I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Dont even try to tell me there’s nothing else because I refuse to believe that….

So, I feel somewhat calmer today since yesterdays 5 week post-op Surgeon appointment. I wanted to write last night more than I have ever wanted to write but I knew I couldn’t… I was too angry, to tired, to scared and way to emotional to write about what has consumed my life in every sense of the word…MESH

I have had a feeling for the last 2 weeks the apt would not go well…it stopped me from sleeping at night and when I did sleep it terrorized me with “Night Terrors” and penetrated my body with the raths of panic attacks…it made my mind go crazy during the day and crazy at night. I have been running or trying to run from the mesh now for months and months and I can’t escape it because the mesh has become me or I have become it…I’m not saying it defines me as a person but it does shape and mold my life right now with endless medical appts, new specialists, tests, pills, and fear. When will it ever end, I’m not sure it will and that is not me being pessimistic it is an unfortunate statistical  fact.

I have been advocating and educating for the past few months trying to get the word out about mesh…I have been lecturing women on the dangers and simply asking them to read the different BLOGS out there on the complications of mesh, I have told them to make sure they are INFORMED about MESH BEFORE they elect to have it done. I have never told a person NOT to have the surgery, I have just asked them to do their homework and research and then after all of that, if they choose to go ahead, I know that I done all that I could.

My main concerns going into the apt were basically, “what if there is nothing else” and that is exactly what happened. I was nervous about the drive to the office as it was out of my comfort zone when it comes to driving but I knew I had to just take the bull by the horns and run with it…I’m a big girl now so act like one…that was my thought the whole way there! I ended up being about 2 hours early but funny enough, there is a shopping mall right across the street from my Surgeons office, how freaking convenient is that!!! I decided I would check it out although I knew I would pay for it later as walking is very difficult when you are in pain but I was determined and it paid off, I came out with 4 beautiful skirts!!! Didn’t even try them on, no time for that and anyway the sales lady assured me they were “one size fits all”…I can’t for the life of me figure out how that works but I didn’t care, I bought them anyways, they are pretty and will cheer me up on my yucky days.

So its time to head over to my Surgeons office, butterfly’s in my stomach, a nerve rash on my chest and on the verge of a full-blown panic attack…breath Diane, breath…The Doctor came in and asked how things are, now THAT’S a loaded question! …I tell him all about the problems I am experiencing and he seems surprised and said something to the effect of, “well we had hoped for better than that”. Ya think!!! He asks me whats been happening and I tell him and he  really didn’t say much at the time, there was an odd silence in the room and I didn’t like it one bit. He commented that I was healing well but to still be careful as I am only 5 weeks post op.

I, at this point,  decided it was time to ask my questions and challenge his answers if necessary. You have no idea how much I hate confrontation but when you have been physically and emotionally challenged by MESH, you’ve already lost most of your dignity and ALL of your pride. First question, how much did you get out, he told me the amount and then I challenged him with this question, “So, if the mesh is say 6cm in length (this is purely a guess on my part so don’t take it for anything more than that, I truly don’t know the size of the Mesh device I had implanted) and you got out say 3cm, where is the other 3cm”? Does that not seem like a logical question? I thought it did but I knew the second the question left my mouth and was out there, there was an icy cold feeling in the room. Dr asked me to clarify question, raised eyebrow and a somewhat discerning look on his face which I took to mean, “how dare you challenge me”. Oh well! Shit happens! He said something to the effect of, (and don’t quote me on this) well it is embedded or become apart of your muscles and tissues”. Oh really! So how do we get it out…we dont. Huh? WTF? Why not? he says he did not get the mesh from the Obturator Foramen and will not go back in to get it from there as it is to dangerous, too many blood vessels. It will always be there and will eventually degrade into the surrounding tissue. Ok, this conversation is not going in the direction I wanted it to go. To be clear I said, “So this is it, you removed what you VISIBLY saw but you will not look for more”? and the answer was, “Yes, that’s right, I will not look for it and I will not attempt to get it from the Obturator, I am not skilled enough to attempt that”.  It’s out there now, the one thing I feared the most was just said out loud and not out of my mouth but from the one person I never wanted to hear it from, my surgeon.  

I sat there, mouth open, thoughts scrambled, not sure what to do next…I think I said something to the effect of, “So now what”? My surgeon said he is pretty sure I have nerve damage causing the extreme pain so he has sent a letter to my Dr stating we need to get on board with “pain management” now. Are you saying I need to be on NARCOTICS now? Yes…Oh, but I’m not sure that’s what I want…well, it you want the pain to subside this is what you need to do…hmmmm…not sure what to do with this tidbit of info…I’ve parked it somewhere in the recess’ of my brain for ow to be retrieved at a later date.

