No Surgery!!!

So I went to see a new doctor, a neurologist this time, let's call this one Dr. N.  I asked Freddie to go with me as I was worried that I might not have the guts to ask all the questions that needed to be asked - and I did prepare!  I had a whole list of questions that I found online and wanted to make sure that I didn't miss anything.  I was fairly nervous in the morning and although we got there on time, we still had to wait 30 minutes, but when Dr. N. came in, it was clear that he had read my file thoroughly.

The long and short of it is that there are significant problems, but due to the multiple discs involved, Dr. N. didn't feel that this would be an easy surgery.  Dr. N. also indicated that in a recent research study it was noted that 4 years post surgery, there was no difference in satisfaction or pain level between those that had surgery and those that didn't.  Dr. N. felt that in my case, we'd need to repeat the surgery in 4 years if we chose to do it now.

So I'm happy that I don't have to endure the pain of surgery or risk making my problems even worse, but at the same time I'm also sad as I had hoped that perhaps there was a way to end this constant pain.  My emotions are mixed right now and it will take a bit of time for me to totally absorb this news.

When it rains, it pours, it thunders, its windy and lightning is all around

Sorry folks, I was so desperately hoping that my posts would start getting cheerier, but I just can't seem to catch a break this year.  The more info I learn, the more it seems that the odds are stacked against me.  


I've been so totally upset since the weekend.  I've noticed that lately when I get upset, its just not just anger, but my stomach goes into knots for days, my body shakes and I'm almost scared of opening up email or answering the phone, for fear of getting upset even more.


First off, the weekend started with getting invited to a family dinner for my aunt's birthday, who is celebrating a milestone today.  Honestly, I didn't want to go as I'm still upset that she hasn't acknowledged our little angel. Now, I have forgiven her for it in my heart, as I can't change what she did or didn't do, but forgetting, that's the harder part.   But I agreed that I'd go, put on a good face and do the "right" thing.  This was going to be even more complicated by the fact that Freddie wouldn't be coming as he would still be at work, so I'd be facing this situation on my own.


The next day, I was faced with a really difficult situation, where someone in my family, who I thought I could trust, posted some very personal information regarding my family, including speculation on my mom's paternity.  Both my mom and I were so upset to have this nim-wit post our personal info on a public site. I can't tell you how livid I was!  I decided that there was no way that I could now attend a family dinner, as I could not be in the same room with this person.  The course of emotions that ran through me and continues is indescribable.  To feel so completely violated and lose trust feels so lonely.  I feel like my entire body is vibrating.


On Monday, I told you I was going to see Dr. P.  I had honestly believed that Dr. P would say we're doing the right things, maybe give me a new script and that's it. Instead, I received a new label to add to my repertoire - apparently, I've been suffering for a while from this:


I couldn't believe that Fibromyalgia was now a part of my life.  What is it you ask?  It seems to be a relatively new chronic pain illness which includes stiffness and widespread pain which may "move" from one area to another and can affect various body parts.  Fibro is also associated with IBS, GERD, chronic headaches, extreme fatigue and sleep disturbances.  The condition can be aggravated by stress...but I can't seem to get away from it!  A clearer definition is found here:  http://www.pdhealth.mil/deployments/downloads/fibromyalgia.pdf

This definitely fits how I've been feeling lately, but its still so scary to me.  Although you know I've been petrified of surgery, at least there was hope that with back/neck problems, surgery could possibly alleviate them, but now I have a disease which has no cure, only medication to control the symptoms.  I cried in Dr. P's office - I was not expecting THIS!  I called Freddie on the phone and cried again.  


The image on the right shows the "catch 22" that is now my life.  If I overdo any of these items, it throws the cycle out of balance - and only when it's in balance can I manage my day.  This balance is so tricky and so hard to maintain!  


By the time I got home, I was trying to calm down.  I have not changed, my condition has not changed, I just have a new "label", a new name to describe my condition.  Regardless of how many time I tell myself this, I still can't get used to the idea that is not curable, that I'll always feel like this.  Dr. P also felt that there was no use for back surgery as it would not affect the constant pain I feel as a result of the fibro.  I just need some time to get used to this - when I was diagnosed with my back problems, I went through all the stages of grief and I suspect I'll have to do this again.  


