A Relapse?

When I finished writing my book; my story did not end there, my struggle with depression and anxiety continued. I still continue to blog my journey at www.harrislisa72.com. I write as therapy for myself, a means of helping others who struggle and also a way of challenging those who may not understand this illness. This blog will take us down the road of the last few months of my painful and frightening journey.

A relapse? Oh no, that cannot happen and will not happen, I won’t let it happen. Weeks have gone by and I’ve really struggled; I mean REALLY struggled. To make a traumatic experience even more traumatic; I now experience something I feared for years now, that would be panic attacks. They are so frightening, making you feel you are losing ‘it’, you are losing control, your body temperature rises, you break out in body sweats, you panic; really panic…. you cannot breathe. You want to run! But run where?  I have learned so much over the years about panic attacks, that I thought I had them under control but I was wrong. Here I was in a full blown panic attack, how could this be happening? After all, didn’t my medication have this horrific symptom of depression and anxiety under control? Now I was really afraid, afraid of returning to an hell I knew I would never survive again.

Life was tough as it were, every day a struggle, every day a challenge. Nothing came easy and I was fighting for my life as it were. I certainly didn’t need anything else to make it even harder. My mornings became my nightmares, I dreaded for my eyes to open, given my present state I didn’t know how I was going to make it through another day. But I knew I had to, there were people depending on me, especially my two children; who became my will to live. Consumed by my depression, anxiety and now once again my panic attacks. I have to survive, somehow.

My nights have become my reprieve, it seemed a cloud would lift once evening came and darkness settled in.  I felt if I made it past daylight then I had survived another day. I longed for bedtime, for I knew sleep would help me escape this never ending battlefield of my mind.

So how do I survive? I have to believe I will get well; I done this before and I will do it again. Please God! You have to talk to someone, don’t suffer in silence, so I tell Lisa (my wife) what’s going on. Then it’s back to my psychiatrist who increased my effexor from 300mg to 375mg and just hope that this increase is going to work, now it’s a waiting game. But while I wait it doesn’t end there, I visit my family doctor who orders bloodwork to make sure there’s nothing physically wrong that can cause these symptoms. Next its finding a good therapist, which I did, and now starts the cognitive behavioral therapy once again. Has scary as all this is for me I know I have to keep moving forward, being gentle on myself and taking baby steps. To help my progress I also go for a 30minute walk, I do a lot of self talk, self affirmation and just believe I’m going to be okay.

This journey has been anything but easy. I have to believe there is a higher power that is going to walk this journey with me because there is nothing that feels any worse then feeling you are alone. With my family support, medical support and spiritual support; I WILL SURVIVE!

 

A Little Nudge

Months, weeks, days have passed, like a feather in the wind; here one second, gone the next. It’s like I went in hiding and I guess in one way I did. I loss interest and motivation in everything, anything I did was forced. Mental illness raised it’s ugly head and held me in it’s grip and wouldn’t let me go.

I had a therapy plan, a plan that I created to help me through the days of depression and anxiety. It certainly wasn’t a cure but for the most part it worked or helped at least. With depression and anxiety, you don’t pick and choose what day or days you are not going to be well; it just happens! Some days are fairly good while others could be torturous. And then there are those times when you just shut down, as it were.

I painted for sanity sake but what brought me peace turned into turmoil. I couldn’t hold my brush and still can’t but I know I will again, when the time is right. But right now painting is just too overwhelming. Ironic isn’t it, what once brought me peace and enjoyment; now scares me to death. This is what I call; mental illness!

Another part of my homemade therapy plan was, I played two fictional characters; live on Facebook. I loved it, it was fun, I enjoyed making others laugh. And I believe it took all our minds off the dreaded pandemic of the corona virus, that had shut down our world. But then, just like a light went out, I couldn’t do it anymore. No matter how much I wanted to perform; I couldn’t. Depression destroys who you are and you have very little control over it. I fought everyday and still fighting to keep going. With this illness there is no rest for the weary; you are in a constant battle to have some form of normalcy. But some days I just don’t win; I trust.

