Oh Immune System Where Are You? And Lungs??? Knock it off.

When I was a kid. I was sick almost constantly. Whenever I got anything it would go live in my lungs for a while. It was my normal for my mom or dad to spend the night or take shifts in my room holding me up so I could breathe. It was normal to cough until I vomited. It was normal to take more meds than an elderly person. This was my normal. Staying in when it was too cold. Swallowing pills as a preschooler-- all my normal.

My lungs still suck and whenever I get sick- it goes to my lungs and lives there, for what seems to be forever. I still cough with enough force that I sometimes throw up. But it is not as bad as it was-- by a lot. Now, after I am sick for a few days and coughing my stomach hurts! As a kid my stomach muscles were so strong- all the coughing in the world would not make me sore.

As previously discussed- I have an eating disorder, I am maintaining my weight (sometimes white knuckling it) but there is the aftermath of the time that I was in the midst of it.  My immune system is one thing that was pretty much destroyed.  And it sucks being sick.  My normal is sick. The good thing is my kids have great immune systems and usually act as Typhoid Mary.  I'd much rather be sick than them.

Because, looking back, I cannot imagine the frustration, helplessness, and desperation when I was sick so much that my parents felt. When my kids are sick, I would literally give my left arm to take it for them.  How many times have parents prayed to which ever G-d they choose to please please please let them take whatever is ailing their kids.

And it took me being a parent for me to see how much my parents must have begged for the same.  Let them take the bad tasting medicine. Let them stay up all night coughing. Let them get stuck again. Anything...just make the kid better.

So, thanks Mom and Dad for staying up with me so many nights.  Taking me to endless doctors. Cleaning up when I threw up. Waiting in boring hospitals for another chest x-ray to be read. For teaching me to swallow pills.  For convincing me to take the bad tasting medicine- even the truly awful stuff.

I can't imagine what you went through- but thank you for doing everything you could.

it has been a long time huh?

I used to write pretty regularly right?

And then I kind of disappeared? So what then heck?

A lot.

When B got hurt, and I had my hip surgery, I got kind of thrown. Then my kidney acted up and spend lots of time in the hospital and fell into a depression and anxiety that just couldn't lift.

Sure-- B didn't help one of the more cutting things that he said that still sticks with me was, "normal people aren't this sick" I needed to get it together- like this was my choice or my fault. It really hurt and was very cutting..  If I could get my body to cooperate I would in a heartbeat.

Then horrible news-- I carry the BRCA1 gene and hysterectomy. So more surgery.  More kidney.  More depression-- and so much went to hell.

I felt like I was holding my life together with string and a prayer.  I didn't even have pole to fall back on.

My blog has always been kind of open about my struggle with mental illness so I feel I should be frank about this too.  It was hard.  And  I made the biggest mistake than anyone could make. I went off my meds--- stupid I know.  So stupid.  I felt initially like maybe my brain could figure itself out and I wouldn't need meds to regulate my brain chemistry. I'd go off my anti-anxiety meds-- but I won't dare go off of blood thinners.... why do I give blood thinners so much more importance than my mental health? I am back on my meds.  Things are normalizing.

Depression and anxiety are beasts-- they just follow and sneak up when I am not expecting it.

In a nutshell that is where I have been.

Its been quiet around here huh?

Well--- sometimes no news is good news, sometimes no news is just busy, and sometimes, no news means my kidney is up to trickery and I am having hard time accepting it.

I got sick in June.  Like I do, I wished it away, figured that it was stress and it would get better.  I went to the doctor after a few days and he gave me antibiotics and all was well.  A few days later, I couldn't keep anything down.  Even the Zofran for nausea. So went to the ER. After waiting a year and a day the doc took one look at me and admitted me.  She seriously didn't even run labs first. 

7 days.  7 days on IV antibiotics to kick this infection.

Home for a few days. 

Then sick again. 


This time with scary bacteria.  My kidney does a go big or go home thing apparently-- and it goes big.

So now I am on antibiotics-- they make me very very tired and have some other fun side effects. Also learned today that I will need to investigate some funky stuff on my ovaries further.

But........

