Saturday, April 14, 2012
Is It Ever Appropriate To Take Narcotics For Years To Treat Chronic Pain?
Is It Ever Appropriate To Take Narcotics For Years To Treat Chronic Pain?
Take THAT paranoid, judgmental people in my life who have tried to label me a junkie just because they saw me taking one a couple of times! lol. (I usually do take pain medicine when I'm around people for any significant amount of time, or drive very long at all, because it's a pretty rare occasion, usually I'll get tired and start to hurt and not be able to sit or lie down every 15-30 minutes like I do at home. And tired, burny muscles will make me cranky and out of it so...)
No, seriously, it was nice to see this in writing, doctors have become so freaked about prescribing narcotics since the FDA cracked down, that they sent me to a pain management specialist! I wasn't sure what the point would be, because I do not have the type of chronic, non-stop pain that most people dx'd w/FM describe; I did at one time, but was able to get it in check with Myofascial Release Therapy and Chiropractic visits, and very slow but steady self-rehabilitation at the local Y Gym.
(I still get hurt easily, get disproportionately sore doing simple things, and wake up with or develop the body aches from time to time though.
I'd injured myself last year and been in moderate pain for a couple of months (evil vacuum, yup, that's how fragile I am. Granted, I also have Degenerative Disc Disease, so...) but that was months back, so I went just to appease the doctors...
Pain Specialist's verdict? There was no reason for me to have been referred there. He didn't prescribe narcotics at all, and if I needed and could manage my pain with just a few Vicodin a month, the doctor behaved unprofessionally in not giving me the script!(And trying to pawn me off on him!) He told me to be careful and do nothing that could mess up my back any worse, because it looked livable in the MRIs, but if it got any worse I'd likely need surgery AND/OR welcome the epidural pain shots in my spine that he'd graciously offered before he realized I didn't have any significant pain at the moment. Then he sent me on my way. (Not to say I was pain-free, I do live with some level of discomfort, but it's a level I can usually ignore to the point I'm not even conscious of unless it starts interfering with my thinking or making me cranky, then I usually realize it and take something to calm it down...And I'd spent 45 minutes filling out paperwork before seeing him, so it was to be expected that my neck would be bugging me. I just don't think that quite compares to the level of pain I have experienced in the past or that most FM patients deal with contantly, to call it chronic pain...if that makes any sense.
So yup. If you've had similar problems, here it is again, share it with the paranoid peeps in your life! (Not at all to say that you don't have to be careful with narcotic painkillers. If you ever do have to take them constantly for more than a couple of weeks, or feel any dependence on them, DO talk to your doctor and explore alternate pain techniques. For example, if I'm at home and in pain, I try every pain mangement method I know before going to the pills, & save those for when I have to be around other people & showing up smelling like arthritis cream or ice/hot packs hanging off me would be inappropriate and/or embarassing, hehe.)
Here's another article: Is It Ever Appropriate To Take Narcotics For Years To Treat Chronic Pain?
Thursday, April 12, 2012
Don't know what to think... SSA CFR RE: Viral Infections
I decided to do my video today, and to do a little research before I started.
I found some links to some info that makes me want to scream and pull my hair out.
Seriously. Scream. Preferably at my old attorneys, while asking them what the hell they were thinking when they prepared my case, did they not realize they were playing with my life? Years and years of my life? (Going on 6 now...)
Well, I guess I'd better explain a bit before I go on with my rant.
Here is the content of one of the pages of the SSA's Federal Regulations describing Immune System Disorders that meet the criteria for their definition of Disability.
http://www.socialsecurity.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm#14_08
I'm specifically referring to this section:
Umm, I think with all the viral infections I have, an equivalency can be made for that. Or the CFS definition. But they haven't taken that into account either, it seems... (http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html)
I'm also wondering if an argument could be made for an equivalency to HIV/AIDS. (Thinking of an article I've read somewhere where it indicated that Dr. Nancy Klimas, an Infectious Disease specialist in FL who treats AIDS & CFS says she'd rather have AIDS than CFS if she had to choose. (I know she was talking in general, not about legal equivalents of impairments, but...)
Pretty sure I meet this one, with my two bulged discs and pinched nerves:
Then there's also a section on Interstitial Cystitis:
http://www.ssa.gov/OP_Home/rulings/di/01/SSR2002-02-di-01.html
And then here's an actual case, I don't understand how it could have been won and mine not, I have all the same symptoms (if you replace HIV w/Enteroviruses) and more...
http://www.disabilitylawclaims.com/case_results/claimant-suffers-from-hiv-major-depression-neuropathy-gastroesophageal-reflux-disease-chest-pain.cfm
It just makes me so angry, re-reading the decision, what a shoddy job was done, most of the information was untrue (like how they said my POTS was mild and not a big deal at all and controlled by medication! NOT! I just couldn't find a specialist who would treat it!)misinterpreted, or based on incomplete information. (Like them failing to note the doctor at my Physical Therapy clinic was an Orthopedic Surgeon, so my pain must not be so bad, they said my Degenerative disc disease must not be that bad if I hadn't seen a Neurologist, which I had, and even had tests proving that I had nerve problems related to my bulged discs, as indicated under the criteria here:
http://www.socialsecurity.gov/disability/professionals/bluebook/1.00-Musculoskeletal-Adult.htm#1_01
And here's the last one, for POTS:
Agh. I'm sorry for the rant, this just makes me so angry...makes me wonder why my old attorneys didn't do a better job, why the Judges are being so unfair, why they don't care that they're messing with my life, which keeps getting tougher & tougher... I was having some major anxiety earlier, and it got better, after venting to my brother a bit, then got worse when I came back to finish this, so I think this is why. I just feel so completely helpless...wondering if my new lawyers will do their job, and if the judge is going to be a fair one for once. It just blows my mind...And I have to admit, I'm really scared this time. Just going to the hearing, I almost fell apart last time, and after the year I've had...Living with so much uncertainty... It's almost too much to bear.
