I just went back and re-read most of my blog. I am so thankful to have the written record as events unfolded. I had forgotten some of those thing even happened, or how bad the situation and/or my emotions were at various times. I could read through eyes of amazement at just what has really transpired over the past 19 months.
So where am I today? I noticed a tend over the month more and more offering updates on my spiritual and emotional states. While I absolutely need to focus on these, today I will record current physical landmarks so I can refer to all this in the future as well.
Eyes: They are doing amazingly well. My mom and I were just talking this week about how wonderful and unplanned it has been that my sight has been restored so much and I've been able to avoid surgery this spring. I still have doubled vision peripherally or even if I turn my neck (don't have as much mobility there as I should) to try to look over my shoulders. So basically I only have usable sight from a few inches in front of my shoulders and forward. Otherwise I have to rotate my entire body if I want to look elsewhere, and since such movements still make me quite dizzy, I have to totally stop whatever else I'm doing at the time (like walking) to be able to actually take a look at anything that is not directly in front of me (or that even is in front, but is above or below my normal field of vision). What I can see in front of me is slowly getting a little less than 20/20 perfection, but I still haven't even needed to go back to the glasses I was wearing before the stroke. What is becoming less crystal-clear, I am considering returning more and more toward my pre-stroke "normal," so may actually be a sign of continued healing, from that standpoint.
Left Jaw/Face/Neck/Shoulder: On Sunday and Monday we drove several hours, out-of-state, for a medical consultation, then home again. I did alright on Tuesday (other than being really tired from the trip), but by Wednesday afternoon I wrote, "The temple to the outside of my eye. Not much the eye itself. But even if it were I would know that this were due to TN pain, diagnosed months prior to CPS for me." After further questions, I replied with, "My left shoulder sublexed from the strokes and it is popping in and out of socket a lot more since Sunday than it has in a while. When this acts up, the pain radiates out from it all directions, about a foot. Added to the already CPS pain, it gets pretty intolerable!"
One of the other group members said, "You are correct in identifying the long car rides as the culprit. The vibrations produced by autos set off our autonomic response system - which we don't even notice, but out CPS does... On car ride, never go more than 90 minutes without a break of at least 20 - 30 minutes. When you step out of the car, you will feel your whole body shaking, trembling, *vibrating*. Give yourself some rest until it calms down - then proceed. Piling on by driving straight through is absolutely the WRONG way to deal with it. They just have to learn to build this into trips. Sleep a lot the night before. And sit in the back where you can stretch out and move a bit!"
Thursday was my best day of the past 3. Friday was not QUITE as rough as Wednesday, but pretty bad again. The weirdest part of this whole pain flair-up was my...
Hearing: Whenever the pain of my neck, jaw and shoulder gets worse, my ear goes more profoundly deaf, I've noticed just this week. So this tell me two things. First, hearing is gradually getting some better since I now can tell a significant difference when it gets worse. Before, I think it was too "worse" all the time to notice any difference! Secondly, this would indicate to me (though I have yet to run the theory by any medical professional) that there is some sort of nerve issue at play, tying all these issues together. I'm not sure how eustation tube paralysis might or might not tie into my newest theory, but as the pain ebbs, the ear seems to pop quite a bit as a small amount (of still significantly impaired) hearing comes back online, so it seems all connected. (The right ear seems unchanged, still slightly muffled but measurably more functional than the left.)
Mouth/Speech: There are still small areas of my the front end and left side of my tongue and lips that are totally numb, others that feel rather "burned" (for lack of a better descriptive), as does quite a large portion of my left cheek. I am more bother by this at some times than others. I still think I only have taste buds functional on the right side of my mouth and I still can leak food or drink (or saliva) out the left side of my mouth. More than once, my mom or husband has had to either reach over and wipe something I can't feel off my face, or signal to me that I need to wipe my nose. My teeth still do not align well enough, my jaw isn't strong enough, and the feeling isn't informative enough that I can chew things on the right side. My speech therapist is investing getting me into an intensive vocal program to take advantage of this window of continued strides in the area of vocal control, but we are trying to arrange a special video scope of my vocal chords (to check on paralysis levels of my vocal chords) to find out if they might even might be considered as a candidate for this school.
