Calling Reno Locals

(Please pass along and re-post wherever you can. Thank you! If you are from northern Nevada, this post is for you. If you aren't in my neck of the woods, do you know anyone who might be?)

I thought you might like to know about my stroke recovery journey since I'm a local, Reno, homeschooling mom for 10+ years, forced into "retirement," or at least changing educational direction, due to health circumstance. More of my story is found at www.StrokeOfGrace.blogspot.com

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And this weekend: Yard sale, this Saturday, June 22, 2013 at 581 Secretariat Ct., 89521. 8AM - 2PM. Saturday only. Support a family in young mom's stroke recovery journey. Items for sale include homeschool curriculum and craft supplies (preschool through 8th grade, including My Father's World and Math-U-See), a dresser, a hide-a-bed couch, exercise bike, wheelchair, toddler bicycles and scooter cars, clothes, book, toys, and assorted housewares.

http://feedingbig.com/2013/06/top-5-yard-sale.html

http://juliesaidwhat.com/2013/05/29/yard-sale-tips/

Let's return to the LORD. He has torn us to shreds, but he will bandage our wounds and make us well... Let's do our best to know the LORD. His coming is as certain as the morning rain renewing the earth in the springtime. - Hosea 6:1 and 3

Open Wide

Here's where I sit almost all day, just about every day (at least when I'm home, not at a doctor or therapy, still taking up at least a part of nearly every day of my life!). It is where this computer (usually on my lap, not the side table, because I can't support my weight on that left arm due to pain and distractingly violent shaking of the arm when I try) is and where I connect with you, where my blog and my books are getting written, as well as where I do many of my therapies, like my therapeutic music program and work on brain strengthen computer programs. (My left eye still looks like I've been injected with Botox! Doesn't my emergency beeper make a fashionable necklace? ;) )

Tuesday's scope went well. They didn't even have to stick the camera down my nose, just my mouth, to the back of my throat! I learned a lot about my vocal chords. I have quite a bit of scar tissue from my intibation and some narrowing of my trachea as a result (since this isn't causing me breathing issues now, I just have to be sure all doctors and radiologist know it before I ever have surgery and am intabated again), but the vocal chord function is surprisingly, mechanically pretty good. I didn't know it was possible to have ataxic vocal chords (the involuntary shaking of my left arm and leg, attributed to the damaged cerebellum, is referred to as ataxia), but I still do, fairly profoundly at that (wiggly, vibrating vocal chords)! I have been told about the arm and leg (so would presume this applies to the voice box as well) that this will likely never be fully resolved.

It sounds like the doctor is going to refer me for further speech therapy, but vocally, the voice box is in pretty good shape though the left vocal chord is visibly smaller (slightly atrophied?) than my big beefed up right side, but able to open and shut (the issue they were concerned about with paralysis) quite well. I have a little sore throat after the procedure, but not nearly as much as I expected. The doctor encouraged me by saying I was amazingly articulate and I would make a fantastic and inspirational public speaker, we just need to work on the hesitation, breath control for phrasing, and occasional pronunciation issues, to help me master more smooth speech patterns, but pretty much all of that should be able to be addressed through continued therapy since the structural function seems to have been mostly restored now. This did my heart a world of good to hear!

Jaw and Face Stretches - Sorry you can't read my hat that reads, "Failure Is Not An Option!"

Kendra and I are discovering, as we get farther and father into recovery, that the differences in our injuries and recovery progress are becoming more and more obviously profound. I don't know how reliable my estimations may or may not be, but from my perspective, I seem to be seeing somewhat of a more rapid physical recovery than she is, whereas it sounds like Kendra is likely seeing more cognitive gains than I am? We realize that the nearly 6 month difference in our recovery journeys, still is rather significant at this stage, as things I can do today I couldn't DREAM of six months ago. But even with so much similarity, there are profound (sometimes painful, when we give into the comparison game) differences too. We are both thrilled for one another in every measure of progress, it is just becoming less and less of an identical journey than it was in the earlier months.

I mention this because I have made several stroke friends through this blog and I ask you to please don't let anything I post discourage you if you are not there yet. I know I am blessed not to face some of your challenges (I can't imagine being non-verbal, especially for months or years, for example!), but even if we aren't on exactly the same course or speed of recovery, there are likely some things in my recovery journey you may find yourself thankful to not be facing as well! I never want to hurt you by sharing my miracles. Please don't hesitate to share your progress (or frustrations at your areas of challenge) in my comments either!

