At the end of February my mom and I spent the afternoon doing some shopping and then decided to take the kids for a walk. We live close to a path that gets us right in the heart of our little downtown. It's about a 2 mile walk and once we're there we get ice cream. About halfway my mom mentioned that her hip was starting to bother her. We took it slow and stopped a few times along the way. I let my dad know that he'd need to pick her up from downtown instead of my house so she didn't have to walk back. Her hands started to swell and we stopped a few more times before reaching the library.
As I'm walking towards the library she stops at the corner and looks around, confused. If you've met my mom, you know that she's no stranger to being confused. She definitely has good days and bad days (don't we all!) but this was different. She looked right at me and told me that she needed to find her dog. When I asked what dog she was looking for she got more agitated and started asking for Columbo.
Columbo has been gone for years. They had him put to sleep when he was 18 years old, deaf and blind. I was probably 9 or 10 at the time. (it's okay, I'll do the math for you, it had been nearly 25 years). After some tears, and me trying to keep the kids from really paying attention to what is going on, my dad finally picked her up. I gave him a quick update as she was still upset and wanting to know if he was going to help her find her dog.
Sunday goes by and she's okay. Tired, stays in bed most of the day but okay.
Monday I go to work and I send her a message (she loves her some facebook messenger!) to ask if she'd called the doctor. She replies asking me why and that she wants to go out and find her dog. I'm trying hard to keep it together and I call the husband to ask him if he can go over and check on her.
**Quick side story, as he's pulling out of our neighborhood to check on her, he gets pulled over for rolling through the stop sign at the end of our street. He told the cop his mother in law was having stroke like symptoms and he was in a hurry, the cop asked where she lived and in true hubby fashion he couldn't remember the name of the street but told the cop he could follow him and give him the ticket when he got there. I swear, this shit only happens to him! The cop let him go and did not follow**
So anyway, he gets there and she's all upset because she's trying to make a smoothie and she can't do anything. Her hands just won't work. She can't open anything, she can't peel her banana, she has zero strength...AND she's still looking for her missing dog. I called her doctor and they sent us straight to the ER.
This is where the fun begins. I'm going to start, before I lose you in the even longer story, by saying do not be afraid to ask questions, questions and more questions. Do not be afraid to ask for a second or even third opinion. Do not be afraid to second guess what someone tells you. I've always felt that doctors should be trusted. They're human like the rest of us but they're really smart humans that went to school for a really long time. They should know what they're talking about and should be trusted...and I do still believe that...but I also believe that they're only human. They can still make mistakes, they can miss something, they can maybe not feel like dealing with the messy unknown that day. You know yourself and you know your family. Speak up. If you don't like what someone says, if you don't agree with a treatment plan you have EVERY right to say no or to ask for someone else.
So here goes. My mom spent over a week in the hospital. She was admitted February 22nd and released March 1st. I saw her every day, I talked to every doctor. She had an entire team of doctors checking on her. Most of them I felt did a really good job. She had some great nurses, she also had one in particular that she didn't care for. He worked at night and he wasn't as gentle with her while helping her walk to the bathroom. You see during all of this my mom, the same woman that was out closing the bar and dancing the night away just a few weeks before this, could not get out of bed and walk to the bathroom on her own. Even with a team of doctors and every test imaginable we heard the same thing over and over, "we're not sure, we don't know, we're going to run more tests"
Finally, at the end of that week all they could come up with was an autoimmune brain disease. This lead us down the path of needing a rhuematologist. Unfortunately nobody local could see her while in the hospital, they only handle out patient. I asked a lot of questions but even looking back, I should have asked more. I should have pressed more. So many little things were missed, so many things were wrong and while it may not have made a difference, we need to be the voice for ourselves and for those that can't be the voice for themselves.
She was released and put on a hefty dose of steroids. I know from her being on them before that typically it's not long term. They always give you instructions to ween off of them, except this time they didn't.
