It's been 7 1/2 Weeks Since My Hysterectomy and Bladder Surgery

I am happy to say that I no loner am suffering with bladder issues!  You can tell me all the jokes you like, and I will not laugh and take off running to change my pants ;)  I am also very fortunate that my pain is gone.  I still have a pressure feeling that I will not miss when it decides to leave me.  The exhaustion is immense still.  People ask how i feel or if I am glad that I had it, the answer is yes, I am glad to have had these procedures performed and I do feel a lot better.  It will be nice to be 100% again, and I am not there yet.  I will continue to research the disease and try to find a way to have a support group one day.  I need all of my strength for that.  For now I will continue to write mt book and look for an agent who feels that Endo Awareness is as important as I do.  To date I have only contacted 12 agents.  I will let the Holidays come and go, then pursue it more.  My book WILL be out in the world one way or another.  For those who are interested in my journey to be an author, I have a blog about that that you can access from this page.  I hope that all of you who celebrate Christmas have a great one!  XX

Support Groups?

I noticed that my area does not have a support group for Endo Sufferers.  I would like to start one in the future, after I feel well and have the time to devote to it.  There is so little awareness in the world and so many sufferers.  Many of us are not diagnosed properly and are told the issue is in our head.  Now I am not to say that I am not a bit dafy at times but...I can attest to the fact that this condition is and was not in my head.  It was real.  I have many scars to prove it!  Eleven external and countless internal scars decorate me and my battle is not fought alone by any stretch of the imagination. 

Endo-Warriors and Survivors all over the world are fighting to make a change.It is my dream to set up a foundation to help people who want to attend college and have Endometriosis.  The great issue is cash at this point.  There is so much that needs to be done and if we work at it we will make a difference one by one. 

Recovery

I am far more comfortable now than I have been in a long time!  Although, recovery is still slow, it is so much better each day.  The surgery went well and my doctor was pleased with the results of my post op exam.  It was actually pretty funny because the doctor did not recognize me at first!  He did a double take when he passed me.  I had lost 15 pounds lying on the couch!  I also put an effort into my hair; outfit and makeup making me look like a picture of health.  I told him that there was still a lot of tenderness and a slight pulling feeling and he was not surprised at all.  He found inflammation and dried blood that had not corrected itself after surgery, but is expected to be gone soon.  The doctor told me that this was the worst case he had seen in YEARS!  Yay Sheri!  Hey, when I do something, I do it to the extreme baby! 

It's been 12 Days Since Surgery

My surgery was on Oct 27, 2011.  I am amazed with modern medicine, but wish my recovery was faster!  I am still hanging out in bed or on the couch most of the day.  Sitting up at the table with my family at meal time is all I can handle right now.  I had a complete hysterectomy and mesh to suspend my bladder.  My plans and reality differ quite a bit. In my mind I had envisioned myself writing in my blog every day and feeling like doing my last homework assignment but reality consisted of sleeping, sleeping and more sleeping! My medication, Lupron Depot made me very forgetful prior to surgery, but at least my pain was under control for the most part.  Now I am awaiting the day where I feel able to do my last project for school and finally earn my BA in Psychology.  I want it so bad but cannot think straight right now and am unable to tackle the assignment.  I am told that I will need to start taking Hormone Replacement Therapy (HRT).  That will be interesting and it is my hope that all goes well and others who face these challenges can look to my experience and find comfort in their own situation.

Sleepless Night

I’ll bet you would assume that my insomnia is due to my endomretiof***ingosis, well, not this time at least.  I am not in physical pain right now, thank the lord above.  I am so discouraged with myself and my lack of reasoning and memory.  The medical assistant at the Big Hospital says it’s because of my medicine.  Great!  At least I have a good reason for my insane behavior. 

I messed up a few of my bills and now the credit card I use at my favorite store in the mall, New York and Company, is all screwed up.   Apparently I used the card a few times and forgot to pay the bill for the past two months, now I only owe less than $50.00, but for some reason I have late fees and the huge credit limit is reduced to a minimal amount that in my opinion is not even worth having since one can’t really buy much –maybe a pant leg or a sleeve with it.  I know the company must think I am not paying them on purpose and have no idea I am sick.  But I feel betrayed by them for not calling me to find out why I have not paid. After all the propane company called to ask me why I had not paid them and I was able to straighten everything out on the phone.  This is not like me at all.  I always used to pay on time before I became to forgetful. 