"I say to myself, 'The LORD is my portion; therefore I will wait for him.'" Lamentations 3:24

Videos and Scopes

From Daily inspiration from Jon Acuff, via Facebook.

The strokes have given me a sickening and profound new fear of heights (I'm guessing due to their messing with the balance center of my brain). Love this picture! (Well, not at all the picture, as it makes me want to throw up, but both parts of the words!) True, all the way around!!!


What to write? I'm feeling fairly quiet this week. I'm rather out of ideas about what I should even share. So here goes randomness.

Let's see. First I want to tell you about an article at Five In Tow, titled Ordinary Days. It is a bittersweet little piece about an adult woman's reflections on her childhood loss of her own father. The bit that rather shook me was, "Someday, you’re going to slip right out of your body and your kid is going to be left grappling with the loss.  It’s kind of strange how one soul can be free and another weighed down by the same event.  You will be gone, and they will be here, remembering."

This made me catch my breath as I reflected on the fact that I nearly died a year and a half ago. For a long while I was mad at God and really thought it would be better for my family if they didn't even have to deal with all the changes in me. I just wanted to be gone, spirit freed. It has taken me well over a year to begin to understand their perspective, how the same event that could have been so freeing to me would have been equally weighty for them, for the rest of their lives.

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Tomorrow, I get a scope of my vocal chords (camera in through the nose, then down the throat). When I talk to strangers, it is still usually, "What?" with an occasional, "But the strokes didn't effect your speech, it sounds like!" With such a wide variant in reactions, I really don't know what to think! The scope should tell us what level of vocal chord paralysis still remains. It is required in order to evaluate me as a candidate for a new speech program I'm hoping to get into, on the advice of my current Speech Therapist. I am really focused on ST because I hope to have a public speaking ministry some day. Please pray I don't throw up on the techs (that I'm able to go at all) as I am pretty queasy today and don't want to gag tomorrow!

Next, I guess I should give an update on my weight loss efforts. The weight is still a battle. My system is doing better, but could take a couple years to find the combination that really gets it under control. Still yo-yo-ing within my same 5-pound window, so no loss actually. :( At least no real gain either, as there were a couple weeks there where I topped my regular little window and saw 170 for the first time in my entire life (the highest I even got pregnant was in the 130s to low 150s, depending on the pregnancy and what weight I started at).

Lately I'm about 164-168ish, but haven't seen the 150 for many, may months now. I should be/would like to be 120-125. My old "high" used to be 143, so 170 may seem an "I wish" weight to some readers (and I wish to in no way mock your struggles if my 40-50 pounds of needed loss seem minimal), but it is pretty hard to cope with for me! I love the article at MyFriendTeresaBlog on how if feels to want to hide from the camera if you aren't at your ideal weight! Tonight I signed signing up for Beyond Diet (if you are interested in signing up, contact me first as I will be happy to walk you through how I found a coupon for 15% off their services), a set of lots of healthy meals plans and message board support. Hopefully this will help with my post-stroke frustration in meal planning too.

I did read just this week that when the brain is working SO HARD to cope with the simple requirements of life (like breathing, heartbeat, circulation, etc.) it burns a BUNCH more calories than normal. So in addition to a feeding tubes, nothing by mouth, then baby foods in the hospital, this accounts for the dramatic weight loss there. I was down around 110 or maybe even closer to 100 when I got home from the hospital. While there, once I could take liquids by mouth, they were feeding Boost-laden chocolate milkshakes 6 times per day, just to try to up my coloric intake. I have to admit I rather liked that part and was fairly addicted to chocolate milk or milkshakes once I got home!

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I'm kind of thinking the whole brain work burning calories is why my doctor saw the weight gain as a good sign because my body was no longer burning every calorie (plus some) I took in, just to survive. She also said the gain provided more energy to burn off during my therapy sessions, whereas, continued loss would have left me too weak for recovery. Add to this massive metabolism changes, not being able to burn calories via walking for much of the first year, along with brain changes causing serious food cravings and lots of high calorie foods gifted to me that first year, and I guess it really isn't too surprising that at soon as my body stopped just burning to fight for basic survival, I ballooned! 


