I'm having some very weird symptoms lately....weird for me anyway: severe acid reflux, nausea, and food aversion.
Food aversion is actually fairly common for people with Lyme disease, from what I hear. And of course nausea/loss of appetite is a problem that many chronically ill people deal with on a regular basis.
This will be GREAT for weight loss, of course, but the problem is that I have a lot of medication to take and much of it needs to be taken with food. One antibiotic, Mepron, is supposed to be taken after a fatty meal (approximately 20 grams of fat per tsp of Mepron enhances absorption of the medicine)! Fatty food sounds so revolting to me right now!! So what to do?
Several kind people suggested making smoothies and sipping them slowly, and one person actually gave me her recipe, so I will share it with you, in case anyone else besides me is having this problem with food aversion....
Ann Marie's Berry Smoothie
Ingredients:
1/4 C Greek-style yogurt, plain (I use Trader Joe's)
1/4 C almond flour or almond meal (make sure it's certified gluten free!)
frozen/fresh fruit (blueberries, strawberries - nothing too sweet)
a dash of aloe juice to soothe the stomach
a dash of water with lime
Directions:
Whip everything up in your blender or magic bullet, and voila!
According to the nutrition info, there should be exactly 20 grams of fat in this, and I can assure you that it does not seem fatty when it's going down. Yay for almond meal!
I have to stay on a fairly low carb diet now (just found out that I'm pre-diabetic, oh joy!). The nice thing about this smoothie is that the carb content is not bad (< 10 grams?) and if it needs to be sweeter I can add a trace of stevia without adding to the carbs.
Tuesday, September 14, 2010
Monday, September 6, 2010
Dusting off the Crockpot again
Decided to do a cooking post tonight....I'm sure everyone's had enough of my health issues for a while!
And it's definitely getting to be the right time of year for Crockpot cooking...Autumn is just around the corner and the college football season has already started. Hubby was in the front room this evening as I was putting the finishing touches on dinner in the kitchen; he was almost jumping up and down with joy as the Boise State Broncos managed to win (very narrowly) against Virginia State. Well, I was happy too, let's face it; my daughter Robin just graduated from Boise State last June and we've all adopted that University as our own in this house, at least where football is concerned!! :)
So tonight I made another wonderful Indian curry recipe from the Crockpot Lady's blog; I had tried a couple of curries from her site before, both of which were good, but this one was over the top GREAT! I loved it, and my five year old cleaned his plate! My husband is not a big curry fan but admitted that it was good and that he enjoyed it. Which is good because I made a LOT! LOL!!
Yeah, I know that curry and football don't really go together as far as most people are concerned, but I really wanted some curry tonight! :)
The recipe I used is Crockpot Chicken Makhani, aka Indian Butter Chicken...I made my own slight modifications. Stephanie's recipe is here; she got it from a fellow blogger, Kindra, and modified it to suit herself. Kindra's recipe is here.
Crockpot Chicken Makhani
Ingredients
2 pounds boneless skinless chicken thighs (can be frozen)
1 med onion, sliced
6 garlic cloves, chopped
1/2 stick butter, cut into chunks
15 cardamom pods (sewn together or tied in cheesecloth)
2 tsp curry powder
1/2 tsp cayenne pepper
1 T garam masala
approx 1 inch grated fresh ginger root
1 can coconut milk (13.5 oz)
1 can (6 oz) tomato paste
2 T lemon or lime juice
1 C plain yogurt
1 tsp salt (more or less to taste)
NOTE: If you don't have cardamom pods, you can use 1/2 tsp ground cardamom, maybe a bit more. You can always add salt, more spices, to taste. Always feel free to modify it to suit your own taste buds!
Directions
Use a 5 quart or larger crockpot. You can either sew together the cardamom pods using a needle and thread or you can tie them in a little cheese cloth bundle instead, if you have cheesecloth in the house. Put some sliced onion in the bottom of the crockpot, then place chicken on top. Scatter rest of onion and garlic over chicken. Combine dry spices, grated ginger, tomato paste, lemon or lime juice, and coconut milk in a medium sized bowl and pour the resulting mixture over the chicken and vegetables in the pot. Drop chunks of butter randomly over the top.
Cover and cook on low for 8 hours, or high for 4 (I doubled the recipe and cooked it on high for 2 and low for 4). The chicken will shred easily when fully cooked.
Stir in the plain yogurt 15 minutes before serving.
Discard cardamom pods. Salt to taste, serve with white or brown basmati rice. Enjoy!!
Wednesday, August 25, 2010
A painful lesson in frugality - a blessing in disguise!
I recently learned something the hard way: my family can (almost) get along on MUCH less income than I thought....the "hard way" because I experienced a sudden, unexpected and scary drop in income. "Almost" because there are some medical bills I couldn't pay, but I suspect that I might figure out a way to pay them if our financial problems persist much longer!
