Hope for MCTD/IPF

[sjess]

Day 81

Had my last physical therapy on my hip today. I bought an infrared heating pad since I have read so much about infrared on this site. It seems to be helping quite a bit, so I felt I could forgo the PT.

After my session, I ran across two other ladies in the waiting room who were on oxygen. I didn't know either of them, but we became instantly acquainted talking about life on oxygen. I was thrilled when one of the ladies said she hated having to gather up the oxygen to go out. How it was so much easier to stay home. I laughed and said, “Yes! I'm the same way.” Then the other complained about the hose when she was home and how it catches on everything. Both the other lady and I groaned to that remark. I swear that hose has some sort of adhesive on it the way it gets caught on everything!

I told my hubby about the encounter with the other women and he said it sounded like the old ladies having a bit** session. I told him, “No, that's what you call a support group.”  :roll-laugh:   It really was wonderful to hear that others have the same troubles and gripes as I do. I didn't feel quite so bad about myself after that!

Have felt strange today. I feel like I can barely keep my eyes open. I don't really feel fatigued, just like my eyes want to close. Kinda strange. Think I'll hit the hay early tonight.

Went to some garage sales on my own. That was a big accomplishment. Found a few things.

Think I'll close for now. It's hard to think and my eyes want to shut.

[sjess]

Day 82 on AP

Eyes continue to want to shut today. I slept this morning until 1pm. I got up at 9am and sat in my recliner and got my emails, then fell asleep again. I'm still feeling very sleepy. I don't know if other people do this, but with my health situation when I'm feeling so very tired, I wonder if it is time for me to die. Then I wonder if I am having a herx rxn. LOL Well, I'm sipping on Mt. Dew, so that should help wake me up. 😉 

I watched “Extraordinary Measures” last night. It is based on a true story about a father who has two children with Pompei Disease who are dying and he finds a brilliant doctor/researcher who has come up with a treatment. He works with him to get the treatment developed and approved. (I won't tell any more in case you haven't seen the movie.) This movie, like “Lorenzo's Oil” left me feeling sorta sad, wishing there were someone fighting for a treatment for my disease. Then I realized a brilliant doctor already has: Dr. Brown! And I'm taking the treatment! Unfortunately, this treatment doesn't show signs of improvement overnight like the Pompei treatment does, but people have gone before me and shown it works, so it is just a matter of time. Thanks Dr. Brown.

My back and hip are so much better. I think the infrared heating pad is really working.

Well, I think the Mt. Dew is working too. I feel a little more awake. Will try to get something done. Bye for now.

[sjess]

Day 83–or 2 months and 23 days

Not doing well at all. 🙁  Have been extremely tired and weak and very short of breath. I was getting depressed about it too, til I realized from my writing that I have been through this kind of thing before. I'm either flaring or herxing, don't know which.

I did get a few things done this afternoon. I slept all morning, then was up around 11:30am and got dinner then went upstairs and did some filing and then practiced singing. Napped for a bit, then came out to living room and ate supper and watched a movie with my honey. I need to go to sleep pretty soon. My sleeping gets kinda messed up when this happens.

It's all I can do to keep positive and not panic when I get this way. I feel like I am getting worse, but I can recall feeling this way and writing about it before and coming through it, so this isn't new. Just have to ride it out I guess. The weather is a factor. Very heavy air and stormy.

I've decided to get done the things I can do sitting down right now, like the filing and scrapbooking. I got a dvd of yoga I can do sitting in a chair, so that is something I can try too. I want to try meditation too. Now is the time to do this stuff, if I can motivate myself. I need to go to Wal-Mart tomorrow, but not sure if I will be up to it. Will find out tomorrow I guess. Wouldn't it be nice to be able to count on being able to do things again? I am preparing myself for the worst though. I may not get better and that means I may not get my projects done which I really hate.

