My name is Suzanne, Working wife, mom and student struggling with Fibromyalgia. In my blog posts you will find comfort in that you are not alone in the challenges of marriage, raising kids, working full-time, and working towards big goals (like going back to school as an adult). I think whether you have a chronic illness or not, you will be able to relate and find encouragement in my blog posts.
I have been nominated for The Sunshine Blogger Award by
several other bloggers. Honestly, I was taking a break from blogging. I am back
in school, working full-time and still battling my illnesses. So, a break makes
sense, right? I tried to keep track of all the awards and who was nominating
me, but sadly I think I lost a couple. I do apologize to those bloggers.
These ladies are all awesome bloggers in their own right and I highly recommend that after you read this, you head over to their blogs and show them some love. I am going to take a few questions from each as each blogger has come up with 11 questions. So here we go.
I started my blog as an outlet for myself after dealing with
my chronic illness Fibromyalgia. I had been in denial for a few years and then
had become very ill. Making my illness and my journey with it public, forced me
to stay in acceptance mode. What I got back in return cannot be measured. I
have met so many chronically strong warriors who have brought so much love, joy
and friendship into my life.
If I could have any superpower, what would it be?
Remember that TV show Bewitched where the lady could do
things just by wiggling her nose? I wish I could get things done by just
wiggling my nose. Especially since sometimes I can barely function, this
superpower would make my life way easier.
Do you have any pets?
I have two small dogs and they are my love bugs. They can be
super annoying just like real children, but so worth it. My apricot poodle mix
Zoey knows just when to come cuddle and is always there for me. My white full
poodle, Wagner gives THE best hugs ever. They keep me warm and loved all the
What are you most passionate about?
I am very passionate about many topics, in fact when you get
me started it is hard to get me to stop. I am a huge advocate for the
fibromyalgia community. At first, I was just trying to raise awareness, but now
I see we need more than just awareness. We need to advocate for more education
for more research. We need to help fibromyalgia warriors learn to live their
best life despite their diagnosis.
Now this is an interesting question. I used to be an
introvert and I would say that there are times and situations that I still am.
However, now I do get energy from being with others. This is especially true if
I’m talking about something I am passionate about. However, the caveat here is
that it takes a LOT of my energy to be extroverted and I have to be very
careful or I could go into a fibromyalgia flare.
Do you want to write a book one day? What will it be?
I am currently working on writing a book. It is going to be a
self-help book that will help chronic illness fighters thrive instead of just
survive. However, since I am currently trying to finish my BA and work and keep
my blog going the book isn’t getting as much attention as I would like.
What kind of person were you in high school?
I went through many phases in high school. First, I had a time when I was a “stoner.” I wore black clothes with metal band concert t-shirts. Then towards the end of high school I was into country music and wore cowboy boots etc. What a stretch right? I think that I am now able to appreciate so many different kinds of music because of these phases.
What book are you currently reading?
Well, I am actually trying to read two books right now. As
you can imagine with so much on my plate I am not getting very far. I am
reading “Girl Wash Your Face” while I ride my exercise bike. I am also reading
my sister-in-law’s book, “Letting
go” by Charity Jackson. This is her first book and I would be so grateful
if you read it!
What advice do you have for other bloggers?
My biggest advice is to know what your goals are. If you
want this to be your full-time gig making you money, you need to treat it like
that. Plan posts out, but don’t try to be perfect. You can get all the advice
in the world, but so much is best learned as you go. In general, the blogging
community is very supportive so seek out someone in your niche and soak up all
the knowledge you can.
What is something interesting on your bucket list?
I don’t know if it is interesting or not, but I would like
to travel. I have always wanted to visit Italy, Rome, Ireland. I hope that one
day I get to do those things.
What is your favorite dessert?
I love everything chocolate! It really doesn’t matter in
what form this chocolate comes in, I will eat it.
Rules for the Sunshine Blogger Award
Thank the person who nominated you and provide a
link back to their blog.
List the Sunshine Blogger Award rules and display
the logo on your site.
Answer the Sunshine Blogger Award questions.
Nominate 11 other bloggers and ask them 11 new
Notify the nominees about their nominations by
commenting on one of their blog posts.
