Doctors visits, treatments and medication, oh my!

It has been quite some time since my last post, so I have several topics to cover. First IV therapy and my port, Dax. Things are going well in those areas, the port is one of the best decisions I think I have made for my health. It is just so much easier now to get IV therapy! I am still getting the multivitamins, minerals and lipids and they have added amino acids to the mix. Well not really, because it is in a separate bag. So now I get 3 bags and it takes 5 hours (average). Depending on whether or not I have labs. I get them every week. I have the weekly labs and every other week they add in a PT INR and once a month I have a HUGE list in the place of those. I enjoy getting the IVs, I think of it as a spa (LOL). I go in 3 days a week, so it is exhausting but I think it is helping.

When I say helping, I don’t mean it stops the pain or anything, hell I don’t really think it is doing much for the
fatigue either. My Dr. says that my numbers are getting back up; I think she is hoping that my numbers would go up and everything would fall into place but I’m not that easy. Plus there is a national shortage on lipids so I haven’t been
getting them for the past 2 weeks. My cholesterol has dropped since then, and my Vitamin A is still undetectable and my
D is still low, I’m slightly anemic; but other than that my numbers are better. My Dr. also gave me 4 new prescriptions
to start off the year, and they seem to be helping too.


In family news, we got another dog! His name is Mack and he is really cute and very funny. He is 2 so he needs a lot
of play time, which has really helped me try to be more active. My doctor had said something about starting physical
therapy, but with flu season she decided I should try to do more at home to start off. I go out every other day to
throw a Frisbee and walk around the yard. He is really gentle with me so I’m positive he knows that I am sick.

My Dad has been in the hospital this week, so I canceled all of my IVs so that I could go in to see him. Unfortunately
driving back and forth 3 days a week is too much. I wasn’t able to go see him yesterday or today. Yesterday I was just
so tired, and today I can barely walk without pain medicine. I even had lunch delivered because I couldn’t stand. Dad
was very understanding and told me not to worry about it. He is a pretty private person so I won’t say what was wrong
but I will say that he is doing better, they may release him on Monday. I am so happy that he is doing better; I have a
tough time dealing when I am not the patient, LOL. I am a self admitted control freak!!

My colors are blush and bashful...

I was admitted to the hospital in the beginning of February and I was in for about 14 days. I was on IV antibiotic and met with quite a few doctors. I saw a neurologist, a neurogeneticist, 3 rheumatologists, nutritionist, opthamologist, geneticist, physio and occupational therapy (and of course my CF doc). I had a chest X- ray, MRI, swallow study, an ECHO, abdominal ultrasound, EMG/NCV, an eye full exam, and a q sweat. (Not to mention a ton of blood work.) So some of the tests came back 'off'. They are trying to fit me into a study to help with the pain, but I'm trying not to get my hopes up. Having a unique mitochondrial mutation leaves the doctors unsure of how to treat me; which means I'm just stuck in limbo waiting for someone to figure me out. So I suppose we will see what happens. On a positive note I went in with a 67% lung function and came out with 77%...

I woke up Monday with a stuffy nose, sore throat and chest congestion. I was hoping it was allergies, but that was just wishful thinking! I am still sick and I feel worse than I felt on Monday. So I put in a call to my doctor to let her know 17 days out of the hospital...and I'm sick. AGAIN. The last time this happened was in October and it lasted until this hospital visit. I'm frustrated, but not as frustrated as my husband. Sometimes I consider lying and telling him I feel fine...but then I realize that I need his support. I just wish he had more support. Sometimes I'm not sure his family understands his stress level (b/c of me), hell I'm not even sure he tells his friends. But Frank is a worrier, and to quote a line from Steel Magnolia's- "I never worry 'cause I always know you're worried enough for the both of us". That's Frank...worried enough for the both of us.

Anyhow...my family is going through some turmoil right now, nothing that I feel comfortable posting details about online. A few of my friends are sick right now too. I wish I could do something. For my family and friends; but physically...I just can't. At least not right now, hopefully if I get a new diagnosis from NIH that I'll get my energy and muscle control back, not to mention get rid of this constant ache.

We bought a ton of Girl Scout cookies so far, in an effort to show support. I'm sure I will have an extra butt cheek to show support at the end of this cookie sale! As for my daughter? She's made Honor Roll with Distinction; I am so proud of her. She is doing well, still cooking and loving it! If there is one thing in this world that I did right, it was raising Kate. It is the most important job in my life, and the thing I'm most proud of (being a Mom).

IV center; here I come!!!

So yesterday my hubby had his doctors appointment; we have the same doctor so he asked me to go with him. He has trouble with doctor speak...
We are sitting in the room and she comes in. She looks over at me and says, "I can't believe the IV center wants me to admit you." I nod and say "yep. I'm fine with being admitted...I feel like crap." Then my doctor explains that FMH and every hospital have viruses and bacteria that run wild and she doesn't want me exposed to it because my immune system is crap. I mean I know those bugs were there, I'm very aware of the crap floating around at the hospital. But it just never occurred to me that she would be afraid to admit me. I don't know why I didn't think of that reasoning. I feel so dumb! So it looks like I get to spend the next two weeks at home. Resting...Blah...how do I do that!?! LOL (she is in talks with the IV center to get me back in next week, but the isolation would be for my protection...)

Frank got his test results, a prescription, and then was off to Rose Hill for his CT scan. I'm not sure what happened but he went in happy and came out a bear! We think it was some sort of reaction to the contrast dye. Neither of us are sure, but that is the only thing we could think of. When we got home he worked on the website for a bit and then took a 3 hour nap. He was so upset that he was so tired. He wanted to work on Shot stuff all day since he had off to get his scan and see the doctor. But I made him take that nap, I was afraid he'd fall asleep at the computer!

Kate and her friends (Molly and Bethany) are in the other room playing Rock Band. It's nice to have them here; they are good kids. But don't tell them I called them kids. HA HA! I'm trying to convince them to be a chick band. LOL Molly is drumming and Kate is the guitar and Bethany is singing....they aren't half bad.

Tonight I am planning to make a beef roast for dinner. This will be my second attempt at a roast that Frank will like. He is not a beef person, unless it is ground up or chicken fried! He choked on a piece of steak years ago...and it scared him for life.

I'm off to rest...whatever that is...