Update: April 2012

Well. Hard to believe a third of the year is behind us already, isn't it?
And more still to believe I've posted so little. It's been a bumpy year, but the main reason was I didn't want to keep putting so much negativity out there.
That, and I've been really exhausted A LOT this year, and, the times I've been in a good mood, well, I didn't want to over-analyze and risk ruining it, haha.

My living situation is still the same. Place was supposed to be sold at auction last month, but they gave an extension, so I'm still here. I wanted to cry, because I'm so sick of things being up in the air, and had psyched myself up to pack up & go, but I realized it's for the best, because I've been pretty sick the last couple of weeks, have hardly been able to do squat. (Ran out of some supplements, and my stomach virus woke up again, making me nauseous, weak, and all around miserable...) But I did finally manage to splurge and have the place cleaned, thank goodness, because even tidying up kicked my butt. I've been trying to do laundry for 3 weeks now. Things are getting tough.

My Mom decided to try and help me get well, and she'd read some book called The Immune Cure, which is actually pretty fabulous, it is about various diseases & conditions, & treating them with vitamins & supplements, but what really impressed me was the authors' understanding of CFS. Th1, Th2, all that. So I tried it, and I think it was helping, kept things under control even after stopping the Cat's Claw I was taking. (Regular, not Samento brand, not TOA free). I also added ProBoost Thymic Protein A. Good stuff. But then ran out of that, and my probiotics, and things went downhill fast. I finally got my shipment today, and I also went ahead and got the Samento brand TOA-free Cat's Claw from Nutramedix. I figure if the regular Cat's Claw can help me (was helping before I took the ProBoost, for months) then it was the thing to try, plus I'd feel dumb telling my doctor I hadn't tried it when I'd had the money to try the other supplements. (Now I'm going w/o some of the other ones, but oh well.) But yes, this type is free of toxicities, and supposed to be something like 100 times stronger than the regular kind. I wasn't sure I was buying it, but when I take just two drops my stomach starts acting up a bit, and a dose is 15-30 drops! (You're supposed to slowly ramp up to that.) So I am hopeful.
Mom seems really committed to helping me, whatever it takes, as much as she can, which I warned her would be expensive, and she is finding out, but she's still on board.

Lately I've had some tough times my whole situation has me extremely anxious, trying to figure out what to do. Was going to go to my cousin's to visit, but had to come to terms that I'm not up for that, more than likely, I'd end up coming home in tears because I couldn't even pretend to keep up, and maybe they wouldn't understand. (Plus there would be kids, which I love, but I'm terrified I would get overwhelmed & not have the patience for them...) Then I was getting to feel so close to a nervous breakdown I decided I was going to go to my favorite spa/hot springs resort in South America, just to get away from everything & everyone, but that got kind of tangled, & really, I'm not up for travelling, either, if I face the cold hard facts. I've had offers, from the East Coast, to the Southwest, to Mexico, but honestly, it's that whole "but you don't look sick" thing getting in the way again. It's very hard for people to look at me and grasp that I am constantly managing symptoms, ALL DAY LONG, almost every single day, 7 days a week. My brain fog is only improved because I'm alone a lot and as long as there's not too much going on I can think straight, but add being around people, and sometimes I just get so overwhelmed and tired so quickly. I'm just too sick.

So with my Mom's continued financial help maybe I can continue the herbals/supplements, relax a bit, and seek out additional treatments. (I have IV treatments on my agenda, H202, which has helped before, and high-dose Vitamin C, the only part of that book I didn't try and am curious to.) Plus Meditation; feeling desperate from the free-floating anxiety, I screwed up my budget and decided to splurge & finally by this Sound medtation program I've wanted for YEARS that makes it really easy to go into a meditative state, and is supposed to have all kinds of great health benefits. Plus, I'm getting back into Reiki, and exploring some other energy and spiritual healing practices.