If you have already been given this award in the past, no need to respond. In fact, there is no pressure to respond at all. This is just a fun way to network and I personally think it is a high honor because other bloggers decide who to pass it on to next.
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.
**This post contains affiliate links, if you click on the links and make a purchase FibroMomBlog will earn a small commission. Please be aware that I am not a medical professional and you should always consult a physician before making any dietary changes. See my disclosure policy for more info.**
Reasons I started the Whole30
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 (see Trauma and Fibromyalgia) 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.
This first week taught me some lessons that actually helped
me finish strong.
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.
What did I eat on the Whole30 diet?
Once I found foods I know I liked, I did kind of stay with them as a staple. I posted many pictures of my meals on Instagram as I went along. Follow me to see them: https://instagram.com/fibromomblogh
2 scrambled eggs mixed in with:
Sweet potatoes or red potatoes
Zucchini and or
bell peppers (which actually hurt my stomach, so
I stopped those)
Turkey roll ups:
Organic turkey lunch meat
Lunch-able Whole30 Style:
Organic turkey lunch meat
Side of baby carrots
Veggie Baked Potato:
Veggies like zucchini, summer squash, asparagus
Sometimes scrambled egg
Chicken or Steak
Mustard (because I love it on everything)
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.
The surprises I didn’t expect from the Whole30 diet.
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.
How I re-introduced the forbidden food and what happened.
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
My Compromises with the Whole30 diet
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.
To learn more about the Whole30 program here is the link to their website.
What is Next?
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.
Do you have a chronic illness physical or mental? Are you looking for a place to belong, share your story, make friends, get daily tips and advice from others going through the same fight you are? Join my Facebook support group The Chronically Strong Warriors.
I have the high honor of being nominated for The Disability Blogger Award by Georgina from Chronillicles. This award is to give a deserving nod to those bloggers that blog about their chronic illness, mental illness or special needs. I agree with Georgina that these bloggers don’t get enough recognition as they are fighting a whole separate battle while finding time to write about it. These blogs help so many people and often are a source of community and support for those that may not have received either without them.
Questions from Georgina
Why did you decide to start blogging and why did you decide
on your niche?
Blogging is something I had been considering. I even started a free wordpress blog, but then never used it. I came across an ad for a free webinar on starting your own blog. Of course, the free webinar was super basic so I ended up paying for the course that walked you through actually setting up your blog. This is how it began for me.
I had been very ill for about 6 months and I was trying to
come to terms with what was happening to my body and my mind and all the
emotions that came with that. I’ve always enjoyed writing and I thought this
would be a good outlet for me while also possibly helping others. Helping other
people makes me feel good and when you are always feeling horrible finding what
makes you feel good and doing it, is important!
What are your top 5 tips on coping with your illness/disability?
To be honest, I am still learning every day on this one. The
number one thing that has been getting me through is the love and support of my
husband. Since not everyone has that I will do my best to give the top 5 things
that have helped me in no particular order.
Meditation and deep breathing exercises. When you have chronic pain sometimes you feel like you just can’t take another second. I have even thought about how death might be better than this. However, that is when I would really be mindful and clear my mind. The deep breathing has been a life safer on days at work when the pain gets bad.
CBD oil has also been something I have been using to cope. It has helped increase my energy and has an effect on my pain as well.
Exercise just recently has become something I have been able to incorporate into my daily life. It really has increased my energy and just makes me feel good overall! I haven’t noticed any change in the pain though, in fact it sometimes feels worse but you can’t have everything I guess.
Learning how and when to spend my “spoons” has been an important coping skill that I am still working on. I am learning how many spoons each activity will cost me and be able to judge what activities are most important to me. This is so important because it allows me to still be able to live my life in some capacity.
Find support either from family or friends. In addition, it helps so much to reach out to others also going through the same hardships. I can’t tell you how many friends I have made and we don’t all have the same illness but we can find comfort in each other.
Where would your dream holiday be and why?
I have been a parent my whole adult life, seriously. Most of
my vacations have been to places that the whole family would like to go. So, if
I could go anywhere it would be somewhere tropical, remote but no too remote. I
don’t want too much agenda, just relaxation and being able to do what I want
when I want. A beach is preferable as I love to hear the sound of the waves.
