Learning to Live with a Label- Chronic Illness

In November of 2010 after 16 years of marriage I became a divorced mother.  Regardless of the relief I encountered, divorce is a grieving process rarely handled correctly, especially when three kids need your focus.  Just like many others, I don’t think I acknowledged the stress it caused but kept “pulling up my boot straps” and smiling.

I lost my home, my credit, my church, and many “friends” over that year.  I even battled with my closest family members at times.  The emotions were excruciating.

I worked my Mary Kay business feverishly, picked head lice for a company called Lice Doctors on the evenings that the kids were with their dad, and during the early morning hours, I worked a part time job merchandising for a grocery retailer.  I was determined to remain the one who picked up kids up from school and got them ready for school.  I made it work.

In the summer of 2011, I registered myself for nursing school with the excitement of making more money doing what I love and was always too scared to go for.  Over the next few months, my role as a mother turned into a full time caregiver when my son experienced the worst 8 months of his life.

My 14 year old, beginning in June of 2011, turned into a full time mental case nearly overnight.  He couldn’t sleep, couldn’t eat, and literally could not bear to leave my side.  He literally had a nervous breakdown that was unexplainable and very difficult to find help for months.

During his battle with his mental status, he took a fall and broke his leg and needed surgery.  This was the week he should have started his freshman year.  After his surgery, his liver failed and while learning to get around on crutches, he lost 40 pounds in two months, violently ill, to say the least.

Needless to say, I lost my two side jobs and desperately tried to keep my selling of cosmetics to a point that would feed us.  At that point, I also lost my health insurance.  Of course, I didn’t make it to nursing classes that fall, either.

The stress was mind numbing.  My prayers were sincerely intense as a begged for his wholeness again.

In January of 2012, we found a doctor that helped regulate some psychiatric drugs and we began to see our son again in some sort of normalcy. Life began to get back on track and we began to get him caught up with high school students again.  By the last 6 weeks of that school year, he was able to attend school and get all of his credits for 9th grade.  It was a massive undertaking and I don’t regret one penny lost or material thing sold that had to be done to be by his side that year.

Right before his illness kicked in, I had met Richey.  Through that time, he stood by my side and I was often uncertain if I should drag this new love into our situations and adversity.  We turned our dating into marriage in Oct. of 2012.  He moved us all to a large rent house on Nov. 10, 2012.  In sheer bliss, anticipation of better days, and some healthy degree of caution, we began our blending of two torn up families.  We prayed and still pray God’s forgiveness, grace, and blessing on our new Jallston (Johnston and Gall kid) family.

The weekend we moved into that house in Garland, I experienced a wave of illness and exhaustion that I thought must surely be what happens to people who move often and experience such stress and excitement in such a short period of time.  I went to the doctor that week thinking he would find a mere infection or virus and he simply wanted to hand me a large dose of an anti-anxiety pill.  I denied his offer and continued to run fever for nearly a month before finding a new doctor.  With having no insurance, every visit was a hit to our new large family budget along with the built in “mommy guilt” of spending money on myself.

 In December 2012, that new doctor called and said I had mono and should feel better soon (seeing as though it appeared I had already had it a month).  “Soon” rings in my head to this day as I type this with all sorts of body aches and pains a year later.

Little did I know at the time, that this “virus” would be my life for the coming year and beyond.

I began to cancel activities, Mary Kay parties and meetings, not attend school and friend events, in effort to “rest” and recover.

Thanksgiving and Christmas of 2012 were mind numbingly stressful as my fatigue turned into a mental battle of trying to enjoy my new life and make new traditions for our new family.

As I look back over 2013, I literally am learning to mourn the loss of my health.  I ran fever, around 100, every single day until April.  In April and the first part of May, I had two “good weeks”.  I thought it was over.

 Then the body aches started and fatigue continued.

These good days and bad days are now daily terms in our lives.

I cannot even count the nights that my dear husband has literally held me until I fell asleep, both of us in tears and feeling hopeless or helpless or both.

We spend countless days thinking, “next week should be better”, “I will feel better tomorrow and get those things done that have been pushed aside”.

I have seen anywhere from 8-18 doctors, specialist and ER doctors over the last year with the only answer being that I “had” mono at some point.

We are finding that after such inflammation, fever, and my body being so virus ridden for an extended period of time, the long term effects are less than fun and permanently damaging to the body.