Arm: Since I fairly recently addressed this topic in detail, I will just summarize by saying large motor function is clumsy, but seems to be stronger than a few months ago. Small motor function continues to be pretty much non-functional, though I do manage to force my way through a version of the Sign Language alphabet, as therapy, on a daily basis. I have also been intentionally working on stretching the tendons of my left hand on a daily basis. My pinkie tolerates this well, with each finger towards my thumb being progressively tighter and more painful. I have been excited that I have been able to release my grasp of objects, upon desire, twice, this past week! (Usually, I have a hard time holding on to anything, but if I manage to grasp it, I have to take it away with my other hand or someone else has to pull it away from me. Being able to release at will is a BIG DEAL!)
I tried folding some laundry again this afternoon. (Thank you. Mom, for continuing to care for this need for us!) I was reminded of why I get too discouraged by this task to usually even try anymore. Today's attempts were dismal disasters. :(
Bodily Functions: Not something I'm jumping up and down (not that I could anyway) with excitement to share with the world at large, so I won't go into detail, but so others know you aren't alone, I'll admit that I've still had two bathroom "accidents" even this week (one of each kind), and while I may go weeks without any, it is still not a fully resolved issue even yet. I have finally been able to drop all my stool softeners, as of just this week, though, thanks to a high dose of another medication I am taking again for some hormonal issues. Loose stools are a side effect and while I have taken the medication before, it has never been with intestinal paralysis before so they hit me pretty hard this time around! Another issue that remains short of full resolution is involuntary vomiting (usually just a burp that goes rouge, but still) or chocking, often just on my own saliva. The deep, painful acne has been having a party this week and both my (left side) chin and upper lip are quite the painful mess!
Legs/Feet/Walking: My right foot is much improved. I think I am going to have to buy better insoles for my combat boots as the lack of support seemed to contribute to my problems there. (After nearly two weeks of not wearing inclosed shoes so the foot could heal, a few hours back in them and a different part of my foot was sore for two days!) My left foot stills seems to get purple a lot, and my limp remains quite pronounced. I keep reminding myself that I "shouldn't" be alive and absolutely not walking, so a cane really isn't half bad.
Memory/Thought Process: My mother-in-law called me today. She asked me to remember two grocery items. Five minutes later I could only remember one and had to ask her to repeat the other. When I got off the phone and immediately called my husband, I remembered both items, but I forgot to tell him another important piece of information about this coming weekend. I talked to him three more times (always intending to tell him) before I remembered to pass along the information. I just this morning though to tell him two very important happenings in my parents' lives, that I have known for weeks, including my dad's surgery date (or that he is scheduled for surgery at all!) for next month.
I have several graduations to keep track of over the next couple of week's (including our son's eighth grade graduation) and I keep getting so messed up on dates. I keep insisting our son graduates next Thursday, but it is actually Wednesday. I can't even begin to tell you about the others! I hope we don't miss any because I'm so very confused!
I had one other important thing to share here. Is it surprising that I can't, for the life of me, remember what that was! :P
Edit: I remembered after I posted. I was just going to say how I will be so glad to finish this school year and am praying our daughter gets an opening by August, in the school where she is on the wait list for the fall, from the standpoint that I don't seem to remember almost any basic language rules and find myself totally frustrated (to the point of tears) by fourth grade grammar!
Dizziness/Balance: I am always dizzy to a certain extent and get more so with little provocation. The more tired I am, the more my world spins, especially noticeable first thing upon opening my eyes in the morning, late at night, or if I have pushed myself too hard and need to sit or nap and rest during the day. My center of gravity remains small, but even though I trip and drag and catch my left foot frequently on the floor or a chair I am trying to pass, or whatever, my standard comment remains, "Not bad for someone that is supposed to be dead." Not really a balance issue, but I don't know where else to put it; my tummy still continues to "clench" (flinch? spasm?) violently (like someone punched me in the gut) every night as I am falling asleep.
(By the way, if you had one thing you really wish someone had told you or you had known sooner in stroke recovery, what would it be? I am putting together resources on our resource page about the medical conditions I wish had been explained sooner, and that got me thinking of all the rich advice stroke survivors or caregivers could share with one another!)
Quote of the day: The same boiling water that hardens the egg will soften the carrot...