Hope for MCTD/IPF

[sjess]

I have just found out about AP and am so excited to have some hope again. I called Dr. S and have an appointment with him on January 25th.

I am really needing something to help me because I feel like my body is going downhill quickly now. I am not able to do regular household tasks or personal hygiene. I have had to hire help for these things. I am too out of breath (33% lung function), too weak and in too much pain (back/right hip/left shoulder) to do these things for myself. I am depressed and fatigued. I have gained some 70 pounds because I eat out of depression and I am not active at all. I used to walk and play tennis, now it's a challenge to put my shoes on.

I'm hopeful AP will change things for me and I plan on keeping track of my treatment here.

[sjess]

My medical history–

In 1985 I was diagnosed with Graves Disease (overactive thyroid). I was treated with prednisone and recovered quickly. I was told that I could develop a related disease such as lupus, but I thought the doctor was just being pessimistic. I was in remission for 5 years.

In 1990 I began experiencing fatigue and severe shoulder joint pain. Graves Disease was ruled out as the cause. My thyroid doctor suspected that I had lupus and sent me to a rheumatologist. After a year of unrelenting, excrutiating, migrating joint pain and Raynauds, I was finally diagnosed with lupus.

Over the next 18 years, Prednisone, Plaquenil, Methotrexate, CellCept, and other medications were prescribed. It was determined that I have esophagus involvement resulting in severe acid reflux and lung involvement. As a result of these new symptoms, my diagnosis was changed to MCTD. I got along with the drugs okay until 2008, although I have experienced terrible side effects including steriod psychosis, depression/anxiety, and osteoporosis.

My lung function test dropped in 2008, and so the doctors recommended I take Cytoxan. So I did. The Cytoxan was very hard on me and I quit taking it after six months and decided to take a break from these toxic drugs because I felt like I was dying.

I struggle now with chronic fatigue, chronic shortness of breath (I'm on oxygen all the time), depression, acid reflux, and flares that feel like I have a bad case of the flu. Thankfully my joint pains are fairly well controlled (except my low back and right hip) as is the Raynauds. My quality of life is poor and every day is a struggle of will. I have had to hire help to keep up with the housework and for personal hygeine. I have an extremely limited social life and am nearly homebound.  I have also developed allergies and asthma and take medications for these as well as for the reflux and depression/anxiety.

In December of 2009 I found out about AP and decided to try it. Currently, I am waiting to see an AP doctor.

[sjess]

I'm in really bad shape. Greasy hair, 100 lbs. overweight, haven't had a shower in weeks, and no gumption to do anything. I can't count how many times I've been down and gotten back up…I feel like I'm just about down for the count nowadays. Gotta be strong and hang in there. Help is on the way.

I'm reading The New Arthritis Breakthrough. I hope to have that read and have gathered together my medical history for the good doctor when I see him in 2 weeks. I think I have all the data, I just have to cull through it and put it together. I'm also going to see if someone from public health nursing can come to my house to give me my infusions–the roads are covered with snow and ice right now.

I've started taking probiotics and have ordered NAC per the suggestions on this website. Also am taking vitamins again. The probiotics seem to make my tummy feel better. Real food just does not sound good, but I eat it anyway…good grief! :headbang:  Might try fasting for awhile. Sometimes that helps.

 

[sjess]

Been having to sleep most of the time the past 2 days. I woke up this evening and my back/hip pain was practically gone. Now as I look back, this has happened to me in the past and I determined that it was due to the MCTD…why do I keep forgetting? Lately I feel like I'm in what others here call a “brain fog”. This time the back/hip pain was worse than in the past. Dr. Brown mentions that in his book. Reading his book has cleared up a lot for me.

Am wondering too if perhaps I have a sinus infection. My cheeks are tender and feel pressure and I've had a headache for several days :doh: and I still feel stms. :sick:

Just over a week now before I go see Dr. S. I see Rett. on Monday. Am wondering how that will go.