My liver has become angry, my digestive track runs my days, and my body is riddled with pain in different places on different days.  My anxiety levels are annoyingly high and my memory and brain power suffer greatly.  My digestive tract simply put, doesn’t work correctly.  My kidneys and bladder stay irritated.

The focus of two of my main doctors now is somewhere between chronic fatigue syndrome and fibromyalgia, which are both so similar and both with no real test for diagnosis, frankly it doesn’t matter to me which they call it.  I call it exhausting and a thief that has stolen my life.

I truly feel like someone has stolen my identity while I muffle around trying to rediscover who I can be with little to no energy to survive on.

I owe the first doctor so much money, she won’t see me any longer.  She was my favorite and my heart wishes I could talk to her every day.   My current doctor (since insurance kicked in with Richey’s new school calendar year) seems speechless every time I go in and sends me to another specialist.

This month I have an appointment with his latest suggestion, rheumatology.  Every time he makes a new suggestion and I count down the days to my “new” doctor appointment, I can’t help but get excited that maybe this one will know more or at least spend more time trying to help. 

 

As I wrap up another year and watch people on FB and TV reflect on their years, it is very difficult to find the positive in 2013.

As always, I thank my heavenly father for my 3 and Richey’s 2, beautiful, healthy, energetic children.

But my heart aches knowing I will spend another year or all of my years ahead, trying to find enough energy to let our kids be kids and not have to “care take” their mother at such young ages.

My body has sincerely hurt in sadness as I reflect the things I missed this year.

I missed Mark’s funeral and getting to hold his precious wife, Laney and their kids while they said goodbye to their daddy and husband.

I missed Terry’s father’s funeral and helping their family work through their loss.

This is the first year since I had children in school that I haven’t been on a field trip, room parent, no parties, and hardly even their choir or PTA performances.

I’ve missed meetings for Tyler about college info and SAT info.

My mother was in and out of the hospital several times that I missed with internal bleeding.

My dad had a heart attack at the end of 2012 and all I could do is try to comfort Mom on the phone.

My mother was in ICU, bleeding internally (for about the 4th time) on Oct. 1 while I was in the hospital having test run on my tummy.

We had to make a quick decision to leave a the Garland rent house in August and I “helped” pack, but had to watch my husband and kids nearly kill themselves moving into our treasured new rent house in Rowlett, with (NOW fleeting) hopes that maybe something in the house in Garland was making me ill.

In the midst of moving us in two days, virtually alone, I truly think Richey hurt himself, which manifested in massive pain in his neck, literally on Oct. 1.  He was in the ER while I was in the colon test at the hospital.  All the while, know Mom had gone to the ER in Beaumont and that bleeding internally THAT many times meant she didn’t have much time left with us.

Mom died on the 16th of Oct.  Someone flew me down to Beaumont the week before to spend time with her and my sister who was already there.  Those days were so long and emotional; there is only a blur in my head of how it all went down.

What I do know is that my body hurt so bad I could hardly see straight to drive or walk.

I was late to my mother’s funeral after falling asleep on her bed dressed for it completely just hours before.  My body was in full rejection mode.

When we returned to Dallas, we scheduled Richey’s neck surgery and once again the next few weeks of being a caretaker would become a blur.

Some of the “blurs” that I refer to are from what they call, “fibro fog” where the cognitive responses literally are just slowing down with the pain increases and some of the blur is a direct result of the amount of pain medicines, anti-depressants, anti-anxiety drugs, all used for pain management; not to mention the sleeping aids that help to ad comic relief to our days.

Since we rang in last year, to now 2014, I have gained 54 pounds.  My stomach bloats so much in the course of the day that I have to undress and put on stretch shorts or pajamas by about 5 or 6.  The stomach pain and bloating is beyond miserable if we have an evening activity and I stay “dressed” which leads to no sleep that night.

Basically, any time we have an activity later in the day, I can’t get to sleep because the body aches and pains keep me awake and anxious.

The amount of pain killers that I rotate through have caused my liver enzymes to go through the roof, but so far, no liver failure.

