Post Infusion [15 days]

I am 2 weeks from the start of my first IVIg infusion and I feel really good. I have NO more sinus infection....it finally went away!! Big benefit of the IVIg there in itself! My energy level has been pretty good as well. I think I have had pretty good days overall and not really any bad days to speak of since the last day of the infusions. I go back on July 9th for the next round of infusion and then i will start going every 2 weeks. I will go back in mid July for another MRI to see how the lesions are doing and follow up with the Neuro shortly after that. Right now I have to go and get bloodwork done every couple of weeks to watch my white blood cell counts and liver and kidney levels.

I have been receiving hits on the blog quite a bit here lately from the web. I enjoy talking to people about LD and being able to help them if I can. It also lends to those who think they can give advice yet wish to remain anonymous.....often they tend to not know my situation and what applies to me. I love meeting new people and talking about these diseases, be real and honest with me and I will do the same with you! Otherwise, there is no need to even take the time to send a comment to me!

Summer Time Fun

Well, last years pool frustrations have finally paid off.....and the kids want to be in the pool ALL the time. They are having a blast and we are swimming alot. This one is turning into the snorkle queen, and she picked it up on her own. She is pretty good at manuevering the whole pool with the snorkle and mask now. They stay on their tiptoes in the pool so much that they break the skin on their toes open all the time from rubbing on the pool plaster. We are going through the bandaids...I need to get them some pool shoes. Even their little finger tips are getting blistered from rubbing the walls. But they do not care!! I think they would swim 24-7!!

Infusion Day 1

So here I sit, having my first round of IVIg infusion and will be here for another 2 hours. The IV was not too bad......Sharla, the infusion nurse, is really nice and did a good job. After about 10 minutes of the IV, I started to feel a little light headed and loopy. It only lasted for a few minutes and then it passed.

It's a GO!

So next Monday I will be starting the IVIg infusion treatments. The infusion nurse called today and said that the insurance approved the treatments. WOW! I was surprized! Next week alone is a cost of around $20000.oo dollars for 4 days worth of induction, and then I will go back once a month for an infusion and it will cost around $10000.00 a month I believe. Our insurance will cover the complete cost after we meet deductable(already there) and $3750.00 out of pocket. We are about $2800.00 shy of the out of pocket right now.....BUT then I will be covered 100% on everything else for the rest of the year. WOOOO HOOOO......you know you are getting old when you get excited about meeting your medical deductables and out of pocket expenses..... Sad! :)

I went back to the ENT today and he is changing my antibiotic again. I still have a sinus infection but it is migrating all around now. He seemed excited about the IVIg treatments. He seems to think I will feel much better after the treatments and will see great improvements in my infections and allergies. He thinks it is a great thing so that we can avoid surgery!! YEA!! I was not looking forward to sinus surgery at all!! The more I read on it, the better the benefits are sounding to the infusions.....I am just kinda nervous about the IV part now. I hate being stuck and dug on because my veins are so little and I bruise so easily.

What will be the next step for me?

In my MS treatment.....that is. I am working on figuring that out at the moment. After my MRI last week, I learned that I have apparently had some silent lesions working although I have been physically feeling well lately (besides the pesky sinus issue). I have some lesions that have enlarged and a couple new areas with lesions that were not previously there. In total I am looking at 4 places that have grown or become active since last August when my last MRI was taken and I had been showing improvements. I was shocked and almost in disbelief when I first heard the info. After a while I worked it back into my head that I know there can be progression with out symptoms....it is a fact of this disease. Many people will go undiagnosed for years with silent lesions then one will hit in just the "right" spot and bam....they do an MRI and tons of them will show up and eveyone will be surprized. It is almost like 2 steps forward and 10 steps back, or it feels like it anyway. The doctor talked to me about the options....or lack of, really. This is MS, there is NO cure. Steroids are pointless really as we do not know when this happened, and so what would that help, nada? Switching interferon meds.....well, same sort of meds may not really be any more effective, as the one I am on is one of the best, and why beat a dead horse(still taking it, not changing)? The other form of med I chose not to go with, as she also choses not to use, Tysabri, due to the extreme side effects and deaths it has caused. The other option is the IVIG treatment option she has talked in the past a few times. There seem to be many benefits to the treatment the more I read about it. I have decided I will do it, if my insurance covers it. It is not cheap by any means, even with insurance I will be paying alot of money out. I just want to feel good and get through this sinus stuff....I thought I would be good once that was done. I go back in 8 weeks for another MRI to see if anything else has happened in the meanwhile. I am currently waiting for the insurance to verify the request on the IVIG treatment and then we will go from there.

It's the Debil Bobby.....

I tell you the internet is the Debil! And it sucks me in....being that I am a self-taught graduate of ER's medical school and can diagnose myself with the help of WebMD and PubMed.......no problem.

Seriously though, I can let my mind get away from me sometimes when I get calls from the doctor about MRI's that are not what you expect them to be. Tonight at dinner the doctor's assistant, Matt, called to tell me that my blood work from last week all came back normal. That is awesome, my liver and kidneys are all ok it seems. I then asked huim about the MRI as I had not heard from anyone on that yet....oh yeah, Dr. Cantrell made notes on that here, she says.......(uh, um, if I can read her writing...) um, hang on.....ok, the MS lesions are larger it looks like and active so she wants to make an office visit to discuss treatment options. When can you come in?

That is not really what I was expecting to hear. I mean I have been feeling fine....not any symptoms really lately. I thought I would see vast improvements by now on the Betaseron. It makes my mind race and wonder. I want to have the reports and MRI cd right here so I can look at it on my own. I have gotten pretty good at reading them and comparing them for myself over the past few years. I am glad I get to go in tomorrow and do not have to sit and wait around for too long to stew on it. That would push me over the edge I think. I am already frustrated that the new antibiotic does not seem to be doing what is hould and I and supposed to be going back to the doctor for that on the 3rd. I guess he will be able to look at the new MRI and see what he needs to see there as well.

Prayers - I need them right now - for peace of mind and health of the body & mind!

When do we really become old?

I mean it??? I have never really had an issue with actual age. No birthday has affected me like 30th might, or the dreaded 40th as it does some. I think I have honestly never had any problems with my age at all. I am however beginning to think that, mentally anyway, age might be becoming an issue. I feel more overwhelmed by things in such ways that they might have never bothered me before.....I am not having regrets about my life, but looking back at friendships from the past and wondering what happened to them. How do they drift away, or fade like they do? Why does it seem like it was only yesterday that we spoke to someone but it might have been 20 years since we saw them? Seriously.....I think Facebook has done this to me......

I tend to be a deeply caring person, once you are a friend, you are usually more like family. I adopt people....I love them, hurt for them, and with them. I would do anything for someone like this I was close to.....even if it has been 20 years (give or take a couple). It is getting harder to reconcile the pictures in my mind with the reality of today, sadly. I know and understand people change and may not have the memories of yesteryear that I do, but it is still hard to wrap my head around at times. Can you ever really go back and pick up where you left off with an old friendship? I have a few friends that I have been blessed to be able to do this with.....very blessed. I wish I was able to be closer to a few more old friends........maybe in the future?