Am I missing something. Is there some magic concoction I can take to feel better again? Looking at that statement, it looks silly. But that goes through my mind a lot. Am I doing all I can to be well? Should I try this or that? They all claim to increase your energy. Maybe if I did what they say I would be okay. Good grief! Probably the best thing I could do for myself is quit worrying about whether I should be doing something else and just relax! LOL

[sjess]

2 Months and 27 Days

Almost to the 3 month mark. Still nothing much to report. This has been a very bad week for me. Very SOB and weak and fatigued. I went to wally world on Monday and after a very short time, maybe 45 min max, I was worn out and I was riding on an electric scooter! So no big improvements, and really I wouldn't say with certainty at this stage that I have even had small improvements. I could be herxing, I suppose or just the normal ebb and flow of the disease, or the weather, yada yada yada. (It seems I am always guessing at the cause of my ailments. It is getting old.) Anyway, I do my best to remember my pills and keep up the faith that this is working.

I asked hubby about going to Ida Grove for the IVs. He said it doesn't work out with his schedule and there isn't anything to do in Ida Grove. 😉  It doesn't surprise me that he is thinking he needs to go with me. He worries so about me. If only I were good enough to do it on my own. What to do??? What to do??? 

Hmmmm, just had a thought. There are others who have gotten the IVs from their local doctors. Maybe I could call my local doctor and see if I could get the infusions here in my home town. Maybe he would be willing to work with Dr. S. I'll call him tomorrow and find out. I'll email Dr. S and see what he thinks, tell him it isn't working out for me to come up there and could I be observed by my local doctor? Hmmmmm a possibility. Will keep you posted. I know my rheumy won't give me the IVs. But my local GP might. Maybe it would be best to set up an appt and go in and talk with him about it. That sounds like a better idea. Better talk it over with hubby first. Hmmm. 🙂

Oh, I am off Ambien! Yea! Fireworks. I've wanted to get off that for quite some time. I haven't taken it for the past two days and have slept okay. Am very happy about this.

[sjess]

2 Months and 28 Days

I feel listless, don't know what to do with myself. Am too tired to be ambitious and too awake to sleep. These kind of days can be tough.

I fell asleep this morning and slept most of the a.m. hours. Then went to the salon and got my pedicure for the year. Had a nice time talking with Carolyn. Her husband has diabetes and he had to have part of his toe amputated due to a major infection. Now he has a really bad sore on the bottom of the ball of his foot and he picked the scab off it! That was a BIG no-no. She couldn't believe it. I thought about it a sec and decided, “That sounds like something I would do.” Why are we like this? They call us self-destructive and undisciplined. (I prefer artistic and eccentric. 🙂  )  We pick our scabs and eat the wrong stuff, basically we don't take care of ourselves. We know what we should do, but doing it doesn't happen.

Carolyn is very disciplined. She would never pick a scab and she would be the better off for it. What's the difference between us? Is it genetic? Is it a mindset? I wish I knew. I wish I were more like her than like her husband 'cause the things he and I do sometimes 'just don't make no sense!'

I have happy feet now, and quite lovely toenails too if I may be so bold as to say. I love the color we decided on. It's called Muddy Rose and it seems like it will go with cool or warm colors. I wanted something like that 'cause that color will be on my toenails all summer long. I decided to buy a bottle to use on my fingernails. I'll do that manicure myself.

I just feel lost and don't know what to do. There isn't much I can do. I'm beginning to realize that. I asked Della if she would be willing to pick up things for me at Wal-Mart when she goes and what would she charge. She wants $15. I talked to hubby about it, and he said he thinks I should keep doing it myself as long as possible 'cause it gets me out of the house and is something to do. That makes sense. I'll just have to really plan my trips so that I get the things I most need and want first, then take time to look around if I am still up to it. The last time I went to WM, I spent time looking at clothes and when I got done with that and was ready to get groceries and household stuff–the stuff I came there to get–I was zonked and ended up just getting some laundry soap.

This disease changes your whole life. It requires constant adaptation and most of us like things to be pretty predictable. I don't know how to think of myself, what to do with myself. It is frustrating and humiliating and scary. What ability will I lose next? How will my life change next? Will it be for the better or worse?

So I just go on the best I can, do the best I can.

[sjess]

3 Months and 5 Days on AP

Have been very fatigued and consequently discouraged for about a week now. Today I decided I've had enough of this and I got some NoDoz. If I were in pain, I would take a pain pill. Well, I'm totally fatigued, so I'm going to try taking caffeine tablets to see if I can get a little energy going. They say a single dose is just like a cup of coffee, and people drink that all the time. So I'm going to take the tablets instead of Mt. Dew (too many calories) and see if I can get out of this hibernation I am in. A gal told me antibiotics can make you tired too. I had not heard that. So maybe the mino is causing some tiredness as well? At any rate, I feel better having taken some action and trying something to help myself.

