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02/12/2011 01:18 PM

The long and winding road.......

cella
cella  
Posts: 997
Member

I remember that song from Paul McCartney...

It seems to be such a long road with RA...

Do you ever get so tired of all the meds?....

As I glanced at my hands today, I noticed my knuckles..and thought?...with all the meds I am taking and have taken in the past, why do I still have deformities?....okay, I need thumb surgery, but my knuckles are red and swollen and I have those lovely blood spots on the top of my hand.....

The flaring does not stop....even with the heavy duty meds?....

Don't mind me, I am just whining....trying to overcome what seems to be just the way it is...

Still, I do wish I had my old self back.....

Ever feel that way?

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02/12/2011 02:18 PM
PauleR
PauleR  
Posts: 1817
Group Leader

Oh yes, Cella. I have felt that way. I've been quite down since Christmas when I had a terrible flare in my right knee. I had to get a steroid shot into the knee, which helped quite a bit, butI had to finally admit that if that flare had persisted, I'd be disabled. One night, at 3 am, my son-in-love called needing me to go be with Lily because they had to take the baby up to the ER (he's fine). I got up to get dressed and realized that I couldn't help them because I could not drive with my knee not bending. Thank goodness my husband was here.

Anyway, I hope things get better really soon. Take care.


02/12/2011 02:31 PM
jlacy46
jlacy46  
Posts: 288
Member

wow ifeel like that a lot i was handed my 5 month old grandson yesterday and about 5 minutes into having in my hands i had to hand him back because my wrists and hands hurt so bad and i had no strength. and it was my husband who was holding my hand the other day and look at it and said wow your hands are really becoming deformed i thought the meds were supposed to stop that. i looked at my hand and the index finger is turned all the way to the left the nail is facing my other fingers on my right hand. he apologized right away because he saw it hurt me to hear it but in all honesty i thought so to that the meds would stop that but for me it hasnt

02/12/2011 03:50 PM
kvnj
kvnj  
Posts: 3907
Group Leader

Cella, that's one of my all time favorite songs.. This disease is so scary and frustrating. I thought for a while I was doing so much better, but lately I've been having so much pain. That type where you get one of those REALLY intense sharp pains ( on top of the general pain/ache that's already there) that makes you scream out suddenly.

Tired of the limping, the braces, the inability to turn and grip things, the exhaustion, the loss of what I used to be able to do. I took it for granted that I'd always be active ( digging and planting my own 6ft arborvitaes, mowing lawn, gardening, up and down steps 800 times a day...) and never once thought that it would change. That is still so hard for me to accept, especially when the same things are expected of me.

May we all find some peace within ourselves to deal better with this horrid disease, and the others that we have.


02/12/2011 04:52 PM
bits
bits  
Posts: 10865
VIP Member

I just finished crying...well still am. I am so tired. It's been a long time now. Doc called and said blood test showed high white cell count as well as urine culture. I have another UTI and must start the Genomicin shots. Damn, I just finished 3 a few weeks ago. Still waiting on cat scan results, but I really think it is scar tissue.

The reason I cried is because I took a peek at what plays are scheduled for this year. I miss the theather.

I am afraid to buy tickets because more than likely I won't be able to go. Hey, I am not being overly dramatic here, the truth is I can not pick my good days. And they are becoming fewer and fewer.

I always took my grandkids to the Ballet to see "The Nut Cracker", etc. But for the past few years. I haven't been able to. That means Hannah and Kayden have not seen it...yet. I am thankful Zach and Josh had a chance to see such beauty. It is something magical to see through a child's eyes as they become entranced with every move.

Zach loves the theater. I wanted to take him to see "Lord Of The Dance" next week but am afraid to buy the tickets.

Friday evening I wrote a list of ingredients to because I had, in my mind, to prepare this wonderful meal for Sunday. Th menu: Roast Minted Lamb, Loaded Potato Cakes, Cornbread Salad, and Strawberry Cake (Paula Deen).

Really easy and I thought I would do half Sat and finish Sunday. I had to stop halfway through writing the list and rest. Made me think how in the world am I going to do it?

I did not feel like shopping for ingredients after cat scan, so, no starting today. I could have sent Chuck but for some reason I wanted to go. ??? I think every now and then I push against the walls to see if they give. Somwtimes they do. But not this time.

I accept not being able to work outside of home, missing social events, needing help around house, rarely at church, and many more limitations. I, however, have had a rough time acepting life as it is since remission left.

It really seems I am emotionally reacting closely to how I reacted when first dxed with RA. I went through a period of many emotions for about 1-1.5 years then finally settled down and was at peace.

I am thinking, this is what is happening again....getting used to the idea I have RA. I think I am going through all the emotions of "grief" as I did before. Although, I do not have the fear I had the first time, I do have the heart-break of finding myself back to square 1 after remission.

Now, for something good...

I did make a Carmal Pie last night for Cassie's mom as a gift for her move to a new home. The crust is chocolate, I sprinkled toasted pecans and mini choc morsels on the bottom, then filled the crust with beautiful, luscious, rich, velevety, and soooo yummy, deep golden brown carmal filling. After topping it with mounds of cool whip I sprinkled the last of mini choclates and toated pecans on top. This is a really beautiful pie, tasty, and triple easy to make. People think you spend hours on it but didn't.