And I actually managed to make a good outline of my symptoms last night. I still keep racking my brain for ways I can make the SSA judge understand how freakin' sick I am...my latest idea, since every other one has turned out to be a wash, was to make a video explaining my illnesses & my situation. So last night I decided to make an outline of what to say & address, and I ended up with this whole detailed outline of all my conditions and how they affect my days, month, life:


* About me
* I've been trying to get this SSDI application approved for 5 years now.
* I've been sick for 10 years.
* Tried going back to work repeatedly, first part-time, then full-time, then part-time again, but failed to keep up with jobs, got sicker.
* Went to school until I couldn't as evidenced by school transcripts, I started having trouble keeping up, began getting bad grades, incompletes, and tried to go back but had to drop classes because I couldn't focus, even on "fun" classes that I wanted to take as a distraction.
* Have tried to come up with own business ideas, multi-level marketing, working at home, but when I try to implement them I get worn out before I can complete, and symptoms worsen with strain.
* Have been trying to get SSDI for 5 years, it has been horrible to go through, have wanted desperately to go back to work, but keep getting sicker "the definition of insanity is doing the same thing over & over again and expecting different results".
* Doctors cannot help me, but do acknowledge I'm sick, just because they don't know enough to help me doesn't mean the illness doesn't exist.
* Evidence: High viral titers, positive for Orthostatic Hypotension & POTS/Tachycardia, Tilt Table Test negative for syncope but shows abnormalities & verifies POTS. Surgery for Endometriosis and removal of implants, ultrasounds show worsening & additon of Adenomyosis (more severe than Endometriosis, and affecting uterus.) MRIs show Degenerative Disc Disease, bulged discs, nerve conduction studies show pinched nerves, meet tenderpoint tests for Fibromyalgia and diagnosis criteria for Interstitial Cystitis

* Conditions
*
* POTS (Dysfunction of Autonomic Nervous System, mostly involving regulating bp & heart rate)
* Symptoms:
* Low Blood Pressure
* Orthostatic Hypotension
* Tachycardia
* Dizziness, near syncope
* Headaches when severe
* Circulation problems
* Problems regulating body temperature
* Digestive Problems
* Problems being upright, even sitting, problems standing, start feeling ill, may trigger tachycardia despite medication, cognitive dysfunction
* Cold extremities (hands, feet, legs, sometimes head)
* Gets worse during menstruation, because I can't have extra salt to keep my blood pressure up, so it causes it to worsen during that time.
* Also gets worse during any acute infection, such as UTI, Sinusitis, Upper Respiratory, etc.
* Causes me to Fatigue easily
* Aggravated by exercise, sometimes even as light as picking up around the house.


* Chronic Enteroviral Infection/CFS Definition: Stomach virus that my body could not fight off due to off-balance immune system that became chronic
* Symptoms
* Stomach flu: Stomach Pain, Persistent Nausea, Acid Reflux, Irrritable Bowel, Diarrhea, Night Sweats, Malaise, Fatigue, Body Aches
* Caused POTS/OI
* Was taking anti-viral medication that helped a bit but it caused Macrocytic Anemia so I had to stop
* CFS overlaps with Fibromyalgia
* Sore throats, swollen lymph nodes


* Fibromyalgia
* Some symptoms overlap with Infection/CFS

* Body aches
* Magnifies pain, both pre-existing and new, and possibly from other conditions
* Brain fog similar to that experienced with MS
* Foot pain
* Fatigue
* Tender Points
* Easily injured


* Degenerative Disc Disease

*
* Symptoms
*
* Shoulder/Upper Back/Neck pain
* Pinched nerves
*
* Tingling, numbness

* Nerve Conduction Studies
* Last time I tried to vaccuum a bedroom I couldn't finish, even after switching arms, and was in moderate/severe pain for 2-3 months.