For those who don't know, I've been working part-time since April 5th of this year; my employers have been incredibly kind and generous, allowing me to work 100% from home over the Internet. They've even accepted the fact that I've moved 200 miles away to the cooler, cloudier climate of the Central Coast of California, where my lupus flares have been less frequent and even my Lyme disease symptoms seem to be more controlled.
My work hours have dropped from 40 to 24 per week, but the state disability checks make up for that, paying me for all of the hours that I'm no longer working.
Just a side comment here....it's really great to know that a program that I've been paying into for all these years actually WORKS the way it's supposed to! I remember looking at those SDI deductions on my paycheck stubs in the past, resenting the fact that my hard-earned money was being taken away, but now I'm incredibly grateful that they did take that money and put it away for me!
OK, anyway.....in mid-July suddenly my disability checks stopped! They sent me my "final" check with a letter that explained that if I was still disabled, I needed another statement from my doctor so that my benefits might be extended. So I gave a copy of the physician's statement form to one of my doctors....should be a straightforward process to fill it out and send it off, right? Doctors do this all the time, after all!
Well, unbeknownst to me, this particular doctor happened to be moving to a new office right around the time I gave him the form. And apparently the form was LOST during the packing process!
I was patiently waiting and waiting (well, perhaps IMPATIENTLY waiting and waiting) for some indication that my benefits had been extended....I called the SDI office from time to time to see if they had received the paperwork, but the answer was always "no". So after a couple of weeks I called the doctor's office and asked for a copy of the form that they sent off to SDI. This was how I found out that it had disappeared during their office move....they had no copy in my chart, no evidence of the SDI form anywhere.
At that point (after I calmed down) I gave copies of the SDI physician's statement to TWO of my doctors, because I wasn't going to put all of my eggs in one basket again! Then I waited another two weeks, since it can take up to 10 business days for SDI to "process" the doctor's statements.
FINALLY, yesterday I was told that, yes, they DID receive one of the forms, and that I needed to submit all of my timecards from 7/14 onward so that SDI can send me my missing checks!! I've been extended to December! Hallelujah!!
Needless to say I filled out and faxed off those timesheets first thing this morning! :)
However, during this time that our income was so severely reduced, I was absolutely AMAZED to see that somehow I was able to pay our regular monthly bills AND still buy groceries, prescriptions, diapers, etc. As I mentioned, there were a couple of large medical bills (over $100) that have to wait until I get my retroactive disability payments, but I've paid the rent, I've paid the utilities, I've paid my student loan payment.....I would never have believed that I could do this on less than 2/3 of my regular pay!
Yes, we did have to tighten our belts and pay less than I would have liked to pay on various credit cards (I like to pay a LOT more than the minimum whenever possible). We also ate a lot of simple, inexpensive meals such as scrambled eggs, bacon and my homemade almond-and-coconut flour biscuits, chili, baked beans and gluten free franks....well, you get the picture.
Also, as a Christian, I have to point out that the Almighty must have been at work here, stretching our funds. :)
But it was such an eye-opener, such a revelation, to discover that we could actually make it on so little money. I think I needed to know this now, because if I go on full-time disability my income would drop to 60% of my regular full-time pay. This proved to me that we could do it....and we could even do it comfortably if we found a cheaper place to live!
My aunt June once told me that the one economic factor that makes the biggest difference in your budget is something that YOU can control: housing costs. You can choose to live in a less expensive home. You have no real control over grocery prices, gas prices, utility rates, etc., and you can only economize so much on those items. But it is possible to economize significantly on rent or on a mortgage by simply choosing NOT to live in the most expensive place you can afford.
Yes, this time of reduced income has been really, really tough. But it was worth it to learn that we can survive if I go on full-time disability! I hope I never have to do that, but it's still an option that's on the table.
For those who don't know, I've been working part-time since April 5th of this year; my employers have been incredibly kind and generous, allowing me to work 100% from home over the Internet. They've even accepted the fact that I've moved 200 miles away to the cooler, cloudier climate of the Central Coast of California, where my lupus flares have been less frequent and even my Lyme disease symptoms seem to be more controlled.
My work hours have dropped from 40 to 24 per week, but the state disability checks make up for that, paying me for all of the hours that I'm no longer working.
Just a side comment here....it's really great to know that a program that I've been paying into for all these years actually WORKS the way it's supposed to! I remember looking at those SDI deductions on my paycheck stubs in the past, resenting the fact that my hard-earned money was being taken away, but now I'm incredibly grateful that they did take that money and put it away for me!
