This is going to be a personal post...probably too personal...but due. So if you're here for cookies and my usual cheer I'm actually (and I mean sincerely) sorry. I would love nothing more than to have beautiful cookies to show you. And if other people's personal stuff makes you all "eeeehh" then ya might want to skip today.....
Anyway....on a related note.....
I'm sorry about the lack of posts.
I actually didn't intend to stop posting at all. I had some seriously (if I'm allowed to flatter myself) GORGEOUS designs ready for Christmas and some I never finished for fall. Still have them sketched sitting on my workbench....looking at me sadly....another year gone by and they have yet to be brought to life.
I had all these things I wanted to do on the blog for the season. Pretty much thought I had a handle on whatever was making me feel ill. Surely we were nearing the end of the tunnel and I would start feeling better soon.
I've been sick for 7 months now. And not in an obvious sick way either......and no ....my mental capacities are not in danger. I'm perfectly sound (or as sound as I've always been).
Sure there's the obvious reasons for not posting as often as I should. I have a baby who is 9 months old now. Starting to walk. I can't keep up with him. Just stop trying to grow up so fast little guy. He's like me. Which means I'm in for it. I have a 5 year old daughter who's sweet as candy even if she is a chatter box. She's discovered the temporary "virtues" of lying and started to test to see what she can get away with lately. But this is all per usual. It's part of the mom gig and all moms go through this. My children are still the light in my world.
But 7 months. 7 months of terrifying chest pain. Pain that's been intensifying and starting to spread throughout my entire body. First just the upper body. This week it's spread to my hips. And my head.....I can't even remember when that started. My thinking is fogged, my balance is compromised. The pain that runs through my arms and hands is almost unbearable. Narcotics merely dull it. And I can't stay on them forever. I wouldn't want to stay on the forever...or any longer than I have to to make it through one night.
I can't take any strong pain killers during the day. I have kids...so I rely on Advil...and God...praying I can hold back tears in front of my daughter till Dad gets home and I can take something stronger.
I personally don't think pain killers and I have ever really been chummy anyway. I don't like my clarity being compromised and they make me nauseous. So that's that.....but until I can find a cause....SOMETHING to treat, it's all I have. Treat the pain and believe that you're not going to die today.
I've seen:
- GP
- Cardiologist
- Psychologist
- Endocrinologist
- Otolaryngologists (I had some vertigo when this all started....thought it may be inner ear)
- Gastroenterologist
- Neurologist
I'm probably forgetting a doctor in there somewhere.
Due to see:
- Motility Specialist (apparently I have dysphagia but, alas, it is not the cause of the pain...just a lovely little finding.....though I'm wondering if it's correct)
- Pain management specialist
- muscle and joint specialist of some sort
Sorry I'm not more clear on those....at this point I feel like people kind of talk through me....like they are talking to me but I've lost the ability to even figure out what rabbit hole I'm stuck in anymore.
Tests:
- TWO sets of MRI's done on my neck, spine, head and chest
- Esophagoscopy
- Manometry (never want to do that again...NEVER ugh)
- Chest and Neck X-Rays
- Blood work
- Full Metabolic Panel
Also probably forgetting something...hey, I'll let you know when the medical bills show up. It's like receipts or memos really....bills.
And after all this.....nothing.
I still hurt every day. The kind of pain that changes your personality because you would love nothing more than to sleep through every painful moment but you can't because you have a life that you desperately want to live...that you don't want to waste like this. Kids and a husband who need you. And that makes you sad, and angry and anxious.
So comes the insomnia (which I think is ironic)
And I'm so tired.
To still be chasing rabbits and feeling like I'm running out of time....or that there is no correct rabbit hole....I'll just be stuck underground...suffocated forever.
So I've been trying to find other things to do. Because I need a creative outlet and cookies and baking are my thing ya know....and I'm going nuts. So I've taken up a long forgotten hobby of mine: knitting. I really love it and I love yarns and fibers (so I guess I do have a connection to my mom's passion in a way). The cookies just take so much time and energy...I needed a hobby where the supplies were ready to go. No days of mixing and rolling and baking and coloring and wrapping and.............. it's just to much sometimes.