I just want to get well! I'd even settle for not getting much better but not having the stress I have right now, having someone to help me clean when I'm too weak (all the time these days, I got worse just tidying up a bit, nevermind actual cleaning!)health insurance so I can get my medications and try to keep my symptoms at bay...Just a better quality of life...
Well, my upper back is burning & going numb, so I guess I'd better lay off the typing and lie down. Always with the lying down, grr. I so want to eat something disgustingly sweet and fattening right now...lol.
I found some links to some info that makes me want to scream and pull my hair out.
Seriously. Scream. Preferably at my old attorneys, while asking them what the hell they were thinking when they prepared my case, did they not realize they were playing with my life? Years and years of my life? (Going on 6 now...)
Well, I guess I'd better explain a bit before I go on with my rant.
Here is the content of one of the pages of the SSA's Federal Regulations describing Immune System Disorders that meet the criteria for their definition of Disability.
http://www.socialsecurity.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm#14_08
I'm specifically referring to this section:
D. Viral infections:
1. Cytomegalovirus disease (documented as described in 14.00F3b(ii)) at a site other than the liver, spleen, or lymph nodes;
Umm, I think with all the viral infections I have, an equivalency can be made for that. Or the CFS definition. But they haven't taken that into account either, it seems... (http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html)
I'm also wondering if an argument could be made for an equivalency to HIV/AIDS. (Thinking of an article I've read somewhere where it indicated that Dr. Nancy Klimas, an Infectious Disease specialist in FL who treats AIDS & CFS says she'd rather have AIDS than CFS if she had to choose. (I know she was talking in general, not about legal equivalents of impairments, but...)
Pretty sure I meet this one, with my two bulged discs and pinched nerves:
1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:
A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine)
Then there's also a section on Interstitial Cystitis:
http://www.ssa.gov/OP_Home/rulings/di/01/SSR2002-02-di-01.html
And then here's an actual case, I don't understand how it could have been won and mine not, I have all the same symptoms (if you replace HIV w/Enteroviruses) and more...
http://www.disabilitylawclaims.com/case_results/claimant-suffers-from-hiv-major-depression-neuropathy-gastroesophageal-reflux-disease-chest-pain.cfm
It just makes me so angry, re-reading the decision, what a shoddy job was done, most of the information was untrue (like how they said my POTS was mild and not a big deal at all and controlled by medication! NOT! I just couldn't find a specialist who would treat it!)misinterpreted, or based on incomplete information. (Like them failing to note the doctor at my Physical Therapy clinic was an Orthopedic Surgeon, so my pain must not be so bad, they said my Degenerative disc disease must not be that bad if I hadn't seen a Neurologist, which I had, and even had tests proving that I had nerve problems related to my bulged discs, as indicated under the criteria here:
http://www.socialsecurity.gov/disability/professionals/bluebook/1.00-Musculoskeletal-Adult.htm#1_01
1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:
A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);
OR
A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);
And here's the last one, for POTS:
4.05 Recurrent arrhythmias, not related to reversible causes, such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled (see 4.00A3f), recurrent (see 4.00A3c) episodes of cardiac syncope or near syncope (see 4.00F3b), despite prescribed treatment (see 4.00B3 if there is no prescribed treatment), and documented by resting or ambulatory (Holter) electrocardiography, or by other appropriate medically acceptable testing, coincident with the occurrence of syncope or near syncope (see 4.00F3c).
Agh. I'm sorry for the rant, this just makes me so angry...makes me wonder why my old attorneys didn't do a better job, why the Judges are being so unfair, why they don't care that they're messing with my life, which keeps getting tougher & tougher... I was having some major anxiety earlier, and it got better, after venting to my brother a bit, then got worse when I came back to finish this, so I think this is why. I just feel so completely helpless...wondering if my new lawyers will do their job, and if the judge is going to be a fair one for once. It just blows my mind...And I have to admit, I'm really scared this time. Just going to the hearing, I almost fell apart last time, and after the year I've had...Living with so much uncertainty... It's almost too much to bear.
I just want to get well! I'd even settle for not getting much better but not having the stress I have right now, having someone to help me clean when I'm too weak (all the time these days, I got worse just tidying up a bit, nevermind actual cleaning!)health insurance so I can get my medications and try to keep my symptoms at bay...Just a better quality of life...
Well, my upper back is burning & going numb, so I guess I'd better lay off the typing and lie down. Always with the lying down, grr. I so want to eat something disgustingly sweet and fattening right now...lol.
Tuesday, April 10, 2012
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.
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.
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