For the last 11 ½ years I have been reading people, and a little bit of time prior to that, I started embracing my love for crystals, healing, reiki, oracle cards, and the like. I have always loved celestial things – even as a child. Being intuitive, even since I was around 7 years old, this part of myself was there but put on the backburner. Why? Mainly because no one believed me.
Well, as months went on and I started learning how to use oracle cards, sometimes I would get cards about forgiving myself, healing, and emotional healing. Honestly, I had no idea what I was supposed to be forgiving myself for.
Recently, I realized I had been blaming myself for my medical problems – as if I had caused them myself. Even writing this, I can feel the inner sadness. And while I have endured a highly mentally emotionally traumatic childhood, grew up way too fast, and had health problems literally my entire life, it never occurred to me that I was blaming myself for my health.
It took me over 11 years to recognize this in myself. *My guides knew this LONG before I did.* I was and still am reading a book called The Power of the Heart, and I have been journaling, being more open about my health, and also vocalizing things more to those around me. I also read a book about chronic illness that was meant to help the other person, not the one suffering, but I found it helpful.
You see, I have been blaming myself for how I feel, when I actually have minimal control over it. Sure, I can do some things here and there – I take Zoloft (which I would do a commercial for) which helps the anxiety and a little of the IBS and I take Aygestin for the endometriosis. I also take turmeric/ginger mixed together and a good quality fish oil supplement for inflammation, along with a probiotic and cranberry supplement. I am gluten free and dairy free. I don’t eat eggs, just whites but on a rotation. I can’t eat Chinese food (USA Chinese food), and I stay away from most things that are roughage (green leafy’s, coniferous veggies, most veggies actually. I tolerate potatoes but only organic ones and I can eat broccoli on a rotation. My diet is very bland and simple. (Safe, if you will.)
But despite what I do – which would also include some exercise, yoga, meditation, guided imagery, using essential oils, homeopathic remedies, and more … I still feel awful most days.
Even though I do everything above, most days I struggle.
Usually from pain in varies body parts or areas, extreme exhaustion/fatigue, stomach/bowel issues, anxiety, neuropathy type stuff, warmth – running a low grade temp but also being cold, feeling like I am dying and more. Each day varies in severity and it isn’t really “day to day” but “moment by moment”.
My former doctor hid the CFS/ME diagnosis from me for a few years because she didn’t want “to get me down” … upon talking to my eye doctor, she was supposed to tell me immediately. When I told her how I felt like I was dying most days and how when I was flared up it felt like I was walking in the sand on the beach, during an extremely windy day with the wind coming at me. That is what it feels like to move sometimes, or walk. Like I am moving against the grain and through sand.
Even though I have been working on my self-compassion now for a few weeks I struggle with it still, but I am improving. I still haven’t continued reading the heart book or the course I bought to help me deal with chronic illness (or the book that parallels it) because it still bothers me that I need them, relate to them and listening to others talk about their experiences with similar issues makes me sadder.
The physician who withheld the diagnosis from me, asked me if I wanted to talk to someone else who had recently been diagnosed with the same thing as a support for her. And I said no. I told my doctor that it has only gotten worse over the years and it makes me feel miserable and that I would only really depress her other patient because the honest truth of my situation sucks. I said – do you want me to tell her it got worse and not better? Do you want me to tell her what my experiences are? Nope. So I didn’t.
Don’t get me wrong, I am grateful it isn’t worse or life threatening, but it still sucks.
And some people with CFS/ME and the list of other problems I have, do improve over time but not everyone does. It might also be like a rollercoaster – good and then bad, and then better and then worse, and keep fluctuating all over the place. No one’s situation is exactly the same.
For me, having endometriosis (since 1998, diagnosed in 2001), fibromyalgia (d. 2006), IBS (d. 1986, again in 2000), allergies (early 2000’s), food intolerances (d. 2006, gave up gluten/dairy 2009), migraines (d. 2003), vitamin deficiencies B12 & D (around 2005), chronic Epstein-barr virus (2010, 2011, 2012, 2014, 2018), slight IgG deficiency (d. 2014, 2018), CFS/ME (2018), anxiety (2000, 2004, 2005, 2012, 2013), generalized anxiety disorder with panic (2014), agoraphobia with panic (2014), mild depression (2005, 2013, 2014), slight PTSD-like (not full PTSD) symptoms during my sleep and hypervigilance (2016), sleep paralysis (2017), hypothyroid (2008). Then I have smaller annoying things – tendonitis in my arms, wrists, elbows. Allergies to anything that goes on my skin that is fragranced or unfriendly, water retention, and more.
I function okay throughout the day. My laundry is on my floor again (on a clean blanket) waiting for me to get the energy to fold it all and put it away. But I still do readings, and I am grateful my 2 jobs are local and can also be done from home. I do work 2 part time jobs AND do readings/reiki, and freelance work. No, feeling awful doesn’t interrupt my ability to do readings or work because it isn’t physically demanding.
I am pretty chipper if you meet me and talk to me. Sometimes I am exhausted and grumpy but I forewarn people beforehand if I am in that state.
And, I never want anyone to feel bad for me. I press on!
I got a warrior ring/necklace from MantraBand and I am wearing it daily to remind myself I am a Chronic Illness Warrior, a Warrior for good in this world, and a Spiritual Warrior of awesome. Namaste.
