Do people even read blogs anymore? Seems like we went from blogs, to Facebook to Instagram to Snapchat and TikTok. Maybe it’s a sign that collectively our attention span is shorter. Or that we prefer immediate gratification. Either way, it’s like the art of writing actual letters. It’s just something we’ve seemed to past in advancement of the next thing.
I can’t even express how much has changed since my last post 6 or more years ago. Sometimes it’s hard to believe it’s my own life. But it is and it’s nothing like it was when I was writing about babies and vacations and goals I wanted to hit by 40.
In 2018, after moving to Kansas, I was diagnosed with Trigeminal Neuralgia. It’s also been known as the Suicide disease because of the rate that people afflicted with it take their own lives. It’s said to be one of the worst pains known to man. I started on an anti seizure medication which.was easily the strongest med I’ve ever been on. After a failed trial at that, it was recommended I have brain surgery. So after interviewing a neurosurgeon at Johns Hopkins and one in Tyler, Texas, we made the decision for logistical purposes that we’d go to Tyler. A couple of weeks before surgery, we took the girls to Hawaii. I desperately wanted and needed a happy memory going into surgery. So in June of 2018, I had the surgery. The first days were awful. Double vision, nausea, no coordination, slurry speak. They’d told me the full recovery could take 18 months but I was already wondering how I’d survive this. The surgeon never came to see or even came out to spoke to Jose following surgery. They left my catheter in for 5 days and discharged me with nothing for pain nausea or brain swelling. About a week after surgery while getting up to go to the bathroom. I lost my balance and fell, hitting my head on the tile floor and being knocked unconscious. The next few weeks were awful and by July 4. I suffered a horrible set back. I was no longer able to drive, couldn’t walk without a walker, and was in excruciating pain. We had booked a trip with friends to Iceland in October which we had to cancel because I could barely walk.
Over that summer. I became very involved in the TN community online. I joined a group that was working to educate medical professionals and lawmakers about the horrendous pain we suffered with and how not everyone claiming pain is a drug seeker. I ended up becoming Vice President of this organization and we raised money to go on a multi state trip to meet others with TN and to film a documentary about it. I met some amazing and strong women. Women I still have friendships with today. The trip was taxing for many reasons but I was so honored to meet these women.
By October, I knew something was wrong and made an appointment with a world renowned neurosurgeon in California I fully expected him to say he would consider doing anything for at least 6 months but he quickly agreed I needed a revision. That was scheduled for December of 2018. That surgery that was booked for 3 hours took 7. He said it was probably the most complicated revision he’d done. The wrong kind of Teflon was used and there were nerves that had fused together. I spent 2 nights in the ICU but was already feeling better than I had in months. I even went to Target to do a bit of Christmas shopping a week later. I was home in time for Christmas. It took a couple of more months but I started driving again and began to feel my independence e coming back.
In May of 2019 we made the decision that we wanted to go home to Texas. We decided I’d move back with the girls and get settled into an apartment and Jose would continue to interview and get the house ready to sell. He would come in on weekends. One evening he called me in terrible pain. He went to the ER and was diagnosed with kidney stones. They roll him he’d need radio frequency to break them up. Not having good experiences in kansas with medical care, he came to Texas. That weekend, I was already frustrated. Doing everything on my own, the heat of Texas summer, missing him like crazy. Needless to say I was not the kindest that weekend. He was already angry that I asked him to come despairs being in pain. The weekend was awful and on our final night, he told me he was done. Said he hadn’t been in love with me in a long while and just felt like it was over. I felt my life begin to crumble.
He left that Sunday to go home to kansas despite me begging him to stay so we could work through this. That was the beginning of the end. Every time I spoke with him on the phone I searched his words for reassurance but could find none. He finally agreed if I moved back to Kansas, we’d try therapy. So back we went. It was tense in the house. I’d hoped if we got home, familiarity would take over and settle back into a routine. But Jose ended up needing surgery which left him septic and hospitalized. When making the daily trips to see him. I began to notice how tired my legs felt. After he came home. I started having abdominal pain and vomiting and my legs were very weak. I went to the ER and was admitted. They found a suspicious mass on my ovary and also began to get concerned that I may have colon cancer.
I was sent home on antibiotics and told to follow up with gyn oncologist. But before that coupe happen, the weakness in my legs became so bad, I began to start having falls. By late September I was in the hospital more than I was out. I had horrific falls and could no longer get up. We had to call the fire department to get me up and to the hospital. I saw every kind of specialist. They mentioned things like multiple myeloma, ovarian cancer, leukemia, absorption disorder multiple sclerosis. Lyme disease, Epstein Barr, Guillain Barre, myelogenous syndrome and bone barrow failure.
Over the next 4 months, I saw countless specialists, was transferred 2 hours from home to a university research hospital (after my ambulance broke down on the side of the road) where I arrived in critical condition. I missed Halloween, Thanksgiving, Olivia’s birthday, Christmas, New Years and Sofia’s birthday. I had hundreds of vials of blood drawn, PICC lines, CTs, MRIs. Lumbar punctures, bone marrow biopsies, muscle biopsies, fat pad biopsies, nerve biopsies, echocardiograms. Doppler, scopes, EMGs, PT, OT, blood transfusion I was on high doses of O2, BiPap and was told I was very near being intubation and on a feeding tube. I lost over 40 pounds, needed braces to try to prevent foot drop (unsuccessfully) and ended up paralyzed from the waist down. I had to use bed pans, had to be turned and had zero reflexes in my lower extremities.
Ultimately I was diagnosed with a condition called CIDP or chronic inflammatory Demyelinating polyneuropathy which is essentially the chronic form of Guillian Barre. Life has never returned to normal. After being discharged from the university hospital, I was admitted back to inpatient rehab where I was pushed very hard. Even sitting up in bed was a challenge. After two weeks, I was discharged home in a wheelchair. I couldn’t stand, couldn’t walk, couldn’t get to the bathroom or shower myself. I was completely dependent on my husband and kids. And for a marriage that was already incredibly strained, my health put the final nail in the coffin.
