The Best Companion.

I hope everyone is doing OK.

I wanted to share with you all another love of mine, he is a big part of my life, he keeps me company, he loves me unconditionally, he wakes me when I’m having a turn, he comforts me when I’m feeling my worse, he is my companion and best friend, he is my dog, Buddy.

Without him in my life I would be lonely, he keeps me company when no ones home. At night some times, I have these turns I don’t know what they are, but he wakes me up by licking me. I know I have had a turn because I have a left facial droop when I get up from one.

He means the world to me. He helps in every aspect of my life, I’m so lucky to have him, he is the most patient and the calmest dog you could ask for.

Pets can be a great help in coping. If you have a pet I would love to hear?

I Can’t Stop My Struggles, It’s Just Me.

I hope everyone is doing OK.

Over the last week mentally I have been struggling, not only with my new diagnosis but just in general. Between going to doctors appointments and life, I have just hit a brick wall. When I get this point in my life I hit struggle street, what do I mean by struggle you ask.

Well, when I talk about a struggle, I talk about tasks. These tasks are near impossible to do, without a struggle. I fight my inner demons to do the simplest of tasks. if I don’t complete these tasks my inner demon becomes worse and I feel like it’s defeated me.

I still don’t understand why these tasks are so hard to accomplish when I’m in my hour of need. Why my mind feels the need to make me feel even worse than I already do, but it’s just the way the mind works.

I thought I would share some of my impossible tasks with you all so here we go:

  • brushing my teeth
  • showering
  • brushing my hair
  • eating
  • cleaning
  • answering the phone
  • getting out of bed
  • getting dressed
  • talking

Tasks like these are everyday tasks, but for someone like me when I’m at my lowest become the hardest tasks of my life. No matter how much you know you need to do it it’s just not possible to do. Unfortunately, this is part of my illness, but I wanted to share my struggle.

My Rare Condition.

I hope everyone is doing OK.

This is one blog that is hard for me to share as it is new and I’m trying to wrap my head around the diagnoses still, but this is my life. If you are a follower of my blog you would know I was admitted to hospital last week, as my GP was fearing the worse. Now to explain the fear that lead to the hospital that gave me my diagnosis.

It started with me going to the GP due to my head. I have been experiencing a lot of different issues which they believe are all connected to my head, but what’s caused all the issues they can’t explain. Then I experienced the worse issues I could have ever imagined, and that is indents in my scalp.

It honestly feels like my scalp is caving in on its self. My GP had no idea what was going on as I never had this before, so she rushed me to the hospital, The Doctors there had never seen it before. They ran bloods, did CT scans, 30-minute obs, every Specialist got called in the hospital till they got a Specialist who knew what it was.

The Diagnosis is Cutis Verticis Gyrata (CVG for short) it is where the scalp thickens and deep folds begin to form in the scalp it is described to look like a form of the brain. it happens in 0.026 in 100,00 of woman, and 1 in 100,000 men.

They are unsure of the underlining reason behind why I have it, so I will be tested more. There are so many unanswered questions, so many emotions, as well as the unknown.

At the moment I’m just trying to get my head around the diagnosis. My days are hard as I’m scared to touch my head, I don’t like the feeling and every day it’s growing. I don’t know what the future holds, but for now just getting through each and every day is the best I can do.

Hope you enjoyed, and if you have CVG I would love to hear from you.

Made To Feel Like Crap.

Hope everyone is doing OK.

This week was a hard week with being admitted to hospital for a couple of days being away from my family has brought my mood right down. The hospital experience was terrible and not having my family with me made it even worse.

I was admitted due to my GP getting worried over more issues arising from what she thought maybe my head she urgently rushed me to hospital. Once there I became the talk of the hospital (which I will explain in another blog). Specialist and doctors from everywhere were trying to work out what was wrong.

Unfortunately, I didn’t meet with very many nice ones, I am not the smallest person and do has some weight and struggle a lot with my weight, but I don’t need to be reminded of it every time doctors can’t find a reason from my issues.

While in there one of the doctors said straight to my face “you know maybe if you didn’t have the weight you wouldn’t have half the problems you have!”, I got these issues while I was small, not fat by the way, and do you really have to blame my weight for all my problems seriously. Most of the specialist and doctors were like that, it was heartbreaking coping with all that.

Also, they wouldn’t allow my family in, it was like I was a germ or something. No matter how many times I asked them if my family could come in they kept saying, “not now just hold off for the time being”. It was so hard mentally being there alone having all these strangers around. I just locked myself in my cubicle and stayed on my phone to my husband the whole time.

Now I’m home I’m worse mentally, I cry all the time, I feel sad and alone. It’s going to take me a lot to get over this, but I will get there in the end.

I’m Back

Hope everyone is doing OK.