P.S. Since I have realized that I didn’t “cause” these problems and they aren’t “MY fault”, I have been a little less stressed (like a smidgen), and less intensely looking for cures for these things. I have relaxed my approach to my health – which is actually serving me more than being an intense nut about it.
Health update & my next Ayurveda adventure
I have been flared up endometriosis wise for the last couple weeks. It seems the 2 days in a row of exercise from 2 weeks ago really angered it. I have had pretty consistent pelvic pain that feels like someone is dragging a steak knife across my pelvic area from the inside out or like I am being stabbed from the inside out with that same knife.
Additionally, today I am flaring in an unknown way. Which problem is causing it, I don’t know? I have read that neuropathy type stuff can come from endometriosis. This is more of a body-wide light nervey thing. That feeling when you touch your skin and it has a burning sensation, that alternates with tingly almost static kind of feeling and it hurts a bit too. It is weird. Usually passes in 24 hours, so fingers crossed it passes.
I have had a couple of days where I reached 5,000 steps but mostly between 2,500 and 3,000. Once the flares are quelled a bit, I plan on walking more and doing more gentle movement to get myself exercising again.
In the meantime, I had this notion that most of my problems were Kapha Vata problems, even though my assessments come out Vata Pitta dominant with a smidgen of Kapha. And I thought this for about a year or more at this point.
I get hot a lot and overheat a lot, so I don’t usually think much of it because it alternates. I usually store heat from the shower and get really red, especially in my cheeks. I can tolerate cold weather post shower for about an hour sometimes without a coat, after it wears off I am an icicle. Or I get red cheeks and hot from the neck up and am cold from the neck down and running a low grade fever. I also can’t exercise much without overheating, getting red cheeks and feeling that warm nausea. The most annoying thing is when my anxiety flares up and it causes me to run to the bathroom #2. And if I let the anxiety go, the #2’s will get more urgent, more severe – which could also be Vata Pitta.
…Then it dawned on me what might be going on.
I look at my tongue 1-2 times per day and I always have heat in the middle of my tongue (green/yellow) but a couple nights ago it was really thick.
I started doing research and learned that most of my problems are coming from a Pitta Vata imbalance.
My plan to remedy this is to eat more Pitta Vata foods, to do more Vata exercise, yoga, meditation, and work on my stress.
Also try to create a routine (the dominant Vata in me hates routine). Additionally, I got some Pitta digestive herbs to help nourish all doshas, and my intestines while helping me with the heat problem. I also got a tongue scraper. I can’t wait to get the herbs in the mail.
When you realize what is actually happening and why I am so exhausted all the time, things click. Now, I am not expecting a miracle but I think these will help improve my well being, even if just taking the edge off my long list of health problems.
Let me explain to you my thoughts and what I found:
Despite my assessment, I figured I was putting on excess weight (from the high fat diet my former doctor had me on) because Kapha was unhappy. Kapha may have been a contributor but Pitta doesn’t like high fat either, especially when my digestion sucks because it has trouble moving and processing it. In other words, between doshas not liking high fat and me not liking high fat, my stomach not liking high fat, and high fat feeding the estrogen and endometriosis in my body – I put on a lot of weight and it happened really fast.
I also thought that my sluggishness, allergies and metabolism being slow was Kapha, and while it might also be a contributor, these things, when Pitta is unbalanced and digestion sucks, can come from Pitta. All according to research I read online recently.
There is a delicate balance going on here. And being Vata Pitta Dominant and Pitta heat running amuck, and my digestion being slow, plus a bit of Kapha, here I am. But I never thought to try and remedy Pitta (heat).
I am trying to think of how to word what I see intuitively and visualize how this works.
I am quite high strung, have high anxiety, a million thoughts throughout the day, sometimes I have trouble sleeping because of them and long to do lists (even if I write them down). Plus, I am a perfectionist and a bit type A in most instances. I want things done now and done right. I am also always thinking of things I can research (something I love) and trying to better my health.
I get irritable (more like sad, down, and pissy) when I don’t eat and I am prone to being low glycemic. But because I am ungrounded and very floaty and running at 200 mph, I can go 6-8 hours without eating anything because I am on a mission to get things done and completely forget about it.
Then, I found online that Pitta (and Vata) prefer a regular eating schedule. I want to work on this, but honestly I am not sure how I am going to pull it off. Maybe set reminders on my phone to eat? And then what do I do when I have an appointment in the morning or work? I won’t eat before I go anywhere in the morning because it might upset the IBS rendering me unable to leave the apartment.
Even though I am shy around most people, once I get comfortable, I never shut up. And I am always rambling on about a million different things. I am like the energizer bunny, constantly going, but I don’t have any battery life left, I am exhausted.
I think though, if anyone functioned how I do in any given day, they too would get exhausted. I told my fiance I could never be in a relationship with someone who has a similar Ayurvedic profile as me because their constant “going” and never shutting up and being on “go” constantly, would be exhausting to be around.
Thankfully, my fiance is Kapha where I am Vata and he is Vata where I am Kapha. He is like a rock, very grounding, calm, stable, patient and thankfully tolerant. His Pitta is equivalent to mine, but his is in balance and mine isn’t. We balance each other out. We have been together since 2008 and I am grateful to have found someone so awesome.
