Hope for MCTD/IPF

[sjess]

3 Months 25 Days

I have felt pretty good the last several days. Went to Des Moines on Monday to see my rheumatologist. That went exceptionally well. He seemed okay about the news that I am going to be getting my first IV in August. He really surprises me sometimes. I told him I didn't want to close any doors to treatment options, but right now I want to give AP a chance to work. I think he understood.

Then, went out again today! Had a great time going to a scrapbook shop. I just had a really good time. I hope this means the AP is working. I was in a great mood too because I think I am finally on track with dealing with my weight issue. I think I've made some shifts in my thinking and am on my way to my goal weight. The sparkpeople.com website and the people there have been a huge help and I have only just met a few of them so far. I feel so much better about myself and especially feel good knowing that I am finally eating well. I'm off the pop and drinking gallons (seems like) of water and eating fruits and veges and not snacking unless I'm hungry and then I have an apple or grapes or blueberries. When I eat my main meal at noon I am just careful to stop when I have had enough.

Well, everything works together, so feeling good about myself is going to help all around. I was really living under a dark cloud. Today when we were driving home everything looked so pretty. The greenery and the blue sky with the beautiful clouds in it. It is like being in love, and it is just because I feel okay about myself because I am eating well. Who knew I could feel this way? Well, it's great and I haven't even gotten to my goal yet!  :dude:

 

[sjess]

3 Months 28 Days

Almost 4 months of AP now. My right thumb has really been hurting. Could it be a herx? I wonder if the area where the herx is hurting is where the blasted mycoplasma critters are dying? Don't really need to know the answer. Was just wondering.

I'm on my 6th day of my “diet” and am going strong. Amazing what a lightbulb moment can do for you. I've dropped 4 lbs. One more pound and I will be at my first mini-goal of weighing less than 250lbs. I am basically just eating when I am hungry and stopping when I feel satisfied. Then the times when I want to eat but am not hungry I tough it out and drink water. It's working so far. I lost weight doing this once before, so it is a road tested method that I can live with. No counting calories or fat grams or writing every morsel you put in your mouth down on paper. Don't think I could live that way. I know it works for others and that's great, just doesn't work for me. The SparkPeople.com website is great. I have found a lot of support there. I highly recommend it.

Two weeks until I go to Ida Grove for my IVs. I made arrangements for my oxygen and rearranged a doctor's appt. I think all I need to do now is make a list of what I need to take and pack up. I am going to miss Goldie terribly. Hubby too. Will be fun to get back to them when I am done. 😉

Hope you all are with your loved ones tonight. 🙂

[sjess]

3 Months 29 Days

I just read Wayne's update. After 8 months on AP (and diet changes) he is doing great. He is flexible again. It occured to me that if the skin can heal of scar tissue, why not the lungs? My rheumatologist (non-Ap) keeps telling me that once the lungs are scarred, they are scarred for life. I hope this is not so. I really believe the body has abilities beyond what doctors know about and the stories I am hearing here seem to say that the lungs can heal.

My thoughts have turned toward doing things again, and right now I am just mystified at seeing people be energetic and do things, just regular things during the day. I can't even imagine what it would be like to have normal energy or extra energy to play tennis again. I wonder where all that energy went. I didn't even think about it before. Now it seems so elusive. Actually, it seems impossible. I hope it isn't impossible. I hope I can heal. Might take time.

I got my blood test results. My CRP and Sed Rate are both elevated as usual. Sed rate is 102 and CRP is 3.3. I have to check my notebook, but I don't think they have come down any. But I'm sure the sed rate has been even higher than that. Guess maybe it is too early to see results. Maybe the IVs will help. Am wondering if Dr. S will have me do IVs monthly!

I'm beginning to feel better in my body as a result of the weight loss. My stomach doesn't feel so bloated and doesn't seem to stick out as much. Maybe that is where I lost the weight from. Yea! I hope so. There and under my chin/face can go first. 😛

I really need to figure the checkbook and pay bills! Jeepers I'm putting this off again! Some people never learn I guess LOL. :headbang:

[sjess]

4 MONTHS!  :roll-laugh:

Celebration time! I've been on AP 4 months now and two weeks from today I am scheduled to start the IVs.

Overview…

I have read back over my writings and I have noticed a few patterns. It seems that when I am feeling good physically I jump to the conclusion that the AP must be working and when I have a bad day physically I think I might be having a herx reaction. I think, however, that most likely I am just experiencing the regular ups and downs of my disease (MCTD).

It also seems that I travel in and out of mental distress, at times feeling hopeful and planning for the future and then at other times feeling depressed and uncertain. I think most people go through these mental/emotional highs and lows, but with the added stress of a chronic disease this roller coaster ride seems more exaggerated and difficult to manage.

