This blog is about my fight with Pudendal Nerve Entrapment, how it's affected myself, my husband, our family and my existence. It is designed to expose the REALITY behind this awful disease and the shame that comes with it. I am determined to fight this disease and help others that struggle as well. God bless. fightpne@yahoo.com
Thursday, June 21, 2012
Giving it to God
I had a whole blog post written and I was writing it from my phone and it deleted it. So, here I go again. In life, there are three spectrums of time, I guess. Past, present and future. Lately, I confess, I have been grieving the past and DREADING the future. Now, what kind of spirit is THAT? That is a messed up spirit trying to bother me. Jeremiah 29:11 says "I know the plans I have for you, plans to give you a future and a hope." And, another loud sigh comes out of my soul.....
I would like to let anyone who reads this far know that I am doing better since my surgery almost 8 months ago. However, I have hit a large stumbling block in my recovery and it's got me down. THAT IS WHY I AM HERE. Writing is easier than weeping, sometimes, I suppose... although I've done my fair share of that today --- thank goodness I was alone... but sometimes, I don't really care. I am who am. I am real.
I want to go out in the world. I have dreams. I want to speak to many people about this, on a small scale and large scale. I want to bring hope to hurting people. I want to live victoriously. I want to sit and have coffee with someone suffering and give them Jesus and the way out. The work I do for The Pelvic Messenger is part of that. It is my ministry - I will make Jessica's part of it my own, and that is the freedom with which I am given. But, I must not forget my VOICE. The enemy tries to make me forget about that. Says, "you ain't got it no mo'!" WHAT? What a liar.
I have a dream today --- so my dream is to learn Villa-Lobos "Bachianas Brasilenas" for soprano and cello sextet. Can I pull it off? Large, through-the-nose exhalation...
If you love me, send me an email and tell me what I need to do to shape up my mind. I am all for criticism, rebuke, anything. I am being a freaking loon here. I need to get back on track. Yes, there is pain and it is flared and I don't know why it persists, but maybe it has for this long so that you would read this and send me an email. I don't know. Who knows.
It is long past the time that my ice packs were supposed to be off burning in hell --- help me get to that point, merciful God.
Today, I thought about the beautiful music of Glenn Burleigh's "Purpose - Nia" and thought about well, God, what is my purpose? If I had half a sane brain cell right now, I'd realize that the song simply says "I was born to love the Lord with all my heart, my soul, my mind, and strength." This is my purpose. So, I need to get back to that place, then all the rest will fall right in.
Help me out by giving me a swift kick (virtual) in the rear and tell me to shape up.
Or as I say to my daughter, "straighten up and fly right."
I'm just giving it to you, God.
Tuesday, May 8, 2012
My brain and why I don't like how it rhymes with "pain"
I have been getting so much stronger. My physical therapist is such a sweet person. She is more like a friend - but equally phenomenal therapist. She has the amazing ability to put you at such ease when doing things to your pelvic floor. For those that may not know what the means, the pelvic floor is, well, your "land where the sun don't shine." Now that I have explained it to you...
What hurts the most is the connective tissue and scar mobilization. Scars hurt. I guess that is why they are scars. I was born with a very ugly looking birthmark that fully covered the inside of my entire right arm, underarm, half of my right breast, and a portion of my back. It was not one of those red or port-wine stained birthmarks; rather, it was a raised, flesh colored, bumpy, scaly looking lizard-thing. When I was 12, I had two surgeries to remove it. The first surgery is where two skin expanders were placed to expand clear portions of skin adjacent to the birthmark. I had them injected with saline twice a week, once by my plastic surgeon, and once by my mom, a nurse. They ended up looking like two huge breast implants: one above my right breast and the other on my back below the shoulder blade. Not so easy to cover up or explain when I was quite the insecure young adolescent 12 year old. After six weeks, I went back into surgery where the skin expanders were removed and the birthmark cut out and the stretched skin sewn together in what now (at age 31) looks like a HOT mess!! Oh, but I've lived with that hideous scar for almost 20 years now. I wonder what the birthmark would have looked like at this point. That scar STILL hurts -- not the same of course, as it did 20 years ago, but I still cannot have anyone lift me holding under my arms (like I would a child).
So, the point is, scars stretch, and scars fade. I am cranky, I suppose, from my brain realizing an increase in pain from the recent scar mobilizations (not to mention jumping up and down like a wild woman at gospel choir rehearsal last night -- but it's really muscle pain, and not nerve pain, from the jumping, that is). And, the jumping was for good reason -- praising God almighty for the miracle of me standing there singing in ZERO out of 10 pain when one year ago I could hardly walk.
I'm guilty tonight of fear. In the past 4 weeks, I have not realized pain over a level 5, and I think that was really only on one particular occasion. But, fear reared its ugly head today after those mobilizations. The sky was so gray, and the rain so dense... it just set me into an ugly mood. I put myself to work, accomplishing many things.
But, what comes to mind right now is this:
1 Peter 5:8
Wednesday, April 25, 2012
Death has lost its sting
And, reader, if you should read on, read this portion from an essay by John Angell James, 1859, entitled "Christian Hope."
Saturday, March 17, 2012
My story
Wednesday, March 23, 2011
Grieving
I haven't blogged in a few weeks. Life is emotional, busy, complicated, dramatic, frustrating, joyful, all wrapped in one. Grief is a reaction to a major loss. It is most often an unhappy and painful emotion.
Causes, incidence, and risk factors
Grief may be triggered by the death of a loved one. People also can experience grief if they have an illness for which there is no cure, or a chronic condition that affects their quality of life. The end of a significant relationship may also cause a grieving process.
