Life With Lyme - Latest Comments

Re: You Must Be Crazy

Darcia Helle — Sun, 03 Feb 2013 11:15:02 -0000

Congratulations on 7 cancer free years, Heather! You story is such a huge inspiration.
I love your Lungleaving Day celebration. I wish I could have participated in spreading the word. My Internet time is severely limited these past few weeks due to problems with my neck and shoulder muscles. I will pop over to the article and tweet it for you. I wish you all the best!

Re: You Must Be Crazy

Heather — Wed, 30 Jan 2013 12:20:49 -0000

Hi Darcia!

I came across your blog and really love how thoughtful and inspirational your posts are. I am 44 and a mother to a quirky little 7 year old, Lily. She is my only child and I couldn't imagine my world without her. When Lily was just 3 ½ months old, I was diagnosed with Mesothelioma; a rare type of cancer caused by asbestos exposure, which kills 90-95% of those who have it. After intense treatment and a long recovery, almost 7 years later I'm still here and cancer free! My journey through cancer was quite a terrifying one and I'd like to turn my struggles and obstacles into inspiration and hope for others. One of many things that came out of my battle with cancer is a holiday I created called Lungleavin Day. This is the anniversary of my surgery (Feb 2nd) in which my entire left lung was removed. Lungleavin Day is a celebration of life and facing your fears. Each year we celebrate with nearly 100 loved ones. The idea of this day is for everyone to fill a blank plate with their fears and smash it into a bonfire at my Lungleavin day party, symbolizing people throwing their fears to the fire. I also use Lungleavin day as a fundraiser for mesothelioma research.

I am contacting you because I feel that your blog would be an excellent place to help get the word out about Lungleavin’ day! I recently wrote on my blog about this holiday. Would you be willing to link to this article? I would love if you’d be willing to write a little bit about inspiration and then give a shout out to Lungleavin day! Here is the link to the article: www(dot)mesothelioma.com/blog/autho... <http: mesothelioma.com="" blog="" authors="" heather="" fear.htm="">. Please let me know what you think.

Thanks!

Heather

Re: You Must Be Crazy

Darcia Helle — Wed, 30 Jan 2013 11:44:48 -0000

Hi, Heather. I've let this blog lapse. I suppose it's ironic that health complications have kept me from maintaining my Lyme blog. Did you not want to ask the question publicly? You didn't leave an email address.

Re: You Must Be Crazy

Heather — Tue, 29 Jan 2013 11:35:27 -0000

Hi,

I have a quick question about your blog, do you think you could e-mail me?

Heather

Re: A Journey of Love

Jennifer — Tue, 08 Jan 2013 15:10:26 -0000

HI Darcie,
I found your blog while searching the same disease. I spoke with our vet today and she thinks my dog, Shiloh, also has hepatocutaneious syndrome. He's around 12 years old and also a rescue. He's just the sweetest dog and he has been miserable the last few months. I could do more testing, including a biopsy, x rays and more blood testing, but the evidence seems to lead back to the original hypothesis. I feel terrible trying to decide what to do. The doctor trimmed his nails while we were there and he cried all day afterward. I don't want to cause him more pain, but he honestly doesn't seem ready to die, either. I just don't know what to do.
Thanks for your post.
Jennifer

Re: A Journey of Love

Darcia Helle — Thu, 27 Dec 2012 13:11:37 -0000

Your comment reminded me how badly I've neglected this blog.
Sounds like you've had amazing fortune in treating your dog's disease. I hope she's still doing well. Your situation is rare with this disease.
Sadly, we lost Sid on October 27. He was doing pretty well up until the last 72 hours. The last 24 was hell. He couldn't even hold water down. That's when I knew we had to let him go. I stayed up talking to him the whole night before. The poor little guy was so thirsty, but he'd throw up the water within minutes of drinking. He could barely move. I had to carry him outside, then back in. There was nothing else we could do, and I couldn't let him suffer.
We'd done the high protein diet and the egg each day. Sid couldn't handle oral antibiotics, but the injection helped him for a while. The oral antibiotics made him vomit horribly. I still miss him every minute of the day. But he's always with me in spirit.
I wish you the best with your dog. And that's awesome about the cat you've rescued!

