These are a few of my favorite things...

These are a few of my <least> favorite things...

Sorry to take some time on this forum to gripe, but I feel like those of us struggling with various health conditions are sometimes afraid to mention some of the things we have to deal with. I'm tired of "hiding" and just going by the names of the various diagnoses I've had through the years. All the symptoms are even starting to run together at this point to where I don't know what issue is causing what symptom anymore.



Nonetheless, I'm tired of:

• having to spit out mouthfuls of blood every time I brush my teeth [this pic was after I'd used cold water to try to slow down the bleeding]
• bruising very easily at times [I never know where the next bruise is going to pop up or how bad it is going to look and how long it will last.]
• excess layers of skin forming to the point it starts cracking
• suffering from severe headaches that can often strike with no warning
• issues that affect my vision - from the headaches to nerve palsies that are triggered to reduced peripheral vision
• dealing with the pain at the varying degrees, to the point it is now affecting my concentration and memory

In all Honesty...

...I hate living in pain every day.

Yes, I am throwing a bit of a pity party today. I know it could always be worse so I don't like talking about the pain and issues I go through very much. However, not talking about it doesn't mean that it's not there. I can't deny it. Maybe talking about it can encourage some others because they will realize they are not the only ones and they are not "crazy" and the pain is not just "in their heads."

It is real; the symptoms that we experience do exist!



I couldn't tell you what the root cause of my problems any more. I do know that at this point I have a running list of diagnoses:

• Fibromyalgia
• CREST (limited scleroderma; type of RA)
• Chronic Sinusitis and Allergies
• Nerve Palsy
• Vocal Cord Dysfunction / Paradoxical Vocal Cord Motion

I've also been tested for Myasthenia Gravis by multiple neurologists (on their decision, without my ever stating that I had been tested for it previously, etc). Based on some things I have read, I think this might even explain some issues we had with our daughter after she was born. However, every neurologist has only done the nerve conduction/stimulation test and quit looking into it after those results are not definitive or "negative." Maybe it really is just the nerve palsy that causes the intermittent eye dropping and vision problems. Maybe it is just the PVCM, which I wasn't diagnosed with until this year, that causes the issues with swallowing, etc. Who knows why I feel like I struggle to hold my neck up and feel like I can barely move my arms and legs at times. I'm not the doctor and can't diagnose myself, but this condition keeps coming up during visits with various doctors across the past 10 years...but I can't add it to my list yet.

I used to think I would end up getting the right combination of doctors and medication and all my problems would be solved. Now, I realize I have to come to terms with my new "normal" and my current limitations. I can try to push, but I pay for it dearly. During the last months I was at work, I was miserable. I wouldn't accomplish much of my duties during the day while I was pushing myself to "be at work." I would then come home and quickly realize how much of a "mess" I was in as I would end up shaking, teeth chattering, nauseous, and crying because of the amount of pain I was now in merely due to the fact that I had gone to work that day...not even that I had done that much. Now, the mere act of dropping my daughter off at school can still be enough to set off an extreme bout of pain. Oftentimes, I will return home from dropping her off and it's as if all the nerves in my body are firing at once. (Have you ever had a migraine? You know the pain you get in your head at the slightest hint of light, sound, etc? Imagine that type of pain radiating throughout your entire body...not just certain points in your head!) There are still days I get to the point that I think I can't take it any more.

Admitting what I go through is still hard, and typing about it (both the physical act and the act of making my admission more public) is even worse. I hope just getting my thoughts out will help someone. At the very least, maybe this will offer at least a bit of catharsis.

This is all I can do for the day, but I will try to start posting more again, whether it's about my issues or something else.

Please let me know if this helps you. I'd also like for you to share in the comments if you experience similar symptoms, etc.

Chronic Pain

As I continue to struggle with pain, I'm also noticing changes in my attitude and behavior. It's amazing how much pain can changes one's life.