Everyone feels grief in their own way. However, there are common stages to the process of mourning. It starts with recognizing a loss and continues until a person eventually accepts that loss. People's responses to grief will be different, depending on the circumstances of the death.
For example, if the person who died had a chronic illness, the death may have been expected. The end of the person's suffering might even have come as a relief. If the death was accidental or violent, coming to a stage of acceptance might take longer.
Symptoms
There can be five stages of grief. These reactions might not occur in a specific order, and can (at times) occur together. Not everyone experiences all of these emotions:
Denial, disbelief, numbness
Anger, blaming others
Bargaining (for instance "If I am cured of this cancer, I will never smoke again.")
Depressed mood, sadness, and crying
Acceptance, coming to terms
Wednesday, March 2, 2011
A's Mommy's 4 month post-operative report (Hibner)
Dear friends,
I wanted to share with you my 4 month update. I am now 4 months post-op from LEFT sided pudendal neurolysis with Dr. Michael Hibner, Phoenix, AZ. I've posted along the way here and there, concerns, etc., but I want to try and break it down a little bit.
--Before my surgery, I was in 7/10 pain as soon as my feet hit the floor in the morning. My left Alcock's canal felt like a knife was stabbed through it. With every step I took, I felt a horrible pinching, burning, pulling sensation in the crease of under my buttock and perineum. It would send neuralgia (tingling, burning, shocking) into my vulva, up through my piriformis and all over the place. By 12 noon, I had to lay down completely prone (on my stomach) and it would take at least an hour for the pain to subside.
Post-surgery (4 months) --- there is no stabbing in the Alcock's canal when my feet hit the floor. There is no pulling, pinching, stretching sensation. There ARE devastating (at times) new symptoms such as electric shocks that feel like lightning strikes my crotch. However, I have been told this is a GREAT thing as the nerve is regenerating and the shocks should subside and get less frequent over time, which THEY ARE.
--Before surgery, I took no pain pills (opiods). I was only on 300 mg Neurontin 2x a day, Vaginal Valium suppository 10mg once at night, 10mg Amitriptyline at night, and Prozac 20 mg once a day. I did not take opiods because they did not work for my neuropathic pain, plus I have a toddler and had to look after her. It was only after my Botox that I gave up and had to hire a nanny part time and put her in daycare. I couldn't do it anymore.
Post-surgery (4 months) --- I took Percocet for a while in very low doses (maybe only 2 pills a day at the max) for about 2 months post-op. This helped with the incisional and ligament repair pain and sacral pain. It did nothing for the nerve pain. The thing that helped the nerve is the ON-Q pain pump. I swear by it. I wish I had a permanent one! Now, my meds are Valium (oral) 5mg 2x a day, Prozac (which will most likely and hopefully soon change to Cymbalta --- I see the psychiatrist Friday), Lyrica 75 mg 2x a day, and the Amitriptyline 10mg at night. I also take TONS of vitamins --- a multivitamin with no iron because I don't want constipated, colace, Miralax, High Potency B Vitamin complex for nerve health, Vitamin D, and cranberry pills, also Culturelle (a probiotic)
At 3 months post op, I started driving short distances, using no cushions. I lean back in my car, sorta, while driving. I feel my right side a lot more while in the car (as you can see in my signature, I will have another TG later on this year for my right side). While walking, I feel my right side pinching, pulling, stretching, but NEVER to the same degree my left side was before my surgery. The left side was way worse (as indicated by clinical examinations by Dr. Hibner, Loretta, and by the 3Tesla MRI I had by Dr. Potter). I started PT at 8 weeks post op. I started internal PT at 12 weeks post op and gave up after two internal exams, which flared my right side so much it had me down for the count for a whole week. My right side needs done.
Good news --- my left side feels softer internally than my right side. This has SWITCHED since before my left sided surgery, where my left side was as hard as a brick. The nerve is no longer entrapped, so the muscles have either atrophied due to lack of use, or they are calming down.
---Sitting--- hahahaha... not so much. I can sit on a completely hard surface for about 30-45 minutes with no nerve pain, just pain and pressure from the ischial tuberosities. My husband made me the modified Antolak gardner's kneeling pad cushion thingamabob and that helps some. Ice in the Alcock's canal still feels the best.
As the weeks go on, I am noticing less pain on the left and more on the right. Remember, my right side is still entrapped.
My ligament feels completely solid and grafted. My PT said with ligament repairs, at 4 months they should be good to go. I'm still careful though not to bend it <90 degrees. Still too chicken. Picking up A still causes a bit of an increase in pain. I am getting stronger. I am eating more. I have gained weight. This is good.
BOTTOM LINE: I HAVE MANY BAD DAYS. I AM TRYING TO FIND THAT "BALANCE' BETWEEN DOING TOO MUCH AND NOT ENOUGH. We still can't have intercourse. However, I am thankful and eternally grateful that I had the surgery with Dr. Hibner because there was nothing else. My life was zero. Life is coming back. I have accepted that my nerve may take 12-18 months to fully heal. I am glad I have come to that acceptance. You will still see me on the boards complaining from time to time, because I'm a human, and I don't know what to expect. However, I don't regret it FOR A SECOND. I NEEDED THAT SURGERY. It saved me. Thank you, Dr. Hibner, but most of all, THANK YOU JESUS! YOU PROMISED ME I'D BE HEALED, AND SOMEDAY I WILL BE COMPLETELY HEALED.
I hope that this post gave some people hope. That is what we are here for : HOPE.
God bless,
A's Mommy