* Interstitial Cystitis Definition: Chronic bladder condition that causes bladder pain and frequency
*
* Have found treatment that helps, but still struggle to control it completely
* Flare Ups
* Pain, feels like severe UTI, have to take bladder analgesics and Vicodin due to severity, lay down
* Causes frequent urination to the point of keeping me from sleeping well at night or going anywhere far from toilet
* Bloating and severe sensitivity of lower abdomen, cannot wear pants or any clothing that constricts the area whatsover
* Causes pain during menstruation, even when controlled, so minimum monthly flare-ups during that time.
* Cannot eat certain foods or drinks



* Endometriosis
* Definition: Endometrial tissue outside of uterus attaches to ovaries, pelvis, and other organs, causes severe pain and hormonal imbalances.

*
* Symptoms, Surgery, Adenomyosis
* When severe, causes extreme pain, to the point of vomiting, have had to go to the ER. Worse on a monthly basis.
* When not controlled causes bloating, pain & sensitivity in pelvic area, nausea, feeling of fullness so I can't eat much, hot flashes.
* During menstruation, any bloating causes pain, so I cannot eat excessive salt, which I need to eat to control POTS/OI so that gets worse during that time.


* Allergies/Sinusitis
* Chronic Sinus Congestion, recurring infections (very debilitating because both infection & antibiotics worsen my POTS symptoms) must take high doses of anti-histamines, cannot take decongestants that have stimulants in them because triggers tachycardia.
* Asthma if I don't take anti-histamines, inhaler causes tachycardia as well
* Severe Sinus Headaches
* Brain fog



* Time and Energy spent managing symptoms
* All this can be confirmed by medical records.

Yup, so that's it in a nutshell. (I did leave out some more personal stuff though.) Think it gives a good picture? I'm not sure. All I know is that's most of it, in the most organized form I've ever managed to set it down, and that it's exhausting to try and appease all the stupid symptoms and just keep myself in homeostasis, meaning, at a level where I can get through the day without any majorly mood crushing misery and get the few things I absolutely have to do done, or at least get some rest. Maybe if they see me actually saying it, it well help them believe it. Coincidentally I got a call from Washington D.C. today, seems they are going to expedite my case. Please pray, meditate on good thoughts of my winning, or send some Reiki Energy or whatever positive vibes you can my way...If I could just win it would change my life...The stress I've been under for the last several years alone being lifted I'm sure would go a long way towards healing, as all that energy trying to just survive is energy I'm not using to heal. I could have a life again, with dignity, w/o feeling like I'm constantly jumping through a million hoops and juggling precarious situations. (Do I get medication? Or gas? Can I find enough gas money to the pharmacy? Can I get to my doctor's appointment without running out of gas? What do I buy that will last to eat the last week of the month when I'm out of food stamps? Pay my phone bill or my car insurance?)
If I won, not only would I have decent health coverage and be able to try the medical treatments I want, I could move to my own place, on my own terms, and do my own thing, truly in peace. My own roof/sanctuary, me making sure the bills get paid while not having to stress about it. California has everything I need and want to get better, really, I just need the money to utilize the resources and peace of mind that that would bring. (Oh, and it's close to Mexico, if I should find any treatments cheaper there.) And a life with a little bit of happiness would be helpful, too. With PEOPLE in it to distract me from my miseries, to care for and to do stuff with that isn't stuff I absolutely have to do; hopefully the happy chemicals generated from that would give me a little more energy, or at least the will to push myself a little harder more easily! I really believe at this point I have a spiritual sickness, as well as a physical one. I've been through the wringer, and apparently it's starting to show! (Between the ever increasing gray hair & my mother's neighbor telling her I have "sad eyes"!?!) I am sorely lacking joy, though I've tried my best to extract it from every little thing I can, it's getting far too exhausting to do that. Yes, I think a Wholistic approach is definitely the answer...Damnit, I AM going to get better. I just am.

