Tuesday, December 27, 2011

Another Caregiving Hat

Hubby goes in tomorrow for surgery to replace his intrathecal pain pump.

It’s also my birthday (let the singing begin)!
Hubby has been in pain since I met him (although I try not to take it personally).  Mere weeks after hubby’s son was born, Hubby was traveling back to his baby from working out of town when he was rear-ended by a drunk driver (the person who hit him was driving on a suspended license and it was his 4th DUI). 

Hubby dealt with major injuries and spine pain and was on a lot of pain meds.  He was on quite a bit of pain medication but, over time, went off it and did his best to control the pain with over the counter pain medications because he didn’t like the stronger stuff. 
We met during this over-the-counter drug phase, we married, his pain increased (I tried not to take this personally). 

Hubby saw a pain specialist (and a chiropractor and an acupuncturist and massage therapists and whoever else might have been able to help relieve the pain).  The pain specialist said he had Degenerative Disk Disease caused from the accident.  The doctor tried all kinds of treatments (nerve blocks, stronger medications, physical therapy to name a few). 
Nothing brought him relief.  Hubby was debilitated by the pain and he could no longer work.  He was declared disabled, we took a financial nose-dive, hubby’s view of himself took a major nose-dive, depression enveloped his entire being. 

We had three kids under the age of nine, it was early in our marriage, our finances were a mess and hubby was in severe and chronic pain.
It was ugly.

Hubby tried all kinds of medications to bring him some relief from the relentless pain.  Some medications incapacitated him so completely, he was unable to drive or function as a father or husband (sheesh, he could barely get out of bed).
I should also mention his mood was, well, on the cranky side.   The kids and I all had to not take this personally.

The situation was unbearable for everyone and we had to come up with another solution.
The intrathecal pain pump gave us hope.  The pump promised less pain (never promising to rid Hubby of it completely but promising his life back) and it gave us hope that the strong narcotics hubby was on could be discontinued (or, at least, greatly reduced). 

Fentanyl is delivered from the pump through a catheter into the area in the lower spine causing the pain.  Because the medication is delivered directly into the spinal column, there are fewer side effects from the medication and Hubby is able to actually function without a foggy brain and have reduced pain.  He still takes medication to help control the residual pain but it is nothing like those early days of our marriage (or right after his accident). 
The pump is not a cure-all.  He still has reactions to the oral medications which can cause all sorts of physical and behavioral problems (for instance, he was on Neurontin for quite some time until it turned Hubby into an angry, out of control stranger and I told the doctor he could either live with Hubby himself or change the medication).

Hubby no longer takes Neurontin.
Thankfully, we’ve had a great stretch without behavior issues or depression.  Hubby still has pain but he knows how far he can push himself and when he needs to rest.  I’ve learned to stop telling him what he shouldn’t be doing because it will cause him more pain.  The changes we’ve both made have helped make us happier people and have kept us married for close to 15 years.

The pump runs on batteries so needs to be replaced every few years.  This will be his 3rd pump (well, 4th if you count the time the doctor accidentally installed it upside down – oops!).  The device needs to be replaced as soon as possible because it is showing signs of not working and the battery going out (giving Hubby either increased pain or withdrawal symptom s or both).
We found out just before Christmas that a cancellation came up on the doctor’s schedule for tomorrow so surgery has been scheduled.  Hubby feels terrible that he is having surgery on my birthday but I think Hubby having pain relief for a few more years is a pretty terrific present (although – shhh, don’t tell Hubby – it definitely gives me “you owe me” ammunition to use in the future if I ever need it!).

For the surgery, I plan to wear my Mickey Mouse ears from my 50th birthday celebration in Disneyland last year which, for me, is just the perfect caregiving hat.


Judy, The Reflective Writer said...


Oh pain, it is such a life destroyer! I had a ruptured disc, and I did not have significant pain with it - more sensory disturbance and difficulty walking - but about 6 weeks after the surgery I had excruciating pain in my upper body (which I learned was from inappropriate compensation to my weakness). The pain was unbelievable and I could think of little else. So I understand how pain takes over a life.

