Well just wanted to post an update on how I've been doing since being out of the hospital. I received my 3rd Remicade infusion the day after coming home from the hospital (3 weeks ago today). The infusion was on Monday, and I worked my normal schedule that week of Tuesday through Saturday and was totally fine! I expected it to be a long hard week, but I actually did pretty well. The next Monday I was able to help at Day Camp with my Scouts for 5 hours, and then Chris and I left the next Thursday for a little vacation. We went camping in the Tetons with his family. We went to Yellowstone one day and did lots of other fun things. Chris drove back to Spokane on Sunday, and I went to Burley and stayed with my mom until Wednesday, and then flew home. The whole time I felt really well. I couldn't really believe it. It was so nice to have energy and not have any pain.
Here we are in Yellowstone. We had to go down over 300 stairs to get here...I was pretty proud of myself that I made it back up.
I remember when we went camping with my family in July, I had not been doing well leading up the trip, and while we were camping it was hard to have energy to help with the cooking, cleaning, etc. If I did something (such as ride my bike around, climb a rock, go canoeing, etc) then I was worn out. Especially the last morning when we were packing up to go home, I felt so crummy and helpless watching everyone work. I actually went and laid down in my mom's tent (which hadn't been put away yet) for a few minutes. But this camping trip I felt so good and had lots of energy.
Saturday I started to not feel so good again, but it wasn't too bad. Today I woke up with stomach pain too. But I have read other people say that it takes a few months for it to fully get into your system. The doctor told me to give it 6 months to work. My next infusion isn't until September 23, and I wish it was sooner, haha.
One thing that has been bothering me is my rheumatoid arthritis in my hands. A few months ago I got steroid shots in all my fingers. I had two fingers done at a time. When we were camping I noticed my fingers starting to hurt again. Then when I got to my mom's house I noticed that the first two fingers I got shots in were really swollen. They have just been getting worse. I couldn't get an appointment with the rheumatologist until September 12. I don't know if I can wait that long, so I might call again and see if there is any way she can see me sooner. I wake up in the middle of the night and can hardly move them from the pain and stiffness. I can't open lids or packages by myself, and if I bump my fingers on anything, I feel an instant shooting pain that makes me want to scream. I was really hoping the Remicade would help the arthritis too, but maybe it just needs more time.
Here you can see which two fingers are swollen.
Some of you might remember that I had surgery on my sinuses a little over 2 years ago. It helped me to be able to breathe better, and I have only had one sinus infection since then, when I used to get about 3-4 a year. Well, since we moved to Spokane, I have felt like things have been worse again. Since I have met my out of pocket for my insurance, I decided to go see an ENT. I told him about all the problems I have had all my life. I told him about the allergy tests I had when I was 11 or 12 years old (which showed I was allergic to dust mites, a tree, and a weed. I told him how I ALWAYS have drainage going to down my throat, and have to clear it by making a kind of disgusting noise, otherwise I feel like I am drowning in my own secretions. Sometimes I wake up in the night coughing and cannot breath because of so much stuff in my throat. And I have a chronic cough. (My senior year of High School one of my teachers said to me, "Jill you have had that cough all year." I answered, "I have had this cough my whole life!." I told him that I have all these problems year round. I also told him that I have tried everything. I take Claritan and Sudafed every day. I use a prescription nasal spray every day. I use a humidifier every night. I have tried sinus rinses, etc. I also diffuse essential oils at night that are supposed to help you breathe better. So he put a camera up my nose, which was kind of uncomfortable, and looked around.
He didn't have the records from my previous ENT yet to know exactly what was done during the surgery, so he wanted to see himself. After we had talked about everything and he got done with the scope, he told me that I have about every problem that I could have. Go figure. He said he could tell I have chronic sinusitis, but there was no infection currently present. He said I most likely have allergies, but I just can't tell on top of everything else. He also said that I most likely have esophageal/laryngeal reflux. I get heartburn once every 4-6 weeks or so and most of the time it isn't bad enough to take anything, but every now and then I take Tums if it doesn't go away. He said what I think is drainage coming from my sinuses, is actually stuff coming back up my esophagus. That causes the feeling of drowning, and gross noise and clearing of my throat that I am constantly doing. This makes sense to me because lots of time when I swallow I have an acidic taste in my mouth. The last thing he said was he could tell from looking through the camera, that I had something "reduced" during my surgery, that probably should have been removed all together. Without going into lots of gross detail, it causes me to cough up hard green remnants of drainage every now and then. It is very rare that this happens, but he says another surgery to fix that might also help me feel better (but this would be way in the future, if we did it at all, after we have worked on everything else).
So the plan is I am going to have a CT scan and allergy tests done in a couple weeks. They are going to test for everything, even food, which I didn't have done when I got tested in 6th grade. Then I am meeting with the doctor right after to talk about the results. I also started taking Prevacid for the reflux. this helps the symptoms, but not the cause-a sphincter is not working properly. There is surgery people get to stop reflux, because chronic reflux can lead to esophageal cancer. But I'm sticking with medication for now. I am to continue the nasal spray and humidifier, sudafed and claritan, and start using the sinus rinse twice a day. Previously I just did it when I had a bad cold, sinus infection, or was really stuffed up. So hopefully these things work and I can start to feel better. I guess I have gotten used to ALWAYS having a sinus headache, but it would be nice if I didn't always have to deal with that too.
Sorry for the long post...like I have said before, I write so much detail for myself, so that I can go back and read posts and remember everything that happens. I will keep updating on the progress with the Remicade. :)
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