I'm sorry I'm not posting much these days. Life has thrown us more than our share of curve balls and I'm too busy batting at them to blog much. I wish I knew why some of us seem to get the lion's share of challenges. I wish I could better face them with grace and courage. I'm hanging in there, but I really feel ill-equipped.
My daughter had a migraine-induced stroke about 6 weeks ago. That alone would send any parent into a tail-spin. We have a great neurologist so I feel "taken care of" in that respect, but dealing with the side effects of her meds is tough. She has been diagnosed with something called Familial Hemiplegic Migraine disease. I'm still in the learning phase so there's not much I can tell you about it that you can't just find yourself via google.
I'm in the process of seeing too many doctors to mention as they try to figure out what is causing all my troublesome health issues. I know what it is, but you know it sometimes takes lots of testing for the doctors themselves to believe you. My primary care doctor thinks they are all separate health issues caused by everything from sleep apnea to peri-menopause, but I know in my heart they are all simply symptoms of my worsening auto immune disease. What else accounts for it? If you are a "medical detective" and want to weigh in on what you think, feel free. I'll take all the input I can get as I try to figure this all out. I know this list may sound incredible, but I promise you this is exactly what I am experiencing day to day, and trying, trying so hard to live with:
Symptoms
1. Chronic and extreme exhaustion (daily)
2. reactive arthritis ( daily with varying degrees of pain.) It tends to be in my lower spine and right hip mostly, but can flare up in my neck and legs from time to time.
3. low-grade fever ( my pc tells me this is normal..huh?? Is it normal to have your temp 99.9 for weeks at a time, and then drop to 97.2 for a day and then up again?)
4. Worsening food allergies. ( Now life threatening allergy to all soy, and new allergy to wheat, rye, barley and oats)
5. mouth sores and swollen gums every few days. ( makes it impossible to eat.)
6. chronic joint pain and swelling.
7. chronic diarrhea ( EVERY day. not kidding.)
8. Strange rashes that come and go. ( ended up in the ER with shingles 2 weeks ago, too)
9. tops of fingers turning blue even when not cold (daily)
10. Nightly leg cramps/ charlie horses that wake me up.
11. trouble swallowing. ( Sometimes I cannot make myself swallow...very weird sensation.)
12. Hives on and off.
13. break-thru menstrual bleeding...but heavy, heavy blood loss. And I've been on trynoranil for years for PCOS. NEVER had this bleeding.)
14. daily nosebleeds that come out of nowhere.
15. shortness of breath with little exertion.
The worst is the fatigue. I have never experienced anything like it. Ever. It reminds me of when I had mono in high school. you know that level of exhaustion? Where you can manage an hour or two of being up, and then you have to sleep? That's what it's like. My PC would tell you it's sleep apnea or depression, but I know my own body. I am not depressed, in fact I am the opposite. I'm rageful over all of this. I want to be working more and doing more, and mu body won't let me! And I'm sorry, but sleep apnea could never cause this level of exhaustion. It is completely debilitating.
So, over the next few weeks I will endure a sleep study, a colonoscopy, and more bloodwork as my PC tries to prove her point. I finally called an immunologist myself and made an appointment for later this month. What else would account for all these symptoms and their sudden onset?
Well, I have to head back to work now. ( I'm on break.) Please let me know what you think, and if you are the praying kind, I'd be so grateful for your prayers. I hate to say it, but I'm losing faith in prayer after months and months of praying with no relief. I feel like I am in over my head. Where is God in all of this? He is silent, and I am scared.
Good to see you back! I've missed you and wondered many times how you were doing. I'm sad to hear that things are not going well for you, though. :-(
ReplyDeleteAs for your medical stuff, it's time for a new PC who will listen to you rather than poke and prod you just to prove their point. I think you're spot on. These are all auto-immune symptoms. You might try a rheumatologist as well, although they can get pretty darn cocky.
Where is God in all of this? He's carrying you. He's the "one set of footprints in the sand." He hasn't left you and nor has he forgotten you. But, if your prayers are for him to take this burden from you and ease the suffering because it is too hard to bear, perhaps His answer is no. Perhaps he has a larger purpose in all of it. I don't know what that purpose might be because I'm not Him...but He knows. Though He certainly has the power to remove the suffering, sometimes he allows it so we can learn from it, so our faith can be tried, so our hearts can be changed and knit with his.
I've been in a place of having only two choices left...faith or failure. I chose faith, even when it seemed like such a long shot and defied logic. In the end, I'm so grateful I did. The journey has not been easy, and nor has the weight of it been lifted (at least not immediately.) But I have learned much over it's course and have no doubt that God has used it as a means of polishing my rough edges! As the title of my blog implies "The flames shall not hurt thee, I only design thy dross to consume and thy gold to refine."
