How many of us fighting fibromyalgia are also fighting endometriosis? What is that like and how do we deal with it? Amanda Pratt LCSW, CPLC, has so graciously answered my questions about her endometriosis and fibromyalgia symptoms. Amanda gives us some amazing advice and tips on dealing with endometriosis symptoms.
Absolutely. I’ve had to completely change my lifestyle, mindset and activity level to accommodate and reduce symptoms. I can’t work a ‘regular’ job due to my need for frequent rest periods. Also, I have a hard time making and keeping friends due to people just not understanding how my illness affects me. I experience pain daily and the fatigue completely cripples me when it comes up unexpectedly.
I suspected I had endometriosis since I was 16 but doctors would either tell me to just deal with it (because there wasn’t any viable treatment options) or they couldn’t do the surgery because I didn’t have access to health insurance. It took 13 years to get an Endo dx.
The Fibro dx happened within a few months of symptom onset (I had access to a great doctor at the time I was in grad school) and the Lupus/RA overlap Dx came a couple years after symptom onset, because doctors were ‘wishy washy’ on whether it was lupus or something else acting like lupus. When I responded to lupus treatments favorably, they made the official dx.
I take Cyclobenzaprine daily, which helps with both my Fibro and Endo and some of my joint pain. I also take prednisone daily or every other day at a low dose and dose higher when I’m in a flare. In addition, I take a DMARD called Minocycline to help with my RA/ Lupus Joint inflammation. I take levothyroxine for my hypthyroidism. I’ve found that if any of these meds are missed, the cascade of everything effecting everything else begins and my functionality declines.
I’ve tested positive for anemia since I was 16 and they always told me ‘you’re just anemic’ – whatever that means – but I do personally feel it is connected to my chronic health conditions – especially my lupus and endometriosis. My platelets also are low and so is my blood pressure, especially in a flare.
I think I was 12? I started having pelvic pain prior to starting my menstrual cycle, but they couldn’t figure out what caused it. Ultimately, I don’t want children so I haven’t encountered fertility problems due to it not being an aspect of my life.
Don’t give up hope – know that the healthcare system is NOT set up for people with chronic health concerns. The louder and more persistent we are about demanding adequate health treatment, the more they will be forced to listen to us and do something about it. There is power in numbers and also power in sharing our stories.
This is a guest post from a fellow Fibromyalgia Warrior. Vicki tells us her journey with her mental health issues. In addition, we learn how hard it is to get diagnosed when you have fibromyalgia and then get appropriate treatment. Vicki tells us how the trauma in her life has exasperated her fibromyalgia and other ailments.
I was diagnosed almost a year and a half ago; after a year and a half of going to different doctors and saying, “I think I have fibromyalgia or Chronic Fatigue Syndrome, or both”. Most of them didn’t listen to me. My PCP didn’t diagnose either one.
It started with my legs swelling enormously after a plane trip to PA for camping. All through the trip, I was exhausted, working on schoolwork, and using a cane to get around. It’s not the first time the cane was needed.
I already saw a neurologist for migraines and sleep apnea—so I was already using a CPAP but still falling asleep during the day. I was already seeing a Psychiatrist, and Psychologist. They both thought that my medication regimen was fine. They sent me to see a nephrologist for the swelling in my legs (fine), a cardiologist (fine), a colo-rectal specialist to make sure there was no bleeding (fine), my gyn (fine), and finally PT for lymphedema treatments (didn’t help).
Ultimately, I ended up having to sit in a recliner with my legs elevated still higher on pillows, still in incredible pain all over, I couldn’t put my legs down (and still can’t for the day) or they would swell. Finally, I had to wear compression stockings as well, and I bought my own TENS unit for pain. I got a prescription for a cane and a walker and started the process for disability. I finally got in to see a rheumatologist—first available appointment was in 4 months.
I was first diagnosed with depression and anxiety by my personal doctor (in a state I am not currently living in), in 2005, just after my mom died. I went to her because I was having difficulty coping with “work, school, and home”. She thought it was just short term and prescribed me some anti-anxiety med and something for depression.
When my (now) ex-husband found out about it, he threw the pills away and told me that I didn’t need them—that I just needed to straighten up my life. He was extremely abusive and suspicious of everything I did. So I started getting the medication filled at the hospital I worked at, and taking them at work (I kept them in my desk drawer). I would hide pills in my pocket to take on my way home from work in the morning. I couldn’t take them at home, because he would make me empty my pockets when I got home.
I started having trouble keeping a job. I went to work as a travel nurse initially, so I had time to look around at the hospitals in the area, find out who was hiring and what was available. The travel assignment was working well for me, so I signed up for a second assignment with the same place…that’s when they started breaking small parts of the contract. Since I worked night shift, there was no one to talk to when it happened. The hospital felt vindicated because staffing was low.
I was floated to areas where I had no experience and given patients I should not have been taking care of. My company didn’t really stand up for me, but they were understanding. They told me just to break the contract without any repercussions, but they didn’t have any other assignments in the area. I took an interim job in a nursing home to cover the next three months.
During that time, I was sick more often than not. My doctor said: “Your immune system is shot. You have been in fight or flight mode for too many years. Now your body doesn’t know how to behave.”, he had no other advice. I thought, I’ll just have to live with it and get over it. He changed my psych meds and sent me for counseling which did help somewhat, but I never really connected with my counselor and I think it was too soon to talk about all the trauma I’d been through.
After being “unlawfully fired” from my next job, and collecting unemployment; I was also fired during my 90 day probationary period from the next job, while I was out under doctor’s orders. Since it was probation, they were allowed to fire me at will. At my next job, I was also frequently ill. I was working at a children’s hospital so I didn’t think too much about it.
That was the year I came down with H1N1 flu and almost ended up in the hospital with adult RSV (yeah, adults can get it), I had shingles (unusual at my age), found out I had thyroid disease (but not in-depth studies), and saw a cardiologist for the first time. You see, when I lived back on my own down in the other state, I respiratory arrested one night at work. My heart never stopped beating, but I stopped breathing—and came to in the ED with the code team working on me.
Everything was fine and nothing showed up. They observed me in the ED for the rest of the night and let me go home in the morning. When my current doctor heard about it he sent me to a cardio, and I went through all the testing and everything was fine. No one has ever found a reason for my sudden, almost death.
The doctors decided that it must have been the start of my immune system rebelling. Even at the children’s hospital the Infectious disease specialist asked me if I had an immune deficiency and I told him not that I knew of. I had myself tested for HIV, and all the Hepatitis stuff just in case (due to my ex). Everything was clean. Of course, we were constantly changing my psych meds because it was very hard to control my anxiety and depression. I was diagnosed with PTSD in 2009.
