Month Four of IV Rocephin

I'm into Month Four of my IV Rocephin antibiotics. The good news is that I've noticed some  symptoms have really improved from four months ago - mostly with the severity of my nerve pain. I'm also noticing that my word recall is getting better, though I still suffer from "Brain Fog", it's just not AS bad as it was a year ago! I can fill out forms on my own more and more without having my daughter come over to help me.

I seem to be sleeping better - instead of either 14 hours a day or some months where I couldn't sleep more than 4 hours a night - it seems more regulated now.

My legs are not as weak as they were, although I still have ups and downs. Some days I can go out with my cane, other days I still have to use Pink Floyd (my pink walker!)

Unfortunately I had a recent herx when I went to double my Tindamax though. Am pulsing Tindamax 2 weeks on, and 2 weeks off. I'd only been taking one a day (500 mg) and my LLMD wanted me to double that. Within a day of taking TWO pills per day, I began to get mind crushing migraines in my skull and I was incapacitated for days. It was awful. I knew it was a Herx when the second night, my fevers returned (100.5) and I just felt so crappy. I stopped taking the Tindamax and the migraines are started to ease up. I'd had a migraine for 5 days at that point. It was so bad, that I couldn't even push my glasses up on my head - within seconds, I would feel pain from the slight pressure of the glasses on my head! So, I'm going to give my body a chance to recover from this and will try again in 2 weeks - this time, will just take a dose and a half to see what happens.

I can't believe I'm coming up on my two year anniversary of Lyme Disease in January. So hard to comprehend that the life I once knew and completely took for granted, is no longer. Yes, I tell myself that I will get my life back, but more and more, I'm starting to realize that it will never be the same. I don't even know if I can get back into the career that I spent years in school for, tons of money in student loans, absolutely loved with a passion. . . it's hard to say if I'll ever be able to do that again.

Looking to my future that is completely unknown and uncertain is a scary thing, but I'm going to remain optimistic and just be open to what life has in store for me. As I recently posted, I'm seeing the light at the end of the tunnel, and for once, it's not a train! :)
XXOO

Quick Update

Well, I'm into month THREE of my IV Rocephin antibiotic treatments (3 times a week at the doctors office) and am happy to report that my severe peripheral neuropathy seems to be better. I am no longer at a pain scale of a TEN - more like an intermittent 4 to 7 depending on the day. Trust me, this is a HUGE improvement from where I was. I am no longer shopping for wheelchairs - am still using my walker and cane, but my legs DO feel stronger than they were before I started the IV Rocephin. Unfortunately I still have many of the other symptoms (joint pain, bone pain, extreme light sensitivity, brain fog, etc. etc.) but when you've been so sick and you're ready to call 911 because you're so incredibly sick, that ANY improvement feels like a miracle! :) I know I'm impatient and it's hard because just when I feel like I'm turning a corner, I will "backslide" a bit and have a bad week of symptoms.  Then I start worrying that I will go back to where I was, and I just have to remind myself to be patient and know that I'm doing everything I can to help heal my body. Once again, Lyme has proven to be one of the biggest challenges I've ever faced and I know it's so hard for my non-Lyme friends to understand what it's like. My best friend had Lyme before I got sick and I had absolutely NO idea what she was going thru until it happened to me. Anyway, I'm still plugging along, still trying to stay sane and positive and just hoping, HOPING, that one day this will all be a distant memory. Am so grateful for the support groups I'm a part of and also grateful to those of my non-Lyme friends who have stuck with me through this.

Lyme Disease Detox

(I'm reposting this from the original site which is located at the end of the article. I thought it had some great info on the importance of detoxing from toxic endotoxins!) -B

Lyme Disease Detox

 Part of the “domino effect” with an infection by a pathogen is that they will tend to make the host’s body environment more and more hospitable for them as part of the infection process and less and less so for the host (you). Therefore, it is found that many pathogenic microorganisms emit toxins (called “exotoxins”) that have a negative and damaging effect on cells, tissues and various systems in the host body and can even induce disease on their own.

Additionally, some of these microorganisms will also release damaging toxins when they are killed (lysed) which are called “endotoxins”. The Lyme endotoxins. It has been found its toxins are particularly neurotoxic (affecting the nervous system) as well as to joints, muscles, organs, etc. Therefore a large measure of the debilitating aspect of those suffering from Lyme infection is the effect of the constant toxic release by the bacteria. It is like having a picc-line with a constant feed of these toxins into the host.

As we will see later in the toxin released by the Bb is very neuro-toxic, it also inhibits the immune and causes inflammation, which is much of the body pains experienced, but also has an enzyme that inhibits the neurotransmitter, acetylcholine, which contributes to the cognitive issues, “brain fog”, etc.

Moreover, much of the degree of discomfort felt during a “Herxheimer reaction”, also called “die-off effect”, is the endotoxins expelled when the bacterium is killed by an effective agent and/or immune cells.

In other words, when an effective protocol is used to begin to kill the offending microbes, part of their survival pattern is to expel more toxins as they die, apparently to try and support those left behind. To the host (you), the toxins can be too much for an insufficient liver and kidneys to handle effectively and the material backs up in the blood and creates the feeling of being ill and uncomfortable.

There is whole myriad of phenomena that can be seen then from nausea, to malaise, to headaches, to diarrhea, to exhaustion, to pronounced body odor, to emotional feelings like panic, anxiety, anger, despair, grief, to flaring of symptoms in general. Another characteristic of the pathogenic toxification is that it also impacts the hosts eliminative channels and functions. It makes sense in terms of an Borrelia b. is particularly known for its release of exo- andCharacteristics of the Lyme Borrellia Bacteria, the insidious survival evolution on the part of the microorganism, for deficient elimination means the host will be further “backed up” or “loaded” with toxic material, which in turn effects the immune efficiency, and ‘round it goes..

Consequently, much of the common problems seen with Lyme-sufferers – affected adrenals, thyroid and other glands, hormonal balance and endocrine system in general, digestive tract, eliminative channels (liver, kidneys, etc.), lymph system, nervous system, cognitive functions, heart and circulatory system (including blood thickened by formation of fibrin), inflammation, etc., etc. –are exacerbated by the toxic material.

In a snowballing effect, with impaired elimination the body “backs up” with the toxic load mounting and creating that much more of a hospitable environment for them. One where there is increasing acidity (lower pH), lowered oxygen, lowered circulation, impaired functions, impaired ability to rest and rejuvenate, impaired immune function and increasingly impaired vitality overall.

While the toxin-releasing characteristic of the bacteria’s survival actions cannot be prevented, knowing the mechanics and characteristic of it allows being able to act to mitigate the effect. It has been seen repeatedly in the extensive field applications of the Protocol that where measures taken to assist the body in detoxifying on an ongoing basis there has been less Herx-related discomfort, greater ease in applying the Protocol in general, boost to the body’s infection-fighting and healing systems and greater gains in a shorter period of time.

