Wednesday, October 16, 2013

Parenting with An Illness

Taken weeks before the bite that lead to Lyme Disease last year.
Parenting is quite a task. You want your children to have the best in life. So what happens when the parent or both parents become very ill?

I was diagnosed with Lyme disease 10 months ago although my health started crashing a little over a year ago. My son had just turned 1. There were days when I didn't know how I was going to function yet take care of my son. Its one thing to be a parent but a whole other ballgame when you're a single parent.

There were moments when fear struck and I went to very dark places in my thoughts. Many days and nights I cried asking God to please heal me because I need to be there for my son. But every morning I was just trying to get out of bed in pain, fatigued, foggy, poor balance or whatever else struck me that day. But my son would look at me in his crib with those big brown eyes and he gave me the determination to get our day started. Even when he would cry out for me or when he was just simply giggling it gave me energy and hope.

When I reached out to other parents on the forum called The Healing Well I knew I was not alone. All of them like me had one thing on their mind and that was getting well for their children and spouses for those who are married. Whether they were/are bedridden, hospitalized or able to function but were still ill.

So what I did instead of thinking about a lot of dark thoughts was turn those into prayers and meditation. I won't lie there were challenging times when I wish my life was different and that I wasn't alone everyday with my son. But for some reason I believe that this illness is gonna make me so much stronger as a mother and a person. It's also preparing me for my future husband (whomever and where ever he is).

Dealing with an illness takes a lot of patience as well as raising a child. I've had to learn to grow my patience even more. Between waiting for my complete and total healing, numerous doctors appointments, maintaining my household and also raising my now two year old.

A few things I would like to tell other parents that are dealing with an illness is to try to remain positive, focus on other things besides your self such as your children, if you're married write down things you would like to do after you heal with your family and lastly don't be afraid to ask for help.
The last one was the toughest one for me. I was always so used to reaching out to my mother when I was in trouble but now that she is deceased I have to reach out to other family and even friends.

Also during this time I have become very close to quite a few single mothers who have tremendously stepped up and helped me out. We have created our own support group to lean on each other. They might not be physically ill but a few of them have some emotional stresses, financial challenges and we're there to really pray and support one another. There are also married couples who have embraced us and help us out, give advice, talk when needed and they are a glimmer of hope for me as well.

If you can reach out to other families like yourselves and whether its for help or you just want somebody to fellowship with it really does make a difference.

For those parents and loved ones who are not ill the one thing you can do for parents with illnesses is to reach out to them and ask them how can you be of service to them. Whether it is a phone call, a visit, even a letter goes really long way. I have a good friend in New York City who is like a sister to me and she got groceries sent to me because she knew I was low on cash and needed them. It meant so much to me to know how much people cared.

There is one parent on the forum I belong on who truly inspires me. Her kids are now grown but most of their childhood if not all of it she was very ill. She told parents on the forum that she was afraid that her kids would grow up to resent her. What she decided to do was home school her children. This effort took incredible strength and courage on her end. As they got older they told her how much they loved her and that they never resented her.

Also there is nothing like a kiss or a hug from your child or having them cuddle next to you when you're not feeling well. It's truly healing. My son plays a game with me. He will run into the bedroom and run under the covers and it's as if he is waiting for me to find him. Children are healing and beautiful angels sent from God and if you have a spouse please let them help you and also accept their love.

I will leave you with these few pointers that I found to be personally helpful:

  • Pray
  • Meditate
  • If you can move then do light workouts and have your family join you like yoga or stretches.
  • Do small activities with your kids like color, read a book to them OR they can read to you.
  • If you have older kids talk to them about their day and if they want to know how you are feeling tell them the truth. Teens want to know what's going on and are helpful.
  • If you can't attend school activities have someone record them or Skype.
  • Try to stay in a positive place're allowed to go to dark places at time (we are human) but don't stay there.
  • Fellowship with other parents. Invite them over...they can be helpful.
  • Write in a journal (things you want to do with your family once you're well, dreams and goals for your family).
  • Try to do some of your favorite things that don't require a lot of energy (I know it's me). I can't African dance yet but I can watch and get the energy.

I'm with you in this and light.

(This is part one of this article as I know some illnesses aren't temporary and are terminal, stay tuned for part two in the near future).

Tuesday, October 1, 2013

Healing from Lyme Disease...My Personal Journey

Last September will be a month I will never forget. I was full of energy between running 6+ miles a week, African dancing, going out on the weekends, being able to play with my son on the floor, performing spoken word and do whatever I wanted to do. I had just received a full time job offer with my organization after being either unemployed or working part time with no benefits since June 2011. I was very happy and had so much planned for our (my son and I) future.

