Spinal Surgery, Family and Holidays

I just wanted to let everyone know that I just had my 2nd back surgery of the year last Thursday. The first was to do many many things from T10 to L2 including fusing almost the entire length, fixing scoliosis, kyphosis and twisiting, getting it so my spinal column was no longer blocked. This surgery was on the lower part of my back from L4 to S1. Some of this damage was from the lupus that I didn't know about. Much of it is just plain old bad luck as there are no injuries on my back (except my tailbone had a break so old that the doctor said I might have been born with it). The surgery in March was so much more extensive and much more painful but at least I had a long recovery time (from March until August). This surgery doesn't hurt anything like last time. Nonetheless, it hurts quite a bit (one side a lot more than the other so that gives me one GOOD side).

The last week before the surgery was quite hellish as I gave final exams and had to get them all graded and course grades calculated, get all my holiday shopping completed (because I can't drive for 2 to 4 weeks now), pack my office (we are moving to a new building and the movers came the day after my surgery), get all my preop stuff done and because I could not drive after the surgery and knew that even a car ride was painful, my mom insisted on my house having to be clean for the company (she and my dad and my sister's family for Christmas.

I must say that family can be very helpful (my mom took care of me many days after the last surgery and a few after this time) but they can also make your life hell. My sister originally said that maybe they would bring me a doggie back of Christmas dinner (how's that for including me?) and when I said, no, we'll have it at my house and split up the food (my only part was roast turkey pieces and veggies - something I've taught my kids to do), she insisted that we get takeout. From my hospital bed, I had to argue her down once again from the takeout concept by responding to "So I don't get my way?" with "No, you don't get your way. Someone is not going to get their way and this time, it's you". Can you imagine someone so sure of her rightness that it became her way against mine (post surgery)?

After I got home was another (!) day of supervising my mom cleaning my home (i.e. randomly putting things in random containers in random locations - that will be fun to find later!) and then finally Christmas arrived. Time for the magic...but wait, family was there and I mistakenly thought that the child in everyone would come out and make the day magic, I was once again mistaken. My sister arrived and told me that I had to put out my dog (VERY friendly and they know it) because their 9 year old was a "little scared" of dogs (which is because my sister kept a dog that bit him in the face 3 times a few years back) so that pissed me off being told what to do in my own home (and trust me that this came before Merry Christmas or how are you really doing). Anyway, I was really pissed off and since I should not be on my feet, I got my stuff started and laid back down in the bed in a closed room so the dog got some people contact. My mom came to my room and told me that I was the hostess and I should be preparing all the food! OMG. What part of surgery or kindness or compassion do these people not get? I pointed out that each person brought multiple dishes and knew how to get their own dishes ready and I had no idea how to do anyone's dishes other then my own which was under control.

Anyway, sorry for the venting but I am now in the delicate position of my mom being one of my helpers and absolutely not wanting to talk to her. Knowing my sister and mom, I am sure that they view me as being in the wrong and will continue to do so. Sigh.

Dear Lynn,

After reading your post, I really wanted to invite you to stay in my guest room. Bless your heart.

First, I am sorry you had to have surgery, but hopefully, this will correct some of your pain issues. I've not experience such insensitivity..ever, so it is hard to identify with your family issues. You really do not need the added stress after having such a surgery. Perhaps by now, things are a little better I hope!

You are an adult and you're in your home so feel free to speak up. You just need some peace and quiet and time to heal. I'm sure your mom means well cleaning your house. (When she is through, please send her to mine)! I find sometimes, in order to receive the 'goodwill', some bad may come along for the ride. Try to relax and not let the little things bother you. This too will pass. But as you know tension is not good when you're trying to heal a back surgery!

Put on some soothing music, an enjoyable movie, do some deep breathing, or invite a caring friend with whom to share your heart. Stay in your room... And let the rest of the world go by....even if it is in your home!

Feel free to vent anytime. We are here for you. And if I had a magical wand, I'd try and fix it for you; however, I have found that in the hard times, I grow the most in patience and grace. We care and please let us know how things are. We'll pray for a miracle for you. You probably already feel better just getting it off of your chest!

Love and hugs,

Faye

LynnMath,

Every family is wierd. I swear we could exhange families and never know the difference. I also agree with Faye, that sometimes what they percieve as helpfulness, is the way for people to pat their own selves on the back.

Take back your home and your dignity and get rest and heal.

