Health
I had another SAIL test so the government can still cover my oxygen supplies. Just made the requirements which is kind of weird. My O2 sat levels stayed reasonably high even though I felt like I was completely out of breath and the nurse said I was a bit gray. I did dip down in numbers just barely enough for the SAIL to go through so don't have to worry about coming up with the money for my oxygen.
I found an awesome website for people like me - Inspire.com has support groups for all kinds of illnesses including NSIP. It is so nice to be able to talk to people who share the same problems. My family and friends are wonderful and I'm sure they would be there for me in a heartbeat but they don't know this disease. Part of that problem is that I don't want to burden them with the fact that this disease will either result in my eventually needing a lung transplant or death and not a really pleasant road to either. A prognosis timeline is on my list of questions for the Dr.
My breathlessness seems to have increased since November. I have some days better than others but often need the oxygen to perform minor tasks like doing the dishes. Housework is something I can only do in short bouts (i.e. sweep one room only) before needing a break. I've started coughing again, this time the coughs aren't really dry but no sputum comes up although it is definitely there.
I'm hoping to see the respirologist again shortly after I get back from Mexico so we can go through all my questions. This time I'm going to drag my sister with me so I'll have a spare set of ears and a brain that won't go foggy. My brain definitely fogged up last time I saw him - he mentioned the lung transplant and I basically stopped listening as I tried to absorb what this meant.
Believe it or not, I am still having twinges of pain in the biopsy site! Not enough for pain medication but little reminders that I had the surgery. The surgeon had said he may have brushed a nerve when he went in and from what I understand, nerves take a long time to heal. It's been 4 months today since I had the surgery!
Mexico
I'm almost all packed, all arrangements have been made, forms filled out with the i's dotted and t's crossed. A few last minute things to throw into my suitcase and I'm ready to go!
Kayla will be staying with my sister and Majik with another sister - both in MJ which will be handy for both drop off and collecting when I come home.
I am having mixed emotions about this trip. For the most part, I'm looking forward to enjoying the sun and surf (even though I have no plans on actually entering said surf) but I have a nagging fear of going alone with this disease hanging over my head. I really wish I could have found someone to come with me for at least the first week but everyone else has other things on their agenda. Oh well, I'm sure I'll be just fine - I just need to convince myself of that. I leave home for my sister's in a couple of days, spend a day with her and getting any last minute shopping (and a hair cut) done. Then it is off to 2 weeks in the sun!
I think the biggest hold-backs to me thoroughly looking forward to the trip are hauling the oxygen machine with me through the airport and not being able to navigate the airports without running out of air. For my time at the resort, I have the thought that I will be able to use the oxygen only once in a while. I may be deluding myself but in the past I have noted that I breathe easier when I'm at the ocean, whether on a cruise or near the ocean. I guess the proof will be in the pudding!
I have an excursion booked to go sightseeing and shopping "You will start at 7:30 am, taking the highway along the coast of the Sea of Cortez, driving through mountain towns and amazing desert landscapes. You will make quick visit to little towns for photographs Miraflores, Los Barrlies, Santiago, San Bartolo and El Triufo. At La Paz City, you will be visiting the cathedral and do some shopping. You will visit an amazing beach called Coromuel for taking photographs. Then you will visit the famous La Paz Malecon where you will stop to a restaurant to taste Mexican flavors. On the way back you will be stopping at Todos Santos town, where the famous Hotel California is located." Sounds like a great time, I just hope I can get my arse moving in time to meet the bus! Anyone who knows me knows how much I dislike mornings! The whole tour lasts for 12 hours so I will have to be careful how much I use the oxygen machine as it only lasts for 8 hours maximum. I shouldn't need it when sitting on the bus or while at lunch so I should be OK. The best part of this excursion? I got it for only $25 after using a coupon from the travel agent.
The majority of the rest of the vacation will be spent on the beach with book or crochet in hand and a nice cold drink within easy reach. Life will be tough!! Hopefully I won't come back red as a cooked lobster but I am definitely hoping for a nice golden brown.
Next time I post, I'll let you know how everything went.
Live for yourself, Laugh at yourself, Love yourself.
