I hate getting stuck....(warning for weak stomachs)

with these dang IV needles every two weeks (and more with random blood draws). I have the smallest little veins and they are so finicky and like to roll and run away from the needle once it has penitrated the top layer of skin. I do not have the typical normal elbow area veins where most people would have and IV or blood taken from, those are almost no existant. I had an IV for 4 solid days during the induction of the IVIg 2 back in early June that was on hte mid right forearm and it is still bruised and the vein is still weakened. They tried to give me the IV there uesterday and it seemed to be working fine for about 30 seconds, then it blew the vein about 3 inches from the insertion point. My nurse, Sharla, was just shocked at where it blew as she had never seen that happen before. It makes a nasty bubble under the skin, then it bruises nicely. I bruise so easily anyway thes type of things do not help! After that happened, she moved up to my upper arm close to the armpit and found a pretty good vein there and we got the infusion going. Allwas fine through the 3.25 hours - I even slept about 2 hours of the time curled up in the chair under a blanket listening to Pandora. Once it was time to pack up to go, I guess I pulled the IV some and caused an infiltration (where it pulls out of its place) and the last 10cc's fed into my arm under the skin instead of in the vein. This med is actually designed as a subqutaneous treatment so that is not a problem - EXCEPT it hurt, itched, burned and caused a huge knot on my arm when the meds were sitting. It looked like I had an extra muscle on my inner arm -HA! I came home and put the heating pad on it for a couple hours and the area went away, so all is good now. I do have a bit of a bruise in the area and it is a bit tender, but what do you do?

So when all of this was going on, the nurses were asking me why I did not just get a port (portacath) put in for these infusion. I spoke to the doctor about that in the beginning and she did not persue it. I have such issues with my veins I think it is something I will be looking into further. i know my brother hated his, when he got it for cancer treatment. I also think that he was dealing with alot of pain associated with his cancer ravaging through his body at the time. I am tired of being dug on and bruised for weeks at a time and sore from the needles. I have to do this treatment every two weeks now and give blood often for testing. This would make all of that so much easier!! I think I will let the nurses look into it.

This coming week I will be having the first MRI since I started the IVIg. I hope and pray there will be some improvements on the lesions showing that this treatments is doing something for the MS as well as the immunity issues I have been having.

Infusion bills, insurance, government.....blah!

The MS medication industry is right up there in the way of costs with the cancer field. My first week of infusions were outragious - well, the insurance billed amount was. I just had my second round last week, and I will be taking them every two weeks now. This is a lifelong treatment....or until something better comes along. Until then, we have about 7 years, bar no big emergent bills, before the lifetime max on the insurance is reached. Wow, I will just be a little over 40 then......what will we do then?

Day 4 = $9,919.05

Day 3 = $9,619.05

Day 2 = $9,919.05

Day 1 = $9,969.05

Total = $39426.20

The hot question lately is about government run health care or mandatory minimum health care benefits for everyone.....stay out of my business, I say. I now live with several life-long health issues and I cannot imagine not having insurance, but it cannot be forced onto us in the way the government is wanting to do. It will fail....

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.