What greatly helps with this is to help the body usher toxic material out. Eating well and drinking lots of pure water is a significant ongoing part of this.

 Key aids for this include:   

Barley greens (detoxifies, alkalizes, clears and builds blood, heals the liver, boosts the body and the immune)
Fulvic Acid (changes toxic material and metals to processible forms, boosts the entire body and immune)
Diatomaceous Earth (detoxifies toxins, chemicals, metals, provides minerals and natural silica, kills parasites and cleans intestinal tract)
French Green Clay (detoxifies toxins, chemicals, metals even radiation and provides minerals)
Activated Charcoal (adsorbs many times its weight in toxins, chemicals, metals and poisons)
Miracle II Neutralizer & Soap (detoxifies/neutralizes toxins, chemicals, metals, cleanses the body, improves cellular function, alkalizes, oxygenates and thus provides antimicrobial/antifungal effects.)
Extreme Liver Support (helps the liver and body to detoxify toxins out of the body)
Probiotics/Enzymes (improves digestive tract and liver, breaks down foreign materials and toxins)
Baths/saunas (raising body temperature particularly to perspiring)

Go here to view the article on my website or simply learn more about lyme disease

http://www.lymediseaseanswers.com/lyme-disease-detox/

A lymie getting well:)

http://www.lymediseaseanswers.com

MRI Results

Well I FINALLY got the results back from the neurologist office and my MRI results are normal. I guess I should be happy about that - really! But I guess a small part of me was hoping they would FIND something that could be easily FIXED and I could get my life back! Apparently Lyme spirochetes are tricky little buggers and can cause all sorts of neurological problems that never show up on an MRI. The good part is that after 2 months of IV Rocephin antibiotics, my nerve pain has gone down from a TEN to about a 5 (sometimes an 8 intermittently but then it goes away). My leg weakness is SLIGHTLY improved I think - so since I"m showing progress, my Lyme doctor is going to continue my IV abx treatments for one more month.

I'll be honest, I WAS looking forward to a break from having to go the doctor's office 3 days a week and get an IV, but if I'm showing signs of improvement then I want to do all that I can to keep this going. At the time I started my IV treatments - I was THIS close to being in a wheelchair, and although I still have to use my walker (Pink Floyd), I'm using my cane more and more when I can. So although I'm not BETTER, I am improved. So I'll take what I can get! :)

Brain MRI tonight

Well, I just had my first Brain MRI (with dye) - it was 45 minutes of having to stay COMPLETELY STILL otherwise they have to start over and they don't like to do that! They asked ahead of time if I was claustrophobic and I am. So they called in some Ativan to my pharmacy to take an hour before the procedure. Sooooo glad I did, because all afternoon, my anxiety was getting higher and higher and I couldn't eat because I thought I would throw up from my nerves. I think I was worried about the brain dye they have to inject. Thankfully I had a nighttime appt (8 pm at the hospital) so Jenni and Greg took me. It was comforting having them there with me. I'm so glad it's now OVER! Hopefully will get results by end of this week by my neurologist. Crossing fingers!

THE LYME DISEASE CONTROVERSY

The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.

Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.

In July 2009, the IDSA held a hearing to review recommendations and critiques of the 2006 Lyme Disease IDSA treatment guidelines by a range of speakers from the United States.  The comments of those speakers can be found at the IDSA website.

Article from The Columbia University Medical Center - Lyme Research Department 

http://www.columbia-lyme.org/patients/controversies.html

Upcoming LYME WALK 2011 in San Diego! Mark your Calendars!

YOU’RE INVITED!

To Take the Bite Out of LYME!

          PLEASE Support the many Californians stricken with Lyme Disease

5th ANNUAL SAN DIEGO LYME DISEASE AWARENESS WALK

  Live TV coverage        

with Brooke Landau of 

Channel 6

WHEN:  Saturday, October 15, 2011, 8:00-11:00 a.m.

WHERE:  Embarcadero Marina Park North (behind Seaport Village)

·      The walk is an easy two miles along the beautiful San Diego Bay.

·      Registration in not required to attend.

·      FREE Games and Entertainment

·      FREE Lyme disease information brochures, balloons, bottled water   

• Lyme Disease shirts and wristbands will be for sale
• Parking available at meters in the park at the end of Kettner Blvd., or Free for 2 hours at Seaport Village with validation
• Raise money for the California Lyme Disease Association by creating a Lyme Walk team or joining one at http://www.firstgiving.com/CALDAlymewalk/sandiego  or  www.firstgiving.com/caldalymewalk   This is completely optional and not required

Directions

North on I-5 to Downtown
Take I-5 North and exit 6th Avenue. Left on 6th. Turn right on Ash Street. Turn left on Kettner which ends at Seaport Village and turn right to park at meters in the park.
South on I-5 to Downtown
Take I-5 to Front Street exit. Turn right on Ash Street. Turn left on o Kettner Blvd and turn right to park at meters in the park
South on 163 to Downtown
Take 163 South to Ash Street. Turn left on Kettner Blvd and turn right to park at meters in the park

For more Lyme Walk information contact maritza@plant-people.com

For information about Lyme disease visit California Lyme Disease Association at  www.lymedisease.org

Avoiding Dairy? Try Coconut Yogurt and Creamers!

Because some of my medications don't react well with dairy products, it was just easier to find alternatives a while back, so I didn't have to "wait a few hours" between taking anything with calcium and my meds. I tried some soy products for a while, but when I discovered Coconut products by So Delicious, I have been using them ever since! They are yummy!

The "So Delicious" brand makes different flavored yogurts, along with Coffee Creamer (which I use daily) and some other products which I have yet to try. I usually buy mine at Henry's (now known as Sprouts) because they aren't yet available at larger stores like Vons.

Another great use for the flavored Coconut yogurts, is that I put them in my magical green smoothies to make them more creamy (if I don't have avocados on hand) The trick with all green smoothies is to provide enough "sweetness" so they taste good and the flavored yogurts do the trick. (I also use iced berry flavored herbal teas to mix in for the liquid part and it adds a GREAT fruit flavor without the sugar if you're like me and trying to keep your fruit to a minimum. :)

Mile Marker 16?

Well, I've done about 16 IV antibiotic transfusions now - with about 8 more to go! I'm on the home stretch! I think I WAS starting to feel a bit better, but unfortunately I recently had a bit of a set back due to a death in the family and other major events all happening within a short time. It really is true what they say about stress being such a major hindrance to healing - I felt many of my symptoms returning and flaring up with a vengeance. My blood pressure was sky rocketing (150 over 100) and I wasn't sleeping well at all for about 2 weeks. I wasn't in good shape at all. Now that things are starting to calm down a bit, I'm working very hard at keeping my perspective about things and trying to keep my body from getting that stressed out again. Am back on schedule with my IV treatments so I'm crossing my fingers that I will continue to improve.

