Karen's First Nine Months
Scleroderma (diffuse) shook my world to it’s foundation in every single aspect of my life as I knew it.
I’m a girlie girl. I love my make-up, high heels and my business suits, my manicures and pedicures. I love working out with weights and I love looking sexy for my husband so this has been one hell of an experience.
What do I miss besides pretty hands and high heels? I miss being able to pick up my grandchildren or my animals, sleep without waking up every 45 minutes from pain, get up and down from the floor by myself, write legibly, take the gas cap off to pump my gas, squeeze a tube of toothpaste, open a water bottle/jar/door, carry the groceries, have the strength to pull my pants up or take a top off over my head by myself, fluff the feather mattress, pull the sheet down over the mattress, pull the covers tight when making the bed (hell, who am I kidding - half the time it doesn‘t get made), lift wet laundry out of the washing machine, do my personal filing, lift a pot off the stove, help tie our boat up, vacuum without it feeling like a spent 2 hours in the gym, carry a heavy book, get up from the dinner table without being lifted up, pick something up off the floor, my size 6 ½ feet that morphed into a size 8 (not that it matters anyway because I haven’t been able to wear a closed toe shoe), walk more than two minutes without excruciating pain (that’s on the days I can walk), put my make-up on with my right hand, wash and curl my hair by myself - but most of all I miss seeing my family and friends looking carefree and not concerned when we‘re together…
That’s how I felt when I started Dusty’s treatment program, and this is the first 9 months journey of my treatment. It hasn’t been easy but it’s been more than worth it. I’m now at the half way mark.
Friday, November 5, 2004
Pain is still in the other areas plus spreading - and in the joints, not the muscle. The back of the knuckles are red and inflamed on my hands and the ankles on the inside are, also. The shoulder pain goes away after I've been up and moving around for a couple of hours. The elbows (goes away), too, unless I lean on them or touch them. Yesterday when I woke up I could feel a little of the back of the hands feeling like they were on fire but it went away as soon as I got out of bed. The feet are swollen on the top where the toes meet the foot, but the ankles aren't. AND I am drinking plenty of water - the 2 cups of hot water first thing in the morning - another cup with the pills, another cup with the shake with the iodine and then with the digestive aid, then more throughout the day and at least two cups again at night to take all the rest of the stuff. I am water logged!
This isn't new to me - this is exactly what was happening when I was off the prednisone or reducing the dosage before. I am still on 5mg - I had reduced from 7.5 a few days before seeing Kim and Angela. None of this scares me, I still have pain in the hands and sausage like fingers and it has moved to include my elbows and my shoulders. I can handle it fine.
The castor oil pack is quite the production but it feels good once I'm finally lying down with it.
Tuesday, January 4, 2005
Scott really wants to go on our honeymoon that’s already paid for. I emailed Kim the dates and she replied:
“have been thinking about your vacation. You might want to postpone it until late summer or fall. You are so early on in the program that I don't know if it's a good idea to have you away from home. It's critical right now to have plenty of rest and that you eat correctly. You are going to be doing a lot of detoxing between now and then. We can muscle check on it when you are here. Make sure to write it down on your monthly analysis sheet so we don't forget. Yes, this is scleroderma boot camp!!! LOL :)
I had an upset stomach calling Scott to tell him this because he is so stressed out and hasn't had a real vacation for 2 1/2 years and he keeps saying "we need a vacation!" every week. I haven't had one for probably 4 years BUT he was so sweet about it. I read him her e-mail and he was just great. He said "you know, your cure is the most important thing and for some reason I wasn't getting a warm fuzzy about Maui and I'm usually so excited to go to Hawaii. We'll just take some 3 day trips somewhere at the last minute so we can plan it around how you're feeling. Don't worry about it. Don't stress Kim out about this either". LOL Did I marry the right guy or what?
My shoulders, arms and wrists are about a level 7 every morning. It gets better through the day. I'm thankful my feet aren't so bad now though. At least I can swing myself out of the bed without the lower half killing me off!
Thursday, January 6, 2005
Big mistake having Bruno *my massage therapist) work on my feet. I can’t walk more than a couple of feet because my feet are in so much pain. Well, I won’t be worrying about “only 3 days in the office per week“ mandate. I only made It in on Tuesday this week! Still have that headache - took two more pills.
I’m very cranky when I don’t feel good and I wish I wasn’t like that. My feet aren’t very swollen, the right not at all and the left only where the toes meet on the top but pain is on the bottom of my feet.
my bicep muscles) Fingers are swollen on both hands but only hurt a little on the right hand. I am sooooo tired though.