Ten days after I accepted the offer I went for a power walk with some coworkers on September 20th. Instead of walking along the paved trails we decided to take a nature walk on the Theodore Roosevelt Island in Washington, DC. I’m all about walking and running on pavement. I’m not one to walk through trails that are full of bushes, trees and dirt paths but I figured let me do something different. As we were walking I remember feeling something on my right arm. When I looked down it was some sort of bug and it was hard to get off. I finally got it off of my arm. I felt fine as it didn’t leave a huge mark (just a regular bug bite) and we continued the walk.

Days later I remember having a deep chest cough. I didn’t know where it came from so I went to CVS and bought some Mucinex. Even my boss had commented on my cough when I worked one Saturday at National’s Stadium for an event that my organization was hosting. The last week of September despite the cough that wouldn’t go away I kept running and even went to African dance class. No one could have told me a year later that would be my last time running or dancing.

October I felt like the Phoenix as I crashed and burned accept I didn’t rise from the ashes. It went from a cough, to shortness of breath, two visits to the emergency room, heart palpitations, night sweats, weakness in my legs, numbness in my face, fingers and toes, internal tremors, severe fatigue and the list goes on.

After seeing several specialists no one could figure out what was wrong with me. I was told I had pneumonia, pleurisy, anxiety, lupus…all kinds of diagnoses. I now felt like I had the flu on top of all of this and was experiencing muscle spasms, chills, soreness in my feet, joint aches, a lot of floaters in my eyes, twitches and for some reason the right side of my body was becoming weaker than my left side.

Several weeks later and numerous days off from work my friend from college emailed me in the middle of the night on Facebook. She said she was worried after reading my numerous status updates that kept talking about how sick I was and not getting better. She referred me to her integrative doctor in Washington DC.

I prayed that morning before calling and that maybe…just maybe this doctor had some answers. I called the day I read her email which was on Tuesday, November 20th and spoke directly to Dr. Sakiliba Mines of the The Institute of Multidimensional Medicine and she fit me into her packed schedule that day. It was Thanksgiving week and I wanted to feel better. It was only my second Thanksgiving as a mother and this is not how I wanted to start out our holiday season.

After our first visit she said from my symptoms there was some sort of infection brewing inside me and also something neurological. I brushed off the neurological piece because I just knew my brain was intact and healthy. I received my first Vitamin IV infusion that day…the first of many. She also put me on numerous supplements such as Vitamin C powder, Magnesium and a Probiotic.

After a sickly Thanksgiving I came back to DC after traveling from New York City and leaving a worried grandmother and family behind and got an MRI and a ton of labs done (Comprehensive Blood Panel). The MRI came back the very next day. I sat with my doctor and my eyes went right to the bottom of the report that stated there were not only spots on my cerebellum (small part of your brain which controls a lot of your motor skills, anxiety, emotions, etc) but inflammation and unspecified matter particularly on the right hemisphere of the brain. The diagnosis on the sheet of paper said, “Worrisome for this age group…potential Multiple Sclerosis.” I’m glad I was sitting down because I would have fallen to the floor because I began to feel faint. I began to sweat and tears rolled down the side of my face.

My doctor read the report twice and looked up at me and calmly said, “I’ve seen these results before in my patients with Lyme Disease…it mimics MS and a lot of other disorders.” She knew I was upset and gently spoke to me by telling me, “I faith in you and you will make a full recovery.” We stood up and before I left her office to go do more lab work she hugged me. I’ve never had a doctor hug me before. She was just what I needed at that time…someone caring and compassionate. I did more blood work that day which included a Western Blot/Lyme titer before receiving another Vitamin IV infusion. A few days went by and on December 14th I received a call from her office that the test came back positive.

I was relieved to have a diagnosis but I thought that Lyme couldn’t be hard to cure. Not knowing at the time that there isn’t a cure (well at least on the books) but the bacteria can go into remission. December 14th, 2012 started my Lyme healing journey.

So you might be asking yourself…what is Lyme Disease? According to Wikepedia this is what they say, (Lyme borreliosis) is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.[1][2] Borrelia burgdorferi sensu stricto[3] is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii cause most European cases. The disease is named after the towns of Lyme and Old Lyme, Connecticut, US, where a number of cases were identified in 1975. Although it was known that Lyme disease was a tick-borne disease as far back as 1978, the cause of the disease remained a mystery until 1981, when B. burgdorferi was identified by Willy Burgdorfer.

Borrelia is transmitted to humans by the bite of infected ticks belonging to a few species of the genus Ixodes ("hard ticks").[5] Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema migrans (EM). Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early.[6] Delayed or inadequate treatment can lead to more serious symptoms, which can be disabling and difficult to treat.[7]

When I found out the news I called my grandmother. I know it was hard for her to digest the fact that I had an illness. According to her she didn’t think it was fair. I had been through enough in her eyes. I totally agreed. I told numerous friends as well that live in the area as my family is a few hours away. I did receive support but some were very fearful. I also heard my fair share of comments and opinions from people. Enough to drive me to tears. I was saddened by the various comments and became depressed and felt isolated at times.

