Chronic Health Issues & Stages of Grief

Acquiring a chronic health condition isn’t easy. With it comes loss and with loss, the process of grieving. Stages of grief may be:

Disbelief (shock that the loss has occurred)

Denial (refusing to accept the loss)

Bargaining (making deals with deity, doctors, etc. )

Guilt (If I had done ______ maybe this never would have happened to me.)

Anger (towards the loss, illness, deity, etc.)

Depression (may run throughout the entire process until the loss is accepted)

Acceptance and Hope (Life has changed but it will continue and be meaningful. Acceptance doesn’t  mean you have to like your illness, but it can mean learning to manage it and be  with it as you continue on with your life.)

Today, try:

Taking a moment to ask yourself if you are in a specific phase of grieving related to PMDD or another chronic health condition.

Recognize that some of what you’re feeling may be related to loss and the process of mourning.

Ask yourself what you would do if a loved one were in a similar stage. If someone lost a loved one, you would (hopefully) not tell them to simply get over it and move on. Your heart would open to them. You would reach out to them with compassion. You would allow them the time it can take to move through the stages of grief. Try doing the same for yourself or asking someone else for support.

Honor your loss. Take time to recognize that you are experiencing a significant change.

Remember that you may find yourself moving forward, back, and forward again. For example, when I chose to have a total hysterectomy BSO, I spent some time with PMDD in the disbelief and anger stages even though I’d already been there before. The loss of the ability to have children and the potential health risks of having the surgery at the age of 36 left me feeling incredibly angry towards PMDD and the medical community. For a little while, I could not believe that I had come to the point of surgery with PMDD.

By simply taking the time to consider these stages, you may find that it helps you to soften in your expectations for yourself and possibly, to move forward. Remember that the time it takes you to move through the stages of grief is unique to you. That said, I can offer from my own experiences with chronic health issues that movement takes time (sometimes more time than you might prefer) but it  is possible.

* I am a PMDD Advocate and CRC offering supportive services for women with PMDD and their spouses/partners. Please contact me with questions about services or to schedule a free, initial 20 minute consultation. You can also visit me here.

PMDD and the Body as an Ally

            This morning I read the words: If I created my week with my body as my ally, taking into consideration its needs, I might… (Jennifer Louden’s book The Life Organizer).  Being in a place where I view my body as my ally and not my enemy has taken me years to experience. Illness has highlighted a sense of my body as enemy, and illness has brought me to feeling my body is my ally. It has not been an easy path to this position and arriving here has been fairly recent.

            In January of 2009, after treatments for PMDD and endometriosis were no longer working and I had exhausted medical treatments I was willing to try, I was given the choice to have a total hysterectomy with bilateral salpingoopherectomy (TAH-BSO). This meant that every reproductive organ would be removed. Having dealt with the chronic pain that both endo and PMDD produced, the mental symptoms of PMDD, and the emotional toll that everything had taken on me and my family, I chose to go through with surgery.

            Making this choice and moving through the emotions that came with it prior to surgery brought  gratefulness for my body that I had seldom been able to feel before. As I took long walks during winter and allowed myself to mourn the pieces of my body I would soon be losing, I began to feel connected to it in a more complete way. I felt empathy and was able to acknowledge the gifts it had given me. These gifts included the things I took for granted, like a heartbeat and breathing, but also many years of good reproductive health, a pregnancy and child.  It took preparing for a hysterectomy and loss to stop being angry and bewildered by my body – a body I had previously viewed as almost deceiving me, as being something I could not trust.  I found myself trying to understand its perspective. I spoke with my body as I walked – You’ve worked so hard for me. You do so much just to keep me alive daily. And you’ve given me a wonderful history (periods, a sense of belonging in being female, pregnancy). But something has gone very wrong, and these once wonderful parts are harming me more than they’re helping me.

            I wish I could have experienced this before I reached the point of having a hysterectomy, because I think it could have helped me a great deal when I was dealing with endometriosis and PMDD. Before surgery, my fear and anxiety about what happened to me every two weeks  seemed to take a terrible problem and amplify it if not physically (but perhaps), absolutely on an emotional level. Instead of turning to my body and taking time to be grateful for the abundant ways it supported me and allowed me to be in the world, I braced myself for pain and emotional and mental turmoil. I buckled down with fear and worry and felt overwhelmed and out of control. I blamed my body for everything.

            How would I have thought about my situation if I had seen my body as my ally and not my enemy? How would I have prepared if I had seen my body as something going through what I felt emotionally, like a sick friend, a sick relative, someone who had been there for me in numerous ways and was there for me but had become ill? It wouldn’t have fixed everything or eliminated the symptoms, but I have to believe it would have helped. It would have been an enormous shift in attitude, one worth attempting to take. I say this because I continue to deal with chronic health conditions and have seen myself handling them with more energy and peace and much less fear since viewing my body as an ally. Life with chronic illness isn’t perfect, but I have found that there are ways to make it a little easier and to learn from the experiences as well.