Still, I would like to convince my body that it shouldn't be hanging onto the pounds now! If only hours and hours of therapy each week were doing anything to melt away my growing buldges, but alas, no. I would like to think the creeping scales were, in part, attributed to muscle weight being higher than fat, but my huge belly bulge (that has been mistaken for pregnancy) tells me otherwise.

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My eyesight is still too messed up for me to feel safe/comfortable trying to drive yet, to see back over my shoulders. I have already seen so much improvement in such a relatively short amount of time that maybe someday it will still be possible? Two doctors agreed and my eye doctor signed off on my permission to reinstate my license months ago, but until I am confident in my lack of endangering anyone else on the road, I won't be getting behind a wheel. Risking by own life is one thing (like I do every time I get in the pool for water therapy), but putting anyone else at risk is simply not an option! It is a fine balance between the need to "get back on the horse" so to speak (not letting the fear of driving keep me from even trying) and the realistic evaluation of what I believe to be in the best interest of fellow drivers.

My feet are good (I was recently asked about the foot pain from my boots that had to be medically evaluated a few weeks back), though I've noticed if I'm up on them for a few hours (like out shopping after church), that my toes go numb and either or both feet start to really hurt, no matter what shoes I am wearing. I think a wheel chair still needs to be my default when we are out for long.

 Getting up once I'm down.

 

I'm not quite sure what to do about the post stroke pain, also called CPS, short for Central Pain Syndrome. (They say 40-60% of us get it.) It is getting pretty bad and there are not really any strong pain medications I don't react to. My left leg hurts most of the time, as do my shoulder, neck, jaw, and upper arm. My hand hurts quite often now too. Last week I almost had to quit water therapy because the water pushing against my left leg just hurt!!! But I move SO MUCH better in the water than out of it, the pain will have to get a lot worse in order to drive me out of the water. I guess I'm stubborn like that.

Hand therapy / recovery video with prior hyper-mobility (double jointedness).

Our daughter still says {yet another!) hurt foot, but she isn't complaining as much nor as often and she is able to do pretty much anything and everything on it now (she spent the day running around a water park last week, climbing the stairs, splashing and playing) so I am not too worried about the likelihood of it being actually broken anymore (as we thought from the x-rays, but the orthopedic surgeon decided not to cast).

Remember my rose garden? I have just posted a few updated photos I took there this week. over on my original post. But here are a few other views from my garden right now. :)

General exercises (part 1)

Not much else going on here. All the kids are home for the summer. {Happy dance on my part, at least in my heart, since not in my feet! :) } We still haven't heard anything about school for our daughter, so I would really appreciate your prayers for an opening there, and to put our minds to rest, we would love to hear this news very soon! We are working on moving our oldest into his own room (he has been sharing with our youngest and we no longer need a school room). All the kids start the new school year on Aug 12 (early this year)! Thanks to the home school moms who are helping me sort curriculum, clean out or old school room, and are evening hosting a garage sale for us this next weekend!

Single-handed hairdo.

 I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me. - Galations 2:20

Learning Contentment

From Facebook

My "baby" boy is a high schooler now. We attended 8th grade graduation last night. *proud sigh* He did incredibly well adapting to 8th grade in a traditional classroom, joining the system half way through the school year. I told him that I felt like it was "our" 8th grade graduation, as I had overseen his entire educational career up until my strokes and even again for the first half of this school year.

When we got there, the gym was decorated in lots of balloons. My previous latex reaction flared up, the worst it has been since my week in the ICU (where a "latex free" hospital had to order special catheters just to meet my needs). I was in the gymnasium only a matter of seconds before my stoked eye was burning and watering. Soon the entire left side of my mouth, anywhere that the feeling hasn't totally normalized yet, basically that entire side of my mouth) felt like that significant "burning" sensation you might know from when an arm or leg "falls asleep" and looses blood flow long enough that it hurts to get circulation going in it again, more than just annoying prickles or pins and needles, but actual pain.

I took a Benadryl when my throat started to tighten and right eye started to burn and water too and even the right side of my mouth started feeling funny. I also moved my Epi-Pen to the top of my purse, for easy access if the reaction continued to progress, but thankfully never needed to use it. This kind of thing so frustrates me because I am not wanting nor trying to draw attention to myself and get so tired of always being the one to cause problems. I just wanted to enjoy my son's moment in the spotlight!!! I wanted to cry at the though I might need to leave.