In so many ways! The first time I saw the rheumatologist he said I had a severe case of fibromyalgia. Severe? I started with severe? All 18 markers were positive. Sadly, I was already walking with a cane most of the time. In addition, I had already stopped working. I couldn’t go back to work until I had my health under control—I would miss too many days and be fired.
I can’t even plan for part-time or PRN nursing because they count on you, and I really can’t be counted on for any particular day. Everything makes me tired. Walking the 10 steps from the chair to the bathroom is an effort that wears me out. I can’t sleep flat on my back anymore, I have to sleep in the recliner. I’m incontinent at night. My right leg and right arm (dominant side) seem weaker to me. And they both go weirdly numb at odd times of the day for no reason.
I can’t wear jewelry because it just hurts. I have to wear loose and soft clothing because clothes hurt my skin. Taking a shower is horrendously painful because it feels like needles are hitting my body—like when you have a sunburn. Now, I don’t drive because of the medication I’m on, so I’m dependent on my husband. I can’t stand in the shower, so I have to have a chair. I get short of breath and tired easily. Getting dressed can be horrible. If I am wearing pants—my husband has to pull them up for me, very often. I’ve gained weight.
I have a hard time concentrating on anything. I did finish my BSN and started my MSN—but it’s in teaching nursing; so, I can’t finish it. I can’t do the clinical portion. I’ve lost touch with friends. I’ve lost friends because I don’t have the same things to talk about. This makes me feel isolated and alone most of the time. I am angry that it has taken two years and two denials, and a hearing and I still don’t have social security. They don’t see all of this as a disability. I am mostly afraid at how much worse this can get, and how it will change my husband and my lives. He is also disabled and considered unable to work per the VA.
I still haven’t pinned down what puts me into flares, although they have become less frequent with time. I know that I have more flares when I am overstressed. Right now I have stopped taking classes for my second BA, and am just trying to relax. Otherwise, I have no idea.
I was exercising sporadically prior to my diagnosis. I did yoga occasionally and walked occasionally. I always got in at least 10,000 steps at work at night. I’ve been encouraged to exercise, but I can’t walk. I got a stationary bike (because I’m unstable on my feet), and I sometimes go to a friend’s house to swim. I can’t do yoga anymore because I can’t get on the ground (because my right leg doesn’t work right).
Because of my PTSD, I am fearful of going alone places, I don’t like to be in crowds or with people I don’t know, I don’t answer the doorbell or when someone comes to the door (unless I know one of our friends is coming). I used to hide in a back room—but over the last 10 years that’s gotten better. I wouldn’t shower while my husband was away from home. I have to sleep in view the door no matter where we are and how many people are with us (camping). I still sleep poorly due to nightmares on a recurring basis about things that happened or could happen in this reality—and then sometimes dream him into parts of this reality he isn’t involved in.
When I was able to be very active (and when I was working—not that long ago) exercise did not help. Keeping myself from getting overtired DID though. Regular sleep schedule helped a lot. Meditation and breathing exercises to help with the anxiety helped as well. If things were particularly bad, I would do a reiki session on myself (I am a reiki master). I don’t know if diet helped—but moderating alcohol is always a good idea. Counseling helped once I found a female counselor who was able to work well with me.
When I am having a particularly bad flare, I find that my night-terrors and nightmares increase. My anxiety during the day does not seem to increase to me, but my current husband said it does (when I asked about this). When my depression is really bad, my pain is so much more noticeable. When one part of the system has a breakdown, the whole system has a breakdown. It is always true in life. When you have a cold—don’t you always feel awful all over, even if it’s only a head cold?
I currently take Lyrica for my Fibro, which is relatively new. It is helping tremendously. I had to fire my rheumatologist to get Lyrica—he wouldn’t give it to me. I take it twice each day. I also take Methotrexate once a week, and Plaquenil once each day. I also take Baclofen as needed three times a day in graduated doses for muscle spasms and stiffness. Pilocarpine for dry mouth and eyes three times a day and I use drops in my eyes. I use Cannabis for pain control (sparingly).
Previously, I was on Plaquenil twice a day, Gabapentin three times a day, Pilocarpine three times a day, Baclofen 20mg three times a day (not as needed), Tylenol with Codeine for pain every 6 hours, drops for my eyes, Meyers Solution infusions once per week. I found out that the Meyers Solution was just the vitamins I was already taking and stopped them because insurance wouldn’t pay for that (and it was over $100 each infusion).
I was started on Methotrexate pills once a week (what I’m on now). My “numbers” weren’t improving, so they switched me to injections weekly. I was still having pain so they changed my prescription to Imuran. I was on that for six weeks—in constant agony, pain was worse, nausea uncontrolled, it precipitated migraines, and I literally could not eat. Now I do take a med (not for diet, but because I can never stay awake) that curbs my appetite. But while on Imuran, everything either tasted like it was rotted, or just the smell of it turned my stomach. Also, the swelling in my legs started again and got worse. I haven’t gotten it under control yet.
The current preparation of medications I take now, along with Cymbalta in the morning, helps more than anything. It’s not perfect—but I doubt that anything will be. I haven’t found out what precipitates my flares yet (I guess I haven’t been diagnosed that long?), besides stress. My immune system was already not great before I started taking drugs that can suppress immune responses (Methotrexate and Plaquenil); so that’s a concern. I currently don’t have a rheumatologist—but my primary care said that she’s never had a patient that was happy with one in the area. She’s also never had one that worked well with her on a holistic approach to the patient as far as care goes; so she usually is the one that has to monitor and change all her medications to fit his profile. My neurologist said the same thing.
Find doctors who COMMUNICATE with each other to treat the WHOLE person!!
I’ve been being treated for my mental illness for much longer than my fibro. However, when I received my diagnosis, the Psychiatrist I was seeing at the time changed my medication to Cymbalta at an equivalent dose to my previous medication. Cymbalta does have some pain control properties and is used for long term pain patients. Recently, due to the problem with chronic fatigue, my anti-anxiety medication was changed to Valium because with long term use it tends to cause less sleepiness or drowsiness than immediate (or as needed) medication, or some of the newer meds for anxiety. A Psychiatrist I saw previously had recommended Welbutrin and Abilify for my depression. All of those together just made me into a functioning zombie.
I see a therapist for depression, take the Cymbalta and valium. That’s all now. My psych doc moved away and had a long discussion with my primary care. He said that she was fully competent to manage my meds unless I needed hospitalization again—In which case I would need to find another psych doc. We did try to keep me on the Welbutrin for a bit to see if it would help me quit smoking and overeating; but it didn’t—so we dropped it. It really wasn’t helping me so why take it?