Am starting to feel angry, but a good angry. Anger to get better and beat this infection. Before, I kept feeling so guilty, like I was to blame for being ill because I didn't have the right thoughts or attitudes or whatever. Feel so much relief to know it is an INFECTION and not me! I don't have to fix me, I need medicine. It is taking awhile to sink in, but it feels real good :dude:.

Karen comes tomorrow. Will finally get a bath. Boy do I need it. Then I won't have to worry about getting myself ready for Monday. I can't believe how weak I feel. This is not good and it scares me. 😕

[sjess]

Still feeling pretty weak. Just getting up and walking around the house is exercise.

My “infusion sweater” arrived today. I don't have much to wear since I've gained weight, so I bought a new sweater to wear to my appt with Dr. S and to my infusions so I don't have to wear an old sweatshirt. I splurged and bought a nice LLBean zip-up sweater. Hopefully my jeans will still fit–uggh! :headbang:

Have called the hospital and public nursing and it sounds like I have several options if Dr. S has me do the AP IV to start with. A little over a week to go now. Hubby has concerns about me doing the AP. I hope Dr. S can alleviate those.

So far the weather forcast looks good. It's now in the mid-30s.

I'm finding it helps to journal and read other posts. I'm kinda in a holding pattern right now waiting for my appt. Still reading in the book. Printed out some info from this site to take to my rheum Monday and to read. Great info here. I really hope I respond well to the treatments. I really responded to the prednisone, so hopefully I will to the antibiotics too. I hope I'm not allergic to it!!! Am allergic to sulfa drugs, but I'm pretty sure tetracycline is a different drug than the sulfas.

Guess that's it for now. Gotta keep my mind busy. Think I'll email J&M about AP so they know. Gotta tell Bet too.

Later…

Got my bath. Feels much cleaner. Washed hair 3x to get it good and clean. Tired, but feel much better.

10 days and counting…

 

 

[sjess]

Tried on my infusion sweater today. It fits just fine with room to spare…just how I like 'em.

My spirits are more up today. Had a nice evisit with Eric after feeling bad about an econversation with Caleb on Nathan's facebook. Hope getting stressed over that doesn't cause me to flare. Thought I would add that here just in case it does. But, ya can't avoid every stress in life. I think I had to get that conversation out of my system. Maybe it will bring me some peace.

Well, I'm very pleased that I got a lot done today on my medical info notebook to take to Dr. S. I have the CT scan written results and my lung function test results in it and I made a table with MS Word of the LF results so he can see the numbers all together. I thought about making a graph, but really don't need to. Everything was pretty stable until around 2007 when I had a drop. Before I was running 40-50%, now I'm running 30-40%. I'm due for tests again. BTW, I need to reschedule lung doc appt that I cancelled due to illness.

I'm eating less, thank goodness. Maybe I'll fit in those jeans afterall!

 

 

[sjess]

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

My spirits are more up today. 

Just realized as I was looking back at earlier posts that my headache is gone and I'm no longer sick to my stomach. No wonder my spirits are up! This journal is really gonna help. 😎

[sjess]

After making that table of my PFTs yesterday, I realized that the drop in my lung function occurred right after a particularily stressful time in my life starting in mid-2006.

1. Father-in-law passed away (2004) and stressful after-effects @ home [/*:15o0ioln]
2. Extreme mental/emotional/spiritual stress due to a recurrance of steriod psychosis following church ordeal (mid-2006) [/*:15o0ioln]
3. Weight loss and then weight gain of 100lbs. due to psychosis

[/*]
I suppose it's no wonder the disease became more active after all that happened around that time. Then the cytoxan (late 2008-2/09) took all my energy away so that I felt like I was going to die 😯

The last few years have not been real great 😕

I feel much better today. 🙂  I think I have some sinus drainage resulting in a light cough, but nothing major.

This journaling is great. It is helping me to feel more on top of things and to wrap my brain around what is going on.  Yea! 😉

Later…

Well, Goldie would not be put off today so I finally got up and out and took her for a walk. It was up to 40 degrees and sunshiny. I am continually amazed at what I will do for her. What a blessing she is.