I am ok. My kids are great, having a wonderful summer. B is wonderful. life is beautiful

Right now, I can be awake for about 2 hours before I need to sleep again, so I will write more when I have more energy.

Horrible Nightmare

Last week I had to go to the doctor for my hip.  While I was there, something horrific happened.

B was badly injured training at a live fire drill.

One minute we were texting each other about my hip, he said that he had to go drill, next thing I know my phone was going crazy as he had fallen trying to force open door as part of their training. When he fell he broke his leg.

Seeing the text that he was hurt but not knowing what was happening was terrifying. Not being able to help was frustrating.

As a mother, my job is to fix things. Make things better.  There is nothing that I can do to help him. Nothing I can do to make it better.  All I could do was go there and be there.

The break was bad enough and in a place that required surgery, I have had a lot of surgery, but waiting for someone to have surgery is something I have less experience with.  Sitting there, watching the screen with his case--- waiting for screen to advance to "surgery complete".

B's job has always scared me- I love and respect what he does, but it scares me.  Because he could so quickly be injured. Nothing is a guarantee.  Every time we talk we end it with "I love you, be safe".  I will not let him off the phone until he replies "I always am".

It has been hard for the kids- he is like superman.  He comes and fixes things and saves the day. His job is actually to save people.  He is not here a lot but when he is he is fantastic with them.  No one gets a better welcome than when daddy gets here.

Truth be told, I am a little jealous about how the kids are so interested in helping him. When I get hurt or have surgery nothing changes, the requests keep coming: "mama what's for dinner??" "where is my shirt?" B gets hurt--- totally different story- they are all over him helping.  Which, honestly is good.  He is dad- and a pretty darn awesome one.

Seeing the message that B was hurt was the most horrifying thing. My stomach dropped a million miles, I started sweating, I was sick to my stomach.  He annoys the crap out of me and irritates me beyond belief, but I love him.

When the doctor told me that he did need surgery, I got light headed--- and its not my leg! A doctor can tell me I need surgery and that is fine, I can deal, but not someone I care about, that makes it scary!

I do have new respect for what B had to endure in the waiting room for me- my surgeries were much longer and I have no idea how he managed.  Being the one unconscious is much much easier.

When he is better, I will have to find something new to say other than "I love you, be safe" because much like the kids-- he clearly doesn't listen.

I am thankful that he will heal.  I am thankful for my sister who saved the day. I am thankful.

Bringing Summer Back

It was nearly 90 degrees here last week for a day and I decided to live it up with the kids.

We went to two playgrounds and then to the Arboretum- which is one of our favorite places one that we have not been to in a while but once there it was like revisiting happier times with my like minded mama friends from whom we have drifted away or who have moved away.

We must give off a pheromone of crunchy family as we immediately started chatting with a mom dabbling in crunchy life.

It was almost like before I got sick.  Before I started living live around doctor visits and pain, and I loved it.  So did the kids.

Honestly, I hurt. My lack of kidney hurt. My incisions hurt. But it was worth it.

It was a great way to start the summer.  I even got my first sunburn of the season. 

Don't tell me to calm down

I have anxiety.  At times it can feel crippling.  Having someone tell me to calm down is like pouring gasoline on a fire: it does no good- and actually makes it worse. If  'calming down' was that easy don't you think I'd do it?? Would you tell someone having a heart attack to just stop? No?  (I certainly hope not, at least.) Then don't tell me to calm down.

Its insulting to be told that- as if I had some choice in the matter.  Anxiety is not something that I can schedule.  It just is.

Another thing not to do-- for the love of all that is holy- do not try and surprise or scar me.  I may surprise you by hitting you.

Kidney update

It came to a nephrectomy.  A radical step. Even the procedure name has 'radical' in it- Radical Nephrectomy.

It was not a decision that I made easily.  It took 4 years an a lot of attempts to fix it to get here, and now it is done.

I was left with 2 options: an ileal ureter and nephrectomy. The ileal ureter had the potential to save my kidney but was not a guarantee. The nephrectomy would cost me a kidney but would be the end of that kidney's drama.

The ileal ureter is a really involved operation and I was not a candidate for laparoscopy meaning a long incision lots of pain and a long recovery. With my clotting disorder- this would be really risky.  A nephrectomy being much a much simpler procedure and much less pain and time on recovery.