On Tuesday, I went to see Dr. F to figure out next steps.  Freddie didn't come with me, as I figured that Dr. F would give me a drug of some kind to help me ovulate and we'd be trying again this month.  Within minutes, Dr. F was saying that drugs wouldn't work as he felt I was in fact ovulating (by looking at various pieces of info, including my BBT charts), and that we should be looking at injectable meds and IUI.  WHAT???   I had no idea we'd even have this discussion.


Freddie and I had never really talked about assisted reproductive technologies.  We never thought we'd be talking about IUI or IVF.  We never thought we'd be one of "those" couples!  I mean this is something that every living creature can do, so why can't we??  My head is still swimming just thinking about it.  I wonder if we really need to think about IUI or if Dr. F just wants us to do a treatment for which we have to pay.  How many IUI's would we do?  I don't know.  Would we go to IVF if IUI doesn't work? I don't know.  At the start of this blog I said that I didn't agree with IVF and that based on my Christian values, I'd never do IVF as I could never flush embryos down the drain, but now, I don't know.  Would we actually consider IVF?  I think that if we did, I'd end up as the next Kate Gosselin with 6 or 8 kids.  There is so much I just don't know!!!  Freddie and I need to sit down one of these days, watch the Fertility video that I was given, and then have a conversation about how far we're willing to go.


My head hurts, my stomach is in knots and I feel like I'm drowning in info.  The bad news just keeps coming, and coming, and coming.

Feast of the Holy Innocents

How fitting that I get back to blogging on the Feast of the Holy Innocents.  I've started looking at some devotionals and daily prayers on line - this is one of the ones that I like:  http://www.americancatholic.org/Features/SaintofDay/


Christmas went better than expected.  On Christmas Eve, we had a really nice dinner at my mom's, and the family behaved themselves for the most part.  My aunt was reasonably tolerable - I must let you know that recently I have not gotten along with this woman. She prides herself on being the etiquette expert and never fails to tell any of us what to do or how to do it, and when we get annoyed with her, she plays the "respect your elders" card.  She also prides herself on being a devout Catholic and standing up for the Church's teachings. I've been upset with her because when our angel left, she never said a word to us about it or even acknowledged our child's life. As a "good Catholic", you'd think that she would recognize that our baby was a real entity and child of God from conception, but instead silence. My mom, on the other hand, was really touched when she opened up her gift and among them was a small ornament to commemorate our sweet angel.  Her eyes welled up and I was really touched.  She hung the ornament promptly and I was happy to see this gesture.


The next day, we went to my in-laws and it was fairly pleasant too. I must admit that I was really bored at the start and frankly a little annoyed when all the 'tweens' pulled out their phones and proceeded to play and/or text, ignoring those of us in the room.  I am always annoyed by the fact that on my in-law's side, there is no distinction between Christmas and any other day.  The kids were either in jeans and t-shirts, or in jogging pants. Nothing was particularly clean or pressed. Freddie's dad did impress this year - he left his jogging pants and put on "real" pants this year, so that was nice. But the rest of the clan was dressed like any other day and this bugs me, as in my house, Christmas is one of the most important holidays, next to Easter, and everyone is dressed for dinner and the festivities.


Freddie's dad was also in a funky mood and at one point and came down and shared with us that my mother in law had had a biopsy on a growth on her leg and it came back cancerous, but they are certain that they cut it all out and she is healthy and apparently cancer free.  She will be monitored for the next while.  So he tells us this as we are sitting on the couch, one of the adults is sleeping on the next couch over and the kids are playing games on the floor. Now Freddie's dad is notorious for lacking the ability to keep a secret, so I'm not sure if this was news that he was supposed to share or if he simply spilled the beans as always. So naturally this spoiled the dinner for Freddie and I as we were totally worried, but couldn't even say anything as we weren't sure if we were supposed to know.  Oh, so stressful!


I've been praying every single day for our angel and to our angel that our angel will intercede on our behalf and ask God for another baby.  Freddie and I are really working hard at another baby and sometimes I worry that I'm going to wear the poor guy out!  On the bright side,  I've had some cramping, I've had one instance of some mild pink spotting if you will, and so I'm so hopeful that this will be our Christmas miracle.  I'm just worried that we might be disappointed again.  


So far, the break has been really nice with Freddie.  I feel that we are really close and on the same page.  Although I'll never forget our sweet baby, I don't cry and seem as sad as before, so I know that Freddie isn't as worried as before.  That doesn't mean that I'm magically better, but its just nice to have him from work and with me during the day, which definitely keeps my spirits up.