Whacky Itching Could be Related to Cervical Spine Disorders

Wow, who'da thunk it? I've had weird, unexplained itching for years now...turns out spinal issues, one article specifically mentions C6, can cause neuropathic pruritis, or: ITCHING!

http://emedicine.medscape.com/article/1355312-overview#a0104

http://www.ncbi.nlm.nih.gov/pubmed/12664013

Hair Loss in CFS/FM

Great article by Doctor Teitelbaum (one of my fav CFS docs).

Wish I could have read it a year ago! So grateful my hair's not falling out anymore, and has even seemed to grow back in. While it wasn't coming out in chunks, like from chemo, I could run my fingers through my hair and enough strands would come off that it would be alarming. The carpet was lined with a film of my hair (getting help vacuuming usually takes months around here) as was the bathroom tile, even though I would clean it up often, and it even ended up in the fridge and on the stove & counters, eww. (Those I cleaned right when I noticed, but it kept happening.) It was a little alarming, and icky, too.

Thankfully, it's all better, but just in case any of you are suffering the same symptom, now you know you're not alone and there are some things to consider/try :)

http://www.endfatigue.com/health_articles_f-n_2/Hair-treating_hair_loss_in_cfs_fibromyalgia.html

Sometimes a Chick with FM just has to get thrifty!

Feeling bad lately because I'm running up the electric bill. I was so happy that summer was over, because I feel really rotten in the mornings if I wake up and it's too hot. It's like I'm swollen or something, groggy, uncomfortable, and in slow-motion, takes a long time to wake up. So the brief Fall weather was perfect, I started practically hopping out of bed! It felt so good!

(I recently read an article about MS and heat intolerance that describes a lot of what I've been experiencing. Finding an interesting number of similarities between FM/CFS, & MS, except the life threatening part.)

Unfortunately, Fall was much too brief, and now with the fast approach of winter, even here in California, I'm finding that mornings are getting rough again. I feel myself get all stiff and achey just about as soon as I leave my bedroom, and am finding it a lot harder to get going. Turning the heat on helps tremendously...but I'm not the one paying for it.

So anyhow, I already knew about the Universal Lifeline Service for phone service. I pay about $7 a month (albeit w/o long distance).

I decided to look up something to help with Electricity, and found two programs:

This one is called CARE and is an income based discount, which I should be able to get:

http://www.sce.com/residential/income-qualified/CAREFERA/

This one helps people w/special conditions, mainly who need special life support devices or have specific medical conditions or are immunocompromised. I think I might be able to manage that last one. Worth a try. Also worth noting, since many w/FM have Sleep Apnea, that would qualify you too.

http://www.sce.com/residential/rates/medical-baseline-allocation.htm

Eligibility:

1. Regular use in the customer's home of one or more medical life-support devices essential to maintain the life of a full-time resident of the household; and/or
2.

A full-time resident of the household is: a paraplegic, hemiplegic, quadriplegic, multiple sclerosis, scleroderma patient, being treated for life-threatening illness, and/or has a compromised immune system.

These are in California, but I'm sure they have them in many other states as well.

Alternative Treatments for Allergies

My newest in the long list of my ailments is my allergies. I had a very stressful year last year, and I guess that, having to breathe ash-laden air (there were bad fires in CA last year, the sky was brown for weeks, and since it was during a Fall heatwave, I had to keep the windows open) and my already screwy immune system, I developed the allergies from hell. The worst being my allergy to the cat who's spent over a decade with me. Now, obviously, getting rid of her would be like giving up my child. It's NOT going to happen. Plus, it's not just her, I seem to be allergic to all kinds of things, inside, AND outside, so it probably wouldn't help all that much.
So I've been struggling.
I had NO idea how bad allergies could be!
With all the advertisements for anti-histamines on TV, it would seem like all you have to do is pop one, and voila! All better!
Not the case.
Also, I was under the misconception that allergies were like a mild cold. Not that having a cold non-stop would be fun, but...
Now, granted, I did have the sneezing, watery-itchy eyes, stuffy nose thing. That, the anti-histamines seem to have helped. (Along with eyedrop anti-histamines, and washing my hands immediately after touching kitty.)
But I still get EXCRUCIATING sinus congestion, which makes my brain fog sooo much worse, makes me so tired (plus the existing fatigue of course, which I've learned to live with, and was manageable until this point in time) I have to lie down and if I'm really unlucky, really bad painful sinus headaches.
In the past, whenever I had sinus issues, I could take a pseudoephedrine or two, and it was GONE, all better within 20-60 minutes. Now, I'm lucky if they work at all.
There there's the asthma attacks. Those, thankfully, seem to respond well to the anti-histamines, and having an air purifier.