Are you an early bird or night owl?
So this is a tricky question. With Fibromyalgia I can’t always
sleep and then I’m a night owl but not because I want to be. For a few months I
had a severe case of restless leg syndrome which made sleep almost impossible.
On the flip side, I hate getting up early but I love being up early. Confused?
Yeah that is my life, confusing. I enjoy being up early before the sun comes
up, having a cup of coffee and writing or reading by myself.
What is your go-to comfort food?
The first food that comes to mind when I think of comfort
food is mashed potatoes. I love them so much, I’m pretty sure they contributed
to me getting fat. The other comfort food is for sure chocolate, it fills my
soul with joy.
What is your favorite movie or TV series?
I don’t know that I have a favorite because there are too
many to choose. Currently, my must see TV shows are Seal Team, SWAT, Walking
Dead, Big Bang Theory and Blue Bloods.
Which is your favorite social media site/app and why?
This is a tough one to choose because I get something from each.
Pinterest is all about driving traffic to my blog. Instagram is where I bond with my fellow spoonies.
Facebook has recently been good to me because I started a Facebook support group The Chronically Strong Warriors and in doing so have grown my own FB page and found many new friends.
Twitter is the one place where I can do it all. I bond with fellow bloggers, chronic illness warriors, moms and dads and just regular people. I can post pictures, videos or just text. Twitter makes it easy to share others posts and grow quickly; it is just a one stop shop for all and I love it.
Now for my nominees for the disability blogger award
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.
This post contains affiliate links. If you click on any of the links and make a purchase FibroMomBlog will make a small commission. In addition, this post a recount of my personal experience. It is not intended as medical advice.
What is a pituitary adenoma anyway?
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.
Tests and More Tests
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!
Treating What Can Be Treated
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.
The Waiting Game
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.
How Does it feel emotionally?
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.
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!
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.
This post contains affiliate links. If you click on them and make a purchase I will receive a small commission.
Vicki’s Road to fibromyalgia diagnosis
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.
Mental Health diagnosis
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.
Trying to Work While Ill
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.
Why medication alone doesn’t work
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.
Immune System Failing
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.
How Fibromyalgia changed my life.
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.
Loss of friendships due to my illness
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).
My Mental Health
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).
Side-effects of medication
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.
Finding the right medication combination
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
Find doctors who COMMUNICATE with each other to treat
the WHOLE person!!
Dealing with pre-existing mental illness
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
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.
Benefits of therapy
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.
History with therapy
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.
My experience with CBT therapy
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.
Benefits of CBT
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..
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.
This post contains affiliate links, if you click on the link and make a purchase I will receive a small commission.
How old were you when diagnosed with Fibromyalgia?
When I was 29 years old, second semester in graduate school at the University of Michigan.
When were you diagnosed with Endometriosis?
A couple years later – August, 2015 (I suspected I had it for more than 10 years prior to my diagnostic surgery though)
Which diagnosis came first?
Fibromyalgia – mostly because Endo requires surgery to diagnose
Do you have any other diagnosis or conditions? If so, what
are they and were they diagnosed before or after the Fibro and Endo?
I was also diagnosed with Systemic Lupus Erythmatosis,
Rheumatoid Arthritis, Hypothyroidism all from 2013- 2015
What are some of the symptoms that you experience?
Chronic Widespread Pain
Do these symptoms affect your daily life? Have you had to change the way you live? If
so, please explain.
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.
If not already stated above, was diagnosis a long road for
you? Please tell us a little about the
struggle to figure out “what was wrong”.
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.
What are some of the ways you deal with your endometriosis and fibromyalgia symptoms that have helped you get through them?
Pain Management Techniques
Focusing on Radical Self Care
Frequent Rest Breaks
Are you on medications or have you tried medication for any
of your conditions? If you would like tell us about what you have been
through. What has helped and what
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.
As a result of my endometriosis I also have anemia. My iron has a hard time binding to my blood
cells. Do you also have this, or is there anything else you experience directly
related to Endo?
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.
How old were you when you started having pelvic pain? Have your periods always been unusual or painful? Did you have fertility problems?
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.
Do you have any tips or advice to give to others in either getting diagnosed, treated or living with Fibromyalgia and Endometriosis symptoms?