Next I had a full-on TN attack, the worst I have yet to experience. Not sure what I am talking about? This video explains.

This (along with the left side of my eye and face being my first alerts to danger) was a new post-stroke facet to my reaction. It was bad enough I asked my mom to dig through her purse to see if she had any Tylenol. She only had Aleve (that I haven't taken since the stroke due to the stroke risk warning on the bottle, even though this would be totally unrelated to my cause of strokes), but I was desperate enough that I took one.

From Facebook

Hearing, that I normally would have expected to be quite diminished during this episode, actually seemed to be heightened, was intensified to a painful level. I actually had to plug my "bad" ear because the sound of the crowd prior to the start of the event was too intense for me to process. Fortunately, this symptom began to settle about 15-20 minutes into the graduation.


My mouth is still more painful and numb than normal, today, but so much better than last night. But the throat relaxed with about 10-15 minutes of the dose of Benadryl and the intense pain in my eye/ear/face/jaw started subsiding after about 1/2 hour. I still have a bit of a sore throat today, but no breathing concerns.

Thank you, so much, to our friend Melanie (and to her husband, Seb, and this year to her young son as well), who have made sure at least one family member has run the Never Quit 5 K in Florida each year since Kendra and I stroked, in our honors.What a humbling blessing!

From Facebook

We had a frustrating situation (that left my mom and a giggling so much in the bathroom, we thought we would get kicked out of the lab today). My blood draws often take multiple pokes and sometimes up to an hour. Today, I had a new phlebotomist and (praise the Lord!) she got all my blood successfully drawn in a matter of minutes, on her first poke! The problem came with my urine sample that I simply could not manage to collect. As I've told my husband, I still have major problems when it comes to peeing on demand.

When I've got to go, I've got to go. If I'm someone tells me I must and I'm thinking about it and need to go, I can't. I think this comes from all those weeks in the hospital when I could only attempt to use the restroom on the nurse's schedule and often couldn't go by the time my call button was answered, even if I really had a full bladder by then. "Shy bladder" the nurses called it. Today, the lab tech had gone on and on about how much urine I needed to collect for her. I told my mom that my bladder was so full that I easily should have been able to give her the sample as soon as we got there, but the more the nurse emphasized the need and the amout, the more stressed and anxious I grew. By the time I tried, I couldn't go at all.

I asked my mom to come in and run water and tried all the tricks I know, but nothing was working. I tried twice, both before and after the blood draw and after drinking about six cups full of water. At one point in the giggle fest I asked my mom, "So how am I going to blog this one?" That question just got us laughing all the harder, still without the needed result.

Finally we ended up leaving the lab, running some errands, and taking my little cup with us to bring back to the lab by the deadline an hour away. On the way home from the lab, after our successful (finally!) delivery, I turned to my mom and said, "Now I need to go to the bathroom!" The rest of the day I could have filled a boatload of those little cups! I now have a supply of cups of my own so I can collect at home and bring to the lab the next time I need to.

From Pintrest

I told the lab tech what has become a standard line for me, all of the past 19 months, but especially the last few weeks. "It is what it is." I don't remember ever hearing that saying before, but in searching the web, lots of other people seem to say it too, so I guess I can't claim it as my own, like I thought I could. To me, this is acknowledging the reality of whatever given situation, but also recognizing my own inability to change things in so very many cases. I am learning that much of the time I can fight (usually without any change) what I don't like, or I can relax and roll with the ebbs and flow and hard knocks of life. Relaxing ultimately tends to be much more productive, less painful in the long run.

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Philippians 4:11-12 "Not that I was ever in need, for I have learned how to be content with whatever I have. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little."

19 Months Tomorrow

Tomorrow is 19 months. Time to stop saying that my strokes happened "a year and a half" ago. Well, technically, I guess I still could as it was about 18 months ago (Thanksgiving morning, 2011) when I had underwent two surgeries that marked the end of the ongoing strokes.

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, "Woke up flaired up in extra pain from mid-arm/back to left eye. Couldn't turn my head to the left most of the morning. More mobility now, but still really hurting. Rubbing muscle rub into my neck and shoulder like crazy. I think this is the price of too many hours in the car Sunday and Monday?" on a CPS form. When asked if my eye itself was hurting, I replied, "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.)