Someone recently sent me a link to a woman's story about her own challenges with Lyme Disease called Wild Condor. It's quite an intense story but I was most impressed with her parting remarks which I found to be a wonderful reminder to all of us with chronic illnesses.

She wrote:
"No matter how you feel, go out and live each day as best you can! Exercise is essential to getting better. You have to start slow, and rest in between, but it makes a huge difference in your stamina and immune function. Midway through my illness, I realized that I could be sick at home, or sick out having fun, either way, you have to go on! Going on with your life as planned is important people. Get busy living, or get busy dying! Do not forget, you are still alive, and you still can do it if you try hard enough. Do not give in or give up, it just isn't part of the master plan. Climb the mountains! The beauty of the sunrise on the other side is well worth the journey. Remember, if you have hope, you have everything. Be a warrior!!" - From Wild Condor - http://www.wildcondor.com/lyme
.html

IV Treatments continue!

Well, I have now completed 9 IV Rocephin antibiotic treatments now and have 15 to go. I am also on oral Azithromycin once a day (had to cut back from 2 a day, it seemed to be making my neuropathic pain worse). My fellow Lyme friend Robin had a GREAT idea. She posts her IV treatments like "Mile Markers" on her FaceBook page so that her non Lyme friends can cheer her on as if she were running a marathon! Since both of us used to be very active and I had JUST started training for a marathon when I suddenly got sick 20 months ago, I love this idea and so do my friends.

It's nice to be "cheered on" whenever I get closer to the finish line which in this case will be the end of my 2 month IV Rocephin treatment. (I go 3 times a week) Overall, I've done okay (so far!) with the Rocephin treatments, I would say the first two weeks were the hardest, but it seems as though my body is adjusting.

However, I'm about to start Tindamax, a "cyst buster" (like Flagyl, but it's supposedly easier on your body) and I'm just hoping that I don't have severe Herxes like I did with the Flagyl. Unfortunately Tindamax is RIDICULOUSLY expensive - it costs $620 a month at CVS! Yes, that is NOT a typo!

But luckily I had a good friend give me a months worth that she had some extra. Someone is getting a LOT of money at these drug companies.
The doctors office I go to for my IV abx treatments is the same as some of my Lyme friends so I almost look forward to going since I know I'll get to hang out with them while we all get our IV infusions! It really doesn't take that long - the whole IV drip is maybe a half hour long.
Am meeting with the Neurologist (FINALLY!) on Tuesday, so I'm hoping to get some answers about my severe peripheral neuropathy which is causing such severe pain in my arms and legs. Joint pain continues although some days are better than others. Still tired all the time, but I'm eating better than I ever have before and have been really good about sticking to my "Magical Green Smoothies" every day which as I said before, have made a HUGE difference in my digestive system. My tummy is MUCH happier!

Finally, I wanted to add something that I learned from, who else, Dr. OZ! recently. I can't believe I never knew this. Apparently if you take Calcium at the same time as certain medications (thyroid is one) AND even multi-vitamins or probiotics, it basically WIPES them out. I'd always wondered why the good Multi-Vitamins had very little Calcium in them (like 1%) and now I know why! So all this time, I've been adding my Multi-Vitamin Formula in my green smoothie ALONG with my Calcium/Magnesium mix which apparently is a big No No! Now I take my Calcium right before bed which can help you sleep better anyway, so I learned a big lesson from that. My father takes Dilantin, an anti-seizure medicine and had been taking it with Orange Juice fortified with CALCIUM and Dilantin is one drug that you aren't supposed to mix with Calcium. So I made sure to send him the article about it. Hope everyone is doing well, and hope I can post again soon!
Big hugs to all!

One IV Treatment down! 23 to go!

Back from Rocephin IV treatment #1. Now just 23 to go in the next 8 weeks! They also put 2 gms of Magnesium in the bag as well which made me a bit sleepy but felt really "calm". The nurse, Lee, was AMAZING. I didn't even feel the needle go in. Considering that she will do this another 23 times to me, this is a good thing. ;) I also was surrounded by other Lyme patients in the "IV Lounge"! (Two of whom I know!)  Am not feeling too great today, can't believe I still have TWO MRI's to get through this afternoon! I wish I had my mom here to drive me, but she doesn't arrive until tomorrow. But I'm going to keep pushing on and look forward to relaxing tonight and doing nothing! Pain is still unbelievable - I hope my Primary makes up his mind SOON about what to do, but I guess he's waiting for my MRI results. Wish me luck!

Starting IV Rocephin Antibiotics tomorrow

Hi everyone, I haven't posted in a while because I've been having some pretty rough symptoms from Lyme. My nerve pain has gotten really bad and I'm having to deal with PAIN every day. Joint pain has increased too, not sure if it's from a change in my abx (I've also started taking Azithromycin 2 x a day). Since my last post, I changed LLMDs and am now about to start a much more aggressive treatment plan. My legs have become so weak and painful that I use my little pink walker more as a wheelchair and less as a walker. I feel like I'm dangerously close to having to use a wheelchair every day that I'm more than happy to try a more aggressive antibiotic treatment using IV versus orals. I've been on various oral antibiotics for a year now and have only been getting progressively worse. Sorry my post isn't very positive today - I always try and stay really positive but the pain has just been wearing me down. I'm also getting a spinal MRI tomorrow as well, (ordered by my Primary) so we'll see what that shows. Lots of stuff going on right now and I'm crossing my fingers that my next post will be to tell you that I'm doing MUCH BETTER! Wish me luck!

Daily Magnesium, Calcium and Vitamin D3 supplement that I take

Hi all! If you've been reading my blog, you'll know that I'm really into the Green Smoothie detox diet right now. I have several Green Smoothie shakes per day and at night, I usually eat roasted vegetables. And then every few nights, I'll add some ground turkey meat and make a sort of "Vegetable Hash" with it. It's quite yummy! 


I gained some weight when I went on Neurontin last year for severe nerve pain in my arms and legs and have been fighting to get the weight off ever since!


Pretty tough when you can't just go out and exercise like most people! So I've had to be pretty restrictive on this "eating plan" but the weight IS coming off and my digestive system has never been happier! I started this in February as a 3 week detox diet, but was so pleased with how my stomach felt, (after months of being on antibiotics, anti-parasitic drugs, neuropathy meds, etc.) that I sort of modified it to stay on it until I lose all the unwanted pounds. 


So recently in a Lyme forum, we were talking about Magnesium and one person commented that it was good for Migraines. I suddenly realized that I hadn't had a Migraine in MONTHS (knock on wood, quickly!) and thought about the fact that I'd been using a liquid Magnesium supplement in my Green Drinks every day since February. Hmmm - could be a connection - who knows? I used to get BAD migraines like clockwork - every single month and it's now been 4 months with NO migraine. Someone asked me what I used and I wrote the following in my post:

******************************

Hi XXXXXX! I'm happy to help. I used to use a brand from Henry's which was really good, but just got too expensive with all the other tons of supplements, 50$ probiotics every month, RX's, etc. - I'm sure you know what it's like! Anyway, I found this brand at Costco of all places: It's called "Liquid Reviva" High Absorption Calcium Citrate.