I have been brushing up on my social media marketing knowledge and one thing I read was that, when we think we are ahead, we are actually behind. That killed me. Just thinking I am BEHIND on something makes me feel this wave of heat and anxiety in me that NEEDS to get things done NOW so I am not behind. And I would end up sacrificing my health, food, even probably ignoring nature and her bathroom breaks – all because of this horrid drive.
I truly wish I had a great doctor to help me. I am broke financially but could use the help.
With that, I will let you know how remedying my doshas goes. Have you had any luck remedying your dosha imbalances?
If the woman in this picture was blonde, she would be a good picture of what I felt like around 3:30 this afternoon (2/2/19).
I hit a wall around then and ended up with a flare up – mostly CFS/ME and EBV. Then as time went on a slight fibromyalgia flare came out.
Interestingly, I am still working on losing weight (after my old doctor’s mistake). I exercise when I can, how I can, and this week I did 2 days of exercise. BUT I am still 110% committed to doing the old Weight Watchers Momentum/Flex Points from the early 2000’s.
I am happy to report a steady weight loss of 1-2 pounds per week. I have been doing it for about 4 weeks and I am down about 8 pounds and down around 9 inches overall.
I am still hoping Weight Watchers will make it so we can sign up for whichever Points program works for us because I have tried all of the others with no success. This one works for me.
Here are the before and after pics. (above)
In the meantime, other than working, doing readings tomorrow, reformatting my website again, and watching the Super Bowl, my goal is to write my whole story about Endometriosis and the other many line items of problems I have.
Ask Jess Question:
So I have endometriosis and I hoping one day their is a cure or a good treatment. Endometriosis has taken over my life. I sit here and hope and pray that I can have another child. I do have one son (my miracle baby ) I wish I can give him a bother or a sister but since my endometriosis is really bad. I was told I can't have no more babies and it makes me sad. Do you see anything happening with endometriosis? Or any chance I would have another baby.“
11/08/16 Jess’s Response:
(You've been forewarned - this is incredibly long.)
As someone with Endometriosis too I can say that I have done a lot of research on it and been on every treatment possible with very few exceptions - as I have refused IUD's and also the one that is the size of a match and they implant it in your arm. Otherwise, I have tried them all - shot after shot, pill after pill, surgeries, etc. and here is what I have found most helpful:
Treatment - the most effective I have been on is aygestin. It is a synthetic form of progesterone called progestin. (Personal communication, Dr. Laufer, Boston BWH)I have also found Femara helpful but you would have to combine it with something like a progestin or pill/shot of some form. Femara is an aromatase inhibitor and it works by blocking estrogen or restricting it in some forms. You can look it up online. :) It is used also for women who have or had breast cancer and the femara starves the body of estrogen. (Ailawadi, Jobanputra, Kataria, Gurates, & Bulun, 2004) Depo provera can help (Personal communication, Dr. Boyle, MGH Chelsea, MA) but it is birth control. Aygestin is not birth control. (Personal communication, Dr. Richman, Hallmark Health, Malden, MA)And Depo may require you to take calcium and vitamin d with it (Personal communication, Dr. Boyle, MGH Chelsea, MA), similarly to Lupron Depo but not nearly as bad for bone density loss side effects. (Personal communication, Dr. Laufer, Boston BWH)With Lupron you have to take a lot of calcium and vitamin d just to offset some of the potential bone density loss. (Personal communication, Dr. Laufer, Boston BWH) It doesn't mean you will experience the bone density loss but it is always good to prevent it…(Personal communication, Dr. Laufer, Boston BWH)
Additionally: It is important that I mention to you a drug that is in trial right now called Elagolix. (Found through personal internet research.) It has been in trials for the last couple of years and I try to keep up to date on treatments available - especially this one. It is looking very promising in its treatment (Moore, 2016) - not only while taking it but [last I read - about 8 months ago] it seems it can help keep the endo suppressed even after taking it. It is not clear for how long and the like as it is still in clinical trials but it looks like it can be a promising drug and treatment for the disease. (AbbVie, 2016)
[2/2/19 Comment – Elagolix has been FDA approved after it was fast tracked for approval. Some women are finding it helps them be pain free, but please keep in mind, this is basically a pill version of Lupron Depot. Seeing it from a positive perspective, Lupron made me feel like I was dying but the shots were 3 months each, at least if the Elagolix pill isn’t working or if the side effects are worse than the benefits, at least it is a pill and you can talk with your doctor about changing your treatment sooner than if you had to wait for the shot to leave your body.] (Erlangs, 2018)
2. Holistic Treatment - this is where things get interesting. So while you have the regular Western medicine treatment (and I highly recommend it) pair it with the following:
A: Go through a elimination diet. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) There are many online but Dr. Weil and also the University of Wisconsin Medical Center for Integrative Medicine are the ones I have done. (Lifestyle, 2016) I have done the ACIM one most recently (I attached it to this email because the link URL is giving me a hard time.) (Lifestyle, 2016)
B: Go green with cleaning products and anything chemically oriented. Endometriosis and people with it tend to be more sensitive to chemicals, fragrances, etc. (Association, 2005) and so doing things like: not wearing or using perfume or scented/fragranced products unless they are naturally scented - using things like pure essential oils, buying organic foods - especially produce and packaged products is important, organic meats, eggs, dairy, etc. this way you get less crap in your system and/or there will be less crap for your body to process. Essentially you want to give your body a break and having to ward off the chemicals and everything around you is one big key. (Personal communication; Bamboo Clinic ND, Brookline, MA) Cleaning products - go natural or green, like Stop and Shop here has Nature's Promise products, Seventh Generation is good and there are others. You can also make your own products too. And you want this to be for everything from the soap you clean yourself with (unscented, gentle, etc.) to your laundry detergent, all purpose cleaners, dish soap, etc.
