I've had a very long, hard week after feeling better for two weeks. Just goes to show you that secondary hyperparathyroid disease never goes away!

Well, after a very good two weeks after my treatment began for my hyperparathyroidism I had a set back. Why????? I have no idea really. When you have this disease and something goes wrong with you as it has me this week you don't know for sure if it's the SHPT (secondary hyperparathyroidism) or did you just catch a bug that's going around. My daughter, Rachel, and I got back from a good week  at the mountains in Pigeon Forge, Tennessee last Sunday and I felt pretty good, unbelievable actually. I even went to church on Sunday night after driving in that day from Pigeon Forge. I thought things were just going to be a bed of roses now. WRONG! I woke up not feeling good at all on Monday but not sure why. I was very nauseated had really bad diarrhea and just was weak all over. I had a doctor's appointment on Tuesday with my PC doctor in Enterprise and I went by myself (for the first time in a very long time!) and I did okay, just not great. I felt so weak and sluggish. I actually had two doctors appointments on Tuesday, one to see my surgeon that put in my Groshong  port because the stitches had come out and had to be redone. Then I had to see my PC doctor later that day for the UTI problem. I found a place to park my car and just went to sleep I was so tired. I made it though. Then Wednesday I had another doctor's appointment in Dothan, Al. which is a 75 mile drive from where I live and I went to that one alone too. My sweet husband has missed so much work because of me, having to take me to doctors because I was too sick to drive myself, so I wanted to do this alone so he wouldn't have to take off. I had to go to my Hematologist just to get blood drawn that day because I see her next Wednesday to find out how my anemia is going. After I got home that day I just ended up in bed because I've been so weak and so sick ever since. I haven't even gotten up until today. I called my new Gastroenterologist this morning to ask him to call me in something for the chronic diarrhea & I'm 'waiting now for him to do that. I didn't talk to him, talked to his nurse practitioner who   knows very little about me or my case and she told me to keep taking over the counter medicine for the diarrhea and I told her that I know there has to be something better to take than that so she was going to "text" the doctor (not sure why unless he isn't working today) and ask him if he would call in something. So far I haven't heard from either of them. I wonder how they would feel if they had chronic diarrhea for a week??????  It's so hard not to get discouraged with this disease because there are so many ups and downs to it. I was taking three things through my port at the same time for two weeks so that alone is a whole lot. I had an antibiotic I was getting every eight hours through the port, the calsitrol I get Monday, Wednesday and Friday through my port and then my TPN every day through my port. That is a whole lot of stuff to go through your body at  one time in my opinion so who knows what causes what to happen in your  body. I think because I did so good in the beginning I got the feeling that I was home free and would not have bad days again so I suppose I learned from this that there will be good days and bad days and I have to learn to live with whatever life throws at me now while I'm trying to get well. Then I wonder, WHEN will I declare I am well????? Not sure if that ever will happen. I believe it will be an ongoing process for a long time, maybe forever. One good thing out of all this though. My phosphorus has finally, finally gotten back up to normal  after four months of it nearly killing me. So now my phosphorus in my TPN is being cut back because it's at the normal range again. I wonder though will I have to keep my Groshong port forever????? It's the best and easiest way to treat all my problems. I can live with it though if I do. I've learned to bathe and wash my hair now without worrying about getting water in it. You have to worry about anything getting into it because a germ could get in and go straight to your heart, where the port goes to, and you wouldn't live very long so you have to be very careful with it. So, I haven't been on social media or on here all week because I have just been too sick again and wasn't sure what to say actually. I know everybody thinks because I know what I have now and I'm getting treatment for it that I am "well" and shouldn't have problems anymore but as this week has proven, that isn't the case so I just am not sure how to handle that really. I don't want people to think it's all a piece of cake now, it's not. I just now have hope!!!!!!!