I am so pleased that you found a solution that didn't involve the strongest narcotics. You and your husband have certainly been through a lot! And to think he has also opened himself to helping with Robert's needs...really speaks to the kind of man he is.

I agree that something that makes your husband feel better is a pretty good birthday gift! Hope everything goes smoothly and you still have some time for a little birthday celebration.

Judy Stone-Goldman
The Reflective Writer
Personal-Professional Balance Through Writing

Leslie said...

Chronic pain, IMHO, is worse than anything else, because you simply cannot forget it, not for a moment. I used to work for the Pain Management Center at Stanford, and controlling intractible pain was one of the most frustrating problems the doctors faced. The punps are wonderful things. So is family who doesn't take things personally. Thinking good thoughts of your hubby. Happy Birthday, Trish.


Unknown said...

This brings back memories of my Father. He also had to go on disability and that messed with his head to no end. As a man it's difficult to not be the provider you want to be. Being a small business owner, I can relate to struggling financially. I think it's great that you were able to endure that time in your lives, because I know how terrible it can get. I'm wishing your husband some full healing and a speedy recovery! Thanks for sharing!

Imogen Ragone said...

What a journey you have been on - and your husband! Chronic pain is such a difficult thing to deal with, as it totally takes over your life. I'm so glad your husband has found something that works for him to give him significant relief. I had chronic neck pain and tension for years and the Alexander Technique was the thing that really turned things around for me (so much so, that I trained to teach it to others). The different thing about the Alexander approach is that it teaches you to identify the ways you tense and tighten your body that are either causing or aggravating your pain so you can learn how not to do that anymore. So - rather than learning something new, you are learning to let go of what you don't need. And rather than exercises, it is something you apply to all your daily activities so you are doing them with less tension and more ease. I felt like I really got some control back in my life, rather than just being subject to the neck pain.

It sounds like your husband tried a lot of things, but if he hasn't already he might be interested in looking into the Alexander Technique too. It's been shown to have great results for long-term relief of back pain, and maybe it could help him get even more relief than with the pump alone.

I agree - relief from pain for your husband is a great gift. It sounds like you are a wonderful support to him. I wish you a very happy birthday!

Trish Hughes Kreis said...

Imogen, Thank you for telling me about the Alexander Technique. I haven't heard of it and will certainly research it more. We're open to anything giving him relief from his pain. It's always amazing to me how our blogging community helps each other! Welcome to the CD, Imogen. I look forward to reading your blog too. Thanks for the bday wishes too!

Trish Hughes Kreis said...

Dennis, You exactly understand what all this has meant for my husband. His entire self-worth was tied up in his working image and that was very difficult for him to deal with. I am sorry you had to experience that growing up - I know the kids have had to deal with a lot but I'm hoping it helps them in their relationships as adults. You are a very empathetic person and your dad's experience with disability may have helped make you that kind and empathetic person. Thank you for sharing your experience and I'll keep everyone posted on the surgery.

Trish Hughes Kreis said...

Leslie, It must be frustrating to work towards relieving pain for people and not always have 100% success. I'm happy we've been able to greatly reduce the pain but, like with so many health situations, I secretly hope the pain will someday be completely gone. Thanks for telling me about your experience at the pain clinic - it's good to know that even at a respected clinic like Stanford, there are these same frustrations and hopes for relief. Thanks for your support, Leslie.

Trish Hughes Kreis said...

Judy, Thank you for sharing about your own pain. It is interesting (and not uncommon) for the pain to show up in a place other than where the injury is and you're so right - it's from compensating for the original problem. My husband has a certain way of walking because of trying to compensate for the pain and then that causes pain in other areas. It sounds like you understand how pain can overwhelm a person. My brief description of how it really can take over and affect a person's life doesn't do it justice. Thanks for the bday wishes -- wishing you a belated happy birthday and hope your year is full of wonderful surprises!

