Tuesday, December 8, 2015

Worries

The holidays are fast approaching and I'm a hot mess lately.  As many of you know, I've had trouble with my thyroid for almost twenty-three years, or in other words, long enough to know better.  I've seen more doctors than I can count and was even put in the hospital once, all to no avail.  I have times of grace, where my symptoms are still there, but down to a dull roar.  The reprieve is wonderful but I'm not naive enough to think the good times will last.  The other shoe always drops.

And drop it did, in October.  I was feeling awful, as if I was coming down with the flu; migraine headaches, extreme muscle soreness, and heart palpitations.  Heck, 'palpitations' is such a weenie word; it was more like Jackhammer Heart Syndrome.  Blam, blam, blam, blam and then an eerie cessation of nothingness, followed up by a huge BLAM and so on and so forth.  Like Redd Foxx on the old TV show Sanford & Son, "It's the Big One."  But so far so good, I'm still typing this, so the Big One hasn't happened yet.  I knew my symptoms were due to my thyroid; I was either overmedicated or undermedicated, my symptoms are virtually the same either way.  My heart will bang around like a moth running into a yard light in either instance.   Only the lab test can confirm my status. 

I managed to get a doctor's appointment with my general practitioner in October.  I couldn't get in any earlier than mid-November to see my integrative MD since he was booked solid, so I pleaded with my GP to run some lab tests for me.  He wasn't too keen on complying, especially when I asked for two different thyroid levels conventional medicine doesn't see as necessary, Free T3 and Free T4.  Conventional medicine solely relies on TSH (thyroid stimulating hormone) for diagnosis of hypothyroidism, but when you are on a T3/T4 med as I am, the TSH is basically meaningless, as the pituitary will be suppressed.  Ok, I digress, this is already boring enough, suffice it to say I've been around thyroid disease long enough to know what I need drawn for diagnosis.

  I argued for the tests I wanted and I won, or thought I had, until I arrived at the lab to have them drawn and saw he hadn't ordered what I'd asked for.  I told the lab technician to please change the order or at least add on the ones I wanted done.  She was of course, flustered, since the doctor's word is law, but I told her I'm the one paying for these tests out of pocket, I will be taking the results to my other doctor, so please comply with my wishes.  She made a phone call back to my GP and finally, the correct labs were drawn.  Nothing is easy with thyroid disease, but you have to advocate for yourself and fight the good fight because no one else will.

My levels came back too high, I was taking too much medication.  I called my integrative MD (the GP washed his hands of me) and was told to cut back on my meds until I saw him November 19.  Ok, will do.  But within a week or two, the heartburn started up again with a vengeance and the headaches were even worse, though my heart was calming down a little bit.  My new integrative MD is (thank goodness) very reasonable and when he saw me he could tell I wasn't feeling well.  In Thyroid Land, it takes about six weeks on a stable dose of meds before your levels even out, so retesting is fruitless until you reach the magical time frame.

 I once again had done more reading and research into my condition and found some interesting information about my medication and brought this to my appointment.  And bless his heart, the MD didn't get all haughty and call me a hypochondriac or tell me, 'Don't bring your 'Dr. Google' diagnosis in here'; he actually was interested in what I'd found and said he'd do some additional research and get back to me.  He also ordered some additional lab tests, too.

Being that my appointment was the week before Thanksgiving, I figured results would be slower in coming back, and there wasn't much I could do about anything anyway except try to take care of myself the best way possible, eat well, try to sleep.  I cut way back on my exercise for the entire month of October and November; I wasn't recovering from my workouts and delayed onset muscle soreness was plaguing me terribly making heavy weight lifting agonizing.  I stuck with walking for the most part along with some gentle stretching.   Even while treating myself like a Special Snowflake, I wasn't improving.

Two weeks went by and I heard nothing from the doctor's office, so I finally called them.  Yes, they had the test results back, yes they had called in the additional medication to my local pharmacy the day after my appointment (Really?  I've been waiting for fourteen days and no one called me? but ok, never mind, I'm just glad he agreed to let me try it).  And my lab tests for some other things came back in the normal ranges; but.......my test for one other one did not.

It appears I may have Lyme disease.