I've got a few medical appointments coming up, including seeing a surgeon to figure out next steps.  I started preparing for the appointment by reading up some info and making a list of questions I should be asking.  The more I read, the more scared I get of the surgery.  In fact, I'm TERRIFIED of surgery. I've never had surgery before. I'm not only scared of the increased pain, but I'm deathly afraid that it might make things worse.  What if I end up in more pain? What if I end up in worse shape? Or worse still, in a wheelchair?  If this was a life or death issue and I had not choice but to do surgery, then it would be easier.  The choice terrifies me - and then what if I decide that surgery is too risky but my disability insurer disagrees?  Can they force me to have surgery?  I just feel so scared right now!!!  We desperately want a baby and with my age, this is the best time for us, we shouldn't wait. If by some miracle we got pregnant this month, then that would give me more time to figure out what my options are, maybe see another surgeon, or simply postpone the surgery...


I'm ready and positively thrilled at just the thought that perhaps God would grace our lives with another child, but the thought of surgery and the possibly life-altering after effects simply terrify me.  I just feel scared.

What next???

I've been pondering, since I'm at home with a lot of time to think...maybe too much... but I've been pondering, what is our next move?  Should we start trying for another baby right away? Should we wait?

I read the recent study which indicated that there is no need to wait 6 months post miscarriage to have another baby. In fact, it seems that women who conceive within 6-months have a lower rate of miscarrying again. This is very encouraging, especially for someone like me, who is "age challenged".

At my age, and with the possibility of a fairly serious surgery in the future, we can't really wait. I'm seeing a specialist in the New Year and I hope that they will offer me a surgical option...I figure that with the wait time, I'll have approximately 9-12 months prior to surgery.  If I wait post surgery to think about getting pregnant, I'll be in my late 30's and that could be too late...so we're between a rock and a hard place. We can't afford IVF [and I don't agree with it on moral grounds...the disposal of embryos part], we won't be able to afford adoption either, as that gets expensive soon.  

This "next steps" thought process actually makes me upset sometimes.  Last weekend seemed particularly difficult...it started one evening when Freddie went out with his friends for beers and I stayed home. I was annoyed that my friends hadn't called to get together or drop by to see me...and I was in a fair bit of pain...and the mind starts to wander.  There is no doubt in my mind that no future child will replace our angel, and not a day goes by that I don't think and pray for our baby - but we also want to have a family.  Physically, we got the green light right away...but honestly, I don't think we'll ever be 100% emotionally ready, knowing the risks and knowing the heartache of losing a child. We both fully realize that the next pregnancy will not be the same - it won't be happy, but rather scary and nerve racking all the way...I don't think any amount of counselling can change that, but time is not on our side, so I guess the decision has been made for us.

When our angel left, we did use a unisex name, and openly use it at home - I hope you don't mind, if for the purposes of the blog, I simply refer to our baby as our Angel.  I know that if we are blessed to have another baby, we would not name any future children with our angel's name.  Our sweet angel was very unique, a one of a kind child, and I think that each child is individual and special...and deserves his/her own name.  So should we get far enough along to pick names, we would definitely pick an alternate one.  We didn't buy anything this time around, as I had just begun to show... but we had looked at some items on a US shopping trip and had started planning the nursery...we just never got to act on it.  I don't know what I'll want the second time around, I guess it will depend on how I feel.  All I know for sure is that if people ask [which they will] if this is our first, I will definitely say that its our second child.

Down in the dumps!

I seem to have entered the dumps and can't quite seem to drag myself back  to the top. It just feels like everything is out of control.  I'm praying that surgery will be able to help me get my life back. I just feel so worthless and useless right now. My self-esteeem and self-worth are hitting rock bottom. I still get out and try to do as much as I can, but I just don't feel worthy or deserving of anything at the moment. My husband is being amazing, but even my mom mentioned that he didn't sign up for all of this. We are getting along well and there are no problems, but I have this gnawing thought that has been bugging me lately - when is he going to say "enough" and move on? This is so totally irrational as I don't think its going to happen, but its my greatest fear. Due to my illness, we don't do much, we don't go out, I don't even laugh as much as I used to...my body is failing me in so many areas. I don't contribute to the household as much as I used to, financially or with work. My career prospects are dim at the moment...everything is out of control.

