2. I was diagnosed with it in the year: 2009. Though I’ve been sick with the disease at least 20 years, it wasn’t until a series of 5 steriod injections in my back in 2008-2009 for back pain that the disease was fed by the steroids to the point I became so ill in 2009 I became bed ridden and unable to work.
3. But I had symptoms since: 2003, though there are “markers” in my medical history as far back as 5 years old that could indicate a Lyme infections. The list of things I had wrong with me is below.
Irritable bladder system (was told nothing was wrong with the plumbing, I just had a weak bladder and would have to live with it)
Kidney/Gall stones, in and out of ER’s and Dr’s for what they believed to be passing stones, only no stones were ever found. Final decision was “maybe you already passed it and there is no sign of it having been there”. The pain neve went away, but no Dr could ever find out what caused the pain.
Depression/Anxiety: I’ve been treated on and off for years for both, usually without being able to find any reason for the triggering of these symptons.
Allergies/Sinuses: About 10 years ago my allergies took a life of their own. Each year progressing, until 2 years ago I began with constant sinus/ear infections with brutal allergies. I was told there ws nothing that could really be done, it was just allergies. I went from taking 5-7 medicines a day for allergy symptons to none since being treated for Lyme disease and seeing a Nutritionist for nutrition response therapy.
Fibromyalgia: Over the past 10 years or so I’ve developed Fibromyalgia symptons. At first I was told by 2 Dr’s that was not a real condition, and that men did not get it. AFter diagnosis I found a Dr who tested me for it and it was positive. Fibromyalgia is one of many diseases caused by Lyme disease.
In 2003 I went to a cardioloist for heart problems. My heart raced, I had chest pains, and could feel it skipping beats. After wearing a monitor for a while they said my heart was exceptionally healthy, just threw in extra beats. After being diagnosed I have been in the ER with heart attack symptons, where I was told Lyme meningitis had settled in my chest, my heart was very healthy but the Lyme is making it beat weird and causing palpitations.
In 2010 I am seeing a cardiologist again because of the same type of issues and irregular heart beat. They are checking everything out again to make sure there is no damage to the heart from the Lyme disease.
I injured my back in an accident in 1997. Since then I have had symptoms on and off until a year ago the pain got unbearable. I began a series of specialists who called my case an “onion”, peeling layer after layer until they found what was wrong. After 5 steroid injections in my back (the last in April of 2009) the Lyme disease is believed to have actually activated, due to the steroids in my spinal fluid. 2 weeks after my last injection I lost vision in one eye, and that began the journey of being diagnosed with Lyme. (Please note, since being on Lyme treatment my back pain has almost diminished.)
I have strange rashes on my upper body that have been there for 6 years.
4. The biggest adjustment I’ve had to make is: At this point it is giving up my home and having to move in with my mother to afford the treatment I need. I’ve been out of work over a year, and am facing having to go on disability. That is a big adjustment. Beyond that I’ve spent the better part of the last year in bed. That affects your life drastically. From the things I am no longer able to do, to all the things I’ve missed out in the last year. That is an adjustment to face that on a daily basis.
5. Many people assume: That if I have a good day I’m getting better. It doesn’t work that way. I have good days, I have bad days…it’s part of the disease as well as the treatment. While treatment as a whole is making me feel better, people expect you to suddenly be up and doing an irish jig just because you have one good day. They then seem confused and disappointed the next day when you’re back in bed.
6.The hardest part about mornings are: Waking up and realizing it’s real, and not just a bad dream
7. My favorite medical TV show is: Scrubs…will always be Scrubs!!!
Two important things: My iPhone and my pride.
8. A gadget I couldn’t live without is: My laptop. It’s my link to the world when I don’t leave my bed. Social networking saves the lives of those of us who can’t get out into the real world.
9. The hardest part about nights are: Right now I have no complaints about nights, I seem to have overcome the whole Lyme insmonia problem thanks to the Ondamed treatment (google it). So for right now, I love nights, I sleep well and I get a full 10 hours of sleep every night.
10. Each day I take: 39 pills. This does not include pain relievers, pain killers, sedatives, anything “as needed”.
11. Regarding alternative treatments: (no change to this answer) I believe in them whole heartedly. But as a compliment to traditional medicine. We need them both. Any person who has told me to rely just on alternative medicines, I’ve walked away from. I need science just as much as anything else now. I’m lucky to have an specialist who is open to those treatments and works in conjuction with my alternative treatments.
