Accept She’s Gone: Give up on hope…

thinking-face_1f914I’ve written many times before about creating a new self and coming to a place of acceptance about my illnesses and the situation created as a result. Today I feel like a fraud. This is because once again I am at the stage of having to accept my limitations.

I honestly thought I had done this before. I sat and talked with myself and accepted that I am just not the same person anymore. Then I got a hold of a little hope and I forgot.

We say once there’s life there’s hope and once there’s hope we can live but hope can be a dangerous emotion at times. You see its ok when the pain is horrible and it is clear that nothing can be done at the moment. Then when I meet a new doctor who offers a different perspective, or I use a new medication and it offers a higher level of pain relief…..I begin to hope.

I begin to believe that things will get better…………things are better. To be in the least pain you have been in for months is cause for hope. To have a new procedure bring relief is hope. To find medication that works amazingly at first is hope. Then something happens that dashes it all.

When the pain intensifies, or my body builds tolerance for the medication and I feel the pain more or when a few days/ weeks/ months after the procedure I am back where I started; all my hope disappears.

I know the social butterfly does not exist anymore- she’s gone. I know super mommy and super wife is gone. I know that I am just not able to do certain things anymore but in the back of my mind there is still that hope which pushes me to go on.

So the day when I can cook a few courses of a meal and bake gluten free and regular cake my hope is high. When I can stay out a little longer or do a bit more at work I have that hope in the  back of my mind that I will be able to do it again tomorrow or next week. Then the day comes and I am stuck in bed in pain and its all gone.

I’m not the only one who has their hope dashed time and again. My husband and children are also impacted. Although, they live with me in this state they hold on to hope as if its a life boat and they are drowning. They see improvements and increased energy/ ability to perform a function and start to treat me as if I am well. Their requests and desires come to reflect that belief. I am then left to remind them that I am not well…….just as much as I remind them I have to remind myself as well.

So the deal is this: I am ill. I have no energy most days and I fight to push through. The deal is I have controlled substances to take in order to function.  The deal is I will never be that girl again and I have to accept that. The deal is I may have to set more realistic goals for myself that I can actually achieve,

But I refuse to let her go……….I refuse to give up hope; so what do I do? I’m getting tired of the balance beam that I’m on. I feel like I am falling …………on one side is utter despair and the other is hope. Where does being realistic stop and letting go of hope begin? Idk.

More and more I realize that this chronic illness/ pain management dance is an everyday struggle. My positive disposition yesterday is not enough to last for today. Yesterday’s acceptance and working within the confines of the illness are not enough to cover today when I want to run and can only walk.

In theory I accept that she is gone………….in reality I miss her………..I mourn her.

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Post – Surgery Update

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I arrived at the hospital just after 10:00 a.m. and was immediately processed in by the staff nurse on duty at the time. She informed that the doctor was already in theatre with another patient and that she had been looking for me earlier.

We went through the usual review of all documents and anaesthetic checks and then I changed into a gown, anti embolism stockings, booties and head cap; got the IV attached along with the blood pressure cuff and waited until I was to be escorted into the theatre.

I walked into the operating room and proceeded to lie down and prepare for all that was to come.  The last thing I remember was the Anaesthetist saying that they were just about ready to proceed because I was going under and the oxygen mask being put over my nose and mouth.

The next memory after that is being pulled from the most exciting dream by people calling my name and becoming aware of the most intense pain and feeling as though I was about to freeze.

Sidebar: This is always my experience coming out of anaesthesia. I am always dreaming and not immediately aware of being in hospital and I am always cold; cold till it hurts.

I tried to talk but my teeth were shattering and my legs hurt like I could not remember them ever hurting before. The nurses covered me with the electric blanket to get me warm quickly and the doctor came over to examine my legs (they had told me to bend them and I could not get it done, I tried but was unable to move them).

Looking back, my feet (legs) were placed in stirrups for the entire procedure, which was around two hours. Not your ordinary GYNAE office type. these ones held from my knees down in a special boot to keep circulation going. I was positioned as in the photo….my boots were a bit longer though.
933267_dMy thighs were rebelling from the pressure placed on them for such an extended period. After another 15 minutes or so I was able to bend my knees and move my legs however I chose. Despite all this progress the pain was not easing enough for me to rest and I was just too groggy to be discharged anytime soon. I ended up being admitted to the ward and spending the night in hospital. I didn’t sleep much since I was monitored- vitals taken etc. and medication given every few hours or so.

The Results??

Well the doctor’s words ” we didn’t find much in the way of Endometriosis”. No surprise for me there. That should be he didn’t find much that he can identify as Endometriosis. What he definitively identified was excised. However, he did say they found numerous “unknown” deposits throughout my pelvis. Those were also “cleaned up” but most sent to pathology for examination.

Secondly, my ovaries were left intact…yeah (NOT)…sigh….because all the cysts had disappeared and they looked fine.

My left ovary was stuck to the bowel, which was then adhered to the pelvic wall. There were also numerous other spots of adhesive tissue/ bands which were cut and the scar tissue removed.

In effect, there was more to be done than I anticipated.

Progress?????

Well its been just about 7 days and I am slowly improving. The 5 incisions are healing but they still hurt. I am able to walk around the house but tire quickly. I have been mainly just resting and taking my pain meds.

It will take a few beats for me to really gauge the success of the procedure and improvements. However, I can say that the separation of the ovary, bowel and pelvic wall has been immediately noted on my end. Whereas, before the op I would have  a BM and feel the stretching and most times have cramping and have to lie down for a bit; since the op I have not had that experience…..no stretching……..no cramping….no pain. So, that’s one positive!