It's 1000 mg Calcium with Vitamin D3 and Magnesium. It comes in different flavors (mine is "Smooth Blueberry" and it's great if you use it in green smoothies like I do. It also says you can add it to yogurt, oatmeal, milk, protein shakes, etc.

It has 400 mg of Magnesium which is 100% of the daily recommended value.

Calcium is 100% and Vitamin D3 is 250%. It's only 2 tbsp a day too! The cost is only $11.99 at Costco and it lasts me a month or so I think? Pretty good value! They also make a Liquid Reviva "High Potency MultiVitamin with 500 mg Vitamin C, 800 IU Vitamin D3, Super Fruits, Antioxidants and over 50 Nutrients. And it's Sugar Free! Tropical Burst is the flavor I get. Again, I get it at Costco and I think it's $11.99 too? Not positive on that one - might be a little more.

Hope that helps! I think I'm going to update that on my blog - thanks for bringing that up! Hope you're having a good evening!

*********************

Soon I'll post another updated list of everything I put into my Magical Green Smoothies - they truly are TASTY (who knew?!) and I put a TON of fresh organic green veggies in each day in addition to all the supplements I USED to take in pill form. Honestly, I've cut down taking about 20 pills per day by getting them in liquid or capsule form (which I cut open and add them in the blender) and that is a HUGE plus!

One final thing. Lots of people ask me what type of blender I have. Well, as much as I would LOVE to have the Vitamix or Blendtec (one day when I have the money!) I am using the same Osterizer Blender that I've owned for over 10 years and probably cost me $30 or so.

It crushes frozen fruit, ice, EVERYTHING (again, knock on wood! ha ha!) and has done JUST fine! Just don't forget to take out things like metal teaspoons when you run the blender - they don't seem to like that!

Best of Health to everyone!

-B

My latest find! A Mattress Protector for Night Sweats!

Hi all, some of you may know that I (with the help of my wonderful father!) recently purchased a heavenly new Queen size, plush pillow-top mattress which I am in love with! I had been sleeping on an air mattress for a while now (Don't ask - long story!) and it kept deflating over time whereby I would wake up in the morning unable to move because of the PAIN all over my body! I have apparently developed Fibromyalgia in the last few months on top of Lyme (Going on 16 months now since I got sick) and I'm so sick of being in pain all the time. The air bed had to go. My father was generous enough to offer to buy me a new mattress (If interested, it's a Queen Size Sealy Posturepedic Plush Pillowtop that I bought at SleepTrain) and it was delivered a few days ago.

While we were at the store, they had these little jars of blue liquid on the counter which were covered with a white fabric on the top and fastened with a rubber band. I asked what they were, and the very nice saleslady (unlike the first sleazy sales guy who I couldn't stand!) told me that they were demos of a mattress protector and the blue liquid was Windex. She said I could turn the jar upside down and the Windex wouldn't come through. Sure enough, she was right! I found out that it's called a Premium Mattress Protector made by Protect-A-Bed.

Since I get the dreaded NIGHT SWEATS from time to time and especially when I'm herxing on a new antibiotic or medication (I will wake up and be drenched in my sheets - ughhh!) I thought this would be PERFECT to protect my dreamy new mattress! It's all fabric blend so don't think that it's of those plastic ones that kids have when they're young and prone to wetting the bed! LOL! This one is very soft and cottony. And amazingly, it doesn't allow ANY moisture through! You can also machine wash it whenever you like.

Anyway - just thought I would share my story - for anyone who gets these dreaded Night Sweats - you know what I'm talking about!

Article by a Lyme MD about Immune System and Antibiotics

This article is written by a lyme doctor in maryland who frequently writes articles on his blog. Lots of great stuff in his past archives if you want to read more! the site is: 
LYME MD BLOG

Immune dysfunction and antibiotics

(Written April 30th, 2011) by Lyme MD

Clongen reports many unusual organisms seen swimming around in a drop of blood taken from many of the most ill, chronically afflicted patients. Why? I believe these patients are immunologically compromised. People of theILADS/chronic Lyme disease community, have long claimed that Lyme disease infection (Borrelia spirochetes) isimmunosupressive: this, it is argued, why co-infections, erstwhile opportunists, are able to easily grab a foothold. As one of my patients pointed out to me, there exists research showing a mechanism by which this might occur. Wooten and others have shown that Borrelia infection can lower a specific cytokine ( a mediator of normal immune function), IL 10. This weakens the ability of the immune system to fight or contain certain infections. If one microbe can do this, it is plausible that many others can do so as well, through various mechanisms. For example, XRMV, has been linked to Chronic Fatigue Syndrome. Not CFS. The proper nomenclature is CFIDS (Chronic Fatigue Immunodeficiency Syndrome) because the syndrome is believed to be associated with a yet understood, dysfunction within the immune system

The epidemic of CFS started suddenly in the mid 1980s. The Medical community at first thought it might be caused by Epstein Barr Virus, but ultimately decided the cause was unknown. The CDC was concerned about this new epidemic because they developed a case definition for the disorder, first in 1988, then revised in 1994.

Please visit the CDC website and print out their Case definition of CFS. Compare this to the ILADS published expanded definition of chronic Lyme disease. They match, nearly to a T.

Fibromyalgia arrived on the scene around the same time. For the longest time, most physicians refused to consider it a "real disease." Ultimately, The American Academy ofRheumatology published a case definition, in essence, pronouncing Fibromyalgia a genuine disease.

Fibromyalgia shares many features with chronic Lyme disease and CFS. Even the terminology sounds familiar. Instead of having Brain fog - Patients have "fibro-fog."

Let me turn the table a bit more. Pain - and I will introduce a new variable, Migraines: why does it hurt. Pain occurs when sensory fibers are stimulated, carrying a message to the brain/pain center causing the subjective feeling of pain.

Why Migraines? At first doctors thought it was a vascular disorder caused by constriction and dilation of blood vessels. Then, it was understood to be a brain disorder. Abnormal brain function can be imaged associated with migraines. Now - Botox injections can treat migraines. What is going on here?

Botox paralyzes nerves, relaxes muscles. This decompresses some nerves.

Inflamed, architecturally changed muscle tissue, impinges on nerves which too may be damaged and inflamed, perhaps exacerbated by autoimmune damage of tissues.

A lot of patients with migraines also have fibromyalgia, associated with tight muscles in the back of the neck. It is now understood that pressure applied to tiny nerve fibers, compressed by local abnormal muscles initiates the cascade. Messages are sent to the brain leading to abnormal brain function and then changes in blood vessels. The vessels constrict and then dilate, pressing on nerves. This is why migraines have a pounding quality. The vessels dilate more when the heart contracts. Fibro muscles irritate nerves but in a different way. The same can be said for Lyme patients.

