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Fighting to stay positive & needing to unload... Thanks for listening!

Sep 20, 2019 10:01 AM

It's been a rough year already and I'm hoping the remaining 3 months are a little nicer ๐Ÿ˜•. Oh how I wish I could rewind at least the last 10-15 years off my life! This has been an eye opening week in reality checks for me and my doctors.

After hurting my knee 2 weeks ago & waiting on the MRI (to see if I have a meniscus tear), I had to cancel the MRI and reschedule the doc appt. My insurance needs more info to approve the test...typical! I've done more sitting the past 4 months than the past 2 years. But everytime I try to be active and do something that takes most or all of my day, I end up with a swollen knee & returned hip & groin pain, along with shoulder pain and recurring headaches, not to mention the sleepless or pain-restless sleep at night. Yesterday I had an appt that required me to walk a long way from the parking area to the actual office location (& back), then to see my stepmom, and then errands. By the time I got home I'd been out 5 hours and was exhausted, not to mention moving as slow as a turtle ๐Ÿข. I couldn't help think "I really must look as feeble, old & weak to all these people as I feel," after someone held a door open for me, the third time I struggled to hold it and get through it on my walker.๐Ÿ˜ฉ. Needless to say my night was very pain filled and restless, again.

I'm really feeling more depression than normal of late, just the down & blue feelings. I'm becoming so dependent on others, even strangers, for so much help than I ever imagined. I lifted 30-40 lb boxes above my shoulders for 7 years before I quit work due to my health. I even helped my hubby lay floor tile, paint & remodel our house...nothing I couldn't do. And now I'm reduced to feeling as if I have nothing to contribute anywhere or to anyone at times. And what little I do ends up causing others to step in and help me. Just last weekend we went to a store and I got so tired I decided to go wait in the truck. I asked a total stranger if he could please lift my rollator into the back of my truck because I knew I couldn't, and he graciously did and I thanked him and asked God to bless him.๐Ÿ™ I find myself often thinking about the days when I was so much healthier, hiking in the woodlands & National parks๐Ÿž๏ธ, or walking along beaches๐Ÿ–๏ธ for hours or even all day, for days on end. I could sit and ride or drive a car on road trips for 3-10/14 days. No problem getting through the pain I had back then; a little pain meds, massage, heat, a warm shower or jacuzzi soak, then a good night's sleep and I could do it all again the next day. Oh those were the days I still dream of! Then I think about when I started getting sick in 2007-2008, which led to the horrible surgery & most likely all these debilitating chronic autoimmune (& other) health issues that have me disabled.

Wow! At just 58 I wonder how will I get through another 10-20 years if I live into my 70's or beyond, especially if I continue to worsen and deteriorate like I have the past 10+ years. I pray to God I don't have a long life if that's what I have to look forward to, but it's all in His hands how long I'll be around. I just have to keep trying, little by little, step by step, one at a time.

On Sunday my hubby and I were talking about my appt with the spine surgeon on Monday. And I could feel the anxiety and frustration while we discussed the newest issue dumped on my plate (CTD), and the possible outcome if I decided to go through with the surgery proposed (to repair 2 failed fusions, add rods to my T-spine, deal with facet issues, burn the nerves at C2 that's causing headaches, and fuse T1-4). Yeah that's a huge cut along my spine through muscles tendons and ligaments! No wonder I'm freaked out at the thought. I asked my hubby where would I end up if that surgery fusions not only failed but left me with increased pain. He stated I'd be in a lot worse shape, and I bluntly stated "I'd be pretty close to putting a gun to my head." NO, I wouldn't do that... EVER!!! But that's how I could see myself feeling, that life would no longer be worth living. So we decided that at this point in my life I will only do "Comfort Care" where my spine is concerned from here on. I saw the physician assistant and had a long detailed talk about the possible outcome, not letting her know our decision yet. She acknowledged that it was highly possible my proposed surgery could fail also & I'd end up with increased pain. That's when I told her the amount of stress & anxiety & depression I was feeling, in regards to that surgery, along with my hip & knee & finding out I have CTD. I told her my hubby and I had decided for Comfort Care only, unless a life threatening emergency arises that can't be helped. She completely understood and agreed that in light of the new CTD dx it's probably the best option, and explained symptoms to watch for that might indicate an "emergency" need for surgical re-evaluation & possible intervention. I was really worried they'd push me to get a second opinion, but she said because my hip isn't healed and now I may have knee issues, I'm under too much physical health stress anyway & it's no wonder I've become anxious & depressed. Ya think! ๐Ÿค”Her support gave me some relief, although it doesn't stop the worries that my unhealed cervical fusions may cause an emergency (the implanted bone has died so the only thing holding my spine together are screws & metal plates, which could come loose if my bone begins to deteriorate...DDD & OA). Yeah there's definitely concern & stress. But at least that surgery is off the table.

