Taking Care of Marie,Taking Care of Me

Well, I’m most of the way through taking care of my great grandmother, Marie.  My Nanna and Pawpa get back from their trip on Friday.  It has been a good time, even with the challenges.  LOL…Marie’s deafness requires that the TV be turned up painfully loud.  The first few days I was seriously tempted to go buy some ear plugs!!  Then I adjusted to it.  I also can’t seem to find a movie she really likes.  LOL, she says “I’ve never seen movies like the ones you watch!”–these are Hallmark Channel movies!!  Seriously.  I also recorded Forrest Gump, Catch Me If You Can and a couple others that were more a normal type of movie that I would enjoy.  Nanna had also recorded “Legally Blonde” so tha tI could watch it, I went to watch it with Marie, and she kept saying that I watch the strangest movies and ….that she’s never seen anything like it.  LOL, Nanna assures me that Marie has seen the movie 2ce already…   The one movie she REALLY likes so far is “While You Were Sleeping.”  She was saying all the normal “I’ve never seen movies like this” and “I don’t understand” until she finally got the movie.  About halfway through I asked again if she was enjoying it and she yelled good and loud “It’s just GREAT  🙂 ”   Yeah, I could hear her smile…I was sitting in a chair behind her and couldn’t see her face.  LOL.   kept it on the tape list to maybe let her watch again this week before Nanna and Pawpa get back.

Nanna and Pawpa really seem to be enjoying their trip out west.  They call everyday and talk to me for a minute or two and then talk to Marie.  Nanna wants to bring me a souvenir.  She wants to find something nice, but if she can’t I’ll have a hat and shirt from somewhere I’ve never been.  Which is neat, LOL.  I’m just glad they are getting a good break from the daily humdrum, and stress.

Everyday I get up, make breakfast, cleanup, read the paper or play dominoes…then maybe watch something or go on the porch.  Then I fix a snack or lunch, clean that up and play dominoes.  Marie doesn’t feel good much anymore so sometimes she will go take a nap.  That’s my FB time.  Then I fix supper, eat, and clean that up.  Marie ends up helping to cleanup at least one meal a day…which is good 🙂  Marie will then watch Wheel of Fortune and Jeopardy and then we watch a movie.  I do think she must enjoy the movies because despite all the she says of the movies being unlike anything she’s ever seen…she always makes sure we watch one.  LOL!!

On Mondays, a lady comes and cleans the house–she’s really sweet and we have neat health convos.  She makes me want to research on alternative ways you can help a patient whose had an organ transplant.  Very fascinating…because that would be quite a tricky thing!!!  On Tuesdays and Thursdays Jane comes, and while Nanna and Pawpa have been gone, she has helped with the errands and appointments.  Jane is a real sweetheart.  Last weekend a lady named Belle came and she lightened up my load for the weekend.  I did most the cooking…but not the cleanup.  And I got to sleep in, WOOT!! A couple that my grandparents know, Sonny and Joanna came over on Friday morning.  Sonny wanted to go fishing in the river.  Belle, Marie, Joanna and I went to Lewisburg to visit Marie’s sister, who is turning 85 this month.  It was great to get to meet her.  🙂  I am so glad that Belle came and that Marie did get to go to Lewisburg.  Belle and I also got to see the greater part of the movie Avatar together, and she took me to BooksAMillion so I could get a tea and look at the books.  I skimmed through a couple books.  One was on TFT and the other was another water book by Masaru Emoto.

Lyme cycle hit on Thursday morning…I was awoken in the wee hours and morning multiple times by my right kidney in an absolute fit.  It hurt soo bad.  I should have taken a hint from my cloudy urine on Wednesday evening and night.  I didn’t sleep well due to that and was tired the next day.  I knew I needed to reserve energy so I did.