Tomorrow I go see my rheumy. 😛 

Final note…

Might try to get off the Ambien this week. I'm quitting prednisone (was only taking 2mg when the mood struck me), so I shouldn't need the Ambien anymore. Might take awhile to get readjusted, but that would be one less thing causing drowsiness.

I've been facebooking with Suzanne. She has shown interest in AP as I'm writing about it on my facebook page. Shot Michelle's testimony over to her from Inspire for inspiration. Hope she decides to try it too.

[sjess]

Saw Rett today. He was cool with the whole AP thing. Didn't think it would help, but said it wouldn't hurt me. He was even willing to prescribe the minocycline!

He was against the IV though. Will see if I can just do the oral from Dr. S. Hubby thinks I should skip the IV because of what Rett said. I'm conflicted. I just want to get better.

Bought myself a “Believe” bracelet today to remind me to keep the faith in AP. The people on this site really help with that too!

Going to DM wore me out. I'm feeling chilled. It's hard to get warm. I rested when I got back. My chest feels tight too. Ate at Long John Silver's. Maybe try eating somewhere else next time down there. Feel a little erpy too…but oh that grease is so good. :doh:

[sjess]

Man, talk about a wasted day. I got very little done. Just have no energy and no ambition. :sick:  I tried reading some of the Road Back book, but couldn't concentrate. I'm not sure I will have that all read by my appt.

Thought I might work on my notebook for Dr. S this afternoon, but took a nap instead. This fatigue is unrelenting. The trip to DM yesterday wore me out. It always takes awhile to get my strength back. This disease really sucks!

I'm kinda stressing about the IV thing too. I asked hubby to stay open to the possibility of doing the IV since Dr. S has had better outcomes with those who start that way. I really wish I didn't have this darn thing to deal with. Wish it would just go away. :doh:  And I hate it when hubby and I aren't on the same page. I know he is looking out for me as best he can. He just doesn't want anything to happen to me.

At times I feel like I've taken all I can take. Is that possible? :crying:  For 20 years I've just dealt with it. Now, all of a sudden, it seems so difficult. What has changed…is it just that I'm older now? Is the disease getting worse? Maybe the disease has eroded my resolve. I don't like it.

Then I look at my beautiful little dog and think about my wonderful husband and I remind myself I've got it pretty good. Got a roof over my head, I'm warm when it's cold outside, I'm cool when it's warm outside, I've got clothes to wear, an adjustable bed, I don't have any financial problems…I have everything I need and more. My biggest problem (other than being ill and overweight) is that I have too much stuff. (When did I take up shopping as a recreational sport?) A lot of people would be glad to have that kind of problem.

Yeah, this disease sucks, but there are others suffering as much or more than I. Guess that puts a different light on things.

 

[sjess]

I edited post number 2 adding my general medical history.

Am finally warmer. We've been without electricity for over two days and are now at Betty's running the generator. I really got chilled. Hope I don't flare from all this, but probably will. :headbang:

Will have to postpone my visit with Dr. S due to the icy weather and wide spread outages. Am sad, but am more concerned about my present situation, so not terribly down.

 

[sjess]

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

Might try to get off the Ambien this week.

Decided to not go off Ambien just yet. Steve wants me to wait and not make several changes at the same time. Good idea.

Am up at Betty's house. No power anywhere yet. This is a real mess. Ice has melted, though. Thank goodness for the generator.

Going to try to make myself figure the checkbook and pay bills.  I am really hoping the AP will make it so that I don't have to make myself do things, but rather have the energy to just do what I need to do. 😕

[sjess]

Still at Betty's house running the generator. Starting Day 5 without power. There are line crews from all over here in our little berg and it is still a mess out there. So glad we have someplace warm where my whole family can go…including Goldie.

I've been hesitant to write this, but I think I need to. I am going to start changing how I deal with food. I've come up with a food plan I think I can live with and I need to start doing some kind of light exercise. I was waiting to start my exercising after I felt better from AP, but now having to wait longer to get in to see Dr. S I'm thinking I should just get started. I really need to do this. I don't recognize myself in the mirror anymore I've gained so much weight. I gotta do something, even if it is just a little bit.