OK, anyway.....in mid-July suddenly my disability checks stopped! They sent me my "final" check with a letter that explained that if I was still disabled, I needed another statement from my doctor so that my benefits might be extended. So I gave a copy of the physician's statement form to one of my doctors....should be a straightforward process to fill it out and send it off, right? Doctors do this all the time, after all!
Well, unbeknownst to me, this particular doctor happened to be moving to a new office right around the time I gave him the form. And apparently the form was LOST during the packing process!
I was patiently waiting and waiting (well, perhaps IMPATIENTLY waiting and waiting) for some indication that my benefits had been extended....I called the SDI office from time to time to see if they had received the paperwork, but the answer was always "no". So after a couple of weeks I called the doctor's office and asked for a copy of the form that they sent off to SDI. This was how I found out that it had disappeared during their office move....they had no copy in my chart, no evidence of the SDI form anywhere.
At that point (after I calmed down) I gave copies of the SDI physician's statement to TWO of my doctors, because I wasn't going to put all of my eggs in one basket again! Then I waited another two weeks, since it can take up to 10 business days for SDI to "process" the doctor's statements.
FINALLY, yesterday I was told that, yes, they DID receive one of the forms, and that I needed to submit all of my timecards from 7/14 onward so that SDI can send me my missing checks!! I've been extended to December! Hallelujah!!
Needless to say I filled out and faxed off those timesheets first thing this morning! :)
However, during this time that our income was so severely reduced, I was absolutely AMAZED to see that somehow I was able to pay our regular monthly bills AND still buy groceries, prescriptions, diapers, etc. As I mentioned, there were a couple of large medical bills (over $100) that have to wait until I get my retroactive disability payments, but I've paid the rent, I've paid the utilities, I've paid my student loan payment.....I would never have believed that I could do this on less than 2/3 of my regular pay!
Yes, we did have to tighten our belts and pay less than I would have liked to pay on various credit cards (I like to pay a LOT more than the minimum whenever possible). We also ate a lot of simple, inexpensive meals such as scrambled eggs, bacon and my homemade almond-and-coconut flour biscuits, chili, baked beans and gluten free franks....well, you get the picture.
Also, as a Christian, I have to point out that the Almighty must have been at work here, stretching our funds. :)
But it was such an eye-opener, such a revelation, to discover that we could actually make it on so little money. I think I needed to know this now, because if I go on full-time disability my income would drop to 60% of my regular full-time pay. This proved to me that we could do it....and we could even do it comfortably if we found a cheaper place to live!
My aunt June once told me that the one economic factor that makes the biggest difference in your budget is something that YOU can control: housing costs. You can choose to live in a less expensive home. You have no real control over grocery prices, gas prices, utility rates, etc., and you can only economize so much on those items. But it is possible to economize significantly on rent or on a mortgage by simply choosing NOT to live in the most expensive place you can afford.
Yes, this time of reduced income has been really, really tough. But it was worth it to learn that we can survive if I go on full-time disability! I hope I never have to do that, but it's still an option that's on the table.
Monday, August 2, 2010
Move is over...now to unpack!
OK, we've been here for a month, and I DO have the kitchen unpacked and (somewhat) organized. Last night I actually made chili! I know that many of you are living in areas with sweltering temperatures but we are now on the Central Coast of California and it's COOL here! In more ways than one, actually! :)
In the picture above, at the beginning of this post, you can see what it looks like from our front porch on a sunny day....the marine layer is hanging over the ocean but has rolled back far enough to allow some sunshine.
In the picture below, the beach on a cloudy day:
The hottest it's been so far this summer is 77 F, at least since we've been here. I know that it CAN get hotter, but I think it's rare.
Of course, this was one of the main reasons we moved here....the cooler, cloudier climate seems to help control my lupus and Lyme disease symptom flares.
We're still in the process of settling in, and it will take some time to finish unpacking everything. At least I'm able to start cooking my own gluten free foods at home again. Soon there will be time to experiment with new recipes and to update my blogs as well!
I hope that all of you are enjoying your summers, and staying gluten free, wherever you are!
Monday, July 26, 2010
Warning, warning.....
.....danger, Will Robinson!
(For those who are too young to have watched television in the 1960s, this is a reference to a VERY old TV show called Lost In Space. The robot used to say this quite frequently.)
I feel I should share the story of my chronic illnesses as a warning because it just may help someone who is new to this blog and who is in diagnostic limbo....my story is sort of a mystery novel...tracking down the culprit, step by step, until finally you have him cornered!
Background: my family has a genetic predisposition to autoimmune diseases. I've probably had celiac disease since infancy, plus psoriasis and Hashimoto's thyroiditis since I was in my teens. Wasn't dx with Hashi's until my thyroid was basically dead though, in my early thirties. Wasn't dx with celiac until much later in life...more on that further down.