I was hospitalized in early 2018 for depression. This happened when I went to the ED and voluntarily “Baker Acted” myself. I was also to ill to go to psych, so I had to be admitted to the hospital first (I had an abscess). Like so many of us with chronic illness with no cure; I just was feeling worthless and hopeless. We have financial difficulties. The house is a mess. Frustratingly, I can’t get up and cook dinner. I can’t exercise and I’m already overweight.
I was a productive member of society with a calling to heal and help people and it’s been taken away from me. My identity for my adult life had been wrapped up in my profession. Now…I felt like I had no identity. Sadly, I had lost most of my friends, or at least they were too busy except for the occasional e-mail, text, or short phone call. Then, I was bored with coloring pictures, drawing, reading and playing video games. I mean really—what use is that to anyone. I couldn’t help myself, much less my husband. And he was taking on greater and greater responsibility caring for me; when he needed care himself.
Did I have a plan? Not really, but I didn’t really need one because I had a drawer filled with toxic pills, right next to the chair I spend every minute of my life in. I didn’t need a plan. I needed a reason not to have a plan. This time talking to the people who loved me and hoped they could talk me off the ledge wouldn’t do it. I knew I needed help, so I checked myself in. It was a big step to check myself in to the hospital I used to work in. Scary. Even with privacy laws, in the workplace things get around.
I spent a lot of time going to every therapy session they offered—even if it seemed silly. I spent a lot of time talking to the director of the therapy department and the social worker. What I needed wasn’t hope. I needed a plan to change my way of thinking about my life. I needed help to see that I could still be vital. I needed to see that I wasn’t a drain…and I needed hobbies that didn’t just use time when I was awake; but challenged my mind and kept it going in vital directions. It was amazing. And the things I learned there are the things that I work on with my therapist still. They are the things that I try to work on still when I tend to fall into those dark thoughts.
I probably wouldn’t have been hospitalized for depression without the Fibro changing my life completely.
I have been almost constantly treated by a Psychiatrist since 2006, and a therapist that specialized in patients with PTSD on and off since then. I am currently seeing a therapist with the credentials of LMHC, LMSW and a Masters degree in Clinical Psychology. (Licensed Mental Health Counselor, Licensed Master of Social Work). She does specialize in patients with PTSD. She does use CBT, and others I have been to have used it also.
At this point, we only use the CBT therapy if I have recently had severe night terrors, nightmares, or flashbacks. If I have had anxiety attacks, we have to get to the root of the problem. Sometimes it does not involve my PTSD.
For me, at least initially, CBT was incredibly painful. That’s why I have seen therapists on and off. I was in an abusive relationship for what was about 20 years and almost didn’t live to tell about it. My most recent psychiatrist was very gentle with me about it. I expected that by this point, after over 10 years, that I would have progressed beyond the point that I have. He sat me down and said, “you were basically a prisoner of war for 20 years. Don’t minimize your pain or symptoms by saying that soldiers have been through worse. I have read the transcripts from your protective order. I don’t know of anyone who has been through worse, and lived. And you seldom complain. What is worse…you never talk about it.” I was ashamed that I had “let myself” get into that position. I blamed myself for my abuse. I blamed my abuser as well—but I had fallen into the trap that I should have left him earlier.
CBT makes you confront the worse memories of (for me) abuse, relive it, confront it, name it, see it for what it is, refuse to accept responsibility for it, and take control of that memory and detach yourself from it. I couldn’t do it properly for the longest time, and I’m still working on it.
CBT does help. But it took me years before I was ready to relive those memories. The only thing I can say is; the timeline is different for everyone. Be honest with your therapist instead of just stopping therapy.
I think that everyone who has Fibro needs to be in therapy of some kind, even if it is only speaking to a Pastor/Spiritual counselor if they have one. It can be so hard to deal with on your own. Our loved ones see it every day and live it with us. Other people with fibro go through it with us and support us. But it helps to have someone removed from our situation that we can talk to freely about how we feel; without feeling like we are burdening them. I know, for my part, that I don’t like to “complain” to my family and friends. As far as my fibro friends…we like to be positive and build each other up. But sometimes you just don’t feel that way. Without an outlet for the hard thoughts, and someone to talk them out with, the depression from just the pain and changes to our lives can spiral downward until it gets too bad to handle. There is no shame in therapy.
My mental illness began before Fibro entered my life. However, fibro has made it worse. It adds to my depression. Also, I have nothing to relate pain to except the days of my abuse. Pain is a trigger for me. In my sleep, if my pain becomes severe it will trigger night terrors or nightmares.
I’ve done extensive studies with my therapist and doctors. It has been shown that there is a possible link to people who have been through past trauma developing immune disorders later. Because I have PTSD, the immunologist was not surprised at all that I have fibro or other issues such as Hashimoto’s. Or that I have had shingles twice and that I get sick more often than most people. She put it this way: people who have been through past trauma are still fighting—even if they think they are not. In their mind, they still are. Their bodies are still producing, or have produced, a certain level of cortisol and reacting to the fight or flight response. The brain has no time to worry about “being healthy”, it is only worried about staying alive in the moment. The immune system can take over healing later. The problem is that the “later” never comes…and the body develops all sorts of immune problems. For some people it may be fibro, for some it may be lupus where none was in their family before…or they may have a genetic predisposition that the trauma switched on. Trauma, even if it is dealt with very early in life, can work like a switch to turn on predispositions in genes.
Nothing in our bodies are separate. The body works together as a whole system. There is always a reason for the “why” even if we can’t find it. Research into fibro is really in it’s early stages….infancy really. And we don’t know as much about mental illness as we think we do. ECT therapy was all the rage in the 40s-50s. Then it was considered barbaric for so long. Now we’ve found out that it actually does help with depression, done with sedation (much more humane) and at much LOWER dosages, targeted only at certain spots. Treatments for mental illness change constantly and new medications are coming out all the time.
The study of the brain and how it works have been separated in medicine for a long time. Neuroscience vs Psychology vs Sociology vs Genetics. We’re just now starting to put bits and pieces together to integrate some of those sciences. And believe me when I say that some researchers and doctors are not as helpful or happy about it. It’s a touchy subject, really, in the scientific community, because some of those things—like psychology and sociology—were not considered Science (with a capitol S) for so long.