On the upside, my lung doctor says there is no change in my chest x-ray and my lungs are doing very good. She explained some symptoms to watch for due to my asthma doc reducing my inhaler strength, that may signal I need the higher side of med. I pray not! ๐Ÿ™ And on the downside my legs are swelling again, so I've had to start wearing the tight compression thigh high stockings again. Ugh! ๐ŸŒก๐Ÿ˜ฐ It's been so hot and humid here all year since March, but we are getting a short reprieve the last few days. My endocrinologist is running some labs on my parathyroid function and for anemia due to multiple new symptoms; itching, severe all over dryness, fatigue no matter my sleep quality or amount, etc. I'm waiting for the results.

As you can see my plate is full and I really need a break away from it all. Please know that I am always aware there are so many others out there who are dealing with much worse than me, and those who were born into life dealing with severe chronic health issues; while I'm thankful for the blessings I have, I also pray for others less fortunate than I am! As many of you know it's not easy to express these things, our pain & feelings, to those who can't possibly comprehend or understand. So anyway thanks for being here to listen! Hugs love & prayers that everyone has a good weekend!๐Ÿ™‚โค๐Ÿ™๐ŸŒผ

Sep 20, 2019 10:07 AM

PS: one of my doctors mentioned I need to find out if my Plaquenil that treats my Sjogrens could be responsible for the CTD. That would be just my luck! And then what will I take for my Sjogrens that we are pretty sure is attacking some of my joints? ๐Ÿ˜ฉ

Sep 20, 2019 4:17 PM

Oh FlappysLady! You have a lot on your plate. I'm glad you decided not to have another spine surgery. I'm praying you have less pain. I hope your knee isn't anything serious and heals right up. You deserve a break.

Sep 20, 2019 8:58 PM

FlappysLady...wow! Thatโ€™s about all I can say. Listening to all your physical problems, tells me your one strong woman. Iโ€™m glad that your not having surgery. I too had to come to the same conclusion that โ€œno more surgery unless emergency typeโ€ for me as well. Your 7 years younger then me. 7 years ago was my last surgery. Age 57! Brain implant . They told me I had end stage Parkinsonโ€™s disease and wouldnโ€™t live very long without it! Wrong!!! I too have undergone many surgeries and you know not one really was the answer to lessening my pain. Wow you mentioned plaquinil! Iโ€™ve been on it for years and Iโ€™ve been having a lot of ongoing pain to my hip and knee pain. I see my dr next month and Iโ€™m definitely going to bring it up with her. Downside is she said there wasnโ€™t much more I could take except steroids and we all know what damage that does to your body. Let us all know what the outcome from that is. With that decision made, maybe just maybe it will lessen your depression a bit. Winter is fast approaching and Iโ€™m terrified with what that is going to mean for me.
I know how you feel about being helpless. I see people around me enjoying life and being able to participate in it more. Iโ€™ve had to reflect on my life more times than I could tell you. The best you can do is try writing down in a journal everyday at least 1-2 things your thankful for. I know it can be pretty dang tough at times, but at the minimum โ€œlifeโ€. Iโ€™ve been there about the gun thing 1-2 times in my life. Never and would never do it but the thought was there. A sign I was overwhelmed. You have had a lot to deal with in your life. It amazes me how you can still have the time to respond to so many on this app. See you do reach others ( me included ๐Ÿ’•) I feel like your my mirror image twin. Lol we both in our own unique ways have been thru so much suffering and will continue to do so. Are you aware of the Serenity Prayer? I think of that every time I get to feeling so down and realize that Godโ€™s hands are loving and strong and can get me thru the toughest times if I turn to his strength instead of trying to do it myself. I have the utmost deepest respect for you and all the others on this app who struggle with this monster in their lives. Take care my friend ๐ŸŒธ and know your always in my thoughts and prayers ๐Ÿ™ ๐Ÿฆ‹๐Ÿค—๐Ÿ

Sep 20, 2019 9:02 PM

And to all my friends on this app that are struggling with pain tonight I offer up a prayer for us all๐ŸŒธ๐Ÿฆ‹๐Ÿค—๐Ÿ’•๐ŸŒป

Sep 21, 2019 9:38 PM

Thanks AnimalLover2. My knee seems to be holding up since I got all the swelling down. I'm relieved go have finally made the decision for no surgery. Now if I can just heal somewhat.

