Hope for MCTD/IPF

[sjess]

Not feeling well today. Sick to my stomach. Very tired. Hard to breathe. Feeling down. Hard to concentrate. Flustered about my weight. I've always controlled my weight by exercising and now that I can't exercise, I feel totally out of control.

Had my hair colored today. Didn't do much other than that.

[sjess]

Still very little ambition, but I did work for about 4 hours on my genealogy yesterday and am upstairs right now ready to work on it some more. That's more than I've been able to do lately.

I realized today that the prednisone may have been affecting my eating impulses and that could be part of my weight problem. I felt a little redeemed when I realized that. Now that I have been off the prednisone for a couple of weeks, hopefully those compulsions will go away and I will be able to eat only what my body requires instead of everything it wants! Have changed to Diet Coke and only have a Mt. Dew when I'm really craving it; this is a big improvement.

I continue to struggle with depressed thinking as in, “why keep going?” or “it's all too much for me”. I'm not suicidal, just very worn down. I try not to think about it too much. This genealogy project is a great help. I really am enjoying it. It's like a treasure hunt to me. Fun adventure. Glad I got myself going on this. Now I gotta see if I can scan and import pics into Family Tree Maker from my printer with my laptop. If not, will purchase some software to do it, like Photoshop or the like.

Have a slight sore on my right temple. Am trying not to pick at it but it is a little itchy. Took some Darvocet today for my back and am a little loopy from it.

I think this genealogy is going to be a fun thing to give to my family. 🙂  Whether or not they like it, I'm enjoying it!

 

[sjess]

Got a new appt. with Dr. S today for Feb 15th…yay!

I worked some more today on genealogy. That is pretty fun. It is giving me something to think about other than waiting for my appt. or how much I weigh or what all I'm not able to do or what I look like/smell like.

Found out today that one of my ancestors was born in Ireland. I had never heard that. I knew I was German, Swedish and English, but not Irish. Ancestors on my mother's side were Ohlsson. Just about everyone on the ship manifest to America from Sweden were Ohlssons! Must be a very common name.

I feel guilty that I'm not exercising Goldie enough. Steve takes her out when he goes out, but she doesn't really get a good walk in.

My cannula is really bothering my nose. Guess I'll try changing it to see if that helps.

Watched a show on brain fitness last night. Basically said to exercise and learn something new to increase the number of neurons and brain connections. I fell asleep watching it. 🙂

Well, two weeks to go.

Later…

I answered a person on the GD side who was hurting and in writing my response I reminded myself of some things I can do to feel better. Ironic.

[sjess]

More genealogy today.

More waiting…

tic toc tic toc

Will AP really help me? I've been sick for so long.

tic toc tic toc

Wish my parents were still here.

tic toc tic toc

[sjess]

Went to DM today with Steve. Good to get out, but am now paying the price. I'm worn out, but can't fall asleep, my jaw and hip joints are aching and other joints are minorly sore, I'm chilled and can't get warm. Is it worth it? :sick:

I spent the last of my Christmas money on scrapbooking supplies. With the genealogy work I've been doing, I'm about ready to start putting a heritage scrapbook together. It was fun to get some new things, but what a price. Gee whiz! :X

I just am keeping what I've read here about the improvements people have had in mind so as not to give up. I am getting better at accepting things. Like accepting that the house isn't going to be perfect and the like, accepting that things are not yet completed and learning to be okay with that. Getting things done has always been a driving force for me. Can't be that way anymore.

I hope I am not causing anyone distress with my journal. I'm just using this space to vent. There's nothing can be said or done, just wait and hope. I can't put on a cheerful face anymore, not in my space. I've kept my thoughts and feelings hidden for the most part until now, I really need to let them out now.

Steve said today that I'm tougher than him. Wow. That made me feel good 'cause I don't think of myself that way. It was nice to hear.

I am really dry. My skin is dry, eyes are dry, nose is dry and allergies are really bothering my eyes and nose.

I'm just rambling now so I guess I'll quit for tonight.

[sjess]

Had a fun day today. I wasn't able to do much physically, so I got things set up so I could type onto my computer the letters my father sent home while he served in WW2. He was drafted during the latter part of the war and did not see any fighting action. In fact, he spent the majority of his time driving top brass around on Hawaii. “It was a tough job,” he would say, “but somebody had to do it.” He was the light of my life. Typing up his letters is a little like being with him again. I think it will make for a fun read for family and friends. I'm planning on making it into a book with maps, illustrations, and photos. I'm really glad I started this project. It is helping to pass the time and lift my spirits a bit.

I decided to check amazon.com for any new scrapbooking gadgets and I found a new device by Xyron called a Creatopia. It will do embossing, laminating, cutting, and application of adhesive onto scrapbook pages. Decided I had to have it. I like to get things that add to a scrapbook without taking too much away from the pictures. I feel the items added to a page should enhance and bring out the pictures, not detract from the pic or call attention to themselves. I've seen many pages where the pic is the last thing you notice. I'm going for a different look.