And lastly, my therapy plan included writing my blog (www.harrislisa72.com). Today is the first time I’ve held my pen for weeks or maybe months. I had so much to say, so much hurt to release, so much discouragement to share but I could not! The pain I felt could not be written. But today I feel it’s time to write. There are so many that are hurting, in pain and feel alone. I just want to encourage you that you can get through whatever it is you are experiencing today.  Our pain and tribulations may be great but ‘God is Greater!’

Over the years of struggling with this illness, I’ve had many reasons to give up, to give in and just call it quits. But I have not, with God’s help. I’m reminded many days of Job’s wife in Job 2:9 when she said to Job after he had endured many afflictions, losses, tribulations. She said, ‘…curse God, and die.’ But Job’s reply was, no matter what he had to endure; he said, ‘Though He slay me, yet will I trust in Him.’ So no matter what we are experiencing, no matter how long we’ve been afflicted; we still have to trust in Him. He will bring us through.

I believe that God could have healed me a thousand times over but He didn’t choose to. He has another plan, something I cannot see, but that’s what having trust is; placing my life in His hands, knowing that He is in control. Because God as allowed me to go on in my illness for years, I have reason to be angry, to feel abandoned, forsaken and to question God. But I know that I cannot feel this way, it would serve no purpose and destroy the faith that I do have.  So no matter what happens I will still trust in Him and I will endure onto the end.

Then to add fuel to the fire the worldwide pandemic, the corona virus or covid-19, invaded the world. Now I knew I was in real trouble, anyone suffering from mental illness, any major change could bring on a relapse or intensify, your already existing symptoms. Then came the guidelines by the NL Government to contain and stop the spread of this deadly virus. Some of these guidelines were the complete opposite of what I needed to help keep my mental health under control. The guidelines that bothered me the most was, ‘stay home’ limiting contact with others to my immediate household bubble. I know all of the guidelines were for my good but for me it brought on panic, fear  and isolation. And then there was social distancing, I love touch, hugging and here I was being told to keep my distance of six feet. This was rough and is still rough today because this nightmare is not over, no matter how much we think it is.

I pray my blogs are, an encouragement and a little nudge to go on. I know there are so many days that going on is the last thing we feel like doing. No matter what your pain is, no matter what you are going through; you got this! As tough as it is, you can do it!

 

Lauren’s Blog

Hi, my name is Lauren Kennedy Tucker and I have spastic quadriplegia cerebral palsy. I am five years old, ‘I’m not a baby anymore; I’m a little girl now.’ I really want to walk and ‘do it myself’ but when I was born the part of my brain that tells my muscles what to do was damaged. So when I want my legs to move, they don’t listen. And because of that my whole life is one challenge after another. Daddy is going to share with you some of those challenges and help you to make a little sense of why that makes my life a little more difficult. Because for me every aspect of my life is affected and I have to endure more pain, hurt, mobility issues, accessibility problems, inclusion, therapy, etc. then the average child will endure in a lifetime.

Don’t get me wrong, I still live a happy, loving and fulfilled life, in spite of my challenges. This is ‘my’ normal, it’s just that everyone else as to be enlightened, educated and introduced to my way of life. It’s not that I am different, it’s just that I sometimes have to do things a little differently than others. Maybe you have to wear glasses to see, I use a wheelchair to move. Because you wear glasses doesn’t mean you are different and should be excluded; then neither should I because I am in a wheelchair (for now).

My Daddy is a great advocate for person’s with a disability, mobility issues, vision issues and anything that would make our world a better place to live. He certainly believes in equality for everyone, no matter what. So I’m really lucky to have him on my side. Being an advocate certainly won’t win him any popularity contest but if it’s going to improve my quality of life then Daddy doesn’t mind because he always says, ‘It’s the squeaky wheel that gets the grease’. Both Mommy and Daddy are my greatest fans, I am so lucky to have them in my corner. And of course ‘Bruddy’ (Logan); I just love him to pieces!

