chronic illness

Reality Accepted: New Dreams On The Horizon

Abdominal Adhesive Disease

The past few years of my life have been challenging. It is almost as if I never recovered from my bowel obstruction surgery. I was re-hospitalized several times during the course of recovery. I attempted to return to work but ultimately had to quit and officially file disability. Just as I was preparing for my final disability hearing, I had to have surgery #7 in order to remove my gallbladder that not only had decided to quit working completely but managed to create over 200 stones in the process.

That surgery itself was not a big deal. I actually remember waking up in recovery feeling relieved versus the usual “did anyone get the name of that train that just ran me over” feeling and begging to be put back under. I had been so disgustingly nauseous for so long that once they removed my kaput gallbladder it was almost as if I could breathe a sigh of relief despite having been cut open.

But it didn’t end there.

My surgery didn’t quite happen as scheduled. While waiting for my surgery date, I was in so much pain and so sick that I went to the ER and they decided to go ahead with the surgery that night. I went into the OR around midnight. By 9am, my surgeon was in my room ready to send me home but he wanted to go over his findings first. I vaguely remember what he said about my gallbladder other than it was being sent to pathology but what caught my attention was his description of my lower abdomen. He said my lower abdomen/pelvic region was full of adhesions and it was only a matter of time before I obstructed again.

In that moment, something changed.

The events surrounding my obstruction were traumatic and while I knew that there was a high chance it could happen again, the thought that another obstruction was imminent set off a whole new level of anxiety and fear. It was as if he handed me a grenade, pulled the pin, and left me standing there afraid to breathe for the fear of setting off a chain of events.

I have spent the last 2 1/2 years holding that grenade afraid to move.

Any time I have tried to ask that surgeon or another general surgeon why they didn’t remove the adhesions while I was already in surgery for my gallbladder, I never got a direct answer. One would say that if they weren’t in the way, they wouldn’t mess with them. Another surgeon stated that while it was obvious that the adhesions were causing pain (and affecting certain functions), I was considered too high risk to go in preemptively so they would wait for an emergency which only made my anxiety that much worse. The more anxious I got, the more questions I asked. The more questions I asked, the more vague the responses.

I couldn’t get a clear answer and all it made me do was hold onto that grenade even tighter.

I couldn’t move forward with my life until I had an answer.

Two weeks ago I had enough. I set up an appointment with Dr H, my endo doctor/surgeon that I have been seeing for over a decade. I put it all out on the table. All of the anxiety. All of the questions. All of the anger. It was all out.

She did the same. Instead of dancing around the truth (as some of the previous surgeons had), she told the truth, no matter how scary. The truth of the matter is that they don’t want to mess with my adhesions because they don’t want to kill me. The type and placement of my adhesions would make trying to remove or separate them an extremely delicate process. She described abdominal adhesive disease and the complexity involved in treating it and she said that unless it was absolutely necessary, the risk would be too great to go in otherwise.

I could finally put the grenade down.

Is knowing the details of just how dangerous of a situation I could be in because of my history and my adhesions scary? Heck yes. Absolutely. But knowing the truth allows me to process and accept it versus constantly fearing the unknown. I am a tangible learner. I need something in my hands to understand it and being able to recognize abdominal adhesive disease, even with all its dangers, allows me to take it in, process it, and find a way to move forward despite it.

Knowing the danger is better than knowing nothing.

For the first time in years, I feel like I can move forward. I didn’t realize just how stuck I had become until I was able to move.

I can breathe.

I am finally able to sleep which means I am finally able to dream.

 

Photo by Denys Nevozhai on Unsplash
bloggingchronic illness

Top 10 Posts Of All Time

top 10 posts of all time

It is so hard to believe that A New Kind of Normal has been in existence for over 10 years (almost 10 1/2!). Since thing were so crazy last year, we never really got to celebrate the 10 year mark, I thought I would take a day out of Bloguary to earmark the top 10 posts of all time here on A New Kind of Normal (well, at least they are the top 10 posts for the last 10 years)!

Here they are counting down from 10 to 1:

10) Things To Say (& Not Say) To Someone With Chronic Illness

9) What Is In Your Flare Survival Kit?

8) Mission Aborted: When Routine Procedures Go Wrong

7) Fighting The Tube: Recovering From Bowel Obstruction Surgery

6) Surgery Survival Kit

5) The Bowel Prep Survival Kit

4) One Little Word For 2014: Fierce

3) A Frozen Birthday & Bedroom

2) My Hair Hurts: Dealing With Tactile Allodynia & Fibromyalgia

and….drumroll please…..

1) The First 7 Days After Bowel Obstruction Surgery

 

I Am Bold

It is hard to believe that it has been over 10 years since A New Kind of Normal was born! So many amazing – and challenging – things have happened along the way but I am excited about what is going to happen this year and hopefully for many, many more years after!

Bloguary Day 9

Here is to Living Boldly for another 10 years!

chronic illness

4 Things You Need In Your Advocacy Toolbox

When you get diagnosed with a chronic illness, the first thing you need to do is learn how to become your own best advocate. Actually, first, you need to allow yourself to take it all in. Get upset. Or angry. Cry. Throw something. Eat a banana split (or two).  Then, when you are ready, pull yourself together and decide that you need to be your own best advocate.

These are the things you need in your advocacy toolbox:

1. Research.

I’m not taking about straight up Dr. Google or even Dr. WebMD because they will have you convinced that you are dying of rare condition that will have you bleeding out of your eyeballs any second. Don’t get me wrong, the internet is a great place for research but be sure to check your sources. Read books. Keep up to date on the latest research. You can set up Google alerts to be notified if posts or articles containing your chosen keywords (such as endometriosis research or gastroparesis treatments) are published. Blow your doctors away. By arming yourself with this knowledge, you are able to take a more active role in deciding your treatment plan because you know what the options are. I had to learn the hard way. One of the biggest regrets of my life was choosing to take Lupron. I hadn’t been diagnosed with endometriosis long and hadn’t learned better yet and by taking that medication, my body has been damaged for life. Damage I could have avoided had I researched my options beforehand.