I talk a lot about my weight I noticed and my worries. I have read that it is quite normal for a person struggling with a chronic illness to feel an increased amount of stress due to the stress they are already living under from the disease. The added burden of not being physically well enough to deal with many of the stresses causes frustration and worry.

Overall, what I see looking back over the past 4 months of writing is an average person struggling with chronic illness and its effects, frustrated at her limitations and hopeful of the promise of AP. (I hope that is a fair assessment.) Hopefully the next 4 months will see that promise fulfilled.

Today…

Today was like the past week or so in that I struggle with making myself do things. I seem glued to my laptop and that's all I care to do. I don't understand this. I did make myself pay a bill, but I still have to figure the checkbook and pay the rest of the bills. Will HAVE to work on that tomorrow. I think I am trying to escape. Escape from real life.

I was doing so well with my back, but then yesterday I got on the NuStep and after only 10 minutes I had totally messed it up again! :doh:  I'm walking with canes again today and sitting on my infrared heating pad and taking Darvocet hoping the pain will go away. It must be a problem in the joint like the physical therapists say.

Had a visit from a friend today. That was so nice. We got caught up on the news and she filled my empty ice cube trays which I really appreciated.

Oh, good news. I've lost 5 lbs and this time I worked at it and made it happen. Feels good. WooHoo!

Hope your hard work is paying off for you too! :blush:

[sjess]

4 Months 7 Days

This week didn't go very well taking my minocycline. I missed quite a few doses due to illness and messed up eating schedules. :doh:

One week until I go to Ida Grove for my first IV treatments. I will begin on August 9th and continue through the 13th. I'm so glad Karen will be going with me. I am going to work at gathering things up and preparing to go throughout this week. I am amazingly out of it, tired nearly all the time and not able to do much. I did wash my own hair in the sink yesterday. That was a major accomplishment for me. We went out to supper with my brother and his wife, so I had to do something with my hair. Karen was ill this week and couldn't give me my regular bath, so my hair was very greasy. Yuck!

Then yesterday my gall bladder acted up. I was belching up those horrible, rotten egg smelling burps. Oh I hate that. Today I skipped breakfast, had applesauce and a handful of saltines for lunch and had lemonade and saltines for supper and so far no more burps. Yea! I have some jello I might eat a little later.

A friend of mine wrote me that she is feeling terribly depressed and wanting to give up because of her health situation. She is in a very similar situation as I am. I guess I am not the only one struggling. I suggested she put together a scrapbook or write stories down about her children as a gift for them. Don't know yet if she will like that idea. I know I would love it if my mother had wrote down stories about me. My advice to her was to get her mind on other things. That's the only thing I know of that helps.

[sjess]

4 Months 23 Days

I spent Aug 9-13 in Ida Grove getting my IV treatments with Dr. S. I am noticing some minor aches and pains throughout my body, which I think are probably herx rxn. That encourages me to think the medicine is working.

I felt up to doing some housework yesterday and my mind is filling with hopeful thoughts of the future and what I want to do when I am feeling better, so I see that as another very positive sign that the medicine is working. Dr. S said that depression is a direct result of the disease process. It is a physical manifestation of the infection. And many people see that lift when they get the proper medicine. I think that may be what is going on with me. I don't feel quite so pessimistic about things. The feeling of imminent death is lifting. Yea! I'm thinking about finishing the work I have started in the house and playing tennis again and being a personal historian. It is good to have hopes and plans.

I've been thinking more about being a personal historian and I think I feel good about that. That is something that people seem to value through the years: pictures and stories, and it is easy to store when it is neat and organized. I think that will be a fulfillling and rewarding career that I'll enjoy and can do from home. I really don't want to work in an office again. That's not something I like.

So, am seeing some small improvements. I guess that's how it goes. More wait and see. Dr. S says he preaches patience. So I am going to try to continue to be patient.  😕

 

[sjess]

4 Months 24 Days

WOW! Three whole GOOD days in a row! I'm flabbergasted.

This is so fantastic! I am actually feeling up to doing things again. I have worked on the house for a couple of hours for the past three days! I haven't been able to do that for about a year now! I feel so much better. This is really amazing.

I still have to sleep quite a bit, like this morning I worked from about 10 to noon and then fell asleep in my recliner after dinner and slept for most of the afternoon. But I have heard that that is normal for the recovery phase of this, so…

[align=center]:roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh:  WooHoo!   :roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh:[/align]

[sjess]

5 Months and 5 Days,

I feel like I am making small, slow improvements.

For one, my hip is much better and I suspect that is due to the IVs. It is still sore, but not as bad as it was and I can move around and up and down much more easily. I'm very grateful for that.

I have a little more energy and have been able to do a few things around the house. There is still a lot to do yet, but I am making small strides that are encouraging. After watching shows on people who hoard while in Ida Grove, I came home ready to get rid of things and I have. Making progress there.