Re: A Journey of Love

Melkojj — Wed, 12 Dec 2012 08:44:42 -0000

My Dog was diagnosed with Hepatocutaneous Syndrome on the 5th of march 2011. She was in a terrible state due to misdiagnosis and wrong treatment by an incompetent vet when the specialist hospital finally correctly diagnosed her. They suggested I put her to sleep on the day and gave her no more than 3 to 4 weeks to live. I was devastated and could not give up so with intense love and a strong will to live she is still alive today. I put her on Raw meat (cooked is ok too) with egg yolk. Give her 1 ml of Omega3-6 supplement per day and ran a long course of Antibiotics, starting with a combination of Metronidazole plus Amoxicillin , then switching to Metronidazole Plus Amoxicillin/clavulanic acid for about 10 months total. She has been off Antibiotics since Feb this year. She still has a good appetite and is still ok but starting to get a little unsteady on her feet. She is a Poodle/Maltese cross and is approximately 14 to 15 years old. I also have a blind cat that I rescued at 3 weeks from a dog attack. He is on YouTube " Blind cat kiwi " .

Re: Is Your Food Making You Sick?

Darcia Helle — Thu, 25 Oct 2012 12:42:11 -0000

Good points, Marty.

The doctor I referred to who told me about the gluten issue is an M.D. who practices integrative medicine. She's firmly routed in holistic medicine. The only doctors who have ever addressed nutrition with me have been some sort of naturopath.

Re: Is Your Food Making You Sick?

Marty B — Thu, 25 Oct 2012 11:16:20 -0000

As you know, Darcia, I have a few horror stories of my own on my way to discovering my gluten intolerance. As with you, my Kaiser doctors (for whom I pay $6,000 a year) never asked about or addressed my diet, let alone suggesting gluten was the problem. I owe it to my naturopath, who I had to pay out-of-pocket, to steer me to the gluten-free diet that saved me.

The one caveat I would suggest to your readers is that they seek the advice of a holistic medicine specialist before embarking upon a gluten-free diet. For some, foregoing gluten may result in a lack of other necessary nutrients and fiber. It might also cause them to miss some other serious problem that they have ascribed to gluten in error.

Re: Finding Balance In The Midst Of Struggle

Darcia Helle — Fri, 19 Oct 2012 12:25:28 -0000

Thanks, Jen! I'm looking forward to being airborne! :)

Re: Finding Balance In The Midst Of Struggle

Jennifer Lane — Thu, 18 Oct 2012 12:41:13 -0000

Great post, Darcia. That does sound difficult to strike the balance between ignoring the illness and drowning in the illness. Love the seesaw image. The only word of encouragement I can offer is that what goes down must come up...so if your butt's on the ground right now, pretty soon you'll be flying high!

Re: A Life Defined By Illness

Darcia Helle — Thu, 18 Oct 2012 09:59:58 -0000

Laura, I remember reading that 'Spoons' story a few years ago and being amazed at how well it described a typical day for us. It's a great way for the healthy people around us to understand what we go through.

I had no idea Rob Thomas supposedly has Lyme. That's interesting, and would certainly explain the song.

I was diagnosed with chronic Lyme about 5 years ago. I'm 50 now. The fibromyalgia diagnosis came 20 years ago, then CFS, Epstein Barr, etc. I've been sick since childhood. My best guess is the Lyme infection happened when I was about 6 or 7. I've tried several treatment programs and haven't had much luck. For me, alternative methods work best to keep the symptoms in check, but it's also expensive to keep it up long term. A year and a half of antibiotic treatment only made my digestive system worse. And a year and a half of antivirals (for the CMV and EBV) only caused slight kidney damage. No benefits from either.

How about you? Have you found a treatment plan that works for you?