Sometimes I have a pretty good day and I WANT to do things. But then I wonder how long that good day is going to stay good...is it worth starting a cookie project? Will I finish it?
I'm still going to make cookies. I'm still going to blog. I can't just give up and lay here and disappear. Let life pass me by. I have to keep my mind active....it's just how I am. Even now, no matter how sick I feel or how tired I feel....I'm my own worst enemy because I have to be doing something. But usually with 2 kids and a house to clean that's not a serious problem.
Really, I will find the time to make cookies....soon I hope, because I miss it. And I will just keep blogging. Probably work on my beauty blog...Probably start a knitting blog....and I'll link them up here at some point...so when I do have a good moment throughout the day, I'll at least have SOMETHING to work on. And I know you're here for cookies so I don't expect anyone who follows the bake shop to follow the other ones...not everyone is interested in baking AND makeup AND knitting....I am...so I'll blog about it. This will still be my main hub tho. If I write about my life, I'll try to refrain from doing it till Fridays. Friday I take my blog back and it's my own guilty pleasure once more...and I'll keep you updated on my life if your interested in hearing about it.....otherwise just skip a Friday post.
So that's what's up with me. It isn't personal if I haven't returned a tweet or a like or something...I honestly just kind of forget sometimes....it's all a blur. Sorry.
But if you still follow me, and if you still read....and if you're even taking to time to read this now, I want to say thank you for staying with me.
I'll be right back.
Posts
65 comments:
Wow Ali. I am so sorry to hear this. I am sorry you are going through this. I wish you get the answers you need and hope you can alleviate the pain. My thoughts are with you!!!
I will be keeping you in my Prayers and for your Family as well.
Dear Jesus put your healing hangs over Ali and help the Doctors find out what is wrong with her so she can get back to her family and baking the way she wants to.
In these things I ask Amen.
Oh my goodness! I pray you find what's going on and feel better!!
A fellow employee was out of work for almost a year and they couldn't find anything wrong...she had vertigo too....she is back to work now...she found out she had to cut out carbs....but she fine now.....llike you want to hear this...i will see if i can get more specifics. She was so frustrated too but so happy to find out what makes her feel better.
I know you've tried everything, but have you considered that maybe you have a gluten sensitivity. It manifests itself in strange ways. Terri B mentioned her colleague cut out carbs.... it could really be a gluten issue. It may be worth a try. I hope whatever it is that's ailing you gets better soon!
I reread fellow workers Facebook and she is severely hypoglycemic...she had a 5 hour glucose test. These tests usually are from 1-3 hours.
So sorry you are going through this Ali and pray you find an answer soon. Thinking of you across the miles!
Ali, I hope you can find the cause of this pain ASAP. Use all your strength to live, day by day, until this pain go away. We will be here waiting to see your beautiful cookies when you are ready to show them to us again.
Oh, Ali, I'm so sorry you are going through all of this! And I can't think of a single thing to say or do that will help except that I'm praying for you. Peace, Comfort, Calm, and Health. (And some energy for living with those kids!) Be well.
So sorry to hear you are in so much pain. I pray your doctors find out what's wrong and are able to help you recover very soon.
I wish you a diagnosis finally and some relief from the constant pain, I can't imagine how difficult things are.
Just do what works for you, I'm happy to wait. I also love knitting and make up so bring on more blogs :)
Oh, Ali -I'm so very sorry you are facing such an awful challenge! Chronic, unexplained pain must just be the worst. Please know that you are in my thoughts and prayers, and I'll be right here (thinking about you) whenever you find the energy to check back in. Xxoo
So sorry to hear about the pain Ali.
I hope you'll find the answers soon and will be able to fight this. Wishing you all the best.
So sorry to hear what you have been going through!!! I pray that a diagnosis is in your near future!! I imagine, and hope that you have been tested for MS. You will be in our hearts and prayers!! And I am certain you will still have quite a following...all week, and I doubt anyone will skip Fridays!! We love your work, and pray that you will be able to get back to it soon, but in the mean time...take care of yourself!!! And when you get that make-up beauty blog up, let me know .... I would love to share what I am doing in that respect!!! You might be quite interested... May help you out financially as well!!! Be well, keep the faith, and know that everyone here is praying for you!!! All My Best!!!