Now we're home and it took some juggling and some craziness but we have a routine down. She can't be by herself because even though my dad installed hand rails in her bathroom and made it so she can get out of bed on her own, she can't really care for herself. She can't make herself food or get around easily. So at 7am my dad brings her over to my house where she hangs out on my couch coloring and watching tv. I work from home and spend my day running between my phone/computer and her downstairs on my couch. I work until 3:30 and then it's homework and chores and dinner. My dad gets to my house around 6. Sometimes they stay for dinner, sometimes they head home. By the time my dad gets her home and settled it's probably close to 8pm. Needless to say, we're all tired, but we're all doing exactly what she would be doing for any one of us in heart beat. It would never cross my mind to NOT do this.
Our first trip to a rheumatologist was a total waste of time. I'd been warned that the local doctors are just not familiar with these rare diseases but it was the first one we could get in to. We'd tried Cleveland Clinic, OSU even U of M. Everyone had waiting lists...waiting lists that went in to June! This was early March, June seems so far away. The unknown is scary. Feeling like maybe this is the new normal or maybe this is just a chapter in this book that will have a crazy plot twist next month is not a fun place to be. This doctor that we saw hadn't even read her chart before we showed up. She sat with a stack of papers, at least 2 inches thick, and went through them while we were in the office. She kept telling us that nothing appeared to be lupus, which we knew, but I guess because the orders from the primary doctor mentioned lupus that was the only thing she was looking for. She never once mentioned the memory loss. My mom can't remember dates, can't remember the vacation we took last summer, can't remember her own phone number or even her anniversary. She knows her family, she remembers things from high school but couldn't tell you what year it was. At one point towards the end of the appointment she told us she was going to run a few more very specific blood tests but if they were clear we didn't have to come back. I am fairly certain the look on my face was something out of a cartoon. This is a doctor, and not just any doctor, a highly sought after specialist. Here is the woman that is clearly sick and we're telling you that this is not her normal. She might be 65 years old but she is not an old lady. Do not tell me that simply because the test results that we already have copies of from the hospital do not show lupus and shove us out the door.
I do not speak up much, I'm much like my dad and I'm very closed off in a lot of ways. I asked her what we should do if we're not supposed to come back. I asked if she could give her instructions to get her off the steroids since I know the doctors at the hospital put her on them simply as a bandaid to get her home so that rheumatology could take over her care. In a nutshell she told me it wasn't her problem, we'd need to follow up with Neuro and we'd need to talk to the prescribing doctor. It was by far the worst appointment I'd ever been to in my entire life. I'd never left an office feeling like a doctor didn't want to help the way I did that day.
I swear I'm getting to the end of this post, even if you've read this far. It's a lot, I know, and I'm not going to lie it's just as much for me to remember how it all played out.
After that I finally reached out on Facebook. I hadn't posted a whole lot about what was going on but I needed help. I asked if anyone had any kind of a connection because we needed a new doctor, a good doctor, and the idea of waiting another 2 months to see someone made me fall in to a bottle of wine and a box of chocolate. (true story) Among Cthe comments was a friend from high school, she said that she knew someone at OSU and she was willing to see my mom. USE YOUR RESOURCES. So much is about who you know, do not be afraid to ask!! It took some time but I finally managed to get her appointment scheduled (to give you an idea, the first available was June 15th!) however the Dr put a note on the chart approving a bump. We went yesterday. Every person we came in to contact with was so nice. They went over every detail of mom's history, her care, what was going on now, how it all started. They asked a ton of questions. When the Dr came in and was talking to my mom and to us I literally almost cried. I wanted to cry because some of what she was saying was scary shit and because she had been in the room for 10 minutes and had done more than any doctor we'd seen over the last month. We walked out of there with instructions on a second opinion from Neuro (which they've already called and scheduled, we go back on Monday), more blood work, forms on getting details from her other doctors on a previous autoimmune diagnosis...but what the most important thing we walked away with was a feeling of (FINALLY!) not being alone in this.
All of this to say: Fight. Do not accept an answer that does not sit well with you. Do not ignore the voice in your head that tells you there has to be more. There has to be someone that is willing to put in the work and ask the tough questions. Find that doctor. Find that person. It could, frankly, be a matter of life or death.
I am sure I will have more updates, hopefully none quite as long as this, as we walk this very long road.