So the big thing is the sinus congestion & subsequent headache, increased fogginess, and fatigue. Not only was the Pseudoephedrine not working, but it was making me jittery, moody, and possibly aggravating my heart & BP issues.

So I did some research and came up with the most unexpected thing: Digestive Enzymes!
Apparently alternative allergy practitioners use them to treat allergies.
Bromelain seemed to be a big one.
The next important supplement was Quercetin. Basically it sounds like a natural anti-histamine. Vitamin C is good as well, as it's good for the immune system.
I'd also been wanting to try Turmeric and Ginger supplements for inflammation (asthma and bodywise) and pain. (Turmeric, along with being an amazing anti-oxidant, clearing plaque from the blood vessels and the brain, also seems to work on the nociceptors, something about preventing or controlling central oversensitization, which causes FM pain and is why nerve pain/epileptic drugs are working for FM.)

I was lucky to accidentally come across a supplement that had all of those, plus Papain, another enzyme. It's definitely helped. Not cured, but helped.

Also, another big help is Neilmed Sinus Rinse. You have to do it for awhile, and keep it up to keep results.

I've read about a technique called BioSet, too, which totally makes sense to me, as it employs muscle testing, of which I am a believer, but of course, no $$ for that yet...The doctor I spoke with sounded confident she could if not cure, get the allergies very under control. Add another thing to my wishlist ;)

A bit worn out now, so more later.

Cognitive Dysfunction in FM/CFS and MS: Similarities

The "Fog" is driving me insane lately! My brain often feels like a pretzel, I feel soo socially clumsy and tactless, and I keep forgetting to do important things...I get overwhelmed, just trying to make a decision if I have too many options, or trying to overcome an obstacle. Sometimes just too many noises at once overhwhelm me (like trying to watch TV with the fan on, I get all stressed out.) I feel like I have ADD sometimes too, so hard to focus. It's really tough on the phone, too, because I zone out, or think too slow, take too long to respond, and people on the other end get confused, I get flustered, and...ARGH! Talking on the phone has become the bane of my existence lately!
So I remembered the Doctor who was going to do the Neuropsych testing asking me if I was sure it was FM, if MS had been ruled out, and recalled that it was mentioned in one of the articles I posted, and decided to Google it. Interestingly enough, they did an amazing job of describing the Cognitive Dysfunction in MS, AND it sounds a LOT like what I deal with, so I decided to post it. Would love input on whether or not other people have similar problems to what is described in this article:

Cognitive Dysfunction as a Symptom of Multiple Sclerosis

What FM and CFS Mean for Me, Personally

On the sidebar to your right you will see links to sites explaining exactly what FM and CFS/CFIDS/ME are. You'll probably see a whole laundry list of symptoms. Not everyone has all of them, and the ones that are required for a diagnosis will even vary in degrees. So I thought a good place to start would be to elaborate on what these diagnoses mean to ME personally.

Fibromyalgia

I consider myself lucky here. The main symptom of FM is pain. Thankfully, mine is not constant or as severe as some. Mine seems to come in flares. Sometimes it's my whole body. But usually it's a certain body part that acts up for a period of time, sometimes a day, sometimes months.