When I finished, I felt satisfied. I had created art (in my eyes) and my heart was singing. I came back to my room, sat down, looked over at Hannah and Kayden asleep in my bed and for countless moments...all was right in the world.

Moments. Life is nothing more than moments. I am blessed with many of these beautiful moments. Thank you Lord, there was a time I would never have noticed and felt such pure joy.

Hugs


02/12/2011 06:12 PM
jlacy46
jlacy46  
Posts: 288
Member

if i can look at all the moments that are pure and beautiful like even when i cant hold my grandson i still can look at his smiling face and talke to him while some one else holds him and even though i can not really cook much any more i can watch my daughter teach my grandaughter. sometimes though it is so hard through all the pain swelling dr appt and fighting with the job i have to see these momments i personally need to work on just learning to look and see the beautiful moments and not focus on the other quit so much i have cried till i have no more energy or tears left to cry and i didnt have much energy to start with

02/12/2011 06:55 PM
PauleR
PauleR  
Posts: 1817
Group Leader

I too have been having problems accepting my limitations. My RA is not even really bad, compared to others here, but I have had to accept that if I have more bad flares, I could lose my independence. I think I'm finally facing this disease, after almost 1 1/2 years. I guess denial helped me at first and the cruel reality has hit me pretty bad.

It really helps to have this forum and the support of so many. I don't like to go on about this to my family. I am the one who is strong, you know? Anyway, thanks to everyone.


02/12/2011 07:04 PM
kvnj
kvnj  
Posts: 3907
Group Leader

Paulette, I think that's the part that scares me the most... losing my independence. I am so scared that I will end up in a wheelchair, for many reasons. Currently I am the main breadwinner so my salary and benefits are a necessity, also I am afraid that I will have no one to take care of me. My spouse isn't exactly a nurturing person ( ie: had bad chest pain a few weeks ago and although he wasn't working, I drove myself to the ER..). That I would have to rely on someone else for my care terrifies me. I don't want to be a burden to anyone.

Yes, I am the strong one, and the one everyone turns to for help. How do you ask others for help when they are so reliant upon you? (rhetorical question).


02/12/2011 08:37 PM
bits
bits  
Posts: 10865
VIP Member

When I became sick, several months before dx, I knew somehow life would never be the same.

While well enough, I began making plans. Plans to help me. And hubby not being the total caregiver. Plans to help us still have good life.

First thing I did was talk to my son Michael and his beautiful wife Cassie. Cassie is a stay at home mom with 2 children. She loves staying home. And she loves me as I do her.

Chuck and I offered to give them 1.5 acres of our land, finance all improvements, and buy a nice used mobile home in excahnge for helping us as we need. They loved the idea.

Although, the land was given, they paid back all other expenses within 4 years. Because we didn't charge any finance it was easy for them. They paid once a year with income tax money and now own property.

Cassie did not have driving license, so I taught her how to drive and she did get them. Within months, I could no longer drive. Now, we have deal...she keeps my car and uses it for errands but she is available to take me where I want to go. We split the upkeep cost on car. See, I still feel some independence because it is MY car and I don't have to depend on hubby to always take me places.

BTW...her home is only 5oo yards down my driveway so we are very close, yet, have privacy because of the little forrest between us. In fact, we are planning to make a Secret Garden between our property.

When I need Cassie to deep clean weekly I would pay her the same as any cleaner. However, she did many things througout the week such as cooking us some meals, making our beds, and shopping/putting away things.

Hubby bought me a golfcart just so I could drive around our property or just drive down the driveway to Cassie's or mailbox. Honey, I am a wild child on that thing. But, you see, now I can go everywhere on my property that without the golfcart I was stuck just looking around.

When Chuck would go to work (he still does sometimes) she would check on me may times till he was home. Bless her heart, there have been many times she has had to put meds on my tongue because my hands wouldn't work enough for me to pick them up.

She, also takes care of our animals (2 dogs, 2 cats) when we go away.

I, also, began simplifing my life by getting rid of alot of things in the home, making it easier to clean and get around in my wheelchair. We bought a comfy recliner fo bedroom and living room. I bought tools and gadgets to help me. I arranged kitchen cabinet things like seasonings, dishes, pots/pans, foods, in more accessible reach.

I went to our attorney and he drew up papers, which I signed, and my family were aware of, that if I ever get sick enough (any reason) and am not expected to really become well again, then I want to die. Nothing to keep me alive, except pain meds and water to ease me through the journey. This way my family does not have to make the decision for any of it, though they know my wishes. I give them peace from my having it prepared.

Any chronic disease is hard. All we can do is the best we can. For me,it was planning when I could because I don't know if I could do the same thing today. And let me tell you, before becoming sick I was never a planner. It was like I grew this backbone of determination that pushed me onward to do all possible for what was coming. I am so thankful I had alot of ducks in a row before RA hit me hard.

God bless all of you. Even if you become more limited you will find many ways to maintain some independence.

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