One Less Thing

I had a great report from the kidney doctor yesterday.  My creatinine went from 1.42 to 1.19; my GFR went from 41 to 56, which bumped me up from stage 3 to stage 2. He said the kidney disease was NOT progressive, and as long as I stay away from Alleve, Ibuprofen, and contrast dyes no further damage should occur outside of the normal aging process, because I have no active risk factors. 

I am estactic. Beyond relieved. One less thing to worry about and deal with. Now, just back to my normal crap with the mental illnesses and migraines. 

The migraines, ugh! , have increased this month, I guess due to the decreased propranolol. I am still having dizzy spells even though my blood pressure went up ten points since being on the lower dose of 80mg. BP was 110/80 yesterday instead of 100/70.

I drank a Mountain Dew with my Imitrex this week and had minimal side effects from the medicine. It was incredible!  I’m hoping it wasn’t a fluke.  I know caffeine helps because I’ve tried coffee before, but this was amazing. 

My daughter is struggling again. Anger, irritability, decreased motivation, not wanting to go to school. She refuses to use the light box even though I think it helped before. She thinks it is stupid and doesn’t do anything. She’s being a closed-minded teenager.

I think if we can just get through the rest of the cold, dreary winter days she will be better. In the meantime, it may be rough around here.

She sees the new psychiatrist in a few weeks, who we just told this month that she was doing so well. How quickly things can change!  She’s been acting like this for going on 2 weeks now, so I don’t think it’s like a PMS thing or anything.

I was thinking about how my anxiety has been better lately. I think. I mean I worry about stuff and I have panic attacks here and there, but I don’t feel like I am suffering all of the time because of it.

Everytime I start to get anxious it is usually about our busy schedule and how many things I have to do outside of the house in the week ahead. When that happens, I try to put it out of my mind and just think about today only.  This helps a lot. 

It helps to write all of this out, too. I’m just in a really good place because of my doctor’s visit yesterday. Hoping it lasts. 

The Devil’s Artwork

I never expected to be chronically ill this early in life. I still have school age children, active in sports and many other things.

I have a vibrant marriage, filled love and friendship like no other. I want or need for nothing. Except good health. 

I’m in physical pain almost daily. The days I feel well are refreshing and freeing. They jump out at me and grab my attention like a fierce hug from a long lost friend, because they are so few and far between. 

I remind myself that I am not the only one in this world with pain, in pain. I’m in far less than many. More than others.

Comparing is a fool’s game, however.  I must give myself the dignity to validate my own experience regardless of its relevance to anyone else’s. I have to allow myself this selfishness. This self – love.  

Sometimes it turns into self pity and anger, and I want to pound my fist into the ground until my knuckles are dust mixed with blood and bone.

Or I want to slice my throat just to get the long, drawn out, inevitable process the fuck over with already!

But, I don’t, and I won’t.  It’s not for me to do to my family. To my children. To their minds.

I go to each doctor’s appointment, and I take their advice.  I do what I am told and I stay the same or get worse and then maybe better, and then back again. A pendulum that always comes to rest back at center.

Chronic illness is the devil’s artwork tattooed on my cells. My organs scream for the touch of God. Will I ever see His face?

Aftermath

The tournament weekend went really well for me.  I stayed in the room Friday night and rested. Socialized Saturday and Sunday.  Handled the convention center crowds like a normal person without the need for a Ativan all weekend until the last morning when we had to pack up and check out before the last day of play. Irritability and agitation set in out of the blue and came on so fast. Luckily the med works quickly to calm my system down. 

Not surprisingly, I had a severe migraine the day after we got back (yesterday).  Today I still feel worn down and depressed. Little things, like showering, unloading the dishwasher, and sweeping the floor, feel like big things. 

This is my third migraine so far this month. I had two in November and three in December. Better than six or eight like I was averaging for the last year. I hope I am done for the month so I can report 2-3 to my doctor and see where he thinks we can go from here; if he even thinks zero is a realistic goal. 