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.
Have you heard about CBD? Most likely you have, as it is growing by leaps and bounds now that the hemp plant is legal to grow in the US. So, even if you have heard of CBD, do you really understand what it is and what it does? Well, this article is going to educate you. Even if you think you know everything, stick around, you might learn something new.
*Full disclosure: I am a CTFO associate. If you click on any CTFO links and make a purchase I will receive a commission. There is no obligation to do so. I am not a medical professional and am not offering you medical advice. This article is for informational and educational purposes only. Please consult your physician before taking any products.*
What is CBD?
CBD is also called cannabidiol. If you know anything about science, then you know that plants are separated in categories like “families.” Dr. Robban Sica explains to CTFO associates that cannabis is the genus and the hemp and marijuana plant are both a class under the same genus. The hemp plant makes over 80 cannabinoids, with CBD and THC being two of them. Think of it this way, the primary cannabidiol of the hemp plant is CBD and the primary cannabidiol of marijuana is THC. You can find both in each plant but, THC (tetrahydrocannabinol) is the component that gives you a “high” which is found in great abundance in the marijuana plant.
Why is CBD important?
Our body has an endocannabinoid system! What is this you ask? In really simple terms, this is a bunch of receptors throughout our body that “talk” to each other. Their purpose is to keep every-thing in balance within our body. But wait, it is isn’t just humans that have this, any mammal with a vertebrate has this system in their body. This is where CBD comes in. If your body is lacking in its naturally made cannabinoids, consuming more from CBD can help your endocannabinoid system function more efficiently. This explanation is very simplistic of a very complex system, so to learn more about the science you can visit Fundación CANNA or Science Direct.
What is the history of the hemp plant?
Hemp has been utilized on earth for about 6000 years. It has only been in the last century that it was used as a political tool and deemed illegal. The fibers derived from hemp have been used for clothing, paper and medicine. In fact, hemp cloth was found at an archeological site of the Mesopotamia dated back to 8000 BC. Not to mention our own US Constitution was written on hemp paper! So, what happened you might ask? Cotton happened and the invention of the cotton gin. See, hemp was not easy to process and was highly labor intensive. Not to mention, in the late 1930’s the powerful textile companies didn’t like that hemp was there to compete with so they aided in new legislature that would eventually make growing hemp illegal. To learn more details like this visit MIT.edu where I gathered some of this information.
Benefits of CBD
Why would you want to take CBD? Let’s go back to that CTFO
training call where Dr. Sica explains just a few benefits. She states that CBD
Our immune system
Balance blood pressure
She also states that CBD is an adaptogen, which means if something is too high or too low CBD helps balance. This makes sense with what we just learned about the endocannabinoid system, right! If your body’s endocannabinoid system isn’t working properly, CBD could help its balance.
Dr. Sica also explains that the natural components of CBD can cause what they call “entourage effect” which means it increases the good outcome and decreases side effects. So, this all sounds good right? Then why is my friend seeing faster results than I am? Dr. Sica explains that there could be a couple things going on here. First, you could have toxins in your body that are preventing or blocking the receptors from working properly. Also, you can’t control where the body is taking the CBD first. You may think your back pain is your priority, but your body may think your high cholesterol is the priority. Bottom line, you cannot control where the CBD goes in your body and how long it will take to “work.”
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Where I get my CBD
So now that you know what CBD is, why it is important, the benefits and history, you may want to know where you can get it. There are many companies selling CBD, so you really need to do your research. You want to find a company that uses the highest-grade hemp, no GMO’s or pesticides and isolates the CBD through CO2 extraction and crystal precipitation. Most importantly, you want a company that is going to show you exactly what is in their product with 3rd party lab results!
To view some quality products now follow this link to CTFO
To view a webinar on the opportunity to have your own CBD business click webinar.
I hope that you have found this article informative. If you want to know more about CBD, please let me know in the comments. More articles to come on finding the right company for you, differences in isolate versus full spectrum and my story, so subscribe today so you don’t miss out on those posts.
If you are interested in becoming a CTFO associate please click this link.
