The Drawing Board.......

I don't even know what the phrase "back to the drawing board" would even be for me right now.  I had to stop the Prozac after three days because it was giving me the same effects as the other meds.  Thumping, wracking heart beat, lightheadedness and weird eyesight things.  So I got some new stuff called supposedly "created for patients just like me".  Well today is day three and guess what?  Same thing.  I don't know what to do anymore.  Obviously I'm going to stop taking it, but I don't know where that leaves me.  What if I just can't tolerate meds anymore?  I'm just going to have to go back to the natural/herbal drawing board.  I just want to feel like my old self again, and I'm afraid I won't ever be able to because I respond so badly to meds.

On another note, my gastroenterologist is being really strange.  He usually gets back to me right away when I email him, but I emailed him on Sunday and again on Tuesday and then I called on Wednesday.   I still haven't heard back from him.  This is just very unusual and odd and I'm starting to worry.   What do you do when you are seeing one of the best doctors in all of New York City and they can't help you?  Where would you even go?  I am sure if he can't help me he will give me a referral.  At least that's what I hope.

I am losing hope a little more every day that we will be able to have a family.  I need this taken care of so we can start seeing the RE.  I don't even know what to do about anything anymore; it is so discouraging.  I mean, maybe with H's bipolar disorder and my depression/anxiety disorder it is best that we don't raise kids.  Maybe we are just not strong enough.  Maybe this is the universe telling us that we need to take care of each other and ourselves and that all we can really handle is cats.  I don't know.

I am freaking out about starting my new teaching job.  I have been shadowing the teacher I am replacing for the past two weeks and it seems like it will be good but a lot of work.  I am not afraid of doing a lot of work, but I feel so shitty that I am worried I won't do a good job.  I feel like I am caught between a rock and a hard place.  H has realized that as much as he would like (and I would like) for him to be able to quit his misery-making job after my benefits kick in in April that it would be very ill advised.  The reality is that we both have health conditions that require constant attention and we can't be without health insurance.  If I don't get a permanent postition for September then I will lost my insurance as of August 31st, and if he doesn't have a job with benefits then we are fucked.  I am glad he has come to this conclusion because I feel terrible since I was the one to suggest he quit in April.  I would love to see him leave this job but we are unfortunately once again stuck between that rock and hard place.

Things are tough.  They really are.  Last night I just cried and cried while listening to this song after dinner.  H hugged me and said this should be our mantra right now.   I am trying.  Truly I am.

I love this video because it is so real.  This is H and me right now.    

Back on meds

Well, I did it.  I went to my psychiatrist's office and got Prozac.  We'll see how it works out.  I'm mostly afraid it will give me terrible side effects.  Last year I tried going back on for a bit and Zoloft and even Lexapro which I took for eleven years gave me horrible racing heart beat.  It was awful.  I couldn't sleep and I felt like shit; it was wracking my whole body.  I just want this to work because I know that if and when the time comes and I need to make the choice I can stay on Prozac through pregnancy.  So we'll see what happens.  I am very hopeful but of course I still feel like shit (obviously).  I just don't want this to be my life anymore on any level.

The Last Straw

I am going back on meds I think.  I have been unmedicated for a year and a half with a short time in the middle where I went back on them.  I literally can't do life anymore.  I started a new job this week which is great but I remember how hard it is to work when I feel like such shit.  My stomach hurts so bad that when I walk around I just hug my arms around it.  It is huge all the time.  I still don't know what's wrong.  My gastroenterologist put me on antibiotics to try and change the flora in my gut.  I got a nice yeast infection from those for Valentine's day.  I also had a complete and total meltdown last night.

I told my husband that I felt that I must deserve all this shit.  That I've tried so hard in my life to do the right things and be a good person and it's just gotten me nowhere.  I got sick with my pelvic pain last year and lost my job and my best friend.  As soon as that was over this began.  I just can't take it anymore.  I told him I didn't deserve him.  I was mean to him because he was complaining about his job; I told him I couldn't have that conversation anymore.  He is miserable because he hates his job.  I am miserable because I am sick and can do nothing about it, because I am going to be 35 in three months and am still childless, because my husband is miserable and because I am straight up depressed.

I can't believe I didn't see it sooner.  I have taken no joy in any of the things I like to do for months.  I am a singer by nature; it's what I do, it's who I am.  I am a music teacher.  H and I met through music.  I sing in an a cappella group and I used to love practicing and working on music; now it's a chore.  Cooking and baking were big hobbies of mine, but food makes my stomach worse so even though I eat it always gives me anxiety and worry.  So that's out.  I don't want to do anything.  I used to be so passionate about so many things in my life; now the only thing I have been passionate about is getting healthy so we could start a family................

