I have been off of all of the antibiotics and just took my last dose of steroids today. I wish I could say that I felt great but I just don’t. There was three days of overlap of the IV zosyn, IV levofloxacin, IV vancomycin that I really felt pretty decent. Since that has stopped I can feel a steady decline.
I also am off steroids and will begin restricting my daily maintenance medications as well for my upcoming pulmonary tests at Mayo. I can feel the pain again when taking in a breath. I think at night that I must breathe very shallow to avoid pain because that first breath that I take in upon waking is a killer.
I am just praying that I can get some better direction on my lungs while we are at Mayo. I have had so many chest X-rays and ct scans this past month and a half and no one can agree on what we are looking at. Multiple radiologists and multiple drs and although there is a good idea of what is going on, there is still not a definitive answer.
I am a planner. I need an answer. I need to be able to deal with whatever I am facing and move forward. The waiting and wondering and googling are not good for me. I will post as I can when I am away and give updates as I can as well. I have some posts already written that I will schedule to post on certain days, but I also want to spend this time making memories with my boys.
I have to say that over the last year that eating has definitely become way easier than it was in the beginning. I no longer have to get up in the middle of eating to vomit, which I think is a huge plus!
But as I sit here and write this I have the horrible pain and pressure in my chest from eating too much, too fast. Will I ever learn???? It doesn’t seem like it should be that hard but I still struggle with that aspect of eating and it is 100% my fault. I eat something yummy and my old habits just take over and I want to eat as much as I possibly can. On the bright side it only happens on occasion now, so maybe I am actually learning.
Nausea seems to be the ever constant in my life. Always feeling that I am on the verge of vomiting. It is such a nasty feeling and I was really hoping that over time it would subside but it seems to be a constant.
Then I feel like this and remember once again why I no longer enjoy eating. I also seem to be having more bile reflux lately which is also very unpleasant. Kind of like a blow torch scorching my esophagus and the back of my throat.
I now sleep on this very uncomfortable wedge to keep me propped up in bed to try to keep everything down. It does help somewhat, but wow I would just love to lay down and sleep flat on my bed in any position that I want. Laying on my left side hurts because it puts pressure on the plates and screws that are in my ribs. Laying on my other side is no better as I have to wedge pillows between my legs to keep my knees from bruising each other. And my butt hurts…my tailbone sticks out so far that even laying in my soft bed makes it ache. I also had a pretty severe bed sore there when I was in the hospital for so long and I think that also has made it more sensitive.
I could use some good vibes, prayers, whatever your thing is this week. This is the first time that I will travel to Mayo without my husband or my mom. It will just be me and my two boys. They are 17 and 18, quite capable of helping me drive and taking care of me if needed. I am looking forward to the time spent with them and am going to try and make a vacation of it after we get through my two days of tests and appointments.
Worry….it changes absolutely nothing, past, present or future. Yet it is so hard to NOT worry. I pray and try to give all my struggles to God, but I still worry. I hate letting something have such an effect on me that I have no control of, but I still lack the ability to let some of these things go.
I have learned a lot of lessons throughout my life to this point. When things are that there very worst and you do not possibly think they can get worse, they can and sometimes do. I also know that even when I have been sure things will not ever get any better they have. Life is truly a series of mountains and valleys. Sometimes I am at the top and sometimes at the very bottom, usually somewhere in between.
I travel back to Mayo Clinic this week and historically these visits are full of information both good and bad. It is the bad that I worry about. My lungs are in the worst shape that they have ever been in. Asthma, COPD, weeks spent on a ventilator, infections, chest tubes, more infections, surgery have all worsened the condition of my already not so healthy lungs. I have had pneumonia, I think 7 times in the last year. My latest chest X-ray are showing increasing fibrosis (scarring) and my most recent pulmonary function test showed a pretty good decline in my lung function as well. This is always perplexing to me as my O2 saturation levels stay high enough to keep me off of oxygen despite the decline. I know that realistically an oxygen tank will become an accessory of mine in the future but I am hoping to put that off as long as possible.
So I sit here and try to figure out why I can’t just let it go and enjoy today…is it because I have appointments this week? I don’t know. I do very well for periods of time living for each day and each moment and finding gratitude in almost everything. Then I fall into this funk of worrying and wondering what the future has in store for me and how long will I get to live on this earth. Why do I have to keep going through all of these trials.
I have to remember that it is not up to me. I could get hit by a car tomorrow and lose my life. We are never promised tomorrow and that is what I have to focus on to get me through these times of struggle. I know that whatever news that I receive that I am fortunate that I will have my husband and all of my family and friends to help me tackle whatever challenges arise.
Finally off of all of the IV antibiotics and steroids and tapering off of the oral steroids. Mybreathing still sucks but it is pretty much my baseline. I got a new diagnosis of pulmonary fibrosis. Everything that I have read on that is not good, so I am just trying to not think about it and see what pulmonology has to say when we are at Mayo Clinic next week.
While on steroids it naturally raises blood glucose levels, so I have been very lucky to have very few hypoglycemia and dumping syndrome issues this last month. That all came to a crashing halt last night and through out the day today. I just want one day, one whole day that I do not feel like crap in one way or another.
It seems lately that my new normal is battling one thing and then another…I know that this is a lot better than a lot of others have it, some days are just harder than others. I am also bummed as Dale and I were going to have “date night” tonight and instead it is once again him and the kids taking care of me and making sure that I am ok. I appreciate it so much but was really looking forward to going out and spending some time with Dale. Maybe tomorrow night….
Not a lot else going on. My fibromyalgia is flaring from the heat, the taper off the steroids and probably stress. Just feeling a little overwhelmed with life the last few days and need to get out of this funk that I am in. I only have to look back a year to see how far I have come and that needs to be my focus right now.