Re: A Life Defined By Illness

Laura S — Tue, 16 Oct 2012 12:45:22 -0000

I can so relate to what you say about the self talk needed to get through each day. Knowing that you can only do X (if that) when there is an entire alphabet soup of never ending chores, tasks, errands, etc to be done can be very daunting. This also reminds me of the "Spoons" theory that describes what it's like to live with any chronic illness. Basically that a Healthy person does not have to methodically plan out each task of every day, but someone with a chronic illness has a limited number of "spoons" available to them each day and must carefully decide what activities they will use them on. Definitely worth reading, should be able to Google it, not sure of the author though. I also was diagnosed as having Fibromyalgia in 2000, got steadily worse/more intense symptoms until 2010 when I finally found out that I was suffering from Chronic Lyme disease and Co-Infections as well. I just happened across your blog spot today as I was searching the lyrics for Unwell (I had read somewhere that he also suffered from Lyme). I am thoroughly enjoying reading your posts and can so relate to everything in such a personal way. How long have you known about having Lyme? Are you currently on a treatment plan? I also used to LOVE to write and read but with the neuro problems it's become very difficult at times to where writing a simple email is mentally draining. You are very fortunate to have your writing as your escape, we all need an outlet and something to distract our minds and bodies away from being ill all the time. Thanks for what you do!

Re: I’m Not Crazy, I’m Just A Little Unwell

Darcia Helle — Fri, 12 Oct 2012 14:05:43 -0000

I'm not up to date with what's considered popular, either. Matchbox Twenty was really big in the '90s, back when I still listened to mainstream radio. Plus, Rob Thomas was treated like a sex symbol. I think it was impossible not to notice them here!

Re: I’m Not Crazy, I’m Just A Little Unwell

BestsellerBound — Fri, 12 Oct 2012 10:50:46 -0000

I haven't heard of Matchbox Twenty but that doesn't mean they're not popular in the UK LOL, I'm not really up to date with what's popular!! It would be awesome if you and I could go to a rock festival together in the UK, or the US even! :)

Re: You Must Be Crazy

Darcia Helle — Thu, 11 Oct 2012 18:24:10 -0000

I have no idea why any doctor would insist we're not experiencing what we tell them we feel. My guess is it's how they deal with their feelings of inadequacy. If they can't figure it out, it must not be happening. Until enough doctors have the symptoms... then suddenly, yes, it's real. Imagine that!

Re: I’m Not Crazy, I’m Just A Little Unwell

Darcia Helle — Thu, 11 Oct 2012 18:19:59 -0000

Writing, reading and the Internet have truly saved my sanity. If I'd been a very social person by nature and/or someone who loved to be active all the time, this illness would have been far worse for me psychologically. The one thing I really want to get better for is a rock festival in the UK!

Is Matchbox Twenty known over in the UK? They're very popular here.

Re: You Must Be Crazy

BestsellerBound — Thu, 11 Oct 2012 15:40:51 -0000

Why do doctor's so that? I have been infuriated in the past when I've been to a doctor and suggested what I thought what my problem might be, but have then been met by either laughter or some other derogatory comment, as if some doctors can't accept the possibility that a patient could actually know something about medical conditions... I hope your lymph gland problem is resolved soon, Darcia :(

Re: I’m Not Crazy, I’m Just A Little Unwell

BestsellerBound — Thu, 11 Oct 2012 15:32:49 -0000

Wow. This post really gives an insight into how difficult your life with Lyme really is, Darcia. The great thing is that you have the gift of writing, and when you're chatting on the Internet or even when you write your novels, somehow the Lyme can't affect that. I'd never heard that song, but after reading your story I find it very moving. Thanks for sharing this.

Re: You Must Be Crazy

Darcia Helle — Thu, 11 Oct 2012 10:23:36 -0000

Wow, you'd think a doctor would be able to find swelling around nerves in your spinal cord. It's scary how much is missed - or misdiagnosed. Was the swelling something that could be treated and cured? I can imagine how painful that was!

Removing the glands isn't an option. When they did the last CT, which was about 6 months ago, I had four masses. Each mass is in a different lymph gland. Removing just the masses is problematic. And, since they don't know what's causing them, or even what they are, there is no way to tell if more will (or have) develop. I recently tried an immunologist, thinking that was a better route than an EMT, but the office was awful and the doctor made me uncomfortable. So I need to find yet another. Our health care system excels at some things, but is horrible when it comes to dealing with chronic health problems.

