My life is to make everything around me beautiful.

Wednesday, March 25, 2015

My Life Has Changed Dramatically

Yes, it's been a while since I've posted but there are reasons. I doubt I'll be a high-volume blogger ever again but I hope to post a few once in a while perhaps. I've had to explain to so many relatives and friends what happened that I wrote a Word document to just send around instead of trying to tell several different people. Here is that explanation and that's why the font and spacing are askew. I'm NOT typing this story again in here so it'll just have to be "off":

In November I started coughing, a gut wrenching cough that just wouldn’t let up. I went to our local quickcare for help finally after realizing it wouldn’t give up. I went there twice and then finally made an appointment with my doctor with no satisfaction either. There were x-rays taken and 3 rounds of antibiotics with no success at all. Friends kept telling me to do some “natural” things and I did that, also, to no avail.

Then one day I had a friend drop by and asked how my oxygen levels were. They’ve been low whenever I had my vitals taken at the doctor’s office or quickcare. So she loaned me her oximeter and when she put it on my oxygen was 87. Very low.

I called my doctor and she said if it gets below 90 to go to ER as they are equipped to handle it better than her office.

Well, last Monday at 10 am, I decided to do as she advised as I was still coughing although the cough had gotten somewhat better, not good, but better.

When I walked in to the ER they took me in immediately. Started administering oxygen. At one point I had to go to the bathroom, of course assisted by an aide. When I came out she put the oximeter back on my finger and noticed my fingernails were blue as well as my feet.

The doctor came in and said they were going to admit me. I was stunned. How did we go from “just give me some oxygen” to “do you have a directive”? Huh?! Then they told me I may be there for 3 days. Huh?!

So they talked about taking me up to the 3rd floor for admitting. As we wheeled out of the ER and started NOT heading toward the elevators AND them mentioning room 199, I started thinking “room 199 on a third floor? Then they just kept wheeling my bed to a dark area: dimmed lights, more silence than usual and told me I was in ICU.

I was immediately punctured with needles in both hands, inside elbows. Shots in my stomach twice. Needles not just in veins but arteries in my hands. They needed “pure” blood for some tests. Then came the monitoring cables, 5 in all hooked up to heart and lungs. So actually I was hooked up to 8 different things.

My Monday was taking an altogether different tack than I thought!

They made me pee in a device to measure my urine output. The shot in the stomach induced peeing. I was hooked up to 8 different things and starting to get a bit anxious as one can imagine in this situation. Cat scan later. Xrays later.

My hubby was there the whole time. I have a young friend [I’m in my seventies; she’s 41] I call for “emergencies” (fully loaded Coke, meaning sugar and caffeine, which I usually avoid!) brought me a large Coke and at 7 pm she went out for Subways for all of us. Then our bishop came to visit after he got off work that evening.

I take Ambien and have for 20 years as a doctor prescribed it when we moved to Idaho about then and he said he’s taken it for years. I’ve found it safe. I only take it at night of course. I can nap just fine.

Well, that night instead of Ambien the hospital pharmacy dispensed something called Sonata, better for “over 65 patients”. I took it and didn’t sleep a wink all night. I was really frosted and “wired” at that point because I longed for Morpheus.


Here’s how pathetic I was that night.


I had a cheap clock on the wall at the foot of my bed. I counted every single tick on that clock for hours, making sure it was accurate. It was. Five clicks to each numeral.

I then started playing with the “monitor” I was hooked up to displaying all my vitals. I made sure the oxygen was up and the heart beat was fine AND the blood pressure was good. It was.

Then I started playing games with the one at the bottom that I could “regulate”. I’d chuckle, bark, growl, laugh, guffaw, snort and any other noise I was adept at making and see how that line changed, making little wormy waves or squiggly waves. I did that ALL night.

I didn’t sleep from 10 am Monday morning when I awoke to 10 pm Tuesday when they let me go home from the hospital that afternoon at about noon. I was wide-eyed and bushy-tailed as they say.

They set me up with a pulmonologist at the hospital and he made me an appointment with his office for Friday. He said my lungs were scarred. Scarred? From what? He thought either from second hand smoking or GERD. I grew up with smoking parents and hubby smoked when we married but he gave it up 30-35 years ago. I never went beyond the cigarette in high school that convinced me smoking was not for me. So essentially I was never a smoker. GERD? I had some episodes years ago but after taking Nexium that disappeared and I was able to discontinue that with no problems at all.

I am now on oxygen permanently. I am connected to a 60’ cannula  that hooks up to a liquid oxygen tank in one room. I can go anywhere in my house on that tether. I have 2 different smaller containers, one that weight 7 pounds and another one weighing about 3 pounds. More conducive to shopping as either can go into a shopping cart. All of this is supplied to me by our local Norco store. That’s a store for devices and air such as this and for me it’s all paid for. I don’t need to pay for anything. They check in weekly or more to see how my liquid oxygen tank is doing and come fill it 24/7/365. This runs around $400 a pop! Plus I am now qualified for a handicapped sticker. My pulmonologist said I qualify for it more than most of the people out there with a placard. I guess I am not “special”! This cost is because my hubby served his country and is a retired Marine and it is also a tithing blessing. We’re full tithe payers in our church and have seen miracles from being so. I cannot tell you how blessed we are doing this.