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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.

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All this complaining (sorry, my excuse is detailed documentation) and I still don't hesitate to say it it all so much more tolerable, life is so much more liveable, than it was last year, than it was even a few months ago! Take heart, fellow strokies, I didn't believe it when I heard it, but it really does get better and better and joy can return to your world once again! 

(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... - Dr. James Dobson

 When the cares of my heart are many, your consolations cheer my soul. - Psalm 94:19

Down She Goes...

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I was back in my bedroom alone this morning. The kids were at the other end of the house and my door was closed because I went back to get dressed, so there was no way for our kids to hear me.

I got off balance trying to reach for an article of clothing just outside my (very small) center of gravity. It was like slow motion. I could feel and process what was happening, but my best efforts could do nothing to stop the process.

I reached out and grabbed for anything I could grasp. In this case the closest things were my skirts which slowed my fall a little, but I managed to yank right off of the skirt hanger. I literally heard myself say, in resignation, "Down she goes!" when there was nothing I could do to stop the drama from unfolding.

I landed, kerp-lunk, down on my shoe rack. Everything froze until the shoe box under me started to crumple and I fell several more inches, bit my bit, to the floor as the box continued to collapse under my weight, reminiscent of when I landed on a plastic "milk crate" style file box in the office and broke it in jagged, piercing stages, a few weeks ago.

I wasn't really hurt this time. A few stubbed fingers and toes and a couple bruises and scratches, but nothing significant. The interesting thing came when I tried to get back up off the floor. I found myself rather stranded, with no solid hand holds anywhere in reach and my legs too crumpled under me to be able to untangle them in the cramped confines of the closet.

After struggling for well over 5 minutes, I was afraid I would have to push my emergency call button, not for any kind of medical emergency, but simply because I was so stuck and unable to resolve issues on my own. I figured, if nothing else, the alarm would notify my kids to come running (though the only way they could have helped was by bringing my walker so I could have used it to pull up on), and canceled the medical call if I was no longer stuck by the time the operator spoke to me through the call panel.

The thing that kept me from doing so was the knowledge that my parents were coming to take me to the gym in half an hour. I figured, worst case, my mom would come into the house, come to check on me back in the bedroom, and find me still sitting in the closet in my nightshirt. We would likely miss our workout, but at least she would help me off the floor.

After about 10 minutes of struggle, I was able to squeeze my fingers of my right hand behind a metal panel screwed to the closet wall and hook my left hand into the door jar hardware. This gave me enough leverage to get up on my stronger knee. I then placed the palms of both hands on oposing wall, and push myself upright once again.

With only about 15 minutes left (it would have taken me longer than that to get my clothes on when I started dressing myself), I was dressed and ready to head out the door when my parents got here! :)

When I said, “My foot is slipping,” your unfailing love, Lord, supported me. - Psalm 94:18

Inevitability

I saw my neurologist recently. I asked him about the fairly intense variations of pain that I feel on my entire left side (and occasionally in waves on my lesser-stroke-impacted right as well) now, and have dealt with in varying intensity (it has built over time), since the first strokes. His answer was not any surprise at all, simply, "It was pretty inevitable."

(He offered me various nerve and pain medications, but since I have been allergic or in some other way pretty reactive to everything I've tried, I just keep some medication that I have fairly well tolerated, on hand for my very worst pain. If I absolutely HAVE to take it I also take Benadryl, just go to bed, keep the EpiPen handy, and know I will at least hive out if it is my best case reaction, so basically I just need to "tough out" the pain otherwise. I keep reminding myself that before pharmaceuticals, in people that didn't know about herbs, also a real potential danger zone for me, people didn't even have this option of emergency medication.) 

He went on to say that with the extent and specific locations of my strokes, "The pain is an inevitable result, just like it is pretty inevitable that your left arm will eventually lock in against your chest and become totally unusable."

Oh, really? I was startled by this prediction and kind of don't know what to do with this news.

At first I didn't think much about his pronouncement, I guess rather in a state of denial. Then came the weight of the inevitability, as my husband put it, "We need to know these things so you can prepare for the future." The doctor didn't say so, but for some reason the 3-4 year marks are my mental picture of when this might happen by.

