Same old, same old. I'm still having the same fatigue attacks. Still have the super low energy. Still having the dizziness, still having the "limp" arm. Still having the sleep problems, still having the micro muscle spasms in my neck/back - and now down to my hips and into my leg - and more often. Still having the same mental clarity issues. Still have the right ear pressure with some new "crackling" noises periodically throughout the day.
P.T. EXHAUSTION
My Physical Therapy routine is something I have been really excited about, but it completely exhausts me. I thought I'd have built up some tolerance to it, but that just isn't happening.
There are certain things that must happen in my day. Besides eating, top priority to me is the physical therapy. I admit there were a few days that I just completely forgot to do it - or maybe I chose to forget but because I know it will make me completely exhausted. I tried it first thing in the morning, but afterwards, needed to rest and didn't have energy to get myself something to eat for hours - which is not good for my hypoglycemia. I've got myself a new routine - breakfast, maybe returning a few emails or phone calls, lunch THEN the exercises. I can set a bottle of water and a snack on the coffee table to have access to it if I end up not being able to get off the couch until Jeff gets home. If I get nothing else done the rest of the day, I know I've got the essentials in (eating and exercising). I can do up to about a minute's worth or leg lifts or arm lifts but then I need to rest for about 3-5 minutes, do another set of something, rest. There are 10 different movements, so it takes over an hour. An example of a set is five slow lifts of my foot - to about a foot off the ground, holding it for about 3-5 seconds. Impressed? LOL
Tuesday was a pretty lousy day for me - energy-wise. I got my own breakfast but then was too tired to do anything else, let alone exercise. I still can't say what brings on a bad day vs. a lousy day vs. an O.K. day.
Wednesday morning (yesterday) I woke up, got something to eat, made some phone calls, returned some emails and felt OK. I was feeling pretty encouraged, so I even made plans to go out to dinner to celebrate being off my first 2 month reduction of Tegretol. (Actually that milestone was last Friday, but haven't felt up to going out). So, I figured if I did my exercises right after lunch, from about 1:00-2:00, then I'd have 2:00 to 5:00 to rest, and 5:00-6:00 to get ready. I didn't feel winded after the first set, so I continued. I only felt a little winded after the second set, so I continued. After the third set, I sat down and took a couple of deep breaths. I continued with three more sets and was feeling ok. I knew I was pushing myself but finished them. By the time I was done, with only a couple of brief breaks, I felt like I should rest on the couch. Within minutes, I felt an overwhelming sense of fatigue and "heaviness". My torso felt like it was made of lead and my neck, head and arms were immovable. I laid there listless and motionless for at least 2 1/2 hours. Finally, I realized dinner out was not going to happen, so I texted Jeff and called it off. He brought home some tacos and I wasn't able to eat them until about 7:00. I was able to get up a little and even made it to the bathroom unassisted. Of course, I had to sit up for a couple of minutes first, then move from the couch to the loveseat and then five minutes later, walk to the bathroom. By 10:00 I was able to sit up and at 10:30 I walked up the stairs to the bedroom. I guess on the days that I really have to get something done, there is no way I can expect to exercise first. Tasks have to happen beforehand. And by tasks, I mean, eating, or doing the things I can do while sitting up. On decent days, I can get a load of laundry done or the dishes done. On good days I can do both!
NO TEGRETOL REDUCTION :(
I went to the neurologist today. He wants me to have an MRI of my cervical spine (neck). He's suspicious that the limp arm syndrome might be caused by something amiss in my neck.
I asked about reducing the Tegretol by another 100mg and he said "not yet - wait until we see what the MRI shows". That was like a stab in my heart. It was kind of hard not to start crying. I really want to be done with the Tegretol. I've been praying to be able to find out what is wrong with me. Then I got more specific and asked to be able to know if the Tegretol was the main problem. I just didn't get a good feeling or answer that it IS the Tegretol. Or at least that the Tegretol is the main culprit. Or maybe I just haven't been able to hear a clear answer.
I asked the doctor that if the MRI was normal, what would be next. He doesn't know what to do with me after that. If the MRI DOES show something amiss in my cervical spine it COULD be related to all of the dizziness, fatigue and even the ear problem - but especially the limp arm issues. I really hope I get in for the MRI next week before we leave for Utah. I have an appointment with a doctor in Utah on July 30 and would love for someone to be able to tell me what the heck is wrong with me.