Anyway, back to the topic at hand...the memorial service was actually very nice. It was a cold and rainy day and it turned out that the service was private. I thought it was going to be part of the regular daily mass, but it turned out that that particular church didn't have a mass and that my friend, the priest, presided over a mass just for us. My inlaws came and my mom did too. We got flowers from all of them for our 3rd wedding anniversary which was the same day. It was really nice to have our sweet angel acknowledged publicly. It was just us in a large quiet church. It was so somber and fitting.  I did wonder if perhaps we should have invited the rest of the family, but on the flip side, I didn't want that fake pleasantry or the fake support. I had hoped that my friend might have done something a little more special, like maybe get us a candle or a medallion for our baby, but he's a typical guy and didn't think of it...that's OK. So the service was just a regular mass with a few blessings and the main intention was for our angel's eternal rest and to thank God for blessing us with this baby in the first place.  I did write a letter to our sweet baby on Oct 15th...and I cried throughout the whole thing. All those dreams and hopes ...dashed. 

Thanksgiving was OK. Support? Ha!  Dinner at my in-laws went OK. One of my brothers in law, about halfway through dinner, mentioned that he was sorry to hear about our loss [2 months later...a little late, eh?] and are we going to try again. Wow, talk about jumping from one thing to the next and invading our privacy! He hasn't spoken to us in months and then asks us about our private family plans...I was glad that Freddie answered him, as I could feel the tears welling up and my throat getting tight. That was it...no further mention.  Then, when we all disclosed what we were thankful for this year, I was honest, I said that I was thankful that despite this difficult time, I was thankful that things weren't worse - I'm chronically ill, I'm worried that I may not have a job to go back to, we lost our baby, and both my husband and I were lucky that I didn't lose my life or our ability to have kids in the future...and the brother in law made a snide remark that that was a silly thing to be thankful for and I wasn't taking it seriously. Walk a mile in our shoes buddy before you talk...we all know too well how insensitive people are ...wish I could say that these remarks get easier to handle, but they just don't :-(    


Then we had dinner with my family on the Monday, and my dear aunt/godmother, the one who hasn't said a word to us (and its hurtful as our family is very close, or so I thought, and she claims to be the proper etiquette expert and never fails to point our anyone else's errors, yet she can't see that the 'proper' thing would be to at least send a card...). I went over to hug her hello and she said, "Oh don't bother bending down"...she could have stood up to say hello. So I took that to mean "don't really bother". She didn't say a word to either of us all day and at the end, she said goodbye to everyone else except us. She was leaving so I went to the door to say goodbye to my grandmother who was going with her, and she just waved as she walked out the door...but had hugged and said a proper goodbye to everyone else. In a way I'm glad that she didn't say anything, as I think that no matter what she would have said, I'd be mad at her. It just makes family get togethers really odd...I guess I can do the polite thing and respect my elders, but know that deep down she's just hurtful and never count on her support again.

My husbands siblings have also chosen to ignore us. My closest friends have also stayed away. My two friends who lost babies have also stayed away. I met up once, with my friend who lost a baby 16 years ago, and that was it. I think that she also thinks I need to suck it up and move on. My other friend has a little girl, but has lost 3 babies over the last 5 years...I think that perhaps talking to me just opens up wounds and that is why she's avoiding me and my emails...that's what I think as I don't really know.  I'm just so disappointed that at tough times like these, we're supposed to be able to count on friends and family...and I sadly realize that I can't count on one or the other. We did, however, get a sympathy card from my husbands great-aunt. She didn't write much, but that simple gesture meant so much...oddly, we see her about once every 2 years, and she felt compelled to send a note...it was really nice.

I did write a letter to my mother-in-law, and I didn't lambaste her for being insensitive, but I just explained how hard this was for us, how supportive her son has been and how overworked he is [aka stop asking him to do stuff for you, he has his own worries]. I also said that our angel brought us closer together and that I was planning on calling them "mom" and "dad"...she seemed to get it a bit after that and there have been no more insensitive comments. I think that maybe she realized that we were more affected by this than she thought...Freddie tends to put up the 'we're fine" face, and I think they need to know that we're not fine. They did display our angel's ultrasound at Thanksgiving... 

We've started trying again. I finally got my period a couple of weeks ago...I was getting worried as it was almost 9 weeks for it to arrive. It took us so long to get pregnant last time [over a year and a half], that I don't feel like we have time to wait. We're both in our mid-30's, so for me, I don't have much time before the infertility gets worse. I really feel like its now or never. I want another baby, as we both want a family, but I don't want that to overshadow our angel. I don't know if I'm emotionally ready, there is so much going on with me in terms of medical stuff, not working...it would give me something to focus on...I just don't know. I figure that God will decide if its right or not...I'm not sure how I'll feel...I don't know if we're even going to be lucky enough to have a baby again....