LOL, I have so many things wrong with me I could write a book! But since my abuse, I have developed Hashimoto’s Thyroiditis and Chronic Fatigue Syndrome, and an addiction to nicotine (that’s a story for another day though?). I would say that yes, the unstable thyroid levels and CFS contribute to my episodes—they certainly make flares harder to deal with. I won’t include my undiagnosed immune problem here because—well, it’s undiagnosed! It may be a genetic thing.
I’ve had several MRIs, mostly to follow the progression of changes due to migraine. Honestly, the test you would need to do here would be a PET scan. It would also need to be compared to a previous scan (which I don’t have). If a study was being done, you would need a sample of people who had both mental illness and fibro, a sample of people who had only mental illness, and a control sample….and a large enough group of each. That way you could tell where the differences were. It would be an interesting study for a grad student thesis—or a doctoral thesis…But I’m not headed that way! If you know someone who is; I will volunteer for the study. I do have multiple plaques in my brain due to migraines. Not unexpected since I have had them since age 11 or so.
I am a nurse (retired), so I know a little bit about research and the sciences. Also, I am also a Reiki master, I’ve had acupuncture, I can help with answers about what I do for migraine relief, and I am currently studying herbal medicine (on my own). I do know a lot about drug-herbal interactions and what not to take with what. Please know that I am here for anyone who has suffered the trauma of domestic violence and needs someone to talk to. Or someone who is in that situation currently and needs someone SAFE to talk to . I’m not a counselor, the SAFE website, or affiliated with anything like that—so if someone needs my information privately (and I am very private) I am here to help in any way I can. I couldn’t get into a shelter when I left, and I was left with only the clothes on my back. Anyway…long story…maybe for another day…just know that I am here to help: for depression, for abuse, for fibro, for migraines, for anything. I was also adopted—so if there are adoptees out there wondering what the heck to do about finding out stuff; I’m your girl
You never want to hear your doctor say, “your brain MRI came back abnormal.” The fear and panic that goes through your body in this moment is overwhelming. My MRI revealed a pituitary adenoma. I know there are so many of you out there that have gone through this same situation and know just how I felt. For those that have never experienced this, I have written this article to spread awareness.
According to Cleveland Clinic “A pituitary adenoma is a growth or tumor on the pituitary. Most pituitary adenomas are slow-growing and benign.” Any adenoma bigger than 1 cm is called a macro adenoma. It is interesting that some adenoma’s can actually produce hormones, however mine is not doing that. Mine was detected because the adenoma is pressing on my pituitary gland preventing it from producing the necessary hormones I need.
In researching adenomas, I found out they are more common than I thought. According to the Pacific Pituitary Disorders Center 10-20% of the population has a pituitary adenoma and probably doesn’t even know it. I guess so many of these are so small they don’t cause symptoms. In addition, they are the third most common of all intracranial tumors. Luckily, 90% of these are benign and slow growing, which is most likely what I have.
My journey to an adenoma diagnosis started with a visit to an endocrinologist. This doctor did the most blood work anyone has ever done on me. He tested my hormone levels and that is where he discovered that my estrogen and progesterone were very low. At first, this was a comfort to me because it explained so many of my symptoms and why I wasn’t getting any better. I was highly emotional, severely fatigued, had extreme brain fog and several other symptoms.
It can be tricky because many of these symptoms are also symptoms of fibromyalgia. This is why it is so important for doctors to not put all of our symptoms in one diagnosis box. Too often, they are chalking it all up to fibromyalgia. Although, these symptoms will still be present with the fibromyalgia they wouldn’t be to the extent I was experiencing them and for the amount of time. This makes me so mad, I can’t even explain how mad. We really need to overhaul the United States healthcare system and doctors need continuous education! I suffered for much longer than I needed to be suffering. Worse yet, my concern was disregarded by my doctors and I was made to feel like I was exaggerating my illness.
With the abnormal hormone levels, the doctor suggested we do an MRI. He told me that best case scenario is that I have a tumor pressing on my pituitary gland and if so it can easily be removed. Of course, this sent me into a mild panic. However, he reassures me that it is a simple procedure where they go up through the nostril, remove the tumor and that takes care of that.
Going into the MRI and waiting for the results, I really didn’t know what I wanted the outcome to be. I know that I was kind of scared, but also really relieved that there was something tangibly wrong with me. Anyone that has an invisible illness can understand this feeling. Seeing doctor after doctor look at you and treat you like you are faking it, can take its toll on a person. I’ve actually had a primary care doctor turn me away because my case is too complicated!
To address my hormone levels the doctor gave me estradiol and progesterone that I have to take in a complicated way. Well, it sounded complicated to me. I start the estradiol on day 1 of my cycle (the first day of my period), then I start the progesterone on day 15. I take both until the 25th day of my cycle, then start all over again on day 1 of my period.
At first, I was super intimidated with my new pill schedule since I have such a hard time remembering to take my pills. By the way, I’m on my second month now and I’m actually doing pretty well at remembering (pat me on the back). So the purpose of these pills is to replace the hormones that my pituitary gland is not producing. However, like all pills, they have side-effects.
I have been experiencing migraine headaches on a regular basis and extreme menstrual cramping. I don’t know, if there was a worse word than extreme- I would use it. That being said, my symptoms are improving. My extreme mood swings are getting better and I think I’m a little more pleasant to be around. The other symptoms are hard to tell because they blend in with my fibromyalgia symptoms. For instance, I am still fatigued and forget the words for everyday items I should know the word for.
It was a long week waiting for my MRI results with all kinds of scenarios running through my mind. What it’s like only a person with anxiety can come up with. So, it figures that I would get a severe cold with a fever and not be able to go to my doctor appointment for the results. I had to wait longer. I called the doctor on the next Monday and we talked over the phone. The bad part of having this conversation on the phone is that your time is more limited and you don’t think to ask the questions you should ask.
My doctor told me that the MRI shows a 3 millimeter adenoma pressing on my pituitary gland. This is too small to operate on. Typically, an Endonasal Endoscopic Surgery is done. This is where they go in through the nostril to remove the tumor. This procedure is less invasive and has a high success rate. It figures that mine can’t be operated on. Not to mention, I forgot to ask how big it has to get to operate or how long it typically takes to grow like I should have. In the meantime, he raised the dosage on my medicine and told me we will watch it every 6 months.
I am stuck knowing there is something growing in my brain that should NOT be there. That sucks and is scary. I am also stuck with the side-effects of my new medicine that really, I have no choice but to take. Then there is my anxiety. I have to work hard at keeping it at bay. A person who has anxiety plays the “what if” game a lot in their head, so it takes conscious effort to not play that game.