In March 2004 I noticed that the whites of my eyes were yellow. It was a very serious case of hepatitis (AST/ALT > 3500!), but all virus tests from A to Z were negative. In fact, ALL tests for any known disease that my hepatologist could think of were negative. They were talking about a liver transplant at that point.....then I discontinued an over-the-counter herbal medication I was taking and things improved spontaneously. I was off work for weeks and had to endure months of my skin and eyes being the color of a yellow highlighter, but I thought it was just an isolated health incident. Eventually I was "well"....so I thought.
Then in the summer of 2007 I noticed severe back pain when my family and I were spending the day at an amusement park. I kept having to stop and sit....I had never had problems like this before. We ended up cutting our visit short and going home because of my back pain.
I told my doctor about it and she x-rayed my back but there was nothing on the x-rays to explain the pain. She laughed and told me that I was the only person over the age of 40 that DIDN'T have arthritis in my back! She did not offer to do MRIs, or any other tests at all, for that matter. Nor did she refer me to a specialist. I was basically dismissed as a hypochondriac.
The pain got worse and worse; by the spring of 2008 I could only walk or stand for maybe 10 minutes at a time. This was a problem because, in addition to a full time day job, I was a college instructor part-time in the evening, and that required me to stand. I finally ended up in a wheelchair and persuaded the college administration to give me special tools that would allow me to teach sitting down. In addition, I was developing MANY other bizarre symptoms that helped to keep me in that wheelchair: muscle spasms in my feet, hands, and ankles, peripheral neuropathy, vertigo, double vision, gastric problems, bowel and bladder issues, lots of PAIN everywhere.
In desperation I began to seek out other doctors: rheumatologists, neurologists, gastroenterologists, etc., etc. Sure enough I was diagnosed with fibromyalgia, RA, autoimmune hepatitis, lupus, and celiac disease. But the cause of my back pain and my neurological symptoms remained unexplained.
I joined several online health groups, including celiac.com, which has a board with a number of forums exclusively for celiac disease or gluten intolerance issues. One of my friends there was shocked at the number of diagnoses that I had racked up in a mere 2 years and told me that I MUST be tested for Lyme disease. I insisted that it was impossible, but she kept pestering me until I decided to get tested just to shut her up! :)
Of course, I tested positive for Lyme, and have now been under treatment for 7 months with several different antibiotics. Unfortunately I have had Lyme for years now.....I believe I was likely bitten by an infected tick shortly before my episode of "cryptogenic" hepatitis in 2004. Lyme disease doesn't usually affect the liver that way, but some of the coinfections (Babesiosis, Ehrlichiosis, and Bartonella) can definitely cause liver damage! And I apparently have all three. Unfortunately my hepatologist did NOT think of testing me for Lyme or coinfections....most doctors don't, actually. The over-the-counter herbal supplement I was taking apparently added to the liver irritation being caused by the tick-borne infections.
Everything seemed to be dormant for a time, but the Lyme spirochetes were apparently busily chewing on my spinal disks from 2004 to 2007....the bacteria LOVE collagen, so they frequently show up in the disks and accelerate degenerative disk disease to the point of causing radiculopathy. Spinal MRIs finally uncovered the secret of my back pain....bulging disks pressing on spinal nerves. And my other issues such as vertigo, double vision, etc., can also be attributed to either Lyme or Bartonella.
In addition to all of this damage, Lyme disease almost certainly triggered the astounding number of new autoimmune diseases I developed, including my autoimmune hepatitis, rheumatoid arthritis, lupus, and fibromyalgia. Lyme is notorious for triggering and/or mimicking autoimmune diseases and fibro.
Mystery solved! :(
Please, any of you out there in diagnostic limbo....or even those who have suddenly had an EXPLOSION of diagnoses such as mine, especially autoimmune diseases, please get tested for Lyme disease! Most doctors do not think of Lyme as a big problem (it IS) because they have told it's rare (it ISN'T).
Please visit the Lyme forum at HealingWell.com plus the following helpful link for more info:
www.anapsid.org/lyme/index.html
Melissa Kaplan, the creator of that website, has LOTS of extremely good links on that page to other informative sites.
(For those who are too young to have watched television in the 1960s, this is a reference to a VERY old TV show called Lost In Space. The robot used to say this quite frequently.)
I feel I should share the story of my chronic illnesses as a warning because it just may help someone who is new to this blog and who is in diagnostic limbo....my story is sort of a mystery novel...tracking down the culprit, step by step, until finally you have him cornered!
Background: my family has a genetic predisposition to autoimmune diseases. I've probably had celiac disease since infancy, plus psoriasis and Hashimoto's thyroiditis since I was in my teens. Wasn't dx with Hashi's until my thyroid was basically dead though, in my early thirties. Wasn't dx with celiac until much later in life...more on that further down.