Staying positive through chronic pain is a topic that I’m all too familiar with. At the end of 2015, I was diagnosed with Irritable Bowel Syndrome (IBS). I had no idea how to handle my physical or mental health at the time, and I quickly fell into depression.
*This post contains affiliate links. If you click on the links and make a purchase I will earn a commission. There is no obligation to do so.*
There were many days where I would wake up and just lay in bed for hours, not wanting to do anything because I felt so sick. Unfortunately, my depression was only fueling my IBS. I was stuck in a cycle of being depressed because I was sick and then becoming sicker because I was depressed. The two kept feeding into each other while I struggled to find ways to get back to the quality of life I had before IBS.
The cycle went on for a few months before I realized I had to make changes to save myself. This may sound cliché, but one morning I woke up and simply realized that there is no magic medication, no amount of medical tests I can take… Nothing was going to help me until I helped myself.
If you’re in a similar spot, I highly encourage you to seek out help if you don’t know where to start. Just because you feel alone, doesn’t mean you have to be alone. I certainly didn’t walk my path to recovery alone and neither should you. If you’re feeling stuck or lost remember there are people out there who can help you out.
The road to recovery will be different for everyone and often, it won’t be an easy one. But don’t let that discourage you. It’s a path worth walking, and it all starts with your first step.
Here are a few steps you can take to stay positive in the midst of pain.
1. Set goals for yourself
For me, my first step to recovery was setting goals for myself. My first goal when I was recovering was to get out of bed every morning and then make my bed. Within a week, I had added a second goal: getting dressed. A few days later, I was going outside for short walks. Eventually, I built up the nerve to go grocery shopping. And while the first few times were rough because of my social anxiety causing my IBS to flare up, I was able to build up confidence. To this day, I still use goals to help me manage my life. Goal setting is a great tool for helping you through those tough days.
2. Manage your stress
Like most other functional diseases and chronic illnesses, IBS is linked to stress levels. Managing my stress was a huge hurdle that I had to tackle. By that point, my stress levels were rampant because of insomnia. Since a lack of sleep can lead to irritability, anxiety, and depression, the first move in taking on my stress was fixing my sleep schedule.
Through goal setting and meditation, I was able to get myself into a healthier sleep cycle. Once I was sleeping better, I began relaxing while I was awake. To do this, I began practicing deep breathing exercises.
Breathing is a basic function that we often don’t think about. But did you know it can relieve tension? I practiced several techniques until I settled on one that was the most helpful for me. I took a few minutes out of my day to take deep breaths and look for things to be thankful for. This would help me be more mindful while also distracting me from focusing on the negatives.
I encourage you to find what works best for you. There are numerous techniques from deep breathing alone, to yoga or meditation. Remember there isn’t a right or wrong answer here. The goal of stress management is to be using what’s best for you.
3. Get help
It’s never been easier to find people to talk to thanks to the internet. However, despite that fact, we often feel isolated in times of crisis. I know I did when I was diagnosed with IBS. I felt cut off from who I was and the people I cared about. Eventually, I joined an online support group and soon afterward, I became more comfortable with myself.
Online groups are a great way to share with others anonymously. I found it particularly easy to talk about private feelings with strangers, knowing that they had been there too. And while I remained anonymous during that time, I coined an enduring term for those few people whole shared their stories with a stranger. We were “bowel buddies.” They helped me find the strength to be comfortable with myself. Because of the help I received from my support group, I was finally able to talk to my friends and family about what I was going through.
Online groups are a great way to share your experiences and learn from others in a similar position. It may take a little research to find the right one for you, but it’s worth it.
4. Embrace encouragement
Once I became more open to people around me about how I was feeling mentally and physically, I was bombarded with support. I say bombarded because that’s how it felt. Honestly, I was overwhelmed and quickly became unreceptive to a lot of the advice I received. It was too much to take in. I felt myself feeling isolated again in the midst of it all.
I had to learn to let other people help me. This was no small task with my pride in the way. It took some time, but eventually, I finally started taking some advice. However, I only listened to the advice that I felt would truly help me.
Advice isn’t one-size-fits-all. It’s important to have boundaries set up so you’re not pushed too far into something that may hurt you more than help you.
