Wednesday, December 9, 2009

Explosion or Implosion?

I do not know what is going on with my body right now but I do not appreciate it for sure. I have had a headache for days now and it still continues. Driving yesterday was strange to say the least. I literally had to call Ken and ask him where something was because I could not remember. That is so not me....I do not get lost or have problems with locations or directions. I had to stop and rethink about where we were actually going after we had been driving for a while as I had totally spaced it and did not remember where we were going. It took a minute but it kicked in and I was fine......I kinda got spooked for a minute thinking about the "what if's" that could happen, but I had to get past that and continue on with what we were doing. I was all over Dallas all day yesterday as well. I had to go from Aubrey to Sachse, to Carrollton to Lewisville, to Irving, back to Carrollton, then to Denton and finally back home. I was mentally exhausted by the time we got home because I was focusing on the task at hand.

I still have not heard anything on the MRI. I hate waiting on these things. I am sure I will hear about the newest blood work in a couple days.

On a good note, we had family pictures taken over the weekend and they turned out really well. My friend Tori did a great job!

Monday, December 7, 2009

My head is swimming.....

but I feel like the rest of me is sinking. I am sluggish and tired. I want to crawl in bed and stay there.....I think I would if I did not have things to get done. I literally feel like the old commercial that was for a cold medicine...."medicine head".....where the balloon was lifting off the cartoon head. I feel like that but it is not a cold. I wish it were so easy.......

I just got a call from the neuro's office. They want me back to get more blood - VAMPIRES. My ANA titer was off - which it has been in the past, but she is worried about it, as she has never seen it, only my other docs have. I have been looked at for SLE or "Lupus" before with no positive diagnosis only "possible" multi-connective tissue disease. Auto-immune stuff really sucks......this past week has been for the birds, I tell ya! I am not supposed to do any more IVIG for now as my WBC was lower again this last time and the doc is telling me to hold off on any more treatments. I still have to get my blood looked at every week once again to see if there is any change, and once I make it in to them, we will see what the hematologist has to say about all of this. As for now, the neuro will run a full ANA panel and we will see what that comes up with.

Until then, peace up, peace in, peace out....

Saturday, December 5, 2009

Slacker Update

Well, I went to the neuro and she decided I have been in an Exacerbation or that is what it sounded like with the brain fog and fatigue I have been dealing with lately. She thought it would be best to start a three day dose of Solumedrol (IV Steroid) which I have never done before and never really wanted to start doing, but this time I conceded. I figure I will try it at least once and see if it benefits me at all. I think I was freaked out by the thought of what it could cause my Lyme to do in the past, but I think I am out of the woods in the case of LD now. So I did the first dose of IVSM in the office when I had infusion on Thursday and it went fine. They then arranged for a Home Health agency to come to the house an deliver the next 2 doses to me and show me how to administer the next treatments myself. We left an access needle in the port overnight and I did the final dose today and removed the needle after it was finished. I have seen this done several hundreds of times now so it was really nothing new to me - I just actually had to do the Heperin lock on the port line myself rather then the nurse doing it like after my IVIG treatments. No problem there! I also had another round of MRIs run yesterday to see how they compare and see if there is any new activity. I do not know when I will hear anything back on them. I do not have an appointment for follow up with her until the end of January.

I also made the appointment to see the Hematologist, but cannot get in to them until Dec. 22. The neuro took about 8 vials of blood for her own tests the other day to compare and see what the hematologist has to say when they look into the blood as well.

We are also looking into CCSVI and possibly going to have me tested for this as a possible cause or problem leading to some of my symptoms. I sent some info to my vascular surgeon and I hope he will be interested in looking further into this and helping me out - but I have also listed myself as a candidate for the study. I would have to fly to Buffalo to do the testing but I am willing to do that! It sounds pretty promising! Anything to advance research right.......

Tuesday, December 1, 2009

Call Me Slacker

I have not blogged in so long. I have not felt like it. I am not sure why really but I just haven't. I guess it could be the obsession with Facebook competing with my bloggin time. What ever did I do with out Facebook in my life?? How did I ever get along? I am sure I was more productive but felt less "connected". Why is that?

Anyway, I have been doing pretty good I guess. There has been nothing huge in the medical department which is a good thing, right? Well, we have been watching my White Blood Cells play like a yo-yo and go up and down constantly for months now. I maintain a relatively low average count anyway, but it is staying lower than normal now. I will be seeing a Hematologist soon - made a call to one I am familiar with today. I have a follow up with the neurologist in the morning. I have had some brain fog the past couple weeks. I seem to have some short term memory loss, more than normal, scatterbrained like - where I would not normally do silly things. I have been brushing it off (to busy-ness) but Ken mentioned it tonight so it is noticable to others. Great!