In March 2004 I noticed that the whites of my eyes were yellow. It was a very serious case of hepatitis (AST/ALT > 3500!), but all virus tests from A to Z were negative. In fact, ALL tests for any known disease that my hepatologist could think of were negative. They were talking about a liver transplant at that point.....then I discontinued an over-the-counter herbal medication I was taking and things improved spontaneously. I was off work for weeks and had to endure months of my skin and eyes being the color of a yellow highlighter, but I thought it was just an isolated health incident. Eventually I was "well"....so I thought.
Then in the summer of 2007 I noticed severe back pain when my family and I were spending the day at an amusement park. I kept having to stop and sit....I had never had problems like this before. We ended up cutting our visit short and going home because of my back pain.
I told my doctor about it and she x-rayed my back but there was nothing on the x-rays to explain the pain. She laughed and told me that I was the only person over the age of 40 that DIDN'T have arthritis in my back! She did not offer to do MRIs, or any other tests at all, for that matter. Nor did she refer me to a specialist. I was basically dismissed as a hypochondriac.
The pain got worse and worse; by the spring of 2008 I could only walk or stand for maybe 10 minutes at a time. This was a problem because, in addition to a full time day job, I was a college instructor part-time in the evening, and that required me to stand. I finally ended up in a wheelchair and persuaded the college administration to give me special tools that would allow me to teach sitting down. In addition, I was developing MANY other bizarre symptoms that helped to keep me in that wheelchair: muscle spasms in my feet, hands, and ankles, peripheral neuropathy, vertigo, double vision, gastric problems, bowel and bladder issues, lots of PAIN everywhere.
In desperation I began to seek out other doctors: rheumatologists, neurologists, gastroenterologists, etc., etc. Sure enough I was diagnosed with fibromyalgia, RA, autoimmune hepatitis, lupus, and celiac disease. But the cause of my back pain and my neurological symptoms remained unexplained.
I joined several online health groups, including celiac.com, which has a board with a number of forums exclusively for celiac disease or gluten intolerance issues. One of my friends there was shocked at the number of diagnoses that I had racked up in a mere 2 years and told me that I MUST be tested for Lyme disease. I insisted that it was impossible, but she kept pestering me until I decided to get tested just to shut her up! :)
Of course, I tested positive for Lyme, and have now been under treatment for 7 months with several different antibiotics. Unfortunately I have had Lyme for years now.....I believe I was likely bitten by an infected tick shortly before my episode of "cryptogenic" hepatitis in 2004. Lyme disease doesn't usually affect the liver that way, but some of the coinfections (Babesiosis, Ehrlichiosis, and Bartonella) can definitely cause liver damage! And I apparently have all three. Unfortunately my hepatologist did NOT think of testing me for Lyme or coinfections....most doctors don't, actually. The over-the-counter herbal supplement I was taking apparently added to the liver irritation being caused by the tick-borne infections.
Everything seemed to be dormant for a time, but the Lyme spirochetes were apparently busily chewing on my spinal disks from 2004 to 2007....the bacteria LOVE collagen, so they frequently show up in the disks and accelerate degenerative disk disease to the point of causing radiculopathy. Spinal MRIs finally uncovered the secret of my back pain....bulging disks pressing on spinal nerves. And my other issues such as vertigo, double vision, etc., can also be attributed to either Lyme or Bartonella.
In addition to all of this damage, Lyme disease almost certainly triggered the astounding number of new autoimmune diseases I developed, including my autoimmune hepatitis, rheumatoid arthritis, lupus, and fibromyalgia. Lyme is notorious for triggering and/or mimicking autoimmune diseases and fibro.
Mystery solved! :(
Please, any of you out there in diagnostic limbo....or even those who have suddenly had an EXPLOSION of diagnoses such as mine, especially autoimmune diseases, please get tested for Lyme disease! Most doctors do not think of Lyme as a big problem (it IS) because they have told it's rare (it ISN'T).
Please visit the Lyme forum at HealingWell.com plus the following helpful link for more info:
www.anapsid.org/lyme/index.html
Melissa Kaplan, the creator of that website, has LOTS of extremely good links on that page to other informative sites.
Friday, June 25, 2010
What to eat when there's no time to cook - a tribute to Trader Joe's!
We move in less than a week now...I really HATE moving! :(
Oh well, it will be worth it to get to the cooler, foggier environment of the central coast of California. That should help my lupus flares calm down and also my Lyme symptoms that are aggravated by the heat in the San Gabriel Valley of Southern CA where I currently live.