DeAnne

I understand family saying or doing hurtful things. I've had to discontinue contact with my only sibling because she has been so cruel to me... and not just about lupus. She has attacked other parts of my life and broken confidence with issues regarding my son. I had to draw the line or I was going to be seriously ill I feared. Now, I am dealing with explaining this to my mother who is making me feel guilty. So I get the frustration of appreciating the help but not the 'advice.' I agree with LynnMath and Faye as far as please feel free to vent here and, they may think they are doing the 'right' thing. I often put on sit-coms. My favorites these days are "Hot in Cleveland," "Frasier," and "The Golden Girls." It is easy laughter. I also recommend doing what we did. We are broke due to my husband's lay-off a few months ago so Christmas was spent without a single gift under the tree. My 20 year old son even appreciated the peacefulness. We then patted each other on the back for knowing what the season is about. I'm holding on to that reality through these tough times. I did something right along the way. ;-)

I admire your strength. Make sure you allow yourself rest, and vent to get out the ugly so you can heal fast. ox

Hi Lynn

I'm sorry it was so stressful for you. Like Faye said, I've not experienced the insensitivity that you did, and I think the pain and recovering process exacerbated the situation. I wish you a speedy recovery : ) Trisha

Hi Lynn, I felt a great relief as you finished your thoughts. It feels great to come here with people who truly understand. Moms always mean well. I lost my mom and dad tradically and would long to have them be here for me during this time in my life. I live in a different state from all my family. It's just my 2 daughters, grandson and a few friends from church. The holidays are difficult, because sometimes I spend them along when my kids go back home to see their dad. I am an introverted person so I receive my engery from being along. Sometimes I use skype and phone calls to stay connected. Many exclude me from there plans because they are not sure if I will make it or not. Mom's can be funny when they want to make things feel normal and you feel not excluded from the fun, but man you have to love them. Sisters are a different creature.

I wish you a speedy recovery and a Happy New Year pain free! xoxox

OMG. I was told I cannot have my back surgery. (sounds like what u had is what I need) My Ortho Surg. Said Im too high risk. I too for various reasons had a hectic holiday. We need to chat. Im new to this… how do I contact u? I hv many questions ab back surgery. Mugs

Hello again to all… Mugs here. I am new to this. Lynn… i believe i need to go to our hm page to contact u ab the back surg questions. But then I relized… this is a support group for a reason, so join in. (Id still like to ask u Lynn some pre surg questions.) But for today…here and now, to add to this topic. Im suffering from dealing with back pain and the demands of the holidays knowing 2013 is just around the corner. I want to be positive. But a few daysbefor Christmas day My sciatica caused a fall that landed me in ER. To hear those words… I advise u use a cane from . Merry Cristmas to me. I do hv a very comical outcome regarding recieving my 1st cane. But its 8:45 and I need coffee ! I will follow up. My cane story involves my 11 yr old twin girls.

LynnMath,

I am happy that you came through your surgery and are on your way to wellness and independence. Family members can be good and then they can be a pain sometimes. I guess we do have to take the good with the bad. I'm used to living alone, and although I enjoy company, when the company leaves, there's always a feeling of relief.

Maybe if you made a long written list of chores for them to do, it would redirect them and keep them busy and out of your hair and they would have a purpose. Maybe. Keep telling yourself that this is only temporary and soon you will have your house back to yourself, minus the invaders. Unfortunately, you'll probably have to go on an easter egg hunt later to find your misplaced items. It's only stuff.

You can't control what your mom or sister think about you, but you can control what you think of yourself. That's more important. Don't waste any of your precious energy butting heads with them. You need it to heal. If you have a headset with some music or audio book, use that and block them out. Find peace somehow. Even a few minutes of peace can go a long way.

You're in my prayers and I hope your recovery is quick.

Hugs,

Ally

LynnMath,

I went through 2 back surgeries in 01 and 03. I am absolutely stunned that you could even do what you did, but you need to heal which means limited movement while the discs fuse. Don't let anyone tell you that you have to do anything that you can't do. I spent 8 weeks on my back doing little more getting up to use the bathroom. Your back needs to heal or you'll be back under the knife before you know it. You will have a much better quality of life if you aren't in MORE pain. Best wishes on a speedy recovery.

DeAnne

Glad to see your surgery was an success…May god bless you during your recovery an so on after…Best wishes:)

Thanks, DeAnne. My mom (nor any family member like my sister or dad) has not talked to me since Christmas which is also unusual because she usually checks that I have soone to take cae of me but....I don't really care! I can't imagine any scenario in which she apologizes. I think starting off with a much more massive surgery initially makes this one seem like a piece of cake! I agree though - what I should mostly be doing, what I am capable of doing, is to lay flat on my back! I reremembered a discussion about my mom that I had recently. My mom has been spending a lot of her energy and time taking care of my dad whose health is not good and my older brother who is mentally retarded and lives in a group home. I think that her driving force when within the family is to have everyone wait on her thereby "thanking her" for taking care of these pople. Doesn't help for people that actually need help but I think that and control are what is driving her. Regardless, I need to find a way to get it under control while recovering since that is VERY important to me at the present time!

I go to the surgeon for a postop visit Friday morning so I'll find out again what I am allowed to or not do.