Below is a list of some of the events, therapy, and important people people that are involved in my life:

Cerebral Palsy Clinics at The Janeway every 6 months.                                                     Physio Therapy                                                                                                                                       Occupational Therapy                                                                                                                        Speech Language Pathology                                                                                                          CNIB Kim Hart, Vision Impairment                                                                                                Psychology                                                                                                                                                Inclusion Consulting                                                                                                                              Orthopedic Surgeon DR. Deane                                                                                                      Neurologist Dr. Buckley                                                                                                                       Developmental Pediatrician Dr. Doyle                                                                                         Pediatrician Dr. Aktar                                                                                                                           Ophthalmologist Dr. Bramwell

Wow. that makes me feel like I’m a very special person and well taken care of! Daddy , you forgot to mention that I frequently visit the Children’s Shriners Hospital in Montreal for assessments. I’ve been to Montreal four times already to be assessed for a Rhizothomy surgery which could release some of the spasticity in my muscles which would in turn help me to have a better chance of having some form of mobility. But up to this point I have not been a good candidate; but Mommy and Daddy are not giving up. We believe that eventually I will get this badly needed surgery. Dr. Farmer is going to keep his promise of doing his best to help me walk. But for now I have obstacles to contend with before I will even be considered for the rhizothomy surgery.

Because my disorder rendered me very spastic, in order to relieve some of the spasticity I  first began having botox injections through my groin. Botox is known to paralyze part of the muscle which in turn releases some of the spasticity. This is only a band aid remedy and would only last for short periods of time, only a few months at most. I had four procedures done while put to sleep but then the effects of the botox didn’t work anymore and the procedure was discontinued.

Right now, I have two dislocated hips and still waiting on surgery. If I were an adult with two dislocated hips; would I still be waiting on surgery? Daddy doesn’t understand the long wait, I was suppose to have the surgery done over a month ago but it got postponed and as of today we have no rescheduled appointment. I will have reconstructive osteotomy pelvic and hip surgeries done but at separate times. It would be too dangerous to do two of my hips at the same time. They will do one and then I will be in a hip spica cast (body cast). Then depending on how I am recovering; two or three weeks following I will have the second pelvic and hip surgery done and placed in a body cast for another 6-7 weeks, depending on the healing process. This is going to be very stressful and painful on us all but Mommy and Daddy are praying that God will be with us.

I am also diagnosed with epilepsy, my seizures seem to be under control somewhat since I’ve been on a new drug. Mommy and Daddy watch me day and night to make sure I’m not having a seizure. They are scared that having another seizure would do more damage to my brain; that would not be good.

There seems to be no end because in June I am scheduled to have strabismic surgery on one of my eyes. Dr. Bramwell is hoping that by correcting one eye will help correct the other. This is a visual defect in which one eye cannot focus with the other on an objective because of imbalance of the eye muscles. We are hoping this will help with my vision and the turn in my eyes. It seems nothing is for certain but we try to keep positive when things are so uncertain.

Once my hip surgeries are successful and healed, then there’s the surgery that Mommy and Daddy are so concerned about. It’s not guaranteed to work but it’s the only option we have right now of releasing some of the spasticity in my muscles especially around my hips because there still is a chance that if the muscles get too tight they can pull the hips out again and we have already been down that road and don’t want to go there again (I will have had 3 hip surgeries ). The next surgery would be to insert an intrathecal baclofen pump underneath the skin. Baclofen is a muscle relaxant medicine used to decrease spasticity. It will deliver the drug right to the spinal cord and release some of the spasticity.