Stardard medical thinking holds that painful conditions likefibro and irritable bowel syndrome are due to overly sensitive nerves. This thinking seems to have a psycho-somatic slant. These sorts of biases need to be replaced with a better understanding of the science and a respect for the suffering of the patients, rather than blaming the patient - as if in some way, the patient is responsible for the illness.

This thinking is fueled by observations that certain illnesses are more prevalent in women - the implication: women are prone to hysteria and psycho-somatic problems. In fact women have more robust immune responses than men and are twice as likely to experience autoimmune disease. This is where we need to look.

Let's go back to the first paragraph. Sick patient have germs in the blood; parasites bacteria, unknowns. The immune system is to some measure broken. These germs should be contained in a box, somewhere else, by a competent immune system.

Perhaps an initial infection: Lyme, Mycoplasm or something else, initiates the process seen in our: chronic Lyme, CFS,fibro, chronic pain syndromes, migraine, IBS, chronic pelvic pain, IC and other patients. The smart, offending germs are in some way programmed to disrupt normal immunological functions(as is known to be the case with Borrelia) causing a wide range of downstream sequelae.

Some antidepressants, Cymbalta, Elavil disrupt the neuronal messages sent to the pain center, or in some way alter the perception of pain in the brain. The same is true foranticonvulsants like Neurontin, Lyrica. They may help some. But they do not get at the root of the cause.

Sometimes - antimicrobials, of various sorts, (fromdoxycycline to Tindamax to Malarone) work much better for these patients.

Immune compromise, mediated by one infection ( not to discount the role of genetics, stress and other factors) can "activate" heretofore quiescent germs. This explains why patients relapsing with Lyme often experience a rip-roaring relapse of a previously controlled co-infections, like Babesia.

The process may be associated with multiple breakdowns of normal imune function. For example: cytokines becomedysregulated, T cell and B cells malfunction, autoantibodiesare made. Autoantibodies, the cause of autoimmune disorders, play a huge role in the disease complex.

Bottom line: sometimes it is best not to worry what it is: are bands present or not? Is it fibro or CFS. Not to say you should stop trying to figuring it out.

It comes down to this: either the illness responds to anti-microbial agent or it doesn't.

This begs the question: which antibiotics/anti-malarials or anti-parastic agents. If you don't pick the right ones you won't know if the illness is anti-microbial responsive.

That's the tricky part. That's what you pay us to figure out.

How to cope with Chronic Illness or Help someone you know

 (I sent this email out earlier to all my Friends and Family. . . )

Hi all!

I wanted to share this wonderful essay I came across, about coping with a Chronic Illness. Whether you are ill or know someone who is, it is a must read. Since I became sick with Lyme Disease, it has completely changed my world. But this essay is WONDERFUL in understanding ANYONE who has had to deal with a Chronic Illness and if you know someone who is dealing with this right now, I think it will help to answer some questions you may have. 

In my case, since being diagnosed with Lyme, there has been a steep learning curve as to how to adjust to this new surreal experience. At times, it has been really challenging because I can't work anymore or do things I used to love, like hiking or simply going out with my friends. It can be very isolating because nothing in life prepares one for something like this and psychologically it can take its toll on the patient and also the family who takes care of them. 

Anyway, I know it's a bit long, but if you're interested, I hope you will read it. (P.S. Feel free to pass this along to others who you think may benefit!) 

Much Love, 

Bonni 

COPING WITH CHRONIC ILLNESS 

  

(This is adapted from the book After The Diagnosis by Dr. JoAnn LeMaistre.

Copyright Ó 1985, 1993, and 1999 by JoAnn LeMaistre.)

JoAnn Le Maistre received her Ph.D. in clinical psychology, delivered a daughter, and learned she had multiple sclerosis all within the period of a few months. Dr. LeMaistre has developed a successful practice counseling patients and their families. She is a sought-after speaker, lecturer, and teacher. Her books, After The Diagnosis, and the hardbound edition, Beyond Rage, have helped thousands of chronic illness patients, their families, and health care providers to cope effectively. Her daughter has now  

graduated from college. And Dr. LeMaistre has learned to live a full life, in spite of the handicaps of her MS. She is an inspirational example of what it means to be able-hearted when you can no longer be able-bodied. 

 Traditionally, the experience of serious illness has been approached in two ways: (1) a gloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyanna approach that denies altogether that there has been a real trauma. Both of these perspectives distort and disguise the reality of chronic illness.

The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the "miracle" of modern medicine, and somehow the lack of recovery is often perceived as the patient's fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, "Stop complaining. You simply must adjust." Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself. Sadly, the word "adjust" too often means "resign," "settle for less than a desirable existence," and "surrender." At its worst, "adjust" is just another way of saying "You are now a nonperson without the right to experience strong passions, desires, or fierce and unyielding hope." All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.

The Pollyanna approach is typified by -- and fueled by -- personal stories or testimonials of complete recovery from extreme illness or disabling conditions. These stories tug at the heartstrings and catch the fancy of all who read them. Besides creating false hope by overplaying the likelihood of complete recovery, these stories consistently underplay the sadness and feelings of worthlessness that are part of the legacy of any physical or emotional trauma.

Sometimes, it is useful in social situations to present yourself as a Pollyanna. When meeting new people and situations, it may be an advantage for you to let others think you have mastered your disease. The anxiety of other people is reduced by not having to confront illness. The danger is that this Pollyanna image may create a barrier between you and the people who can offer real help. The resignation viewpoint holds little hope; the Pollyanna viewpoint holds little reality.

The approach I propose took shape as my own understanding developed. My experience as a patient, observer, and psychotherapist has allowed me to see the many ways in which people creatively adapt and use their individual internal powers of wholeness (the sense of being emotionally intact) to reduce the destructive effects of severe physical limitations and accompanying depression, rage, and fear. The wellness approach I present stresses both the subjective experiences of loss and your responsibility for looking outward to reestablish quality in your life.

Central to wellness is the concept of adaptation -- the flexible, creative use of resources to maximize your choices and experiences of mastery. This is the key to creating and sustaining a sense of inner tranquility in the face of difficult realities. There is no need to deny grim facts of existence or to pretend to others that all is well when inside there is little except torment. To be psychologically well while physically sick involves the belief that your personal worth transcends physical limitations; you need positive self-esteem for true adaptation. This belief in your self-worth rarely emerges until what you have lost and grieved for stands second in importance to precious moments of inner peace and joy.

Each stage in the progress toward wellness involves loss, grief, and acknowledgment of internal pain. During difficult times, emotional pain can engulf your life. All sense of time and proportion fade. The scope and intensity of the psychological pain fluctuates day to day. At times, it carries you closer to invaluable inner resources. At times, like a dangerous undertow, this pain drags you far from your recognizable self. It may seem that you have no reason for living or that you are living only to experience pain. Even so, the reason for living is life. The incentive for becoming psychologically well is the potential for the future.