C: For inflammation: Ask your doctor if you can try Dr. Weil's Anti-Inflammation diet. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) http://www.drweil.com/health-wellness/health-centers/aging-gracefully/dr-weils-anti-inflammatory-diet/ (Lifestyle, 2006) Women with Endometriosis tend to have some inflammation and pain.(Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) This can help. It is likely best to do this after completing the anti-inflammation diet. So you would do this and essentially eliminated anything you found that bothered your body. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA)
[2/2/19 – Additionally, I found research that suggests women with endometriosis can benefit from being on a low-fat diet. And, that our immune system may be attacking the endometriosis tissue/lesions that are displaced in the body. (So the immune system doesn’t attack the endometrium of the uterus but it may be attacking endo cells and growths that are outside of the uterus.](Davis, 2018)
CC: Inflammation II: Ask your doctor if you can try Turmeric as a supplement. (Swarnakar & Paul, 2009) There has been at least one study I read that said if you pair Turmeric (curcumin) with your other treatment (I am not sure if it was the pill, progestin, the shot, or femara) but I have tried it too when I had a big endometriosis problem last year and I took it with a low dose of Advil and thankfully I wasn't in much pain at all - where before not even 1,000mg of ibuprofen would dull the pain. Turmeric can help. (Swarnakar & Paul, 2009)
D: Rebuild - GI, reproductive, etc. with pro and pre biotics. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) Years of antibiotic use and eating not-so-healthy foods, and a million other factors like stress can give our digestion a run for its money. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) And so rebuilding our gut health is important because the gut is kind of like a second brain. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) It helps us with our immune system (I have read that most of our immune system is in our gut), it helps us process foods, extract nutrients, and more. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) So a good healthy gut can help us have a good healthy system. Ask your physician for a recommendation for probiotics. (Hyman, M.D, 2015) I take Florastor 1 pill in the morning and 1 at night and 1 Renew Life Ultimate Flora Extra Care Probiotic 50 Billion only for about 2-3 weeks and sometimes paired with l-glutamine to rebuild the lining of the intestines. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) I tried another brand of 10 strains and it bothered my body so I had to stop. But these work very well for me. And there are a bunch to try. Ask your doctor for a recommendation. Be careful! Some have to be refrigerated. (Found from reading labels.)
And then you got to give those good bacteria something to munch on. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) This is where prebiotics come into play. I eat organic cereal with inulin in it. Inulin (chicory root fiber) can cause wicked bad bloat and flatulence but if you take it with a probiotic that may not end up being a problem and they can work together. Other prebiotics you can look up online but some are like raw garlic, onions raw or cooked and more. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA)
E: Stress: This is a huge thing. I read a study that was on the Endo Association (endometriosisassn.org) website and it was about how stress affects endometriosis. There were three mice: 2 mice they gave endometriosis and 1, the control had no endometriosis. They found that when they gave one mouse with endometriosis, the endometriosis not only grew faster but the pain and symptoms were significantly worse than for the non-stress induced endo mouse. Stress is HUGE for endometriosis. (Long, Liu, Qi, & Guo, 2016) I would recommend the following from years of personal experience: Walking, yoga, meditation, massage, Reiki, reflexology, guided imagery, tai chi, qi gong, acupuncture, acupressure, mindfulness, MBSR (Mindfulness Based Stress Reduction), The Relaxation Response by Henry Benson, EFT (emotional freedom technique), deep breathing, journaling, exercising, enjoying nature, aromatherapy and more - all with the intention of stress reduction. There are tons of ways to reduce stress. You can benefit highly from doing whatever you can to reduce stress. (Long, Liu, Qi, & Guo, 2016) (endometriosisassn.org)
And make sure you surround yourself with good, positive, well intentioned people. -Because the opposite will only contribute to your stress. . (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA)
F: The metaphorical: I have been told by my herbalist (acupuncturist/herbalist) that most women she knows who have endometriosis, such as myself, have some kind of mother relationship issue. (Personal communication, Megan Smith Lic.Ac. Dipl.OM; KenKoDo Clinic, Broadway Somerville, MA) Personally, I grew up with a mother who had multiple personalities and was dissociative. She had been sexually abused as a child, leading her to be dissociative, depressed, etc. during my childhood and I don't have a relationship with her now. And so working through any mother issues, relationships with mothers, and the like are important. It doesn't mean you have to reach out to them or anything, but more of heal from within with regards to the disharmony. (Personal communication, Megan Smith Lic.Ac. Dipl.OM; KenKoDo Clinic, Broadway Somerville, MA)
If I remember correctly in Louise Hay's book "Heal your body A-Z" she too had a similar metaphorical reason for endometriosis. But the cool thing is that she offers affirmations for it and in her book "You can heal your life" she explains how to use affirmations for just that (and other issues or "dis-ease").
