Hope for MCTD/IPF

[sjess]

Back is still tender and sore, but better today.

Guess I'm glad I didn't make an appt. in Ida Grove for Monday. More snow and blowing snow predicted for tomorrow and Monday.

I was afraid to go up the stairs today because of my back. Everything is so much harder when you're in pain. I took a couple of pain pills and put some Eucalyptamint on my back muscles and I think that is helping some.

I'm starting to feel better about rescheduling my AP appt. Will plan on doing that Monday.

Battled a little depression today. If I get going on the AP and it helps, I look forward to not having the depressive thoughts and feelings to push aside.

[sjess]

It has been a pretty good week. I heard from Dr. S in Ida Grove and we rescheduled my appt. with him for March 22. I'm so glad. Just hope the weather holds. Third time's the charm 😉

I finally relented and went to the chiropractor for my back. It is still terribly sore, but I think she is making progress in getting me healed. Muscles that were knotted and tender are now more relaxed and less painful. I go back to see her Tuesday.

I sang at the local nursing home on Wednesday. That went just fine, thankfully. It was cold, but no blizzard.

Still frustrated about my weight :doh: but haven't done anything about it yet. I ordered a book on how to make weight control second nature. We videotaped my concert and man, that was an eye-opener as to how I look. 😯 I am hoping I will get some help from the AP treatment.

So, I've got about 3 weeks to wait for my AP appt. I'm anxious to get that started and hopefully start feeling better. Luckily I have lots I can do at home to keep me busy. I'm getting tired of waiting though! :headbang:

[sjess]

Two more weeks until I see Dr. S.

I just read a post about someone who started AP and then had a bad herx rxn. I need to put that down to ask the doc what I should do if that happens.

I hope my back is fixed by then. I'm walking with 2 canes right now because my back spasms. I'm getting help. Would like it to be healed before my appt. I also want to get all bookwork/taxes done before then so if I do herx, I don't have anything pressing that has to be done.

I think I'm going to start the probiotics now everyday. I do have some yeast growth. Maybe the probiotics will get that under control before I see the doc. and start AP.

Generally, I feel like I belong in an old folk's home. I hope I have the strength to make it through the AP treatment! Because of my back, there is very little I can do without pain, I'm weak and short of breath. Good grief. If I can just get upstairs, there are things I can do up there. I'm still fatigued though. It will be interesting to me to see how my life turns out. Will I continue on a downward path or will the AP help me turn my life around. Tune in to for the next episode…

[sjess]

🙁 It looks like this back situation is going to be an ongoing thing. The chiropractor said there is inflammation in my right hip joint. Today, I could feel the ache in both hips. I think this is something AP is going to have to fix.

I'm kinda down today cuz of the pain and not feeling up to doing anything and all alone on an overcast, foggy day. I did do some singing and reading and talking on the computer. Hopefully Della will come tomorrow (she was sick today) and that will brighten my mood. Guess I'm feeling sorry for myself. I'm glad to have this spot to ramble and complain, it really does help me.

I'm feeling a little afraid of what might happen with the AP. I haven't had any major flare ups, and it sounds like this AP might really cause things to flare up and get bad again. What if I trigger off the illness? Is that possible? Will have to ask on the other side. I'm really getting scared about this. :crying:

Just had an idea. I think I'll check in with my GP and see if he would be willing to work with Dr. S. I don't want to be on my own. I'll have to ask Dr. S about the possibility of causing a flareup.

I'm pretty tired and emotional, probably best to think about this tomorrow.

[sjess]

:crying:

Feel like I'm getting the brush off from a “friend”.

I can't do everything that is wanted of me and it makes me want to crawl in a hole and die. This illness makes me feel like I'm letting everyone down. I don't understand why my husband resents having to make his own meal once in awhile. Good god! It makes me feel like I don't measure up. I know he puts up with a lot, but it's not by my choice! Guess I need to learn to stand up to his negative energy and not let it get to me.

