My dadgum foot-

So almost exactly a month ago I had surgery on my right foot.  I knew I needed it a few months ago, but my podiatrist and I wanted to wait until I recovered from my gall bladder surgery.  I had a bone spur on the top of my foot that was hurting me.  I also had a small bunion, and my doctor said that if he didn't fix the bunion, the bone spur would come back.  And I knew he was right because I had the very same problem and the very same surgery on my left foot ten years ago.

It took about 8 years for my left foot to totally heal.  I knew it would be a long road for my right foot too, but I figured it was gonna hurt either way, whether I had the surgery or not, and at least if I had the surgery, it would eventually get better.  If I didn't have the surgery, the pain would only worsen.

Anyway, I had the surgery and everything went fine except for the doctor was sawing off my bone spur and the assistant or whoever was holding my foot skin back let go and the doctor sawed off a big chunk of my skin.  Also, the pain was so incredibly bad and so much worse than I remembered it being with my left foot.  Bryant called and the doctor gave me a stronger pain meds prescription and I was very grateful for that.  I wondered if the more severe pain had anything to do with my lack of Immunoglobulins, since Immunoglobulins reduce inflammation and actually heal the tissue. 

I had the surgery on a Monday and I got my infusion on Thursday night.  The next morning I woke up and my foot was swollen and the pain had improved some.  [Swelling is a good thing for me because Immunoglobulins swarm to injured areas to heal them, thus the swelling, so normally my body doesn't swell around an injury, because it can't, because it doesn't have enough Immunoglobulins to spare and send to the injury site.  Also, I can't run a fever because my body can't mount a response to viral or bacterial infections.  Even when my kidneys are infected or I have pneumonia, my fever is usually only 99 degreees.]

Bryant ended up having to take the whole week off to take care of me.  He had to carry me to the bathroom or wherever I needed to go.  I finally got to where I was able to crawl on all fours or scoot on my bottom.  When my knees got terrible carpet burns on them, I switched to strictly scooting around on my bottom.  Then my sweet mother came to take care of me the next week so that Bryant could go back to work.

Two weeks after my surgery, mama carried me to the podiatrist and he said everything looked good.  He looked at the x-rays and said my bones were filling in well.  He said to come back in two weeks, and if everything still looked good, I could stop using my walking boot.

Right after the doctor's appointment, my mother and I came home and she was working on cleaning and organizing my house.  [She always does that when she's here, and I'm so glad because I never feel like doing it.]  We really wanted to get an old white dresser out of the house because it was taking up space in the living room.  We started pushing it outside and I realized how heavy it was and I told her to just wait until Bryant came home.  She was bound and determined to get it out right then, so she said she would just do it herself.  And she pretty much did, until she got it to the threshold of the front door.  So I got on the backend of it and pushed, not even hard.  [And I had my boot on, mind you.]  When I did, though, I felt and heard a big pop in my big toe.  After that, I couldn't bend it back anymore.  I should have gone to the doctor right then, but I am stupid and sick and tired, so I didn't.  Even when my toe started sticking out far to the left, I didn't go to the doctor.

So last Friday was two weeks after the previous appointment, which meant it was time for me to go back to the podiatrist again.  I went in and told them what had happened.  They x-rayed my foot and I had popped the staple out and my foot was/is broken in two places.  He told me he needed to do surgery as soon as possible.  But when he saw my foot, he couldn't believe it...It was and is still not healed from the last surgery.  Like I said earlier, my body can't heal itself because I just don't have the Immunoglobulins.  I'm just a "slow healer."  Not to mention, I'm diabetic and that's hard on the feet too.  [The crazy thing is that my foot with two fractures wasn't nearly as painful as my arm bones, or my spleen, etc.]

So he looked at my foot and said if we did the surgery now, he wouldn't have enough good tissue to close the incision.  So we were trying to wait as long as we could to do the surgery and give my foot time to heal more.  I was planning to go in on Friday and have him check my progress.  Then on Monday morning Sadie was trying to get something out of the fridge.  She likes to open it and stand on the bottom so that she can reach things up high.  Then she turned around and jumped and landed square on my hurt foot.

It hurt like the devil.  I knew it was either broken in another spot or broken worse where it was already broken.  So I called my podiatrist and went in that afternoon.  They x-rayed it and it was definitely worse.  So I'm having surgery on Monday morning. 

Dear Sadie,

You started swimming lessons yesterday.  It was very hard on the both of us.  But I am determined to have you swimming before this summer.  I won't have you being around water all summer and not know how to swim. 

I feel like hell...

Bryant teases me when I say I feel like crap.  He says things like, "How do you know what crap feels like?".  So, instead I'll say I feel like hell.  Or maybe I feel like crap warmed over.  Or maybe I feel like I'm dying.  The last is probably the most accurate.  I really do feel like I'm dying.  Yesterday was my worst day ever, I think, or at least my worst day since I started the infusions. 

The truth is that I usually don't like to write about how I feel because, well, nobody wants to read that.  And I don't blame them.  I am such a downer.  And I really have had only bad things to report lately, so why bother?  Well, actually, I do have something good to report.  When I went to my Immunologist this week, I told him I was doing not very well.  He always feels my belly to see if my spleen and liver are enlarged, and before I even said anything, he said, "I'm feeling the end of your spleen way too much coming out from under your ribs."