Took a bad fall a few days ago. The stool I was going to sit on scooted out from under me on a slick linoleum floor and I fell right on my behind! Thank God I didn't break my hip. I have osteoporosis from taking prednisone all those years and so falling is not a good thing for me to be doing. 😯  Doc pretty much said if I break a hip I'm dead. Hope that is an overstatement.

I might have found a gal to go with me to Ida Grove to get the IV treatments! It will depend on whether she can get the time off. I'm so excited. I told her all about how boring it will be and she's okay with it all. She's like me, I guess. She'll be okay with cable/HBO, surfing the web, reading, playing games, snoozing, the like. She is the gal who gives me a bath, so she knows how limited I am and she can even help me get dressed and even bathed if I need it. I think it will be a lot easier to bathe in a tub than in a shower. We only have a shower. Anyway, I'm keeping my fingers crossed that she can get 5 days off so we can do this and see if it helps me more. I'm still taking the mino, though sometimes it totally slips my mind and I forget to take it in the morning or I end up taking it with food. I take it with my other pills at night, so I don't forget that dose.

Told hubby it would sure be nice to have a scooter to ride down the road here. It would be nice to be able to get out and take Goldie for a walk. I have my rollator, but I'm really not in good enough shape to be doing much walking. It really scares me how out of it I am! Some walking would be good, but for a fun little outing it would be nice to have a scooter. I'm letting him think about it. He is so good with making things, maybe he can come up with something he can make for me to ride on. I would ride my 3 wheeler, but it is pretty tough to start anymore. ONe pull on the cord and I'm out of breath! An electric start would be nice. Would have to rig up a place to recharge it, but that won't be too much trouble. Anyway, I'll see what he comes up with. I know he will think about it. He's very sweet that way.

It finally quit raining here and is pretty decent weather. Normal Iowa summer: hot with a some humidity. Good weather for the corn to grow. 😀

I just feel sick about the oil gushing into the Gulf. I try not to think about it is so sickening. The people and the animals and the habitat that are being affected by this. It maddens me the most that bp is saying on commercials that they are going to stay here until they make this “right”. I say to them, there is no way to make this “right”. The right thing to do would have been to prevent or prepare for this type of disaster. Now all they can do is make compensation. Things will never be the same again in that area. They can't make right the death of the animals, the destruction of the environment or the livelihoods they have destroyed. bp thinking they can make things “right” just really disturbs me. So much for my political statement.

[sjess]

3 Months and 6 Days

I have been visiting over on the Inspire website and ran across a posting by a woman who is totally depressed. Boy could I relate to her! She said she feels like she has lost the will to live. I feel the same way. I wrote this to her and I'll write it here, I think I discovered the reason. I think we are both looking at who we are now and who we want to be and seeing such a disparity that it is totally depressing. Since we can't have the life we want, which basically is just a “normal” life without pain and crushing fatigue, we feel like life isn't worth living.

I've realized after the past several days of just relaxing and resting that I need to accept where I am at right now to get rid of that emotional pain. It is a difficult step, but I think it is the solution to the distress we feel. I started reading the book, “Living Fire: You're Will to Live”. I got it off amazon.com for my Kindle. I haven't read much in it yet, but just the introduction was reassuring and comforting. It says that our will to live is up to us.

Another thing, I thought about the scooter deal and a friend told me she might get a golf cart to get to her mailbox and back. I thought that might be an alternative for my walks with Goldie. A golf cart would be electric and it could sit outside. There is a big national golf course nearby here. Maybe I can find some used carts for sale there.

I feel a little bit more alert this morning. I took one tablet of caffeine, but that didn't really perk me up that much, so I drank a Mt. Dew too. Mt. Dew and Diet Coke only have around 50mg/12oz. The caffeine tablet has 200mg, so that's like having 4 cans of pop and I'm still not buzzing. But, at least I'm not zzzzzzzing either 🙂

Goldie turns 8 years old this weekend–as best I can tell, anyway. Her original owners didn't know exactly when she was born. I got her on 9/11/02 and they thought she was about 9 weeks old, so I counted back and that was around 7/4/02. Her birthdays make me sad 🙁  She is getting older way too fast.

