LYME STORIES: Karen Densmore (New Hampshire)

Dear Dr. Haller,

As I’ve said before I just feel blessed to have been considered for such an amazing opportunity, and God has already began to use it to answer a specific request from last week, and for that I am grateful…It did give me a chance to reflect on where I’m at & where I want to go from here, and I’m guessing that’s what we would have talked about so I just wanted to share it while I’ve still got it in my head…and I also wanted to write this morning because my husband, Red, is a Pastor and I am going to be at church with him all morning, so just in case you called and I missed you today, that’s the reason why…I’m still not sure if you’ve already made your decision or not, but if I don’t get a chance to talk to you on the phone, at least I was able to share my personal thoughts, goals, & gratitude with you (without having a break-down, ha ha). I wasn’t able to find Dr. Roni’s email on the website so if you could maybe forward it to her for me, that would be great…I really rushed writing this so I hope it makes sense…I just had to distract myself from the suspenseful wait :-) No matter what happens, you’ve surely added some excitement into my life this week, and boy did I need it, ha ha!

First off, I just want to say I’m sorry one more time for letting my emotions take over the last time we talked on the phone…I think I’ve just been on some kind of “illness-auto-pilot” (basically feeling dead-inside) for a few weeks, and just a few days ago as I was wallowing and trying to keep from sinking into the pit, I started asking God to give me some kind of clarity about what to do next…I’m just in pain all the time (bone pain throughout my extremities), my gut feels like it’s rotting away, I’m constipated, and I’ve reluctantly been isolating myself (because who wants to be around such misery? Not me, but I don’t have a choice). Then that same day I got the call from David Hunter (who I’ve only spoken on the phone with once 5 years ago to inquire about the Lyme Support Group, so I knew it must be important)…then after contacting you & getting more info, when I wrote you the email and attached my testimony from the Lyme Bill Hearing in 2011, then I ended up going through my many notebooks filled up with all of my medical and Tick born illness-related stuff for hours, and I guess I didn’t realize it then, but it was like re-living the last 5 painful years all over again… then a little while later when you called & said you were moved by what I shared & that it was now down to just 2 people, it somehow felt like God was letting me know He wasn’t done with me yet, and a wide-range of emotions just came spewing out all at once, the floodgates were opened and I just couldn’t stop crying…I hadn’t cried in a while, so although it felt good afterwards, the timing couldn’t have been worse :-/ but thanks again for your understanding & helping me make light of it J.

Dear Dr. Roni,

I just wanted to let you know that I read your story on the website and it really touched me (an yes, I cried of course J I guess maybe it’s just another one of the many wonders of chronic Lyme…because I used to be able to control my emotions, but now I’m a fragile crybaby that can cry if the wind blows! Ha ha…guess I gotta laugh to keep from crying now :-)…but truthfully I related to so much in it –the part that comes to my mind is the episode you had when you were driving to your daughter’s school. It reminded me of the final straw that made my husband have to start driving me to work every day (he drove me every day for the last 5 months that I worked back in 2010). I was on my way home (still light out) and I was only a couple of miles from our house, and all of a sudden I had no idea where I was and pulled over. I thought maybe I was having a panic attack because I had experienced them as a teen & early 20’s, but I wasn’t panicking, my heart wasn’t racing –I just really did not know where I was…so I grabbed my phone to call someone and I had no clue what buttons to press or how to even get my husband’s number up to call him. I literally just had to sit there for maybe 5 minutes until my mind “came back” from wherever it went…I was also having what I called mini seizures where my eyes would feel like they were trying to roll up in my head and they would flutter, and it felt like a jolt of electricity in my head, that would only last for a few seconds…but between that and severe debilitating fatigue, and a doctor’s note, I stopped driving (just FYI, I drive short distances now as long as I’m alright).

I LOVE how your detox program came together so organically. You weren’t even making it to sell –you were just trying to heal yourself and there’s nothing more tried & true than your very own process of trial & error…you were like your own guinea pig, so you can’t trust anything better than that! Lastly, I’m a woman of strong faith –it’s what’s gotten me through the toughest times of this illness, so your focus on total, overall health –mental & spiritual, as well as physical is the final reason why I’m getting your books and doing this detox, whether you all chose me or not. I don’t know why I didn’t think of doing a detox cleanse sooner, but I’m just glad God crossed my path with yours for such a time as this in my life. I believe His timing is perfect and I’m glad He used your business to reach out to me in my time of need.

I am finally grasping & coming to grips with the fact that this illness, when chronic, is certainly a marathon, not a sprint. Everyone at the support group warned me in the beginning, but until you actually live through it yourself, you cannot believe the amount of strength & patience it takes just to get through some days…but all the while, looking as healthy as you always have on the outside, yet you’re now a tiny fraction of the person you were before you got sick…like an empty shell…so people either look upon you with pity or like they’re questioning whether you are really sick or not…both are bad). It is so important for people to be encouraged by others in the same boat and to reach out in these times. It’s unfortunately understandable to me now why people have committed suicide because they cannot go on anymore in such a hellish existence, and surely there have also been many who were misdiagnosed, wrongly medicated, and deeply ill from tick borne illnesses, but never knew, never got to talk to someone who understood what they are going through, & now they’re gone. I cannot imagine being young and having this pain & illness happen to me. When I truly think about it, I can honestly say that I don’t know if I’d be alive if this had happened to me in my teens or 20’s, and just thinking about that motivates me more than anything to want to get well enough so that I might be a beacon of light to others the way that certain LD Advocates were to me in my darkest times. I know of no other illness that attacks every part of a human life like this one does. From deep, chronic bone pain, to colon paralysis, to not remembering the name of someone you’ve known for 10 years…and then being labeled hypochondriac or psychosomatic by multiple doctors, given antidepressants, and told that they didn’t know much about Lyme disease treatment, but to watch out for any “quack” doctors who will prescribe antibiotics for more than 2 weeks…All I can say is thank God for doctors like you both, who’ve do the research yourselves and continue to stay up on current studies & new therapies, and who are truly helping, supporting, and educating your patients so that they can then do the same for others. I know I’ve personally learned more and gotten more help from my LD Support Group Leader than 18 different doctors & specialist put together. The LD Support Group was & still is such a light in my life. I remember the first night that Red & I went after I got my diagnosis. Up until then I had felt so alone, but as we sat & listened to story after story, each sounding more like my own, then came my turn to share, & I continued to be comforted by all of the smiling, nodding heads, and I finally felt validated by peers who understood and confirmed that the pain & suffering I had been in for the last 2 years was indeed real… I believe the people in that room helped me to take the first step toward healing that night and it continues to be a big part of my treatment each month when I’m well enough to go. I really commend you doctors for doing what you do every day for the Lyme community, despite the controversy & complexity of everything under the tick borne illness umbrella.

