Abdominal Update: "Second" Opinion

I want to provide an update on the status of my abdominal pain, because I feel I glossed over that update a bit in my Mayo Clinic post. I saw a new gynecologist at the recommendation of my pain management doctor. I explained in this post that my pain was not due to scar tissue on my abdominal wall, as he had previously thought. His advice at my follow-up appointment was to go seek another opinion from a gynecologist. As I said at length in my previous post, I was disappointed to start back at square one, but excited at the fresh perspective this new doctor might bring. Although, I should point out that while I am calling this a second opinion, I have actually seen 3 other gynecologists within two practices for this issue. However, their diagnoses/treatment plans were SO wrong, that I choose not to include them when discussing my progress.

Finding a New Gynecologist

My mother (angel that she is) made an appointment at a local gynecologist that had experience in laparoscopic and robotic surgery, and seemed well regarded by her previous patients. I would like to point out at this point that we had already been the surgery route. I have had a large number of surgical procedures for a woman my age, and while we are not against surgery, we don't want to keep opening me up without a game-plan. We hoped that this new doctor, let's call her Dr. R, would provide us with potential non-invasive options, as well as explore diagnoses we had not yet considered.

A Possible Diagnosis

After taking a thorough history, and taking into consideration the diagnoses and procedures I had already explored, she had a potential diagnosis. Dr. R believed I was exhibiting some symptoms of Interstitial Cystitis. This condition is also known as painful bladder syndrome. The obvious symptom I was displaying, was mild-severe pelvic pain. I will say, however, that I do not feel like my pain necessarily revolves around the bladder or urination. Just the same way that I don't feel that my pain increases or decreases based on what I eat, or how much I eat. As always though, symptoms are different for everyone.

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Treating I.C.

The best part was that the treatment is non-invasive. Physical therapy for your abdomen and pelvic floor (sounds interesting), and a medication with minimal side effects. I tried the medication for about a week- it is supposed to be fast acting- and experienced no changes in my pain. I have an appointment booked for physical therapy, but as with everything in the medical world, there's a waiting list. I'm not too optimistic about the physical therapy since the medication didn't work, but I will give it my best and try to go into it with an open mind.

I can't imagine I will have too many more updates on my abdominal pain before I go to the Mayo Clinic, but I will of course have plenty of other things to write about!

Coping with Chronic Pain

I believe strongly in the importance of treating pain as total pain. I have learned in therapy that this means treating the four individual aspects of pain to reduce your total pain, or your experience of this pain. The four aspects are the physical (probably the most obvious), the mental, the spiritual, and the behavioral. I hope that by sharing some of my coping strategies, I can help you reduce your total pain, or give you some inspiration for treating total pain.

PHYSICAL: 

Now I will admit, I am much better at treating the physical part of my pain, so this section will likely be the longest. Some days I only use one of these, and some days I do them all!

Exercise:

• Going on walks- start off with just a mile or a half mile, and build your way up!
• Yoga- Yoga with Adriene on youtube is amazing! I recommend her 31 Days of Yoga series for beginners 

Relaxation: 

• Breathe deeply- there's a reason they teach this to pregnant women!
• Get a massage- most places offer a massage at introductory pricing for 
• Neck rolls, gentle stretching 
• Heat/cold- ice packs, Hot Water Bottle, or heating pads

Self-Care: 

• Take a long, hot bath with your favorite beauty products
• Do a face mask- one of my faves is this one below, I love doing them in the evenings after a bath to help them really sink in!
Freeman Dead Sea Minerals Facial Anti-Stress Mask, 6 Ounce

MENTAL:

The mental side of things is all about rewarding your thinking mind, and in all honesty is one that I personally struggle with. These suggestions below are definitely a great start.

Social:

• Ask for help- often times people who aren't sick don't realize that the smallest tasks can seem so huge when you don't feel well. My mom is always asking if there is something she can do. Ask for help making your dinner, or getting a load of groceries- most people would love the opportunity to help you!
• Call a friend- pain can be so isolating- call a friend while you clean, or even just sitting in bed
• Do one social task a week- (a goal for me!)

Positivity:

Try and mention non-medical things in your conversation. Talk about hobbies, goals, ambitions, or even something positive you did that day! Focus on the good

• Keep a gratitude journal. I love The Five Minute Journal: A Happier You in 5 Minutes a Day, it's so easy to work into your morning or night-time routine because it's quick! 

• Think positive thoughts!- Some examples are "I am strong. I am resilient. I am worthy." It seems silly, but if you say them enough times, you'll start to believe them!
• Adjust your expectations- I cannot do anywhere near as much in a day as I could before my pain turned chronic. But instead of focusing on this, I recognize my effort and the tasks I DO accomplish. Don't compare your days to someone else- we all walk our own path

SPIRITUAL:

For some people spirituality means religion, however, for others this can simply mean connecting with something bigger than yourself- like nature, or building a community of your own. 

