Hello, It’s Me. A Few Life Updates.

Okay, so I’m really struggling to get started on this Blog post this morning, although I can’t exactly put my finger on why…..any thoughts? Oliver is not helping my productivity, but he is stinking cute <3

It has been a long, but beautiful summer, I’m so sad to see it go. Autumn in New England is here, with the leaves turning, warm days and cold, frosty nights. I’m a little behind in my posts, so I just wanted to drop a quick hello and give everyone some life updates.

This summer has been tough and fraught with issues overshadowing the gorgeous weather. I woke up one morning, with my vision so blurry, it was difficult to see. I have never worn glasses and while I initially chocked it up to just being morning fuzziness, after over an hour, it began to get pretty scary. It wasn’t only up close, but also far away. After a few harried phone calls to Bri, he once again left work to take me to a couple of emergency Doctor visits. Long story short, the eye Doc said I needed glasses, but wasn’t real clear on how or why the issue presented itself so abruptly. After doing a Neuro screening with Primary Care, we half-heartedly accepted what vision said and got the $300 glasses. One month later and the same thing has happened one more time and lasted many hours once again. Of interesting note, aside from these episodes, I can see perfectly fine without those glasses. Chock up another inconclusive episode and more wasted money. Do you like them?

As we moved past this, we were getting super excited for vacation. We rented a house on the Maine coast for the entire family! So all six of us, plus our fuzzy loves. It was something the whole family was looking greatly forward to!! Until of course, it hits. Why does it always seem to do that? As we tried to pack and prepare for our week away, I initially ended up at the Doctor for what we thought was yet another UTI. So with antibiotics in hand, we continued our packing until I was hit with tremendous abdominal pain two days later. I was doubled over for hours and none of the meds I have were doing anything to alleviate the extreme pain. Of course, my Primary Care was on vacation-could I wait until tomorrow? We weighed out our options and then, I felt it. There was a lump in my abdomen. All things considered and after four hours of horrendous pain, we went to the emergency room. For the first time ever, they didn’t even triage me-we were immediately whisked into a room. (still wearing those glasses). In intense pain, that was all new and totally unfamiliar to me, my Husband and I really struggled to not allow our minds to wander where they kept wandering. Lumps are never, ever good.

After an emergency CTScan and several hours, I was diagnosed with Colitis and an ovarian cyst-the lump, he said, was my swollen colon. We were given some new meds and sent on our way with instructions to see my regular Doc in a couple days, but grateful to at least know what was wrong. Since we were going on vacation, we ensured we did that prior to going. The Friday before leaving, we had the absolute privilege of meeting the covering Doc in the office, who started out by asking me why I went to the ER, before quickly upending the ER diagnosis and saying it was impossible for me to have Colitis. Yay. I’m not sure which was better; his appalling bedside manner or upending the diagnosis. His take? It was only a cyst and somehow I had an incredibly rare tear in my muscle. So rare, he’d only ever seen it once before. I think I was more comfortable with supposedly feeling my swollen colon. We went on vacation and put my health aside for the week. Which was glorious!!!

Who else gets huge relief from their symptoms while at the ocean? Anyone? Aside from loving our family time, the absolute best thing about being at the ocean is that I get tremendous relief from my symptoms. Not one, but nearly all my symptoms improve. It is just the best thing! After asking other people with conditions similar to my own, it seems that this also happens to alot of other people……and yes, we are desperately trying to relocate to the coast. It’s pretty cost prohibitive. So eventually, we’ll move to Maine.

After a really awesome and glorious vacation, we came back home. No surprise that I was pretty much immediately couch bound for a week. While it’s always a bummer to come back from vacation, it’s really horrible to come home to feeling awful again. It’s so freeing to feel better.

