Hello everyone it’s been too long since we last updated my page and I have some big news to share!

When we left off I was trialing a pain pump. I did have my pain pump placement surgery March of 2021 so it’s been over a year and a half and it’s helped greatly! It’s taken a long time to find the right combination of drugs and the right dose of the medication. Every three months we traveled to Chicago and we would make an adjustment to the dose of the medications (I have two meds in my pain pump). It’s taken quite a long time but I think I am finally at my sweet spot! 

I still travel to Chicago quite frequently, about every 3 months. I absolutely love my pain management doctor and he is well worth the 4 hour drive.

I had another surgery a few days after my pain pump placement to have a Power Port O Cath placed in my chest. It’s a device that has a catheter attached to it that goes to a large vein near my heart. (I added a picture to explain better). It makes it easier to get infusions, draw blood  and get medication. It gives me IV access so I don’t get poked for IVs or blood draws anymore, which is a big relief for me since I have such bad veins. The unfortunate new about my current Port is that it has moved/shifted. It’s pretty deep and tilted to the left. This is most likely due to my connective tissues disorder, Ehlers Danlos Syndrome (EDS). On Tuesday (the 15th) I will be having surgery where they will remove my current port and replace it with a new one.

I also received my wheelchair back in March of 2021.  So many people think of a wheelchair as confining but I think it’s the complete opposite. I think it gives me freedom and allows me to do so much more then I would of otherwise been able to do. It is a power chair that has a couple of cool features. I’m able to tilt and recline the chair and raise the feet. I can almost lay completely flat if I want to. My chair will also raise me up 12in (I also added a photo of this) so I can reach things easier like to get my coat off the hook or a glass from the cabinet.

On a not so good news. I unfortunately have started again with headaches and similar symptoms of my Chiari malformation (the reason for my brain surgery). I will be seeing a neurologist in Chicago during our current trip, I see her this Wednesday (the 16th). While we are there we will go over the MRI I had a few weeks ago.

My previous brain MRI I had earlier this year showed some abnormalities and I was referred to an ophthalmologist and I saw one in Green Bay. The doctor said everything looked fine but after consulting with my neurologist she wants me to see a neuro-ophthalmologist just to confirm that. So I have an appointment with them on Wednesday too.

My mom and I will be in Chicago for the rest of the week. We made the trip down last Thursday to I see my pain management doctor on the 11th, then I’ll have my surgery on the 15th, and on the 16th I see both my neurologist and my nuero-ophthalmologist. It’s not very good timing to have surgery and then the next day have a day full with appointments but we will make it work.

In other news it’s been 2 years this past August that I’ve been paralyzed. I’ve been doing Physical Therapy 1-2 times a week for almost all of that time and I have made great strides. Once my pain was more under control I was able to tolerate doing more in physical therapy. I’ve been using forearm crutches to walk short distances and I couldn’t be more happier with the progress I’ve made! A few weeks ago in physical therapy I also took my first unassisted and independent steps!!! Which is amazing and one of my biggest achievements. At one point I really truly didn’t think I would ever get to this point. It’s a great and amazing feeling. I also love my physical therapists, they are truly amazing at what they do! 

Over the past two years I really have appreciated all the messages, prayers, support and cards that everyone has sent to me, I’ve kept every one of them and I really do appreciate each one! Thank you!!!💗