The book I mentioned is the Traumatic Brain Injury Survival Guide by Dr. Glen Johnson (he is a clinical neuropsychologist). Here is the link to the free book I mentioned: http://www.tbiguide.com/index.html (it will open in a new window). It is a fantastic read, even for others like me who have a hard time scrolling through pages. Enjoy!
This week was a doozie- I don't think that is a real word, but, it would make even more sense if it wasn't. :) I had some big decisions to make this week. Though I had so much anxiety and nervousness about them, I cannot express how relieved I am feeling now that they have been made. I will be starting on a new journey soon, and I am looking forward to it. I saw the doctor again this week, and unfortunately, some of the persistent issues I am facing will not be going away; they will just be kept at bay with medications. I was told that the issues were secondary to the TBI, and that though my brain has technically healed, there are ongoing issues that have no end date. I have been doing some research (I will add a link for a free book- Word document), on the brain, TBIs, etc., and I have found the reading to be so interesting, and so validating. Sometimes I just feel like a crazy person. In reading, I have felt validated that some of the issues I deal with (for example, not remembering words when I need to (and then describing them to people so that they can help me) )are also described by many other people who have experienced TBI. There are several other issues, that I will write about as they come up, that were eye-opening. From all that I read (and am able to recall), improvement slows down immensely as the two-year post-incident approaches. The good news is that it still improves. The bad news is that I think it is already slow, and I am impatient. Again, the good news is there will be continual improvement. I was told that I am not progressing as well because of stress I deal with, and that basically the only way to improve this is to decrease the stress. For me, this means a lot of changes will be happening. Hence my new journey. I am optimistic that my new journey will bring about the changes I am hoping for.
Now, I am going to share something with you that I was not sure I should share, but I think it is insightful to TBI and recovery. DISCLAIMER: For any potential future employers (should that ever happen), please know that this is not an issue, and I am proud that I have improved.*** For any one else, please know that there are struggles your loved ones and others may not realize. I have said before that I am missing part of my memory (about 6-8 months worth) ; I do not recall doing this, but my loved ones described to me that while I was at work, on almost a daily basis after I went back, I would call them crying and asking them to come and get me (as I was hiding under my desk or in my office with the door closed). I can faintly recall a time when I thought about hiding, but this was more recent, and I do not remember their experiences. Two of my loved ones told me about these incidents- and they were almost daily apparently. This was so hard for me to hear. I can only imagine how they felt, and how I must have felt at that time to resort to these measures. Maybe this is why some of my memory is gone? Maybe some of the feelings are just too uncomfortable to bear? Or, maybe it is what I think- a combination of this and the TBI. Regardless, I have made huge strides, and am optimistic that they will continue, I know at a slower pace, but will still continue which is tremendous. I am so thankful to have my support system, and to know that they are there for me, no matter how tough it gets. Please be there for your loved ones. Even if it is a text that says you are thinking of them, and just wanted to check and see how they are doing. These little gestures go a long way.
I have been out of the blog for a few weeks now. Mostly due to dealing with health and work issues. It has been a very long few weeks. This will be a longer blog, but it will have lots of info, so hang in there!
In the beginning of this month, I had a new project at work I was focused on. I will admit, it was a lot of work, but I enjoyed having something else to focus on. Good news was that I was able to focus. Bad news... well... in looking back... I don't think I did much of anything else besides the project (and it appears that by "focus", I use it in my own definition, not in the one I believe most of us think of right away). :) In speaking with my doctors, they felt it was probably due to the fact that I cannot adequately multi-task, and that when something takes a lot of focus (that word again) and energy, it will drain me of being able to place the attention and focus on anything else. Bummer.
After a few days, the excitement became increased stress, and the stress got to me worse than ever. This stress, of course, lowered my immune system, and my body responded (not how I would have liked). Amazing how this cycle works.