Eileen Keenan, RN
Ali, I'm so sorry to hear that you aren't feeling well. I will keep you in my prayers. I will be reading when you post and will wait patiently until you are able to make and share your beautiful cookies. Take care!
I'm so sorry to hear you are such distress. I can only imagine your pain and the anxiety of not knowing. My heart goes out to you.
Have you tried acupuncture for pain management? I know it's sort of weird. I have never tried it, but I hear it works miracles and wouldn't hesitate if I were in your shoes.
I will keep you in my thoughts and prayers. Wishing for a diagnosis soon.
Sending love and hugs, sweet Ali.
Ali - thanks for sharing your heart with us and I'm praying that you find answers (and healing!) quickly. Hugs!
Amanda
Ali,
I'm so sorry! I will be praying for you and for answers. You cookies are some of the most beautiful I have ever seen and they are totally worth the wait! I hope you're back to full health soon and blowing our minds with your amazing designs!!
Anne
Thank you for sharing with us! Now we can pray for you and there's no better medicine than that. Hope you recover your health as soon as possible.
Ali, I'm so sorry to hear that you're going through this. Just focus on getting better and don't worry about us!
Cardiomyopathy ask your doctor about this. My mother had the same symptoms you did.
Have you seen a Rheumatologist? Sometimes they can be very good at diagnosis,even if the problem is not in their realm of medicine. Hope you have some relief and some answers soon......:(
I am so sorry you have been in so much pain. I hope you find answers soon. I will be thinking of you!
Word. I'm not going anywhere!
Thank you for sharing your story.. I will pray they find a cause and solution soon for you! I love your blog and your cookies. Take care!
Thinking of you and hope you'll be feeling better soon!
I wish they would stop screwing with our food. I think it contributes to many problems.
Ali, so sorry to hear of your health problems. I'm praying they find a cause and cure for it very, very soon. I miss looking at your beautiful cookies, but I know they'll be back for viewing when you are feeling better, and your health is more important right now. With 2 small ones to look after and your health problems, you have enough to worry about. Appreciate the update to let us know why you haven't been around, but take care of yourself first and foremost, worry about us later, much later. Take care and remember you have lots of people who are hoping you'll be your old self again soon. God bless you and your family.
Dear Ali, so sorry to hear that! I am no doctor and have no idea what may be wrong but I will tell you one thing. I had been feeling quite horrible for months (maybe over a year now), tiredndess, headaches, drowsiness, weakness altogether. Anyway, I thought it was the age (I'm 42) but recently I've been reading a lot about sugar and decided to go on a sugar detox. I can tell you that by day 4 my health and strength had completely changed. I'm only taking sugar in fruits and I'm trying to do it for 45 days, hoping to feel better and kill my old sugar consumption habits. Lately I've read more than one post from other baking bloggers sharing experiences like mine, do you think sugar might have to do with your health situation? Whatever it is, I hope you feel a lot better soon and I'm sure it's something that will go away really soon! All the best and keep your spirts up, bringing up children is very difficult when you're not feeling 100%, cheer up and thanks for sharing with us!
Your symptoms sound exactly like my niece who was diagnosed with gluten sensitivity. After an emergency hospital stay and many MANY tests, they figured it out. She read the Wheat Belly book and has adopted a gluten free diet. Her son is Autistic and he's on it as well. She said after 1 week, he's lost 5 pounds. She is feeling much better, and is looking forward to what the next few weeks have to offer. I am not a doc/nurse or anything close to it, but I also read the book and it makes total sense. So.. we are now gluten free. Amazing how much better we feel and we don't even have any issues. Check with your doctors, if they have not tested you, maybe they can. Take care and I'll be praying for a quick diagnosis.
I'm sending prayers in hopes you find the cause and can reclaim your life. We miss your posts but will wait patiently until you return to making beautiful cookies. God bless you!
Ali,
Not sure if this was mentioned above(I didn't have time to read all of the comments)but...
Did you blood tests include allergy testing?