I just want to post a tribute to Trader Joe's for their quick gluten free foods; we've been living on the following TJ's meals as we pack up the kitchen:
Gluten free mini tacos (chicken and beef)
Gluten free meatballs (sun-dried tomato and buffalo chicken)
Gluten free noodle bowls (garlic, spring onion, mushroom)
Gluten free corned beef hash
Gluten free Chicken Tikka Masala
Gluten free pastas (with or without the meatballs mentioned above)
Any of the above served with a green salad makes an easy, satisfying meal that you can make quickly with a minimum number of pots and pans.
I'm SO glad there is a TJ's near our new home! I would be very sad to live in an area without a Trader Joe's. My mom lives in Medford, OR, and doesn't have a TJ's nearby. However Fred Meyer does have a lot of gluten free foods so we're still able to visit her and stay for a while without too much trouble.
More soon! Maybe after we're in the new house!
Oh well, it will be worth it to get to the cooler, foggier environment of the central coast of California. That should help my lupus flares calm down and also my Lyme symptoms that are aggravated by the heat in the San Gabriel Valley of Southern CA where I currently live.
I just want to post a tribute to Trader Joe's for their quick gluten free foods; we've been living on the following TJ's meals as we pack up the kitchen:
Gluten free mini tacos (chicken and beef)
Gluten free meatballs (sun-dried tomato and buffalo chicken)
Gluten free noodle bowls (garlic, spring onion, mushroom)
Gluten free corned beef hash
Gluten free Chicken Tikka Masala
Gluten free pastas (with or without the meatballs mentioned above)
Any of the above served with a green salad makes an easy, satisfying meal that you can make quickly with a minimum number of pots and pans.
I'm SO glad there is a TJ's near our new home! I would be very sad to live in an area without a Trader Joe's. My mom lives in Medford, OR, and doesn't have a TJ's nearby. However Fred Meyer does have a lot of gluten free foods so we're still able to visit her and stay for a while without too much trouble.
More soon! Maybe after we're in the new house!
Monday, June 14, 2010
A post on Lyme disease and how it affects my life
I know that I've been a bad blogger lately, but I've had more than one good excuse for the dearth of posts.
For one thing, I am currently in a MAJOR battle with Anthem Blue Cross....they have denied me treatment with intravenous Rocephin, which is an antibiotic that is good at penetrating the blood-brain barrier and is the preferred treatment for people with late-stage neuro-Lyme (like me).
And this is only one of the huge issues that are now currently consuming my life. Another big problem is that we are losing our home...we have already started the short sale process and have found a place to rent near the coast (beach town). The coast is the preferred destination because of my extreme sensitivity to light and heat, due to my lupus and Lyme disease and Babesiosis (a Lyme coinfection). We hope it will be cooler and cloudier there, which will help prevent frequent lupus flares. So I'm trying to pack to move in less than two weeks (AAAACKKK!!)
Lyme disease is definitely a good topic for this blog; Lyme disease generally causes gluten intolerance so, just like people with celiac disease, Lymies should avoid gluten as well. In fact, it is best to be low-carb, grain- and sugar-free if you have Lyme disease, because carbs/sugars feed the little buggers.
Without further ado, I will reproduce a wise and wonderful post by Minoucat from Lymenet; it explains all about how your life changes if you have Lyme disease. Even if you DON'T have Lyme, but are chronically ill with lupus or MS or CFS or some other nasty autoimmune disease or syndrome, you will probably see yourself and some of your daily problems in this article. The original post may be found here:
http://home.pon.net/caat/lyme/minoucat.html
Lyme and everyday life — what changes?
Someone new to Lymenet asked for a list along these lines for newbies; I hope this helps.
For one thing, I am currently in a MAJOR battle with Anthem Blue Cross....they have denied me treatment with intravenous Rocephin, which is an antibiotic that is good at penetrating the blood-brain barrier and is the preferred treatment for people with late-stage neuro-Lyme (like me).
And this is only one of the huge issues that are now currently consuming my life. Another big problem is that we are losing our home...we have already started the short sale process and have found a place to rent near the coast (beach town). The coast is the preferred destination because of my extreme sensitivity to light and heat, due to my lupus and Lyme disease and Babesiosis (a Lyme coinfection). We hope it will be cooler and cloudier there, which will help prevent frequent lupus flares. So I'm trying to pack to move in less than two weeks (AAAACKKK!!)
Lyme disease is definitely a good topic for this blog; Lyme disease generally causes gluten intolerance so, just like people with celiac disease, Lymies should avoid gluten as well. In fact, it is best to be low-carb, grain- and sugar-free if you have Lyme disease, because carbs/sugars feed the little buggers.