Then came anger and a sense of "why bother," asking why I had worked SO HARD this past year and a half to restore large motor function of this arm (we have also worked on fine motor skills, but they have mostly refused all efforts at rehabilitation, so please don't hear anything I saw here as "If you only try harder, you are garenteed recovery!" since that is totally not what I'm saying, just processing my own thought right now), if I am only going to loose it all in the end anyway?  If I am to live with only one functional arm, isn't my time better spent in learning to perfect one-handed function, rather than trying to coax function from a reluctant arm that is destined for total loss of functionality anyway?

Ever wonder how to open a banana with just one hand? Pinch the "wrong end" and it opens right up! :) 

- Picture from Pintrest, tip from my husband!

I talked to my speech therapist about this (the first professional with stroke experience I saw after this appointment) and she was rather SHOCKED that he had actually given me this news, especially in light of my miraculous progress thus far. She said that if I weren't continuing to push myself so hard, or had refused therapy at all, she could totally see how I likely would have not have ever regained the limited use I now do have of my arm, thus locking it into non-functionality, but she has never heard of a "bell curve" in stroke recovery where a person fights back, regains something, then looses it again anyway.

Maybe my doctor was having a bad day or I caught him at an unguarded moment? Maybe he was just discouraged that one area he was hoping I might avoid was a full-blown reality now and he was voicing his concerns for the future? Anyway, I now know what he really believes and I guess my rebellious side is flaring now.

Will I eventually loose (again) the total function of my arm? Maybe. Maybe not. Only time will  tell. But the "why bother" is answered in that if I am going to loose function, giving up on therapy will only quicken and insure that outcome, while the continued push is my only possibility of proving my doctor wrong.

I met a lady at the bank last month. Her brother had also stroked in his 30s (I believe maybe 6 or 8 months before I did). She said he resisted all attempts at therapy. He is still in a wheel chair and not as far along in recovery. I pray for him, and as I told his sister, totally believe there is still physical reason to hope if he were ready to commit to therapy even now. But it was good inspiration for me to see what a year and a half of hard work (and God's grace!!!) has actually yielded.

Pintrest

My ST did remind me that it was equally inevitable that these strokes would kill me. When I didn't follow the doctors (plural!) expectations there, I was "NEVER" going to walk nor live independently again. In the words of Inigo Montoya, "You keep using that word. I do not think it means what you think it means."
 

From Pintrest

(I like this quote too. It seems appropriate!
Westley: Why won't my arms move?
Fezzik: You've been mostly-dead all day.)

And on the topic of recording this journey:
Count Rugen: [calmly] As you know, the concept of the suction pump is centuries old. Really that's all this is except that instead of sucking water, I'm sucking life. I've just sucked one year of your life away. I might one day go as high as five, but I really don't know what that would do to you. So, let's just start with what we have. What did this do to you? Tell me. And remember, this is for posterity so be honest. How do you feel?
[Wesley cries and moans in pain]
Count Rugen: Interesting. 

(Quotes pulled from http://www.imdb.com/title/tt0093779/quotes)

Pintrest

Kendra, mineral makeup isn't keeping me clear from deep, painful, cystic acne anymore, so I might have to give coconut oil a try too (thanks for the suggestion!), but the minerals (without bismuth or cornstarch) still do help a lot. I have a magnifying mirror and when I get really close, especially on my chin, and somewhat on the rest of my face and neck too, it looks like someone has drawn a line right down the middle of my face. The less stoked side is realitivly clear and smooth, while the left side is all bumpy and rough with underdeveloped acne, interspersed with the deep, nasty stuff. I have very little "regular" acne now, on either side of my face, but the yucky stroke-related kind is almost exclusively relegated to the one side now. I have some scars and discolorated areas (cover-able with makeup for the most part), and still get some renegade junk on my face (mostly nose, not often cheeks nor forehead now, though these can still happen) or neck or shoulders, but the constant patch seems to be on my left chin and sometimes beside my mouth or on my upper lip now. So I want to offer you hope that (as we already had concluded) there is no doubt that skin is impacted by strokes too and it really can improve! {hug}

 “I wait for the Lord, my soul waits, and in His word I do hope. My soul waits for the Lord more than those who watch for the morning …” Psalm 130:5-6