A little bit of kidney pain on Friday, but I was just overall tired and more sore in my joints and had a hard time feeling positive.  Part of the problem with that was that Joanna was making all kinds of job suggestions to me, while on the way to Lewisburg.  She is thinking in the old school mentality in old school WV–she thinks I can walk in any doctor’s office and get a job in billing or even phlebotomy.  I wish it were that way, but no, these days you have to go to school for 2 years for any of that.  I live in a so-called “progressive” state where you can’t do anything but flip hamburgers or work a cash register as an entry level job.  A couple of her ideas are not anything I could do while trying to recover–and she doesn’t get that conventional college is really not an option right now and spending time studying for something that only raises pay as a stepping stone is really a waste of time.  She feels bad that I’m shooting down her ideas…I assure her I’m not offended.  Finally she comes down to earth a bit on that suggests places like TCBY and fast food.  I had to explain to her that I tried food service and it about killed me, my wrists are not able to scoop two scoops of ice cream much less all day.  I have a battle in my mind realizing that I also would dive into the ice cream and take advantage of that wimpy poisoning employee benefit at times when the will is weak and my critters are trying to control my taste buds–but don’t speak about that.  She suggests I exercise my wrists as if it’s really simple and I felt like she didn’t believe me anymore.  I explain it’s not a strength issue I can lift up to 75 pounds…without much risk of harm.  It’s the joint and the nerves that are messed up and show her how my wrist cracks because they’re so bad.  She suggests craft stores and big stores in the mall and walmart.  I have to explain that if I am in any of those stores for more than 15-30 minutes of just shopping that it makes me get headaches, all my joints start aching, exhaustion, nausea, sometimes dizziness.  I have to be able to withstand that environment for a 4-8 hours day.   Also, these are the places that highly perfumed people love to go!  I tell her that when I worked at Panera…people would come in wearing perfumes I was allergic to, and I would be hanging on hard to the register to merely remain standing, and I was too dizzy and unable to think clearly enough to get their order right.  She looks either absolutely dumbfounded or resolved that I don’t REALLY want to earn any money–I wouldn’t let myself judge which expression she meant because I was too depressed to trust my judgment.  She tells me that if I “just” increase my exposure to the things my body can’t handle that I’ll learn to withstand it.  I feel like she questions the reality of my situation simply because I don’t have gray hair or wrinkles on my face.  I’m thinking inside of me but know I can’t say THIS cause she’ll be confused even more:  I can’t tap all day long or have to get NAET to my workplace anytime I get a day off.  Instead I say that it was overexposure combined with an infection suppressing my ability to handle these things which is why I’m allergic now–increasing my exposure can do nothing but make me sicker.  She said “Well, I guess you need to live in a bubble.”  I’m kind of like “yeah” and mention where I DO have job apps in…6 diff places in my town! and repeatedly putting them in.  She then suggests Social Security Disability–why not apply for it.  I say that they won’t recognize Lyme, the real cause–I would need to get an intentional misdiagnosis, and more importantly, that it’s not the government’s place to take care of me when this type of problem comes up.  It’s the place of my family and church to support.  My family supports me as best they can.  I want to exhaust all options before I ask the church to be of support to me monetarily.  I really want to have a job I can do without detriment….even if it does mean I’m a bit prideful.  The conversation seemed to end there.  I’m not sure if it was my stance against social security–which she feels she is “owed” as a retired citizen or the pure emotion at this point.  A few minutes later she says…you could be a sub teacher in a school. I said I’d love too but they require a college degree for that now.  Then she says “What about tutoring? It’s all on your terms and good pay per hour.”  I’m delighted that she thought of something practical and possible…and plus it’s not something I had really thought of.  I was so glad she thought of something that was useful…and told her “I know that you are only trying to be helpful, and I’m so glad you suggested tutoring…that is one I can seriously consider!”  I’m glad that things ended well, in words.

Saturday I didn’t feel great either, but ticked alone and enjoyed the day anyway.  I was also well overdue for my period, and I felt that physically but thankfully I don’t believe I was too crabby.

Saturday night I couldn’t sleep until 3:30 am on Sunday….when I had given up and gotten up to take 1mg of melatonin.  My joints were hurting so bad that—it’s horrible to say, but I just wanted someone to take off my arms and legs.  Everything hurt as if it was on fire and pressure deep inside but with a  tearing quality too…my fingers and toes, wrists and ankles all he way to where my shoulder blades rest on my back and my femur to my hip.  It was horrible, it’s that torture that won’t let someone exhausted fall asleep. I just chewed up the pill that one is meant to swallow and then took some water to get the strange chalky non-taste out of my mouth.  Don’t know why but one thing about melatonin–the pain either actually goes down, or my nervous system is calmed to the point that the pain being created isn’t really there, or else the sleepiness overwhelms the pain.  I don’t know…but if I chew the melatonin, in 5-10 minutes my torture is over.  Sad it took me so long to remember it. At 3:30 am I knew the idea of making church was lost.

I didn’t sleep very deep though that night and was very tired on Sunday.   So I woke up to the noise of dishes being clattered together and put away. I wanted to fall back asleep but couldn’t–tried for 40 minutes and realized I was laying there wide awake and got up.  So only got…5 hours and 30 min sleep that night.  After breakfast we watched a Dr Stanley sermon and then I got on my computer and downloaded a sermon by my Pastor.  I was seriously missing good reformed preaching!!  I got it on my mp3 player, went to the park and listneed the sermon and swung on the swings.  I felt I’d had enough of the swinging after 10 minutes so walked around and then came back tot he house and sat on the front porch, listening the whole while.  It was good–Salvation from Beginning to End.  Felt a little reenergized overall.  I went in to clean up the dishes, and as I was finishing up, I felt this really bad pain.

