Sunday, April 10
I guess Yardboy couldn't sleep either. He asked if I felt like cuddling. I declined, though I really would love to be held by him. I'm on edge, and I just don't think I can stand being touched right now.
This has been a crazy couple of weeks, and all of the days are beginning to run together. My brain is in a fog.
Tuesday afternoon I used my new nebulizer and albuterol. It worked for a couple of hours, then the wheezing came back. I decided to go to the ER.
I arrived at the ER around 7:00 and immediately got a chest x-ray. Thankfully, the images of my lungs were clear (they always are). I saw a very jerky ER doctor. I learned a valuable lesson. Don't expect to be taken seriously about an exacerbation of a chronic problem in the ER. He actually laughed when I explained that I had sinobronchitis. He said there was no such thing and it wasn't a "real" diagnosis. Then he gave me a long speech about how antibiotics don't work on sinus infections. I wasn't there to have him magically cure my longstanding sinus problems. I wanted help breathing. I left the ER after receiving IV steroids and two breathing treatments. I decided I could just as easily use my own nebulizer. I got to sleep around 3:00 am. What a long night.
I stayed in bed most of the day Wednesday and Yardboy stayed with me. He needed the rest almost as much as I did, since he stayed up most of the time I was as the hospital. I called my primary doc, the pulmonologist, and the ENT to tell them that I had been seen in the ER. Both offices gave me Friday appointments.
I spent Thursday in my big comfy living room chair. Since I couldn't do much of anything else, I decided to do my Continuing Education work for my nursing license renewal. I have to submit 24 hours of CE's by the end of the month, so the timing worked out fine. I got about half of it done on Thursday. Hooray for the internet!
For the last year, Yardboy and I have been trying to figure out what we can do to reduce the number of allergy triggers in our home. I got pillow covers and mattress covers, took the curtains out of my bedroom, bought a hepa-filter vacuum, use hepa-air filters, and even gave away our beloved kitty.
Since we can't afford to replace the carpet right now, we had the carpet cleaned Friday. It was a big undertaking to get all of our junk off of the floors, and Yardboy did most of that himself, since I don't have the energy or breath to do anything other than sit these days.
My mom drove over to pick up Baby B for the weekend. I miss that little monkey, but it has been good to rest and not have to chase a toddler. My older two kids have also been really great. I don't know, maybe Yardboy threatened them or something. I'm so grateful for all of them.
For my Friday appointment, my pulmo wasn't in the office, so saw a capable, but aloof ARNP. Again my chest x-ray was clear, but my lungs sounded really junky. I put on a good show for her with all kinds of gross lung noises. After consulting with one of the other Pulmos, she upped my dose of Advair, added Spiriva, told me to continue taking the horse-dose of oral prednisone for two more weeks, then get blood work done, and return in three weeks. She didn't say for sure, but thinks there is some kind of immune/infalmmation problem. DUH! So, more waiting, and more drugs, for now.
Later, the ENT was very nice. After we talked, he reviewed my sinus CT and scoped my sinuses (which triggered more wheezing). Then he offered to do sinus surgery to get all of the gunk. Wow! I didn't really expect that. I'm going to get another opinion from Shands before I let anyone do surgery on my face.
After a nap, I made it to Celebrate Recovery. I felt like crap and honestly admitted it those who asked how I was doing. I shaked through dinner, sat silently during worship, listened to a friend who needed to talk during Large Group, and was prayed for by friends during Solid Rock.
I'm really working on not isolating myself, as I tend to do when I am sick or hurting. I feel very whiny, but everyone has been very kind. Being open about how I'm doing is helping to keep my head above water.
Yesterday was my birthday. So many people wished me well on Facebook, and a few called too. Yardboy made brunch and picked some dark pink heirloom roses from our yard for me. Little Man and I made a trip to Wal-Mart where I bought a new coffee pot, saline spray, a rug to go under Yardboy's drums (which now live in our dinning room). As s treats for myself, I got my eyebrows waxed and bought Big Bang Theory Season One (hilarious). Little Man got a remote control car for himself with his own money.
After a nebulizer treatment, a short, shaky nap, and a bath, we went to some friends' home for pizza. We stopped by the grocery store and picked up key lime pie and mango key lime pie. Mmmm. I felt like trash the whole time we were there, but figured I may as well be among friends and feel bad, that be home alone and feel bad. Though all I did was sit, it was good to get out of my head and laugh, if only a little.
Baby B will be back today. I'm praying to have the energy and breath to give her what she needs. Right now it looks like we will be sitting in the living room watching lots of cartoons this week.
On Monday, I'll go have an imaging study done to see if I have food and drink getting into my sinuses.
Time to try again at sleep. Hopefully my lungs agree.
Tuesday, April 5
When I got to my primary, the nurse immediately gave me a breathing treatment which made a big difference in how I was feeling. I explained that I had been to Urgent Care the night before, that my pulmonologist couldn't see me, and that I needed a stronger prednisone script than the one prescribed at Urgent Care. My doctor ordered a test to check for laringopharangeal reflux (food and drink refluxing into the sinuses), wrote a script for 18 days worth of prednisone (ugh!), and ordered a home nebulizer. It seems that my doctor is really starting to listen to me and is trying to put the puzzle pieces together.
When my visit was over, I got all of my records (almost 300 pages) and then got a cd with the images from my head CT from last week. The CT images are really cool!
After picking up the kids from school, I stopped by the drug store and got my horse-dose of prednisone and albuterol that goes in the nebulizer.
I did finally hear back from the pulmonology nurse at 5:15 pm. I'm afraid I was not very nice when she called. She didn't even check her messages until office hours were over. She offered me an appointment with the ARNP for later in the week, but I declined. I'm so glad I called my primary instead of trusting her to call me back.