Another aspect is that it seems that Freddie has moved on and I'm left in the dumps alone.  It  helps Freddie that he goes to work and has to return to a normal life, while I stay at home and wallow in my grief. I don't even know if its grief or just frustration at my entire "life" situation right now. I'm seriously thinking that if this funk doesn't change soon, maybe I do need to go talk with a counsellor...my fears are starting to get the better of me.  I don't want to only talk, I'd like to get some advice and strategies to use...I just feel so lost right now. I thought I was doing well and things were getting better, and then suddenly I feel like crap all over again...hormones perhaps? Oh I don't know..I'm just all over the map right now...  I wish I could go away on vacation somewhere and regroup.  I seem to wish for so much lately....

Here I go again...

I started this blog over the summer and chose the title you see above, with the "Constantly in  Pain" url.  Little did I know how prophetic that title would be in all areas of my life for the next few months. This blog sat for a long time as I tried to sort out my feeling and emotions about what was going on and could look back on all my experiences and share them with others, which for the record, isn't as easy as it sounds.


I write this with mixed feelings. I'm happy to be venturing into the world of blogging, but I'm also not sure that I'm ready to pour my guts out completely online. Over the last few months, I've read many blogs by other women who also have lost a baby, and I can't help but wonder what's so special about me? I already journal privately, so why start blogging? Why would anyone want to ready my story? What makes it more compelling that any other? Then I arrived at the answer: my situation is unique, my story is unique, and even if it helps one family, it means its all worth it.

So let me backtrack a little bit. At the age of 29, I was diagnosed with a chronic back problem, which began my journey of chronic pain. Needless to say, I was shocked and surprised to receive this diagnosis - now I do have a parent with a back problem, but somehow I thought I'd be in my 60's when it would hit me, I just never thought it would be ME...and at 29!!! I was single at the time, working and supporting myself, and I felt like my entire world had come crashing down. The next few years were spent dealing with this news (and yes, I had gone through all the stages of grief in order to accept the "new me"). It took a long time to find the correct mix of drugs, and I had also tried physio, aqua therapy, acupuncture, TENS, epidurals, cortisone, nerve blocks, etc. You name, I tried it! Finally, things got manageable!

Over the next few years, I plowed ahead, built up my side of the business for our company, met Freddie and then married him, moved into a new home and started "living" life. Things were finally going well...finally! I had worked so hard to get here and I was so happy! But we all know that happiness and good times don't last, and this year things started to change...

After a year of marriage, Freddie and I decided that we wanted to start a family and promptly "got to work". Fun times, quickly turned to disappointment. After more than a year of trying, we finally decided to visit the local Fertility Clinic to get checked out. We went through all the standard testing and were called to come for the results, but we had some news of our own to share :-) At the appointment, we found out that there was nothing wrong with either one of us and that all the results were normal - and we shared that we were pregnant!! We quickly got blood work done to confirm the news and the following week we had our 6w2d ultrasound. Seeing our baby on the screen with a fluttering heartbeat was amazing! We were so incredibly happy, we were finally going to have a family.

Now, for about a year prior to this, my chronic back pain was increasing and increasing. My business was growing and succeeding, and so my company demanded longer and longer hours, and I obliged - I mean, we all know what the job market out there is like. Finally, things came to a head and I could barely walk. The next set of MRI's revealed multiple herniated discs in my lower back and one herniated disc in my neck. The problem is that the discs in the lower back are all herniated in various directions, which makes it problematic for diagnosing which disc needs to be replaced with an artificial disc or a full/partial fusion. Over the next few months my work hours had to be reduced and finally I had to stop working all together as I was unable to sit/stand/walk etc. My pain meds were more than doubled to simply take the "edge" off. I went back to physio [not that it helped much] and am now on disability from work and waiting to see a surgeon in order to determine if there is a surgical option for me.

The pain is constant, sometimes stronger and sometimes less, but it's always there. I have a hard time walking or even shopping, and all tasks at home take me much longer to complete. Due to the amount of pain meds I take, I also have a slowed digestive system which causes constant headaches, nausea and vomiting. I've lost about 20lbs in the last 4 months. I just feel miserable most of the time, but while pregnant, I honestly didn't mind the nausea.

One day, out of the blue, I started to bleed and we soon realized that we were miscarrying. I think I'll save that story for another post...until then,