Resources: 

• Hypnotherapy- I currently have a hypnotherapist and we use lots of visualization techiques while in trance. Let me know if you want a detailed post about my experience with hypnotherapy! 
• Meditation- Lots of free apps can help by offering guided meditations. I have Breethe and Headspace
• This book, Meditations for Pain Recovery, has an incredible way of talking about exactly what I need on any given day. It is described as a book of helpful lessons learned during the author, Tony Greco's, recovery. This book has a holistic focus and really looks at the whole picture. Each day of the year has an inspirational quote that Greco expands upon in a beautiful and natural way. 

Slow Down:

• Stop and smell the roses! Again, it sounds corny, but slow down in your daily activities and take stock of the things that are so amazing about this world
• Love others- This one is so important. You never know what the next day brings, so truly appreciate the special ones in your life- and tell and show them how much they mean to you
• Remember that healing happens, and have patience

Community:

• If religion is your thing, I suggest going to church or joining a bible study group
• For exercise, I have participated a running club before and really enjoyed that. Especially on vacation, running tours are a great way to view the city!
• Chronic Pain Anonymous is a great resource and community for those that just want someone who gets it

BEHAVIORAL:

Behavioral healing techniques are another category I like to think that I utilize effectively. Behavioral techniques focus on the little things we can do that naturally uplift our spirits.

Creativity:

• Sing, or play an instrument- Fun fact, I play guitar! Music is proven to be therapeutic, and I know I feel better after belting out show tunes in the car on the way home from the doctor!
• Read- transporting yourself into another world is fantastic for taking your mind off of emotional pain, especially. My favorite fiction author is Kurt Vonnegut. His short stories are futuristic and thought-provoking. 
• Do something artistic- now this can be drawing, taking photos, or anything that gets those creative juices flowing. I am currently working on a going away scrapbook for someone special in my life, and I do not exactly consider myself the most talented artist. It's the thought that counts, right?

De-Clutter

• Now you can definitely take this literally and clean off your countertops of unwanted junk, or cleaning out your closet and making a donation our of gently used items.
• However, there is also the non-literal route to de-cluttering our lives. For instance, screening calls when you just don't want to talk, or keeping noise down, or single-tasking, instead of trying to do a million things at once. These things help to declutter the mind, and help you focus on what is truly important. 

Pets

• I have a four year old black cat- who is the light of my life. Playing or cuddling with him on the dark days is something I wouldn't trade for the world. Especially when living alone, a pet makes you feel less isolated. Clearly he'd had a busy day in the picture below (lol)
  
• If a cat or dog seems like a lot of work (they are!) then consider a small pet, like fish or a hamster. Any other form of life can uplift your spirit, and the little guys are probably less work physically and financially!

I know this post was a lot, but I hope some of my suggestions resonated with you! Taking care of all aspects of our pain is important, and I want to share some of the methods I've learned over the years. If you have any that work for you, I would love to hear about them, so write me below! Thanks for reading and I hope you have a good day! 

Journey to the Mayo Clinic

A few months ago, I came across the Mayo Clinic in my research. The Mayo Clinic, in case you don't know, is a nonprofit medical research group. The largest location is in Rochester, Minnesota. The institution has a three part focus: patient care, research, and education. I had heard stories online of people who had gone to the Mayo Clinic when they had exhausted all other options, and often had pain or symptoms that they could not effectively treat or diagnose. Some of these people even left with a diagnosis. At the time, I did not feel that I was quite ready to pursue this avenue, as I'm sure it is expensive, and Texas is a long way from Minnesota.

It was Time

However, after a series of disappointing appointments and procedures, and a lack of progress, my mom and I decided this week that we were ready to begin the process of applying to the Mayo Clinic. My mom began by simply calling the number on their website for the Minnesota appointment office. This first call was just to find out more about the process. Let me just say as a side note, everybody we have spoken to so far at the Mayo Clinic has been incredibly efficient, helpful, and kind. She explained to my mom the general process of applying for an appointment at the Mayo Clinic, and what our next steps should be to have the best chance of success.

Starting the Process 

The next time we called this number, my mom and I sat down together. We went though a list of my issues. We explained my symptoms, previous testing I have had done, the results of procedures I have had, and a brief history of my health for the past few years. After going over this information, we decided that since I don't know exactly what specialist or division would be best equipped to handle my medical issues, that we would start with general Internal Medicine appointment. Here, an internal medicine doctor will evaluate my concerns and order tests or consults form other specialists once he or she has seen me and my medical records. This way we don't start out with a gynecological appointment, and then find out my problem is gastrointestinal, for example. The woman on the phone tells us that our stay will last in approximately 5-7 business days, and the staff will try their best to schedule my appointments in that time frame. At the end of the phone call, she sends me an email with a link to an online form. The form will ask for further detail and information about my symptoms, how they have been evaluated thus far, and the results of those evaluations. The form also asks what my goals are for my visit to the Mayo Clinic. We were told to call back if we had any issues, and that the form would take 3 business days to be evaluated. Finally, after the form had been evaluated, we would receive a call to tell us whether or not my request for an appointment had been granted.