But that's out for now too.  I realize that in big huge bright lights now.  We are avoiding until I get better and until we can figure out our shit.  I told my husband last night that once my benefits kick in in April he should quit his job, even if he doesn't have anything else lined up.  I just can't deal with him and his job misery anymore.  He has no idea if he wants to work for himself or find another job.  I really don't give a shit what he does as long as he is happy and making some money.  I would be perfectly happy to be the main breadwinner.  I feel terrible that I am so mean and short about this with him and I know it isn't really me to be this impatient and cranky and straight bitchy.  I know that in reality it is because I don't feel good and I am getting to the last straw with it.

I am hoping that if I got back on meds it will help me cope a little better and just help me to get through.    When (if) the time comes for me to think about pregnancy again I will cross that bridge when I come to it.  The issue is that the last time I went on meds I had terrible trouble with racing heartbeat.  Even when I took Lexapro, which I had taken for eleven years prior to being off of them.  I hope I can find something I can handle this time around again.  But whatever helps me is what I will do.  I can't stand living this way anymore.

Fuck everything

I hate everything today.  And yesterday too.  I am so goddamn sick of being sick I could just scream.  After all the shit I went through last year, less than three months after my surgery I came down with this weird stomach thing.  It's like bloating and pain and sometimes other symptoms that come and go, but the sensation and the discomfort and pain do not go away or get better ever and there is nothing I can do that helps.  I have had every test there is and nothing ever comes up.  I had my pelvic pain specialist recommend the best gastroenterologist she knew of because fuck going through all these small time doctors anymore.  I went to one and basically used him for all the tests so that by the time my appointment with Dr. K, my doctor in the city, rolled around I had all the test results to bring him.  My other doctor said to me very casually that "sometimes these are symptoms of ovarian cancer."  He had in his possession copies of all three transvaginal ultrasounds as well as a pelvic abdominal ultrasound that all showed normal ovaries.  And who says that to a young woman like that?!?!  I was so pissed. It was that moment that I knew I was going to go nowhere with him.  I love Dr. K and will continue on with him until he says he can't help me.  But so far I have gotten nowhere.  I have been on the FODMAPS diet, I went gluten free for two months, I have taken a food allergy blood test--NOTHING has helped.

And the pregnancy announcements.  Oh, the pregnancy announcements.  They are coming in like a train that just won't stop.  TWINS.  FOR TWO DIFFERENT PEOPLE IN MY LIFE.  I just can't anymore; I seriously can't.  We had all our IF testing done and it all came up fine, but we can't pursue it anymore at this time because I need to wait at this point to resolve my stomach problems.  So we are currently TTA and I HATE it.  I am going to be 35 in May.  We started TTC in August of 2012 when I was 33.  Then pelvic pain in October 2012 and it has just been a constant steady stream of fuckery since then.

I would give anything to just feel normal again.  To enjoy my life.  To have the chance to be happy.  To eat without freaking out.  I don't understand how I could go from one illness to another so goddamn quickly when they couldn't be any less related.  My doctor thought that perhaps the bloating was due to muscle dysfunction from my hip surgery, but we had to take that off the table with the onset of new symptoms.  I hate being sick and not knowing what is wrong.  That is the worst part.  The not knowing.  And today I just feel like punching walls.  This is not living; this is existing.  It is torture.  I get so upset now when I look at our wedding photos and how happy we were and how much promise there was in our future.  Little did we know what kind of shitty stuff would be around the corner.

I am starting a new job on Monday.  I was so happy when I got offered the job, but I honestly am not looking forward to it at all because I just feel like such shit.  I know it will be good for me, and I know it is better to be out in the workforce and not sitting at home depressed and focusing on how bad I feel.  But I am always terrified that what happened to me with my last job will happen to me again (I was so sick that I could no longer work and they didn't renew my contract).  I don't have the heart to face that again.  I just want this to stop, and it keeps going on and on.........I feel so helpless and out of control and there is absolutely nothing I can do about it other than what I am doing.

I must have been a terrible person in a past life.  I must have horrible karma.  But oh well; I try to remind myself that it could be worse.  That I don't have something deadly.  But I don't know what I have and it's ruining my life and my husband's.  What kind of a life is that?

No Hashimoto's!