I feel like I can't measure up, so it's time to shuffle me off to a home somewhere where I'll be out of everyone's way and life can go on without me. I feel like a gigantic hinderance to everyone. I feel like I've made a mess of everything. I'm an in-between. Not sick enough for assisted living and not well enough to keep up my home or myself. I'd like to unburden my husband.

I guess this calls for a re-evaluation of my life. Those dreams I've had and the expectations are no longer fitting my current abilities. Need to reup and see what I need to do or say.

Seems like life is a matter of constant adaptation.

[sjess]

Okay, I threw my little tantrum and I am feeling much better today. Glad I had a place to vent instead of blowing up at my hubby. We had some issues to work out, I realized that after last night's episode and some friendly input, so we talked today and that went great and I am feeling so much better in general and in particular about hubby.

Am still in a lot of pain with my back. The chiropractor is going to send me to the med doc if I'm not better very soon. I had a treatment today and I can feel it! Sore all over. Think I'll take a pain pill. I do think today's treatment really did some good, though.

Today was our anniversary. 21 years. He doesn't do the traditional stuff, so I decided this year to go ahead and do it for myself. I ordered flowers off amazon.com, I paid Della to make us a cake (yummy), and I bought myself an anniversary present. As we were heading into the chiropractors, I thought about whether it was good idea or not to do all that myself, and I realized that yes it was. It made me feel special and it made the day special. Our talk was the best thing about the day, but the other stuff was really nice too. I think I'm going to keep doing that. My birthday's coming up in April. Hmm, what can I do for that, I wonder 😉

A little over a week now until I see the doctor. I'm still having some questions about AP that I am going to bring up at my appt. The weather is supposed to be warmer and dryer next week (50s Monday), so hopefully that trend will continue on into the next week (Mon, 22nd) when I go to Ida Grove.

[sjess]

One week now until I see Dr. S.

I've been having some reservations about doing AP. I've been thinking about all the things that could go wrong. But after talking with a friend on AP, I realized I need to look at the whole picture and then not regret whatever decision I make. I thought that was fantastic advice. When I look at the little pieces of the puzzle, I get confused and scared; but when I look at the whole picture, my direction toward AP makes sense. When I consider how limited I am now and my relatively young age and the possibility of remission, I feel so much better about doing AP. And he also mentioned that I don't have to decided right away. Talk to Dr. S and then talk about it with hubby and then decide. More great advice. I'm so thankful for my AP pal :blush:

Well, it's mud, mud, and more mud here. Fog and overcast skies. Not conducive to cheerfulness! Thankfully I don't have the doldrums, though. Back is still painful. Keep on going to the chiropractor. She put some tape on it this time to try to help stabilize it, so now I've got pink tape attached to my you know what.

I'm finding out that I really love writing. Now that I'm laid up, I think I might try doing that. I've thought about writing for a long time but haven't done it. Maybe now that I can't do much else I will start. If I get published, I'll let you know 😎

I hope I have everything done for my appt. Here I've had all this extra time and wouldn't it be ironic if there's something I should have done. I really should read more in the book.

Be well everyone! 🙂

If you would, please send encouragement email to Sir Rifes alot. He is not feeling very well right now. Thanks!

[sjess]

It's Saturday night. My appt. with Dr. S in Ida Grove is this coming Monday. The weather forecast is looking good. Hope it holds.

It's been a very uneventful week. I've been sick the whole time with the stomach flu. I've been sweating on and off for five days. I finally upchucked on Wednesday which helped calm my tummy, but still queasy until today. Now today my head, throat and neck are extremely sore. Am I getting a head cold now? My back is finally feeling better, though still not back to normal. I hope I'm good to go Monday.

Anyway, I am so looking forward to seeing the good doctor on Monday. I'm a little anxious about it. I hope I'm prepared with what I need to give him. I haven't really thought of any questions to ask other than what do I do if something goes wrong. Hope I run into kathy there.

