From Sad to Sadder, Glad to Gladder
Me.. March 2 – 17th, 2009
Rheumatoid Arthritis moved into my life about eighteen months ago. This really has been a very sad and challenging thing to deal with on many levels, the worst of which has been emotionally. I had been diagnosed with Lupus at first in 1994 for a mild bout but then had a more moderate flare-up that lasted from 2003 to late 2005. I had done a lot of research when I was diagnosed with lupus and knew enough about auto-immune diseases that I thought that this bout was a lot like the Lupus at first, and I sighed, thinking that it would make life more achy and fatigued for a very long year or two, dealing with swollen joints, etc and then it would go away again. I did not even bother to research RA when I learned of it as I thought that I knew what I needed to know about it (having studied its sister disease Lupus) and knew that it could deform the hands, but just took it in stride. I surely knew that I would be over it in a couple of years as I remembered that, like Lupus, RA comes and goes in "flare ups". I had seen the horror of several patients in the medical books with their horrifically twisted and malformed hands and joints, not thinking that the disease would be that bad for me. I really did not believe that it would affect my life at all any differently than the Lupus had. I would rather not have to go through another flare up of these flipping, flopping auto immune diseases, but figured that if I had to live a couple of years in a Lupus-like flare-up I would be annoyed, somewhat tired and dealing with one stupid joint-swelling to another, never leaving damage, but ever seeking somewhere to settle its nastiness in my body.
Then, one rainy day in late April, I got up out of my chair at work to use the ladies’ room and I felt like I had a knife piercing through my hip with each tiny movement of my body. It had been sore through the day, but I was not expecting that pain at all. It was embarrassing because I was very sure that my agony was showing with every painful step that I took. I thought "what the heck????". Walking was suddenly and harshly VERY painful. I thought that I must have twisted or strained it somehow and much to my relief, it went away a few days later.
Then it rained again the following week and again, I could barely walk. My fear was crippling in and of itself.
I called the rheumatologist immediately and he had me come straight there. He started me on some more aggressive treatment giving me a drug that is a low-dose treatment used for cancer patients (this is commonly used in moderate to severe cases of RA). I was not crazy about that but I took it religiously. I did not notice anything better at all, but now I was left ill the next day or two after I had taken that medication from the nausea that it was married to. My joints were continuing to get worse, so in the summer, the dr decided to put me on some bimolecular drugs that stop the immune system from working. (As an auto-immune disease is your body’s immune system out of whack. In my case it is good cells attacking the good cells that make up the fluid in the joints which quickly leads them to becoming damaged joints.)
I started to take injections weekly (I do it myself!), but did not end up starting them until early December. Life got a lot worse after that. I would have immediate relief of the pain the day after I wouldtake it which would last for 2 – 3 days but the rest of the week was complete hell with the joint pain.. By the time that I started taking this drug (called Enbrel), I had a "joint count" of 30!!!!! in just about 18 months it was already in 30 joints!!!! I felt completely out of control of my body and how this was affecting my day to day life and I started to get VERY depressed! To make it worse and just to add another little complaint in my list of whining.. this needle hurts like hell frozen over. It feels like liquid fire… or acid being pushed into your system. It truly is awful. I have had many bruised feelings or stinging needles in my life, but this really tops them all. I sometimes stare at that damned stupid self-inject needle for hours before I just gather the courage and do it. (As a side-note, my sister was once with me when I took it and sucky as I am, I held her hand while I used my other hand to inject. She said that my face went purple-red and that I was shaking with pain as the acid- hell went into my body.)
Life had started to really suck by the time December came around. To top that off, the man that I had an amazing relationship with for three years (albeit it was a very long-distance relationship) started to see someone closer to home. Truly and deeply in love with me, this other girl, although not at all in love with her, met several criteria in which he was seeking and he decided to give it a try. Great. I cannot begin to tell you of the depth of our love but just know that it was devastating in the worst kind of way. I was truly despondent. I cried. I cried and I cried and I cried.