Oh, dear.  The nurse said it is not a definitive diagnosis, he will have to do more testing, but he wants to wait until January to see how I respond to the thyroid med change first.  Lyme disease is yet another quagmire of controversy; conventional medicine acknowledges it exists, but also insists one course of antibiotics is all that is needed; basically a one and done deal.   If it were that easy, I would rejoice, but those patients who have had the antibiotics and still suffer beg to differ.  They do not feel better after one course of antibiotics and go back to their doctor who flatly tells them their symptoms are somatoform; you had the treatment, you are cured. 

And the patient goes home, grabs a dictionary to look up the word 'somatoform' and becomes angry when they read the definition:  any of a group of psychological disorders (as body dysmorphic disorder or hypochondriasis) marked by physical complaints for which no organic or physiological explanation is found and for which there is a strong likelihood that psychological factors are involved.

Hurrah, it's all in your head.  And since that's what I've heard about my Hashimoto's hypothyroidism for the last two decades from far too many doctors, having the possibility of Lyme Disease makes me want to run screaming from the room, because no conventional medicine doctor is going to take me seriously Ever Again.  Except I don't run very well these days.

Ok, so that's the lowdown on me and what's been going on here for the last few months.  Now let me move on to my biggest worry.

Mom.

Oh, poor Mom.  She hasn't been feeling well for some time now, since early spring.  I've taken her to the doctor many times, most recently yesterday morning.    She is scheduled for a CAT scan tomorrow morning.  She complains her tummy hurts and I do believe it does, but so far the doctor hasn't been able to find a cause.   Mom always felt the pills were making her sick and then declared she wasn't going to take them anymore. We talked to the doctor about her symptoms and he agreed to remove the statin, gout, Metformin and three blood pressure meds from her pill load, leaving her with only two, a water pill and Nifedipine.  For about two months, she seemed optimistic with the change and was taking her medication willingly.

In mid-June I dropped the ball and fell into a state of complacence when she told me she could handle taking her own medication when things got so busy around here.   Joel and Abby's wedding was upcoming and we were scrambling to get the gardens in tip top shape for the big day.  And then we had other weddings here and garden tour groups; there were people here almost every day this summer and into the fall.  And once fall finally arrived, my wonky health issues wouldn't let me ignore them anymore and everything came to a head at once.

 I had been giving Mom free rein with her two medications, I was filling her little pill dispenser and leaving it with her each week and dutifully calling her while I weeded every day, "Did you take your meds yet?"

"Yes, I did," she'd say.

And dummy me, I believed her.  But subtle things were showing up, she was forgetting more and more and getting confused, so I went up there one morning and saw that her daily pills were still in the box.  I went to the refrigerator and retrieved her water bottle, opened up the pills and handed them to her.  She looked at me stonily and said, "I'm not going to take them, I feel fine."

"Why did you decide to stop taking them today?" I asked.

"What makes you think I've been taking them at all?" she countered.

"Well, when I call you and ask you if you've taken your pills and you say yes, I assume you are telling me the truth," I said.

"I was taking them, I didn't lie.  I took them and flushed them down the toilet."

Ok, she wasn't lying, she did 'take them', I guess, and as she added, "That's where they end up after I take them anyway."

Feeling guiltier than ever that I'd let the festivities and events of the summer and then my waning health get in the way of staying on top of this situation, I asked her why she was doing this.  But really?  What is wrong with me?  I insisted she take her medication and with a token show of belligerence, she finally did, but every day was a struggle.  Whenever she takes her pills, she has a stomachache.  In her opinion, the pills are causing the stomachache.  And I'm forcing her to take the pills, so long story short, she has a stomachache because of me.

 I know full well she is not in total command of her faculties any longer, but she's not all that bad, considering she's 95.  She actually came to the garden this fall and helped me with garden clean up which is something she hadn't done for well over a year.  I tried to give her an easy job near me so I could keep an eye on her, so I took her to the Quarry to work where she could sit on the big stones and reach the dead plant material with ease.  All was well, we were chatting (ok, I was hollering, because her hearing has grown steadily worse this summer) and we were having a good time.  Eventually our buckets were full, so I headed to the trailer to dump them.