Well, hopefully I'll have something to report in the next couple of days. :blush:

[sjess]

Well I finally made it to Ida Grove to see my AP doctor. Yea!!! I saw him on Monday, March 22, 2010. I met kathygirl from this forum there. It was so nice to go there and meet someone I “knew” from here. We drove up to the hospital at exactly the same time, so we had no trouble finding one another. Her husband was with her as was mine. We had a considerably shorter drive than they did though, 2 hrs. compared to their 17! Unfortunately they had to keep on the move and were not able to join us for lunch, but it was great to meet them. She is talking about maybe going back there for the IVs. Wouldn't it be funny if we both go back at the same time. 🙂

The day after I went to Ida Grove, I came down with a fever of 102, saw the doctor, who sent me to the hospital where I was diagnosed with bronchitis. I was given zithromax and a steroid pack which seems to have taken care of the problem. Yea!!! 😛

So today, Tuesday, March 30, 2010, I am beginning AP treatment for MCTD with Pulmonary Fibrosis with high hopes that I will at the very least get some sort of life back as now I am at times homebound and need help with housecleaning and personal hygiene due to shortness of breath and lack of energy/fatigue. Throw in some depression and 100+ extra pounds and you've got a recipe for a not too happy camper!

I took my first pills today and so far so good. No allergic reaction or tummy upset, so I am :roll-laugh: I hope this continues.

The people on the board here are really wonderful and I feel so thankful to have been directed to this site. I'm not sure I would be at this place without all the support. If I get better, I don't know how I will thank everyone who has shown me friendship and support. I've been so isolated for so long without anyone to talk to. It is so good to have made some friends here and it is about getting better/trying to get better. That's a very good and positive thing.

Well, will keep reporting in as things progress. Hopefully will have good news to report.

Oh, I am planning on going to Ida Grove to get the IVs done as soon as I feel like I can make it up there. My hubby can't stay all that time with me, especially now (he's a farmer) and I can't think of anyone to go with me. One disadvantage of not having children. 😕 Mom and/or Dad would have gone with me, but they are both gone now. And everyone else is busy with work or family or both. I'm just going to keep my fingers crossed that either I will be able to make it on my own, or something/someone will turn up. You just never know what's around the corner. (I love that line from “Castaway”. I think it is a good motto to keep in mind.)

Well, guess I'll quit for now. Am feeling very hopeful!

Sharon

[sjess]

Day 2 of mino. Feeling quite well. I went for an outing with Goldie to get prescriptions and Mt. Dew. Not sure why I am feeling so much better. It seems hard to imagine it could be the antibiotic already, but maybe the zithromax gave me a leg up and now the mino is taking over. A big WHATEVER! hehehe 😉 I don't care why, just glad I feel like doing something and not totally exhausted after doing it. A little tired, but not too bad.

Am keeping in mind that I could start herxing any time, so am just enjoying the moment.

Told the gals at the drug store what I am doing with AP. They were supportive. That's one thing I love about a small town, you walk in to a store and a lot of the time people know you.

[sjess]

Day 3

Felt pretty good this morning. Woke up at 8am and got up. Not nearly as sluggish as I usually am. I took my mino and changed clothes. That sounds so ordinary, but for me it's a big deal. A week ago I didn't care what clothes I wore and didn't have the energy to do anything about it if I did care. So am seeing improvement there.

Then around 11:30am I petered out. I took a nap in the afternoon. Had to get myself up to take the mino around 3:30pm.

I'm thinking I will take one probiotic with each meal. That way there is live digestive enzymes with the food to digest it. Don't know if that is how it works, but I'll give it a try.

I had a change of mind today. If I get to feeling better, I think I want to pursue putting together a course on happiness. I thought I would be a personal historian, but I love being in front of people and teaching. I'll put the course together and then see what people think. Will use things I have learned from being ill as well as things I have read/others say. I think it will be fun. There are so many people who are struggling with their lives. Young kids committing suicide. Maybe I can help just a little bit from what I have learned through my life.

