Life On Hold

For me, one of the most difficult aspects of living with Chronic Lyme Disease is living a life on hold. I have been chronically ill for years, but as discussed in earlier posts, I was refusing to listen to my body. I was over-working and over-committing myself--to the detriment of my body--yet still not living a 'normal' life.

I spend most of my days the exact same way: in bed, going to the doctor, or having treatments done; setting up to 6 alarms during the day for taking different medications at different times. To my frustration, I am usually in too much pain or have too much brain fog to function enough to do anything productive. When I gather up enough energy I am able to write. This blog has given me a sense of purpose with the hope that I am helping others who are in the same situation, feeling lost in the darkness that is Chronic Lyme Disease and the battle to treat and fight it. After writing each post I am left both physically and emotionally drained, but since I began this blog the overwhelming flow of love and support I have received and the hope of helping others makes it worth it all.

I am able on my good days to get out of bed, do yoga, go on (extremely) short walks, and spend more time self-healing. When I am stuck in bed, I am still able to do my detoxing regimens..even if I have to force myself to do so. Ironically during a herx (caused by too many toxins built up in your body), the last thing you feel like doing is detoxing. I will save more for a post on the importance of detoxing during treatment--it is literally a matter of life or death, but back to living a life on hold.

One of the more frustrating aspects of fighting this disease is losing your former self; your identity. I previously (incorrectly) identified myself by my accomplishments and my activities. If you have read my blog before, you know that I was working a minimum of 60 hours a week and served on several charitable boards. I also loved working out, going hiking, climbing, being in nature, playing tennis, etc. The way that I previously identified myself became a major source of anxiety and guilt once my body said, "no more." Using my former standard, I am worthless...unable to help myself in many situations, not being very productive or accomplishing anything. This is why I learned, through pain management counseling, to redefine how I judge my self-worth.

I try not to judge myself, although this is a difficult task. I am working to find peace with my body as it is and not judge my health--to recognize it, or the lack thereof, accept it, and move on and only focus on fighting this disease. I will also touch more on this subject on a post about guilt, which is another ugly monster that rares its head while you are undergoing treatment for Lyme. More on that later.

So here I am. Stuck in bed. Unable to concentrate enough to read or watch anything on television that requires any brain cells (hello my new obsession with The Real Housewives and other non-thought inducing television shows). I lay in bed, fighting this internal battle within my body, but externally doing nothing; accomplishing nothing. I see (rather, hear) my friends getting promotions, exciting new jobs, getting engaged, getting married, and having children--living their lives the way God intended us to.

I am almost 27 years old (give it a week). This should be a very exciting time in my life, but I have lost my 20's to this disease. I have an amazing boyfriend and would probably already be married if I were not so ill. My boyfriend and I have discussed the topic at length and have come to the decision that it is unfair to both of us to start a marriage with me being unable to care for myself. He is more often my nurse than he is my boyfriend, although he tells me it is one in the same.

My little sister just got engaged and I have already started to hear the "it will happen to you, too...one day" condolences. Like I'm really sitting on the edge of my seat (bed), waiting to be whisked away so that I can stumble down the aisle (if you have Lyme, you know the impossibility of being able to walk in a straight line, if at all in some cases). Can you sense my sarcasm?

I want to enter my marriage with my health, something that doctors tell me that within a year and a half I will have 80% back. This is a true blessing--as horrible as this lifetime journey has been, there are many who have it much worse. Many Lymies are completely debilitated--they have hospital beds instead of a real bed, they have to have a nurse bathe them in their own home (if they are not in the hospital), and they are bound to their wheelchair. Many do not survive this disease; it has taken so many lives. I am one of the lucky ones and am blessed to have arguably the best Chronic Lyme Specialist in the country. And I look forward to the day when I have my health back after all of these long years.

Until then, I sit and watch as life passes me by. Missing out on so many experiences--being forgotten about by so many former friends. Watching as former best friends get married and not being asked to be in the wedding. (Technically I was asked once, but the topic was not mentioned again once my friend realized how sick I was. I sat and watched as she and her bridesmaids walked down the aisle.) This all has been a big blow to my ego and has caused my heart to break.

I apologize that this particular post is not an uplifting one. I will write later about the scientifically studied "normal" reactions people have to a friend who has a disease that they cannot see or do not understand. It helps me to make sense of my loss of peers and their reactions to me being sick, but this post is about what I have lost.

I have lost my favorite hobbies, all of which included being physically active. I have lost what makes me feel most alive--going to events, being with friends, raising money for charity, and most importantly being active and in nature. So many friendships that have disappeared have given the lyrics from "Find Out Who Your Friends Are" new meaning for me.