Then there was my job. I work for a great company and it is a family-run business that truly has gone the mile for me before, but in this very poor economy and my failing health, energy and wellness, I was really feeling the fear of not being able to produce due to my waning wellness. I had lost my beloved, I was losing my health on an ever-quickening train crash, I was afraid I could not perform my job well and no matter how hard I wanted to be OK, I could not get my Easter-self back.
It had started as a black Christmas for me. Who wanted flashing lights, gaity and Christmas cheer when their life was quickly spiraling down, down, down? I had done a bit of early shopping, but was not even half way through my list of gifts two days before Christmas. I needed to finish shopping in the snowstorms with my car that so lovingly decided to get a flat the week before Christmas!!! Can you believe it??? I was driving around (sooooo very carefully) on my spare tire. I had promised the mechanic that I would avoid highway driving, that I would come back as soon as I had the money to change all of my tires and that I would be VERY, VERY careful. What a joke. What a really, really, bad, bad joke.
On the evening of the 22nd of December, my beautiful little Victoria looked at me and said "Mommy, I don’t remember the last time that I saw you smiling. I can’t remember what your laugh sounds like and I am only used to you crying and crying and crying every single day when it is nearly Christmas." "Can we put up the Christmas decorations tomorrow Mommy? Please?" My heart broke. I cried again. I am such a terrible mother!!! How could I put m sadness and broken heart way, way, way ahead of my children’s well-being and happiness. I just could not face the fear of trying to be happy putting up a tedious and frustrating Christmas cheer while pasting a fake smile on my face the way that liquid eyeliner sticks to your eyelids. It just sits there loudly if it is put on the wrong way showing everyone that looks on that the person wearing it should really try something else.
After Christmas, things turned even worse. I did manage to get my tree up on the 23rd (it took all day) and I managed not only to finish all of my Christmas shopping, but also to get it wrapped onthe 24th (finishing after 4:00 in the morning). I was completely exhausted and beyond aching with every joint in my body rebelling in inflammation, heat and a very bothersome throb, throb, throb of nasty pain.
January brought some new determination to me. I was still heart-broken, was still sick and getting sicker, but I was tired of being sad. I could not get out of it, but I had made the decision that I wanted to, no matter how long it took and that was a really good start.
Walking got even worse for me and finally I gave in to the fact that I needed to use a cane to walk. A freaking cane!!! I am only 43!!! What a ridiculous thought!!! I mean, only a bit more than a year ago, I was running 5k three or four times a week. I missed running. I missed walking with ease. The thought of going to the mall was one that I knew just was not a part of my life any more. I had had to figure out ways to shop in outdoor plazas that helped me to find a way to get in and out without the long walks through the mall to get to my destination. Grocery shopping. Now that was a scary thought as I have four kids. Three are teenagers, two of which are boys. I can never have enough food in the fridge and the most important thing to them in my relationship with them is "Hey Mom, What’s for dinner?" It was very hard for me to accept that I had to use a cane. It was hard to accept that I really needed to use the handicapped parking spots. It upset me that if I went grocery shopping, I could barely walk the next day.
On top of all of that, most every day that passed was a bit worse than the last one. I was feeling crappier and crappier. I always felt like I was battling a bad flu. My joints ached, I was terribly stiff in the morning, and my energy was leaving me quicker than I could believe. I was so sad. So sad and still crying, crying and crying. In a three-month period I went through boxes and boxes of Kleenex. My guestimation is approximately ten. Ten boxes of Kleenex to wipe my tears, blow my nose and wipe my face. My nose was constantly red from the endless crying and my eyes were always red-rimmed.
Then there were the kids. As you know, when someone is at first suddenly sick, it is a sad time, but people unify. The kids maybe did not unify, but they did do what they could to help me do some of the simple things on the hard days, accepting that there were days that I had trouble going up and down the stairs, that there were days that I could not go grocery shopping… for several days in a row. That I needed them to come with me, needed them to empty the car of the food, needed them to do not only their own laundry, but mine too. (yes, Victoria does my laundry… even the gentle cycle.) Bless their hearts, they have done what they can.