I was having serious muscle and joint pain, vertigo, foggy brain, weird random pain, and migraines. I found out I was 'sensitive' to wheat. Now, I didn't have the typical gastric issues like most gluten-intolerances so no one thought to test. I cut out ALL GLUTEN, and most beans/legumes (basically paleo diet) and my pain is GONE. This was HARD...I too love to bake, and actually own a bakery. But, at the end of the day, living without the pain is worth the trade-off. I closed my baking business because I just needed a new life where food/gluten was not the center of it. Oh, but I do still do cookies for loved-ones. ASK YOUR DR. Feel better soon!
Ali I will be sending thoughts and prayers your way. I thought something had to be going on since you stopped posting. I pray you and your family find the place of health and happiness again soon! Sometimes just the stress of losing a parent is enough to send your body reeling. I wish you well!
So sorry to here you are feeling so bad. Have you had you thyroid checked? You would be surprised how bad it can make you feel. Hope you get some answers soon. I know how bad it sucks when you feel so bad and no one can help you. You just want to feel good just one day. That's sometimes all you ask for is just one day. I will keep you in prayers that you find some answers and soon.
So sorry you are going through this and I will pray for your release from pain. I am not sure but the unexplained pain might be Fibromyalgia, have you been checked for that. A couple of my friends suffer from this and it's not nice. God Bless
Ali, you may not believe this, but I've been thinking about you and wondering where you were. You have been missed!
You're doing an amazing job coping with everything. You don't think so, but I'm sure it's true.
A diagnosis and fix are on the way soon. Thanks for sharing and please keep us posted.
No worries! You need to take care of your self first, don't worry about us. There are dozens of your recipes I haven't got to yet so in the mean time I'll be experimenting with those! I truly hope you can find a diagnosis, thanks for all of your talent!
Ali so sorry to hear that you are having health problems...I hope and pray that they find the cause of your distress soon...but I just wanted to add, do you drink soda, either regular or sugar-free? and artificial sweeteners...all so bad for you...feel better
Please email me. I have some thoughts that might help. Your health goose chase sounds very familiar! I've been though it several times. It's a sometimes long and lonely road but you will return to being somebody you know again.
Ali, I am so sorry to hear about your pain, especially with no resolution! I know it can be so frustrating! I was feeling similar pains, though not as severe and after 8 months, with persistence, the doctor finally diagnosed Graves disease (dysfunctional thyroid/hyperactive)! I was happy to know that I was not going crazy. I hope that your questions are resolved soon, and you can be relieved of your chronic pain. Hang in there. I would love to see your knitting projects!
Oh Alison, I'm so sorry you have been in such pain for so long. Will keep you in my daily prayers and hope that a cure is found soon because we miss you and your beautiful creations.
Love, Jeannette xoxo
I'm so sorry, sweet Ali. :( I'm praying for you and cheering you on to wellness. With lots of love and hugs! ♥♥♥
My prayers are with you that you will soon figure out what the problem is and a cure for whatever it is! God works miracles!!
Ali oh sweet Ali: I am so sorry you are not feeling yourself and down right awful. Don't give up on finding what wrong. One of those Drs will care enough to hear you and follow thru with you. I waited almost two years w/ a lot of Drs and unanswered questions myself. Then found a Dr. who truly believed what I had was real and not made up. Started treating symptomatically and eventually got to the bottom of it. You have two kids, tiring enough sweetie, don't be so hard on yourself. take a rest when they do. IF at 5 your daughter doesn't arrange for her to have a play date or a neighbor take her for an hour or so when the baby sleeps. Don't give up or be hard on yourself. Be good to yourself right now and know that your not alone. I wish you better days and an answer to what's going on. Keep looking for an answer and don't blame yourself because your body isn't cooperating. Rest when you can. Blessings and a big hug!
Ali , so sorry to hear you are ill. I am praying for a resolution for you. Take care of yourself fist. xoxo, Lorna
I'm so sorry. I've been thru similar things. Please look into treatment for depression-not because you're crazy- but because of a chemical imbalance. What may be causing this is not enough thyroid hormone called reverse T3. Drs will check only TSH. That's not adequate for true results. Try genetic testing for MTHFR gene mutation. It's a newer field but if you've tried everything else what do you have to lose. I have a doctor in Fort Worth who, I believe, will not rest until she figured out what was wrong, hang in there and many Blessings.