After finally settling back in, I had my Botox shots for migraines. I had been super, super anxious about the 31 needles to my head and face. So much so, I actually had canceled twice before. I pretty much go to bed with a headache or the start of a migraine every night, so we knew it was time. The procedure was actually not that bad at all; far better than I feared. The Neurologist had described it as only feeling like a bee sting. Ahm, I hate bees and typically run from them in the totally girly fashion of screaming and waving my arms like a lunatic. But…..that really was how it felt. He moved so quickly with each shot that there was really no time to react. I didn’t really have any after affects from the shots, but the following day I was so tired I felt drunk. Since I have alot of issues with medication sensitivity, he did not do the maximum dose. One week on and I’ve had one headache and one migraine, which is certainly an improvement. The biggest tell was when I cried this week. Typically as soon as the tears start, I get a migraine. I had a good, ugly cry this week and no migraine!!! The Botox shots are repeated every three months, so next time I have them, I’m sure he will do the maximum dose. Of considerable note, my eyelids didn’t droop; which is one of the major side effects.

Are you still with me?

While all this has been going on, I had a follow up Mammogram, which of course, I got a call back on. It needs to be repeated. Having already had one biopsy, it’s hard to ignore the impending doom a questionable mammogram puts over your head.

Moving on, my one year re-evaluation of my brain lesion was yesterday. As I laid there in the MRI tube, last night, pervasive thoughts of my own vulnerability and fragility came. Any changes, the tech asked? Ahm, blurry vision and episodes of shaking, nausea and dizziness. Do those count as changes? The symptoms, episodes and tests seem never ending. I suppose I should be grateful, I laid there trying to reason with myself. But with each test, unknown episode or new symptom comes the fear that my life remains truly in the hands of the Doc reading the results or the machine scanning my body. Time and again, Doctor visit after Doctor visit, my Husband and I are faced with my fragility and the pending doom that could lie behind this latest episode or symptom. While thus far, we have been super lucky, it doesn’t change the innate fear while you go through it all. The emotional upheaval has been truly scarring.

As we move on into October and the turning of the leaves, I have a month fraught with appointments and follow up testing. Maybe the Cardiologist can get to the bottom of the shaking episodes, which have been ruled out as being Hypoglycemia.

With so much turmoil, of late, I have been struggling emotionally and have been dealing with an uptick in the levels of fatigue. Are they connected? I’m sure. I wish I could just ignore what’s happening and cancel all the upcoming appointments and tests. I wish I could say that the lump that can’t be properly diagnosed, the questionable mammogram, blurry vision and shaking episodes weren’t throwing me over the edge. I wish someone, just once, could conclusively determine the root causes of all that I live with. And yet, this is life. It’s messy, it’s scary, it’s vulnerable.

So forgive me and my loss of productivity as of late. As I struggle to move through countless appointments and tests, I am trying to keep up on my writing. I hope to do a better job and do have some great ideas for upcoming posts. Thank you for bearing with me and as always, for reading. As I tell you all about what’s been happening in my life, I know that you all live with much of the same. Know that I am thinking of you and sending you my strength and well wishes. The path we are all on is often terrifying and certainly trying. As I struggle, I try to still look for the Blessings in my life and to take pause for the beauty that exists despite those struggles. I wish you all the same.

In the midst of all the darkness, fear and struggles, the beauty of life still shines through.

Cause look what also happened on vacation:

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

31 thoughts on “Hello, It’s Me. A Few Life Updates.

  1. Thank you again for posting your struggles. It helps. I too get the shaking especially when fighting a severe migraine. I have found, myself, because of low appetite due to the pain and the fact I also a diabetic, my sugar drops. I try to eat something small. I am also going to discuss with my doctor. This is new for me and I don’t like it.
    I pray that you get the answers you are looking for. I hope you can make your move to your lovely beach area. Gentle hugs and love 💜🌺

    1. Thank you ❤️ We have checked my glucose levels and A1C and they’re normal, but I don’t know what else to attribute it to, if not a sugar issue…..thanks for mentioning it happens to you. I guess, for me, we’ll just add it to the abyss of symptoms that aren’t understood. I’m glad discussing my symptoms helps, I have found that sometimes it’s just nice to know you aren’t crazy or the only one experiencing such crazy health issues. Thanks so much for commenting!! Hoping you have a low pain/symptom day, love Stace

  2. Oh the most powerful things happen at the ocean’s edge….that salty air….the water that comprises so much of our body. Our mom’s grew us in a fluid world. Glad you had some time to let some of it go.
    Robin used to suffer terribly form chronic migraines…she’s better with diet restrictions, but they come back occasionally.
    Prayer for you Stacey.