So what about the reconstruction surgery we had talked about doing seen as my original problem is now worse than before the THREE bladder surgeries…Surgeon says to me, “we will re-visit that issue in the fall”. It was very apparent at this point that he was finished with the conversation and I was being dismissed. Well, I was not done yet and I sat in that chair and made it very clear I wanted more answers, I was not going to be dismissed until I felt ALL my questions were answered, to my satisfaction. Bottom line is at this point there is nothing more he can do for me other than offer drugs and when the Mesh does migrate again, then we will go back in and take it out. Oh, you think you will huh…well I think MY plans are different, in fact I am DAMN sure they are.

I think back to the day this all started, Dec 2009, and wish I had researched my options more. I am the first person to always say I don’t live with regrets, everything is a “life lesson” and now I had to eat my own words because the MESH WAS and will always be a huge regret in my life. Yes, I can help other women, I can advocate and educate until the cows come home but it will never give me back what I so dearly want, my life, pre-surgery.

I went from having a “routine” operation to a life that is like a maze, you just keep going around in circles never quite knowing where the end is or if there is an end. I feel like I am chasing the elusive “pot of gold” at the end of the rainbow and yet it is not the gold I want, it is just my pre-mesh life.

Do I give up, HELL NO!!!! I am too damn stubborn for that…that is one of my most endearing qualities about myself that I pride myself on, you can knock me down, kick me to the curb,  stomp on me but you will never stop me from fighting, from digging deeper into my soul to *fix* this. That is just who I am and I am more stubborn now than ever before because I have my beautiful Lily to chase around and laugh and play with. Lily is my reason for getting up every morning and fighting through the day, I love her so much and she is such a shinning bright star in my life.

 Am I still mad, you bet I am and interestingly enough it is when I am this outraged that I do my best work! I have already started looking for “new” options…this is not the end, I refuse to live the rest of my life like this, I will not be discarded and tossed aside. I just need to get my wits about me after that apt and then I know I will start researching whats available to me. It will take time and I will get frustrated, angry, sad, tired, but for each of those moments I will look at Lils picture on my table and know that I have to find a way to fight through this so I can be apart of her life as the hands on Nana I have always envisioned I would be and I WILL be that Nana, mark my words….

Out with the MESH Diane and in with the new Diane!

 

 

 

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Oh my, what a MESH of a day…

I couldn’t decide whether this is a “MESH BLOG” or a “Turning Over a New Leaf after 50″ BLOG!!! It’s a little bit of both so I think the proper thing to do is post it under both! Hmmm…I could even start a NEW BLOG entitled, I’m a Mesh over 50”!!! Maybe not, 3 BLOGS and writing a book is about all I can handle right now!

One thing about me that any one of my family or friends knows is that I am fiercely independent and have a knack for biting off more than I can chew! I proved that theory right today!

I needed some groceries and although various people have offered to do it for me, I feel bad asking for one and secondly I am going to go crazy in this damn house soon, so off I go to the market…how bad can it be….

I didn’t park in “Handicapped” parking today after yesterdays fiasco but I did manage to snag a front row spot or I would have hit the old handicapped again! I waltzed into the store with my “little” shopping list, with James gone I tell myself I don’t need that many groceries…that theory was also shot to hell, $123,00 later I am up to my eyeballs in bags!

 There is an elderly couple behind me both with their walkers, it was actually quite cute until the wife says to her husband, ” why does SHE need help out to her car, she’s young” the husband mutters something about me being sick (good for him he was defending me) but his wife would have no part of that explanation and groaned rather loudly…I had told the cashier I couldn’t lift the bags so she said someone would help me out with them, done deal! Apparently the elderly couple had their hearing aids turned down for that part of the conversation or was it just selective hearing? Hmm…one does have to wonder…

I contemplated turning around and saying something to them but I just couldn’t put what little energy I had left into them so I left with my groceries being wheeled out by the gentleman helping me…I could get used to this service…

Next problem I didn’t quite think through properly was how the heck I was going to get this stuff in my house and up 13 stairs! Ok don’t panic Diane, my neighbor is home and she has offered help any time I need it…I knock on her door and ask if she minds helping me, not a problem she replies…ok now, picture this, BOTH my knees are bummed and ONE of hers is bummed! So you can imagine the hysterical laughs we were having as we were each taking one bag at a time one stair at a time! We looked at each and just shook our heads…It took us a good 15 minutes of shuffling bags one stair at a time but we got the job done! YAY! My neighbor did spot the chocolate bar in one of my bags though  and grabbed it pretty darn fast! She laughed and said, “Hey, if I’m gonna be in pain helping you with your groceries, the least you can do is give me your damn chocolate bar! Geesshhh, didn’t see that one coming! I was looking forward to it! Oh well, better for her to have another dimple on her ass than me… 🙂