I had my six month appointment with my endocrinologist in January.  I had seen him in July on recommendation from my OB/pelvic pain specialist in April.  She had run a million tests on me (pre pelvic pain diagnosis) and found that my thyroglobulin was elevated.  She suggested it might be early stages of Hashimoto's and just told me to go see this doctor.  Like an asshole I forgot to ask him anything about Hashimoto's when I saw him.  I called two weeks after my appointment and they told me the doctor would call me (yeah right).  I had so much else going on that it just got pushed down to the bottom of my list of things I could worry about.  After all, although my thyroid was slightly englarged, all my tests had come back normal and the ultrasound showed nothing abnormal.  He told me to come see him again for a checkup in January.  In the meantime I told my acupuncturist about this and he ran with it.  He told me if I had those antibodies then I had Hashi's, end of story (a lot of his patients have it).  So I started reading up about it and freaking out a little, going on a gluten free diet etc.  For SIX MONTHS I thought I had it.  I was terrified that my stomach problems were being cause by this disease (of which was apparently asymptomatic otherwise) and that I was going to have to deal with this forever.  Well when I saw my endocrinologist I asked him about it and he told me I didn't have it.  I was really shocked and insisted that he pull out the bloodwork I had brought him when I saw him in July.  He told me that 95%--not 100%--but 95% of patients with Hashi's have elevated peroxidase too, which showed normal on the bloodwork I brought him from April as well as the bloodwork he did in July (and now the ones he ran in January as well).  I was so happy I could have danced out of there.  My acupuncturist told me that my endocrinologist is not educated and is old school and that's why he says I don't have Hashi's.

I am going with what my endocrinologist said.  He's got an office at NYU Langone and graduated NYU in the 50's.  I think he has some experience.  Plus he's an ENDOCRINOLOGIST!!!!  

Pelvic Pain Part 3.........the conclusion

Enter GhostMonkey.  Yes, the famed GM.  Of all people, she was the one to point me in the right direction.  I posted about my pain on The Bump, trying to see if anyone else had experienced anything similar.  It turned out that two of the most active, well-loved, snarky and long-standing members of the forum had suffered from her own pelvic pain.  I had never even heard the phrase "pelvic pain" before and was kind of happy to find out that what was happening to me was actually a thing.  GM gave me a link to the Pelvic Pain Society, which provided information on how to find providers in your area.  This is where I finally found the people who would put me on the right path.  (HERE is the link in case you want to check it out for yourself or someone you love.)

I went to see a pelvic floor physical therapist first.  She was amazing.  I loved her website because there was all sorts of information on what to do if your doctor wasn't listening to you or if you couldn't find anyone who would take you seriously or who understood your condition.  She was heaven sent.  She gave me a very thorough examination and was very kind and listened to everything I said.  She said it was not pelvic floor dyfunction, which of course as a physical therapist was mostly what she dealt with.    And then she told me that the best place I could go for this kind of thing was SoHo OBGYN in the City.  I kicked myself for not making the appointment with them when my mom first told me about it.  Since their office was booking three months out, she told me in the meantime to go and see another OB that she worked with who would be sympathetic and might be able to help at least a until then.  I was so happy to finally have someone who got it!!!!

I made my appointment at SoHo OBGYN for March and went to see Dr. A, the one recommended by the PT.  Dr. A was wonderful.  She had a holistic approach to her practice and was very understanding.  She recommended an acupuncturist to me (who was ironically the same guy a friend of mine had been hounding me to go see because he had helped her so much) and told me I should go and see him for my pain.  I knew it was a sign that I was meant to go and see him.  (He ended up becoming a staple in my life.  But we'll hear more about him.)  She told me she would not give up on me and drew my blood to test me for a myriad of things.  In the meantime I made the appointment with the acupuncturist and waited to hear back from her.................except I didn't hear back.  Day after day went by and I heard nothing. I kept calling the office and they kept telling me she would call me and she didn't.  And during that time was when everything came falling down.

I got my period the last week of January.  I was pushing through my days at this point, after four months of debilitating pain and the mindfuck of having no idea what was wrong.  I knew my work was suffering, but I was honestly doing the best I could.  This month though, the shit hit the fan.  During my last period of the day, I was standing in front of a second grade class with my pudendal nerve screaming at me and my whole pelvic floor feeling like it was going to fall out.  I had to pull up a chair and sit down and at that moment I realized I couldn't do it anymore.  I had to take time off.  My principal, although informed about what was happening, was starting to give me shit about missing choir rehearsals for doctor's appointments.  I couldn't continue to try and schedule around work all the time.  I knew I had to take some time off.

I took another sick day the next day and started to put a plan in place.  Dr. A finally called me back and aplogized for not getting back to me sooner and told me all my tests came back normal (big fucking surprise).  I burst into tears and asked her if she would write me medical documentation to get the time off of work.  Thankfully she agreed.  I decided to take off two months and planned to return to work after spring break.