They tired of it over time, but they came to a realization that I don’t have a choice but to ask them for what I need sometimes, and they don’t really have a choice but to do more to help me. One morning last week, my stiffness was so bad in the morning that I could not get to the washroom and Michael had to come upstairs to lead me there. My hands stayed in balled fists as I figured out how to hold the TP. My elbows were locked into the folded position that I had been sleeping in and my hips screamed as I tried to shuffle my feet forward to get to the washroom. The disease is like Die Hard.. it just keeps worsening month by month, so unless we can get this into remission, it will be a way of life. Pretty sad to think about, but like I said, I have made the decision to try to regain my faith and my hope, and although it is not here yet, it is faithfully whispering in my ear and wooing me back to a better place, where I will be able to manage my fears and my pain, my lonely world and my deforming hands. My cane and my face that has aged ten years in one.
I had a meeting with my VP today and she was pretty much letting me know that the presidents of the company were truly worried about me and want me to know that I have all of their support to not only take the time that I need right now to rest and get well.. but they are encouraging me to do so. I guess going to NOLA was a good thing in a way as they did see the severity of how this disease affects me on a really bad day.. my days are not all as bad as the worst of my days, but they can be very bad and they are frequent enough that it is changing my life. Hugely.
I am faithfully following my medical regime and also I am also on an expensive course of natural supplements that my beloved has continued to send me along with his heart full of love and his care. Along with that God has amazed me with the kindness and care that some have brought to me. There are so many that are in my life reaching out. My dear friends have done so much for me already. Friends from my childhood and from my work, friends from my daughter’s dance school and friend that I didn’t even know I had.
So… the big question that everyone always asks me is when will we all have our Easter we all know and love come back? Well, I have been just a shadow of myself these last several months as I have let myself grieve and get used to the idea of living as I see my life painting the path I must walk. That happy, energetic Easter had to go into hiding as I have struggled tremendously through the horrible depression that sucked the life out of me.. but she is peaking ’round the corner and saying that the sunshine is only a day away. (Please God, make it so!!!)
It is not an easy time for me, but anyone who knows me knows that whether I get better or not, my smile will again shine and my fighting spirit will be back in full force sooner than later. Resilience has always been my specialty and it is being tested to the max right now for whatever character-shaping I guess God has decided that I need. God actually has given me the knowledge to understand that He is seeking thankfulness in all. Even in this black time He wants me to count my blessings and when I do this, I realize how blessed I truly am. My kids, my beloved’s care, my friends that have gone above and beyond, the wonderful support of the senior management of my company. I have had a lot of help even from my ex- in-laws as I have gone through this, bless their hearts.
I will not let this disease, these circumstances change me for the worse… I will rise above it all as I always have… you know that I will.. I know that I will. For the first time in my life, I spent my time losing hope, I did not know until recently what it is to lose hope, but it was gone just like that. I have felt completely naked, exposed and vulnerable without it as I have never had long periods of time that it has vacationed without me.
I am praying that my faith will strengthen and that I will be filled with hope again, but it has been a very long time coming. Apparently hope and despondency don’t share their dance partners. (even those with a cane!) I can now feel that hope is whispering in my ear again and lovingly singing me it’s quiet love song as I said before. Soon enough I will live in it under my rainbow of pretty flowers and happy thoughts no matter what the outcome is. 🙂 Don’t worry.
All who know me will know that… well I have come to know that I don’t call people when I am not doing well. Even harder for me is to ask for help. I have always had a real paralysis when it comes to that. Only very few times in my life could I reach out to others for assistance, but I have had no choice at this point.
A few friends who chastise this character trait in me would be so proud of me.. I actually ask for help every once and a while now. My nails are not done and my toenails are not pretty (for now – THAT will change sooner than later!).. but I am asking for help now and then when I am really, really desperate for it. (that is a huge step for me!)