5. Stay in touch with your feelings
One of the suggestions I did take to was keeping a journal. At first, I only intended to keep a food journal to try to map out what foods cause my IBS to flare up. I would write the date, how I felt, any goals I set, and what food I ate. As time went on, I started to write more about my thoughts and feelings. I recently went back to re-read the journal, and the effect on me was profound. It gave me a sense of closure, inspiration, and the strength to push on. In fact, it was one of the key motivators that inspired me to co-found Jumpstart Positivity.
There’s strength and inspiration in your own words too. The best way to keep track of them is writing them down. Keep notes in your phones, write in a journal, or maintain a gratitude list. Do what works best for you as long as you’re checking in with yourself on a regular basis.
6. Visualize positive outcomes
Having the constant fear of an IBS flare up made many outings a living nightmare. Desperate to avoid becoming a hermit, I sought out ways to counter my thoughts. What I found the most helpful were mantras and visualizations. I would visualize a situation, for example, being stuck in traffic. I would remind myself with a mantra that it’s out of my control and that’s okay. Then, later that day when I inevitably would be stuck in traffic, I would simply repeat my mantra to keep myself calm, thus avoiding a possible flare-up.
Mantras are a very easy-to-use tool. They can be used anytime anywhere for anything. To learn more, check out how you can feed your mind with mantras.
7. Stay active and involved
Mantras really helped me become more active, which I feel improved my health the most than the conventional medical methods I was trying. I still practice my mantras when I need them, but because of the other steps I have taken, I feel that I am a much stronger person than I was before.
Staying active is a big part of staying healthy, but it’s not just physical health. Staying active helps your mental health as well. I often go out for walks to clear my head and collect my thoughts. In fact, I attribute walking to my recovery from my IBS cycle. It wasn’t an easy path to take. I knew I’d still have IBS no matter what and that I’d still hurt, however, I didn’t want to give up.
People always say life is a race but I like to think it’s every day that’s the race. It doesn’t matter if you win or lose, run or walk, trip and fall. What matters is that you’re back at that starting line every morning ready to go again.
Pain is… well, painful. Nobody likes to be in pain. But if you’re experiencing pain, whether it’s IBS, fibromyalgia, or some other condition with chronic pain, there’s still hope. There are lots of ways you can continue to stay positive in the midst of pain. You can set goals for yourself, manage your stress, get help from others, seek positive input, stay in touch with your feelings, visualize positive outcomes, and stay active. Find what works best for you, and keep moving forward. Progress is progress, no matter how slow you go.
Kendall Slack is the co-founder and CEO of Jumpstart Positivity, an online community committed to personal growth, positive thinking, and impactful change. He’s an adventurer, storyteller, and entrepreneur who’s passionate about helping others pursue peace, purpose, and positivity. After being diagnosed with IBS in 2015, Kendall began a journey of self-reliance and recovery. Ever since then, he has been striving to share his lessons on how to appreciate the struggles in life.
If you enjoyed this guest post, please let Jumpstart Positivity know in the comments below. Also, visit another guest post on the benefits of emotional therapy.
Have you ever been so far lost in the darkness of depression that you wonder if you will ever be able to get out? Well, that has been me for a while now. I’m not sure I am totally out yet, but I know I am currently clawing out from the darkness. So, it is time for some self-reflecting with A Chronic Voice’s monthly prompts.
In the last 6 months, I have started working full-time again after a 5-month medical leave due to a severe Fibromyalgia flare (among other illnesses). I started a blog, and a CBD business. Lastly, after a semester off, I started back to Penn State World Campus to finish my BA degree in psychology. That isn’t too much is it? (she says sarcastically)
This post contains affiliate links. If you click on the links and make a purchase, I will receive a small commission. There is no obligation to do so.
The Beginning of the Darkness
Needless to say, I have had some adjusting to do. I have been trying to adjust to working full-time
and not having much luck with that. However, I am assured by ALL medical
professionals that I can and should be working – so there is that. I am
adjusting to going back to school by getting a C and D on my first tests. This
doesn’t sound like adjusting to me, especially since I am an A student.
Honestly though, it is my way of adjusting. You can’t adjust to something you are
not willing to try, right? So really, I see this appearance of lack of
adjusting as “adjusting.”
