Thursday, February 28, 2008

She's baaack!

The title is what my husband said earlier tonight, as I was getting after the kids for fighting. Followed by "It is so good to not be the only one hollering at them!" LOL the things we celebrate. Yes, I am hollering at my kids again. Well, more like loud whispering as I still don't have much of a voice, but I woke up today and I swear I can actually feel my body healing. Incredible.

The bone pain is wicked, but my mouth is no longer swollen and the pain there is minimal. Especially compared to what it was a day or two ago. My throat is not as sore, and I am able to talk, although it can be hard to hear me. I have some holes in my tongue, a massive one on the side, from the canker sores and still soreness as they are healing, but they are HEALING.

I had a bit more energy today. Not a lot, but it's there and that's what counts. I had an appetite today! I haven't cared about food for DAYS, which for me is shocking. Now I just need to get my mouth healed so I can EAT! Still doing soft foods and soups, nothing spicy or that will aggravate the canker sores, but I'm miles better than I was a few days ago.

I had a blood draw today, hopefully I will get the results when I go in for my shots tomorrow, and I know progress is being made, I can FEEL it.

Incredible. So far no signs of vasculitis returning, I am starting to get my hopes up for remission. I can hardly imagine how I will be with energy. And I should get to keep my hair this round. ;)

Wednesday, February 27, 2008

Two shots today, very tired

I went and had my two shots. The epogen doesn't burn as much as the neuprogen, so that's good. I treated myself to some matzo ball soup from a great place near the hospital. Soup is my main food right now, as it requires no chewing, although I did have scrambled eggs and toast last night.

I wasn't able to sleep much at all last night or today and am exhausted. Not seeing a lot in the way of side effects, diarrhea and the bones aching is it for now. Opted out of going into work, hopefully tomorrow will be better, especially if the red blood and white blood cells start partying. My bones were really hurting today and I was tempted to call and beg for some sort of pain meds, especially after being awake last night from all the different pains, but I didn't. I'm not sure why exactly. I would be perfectly justified in asking for something, but I hesitate to ask.

My left arm still hurts from the neuprogen yesterday and my right is aching from the two shots today and I would dearly love to sleep for hours, but I'm not going to get my hopes up.

I do have a better perspective today and I know that when my immune system is restored and we can see for sure the vasculitis is in remission I will definitely be celebrating. Maybe that nice dinner the nurse suggested. I am trying to focus on the positive side of all this, that the vasculitis could be in remission and only six months after my ER visit. I keep warning everyone to watch out, if I am in remission and get my energy back they are all in trouble. It's weird to imagine what I will be like WITH energy though, it's been so long since I've had very much of it.

Tuesday, February 26, 2008

Please Sir, May I have another?

The one shot of neuprogen everyday is not cutting it. This news did not surprise me considering how awful I feel. They are now going to give me another shot in addition to to it on Mondays, Wednesdays, and Fridays. This is to boost my red blood cells as well. I once again forgot to ask my wbc test results and the name of the new shot so I have called back to ask if they could let me know.

I am absolutely miserable. Lots of pain, can't sleep, feel horrible and I am trying to spend time with my kids, get myself to the hospital each day and put in a few hours at work. Work has said that I can take as much time as I need, BUT we are already taking a huge cut in income for the time I am losing and there is so much to do as it is the end of the month it is easier to do myself than try to explain to someone else. Which would be extra excruciating given the horrible sore throat and canker sores. So, I drag myself up to the hospital, get the shot and/or blood test and now second shot, go to work-where my kids are, get a few hours in and we all go home where I take some more drugs and promptly crash. Until the mouth pain wakes me up again.

Eating hurts, I am having to make myself eat, at least I am on vitamins, but good gracious my diet is not as healthy as I'd like. It just hurts too much. I'm doing much better with hydration, since my ER trip I am mainly on water and some tea, and that has stayed the same, except in the more horrific stages of cankerpalooza when I couldn't bring myself to swallow unless I absolutely had to.