The second day of my medical leave I woke up with the flu and I was in bed for seven days.  Thank goodness I had taken leave.  Things progressed extremely quickly after that  because I had so much time to see the doctors I needed to see.  On recommendation of Dr. A and also the PT made an appointment with a urogynocologist who specialized in pelvic pain and who worked with both of them.  He was actually extremely helpful if for nothing else because while he had a wonderful bedside manner he was not very gentle during the examination.  It was because of this that we were able to find that the pain was mostly radiating from the left side.  He told me that he was going to discuss his findings with the PT.  The PT asked me to come back in to see her again for another more thorough reevaluation.  That was when she discovered that I had pain in my left hip joint.  Did I know I had that?  Yes I did.  But I never, ever thought anything of it.  I always figured I needed to get more exercise or something.  But she told the urogynecologist and they agreed that I should get MRIs done of my left hip, pelvis and lumbar spine.

BOOM.

FINALLY, something came back with "something".  The urogynecologist called me and told me that my hip had a labral tear and that I should consider seeing a hip specialist.  I had no idea why, but I didn't care--they had at least found SOMETHING.  Well wouldn't you know it, by then my appointment at SoHo OBGYN was coming right up.  Enter Dr. Harris.  When I got to my appointment she had all the information there at her fingertips and immediately said she thought it was my hip.  She explained that she had had ballerinas with this injury (everyone I tell that to has a laugh considering I am clumsy as hell and a bull in a china shop--anything but graceful or athletic) whose complaints were similar to mine.  She and her partner in practice had even done a study with a hip specialist at the Hospital for Special Surgery regarding pelvic pain and the hip.  Unbelievable.  I was getting somewhere!

Obviously I made an appointment with the hip doctor as soon as I could.  The day I saw him was like a beautiful dream.  He was so kind and soft spoken.  He told me all about how he had come to do the study with Dr. Harris and that he had helped about 100 people through it.  He looked at my MRI and proceeded to explain to me what was happening.  He said I had bone impingement--the head of my femur was too big for the socket, causing it to slip out and tear the labrum (tissue that holds the femur to the hip).  The head of the femur, hanging out of the socket, was pushing forward and rubbing up against the ilio psoas tendon causing inflammation to the tendon.  This tendon is connected to all the nerves in the pelvic floor, which are now also inflamed and sending pain signals up and down my vaginal canal.

FUCKING BOOM.  AGAIN.

I literally almost hugged him.  I had to force myself not to cry.  It was amazing.  He told me that protocol was that I would have to get a cortizone shot in the tendon first before surgery, the idea being that if I felt better then we would know that was the problem then.  After discussion we agreed that I should not return to work.  I was terrified that if I went back to work (on my feet all day--no classroom, pushing a cart from room to room, traveling between three schools every day) that the pain would return with the intensity it had when I was still working (it had calmed down considerably since I had taken off and was sitting or laying down for most of the day at home).  Plus then I would just have to leave again for surgery.  This was April 3rd and I was scheduled to return to work April 8th.

I got a call from my principal on April 10th, notifying me that my contract was not being renewed for the following year as I was non-tenured.  They made up some crap about my attendance (for medical reasons assholes!!!) but we all know it was my extended medical leave (illegal to let me go for).  That was a huge blow and felt like I was being kicked while I was down, although in retrospect I didn't want to stay at that job anyway.  But to have that on my resume just makes my life that much harder.  Anyway, this is another whole story.

I got the injection.  And wouldn't you know it?  I didn't respond to it at all!  The hip surgeon told me that that happened about 7% of the time (omfg.....) but that he was confident enough in my diagnosis that he wanted to go through with the surgery anyway.  THANK GOODNESS!!

Anyway, to wrap things up I did get surgery on May 31st.  Dr. Harris at SoHo OBGYN saw me through all of it.  She said I could expect to have pain flares for about a year.  I had a huge one with a yeast infection in July that had me in terror and hysterics.  My fucked up flora is what started all this shit--when the tissue gets inflamed from the infection all the nerves get inflamed too.  The yeast infection came from using Pre-Seed, so no more.  I ended up having to get a cortizone injection into my pudendal nerve which calmed things down.  But I never had to do that again.  I had pain flares until October--not as bad as the one in July--but bad enough that they made sex a "thing" still.  But then it stopped.  It just went away and never came back.  I don't freak out about it as much anymore because I feel like I have Dr. Harris and I know that if I really ever need to I can get that injection, but mostly I know now that if flares do happen I can wait it out and it will dissipate.  Every once in a while I can feel it twinge a little, but it doesn't keep me from sex or tampons anymore.

I am grateful for all the knowledge that this nightmare experience has brought me.  I now know how to navigate the medical system and know that I must be my own advocate.  I am now going through another dimension of hell with gastroenterologic issues.  But that's for another post.......