27 October 2011

Frozen Shoulder

I have to wonder.....

This morning I woke up with my shoulder that I just had surgery on completely frozen in one place.  I realized that it was in the 20s outside.  I have to wonder if the weather has something to do with it.

I know that people talk about the weather effecting their joints and how they feel.  I have felt this way before, but this was way over the top.  I could not believe how bad it felt.  I took meds.....and feel a bit better now.

The meds are a whole different matter.  I took my regular pain med and a muscle relaxer to combat the pain.  This is the first muscle relaxer since my surgery.  I am not sure it was a good idea.  The pain actually got worse as the pec muscle loosened up.  Grrr

The weather is suppose to be warmer tomorrow.  I am hoping to have more movement......at least what I had 2 days ago.  I am coming to the realization that I may never have full motion again and that what motion I do get will take a long time to get.  I can move my arm 90 degrees up in the front with assistance, but not out to the side at all.  I still have not strength in my arm.  A can of soda is about all I can lift....if that.  I know it is going to take a long time, but it is so frustrating.  I want my life back......so many things I want to do that I cannot do.  My dad says I should write a book now that I can write again.  Maybe that is an option.  Only time will tell.

26 October 2011

Still Here

I am still here....still not able to do a whole lot.

I am starting to have more mobility in my arm, but no strength.  I went to PT yesterday and had a different guy. I don't want him ever again.  Michael (my usual PT guy) was out and Daryl had to take care of me.  OUCH.  I am not sure if he knows about EDS.  He really pushed the limits and pushed them hard.  Michael is usually gentle and does not push past when I say ouch.  But Daryl did and I paid for it yesterday, last night and I am still paying today.  Would it be bad if I asked only to see Michael?  It is just the two of them and I don't want to make it weird.

I cannot do a whole lot, but some things are getting easier.  I can dress myself, but not undress myself (my husband likes that....he gets to help LOL).   I did manage to cook a meal or two, but cannot get things out of the oven.

While I am making improvement each day, it is still hard on the mind....I stress because I want to do so much.  It is extremely frustrating. There is so much I want to do that I just don't have the strength or dexterity to do.  One of my passions is scrapbooking and I lead a stamp club each month.  I have not been able to get ready for the next one or the Christmas card workshop I am doing in November.  I am going to have to get some help.  Which is hard too, because I like things done the way I want them and it is hard to tell others exactly how you want it without feeling bossy.  I am able to hold a book now...so at least I am getting some reading done.  Since I have better hand function, I think I will start crocheting this week.

Trying to keep positive.  Wish me luck on that front.  It will take time to get back to  "normal" and I need to keep that in mind.

11 October 2011

Long Night

I know there are ups and downs, but this sucks. Yesterday things were so good.  I am sure that is why I hurt today.  I bet I over did it doing things to take care of the boys.  I really want to help them do this and not have them grow up too fast having to take care of mommy.  But having done so much yesterday I am going to have to have them help me more today.

I did not sleep well last night because of the pain.  Not sure how I can find some way to actually be comfortable and get some rest.  I do sleep better with pain meds on board, but having two boys at home by myself makes it hard to take pain meds.  I am sure there at people who do it, but I just cannot bring myself to do it.  What if I take it and then something happens to one of the boys?  I would not be able to drive.  While I feel that they don't impair my thoughts, what if I am wrong?  I cannot imagine making the wrong decision in with regards to them.  There is always that chance.

Today is a lay low day.  The boys are still running low fevers so I decided to keep them home today.  It makes my life a little easier not having to take them out.  A major reason for not taking Ben out is because I do not need him to get sicker...he is on the verge of a hospital visit and I am trying to keep it away. The longer I quarantine us all, the less like Ben is to get something that pushes us over the edge on that front.  I am not sure I could handle that.....arm not working right, Ben in the hospital and Matt not home.  Yeah, could not do it.  I know my limitations.

10 October 2011

Pain and Illiness

I knew I was on the verge of a cold last week.  I knew it was coming....I kept thinking this sucks.  My arm/shoulder really hurts and now I am getting sick.  I don't know if that is true.

I am wondering if my shoulder was hurting worse because I was getting sick.  Through this weekend while I have battled the hot flashes, cold chills and aches.....I realized that all of these things started in my shoulder/arm.  Is that weird?  Is it kinda like feeling the weather?

I guess it could have been the weather too.....we had a huge cold front roll through this weekend.  We had our first frost of the year as well as a few flakes.  Those things hurt me too...I just don't know.

So, I know that I am feeling things in my shoulder/arm more than the rest of my body.  If it is the cold I am fighting or the cold weather that came through, I will never know.  What I do know is that this weekend has taken it out of me.  My shoulder hurts and my chest hurts too.

I think I am on the mend....I woke up this morning with less pain than the last week.  I am not sure if it is because the cold is subsiding or the weather warming up again.