The best thing that this is doing although I would not have thought that I had a need for this is that I know, I know, I know that I am loved. So many beautiful people that I know have let me see the care and love that they have for me and their genuine concern truly brings me to tears.
My sister Ruth.. she has listened to me more than anyone. God bless her but there was a time that I was going through this over a few months of late fall and early this year that I literally cried… sobbed.. hours and hours per day, day after day. She has listened me cry so much that I had to stop talking. She listened.. she encouraged, she waited and checked on me. She went above and beyond. She brought me over and cared for me.. sad at seeing how much this is making me ill, but still keeping me laughing and smiling every time that I felt yucky. She has the magic cure for my sadness and knows just when to pull it out. Her little Emily has been my saving grace on many very hard days for me just asking me (She calls me Auntie Bella) to sing to her, talk to her, listen to her or tell me a story about her and sissy (her older child Lauren). Emily…. This little 22-month old has a way of making me smile on the WORST of the days. Emily at so young calling me "Auntie Bella", ordering me to sing song after song with her on the speaker phone and telling me that her "toe urt" or that her "eyes bwoken" so that she can get "gwasses". Hearing her sing all of the words perfectly well AND in tune cheers me the way that a warm sunny day with nothing but the ocean and sand in front of me would.
– My beautiful Gerry concerned beyond necessity from the moment that this cursed disease started. He has given a lot of time, a lot of energy and a lot of reaching out to others to learn and discover what this disease really is and to find out what I could do differently. He has spent money that he does not really have to spend in that he is in the midst of buying a house to buy very expensive supplements that are ridiculously too much for me to be able to afford. He closes his eyes every night, praying that I will heal. From connecting me to doctors and Naturopaths, from researching the disease, the drugs and the natural way of healing to his tender heart holding my hand all night long as it was starting to deform.. ever supporting me with his love and friendship.
My dear friend Stef(ano) with his weekly calls or emails to check on me when he knows that I am so down that I won’t even whisper to a mouse.. knowing how depressed I am and making me peek out from under my shell long enough to let him know that I really am ok. Sort of. Stef is someone that does not take "not bad" as an answer to "how are you?". He digs and digs until he knows that he does not need to worry. If he is worried, he keeps connecting. He is one of the few people that really "gets" how I drift into the darkness when I am struggling to keep myself together during the times that are really hard for me. He knows that in this place, I let my thoughts and worries run their course as I am in the darkest of days until they all just find their way into something logical and manageable. Knowing that I can call him day or night with any need at all means the world to me and I have come close to asking for that help and am much comforted in knowing that his steadfast friendship and love has prevailed through the years.
My friend (Saint) Theresa has picked up Victoria time and time again, day after day after day after day going out of her way to relieve me of the stress and exhaustion to and from Victoria’s dance lessons (eleven per week) during this hectic pre-competition season. Not only picking her up, but making sure that she is fed and often keeping her around until homework is done. Picking up milk and other things when I am in a pinch. I know that i know that I know that I wouldnot get the rest that I have so desperately needed these past few months at all if it weren’t for her.
My wonderful sister Christine. Christine, you are my angel of laughter in what has been such a dark time for me ( but won’t be forever!!!) My trip with you to NO was so much better than I could have made it in my dreams. Although I was only well enough to go out once, you got me out twice and you made sure that I experienced Mardi Gras full force and that I saw the beauty of the French Quarter where the partiers were far away! (Bourbon Street once in my lifetime is more than enough to last a lifetime!!!) The way that you nurtured me, made me laugh over and over and over again.. the way that you rolled up your sleeves and pushed me all over NO means more than you will ever know it did. Making sure that I had eaten, coming in to check on me in between your little adventures and drying my tears, you are amazing. (Yes, I was still crying EVERY day in New Orleans!)