Med Change

Six days ago my propranolol was decreased from 120mg to 80mg because I was experiencing dizziness a couple times a week in the evenings. The dizziness just started within the last month even though I’ve been on the increased dose of propranolol for 3 months now. Don’t know if it can start anytime or if it has anything to do with the progression of my CKD (chronic kidney disease) since Nephrologist asked me if I was dizzy at our visit.

Daughter sees her new psychiatrist today. I’m so nervous about it, hoping we like him; worried about my husband throwing a fit when they tried to cancel our appointment last week; worried about asking the doctor for a note for the dermatologist saying my daughter can take accutane. I’m having a lot of anxiety.

Spent all day Saturday with my husband buying a new car. Went to 4 dealerships, driving about 100 miles between them all. We were gone for 10 hours. I was so overwhelmed by the end that I cried on the way home. I needed to take a second Ativan, but I didn’t because I have to save them for volleyball tournaments this month and other things.

I have to ask my psychiatrist for more Ativan each month, but I’m afraid she’ll say no.  I have six days this week when I need to take one, but I only get seven a month, which means I’ll have to suffer through some days and only take one for the most severe anxiety producing events.

We are going out of town this weekend for a tournament. I’m looking forward to it because I love watching her play and it’s exciting to take trips, but packing stresses me out as does getting the house cleaned and ready for mom to stay here with my other daughter.  I worry about getting migraines because of lack of good sleep and down time when we stay out of town, too.

It’s terrible not to be able to enjoy these things totally, due to my illnesses; to always be worried about the effect they are going to have on me, mentally and physically.

Am I going to have a panic attack?  Am I going to get a migraine?  How bad is my anxiety and fatigue going to be?  How many days will it take me to recouperate once we get back?

Past experience tells me things will be rough, but it doesn’t keep me from going. I don’t know if I’m a glutton for punishment, in constant denial, or just refuse to let my symptoms completely dictate my life, especially when it comes to my children. 

Panic Attacks Coming Back

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I hadn’t had one in a really long time.  Maybe a year or years, until she went to Florida with a friend six months ago and I started imagining her getting hurt and not being able to get to her for a several hour plane ride.  It was bad.  The racing heart, the shaking, the crying, the choking feeling, the hyperventilating, feeling like I couldn’t breathe, losing control of myself.  Mostly the breathing – suffocating really.

Then last month, I show up in church, expecting it to be nearly empty.  It was not.  Standing room only.  I stayed with my head down almost the entire time because the sea of bodies in front of me was too much to bear.

Claustrophobia set in, heart racing, rapid breathing, overwhelming urge to cry, depersonalization (I felt like I was out of my body watching everything from above the crowd,) shaking,  twitching.  I tried to stayed grounded by holding the book and following along with the readings and prayers.  I made it through with friends on either side of me and behind me.

And now another one last week, after arriving in a crowded neighborhood filled with mom and pop restaurants, delis, and bakeries, expecting it to not be crowded.  We had to park blocks away from our destination.  The sun was in my eyes the entire walk and I forgot my sunglasses, and the temperature was cold.  I felt the first twinges of agitation.

The people we met decided they wanted lunch before we went to the bakery.  This was not the original plan.  We walked several blocks looking for a place to have lunch that wasn’t overbooked and couldn’t find any place, so we gave up and went back to the bakery.

The bakery was small and packed, and we had to wait for our number to be called.  I stood in a corner by the door and tried to stay out of everyone’s way, silently begging people to stop talking to me.  Responding required too much concentration and my irritability level was now through the roof.

I was began to have shortness of breath, dizziness, feelings like things weren’t real, like I was in a dream.  By the time we got in the car and drove away, I was fighting the urge to break out in tears.  I felt like I was going crazy and going to lose control of myself, flail myself out of the car while it was moving or start speaking in jibberish language or something.  I took an Ativan and my panic attack subsided about ten minutes later.

I usually take an Ativan in anticipation of crowded or stress producing/irritation producing events and then do ok.  I didn’t in these cases because I wasn’t expecting them to be that way, which made them even more stressful because of the surprise factor to it, I suppose.  Something to tell my doctor next time.