G: Other Medicines: In addition to Western Medicine, I have personally tried a lot so don't forget you can pair it with the likes of Traditional Chinese Medicine (acupuncture, herbal prescriptions, food recommendations, and the like; And Ayurveda (India Medicine) - food therapy, herbs, self massage, daily routines, etc. The goal of both is to identify patterns of disharmony in the body as a whole (mind, body, spirit, emotion). They do it from a similar but also different way. You can go online and take a Ayurveda body type assessment (Douillard, 2011) and from there get recommendations of foods, routines, etc. And you can consult an Ayurvedic Practitioner. You can also go to a TCM acupuncturist and/or herbalist and get an assessment (they will ask you questions, take your pulse, look at your tongue, etc.) and they will make recommendations for food, lifestyle changes and the like as well. You can also use acupuncture points (using magnets, earseeds, press balls, acu-pellets, or needles - only by a licensed practitioner) and the professional can tell you which points you need and why. The goal of TCM and Ayurveda is to balance the body as a whole.
Don't forget Integrative Medicine (using herbs, food therapy, exercise, etc.); Functional Medicine (rebuilding the gut and GI system first and then treating more); Naturopathy (a whole body approach - food, exercise, emotion, etc.) -Homeopathy and more.
The trick is to learn from each professional and come up with treatments you can do. I went to a Naturopathic Physician and she told me I had intolerances to gluten and dairy and that I was vitamin D and vitamin B12 deficient. (Personal communication; Bamboo Clinic ND, Brookline, MA) She was right. The problem I had was that it was 10 years ago and gluten free food, food allergies and intolerances weren't as popular then so I didn't go completely gluten and dairy free until July 2009 and egg free not too long after.
G2: Nutrition and Water: Eat good things and drink plenty of water. Nix artificial sweeteners, and "natural" sweeteners. Unless it is pure organic cane sugar, pure maple syrup, or organic local honey don't use it. (Personal communication,, Acupuncture interns from the New England School of Acupuncture) and . (Personal communication, Megan Smith Lic.Ac. Dipl.OM; KenKoDo Clinic, Broadway Somerville, MA) And even use the real sweeteners sparingly. Sugar is awful for endometriosis. . (Personal communication, Megan Smith Lic.Ac. Dipl.OM; KenKoDo Clinic, Broadway Somerville, MA) It just aggravates the body and so keeping it to a minimum is optimal. And trust your body - if your body likes raw food, and then go raw. If your body likes cooked food, then cook it. If your body likes partially cooked food (and by food I mostly mean vegetables) then partially cook it. There is no strict win that will work for everyone. We are all different. And so getting this in check and doing the above (elimination diet, etc.) will all help. And try to cut soda, caffeine (unless your doctor says you need it), etc. Try to stick to water, coconut water, or maple water.
H: The "Whole": So if you pair everything above, you can figure out what works for you. I take TCM herbs and I have an herbalist who writes me TCM prescriptions. I also have a primary care physician who is an Integrative MD who tells me to journal, to meditate every day, to exercise, and to get to the root of problems, and to rebuild my gut and more. I also have a psychiatrist now, who I am very grateful for. Full of knowledge and I was blown away with how much he knew. I gave him my life story in 55 minutes and all of my medical problems (endometriosis, fibromyalgia, vitamin deficiencies, stomach problems, migraines, hypothyroidism, anxiety (general with panic), hypervigilance, agoraphobia, and IBS to name the top handful (and my endometriosis specialist and reproductive surgeon told me that basically everything I have is well connected and many women have the same or similar issues and endometriosis is usually the base) and he put all the pieces together and the first thing he asked me was "do you dream a lot?" I said "Yes, I work through a lot in my dreams. I tend to repress a lot." And then he said "do you get attacked in your dreams or do you dream of being attached?" I looked at him blown away. I told him how I used to dream that my mother was trying to kill me and how it took over 15 years to get to a better place dream-wise with her (she did awful things to us here) and how my ex-boyfriend I would dream of him cheating on me, killing me, etc. and how I dream that I am being hunted down, chased and shot at often. I sleep but I don't usually get restful sleep. So after we chatted some more, he made recommendations and I took them. My doctors’ office has acupuncture there. I get massages when I can but from a local massage school (they are only $25/hr), and I do a ton.
The point I am trying to make is that there is no "one way" to do the treatment BUT there are many things you can do to help it. And I truly believe you can.
I would never ever say it is not possible for someone to have children. I have encountered many women with infertility or reproductive issues over the years (and I am only 30). And a lot of them gave up (stopped stressing) on having a child and then wound up pregnant. Lots of people who adopt end up pregnant too. It may or may not be possible to become pregnant but I never ever say never. (Personal communication, Acupuncture student interns and supervisors of NESA – New England School of Acupuncture).