I’m feeling a little depressed. I know it’s just because I am stopped in my tracks. I want to be cleaning house or cleaning out drawers but I can’t bend like I need to do that. I could barely get myself out of the bathtub last night. I had to turn over on all fours to be able to get out. I’m sure that was a wonderful site to behold!
Actually feeling a lot better in the evening except for the flu-like symptoms. Still no energy but way less pain.
Sunday, January 9, 2005
Oh boy - here we are still - knees hurt, wrists hurt and fingers on both hands are swollen and achy. I have been a couch potato for three days now. Wonder why this is taking so long. I need to wash my hair this morning. I have been putting it off - should have done it last night when I was feeling a lot better. Maybe this is just morning stiffness and will go away when I shower. It’s hard to get up from a sitting position - have to use my hands for stability. The weather is rainy and depressing. I want to be out and about. (Besides I have garbage to take down two flights of stairs - maybe I’ll just leave it for Scott-lol.) The headache is finally gone.
Monday, January 11, 2005
I feel better but definitely not where I would like to be. Wrists and hands hurt every morning and the tops of my knees hurt a lot, plus the muscle on my left leg which has hurt off and on for months. Swelling is good though.
Sunday, January 17,2005 - Friday, January 22, 2005
On Sunday we went to Angel's Camp to see the girls for the final time that graduated from Dusty's 18 month program. They were all doing really well-no pain, no walking issues, no facial issues. I was having a lot of pain that day in my feet and my knees and my wrists and my shoulders. The girls all assured me this was what happened to them. Susan said she would get herself just so in her bed where she felt like she could stand it and then she would move and feel so much pain. She said she wanted to chuck it all and tell Dusty to forget it but she stressed to me to just hang on because it will get better and I'll get to the other side of this. I guess I must have glossed over the pain part because all I had in my brain was being sick and exhausted. My dad said she did tell me pain was part of it - it's probably a good thing I didn't know that. I'm still detoxing from silicone, chemicals, mold and insecticides right now.
Monday, January 24 - Friday, January 28, 2005
Pain, pain, pain and more pain! I can’t do anything without it taking forever and hurting like hell. I am exhausted when all I’ve managed to do is take a shower and get dressed.
Sunday, January 30, 2005
I have been sleeping on the couch because the bed is so soft with our featherbed and down pillows and down blanket. I would get wedged in and couldn’t turn or get out of bed. I moved back to the bed and Scott gets up in the middle of the night and sits me up and gets me off the bed if I need to go to the bathroom. Bless his heart, he does it with no complaints.
and I couldn’t put my makeup on. And I struggle so much with the shower cap and if something falls on the floor I just want to scream in frustration because I can’t pick it up without a lot pain.
Sunday, February 13, 2005
Had my treatment on Friday. It turns out the prednisone was masking 95% of my pain so it's no wonder I felt like I was dying. The pain I'm feeling now is mostly because I'm back to that problem of the toxins recirculating in my body instead of going out of my body. We did a lot of work on Friday. I was in so much pain Scott had to lift me up each stair.
I went to the MD also and I had muscle checked for this drug so he gave me a nonsteroidal anti-inflammatory with pain masking properties - Naproxyn. I also have edema in both feet/ankles/lower legs. THANK GOD (and all those prayers) because it has taken away 50% of my pain. I finally slept all night only waking up twice instead of every hour. AND I could go to the bathroom and get out of bed by myself! I also went to the lab to get my blood drawn so we'll see what happens then. The MD said that sometimes if you are on prednisone for as little as three months some people's bodies are really slow to build it back up by itself. Even though I still have pain it is nothing like what it was.
For me, just the fact that I feel human again is such a blessing. I was able to scrub the shower and do all the laundry and stand at the sink and wash dishes. I know - it's weird I was happy about that!
I finally feel hope again. I was really losing hope for a couple of weeks.
Monday, February 14, 2005
Whew hooooo - blood test results back. ANA down and titer count cut in half. Better be some good reason for all this miserable pain and no high heels. It’s working!
Saturday, February 19, 2005
Scott bought me a battery operated scooter. LOL He was so excited and I was too - although I was thinking “oh no, handicapped looking for sure”. It’s actually quite fun and goes about the speed of a slow jog. Sure does make a difference going down the long dock to get to our boat on the weekends.
Thursday, March 10, 2005
Feet and ankles are really swollen and left hand and wrist is bad too - have been for a couple of weeks. Can’t close my hands either. Okay, only a year to go. I can make it through this. Bathing suits fit great and look great from far away - up close it looks like everything is sliding south.
Friday, April 8, 2005
Treatment day. Monitors are down, Kim and Angela say I look healthier and Kim says I have a “feistiness” about me she hasn’t seen before.
I am feeling pretty good emotionally surprisingly. Wrists/ankles/shoulders hurt. Was taking a shower and inhaled a bunch of liquid soap into the back of my throat. Coughing like crazy.