Advocacy
The morale of this story is if your doctor isn’t looking for another answer and checking all the boxes, then find a doctor that will. If you know there is something else wrong with you, then don’t give up. I have no idea how long this thing has been growing in my brain, but I do know for the last year I have known deep down that something wasn’t right.
If any of this makes you want to get involved, then I have the perfect organization for you. Support Fibro is an organization that is dedicated not only to awareness but education. This is so important because like I said above doctors are not educated enough on fibromyalgia! I have even had a rheumatologist tell me she shouldn’t even be treating this condition. Please click the link for Support Fibro and if you are able, make a donation or find a way you can support the cause because a Fibromyalgia Warrior you love needs answers!
I have several chronic illnesses and have tried many different treatment options to improve my symptoms for all of them. My illnesses include: fibromyalgia, arthritis, endometriosis, hypopituitarism, pituitary adenoma, irritable bowel syndrome, rashes, restless leg syndrome and I think that is it, but I could be forgetting something. The medications that I have taken for these illnesses have caused me greater side effects than benefits. That is what led me to a holistic doctor and the Whole30 diet. This is my journey and the surprise I didn’t expect from the Whole30 diet.
Like I said above, I have tried many different medications. They caused me severe side effects to the point I could barely function. I have seen doctor after doctor who did nothing but push pills in my face and not listen. As a last resort, I made an appointment with a Holistic doctor and I was pleasantly surprised by this visit. Prior to the visit I filled out several pages of information from my medical background, my family’s medical background and my level of commitment to making changes to live a healthier life.
During the visit we talked about my past traumas and my current symptoms. This doctor recommended many supplements and an elimination diet (Whole30). She explained that it is possible some foods I am eating are causing inflammation and stomach issues. I was ready for anything new at this point so here we go.
Leading up to day 1 I had to prepare my house and my mind. I tried to clean out as much of the stuff I couldn’t eat as I could, but the rest of my family wasn’t doing this with me, so I was going to have to use willpower. I bought the Whole30 book and started reading. I was going to have to give up:
Luckily, the book gave me many ideas on what I could eat including recipes. I’m not really a recipe kind of gal. I like to improvise and make up my own stuff as I go. Therefore, these recipes were just a building block for my own ideas. So, I made a plan (so important) for every meal and went shopping. I told myself “You can do this” and charged through.
Plan 3 meals to take to work to eat every 3 hours. The first week I was so hungry I thought I was going to die. I had horrible headaches and I couldn’t concentrate.
Prep my food ahead of time as much as I can to save me time and ensure that I can eat only the things allowed.
Surprise! Whole food actually tastes good and makes me feel good.
These are just a few of the recipes I made up. There were more but they all usually involved these ingredients. I would also have fruit on the side like strawberries, blueberries, bananas, apples, oranges and grapes.
In the book there are testimonials about how on day 31 when you are able to start re-introducing the foods back in you won’t even want the thing you were craving on day 2. This was so NOT true for me. I craved chocolate every day. I craved bread every day. I wanted all the things my family was eating that I could not have. But, I didn’t give in. I found that since I had a deadline and if I cheated I would have to start day 1 over, it made it easier to push through.
Guess what? I started feeling better! I was less bloated, and my stomach didn’t always hurt. The best part was at the end of the 30 days I had lost 17 pounds! That was with no exercise and just changing the way I was eating. Honestly, if my whole family would get on board I could live this way all the time. You really see how awful some food can make you feel when you go through this elimination diet.
Legumes were the first food I re-introduced as was suggested. I thought for sure I would feel bloated or something the next day, but no. We were good to go to keep eating legumes- yay!
Non-gluten grains were second after two days back on the full diet. Now, this gave me some stomach issues. So, I’m bummed but thinking maybe I just ate too much in one day. I had gluten-free oatmeal and rice for lunch and spaghetti for dinner.
Diary is next after I took an extra day to recover from the non-gluten grains. Now, you need to know how much I love cheese. This was a very hard item to give up, so I was super stoked to be eating cheese on this day. My heart was broken when I ended up in the bathroom many times the next day. Cheese is out if I want to feel good.
Grains was the last to be brought back in. I was also excited about this one because I love my grains. For lunch, I had an open-faced rye sandwich with my usual toppings from above and I cannot remember what I had for dinner. However, it doesn’t matter because again I spent much time in the bathroom the next day. So now grains are out.
After it was all over, I really didn’t know what to do. My doctor didn’t really give much direction in this regard and pretty much told me to follow the book. The book makes it sound like this is the way you should live from here on out. So, for the last month, I have been doing some testing. I have been pushing my limits to see what bothers me and how much of it bothers me. I have tried cheese on several occasions and it seems possibly a small amount will be ok. I also, have added sourdough bread which seems to have no issues, but I am limiting it.
I have to say losing the weight gives me motivation to stay on this crazy diet. I have learned that planning makes all the difference. Especially, when I’m not feeling well if I already have something prepped it makes it so much easier to eat healthy while sick. I know this isn’t for everyone, but I do encourage you to give it a try. You never know what surprises are in store for you.
Next, I will doing another elimination diet and including night shades. These are tomatoes, potatoes, peppers, eggplant etc. Not eating potatoes is going to be a challenge as they have been a staple for me for months now. However, I love sweet potatoes and they are not included in the night shade family! The purpose of this is to hopefully really start focusing on my inflammation and hopefully reducing it. Stay tuned for those results.
Have you ever had a doctor not listen to your concerns about your health? Has a doctor ever dismissed your symptoms for your existing condition, only to find out later they were unrelated? Have you ever had a doctor treat you like your illness wasn’t as bad as you were claiming it to be, especially fibromyalgia? Well, if you answered yes to any of these questions you will definitely relate to this article on fibromyalgia and doctors. Here is my open letter to my ex-doctors that I want to send, but won’t.
Dear Dr. T. I am writing to let you know how my health has turned out since we last saw each other. I went through so much pain and agony emotionally and physically that wasn’t needed. Remember how you thought my restless leg syndrome was a side effect of the Cymbalta? Not to mention, the symptoms of my severe fatigue and my inability to get any sleep? Well, it turns out that I had a severe case of anemia. This could have been detected if you would have just run a couple more tests. My Ferritin level was a 4! (This basically means the iron was not binding to my blood.) To correct this issue I was given an IV solution of Iron and have been doing pretty well on that front for a few months. However, this is something that needs continuous monitoring.
Maybe you can recall, that when you wanted me to go back to work I cried? I told you how I was barely functioning and how severe the side effects of the Cymbalta were. You told me that you understood but there was nothing you could do for me. You advised me to find another doctor. I felt your actions were telling me that you didn’t believe me. You told me to stop telling myself that “I couldn’t do things” and start telling myself “, I could do things” with no care to my real medical condition that I had no control over.