Lyme has stolen so much from me and from others who suffer from this horrible disease and its co-infections. It has taken away from me so much of what I once loved. Again, I apologize for the lack of positivity in this post, but my decision to be brutally honest on here has outweighed my desire to always come across as positive and strong. Lyme has taken too much from me, even parts of my sanity, and I am fighting every hour of every day to get back as much as I can.

Guest Blog: A lifelong battle with JRA & Lyme

I would like to welcome my first guest blogger and someone very dear to me, my sister Julia. She is one of the toughest fighters I know...so strong and so beautiful that it is hard to believe that she is sick. Without further adieu, here is Julia... 

I have been very hesitant to write a post for Sarah's blog. It has been a hard choice for me because I don't want to seem like I'm whining or wanting people to feel sorry for me. Especially since I am in nursing school and see people everyday that are so much sicker than I am so I realize in a lot of ways I am very fortunate.

Julia Israel, Lyme warrior and Juvenile Rheumatoid Arthritis Spokesperson

I'll start out with my story from the beginning. I was diagnosed with Juvenile Rheumatoid Arthritis at 2.5 years old. My parents had noticed that my finger was swollen but they just assumed I'd had a normal toddler accident. However, one day my dad was tossing me up in the air and when he caught me I started screaming. My parents of course were concerned I'd broken a bone or pulled something out of place, but I explained to them that Daddy straightened the arm that's "not supposed to straighten".  Then they realized that I was holding my arm at a 90 degree angle up against my chest/stomach all the time. After several weeks of testing, my parents were told I had Juvenile Rheumatoid Arthritis (JRA). I grew up trying a wide variety of treatments; there were no pediatric rheumatologists in the state of Alabama and the medicines weren't as good as they are now so we tried everything that was out there. 

My doctor told me there was nothing they could do for my arm- that it would always be bent at a right angle and that I should go ahead and learn to use my left hand- which I did, which always tricked up pitchers in 2-3rd grade softball ;). I wore a metal brace for half of the day and also when I slept in hopes that it would keep my arm from retracting further. My parents, being the incredible people they are, decided that they were not going to give up. I went to a physical therapist who I hated because she "hurt" me to help me, but she was incredibly effective and changed my life. 

With Angie, we would do strengthening and stretching exercises for my arm, then, with several assistants, pull my arm as straight as she could and then cast it as quickly as possible. We would go back several weeks later, remove the old cast, straighten the arm a little more, and recast it. This was very painful but worked so well that my arm was nearly completely straight after a few months. However, one day in church my arm completely retracted back into the 90 degree angle and we had to start all over. However, after this time it worked! It was amazing and allowed me to live a much more normal life. During my elementary school years, I also developed a form of arthritis in the eye called iritis, which can lead to blindness if untreated, but I had no long term effects after treatment with steroids.

At some point during all of this, more joints became involved including my knees, ankle, jaw, hip, and shoulder. My knee was swelling to such an extreme degree that in 7th grade, the doctor removed some synovial tissue and cleared out some cartilage in an effort to keep me from coming to the office every couple of weeks to get it drained. This period of my life was an incredibly difficult one. I was in constant, excruciating pain but didn't want to say anything because I didn't want to seem whiny or be seen as "different". 

I was so sick and anemic that I looked like a ghost. We found an old picture of me on a skiing trip from 7th grade and my face is honestly only about one shade darker than the snow behind me. My parents would have to wake me up before my sisters in order for me to get stretched out enough (especially my legs) that I was able to leave bed. I wore leg braces that kept my leg straight while I slept, but it was so painful I'd always take them off in the night and wake up with knees I couldn't straighten past 90-100 degrees. 

Even with this, I continued playing sports the best I could. In 7th grade basketball I would often come in just to shoot some threes at the end of the quarter or half, but one game I remember making several shots in a row and the opposing coach yelling, "how can you not guard her?? I can run backwards faster than she can run!" It really hurt my feelings at the time because I was very self-conscious of my obvious limp, but I tried to think of it as a compliment. 

However, feeling so alone left me in a very dark place and I became very depressed. Feeling alone and misunderstood are two powerfully painful feelings and unfortunately, my parents didn't realize the high incidence of depression among people, especially adolescents, with chronic diseases, so I suffered for a long time before my parents realized what a dark place I was in and got me professional help.

In high school I really felt a lot better than I did in junior high. We had a new pediatric rheumatologist at Children's in Birmingham, and she put me on Vioxx, methotrexate, and Enbrel, a shot I gave myself 2 times per week for 10 or 11 years. I still felt nearly constant pain, but I didn't have so much swelling and was able to participate in sports like I wanted. 