Danger: Quarry with steep walls

When I came back to the Quarry, my heart was in my mouth; Mom had left her seated perch and decided to leave the Quarry, but instead of using the staircase, she was climbing the steepest stone wall in the garden. I froze, I didn't know what to do, if I said anything, it would make her turn her attention to me and she very probably would fall, so I said nothing, just remained rooted to the spot, holding my breath.  Carl was there, too, and I alerted him to the situation; we were both on the other side of the pond, so there was no hope of getting there to catch her if she fell.  After what seemed an eternity, she made it to the top, safe and sound.  I would never attempt to climb out of the garden the way she did.  How hard her Guardian Angels must be working!

Relief and the resulting adrenaline rush nearly tipped me over; I went and gave her a fresh bucket to put weeds and frozen plant material in and gently turned her attention to the flat part of the garden, well away from the perils of high stone walls and water.  It would do no good to scold her for her mountaineering ways; it was a blessing she'd come out unscathed.  What would possess her to bypass the staircase for the sheer wall is beyond me.

The daily chore of forcing Mom to take her pills was wearing me out in November, so Carl cheerfully agreed to take it over for me.  Mom likes Carl very much, and since he's a man (and not her child) he can get away with telling her what she needs to do much more easily.  So every day after work, Carl goes up with me to give Mom her pills.  I usually walk up with him and then continue walking to and fro on the road while they visit. Carl watches TV with her for an hour or so and then we say goodnight and go home. 

All was well for a few weeks, but then I started to notice weird things again.  We picked her up for church and she announced she'd lost her wallet.

"I had it last night, but now I can't find it," she said, worriedly, as we drove to town.  "I think I hid it somewhere."

"Well, don't worry about it," Carl said, "We'll find it when we get back."

"I hope so, because all of my money and my cards and checkbook are in that wallet," she said.

I worried about it for her all through church, I can't really tell you what the sermon was about.

We got back to her house and the search began.  We went through drawers and cupboards, she told me she might have put in a roasting pan, or maybe it's in the bread box, or did you check under the mattress?  Maybe it was in the garage, or maybe she left it in the mailbox, or is it possible she took it upstairs?  Maybe we should look in the machine shed, it could be in the wood pile, or maybe it's in her car?  Wait, maybe it's in our car, or maybe it's here or there, well, gosh, I don't know WHERE it is, do you?  Are you sure it's not in your car?  She had it when she took a bath last night, now she just doesn't know what could have possibly happened to it, are you SURE it's not in your car?

Carl was calm as a cucumber, he doesn't get rattled, but I was starting to think she had hid it so well that we'd never find it, I was mentally chewing myself out for not commandeering all of her insurance cards, check book, bank account numbers long ago.  We'd had a string of burglaries in our area, in fact, even our next door neighbor had been burgled, so the thought remained that maybe we were looking for a wallet that wasn't hidden, but had in fact, been stolen.  So that opened up a whole new can of worms, should I start calling banks to put stop payments on accounts?  I am power of attorney for her, so that's not a problem, but I certainly had let her keep her important information far too long.

She asked me one more time, "Maybe it's in your car," and I lost my temper.

"No, it is NOT in my car.  You said you hid it so we have to find it, I don't think you understand how serious this is!"

And then Carl chastised me for getting angry with her which I was immediately ashamed of anyway; I don't mean to lose patience.  I'd just gone to communion an hour earlier and prayed for forgiveness and strength to remain calm and patient and look what good that did me?  One hour out from church and I'm already needing more forgiveness.

We decided to go home and eat some breakfast and I made a call to the bank to ask what to do in case her wallet had been stolen.  As it happens, not much can be done, and I was really rattled then; I was picturing making dozens of phone calls to financial institutions. We went back and resumed the search.  We started over from the beginning again, each of us taking a different area this time.  I finally found the Wayward Wallet stuffed in her linen closet with the towels.  Carl is colorblind and didn't realize her wallet, being brown, is a color he cannot see, plus the way it was situated made it almost invisible.  What a relief to have that wallet back in my hands.  Though I know it hurt her feelings somewhat, I took all of her pertinent information home with me.  I don't want to go through this little game of  Hide and Seek again.

I told Carl I thought her medication might need adjustments, and he agreed.  Just prior to the great wallet caper, I'd had her in to the doctor for stomach pain and she told him 'to his face' (she always says she's going to give him a piece of her mind---please don't Mom, you need all the pieces you have) that the pills make her sick.  The doctor sent her for xrays, urinalysis, blood work, stool samples, and everything came back fine, in fact, if my own blood work looked as good as hers, I'd be thrilled.  There is apparently no reason for the stomach ache, but every other day she is in pain.