I had a physician probably 6-7 years ago who had trouble conceiving (from MGH Everett, MA. Name kept anonymous) She told me she tried everything and nothing worked - not even hormone therapy. Then she decided to use a donor egg and she was implanted and pregnant in a flash. She had a beautiful baby girl and she was thrilled. Then they did it again for baby number two - got a donor, she got pregnant, had another beautiful girl. Then, out of the blue she naturally conceived without a donor - her third child. She said after she got pregnant on her own after years and years of hormone treatments and bad news about fertility - she said she would never say never, ever again. She said she will always say it is possible. She was in her 40's and had 3 beautiful little girls and she said going forward she would never tell someone that having a baby is impossible.
So what I took from that was- sometimes we need to stop stressing and worrying and just let nature take her course. Nothing is impossible.
I: Speak UP & Do research: Your doctor/s is only one person. I have observed through my own care that they only have short times in a day to talk to patients to respond to requests, etc. and they likely have hundreds of patients and they are usually incredibly busy. Doctor's cannot know everything; they also cannot be responsible for your health 100%. They cannot read every book, every new research article out there, every study, etc. it would be impossible for them to stay 100% current with everything in medicine. And with them having hundreds of patients and with hospitals and clinics making appointment times shorter - you need to be in the driver’s seat.
I told someone recently that the only way to get the care you want and need is to be strategic. If I wasn't strategic in my care I would be way behind where I am now. And how I got there was mainly through reading, researching, asking questions, swashing stigma (who cares what other people think - especially about mental health - the stigma is huge), and speaking up.
Every time I go to my physician for a monthly follow up (yes, once per month and a specialist like GYN, etc. as needed) I usually have a list of what I am taking (medications, vitamins, and other supplements), and a list of what I want to talk about and what I want to address by order of importance. I usually have stuff in mind to discuss but if I don't have it written down then I will completely forget what it was. Write it down. And if your doctor has an email or online messaging system - use it. It is not for emergencies but for minor things, updates or simple questions.
I am also strategic in getting appointments because my doctors are so busy that I have to be strategic - otherwise I won't get an appointment and I would never see them. You have to ask questions of the people on the phone, of the appointment setters - what is the best time to call for an appointment, is there a cancellation list? etc. It is all super important.
J: Remember we have: Mind, Body, Spirit, Emotion. And they all need love, care, peace, etc. And we can always touch our soul/spirit, do spiritual exercises, develop, etc. just like everything else.
In conclusion never be afraid to talk to your physicians. Never be afraid to help guide your own care, research your possibilities and present them to doctors. I learned research methods and design, applied statistics for psychology, data entry, analysis, and writing research proposals and even presenting them when I was in college. So my final semester I took extra classes so I could graduate early. I ended up researching endometriosis that year and I found that they were combining birth control with aromatase inhibitors like Femara and having awesome results. So I printed all the research, brought it to my specialist at Brigham and Women's and asked him if I could try it. He said they haven't tried it there before but he looked through the papers and said if I wanted to try it, he would let me. I did - it was great. And then because of this, it is now a treatment option for women with endo who go to Brigham and Womens and also Children's Hospital Boston Gynecology (where I was first diagnosed).
I would have never expected him to know about this research because he is jam packed with patients and surgeries and emergencies and he had a family and home life. But I never would have known it was good if I didn't look for it, research, present the data and findings. And the rest is history.
Keep in mind I don't expect anyone to really go take hours to research BUT when you have time - do some. Search "scholar.google.com" for endometriosis (or any other illness you have) and go from there. Read books on healing, forgiveness, reiki, TCM, ayurveda, naturopathy, etc. learn as much as you can and never stop learning. Learning is what will help you in the long run.
I actually plan to write a book about everything I mentioned to you here. :)
I knew it was going to be long but I didn't think it would be this long...
Namaste to all.
Here are some references:
Another rest day. Better than yesterday in some ways, but did pull a muscle in my back/front that upset the endometriosis. So no exercise today. Stay tuned. I love this picture though, it looks so cozy. :)
Today is a total rest day. Although I ran errands and have moved today, I did not exercise. I found exercising the last two days to be invigorating and reminders that I truly love exercising and fitness. But what I also realized is that my body prefers it if I exercise every other day.
Yes, I am flared up. It is not as bad as it could be (which is good). My lower back is flared which is mostly the endometriosis. My general body pain is from the workout and a bit of fibromyalgia pain. CFS is flared up and my face and neck are hot and my cheeks are flaming red and hot. And I am an icicle from the neck down. My neck is also sore which is when the EBV gets mad and I am extra fatigued. BUT it isn’t as bad as it could be. In all honesty, it isn’t close to the worst I have felt. So even though I am flared up today, it is still a win.
Will I exercise tomorrow? Probably. But I will decide what to do for exercise tomorrow and maybe tone things down a little or exercise every other day instead of two days in a row.
I plan on cooking basmati rice in chicken broth for dinner and I feel that will help remedy things a bit.
And, as a remedy for my ongoing path to more self-compassion, I got my Kuan Yin and Dreamcatcher Alex and Ani Bracelets in the mail today! Totally loving them. I got the Kuan Yin bracelet to serve as a reminder to be compassionate towards myself (something I struggle with). And the dreamcatcher because I love them and all things Native American. I tend to feel bad about money when I spend it but I decided to embrace the purchase and enjoy it when I can afford to do it. Namaste.
Have you ever wondered whether you were receiving guidance or not? Or have you ever wondered why you keep seeing the same things over and over around you? Well, that is your guides way of telling you to pay attention to that thing.