Tuesday, April 12, 2005
Ore throat - slept AWFUL. Lots of pain while sleeping. Spoke with Kim this morning
Wednesday, April 13, 2005
So sad/depressed today. Cried this morning. Sore throat moving into head cold. Seems like I am at the edge today. The cold is putting me over the edge? Had a massage and cried after the massage, cried at my salon while getting my hair washed and sobbed at night. There are so many things to do that I can’t do because my wrists hurt so bad. I have laundry piling up, and house cleaning, I need to be in the office, I need to clean out my closet, I need to get the pictures out of the camera, I need to list all three cars. I am so tired and have no energy.
Today was a really bad day - I don’t remember being this upset about this whole process before. Took napersin around midnite so I could be useful tomorrow.
Friday, April 15, 2005 - Thursday, April 21, 2005
Went to the boat over the weekend. Coughed so hard on Saturday I thought Scott was going to have to take me to the hospital. Ended up with the dry heaves. Took zinc lozenges and used sign language all day because every time I talked I started coughing again. Sunday I lost my voice and sounded like a squeaky mouse - actually, until Thursday I was squeaking. Felt terrible physically (with pain) on Saturday. Laid on the couch all day
Felt better physically otherwise though on Sunday - only wrists (painful and absolutely zero strength!) and ankles hurt like hell. Still can’t sit too long or get locked into the position by my knees and it’s really hard to get up.
Sleeping better through the night - only wake up around 5 times a night instead of at least 10. Right shoulder just kills me when I’m sleeping but doesn’t bother me during the day unless I try to pick something up - like my purse - lol.
I knelt down on my haunches (without thinking) and heard all these “pops” in my knees and legs. I don’t know what possessed me to think I could squat. I have been having to bend over from the waist for over a year to get something off the floor. I cannot describe the pain that caused, although it must have looked pretty funny as I realized I could not sit back on my derriere and I could not get up, all the while saying “shit, shit, shit, shit” how am I going to get up. I finally grabbed the front door knob and prayed for strength to get up. I do not want to repeat that scene again! I told Scott I would like him to stand behind me and slowly lower me down to the ground several times as an exercise so I can stay a teensie bit limber.
Friday, April 22 - Thursday, April 28, 2005
Went through a huge mental change in a good way. Felt good enough that I Decided on Friday, April 22nd that we have to get into a house. I’m looking to the future now because I know this is working and I know I am being cured. I spent all day Friday and Saturday looking at homes. I was embarrassed but said the hell with it - let them watch me shuffle. Scott came home Sunday at noon to go look at the best of what I had seen. We would walk into a two story place and he would say “how did the upstairs look?” and I had to tell him I didn’t go up the stairs! My feet were SOOOOOO swollen every day from being on them all day since Wednesday. It’s probably the most exercise I’ve done for months. In and out of the car - walk, walk, walk. BUT I did it and I’m darned proud of myself, too.
Scott found a house! We were so BLESSED - Scott saw the sign yesterday and he called the realtor and she met us in the afternoon. The home had been on the market since Thursday (6 days) - they had two other offers but we got it! I’m so excited. I know I’ve turned the corner and I can look forward.
My fingers look much better - all ten of them look normal from the fingertip to the middle knuckle.
Sunday and Monday, May 29 & 30, 2005
Wow - felt great. Especially on Memorial Day. I could navigate the steps on the boat and serve people from the minute I got out of bed. I feel “normal” almost. My ankles are not swollen, neither are my hands. I AM GETTING CURED!
As a footnote -
I have learned a lot on this journey so far. The disease has humbled me. I have much more patience for people who cannot move as fast as the young and the healthy. I have been forced to stop doing and going and being with no thought to where spirituality was fitting in my life. I was in control and charging forward on the merry-go-round of life. I was on the fast track in a sales career making more money than I ever expected, and I had no down time until my body forced me down. I have realized that there has to be a balance for the body and the mind to be functioning at it’s optimum capacity - to be able to stay (or become) healthy. I have learned to replace negative thoughts with positive ones. I have to say that it has only been the last two months where I could feel a total shift in my healing and my mind and my spiritual side. It was quite something getting to this place. I feel so hopeful and positive about my future.
And, if there is one word to describe what I feel at this juncture, it would be GRATEFUL. I have journeyed every once in a while to a message board or chat room about Scleroderma and have left them in tears because others aren’t lucky enough to know about Dusty’s Place. I’m grateful Kim has not given up helping others and that Angela is such a gifted naturopath. I’m grateful to having such wonderful family and friends, and especially my husband who never complains but is always concerned, and my father, step-mother, and my daughter whose love is a constant.