I would love to document this process and share my journey with you. Let me know if you have any questions, or if you yourself have any experience with the Mayo Clinic!

Source

Depression.

I'm just going to come right out and say it. Depression sucks. I am driven by an never-ending need to find effective treatment, while simultaneously feeling drained by overwhelming feelings of apathy, and depression. T.V. shows I used to laugh out loud at, hobbies I used to crave the time to practice. Now, I have nothing but free time and none of these activities I used to love bring me an ounce of joy. I feel completely lost.

However, I won't give up. One thing that has brought me joy is listening to podcasts and going on walks around my neighborhood. Getting outside is so important, and considering I am literally bedridden with pain some days, I am ashamed to admit that some days I don't even leave my house. Getting outside gives me a little taste of that vitamin D folks are always talking about, as well as the opportunity to exercise a little without putting too much strain on my body. With chronic pain, it's all about finding the balance between doing enough exercise to feel the benefits, without pushing yourself too far and potentially doing more harm than good. Luckily, activities that one enjoys are much easier to turn into daily habits. I mean look at that view!

That's all for now,

Gemma

Turn a Negative into a Positive

After leaving yet another appointment with more questions than answers, one could say that it's getting old. Due to the massive amount of pain I'm in, and the lack of improvement from my last procedure, my pain management doctor feels quite certain that my abdominal pain is not coming from the abdominal wall. His advice to my mom and I was basically to start at step 1. To go get second opinions.

Walking out of this appointment, I felt frustrated, exhausted, angry, and honestly, just fed up. I can't believe that after a year of appointments, surgeries, and treatments, my pain is more severe than when it started, and I have no concrete answers. However, I am choosing to look on the bright side. Going to new doctors and starting fresh gives me the chance to reevaluate my condition. To seek out the best specialists, and use their fresh eyes on my stale problem. I hope that they will have new ideas for diagnoses and treatments. They might see something that my other doctors did not, or have an idea for a procedure that my previous doctors did not think of. I want to keep pushing because I refuse to lay down and accept the pain. I will keep searching for answers.

And to end on the highest note, here is a picture of my adorable cat, Brees, cuddling with  a stuffed llama my boyfriend gave me after surgery.

Gemma

A step forward

It's been a long time since I've posted on this blog. Years in fact. I definitely got caught up with life. Finishing my college degree, starting work full-time, going on diability, and then quitting my job due to my deteriorating health. I spent last night in the emergency room, and left with no answers, yet again.

A small health update: I still have a chronic daily headache and chronic migraines. I have a fast heart rate that resulted from my cardiac ablation to cure my heart condition. I suffer from anxiety and depression. And, most debilitating of all, I have persistent left lower quadrant abdominal pain. I have had ruptured ovarian cysts and adhesions that were surgically removed. I've had a laparascopic hysteroscopy, a colonoscopy, and trigger point injections in my abdomen both with and without anesthesia (pro tip- get the anesthesia, they hurt like a mother). I have had this pain periodically since August of 2016, but it became constant after my laparoscopic hysteroscopy in March. I haven't seen improvements with any of the treatments I've tried so far, and it's getting to the point where even walking down the hallway is hard. I'm not really sure where to go from here. 
I have wanted to post here so many times. I read an article recently about perfectionism. How, as perfectionists, many of us can appear lazy because, many times, we won't even attempt a project for fear that it won't live up to our unrealistically high expectations. I definitely relate to this feeling. I am constantly putting things off because I don't want to fail. Tonight is a huge step forward. I am writing this post in an effort to push aside the fears and make a leap into a world that will likely involve some failure. But I find that, as I'm writing this, I'm kinda ok with that. 
I have an appointment with my pain management doctor tomorrow, so I hope to post an update here afterwards with some answers. Fingers crossed!

Progress through Appointments

Today I made some doctors appointments that I feel could provide some good insight into a lot of my issues. I will be seeing a sleep specialist at the beginning of June, who is also a neurologist, due to my sleep schedule being weird. Last night I slept from 12AM -6AM, and then 10AM-12PM, which is odd. My frequent awakenings in the night and trouble falling asleep are some issues I would like to discuss with her. Getting a good night's rest is important even if you aren't in chronic pain, so hopefully this doctor will be able to give me some answers and make my sleep feel more restful.

I am also going back to see the neurologist I saw last summer, whom I really like. He bases all of his treatment plans and advice off of neurological studies, and what the science tells us. He doesn't let his own preconceived notions about a more abstract treatment, such as acupuncture, prevent him from recommending that treatment to a patient. As an aspiring engineer studying math and science, I appreciate this. I also find it important not to dismiss more holistic methods due to my adverse reactions to some medications, which I may discuss in a later blog post. 

My head is getting more painful now and I feel I may be developing a migraine. Off to get a snack and rest! At least I have a little more hope heading into the next few weeks knowing that I have these appointments on the books.