It really hurt…just beside my hip, right side, a little towards the bellybutton,  I knew to be concerned…cause this is where you appendix is.  It was strong pain but I could stand up straight.  The pain was almost like a string deep inside being pulled on…going from up to down and pain radiated out.  the whole right side of my abdomen was sore as I palpated that area to get an idea of inflammation–all the way up to just below my liver.  I didn’t feel like it was appendicitis so I just drank some water.  I have had pain here before, once it lasted for 2 weeks and was so bad I couldn’t fully stand straight.  I have on/off twinges of pain there that my acupuncturist in NC said was my ileocecal valve not moving right.  I’d never really felt much burning heat with it, that was different…  I let Belle know wasn’t feeling good, where it was and all and the possibilities I knew of:  ovary not happy, appendicitis or the ileocecal valve.  I kept quiet so Marie couldn’t hear–I didn’t want her getting all scared. We were just starting into a game of dominoes, so I texted a friend who is pretty good with energy testing and asked her to test what I knew was possible.  I made the dominoes game my decision time frame–guessing about 45 min.  If no answer back or a “go to ER” and pain continued or worsened–then ER it would be.  If my friend didn’t say ER, and the pain let up by the time the game was over…then no ER and decisions will be made if pain comes and goes.  Finish dominoes…pain almost all gone and text from friend saying that she doesn’t think appendicitis but not sure what exactly as it wasn’t anything I suggested.  Stand up from dominoes game and walk — OW.  We get in the car to go to lunch and the pain continues–I call dad to give him heads up that I’m considering ER if anything worsens.  Also text my chiro when I realize this is VERY similar to the pain I had 2 years ago…that lasted for 2 weeks.  My chiro sent me a homeopathic remedy and it worked back in 2008.  My chiro called me back…oh I’m so thankful he did.  He suggested two things I hadn’t really thought of:  ovarian cyst, or a blocked ureter.  Both are definite possibilities, but the ureter thing I thought really made sense because of the kidney stuff from the other day, and the cloudy urine the night before.  If so..it could be infection or a kidney stone or both.  IDK which, infection of some sort is definite at least in the “lowgrade”–cause Lyme (and Co) loves the urinary tract. I could be right or wrong.  The pain came/went in 45 min waves over the course of 4 hours and then pretty much has remained 1-5% as bad as it originally was.  A couple of times may have spiked to 10%  but not long enough to concern me.

Then Monday, I finally started my period…after riding a small wave of energy and going out for a walk and letting myself run a couple sprints.  I enjoyed that but the rest of the day was PAIN.  I was hurting really bad, and didn’t have anything I could use to deal with the pain.  I searched the house, and I can’t believe it, in a house which goes with mainstream medicine I can’t find ANY ibuprofen.   Nothing but aspirin which I have a strong gut feeling to not take.  ugh…NONE that I can take. So I took an extra Wobenzym just hoping that may help and laid down. I was glad that the pain was very different from what I went through yesterday.  The odd thing with me is…it’s not just the normal cramping and blah for the entire area and being tired, all my joints hurt horribly too–if Lyme’ss having fun in my joints today, that extra Wobenzym had better do some good kicking!  One good thing is:  This may debilitate me for a day or two, but I dont have to worry about a dirty ER or eager surgeons.  LOL.  Joanna and Sonny came over, as we had planned on Saturday, to play dominoes with Marie.  I laid down for their first game but joined when the menstrual pain is less. My joints were still as on fire as ever…and I learn that my chemical sensitivity is way up when I walk in the dining room and taste Joanna’s perfume before I even smell it–it flares my joints, makes my head twinge and buzz, and I was disconnected from fluid thought.  I ask her, trying to sound really nice and not accusing, if she’s wearing perfume.  That look comes in her face from the other day…the one I wasn’t sure was disbelief or pure confusion.  She says she is wearing exactly what she was wearing in the car to Lewisburg the other day, and it’s only very light.  I say “I can taste it.  I know you didn’t try to make things worse or anything, but this is just a bad day for me.” and don’t allow myself to say more on the subject.  The walking to get downstairs had my pain through the roof again too, so I ask Joanna if she happens to have some Ibu or something for pain.  She says she does have Ibu and that seems to resolve ssome of the tension regarding the perfume.  She finds her Ibu and I discretely MT for 1.5 pills of it, and in about 45 minutes the pain starts going away.   Yay!  Thanks, Joanna.  🙂  Interestingly, it’s the menstrual pain that goes away, not the joint pain at all.  Only a little of the MCS symptoms reduce…I bombed the game of dominoes I joined, but by the end of it I was able to act like myself…

Whoah, time escaped as I wrote this!!!  lol…goodnight.


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