30 day chronic illness challenge

Day 19

Thinking about the future can be tough. As any physical stress seems to be a trigger for me, the things associated with aging can be a big problem. Things are also very unpredictable and throw in my current lack of income and the future can be a bit of an ominous question mark.

There are good things about the future too. I really think a subcutaneous version of what I use to prevent attacks via IV will come out soon-ish (years though, not months). Not only will this make administering it so much easier, but the level in my blood should also be more steady with it.

In general, treatments and medications will improve overtime and some cures may even be found.

Day 20

I have met others with HAE. Most of them are online, but I have met someone once at a clinic and I also attended an info session where many people travelled from out of town to be there. I wish there was an in-person support group as I do find it helpful!

With many of the HAE people I often do feel a bit of an outsider as most of them have family who have it too. I've only met others who have a de novo mutation online. Maybe one day I will make it to a conference where I can meet others who didn't grow up knowing, even if it was in a sense of just the symptoms and not the diagnosis, in person.

I feel like I have had a rough week. But when I get on this site, I think of how much God has blessed me and I feel so much better. Helping other people through stukk always makes me feel better. 😌

Day 10 : What little things made your life easier?

Honestly it was the privacy my husband and my kids gave me. My kids never demanded or burdened me in anyway when I was not well. My kids inspired me to overcome the obstacles I built in my mind. I wanted to be a fully functioning person instead of hiding in my bedroom or being fearful of the pain. My husband was not sure how to handle my illness at first but when he found his footing, he was there to hold my hand and be my rock. I love my husband and my kids so much for who they are. These made my life easier.

Day 21

For information, I actually read quite a few academic journals, mostly found via pubmed and I pulled out some textbooks to relook at the complement system. Wikipedia is useful, along with googling to get some general info (none of my textbooks got into bradykinin as it relates to HAE). There are also HAE organizations - HAE Canada, HAEA and HAEi are the 3 I go to the most, but there are others as well.

For connecting with others all the online active groups that I'm aware of that also allow me to join are on FB. I've also attended info sessions, online and in person and did a phone connection with someone via a HAEA resource.

Day 11: Why do you believe you have this illness? Bad luck, a higher power or something else?

In the earlier days, I used to be angry with everyone who have and is causing me stress. I felt they were the reason for my illness. But as I reflected and understood more about myself and my illness, I accepted it's my responses and thinking patterns that I have to change. I took responsibility for myself. I don't think it's bad luck but rather a bodily dent. Like a warning to be more careful before I end up in a massive accident. Occasionaly , I have wondered if "the higher power person" expected me to go through this illness to learn something about life but most of the time now, I just accept it and try to move forward. In many ways my illness has changed me and my family in positive ways inspite of the struggle I go through. I am grateful for this new strength I have. It came to me when I was at my lowest and I value this new faith I have.

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Day 1:

Introduce yourself: I have been coming here often, to admire the strength of character of people who share so openly here. Never was I able to make myself type it though - probably still not past denial. Today I missed work and stayed home and made myself come here. I have been a listener but only just made a member account - it takes more courage to talk than listen. For everyone who has spoken up, let it out, here or in other places - you must know, you are an inspiration.

Of the various ailments I have - the one that I am here to talk about is my weak lumbar disc that keeps slipping. It does so every 3-4 months (if I am lucky). I have had it since the past 4 years but it seems like forever (I am in my late 20s now). When it gets that bad, it is bad such that it hurts to turn in bed - it hurts to lie down in any position at all. Sitting is a big trigger and how do you get through the day without sitting? It hurts to bend, to wear your clothes or to tie your laces (a sneeze is something that must be fought off)... there is pain and there is helplessness.. not sure which hurts more. One bad time it was like this for almost two weeks. Today, I am grateful to be able to turn without too much pain and I manage to wear my clothes without too much pain too. The pain does not silence the questions... is this chronic? why am I posting it in chronic illnesses? does writing it here make it more real? Is it anyways going to be less real keeping it in? it has only been a couple of years and few more - maybe it will pass? maybe someone here might have a pain management learning to share? maybe I can help someone suffering from something like this and figuring out how to figure it out? I am going to click on add post real soon. Before that I must again say... to all the lovely members especially... that they are an amazing inspiration. Sometimes I wish I could write a review for them to show the amazing work they do! Once, a very special member told me - there is great unity in pain... it drives away lonliness... took awhile to get that one. I hope sharing this would do that for someone.

Day 1 I feel good helping people

Day 12: Briefly explain to a healthy person what it is like to live with this illness?

It starts with lots of perspiration, followed by tingling feeling and after a week the burning feeling starts then the skin turns red like it has been burnt. During it's peak , even a small heat rash feels like a huge boil. The pain is similar to having a big card on the skin. Since it effects my lower abdomen and hip, I can't wear undergarments ,tight pants, jeans and so on. I can't sit as the area that comes in contact with the chair is effected , so I lie down on my stomach for a few days, I avoid sitting down cause the skin hurts so much like it is splitting.i also have to avoid the sun or heat cause it agrevates the skin and the burning sensation. I still have to travel to work , be an active employee, manage my kids, be a mother and a spouse. I have so much of pain even when my kids sat on my lap.I usually put on my clothes with tears in my eyes because it hurts when they come in contact with my skin. After the second to third week, the redness slowly reducess and for the next two weeks, I have to cope with the continuous burning sensation as my sensory around the effected area would have gone haywire. I have to start all over again to manage and recondition my sensory system. Because I avoid sitting in a position to minimize the impact on the effected part, I put so much of stress on my back , on my legs especially my feet. During this attack, I avoid sitting down in my workplace. I spend most of my time walking around and standing. If I do sit , I sit on the cold floor cause at least the chilness numbs my pain. I got lots of weird looks from my colleague but I managed my career well.

Day 1:

I have fibromyalgia and Lyme disease... Possibly other undiagnosed conditions.

I've had fibro my whole life. And Lyme disease for almost 13 years.