There are times I want to call and beg them to give some painkillers, something to knock me out, and shockingly times I've even thought I might be better off in the hospital. But, then I wouldn't get the snuggle time I do get with my kids and it would cost a bajillion dollars more and obviously my doctor thinks I am doing okay at home.

My husband has hit the end of his rope, stress wise, and I understand. I alternate between wanting him to just hold me and wanting to let him vent because I know it has to be hard to take on the role of EVERYTHING in the house, with only a few breaks here and there on top of a full time job and to see your spouse sick and hurting.

Rough times, rough times. I'm struggling, near tears too easily most of the time-more than my usual sappiness and really just wanting this to be over. It seems like just when I think it can't get any worse, it does. Although the optimist would reverse that and say that just when I think I have handled as much as I possibly can, I get an opportunity to handle something even more imposing. I am having a hard time dealing with my optimistic side. Pretty much squashed at the moment.

Monday, February 25, 2008

Optimism is wavering

I know there is a light at the end of this tunnel, but it seems farther and farther away. I now have a cold on top of all this, and as I have no immune system yet this is not good. I already have a hard time doing things with the infections in my mouth, it's like it saps any energy I have to fight that and now a cold and sore throat. The pain in my mouth wakes me up during the night, I cannot wait to have a full night's sleep.

The shots are still no fun, I go for daily visits to the hospital and every other day have my blood drawn and then get the shot. I always need a bandaid because my blood doesn't clot very well. Kind of interesting to see those little things.

It's hard to be told something so huge, like going off the cyclophosphamide, and be so excited to be healthy only to learn that the road to get there is a rough one. I just want to be better.

I'd love to see the white blood count come back higher today, but I'm doubting that with the onset of this cold. I guess we'll see.

Friday, February 22, 2008

Soooo, here is an update and potential good news!

It's been a crazy week and a half for me, whew. One of my sisters bought me a plane ticket to CA to visit her and my other sister and her family and our grandparents. My brother was also out there. I was blown away and it was so good to see them all. My sisters had last seen me in the hospital and right after, I was in pretty rough shape. Since then I have lost almost 40 lbs, I still have my struggles, but I look a lot better.

They were shocked. We surpised my grandparents, we went over for Sunday dinner, they were expecting my brother, I waited outside for them to all get in and then knocked on the door, my grandma opened it, couldn't make a sound she was so surprised and then started screaming My grandpa was sitting there with his mouth open. It was the best, really hilarious and fun.

My little nephew man is growing up, he is 2 and talking in fantastic sentences. We did quite of bit of playing together, and he can now ride his tricycle! I had so much fun out in the warm, beautiful weather seeing all of my family.

Then things got tough. I take it much easier these days than in the past, I have to as I've learned, and this trip was pretty darn relaxing. I had felt a canker sore or two coming on, this turned into 7 canker sores at once, and moved into my gums. Kablaam! I spent the last two days of the trip down for the count, in excruciating pain surviving with ibuprofen, orajel/anbesol, ice packs, and swishing with peroxide. I had an appt already with my doctor, went in and he said "That looks very painful, and very bad." and promptly fixed me up with some great medications for it all. AND he said that he thought this and my recent vomiting episodes could be due to the fact that my vasculitis is under control and now my immune system is being too suppressed. So, Thursday was last day on the cyclophosphamide. I wasn't excpecting this for at least another 6 months. I also found out my white blood cell count was very, very low, so I have to go for shots in the arm to boost that, as well as blood tests every other day.

Finally today I was able to up and actually do things. It has been really, really rough and I've been in and continue to be in a lot of pain, but I keep trying to think that this could be the beginning of me coming off all these meds and potentially living a "normal" life for awhile. So long as the vasculities doesn't come back or flare up.

I know this is incredibly long, but I needed to get on here and post, between as sick as I was, then trying to get everything done, then the trip, and the new sickness I haven't had time for ANYTHING. I am making myself be up and out with my family tonight because I have hated not even being able to talk to them-although that isn't a whole lot easier yet lol. Soon, soon.

Thank God for the bright side.