For example, if someone says to you – Hey, you got to check out this course. And then another few people tell you that same thing. And then you see ads for it online or on your phone, and then you hear an ad about it on the radio. Well, that is your guides way of saying – you need to take this course, you can benefit from it in some way.
I have been getting major signs to practice self-love, self-compassion. It started by my psychic advisor recommending I read The Power of the Heart by Baptist de Pape. I am in the middle of reading it, but I bought it in mid-December .
I put together a list of things for Christmas because most of my family doesn’t like to guess. But I didn’t specify anything I wanted over anything else.
After I bought the book, I received a Kuan Yin statue, a heart chakra Alex and Ani bracelet, and a colorful heart charm. All of which people felt pulled to get me. Kuan Yin is the goddess of compassion. I also received a daily calendar that I finally opened at the end of the first week in January, and its message was “Love Yourself”.
I also recently got one of the magazines I subscribe to and the theme for the month is Self Compassion. I woke up and looked at my Instagram feed this morning and the first post I saw was that Lokai came out with a Love bracelet with a ton of hearts on it.
Now, I know Valentine’s Day is coming, but still. There are a lot of signs that I need to do some heart work and learn self-compassion. So, I am.
I am working on reading the book. I meditate with my hand on my heart and explore it a bit. I am working on healing my heart and loving myself more. I also listen to guided imagery for the heart and also for self-compassion.
I find self-compassion to be incredibly hard. It is easy for me to be compassionate to or for someone else, but the opposite for myself.
Living with health issues forever – literally my whole life – I have found it hard to have self-compassion. In essence; I don’t usually feel well, sometimes plans get ruined because of my health, and sometimes my health gets in the way of a lot of things I want to do. I get frustrated with myself that I feel so awful, or if I can’t do something, my plans fall through, etc. And that anger just sits within. I don’t express it much but instead hold it in. (Which I am working on doing less.) Eventually my anger turns to sadness and I just cry my eyes out but over the years I have developed a strong resilience and it takes a lot for me to break down these days. Unless of course, the endometriosis is causing me some OTHER problem, or if I need help but refused to rely on others. Not knowing how my life will look in the future, if I will be better, the same or worse, also bothers me. But I am working on self-compassion right now and it is slowly coming about.
Sometimes we are our own worst critics. I think a lot of us are like that, though most of the time it is mental and we don’t usually show it. Practicing self-compassion, relaxing our expectations of ourselves, being kinder to ourselves and giving ourselves a break is incredibly important. I am learning to accept myself as I am, to have more self-love and self-compassion and to cut myself some slack.
Have you experienced signs from above that you need to do something? Can you benefit from learning self-compassion? Tell me about it. 😊
Just finished a great workout. Just because I have chronic illness, doesn’t mean I can’t workout, sweat and get strong when I am feeling up for it.
My favorite thing to do is a circuit but I do it at home. I like going to the gym but having a slight immune deficiency that runs in my family, I tend to get sick easily from going to the gym. In a way, it is kind of like a big petri dish so it is best for me to workout here.
You might be wondering – what is a circuit? A circuit is when we do a few minutes or reps of alternating exercises but in a loop per say.
I use the Gazelle first for about 10-15 minutes, then the tiny stepper for a couple minutes to get my heart rate up, then back to Gazelle for a few, then I do weights/resistance for a few exercises in varying reps but with a little speed to keep my heart rate up, then back to the Gazelle for a couple minutes, then the tiny stepper, then weights/resistance and I will do this cycle for 30-45 minutes. The weights/resistance I do vary each time. I do all muscle groups separately, in a cycle. Then I walk around for 2 minutes and follow it up with 15 minutes of gentle yoga and stretching.
I have everything here for a great workout: Gazelle Edge, tiny stepper, tiny stationary bike (both are basically just pedals -you can get them on Amazon), hand weights, resistance bands, Pilates ring, yoga mat, yoga blocks, yoga strap, stability ball. I also have a jump rope and a bunch of other stuff. Plus, my fiance and I have been working out individually and together for a long time – we are no stranger to working out. I just haven’t worked out as regularly in recent years.
Lastly, because my Garmin Vivosmart tracks stress, I watch that too. And my body tends to register exercise and post-exercise as being under stress. So I meditate for 15-20 minutes after yoga to get my body back in a state of rest. I will keep an eye on it for at least an hour post-workout because it will creep back up to a stressed state if I don’t.
Interestingly, I was okay yesterday (1/23/19) despite the flare from the evening before and my CFS flare was easing up a bit. Though still extra tired and hard to move, I decided to run to work and drop something off. Well, little did I know my bowels had another plan. Half way there I had an IBS flare, out of nowhere. Thankfully I was close to my dad's house to make a pit stop but I never made it to work.
I did, however, use that restless energy to do 1.5 hours of pacing around my dad's house (what I do when my stomach and bowels are in disarray) and I then decided to see if I could make it home - which I was able to do.
It is instances like these, the unpredictable IBS problems that make me agoraphobic. (Afraid to leave the house in fear of not being able to find a restroom in a sudden moment.)
