I’m taking a few minutes this evening from my planned activities to share some thoughts with you. Especially for my family and friends. Today begins a very exciting, yet emotional weekend. It was 38 years ago this morning that I became a part of this world. 2 years ago today, on my birthday, I turned to one of my best friends and said that something just wasn’t right with my body. The next day, which will be 2 years from tomorrow, will be the anniversary of the day I woke up sick, and I haven’t been well since. Following that comes Mother’s Day to wrap up the weekend.
I had 2 Dr appts scheduled today, one with my Lyme Dr. I had just been in there on Monday, but have had a few days of feeling better and having some relief of some of the worst symptoms. Today, although I was sleep deprived, and being forced to sit up and ride around all day, I actually feel pretty good. In fact today may be the best I’ve felt in the last year. Truly a wonderful birthday gift, and a reminder on my special day to be mindful to be grateful for the blessings in life. Today may be the only day I have feeling this good, and that is okay, because I know that is how this disease works. But I am cherishing every minute of the day, not worrying if it will last until tomorrow. If I’ve learned anything in my 2 year journey in treating Lyme it’s that you have to take advantage of the moment you are in, because there are no guarantees for tomorrow. The Dr was pleased with some recent changes and responses to treatment. Everyone from the receptionist to the nurse said how good I look and what a difference they can see in me since I was last there on Monday.
I ended up having a really remarkable birthday. Enjoyed the day with my mom, cheating on my Lyme diet and having something yummy for dinner with her. I’m not ashamed to admit I am a Harry Potter fan, and because of being too sick I never made it to see the last movie when it was released. But thanks to my mom I now own it, and to rest up for this weekend’s plans I had decided to just have a quiet night tonight and finally watch this movie I’ve been wanting to see for so long. Will be a great way to end the day, after having what turned out to be a really nice day. Instead of stress and emotional Dr visits, it was nothing but good news, sunny skies and warm temperatures.
As tomorrow is the 2 year anniversary of my becoming disabled, I am working on a post to share my feelings about the past 2 years including some of what I’ve learned through my experience. That brings me to the second part of this exciting yet emotional weekend. It’s still so hard for me to believe that it has really been 2 years of hell to get to this point. And in all honesty I have to say that at many points in the last year I wasn’t sure I’d make it to see my 38th birthday. So just making it this far alone feels like a major accomplishment to me. It’s also an emotional journey to sit back and think about the past 2 years. With the memory loss I’ve experienced some parts of it are foreign to me, like reading my journal is reading a book I’ve never read before. But the 2 years have brought many things to my life. Many things that have been awful, draining and life altering events. Along with many wonderful things…those silver linings and glimmers of light shining through the clouds. While stuck in so much pain and suffering it’s very hard to see the proverbial forest through the trees. But dwelling on the negative does not help get your life back, and does not help the healing process. So as I’ve been reviewing the past 2 years of illness and treatment, I’ve been approaching it from the angle of all the good that has happened because of Lyme disease. I look forward to the post I’ll be putting up this weekend that delves into the side of illness that people tend to forget about because of all the pain and suffering involved with the illness itself.
And then comes Sunday, Mother’s Day. This year we are combining Mother’s Day dinner with Birthday cake with family. Being that Mother’s Day falls right after my birthday and my sickerversary, it falls right in line with the rest of the weekend and reflection. Besides the fact that my mother gave birth to me and gave me life 38 years ago today, she is also the reason I still have my life, and why I have hope for getting the life I lost to Lyme back.
A parent’s love is something that cannot be understood by anyone who is not a parent. I have 2 cats, but it’s not quite the same thing as having your own child. The one thing I’ve learned through my experience with Lyme disease, and in meeting so many other victims of this affliction, is the lengths so many parents and families will go to for their child or family member. I have not worked in almost 2 years since becoming so sick. I lost my apartment shortly after beginning treatment with my Lyme Dr because insurance does not pay for long term treatment. As I was facing horrendous out of pocket expenses, I had no choice but to move home, 18 years after moving out. Moving back home as a disabled adult is not easy. Moving back home and being healthy would not be easy on two people who are both very independent and used to living alone. But there was no question for my mother as to what would happen. In fact I remember the exact moment the decision was made, and at no point did I have to “ask” if I could move home. It was implied that the option was there, and facing what I knew was ahead it was the only answer.
From that day in October 2009 until today, everything in my mom’s life has turned upside down. The financial drain of treating this disease. Feeling helpless to help her child as he’s suffered. Having to sit back and watch the destruction this disease causes, as well as the ups and downs of treatment has got to be exhausting and mind boggling for family members, and especially for a mother.
As her house has slowly been taken over by me and my cats, as she has had to learn to change the dressings on my PICC line, as she has had to spend her future on my health, and as she has watched me day after day struggle for improvement and to reclaim my health, she has never uttered a complaint, shown any anger about the situation, or questioned me or my illness. She has done what needs to be done, no matter how difficult it is for her as a mother to face.