2. Build a dream team of doctors.

When I started getting sick and my PCP told me that she suspected I had a “female problem,” I got extremely lucky that a new ob/gyn had just moved to town and she was assigned my case. The average length of time it takes a woman to be diagnosed with endometriosis is 7 years. From the time that my pain became debilitating to the time she had my diagnosed was 3 months. I saw my PCP in July, had my first appointment with her in August which started all the testing, and I had surgery to confirm endometriosis in September. I got lucky. I got lucky not only because I was able to be diagnosed quick but I got lucky because she was an absolutely amazing doctor. I’ve been with her now almost 13 years and everyone else nows how amazing she is and you wait an eternity for an appointment. But she’s worth it.

I wasn’t always this lucky. I’ve had to make a few chances to the line up to create my dream time. The first rheumatologist I saw didn’t believe in fibromyalgia but diagnosed me anyways then drugged me to the point I could hardly remember my own name. The first neurologist I saw seemed to sleep through most of my appointments as he always asked questions on his way out that we had spend the previous 20 minutes discussing. The first gastroenterologist kept telling me to eat more yogurt even though I was suffering with undiagnosed Celiac disease.

If you don’t feel like you’re being heard or treatment progress isn’t being made, there is no shame in asking for another opinion. Heck, demand it. The two most important things for me personally that I want in a doctor on my dream team is 1) I feel that am truly heard and 2) I am an active participant in deciding my treatment plan. Bedside manner is important but not the most important like I thought in the beginning. Dr H (my endo dr) is the warmest, most compassionate doctor on the planet and she has held my hand and cried tears of pain with me over loss and surgeries and cried tears of joy with me over our adoption news. Dr P (my rheumatologist) is a gentle soul. Not overly personal but makes me feel like a person, not just a patient or file and readily makes me an active participant in deciding treatment. Dr B (my pain specialist) has the personality of a wet mop and honestly if he smiles in an appointment I have to wonder if he got lucky that morning but never once has he made me feel crazy or like a drug seeker. He has always validated my pain. I’ve got other doctors but this just shows that there isn’t a cookie cutter mold of what your dream team needs to look like. We would all love to have a McDreamy or McSteamy on our bench but what is important is that you feel like they are on your bench – your team – and take your case seriously.

Chronic Ilness Advocacy

3. Don’t be afraid to speak up.

If you are in the emergency room and you don’t feel as though you are being heard, speak up. Ask to see someone else if you have to. Last year I went to the ER with an early small bowel obstruction. One of the hospitalists came at me with an NG tube. I explained my previous experience with the tube and that anatomically something prevented them from being able to insert the tube properly. The tube would just curl up in my sinus cavity versus descending downward. I was talking but I knew she wasn’t hearing me. She kept saying, “I’ll give you something to calm you down but we’re not skipping the NG tube because you are scared.” Finally, I just said stop and asked to see another doctor. When the other hospitalist came in, I explained the situation and she said no NG tube. Because there had been difficultly before, she wasn’t going to go in blindly and risk perforating something. If 24 hours of NPO didn’t clear the obstruction and an NG tube was necessary, she would consult a surgeon. The first hospitalist huffed out of the room NG tube in hand. The second just smiled at me and patted me on the arm as she walked out.

If you are in an appointment and have questions but the doctor seems rushed, speak up. Make them take time for your questions. It is their job. If they are pushing a certain treatment but you have concerns or reservations, speak up. If you are having a procedure done and are curious about what kind of equipment is used, speak up. If you had an amazing nurse during your hospital stay, speak up. Speak up about the good things and the bad things.

4. Have someone on board who can advocate on your behalf when you cannot advocate for yourself.

As important as it is for you to be a part of your treatment plans and on top of your research game with your illnesses, it is important that you have someone on your team that can call the shots on your behalf. They don’t need to be an expert in the field but they need to know about all your illnesses, your past history, and the medications you are taking. It would also be beneficial if they could go to an appointment or two so they can meet your doctors and get a better understanding of everything that is going on and get some of their questions answered. Also, it is also often very helpful for doctors to get an update on how a patient is doing from someone other than the patient. Sometimes we like to sugarcoat things or leave them out. Not that I would ever do that. Ever. It seems like an easy decision is you are married, have a SO, or are single and have a family member nearby that can help take on this role but if that is not the case, it may seem awkward to ask a friend to take on this type of role (I’m not talking life or death, power of attorney type stuff here) but it is extremely important.

My husband is an amazing advocate and so many times he has stood up and fought for my care when I could not fight on my own. I try to keep an updated list of medications in my phone but when the emergency happened in February, he just grabbed the bucket of medications from the bathroom shelf just trying to try to make sure the doctors had everything they needed. Unfortunately, this bucket contained not only my prescribed medications but basically medications for the whole family which confused the staff even more. This taught me a huge lesson on how I can do a better job of preparing my advocate to be able to do a better job of advocating in my place. These days our cell phones are like a second limb so try to keep an updated medication list, any allergies, a list of doctors you see regularly and their numbers, and a brief medical history (just the high points that emergency personnel may need such as surgeries, etc) and show your BAFF (best advocacy friend forever) where it is located in case of emergency.

 

There are my 4 items essential for any toolkit to be able to advocate for the best possible healthcare for yourself or for your loved one.

What you would add to the list?

 

Stock Images by Turquoise & Palm