Hope for MCTD/IPF

[sjess]

Day 56

Coming up on 2 months of AP (Day 60). I think I should celebrate! I'm not much of a party girl, but I do enjoy a good celebration. Let's see, Day 60 will be Friday. I'll have to come up with something. I do have some more daquiri mix. Hmmmm…

I feel badly for my pooch. She is starting to get round just like me. I need to get her out and exercising more. I was in town this afternoon. I should have done something with her in the morning. Will plan on working that into my extremely busy schedule…Ha NOT! My back just isn't up to walking very far right now and I'm not sure I can start the 3wheeler with my back being sore. It is a pull start motor and it really wrenches my back to pull the cord. Hubby started it for me the other day. Wish I had a machine that started easier.

I had my last chiropractor appt and first physical therapy appt today. The therapist feels that I have injured my right hip. There is some joint in there that is inflammed (you can tell how well I understand it :). Apparently my symptoms and the pain points all indicate the same thing. I did take a nasty fall a while back and it wouldn't surprise me if that did it. Apparently it just hasn't healed and is grating away in there messing things up. She treated it with deep ultrasonic heat and then heating pad. I go back again Wed and Fri this week. She also told me to stand square on both feet and not favor one leg or the other. That is tough, but easier now that the chiro has put me back in place. I think it would help me to just stand for a few minutes. She is going to give me some exercises to do later.

After two respiratory therapy and one shoulder therapy sessions in there, all the PT gals know who I am. It is nice to walk in there and they all say “Hi”. I do love some things about small town life.

Goldie really has me worried. She is so unsettled tonight. She stretches in the play position over and over. Maybe she is feeling sick to her stomach. Sometimes she does that and then ends up throwing up. She felt warm to the touch today and she has been breathing heavily even inside in the air conditioning. (Edit Addition: Lynnie told me these are signs of stomach discomfort and a possible obstruction and that Goldie may need medical attn if her behavior continues. I'll keep my eye on her! Thanks Lynnie!) 

I was very happy today that I was able to drive myself to both my appts and to some other errands and I wasn't totally wiped out when I got home. That is amazing. Good things are happening thanks to AP. Yea!

[sjess]

Day 57

My back is doing better today. YEA! It isn't healed, but definitely on the mend. I think the two treatments (chiropractor and PT) really went to work and did some good.

Hubby was around for lunch, so I asked him to start the 3 wheeler and I took Goldie for a walk. She saw me getting my oxygen tank on and she started yowling and talking to us. She did NOT want to be left behind!

We made our way up the road and then back. We went slowly and not too far. It was very hot and somewhat humid and I didn't want to push Goldie too much, especially after her “fever” last night. She seemed to recover from the outing just fine, so I think it was good to get out and about for a bit.

Have another PT tomorrow. Hoping this will really make a difference. Once I get my back fixed up and am done with PT, I'm going to start thinking about getting the AP IVs in Ida Grove. I've decided to just tackle one thing at a time, though.

Well, supper time. Talk to ya later.

[sjess]

Day 60–2 Months on AP

Hard to believe it has been 2 months now. I've done fairly well keeping to the treatment protocol. I have missed some doses, but not very many. Keeping the doses an hour away from food and two hours away from dairy is tricky for me sometimes. There are times I have eaten within an hour of taking the mino, but I have done better than I expected to to tell you the truth.

I feel like I am making improvements. I do not require as much sleep. I no longer feel like I am dying or think about death. I am even able to drive myself to various appts. So I am definitely making positive strides toward less fatigue and brain fog and a bit more energy.

I should be jumping up and down for joy, but I'm not. I want to be healthy again and I guess I am expecting to get there with the help of AP. I am not ungrateful, though.

Hopefully in the next month or two I will be able to make it back up to Ida Grove to get the IVs. That's my plan anyway.

So woohoo. Thanks Dr. Brown for your AP!