I have the money for these bills and just am so confused lately that I cannot keep anything straight.  My medical bills from the Local Hospital are just as much a mess too, I think I have it all straightened out but am not sure.   Actually I use a heath care spending card for my medical bills, so there is no excuse for not paying them as they come in, but for some reason I carry them around with me for months and do not take care of them.  Then get a bill from a collection agency.  Whoops.  Then I noticed that I already paid that one.  So confused, what do they want me to pay twice?  Is it an evil master plan to give a med that confuses me, and then send bills that I have paid to collection to try to stump me and make me foolishly pay again?  Is this what the elderly go through?  I remember seeing a news story about this a few years ago.  I am glad that the Big Hospital, where my new bills will be coming from now on uses a different billing company.  

This disease robs you of so much and yet, the other day I was able to attend a concert with my husband and have a great time without pain.  A few days later I was able to take my teenage son to a concert and gain have great time without pain.  Both of these pain free events are due to this lovely medication that also makes me into a useless keeper of the bills.  Go figure!  I guess you can’t have it all.  Unfortunately, I do want it all, especially a good night’s sleep, which won’t happen tonight.  I have not beaten myself up enough yet.  

I will use the rest of the night to try to figure out how I can raise Endo awareness and help others with the disease.  They need me, and I will be able to help them one day soon, after I get help for myself. 

Jesus help me, I am courting on you , please don’t let me down.

Surgery is Scheduled

Dear Diary,

I had a wonderful breakfast with my family Sunday 9/18/11 –strawberry waffles with whipped cream-- if you are curious.  (Hey, that could be important for my future book. Haha)  On our way home we stopped at the post office to check our mail.  There were a couple of envelopes that came from the Big Hospital!  I opened them not expecting to find the next few weeks of my life all planned out in black and white.  my long awaited surgery will be Oct 27.  I opened one envelope and found a list of my upcoming medical appointments.  There are three medical appointments before surgery and one after all have been made.   When I read those dates tears came to my eyes.  Finally! I can plan my life, and hopefully enjoy my life after surgery-maybe even a little before it arrives.  I feel like reinventing myself.  I will be the girl with energy, no pain, and a new lease on life so to speak!  Look out world, ready or not, here I come!  I will be unstoppable.  Eventually.  

Is Sheri Afraid?

People will ask me if I am afraid.  The answer today is no.  This can and will most likely change as the date gets closer.  Having been through IVF, and two other surgeries prior to my second pregnancy. I feel prepared for this and I hear that the Big Hospital has good food!

What About the Children?

My fear now consists of child care issues.  I will not be able to lift my baby for a long time and I am fearful about how he will perceive this.  Will he be confused and think I do not want to care for him?  His daddy and other family and friends will have to put him to bed, put him in is high chair, change his diapers and dress him.  I hope he forgets about that month or two when his mommy couldn’t be there for him as she’d like to be, but remembers he was loved by many folks and those people had to step in and help him. I hope he appreciates them and forgives me. My friend offered a few suggestions as to how to care for the baby after surgery; she suggested I feed the little guy at the coffee table instead of trying to lift him into his high chair.  Another friend suggested I can change diapers on the floor or a couch that he can climb up on to, so this helps my frantic mind a bit.

I am disappointed about not being able to attend my older son’s sporting and school events. He understands what is going on, but I hate not being able to drive him to school and pick him up from practice for over a month.  However, in reality the pain and illness have certainly stopped me from going to pick him up at school and attend every event I would have like to.  It is horrible to not be able to do what I usually do, but like I said before I know he “gets it”.  I do hope he forgives me too. 

To medicate or not to medicate....

For some reason I am not feeling too bad for the last couple of days.  I am so grateful, but know this will not last.  In a few days I will be back at the Big Hospital for more tests and my next Lupron shot.  I hope that I finally get my surgery date at that time. Prior to these past few good days, I was pretty uncomfortable and felt immense pressure again feeling like my uterus was going to fall out.  Needless to say I was sitting down a lot and taking pain meds from time to time.

One day I was at my desk, feeling pain and eating so I could take my pain meds.  If I do not eat enough before I take my pill, I get sick to my stomach.  So I ate a granola bar, a couple of pieces of toast and some fruit.  About a half hour later I felt a little strange, kind of floaty and goofy.  This was strange since I don't usually get any "high" feeling from my meds.  I decided to lay low and not talk to anyone and just do my work.  I moved my water bottle and to my dismay, there was my pill, I had not even taken it yet.  Too funny!  I did not take it either.  I waited till later to take it.  Who knows what would have happened!

Saturday, September 10, 2011

The morning started out pretty well, but as soon as I was nearly done with grocery shopping with my husband and toddler, the pressure started, if I had not been told by three different doctors that my uterus was in the proper place and not going to fall out, then I would swear that is exactly what I am experiencing, but alas, that is not the case.  It was so disheartening since yesterday was a goodish day.  I cannot say “good” until after my surgery and recovery are behind me, but as far as pain and discomfort goes, yesterday did not rate too poorly.  I am happy to say that I have not needed my heavy duty, don’t drive, and act like you’re not high, pain meds till today.   Today is discouraging, but I want you to look at the word “discouraging” closely, do you see the word courage in it?  I am going to be courageous and brave and not let this define the day.

