I'm having a hard time believing it has been another week all ready. Frankly, I am always looking for interesting things to blog about but I don't know that I have anything. But that doesn't mean I can't give an update.
I made it through another week of work. My boss was gone most the week so I was pretty busy covering for him and picking up my stuff. I also found stuff that didn't happen while I was gone so I've been working to clean that stuff up. I did work more than 8 hours a day all week long. Made me pretty tired but I am feeling better this week then last.
I was really working on being social again. I had a luncheon with one of my new craft friends, Kaylyn. You might remember that Kaylyn is the mom of the blogger I've been following for a few years. I've gone to a few of her craft classes and she asked if I would meet her for lunch. I learned a lot about her family and her life. I think we have quite a bit in common even though we are very different. She does inspire me with her "pick herself up and keep going" attitude. She isn't doing classes anymore but I think we will continue to keep in touch.
I also co-hostessed book club Friday evening with my good friend Stacy. I can't tell you how sweet Stacy is. Because I have lower stamina and still can't carry or lift, she got all the food together and I just showed up and helped prep it. I stayed and helped her clean up a little bit too. I was very tired when the night was over when I was finally in my bed. But I really enjoyed it.
Saturday, I met my long time friend Bev and her son Jaxon for breakfast. We've not seen each other for over a year! We spent 2.5 hours catching up and we probably could have kept going had our butts not flat got tired sitting there so long.
Sunday was a Metho day. I planned to sleep in but I woke up wondering if I had a urinary tract infection. It is not uncommon after a hysterectomy. But also, it can take awhile for your bladder to adjust after surgery (a uterus holds your bladder in place). In fact, the internet said a year! And many people continue to have problems after that. So I had to get up, shower, and head to the weekend clinic. They couldn't tell for sure if I did or not. It speedy test was inconclusive. So I am waiting for the culture and will know Wednesday. Interesting enough, I 'm not feeling as confident that is what is going on today as I did yesterday. I do not want to take the antibiotics unless I need because it often causes more problems then it fixes. So I am waiting....unless I am doubled over and confident without the culture which I am not....yet.
Muscle wise, I am feeling a little better. I had my CK done last week. It came back at 196 so it back in the normal range which is excellent. I'm anxious to try to get back to the gym again but need cleared after the surgery.
My labs came back from Johns Hopkins. It came back all negative for the antibodies. So that further indicates their suspicions that I have Inclusional Body Myositis (IBM). I'm not convinced because IBM doesn't usually respond to the medications which my Myositis does. But it would also explain why I can't build muscle or get feeling better. IBM is about as bad as it can get from a Myositis perspective. They've called it "slow progressive Muscular Dystrophy". I would like to confirm if that is what I have but there isn't any solid diagnostic tool. There is a new lab test you can get to help with the determination but it can only be read at a hospital in MO. So I have to get the lab drawn here and find a hospital to send it over night to MO with the proper paperwork. Of course, I have to pay for this out of pocket. I think my insurance is pretty much done with allowing all these out of network tests. I get pretty discouraged with each indicator coming back more sure about the IBM. It would really suck and be super depressing because there isn't much you can do about it to improve. The prognosis isn't good. But it would help me to know if that is where I am headed. Most likely, I would be in a wheelchair in the next 10 years. That is a totally different lifestyle then I have in my head now and so I would be willing to make some decisions that would facilitate that lifestyle more if necessary. But you know me, I don't give in to prognosis and I will fight and prove them wrong as much as possible. But I have to be realistic.
This week, I have a follow up with my regular Oncologist, Dr. L and with my Gyno/Oncologist Dr. D. This will be my first follow up with Dr. D since the surgery. I'm anxious to get answers to my questions (HRT, bladder issues, gym readiness). I also look forward to talking to Dr. L. I don't expect any issues with that appointment. I also need to get my mammogram scheduled. Have you done yours in the last 12 months? If not, this is a great time to do it!
Philip is doing good. He is in the home stretch of high school. He is so ready to be done. I am trying to keep him on track. He is lucky he is so smart. We are headed to ASU in a few weeks for orientation and signing up for classes!! He is going to be gone before I know it!!
All things are good here. Hanging in there and keep ticking off my list of things to do. I keep getting feeling better post surgery which is great. I can't wait to be back to my normal.
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