Hubby is on vacation next week. Don't know what we will do. I figure it is his vacation time since I am basically on “vacation” all the time. So I want him to do things he enjoys. We have to just play it by ear. It irks me sometimes, but he hardly ever thinks of things for us to do together. If I want us to do something, I have to say so and what and when. Maybe that is just a guy thing? Growing up in my family Dad always made the plans for outings and vacations. In hubby's family it was his mother. It's amazing anybody gets along I think!

Anyway, wish you all a Happy July 4th Celebration! Enjoy! I do think I am going to have a strawberry daquiri to celebrate. Mmmmm

[sjess]

3 Months 7 Days

I didn't explain, I did go see my doctor about getting the IVs here in Guthrie Center. He won't prescribe them and watch over me. Basically the way I understood what he said, it isn't officially “approved”, so he is staying out of it. So a no-go on that one. Shoot! But I do have the possibility of my friend going with me to Ida Grove. I was thinking today that even if she could stay with me for part of the treatment, that would be great. If she can't get all 5 days off, maybe she could stay with me for 3 days or so. Will see what her schedule is like.

I've decided I want my dream house. I don't have too much stuff, I just don't have a big enough house! LOL Actually, I am serious though. I have worked on this house we live in for the past 20 years fixing it up and I have been reluctant to leave it because of all the work I've done on it, but I know now that I want to. There is the possibility we could inherit the home my mother-in-law lives in now, but that home is way smaller than the home we live in now! No, now I have decided.

I've been amazed at how when you make a decision like that things often start to line up to make it happen. My Goldie is a miracle like that and I am certain I had “divine” or “otherworldly” help in finding her. And I wanted/needed several other things and poof, there they were. So it wouldn't surprise me if this happens for me. I have no clue how because the money isn't there, but that's the fun part seeing how it all comes together.

I stayed up the other night and dreamed up what I want it to be like and even drew up a few ideas. Anyway, it is a real release to realize this. I have been really struggling trying to figure out how to fit the things I have into this house and I finally realized that's what I need. I've always been amazed at how things open up when you know what you want. If you are closed to an idea, you won't recognize opportunities that are right before your eyes. Anyway, had to share that. I feel like I can breathe more freely now!

I think part of what has been holding me back is not knowing what my future is going to be with my illness. I want a pretty big house and want to design it myself, so I think I will add an elevator in the house, just in case. The people down the road from us put one in their house. He can't walk well because of polio and so they added the elevator. I want to have three levels: basement, first and second floors, so an elevator will eliminate any troubles getting up and down stairs. And I can add handicap accessibility. I want a whole room for my bathroom with a makeup area and 3 way full length mirror and changing area and one of those sit down showers with whirlpool. Stuff like that that you have to design special.

Anyway, that's my plan. It's time to move on.

Have had a nice 4th. Hubby and I hung out here at home. I made him hot dogs and mac & cheese for supper. Can't get much more American than that 😀  I had my daquiri. Mmmm, that was good (no alcohol). Hope everyone else had a nice holiday too.

Hope all your dreams come true too! 😉

Here's my new blog on Yahoo! if you are interested. You can comment there if you like. Thanks for reading me. 🙂

http://pulse.yahoo.com/_FVPYWCRN3KFT66JON6U2BG4AXY/blog

[sjess]

3 Months 11 Days

Things are progressing toward lining up a time when I can go to Ida Grove with my friend for the IV treatments. She will request the time off that we arrange next week. I made a reservation at the Super8 for the first week of August and am contacting Dr. S to see if that week will work with him for me to come. I called and couldn't get ahold of him so I sent an email. Am anxiously awaiting his reply. Hope he isn't on vacation!

I'm not very happy with my caffeine idea. I didn't take the half a capsule that I have taken the past couple of days and I've got a headache. I don't want to get that dependent on it, so I think I'll just save the caffeine pills for days when I really need it–like I'm going somewhere and have to be able to function.

I wonder if my allergies are starting to act up. It feels like I'm having asthma symptoms.

