Anticipation

Tomorrow is the day.  It is the day that I've been preparing for.  I am hopeful.  I am terrified.  So many questions, and at the same time, only one that really matters.  Is there hope for a cure?

Will I be able to go back to being a fully functioning person again?  Will I be able to leave the house without my emergency bag?  Will I be able to do things like play board games with my kids without my blood sugar dropping?  Be able to laugh so hard that my stomach hurts?  Take my dogs for a walk?  Go from my little couch to the bathroom and back without being fearful?  Will I be able to read again?  I really miss reading, and walking, and laughing hard.

It all boils down to the one question that really matters.  Is there hope for a cure?

Tomorrow is the day.  The day that a doctor might be able to start answering that question.  I am hopeful.  I am terrified.

Phase 3

I am sitting here in my hotel room in Arizona recovering from my cross-country flights and pondering what I should say about phase 3 of my journey.  I started out taking medical leave more than a year ago.  That's the process.  After being out for something like a month, I was able to go on short-term disability.  I requested a referral to the Joslin Diabetes Center in Winston-Salem, NC.  I had already exhausted my resources in my surrounding area.  Hy husband and I had been doing a lot of research about what might help with my health problems.  Only 2 place in the country had done actual studies on how to help people with hypoglycemia to this extreme that occurred after gastric bypass.  Joslin was one of those places.  The center in Winston-Salem was not the center that had actually done the study, but they would have connections with the center that had.  Last summer I started seeing a doctor there.  She had me meet with a nutritionist in the weight-loss center at Wake Forrest Baptist Health (Joslin is connected with them).  We tried more dietary changes, more medications.  One medication was helping my hypoglycemia but gave me severe side effects.  She put me on the 2 separate times, but I could not handle it.  While she was on maternity leave, another doctor had me do a test there to determine if I met the qualifications for the Whipple's Triad.  I didn't eat all day.  I was in their office walking laps.  Nothing.  My blood sugar didn't drop even a little.  I did not meet the qualifications.  Since I didn't eat, my pancreas didn't get the jump start.  That doctor wouldn't do anything else for me.  I had to wait for the other doctor to get back from maternity leave.  She did some research and consulted with other doctors, then had me go in for a mixed foods test.  I went in with a cream-filled donut and a chocolate chip muffin from Dunkin Donuts.  I ate a bit of each.  I walked a bit.  Then BINGO!  I dropped to 41.  That put me in the running for some more elaborate medication.  This time I had to give myself an injection 2 or 3 times a day.  After just a couple of doses my blood sugar was dropping into the 40s and 50s all day.  I was eating and eating, and it just wouldn't get high enough or stay higher.  I went to the ER that evening because I was so scared of what would happen when I went to sleep.  They kept me there all night to make sure I was stable.  I stayed in the 80s the entire time.  The doctor at Joslin told me not to take any more, and that there was nothing else she could do for me. Yet another doctor stumped.  She then referred me to the Mayo Clinic.  I chose the Arizona site so I would be closer to my parents and sister.  

My blood sugar never did fully recover from that last medication.  My fasting blood sugar is in the low 80s instead of in the 90s like it had been up until then.  I drop at random times even if I am just sitting on the couch.  Any amount of physical activity make it drop.  It is the worst it has ever been.

We had thought it would take a couple of months before I got in to the Mayo Clinic.  NOT!  I got the call 2 weeks ago.  I told them I would need at least 2 weeks to get everything that they needed and to make travel arrangements.   Those 2 weeks I worked so hard to get all of my medical recorders ready for them as well as everything else that goes along with a trip like this.  Yesterday afternoon I boarded the plane.  That brings everyone up to Stage 4.  The Mayo Clinic.  I will be posting updates as I see doctors and have tests done.  Stay tuned for more about my journey!

Phase 2

Phase 2 takes me into getting treatment for my hypoglycemia and taking care of the iron deficiency issue.  During the summer following my gastric bypass, I had 2 sets of iron infusions.  I also went to a few doctors about my blood sugar.  One of the endocrinologists decided to try Victoza ( I had already tried a few different medications).  The Victoza was able to get my blood sugar stable enough to return to teaching, but I still could not be very active without my blood sugar dropping.  I returned to work in August.  My iron was still not staying high enough, so I went to my gynecologist about how heavy, long, and painful my periods were.  They found out I had polyps, so they did  D and C.   that didn't help the problem, so that fall I had a complete hysterectomy.  Just before that, my regular doctor tried me on a new med to help with pain.  I was exhausted from the constant roller coaster, it felt like I was spiraling out of control.  I had extra responsibilities at school along with a new administrator.  I ended up walking out and telling my administrator that I was leaving and didn't know when I would be able to return.  It was about 2 weeks before I would be out for my hysterectomy, but I felt hopeless.  I went to a few counseling sessions and met with someone about my depression and intense anxiety.  That is when I found out the the new medicine was not compatible with one of the meds I was already on.  I stopped taking it, and life didn't seem so impossible anymore.  I did, however, get an official reprimand from the administrator at school.  I understand why, but at the same time I felt that the administrator was not willing to look past my behavior during the brief window of time there to see the person I truly am.  Things that I said and did while on that medication and broken down due to illness turned people that I considered friends at school into people who still do not speak to me.  It still hurts.  I try not to think about it much, but it still rears it's ugly head at times.  

The hysterectomy was successful at curing my iron deficiency.  Hooray!  Something positive!  I returned to school in December.  Just in time for the winter program (I teach music).  I was still out of whack between my blood sugar and hormones.  I handled more things poorly, I lost more friends.  Winter Break came and went, I went back into the classroom.  Then my endocrinologist decided to add Metformin into the mix to see if that would allow me to be able to be physically active again.  Immediately, my blood sugar started dropping all the time.  She tweaked my dosage and how I was taking it, but nothing helped.  She took me off of it, but it was too late.  The damage was already done.  My blood sugar hasn't been stable since then.  I had to go on short-term disability.  There was nothing else she could do for me.  I had stumped yet another doctor.  I haven't been back to work since then.  That leads to Phase 3....   

Still on the Journey....

It has been quite some time since I have posted anything on this blog.  I will now do my best to catch you up on the happenings of my journey toward being healthy.  The wonderful things that have happened since my gastric bypass, and the debilitating horrible illness that has taken over my life.  It is hard to believe that I have been living this way for such a long time, but as you will see, I have done everything I can to adjust and overcome.

My gastric bypass went well.  I had a huge problem with pain after the surgery.  Once I got home I did better.  I shed weight faster than anyone expected.   I followed all of the rules.  A couple of month after the surgery I had to have the esophageal opening stretched because it was so small I couldn't eat.  I spent a lot of time vomiting.  I only had to have it stretched once, and that did the trick.  In late winter/early spring I started walking a lot.  My husband and daughter joined me in walking the Glow Run 5K.  It was a wonderful milestone for me.  I started training to get faster, and I was finding more 5Ks to walk in.  That April, however, I started feeling really bad and shaky about 15 minutes into my walking.  I started checking my blood sugar, and it was low at these times.  I contacted the surgeon's office, and they told me I would have to go through my family physician.  I consulted her and my nutritionist.  No matter what I tried, my blood sugar continued to drop.  By the end of May it was dropping for no apparent reason.  I had to take sick leave for the rest of the school year.  Then I found out I was also chronically low on iron.   I had to start iron infusions.  I had 2 sets of iron infusions.  That started another phase of my health journey.

By the one year mark I had lost over 100 pounds, and I was thinner than I had been my entire adult life.  I will continue with phase two in my next post....