And 'that yellow pill' is to blame.  I don't know why she calls it a yellow pill, it's a dark orange, but I know she means the nifedipine.  Still, Carl was giving her the meds and she was complying, or so he thought, until this past Sunday when he caught her palming them.

He called her on it, "Did you swallow your pills?"

"No, and I'm not going to.  They make me sick."

Carl has never encountered her stubbornness before, so he was stymied.  He said he told her she had to take them because otherwise her blood pressure goes too high.

"You can stand there and stare at me all day, but I'm not going to take them.  They make my stomach hurt!"

Not to be outdone, Carl got the blood pressure cuff and found her pressure to be 200/95.  He told her she can't go on like this, she must take her pills.  She finally did give in, but she wasn't happy about it.

"You think I've been taking them all along and I haven't," she said, "I just hold them in my hand and take a swig of water and you don't know any better.  And now you made me take them and I'm going to be sick again."

Carl talked to her for awhile and she seemed fine, so he came home.  We went for a drive to Appleton and took a long walk along the Fox River on a new trail we'd never hiked before.  The trail ended up near a very large graveyard, probably close to sixty acres, where many of my forebears are buried.  We were both in pensive moods because dealing with Mom and my not so great health takes a toll over time. Being in a graveyard on a foggy Sunday afternoon matched our emotions quite well.  We carefully walked the graveyard, looking at birth and death dates and the sobering realization that no one makes it out alive.

Up until now, Mom is still exceptionally mobile; she can out-walk many people twenty years her junior.  And she's still very interested in her art; she's in the midst of painting a heart-shaped concrete stepping stone for us that Carl's father made from a leftover cement project.   The stone is in the shape of a heart with our names and wedding date scratched into the surface while the concrete was wet.  Mom is painting flowers and butterflies to liven things up.  She was painting up a storm this weekend; when she's feeling good there's no stopping her.  But for the last three days, the stone sits, untouched.

Yesterday (Monday) I called Mom.

"I was up all night long, sick to my stomach.  Do you know how long the night is when you're in pain?  My stomach hurts so much because you make me take those pills. Why do you make me do it??"

I called the doctor's office and told them the situation; they suggested I try hiding her pills in applesauce or yogurt.  I said if I did and she found out what I was doing, she would simply refuse to eat and then we'd really have problems.  (Besides, she hates applesauce and yogurt.) They said she needs to continue taking the meds, so I requested another appointment, maybe if she heard it from the doctor's mouth, she'd be satisfied.

Off to the doctor we went.   Mom was unsteady on her feet because she hadn't eaten anything since the night before, and I was more than a little alarmed by her physical state.  (Remember, this is the woman who was climbing rocks in the Quarry a few short weeks ago.)  The nurse took her vitals and we waited for the doctor to arrive.  I could tell Mom was in pain, she was sitting bolt upright and she would wince every now and then.

The doctor came in and asked the usual questions and Mom answered him, but would always look past him to me to give the final approval on everything she said.  She couldn't remember when the pains started, thought it was on Sunday night; I gently reminded her that she'd been complaining of stomach pain for at least six months and then reminded the doctor of all the testing he had ordered in September.  He logged in to the medical records and recalled the tests and the fact that they didn't find anything wrong at that time.  So here we were, back to square one again.

The doctor told me he would not want to live to be 95.  I don't know what that meant, really...is she supposed to be sorry she did?  "If it were you," he said, meaning me, "I would be more aggressive in seeking the cause of your pain, but at her age you have to balance any possible treatments with quality of life.  Exploratory surgery is very hard on a person, and would she survive it?  If we found something, would we treat it?  These are all questions you have to ask yourself."

More worries, more decisions, but I cannot let Mom suffer without looking into it.  She did voice her opinions again on the Nifedipine causing her stomach woes, and for his part, the doctor seemed to seriously consider her theory.  I asked if there were more tests we could run, he sighed and suggested the CAT scan.  So tomorrow morning Mom and I will be heading to the hospital.  Hopefully the blood tests will be back by then, too.  I don't know if they will find anything wrong and even if they do, I have no idea what our options will be.  We're just going to take this step and see where it leads.