            I remember a post on Jen Gray’s site where she and her partner wore pink hats that said Fuck Cancer. It made me feel a sense of strength and of not being alone. I did not have cancer, but I did feel incredibly alone in my pain, fear, and symptoms. What if I could have put on the pink hat and imagined my body doing the same, substituting the word cancer for my own conditions? What I know now is that whatever was wrong then and what I deal with now, we were and are in it together.

* I am a PMDD Advocate and CRC offering supportive services for women with PMDD and their spouses/partners. Please contact me with questions about services or to schedule a free, initial 20 minute consultation. You can also visit me here.

PMDD Hope – Support for Women with PMDD & Significant Others…

I am happy to announce that my new site is now open. I am now 100% finished with the design portion of PMDDHope and invite you to stop by. I am excited to have a blog again (I will continue to post here as well) and to be able to offer assistance to women and significant others. I know that women need the support and understanding of significant others. From experience, I also know that it is sometimes more helpful to have another person there to explain, answer questions, and assist in moving in a more positive direction when dealing with PMDD or any chronic health condition (vs. only the person who has PMDD).

To give you an idea about what I have been working on, here is a bit from my site:

Are you searching for support and understanding for PMDD? Are you wondering if guidance and counseling can help you…

Live your best life in spite of having a chronic illness?
Develop the quality of life you want and deserve?
Manage your health condition in an employment setting?
Attend a university with the support you need?
Decrease tension and misunderstandings about PMDD between you and your significant other, family, and friends?
Create effective strategies to assist you and your loved ones in living with PMDD?
Decrease blame and increase understanding regarding PMDD?
Identify and speak with health care providers regarding PMDD?

I am offering free, initial 20 minute consultations – services are confidential and offered via phone. Feel free to contact me with questions or to schedule an appointment.

I am very excited about the site and look forward to offering help for PMDD. This is a new chapter in my life and I am so glad to be here with you!

Jennifer

* I am a PMDD Advocate and CRC offering supportive services for women with PMDD and their spouses/partners. Please contact me with questions about services or to schedule a free, initial 20 minute consultation. You can also visit me here.

Back on one medication

After too much hollering, feeling annoyed, picking at everything and just being a down right bitch, I have started back on one medication today, Topamax (my mood stabilizer).

At first I felt like I had let myself down, but as I sat and thought about it in my head I realized a couple of things:
*I can’t stand the person I am right now and I have fought too long and hard against this person

*If I need it, I need to take it…Practice what I preach :) … and I need it, LOL

*I have said before, I have been diagnosed with Cyclomythia too which is very rapid up and downs and very quickly. Basically, I don’t stay down long enough for it to seem as though I am overly depressed or up long enough to be manic, so it’s not bipolar. It is very exhausting though because of the quickness that can occur, and it’s not something that has to be going on all the time.

My PMDD makes it worse, but this is something outside of the PMDD. I had hoped that everything would just fall into the PMDD category, but I have finally started my period and am off all my meds and this one wk that I am always longing for is hell too. The cyclomythia is something that was diagnosed when I did all my work with the psychiatrist and doctor that I loved. It all made sense, but still I hoped. :)

Anyway, because this is outside of my PMDD there is a chance that I will still need meds even after the hysterectomy. The good thing is that after the hysterectomy, even if I still need the meds for the cyclomythia, I will be able to have the quality of life I am longing for, like the one I have during my good one week.

Basically, I jumped the gun which is something that I do when I get excited. I am so completely stoked about the thought of living PMDD-free, even though I will openly admit I am scared as hell too. The very idea of living a full month feeling the way I feel during my one week right now that I am allowed, is almost to hard to even believe.

So, with all this said, I have started back on the Topamax, but I am still in high spirits. I feel so incredibly great during my one week PMDD-free time, while on my meds, that I am okay re-starting them.

This will all be a new journey for me, the hysterectomy, balancing my medication out if necessary again, etc… I am thrilled to share it with all of you and hope that it will help more of you.

My hopes now are that because I am so medicine sensitive that this medication will kick in very quickly so that I will be able to enjoy my 1 wk time once my period is over. Also, that my children will quickly forget the crazed and sick woman that came to visit the past couple of weeks, and feel relieved that there ‘Mom’ is back.

For everyone out there, maybe this posting will help you realize that we all have different things that we have to figure out within ourselves and our own families. There is never any one answer and sometimes stumbling is the only way to figure it all out. I know I had to do that these past couple of weeks and especially today.

Well, I must try and get some rest and I will post more on this later. I am thinking about all of you and hope you are all able to enjoy this week.

Stef

Update: 5/28/09 appt: Decision & date

My appt went awesome, man it has taken years to say that!
I saw another doc in the office at the Womens Institute, my doc got called out for surgery and I didn’t want to come back that afternoon.

He confirmed by decision and said that he completely agreed with my choice and that the ovaries must go to make a difference.

He talked with me, not at me, and found that I had exhausted all measures at this point. They don’t have anything else for me and believe it will take away my pain too.

Though I wasn’t expecting to meet another doc it went well, a 2nd opinion.

We scheduled my appt for the earliest available… July 18th!

I am even more excited and relieved that soon I will be living the quality of life I am so desperate for, though I am aware many more stops will be difficult along the way. I’m ready. I feel I have a great support system in place and as hard as living with PMDD is, I will definitely make it thru this.

Stef