I'm getting old and showing the age and illness of this body yet my husband still has a smile on his face for me. That is something to be grateful for. :blush:

Okay, so I didn't like my Yahoo blog every well, especially after reading hopefulmama's blog on Google. So I decided to blog on Google too. They have much prettier backgrounds to choose from. So hopefully this is my last listing of my blog site, although I'll let you know when I add a page. Hopefully this is one way I can help get the word out about AP!

http://sjess-wings.blogspot.com/

 

[sjess]

3 Months 12 Days

WooHooooooo! I'm going to Ida Grove for my first IV AP treatment. Will be going the second week of August. Have some things to line up yet, but have the major things arranged. I spoke with Dr. S today and made arrangements with him for an appt and IVs and I got my reservation changed from the first week in August to the second week. Now just need to get things arranged for oxygen and then start preparing for what to take with. Have a whole month to prepare, so that should be plenty of time. Hubby is a little shocked. I don't know why. I don't think he was quite ready for me to actually do this. Hopefully by the time August 9 comes around he will be ready. I'll have to find out if anyone else from the board is going to be there! That was so fun meeting Kathygirl.

I've been working on serenity today. Meditating on letting go of my anger and frustration and finding calm and peace in my present circumstance. I think it is helping. I feel more calm like a lake. I breathe out the pain and negative feelings that I don't want to feel. Still all the voices.

Boy am I going to have a tough time without Goldie! This will be tough. And without Steve! I rely on both of them so much. It will be difficult. Thankfully I will not be alone.

Hopefully Karen won't be totally bored to death. She didn't seem to think she would be. I am compensating her a bit for her trouble. I think we will have a good time. She doesn't mind that I am ill. She just takes it in stride. Her father was ill, so she just grew up making accommodations for people who are ill. It's like second nature to her. I tell her over and over what a blessing that is and how much I appreciate her!

So that is my good news of the day. I imagine it will be tough going, but I hope I will see some benefit from it! Please pray all goes well. I'll a little nervous after what my rheumatologist said about how I should not do any IVs. I'm trusting in Dr. S to know his stuff and that I will be safe. 

[sjess]

3 Months 13 Days

I'm really in a funk. I try to get myself motivated to do things around the house and I react so negatively. I suppose I am angry and feeling sorry for myself. Yes, that is what it is. Feeling sorry for myself. I feel like I shouldn't have to do any work 'cause I'm ill. I've pushed myself hard up to this point and now I'm tired and I just wanna sit on my bum and not have to be responsibile for anything.

Wow, that's not a very flattering image. It's an honest look at how I feel though. I don't know if I win any points for honesty; but, that's what I figure this journal is all about: being honest in the hope that it might help someone else.

Doggoneitall. It has been a rough haul though. I guess I should give myself that. And up 'til now I've pushed myself every single day. And when I wasn't pushing myself I was beating myself up for not getting anything done. But what for? It's the American Way it seems to do and go and push 'til it breaks. I feel like I finally broke. I just don't have anymore push left.

Maybe it is self preservation that is kicking in. Telling me to quit pushing myself. That I need to rest and relax. I actually felt good after my nap this afternoon and I think it was a result of me actually resting without feeling guilty and awakening without my mind going to all the things I need to get done. Just because you're sitting in a recliner doesn't mean you are relaxing. Your mind can be causing you all kinds of stress.

I need to get rid of the stress in my mind and the resentment and anger at what has happened to me. To accept where I am at now while hoping for a better tomorrow. I think meditation and journaling are my best bets for that. I love the Serenity Prayer. I think that has the answer to most problems. I go back to it again and again. God grant me the Serenity to accept the things I can not change…

[sjess]

3 Months 15 Days

Had a bad attack of acid reflux last night. Not sure why exactly. I have been eating a few things that can make the reflux worse (onions, ketchup, a little chocolate), but it hasn't bothered me until last night. I wonder if the reason was that I fell asleep in my recliner with my bra on and it is tight and maybe the physical pressure from the bra strap made the relux shoot up into my throat. I took it off right away and that did feel better.

What an awful experience. :doh:  This one was mild compared to what I have experienced in the past. I took a bunch of Tums and a Zantac and Nexium. Doc said I could take all that if I needed to. I kept coughing up more acid. I am amazed I have a singing voice left after all these acid attacks. I also drank some milk and ate a plain piece of bread. From my experiences, that recipe has helped the most. I think the bread absorbs some of the acid and the milk is cooling while the acid reducers do their work. Don't drink water. That is not helpful. It takes 5-10 minutes to stop urping up the acid, but it is a relief when it does stop.

