Hello all. I’m sorry I haven’t written in a while. Things got busy and stressful. So much has happened in the last two months. The heat here is making things extremely difficult for me. I’m trying to stay cool, just not always easy!
My son graduated VPK!!! I’m such a proud mommy! I’m not going to pretend that I didn’t tear up, because I did! It was such a special moment in my life. I rested for days, just so I could go. We had some rough moments during, but I made it through. He smiled so big when he saw me! He’s my biggest joy in life.
After school was out, we decided to spend some time with my mom in Tennessee. My mom drove the entire way in one day, 12 hours. It was so hard on me, and I ended up sleeping for nearly 2 days after to recover. It’s quiet and peaceful at my Mom’s. During that time we had an appointment with my Electrophysiologist in Virginia. I was diagnosed with POTS, and told that my HR is still out of control, and the my Atrial Tachycardia episodes are becoming more frequent. Yay! Though he did decide to start me on IV saline therapy to help. After that we returned to my mom’s in Tennesse, to relax and just spend time together. I ended up having to go to the doctor there for an emergency. My jaw had popped out of place, and the tendon was swollen and causing pain. The doctor expressed his concern over my TMJ, the severity of it. So I have to add another doctor to the ever growing team of doctors I see.
When we finally got back to Florida, I had a follow up with my neurologist. Yes, I went back to Cleveland Clinic. She agreed to do the infusions, and put the orders right in, even decided i’d get a picc line placed. Again.. Yay me… Not too long after that appointment I had to see my gastro. We had to change all my meds, and diet, again. My GERD is still uncontrolled, and i’m still getting sick when I eat. I’ve started the new medicine, but haven’t noticed any change. 🙁 We are concerned I will have to eventually get TPN. I’m hoping to avoid that.
Finally the day came to get my picc line. Nervous doesn’t even begin to describe how I felt. I was terrified. I cried, was angry, and then resigned. I decided it’s just another thing i’ll have to adjust to in battling this illness. As long as I fight it, i’ll never give up. The nurse that did the picc line was great. She really put me at ease with explaining everything. So without further ado… Here I am with the picc line! To say there was some pain and discomfort would be an understatement. It’s taken some time to get used to it. I’ve now had it for nearly 2 weeks, and sometimes I forget I even have it! lol We’ve decided to the the saline infusions at home. Which is comfortable to me. My nurse is amazing, the entire agency is amazing actually!! I’ve done one infusion already, and what a difference it made!! I’m hoping after the 4 week trial period we move to everyday, or a few times a week!! Unfortunately though, I’ll be getting a port.
We’ve had a few bumps in the last few months. I’m still trying to get answers on why all this happened. I know I may never get them, but i’m still going to try. I’m still working on being positive, and being the best mother I can be. I’m hoping to make a difference in the world. I want to inspire others. I want my son to know my love for him. I want my family to know how much their support means to me. How much my friends have helped me. I’m not losing focus on life, nor am I going to give up.