I walked past Betty's bowl of chocolates without eating one…that's a start. Think I'll try to get outside and go for a short, slow walk today. The sun is shining and the ice is nearly gone. It will be good to get out, good for the lungs and good for my mood. Another thing I need to do is to get going on a project. I'm eating out of boredom and depression. Drink water and get busy. Maybe put the upstairs heater on a timer so it is nice and toasty upstairs where I'm ready to do my scrapbooking. Then I won't have to face that climb upstairs and a freezing cold room at the top.

I'm really glad to have this place were I can journal.

Stood up to hubby today on something I felt was unfair and I did it nicely and we didn't get in an argument. Am proud of myself. At least that injustice (IMO) isn't festering inside. I think a person needs to get stuff out somehow–the good energy and the negative energy; that's just life! I was brought up to think you keep the negative to yourself. I've learned that is not healthy. Let it out–without doing harm of course.

I think I'm going to printout some maps of how to get to Dr. S just in case we end up going. Also better p/o his phone number in case we end up not going. Good to be prepared. 😉

Later…

Well, I didn't get a walk in, but I did get the checkbook figured and the bills paid. Yay! That is a relief to have done. (Except I have two more to pay when I can get some envelopes from home–it's a pain to be away from my house!)

Later…

Good news: the power is back on at home. Will move back in tomorrow. Called Dr. S and told him I couldn't make it to my appt. tomorrow. He was very understanding. Will reschedule asap.  

My wrist and hand joints are starting to hurt as are my feet joints. Mostly just achy right now with some stiffness. I quit taking prednisone last Tuesday. Perhaps the little bit I was taking was enough to keep joints from hurting. My back and right hip are still bothering me a lot.

[sjess]

Was worried about my joints, but they are not achy today. My back is even better today (tho not 100%). Perhaps it is the weather/barometric pressure.

Was able to do a few things today. Did some scrapbooking (actually I played with a new embossing gadget I got for Christmas), and I practiced singing for the nursing home. Have finally decided to focus on being a personal historian. If I get better, I will be glad to have something to do from home as an occupation.

It took a few days, but I think I'm recovering from my no-power ordeal. Am getting warmed up and getting some energy back. 😛 

Time to call Dr. S and get another appt. :roll-laugh:  Hope he can see me on the 15th. Will find out.

 
Haven't had any Mt. Dew for several days now–Yay! 😎

[sjess]

It feels so good to have decided on what to do with my life! I've been vascillating from one occupation to another for way too long. Now I feel more focused and am starting to pursue filling in the gaps of what I will need to have and what I will need to know with regard to being a Personal Historian.

I ordered the Family Tree Maker software to enter genealogy info into and a book on digital photography so that I can be more knowledgeable about photographing and videotaping clients. Am also checking into what is available on the web as far as information about being a PH. Deciding this has really helped lift my spirits as have some wonderful people from this website whom I am so thankful for! :blush:  I also have a Christmas gift certificate for B&H Photo that I can use to get what equipment I might need–especially lighting for videotaping.

So, my spirits are much better today. My back was hurting this morning, but two Darvocet seem to have helped that. I'm trying to sleep with my bed less inclined hoping that will be better for my back.

I still haven't called Dr. S. Will endeavor to accomplish that tomorrow. I hope he can see me on Feb. 15th.

Am trying not to stress over not getting things done around the house and just roll with it. It's not easy for me, but I am getting better at it. 😉 

I have a hair appt. tomorrow afternoon. Hope I am up to going and then doing a little shopping afterward for groceries. It will be good to get out, but it's supposed to be quite cold.

Got a call from Deb at the nursing home and have a date set to sing there the end of February. I told her that I am hoping to be starting a new treatment with antibiotics and don't know how it will affect me. She was very understanding and said to just let her know if I can't make it.

Well, that's my exciting life :).  I did give in and had one Mt. Dew today, but that's not bad considering how much I have been drinking. Hope to get the foods I need to start my new eating regime tomorrow.
 

Be happy! :blush:

My singing website address is:  http://web.mac.com/s.jess

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