My dear friends with EDS......if you have any ideas, please let me know so I am prepared for the future.  I might not be able to avoid all of the symptoms, but I can prepare for them at least.

07 October 2011

I can't do that

Matt has had to help me with so many things....I have to tell a funny though.  It was the second or third night and Matt made an awesome dinner with chicken breasts and rice.  I was not feeling well when it was dinner time, so I waited and ate after the kids went to bed.  He warmed it up and brought it out to me and set it on my tray with a knife and a fork.  Seriously....the chicken breast was whole and he gave me a knife to cut it up.  My mom and I broke out in laughter and Matt just looked and us and said, "What?"  It was kinda funny.  He has really had to learn to help and try to understand the things I cannot do.

He is amazing.  It is slowly getting easier on all of us as I am getting better and have more movement.  It is still very painful for me, but better.

05 October 2011

Shoulder Surgery

So, it has been just over a month since my shoulder surgery.  I really hope it was worth it.  It has been a long road.

I was in so much pain the day of and night after.  The doctor did an orthoscopic entry to begin just to see what they were going to need to do.  Then they actually put an incesion in my armpit area.  It comes up the front and it about 3 1/2 top to bottom.  It was extremely painful.  I was given what is called a party ball after the surgery.  It is a nerve block that was left in my shoulder for 3 days.  I also got pain meds perscribed too. When I got home from my surgery I was seriously sick.  I could not keep anything down.  I vomited in the recovery room and for the rest of the day.  Matt was so nice and kept trying to help me eat little bits and drink little bits of water.  I kept telling him that my shoulder hurt and I wanted pain meds.  He was right when he told me that I should not take them until I could keep something down.  Finally, the pain got so bad that I screamed at him and he gave me some.  I kept them down for the most part.  That was about 10 PM.  I noticed then that the party ball that was giving me the nerve block was leaking.

The next morning I had a post-op appointment with the PT and the nurse.  I told them as soon as I walked in that the block was leaking.....they were on the phone with the surgical center in a matter of seconds.  I was told to go there immediately after my appt.  The PT guy was great.  I was still in a serious amount of pain and he was kind in being careful while he was showing me the three small movements that I was to do for the next 3 weeks.  He told me not to move it unless I was doing these three things (turning my hand back and forth, up and down, and try to get my hand to my mouth).  The nurse was not so nice.  She ripped the steri-strips from the small incesion off and replaced them.  She went to grab the ones on the big incesion and I about came unglued.  It hurt so bad.  (Remember that at this point the party ball was not working and I had only had one pain pill, or so I thought.) I did not let her take them off.  She was not nice about it.  You have to understand that I had steri-strips on was because with EDS, stitches could actually rip through the skin and not stay....causing even more problems.

We made it out of there pretty quick.  From there we went to the surgical center.  I was seen right away and they "flushed" the block (at least that is what they said).  The block was moved around some and I was sent out.  It started dripping in the waiting room so I asked them to look at it again.  They were unable to do much and I was told that it was not necessary.  So, I left and went back home. When I got home Matt came to the realization that he had not given me a pain pill the night before, but an antibiotic instead.  Ugh....no wonder there was so much pain. No pain meds and a block that did not work.  Oh well, I started getting pain meds as soon as I got home, but the block never did work.

The next couple of days I just hung out.  The brace was cumbersome so I could not do a whole lot anyway.  After about a week, I was able to start taking less pain meds and was able to pick Max up from school, but not much more.

It has now been a month and I am just getting back on my feet.  I got to take my brace off the end of last week and I am so thankful for that.  I am still in a bit of pain and movement is still not very easy.  I can use my hand, but barely lift my arm up.  Stinks, but works for now.  Matt is still doing a lot around here that I cannot do.  I am taking the kids to school and picking them up.  I also went with both of them to the pumpkin patch on school field trips this week.  It was horrid......I was able to keep up and smile for the kids. It really was fun, but I was done by the time I got home.

My first physical therapy appointment was this morning.  We are taking it super slow.  I went in, was given heat, 2 stretches, and then ice.  That was it.  Nothing else.  No exercises.  I am not to lift anything more than a cup of coffee or can of soda.  I can use it as I see fit, not past pain or adjusting my posture to accommodate movement.  It is going to be a long trek back and painful.   I am going once a week for awhile and then we will reevaluate it and see what is next.  I think I will be seeing the therapist for 6 to 8 months.

Matt will be gone next week and I am nervous as can be.  I know that I can do it and I will work through the pain, but I am still nervous.  Good thing for me is that it is a 3 day school week.  That means I only have to go out for those 3 days.....if I am having a rough day, sticking to home is much easier.  I also have two great little helpers.  I am sure we will work it out.  Besides, I am sure that Matt can use a break, even if it for work.

I am hoping to blog each day to chronicle to come back from my surgery and share with others with Ehlers-Danlos so they know what to expect.