Imogen Ragone said...

Trish, here's some information on the large-scale study on the Alexander Technique for back pain relief that was published by the British Medical Journal: http://www.bmj.com/content/337/bmj.a884.full It's a bit technical, but if you scroll down the page a little way there's a nice video which helps explain more about it.

Unknown said...

Is there no end to the ammount of caregiving one person can give? Evidently not. Trish, you are my hero! Whenever I start feeling sorry for myself, I think of you. Then I realize how easy I have it. Happy Birthday my friend.

Trish Hughes Kreis said...

Oh, Bill, I'm no hero -- I always say people should do what they're good at and, hey, I'm pretty good at caregiving. :-) Thank you for the birthday wishes! I got a great gift of a successful surgery (and a few more Christmas decorations). haha!

Franziska San Pedro said...

Hi Trish,

I hope you had a good birthday and the surgery went well! What a birthday gift..
Oh my, what pain can do! It's good that you found something that makes your hubby's life easier and with less pain.

I am hoping that he will recover quickly.
You are the most wonderful wife he could ask for, what a lucky guy he is that he doesn't have to go through this by himself. You carry a tonload with you by being there for him -I so adore you!
Much love,


Trish Hughes Kreis said...

Franziska, Pain can permeate every part of your being. It affects everything and is always there. This device has allowed my husband to have his life back and be the person he really is (because pain robs you of that too!). The surgery went well but we had to return to the doctor yesterday for an increase in the dosage (they started out super low to test a theory about the catheter). He was in way too much pain so they increased the dosage and things are better now. I so appreciate your kind thoughts and hope you and your own hubby have a wonderful & happy New Year!

keepupweb said...

Trish, I had no idea that your husband dealt with so much pain. You have an amazingly positive outlook on life and I'm grateful to have met you on Facebook. I can just picture you at the hospital wearing your Mickey Mouse ears. I'm sure it brought a smile to more than just your hubby.

Happy Belated Birthday!

Trish Hughes Kreis said...

Sherryl, I was hoping Hubby would still be groggy when he woke up to see me with those ears on, but he was too awake when for him to think he was having strange hallucinations. :-) He is recovering and feeling better each day which is a good bday present. I'm happy to have met you on FB, too, and look forward to learning more about technology from you in 2012! Have a wonderful New Year!

June Sockol said...

I can't imagine the kind of pain your hubby had to go through all these years. I'm glad they found something that works for him but it must still be frustrating to have surgery every few years to replace the pump.

Hopefully in a few days (or weeks) once he's recovered he'll take you out to make it up to you for your birthday! :)

Heidi Alberti & Atticus Uncensored said...

I'm just so happy that they had a cancellation Trish! I know from our conversations that you were anxiously waiting for the replacement. Sorry it had to fall on our birthday though... since my birthday was sucky, maybe we should celebrate our Cap bdays again soon --- this time with wine!! :)

Hope hubby is feeling some relief. Hugs to you and thank you again for just being you!! & how fortunate that we're in the same city & get to see each other -- yeah!

"commentary to give you paws..."

Trish Hughes Kreis said...

Heidi, Great to have you back! Hubby is recuperating from the surgery pretty quickly. The day after surgery was tough because the doctor started the pump meds off on a super low dose so he had to bump them up to get the back pain to come down. Right now, the main pain is from the incisions. Once that goes away, we'll be able to see if this new pump helps his back pain even more than the old pump. It is great being in the same city and being able to meet for lunch! We'll do more of that for sure this year.

Trish Hughes Kreis said...

June, Hubby will be making it up to me for a long time if I have any say in the matter. LOL! Replacing it every few years is fine, I just wish it took away all of his pain. It takes away most but it's still tough to see him in pain or not sleeping well because of the pain (although I don't usually see that part because I am a very sound sleeper). :-) One of my goals for 2012 is to have lunch with you since you are not that far away!