Groceries are away and now I am on to solving the problem of my voicemail password that I haven’t used in probably 2 years! No one calls me, they text and that’s how I roll!!!! One piece of advice I can give is: NEVER LOOSE YOUR VOICEMAIL PASSWORD! I have spent the better part of the past hour being shuffled around to different departments only to find that the temporary password they gave me doesn’t work! I call back and report this and I am told that there will be a $5.00 fee for them to reset it! WTF!!! If the password YOU gave me doesn’t work, how is this MY fault! I just ripped someone a new asshole, (sorry for being this descriptive but this is one of James’ favorite sayings when he is mad and I feel I have earned the right to use it as I am that mad today! ) the poor guy but honestly I am tired of being walked all over! I learned I could go on-line and do it myself which is exactly what I did! Gawd I’m good some days…doesn’t happen often so I take it and run with it when it does….

So in between all of this happening, I get a phone call from the Hospital I had my surgery at. Prior to my surgery, a “specimen kit” was sent to the hospital so that once the mesh was removed it gets put into the kit and sent for pathology. So the hospital calls ME and says I didn’t sign a consent form for this to happen! I freak out on the lady as I don’t believe I am supposed to be involved in all of this technical mumble jumble stuff! I fire off and email to my Lawyer and thankfully he responds right away stating he will take care of it tomorrow…phfewwwww…another disaster diverted…I was having a mild heart attack!!!

Remember how yesterday I said there are days you just sit down,  shake your head and say WTF, well today was another one of them!

I think the rest of the evening is going to be spent laying flat-out on my couch exhausted from the days activities! Everyday I try to push my limitations and everyday my body lets me know it aint gonna happen, yet… 

“A journey of a thousand miles begins with one single step”

“I choose….. to live by choice, not by chance. To make changes, not excuses. To be motivated, not manipulated. To be useful, not used. To excel, not compete. I choose self-esteem, not self pity. I choose to listen to my inner voice, not the random opinions of others. I choose to be happy rather than sad. I choose to not have regrets but rather learn from my mistakes. I choose to be a lover not a fighter. I choose to live my life like there will be no tomorrow.”

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And the MESH goes on and on….sigh…

Well, today was one of the most interesting days that I’ve had in a long time! Do you ever sit down at the end of a long day, shake your head and think, WTF???!!! Well, that was my day!

It started out good, I had a good nights sleep despite the heat and the usual mesh pain in my right buttock that starts the minute I get into bed. I awoke reasonably refreshed and with the sun shining how could it not be a glorious day! Ok, so I had only been awake for 15 minutes but I felt charged and ready to take on the day…the first time since surgery June 21…things are looking up, or so I thought…

Up until today, I had only been out of the house once since surgery and it did not go well…so when I contemplated running a few errands and going to the Dr, I thought how bad could it be?? Isnt it funny how the plans we make for ourselves are often not apart of the “big” plan from higher up? But I was willing to put that to the test today…

I’m headed to the Mall to return some stuff and we all know that when you return something, you HAVE to buy something else to take its place! Is there not a written law somewhere on this and if not, then there SHOULD be!!! It makes your new purchase feel like its “free”!!!! I know only a woman could rationalize this thought and even tested my theory with James this evening and he just laughed and said, “If that makes you feel better about spending money on stuff you don’t need, then I have nothing to add to that thought, sunshine.” hmmm….that didnt go as planned!

So, my knees are killing me (just from the drive there) and my insides feel like they are about to drop out ( bladder surgery has a way of making you walk in a completely different way often compromising my neck and lower back) when I see a “wheelchair” only spot and feel slightly guilty about pulling into it…but my knees beg me to make this trip as painless as possible so I pull in. I am no sooner out of the car when this “woman” approaches me with “Excuse me Miss, but that is a handicapped parking spot and I don’t see a sticker on your windshield”…Are you freaking kidding me? Who the hell are you, the Handicap Sticker parking police???? I look her straight in the eye and say, “I know I don’t have a sticker and normally I would not park in a designated spot however, I just had surgery 2+ weeks ago and both my knees are shot from Osteo Arthritis, and she has the nerve to say to me, ‘Well, that may well be but these spots are for people with a disabilty”…Ok, what part of my story did you NOT understand!!! And look at you, you chipper maybe 21yr old big boobed, blonde 80lb anorexic bombshell, havent you got better things to do than harass a 51 yr old crippled up woman???? Go find some stinking rich sugar Daddy and leave me and my handicapped parking alone!