I talk to so many who do not have the support of their family the way I do, and so as Mother’s Day approaches I also take the time this weekend to be grateful for the wonderful support and love of my mother, to not take it for granted and to remember that so many do not have the luxury of family support the way I do. For all she has done, from trying to make me comfortable, to dealing with the grief and loss caused by this disease, she has never left my side or stopped praying for me day after day.
I also have to mention my other family members who do so much to help me. My aunt and uncle have been by my side through all of this as well. As with my mom I have never had to defend the fact I’m sick. They’ve never questioned the validity of what I’m going through, or doubted me as I learned the hard way about this controversial disease and shared what I learned with them. Instead they experienced anger, grief and disbelief at a medical system that would treat patients or a disease the way we with Lyme are treated and regarded. In addition they’ve spent large amounts of money in helping towards my treatment costs. From buying my supplements and vitamins for me, to replacing my new laptop for my birthday after my old one died, the love and support has been unconditional and unending, and I am extremely grateful to them for also being by my side through this. (Not only did they get me a new, really nice laptop…but my uncle drove an hour and a half just to deliver it to me a week before my birthday, knowing that one week without a laptop feels like months to someone stuck in bed sick with no other way to be in contact with the world.)
As I return to the rest of my birthday evening, basking in the glow of the love of so many friends and family, a truly beautiful spring day, a Dr’s appointment with good news and a day feeling better than I have in many, many months, I also continue to reflect on the importance of the events of this weekend.
Celebrating my birth, while fighting for my life. Thankful that I was able to make it another year through this illness. Amazed at the 2 years that have passed, and astonished at the things I’ve done and survived that 2 years ago I never would have believed I could do. And finally, so thankful this Mother’s Day to celebrate a wonderful mother who so selflessly gives of herself on a daily basis to try and help me get my life back. My mother raised me by herself, a single mom who created a career as a computer programmer, and found a way to raise me with morals, faith, strength and strong values. Without the life skills and lessons learned from and taught to me by my mom, I would not be nearly as equipped with the tools that I need to survive this dreaded disease, and find a way to fight for my life and be grateful for each day that I am given.
I love my family and friends more than words can describe. I will talk more about the support in general I’ve received when I share my thoughts on my 2 year sickerversary. But on the bottom of that pyramid of friends and family that holds me up and supports me through this trial of life, is my mother. The woman who tirelessly faces day after day not knowing from one moment to the next what to expect from me or my body. I would have been lost a long time ago if not for the help and love of my mother. And only because of her do I have have a shot at getting some form of life back. So on this Mother’s Day weekend that mixes with my birthday and sickerversary, I am extremely thankful for the wonderful example and person that was entrusted with my life, and for all that she has done for me as a mother, but especially during these last 2 years of illness, for all that she has done to support and help me fight to get to the finish line.
Wishing all of the mothers a very happy and special Mother’s Day. Especially those mothers with Lyme who find a way to raise their children day after day while being plagued by this disease, as well as those mothers who have to watch their children suffer so needlessly with this disease yet never stop supporting or helping their children. Several times during my journey other “Lyme moms”, as well as those not touched by this disease, have told me a mother is only as happy as their unhappiest child. I have found this saying to be so true, yet all these mothers keep up the fight, not letting on to how much they suffer as they watch their child suffer.
To my own mother I wish a very happy Mother’s Day, and thank you for all you’ve done, all you’ve had to put up with, and all that this disease has put you through. To my family, a special thank you for the love of family and all the support that goes along with that. And to everyone reading this…I wish for you the blessing of unconditional love of family. For those struggling for the support of their family, I pray for understanding and guidance as you and your family attempt to come to terms with this disease. Thank you for taking the time to read this and reflect a little on the important events of this weekend to me and my life. I also ask that you excuse any typos or grammatical errors. While feeling better today allowed me to do more things than I ever expected on my birthday, my body is not used to it and extremely tired and just wanting to lay down. But before the day ended I wanted to share some of my feelings with you all. In addition I want to thank so many of you for the wonderful birthday wishes, emails, comments, texts, gifts, cards, prayers and packages. At midnight last night my phone started going off with 23 messages wishing me a Happy Birthday. As of 5 minutes ago I am still getting texts and messages. Today my email is full of pages and pages of notifications from Facebook telling me of messages people have left for me. I am truly touched by such an outpouring of love from all of you, so many of whom I’ve never met in person. While Lyme has been a horrific experience, the wonderful people and their loving soul’s in my life has made me a better person. Thank you again for making today such a special day. No matter what I’ve lost to this disease, what I’ve gained and been given in return outshines any thing this disease has taken away. Thank you all for helping me to see that, and learning to find that my glass is really half full through this disease, and then taking it one step further and filling my glass all the way so there is no question whether it’s full or empty, because I know it is overflowing.