipped cream. Very tasty!

This morning things did not go smoothly. At least Lara stayed on line and went in with her class. All I had to do was stand by her but there were no tears. I kept trying to move away but to no avail she would pull me back to her. Oh well at least it was progress over yesterday. Again Greg slept late. I just don’t know how to get him out of bed on time. He had the whole summer where all he had to do was get himself ready and so is spoiled. He wakes up late and messes everything up. Do they sell cattle prods on e-bay?

Later on today I have the appointment that will give me the results from last week’s tests. Wish me luck!