Re: You Must Be Crazy

Debra L Martin — Thu, 11 Oct 2012 09:51:19 -0000

OH, you poor thing. Doctors can be so maddening. I had a similar experience with a doctor when I was having all my back issues. Hello - it hurts! There must be something wrong??? Nope, he didn't see anything to indicate that. Thank goodness the next doctor saw all of the swelling around the nerves in my spinal cord. I hope that the next doctor will take your symptoms more seriously. Have they suggested you have the glands removed? My best healing thoughts are being sent your way!

Re: You Don’t Look Sick – Chronic Illness and Bullies

Author_Sylvia_Massara — Mon, 08 Oct 2012 00:50:19 -0000

Hi Darcia, I am working on letting go; and I've let go quite a bit already. These things cannot be hurried, however, and therefore I am gentle and patient with myself. This way, I let go when I let go. One cannot force these things. I am much better though now than how I used to be. Writing about what happened here in your blog has helped to let go yet a bit more, so thank you :) Bit by bit, all will go in time.

Re: You Don’t Look Sick – Chronic Illness and Bullies

Darcia Helle — Sun, 07 Oct 2012 16:04:06 -0000

Sylvia, as you know from things we've talked about, there's a lot of similarities in our histories. I totally understand the hurt and pain you've gone through. I know one of the hardest things is to let go, but the hurt and anger you're holding is only allowing him more control. You deserve so much better.

Re: You Don’t Look Sick – Chronic Illness and Bullies

Darcia Helle — Sun, 07 Oct 2012 15:58:58 -0000

Why is it doctors who can't find an explanation find a way to turn the blame on us? I've seen dozens of doctors in my lifetime, and can only remember three who looked at me and honestly said, "I have no idea what's wrong." There's nothing worse than being told you're creating your own health problems!