Sweetie,
When all those doctors can't figure it out, you might try to find someone who has experience with autoimmune disorders. They are REALLY difficult to diagnose and the symptoms can vary tremendously from one person to the next. Good luck and I will pray for you. I don't pop over to your site very often so I feel that God is calling me to pray for you.
Ali,
I'm so sorry to her that you're suffering through so much pain. The physical pain and the psychological/emotional damage it can cause can be debilitating. I'm sure it's incredibly difficult, but please keep your hope and optimism alive. I will keep you in my prayers.
I'm so glad you found another creative outlet in knitting. I love baking/cooking and knitting. Knitting is so relaxing, and I can't wait to see what you create!
Hang in there! You can do anything you put your mind to. You will figure this out.
Wishing you all the best.
Have you seen a nutritionist . After having a baby our body's change . Celiac disease is an intolerence to wheat, barely . Gluten . It is a disease that so often miss diagnost. I'm sure your thinking that's not possible, I have eaten these things all my life. That was the case of a farmer I know who grew and milled her grain made all her breads she sold daily. Until she was diagnost with celiac disease. It was slowly killing her. Today all symptoms are gone. She feels and looks amazing. Some thing to concider. Wish you well
Ali, I agree with the comments on gluten free and autoimmune possibilities. You may want to consider a yeast free diet. Yeast can become systemic throughout your whole body, especially in women. This diet starves all the yeast that can make you very sick. It is a very hard diet to keep by taking out all sugars, breads, fruits and fermented foods for eight weeks. You don't feel too starved though, as you can eat foods like pasta, tacos and hotdogs. After a few weeks, you can add back some bread and cookies, but always keep them in moderation thereafter. There are good yeast free sites on line. This diet changed my life and completely healed many health problems that had plagued me for years. Love your blog. Keep you in my prayers.
M. Lawrence
Hey, I see you have got loads of comments already. famous you are..... :-)
Anyway, I just stopped by to see some pics of ur cookies and read this. I was ill a while back. Infact used to be ill all the time. I used to feel like being trapped in the bottom of an ocean and was so desperate to come on the surface (to get healthy). Thats when I tried tapping. EFT really works miraculously. If you have tried all, and still want to get better, I suggest you try EFT as well. Its a very quick and practical way that can heal you. You can google EFT and find out. There is a very good healer here in India who also practices abroad. His website is www.tappingchanges.com Hope this helped. I never write on public forums or blogs but thought of letting you know.
I really wish I lived closer so I could help with the daily things that take so much energy. I hope they find the cause of the pain soon. Love you and praying for you!
Ali, I love your site, and am so sorry to hear you are feeling sick. I can very much relate to knowing that somethings wrong,but not finding a cure. I spent 8 years with terrible debilitating headaches, amongst many other side effects, and so I can relate to having the professionals minimize the pain- and write prescriptions for Prozac- and I fully believed them. When I finally got my diagnosis of a brain tumor, I felt relief. Remember that YOU know your body the best, and that your self care is so important!
I'm so sorry to hear this. You are in my thoughts and prayers. This is probably going to sound crazy and out in left field but my step mother had been feeling the same way. She saw tons of specialists as well. She knew she had gotten bitten by a tick but all the docs said no way she could have lyme disease. After traveling far and wide to see numerous docs she went to see one that specializes in just lyme disease. They sound a lot like your symptoms. I'm no doctor and not sure if they have even ruled this out for you. But you should look into it. Here are some of the symptoms http://www.webmd.com/rheumatoid-arthritis/arthritis-lyme-disease
Meanwhile I will be saying many prayers for you. (((HUGS)))
It sounds like you have lots of ideas here to pursue. Hopefully that is helpful to you. Hang in there. I will be praying that you get some answers soon.