    1. Quite poetic, Mark. Thanks for the reminder. The ocean really is just magical. Ten years, ten years to go, to live there. I’m glad Robin has found dietary restrictions to help. That’s great. Anything to lessen the powerful hold migraines have over your life. Hopefully the Botox squashes them. Thanks for commenting, I hope Robin has a good day today ❤️

  3. Stacey, I live next to the ocean, the Pacific Coast in Humboldt County, California (not SoCA!) and I feel so much worse at home. I went on a 5 day trip alone to help a friend pack for a move from Sacramento to Chico where her daughter lives, after her failed 37 year marriage (it’s just what you can imagine), and then onto Reno, NV where my middle daughter and her police officer husband had bought a brand new home! I could not believe how good I felt and managed to only take one Tyl #4 each day. I desperately want to move to a dry warm climate, probably around Reno, but can’t until my husband retires, not sure we can then since our home will be paid off and our property taxes are so low thanks to Proposition 13. The very first morning after I got home, sleeping on my beloved bed, adjustable memory foam from Sleep Science, my right shoulder was really bothering me. I couldn’t believe it! I felt good even sleeping on non memory foam beds in the dry heat. Very annoying!

    I don’t know how you do it! My sister started to write on her journey with chronic pain. She doesn’t have a real diagnosis yet, she’s been through so many. My diagnosis is fibro and chronic fatigue. Thank goodness I don’t have the fatigue. She has an appointment at Johns Hopkins in October to hopefully get some answers. She is so lucky to have great insurance and plenty of money for the trip! She’s way worse than I am. I’m still able to stop and sit on my heating pad and recline in my rocker/recliner and the pain disappears. If I sit around all day like this past week when I was fighting a cold, I barely have any pain. It’s so annoying!!!

    Praying for you and all those with chronic pain. My sister’s name is Karen Beals and she writes on a facebook page:

    If anyone is interested. She writes from a Christian perspective.

    1. Yeah, same here. My Husband, Bri works for Verizon and has 22 years in. At 30 years, he gets a full pension and benefits (thank God, thank you Verizon). Verizon isn’t near where we’re hoping to relocate, so we’re stuck inland. Interesting that you don’t feel well by the coast-thanks for the response. I have heard that warm, dry weather helps a lot-although I haven’t been to NV since before I got sick, so it would be hard to tell. Wow! That’s phenomenal that you can control your pain that way! That’s great. I’m envious. I’m so sorry to hear about your Sister, I hope she gets some help and answers from John Hopkins!! We’ve had a bad go round with diagnoses being made and then changed. It’s really mentally taxing to go through that. I’ll certainly be happy to check out her Facebook page!! Take care of yourself ❤️ Stace

  4. So sorry you’ve been struggling lately with such weird and scary symptoms. I have the same problem with my eyes and still don’t have an answer as to why and it’s sort of just become a fact of life. Some speculate it’s mast cell degranulation (and sometimes it is) and others think it’s the dysautonomia and how slow to change we become. I’m leaning toward the latter, as I’ve seen fewer of these problems since I started on a new supplement that’s improving some of my dysautonomia symptoms. Regardless, it’s frustrating and problematic and no fun to deal with. Neither is the mammogram and MRI jitters and I wish for all the best outcomes on them all. Thinking of you! Xx

    1. Michelle, I just found this article: http://www.fmauk.org/general-articles-highlights-208/266-does-fibromyalgia-affect-eyesight
      The Doctor attributes vision issues to just plain old Fibro…..?
      We’re getting no good answers here either. Eye Doc says I need glasses, except between these episodes I can see fine-so it doesn’t really fit with needing glasses to me….Neurologist is saying it could be migraines w Aura without pain. Although I don’t usually have Aura. Interesting, I hadn’t thought of it being my Dysautonomia. 🤔 I’ll have to ask the Cardiologist next week. May I ask what supplement is helping the Dysautonomia? Argh-I’m incapacitated by it lately……
      Thank you for the well wishes, I truly appreciate them ❤️