I began working on a campaign with the Arthritis Foundation of Alabama to raise funds to bring a pediatric rheumatologist to the state of Alabama (my 7th grade doctor left after 2 years or so). Along with two other children who had much more severe arthritis than I, we made a video to raise awareness that "Kids Get Arthritis, Too!" and to raise money for an endowment to hire some pediatric rheumatologists. I spoke at various events (oh how i hate public speaking!) However, after all our hard work we raised several million dollars, hired 2 pediatric rheumatologists, and built a state of the art facility, one of the bests in the nation. This is truly my proudest accomplishment to date.

Once I started college though, things went downhill again. I started  flaring, my knees became hugely swollen again, once so bad my 5'3" sister and 5'2" mother had to carry me up two flights of stairs to my dorm and then I had to depend on my roommate to help me get dressed. I started seeing a new rheumatologist who I really liked and respected and he changed up my treatment regimen to once a month infusions, in addition to the meloxicam, plaquenil, and the maximum dosage of methotrexate that I had been on for 10 years. 

He continued draining my knee and injecting it with steroids, but every couple of months I was back with the same problem. I also started having jaw problems and had to get my TMJ joint injected with steroids (not pleasant). Finally, one day I came in to the rheumatologist and had so much inflammation spread all throughout my body, my doctor decided to run an infusion of steroids with my infusion for my JRA. I got home and literally didn't leave the bed or eat for 3 days.

After this last incident, my parents and I decided we had to try something else. My sister had been diagnosed with chronic Lyme disease and the doctor was interested in seeing me since he had successfully treated and cured several patients diagnosed with JRA. My rheumatologist thought I was insane, but I had one more infusion left to try before I was out of options with JRA meds, so we figured why not give this Lyme doctor a shot. 

I went and saw him, stopped taking all of my arthritis medications, and the swelling in my joints went away! It has almost been a full year that I have been off my arthritis medicines and I have had minimal swelling- avoiding draining my joints and avoiding damaging steroid injections.  The doctor also told me NO steroids! The steroids actually cause the Lyme spirochetes to go into overdrive- hence why I got so sick after steroid infusions. 

It sounds really strange to most people, but I was thrilled to have Lyme disease. JRA is a life-long condition that you can only try to improve symptoms, but there's not a cure. With Lyme disease, even though its a long road and some people never get 100% better, I am just so happy to be able to get better at all. I was telling my dad the other day that even if I only got 25% better than I've been my whole life I'd be thrilled!

I'm nearing a year of treatment coming up this fall and still have several years to go. It has been a really, really hard road and besides the lack of intense inflammation, I actually feel worse than I did while on JRA treatments. The doctor told me this is to be expected because the Lyme bacteria and co-existing infections fight back when they are attacked with antibiotics.

I think where I am again, where I keep finding myself, is in a very low place because I feel alone, isolated, and like no one understands me. I am in an accelerated degree masters nursing program and every single day is such a struggle for me. However, I don't want to complain or be a "Debbie downer" so I always try to keep a smile on my face and pretend everything is okay. I think this is part of my problem with feeling like my friends don't understand me- I usually don't look sick or act sick, but it's really just because I'm trying to hide it and power through, just like I always have. 

Pictured here with her wonderful fiance, Julia looks more super-model than super-sick, which is why so many have no clue how torturous this disease has been to her during the span of her entire life. -Sarah

I never wanted arthritis to stop me and I'm not going to let Lyme stop me. I just pray for more understanding from my peers. It is hard for people that are healthy to understand though. Often I can sleep anywhere from 14-20 hours without waking up and then require a nap later. I sometimes take hot baths 3 times a day in an effort to curb my pain. I keep pain pills with me to get through the days. I sit in the dark for hours because I suddenly get the worst migraines. It really is a lonely disease, as I believe most chronic diseases are. I feel like I've missed out on so many experiences and friendships because of my life-long struggle with JRA and Lyme disease. There was a whole year in college when I hardly left the bed except to go to class occasionally and I feel like a lost a lot of great friends and experiences I could have had. 

Because I don't really share much about how I'm really feeling, I sometimes feel like I'm right back in junior high again, completely misunderstood in how much I am really struggling because of these diseases. I don't want people to feel sorry for me, I want people to realize the situation I'm in and just care and show compassion more than anything else.