I believe one of the biggest parts of my own healing will come through helping & encouraging others who are going through it too. Just talking to someone who’s been there and understands is so important. Knowing you’re not alone in your pain & sickness is key to moving forward, especially in the beginning … getting & staying well is my #1 priority so that I can start giving myself to helping others, like the people I admire the most do…I know I’m no good to anybody when I’m as sick I’ve been lately. It’s like when you need oxygen on an airplane – you need to put your own mask on before you can help the person next to you get theirs on.

I always wish I could do more, especially through times like these when I can barely take care of myself. I’m always saying my spirit is willing but my flesh is too weak. One thing that’s happened through all this is it’s slowed me down enough to really be able to appreciate the things in life that matter most. Like a lot of people, I think I was so busy all the time that I never stopped long enough to take in what really matters, even in the littlest things. It took me a long time to even learn to say no –I nearly killed myself trying to keep going at the same pace when I got sick, and it took a long time to learn just how to be still –especially when all I wanted to do was distract from the pain. I always had such a type A personality, doing 100 things at once, which made facing chronic illness even more difficult –I’m sure I’m still sometimes in denial that I can no longer do certain things (or I at least set unrealistic goals for myself). I always used to have an attitude of “suck it up”, “push through the pain,” but I didn’t grasp how truly difficult that was for some people, until I found my own self unable to do anymore… Although I always loved my job, and had a special love and compassion for people with disabilities, I don’t think I grasped then just how great a gift it was to work with them and witness their strength & positive attitude every day until I became disabled myself. Day in and day out, year after year, I’ve come to realize what some people go through just to stay alive and how much people can actually get through when they have others in their life who care and understand. I never fully realized how long just a little word of encouragement can take you when you’re down. Living with chronic pain and illness has given me a whole new kind of appreciation for people who live with disabilities and chronic “anything” and still get up every day with a “Carpe Diem” attitude. Those people are my heroes and although I don’t supervise them anymore I still let them know how much they mean to me, and that their strength continues to help get me through my struggles even now, these years later.

I met a woman who was very sick from Lyme for many years, but had recovered, and even though it was many years ago she still couldn’t even talk about it now because it was too painful. She said it consumed her life so much that she lost her identity and just became “the girl with Lyme Disease” and I could feel her pain –there always seems to be an unspoken, but special connection between Lyme patients, even when they’re strangers to us, you know when they’re no stranger to this unique & hellish experience that changes you forever…I understood & respected her decision to not talk about it but I was also sad for her because I truly believe that in order to fully heal deep inside, you have to give back somehow –it doesn’t take much. A little really does go a long way, and it’s so worth it when you see the light go on in someone’s eyes when they go to a Lyme Support Group, and although it’s just the beginning of their long journey, all their suffering is finally validated, and they know they’re no longer alone and can begin to heal. It takes me back to my own first support group every time…I would say there are anywhere from 25 to over 50 people that come to the support group every month, and the faces are always different but their stories are the same –so many sick & confused people who have exhausted the medical system, they’re looking for answers –many with children who aren’t able to go to school anymore…and like my family & I did, they are finding out that their hope is not in the big mainstream medical buildings, but in the grassroots movement filled with people like you two and David Hunter, that are thankfully there with open arms, answers, and always have hope for healing …

I could never put my head back under the sand after knowing all that I know about these diseases and what they do, and I could never live with myself if I didn’t try to help in some way. Lyme Disease certainly doesn’t define me, but despite what’s been lost, this experience is helping me to grow into the advocate I hope to become. I know I could never have gained the compassion & fervor I have to help others now any other way…I know it’s a cliché, but it’s true that it’s not what happens to you in life that defines who you are, but it’s what you do about what happens to you in life that defines who you are…I owe it to God, my family, myself, and all the people along the way who’ve helped me, not just to get through, but to stay alive through the past 5 years. There were times I didn’t think I could come back from –the human body is totally amazing and I truly believe it can heal itself, so I look forward to taking this step of cleansing and giving my body the best chance for optimal health.

Thank you for taking the time to read all of this…although I’m quite foggy and didn’t have time to really think about all I’ve just said, I just hope my heart came across and that it’s clear that I’m the kind of person who can’t help but to share a good thing, so no matter what your decision –I look forward to doing the detox, giving you my feedback, and sharing my results with the Lyme Community here in New Hampshire and beyond J
May God bless & continue to use you both powerfully to heal people everywhere!

Karen Densmore

Category: Detox, Dr Enid Haller, Lyme Diet, Lyme Stories · Tags:

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