This leads me to the fact that I am hoping I can adjust to all these obstacles I have in front of me. Will I ever be me again? Or, should I give that up and figure out who the hell I am now, who I am going to be? Really friends, I am hoping that I can pull this off. For the last seven years, I have been dreaming of becoming a therapist. Not just dreaming but working towards making it happen. I am hoping that I can juggle all these activities I have committed to with zest! I know that doing so involves me clawing out from the darkness of depression.
Seeing the Light in the Darkness
At this point, you are probably saying to yourself or to the screen, “Why are you doing this to yourself?” Well, that is a good question! I am stubborn, determined, and push myself to perfection- that is why. I know I need to change this, but easier said than done my friend. So, I am going to work on surviving. No! I am going to survive! Surviving is actually a very important word for me this month. My depression has been real, overwhelming, scary and out of my control. Which has made me question my ability to survive. Honestly, my goal is to start thriving, not just surviving!
Thank goodness for social media! How often do you hear people
say that? Let me explain. My depression coupled with my chronic pain, etc.
makes interacting with me on a daily basis difficult to say the least. So, befriending strangers on social media
has saved me. These people have saved me more times than they know. They do
this with shout-outs, sharing my posts and reminding me of my good qualities. I
am sure they don’t even realize how I couldn’t see these things in myself and I
needed them to remind me. I am so grateful for my social media family, truly.
Getting Out of the Darkness of Depression
This last month has been like an awakening for me. I have faced my demons, and the darkness inside
that I forgot was there. Yes, the darkness awakened, but so did the light. I used
so much energy, but every single day I pulled myself from the darkness with
positivity. Believe me, I was literally clawing out of the darkness, pulling
myself into the light. Every. Single. Day. So, as you can imagine, I am exhausted.
If you or a loved one is suffering from depression, please know that you are not alone and there are resources, such as the Suicide Hotline 800-273-8255. If you need help figuring out how to help a loved one with depression click the link to my post.
Lastly, I want to thank Sheryl from A Chronic Voice for inspiring this post and providing the prompts: adjusting, hoping, surviving, befriending and awakening. If you have a chronic illness and would like to participate in this link up party, it isn’t too late. Please find the rules and guidelines at February Link Up Party.
I had the great pleasure of meeting Amanda from Imagine Life Therapy on Instagram. As you all know, my subject matter has been focusing on mental health and how it affects our chronic illness. You can go back and read the start of the series called Fibromyalgia & Mental Health. So, I was wondering how emotional therapy could benefit fibromyalgia, if at all. I am so excited to share this interview with you. I hope that it helps you as much as it helped me.
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yourself and tell us a little bit about your therapy practice.
I graduated from Central Michigan
University with a Bachelor of Science in Psychology in 2009. I went on to
graduate from the University of Michigan in 2013 with a Master of Social Work
degree. I became a School Social Worker for 3 years working mainly with
students with emotional and behavioral disabilities. Throughout this
process, I became diagnosed with several autoimmune diseases. This not only
changed my life, it changed my perspective. I learned first hand that
there are few supports to help emotionally cope with this major life change.
After 3 years of struggling I took my wellness into my own hands through
research and finding ways to not only manage my disease outside of the doctor’s
office, but to ultimately create a life for myself I could still be happy and
fulfilled by. Having been successful in doing this and reflecting on my
purpose, I made it my mission to help others experiencing the same
In my Practice I provide a
validating space for people with chronic illness to make sense of their
experience. I help them work toward
effective disease management, process the difficult emotions that come up and
learn skills and tools to help them be successful living life with chronic
How long have you been treating patients with chronic illness and/or fibromyalgia? Also, How did you get started?
I started my practice in 2017 – The idea came from my own
personal struggle finding a therapist’s support when I was trying to navigate
my first job after my diagnoses. I couldn’t find a therapist who I felt really
understood what I was going through or that could offer me tangible skills or
tools for managing my illness and figuring out how to integrate it into my
What kind of therapy
do you provide for chronic illness?
I work with a variety of modalities depending on what I feel
would be most helpful for the client. I
strongly believe in Cognitive Behavior Therapy, as it heavily supported by
research to be helpful for managing chronic illness and chronic pain. I also
incorporate Mindfulness, Ecotherapy, encourage creative expression, Exposure
Therapy where necessary (a type of CBT), Solutions Focused Therapy and
Narrative Therapy techniques.