[sjess]

Day 63

Thank goodness for PT! My back/hip is feeling so much better. Still is sore, but not nearly as bad as it has been. I have two appts. this week. That might be enough. I'm not going to rush it though. This has been bothering me for a long time so I want to make sure it is healed before I drop the PT.

Because of my back feeling better and having a bit more energy I was able to do some work in the kitchen today. I rinsed off the dishes and stacked them in the dishwasher and ran the dishwasher. That's the most housework I've gotten done for quite some time. I have to push myself to get up and going, but once I'm at it I can go for a while until my hip complains or I run out of steam.

I wonder if there is something wrong with me. I just keep eating and eating. Is it medication or is it me? My gut is just hurting and uncomfortable and I still eat. I just don't get it. Have I stretched out my stomach–can that even happen? I have this voracious appetite and I don't know why. Is that a side effect of mino? I'll have to check. I really feel distraught over this. Thankfully I am able to finally be up and doing things which will hopefully help me eat less and get more exercise so I can lose some weight. I'm just truly baffled. Why do I keep eating when I feel so full and miserable?  :doh:

[sjess]

Day 66

Boy am I glad to see the day numbers increase on my tally of days I've been on AP. I am struggling with some depression again and the only thing encouraging is the hope that AP will make a difference and enable me to feel better eventually. If I didn't have that hope, I think I would probably give up. Some people have their children or grandchildren or spouse to live for. No kids for me and I often feel like I am a burden to my spouse and he'd be better off without me.

But, no sense of getting gloom-and-doomy I guess 'cause I do have a hope in AP and I do have a dog that I must live for. She really needs me. I don't want to offend anyone who might read this, but I know a lot of people put their hope in God saving them (and I used to be one of them). But I've seen enough good people go to their graves trusting in God to save them from their plight to expect that sort of saving grace. I don't begrudge him that. I still love God. I think a person needs to love him for who he is, though, and not who you think he is. Maybe AP is God working. Maybe he enabled me to find this treatment. Could be. Who am I to understand God? I guess I am saying all this to explain why I don't say that I'm putting my hope in God. I think often when people say they are putting their hope in God, it means they expect to get well and not die. I don't know for sure what God is or is not doing, will or will not do. But from just looking around, you can make a few assessments on your own and that's what makes sense to me.

 

Okay…

So I've finally figured out what's bothering me. A friend asked me to go with her to garage sales Saturday and I'm really anxious about it. I'm really short of breath right now and I don't have much zip, which she knows all about (she gives me my bath). But what has me upset, is that I'm afraid that either I won't be able to go and she'll never ask me to go with her again, or I'll go and won't be able to do much and she'll never ask me to go with her again. I think they call that fear of rejection. I'm really scared and sad. At least I know now what's the trouble so I can face it. Sometimes that is half the battle! 😛

[sjess]

Day 69

In thinking about my symptoms of depression, I realized that I have a very deep feeling of tiredness. Not physical or mental fatigue (though I have both of these too) but a fatigue of my soul. All I can think of to call it is a lack of energy. There's no passion or excitement or joy of living. So I do what I always do. I turned to books for answers. Thank goodness for amazon.com. I ordered a couple books used and then got a kindle ebook to start reading on how to increase your energy. I hope they help me. I know one thing I need to do is to start appreciating my body for all that it is rather than hating it for the things I don't like about it (such as weight and illnesses).

I have been thinking about my tornado/disaster preparedness project and found a book/workbook called Ready in 10 that looks really good. That should arrive Wednesday so that will give me something to start working on.

I also ordered a 4-wheeled rollator with a seat to use while garage saling and walking. I think I will feel more comfortable walking if I know I can sit and recover if I need to.

So made a few positive changes. I also made a recording of me singing Patsy Cline songs. I had a request for that and I finally got it just about done.

No big changes AP-wise. I'm waiting around for some energy, but I'm thinking I might have to go get it by starting to do some exercises. I'm very concerned about wearing myself out, but I'm not doing anything really important right now, so it is the perfect time to start in exercising 'cause if I do have a flare it won't interrupt anything majorly important. Will see how that goes 😕

[sjess]

Day 70

My rollator came today and I really like it. I think it is going to help me to feel more comfortable walking and going out to do things like garage sales. Thanks Eva for the great idea!

