Not just another statistic

I’ve been quiet for a while now and I wish I could say my silence is because I was so busy with life and doing so well with treatments, had adjusted to my ileostomy beautifully, that I simply didn’t have time to write.  Unfortunately, that isn’t what happened.  I nearly became just another statistic in this fight against chronic illness.  Too many of us have read the obituaries of others with Crohn’s Disease and Ulcerative Colitis that are supposed to be life-altering but not necessarily fatal.  Nearly all of those obits say the person died of “complications” surrounding their disease, not the disease itself.  Is there a difference, really?  Yes, there is.  Every fact sheet I can find says that although there is a higher rate of colorectal cancer and some other cancers in patients like us, none recognize the deaths from the increased risks associated with surgeries, drugs, etc.  Under complications you will find things like eye irritation or mouth sores but not complications that might lead to death or needing an organ transplant.

http://www.ccfa.org/resources/facts-about-inflammatory.html

That’s where I found myself these last two years, fighting, struggling and living day to day with those complications.  What started out in April, 2014 planned as a relatively simple surgery turned into a complicated surgery with 10 day hospital stay after more than one “hiccup”.  Things snowballed and 2014 turned into the year of nine hospital stays, two major surgeries, two minor surgeries, four other surgical procedures, four different antibiotic resistant infections, three picc lines, seven CT scans, stays in the ICU, acute care unit and telemetry unit.  So many antibiotics and tests in so many different departments!  Then there was the home health care nurse and physical therapist and insurance changes, not to mention drug changes.  It was all completely overwhelming and unbelievable, even while I was there, living it.

I spent 2015 trying to get some semblance of my health and life back together.  I’d been left barely able to sit up, not able to walk through the grocery store and in major pain.  Fear crept in.   Getting back on my feet enough to simply dress, eat, nap, make some dinner with my family or go out for a meal has taken a lot of work.  I have panic attacks over everything and nothing.

When I started this blog, I wanted to help others, raise awareness and hopefully let others know that you could do this.  You could still live in spite of chronic illness.  Now I need to know that myself again.   It’s time for me to tell the whole truth of all those complications, even if they are ugly and might not be very inspiring, because in the end, I survived.  Knowledge is still power.  Knowing what can happen, why it happens and what we can do about it may help someone else

Stay tuned . . . 

A few weeks before the 1st surgery in 2014.  I told everyone I was having "just a
little surgery" and made plans for a girls lunch in another month or so.  I had no idea
the dangers ahead or the changes in store.

IBD, Hysto, Frustration

It's December!  I want to say, how did we get here?  Wasn't it just April?  I feel as if I just blinked and the months have gone by.  And, by the same token, I feel as if I had been sidelined yet again while life passed me by and I could do nothing but watch.

When Moxie (my stoma) entered my life and half my guts left, that was supposed to mean the end of at least half my pain, the abdominal pain.  It didn't end.   I had the colectomy in March of 2013 and in the summer of 2013 started trying understand why I was still having low pain.  No, it wasn't a urinary tract infection.

I think I was tested for every kind of infection a woman can have including several that I would probably have gotten divorced had the result been positive.  Once again, tests leave you feeling violated and humiliated.  An ultrasound.  That doesn't sound bad.  Yeah, until you get in the room and discover how and what.

So after being subjected to tests that rob you of any dignity with IBD, when having to do them at a GYN looking for a problem it was NOT any easier or any more dignified.  And you know what?  The pain was the same.  I don't know how I would have known the difference between the two abdominal pains.  In fact, I wasn't sure that I did know the difference except that I kept a calendar and charted pain.  One pain made the other pain worse.  I already had the ileostomy so there are less guts to be inflamed for me.

Once again, I started reading and researching and found this is not an uncommon issue for women.  Cysts, endometriosis, heavy bleeding and painful periods are very common for women with IBD.  So why do our doctors not work together and ask us these questions?

Why must we go from one to another and search for answers?  Why do specialists stand alone like they are on islands miles apart in the ocean rather than being linked together like the paper chain around Christmas trees?  Why do we call or go in and report a symptom, only to be told, "you will have to see another doctor for that."    And once you already have a chronic illness or condition, then the doctors get even more complicated.

I want simple!  I want easy!  I don't want anyone else to have to go from their GYN to another higher risk GYN only to find out that if surgery is necessary, another doctor will needed, another office, another wait, more forms, more history (yeah this electronic stuff is not that good).

I want the doctor's we need to be like a mall.  They just refer you right next door and you get in next week, your paperwork is already there.  No filling out all new forms.  No bouncing back to the first doctor, you just go on to next one you need until they get it right.  Maybe we could save some time and energy in our healing.

In September, I had a total hysterectomy.  Because I have an ileostomy, I had a complex pelvic/oncology gynocologist treat me.  It took from April, 2012 to September, 2013, five doctors and me telling the doctors that something was wrong, I was having pain.

I'm healed from the surgery and I would like to say that I am pain free.  However, I still have arthritis, I may have another IBD surgery in my future and it's insurance open enrollment.  That's causing me pain at the moment.

Frustrated.  That one word describes how I am feeling with doctors, insurance, pharma, hospitals, and even the big "foundations" that are supposed to help us all.  Do you feel it, too?  There are so many individuals that have worked hard in grassroots efforts to reduce the stigma associated with our diseases and conditions and yet the big people, the ones with the real power don't seem to be hearing.  How do we change it?

Technology

Ah, technology . . . where would I be without you?  Confused, scared, feeling alone and probably in more pain is where I suspect I would be without technology.  Social media and Dr. Google both get a bad rap for many things these days but for learning about and connecting with others with chronic illness, they really are amazing tools.