She mumbled something to the tune of, “Stupid b*tch” and walked off! Lets just say she is damn lucky I am crippled up because if I could have got my hands on her, I would have smacked the fake sunburned wrinkled up tan off of her face!!! Instead I got all huffy and tried to just get in the Mall as fast as I could which with my knees is not an easy feat…I was trying to look all cool and walk with a swagger so as not to draw too much attention all the while wanting to just get back in my car and go home, BUT I was not going to let this little glitch ruin my day!

I’m in the mall returning my stuff and purchasing new stuff when I hear, “Diane, is that really you”? I turn around and see someone I had hoped to never lay eyes on again in this life time! Politely I said hello and yes, it is really me…your probably wondering what the big deal is, well, it was someone I dated the year before I met James and things did not end well…so now this person wants to be best friends, I don’t think so…actually I know damn well THAT will NEVER happen in this lifetime…Lets just say that today I got to say all the things I wanted to say to this person 6+ yrs ago and it felt FANTASTIC!!!! There’s something about verbal diarrhea that really feels good sometimes!

So, I am trying to buy a baby gift for my niece when it becomes painfully obvious that I am not going to be able to accomplish this misson…my knees were killing me and my bladder was screaming “get off your damn feet and find me a couch”!!! I’m texting my daughter madly during all of this taking pictures of prospective gifts when I finally acknowledge the fact this is just not going to happen today. I was beyond irritated, I was damn mad…I used to be able to shop for hours on end, have a coffee and muffin and continue on for more hours…now I am lucky if I can shop for maybe 30 minutes and that’s a good day…I give in to the pain and drive home….and yes, I did have a little cry on the way home.

I stop and get my Timmy’s coffee and feel much better once I have had my first sip…there’s something about Timmy’s that makes me just smile and feel warm all over…I know, weird. I get home and then the fun begins…now I have to figure out how I am going to haul all my stuff into my house and up 26 stairs! I have got it down pretty darn good over the past few months, I put the bags on the stairs and literally do one stair at a time over a period of however long it takes me to make it to the first floor, 13 stairs away…it could be 20 minutes or 2 hours and then anything that needs to go to the top floor is another 13 stairs so I start the whole process all over again…It can literally take me a whole day to eventually get everything into its proper spot…if something lands on the wrong floor, to bad…I’ve had freezer stuff end up in my upstairs bathroom by mistake and by the time I get it to the right floor, it is usually thawed out and not good…sigh….

I’m home and stuff is put away as best can be when I check my answering machine only to find that my “coffee” person has left FOUR messages!!!! I am very pissed off and let him know that if he calls me again, he will have to deal with my RCMP daughter-in-law! No more phones calls so far!

It’s late afternoon when I hear a knock on the front door, Gawd, down 13 stairs again…I am met by a very angry neighbor who was given something by a person we both dated…I bought it for him and he re-gifted to her and she found out and threw it in my face! WTF moment for sure! Didnt see that one coming! lol I slam the door and hike it back up 13 stairs and proceed to chuck out the re-gift!

I am more than tired at this point in the day and decide I am going to lay on my bed and listen to a meditation CD…I so need to slow down my breathing and calm my mind.  Theres nothing more enjoyable to me than listening to the sounds of the ocean with the Orca’s and Dolphins singing away…I obviously needed this break as I fell asleep for an hour! I felt refreshed and rejuvenated when I awoke.

There are days that mesh feels like the only reality I know right now..its those days I have to remind myself that I have many many wonderful people in my life and I am grateful and blessed and should never take that or them for granted. For what ever reason, this appears to be my destiny in life…I beleive everything happens for a reason and I now know that I was meant to learn from this and pass on my knowledge…I have also met some very wonderful people on this journey, people I would not have ever met otherwise and I can’t imagine NOT knowing these people!

When I was on Ron and I’s Brain Tumor journey I also met so many special people who still to this day, 14 years later, are still in my life…We still have our days when our journey’s take us to the dark places in our minds and it is in those moments I know I can reach out and always have someone walk me through the dark and back into the light.

I feel a calm flooding over me as I am finishing up this post and know that I will sleep well tonight…I write to soothe my soul and to hopefully bring all of you on my day’s journey into the world of “Mesh & Brain Tumors” and back to your realities, whatever they may be…I do not write for pity or self-gratification, I write to help me heal and anyone else that needs to be healed.

There is beauty all around us, we just need to stop and smell the roses every once in a while…

 “Often daunted, NEVER defeated”

 

 

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