It looks like a long road ahead but we will take it (try to) one day at a time. I know Mommy and Daddy are so exhausted and stressed; with the 24/7 care that I require, the constant trips to the Janeway, the worry about my surgeries, the expense of needed equipment (I am due for a new wheelchair and that’s like buying a used car) and lack of support, no available funding; all combine to make life a little overwhelmingand draining; both mentally. physically and financially. But God will make a way!

 

 

 

Hope In An Hopeless Situation

                                                         The days turn into months, the months into years and yet here I am still searching for that escape to freedom. Freedom from my own mind. My brain still captured and in bondage of that thing I call Depression. Some weeks seem like freedom is in sight, then that darkness overshadows me again. Giving up would be so easy to do, but where would that get me? So everyday I fight for my life and maybe just one day my fight will end  and my miracle will come. I sat in my doctors office just this week, drowning in a pool of tears;’ I’m just exhausted and tired of fighting’. As he looked helplessly into my dying eyes. My eyes told a story that never could be written. But hope is what keeps me alive, what keeps me moving, what pushes me to never give up.

After 2-3 years of trying practically every type of antidepressant and anti-anxiety medication on the market, every cocktail of drugs, psychotherapy, mindfulness therapy, talk therapy, acupuncture, inpatient assessments, a two month outpatient program at St. Clares Hospital, ECT- Electro Convulsive Therapy and I’m sure the list can go on. It was FINALLY decided that I was treatment resistant; no form of therapy was working. Is there any wonder I could become discouraged and lose hope? But despite everything, I make  the best of every day and try to live above my illness and circumstances.

I still believe that somehow, I am going to overcome this horrible existence that this illness as brought upon me. Treatment resistant or not, I am going to beat this! ‘I will look to the hills from whence cometh my help, my help comes from the Lord who made the Heavens and the Earth’. Its in those moments when I feel I can’t go on, when I have nothing left to fight with; that I have no choices left but to turn to God. It’s those times I find  hope, strength, peace and courage to go on. Many times over the pass few years I had to say, ‘Jesus take the Wheel’ (a song by Carrie Underwood). I can’t do this anymore, Jesus you take my wheel!

Just this week, I was at a very desperate place, a very dark place. I decided to do a little research of my own and see if there was something I was missing; I came across an article (two really, one pertaining to the other) that looked really interesting and hopeful, it was called Trans Cranial Magnetic Stimulation. Then of course I realized it wasn’t available in NL….surprise! But I thought that maybe I would share it with you and make this treatment more aware. And maybe one day, it could become available here; now that’s faith. Check it out:

 

This article was published by The Mayo Clinic, describing the treatment:

Transcranial magnetic stimulation
Overview
Transcranial magnetic stimulation (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective.
How it works
During a TMS session, an electromagnetic coil is placed against your scalp near your forehead. The electromagnet painlessly delivers a magnetic pulse that stimulates nerve cells in the region of your brain involved in mood control and depression. And it may activate regions of the brain that have decreased activity in people with depression.
Though the biology of why rTMS works isn’t completely understood, the stimulation appears to affect how this part of the brain is working, which in turn seems to ease depression symptoms and improve mood.
Treatment for depression involves delivering repetitive magnetic pulses, so it’s called repetitive TMS or rTMS.
Mayo Clinic’s approach
Why it’s done
Depression is a treatable condition, but for some people, standard treatments aren’t effective. Repetitive transcranial magnetic stimulation (rTMS) is typically used when standard treatments such as medications and talk therapy (psychotherapy) don’t work.
Risks
Repetitive transcranial magnetic stimulation (rTMS) is a noninvasive form of brain stimulation used for depression. Unlike vagus nerve stimulation or deep brain stimulation, rTMS does not require surgery or implantation of electrodes. And, unlike electroconvulsive therapy (ECT), rTMS doesn’t cause seizures or require sedation with anesthesia.