      1. Honestly, I think they’re talking about the same thing, but maybe not realizing dysautonomia is really the culprit for one thing and migraine the other? They’re distinctly different problems for me, resolved at completely different times using different strategies and never seemed to play off each other. Auras come in shapes, sometimes colors and start with warning flashes sometimes and can grow to white out your vision, but almost always grow from a pinpoint. They can also happen where they seem colorless and lightless, but there’s still an odd movement and the blurriness is in patches. With this other issue, I’ll be reading or looking at my phone and my eyesight gets stuck at that focal point. They just quit adjusting until they finally unlock and start focusing right again. If it’s the latter you’re experiencing, my bet is the supplement would’ve a great thing to try. My eyes were terribly dry and about a month into taking this supplement the flood gates opened up and they watered for days, like running down my face! It lasted a few weeks and I finally seem to have normal production and havent had my focus stuck since. The parasympathetic nervous system controls our tear ducts and dry eye is very common. What has helped me is bringing up my acetylcholine levels using a product called Parasym Plus. I reviewed it, but I’m not trying to sell you anything. I was on short term contract and my comission expired, anyway. Actually you may be able to get a free bottle to try if you agree to review it. They came to me and have been stellar to work with. It was created by Dr. Diana Driscoll, a former ME/CFS patient and she’s really pretty brilliant. I’d be happy to connect you with someone if you like. Maybe take a look at my review and let me know. I’m going to put a link in a separate comment, just in case it goes to spam.

      2. Ahhhh, yes. I remember reading this review!
        All of what you described is very different from what I experience. I’ve had migraines for years, but have never had Aura-although I guess they can morph. I had Basal migraines for a while there and many of these symptoms align with Basal migraines. So I may have just returned to that. I suppose.
        We’ve gone through a bunch of testing and still come up empty handed, so if the Cardiologist has an answer, great, if not, we just chock it up to the bottomless bucket of symptoms. I’m now getting Botox injections, anyhow.
        That is very, very kind and generous of you to offer to introduce me. Thank you so much!! I’ll certainly let you know if I decide to do that.

      3. No problem. I’m so glad I took the time to describe what I’ve experienced so you could compare and didn’t waste time on it. I kinda wish that were it, as the solution turned out to be so simple. The only other thing I can think of is an EDS problem where the tendons and ligaments become to loose to do their job anymore. The problems we can experience with eyesight seems endless. I really hope you find some workable answers. Good luck!

  5. Omg Stacey I had missed this post and just read it. I’m crying and smiling and shaking my head. I wish I could just hug you right now. Every single thing you mention I have experienced in one way or another. It’s just always something. First let me say I’m glad you got away and enjoyed your time with your family. Secondly I absolutely love being by the water. While I’m a New Yorker burn and raised I never wanted to live in New Jersey but followed my sister here and can deal with it only because of spending time down the shore. It’s where I’m happy at peace and feel alive. As the days are getting shorter and darker earlier I’m already fretting about the winter. As far as the eyesight, and all the unexpected things that come up with our health before a occasion or vacation I know it all to well. In fact on Labor Day I had booked an Airbnb to Cape May which we try to do each summer. I ended up having to cancel and pay 1/2 the stay as it was a week before and I was feeling horrible. Stacey Ive hated knowing that this is what many of us go through and for so long I felt so alone and different. I can’t tell you how relieved and at peace I feel to know I’m not crazy nor crazy or lazy.
    The things we experience are real as crazy as they sound they are real! Every time I experience something new I tell my husband that no one would believe the things we go through. Well I know for sure you’d believe it Stacey cause you go through the same.
    I pray that you are feeling better and I’m so happy and proud you were able to get away in the midst of all the uncertainty. I send you hugs 🤗 and know that all we can do is take one day at a time and that in the middle of it all we have to find time to enjoy life too.
    I know sometimes it’s hard as I struggle with it to but we must push to not let this Illness take us over.
    Love and prayers always 🙏🏻❤️🤗