I also showed him all of the supplements that I have been taking. Mostly prescribed by the homeopathic physician. He looked them over carefully especially since he was concerned about me taking too much of something. He asked, "do you feel any better since you've been taking them?" Um, well, no. "Then you might want to consider not taking them anymore". Duh. Since I've spent hundreds and hundreds of dollars on them, I'm going to continue taking them, but not replace them when I run out. Apparently my problems are not nutritionally or organically related. And improving my nutrition and adding supplements have not improved my energy levels or solved ANY of my symptoms, I guess I'll have to agree with him.
I had an appointment with the Physical Therapist immediately after the doctor appointment. Teh P.T wants me to try to continue with what he's given me already. He said that if it seems to bother my neck at all, to stop. Listen to your body. He's really compassionate and saw that I was not having a great day. He walked me out to my car and even carried my purse for me since he saw that it looked to be pretty heavy. Maybe THATS what's wrong with my neck? My purse is too heavy? Maybe not, nevertheless, I will be cleaning it out soon. It's heavy all by itself because it's big, leather and has lots of compartments, but that doesn't mean I have to keep them all full, I guess. I DID take out the 100' metal tape measure the other day, but apparently that just wasn't enough...LOL
Why does it just seems so excruciatingly long to get some tests done and see doctors? What if I was the sole income provider or our livelihood depended on me being able to bring in income? I started seeking medical care for this back in October. NINE months ago. My last day worked this year was February 28 and that's after missing almost two weeks to having the flu and missing many days going to doctor appointments.
When my symptoms became really acute in early April, it just seemed that doctors should have been able to get me in sooner. I'm half tempted to take myself into the emergency room today and demand an MRI since I've heard that people who don't have insurance (and visit the E.R. on a regular basis, as if that were their primary care provider), get tests done pretty quickly and find out what's wrong almost on the same day! Why does it have to be "you still have these symptoms for more than three months? Let's schedule you for an MRI - how's a month from now?" THEN, and only AFTER the MRI is completed, read and interpreted, can I schedule a follow up appointment, which will probably take another month or two. REALLY? I can only imagine how things are going to be when OBAMACARE is in full force. I will have lost about 6 months of potential earnings by the time I see the neurologist for the post MRI follow up appointment. Who can afford to do that? Us, I guess. I can only thank the Lord for blessing me with a hard-working, intelligent husband to be able to earn a good living. I think we might be adding another year or so to the time that he wanted to retire with my lost earnings and added medical expenses. I feel so guilty. He's been physically ready to retire for a few years now already. It's really taking a toll on him. There are also added expenses now like purchasing take out food for dinner every night and having to hire out housekeeping, paying someone else to wash our cars and other tasks around the house. They aren't huge expenses, but they're starting to add up. If and when I'm able to work again, I'm going to work extra hard to bring in some income for retirement savings so we can get him unemployed (retired)!
MOVING ON
We're extremely blessed to have been able to just buy a house in Utah that we plan to retire to/use as a second home for now. We're going to sell the house here in Eugene to downsize and then get into a small condo or something like that that takes little or no maintenance. That wasn't really in the plans until next year, but I'm thinking it needs to happen sooner since I am just not able to do any kind of housekeeping or upkeep. There are several things that have to be done cosmetically to get it "showable" and certainly would have to sort through drawers, cupboards and closets and undertake the monstrous job of cleaning out the garage and attic. I'm thinking I'll hire someone to do all of that with me. It won't be hard to oversee the cosmetic repairs. I'm thinking that it'll be hard the day we have to move out because I really love this house. I love the floor plan, the location, the neighborhood, etc. We've put a lot of time and money into making it work for us. But, I am ready to move on and let it go. I look around every day feeling the burden of the upkeep and imagine how much less stress I would have if I didn't have to take care of it all. Maybe we could move into one of the condos that are directly behind our house? Same neighborhood. Wouldn't that be nice?
I want to end this post on a positive note. Even though this has been the most challenging couple of years of my life, I really do have many, many blessings and I've learned a lot about myself and others. About diet, nutrition and health. About gratitude, empathy and service. About what matters most. About listening for the Spirit. About patience. I've learned there is much to learn. Much more than ever imagined. I can take these lessons into the continuing challenges, and the inevitable new challenges that lie ahead.
I've learned to lean on the gospel and Jesus Christ and my Heavenly Father. That feels really good. It's strange to say that trials bring you blessings, but I know it's true. Tapping into those resources brings a level of peace and serenity that says, "Everything will be ok" unlike anything else. If everything isn't going to be alright soon, it will be eventually.
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