I got a message from someone on sparkpeople and it really encouraged me to get back to watching my weight. I got on the scale and darn if I haven't gained 6 lbs! I can barely see my face outline anymore. That is enough for me. I got on the NuStep and was able to go for 22 minutes! I plan on making that an everyday activity as far as I am able to.

I think I worked something out in my head. I've been getting so down on myself and just hating that I am overweight and I finally stopped and thought about what's up with that. I think it was all about high school and wanting to fit in by losing weight. I've just kept that same old desire (thought pattern) going through all these years. I think it's time to let go of that dream! 😉  A little late for that one. Am trying to be more compassionate toward myself.

I also realized I have had an unhealthy thought pattern of feeling badly about being ill and “not able to do things.” Was glad I caught that one. It's gone now. I feel much freer and more able to be proactive about my situation. I've learned through reading “A New Earth” and through experience that once you become aware of these negative thought patterns you can get rid of them. You see them and how destructive they are and poof they are gone. It is nice to know you don't have to be a slave to thought patterns. I hope everyone knows that. You can control your thinking and your moods too. It takes some practice, but it is great to know you don't have to be bound to unhealthy thinking patterns that make you miserable. You have to kinda step out of your thinking and “observe” your thoughts for a while. Then you'll see how silly some of the stuff you are thinking really is. It's pretty cool and very freeing. I highly recommend it. :dude:

 

[sjess]

Day 71

Am feeling a little better about myself. I've been careful with what I eat today (not overloading my plate and no high calorie snacks) and exercising. It is amazing how you can feel better just by moving in the right direction. I wrote a blog on sparkpeople.com about how “I Finally Get It”. I finally can see that being “thin” is just a matter of calories in and calories out, food and exercise. I used to think thin people had some magic and they and only they could live a life as a thin person and I was destined to be overweight. I discovered a few things about my attitude toward weight that go clear back to high school some 28 years ago and I think after that I am finally able to see things more clearly. I can see now that there is no magic, it's physics and anyone can lose weight and keep it off…even me.

I exercised 22min on the NuStep yesterday and twice on it today for a total of 31mins. That is really good for me. I even felt up to washing my hair today! I just washed it once and no conditioner, but it looks and feels clean. So much nicer. Hubby asked where I was going since I was all spiffed up. 🙂

Hubby put my cup holder on my rollator, so I am ready to go! Where are the block sales…well, maybe just one block sale to start. We're planning on going garage saling at the lake this Saturday, should see some nice stuff over there. There's $$$$$$ in that area, not like where I live–LOL. I just visit. I quit going on the home tours 'cause it made me turn my nose up at my own house. Not a good thing. I have an adequate house, so no sense exposing yourself to something that is going to make me think less of it. There's always someone with a nicer, bigger house and then there are those with more than one house and so on. It's up to us to decide where the whole thing stops and we choose to be satisfied with what we already have.

Well that's about it for today.

Enjoy!

 

[sjess]

Day 72

Used my new rollator to go for a walk today. It was great. I stopped a couple of times in the shade and sat down on the seat to catch my breath and rest, and then proceeded on. I think the rollator is really going to give me some confidence in getting out a little more. Knowing that I can sit and rest when I need to makes such a difference.

I think I'm feeling better. Probably the exercising. I woke up with a sore right hip, so I decided to not workout on the NuStep today to give that hip a rest. I decided to walk instead which worked out great 'cause it gave me the chance to try out my new rollator.

Washing my hair yesterday sure gave me a boost of morale today. I felt like a woman again. I did a quick repaint on my nails. I've been wanting to see what white looks like on them, so did that tonight. I like the neutrality of the white, but I do believe that the light pink color “Prom Night” is my favorite. They quit making it, so thankfully I got a second bottle when they were closing them out.