Illness is an emotionally as well as physically depriving experience. It can do lasting harm by threatening a person's sense of well-being, competence, and feelings of productivity. At their worst, emotional reactions to illness may culminate in the feeling that life is meaningless. I do not share this belief; but I recognize how stress can make you feel this way.

Illness is a process, and like all processes it has different stages with different characteristics. We will discuss the stages below. The stages can occur in varying orders; often they are repeated. If a sick person lacks emotional support or a necessary feistiness, the process can stagnate, and one may be mired in one or another phase of the emotional transitions taking place. The emotional process begun by illness is a highly varied and individual one. Not everyone gets bogged down. Not everyone experiences all the stages discussed in the following sections. The stages are not part of a once-through program, but are repeated as symptoms recur or losses come about.

The level of adaptation is an upward spiral in which coping mechanisms, learned one at a time, can be combined with strategies learned at other times to make each bout of illness less emotionally upheaving.

How people react to chronic illness depends on many conditions. Three deserve note. The first is the severity of the illness. The very sick must put all their energy into healing and may not have the luxury of energy left over for emotional growth.

The second is the social support available. If you are willing to ask for help and you have a wide support network, you'll have an easier time than if you are isolated.

The third condition is the pre-illness personality of the person. If you have always been pretty resilient, you are likely to have resilience in coping with the illness. (YES!) 

The emotional trauma of chronic physical illness is caused by loss of a valued level of functioning, such as the ability to drive or dance, for example. The chronically ill person not only suffers the loss of immediate competency but is deprived of an expectable future. No one's future is ever guaranteed, but most people become accustomed to looking at the odds; if I invest my energies in a particular direction, I can be reasonably certain I'll reach a desired goal in that direction. When illness intervenes, all past efforts may seem irrelevant -- and in fact they may be.

In the face of such losses, to experience fear, anger, depression, and anxiety is normal. It would be abnormal to deny that your health and your life had changed for the worse. Serious emotional difficulties are more often the lot of people who do not acknowledge the emotional stress they feel and thereby bottle up depression or anxiety until these feelings are so powerful they break through their defenses. By the time an emotion becomes this powerful, it is much more difficult to survive its impact without severe scarring.

Is there anything that can help overcome the displacement and depression caused by physical loss and the loss of goals and dreams? I think the answer is an unqualified YES!

Goal-oriented striving, any experience of mastery, any outside acknowledgment of competence, a well-tuned sense of humor, any experience of joy, and the constant striving toward an inner state of tranquility are the aids that help overcome the displacement and depression of chronic physical illness.

These aids are of critical importance in the stages of the ongoing emotional process. I identify these stages as crisis, isolation, anger, reconstruction, intermittent depression, and renewal.

 These are good summary categories for the whirl of emotions triggered by illness and we will take up each stage in turn, although in the course of an individual illness they may not always proceed in this order.

CRISIS

In the crisis stage, the patient is seriously ill and very frightened. Both psychologically and physically he or she has a decreased ability to respond to others. The sick person's energies are directed inward toward healing, and controlling panic. The patient is often too sick to even be frightened. (So TRUE!) Events are often confused. Time is distorted. Disorientation is common. At these times we fall back on our innate biological ability to heal. The support network, on the other hand, is feeling a highly stressful increase in anxiety, especially as it must carry the full responsibility for arranging for medical care, covering finances, and seeing that children's lives, if children are involved, can go on with a minimum of disruption. The family's anxiety can be energizing. The family may feel a need, sometimes an obligation, to be highly supportive of the patient.

By and large, everyone responds well in a crisis. Everyone knows the patient is terribly ill. And they respond. Unfortunately, those most affected by the patient's illness do not always receive the support and help they need at this time.

Friends sometimes respond by showering the sick person with cards, flowers, and get-well-soon wishes. Unfortunately, much of this is misdirected. The very ill person often cannot appreciate these signs of concern and affection. Patients often feel burdened by all the thank-you notes they cannot send. Friends can often do more by helping the family and other members of the support network to deal with the medical system, the incoming phone calls, and to give direct support when it becomes clear that the idea of "get well soon" has no relevance to chronic illness.

During the crisis stage almost all of the patient's energy and attention are focused on responding to the physical onslaught of the illness.Surviving is the primary concern.

In addition, the patient and the family must cope with the fear of an unknown and unknowable future. It is all too clear that the comfortable patterns of the past have been shattered. It is not clear at all what may lie ahead. (Again, SO TRUE!) 

ISOLATION

In time, the acute nature of the illness may abate. But total recovery does not occur, and the illness persists. There is a dawning awareness of everyone's part that the situation has become a chronic one. There will be no full recovery. There is so much uncertainty about the future that the patient may not be able to sleep at night and may seem restless and distracted during the day. The lack of an expectable future constitutes a major assault on one's self-image.

The patient's anxiety often produces a stiffness or frozenness in dealings with others and oneself. There is a belief, usually partially justified, that no one can understand the devastation of the losses. Isolation most troubles patients who have been the most independent.

The family has often exhausted itself during the acute crisis stage. Family members may become aware that they are angry, fearful, and disgusted about the sick member's situation. Both patient and family members retreat into themselves and their thoughts, now haunted by the knowledge that life may never be the same.

Friends also tend to give out at this point -- the idea of chronic illness is really terrifying to most people. After an initial burst of energy, some friends may find it too overwhelming a personal struggle to continue having contact with either patient or family. Some patients have been devastated by an apparent lack of concern shown by people for whom they care. I say apparent because often failure to contact the patient means that friends may care but don't know how to act.

This leads to a thorny question. 

How comfortable are you in asking for help? What does it mean to you to have to ask for help?

These questions begin to surface during the isolation stage, but actually they are part of everyday living for most chronically ill people. To feel really comfortable allowing others to help you is an art that must be learned and practiced. It is difficult to understand that relying on other people when it is necessary does not indicate weakness or failure. One of the emotional barriers to asking for help is a strong feeling of guilt about having a disease that makes one need help. During the isolation stage, patients look inward and experience many negative feelings about themselves.

In the isolation stage open communications are vital. Blame must not play a part. Talking about feelings is very important. Communication and sharing are ways to break the isolation.

ANGER

The sick person has been suffering severe upset, terror, anxiety, and helplessness. Add to this the sense of injustice, unfairness, and senselessness of being struck down by a disease, and the result may be a rage reaction of tremendous proportions. Often the target of this rage is the patient himself or herself. The ultimate, most dangerous, expression of this rage at self is suicide. The commonly experienced feelings of despair may result in contemplation of suicide.

There are two reasons why the patient targets himself or herself for these feelings of anger and despair. First, it is almost impossible to be furious with fate; there is no external opponent. In order to provide some meaning for what has happened, many people irrationally conclude they have bought disease on themselves by being faulty or wicked in some way. It is difficult to keep clear that it is the disease that introduced the disruption into one's life.