Ali,
This very well could be related to what you are eating or from your physical environment. Has that changed at all? You may have an intolerance to food(s) or a chemical. Thyroid tests and lyme tests are notoriously inaccurate. I would suggest you keep checking with your regular doctors and do not be afraid to get a second opinion if you don't think that they are taking you seriously. There is an 80/20 rule in all of life... 20% great and everyone else falls somewhere else along the bell curve. If you have any friends or relatives who are in the medical field ask for recommendations. But in the meantime, seek out a nutritionist. Again, ask for referrals from everyone you know--- ask some people at yoga or pilates studios or gyms if they have nutritionist suggestions, as people who exercise often seek these people out. You can make phone calls don't exhaust yourself going out. If you hear a name repeated again and again consider them. You also might see if there is a support group for gluten intolerance and see if anyone there has had good results from seeing a nutritionist. They can test your vitamin and mineral levels, and put you on a diet (I am blanking out on what they call this diet) where you cut out potential problem foods and then add them back in over time....especially sugar, dairy and glutenous items I would suggest you try to eat mostly vegetables and organic if you can...genetically modified products are not natural and the dirt on how bad they are for you is only starting to be considered by the medical industry. Stay away from ALL Sweeteners, fake or not until you get through the diet. If you do this while you research everything else with the doctors, I think you will find out what is wrong.
The suggestions about MS, brain tumor, thyroid, lyme, autoimmune, allergy in addition to the aforementioned foods are all good ones. And no one is better than another.
I know how frustrating and exhausting this can be. If you have a friend or sibling or cousin who can go with you to the doctors, especially one with medical knowledge, ask them to come along, it is good to have 4 ears listening. Let them take notes. Or have them babysit and take your husband.
I will read whatever you post. If you are in CT, I would be happy to help you or at least help you by phone.I am going to sign up for your blog to be sent to my email with my first name in it...feel free to contact me if you need anything.
Sherri
Hope you feel better soon. Miss you and all your designs. Take care and know we all are praying for your wellness.
I've missed your posts, and am now so sorry to hear you are suffering. I will say prayers for you and your family.
Wishing you peace and good health, Ali.
So sorry to hear about your troubles. Have you asked the Dr. if it could be fibromyalgia? It's worth a shot.
Ali,
First, I want to say that I love your beautiful cookie designs and appreciate all of the information you've shared, as I am just starting out on my cookie journey its super helpful. Next, I want to say that I am so sorry you are experiencing such pain. I have a 15 month old son and I too have had chronic, unexplained pain. I haven't been through the barrage of tests that you have though. My doctor came up the the fibromyalgia diagnoses for me and I have tried various lifestyle changes in an effort to get relief. There is a 11 year age difference between my children so when I couldn't seem to recover from my sons birth (2nd C-section) I attributed it to the fact that I was much older (37) and with time I would bounce back. Six months later I was still struggling and began to really wonder what was going on with me. I had chronic fatigue and despite having worked a very physical job in the past and belonging to a gym I could barely get around. I thought I was in a vicious cycle of pain and inactivity and that if I could just force myself to be more physical, i.e. working out at the gym, then I in turn would have more energy and less pain and would be physically tired so I could actually get some solid hours of sleep. What actually happened was that going to the gym and Walking on the treadmill resulted in pain so great that I felt like my pelvis and hip sockets were broken and I could barely walk for days. I would lay in bed and every bone in my body would just ache intensely. Sometimes my arms would feel like they had been ripped off. Its hard to describe how badly I hurt all over and hard to describe that the pain felt like it was coming from inside my bones. I was tested for RA, which does run in my family, but had inconclusive results. The advice my doctor gave me was that my pain receptors were in overdrive and that no activity was just as bad as too much in aggravating the pain. I haven't gotten on any medication except over the counter pain relief and a prescribed sleep aid. When I can get a several hours of uninterrupted sleep I feel like I have less extreme pain. The only physical activity I engage in now is light yoga. I'm going to try swimming over the next couple of months and see how that affects me. I also eat a low carb type diet. The only time I had total relief was taking a methy prednisone pack (not something you'd want to take very often) so I'm not sure if the intake of sugars aggravates the inflammation I have. Sadly, months later I took another prednisone pack and didn't have the relief I had first experienced. At least now, 15 months after having my beautiful little boy I can function fairly normally, although I am no where near the active person I once was. It sucks so bad to live in chronic pain. I hope you have a strong support system to help you through. I am sorry you are going through this and I will pray for you to find relief.
just checking in on you and wishing you improved health and much happiness.
Sherri
You are in my thoughts and prayers sweet lady.<3
Jacinda
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