FM Symptoms

Pain

Comes and Goes
Neck/Trapezius Region
Hands/Wrists
Ribs
Lower Back
Knees (prone to tendonitis)
Bottoms of Thighs
Feet
Whole Body Aches
Vague Discomfort

Fatigue

Waxes and Wanes
Varies from:
Wake up dying for more sleep or feeling groggy/weak/dizzy
Low Stamina (Get tired easily, within hours of awaking)
Exhausted but can't relax
Complete lack of energy - Holding myself up in a sitting position takes effort

Muscle tension


CFS

See above, plus:

Fluish body aches and malaise (Feeling like I'm getting the flu)
Swollen glands
Swollen Lymph nodes

Dysautonomia:
POTS
Low Blood Pressure
Pounding or racing heart
Inability to hold electrolytes
Chest pain
Feeling of forgetting to breathe, or breathing takes great effort
Inability to stay upright for long periods of time (standing/sitting) (POTS)
Neurally Mediated Hypotension
Problems regulating body temperature - Overheating/Hot Flashes

Others:

Subclinical Hypoglycemia
Balance problems/Clumsiness
New Allergies/Asthma

Moderate to Severe Cognitive Dysfunction, including:
Memory Problems
Inability to recognize people's faces I don't know well
Word-finding problems
Forgetting what I was saying, or going to do
Disorientation
Trouble following verbal directions
Problems focusing and blocking out distractions
Inability to multi-task effectively

How does this affect my life?

In many ways, as you can imagine. I can't hold a regular, even part-time job. Even school, at this point, has become very difficult. (Though I'm learning that if you are up-front and honest, and keep the lines of communication open, anything is possible. Easier said than done...I don't like feeling like I'm using my illness to get special consideration, but if it well help me finally get that degree...For now I think maybe I just need to rest for a bit.)
My symptoms are unpredictable and can change quickly. One day, I might feel pretty close to normal, the next I might have to lie down most of the day. One week, I might be just fine in the mornings, then for the next month, I may be slower, stiffer, more tired...and if I try and push myself to hard too early, I trigger more symptoms. Then, sitting up for a couple of hours, doing nothing, is about the only chance I have at being able to accomplish something in the afternoon. It's like my body has to adjust to being upright or something...

It's hard to make plans, social, or otherwise. I usually have to rest and save up my energy when I have a social engagement.

Many times I don't feel like talking on the phone, because I'm tired, and that aggravates the cognitive dysfunction (dubbed "brain fog" or just "fog" by many of us with FM/CFS) and I might have trouble putting together a sentence, finding words, space out in the middle of a thought, or end up just being plain tactless, which I'm trying to learn not to be mortified about. Again, something I'm trying to work through and overcome. Part of it is self-consciousness, I guess.

Sometimes, I may get very overwhelmed, and end up blocking out everything but the bare necessities of getting by. I'm working on this though. (I think all the stress I've been under the last couple of years, on top of being sick, has pretty much made pieces out of my ability to deal with stress well; I've been told I have slight adrenal problems too, and supplements I've taken definitely help, so that might be part of the reason.)

When I list it all out like this, it really puts things into perspective, and makes me think maybe I should be a little kinder to myself. I've really spent so much time feeling guilty and feeling like I'm not handling things well enough, like if I just tried harder I could "pull off normal", that somehow it's my fault that I ended up I this mess...
I think about all the movies, shows, and books I've read, even before I got ill, about people being so brave and graceful, even successful, despite their disabilities...and that doesn't help. But I have to remind myself. That's not real life. It's either fiction, or just a narrow glimpse into their lives. Also, I think if you grow up with a disability or illness, I think it's different. You learn your limitations and how to deal with them, you don't expect things that are impossible for you. To reach the age of 23, believing that anything is yours for the taking if you just work hard enough and are smart about things, and then have that all taken away, to have to change your whole outlook on life, who you are, learn that you have limitations, and force yourself to learn to ask for help, well, that's a pretty huge task.