Another reason for suicidal thoughts is that illness breeds a sense of helplessness. The chronic disease cannot be wished away. The disabilities are there to struggle with every day, and the threat of a major recurrence or increase in symptoms may be a constant anxiety tucked away not far from consciousness. With the feeling that the underlying problem cannot be solved and the belief that it is the patient's fault, many patients suffer intense unhappiness. Sadly, the patient's feeling of self-blame is greatly reinforced by society. Often families are unable to help because they are angry at the patient. The changes in their life style are directly attributed to the patient and not to the patient's illness. Even supposedly neutral medical personnel may be furious with the patient for having a chronic condition they cannot cure. This anger directed at the patient from all sides is psychologically understandable but it is very destructive.

The flirtation with suicide, the patient's worst hazard of the anger stage, is a statement of the extent of one's rage with oneself and with those one cares about.

Another serious problem of the anger stage is the strain on the family. Families who fare better during this stage understand that the sick person is not the same entity as the disease and they see that the whole family is in this predicament together and are committed to coming out of it as well as possible. Family members need to devise ways to nurture and adequately support each other in order to cope with both the anxiety and the practical life changes accompanying chronic illness.

Anger is the stage most hazardous to your emotional well-being. It is also where most people get trapped. Fear and anger are disruptive emotions egendered by a sense of loss of control. Take back control in small steps. The basic reasons for the anger, in most cases cannot be avoided. It does no good to assign blame. The response must become task-oriented. "Today I will walk the length of my room, or call a friend, or answer one inquiry." Striving toward a goal, even in small doses, is an antidote to anger. Patients, family, friends, and helpers should all focus on the strengths that remain, on the accomplishments that can still be achieved. This basic rule is a key to dealing with anger.

RECONSTRUCTION

The sick person may now be feeling much stronger physically or may have had enough time to begin mastering new living skills. Important decisions or new social contacts may be in the picture. What is common is a growing sense of safety based on new competencies. Moods are happier and the difficulties seem a bit further away. The sick person is learning the possibilities and limits of the new competencies. Friends are selected on how well they react to the fact of illness. The family establishes new routines -- or it dissolves.

What exactly has been reconstructed? Certainly it is not life like it was before. Instead, it is a reconstruction of the sense of oneself as a cohesive, intact entity. The reconstruction takes on many concrete aspects, such as the development of new skills, but the most important value is emotional. When a customary pattern of living has been shattered by illness, the patient fears that he or she is longer recognizable as a whole being. It is the reemergence of a positive self-image that constitutes reconstruction.

Often people do well for a few weeks and then are devastated by some incident. But each experience with trusting and succeeding is a building block for the next step of reconstruction.

INTERMITTENT DEPRESSION

Now that everything is looking brighter, everyone is tempted to relax and may, therefore, be caught off guard when a significant depression recurs. The elation associated with new skills can give way to new feelings of despair as the patient recalls how much simpler it was to do routine things the old, pre-illness way. Nostalgia and grief may combine to produce sadness and discouragement.

Many people know exactly when they expect to hit these rough spots. Medical appointments and anniversaries are notable examples. Seeing a doctor, who confirms your intuition that your condition is not improving or is worse, often leads to depression. So may the third anniversary of having to give up the car, the first anniversary of a divorce, the time of the year the physical problems first occurred -- the list is endless. It may be best to seek counseling during these difficult times as a way of shortening their duration and providing new understanding of what all the feelings of loss are attached to. New understanding brings new resilience; it does not make the losses go away.

Intermittent depressions seem to combine two feelings. One is the awareness of loss of function that occurs several times a day in the course of ordinary living. But clearly, an amputee does not become depressed each time there is a reminder of the inability to walk normally. There is a second element involved. If the awareness of loss arouses a distinct image of what life would be like if the amputation had not occurred, and if this fantasy has strong emotional meaning for the person, depression is very likely. This image of how you would be without the illness I call the phantom psyche.

 The phantom psyche is usually not far from consciousness. It is the self-punishing mechanism whereby the chronically ill person continually erodes his or her own self of self-worth and competence. "If only I didn't have this arthritis [or whatever illness] I could still be mountain-climbing [or whatever activity]." "If only" statements are the bread and butter of the phantom psyche. They contain harsh judgments of worthlessness. In a happier mood, you might experience the same feeling of loss, but say to yourself, "I really miss mountain climbing, but at least I can take a walk today."

When the phantom stalks, the soul is uneasy. Doctors and friends often mistake the desperate pain of knowing one's hopeful fantasies will not be realized for self-pity. "Just stop feeling sorry for yourself" so completely misses the point that it is tragic. It is very difficult to have a sense of self when you're depressed and are afraid that you'll never again be of value to yourself and others.

Self-esteem increases proportionately to successful experiences of independence and purpose, whether the success is remembering what time to take a certain medication or walking better after months of physical therapy. The phantom psyche -- those unrealistic expectations you have for yourself -- cannot compete with the heady gratification of hard-won success. If family, friends, and medical personnel can appreciate the triumph in being able to struggle, you feel even more triumphant. Well-wishers too often make the mistake of praising a sick person for progress without acknowledging how difficult is the ongoing battle against the inertia of chronic disease.

We all have periods when we feel overmatched and not up to the struggle. But as long as we pay attention to the struggle, we will get through the day. We flounder when we set unrealistic standards, or cannot grieve for what has been lost, or cannot start each day afresh. Depression can be tackled despite the physical complications that try to drag us down.

RENEWAL

The losses, and the sadness they cause, never go away entirely. There is a sense of lingering regret for all the capacities that have been lost. A person who has mastered the technique of using a wheelchair can feel very proud of this achievement and know full well that this device is essential for retaining an active life. But the person does not have to like it. It is not necessary to like or to resign yourself to the compromises you need to make to get on with living. It is only necessary to acknowledge that changes in life style and skills have to be made. Acknowledging that your skills are different from your preillness days is not the same as "adjusting" to illness. There is no surrender involved, only growth -- the creation of new options through new means.

The creation of renewal comes from the experiences that teach us not to waste the present on fearing the future.

The truly handicapped of the world are those who suffer from emotional limitations that make it impossible to use the capacities and controls they possess. If you have a chronic disease, you need not be emotionally handicapped if you continually strive to be able-hearted. Able-heartedness is within the grasp of all of us. I don't think of able-heartedness as a permanent, static state, however. Developing and maintaining this quality is a process that ebbs and flows, depending on how helpless you feel. Even if you feel in the grip of hopelessness, you are behaving in an able-hearted way by any expression of interest in another. Shared interest and compassion is what establishes meaning and purpose in life.

When you feel discouraged, you feel all alone -- and there is some truth to this feeling. But in many important ways you are not alone. There are hundreds of people in your city who have similar feelings at times. If disturbing thoughts wake you in the night, know there are other struggling with their pain. No one can share your unique experience, but there is kinship and a strength among all of us who are no longer able-bodied. (This is why Support Groups are ESSENTIAL!)