It's also ok to test Him in his silence as well. Ask Him if he's really there. Ask him why he hasn't removed the suffering. Ask him for peace and understanding. Ask him what you're supposed to be learing from all this. Ask him to change your heart and take away the fear. I assure you He will answer. You might not like his answer, but He will answer in unmistakable ways.
It also seems to me that you're trying to fight this and beat it. That's not a bad thing, belive me. However, having one of those lovely autoimmune things myself, I've learned that the harder you try to fight it, the more intense it becomes. They are agrivated by stress and unfortunately, there's only one way to win the battle with these wacky auto-immune things. As one who's BTDT, the more you can accept it, make friends with it, and learn to live with it, the more it will go away...kind of like RAD :-)
There's a grieving process that comes with it as you realize that your life HAS changed drastically. Allow yourself to go through that process. Ask God to help you through it. It's the only way you'll be able to find acceptance in it. It's hard, it bites, and it can make you feel at times like you're losing your mind. Just remember that all these feelings are normal, they are part of the process, they are just feelings (they don't define you), and they don't last forever. The darkness won't last forever either.
(((HUGS))) and yup, I'm praying for you, too. :-)
oh keri.....I had hoped things were going better..so sorry about everything! I can't speak as eloquently as Diana, but you are as ever in my prayers for healing and peace.
ReplyDeleteIn my thoughts and my heart and my prayers. Always.
ReplyDeleteI have *some* medical experience, just from having been chronically ill for...well, ever. I agree: Follow your gut, and find a new PC
have you considered seeing an osteopath physician? I also am considered borderline immune disorder - I found an osteo who is also a general med doctor and we combine the two medicines and life is manageable for me now. Chronic stress and chronic pain can lead to other hormonal imbalances and adrenal fatigue, I do not respond well to conventional therapies - synthetic medicines, but am now on cortisol manager, melatonin, 5 HTP, I-3-C that is now allowing me to sleep at night instead of crashing mid day into a coma. Find a doctor that will see the whole you not just the bits and pieces. My doc takes into consideration my mental as well as my physical and it seems to be working. wishing and praying for you to find that peace within.
ReplyDeleteIm so sorry that you are going through this. I dont know why some people seem to take the brunt of things...I will pray for you. I cant top what Dianna said about where God is...she is so right. I will pray for you. We are out here for you to talk to.
ReplyDeleteDear Keri,
ReplyDeleteThis is Rachel. I do not have an account and, therefore, must post as "anonymous."
Your friends who wrote comments before me spoke so eloquently, and I can, by no means, match the beautiful words and wisdom they have shared with you.
However, I'll throw my two cents in for whatever it is worth. Like Diana said above, I believe that God has a purpose that we don't always understand. The only purpose I can see in all your suffering right now is that God is trying to teach you to reach out and ask for help. You, Keri, are, by far, the most warm, compassionate, and giving person. It is time for someone to give to you. I have no answers to explain the suffering you are experiencing - as you so eloquently put it - why you get the lions share of challenges. I wish I could twitch my nose or wave a magic wand and make all of your pain and suffering go away. Sadly, I cannot, but I can offer you a few things, and I hope you will reach out and take them. I can sit with you in silence, we can sit and you can rant and vent (totally and completely understandable, allowed, and even encouraged). I am more than happy to accompany you to doctor's visits, sit in the waiting room with you, hold your hand through uncomfortable tests and procedures - my internship at the BIDMC is teaching me how to be a good medical advocate and ask doctors certain things. Overall, I want to relay to you that I am here for you in any capacity that I can be. I know that asking for help is really hard - whether it be emotional support or more tangible things like running to the grocery store or cleaning the house. Please don't be afraid to ask me, Keri. I WANT to be here for you!!! You have my number, and I hope you'll call with a list of things I can do for you soon. I am baby-sitting tonight, but if I'm lucky enough and the baby falls asleep, I'll be giving you a call. Sending many many many healing thoughts your way.
Love,
Rachel
Your symptoms sound like fibromyalgia.
ReplyDeleteHang in there! I hope you feel better soon... Your pain has a purpose <3 I have recently had similar symptoms, and my PC also said sleep apnea.. so frustrating!!! Finally I was said F)*#! the PC -- I think my immune system was down from all of the stress. If you haven't read Man's Search For Meaning by Viktor E. Frankl, then I think you should try it.. it's helped me a lot lately. I get very angry at my fatigue level too! It's not fair ... I'm a pretty healthy person, yet I don't get the perks of making healthy choices.. BUGGHA! My health is finally --after about 2 years of going down hill-- getting better.
ReplyDeleteI know I'm a little late to this party, but maybe check out this:
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