I have had a difficult time adjusting to carrying the extra weight, beside the obvious not having any money outside of doctors and losing income to have clothes that even fit.  It makes the pain worse and obviously adds diabetic and other risks.   I get winded from simple bathing and dressing.  When I fix my hair and make-up after a shower, my heart rate can easily hit 200.  The cardiologist assures us that my heart is still beating and handling the extra beats, but cannot tell me why it’s happening.  They made me get off the treadmill before I had even done 3 minutes …yes three… during the echo stress test. 

Physical activity of any kind brings on pain to tears and a heart rate that gets me special invites to the first open room in any ER every time.  I have never had to wait in an ER.  The minute they take my pulse, even resting is over 100, I get immediate attention.

Sometimes I look back and laugh at how similar this whole experience is to when my mother was seeking medical attention and finding no results.  It was literally years before any doctor started correctly diagnosing some of her issues.  It’s very surreal to hear doctors say the same things to me now that she heard, like maybe it’s just stress. We both knew better.  Her quality of life steadily decreased and now she is in heaven already at the young age of 67.  I would be lying if I told you I am not happy for her.  When life feels so “missed” out on, heaven feels like a sufficient and wonderful answer to pray.  I miss her.  I want her, but it wouldn’t even have been fair to ask her to stay one more day in that miserable body she was given.

There are people who have said to me, innocently, “At least you don’t have cancer” and “You should just be happy to be alive”, or “You are probably allergic to gluten”.   My favorite comment by far was, “I couldn’t lay around all day like that.  I would have to do something”.  OUCH.  To think that someone thinks I’m taking this without any fight in me, is so ridiculous.  Oh one more fav, someone blurted that she doesn’t have the “luxury” of being at home that I do.

This is not a luxury.  This is not because I’m a stay at home mom (which I would proudly do at any time).  This is me surviving and trying not to “off” myself from the pain and mental battle that comes with losing the life I had built to this point the last 40 years.

This includes my teaching career which would be impossible at this level of pain or medication, and my MK career barely holding on my washcloth thread.

I want to assure you that I have looked into, tried and completely gone bankrupt this year trying to figure out and resolve this health issue.

So as I review this last year, I plee for your prayers.  I commit to doing everything in my power to survive this with a smile and the best attitude possible for my children and husband.

I beg for your forgiveness if I have not returned your calls, texts or emails in a timely manner or at all this past year.

I beg your forgiveness if I have messed up or gotten your MK order wrong! J

I beg your face to use our skin care which helps pay our bills.

I beg you to have mercy and grace on my children if they act out or seem “unparented” at times 😉

I beg, not for your sympathy, but for your awareness that other people may be going through an unknown affliction that needs a smile or a hug, not advice or criticism.

I pray blessings on my sweet family as they continue to be so wonderful and understanding to me.

I pray for a very merry 40th birthday celebration in January that does not focus on my new labeled disability.

I pray that God can use me through this new testimony and disability to bless others who may be finding life difficult at times.

I can remember my mom apologizing repeatedly that I had to take care of her and I hushed her up every time.  Now I seem to do the same apology to my babies and thankfully, they seem blissfully unaware of my guilt.

Jesus, kiss my mom on the forehead for me.  She likes that.

Bless my friends in 2014 and thank you for holding my family together for me.  I am blessed even when I don’t show it or feel it.  I do know it.

As Dad says, “One foot in front of the other”.  Let’s do this, 2014.

 

 

 

 

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3 thoughts on “Learning to Live with a Label- Chronic Illness

  1. Oh, Daina, I did not realize all the problems that you have been going through. If you ever need anything just let me know. I will be praying for you in the mean time. I hope you have a wonderful birthday and a spectacular 2014.

  2. it sounds possible your son and yourself are dealing with lyme disease. For his neurological issues to be present in a otherwise normal child and you acquiring mono will lower your immune to fight the lyme. Lyme is present in many healthy people but our immune fights it. I am reading your symptoms and its very possible. I was lucky enough to find out I had it because someone mentioned it to me and i finally realized i did after looking into other illnesses for four years so i always look to help others who are possibly dealing with this. i am getting treatment and better. Another woman I know has to pull her daughter from college because like your son she just had a nervous breakdown out of nowhere and they were also dealing with lyme. Oh and most important thing to know is standard testing wont find it. Doctors will test you and you will most likely be negative. Test is igenex and only the good lyme literate doctors can help you. Big controversy and the medical system is divided on this. Can send you some links to educate yourself if you think its possible you have it. The test is igenex labs in CA.
    Good luck wanted to you!!

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