This article was published a few years ago but obviously nothing was ever done about it:

New depression therapy should be covered in N.L. say doctor, retired nurse
CBC News
December 11, 2015

Trudy Bradbury says her depression was successfully treated with drugs, but many others are not as lucky. (CBC)

A retired nurse from St. John’s and a doctor in Toronto are arguing that a new treatment for depression should be covered by the medical care plan in Newfoundland and Labrador.

“I would ask them to please have a look at this treatment because so many lives depend on it,” said Trudy Bradbury, who worked as a nurse for 34 years, and suffered from depression herself.

“I know how it feels. I experienced it 13 years ago,” said Bradbury.

“I was one of the lucky ones. I responded to medication and was able to return to work within a few weeks.”

She said about one-third of people with depression do not respond to drugs, and now she’s asking the provincial government to pay for a different kind of therapy.

Repetitive transcranial magnetic stimulation (RTMS) is a treatment that was approved by Health Canada in 2002, and is already covered in Quebec and Saskatchewan.

Re-setting the circuits

Dr. Jonathan Downar, a Toronto psychiatrist who specializes in brain stimulation, said RTMS is effective, with two out of every three patients showing complete or partial improvement.

“It’s a technology that was developed in the 1980s and 90s, where you can stimulate the brain without having to open anything up. So it uses a powerful focused magnetic field to directly activate the neurons of the brain,” he said.

The treatment works by stimulating neurons in the brain. (CBC)
​Downar, who offers RTMS at a private clinic in Toronto, says the treatment costs between $1,500 and $3,000, with patients needing 20 to 30 daily sessions.

“RTMS, it’s like exercise, it isn’t like surgery,” said Downar.

“So when you apply the stimulations, it’s like re-setting the circuits. It’s like when you re-set your watch, after a few months it will gradually creep back to the way it was again.”

Patients need occasional booster sessions, he said, but with proper treatment can stay well for a long time.

“My message to the Newfoundland government is please focus on the new technology that’s out there,” said Trudy Bradbury, who is motivated now by the depression of someone close to her.

She said the cost of running a treatment program in this province, and covering it under MCP is worth it, because patients will be able to go back to work, and lead productive lives.

It’s also an alternative to electroconvulsive (shock) therapy, which has side effects like the loss of short-term memory.

Cost vs benefit

Jonathan Downar said the cost of RTMS is coming down, with research on how to shorten treatments.

He also said it also provides access to care within weeks of being diagnosed with a mental illness.

Jonathan Downar is a Toronto doctor who says the long wait list for one-on-one psychotherapy means other treatments have to be offered. (CBC)
“We will never have enough psychotherapists do one-on-one therapy for patients,” he said.

“So we have to figure out a way to use our existing supply of physicians and other mental health workers to see larger numbers of people, while preserving quality treatment … to provide good psychiatric care for everybody who needs it, not just for the lucky ones who make it through the wait lists.”

Post-traumatic stress disorders and other conditions could also be treated with RTMS, said Downar.

“It’s being explored for addiction to tobacco and to alcohol and to other substances. And it’s also being used in some cases for OCD and eating disorders.”

Downar said the magnetic stimulation therapy should soon be approved for funding in Ontario. Alberta is also considering it, but in Atlantic Canada the only facility is at Dalhousie University.

Bradbury said she met with health officials in the Paul Davis government to make her pitch, but got no commitment.

A Detour In Lauren’s Journey

The doctor’s voice pierced our ears with news we did not want to hear. News that we were not expecting to hear but here he was saying theses awful, hopeless words. It was Lauren’s week of intense therapy that just so happen to fall on the same week has her Cerebral Palsy Clinic, this is where we meet with all her team; the orthopedic surgeon, neurologist, pediatrician and the rehabilitation team. We sort of had ourselves somewhat prepared for the week because we knew some things weren’t going right with Lauren. As it is with Cerebral Palsy, every day is different and each  day brings new challenges. 