I ordered a new outfit to wear for the next time I sing. It's a lined gauze crinkle skirt (black) with a guaze smocked top. Then I ordered some black sandals to go with and a black pearl bracelet and earrings. I got to thinking about wearing those sandals and decided this would be a perfect time for a pedicure. So I made an appt. for that. So I'm set for singing and anything else that may come up that requires me to dress up a bit. The outfit should be cool and breezy. I'm going to sing some love songs as my Mamma Mia songs don't seem to be a popular choice. I'm going to pick out some Judy Garland songs to sing next time, “Over the Rainbow” and such. I'm going to look into songs from the musicals. Hopefully some of those will be familiar to the folks at the nursing home. The gal at the home kept telling me to sing whatever I want to. It seems, however, I can sing whatever I want to as long as it is what the residents are familiar with. I kept asking the rules…anyway, now I know. Maybe knowing those Mamma Mia songs will come in handy some other time.

Good night to all. Pleasant dreams.

[sjess]

Day 73

The depression has lifted. Am feeling much better mentally. 🙂

[sjess]

Day 75–Two and a half months on oral AP (minocycline)

It can really be frustrating trying to “manage” this disease. Like today. There was a family anniversary get together this evening at 7pm. First I got asked to sing at it and I decided it was too late in the day. Then today, it is hot and very humid which makes me falll in a pile pretty easily. We heard that the room wasn't well cooled, so after dinking around with it all day, I finally decided I would stay home.

Of course, all day while I'm dinking around, I'm “saving” my energy incase I go to the event. So I lost a good day to an event I didn't even go to. I find that very upsetting. Plus, I was alone while hubby went to the event. That upset me too. I don't mind him going, I mind that I can't go to what I want to go to because I am sick, but it feels like resentment toward him.

So now I'm up at 11:30pm, not able to sleep because my mind is mulling all this around over and over. I'm just about ready to shut my eyes though, so hopefully I'll be in asleep before too long.

I want to handle any future situations like this very differently. Not exactly sure how to do that yet. Will have to think on it.   :headbang: 

 

[sjess]

Day 76

Well, I was up 'til 1:30am last night! Argh! :X 

I had an epiphany today. From what I understand from what I've read, there is energy floating around us and some energy is in the form of thoughts and they kinda float around in our aura and it's up to us whether to pay attention to them when they travel through our brain. (This is my poor understanding of it anyway). So I just visualize these thoughts floating around and when they hit my brain they spark of a random thought and then it is up to me whether I pay attention to it or not. If I pay attention to the thought it stays and if I continually pay attention to it I form a habitual way of thinking and the habit starts to become a part of who I am.

Well, I was thinking how whole thought systems can become engrained like that. Some are sorta forced on us by our environment (parents, etc.), but others we choose to associate with. It seems to me we can unchoose them by recognizing them and ignoring them and replacing them with the thought patterns we want to have.

All of a sudden, I visualized myself taking on a thought form of who I am with regard to food and how I can change that. For example, I used to have these thoughts in my head regarding food that were shaming and demanding that I eat this or don't eat that and I would listen to those thoughts and they so irritated me that I began to resist them to the point of doing just the opposite to spite that inner voice. Now I'm seeing I can ignore those unfriendly thoughts (like: you're so ugly and fat, you never eat the right things, don't eat brownies, eat carrots, etc.) and identify with healthy, positive thoughts, thoughts about how I desire to act in accord with what is good for me (like: potato chips have a lot of calories and fat, I think I'll eat just a handful). It's a tricky process and it is taking time, but I think it is working.

So anyway, I just wanted to share that. It was such an ah-ha lightbulb moment that I had to write it down. I think a person could apply this to anything, like how we perceive ourselves with regard to our illness. We can think of ourselves as poor helpless victims, or form another more positive thought system.

I don't know if this is making any sense, but it was an insight for me and I am hoping it will help with the choices I make regarding food. I think it is so freeing to know we have choices regarding our thoughts and thus our moods and thus ourselves.