Today I need to make a call regarding the nebulizer. I hope I can get it today. Friday I'll go to the ENT and then I'll go to the test for reflux on Monday. It will be a few weeks before I hear from Shands.
I think I go do a sinus saline rinse and take some more prednisone now.
Friday, April 1
Yardboy was really helpful. Even though he had a full and stressful day, he took time off to pick up Tater and Little Man. I was in no shape for driving. Around 6:00 that evening, Yardboy stopped by the drug store to get my new med, but they had no record of it being called in.
That was the last straw! I managed to hold off the tears until after the kids were in bed. It is so frustrating to have something wrong, have excellent insurance, and still not get the help needed. I cried while Yardboy listened and then I called my brother, Cabbage Head, a third year medical student, to see if he had any ideas. He got to hear me cry too.
After talking to my guys, I had a plan. I decided to get ALL of my records from ALL of my specialists and take them to my primary doc. I planned to share my frustrations with him and ask him to review my records and try to put the puzzle pieces together.
I called my doctor for an appointment first thing Thursday morning and then set out to get as many of my records in hand as possible. Before arriving at the appointment, I managed to get my pulmonology and emergency room records. I also requested my urgent care records, but I was told that it takes three to five days to get those.
I didn't get a warm reception from my doctor's LPN. She is usually very bubbly and friendly, but seemed really agitated to have to deal with me again. However, my doc was kind. He spent an hour and twenty minutes with me, while I poured tears of frustration. Poor guy. I'm sure I didn't make his day great.
There was very little resolution to my concerns, but he did listen to me, and seemed to genuinely care. He personally sent my new prescription to the pharmacy andmade yet another referral. This time he referred me to Shands.
The problem lies in our medical system. General Practitioners can't afford to take phone calls, because they can't bill for them. GP's also don't make enough to hire a RN to triage calls for them either. So, they end up having a Medical Assistant or LPN play messenger. The GP is often the only one in the office that has enough clinical knowledge to actually understand and help. He can't deligate any decision making. He has to do it all himself.
Oddly enough, in all of my calls, my nurse never offered an appointment with my doc. I guess I should have specifically asked for an appointment instead of saying, "What do I need to do?" Next time I'll skip the nurse and just make an office visit. It seems like a total waste of resources, but I guess that is what it takes to get my questions answered.
Toddlers engage in parallel play. They will play side by side, doing the same activity, but not actually communicating or playing WITH each other. I feel that is what my primary doc and specialist are doing. They do their little parts and send in reports (sometimes, if they aren't afraid of HIPPA) to the primary doc. Then, the primary doc sometimes reads the reports. They never actually have conversations. I believe that my doctors could figure out a solution if they could all sit down together and talk it out. My doctor said that just never happens. Are they all overgrown toddlers?
On Friday, my mom came over to spend the day with me. We went to a bookstore, to lunch, and back home. She watched Baby B while I napped and even cleaned my kitchen. It was wonderful to be cared for. I love my mama.
I made it to Celebrate Recovery and actually lasted until 9:45, or so. I enjoyed hearing Johnny Baker's pre-recorded testimony. Small Group was good and talking with friends at Solid Rock was even better. When I coughed, people looked at me with fear and disgust. Admittedly, it does sound pretty horrible.
I spent most of the weekend piddling around the house. On Saturday, we watched Legends of the Guardians (great movie) with the kids, then I took a long nap. Yardboy and I took the curtains out of our bedroom, washed all of the bed linens, put away winter clothes, and loaded the back of my car with clothes to donate. I ran out of steam and breath when all of that was done, so I sat on the couch for the rest of the day. Around 8:30 pm (still in my Sponge Bob pj pants) I went to the gas station near our house to return Legends of the Guardians and pick up Inception (maybe I dreamed that part). I'm still wondering about the ending...
Sunday morning was almost as relaxed as Saturday morning. I made almond butter cinnamon toast and the kids gobbled it up. Yardboy headed to church to drum for the 11:00 service while the kids and I headed to Wal-Mart. We got allergen pillow covers for my bed, organic veggie seeds, one of those up-side-down tomato planters, and a pizza to take home and bake for lunch. The kids were whiny and fought the whole time we were in the store. Grrr.
After lunch, I took a much-needed nap and we got ready to go to our church's new 5:00 pm service. Yardboy had to drum at it too. I really like the idea of going in the evening rather than in the morning!
When we were at church, I realized just how sick I was. I tried to sing, but just didn't have the breath. I used my rescue inhaler four times in two hours (yes, that was more than I'm supposed to take). I made it through the service (which was beautiful and will be the subject of a later post) and asked Yardboy to get the kids from Sunday School.
Once we got loaded up, I told Yardboy that I needed to go to urgent care to get a breathing treatment. We picked up dinner at Wendy's and headed home. After dinner I drove to urgent care.
My oxygen saturation was great at 98-99%, but I was doing a lot of wheezing. The ARNP ordered a nebulizer treatment and wrote a prescription for oral prednisone. She said to go to the emergency room if my symptoms got bad again. Two and a half hours later I returned home, breathing a lot better, but still not great.
I slept reasonably well and called my pulmonologist as soon as his office opened this morning. I'm still waiting for a call back from his nurse. I asked for an appointment. We will see if they give me one. I think I'll call my primary doc and make an appointment for this afternoon, just in case.
If I'm up to it today, I plan to go grocery shopping and drop by my allergist's office to order Tater's shots and discuss my shots (I can't take them when I'm wheezing and have fallen behind).
Keep me in your prayers.