And so it goes…

Seasons of joy

Seasons of joy

It has been some time since I last made a health update, and so I felt that it was the time to do so 🙂

I have had a few neurology appointments since the last update. I had discovered several genetic mutations that showed strong links to my health problems and I had high hopes that there would be some interest in the findings when I could meet with my neurologist. I studied for two whole weeks and made copies of the most important information for my doctors to have as it is not something I expect them to be experts on off the cuff. Sadly my neurologist doesn’t feel inclined to read that information or help me in the areas that is proven to cause neurological implications. I went home 2 months ago feeling pretty let down that I would have to continue that path alone.

I was sent home with an added daily medication though and a follow up for 2 months later. Since then I have been to the neurologist again and did not have high expectations. The appointment went just as I expected… and I am having the dose of the new daily medication increased and must report back in 2 months time.

The new daily is  called Effexor; or as a generic Venlafaxine. The one thing I have experienced noticeably was milder migraines since beginning the new medication in combination with my daily amatriptyline. It has not lessened their frequency, nor eliminated the need for sumatriptan. Which is why we are attempting an increased dose of the medication for the time being. I do get hot flashes from the venlafaxine though and if that becomes unbearable then we will look into trying other medications and quit using venlafaxine.

It has been odd to experience so many symptoms that are similar to going through menopause. I am only 29 years old and I honestly do not feel 29 ever. I feel older…. much older.  I look at myself before I put any makeup on and often sigh. I know other people look at me and see a young woman. I see more than that because of the scars and skin issues…. all the things I do my best to hide with makeup. Not because I am ashamed of how I look or afraid of what people would think or say…. just simply because I prefer to not be noticed for how poorly I look without my makeup. I don’t want people stopping me in public asking if I feel alright. I rarely leave home without makeup because of this having happened before when I forget to wear something like blush or mascara. It is just easier to go around blending in with the crowd. I also rarely wear swimwear or ever wear bikini swimwear due to my scars. It is not the kind of thing I am at all ashamed of but I just do not feel like being on display. It is just simpler if nobody can see these sides of me.

The main thing is to find a new normal… to find what makes life more comfortable when there is so much happening that you cannot control. On decent days, I can feel more normal if I put on my makeup and get out of the house for a bit. I can go and not focus on how I feel nauseated or exhausted. I can visit, laugh, cry, pray, and maybe even dare eat something  lol But it is so nice to get out there and join in on life rather than laying in bed with prayers of mercy.

I have no idea where life is going for me though. I am taking it one day at a time and praying there is hope for less pain as I learn about myself. I am afraid of getting older if my body already feels more in-line with a 75 year old. I find myself able to understand and sympathize with the elderly who are just beginning to feel the things I have felt for over 10 years. Some things that I never knew were abnormal for my age because I had always dealt with them. There is so much to deal with emotionally when your body is so different from early on in life. Times when I hate it and just wish I was able to be free of it; other times when I am glad to be able to help another who is new to the pain or just needs to not be alone in their pain anymore.

But I am learning. I am praying and receiving God’s grace despite what I ask for in prayer. I know that He has plans for me and I will do my best to be patient and say yes to His plans. To lead my life less fearfully or pitifully. There is a season for all things and I will continue to do my best to embrace them all~


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