Some back story: when I was 6 months old I had an intussusception - a rare medical problem in which the intestine telescopes into itself causing an obstruction. I ended up having 6 inches of my colon/large intestine removed and it was fused back together. While they were in there, they took out my appendix for good measure. (We don’t need it anyway, and while it was fine, they figured they would save me a potential additional emergency surgery.) Ever since then I have had bowel and stomach issues. My life has been IBS, bowel problems, food sensitivities, and a connection between being nervous/anxious and it sparking a #2 in seconds which gets more severe the longer I am anxious. But it goes both ways. So if I have a normal BM situation, I feel a wave of anxiety with it too.
It was in therapy that I realized I have been agoraphobic the whole time – even as a kid. But all for the same reasons. I hated field trips and bus rides. Going to school in the morning was rough. Kudos to my dad for always dealing with me and I never rode a bus to school, dad always took us (mom wasn’t mentally there most of it, and she left our family in the late 90’s early 2000’s.]
I had a hard time everywhere we went and I have used every bathroom on most highways from here up to New Hampshire and back. I have had IBS problems everywhere too – every friends house, every family members house, on the way to or on the way home from their houses, at the mall, most stores I frequent, etc. And I have been stuck in every situation imaginable which makes me feel more agoraphobic.
By situations I mean: 2 times Red Sox opening day. Took me 2.5 hours to get home from school, even longer to get there. Construction on Route 9 in Brookline causing my commute to school to be 25 minutes to 3 hours. I sat in a blizzard on my way home once that took, no lie, 4 hours. I was rerouted one day on my way home around Boston/Cambridge only to find out later there was a bomb threat at one of the hotels. I have sat in hours of traffic everywhere. And I find it to be a living nightmare. This is why an RV looks so good.
There is a wonderful article/story online about a woman who I find myself similar to in many ways and I loved the story. Her husband got her an RV and she took it everywhere. (Essentially, for those of us who have bowel issues, it is a restroom on wheels.) And it is comforting to know I am not alone. Another reason why I am telling my stories now. (You aren't alone either.) https://www.thecut.com/2016/06/what-its-like-to-solve-your-crippling-agoraphobia-by-buying-a-motorhome.html
People don't talk much about their bowels but bowels are like anything else. We all poop. And I think it is time people talk more about it.
So in my IBS flare with restless, high stress, anxiety ridden energy (for me BM's correlate to anxiety and vice versa. I can't be nervous or anxious without a bathroom run or ... many of them.) I used that energy to pace about 6,000 steps according to my Garmin and then I used it to clean up my room, fold my laundry (from yesterday's post), take out the trash and make some rice I didn't end up eating.
It happened around 4:15-4:30pm yesterday. I paced from 4:35ish until 6:00pm. I drove home (about 10-15 minutes or 30 with traffic - my enemy.) I got home by 6:25-:630, folded my laundry and put it away, cleaned up my room, took out the trash, made sure my fiance fed Jinxy (which he did) and then by 7:30 I hit a wall and crashed.
I nibbled on tortilla chips, sipped ginger ale (both are what I consider 'safe foods') and we watched The Rookie which was good but didn't help my stress. And then I ate plain gluten free vegan waffles while we watched The Masked Singer. Followed by bed.
What caused the IBS flare? I have no idea. I think I will eliminate eggs from my diet for a couple weeks, not take supplements (which sometimes bother me), and simplify, if you will. Simplifying seems to work best for me. When I try too hard to improve how I feel, it doesn't usually work well and something like this might happen.
Thankful still and highly grateful I can and do work from home.
If you have medical issues - never give up trying to get better but also try not to beat yourself up about it.
What I am learning and having trouble with most is self-compassion. I get mad and impatient with myself because I don't feel well or because I didn't make it to my destination. But I need to learn to be kinder to myself. I am working on it.
What I wish my closet looked like.
Instead, my clean laundry is neatly piled on my floor on top of a clean throw blanket.
Yesterday evening I had a really bad CFS and fibromyalgia flare. I worked during the morning and afternoon and when I got home from bringing my fiance to drop his car off at the shop, I felt like I'd been hit by a train.
Extra heavy fatigue. Extra awful pain and stiffness everywhere. I felt 'over done', overstimulated, and like walking was being done in sand on a windy day with the wind coming towards me.
I rested for about 45 minutes and made a quick dinner of gluten free and dairy free French toast with egg whites.
I just finished my laundry and my fiance and I divided up what needed to be done in the house. I volunteered to clean the litter box.
After eating I rested for about an hour and got a wave of energy and used it to do Jinx's litter box. My fiance helped me with the new litter, which when new, can be a very heavy box when you feel like death warmed over.
No energy left. So my laundry is sitting on my floor waiting for my next wave of energy.
Getting to work soon. I am grateful that I work 2 part time jobs that are local and can mostly be done from home. Both of which are computer oriented and are not physically demanding.
I am still flared up but it comes in waves. Hopefully I'll get energy to fold my laundry and put it away. In the meantime, we do what we can.
No, I don't want my fiance folding my laundry. I do things on my own and if I need a bit of help (like lifting kitty litter) I will ask for it (which isn't often).
I posted this because it's real. And I know I'm not the only one with chronic illness.
I have endometriosis, fibromyalgia, CFS/ME, anxiety, agoraphobia, depression, EBV, food allergies, food intolerances, IBS, migraines, allergies, and more.
I try not to let them impact my day but sometimes they do. Onward and upward.
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