There are some positive coping skills that are required by unavoidable health changes. These are summarized below.

Make Your Expectations Realistic

The most important aspect of making expectations realistic is the recognition that they are time-limited. "What can I do now on the basis of the way I feel at this moment?" If you have two minutes, what are you going to do? I counsel people to check with themselves to find out what they want to do. Illness can make you feel that you must surrender all goals, all wishes. But that is not necessary. Make your expectations run like this. "Within the limits of my physical ability I will do whatever it is I want to do for as long as I can."

Approach Problems Actively

A second essential skill is an active approach to problems. What is an active approach? It consists of defining the problem and determining the outcome you want. It involves trying to ensure that any energy expended constitutes a step toward the solution.Rarely does it constitute the complete solution. The admission "I cannot do something" is often the first step in solving a problem realistically.

Define what you want and then use every ounce of creativity you possess to determine how you are going to make it happen. Creativity is notimpaired by illness. When you define the problem you figure out how many facets there are to achieving some kind of resolution, and then you expect yourself to make only that part of the effort that is realistic. What this means is that you need a broader sense of community. There are going to be a number of things you cannot do alone. Your dreams do not have to change. How they are realized will probably change. The creative, flexible use of your energies and creativity to get as much satisfaction as possible is your mission.

Seek Appropriate Help

The next skill to learn is to ask for appropriate help. It is not a moral weakness to ask for assistance, but many can probably recognize the tendency to regard asking for help as shameful. It is a limitation if one does not know how to determine whether or not assistance makes sense. It is a limitation if one is harsh or angry with the helper. Asking for help can become a more and more graceful skill. It is certainly not the first choice for people who would rather do everything themselves, but it should be your choice if you are going to pursue what you need and want -- when you cannot do it alone. If you have a hard time asking for help, consider what you would do if you were fully able-bodied and a friend of yours had your particular problem to solve. What would you do? Do you see yourself denying help as you fear others might deny you? Would you be upset if your friend asked for the specific help that was required? Chances are you would feel fine about helping out if you could.You would just do it. Try to be as kind to yourself as you would be to another when it comes to asking for help.

Handle Your Anger

The next skill involves learning how to become emotionally efficient and energy conscious. Energy is a tremendous problem for those with chronic illness. There is none to waste. Some of the most wasteful expenditures of energy are for resentment and anger. These emotions are not bad in themselves, but they do wear you out.  If you are angry, it helps to have some consciousness of what you are angry about, and whether you want to angry about that. Sometimes you will want to be angry because that is the appropriate response.Sometimes you will want to be angry because it is more efficient to be openly angry than to deal with bitterness or other forms of calcified anger. The better you get at being direct about anger early, the more energy you save and the more efficient you are. Surprisingly, many people do not know how to recognize their own irritation or anger. If you are feeling irritated, it might be helpful to be assertive, even if in the short run you feel uncomfortable.  

Participate

Another skill that is especially restorative for those with illness is to put positive energy back into the world. You can do this with family, friends, with self-help groups connected with your illness, or with community groups. Put your talents, your compassion, your knowledge, and your experience out there in a way that can benefit others. Be a good friend to yourself and don't overlook your finer qualities.

If asking for help is a skill you possess, then there is even more constructive energy available to invest in the world around you.Obviously, one of the things illness can do is to constrict your social world. Sometimes, this leads to the perception that there is nothing you can do for others. That is just flat-out wrong. If you have exhausted your own resources in looking for ways to participate, you can call organizations that are concerned with your illness, like the Arthritis Foundation, (or various Lyme Organizations) or the National Multiple Sclerosis Society, as well as other national and local self-help and research organizations. They can offer suggestions, and may have specific ways that you can help them. People volunteer because it feels good.

Live In The Present

Another skill, that is a challenge to learn, is to look neither too far backward or too far forward. If you are only looking backward, you are giving up on yourself emotionally. Your losses are major issues, but losses do not get people through one day at a time or one day after another. Losses are not a good reason for living. If you use all your emotional energy considering how things were before the illness and comparing it to how things are now, you are being very self-punishing. If you sense this going on, you need to be extremely aggressive about rejecting this.

Illness does not diminish one's humanity. Mobility and physical comfort decrease with illness. Fear and worry increase. But illness does not diminish humanity. Be humane to yourself. Avoid dwelling on how good things were I the past compared to now.(**Note: This is an issue that I particularly have been challenged with. For example, everytime I drive by Mission Trails, I feel so sad that I'm physically unable to be active and hike 4 miles a day like I used to - BR)

Also avoid distant future fantasies. There is no way to know what will happen some years hence. And you know, there never has been a way to know the future. If you are not stuck in the past or tormented by distant future images of what should be, you have the opportunity to manage this day with awareness. Living in the moment with consciousness, patience, compassion, and appreciation for yourself and others lets you get on in a creative way, in spite of the pain of your losses.

Cherish The Good Times

The last skill I would commend to you is to pay attention to the positives. This can only be done if you have already mastered the skill of living fully in the present moment. You go through every twenty-four hours with enough of yourself available to the world that when something positive happens you let it in. There was a rainbow yesterday. There may have been an interesting interaction between you and the grocery clerk, or you had a close, warm exchange with someone you care about. These are the kind of positive moments I mean.

These are moments that need to be framed and stored to be used on days that are much harder. If we are in a quagmire of negative emotion, we can turn anything into proof that there are only painful things in the world. This final skill is learning how to hold onto the positives, to cherish them sufficiently that they do not drop out of your repertory of significant life events.

Once you notice the positives, how do hold on to them? The best way is to slow down -- to use relaxation, meditation, and your own internal capacity for joy to feel that moment inside. Let it resonate within. This allows your emotional commitment to be fully focused on the process of life. Be as emotionally able-hearted as possible, despite physical limitations.

What all these coping skills have in common is that they are daily necessities. You don't just get them down pat once and then forget about them. You need to use these skills frequently. Every day is going to give you something different to try to manage. You need these well-practiced skills to succeed.

The circumstances you face may at times be miserable. Nothing can alter this reality. Trust that you will learn from each stage and from each cycle through the stages. Learn to trust others enough so that when the situation seems unbearably stressful, outside counseling and psychotherapy can be sought. Renewal cannot always be attained without help.

If these ideas have reached you at any level, you have already begun the process of renewal. You are adapting in the face of great difficulties. There is no right way to come through the ravages of unavoidable health changes. But I have tried to show you ways to remain an active agent in your own life.

You are not alone. None of us is alone. We may not know each other yet, but there are kindred spirits. A single treasured personal relationship makes the path bearable.

I wish you a safe and thoughtful journey on what is truly a road of hope. I travel it with you. You have a companion and you have hope.

To order a copy of After The Diagnosis, by Dr. LeMaistre, contact your local bookseller or bookselling web site. Or send $15.95 to Alpine Guild, Inc. P.O. Box 4848, Dillon, CO 80435. The book will be promptly shipped to you.