Re: You Don’t Look Sick – Chronic Illness and Bullies

Author_Sylvia_Massara — Sat, 06 Oct 2012 20:28:09 -0000

I told myself I wasn't going to comment on this, but when I read your blog post I couldn't help myself as I can relate so much to what you are saying.
My condition is little known, and I have read on the internet that a lot of people have committed suicide because of it. This was my introduction to pudendal nerve neuralgia/entrapment. Most doctors and physical therapists don't even know what this condition is. As a result, sufferers might wander for years, going from doctor to doctor, trying to find out why they have pelvic floor pain, why their bladder doesn't want to empty properly, why they have the horrific hypersensitivity inside their bladder and vaginal canal (if they are female) or pain in the scrotum (if they are male), and why having sex hurts like hell. Sufferers cannot sit for long before the neuralgic pain becomes unbearable in that delicale area between the legs called the perineum. This gives you an idea of the nightmare I live with every day.
I was lucky in that I was able to find this condition in Google and my diagnosis was confirmed by the only surgeon in Australia who knows what this condition is about. There are only a handful of surgeons in the world who know about this condition, and surgery to untrap the nerve is not a recommended option as it is highly invasive and not very successful. Oftentimes, the surgery makes things worse.
I was also lucky that I found one physiotherapist in Australia who dealt with this problem, and I went to see him. I had to fly there as he lived in another State, but I went all the same. I was in so much panic and distress that I had to go and see whether this guy could help me. He was my only hope, as I decided that surgery was not an option for me.
My then husband did not accompany me on this trip because "he was too busy with work". At the time, I accepted this because my whole focus was on getting to see this physio, but later when I thought about it I was very hurt and upset. I was away for three days ( three hellish days), and then I had to go back for another three days of treatment. The second time, my ex flew up (at my expense) on the last day of treatment so that the physio could explain to him the nature of my condition; the years that it might take to recover, if ever; and the special exercises and stretches I had to do. In one of them, my ex was supposed to help me with a special stretch, which the physio showed him how to do.
After this, the real nightmare began: my physio said now that we untrapped the nerve (my pelvis and sacro-iliac joint were jammed, thus trapping this nerve), things were going to get worse before they got better. The nerve can give all sorts of horrid pain and sensations when disensitising, and this can take many, many years.
My ex just couldn't comprehend all this because on the outside I looked normal. So he started to abuse me, saying things like: "You're too negative" "Just get on with your life" "I can't stand it that you're complaining to me all the time about your pain, there is nothing I can do about it", and finally "You are not contributing to our living expenses; you should use your savings for this. Why should I be the only one paying the rent?" This is from someone who lived off me for some time after my mother died and she left me a small legacy. This is someone that I carried when he was unemployed and depressed, and who lived off me quite comfortably!
I was using my mother's legacy to pay for my exorbitant therapy costs and my personal needs such as vitamins, herbs, etc, to help my health. I also contributed by cooking his bloody meals and keeping the house clean while he went to work. There were times when I simply wanted to die, but I still got out of bed to cook his f**cking meals!
After 9 months of therapy (by this time I was going to a Sydney-based therapist on a weekly basis, and I still do. By the way, my ex didn't bother after a while with doing my stretch. It was all too much for him); I saw a tiny improvement, and an old boss of mine was able to offer me some part time work. But before this happened, I gave $23,000 of my money to my ex to shut him up for abusing me regarding my half of the rent and bills for 9 months. The money I gave him covered this, and he shut up; which meant I could have some peace and quiet to try and deal with my condition.
The only two people who got me through this time were my brother--whom I called up to three times a day in tears, telling him I wanted to die; and my physical therapist, who worked not only on my body but with my emotions. I also had a few select online friends who gave me encouragement. If it wasn't for these few people I would surely have found a way to commit suicide.
When I finally went to part time work, me ex started to complain again that I should be working full time as we had to save toward our future. He was paying child support for his 3 kids, and though I still had a sizeable amount of funds left from my legacy, which I put into the mortgage of the place we purchased in order to lower his part of the mortgage, I was still getting abused. Not to mention the fact that because I couldn't sit for long we couldn't go away on weekends, so my ex told me that if he wanted to take a holiday he'd go on his own as I wasn't able to make a trip.
Not once did the ex thank me for tying up all my funds so he could use other money we had to invest in the share market, supposedly to grow our retirement fund.
The straw that broke the camel's back came when I announced that I had no intentions of going back to full time work as my body couldn't take it, and that I was going to publish my novels in my free time. I had already paid for my half of the equity in the home we purchased, and I was going halves on all expenses in the house.
He didn't like this, and once again abused me for not "contributing" as much as him. Yeah, right! This went on for another year, and then he finally took our shares and purchased himself a Porsche because he said that he was entitled to some luxury item. Yeah, like my life had any luxury items in it! What I didn't know at the time was that he took all our share money to pay off for his car, and to line his own purse; shortly thereafter, he hooked up with a bimbo he met through one of his exes; and that was the end of it.
I was left having to sell our home as he stopped paying the mortgage and the bank was going to come after me. We lost thousands of dollars in a soft real estate market because I had to lower the price in order to sell the place; he never returned the money I gave him, nor did I see a cent of the shares he took off with. My retirement fund was just a few thousand dollars (not enough to live off). The law didn't help as it would have taken $50,000 or more to fight the ex in court, and I didn't have this money. I was hanging onto whatever I had because suddenly I was facing an uncertain future with next to nothing to retire on.
It's now been 3 years since I've lived with this condition. I flare up a lot, and I still have to go to work and smile as if nothing is going on inside my body. But the pain is there, the horrid sensations are there, and when I flare up, I still have to go to work because my ex took off with part of my livelihood and I don't have the luxury of being able to stay at home.
To outsiders, I look normal; healthy and happy. I think I should be awarded an Oscar for my performance (casting agents and film directors, take notice!). To look at me, you'd never think there was anything wrong with my health.
After we broke up, my ex sent me a nasty email, telling me that he never could put up with my "health problems that no doctor was ever able to diagnose". That's right; he didn't even believe what the physio said about my condition. This was the final betrayal.
So sorry to carry on so much. I have enough material here to write several novels :)