It feels like forever since I wrote last, so I wanted to give you all an insight into the last week.

Firstly I would like to apologise to you all, as I was trying to work on my site and lost everything. I finally manage to get it recovered after help from my wonderful husband, helping by talking to the host site to get it finally fixed.

While getting my site fixed my health plummeted to the point I spent a couple of days in the hospital. I’m still not feeling the best with now getting a cold on top, but I will get there.

Life has taken an unexpected turn that I’m trying to get my head around, a new diagnosis, more tests. A whole new chapter to learn. One I will share with you all.

For now, I wanted to catch up and let you know I’m sorry and I’m back.

Stop Walking Away.

Hope everyone is doing OK.

I spent years trying to get better with no prevail, I lose hope in ever finding a way to get better when Doctors and Specialist throw their hands up and walk away when things get too hard.

I have spent the last 6 years trying to get answers to my condition with no luck. I just get Specialists using me as a guinea pig, trial medication after trial medication, then it’s “sorry we have no curer.” Well OK then, umm thanks. It’s not nice to be made to feel like that, you just want answers to why you are sick.

Yesterday I took a huge blow with my pain specialist even stepping back and saying she could no longer help. That hit me for a sixer, she also stated physio would be of no help either, so she cancelled all my physio appointments. The one person I didn’t see turning their back on me just did.

When you spend years working with someone you don’t expect them to just give up knowing what you have been through. It makes you feel like giving up too. When things get too hard for people they just walk, I wish it was that easy for me. Instead of walking away maybe they should put themselves in my shoes for one day.

The fight will continue, just hope one day I will find the answers I am looking for.

Ups and Downs

Hope everyone is doing ok.

This week has been a week full of its biggest ups and downs. I have struggled to understand why life has taken a turn, I always try to keep a positive look on each day, but I have been pushing myself to do that.

I know a lot of my issues boil down to my health and what my future months hold. The financial strain it has put on my family, with my husband having to stay home to look after me.

My dream to share my life and help others with my blog almost ended due to financial issues. My site got shutdown till I paid.

Not having my blog felt like I lost my soul, my place of comfort. It was the longest week ever I couldn’t handle not having my blog, it’s a big part of me and my healing process.

I hope I didn’t fail anyone by having this happen, I will make sure I keep it well paid in advance.

So much has happened it hasn’t been easy, but I’m getting there.

Thanks for reading

Appreciating The Smallest Things.

Hope everyone is doing OK.

When I sit and think about how my life has turned out, I have to think how much it made me change as a person. As much as I hate what happened to me, it has made me appreciate things a lot more. Things I use to take for granted I would only wish I never took for granted. Like the small things that I accomplish now I appreciate so much more.

Just going out in the sun is a hard task as I am sensitive to light, not only are my eyes sensitive that cause my migraines to become more intense, but my skin has become more sensitive to the sun due to the medication I take I burn in as little as 20 minutes, so I need to be very careful.

I would never wish my life on anyone, as it’s not easy to live, but this is the life I was given and it has made me appreciate the smallest things in life. I treasure my children and every milestone they make. I take one day as it comes and appreciate each and every day I’m here.

Just being told that you are special or that you are loved is a small thing, but it means so much, these are small things in life that need to be appreciated more.

Thanks for reading.

Sorry Mr Physio.

Hope everyone is doing ok.

Today was a day I needed, but a day I don’t think my physio needed or even expected. I went in for a much needed session today as my body has been killing me. The pain has become quite unbearable these days, but thank god for my physio. He is a blessing.

Today for him was not his day. I’m usually quite the pleasant person, where you can’t tell if I’m ok or not, but today I couldn’t hold in how I was feeling. My physio was quite taken back.

He stated that he was shocked to see me so angry, and that what ever he did wouldn’t take any effect with me being so uptight. Which I know doesn’t help in the least.

Well that’s all he had to say for me to break down. Everything has just got to me over the last few weeks that I couldn’t cope anymore. I do feel a lot better getting it out, but I feel terrible it happened there.

At the end of the day we can’t always be brave can we.

Sorry Mr Physio ?.

Thinking of Medication.

Hope everyone is doing OK.

I remember back to when I first thought about taking medication, I was so frustrated with the thought of living on medication for the rest of my life. I know back then I didn’t want to rely on medication to keep me going, but now after living on medication, I don’t know how I ever lived without it.

When changing from medication to new medication its when I see what it does for me and how it works. It can be quite frustrating when your medication doesn’t work anymore, as your body either gets used to the medication or your condition changes.

When I think about it I am so grateful that I don’t have to endure feeling the way I do so excessively because there is such a thing out there like medication to help dull the feelings.

If you’re ever contemplating taking medication. think about how you would benefit in the long run, you don’t need to suffer.