Sunday, May 23, 2021

What's happening here...

Hello Friends, I thought I'd better get busy and share what's going on health-wise and to explain what I had to say at the end of my last post. I'll try to do this without being too tedious. I always hesitate to talk about health problems that I'm dealing with, but I feel like it's important to share things that might help someone else. 






Sorry this is a slightly long post; believe me it's been a long couple of years. I'm sharing a few of my fave vintage market and garden inspiration pics to make this a little more interesting...





If you remember last year in May, I had a cervical spine discectomy and fusion that went well and I had a pretty fast recovery time. The pandemic caused a two month delay which was brutal, but I survived. So this year it's my lower back that needs work. I have a vertebrae that has slipped forward with two herniated discs that is causing my sciatic nerve in my left leg to be crazy. (that same vertebrae has stress fractures on each side) I can't put weight on it easily, which means hobbling around the house and then my husband pushing me in a wheelchair when I have to leave the house.(mostly doctor appointments and tests) I have to say that's been a humbling experience. The back surgery will be early in June so I'm hoping that takes care of all the leg and hip pain and some other strange symptoms.






And since life is sometimes complicated, I've also had to de-tangle a load of autoimmune symptoms this last year. I've had a lot of neurological problems for the last eight years on top of my heart problems: loss of balance, numb/tingly hands and feet, facial pain and numbness, trouble breathing with burning neuropathy in my torso. (just to name a few) You may be wondering how these problems can be autoimmune illness but they can be. This is all on top of painful joints, vasculitis and the Sjogren's Syndrome "dry" symptoms that I've had for years. It's hard to describe what autoimmune illness is like, but sort of like having a low grade flu for weeks or months at at time. Then the rest of the time, you might feel almost normal, but unaware of what this "ninja" disease is doing to you on the inside. 







I knew nothing about autoimmune diseases until about 5 years ago when I was really sick and doctors weren't really interested in trying to figure it all out. I took my symptoms to "Google" and spent tons of time researching reputable websites like Mayo Clinic and Johns Hopkins University/Hospital. I learned a lot of information, but it started me on a long merry-go-round ride with very slow progress.







Fast forward to this last year and knowing I needed a new Rheumatologist, God miraculously got me in to see a very knowledgeable doctor here in town. This new doctor recognized that my symptoms were very weird in combination so he started testing me for some rare autoimmune illnesses. It's taken a bit of time but he sent me to an immunologist that is a step beyond a Rheumatologist, and ends up I have an odd duck illness known as some variation of Common Variable Immune Deficiency. This is a syndrome where you don't make antibodies to illnesses, such as viral infections, the flu, pneumonia, or autoimmune diseases, etc. Most people that have this have repeated sinus/lung related infections and illnesses etc. Thank the Lord I have not had that, but I do have other symptoms which are out of control attacks on my immune system, which includes attacks on nerve tissue. 







One treatment and an answer to some of this autoimmune problem is having intravenous infusions (IVIG) or subcutaneous infusions which I should be able to start a few weeks after my back surgery. These infusions will hopefully get me the antibodies I need to get my immune system back on track. But... Big but, right now I can't take the Covid vaccine because I won't make antibodies to the vaccine. (That's how we gain immunity) So I'm not sure if I'll be able to get Covid antibody infusions to help, or if I'll be the person still wearing a mask from now on... sigh. 





I'm going to take a blogging break just so I won't put pressure on myself... not sure how long I'll be taking it easy. I may be back in a week or so, it just depends on me being able to sit at the computer, but ultimately it's if I'm up to feeling the slightest bit creative. 

I'm sharing all this with you all because I just don't know exactly how things are going to go. I'm hopeful that I'll have a quick back recovery and that the immune problems can be remedied over time. I'd like to have my life back, and be a somewhat normal person. (ok, I could make a ton of jokes over that statement) I love blogging, so I may be back even before you miss me. That would be super, but I needed to let you all know.





I'll still be blogging and hosting the All About Home Link Party this next week. After that I'll "redirect" you all to Amber's blog. I'll be trying to keep up with everyone and stop by to say hello. I imagine I'll be giving short updates, so come back by. I'll wish you all a good Memorial Day ahead of time. I appreciate your good thoughts and prayers...