Beyond that, I am hopeful and I do believe that overall things will be better……….especially with the pain.

I have no delusions. Whether Endometriosis of Pelvic Congestion Syndrome; both are chronic, progressive and degenerative. I take whatever I get from the procedure and move on. Continuing to fight, advocate, research, learn and grow. I know that whatever happens God’s got this …………..and that’s good enough for me.

Surgery on the horizon: bittersweet decision

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I finally had my appointment with the surgeon last weekend. Over the past few months I have been back and forth to my GP, the hospital, OBGYN and finally the surgeon. My last visit with a doctor other than my GP didn’t go very well. I wrote about that in Dear Doctor from yesterday 😦 . That visit was horrible. However, he did give a referral to this surgeon who specializes in Laparoscopic surgery. I really don’t want a large cut. I had that with the hysterectomy and it took sooooooo long to heal. I don’t want it opened again if I can avoid it.

I went to this surgeon and the visit was as far as night from day when compared to the last one. The appointment was at 8:40 a.m. I arrived a few minutes early and was immediately ushered into the nurse’s office for the urine, blood pressure and weight checks. The doctor came and ushered me into his office shortly thereafter.

I spent probably 30 minutes in his office with him. We discussed the referral from the previous doctor and then he put that aside. He was interested and invested in just listening to me tell my story. He took a comprehensive history of all my illnesses and medications, not just the pelvic issue related ones. He took the time to hear and see me. It was the most relaxing conversation I have had with a doctor, outside my regular doctor, in a long time.

We then spoke about the examination he wanted to do and why. He left me in the office to speak with the nurse and then ushered me into the examination room with the ultrasound machine. He took the time then to talk to me and ensure i was ready for the exam and then proceeded to do the pelvic exam. It was very uncomfortable but not painful. As usual it was most painful on the right, also as usual there was nothing “abnormal” about my examination.

After this was the trans-vaginal ultrasound. Again uncomfortable, but not painful. He concluded the examination and left for me to dress. He then returned and ushered me once again into his office where we spoke for just over half hour.

The ultrasound revealed that my left ovary appeared normal in size but for whatever reason he was unable to see the infamous right ovary. Trust me he did look and probe and probe. I actually asked him if something was lost while the exam was being done. It just seemed like he was probing a bit too much. However, the ovary couldn’t be seen.

Food for thought that is. Not sure what there is inside that could be hiding the ovary. Time will tell.

The doctor suggested that I go on a course of treatment with GNRH agonists. These would put me in a state of menopause. If the pain decreased then we would know for sure that the extra pain that I’ve been experiencing is due to Endometriosis. If it worked then I would have to use it indefinitely……..in reality more than 10 years.

The good thing about the visit was that although an OBGYN, he didn’t discount my Pelvic Congestion Syndrome diagnosis. He accepted that it exists and rightfully stated that there is still a lot of unanswered questions as far as PCS diagnosis and treatment is concerned.

He also accepted that surgery would help in determining and hopefully fixing the problem or at least alleviating the pain. I decided on the surgery, mainly because I had done the hormonal treatment before and it had not changed anything.

We put the wheels in motion for the surgery. I did the blood tests, made the appointment to see the anesthetist and sent the quotation to the insurance company. Due to the doctor’s schedule I will not be scheduled until May. I don’t have the date as yet but its better than nothing. I see the doctor in two weeks.

This decision is bittersweet to me. I am happy that there is some progress and we are going ahead. I am afraid though, that this op may change nothing. I am afraid to hope……….yet I can’t give up hope. Its all I have sometimes.

I accept that things may remain the same. That is the risk that I take. I am going in for an Operative Laparoscopy. While I am under, the surgeon will determine what is to be done. If Endometriosis is seen or any indicators of it they will be excised. The adhesions that are suspected, if seen will also be dealt with (this is a catch 22, this op will also potentially lead to adhesions). I also go in with the understanding that depending on what is discovered the op may be converted to open surgery. I’ve no control over any of this.

Yet, I am at peace with my decision. Like all else before, God and I will get through this together. He promised, and I trust His promises explicitly. This will get better, this too shall pass.

 

 

 

 

 

 

 

 

 

 

30 Day Chronic Illness Challenge- Catching Up- Days 18-20

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18. Do you think you have become a better person through illness? Explain.

Yes, I am definitely a better person as a result of being ill. I was always a generally empathetic person and sought to consider the feelings of others in everything I did; this is probably what guided me to my profession.

However, I have found that illness has given me another level of empathy, a deeper level; one that can only be reached through this type of experience. This has made me a better person, it has also made me a better Psychologist.

'I see a bright future, a transformation: Beauty, wings, elegance...'

19. How do you feel about the future?

I am very optimistic. If I am honest I would admit that sometimes I get down to the point where I can only see directly ahead, the next minute or hour.However, I also see God just setting me up for greater things.

Many plans and dreams that I have had and held for years, in some instances even doubted myself; I see falling into place. God has opened opportunities and caused me to meet people and make associations that are directly needed to fulfill these same dreams. Avenues that I didn’t even know existed have opened before me.

It gives me hope. My future may not be totally pain free or disease free; but I have a future…..and it is bright!

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20. Have you met anyone with the same illness? Did it help?

I have met numerous women with Endometriosis but I have not met anyone in person who has Pelvic Congestion Syndrome. I guess this is because it is relatively new and un-researched. I think PCS is also misdiagnosed and under- diagnosed; while Endometriosis, although enigmatic is a more common diagnosis and to some extent better understood.

Meeting these ladies whether in person or online has been encouraging to me. I felt as if I was alone for such a long time. Although it hurts to hear their stories and I cry with them it is comforting to know that others are fighting with me.