12. If I had to choose between an invisible illness or visible I would choose: At this point I would choose anything BUT Lyme disease. Really…there aren’t many diseases I wouldnt’ choose over this right now.
13. Regarding working and career: Finally accepting the fact I may not ever make it back to work. But I’m not someone who could be happy living on disability (or with my mom forever). So in a way it’s kind of liberating also, because I have the opportunity in my mid to late 30′s (ugh, that’s so painful) to possibly start over with a whole new career. One that will foster to the needs I will have as I learn to manage this disease for life. It will never go away. I will get better, but it will always be lurking in the background (which oddly enough is exactly how I feel about Mariah Carey’s career).
14. People would be surprised to know: I cry every day. Literally ever day. And most days that’s a good thing.
15. The hardest thing to accept about my new reality has been: Giving up my independence…and the grey hair. This disease is going to age me a good 20 years. Pre-Lyme I got carded to see a rated R movie…now they call me Sir.
16. Something I never thought I could do with my illness that I did was: Get involved, and make a difference. I know for a fact that I saved lives during the month of May because I refused to shut up about Lyme disease. That is power.
17. The commercials about my illness: When I originally answered this I said there were none. But now there are, thanks to all the hard work of the Paint May Lyme Green campaign, and Ashley and her brother for all their hard work. Check them out: http://youtube.com/lymenaide. The press kits for the TV Public Service Announcements are currently in the mail so look forward to seeing them on your local TV stations soon!
18. Something I really miss doing since I was diagnosed is: (I cry when I read my answer in September, then I thank God I can write again). write. The brain fog makes it so hard to get anything down on paper. I also miss driving without anxiety. – My new answer is I miss having my own place. It really takes a piece of you away when you give up something like that. No matter how comfortable you may be where you end up.
19. It was really hard to have to give up: Sugar. I’m actually looking for a Sugaraholic Anonymous meeting. Unfortunately with Lyme I’m too weak to take 12 steps (please tell me someone got that joke).
20. A new hobby I have taken up since my diagnosis is: Education. There’s got to be a way for me to keep someone else from going through this hell. (this answer hasn’t changed)
21. If I could have one day of feeling normal again I would: Dance, Party, spend day in shorts and sandals laughing and living it up with all of my loved ones. Every single one. I would have the biggest party with every one of my friends and loved ones, even the ones I only barely like.
Outside the Doctor’s Office
22. My illness has taught me: We have to be our own health advocates. Dr’s may kill us while trying to help us, it’s not their fault if they aren’t educated. So you have to help advocate for what you need for your health. And with Lyme, we have to educate our Dr’s to help someone else.
23. Want to know a secret? As absolutely freaking awful this disease has been…I wouldn’t trade it for the world. It has changed my life. In a lot of bad ways yes, but in more good ways. I feel closer to my friends and family, I appreciate the little things (like getting out of bed), and my life will never be the same for it. Now that the first year of hell is over, I can say this. But the new “family” of Lymies I have come to love as my own family I wouldn’t trade in the world, nor would I trade the life lessons given me from this awful disease.
24. But I love it when people: Buy me things. Some things will never change.
25. My favourite motto, scripture, quote that gets me through tough times is: “Ladies and Gentlement, take my advice. Pull down your pants and slide on the ice”. My best friend Gabby’s senior quote. I am a huge advocate of anything that includes taking your pants off. (Like jumping in a like, nothing dirty).
Currently listening to: Eminem. Our lives have become almost parallel I feel. That and his music is really full of hope (in between prescription pill addiction and dirty words)
26. When someone is diagnosed I’d like to tell them: Take a deep breath, and never refuse pain killers
27. Something that has surprised me about living with an illness is: How much I feel like an 87 year old woman (bladder included) on a daily basis. The other thing I’ve learned is there’s not much I can’t do.
28. The nicest thing someone did for me when I wasn’t feeling well was: tell me I look terrible. Thank you for validating how I feel on the inside.
29. I’m involved with Invisible Illness Week because: Because now I AM involved. Lyme disease took my life from me, and I’m really pissed off because of that. And I’m so angry, I am coming out swinging and fighting. I will NOT allow another generation of people to get this sick when they don’t have to be.
30. The fact that you read this list makes me feel: You probably don’t have Lyme, because the list is probably too long for any Lymies’ attention span!