32 comments:

  1. I'm 80 and just diagnosed with a rare autoimmune disease and lupus. Spend over 5 years on doctors who were clueless. I have always been a "go" girl and the extreme fatique is really disheartening. But enough about me, prayers and good wishes for you and your doctors to get you feeling better!!

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    1. I hear you Sharon, the fatigue is so hard to deal with. Having to plan your day around being tired and taking a nap is such a bummer. I used to be able to do "anything" and was constantly busy. I hope you're getting the treatment and care that you need! thankyou for your prayers, take care, friend!

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  2. So sorry to hear about your infusions etc. Praying your back surgery goes well as does the infusions. But if you are the person to have to wear a mask, it will be okay! He's got this and YOU!

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    1. thankyou Cindy! I'm not looking forward to the infusions. Having to stick myself every week in the gut and then take 2-3 hours with an IV is sort of daunting. The hope that it will work is my motivation to do it. I DO have some really cute masks. I found one made out of Burberry plaid that is super cute! thankyou for your prayers, friend.

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  3. Autoimmune issues are so hard. My Terry has Sjogren's too. I know how much he suffers with that. Taking time for yourself right now to feel better is the best thing for you. We will all be here when you get back to blogging. Keeping you in prayer and good thoughts. Terry takes some good medications for his Sjogren's that help him. His fatigue is always there. That is the worse part. Take care sweet friend. xoxo Kris

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  4. You have an alphabet soup of issues. So happy that you found a doctor who can give you some answers. Please know that I pray for you and your healing.

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  5. Thank goodness that you are finally getting some good and hopeful answers to the nagging health issues. We’re all thinking of you and wishing you the best. You may have posted this info. before, yet do you have a P.O. Box address that you’d feel comfortable sharing with us so we can send some happy mail?

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  6. Debra,

    Take the time. Autoimmune diseases are tricky.

    I received my COVID vaccine 1 month before my infusion for MS. I have to go get blood work done to see if I gave antibodies.

    Autoimmune diseases are tough and can be lonely. I am praying very hard you get some peace.

    I feel horrible about this. I didn't think to ask. I noticed you were posting less and less.

    For not touching base I'm truly sorry.

    I hooe you'll check in. Blogging has been my salvation many times.

    Hugs and prayers

    Cindy

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  7. I'm praying for you, Debra. I'm so sorry you’re still dealing with these health issues. Keep us posted.

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  8. I am very sorry to hear your news... I am praying for you now... May God show Mercy and peace to you. And, may he nurture your body. Leticia

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  9. So sorry to hear about all the issues you are having. Thank goodness you found a Dr. That cares enough to try and find answers. There are some that just brush you off, like you don’t know your own body. My sister had that happen. Had cysts removed in her abdomen. Months later told her Dr. That she was having pain again. The Dr. Told her she was just bored because her husband was away a lot for work. Went to her associate and they discovered more cysts. Needless to say she changed Drs. Right away. Prayers for your surgery

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  10. Sending you lots of love and light. Remembering you in my prayers.
    Teresa

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  11. This post is so well-written, Debra. It will be a great help for anyone just trying to find a path in a similar situation. You & I both know it requires advocating for one's self or having a close someone who is willing to do that. I am thrilled once again that you're making headway with the right specialists who are willing to work with you and try to understand the complexity of your particular situation. I'll continue praying for you, certainly, and look forward to hearing from you after the surgery and through your IVIG. Btw, the pictures in this post are super. ♥

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  12. Debra, I am so sorry that you are having to go through all these health issues. I agree that it helps others who might be facing some of the same things. I think it is always good to talk over most things. I am having chronic back issues now but if I have a place to sit when it flares up that is helpful. Since I had my toes removed I have nerve damamge in my foot. It isn't constant but when it flares up it is not fun. Take care and it sounds like you have a good doc now so my thoughts are with you my friend..xxoJudy

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  13. Sending you positive thoughts from Australia - look forward to your blogging return when you are ready. :)

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  14. Prayers for peace, comfort and complete healing during this journey...glad you found a great Dr. and hope he can help you find relief to bring you back to do what you love to do..hugs...❤️

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  15. I am a bit behind, but know that I am glad you have a Doctor you like and I hope that he can fix things up for you. Sending lots of happy and loving thoughts your way.