I need you to know that by this point, I am almost broken not just physically but emotionally. I see a couple more doctors that treat me equally as bad. I am now afraid to see doctors, a fear I never had before. I often wonder when it gets bad if it is in my head or real. It sure feels real. I didn’t expect you to be an expert in fibromyalgia. I expected you to take my concerns seriously and maybe take some time to do some research.
Dear Dr E and Dr C. I am writing to you because you both aided in my fear of doctors. I was dismissed by both of you! Although, Dr E was thorough in the beginning by sending me to other specialists and taking multiple x-rays and MRIs. After that, you treated me like I was bothering you with my fibromyalgia symptoms. Both of you, lumped all your fibromyalgia patients into one group. You treated us all like we were the same. I’m not an expert on fibromyalgia but I do know that we each experience different severity levels of symptoms. Yes, I have found that my diet and exercise levels directly affect my fibromyalgia symptoms. However, I am still in a constant flare! Do you hear that? After a year of suffering, I am still in a non-stop flare!
I feel like I have moments where I feel like I’m coming out of it, only to be pulled back in again. What I expected from you both is understanding, not condescending behavior. I was told by you “we advise all our fibromyalgia patients to remain active and that is why we feel they can work a full-time job.”
Since going back to work, I have missed many days because of my illness and doctors appointments. My productivity has gone down because I find it very difficult to concentrate. I am often late to work because it can be a challenge to get myself ready in the morning. I just wish you both would have listened to me and had taken what I was saying seriously and helped me work towards a solution. Instead, you left me to flounder alone.
You may or may not care that I am picking myself up. After being turned away from a doctor for my case being too complicated, I have found a new primary care doctor. He seems to be someone that wants to work with me towards my health. I let him know up front how I have been traumatized. I also advocated for myself by telling him that I would listen to what he had to say but I expected him to listen to me as well. After all, I am the one living with this condition, therefore having the most experience between the two of us.
Thank you for teaching me the hard way how to advocate for myself. I hope that you can consider my story the next time you lump all fibromyalgia patients into one group.
I share this with my readers for several reasons. The biggest reason is that sadly, I know I’m not alone in this feeling and reading this may give you comfort (you are not crazy). Next, I want those that don’t have fibromyalgia to know that each one of us is different. I want you to know that we are being treated as if our illness produces the same “amount” of pain in everyone. This is NOT true! Lastly, I really needed to get this out of my head, so in part this is therapeutic for me.
Healthcare needs to change. I urge you to contact your local representatives and tell them your story. If you are able to attend Support Fibro is hosting Advocacy Day in Washington DC, September 18 & 19, 2019. Follow the attached link to get more information. Please share with us in the comments if you do either of these advocacy items.
There is hope! I know there are good doctors out there (at least I have heard the stories). I urge you to keep looking and don’t be afraid to fire the bad ones. Also, I urge you to find a health coach! A health coach can bridge that gap between the doctor and you. I recently became a certified health coach and I am excited to offer my services to my chronic illness community. My passion lies in helping others like me go from “my doctor said to improve my condition I need to change my diet and exercise, but I don’t know how” to “my health coach helped guide me to healthy changes and I’m starting to feel better.”
Since allowing myself to reach out to others almost a year ago, I have found my community. I have found my people, my tribe! I didn’t know that I needed these people in my life until they appeared. Sadly, I had closed myself off by denying my illness was a part of me. So, I write this to you today for several reasons. One is for the people who haven’t allowed others in to their hearts. The other is to recognize and thank those that are now part of my heart. If you don’t know already, here is how I found importance in the chronic illness community.
I have met so many supportive friends through the blogging world and the chronic illness community. How did I meet them? Well, one of the things that isn’t talked about much is that you HAVE to network when you start a blog. You have to follow other bloggers on social media and their blogs. This is important to not only make friends but to learn from others. There is always someone else who knows just a little more (or a lot more) than you. It benefits you to befriend bloggers for support and knowledge. I’m sorry to say, but it is rare that you are going to launch your blog and have immediate success without sharing your blog and returning the favor to other bloggers. I quite enjoy reading other bloggers articles and looking at their websites. It gives me motivation and sometimes ideas I hadn’t thought of.
If blogging isn’t something you want to do, then putting yourself out there on social media is the next best thing. Of course, you need to be careful as there are predators out there and they seem to prey on women and especially those with a chronic illness. That being said, I have met the most wonderful women on social media (some men too). These people are going through exactly what I’m going through or sadly worse. They give me strength when I don’t think I have any left. Just when I’m feeling down and sorry for myself someone will post something uplifting to remind me to keep going. I treasure the chronic illness community with all my heart (you all know who you are). Honestly, there are so many I fear accidentally leaving someone out.
When I first started blogging I saw bloggers say they were nominated for awards like the Sunshine Blogger Award, The Versatile Blogger Award. I soon learned that these awards were given by other bloggers. It is a fun way for us to get to know each other and recognize our work. I think I have been recognized for all of them now, although I haven’t written a post for each one as I have been too sick to focus on my blog.
This last month, I learned of an organization called WEGO Health. This is an organization that you can become a member and network with other people and organizations as a patient leader providing advocacy for your community. What is a Patient Leader? A patient leader is an advocate, who knows what it takes to navigate the healthcare system. It is also an influencer who is able to reach people in a community online. Lastly, a patient leader is an expert, who is a business professional who understands things from a patient perspective. Becoming a member of WEGO Health allows you to network with other industry leaders. So, if you are looking to up your advocacy game, this is the place to do it.
When I learned about WEGO Health I immediately put earning this award on my bucket list. I know that I am very new to the advocacy world, but it doesn’t mean my heart is any less involved. Since I was young, I always wanted to do something to change the world. This feeling is in my blood and drives my goals today. I started this 6 years ago when I went back to college to work on my psychology degree. At 44 years old my true desire is still to become a psychologist and study human behavior. However, my body has other plans for me. Don’t get me wrong, I am still working towards that goal, but I may have to take another detour.
I have been nominated for the Best Kept Secret and Best in Show Blog awards. I do not know who nominated me, but I suspect. However, it means the world to me and it has pushed me to keep going with my advocacy efforts. It is not easy to keep going when you fight fibromyalgia on a daily basis, work full time, and in addition work towards a degree while building a blog and business. Like I said earlier though, my community pushes me forward. They give me the energy and support I need to get back up.