In the first days of my illness, I had no idea how to cope or what might happen to me.  Just one symptom, vertigo, left me feeling completely isolated.  I found a group for people with vertigo and suddenly I was no longer alone.  The tests were no longer overwhelming or scary.  Someone else had already been there before me and had lived.  Imagine that! 

Next I received the psoriatic arthritis diagnosis.  There were so many well meaning people around me who said things like, “you are too young for that,” or “oh, I’m sorry, my family member had that and had to be in a wheelchair or couldn’t use their hands.”   Isn’t that is exactly the kind of thing you want to hear when you have just been diagnosed with a chronic illness.   And the dozens and dozens of cures people me told to try, well I could probably write a book just about those alone.  I might have gone crazy.

Reputable websites helped me sort out those things.  Oh sure, there are snake oil salesman on the internet.  Like the commercial says with tongue in cheek, “they can’t put anything on the internet that isn’t true.”   I keep that in mind and stay away from websites that can be verified.  Reputable and verifiable means having a physical building or magazine or network of doctors and people.  Maybe other reputable sites that link back to it and use the information or other networks that refer you to the site.  If you have heard of the website outside of the internet, then it might be a good one.

Good websites also provide many tools.  Medication trackers, allergy trackers and information, medication guides and interactions, pain trackers and guides besides care guides for your condition or illness.  They go beyond the standard description of an illness and point you to recipes, coping and connecting with other people like you.

Then we have the simple connecting with others.   I can’t even imagine how different my life would have been had I not reached out through the web.   I think I would have spent so much more time feeling isolated and very depressed.   I made read real connections with real people through groups, message boards and now all kinds of social media.  Those connections were more valuable to me than the nurse in my doctor’s office on a daily basis.   I have made real friends.

I have a portable TENS unit that I wear to help with pain.   All my ostomy supplies are neatly listed online and I can view my previous orders, see new items and get reminders for my next order.  I have applications on my smart phone for exercises, notes, health information and medications.  We have blood pressure and blood sugar monitors.  I have used biologic medications that I injected myself that came in one-time use pre-loaded syringes, no mixing, and no drawing up necessary.  We have so much new technology exploding it’s truly incredible.  I’m always amazed with what is happening next and yet at the same time disappointed that with all the advancement there hasn’t been more progress for autoimmune diseases and chronic pain.   Researchers and biomedical engineers, please keep at it.

Click here to see a list of Links and Resources for IBD,Ostomies, Celiac Disease, Arthritis, Chronic Pain.

A Professional Patient?

I have on staff, a general medical doctor with nurse practitioner, a rheumatologist, one gastroenterologist, one colorectal surgeon, a neurologist, an ENT/allergist, two gynecologists (I’m complicated since I have an ileostomy) and a host of nurses and lab technicians who assist those people.  You know what?  I was not meant to be a professional patient!   I am the care giver.

I was supposed to go to the doctor, get fixed, and go home.  Isn’t that the way it works?  You get a prescription for 7 to 10 days and by day 3 or 4 you are better and wondering why you need to take the rest of those pills.  There are many, many people with a chronic condition, illness or pain so I know there are a lot of you that can identify with that not working.  So, I accepted it when that wasn’t going to work for me and decided to just get on with it.  What’s next?   When I had one doctor, one diagnosis, one treatment plan, I could go in, get all the information, ask all my questions and come out knowing what I needed to do.   But when you have one auto-immune illness you are more likely to be diagnosed with another, like an arthritis and IBD in my case.  Multiple doctors, multiple diagnoses, multiple treatments and medications can get confusing.  You can begin to feel like you are the professional, like being a patient is your job.

That is not supposed to be me!  I’m the caregiver.  I don’t say this out of indignation.  (Well, okay, maybe there is some indignation there.)  This is actually what happens to me when I am in the office in a chair or on the examining table.  Doctor, “how are you?”  Me, “I’m fine.”  What?  Did I just say that?  Doctor, “how’s your pain?”  Me, “okay, I can stand it.”  Again, did that just come out of my mouth?  I’ve been doubled over!  Doctor, “do you need any refills?”  Me, “I’m not sure, I don’t think so.”  In my head, how could you not be sure?

A visit to the doctor with any member of my family, or any friend is completely different.  I am the greatest health advocate they have.  I will remember everything they need, have a list of symptoms, a list of question, jot down what needs to be remembered, ask about the medications and side effects, you name it.  I have had people ask me to go with them a second time after I have gone with them.  I had a doctor ask for me by name to get a health history for a family member in crisis because they knew I would have all the information.

So, what happens when we ourselves get in that chair or on that table that turns our brains into jelly?  I’m not intimidated by doctors so that can’t be the problem.  In fact, I am very comfortable with mine.  Is it just the fact that the whole experience is overwhelming and intimidating?  I find that all the things I tell other people to do so they have a good visit with the doctor, I do not do for myself.  I just go.  I don’t prepare.  If I am going with a family member or friend, I prepare.  Every time I leave the office, I say next time I’ll be prepared.  And next time, I’m not.

I think I need a friend like me who needs an advocate but can advocate for me.  If you are in the same place, find someone to go with you.  Or hey, give me call, maybe we can trade appointments.   At the least, get yourself a notebook.  Write down all your medications and all your allergies.  You can jot down your questions as you think of them so you will have them in the doctor’s office.   And you can make notes before you leave the office of things you need to remember to do.  Really, I should take my own advice.  But if I do, will I be a professional patient instead of caregiver?  Is that why I don’t?