We essentially create a plan of action to address the
concerns that the client views as most distressing and work from there. Some
major areas of interest are typically stress management, grief/loss specific to
chronic pain/ illness, communication, problem solving, relationships and
symptom management or overall disease management.
In what way(s) can
therapy help a person fighting fibromyalgia?
Therapy can help through creating a plan unique to the
person’s concerns (because these look different for everyone) as well as just having
a supportive space to talk about and process everything that has happened, is
happening and will happen. They can build skills for symptom management, get
resources and problem solve with a professional as things come up for them in
real time. Therapists can also help with pain management, relationship
difficulties that arise inevitably from the added stress and lifestyle changes
required after diagnosis and put together a stress management plan to help
reduce added distress. Seeing a therapist does NOT mean or support the belief
that fibromyalgia is ‘all in your head’, in fact, it can be empowering and help
you regain control over something that feels so uncontrollable at times.
In my area finding a therapist that takes new patients and my insurance is nearly impossible. In addition, finding one that also has experience helping people with a chronic illness like fibromyalgia is even more of a challenge. Therefore, can you recommend techniques that a person can use on their own?
This is a challenge regardless of specialty, mainly because
therapy is undervalued and therapists are underpaid by insurance companies.
This is a whole other issue, but it trickles down to the client. There ARE more
and more therapists specializing in this area though, and I think the need is
becoming more and more visible. Most
therapists I know who specialize in this area, do so because they have a
chronic illness themselves. We are very
good at referring to each other around the country where we can because we
understand the need for clients to feel supported by someone who understands
this unique struggle.
I recommend searching on PsychologyToday in your area and looking under the therapists specialty areas to make sure they specialize in chronic illness. In regards to insurance, there is a great resource called Open Path Collective that is a national lifetime sliding scale program where you can find a therapist for the rate of 30-60$. You pay a one-time fee and belong to it for LIFE so if you ever move and have to switch therapists, you can jump right back on there and find someone who will honor the same fee.
For those looking to
find a therapist, what questions do you recommend asking to find the “right
First, ask your self, ‘What do I want the focus of therapy
to be for me?’ Usually therapists offer a free 15 minute consultation via phone
or video, which is a great way to get to know if they are a good fit. During the consultation they may ask you what
your top 3 concerns are, and these can become your goals to work on in therapy.
You can also ask if they have previous experience supporting
clients living with a chronic illness, and what their approach for this
population of clients typically is (if that is what you want the focus of your
therapeutic work to be on).
Also be aware that for us, it is unethical to ask for or
elicit testimonials or reviews from past clients, so if a therapist doesn’t
have a lot of ‘reviews’ online, this is why.
It is not necessarily a reflection of their ability or work.
Many people are
fighting a physical chronic illness and a mental illness. First, do you find
that to be true among your clients? Finally, do you think there is a connection
between the two?
Absolutely. One of the things I educate my clients about is
the fact that Depression is the number 1 co diagnosed condition with ANY
chronic illness. I also let them know
that both anxiety and depression can be a part of their symptom cycle and a
result of the circumstance of living with a chronic illness. I also see a LOT of trauma related to medical
experiences and stigma, which can result in PTSD or anxiety relating to medical
situations or events and navigating society with a visible or invisible
disability. This area doesn’t get a lot of mainstream attention, but it’s more
common than you’d think in the chronic illness community.
Please feel free to
add anything else here that wasn’t asked. We would love to hear more about your
practice and the services you offer.
I speak at local support groups for all sorts of chronic
illness populations and am always happy to speak or present if I’m available.
I’m located in the state of Florida and offer telehealth or virtual sessions,
which is a great convenience for people whose conditions fluctuate unexpectedly.
I also have an in person office in St.
Petersburg, FL and am currently working on an online school filled with courses
and tools for people with chronic illness to access anywhere, anytime. I take
medicare and private pay and offer superbills for people who have access to out
of network reimbursement with their insurance. I also am an Open Path provider
and offer sliding scale to a limited number of clients as available.
Lastly, please tell my readers how they can find you.