For years I have had so much pain on the left side of my body.  It would lessen sometimes, especially when I was on strong antibiotics, but it was usually so bad.  When I was finally diagnosed last year, I knew it was my spleen that had been hurting me all this time.  About 75% of people with my disease have enlarged spleens.  Most of the people in my support group have enlarged spleens.  But in six years, during which time a million doctors felt my abdomen, and I had a million imaging tests done, no one has ever corroborated my story.  Over the last several years, I have definitely learned that I know my body more than any doctor, or especially any radiologist, and that my opinion and my guesses are right most of the time.  But it was so good yesterday to actually finally hear a doctor say, "Your spleen is very swollen."

And my spleen, I think, is probably more swollen than it has ever been.  When one's spleen is swollen, or when one is suffering from "Splenomegaly," there are a lot more things going on than just having a swollen spleen.  First of all, Splenomegaly is not an isolated disease...It is always caused by another disease or diseases.  So instead of being it's own disease, it is more like a symptom of a bigger problem or more of a serious disease.

And when my spleen swells like this, it is so incredibly painful.  It hurts so bad.  It feels like my ribs are breaking.  It makes my left shoulder, neck, and head ache like crazy.  My chest is so swollen underneath my left breast, that it makes it literally a whole cup size bigger than the right side.  And when a spleen swells like that, it interferes with everything...especially intestines and digestion!  And digestion is something that is happening in your body all the time!  So it hurts me all the time! It blocks and puts so much pressure on my intestines. 

And it puts pressure on my uterus and ovaries, so I have really bad cramps. And it puts pressure on my left kidney, so I feel like my kidney is infected, and it may be...I haven't checked.  I've got too many other problems right now.  And it puts pressure on my stomach and my stomach hurts so bad, like I have ulcers again, and I may, but - yep - you guessed it...worried about too many other things right now.  And it puts pressure on my ureters and everything is crowded, so my bladder keeps getting infected, even though I'm on a permanent antibiotic for my bladder and kidneys!  And it puts pressure on my left lung, which I'm pretty sure is why I got pneumonia in my left lung last week.  The dr said I had no lung sounds in the bottom of my left lung.  And since everything on my left side is so crowded, my right side hurts too.  I could go on and on, but you get the picture.

So, even though I already knew the answer, I asked my Immunologist, "Is there anything we can do to make it go down?".  And the answer is that the only thing that makes the spleen go down is steroids.  And since I'm on 21 medications already, we really don't think I should start on another one.  Plus that, people with Cushing's should NEVER, EVER take steroids.

Also, my nerve pain has been getting worse, especially my Trigeminal Neuralgia, which leads to terrible headaches too.  I'm sure it's somehow related to my teeth dying (very painful deaths).  I had to start another medication to help with it.  And I have to start going to yet another specialist...probably the only one I didn't already have...a Neurologist.  It looks like I may have MS or some other type of Neurologic disease. 

It's just frustrating because no matter what I do...whether it be eating well or resting a lot, my disease is progressing...fast.
Thank God my mother came out to help with my last surgery and is coming out to help with my surgery next week too.  And Bryant's boss is so great about me being sick.  Well, he has to be because of the Federal Family and Medical Leave Act .  I really wish we could live in Alabama.  I don't see how we will be able to stay here if my disease keeps progressing like this.  My friends are really great about helping me...they take the girls home from school for me almost every day now.  And they are always bringing me meals and helping me with other things, but things seem to be getting so much worse so fast, and it's not their responsibility to take care of me and my family.  And Bryant is already so stressed.  He has to work 40 hours plus a week.  Then when he gets home, he has to do things Dad has to do plus the things Mom can't do, which is a lot of things.  And Bryant's mother comes and helps when she can, and we really appreciate it, but she works full time, so she can't come and help very often. 

Oh yeah.  And I went to the eye doctor this week.  Between my optic nerve head drusen and my thyroid issues, I have absolutely no extra room around my optic nerves.  If things get too tight in there, I'll have no other choice but to take STEROIDS.  But for now we will just keep monitoring things.

Things I'm very much looking forward to...to offset my feelings of despair right now:

Enslen Family Reunion in June
driving and riding with the girls on Grandaddy's new golf cart this summer
my infusion tonight...hopefully it will help my spleen go down
Harry Potter World...Yep!  We're going to Harry Potter World in June
trying to read all the Harry Potter books before Harry Potter World
hangin' with my bestie, Farrah, and staying at her house in June
my bestie taking me fishin' at the beach
going to Orange Beach in June
the drive from Orlando to Orange Beach...I'm sure it's beautiful, from what I can remember.
going on a date with Bryant...hopefully soon
getting my fabulous new glasses

Two weeks and three days later...

Getting better.

Photographs by Sibley

Sibley is so talented.  She is already a good photographer.  And she's really good at making greeting cards and little inspirational posters.  I text messaged one of her creations to my family members, and they loved it!  So I thought I would share a few more.

My gall bladder surgery was relatively easy, but my foot surgery is more than making up for it.