The surgery was a week ago tomorrow- and there is significant pain- but I feel better than I did before.  I don't feel sick.  I already feel better now than I did for the past few months before surgery.  

Losing my kidney has not negatively impacted my total renal function at this point, and after getting in there, my doctor completely agreed that the kidney had to go. 

So now to recover and make up for lost time... what am I going to do with all the time NOT spent in doctors offices? 

Anxiety in my head

Do you have anxiety?  I do.

Living with anxiety is like living in a pressure cooker.  My thoughts race so fast that I can't put words to them or slow them down long enough to even breath.  My heart races, breathing quickens, and muscles tense- and that is an average day- being engulfed in a sense of terror for no reason feeling like I could lose my mind and jump out of my skin. 

When I found my current doctor, I was suffering from this pretty acutely.  Thankfully, this was an easy one for him to pin down and immediately started me on meds to help calm my mind.  I do not advocate going on medications for every little thing, but there are times when they are necessary.  Sometimes it is a short term thing sometimes it is a long term one, which ever it is- its ok.

People should not feel stigmatized because they are sick.  Whether the sick is a brain thing or a kidney thing or whatever.  It is no ones fault.  Sick is just sick- and sick people need care- not judgement. So I will be very open about my experiences- maybe so others will not feel stigmatized or alone.

When I started the meds and they started working, it was like my head was quieter.  My brain and thoughts slowed to what must be a normal speed. It was amazing to feel that.  Is this what normal people feel like all the time?  I could sit still, I didn't twitch.  I could sleep.  It was like someone stopped pressing fast forward in my head.

Now, especially during stressful times I have break through anxiety and I need to tweak my meds and work on meditation a bit more but now more than ever I don't feel a fight or flight response when the doorbell rings.

Hyperemsis Gravidarum

Oh Duchess (or Princess) I feel for you.  

Hyperemisis ins not just morning sickness it is really hell, absolute and total hell.  It was wanting to die but knowing you wanted your baby.  It was actually considering abortion.  It was going on anti nausea meds meant for cancer patients.  It was painful.  I have had experienced it complete with home IV therapy. 

Whats worse is unless you have been there, you can't understand.

Hyperemesis can cause re-emergence of depression or anxiety.  It is very lonely.  

I remember wanting to hit anyone who brushed me off as having morning sickness- but I couldn't move without being dizzy or puking.  I questioned myself a lot-- was I doing the right thing? Was I just being dramatic?  Was my doctor treating me effectively? I desperately wanted to explain to my husband how hellish it was and being so angry when he minimized it. 

The judgement.  Oh the judgement was hurtful.  It cut deep. 


 The thing that helped the most was finding other women who had been there.  So my advice to anyone who has hyperemisis is to know that you are not alone.  You are not weak-  you are stronger than you know. 
Find a community who will support you and lean on them. 

Inside the mind of anxiety

Oh mental health....why must you require such diligence.

I am very prone to anxiety.  I can leap to an absolute catastrophe in my head in minutes- ok more like seconds.  When I am having anxiety issues I am very irritable.  This is good for no one.

My prescription for my meds ran out not that long ago and I thought it is 19 days... I can make it through 19 days. I was so so so very wrong.

Aside from the physical issues associated with suddenly stopping medication I was batshit insane, and this is an insult to bats (sorry).  Headaches. Crabby.  Over-reactions. Not to mention my dear friend the eating disorder was right there to greet me.

Yesterday, after deciding I could not put myself or my family through another day of crazy mama- and begged for more meds.  I promised I would keep my appointment but I needed something to get me through.

Thankfully, my doctor understood.  She called back to say the prescriptions had been called in. I did a happy dance and flew to the pharmacy.

Of course- the pharm tech only heard ONE of the prescriptions being called in- there should have been TWO. I almost died. Sweet relief was coming to be snatched away from me.  The pharmacy agreed to call my doctor-- lo and behold-- there SHOULD have been two scripts not just one.  Got home and took my meds in a few days I should see some improvement.

Moral of the story: Going off meds is a BAD idea.  Second: know your meds- your pharmacy may not.