The deer are finding things in our front yard to nibble on. There were two fawns here the other day and tonight there were five deer–three fawns and two adults. This is the closest I've seen them come to the house. Luckily I was able to snap a photo of one. Of course, Goldie does not welcome their visits as much as I do, and she is vocal about how she feels about the unwelcome intrusion into her territory. I don't mind though. I appreciate her guard-dog demonstrations. When Steve worked at night I was so thankful to have her growl and bark at suspicious sounds.

My new word processing software should arrive tomorrow; I am looking forward to that. And my Creatopia should arrive Monday. It helps having things to look forward to. Am looking forward to getting better through AP, but am afraid to count on it. Right now I'm just hoping, and I'm not getting too excited either. Have had too many let-downs. I don't buy the, “you gotta believe” talk. I think it will either work or it won't. I think a person has to give it a fair shot, give it a reasonable period of time. From what I have read so far on this site, it takes a month or so to notice small improvements and a good 2.5 years to see victory if it's going to happen. I'm willing to give AP that.

Anyway, enough of the philosophy for now!

One day closer…

[sjess]

Karen came today and I got a bath. Boy do I smell better. Don't know how she stands to do that job, but thank God she does. What a blessing.

Had another pretty good day today. Been doing more genealogy research. I really enjoy doing that. I was going to do some recording of me singing, but forgot my iPod when I went upstairs. I love those commercials where people have a chair attached to the wall that carries them upstairs. It is tough getting up and down the stairs. Hope I will be able to continue to get up there. I've spent many years fixing things up up there so I can have a place to do my hobbies. Would be ironic to then not be able to get up there.

Need to make a tape of my singing for a couple of people. Also need to practice for singing at the nursing home the end of this month. I'm so grateful I can still sing. Karen told me a friend of hers was going to go to the nursing home today because “that Jessen girl” (me) was supposed to be singing. (She had her dates mixed up.) That sure made me smile! :blush:

Steve noticed today how short of breath I got walking a short distance. He asked me about it. I told him that's how I've been. All of a sudden the rim of his eyes got red. He may not buy me anything for Valentine's Day, but that was probably the best gift ever to let me know he loves me.

[sjess]

My back is really a mess. I've been considering going to my GP, but what if I gotta have tests done, etc. I don't want to get worn out before I go to see Dr. S. I think I'm going to wait until after my appt. on Feb 15th. I really struggled getting down the stairs after working upstairs on genealogy. I need to get up and walk around every so often when I'm working on the computer so my back doesn't freeze up like that.

Have an appt. tomorrow morning and then Goldie has appt. in the afternoon to be groomed. I really need to get groceries. Maybe I'll do that while she's getting groomed if I'm able.

Did some singing and recording today. Got a couple good takes, but not quite good enough. Will keep trying.

The deer keep coming back to our front yard. It is so fun to look out the front window and see them munching away. We had 12 the other day and I think there were about 6 tonight. Karen said in town one was laying under someone's tree like it was a dog!

One more week until see AP doc. Gotta do some more gathering of info and p/o some maps on how to get there. Feel so disoriented sometimes, like I lose track of what day it is and what I need to get done. I suppose this is part of the brain fog. Hope that goes away too…or maybe I'm just getting old, or it could be low oxygen I suppose. Either way, I hope that improves.

[sjess]

Slept most of the day. Was very tired. Back sore again so I took some Darvocet. That seems to be helping.

I read a post today on this site where another gal has had scabbing problems in her nose. I was really glad to read that since I struggle right now with the same issue. Sounds like the antibiotics cleared it up. I saw an ENT about it and he gave me an antibiotic nose cream to put in and I did that for a couple of weeks like I was instructed but it didn't go away. It has been concerning me, so it was good to read the post.

Less than a week to go before I see Dr. S. Am getting a little apprehensive about having everything I need rounded up and written down. I don't, so I need to get to working on that. I tend to work better under pressure (ie I procrastinate), so now that it is approaching, I should be able to get things done.

We here in Iowa have been having snowstorms on Mondays like clockwork. Hope we don't have one this coming Monday!

I thought today that if I get to feeling better, I'd like to join the women's crafting group that meets in town on every other Saturday (I thing that's when they meet). And it would be great to be able to play tennis again, or at least be able to hit some balls around.

My tongue turning pink again really has cheered me up. It's a victory. It's something going my way. It's something good and healthy. When I think of how thickly coated my tongue was with that white icky stuff that I could not get rid of, it seems miraculous that it is so nice and unashamedly pink. 😀

I'm barely able to keep eyes open, so time for bed. Nite.

[sjess]

Went through the mail today. So glad to get that done. I had planned on working on my papers for Dr. S, but I've learned that it works best if I do what I'm interested in doing. It goes much better. I was afraid I had neglected to pay bills that were due, but I hadn't thank goodness. I can understand now how the elderly sometimes forget to pay their bills.

