Yesterday I spent the day in the IMC emergency room with a severe complex, hemiplegic migraine. I was driving to work when I had a strange pressure and pain in my lower spine, and it trickeled up to my neck and head. Car started looking blurry, and I felt confused and tingly all over. I worked my way through four lanes of freeway traffic to pull over in a parking lot. Within minutes I lost use of my left arm, my face was numb, and I couldn't talk straight. I called my mom who has helped me through many of these events in my life, and she was particularly concerned about this episode whereas it was different. She called Mike and my sweet hubby came to my rescue. We spent the day in the hospital while I was examined, monitored, got iv fluids, and got an iv cocktail of meds. Several hours later I was able to talk again, and the pressure from my head was relieved. But I still felt a lot of pain and pressure in my spine. They released me from the hospital with orders to see my neurologist ASAP.
This is how I work... I stay strong until I collapse. This happened the first week in May as well, after Jayson's high-risk tube change and cluster of crazy seizures. In May my migraine was different as well, and even more resembled a seizure. I suppose it's time to go back to my neurologist and get back on my preventative migraine medications. But honestly, the last thing I want is more doctor appointments, more medications, more copays, more days off work, and more tests. I have plenty of all of that already in my life. I just keep hoping my health problems go away. I've battled complex migraines since I was 18, and migraines in general since I was 9. I have seen several neurologists, had 3 MRI's, several CT scans, and tried about every kind of medication possible. Since I became pregnant with Jayson, my migraines have almost disappeared. But unfortunately, they are back. And unfortunately, it seems I cannot rely on superpowers to keep me afloat. Stress eventually breaks us down.
And I've had plenty of stress lately:
- Jayson's stoma is still in really bad shape, and his prolapse is growing, not shrinking. I'm fearful of a surgery in our future to repair it.
- Jayson is still getting used to CPAP and typically requires comforting anywhere from 2-6 times a night. Needless to say, I don't sleep.
- Jayson currently has a cold which is progressively getting harder for him to manage. We are heading to the doctor today, and have two more appointments tomorrow.
- J has 5 therapists right now, who typically come twice a month. And another therapist we see once a month. That's a lot of therapy appointments, a lot of homework, and a lot of pressure to keep Jayse progressing.
- Jayson's pulse oximeter broke last week. We have rented it so long that it's apparently ours. The cost to fix it is just under $400. And this was after we went through a feeding machine, our pulse ox, and the loaner pulse ox all in a week.
- Mike's car's registration was due in July. We found out it didn't pass emissions due to a missing catalytic converter. It shouldn't have ever been sold to him without a cat, but the car dealership went out of business. We forked out the $500 to put on a cat, and tried to have it re-inspected. We had to go to the county, and the county told us the car was originally a California car and requires California parts to work efficiently and pass emissions. The cat we paid for needed to be replaced again, and the car was missing a rear cat as well. Additionally, the very front small cat (yes this car has THREE cats) was likely aftermarket and needed to be replaced too. Lastly, the computer was tuned to work with these high-performance after market parts and made to trick the emissions machine into saying it passes. So, the computer needs to be reset to factory settings which will likely cause problems with the other high performance parts on the car, so we may need a new computer entirely. In case you aren't aware of car expenses, this will cost anywhere from $2000-$4000. And in case you weren't aware, we are poor and just bought a house. We don't have any dinero. We owe $12,700 on our car, and the trade in value was estimated at $6000-$8000 given the problems. We have been looking into our options for months, and no matter what we will lose $2000-$4000. Even more, we are now a one car family, and next month Mike's car can be towed and impounded for being 3 months past registration. Even from our driveway. Awesome.
- I'm crazy and throwing another early birthday bash for Jayson in a week. I go big or go home, and I'm doing it on a very tight budget so I'm hand making everything! I want one last celebration and visit with family before we go into hiding.
- Fall is coming and that means so is flu season. In October we close our doors and don't let others in and we don't go out, allll the way until May. You can only imagine the anxiety this causes. And it is looking like Jayson won't qualify for the RSV shots this year, and we can't pay for them since they cost approximately $6000 a month for 4 months.
- I'm still working 20 hours a week and trying to get in all of my hours and complete all of my tasks among all of the other car drama, doctor appointments and taking care of J.
- We have a VERY important doctor appointment coming up the first week of October that requires a TON of preparation. We only get to see the genetics team once a year, and I really want answers for J. I spend every free moment researching syndromes in hope of discovering his overarching diagnosis.
So there you have it. I'm human, just like you. I know all of my friends and family can make a very similar list of life's tough stresses, so I know I'm not alone. But I think I try to push myself too hard to do the impossible. Although I feel exposed, maybe it's good to retire my cape and mask... for a little while anyway.
(((HUGS))))!
ReplyDeleteI came across your blog from when you posted a link on utah kids. We also had our pulse/ox break and they told us that it would be $150 to repair it. However, we were still under the 1 or 2 year warranty (even though it was technically ours they would replace or repair within a year or two of when it became ours). I don't know if you have looked in to that, but it might help...also, the first few people I talked with about getting it fixed were fairly unhelpful. They said I had to bring it in to their office in Salt Lake, but when I talked with a manager, they came out, took ours, gave us a loaner and charged insurance instead of us. Our insurance took care of it. Sometimes it is all in who you talk to. I hope that helps a little.
ReplyDeleteI empathize with your stuggles. Life with special needs is not easy. Your family is in my thoughts and prayers. I hope that your health and your migraines get better.