Painwarrior, thank you for helping me see that just by responding rho others here I do have a way rho help others. I guess my depression is just really at a low point and it makes it hard to remember the positive stuff. We do have a lot in common for sure! And I'm so glad you proved them wrong on the Parkinson's!! I hope my rheumy doc doesn't decide to stop the plaquenil because stopping it temporarily to have the hip surgery in May is what sent me into the flare in my hand joints that hasn't let up since; flare up, calm down, flare up, etc, all summer long. We took our granddaughter to a antique mall today & I overdid it. I'm in so much pain with swelling all over tonight. But she really enjoyed it and so did we until I hit the point of pain that couldn't be ignored. She lifted my walker into the truck and I didn't even ask her tmo. ๐Ÿฅฐ

I like uglier idea of journaling 2 things a day, so thanks for the suggestion! I dread the winter season too. I am familiar with the serenity prayer but it's been awhile since I read it; I'll look it up. It's ironic that my granddaughter asked me about blessings just yesterday, and we had a long talk. Her visit really has been uplifting to me at a much needed time. Sometimes it just gets overwhelming, and we've all been through that point many times. It's just harder to get through it the older I get.

Thanks to both of you for your support! His live & prayers we all have a good night!๐Ÿ™‚๐Ÿ’ž๐Ÿ™๐ŸŒป

Sep 22, 2019 5:40 AM

Hi guys your all in my prayers.
I am also struggling with things but slowly getting them out ...
I hope that you feel better soon to Flappy and all .hugsShore ๐Ÿฆ‹๐ŸŒˆ๐Ÿ™๐Ÿ™๐Ÿค—๐Ÿค”

Sep 22, 2019 8:47 AM

Thanks Shore. I'm praying for the issues you've been dealing with, I know you're going through a lot too. I think we are are right now. Hugs live & prayers floor a good upcoming week for all! ๐Ÿ™‚๐Ÿ’ž๐Ÿ™๐ŸŒป

Oct 03, 2019 8:04 PM

Hang in there FlappysLady. Just another day. Glad your a positive person. We all have those times when things seem and are so overwhelming.,โ€This to shall pass.โ€ Sometimes we only wish it would pass more quickly . Lol
Hoping your having a better day Shore. Itโ€™s raining here so you all know how my day has been. Take care and God Bless and watch over you both ( all). ๐ŸŒธ๐Ÿ˜˜๐Ÿค—๐Ÿฆ‹๐Ÿ‚

Oct 03, 2019 8:07 PM

Ps; FlappysLady, my husband and I both love to go antiquing! Its a lot of walking and I always pay for it later. But sometimes the pain is worth it. ๐Ÿฆ‹

Oct 06, 2019 7:06 AM

New user here..after reading some posts,just curious if anyone on here had tried CBD topical pain rub for some types of pain relief.. I have Fibromyalgia, symptomatic 15 years& diagnosed 9 yrs ago. My boyfriend has severe chronic back pain and arthritis. He's had surgeries, steroid injections and nerves burned to relief pain while I've tried everything under the sun for mine. I took him to a POW WOW on the rez which also had several vendors. My regular silver smith was there so i had him resize my ring, while waiting his wife noticed me constantly rubbing my shoulder and arms and overheard my boyfriend tell me he had to find a spot to sit down due to the nerve pain in his hip. She asked me to grab him so she could have us both try something. He was a little agitated he needed to get up as we had only been there a half hour and he was already hurting. She explained she also has Fibro, lupus, arthritis and a few other pain issues. She got out a container of unopened cream,put some on a cloth and asked us to put it on right away while keeping in mind what our pain scale was at that moment in the area we applied it. My shoulder was a strong 7. Burning tearing feeling was really distracting me from enjoying the day. My BF was still annoyed but he complied..She talked to us about the product and how it helped her for about 20 mins. We then reevaluated our pain where we applied the cream. I was in awe..My shoulder was down to an ignorable dull pain and further down my arms where i didn't even apply it didn't hurt at all. My BF looked at me in a way I've never seen. He didn't say anything before walking around their booth then he told her that he felt bad for feeling annoyed when she called him over..he had a dull pain but the intense nerve pain he had with every step was gone. Until this point he was pretty quiet. He ended up standing there another half hour asking questions about the product and sharing their pain battles. I'm saving up now to buy some for us..it's expensive and being in a lower income bracket and a single mom having 3 teenage boys i am very picky about what i spend money on..but the relief it gave in such a short time made all the other issues easier to deal with..not to mention the affect it had on my overall mood.