LynnMath,

You do what YOU need to do for you. Your health is the most important issue at the moment...not validating your mother's needs. I, too have a whacky mother. When I had my surgery I flew my aunt out from another state as I had no one to help me the first time. Although it was many years ago, I still remember it being a terribly painful experience. Trying to do all that was somehow expected of you just boggles the mind. Rest & heal. You will be so much better for it. Mine was L4-S1 lamanectomy then fusion. Second one they went in through the front to access the spine. ANY surgery is a big deal. When you are immunocompromised it is an even bigger deal.

You sound like you have your priorities in order. Best wishes on a speedy recovery.

DeAnne

LynnMath said:

Thanks, DeAnne. My mom (nor any family member like my sister or dad) has not talked to me since Christmas which is also unusual because she usually checks that I have soone to take cae of me but....I don't really care! I can't imagine any scenario in which she apologizes. I think starting off with a much more massive surgery initially makes this one seem like a piece of cake! I agree though - what I should mostly be doing, what I am capable of doing, is to lay flat on my back! I reremembered a discussion about my mom that I had recently. My mom has been spending a lot of her energy and time taking care of my dad whose health is not good and my older brother who is mentally retarded and lives in a group home. I think that her driving force when within the family is to have everyone wait on her thereby "thanking her" for taking care of these pople. Doesn't help for people that actually need help but I think that and control are what is driving her. Regardless, I need to find a way to get it under control while recovering since that is VERY important to me at the present time!

I get to go back on my Plaquenil in a week which is great. Not sure if it was affected this quickly but on my 3 month rheum appointment, I found out that the number of inflamed and swollen joints had doubled - I'd only been off Plaquenil for a week! I got to stay on the Celebrex (a double dose!) BUT I have to be off of it post-surgery for THREE months! OW! I remember when I finally got to go back on it before that I could literally feel it leave my body after 11 hours and before I took the next dose!

In terms of stress and surgery, I was not acting any differently other than trying to rest and stay out of the way. My mom and sister might have been under more stress but that does not even make sense when I'm the one in pain. Really the only effect is I had no choice but to tell them NO. A few days before Christmas, my mom came over to clean up more and was quite demanding about how clean it should be and I would tell her that it was not important. I got lectured on my children's behavior and cleanliness too. All I can think of is how many ways mom was out of line. It should not have come down to "How many ways can we ignore the fact that Lynn had surgery?".

Here it is three days after Christmas and not a single family member (meaning mom, dad, sister) has called on me to see how I am doing. How very very very sad!


On the other hand, I have some very cool xray pics of what my back looks like now. I never seen to appear sick or in pain to people but these pics really make them turn around! LOL

LynnMath,

It is times like these that you find out who will be there for you. You have absolutely no reason to beg for what should be a natural instinct of a mother. You have a family here. If you were closer I know that many of us would be there. We have all had situations like yours and as unfortunate as it is, it usually does work out. When you are feeling less angry (and rightfully) tell them what you are feeling. If necessary have your doctor write a letter explaining the extent of your disabilities. Because you probably don't look ill, many will think that you are overreacting about your illness. Show the x-rays, the radiologist reports, and any other medical documentation you have. Lay it out for them, let them make the next move. It's up to them at that point. If you live in a city that has support systems, by all means make use of them. I think you will find people that truly want to help are the ones that we want around us.

Wow, listen to me giving advice. I used to work with students with disabilities and it is difficult to be on the other side. That said, we all know that teachers don't make much money, we do it because we truly want to help. There are others out there with the same wish to assist others. I wish my health allowed me to continue helping others, so it is difficult to ask for help.

If you are able to call, please make inquiries into assistant programs. I know that there are those that will help with shopping, cooking, cleaning, etc.

And remember you have a family here.

The family dynamic is pretty well established. I don't expect my mom or sister to come around. Mother puts a lot of time and attention to helping my dad whose health is not good. Because of that and helping my mentally retarded (now called developmentally disabled) brother every other weekend, she feels that everyone else "owes" here. My sister has several times in the last few years decided that my 19 year old son has a disability which I, of course, have argued but regardless what right does she have to try to tell me there is something wrong with my son (who just completed his B.S. at 19)? Like many families, there are issues and I'm the "nice one". In fact, my sister once said icily to me that there was one thing you could say about me and it's that I am too "nice". Oh brother!!! I think everyone has let their true colors shine just a little too bright!

As to disabilities being invisible, certainly the lupus often is and I don't show pain all that often no matter how messed up my body is. I should wear a photograph of the hardware I no carry around with me (and maybe all my medications and pain medications). I have hardware from T10 to L2 and L4 to S1 leaving only L3 untouched. The doctors marvel at how I've managed to get this far but I am a go getter, an Energizer bunny, that just keeps going "Most of the time". When I don't, no one gets it. Oh well

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Healing well! Physical therapy at home for a month...and I can take real showers!