I have also started thinking about and working on my Personal Historian things. It feels really good to be doing that. I think I need some sort of job to make me feel good about myself. I know the medicine is helping because before it was all too much to even think about the PH stuff let alone do it. So progress there.

I have been criticized for what I have written on this thread, and I just want to say that what I have written here is me at my sickest. If you feel inclined to judge me, I hope you consider that in your judgement. I have written here the thoughts I have had as I struggled through the toughest times I have had dealing with this illness. So please do not think that this is an accurate depiction of who I am. Illness prevents us from being our best and doing things that need to be done. I hope you do not see this as character flaws, but as weakness as a result of disease.

To those of you who have supported me in this endeavor, I thank you from the bottom of my heart. This journal has been such a lifeline to me and I appreciate the kind words of encouragement I have gotten over the past 5 months.

[sjess]

5 Months 13 Days

I'm going to have to make this short. I have a chiropractor appt. in a little while that I will have to get ready for. But I just had to write about this.

I am really struggling with getting back into the world. Maybe this is a good sign. Like now, I need groceries. Part of me wants to go get them and part of me says it will wear me out too much and the thought of going and doing it and getting really worn down is very frightening. Everything seems so hard and scary. Maybe this is the first step forward? I guess what I will do is go to the chiropractor and then if I feel able to go to get groceries then I'll go. Some cottage cheese really sounds good! I'll just play it by ear and decide after my appt.

Okay, I feel better now. I'll report back on how it went. I'd better got get ready.

Oh, I washed my hair today! I knew I wanted to get this appt and my hair was a disaster. I had some energy, so I washed it. That is really exciting for me. Then I even styled it a little. I am seeing that when I get a little energy, the first thing I think of to do is work on the house. I need to change that! I need to work on me!!!  Shower, hair, exercising, healthy eating…these are the things I need to focus on first, not this darn house!

Okay, gotta run for now. Bye.

[sjess]

5 Months 22 Days

Well, I haven't written for a little while. Not because I have been too busy but because I haven't had anything to say–I know, that's hard to believe. 🙂  Things seem to be about the same.

I am coming up on the time to call Dr. S and report back to him on how I am doing. It will be good to hear what he thinks. He'll probably just tell me to keep being patient and wait.

I'm getting pretty :crying:  distressed about my back. Even a bit :angry:  that it is taking so long to heal. I have to walk with canes right now and it is quite painful. Hubby tells me to just keep going to the chiropractor until it gets better. I feel like this old body is falling apart! Thinking about the future is tough because of the fatigue. Seems that focusing on just today is the best thing to do. I have been reading in my new Personal Historian books and I also got some tapes from my brother that my Dad made of my grandparents talking about their lives, so that should be fun to listen to and transcribe. I'm glad I FINALLY definitely decided on this path and am sticking to it. It feels good to have something to focus on while I wait, and wait, and wait………

Have been having some pretty annoying heart palpitations. I see the heart doc in October, so I'll talk to him about it then.

So not much to report. Just gotta keep taking my Mino. My new alarm watch is very helpful to remind me to take my morning dose.

[sjess]

6 Months +

I had quite an ordeal with my back. I went to the chiropractor several times and then I ended up in so much pain I could barely walk. I postponed my chiropractor appt twice because I was in so much pain and decided to finally call him. He sent me to the medical doctor who gave me some Vicodin pain pills and sent me on to the new orthopedic surgen. The surgen took some xrays and said it looks like a muscle thing. He gave me some muscle relaxers and prescribed physical therapy. I have gone to three PT appts and I am doing so much better. Am not 100% yet, but can walk without canes most of the time. I haven't needed the pills for several days now. Yea! Am glad I went to the med doc for some good DRUGS! hehehe

The guys are in the fields now kicking up all kinds of dust and stuff and it is playing havoc with my allergies. My nose runs continuously, my eyes itch and it is even harder to breath. I take Allegra, but even that is just making it bearable.

Since my back is better, I worked around the house a little yesterday and today. Got some things done. That felt good. I got the dishes rinsed and in the dishwasher, cleared off the table, put my clothes away…well, you get the idea. Trouble is, I'm so weak from being inactive for about a year and overweight and out of shape that I can't do very much. I am just going to have to be patient with my body and start slowly and build up my stamina. I am hoping that as I am able to be more and more active the weight will start to come off. Also I've decided on being a personal historian and so focusing on that will help give me something to “be” and do. That should help the waistline as well.

I think I have been feeling a little bit better with regard to the fatigue. No huge improvements, but it seems like I am more alert and less depressed and am able to get myself up and doing things a little easier. It is still tough to get myself going some days, but other days not as tough.

I think it is about time to call Dr. S and report back to him and see what he says and find out the results of my tests. I haven't seen any bills yet, so hopefully insurance is covering the IVs. I wonder if I should have another round of IVs or just see if I improve. Will see what Dr. S has to say.

 

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