Della was here today. It just occurred to me today how she just feels like she belongs here and not like someone who is working for me. I appreciate her housecleaning and cooking abilities so much. She said she loves working here, it's her favorite job. I'm so glad to hear that 'cause I really need her right now. Even if I get better, I could still use her help for a while until I get caught up on things.

I've been putting a pillow behind my back when I sit in the recliner and that seems to be helping. Our recliners are older and a bit broken down. We really could use some new ones.

Only three more days until I see Dr. S!

[sjess]

Have been feeling better mentally, but am weak physically today and short of breath. I go see Dr. S tomorrow. Unfortunately, they are predicting snow and windy conditions. Thankfully Steve is going to take me in the pickup.

I've been waiting for my appt. for so long, it's hard to believe I go see him tomorrow! I think I've got everything I need for my appt. Just need to input Dr. S phone number in my cell. I've got my records and an overview of my treatment, maps, a list of my prescriptions, and my digital camera. 😀

Hope I'm feeling okay to go tomorrow. My back is still a mess, so I'm thinking of taking my canes just in case. We'll leave at around 7:30am, hopefully that will get us there in time.

I think the best thing I can do is relax today, maybe watch some movies so I'm good to go tomorrow. I really want to get going on my scrapbooking project, but I think it would be best to wait until after my appt. to start in on that.

[sjess]

Am so bummed. It's hard to write. I was supposed to go see the doctor today and we tried to go, but there was a bad snowstorm/blizzard and we couldn't make it. 🙁 This is pretty much how I look right now.

Feel like there is a heaviness around me. I suppose it is disappointment. I'll be okay, just gotta get over the sadness and make another appt.

Hope maybe I can get in next Monday, although hubby saw another prediction of snow for next weekend too! Good grief!

I think that is all I'll write for tonight.

Goodnight.

[sjess]

I'm feeling better. Della was here today. She is becoming invaluable to me. She cooks and cleans so that I can just rest and not worry. And she is pleasant to be around.

I think now I might be ready to try changing some things in my life. With Della such a big help and now knowing what direction I want to go with my life (personal historian), and not worrying so much about the house ('cause I just can't do much about it right now), I feel freed up to work on improving my health. I know it should be a higher priority, but that's the way my mind is working right now.

I've decided to go get massages instead of seeing the chiropractor about my back. I really think the main problem is the muscles. And I've worked out a menu for myself that will hopefully make me feel good and be healthier.

Brkfst: Carrot/apple juice
Lunch: meal w/ chicken breast or fish and vege
Supper: plain yogurt w/ fruit
Have grapes or other fruit for snacks.

I have been eating very poorly. It's time to make a change. I always go through withdrawal from pop and sugar. Might have to make the transition gradually, but I feel a major change is in order.

I was going to wait to make these changes until after I saw Dr. S and started feeling better, but since I've been prevented from seeing him by the weather, I think I will start this in the interim.

Oh, and Iill do exercises on the NuStep start very slowly (5 min 2x/day) and work up from there. I think I'll try to be better at hygiene, and add daily sinus cleansing.

I got the Power Healing book today and plan to read that. I think I'm finally getting it that my diet plays a part in my health…duh :headbang:

Specially thankful for Sir Rifes a lot, for his friendship and inspiration, and thankful for the people here who have inspired me to be more proactive in getting better. Thanks to you all! :blush:

God Bless

[sjess]

Worked on singing most of the day. Slept some too. Hubby was gone all day. It's harder for me to get motivated when he is gone. I got some songs picked out and downloaded the accompaniment track. So many depressing songs about unhappy marriages. I tried to pick out some that were upbeat…not an easy task when you are dealing with country music!

I haven't gotten up the gumption to call for a reschedule of my appt. Afraid we might have a tornado go through or something! Third time's the charm, right? Hopefully, anyway. 😉

I should have tried exercising today! Didn't even think of it. Will try to get at least 5 min. in tomorrow. That ain't much, but it's a start.

Saw an interesting show tonight called Surrogates. People hooked into a computer network and layed in their homes while these perfect looking surrogate robots they were hooked up to represented them in the “real world”. The show brought up some interesting points.

Have an itchy rash on both forearms tonight and had it last night too. Wonder what's causing that? 😕

Time to take my pills, so I'll close for now.

[sjess]

Things are pretty tense over on the other side regarding a post. I guess I'll stay out of it 'cause I don't know what was said. I do understand the board's point regarding the need to keep posters from making claims about how a person can be healed.

Well, I couldn't take the back pain anymore and so I made an appt. to see the chiropractor. I went today and am feeling a little better. The muscles seem to be a little more relaxed.

I don't think my hubby is as enthusiastic about AP as I am. He referred to it sarcastically as “waving a magic wand”. I'm not really sure how to take that. I think his opinion is that there is no cure-all that will make everything all better. His reluctance about the treatment is affecting me and making it harder to push forward. Maybe I get my back healed up and not in pain with that anymore and I'll feel more like pursuing this treatment by getting another appt. Right now it just seems like too much.

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