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  16. Debra I remember the years when regular doctors, and even specialists couldn't seem to understand my autoimmune issue. It lifts my heart to hear you say that you've found a specialist who understand and has experience in figuring this out. Planning your days around the infusions and recovering from the surgery will be enough on your plate for now. Don't worry about your followers, we will patiently wait for you to feel good enough to blog again.
    Lots of prayers and sweet thoughts coming your way!

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  17. Sending Prayers for your healing. A family member has been going through similar health challenges, starting with finding a competent Dr. who cared enough to get to the bottom of symptoms and constant exhaustion/flu-like symptoms brought on by auto-immune deficiency. They have cerebral instability. I wish I could say that getting the proper diagnosis is easy, but it isn't. It's a blessing that you found a competent Dr, although I am certain it'a been and continues to be an uphill battle. Blessings to you and your family!

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  18. Oh, Debra, I'm so sorry to hear that you are having medical issues that are interfering with your quality of life. I pray your back surgery goes well and hoping your infusions will bring back your energy and health. May God be with you and keep you safe through all this. You will be in my daily prayers. We will miss you but hope to see you back very soon and feeling better.

    Many hugs,
    Tee xo

    ps...you have such beautiful pictures on this post! I'm glad you have so many to share. I just love your blog! Hugs! <3 <3

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  19. Debra, I so appreciate how open you are and sharing this journey with your health with us, not easy for sure, and sitting the length of time to put it all down. I can't tell you how much I love your sharing, educating us on what you are going through. I love how your husband is your greatest supporter! When I got ill, the doctors from work said it was all in my head and I like being a victim, totally not true. I was finally diagnose with Chronic Fatigue and Chemical sensitivity, that is so minor to what all you have had to go through, just discovering what it is and then find a treatment. We love you, praying for you, take all the time you need to get through this next treatment. Will love to hear how you are doing and support you to in words of encouragement and prayer dear sister in the Lord.

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  20. Debra, I'm so sorry to hear this. I know personally how challenging living with chronic illness can be and the added pain is all the worse. I send you wishes for healing and ease with your surgery and beyond. It sounds as though you have a very capable team and that makes a world of difference. You are also a fighter. That can be hard when the chips are down but it is perhaps the best possible thing you can do and you are up to the task.

    Thank you for sharing your personal story. It makes a difference to many of us. (And by the way, you won't be the only mask wearer. Even with my vaccine I will be wearing it if I'm in a crowded space. I may trust the vaccine. I don't trust the variants!)

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  21. Debra, I've always felt such a connection to you and consider you to be a dear friend. My thoughts and prayers continue to be with you in the days, weeks and even months ahead. God be with you.

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  22. Hi Debra, sorry to hear about what you are going through. I haven't seen you for years but you are such a fun, upbeat person. I think your strength is your faith and optimism. Can you possibly share the name of your doctor, as I am currently looking for someone to see for my fibromyalgia who won't tell me to get a hobby (yes, my doc said that). Take care

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    1. Hi There, I'm sorry but I don't have a way to reach out to you in an email for a reply to your comment. You can send me an email by clicking on the letter icon on the right side of my blog under "Lets be social". Be sure an leave your name. I know how hard it it to get a doctor to listen and try to figure things out. Thanks for leaving a note! Deb

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  23. Prayers for a speedy recovery. Health is number 1.

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  24. I'm so sorry, Debra. Physical challenges definitely drain the psychological, too. Prayers that your medical team will give you good care, and God will send the health graces your way!

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  25. Sending warm thoughts and prayers your way. I hope it all works out as quickly and simply as possible. I will miss your posts since I love your style & find you so inspirational {I mean- look at all these pictures} but the most important thing is that you take care of yourself. Wishing you the best Debra. XO- MaryJo

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  26. Debra, I'm so sorry to read about what you've been going through. Sending you healing thoughts!

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  27. Praying for you, Debra... I can't even begin to imagine how you are feeling. I'm so sorry! Don't you worry about the blog... it will always be here!

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  28. Oh Debra - I'm sorry to hear you're having health issues. I've dealt with sciatica pain too and it's no joke! Don't ever feel bad about taking time off from the blog - your health comes first! Sending hugs and healing vibes!!!

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