Went to Wal-Mart yesterday and got necessary things. Rode the scooter. I didn't get as wiped out yesterday as I did the last time I went. The air was not as heavy. Today I napped a lot.

Oh, I lost another pound. Yea! That's three off of the seven I just gained. 🙁  Oh well, gotta be happy for the loss 'cause I am not even trying. I think I just way overate and gained that seven pounds and now that I'm back to my “usual” fare I am losing the weight.

Have decided to refocus on being a personal historian. I kept thinking I couldn't do it because of being ill. But then I started thinking I could do 45 min interviews at a time. The older people may not want long interviews anyway. It probably wears them out too. It feels good to have a focus and project in mind.

Hope good things come your way too!  😉

Later…

I just saw a gal on the news who has MS and she used the P90X exercise program and she is now walking! She looks fantastic and has lost 76 lbs. exercising and eating one protein shake instead of a meal. I ordered the P90X DVDs off amazon and am going to give it a try. I have looked at the program in the past and thought about getting it. Will keep you updated on my progress.

[sjess]

3 Months 16 Days

I googled the gal with MS I talked about in the last post. I found her website and sent her an email seeing if she is available as a coach. She might be flooded with requests, don't know.

Found out the meal replacement shake is one the makers of P90X put out called Shakeology. I might skip on that for right now. Seems she needed it to get her body working because of one of the effects of her disease. I just need to eat less! I can figure something else out, I think.

Anyway, the exercise dvds should come tomorrow. I hope to hear back from her, but won't be surprised if I don't. She may be just swamped with emails after her story aired.

Am wondering how this is going to go. Probably will have to start very slowly.

Didn't do much today. 🙁

[sjess]

[user=1956]sjess[/user] wrote:

I googled the gal with MS I talked about in the last post. I found her website and sent her an email seeing if she is available as a coach. She might be flooded with requests, don't know.

 

OMG, the gal with MS that I've been talking about is Cammie Lusk. I got an email back from her today and she is available and willing to be my coach! I'm so excited! :roll-laugh:  You know what this means–no more sitting around feeling sorry for myself. If this gal can do what she has done, I can surely do something.

I have high hopes, but now the work starts!

 

[sjess]

3 Months 19 Days

Well, was very tired and worn out today. I hope this P90X doesn't turn into another thing that fizzles. I haven't heard from my coach yet. Am a bit disappointed with that. I imagine she could be very busy after her appearance on the news. The gals at the local hospital were all talking about her. She might be too busy with other things to work with me. That's okay. I did two days of workouts and skipped today. Maybe I'll be up to doing one tomorrow. I hope so anyway. I mostly just wave my arms around trying to mimic what they are doing and utilize the same muscle group. These guys on the video are very intense and are doing things I will never be able to do.

I'm in a holding pattern I guess. I am trying to keep my spirits up while I wait for the AP to work. If I didn't have the hope of this drug, I think my spirits would plummet. I see now how people can just give up and they end up dying. I bought a book on the will to live. Should get that out and read it. Most people have their family to live for or their work or a ministry/charity. We don't have any children and I don't have much of an extended family. Both my parents have passed away and my brothers are busy with their lives. I keep in touch with my one brother via email which is great, but not much of a relationship. I am not really well enough to be a reliable worker, though at times when I feel good I think I can do it, then I have a bad day and know I can't. That leaves a ministry or charity. Might have to think about that.

I need to find passion for living again. I was very spiritual, then I had a horrible experience with a fundamentalist church that I still haven't recovered from. Got a book on that too that I need to read. 😕  This has been the biggest blow to me. It was a blow to my soul, deep and dark. Perhaps I should concentrate on recovery from that.

So I'm hanging in there trying different things to pass the time and stay positive and maybe improve my situation a little. It is difficult when you don't feel like doing much of anything. I do have some really good college level education classes on dvd. I might pop those in. I can usually use my brain, except when I get brain fog. Or focus on learning more about my hobbies or being a personal historian. Need to get that stuff together so I can just sit down and have the stuff handy. Maybe I'll gather all this up tomorrow. Yeah, that sounds like a good idea.

[Author]

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