Grabbing the Bull by the Horns...

It has been a while since my last post. I thought I would be able to write some more but between work, home, the boys and the disease the only time I have is at night when I am trying to sleep! In the last month I have tried to take back some control. Tried is the key word. I guess it is a good thing that I can try at least?

I went to the rheumatologist with a list of my things I needed to go over, things to tackle, and overall questions and concerns of what we are and are not taking care of. I felt good about it. I felt in control. The first being pain management. I hate pills. I have become a pill popping girl since diagnosis and it is still not helping. His only idea was to change to oxycontin. Which I refuse. I need to be able to work, care for my family and not be drugged up day in and out! We increased the mg of the vicodin. It still only helps to take the edge off so I can do some things. It all just hurts. I have been typing for less than 5 minutes and have already had to stop, shake the hands, and give them a rest.

I am losing the use of my hands due to the pain. That really sucks. This morning putting on my younger sons socks was a chore with my shaking hands and the pain. Silly that something that was soooo easy to do once has become something I dread.
Holding hands is a thing of the past. My son can hold my finger because holding hands which should be comforting is painful and uncomfortable for me. That sucks. I miss it! I am getting off track! Back to the Dr. Apt. where I tried to gain control!

2nd item to discuss was the prednisone. I have been on the steroid for a year. It helped greatly in the beginning. Now, not so much. So...why use it when it gives me "steroid face" moodiness, and weight gain. He decided to switch it to medrol. At first I was excited about it. Then realized it too is a steroid and will have the same effects! But, I felt good about making some changes hoping something could turn this around.

The result...apparently the prednisone was working some. The pain has gotten worse. The exhaustion has gotten worse. Little tasks wipe me out for hours. I will stick it out until the next appointment at the end of the month. Then will be switching back. Guess the good thing is I learned that it was helping some!

3rd item to go over was my depression. Yes, after a year of struggling and saying I could do this without an antidepressant saying I do not need any, I finally admitted to myself and the doctor that I did need some. He said "I think that is a good choice and I believe you do need some after all you are going through". He gave me samples of Cymbalta.

OMG OMG OMG!!! I took it for 4 horrible horrible days. I felt sooooooo bad. It gave me flu symptoms, hot and cold skin crawly feelings, dizziness, nausea, and severe diarrhea. I tried to stick it out but could not! It was too horrible! I do not know if all antidepressants are this way??  I think I will just continue to cry and try to get over the depression without meds because I do not know if I could try again. They kicked my ass.

4th Item  was just overall talk about rheumatoid arthritis disease and how it effecting my daily life, what is swollen what is not etc.... Most of my joints are swelling, we knew that. Some days different ones swell. The shoulder is always in pain. There is a small joint by my collar bone that makes my shoulder stick with every movement. I do not really use my right arm for any chores or things as I cannot lift it above about a 45 degree angle without the pain. It is weird how random yet consistent the intense pain is. The stabbing makes me feel bones I never knew were there! Very odd to wake up due to a searing pain in one lonely little toe.

5th Item was my insomnia. Those with RA know how hard it is to get proper rest. I am up all hours of the night. This makes my RA flare more, makes me think more which leads to more depression, makes me stress more, making my ra flare even more and a bunch of other things!!! It SUCKS. I just have to figure it out though. I cannot take sleeping pills as I have 2 young kids I need to be available for if there is an emergency at night. So other than cutting back caffeine, relaxing etc....I will have to suck it up.

Well that was my attempt to gain control over some aspects of my RA and to switch things around as appointment after appointment with my rheum nothing changed. To sum things up I felt great coming out of the apt. I felt like I was going in the right direction.

The whole grabbing the bull by the horns thing did not work for me this time. It pretty much ran over me. All the changes led to nothing. They actually made things worse in most of the cases. So....day by day I will have to take things and hope that some adjustments will help.

Quest for Shampoo....

I am on a quest. It is most serious. I must find a shampoo and conditioner bottle that I can easily squeeze in the morning. Impossible? I will find out!

Winter makes my bones scream, more so than normal. Every day things are so tough! Recently, I am finding that winter morning stiffness is a whole different ballgame.

I must find ways to make life easier! After talking myself out of bed, I head to the shower. Once under the hot steamy shower I think ahhhhhh that feels good. Then I go to pick up the shampoo...I drop it...more than once. Now I have to bend down and pick it up! AGH! My hands are stiff, my fingers hurt. Once I do have a good grip I try to squeeze...and squeeze....and squeeze. Ummmmm, it takes me about 8 squeezes with little breaks in between to get the amount needed!!

Now to get it up and into my hair since currently I cannot reach above shoulder level! Then to start over again with the much tougher bottle of conditioner. So much for my feel good hot shower. I am now aggrevated, near tears and just want to go back to bed.

I have tried numerous different types of shampoo/conditioner. Some are better than others but I still must find one that does not make me cry in the morning. I know this seems stupid but if you were in the situation you too would like to find something that helps your shower go smoother. I did try the salon spout ones. These you do not have to squeeze but you have to pump it up and down a ton to get the right amount and that is just as painful! Tear-free Shampoo takes a different meaning for those with RA. I just want to find one that is easy to use, does not hurt to squeeze, does not slip, does not require a pep talk to myself about how I can do it,  and does not bring tears to my eyes!!!

IS THERE SUCH THING???

My quest is to find it. Along the way I will share tidbits of what I find that makes my life easier. As that is what living with a chronic illness makes me look for. If you have advice feel free to comment! I was diagnosed less than a year ago and struggle with day by day things. I am off to work. Day by Day.

"LIFESTYLE MODIFICATION"

"LIFESTYLE MODIFICATIONS" 


This is what they say I need to do to feel more comfortable. I have a few problems with this as it does not fit in with my family and life as it is. 


"Gentle" exercise: My energy has been zapped by my evil archenemy "RA" it leaves no room for "gentle" exercise. Also, I have 2 boys and "gentle" is not in their vocabulary. My one year old wears me out fast. Chasing him is enough to make me cry (and laugh because he is a joy).


"Rest as needed" again this is something that is hard to modify. I work 47 hours a week, sometimes more. I need a job to keep a roof over my families head. Work does not allow me to "rest as needed". Neither does my husband or kids. They cannot comprehend the need for Supermom needing help all the sudden.


"Pace yourself" Don't try to do it all! LOL! I have to do it or no one else will.  I do not have time to "Pace Myself" or I will not do it. 


"Reduce Stress" Really? I wish. Everyday is a trial. Everyday is another stress. Reducing stress? I try to breathe, I try to think is this going to matter tomorrow? Is this worth feeling this way? 
My Pain brings more stress!!! 


"Sleep" Well I try and try and try to get enough sleep and I can't. I toss and turn as after a short period on my left side I have to flip to my right, as I flip my knee or shoulder catches bringing more pain. Then I start thinking what I need to get done the next day, decide when it would be best to do things as some are easier at different times of the day. Then I lay there thinking about this thing that is taking my life over. And well lets just say Slumber land does not come easy. 


I am sure that all these would help. Yes I am not debating that. It is just that most of these take a lot more energy than I have or are not possible in my life currently. 




Bottom line...I get out of bed everyday in pain, tired, and hoping to get through the day without everyone noticing that I am miserable. I do this for my boys. Currently. I would do anything for my kids and if fighting my own body to get out of bed each day is what I need to do I will. I only can hope that someday I will do it for myself too. That I will not feel the need to wallow in it. That I will be able to once again jump out of bed and think Today will be great!




So until I can figure out a way to make these "modifications" happen I will continue to make the changes I can and hope that one day I can do more.