Carl and I visited with her tonight until 6:30 pm, she grudgingly took her blood pressure meds and we sat around watching 'Jeopardy'.  She wasn't hungry, I couldn't entice her with any mention of food.  I asked her if she wanted me to spend the night but she adamantly refused, she's fine, what am I going to do anyway, watch her try to sleep?

After supper dishes were done I called her tonight and wheedled her into eating a little cereal so she won't go into the test tomorrow on a 36 hour fasting status.  I  hope she can get some sleep tonight and that tomorrow goes well, too.

I know the day will come when we will have to part.  I know every day could be our last; I know how absolutely fortunate I have been to have had my mother in my life for 57 years.  I wish I could have done more for her, I wish I still could.  We were more like friends than mother and daughter; we both survived very hard years on this farm and I wouldn't have made it through without her sense of humor and indomitable spirit.  Though she only told me once, I know she loves me.  Her generation didn't use the 'L' word, you were supposed to know you were loved, they don't have to cheapen the word by using it too often.

She has been the very best mother a daughter could ever hope to have.

One of her latest paintings
As she was always there for me, I have to be there for her now.  She deserves far more than I could ever give.

I pray for the strength to do my best to help her and ease her suffering.  She tells me not to worry.  Tonight she said she was sorry she gave me a hard time.

"You're not giving me a hard time, Mom.  I just want to help you and I don't know what to do.  We'll see how things go tomorrow."

"Do you think they will be able to tell me what is wrong tomorrow?"

I kissed her forehead and said, "I sure hope so."

Though the game of hide and seek earlier this month taxed my patience no end, I know that I would gladly do it all over again if she only felt well.  She's never given me a hard time; she doesn't have a cruel bone in her tiny body, not even when the confusion comes and goes.

She's my Mom.

And I love her.

























7 comments:

FlowerLady Lorraine said...

Oh dearest Karen ~ My heart aches for you and your health and for your Mom and hers. I pray you both will get some relief soon.

Bless her heart, 95. Climbing a steep rock wall, painting, fooling you that she's taking her meds, hiding her wallet in a safe place.

Don't you feel guilty for losing it. I just read last night that God is there for us no matter how many times we mess up. We call on Him, He is right there with love and forgiveness. We learn and grow in this journey called life.

May God bless you with strength, peace and love and healing as you take care of your dear sweet Mom and Carl.

Love, hugs & prayers ~ Rainey a.k.a. FlowerLady

Anonymous said...

My daughter has the same thyroid disease she got tested and they have her not eating certain foods and she is slowly improving. She has had a very very hard time of it but the food that was eliminated has made a world of difference. I believe she went to a naturopath if I'm wrong I will let you know. Good luck with improving your health it really is all about finding the right doctors and being aware of your body and being your own advocate.

Anonymous said...

I have been reading your blog off and on for quite some time and enjoy it. I hate to hear about the Lyme Disease (and your mother of course) but would like to suggest that you read a blog called Fiddle Dee Dee. She has had quite an experience with it and may have some useful information. Please Google her. I hope it helps. Margie

Charade said...

We sound like twins from different states. At least I have a preventive specialist who stays on top of my T4/T3 numbers, endocrine and hormonal challenges, and works to boost my immune system to fight the "do I or don't I" (tests always equivocal) have Lyme disease. She is like a bio-chemist probing my body's cellular make-up, and I can't imagine having to deal with mainstream doctors anymore. I hope you train your doctor to do the same for you, or I'd happily refer my St. Louis doc to you.

As for your mom... my prayers go out for you both.

PlantPostings said...

Yikes, you've been through too much lately. Sorry. Lyme Disease--yuck. And then your mom's adventures. Gosh, I hope you find some normalcy in the weeks ahead. Hopefully, winter will give you a rest. Thoughts and prayers for you and your mom!

Karen said...

My thanks to everyone, I really appreciate all the support and prayers! Yes, I am now seeing an integrative LLMD (Lyme Literate) and have greatly changed my diet, too. Conventional medicine docs either have their hands tied by their governing boards or insurance companies and it is a true travesty. I will definitely check out the blog and please do keep me posted on any new developments. Again, my heartfelt thanks.

Indie said...

Oh no! Such a trying health problem and now Lymes! That can be truly awful! It is now such an epidemic, but really needs more research done on it. And that must be so hard with your mom's health difficulties too. My thoughts and prayers are with both of you!