I'm finding that it's affecting my relationship with others, even beyond my interaction with my husband and daughter that I touched on in an earlier post. I wasn't very outgoing to begin with, but now I don't really want to go out in a group. I also don't want to carry on conversations with others; this one really bothers me, but I know where it stems from. Over the past year, especially with my husbands help, I've realized how often I say the wrong thing. This just adds another magnitude on to my ongoing struggle of not being able to remember common, simple words (like towel, dog, diaper, etc) from time-to-time. Who knows how many times I've misspoke at work or in some other situation where my husband wasn't even around to try to correct me. I hate it, and the really bad thing is that I've even noticed it starting to happen when I type, too. I now have to try to proofread anything I type at least a couple times, and there are still times when I send or post something just to realize that I typed something wrong at a later time. Also, I used to enjoy the fact that I my written word came out "more intelligent" than my spoken word…that's quickly becoming a thing of the past, too. Ugh! I really don't like this.

Ok, beyond noticing that I'm becoming a bit reclusive :o), I'm starting to get a temper and become very short with people…including my daughter. What?! I know she's just 17 months (today as a matter of fact), and I love observing her as she is learning from her surroundings. I also know that she gets frustrated easily because she can't communicate everything she wants to, and she can't do everything she wants to do either. Her frustrations combined with how short-fused I'm starting to be, especially on days that I'm really struggling, are not meshing very well right now. Take last night for example, I ended up so frustrated and mad at myself it wasn't funny. I was trying to feed Trinity supper. After a few bites of the mac-and-cheese I'd heated up for her she started getting antsy and wanting down. Because of how she'd been acting, I knew she was hungry so I kept trying to get her to eat. I was even letting her feed herself, which is her new favorite thing to do. When she started wiggling around, I started "helping" her with the spoon. Pretty soon, she was waving her free hand up and down at me. She pulled the hand with the spoon away from mine and flung it to the floor and then batted the bowl of mac-and-cheese down, too (not before sticking her whole hand in the middle of the food). Then she was really waiving her arms around, mac-and-cheese flying off her hand in the process. I ended up spanking her before I even caught myself. Yes, that ended her fit, but that's not what I should've done. After she quit crying and totally calmed down, I realized her "fit" was the only way she knew at the time to try to tell me she wanted something besides the mac-and-cheese. Why did I do that instead of taking the time to figure out why she was frustrated (which is what I normally do)? Like I said, I was very mad at myself for doing this. I was in tears last night, and I'm even starting to tear up as I write this now.

I so want to find something that will stop the pain I'm dealing with. I know other people suffer through even worse things, and I honestly think that may be why I'm still finding the strength to fight this every day. I just continue to try to thank God for the day He has given me and find blessings each day. But that still doesn't stop (or reverse) the changes I'm seeing in myself.

I'm really getting to the point where I just want to lock myself in a room on my really bad days. Even though, most days, I am so exhausted I just feel like I want to go to bed as soon as I put Trinity to bed, I really think I'm going to have to start doing more research into Fibromyalgia, Limited Scleroderma, and chronic pain on my own. Maybe, just maybe, I'll find something that might help.

Living with CREST

Here's a good article I found that summarizes limited Scleroderma (CREST). It also briefly talks about some treatments options and things to do at home.

I don't talk about this much, but this is what I struggle with on a daily basis.

Today, I got some news that I may be showing signs of one of the worst complications - lung damage. I'm waiting for the dr's office to call me back with an appointment date for new lung tests. If the results of that test show further deterioration of my lung function, I will get to add a pulmonologist to the list of dr's/specialists I regularly see.

I'm trying to not get too down about this news, yet. Right now, until I get the new test, there's not really anything to get too worried about. Also, regardless of what that news may be, I'm going to try my best to rest in God. I know that He has my life in His hands. He has a plan for me. It's just very unnerving to get this news with an 8 1/2 month old at home. I guess it's just the pessimist coming out in me, but this afternoon I find myself continually jumping to the worst case scenario and thinking of how that would be on my family (child, husband, parents, etc).

I really just need to quit thinking of all the what if's right now. I'm going to try...

As I get more news on this, I'll keep you updated.

On a lighter note, Sweet T is getting her first tooth. It's through the gum, but not up enough that you can see it unless you get her laughing and look directly down at it.