[sjess]

Day 78

I've hooked up with a gal named Linda on sparkpeople.com who is in a very similar condition as I am in. In her case it is due to Lupus. We both have become near-hermits in our homes and we are making a commitment to each other to change that. For me, putting my oxygen backpack on everyday would be a good start. Whenever I think about going somewhere I get tired just thinking about having to air up my oxygen tank and switch over from the home air concentrator to the portable oxygen tank. If I got in the habit of doing that everyday, perhaps it wouldn't seem like such a big deal and I would be more apt to want to go out. I liken it to a mother with a young child having to pack up all the extra stuff you have to have with you to care for your child. It feels similiar I think, though I have never had a child and can't say for sure.

Another thing that keeps me at home is my hair. It only gets washed once a week right now when the gal comes and gives me a bath. I think that needs to change. If I were to wash it at least one other time, or two would be better, that would help me feel more comfortable leaving the house. That would be a second good habit to get into.

A third thing that keeps me from going out (other than my illness of course) is my weight. I just bought a book called Plus Style and it gives all kinds of advice on how to dress if you are overweight. I looked that over today and am going to look at it in more detail to get ideas on how to dress. I am an hourglass figure. I thought maybe that changed since I gained weight, but I don't think you change that, once an hourglass, always an hourglass, or apple, or rectangle, or whatever you are. I got some clothes the other day at Wally World that don't look too badly on me and I just got a dress up outfit that according to Della is that magic word: “slimming”; so that is a keeper. So hopefully I am starting to get a small wardrobe put together of some clothes that I can go out in that aren't too embarrassing. Before, I was going out in sweatpants and t-shirt, so just about anything is an improvement from there. Gotta shave the legs too and a little eye makeup would be nice. It's a lot of work being a girl!

It's a little bit scary thinking about going out. What if I get really tired and “fall in a pile”? It is so much less stressful to just stay home. But it is not good mentally and I have to stop passing on opportunities to go out because of greasy hair and hairy legs. I'm not saying that that is why I don't go out. I don't go out because this illness makes me so friggin tired I can hardly stand to do anything. But these other things add to the stress of going somewhere and so if I can eliminate that stress by having my hair clean, legs shaved, decent looking clothes to wear, etc, I increase my chances of feeling up to going out when I need or just want to.

Tomorrow I have a hair appt and Friday I have a physical therapy appt. These will be good opportunities to put my plan into action. This illness is a constant battle of will. It hardly ever is easy living anymore. I am glad to know, however, that I am not the only one who has become hermit-like. I hope together Linda and I can start to be a little more outgoing. Watch out world, here we come! 😎

Enjoy Life!

 

[sjess]

Boy am I :X

I hit the wrong key and not only did I lose the post I was writing, I lost the post I wrote yesterday. I think it was the delete key I mistakenly hit. I'm going to go pout now. Talk to ya later.

Oh goodie, I see I didn't lose yesterday's post after all.

Okay, I'll summarize what I was writing. I got my hair cut differently today so I think it will be easier to wash in the sink and I can wear it down and not pull it back in a ponytail all the time to keep the hair off my face. I wore one of my new outfits today and even put on some tanner in an effort to carry out the plan I set up yesterday to feel more comfortable getting out more. I haven't taken my morning mino the past four days. Just totally spaced it four days in a row. I think I'll set an alarm clock so I don't forget tomorrow. Plan to get out tomorrow by walking Goldie.

That's the barebones of what I wrote.

Oh, today I had this feeling that I would describe as discontentment/dissatisfaction and I took it to be hunger and that I needed to eat. That totally shocked me when I realized I was completely misreading that feeling. I got my wires crossed somewhere. Glad I realized that.

Goodnight and Peace and Love to You

[sjess]

Day 80

I just started a blog on Yahoo! Here is the link. I decided to read “James Allen's Book of Meditations for Every Day in the Year” by James Allen and then blog about it. So this is my first day blogging.

http://pulse.yahoo.com/_FVPYWCRN3KFT66JON6U2BG4AXY/blog/articles/169582

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