I would truly appreciate support from the chronic illness community now by endorsing both my nominations at the link below. Earning this award from my community and my readers is just the incentive I need to take myself to the next level and truly make a difference in the world.
You can make a difference in the chronic illness community as well! If you haven’t subscribed to my blog yet, please do so below so you can see when there are opportunities to help your community. I also encourage all to visit International Support Fibromyalgia Network as they not only have resources but provide advocacy opportunities as well. Gentle Hugs to all my fellow Chronic Illness Warriors!
My husband and I have been coming to San Diego Comic Con for years. Sometimes he goes without me, but I believe it’s been about 15 years. He is an art collector and recently began writing comic books as well. He is well known and really this is more like a side business for him than a hobby. It seems every year I say I’m not coming back because it is so hard on my health, yet I end up going again. This is my story on Comic-Con and Fibromyalgia and how to balance both.
Comic-Con International is just what it sounds like. It is a comic book convention that is held throughout the world. The convention started 50 years ago and was more comic book centered. As Hollywood entered the scene, Comic-Con expanded to movies and television. The convention now has something for everyone and has grown to such massive popularity that it is very hard to even get a ticket sometimes. If you have ever seen the Big Bang Theory episode where they are trying to get tickets, then you know. My husband used to have several computers lined up to try to get in.
There are many things that keep me going back to Comic-Con each year. It is a lot of fun to be so close to celebrities that you admire. There are signings you can attend (if you are lucky and get into the lottery). I enjoy attending panels where you get a look at upcoming episodes and hear first-hand where the show is going. Unexpectedly, I also love talking with the comic book artists. Over the years my husband and I have had awesome experiences with artists. Although, I am not into comic books it is always nice to meet kind people.
They allow too many people to attend Comic-Con. This makes it hard to even get from one place to another. The lotteries they hold are supposed to make things more even, yet some people get nothing, and others get several things. Sadly, I think that Comic-Con has outgrown San Diego and it really needs another location that better fits its growth.
I have attended Comic-Con while having Fibromyalgia before, so I knew how hard it could be. I recommend getting parking under the convention center. This is also only on sale during a lottery. However, two years in a row we have purchased parking on EBAY. Parking under the convention center allows for easier access when you need to go and rest from all the people.
This year, I brought a walker, which was the best decision I ever made. The walker was hard to navigate in the crowds sometimes. However, it really came in handy more than it didn’t. I was able to sit down so much more often, which meant less trips back to the car. Since I had a place to sit, we were able to get into panels we might not have gotten into without the walking aid. In addition, my walker had a storage bin. This meant I didn’t have to lug around a heavy backpack.
The first thing you should do when you get there is go to disability services between A and B. Here you will get a sticker put on your badge and you can have one person as your attendant. If you have questions always ask. For some reason they don’t seem to willingly give out information, but they will if you ask a specific question. An example of this is that ADA can get into the convention center through door B2.
They put out a pdf of the program guide and exhibitors a few days before the convention. Looking through these and planning things out will really help.
Have an outline, but don’t have a set plan. I say this because you never know for sure if you will get to do something or not. So, you have to have a plan B and C and be ok with whatever happens.
If you want to get into Hall H (this is where all the really popular panels will be) then you either need to stay till 9:30pm or show up before 7:30am. This is when they hand out wristbands and also goes for ADA line.
If you need to a place to sit down or rent a mobility aid, then disability services is the place for that.
Bring your pain medications and pain creams, you will need those.
Prepare healthy snacks so you won’t be tempted to buy the junk they serve there. Although, I did splurge once on a pretzel.
If you have anxiety like I do, breathing exercises really helped me so much. Breathe in counting to 4, hold for count of 2, breathe out for a count of 6, repeat.
Again, you have to ask questions. So, always ask if there is an ADA line for something you want to do. There may be one and it won’t be advertised.
If you are flying into the convention, or don’t have room in your car there is a FedEx service on location. This is very handy because you will be buying many things. In addition, you can also check your bags for a small fee. This will allow you to enjoy yourself without having to carry all your purchases all day.
Even if you don’t have a chronic illness like Fibromyalgia, self-care is a must while attending Comic-Con. The reason I say this is because the con is 4 ½ days of early and long days. There is so much to do there from anime to video games. Not to mention, the convention has spread all throughout the area. There are things to do for miles and some things you don’t even have to have a badge for.
Proper nutrition: You are on vacation and you know your body, but I suggest staying as close to your normal diet as possible. I have IBS and it can have devastating effects on my stomach to consume things that bother me. I did this by bringing my own snacks.
Hot-Tub or bath: Using the hotel hot tub or just taking a relaxing bath can do wonders for your body. You are walking probably more than you are used to and pushing your body. So, bring your swimsuit.
Yoga: Every morning and evening I would do a few yoga poses to help loosen my muscles. I even do stretches in the shower with the hot water hitting me. Afterward, I apply CBD pain cream (linking to the cream I use). This really helps keep the pain down.
Routine: It can be a challenge to keep up your nightly or morning routine when on vacation. However, I think you will find if you keep your routine as close as possible you will find it relaxing.
These are all the tips I can give you to have a good time at Comic-Con while trying to balance a chronic illness like fibromyalgia. For me and I’m sure for many fibromyalgia warriors out there, it is hard to predict how your body is going to handle an event like this. Almost every day I woke up feeling like I wasn’t sure how I was going to make it through. With the tips above I did make it and I even had fun. I had some hard times, but overall, I managed to go with the flow a little more than I usually do, and it was fun.
Meet Hilary Neumann! She has lived with Fibromyalgia and several other diagnoses for many years. In the video below she tells her story of how she handles living with fibromyalgia. Her strength and determination to live her best life has shown me how to power through when living with a fibromyalgia diagnosis. Listen to her story below:
Hilary has lived with fibromyalgia for twenty years and has tried many different treatments. Today, she is trying “outside the box” treatments like aqua-therapy and massage. However, these treatments are not covered under her insurance. It is important that fibromyalgia patients have treatments that are accessible, not just available. This is why it is so important that we continue to let our legislators know how fibromyalgia affects us daily.
Hilary’s story is one I’m sure many of you can relate to. She lived with fibromyalgia for twenty years without an actual diagnosis. She sought out treatments. Really, trying anything she could to take control over her symptoms. All the while, living her life and raising her kids. The strength I saw in her while telling her story was very inspiring.
“I’m suffering from a silent disease. I hurt everyday. I hurt from head to toe. My brain fog, is actually my brain hurting.”
Hilary’s husband is supportive of her illness and just like us is also frustrated by it. It is so important that we have people around us for support. It makes me so happy that Hilary has someone in her corner to help her power through with her fibromyalgia diagnosis.