Without further ado, I will reproduce a wise and wonderful post by Minoucat from Lymenet; it explains all about how your life changes if you have Lyme disease. Even if you DON'T have Lyme, but are chronically ill with lupus or MS or CFS or some other nasty autoimmune disease or syndrome, you will probably see yourself and some of your daily problems in this article. The original post may be found here:
http://home.pon.net/caat/lyme/minoucat.html
Lyme and everyday life — what changes?
Someone new to Lymenet asked for a list along these lines for newbies; I hope this helps.
Lyme disease and the tick-borne coinfections affect most aspects of everyday life, sometimes in subtle ways. Or ways that aren’t subtle, but that you don’t associate with Lyme and Co. So here’s my list of what changes: I’m just going to say “Lyme” for short, but truly I mean all the tick borne diseases, since Bb all by itself seems to be pretty rare in chronically ill patients.
This is my opinion only, based on my own years of experience with LD, and that of friends and the folks I’ve met on the internet.
Exercise. Effect: reduced stamina and interest, “air hunger”, and increase in pain. Suggestion: Slow down, focus on breathing, stretching, and gentle muscle toning, and watch out for the high-impact workouts:
—Lyme induces it’s own brand of exhaustion because of its physiological effects, including hypercoagulation, toxins released by the bugs, impairment of the nervous system and the brain, and the effects on the hypothalamus, pituitary, adrenals, and thyroid. On top of that, your body is using a lot of its resources to fight infection. Lyme can cause severe damage to cartilage.
—Some antibiotics — in particular, the quinolones — can cause severe tendon damage. It’s important to know if strenuous exercise is contraindicated with any treatment you’re on.
—Lyme does poorly in well-oxygenated blood and endorphins help with pain control and in reducing depression, so exercise is a Good Thing. Exercise modalities that go well with Lyme are swimming, warm-water aquacize, yoga, tai-chi, cycling, and walking.
Work. Effect: loss of ability to concentrate, think clearly, remember, articulate, and stay awake. The anxiety and rage that Lyme can induce can be a real workplace problem. Suggestion: Cut back in hours if possible; eliminate every “extra” that you can. For example, fix the simplest possible meals, let the housework slide, limit your social engagements.
—For the most part, people at work really don’t understand chronic illness and don’t particularly want to. In fairness, the way we’re set up in this country, it’s not their problem—you can get the job done, or not. But don’t expect a lot of empathy or accommodation over the long run. Find out what our medical leave options are, in case you need them.
--There's a tendency to plunge into projects when you're feeling good, and of course the deadline hits when you're having a particularly lymie moment. So monitor yourself carefully, and realize that if you're herxing, or your changing meds, you're liable to have unpredictably diminished capacity at critical moments. Allow yourself more time than you used to need....
--Some folks have accomplished remarkable feats of working or going to school despite Lyme. But this is not a contest -- do what makes sense FOR YOU, and keep in mind that you ultimate goal is to HEAL -- after that, you can go on and do what you need to do.
Emotions Effect: Lyme can make you anxious, enraged, impatient, scared, and libidoless. Suggestion: Realize that you are truly not yourself. Don't rush into fights.
--There's a lot of info on lymenet about managing anxiety, depression, aggression, and insomnia. Read up on it.
--Some of your feelings of wrath, fear, etc. are justified. Some are really not, and are purely a product of Lyme. I've said some horrid things, and had some horrid things said to me by my Lymie husband, that would never have been thought, let alone said, if not for lymeheadedness. Be ready to apologize after you've lymified someone, and get your family and friends to read up on Lyme if you can, so that they understand what it does to your brain and moods.
--Get some sleep, even if it's chemically induced, and some antidepressants if you can find some that work (including natural ones). And realize that the mood and brain problems do go away with effective treatment, and that what you feel is as much a real symptom of Lyme as your headaches, fevers, etc.
--Lyme can cause some majorly weird brain stuff, including hallucinations and seizures. Also autistic-like behaviors in children, dementia-like behaviors, bipolar like behaviors, compulsive/obsessive behaviours...you get the picture. These do resolve with effective treatment. Just be warned so you don't totally freak if this happens to you or the lymie in your life. Google on "host management" and "parasites" and you'll come up with some fascinating research by zoologists, especially on toxoplasmosis and schizophrenia.
Family/Friends: Effect: Rages, anxieties, resentments, loss of libido, inability to do basic things that you always used to for your family (like keep the checkbook balanced or put meals together). Suggestion: Get the info for caregiver support groups for your family, have the LLMD talk to the family, give them the info on Lyme, be upfront about what has to change, and find a counselor to help you and them.
—Family stuff can be pretty awful. Most people really don’t get it, and many Lymies feel very betrayed by the very people they thought would support them through their ordeal. There’s the whole issue of wage loss, dealing with children, the horrendous expense of Lyme, and massive changes in everyday family life. And, let’s face it, Lymies can be pretty hysterical and cranky to deal with. Come vent on Lymenet or wherever when you need to.