Oct 08, 2019 9:56 PM

Beej, sorry to hear that your suffering from so much pain. Great story and positive outcome. No Iโ€™ve never used CBD cream. Recently have really been considering it. My pain specialist said as long as it doesnโ€™t show up in my random urine test heโ€™s ok with it. With all the negative publicity on tv here recently, Iโ€™m a little hesitant until itโ€™s regulated and I can be sure Iโ€™m getting whatโ€™s publicized. I sure am glad that you had such good results. If I could ask, what did the lotion cost and how much did you actually get? Do they tell you the percentage of THC thatโ€™s in it? Just wondering. Thanks for the info. ๐ŸŒธ๐ŸŒฟ

Oct 11, 2019 8:53 PM

Hang in there FlappysLady, Iโ€™m praying ๐Ÿ™ for you and hoping youโ€™ll be ok. ๐ŸŒธ๐Ÿฆ‹๐Ÿ’•

Oct 14, 2019 3:20 PM

Thinking of you FlappysLady! Sending you gentle {{๐Ÿค—}} your way. Wishing you brighter and less pain filled days ๐ŸŒธ๐Ÿ‚๐Ÿ๐Ÿฆ‹๐Ÿ™๐Ÿค—๐Ÿฆ„

Oct 19, 2019 6:28 PM

To all those who are suffering in silence... I feel your pain and want you to know there will be better days. Letโ€™s just get through this one. Sending ๐Ÿ’•, {{๐Ÿค—}}, ๐Ÿ™,๐Ÿฆ‹

Oct 24, 2019 5:42 PM

Beej, welcome, & thank you floor sharing your story. Like Painwarrior, I am hoping for reputable suppliers and better yet, for my doctors to support use of it. Here where I live, it only takes 1 remark in your medical record to flag us as illegal drug abusers. I did buy a small jar of cbd ointment in an herb shop, and for the size it was expensive. I asked the clerk if it worked well and she said her customers keep coming back for more. I was "sorely" disappointed, no pun intended; literally felt no relief! As of now im using TigerBalm ointment; just dont get the red as it stains. ๐Ÿ˜‚

Oct 24, 2019 9:20 PM

Painwarrior, thank you so much for your little notes, and thanks to you all for your support & listeningโฃ I didnt intend to stay away so long, but things have been happening and I've spent the past several weeks at one doctor after another. I am doing much better all around, although I'm on an uphill battle physically. My hubby is scheduled for surgery Monday for a baseball sized hernia. I'm having a bone density test in 2 weeks & seeing an Emory Neurosurgeon (getting a 2nd opinion on my failed cervical fusions & possible minimally invasive options), at the request of several of my other doctors. They feel its too risky to leave the fusion areas nonhealed, but they also think the other stuff the original surgeon wants to do is overkill. Keeping my fingers crossed & praying there is a minimal treatment option available, as I'm already having symptoms of loss feeling in my hands. But my bone density scan may determine everything if it shows I have osteoporosis now.
Im starting some otc multiple collagen supplements to see if it will help my bones, cartilage, & my muscles, tendons, & ligaments; not to mention my hair, nails, & super dry skin (looking like wrinkled crepe paper lately). I'm coming to the realization that my hip may require me to use a walker permanently, because every time I use just my cane I end up unable to walk the next day. Hugs love & prayers everyone has a peaceful night (or day if you're across the seas) & as little pain as possible!๐Ÿ™‚๐Ÿ’žโค๐Ÿ™๐ŸŒท

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