“I dont’ want to be treated different. I just want you to undertand. Don’t think that I’m lazy, that I can’t do it. I CAN when I feel good.”
Again, I want to thank Hilary for telling us her personal story. Also, for showing us that we can still live our best life, we just have to power through! If you would like to connect with Hilary you can do so through Facebook:
Meet Jessica Hooten, she is a fibromyalgia warrior who chooses to find the silver lining about her diagnosis. In this video she tells us all about how she was diagnosed with fibromyalgia, treatments she has tried and how she handles getting through each day. Secret: She does it by finding the humor in fibromyalgia.
Jessica, like many of us has had sleep issues. She has been to a rheumatologist and a sleep doctor to try to ease her symptoms. Finding treatment and answers can be difficult and Jessica shares her journey with us.
“You don’t want to have something….but can they just find something, so we know what to do.”
Jessica works and tells us how hard it can be sometimes. Some days she struggles to get to work. Many of us can understand this feeling. How does she get through it? She just goes, because once she gets there she knows she will be ok. She is also fortunate to have understanding co-workers.
Fibromyalgia has become so normal for Jessica that she often forgets that things that are going on with her are because of fibromyalgia. She states it takes her longer to heal from surgery than someone that doesn’t have it. She gives a lot of advice on what helps her day to day pain.
They tell me it is not progressive, that it doesn’t get worse, but I feel like it has.”
How does Jessica stay positive? One way is that her and her husband joke about it with each other. She keeps in perspective that although she may be hurting, there are people worse off than her. She gives some advice:
“You have to just accept it.
“It’s going to be ok. You are going to have another good day…when it comes you will appreciate it.”
“Knowing what makes you feel better and doing those things.”
“You have to fight it!”
She has support around her and they keep it light hearted and help her find the humor in the day to day struggles. She is thankful but also does get depressed. The challenge of keeping fibromyalgia in perspective is a day to day fight. A fight that she is willing to do with a smile on her face.
Living in constant pain can make a person lose hope. Not everyone can understand how much harder regular tasks can be when you have a chronic illness like fibromyalgia. I recently found myself in a vicious cycle of feeling sorry for myself. So, I did some reading and found some ways to find happiness and guess what? Expressing gratitude is a big way to find happiness. Of course, I have to share what I have learned with all of you, so here is how to express gratitude when you live in constantpain.
I know when I came across this information it seemed a given that feeling grateful makes you feel good. But, it is important to know why you should do it. So, here are some benefits.
To be honest, I am mostly a “glass is half empty” kind of person. Add some incurable chronic illnesses and you have the recipe for further depression and unhappiness. Truly, I know no one wants to live this way, especially me. That is why I had to find a way to see the light. Honestly, it would be so easy to let the darkness claim me; but what about my life- what about those that love me? Ultimately, this is where the search for happiness came in for me. I hope you decide to go on this journey as well.
There are so many little ways you can practice gratitude everyday of the year, not just around the holidays. If you are like me and find it hard to find the bright side, or at least it takes some effort then I recommend practice, practice, and more practice. Finally, here are some ways I find work for me:
Meditation: You can do this on your own or in a guided session. If doing on your own, focus on something or someone that you find you are grateful for. I use the Calm app and they actually have a 7-day series on learning to find gratitude.
Journal. Write 3-5 things in a journal every night before bed that you are grateful for. Then, recite them out loud or in your head. As you do this let your whole body feel the appreciation.
Write someone a gratitude letter. I love this one because it makes you both happy. Basically, you just write a letter to someone and tell them how their action made you feel.
Give a small gift. This could be as simple as bringing a treat into work for your co-workers, a small trinket for a friend or flowers from your garden. Really, it doesn’t have to cost much but the small gesture tells the person that you appreciate them.
Publicly thank someone. This is an easy one to do on social media. Share a photo of someone you are grateful for and tag them. Include a message of what they do that you are so thankful for. This is another feel good one for both involved.
Random acts of kindness. I absolutely love this one because this is also something you can do anonymously. I don’t know if you have ever experienced giving to someone without them knowing it was you- it just leaves a warm feeling all over.
Pay it forward or pay it back. An example of this is if someone in a drive through line paid for your order, then you pay for the person behind you in line. Paying it back means that you do something nice for the person who is doing something nice for you. When you have a chronic illness this goes double for your caretaker. Honestly, it can be as simple as giving them a smile or a hug and saying thank you.
Give someone your full attention. These days with so much happening at once it can be hard not to try to multi-task while someone is trying to talk to you. However, you can show them gratitude by putting everything down and just listening.
Be creative! Sit down and make a list of all the ways you can show someone your gratitude. If you have a certain talent use it! Examples of this are writing a poem, singing a song, playing an instrument or even making a special dish. Really, the possibilities are endless.
Make this a habit. Expressing your gratitude can be as simple as thinking about how grateful you are for anything and everything. Clearly, you don’t have to go to all the lengths listed above and you can certainly do more. The most important thing is to find a way to do it.
Before I became ill, I was the go to person in my household. If something needed to be done it was probably me that did it. I took care of everyone and everything, except myself. Most moms can probably relate to the thankless part of our jobs. There was hardly a thank you given to me.
After I was diagnosed with fibromyalgia, see my full story in Coming Out With A Invsible Illness, things started to change for me. It didn’t happen right away though, it took some time and me getting worse. I was in terrible daily pain, severe exhaustion even when I did nothing to warrant it and I just couldn’t function. Sadly, this included doing cooking, cleaning and taking care of my kids and husband. I just couldn’t do it anymore. Ultimately, the dynamics of the house had to change!
My kids started helping out more and my husband not only shared in more chores he was often the only one doing them. I guess since I came from the one doing everything to now not being able to hardly do anything I could appreciate the help. Eventually, I figured out that by showing my gratitude to my family, I actually felt a little better overall and happy. Even though I didn’t feel I had many reasons to be happy, I started finding the reasons!
It is important for me to keep being creative with how I show gratitude. It was stated in a gratitude meditation by Tamara Levitt from the Calm App that, “gratitude can be a superpower!” I mean all you have to do is just look at all the benefits that I listed in the beginning of this article; it truly is amazing. So how can you keep it up?
Like I said before practice, practice, and practice.
Make a ritual out of it.
Keep a journal of not only the things and people you are grateful for, but how you have shown them your gratitude.
Give yourself time to make it a habit and don’t give up.
Show yourself gratitude as well by constantly “flipping the script” on negative thoughts and reminding yourself of your positive qualities.