To begin the day we sat in the assessment room waiting for Lauren’s Orthopedic Surgeon to enter the room, wanting to lock the door and not have to listen to what he was going to say. We suspected that something wasn’t right with Lauren’s already troubled hip, she said  ‘it hurt’. She already  had reconstructive surgery done on her left hip, but we were expecting the problem was with her partially dislocated right hip. The doctor entered and the look on his face was not good. He knew what our aim and goal was for Lauren; which was a rhizotomy  surgery in Montreal and both hips were required to be in perfect working order. The rhizotomy surgery was our one and only earthly hope of Lauren ever having any form of mobility outside a wheelchair.  We looked at him and said, “you have bad news”.  He did not deny it, but why couldn’t he, it was what we wanted; to be wrong. 

He looked at us with a defeated, hopeless and helpless look and said, “the left hip that she had repaired is totally out of socket again.” The left hip?  That one was repaired, we thought the pain she was complaining in was from the hip that wasn’t done. And he said,”the right hip is 50% out of socket.” So where does that leave us; we need two good hips to even be considered for the rhizotomy in Montreal. And now neither hip is in good standing. “There is nothing else we can do here at the Janeway for Lauren, get her to the Shriners Hospital as soon as possible.” From his standpoint Lauren would be confined to a wheelchair and we would need to start accepting that fact. Our hopes were crushed, the only hope we had was now gone. We cried our way through the process because here we were looking at a little four year old girl who’s greatest hope was to walk. “But I want to walk Mommy”, “But I want to walk Daddy”, “It hurts”, “I want to do it”.

We just wanted to go home, but first we had to see the Neurologist because her seizures were still not under control. Nothing was working, medication was only making her sleep more often. So we waited for the neurologist to plead for help to stop the seizures. Our fear with her having so many seizures was that more brain damage would be done and that we did not want to happen. Lauren is so intelligent and bright and we want to keep it that way.  Her neurologist said, “there is no quick fix, no cure, just trial and error.” So now we try another medication and “please God” this would and will work.

Lauren’s physiotherapist came in while we were preparing to leave and we told her we just needed to go home and to cancel the remaining appointments for the week. We thank all the team for their concern and support, they really do care and love Lauren. But we just had to go home and let all of this just sink in and deal with the hurt and feeling of loss and hopelessness. There is a grieving process that goes along with this traumatic news.

We arrived home and just sat and looked at each other; defeated! Once the initial shock had worn off, it was, “okay what do we do next?” Get in contact with the Shriners  Hospital in Montreal. So Lisa called Lauren’s doctor there and left a message to get back to us as soon as possible. While Lisa was doing this, I was sitting on the sofa playing with Lauren, when my phone rang. Hello, the man said, my daughter received a text today about a little girl who the Janeway had given some bad news and that she needed to get to the Shriner’s Children’s Hospital in Montreal as soon as possible. He said, “is any of this making any sense to you?” To which I said , “yes, I sent the text to eight of my siblings today to inform them of our devastating news concerning Lauren, who is our four years old little girl who has cerebral palsy. Well he said, “this is no coincidence, but divine intervention, because I’m a Shriner and I will do whatever I can to get your little girl to Montreal. My heart leaped within me, when I felt so low, angry and no hope in sight; God had sent us a sign that He is right by our side and it’s going to be okay. This was no coincidence. What are the chances that this text and I have no idea how it could have been sent to her; I only sent eight texts and they were all to my siblings, so how could this girl, who’s father just so happened to be a Shriner from Gander, receive my text, it was nothing short of a miracle. And my texts were all out of province. God will move, He will intervene.

So after such a stressful and defeating day, God had intervened once again. Sometimes it’s in the little things, when our faith was so small and we had more questions than answers ; God was still working on our behalf. So if you are reading this and you are discouraged, hurt, going through the storm of your life, in the valley of despair; God is there, He will intervene, just never give up! “He may be four days late but He is still on time.”