Diagnosis:

Lupus: barely there. That’s when the white  blood cells go crazy and attack other tissues.

Asthma: some enlarged passages and some blocked.

High protein: may be caused by bone marrow. 

Bone marrow: a bit off, don’t know why.

I’ll be on oxygen permanently probably.



I get inhalers now because as I used them in the doctor’s office I was getting more oxygen. So it helps me to breath better, more efficient for oxygen to get into system.

Just let me just say here that up until November last year I was NOT having any problems whatsoever. That’s why all this is such a shock. One day I’m fine, next day they’re asking for Directives!

An MRI scheduled for next week. Much work to do to find out why the scarring has occurred. I’ve never had anything that would make one worry about lungs.

My daughter asked me the other night if I ever thought about lungs going bad. I said, “There isn’t a person in the world that hasn’t thought about heart disease as they age, but lungs, NEVER! That’s why this is such a shock to me and my family. Hopefully we’ll know more after more tests.

The cannula is a bit itchy around my nose. I still consider myself one of the luckiest women in the world. I have wealth beyond measure. I’ve never, ever said “why me?” I have asked why, but never “why me”. I’ll endure and count the ways I am so blessed in this life. Oh yeah, I’ll grieve, cry and then get on with it. It’s still a shock when so unexpected but I’m still the liveliest woman you’ve ever met. Just tethered to a tube for the rest of my life, but I’ve already scheduled for our next lunch with th’ girls. This will not get me down.
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Just before this happened my hubby and I were trying our best to scale down by getting rid of a lot of things. This was a massive undertaking. I emptied my craft room of 99% of the craft supplies by giving them to a sweet friend. I kept very little. But now our craft/sewing room is an extra bedroom for visitors and my hubby's office is now a room for food storage and our sewing machine is in there along with some minor exercise equipment. And we are now sharing an office together. I just need room for my kids, grandkids and great granddaughter. And that leads me to another announcement: We're having another great grandchild! This has excited us to no end. I've been after my granddaughter to give us more. Some people might say that's a private matter, but I don't care. She'll listen to me more than any other and I kept after her. They're excited also for a third child. I'm sure my daughter is excited to have 3 grandchildren now also.
I kept my artist brushes but put them up on this bookcase for a bit of show and got rid of 40-50 decorating books by having a friend take them to my church and we'll be giving them away on a "help-yourself" table in a month or so. These ladies are going to be delighted!


This is my liquid oxygen tank. It's about the size of a small water softener but it contains enough air for at least a week as I haven't had the regular delivery of oxygen yet. This is all new to us. I can go anywhere in my house with that long tube, cannula.


This is the first "small" one they gave me. It weighs 7 pounds and that's quite heavy for a weakling like me, so I now have one that is 3 pounds which makes it much easier to take shopping or lunch.


And my posts wouldn't be complete without some gorgeous images to view. I love this setting with a fireplace and 2 comfy chairs flanking it. Unfortunately, I can not be around anyone who smokes or a flame or I'd be a walking torch!


Another setting I adore. Just comfy.


All the things I adore. Roses, pink house with gingerbread trim and a delightful window.


If I knew where to buy this I'd have it in a heartbeat. I love the colors.


Another delightful studio/craft room.


While I love these beautiful tables they are a bit flimsy for actual eating. And I don't need anything else for show.


While in the hospital they brought me some delicious oranges cut across and peeled, like a wagon wheel. I love the beauty of them and they were delicious, which set me on a quest for some oranges. Costco had some called Cara Cara. They're pink and the sweetest orange I've ever had. Just luscious and I recommend you try finding them at your local stores.


Simply more eye candy. We all love roses and who can resist that darling coffee pot.


I have a love affair with chandeliers and lampshades for them.


Elegant in a rustic sort of way.


And you all know how I feel about froufrou in this house. I hang things like this on door knobs with drops of fragrance to have my home smell good. It always smells delightful!


I am NOT fond of Indian food. I tried it once when a friend, who was a food critic for our local paper in California, took us to review an Indian restaurant. Nothing and I mean nothing that night was lower than flaming on my tongue. I don't like spicy foods in anyway. I thought the bread was safe but even that was ridiculously spicy. I drank 7 bottles of Seven-Up that night and vowed to never, ever eat Indian again! My daughter also went to an Indian restaurant in that town and same area and she threw up for hours. She spent the night next to the toilet and also vowed to never, ever again eat Indian! When she told us the story my hubby and I laughed our heads off. I understood, hubby didn't. Just laughed because it was so hilariously funny.
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This font is regular Georgia and not the one I usually have but after this post it will return to regular Papyrus, which is my fondest font. But there is so much cut and paste on here I was having trouble and that's the last thing I need to focus on now.