Early this last week, I thought to myself how nice it would be to be able to take a break from my head for a minute- just a minute. The best way I could describe the feeling I am talking about is for you to imagine wearing a tight hat, or having your hair pulled back too tight. I wanted the feeling of relief that accompanies taking off the hat or removing the ponytail. Alas though, this is not possible. Fortunately, my head is on my body, and I don't want to deal with any of the ways a temporary reprieve would even be possible. So, instead, I continue about my day and life, knowing that there is this giant aching bulb on the top of my neck, keeping me aware of it's presence, but not exactly working the way I would like it too. Darn focus again.
I did feel some sense of accomplishment through my project, and was happy that I was able to pay attention to some detail surrounding it that I may not have noticed a year ago. On the contrary, I don't remember much of some of the information any longer, so I am really glad I wrote things down.
For those of you who are new to this thing called TBI, or just have issues with your own memory or brain for other reasons, I definitely suggest writing things down. Also, remembering where you wrote them down can be a challenge (from experience), so try to make it in the same place every time. Even if the information is out of sequence, it is much easier to put together if you keep it in the same place.
Let's fast forward to this last Wednesday. I did not have some of the medication the doctor prescribes for me, but I felt ok. (I have been waiting for an issue with the insurance company, that I was completely unaware of until Thursday). I thought it would be ready by Thursday, so I wasn't too concerned. Thursday- I felt very different... not quite sure. I was actually, I think, quiet. Quiet Rocky is a Rocky that was not around much before the conquering the floor with the back of my head. Quiet Rocky is one that I still have a hard time figuring out. Regardless, I worked through it, without the medication I needed, and got through the long day. Friday. Ooooohhhhhhh Friday..... not so good. Three days. THREE DAYS. That's all it took. The cycle of headache>focus/attention issues> emotional response> vision issues, speech issues, processing issues>emotional response>headache>nausea>headache, and around again was at it's fullest. To the point where I actually had to miss work. My kids thought taking me to a funny movie would be helpful. I actually cried during funny parts. What the heck??? Seriously not right. Of even greater concern was the fact that a little pill helps me to avoid this entire cycle. It's not a miracle, but woah- I didn't know it was that effective until I didn't have it. It also helped me to realize that without the doctors and the treatment I am lucky enough to get, I would be no where near where I am now (even though I am not even anywhere near where I want to be yet). It is scary.
I am such a different person than I was before... so much came to light. Like the Incredible Hulk though, I don't like being green, so I decided to fork-out-the-dough for some "lay-over" medicine (I could have used the Jeckyll and Hide analogy, but I like Hulk better). Luckily, my pharmacy was able to get me a week dose until the insurance issue is worked out, so late Friday I started to new "normalize", at least a little, after taking my medication late in the day. It was enough to subdue the emotional response and relieve some of the cycle's symptoms. The headache remained, but I hosted an essential oil class, and the facilitator had an AWESOME essential oil mix that I rubbed directly on the back of my head, my forehead, and my temples, that actually relieved most of the headache within minutes. SOLD!!! I am trying essential oils. I will, of course, continue to take my anti-gamma-radiation-Hulk-pills in order to avoid the vicious cycle we all try to avoid, but I am going to try to combat some of the other symptoms more naturally. I will keep you in the loop.
For this next week.. weekend... day... hour... minute: I will make it a point to try to think more positively about the medication I am on. Though I don't like the idea of needing medication to make me feel more "normal", I don't like how I am even more when I am not on them.So, I will try to think more positively about them (plus, I will get them refilled sooner so I don't face this issue again). Second, I will try to stay more dedicated to the essential oils and the natural symptom remedies. Maybe this will help my body to feel cleaner, and my mind to feel clearer. Third, I am thankful for the days I feel like taking a momentary break from my head. It means that at least it is working. It may not be how I want it to work, but it is working. I am so glad for that.
Be the reason someone chose not to give-up.
Photo credit to https://beacon.wharton.upenn.edu/entrepreneurship/2014/11/scale-your-mindset/