That is really what my life has been about: learning how to think and do things differently so I can be happy with myself and get along with others. In my experience, it isn't such an easy thing to do! And it really isn't something you accomplish. It seems the thing is not to arrive, but to learn to adapt 😉 We keep thinking we will be happy when our circumstances are what we want them to be. I think the truth is we need to learn to adapt to our circumstances. That's the history and process of life: evolution through adaptation to changing circumstances. The good life isn't somewhere up ahead, it's now in the processes of creating desired outcomes.

[sjess]

Day 4

Had a bad night last night. I felt very short of breath. I took both my inhalers, cranked up the oxygen machine as high as it could go and took an anxiety pill for I was feeling anxious from being short of breath. My nose was stuffed up too, so I put some Ponaris liquid in nose and that cleared it up. Fortunately I was able to fall right asleep. No fun being awake when you feel that way 😯

This morning I can breathe a little freer but am still tight in the chest. Several factors could be in play: weather change; allergies; residual bronchitis; herxing? I think it is most likely the weather change. It is supposed to storm today and I often, if not always, get this way when a storm hits. Just gotta ride out the storm 😉

Don't have tons of energy, but not terrible either. Will try to get some things done today. Oh, we have our tax appt. today! Almost forgot. Might go with hubby to that if I'm up to it. If I'm feeling anxious, going to the tax man might not be a good idea hahaha

Later in the evening…

I'm a little concerned. My chest is still feeling “tight” and breathing is difficult. Also my joints are a bit sore: knees, shoulders, fingers. Am wondering if there is a lot of the mycoplasma in my lungs, could a herx rxn cause me to experience inflammation/pain in my chest as the bugs die off. Will keep watch. I am not as short of breath tonight but am still feeling less free air flow and anxiety because of that. Tightness is in the bronchial area of my chest. Hope this goes away soon. Have not had this problem until I was diagnosed with bronchitis a week+ ago.

[sjess]

Day 5

Still a lot of tightness in my chest this morning, but I am starting to cough up phlegm. Maybe this is part of the healing process 😕 The phlegm is clear, so there is no infection. It would be nice if this were a sign of the scar tissue in my lungs being healed. Maybe that's a bit optimistic though. Could just be the bronchitis breaking up. Don't know. Will just keep watch and see. 😛

[sjess]

Day 6

I don't feel pain in my chest today when I am upright, but when I lay down it is quite painful. I am wondering if this is the medicine at work and something is going on in my lungs. Maybe the bugs are dying off and causing irritation or inflammation or something and then I cough to expel the little buggers. Okay, I'm just guessing here, but it makes sense to me. 😉 Might as well think hopefully about this. Thankfully it is not bothering me today. Pleurisy, in my experience, doesn't seem to clear up that quickly. I suppose it could be allergies, too. Getting inflammation in the lungs. I hope not. 🙁

Anyway. Oh, I have had some strange sensations in my mouth mostly around the back of my lips. I'll have to check that out. I hope I am not getting thrush. I am taking the probiotics. I've read about some people using apple cider vinegar. Might have to find out how to do that.

Am feeling a little peppier today. Will try to get up and do something. It is overcast and kinda gloomy, but maybe getting up and around will help me feel better. Gotta get hubby to fix up my 3 wheeler so I can ride that. That sounds like fun now that my back isn't in constant pain :doh:

I actually made something for breakfast. That is a big advance for me. It was good too. Schwan's frozen egg mix in a tortilla topped with some cheese. I know, I could make a tort for supper. Will see.

I really hope I'm not getting thrush! 😛

Later: I did make the tort. That is 2 meals I made in a day. That is a big step forward for me to 1. actually feel like doing it and 2. do it. Definitely small steps forward. 😀

[sjess]

Day 7

Am starting to care about taking care of myself. Am starting to have a little more energy and I think the brainfog is lifting just a pinch. I feel like I am starting to wake up from a very long sleep.

If I think too far ahead it still overwhelms me, so still must take things one step at a time.

Am starting to have thoughts about how much of my life has been wasted. I think it would be more profitable to just be glad I found some help and be thankful for whatever amount of progress I make. Regretting the past is a waste of time. Being thankful will move me forward.

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