Now in the past few weeks I would have hoped for something to happen to make my medical case such an emergency, that my surgery would be done right on the spot, unlike the Broadway production that it is turning into. Since my surgery is so complicated, many doctors and medical professionals will be involved in the process.  It is totally necessary and I get that…really.  There are docs for my Endo, docs for my bladder, docs to help those docs and before surgery you have to meet with the folks who will knock you out so you don’t feel the pain.  Love those guys!  

The wait continues, November seems like a lifetime away.  Folks tell me it will go by fast.  I hope they are right.

MoreTests! But I'm not done...

Oh blog, blog I have so much to say today, but so little energy.  My visit to the Urologist was very uncomfortable, but necessary for my Endo surgery.  The worst part is that I have to go for more tests just like the ones I had today before my surgery can be performed.  It looks like my surgery will be in November.  The doctors keep stressing the fact that it will be a tough surgery for them and me.  I am so hopeful that everything will go well.  

Having never been to a Urologist, I did not know what to expect.  Boy, was ignorance bliss. I  had a tough time relaxing enough for the doc to perform the tests.  At one point he filled my bladder with cold water and that was very surreal.  Basically, he was trying to determine if I emptied my bladder properly, which I cannot, and if I leaked due to stress of coughing or other reasons. The tests were pretty extensive, thankfully my doc is very good about explaining what needs to be done.  I was not very brave I must say, I was squeamish during most if it.  My uterus does not move and that's part of the reason why my pain is so severe.  The chocolate cysts (Endometrioma SP?) are also to blame for this pain.  So, both ovaries, the uterus and cervix are all going....then my bladder, which is effected by Endo too, will be suspended with mesh (not the recalled mesh) and who knows what else will be done.  Only time will tell.  Thank you for your interest in my journey :) <3

Will someone please just give me this shot?

It was a frustrating day but now that I am at home and have had my shot, I am relieved.

First of all, my boss was great about letting me leave early to go get the meds.  I am so fortunate to have folks at work that understand that I am miserable and are accommodating when I am unable to be at work.  This disease makes it hard to move and walk so it seems like some days I almost have to crawl to my desk.  Here’s hoping that I will feel better soon and leave the crawling to my baby. 

I got my Lupron Depot 3.75 shot, after driving a few towns away since that pharmacy had it last time I was desperate, just like today.   What luck that there was one dose in stock!  

However, it was a bit annoying to be met with such resistance when I arrived at the doctor’s office in town and asked to have the shot given to me there. The receptionist gave me a hard time because it was ordered from another hospital, but I am not blaming them at all since they have their rules to follow which are set up for safety, but it was annoying and when I am already on the edge. It was not a great experience.  The receptionist that has taken care of me dozens of times asked if I was a patient, that made me feel a little strange since I have been in the office a lot lately and she has processed my visits each time.  It’s funny how the staff at the Big Hospital are so much nicer and actually treat you like they know you even if you are a new patient.  They welcome you are grateful that you chose them to provide your care.  Here in town, at the local hospital, I personally do not feel that way.

Let me start at the beginning,  after being told that the mail order company the Big Hospital uses did not contact me to verify my information, I called the Big Hospital and spoke to the nurse there, who is an absolute angel who goes above and beyond the call of duty to make me feel at ease and helped. 

This angel told me that she would call the company and find out when I can expect a call from their office and expect shipment of my Lupron, which will suppress my ovaries and control my pain.  (Goodie!) She called me right back with in record time to suggested that I get the meds here in town like I did before if possible since the mail order place was too buy to process my order yet.  She even told them it was an emergency, but hey told her that all of the orders were emergencies.  That's not true though since this med is used for lots of other reasons.  But i digress.   I called the pharmacy a few towns away and was in luck, they had one dose left.  I was able to pick it up within an hour and rushed to my local OBGYN’s office to have it administered.  The folks at Big Hospital suggested I do that, so when I got to the office, I saw the same woman who usually checks me in and she gave me run around to put it nicely, finally, after arguing with her for quite a few minutes, she asked the doctor on duty if they would give the shot, the same shot I had there at the office one month ago.  She explained that it was an issue because they did not order the shot there, I understand but…How would I have gotten my hands on a shot from a pharmacy that costs $1,000?  I am not that sneaky, and why would I bother to do that anyway?  Do I have criminal stamped on my forehead?  Noooooooooooooooo. 

All in all this whole chronic disease has really opened my eyes to what folks with illnesses go through just to get help.