The wonderful people that I work for. Gary and Steven, Tisha, Shelley and Tonya have truly gone above and beyond what I could have hoped for or imagined in at first creating a shortened week for me and later encouraging me to take time to rest and assuring me that they will support me and open my position to me with open arms when I am well again. The care in their faces when they saw me sick and how they are making sure that I will be ok when I am off for a while is not them showing me only that I am a valued employee.. but rather, they have let me know that I am person that they truly care for.
The girls at my branch. Now this is another touching story. One day in January, just as this was getting really bad… I had been into the office for a while but left the office after just a couple of hours working. I was very upset that day in realizing how much this was making e so ill and just really realizing how much this disease is changing my life. I had told the girls how hard it is for me to do the daily things that we take for granted and being as emotional as I have been, I left in tears. A few hours later.. two of the girls came to my door with hundreds of dollars worth of groceries. They had all chipped in and bought me TONS of food. I offered the money but they wanted to bless me. I was moved to tears.. They would not even stay for a coffee! Then I saw the card after they left and saw how each of them had written a note of love, encouragement and their hopes that I would get well soon and I was left sobbing on the stairs. What wonderful people to work for and how truly blessed I am.
God was showing me all of things that are blessing even in the blackest days of my life. In my tears, I have been shown the truest, purest love.
Debbie… I call her my angel friend with the spirit of a Scottish Terrier! It is as if she is one of those feisty little pups with a bone in her mouth and a red tartan bow on her head! Debbie’s steadfast friendship and her tenacious nature to make sure that I am ok is a friendship that I treasure deeply. Debbie has always called at just the right time. She always offer another opinion and always put things in perspective for me both emotionally and spiritually. Debbie has the gift of helping me to understand that sometimes as difficult as it is to accept where life is, not only will God shine in the end, but all will be well through faith and prayer.
My wonderful in-laws (ex). Although I am not with their son for six years, they are here for me and my father-in-law, energy power-house that he is, comes, and helps me with the house and the laundry. He gives what he can and more. He is so loving and puts my needs always ahead of my own, even going to the convenience store in the middle of winter by foot so that I don’t have to get out of bed to drive. I would never ever ask this of him nor expect it, but here he is like a faithful friend on many, many days. His wife. She who hurts so much for her son will come and make me my favorite foods and try to help me with the very little that her old and also crippled body can do. What a wonderful expression of love. How can I not bee so very thankful for these giving people?
Jingles & Bella. My beautiful pups. I know. They are dogs and to be quite honest, Bella is Elleni’s dog, but she knows that Bella’s loving nature blesses me and she brings her to me. What a joy they are to me on the days that I feel all alone. Jingles, the snotty, snooty little Jackie-Chi and Bella, the sweet, loving, Kluzy Jacki-Wheaton have lightened my dark days more than I can say.
Last and so very far from least… My kids. Here are the angels that walk behind me on the agonizing four or five minutes that I have to walk down or up the stairs on some days. Here are the angels that understand when I can’t go shopping still even though close to a week has passed since i had known that I need to so that I can have enough food and supply for them. Here are the angels that bring me gingerale, food and other things up the stairs when I have too much trouble walking up and down. They do the laundry (most of the time) and they make sure I am ok (most of the time). They run to the convenience store and even help me get to the washroom and back on the bad days. They make their own lunches and help make dinner. They are tired of this and really I can see that it is not fun for them either, but they help any how. Elleni cries when I cry. Elia hugs and holds me. Michael finds a way to make me laugh. Victoria is skilled at distracting me with questions or landscape or anything her quick little head can think up in a hurry. They move me to tears. They help me remember what it is to laugh and they uphold me on my hardest days. They love me and sometimes all of this is enough to make it through another horrible day bringing a drop of sunshine into my tear-stained days.
I can only thank God. Not because He has told me to, but because blessings surround me breaking through the hurricane of my emotions and lifting me up to a higher place. Nurturing me, caring for me and loving me through all of this. How can I do anything other than thank Him?