Luckily, I have an amazing fiancé that helps support me, especially through this spring which was the worst I've felt in my entire life. He cooked, he cleaned my apartment, he looked after our dog, he went grocery shopping, etc. He has been truly amazing and has made it possible for me to make it through one year of this degree and has kept me laughing, even when I feel my worst. 

I just want to share my story to spread awareness and also to help the friends and families of a person with chronic Lyme disease. Know this is an incredibly lonely, dark disease and that your friend/family member with the disease needs your support and company at times too; make that phone call or text, invite them to do something, offer to bring a meal when they can't get out of bed, simply let them know you're thinking of them! That always does me wonders- even if I want to be alone all day, just knowing someone is thinking about me and caring for me is a huge booster.

As I start a new school year, I am extremely anxious about how my body will handle it, as my body completely rebelled against the insane hours of the nursing program when I got costochondritis, constant upper airway and throat infections, and stomach bugs. I am really terrified about starting school again, but I am going to continue fighting as hard as I possibly can. I'll need all the prayers I can get.

Finally, another huge worry I have that feels like a constant burden is that until I get better, I can't be the fiancé/wife to Cory I want to be and I can't be the super mom I want to be one day. Cory helps me so much and is so amazing to me and I just want to give back to him all he has given me.

I want to close this post by saying I know how incredibly fortunate I am. I've had parents that never gave up on getting me better, parents that never let me quit or believe I couldn't do something because of my JRA, two totally compassionate sisters willing to do anything to make me feel better, and a fiancé that I love beyond belief who has been so patient with me through the pain, the tears, the mood swings, the fatigue. I have been so, so blessed in so many ways, and I cannot wait to truly take on this world once I am better.

Good Day=Bad Thing?

If you are undergoing treatment for Lyme you know what I'm talking about when I refer to "good day(s)" (sometimes just hours). When you begin treatment for Lyme, you immediately feel worse than you did pre-treatment. And when I say worse, the word torturous comes to mind. But then, every once in a while, you will experience a high more intense than anything you have ever experienced: a good day.

A good day means freedom. You feel unshackled for a small space of time, as if God is giving you a 'time out' (I'm saying that in sports terms, not in parenting terms). You still feel sick, have no energy, and are not your old self. However, you feel so much better that you can actually breathe and feel your muscles relax. You can actually enjoy what you are doing..even the most mundane activities are suddenly fun.

My laughter woke me up yesterday morning. I woke up still smiling and trying to remember if I had a particularly humerus dream. And then it hit me: I felt free. I was laughing because my subconscious had realized that my body and spirit where given a break from battle while I was sleeping. Sometimes this break will only last a few hours, so I use to try and cram as much as I could into the time that I felt good. This is not a good idea--it causes you to crash and then feel worse than you did before your good day.

I have learned to relish these good days and see them as blessings. However, this is a hard lesson to learn.

Good days used to be my curse. I would feel great one day and the next would feel horrible again. It was like someone was teasing me, temporarily releasing me only to shackle me once more...torturing me by changing what was 'normal' for me. I was accustomed to feeling horrible each day, so it was not terribly depressing when I woke up feeling horrible. But giving me a break from the anxiety and pain then quickly taking that freedom away made everything seem so dark. The days after my good day were always the times I was most depressed and withdrawn, feeling cheated and sorry for myself. The good days give you something to compare your normal (bad days) to. It unfortunately makes you realize how sick you really are.

Now good days have become a blessing after altering my way of looking at the situation; a little reconditioning of my thought process. This morning I woke up feeling bad again, but instead of it making me depressed, I was joyful still from yesterday.

So to answer the question, "Can a good day be a bad thing?"...Yes, if you let it be. But by changing your mindset and accepting the good day as a blessing of temporary freedom, a good day will only be a good thing. Now I let my good days be inspirations to keep fighting. They serve as reminders of how amazing it will feel to get my health back, so I enter the bad day ready to battle the spirochetes and parasites in order to regain my health as soon as possible.

Good days are God's gift of hope to us: a brief glimpse of what our future will look like. Good days keep us fighting and knowing that healing is occurring in our bodies.

Lyme in Alabama

It seems as if at least once a week I hear of someone who is suffering and their doctor told them "there is no Lyme Disease in Alabama."

This is an absolutely false statement. I am proof that Lyme exists in Alabama. My family is proof--my father, my sister. If you would like more proof, click on the Alabama Lyme Disease's facebook page here.

If you are sick and your doctor tells you there is no such thing as Lyme disease in Alabama, find another doctor immediately. Lyme is in Alabama, infecting dogs, horses, humans and more. You must be proactive and keep searching until you find an answer.

Sorry for the short post...I just want everyone who reads this to know that there is Lyme in Alabama.