Looking back I don’t think some people knew what to say. They cared about me and wanted the best…but sometimes what might be best for others won’t be for you. They didn’t think about my job, my medical team that God blessed me with and my inner peace living in the DC area compared to the NYC area. I decided to stick it out and I prayed! I pray morning, noon and night. I don’t start my day off without prayer and at night I’m praying in my prayer room (I transformed my walk in closet at that time into my prayer closet). At the end of it all…I’m never alone because I have God on my side. Meditation and yoga also became key to keeping inner peace.

God blessed me with new friends to add to my circle during this time in the woods. One was a neighbor, “Janice” and looked at me one day in mid-October and said, “You don’t look well.” I don’t know if it was the dark circles under my eyes, the fact that my right leg was going weak and I felt like I was dragging it along or what. But she knew something wasn’t right. This was before I really knew what was wrong. She gave me her number and she has been by my side ever since. God will send people to stand in the gap.

I not only had Lyme Disease but two coinfections, “Bartonella and Babesia” which are parasites that mimic malaria. A lot was going on and I was out of work for one month with no pay because I was still on probation being a new employee. I felt so alone…so isolated from the world. People couldn’t understand what was wrong even after I told them. Also being a single mother made it even scarier. My son was and still is my motivation to get totally well again. I won’t take living with a few symptoms…I will be symptom free one day and soon!

It’s now a year after the bite and I have had over 50 IV’s, numerous supplements, detoxification of my body (which is important with Lyme and any other illness) also the average person should detox regularly whether it’s juicing, aqua chi foot therapy baths, colon hydrotherapy, infrared saunas, massages, acupuncture, kinesiology and detox baths which include dead sea salt (or if you aren't allergic like me epsom salt) and food grade hydrogen peroxide. My diet is pristine, gluten free, dairy free and sugar free because the bacteria feeds off of this stuff.

I’ve lost a total of 25 pounds due to this illness because the bacteria got into my muscles and tissues. I plan on getting most of it back (I miss my muscle mass and fitting into ¾ of my wardrobe). I look at myself in the mirror and tell myself how much I love myself, that I am a demonstration of God’s healing and that I will make it. During this illness when I had my bad/so-so days I would work on my dreams. Sickness is a serious reality check. I told God if I check out tomorrow (and there were days when I thought death was knocking at my doorstep) that I was thankful for being a mother, having a great family, friends, belonging to a dynamic sorority (Delta Sigma Theta, Sorority, Inc) and being His servant while on earth. But if I got one more chance I would make sure that my poetry book would be published, my cafe would open, I would join ministries that I kept putting off and be the best mother I could be to my beautiful son! During the thick of the sickness I worked slowly on it but my first poetry book is finally in the hands of my graphic designer for final layout and will come out by the end of the year.

I have 10 symptoms remaining which are a lot better than the 30+ I had in the beginning. I will admit…they are daunting and scary at times but day by day I’m grateful to God. I have breath in my body, I’m able to do more, God is cleaning house from the inside out and my faith is stronger. I get to watch my son grow and develop and I thought my family got closer when my mother was sick and passed away…well we became closer during this time. Everyone is determined to see me cross that finish line.

If anyone ever tells you that Lyme Disease is a joke or is easy to heal from…tell them to call me or better yet visit my buddies on the Healing Well forum. Lyme Disease is the great imitator. It can mimic MS, ALS, Parkinson’s, Lupus, Pneumonia, Rheumatoid Arthritis, Chronic Fatigue Syndrome, Fibromyalgia and more chronic illnesses. A great doctor won’t go based on solely labs…they will clinically diagnose you because the bacteria is so smart that it can hide itself in tissue since it is shaped like a spiral, hence the name of the bacteria “spirochete”. It’s not a disease for the financially broke (and I’m broke)! About 95% of the LLMD’s (Lyme Literate Doctors) or a Naturopath, Herbalist, etc doesn’t accept insurance. It’s not that they don’t want to accept insurance…it’s the fact that this is such a controversial disease that insurance companies consider most treatments “experimental.”

But wait until the insurance companies get a rude awakening…because every year thousands of people are misdiagnosed and guess what…when they are all properly diagnosed the insurance companies will have no choice but to open up!

I plan on writing more about various health issues and figured I might as well start with myself. Stay tuned as I plan on starting a health blog and hopefully will write a column for a magazine J

If you’re chronically ill, don’t give up the fight! Keep pushing forward. You have people who love you and God is on your side. This too shall pass…I tell myself that every day and have faith that it will pass and soon.

My name is Serena T. Wills and I have Lyme Disease…but it doesn’t have me!

God speed.