Diet: Effect: You probably need to make some major changes. Suggestions: Experiment and keep a journal. And discipline yourself to knock off the stuff that you knew wasn’t good for you even before you had Lyme.
—Lyme has so many effects on the stomach that your ability to absorb nutrients and abx may be seriously impaired. And your stomach may hurt tremendously and cause eating problems. It’s imperative that you eat as healthily as possible, and pay attention to any sensitivities, like gluten and dairy. It’s a really good idea to do a good food allergy test, like the one the Great Smokies Lab does, and to check for Leaky Gut Syndrome. Many lymies experience hypoglycemia, and changing your eating patterns can make this a more manageable problem. Read up on your meds and find out what foods are contraindicated (as in, no dairy within 2 hours of doxy), and what has to be taken on an empty stomach.
--Be aware of the yeast overgrowth problem that abx users experience and adjust your diet (low carbs and sugar). You might need to eat more frequently to reduce stomach pain from meds. Drink a lot of liquids and stay away from alcohol, which puts an extra load on the liver and can promote yeast.
—Many Lymies experience weight gain. Some of that may be from the inflammatory and stress response; thyroid and adrenal dysfunction; reduction in physical activity; and who knows what all else. I found that drinking liquids, especially green tea, can help reduce weight gain to a degree.
Smoking: Effect: Aside from all the run-of-the-mill problems with smoking, it creates a lyme-friendly environment. Suggestion: Quit.
—This is not a knee-jerk reaction against smoking — smoking really is a problem if you have Lyme. Smoking provides an environment in your blood that is very comfortable to Borrelia and other pathogens. It messes up an already messed-up stomach, and compromises your immune system.
—Lyme complicates the quitting scenario, because Lyme can induce compulsive behaviors, which smoking certainly is. In addition, the nicotine really does help improve cognitive function, but it’s a small improvement for a huge price. And if you think non-lymie people who are trying to quit smoking are grumpy….Well, the grumpy effect is supercharged for Lymies.
You and the medical profession and social services Effect: Loss of trust, confusion about who to believe and what to do, treatment paralysis, fear. Suggestion: Go to a real LLMD recommended by other lymies, explore all your treatment options (alternative and otherwise), talk to other lymies as much as possible, research, research research, and be your own advocate.
—You’ll spend more time and money thinking about this disease, your health, and every aspect of your life than you ever wanted to or believed was possible. You’ll spend anxious hours looking for doctors, hating doctors, sitting in waiting rooms, figuring out procedures. You might end up spending time in the ER with frightening symptoms and doctors who have no understanding of your illness or treatment.
--It’s a good idea to keep a list of all your meds, your LLMD, and your protocols with you to take to the ER. Parents of Lyme children have a particularly hard time with hospitals and the interference of the medical establishment. Look this up on lymenet and be prepared.
Insurance Effect: You may find your meds aren’t covered, disability is denied, and the bulk of your LLMD costs are not covered. Suggestion: Find out everything you can about your health plan, document everything, and keep copies of your doctor’s notes and your test results.
—The insurance question can be brutal. I can’t emphasize enough how important it is to document every little thing. And the insurance issue can be a huge stressor when it comes to the decision to keep working; many of us have had to work way past the time we should have quit just to keep our insurance.
—Also, keep fighting for coverage if you’re denied — it’s amazing how many people don’t do this. Often if you fight long enough, they insurance companies find it easier to pay up than fight a lawsuit. There’s quite a bit of collective wisdom on Lymenet about how to deal with insurance companies.
—For disability, it is critical that you keep documentation of everything; that you are specific about your FUNCTIONAL impairments. It’s depressing and time consuming to do this, but it’s necessary. If you’re early in the disease, still do this — you may recover beautifully and never have to apply for disability, but you don’t want to try to start putting together all this information AFTER you’re really sick and your brain is fried. Here’s a link with some useful info about handling disability insurance:
http://flash.lymenet.org/ubb/Forum1/HTML/027533.html
Income Effect: Lyme can wreak economic havoc on your economic situation. Suggestion: Cut down on expenses as much as possible now, and put away every dime you can.
You can party when this is over, but you may need that latte money for your doctor, your meds, or your rent. As for people who've already hit the end of their financial ropes, there but for extraordinary good fortune go all of us. Some help is available through community services and churches -- somewhere on Lymenet in General, Rita did a great post on this.
--This is one of the reasons I'm such a fanatic about promoting reforms like the OPMC bill--if only diagnosis good treatment were readily available and affordable, so many lives would be less damaged in so many ways.
-Minoucat
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