    1. Oh gosh, Sandy, I totally get it. I’m so sorry for what you go through-what we all go through. After my recent ER trip, the covering Doctor (in the follow up) asked me why I felt I needed to go to the Emergency Room. That was right after lecturing me that pain meds don’t work, but Tai Chi will. I crumbled. I felt like a pathetic hypochondriac. Thank goodness for Bri and Amelia (Therapist)for reminding me what I experienced was real and crippling. It’s such an odd thing, too, because typically, I’m a fighter.
      But plagued by symptoms, sometimes I question if I’m just losing my mind.
      Neither of us is crazy.
      Oh no!!!! I’m so sorry about your vacation, nevermind the money!! How upsetting and frustrating. It’s just heartbreaking all the things that we lose as a result of being sick.
      But as you said, it’s important to try to create a life around what we can do, instead of lamenting all we can’t. Otherwise, we’ll just lose ourselves in the process.
      I’m envious you live on the coast!!! It really is just so healing. Like you, I feel at peace by the water. Eventually we’ll get there!!
      I hope you’re feeling a bit better than Labor Day. Hang in there for me ❤️ Much Love!

      1. Let me know if you come to Massachusetts!
        It’s too bad, I used to consult in NY/NJ-although now that seems like a hundred years ago, but at the time I was there at least once a month!!
        Certainly if you come this way, we can do hugs!!

      2. Whenever I plan my next trip to Massachusetts I’ll let you know so I can see you. For sure. 🙏🏻❤️

  6. Funny thing to share. I used to take meds for my migraines but after my heart attack the cardiologist told me to be careful and so I stopped them all. I now pray my way through the migraines. I take Tylenol just to take it as it does nothing for me. Anyway since I end up with nausea and stomach issues when having a migraine and can’t eat properly about 4 yrs ago I decided to try an ice cream float as Did not want to end up eating and vomiting like I usually did. The Vanilla ice cream with caffeine free coke which makes a float has actually helped me through and I tell everyone I know who suffers with migraine to try it. I actually found a woman at my drs office a nurse who told me she eats vanilla ice cream just plain vanilla ice cream when she has a migraine and it helps her immediately. I have no clue why but since it has brought me relief I advise people to try it. It takes away my nausea and settles my stomach then I eat a little pretzels or saltines and I’m good until the migraine passes and I’m able to eat food. I’ve had these migraines since I’m 13 and I used to go 3-4 days with them. Most of my early years raising my kids were in bed with migraines. It took so much away from me. I don’t know how I worked and did all the things I did. Thankful to God that I got through.
    Thought I’d share how I’ve been dealing with my migraines lately. 🙏🏻❤️

    1. Wow! Thanks. I just forwarded your message to my kids! Two of my three kids get migraines too. We tried Niacin and Riboflavin, at the suggestion of my Neurologist; he doesn’t want them on the hardcore meds I’ve tried and I agree. Those didn’t help, so I’m keen to see if this might! Thank you, Sandy 💕

  7. I can relate to this so much. There’s constantly something! Always, always something. A new doctor, a new direction. It makes me just want to go to bed. Girl, I’m so tired of my body.

    1. Oh girl, you and me both!!! I wish I could turn this old clunker in for a newer model! I’d even be fine if it was sent to the junk yard! LOL
      You’re so right, although I wish you didn’t suffer the same. It’s *always* something. Always. It really tests my sanity.
      Hang in there Faith ❤️

  8. Oh my goodness, Stace, you poor thing, nothing ever goes smoothly does it? All prepped for a vacay and you land in the emergency dept. I’m amazed you managed to get away in the end but I’m so glad you did and that you had a lovely time, health issues aside. Love the photos! If/when you move to Maine, can you take me with you? I’m pretty short, I can fit in a suitcase!

    I was suggested Botox for migraines but couldn’t face the thought of it, nor the expense if it didn’t help. I think you were brave going ahead with it! And it’s positive to hear there’s some kind of improvement already, so I’ll keep my fingers crossed for you.

    I’m with you on the changing seasons. I could cry thinking the summer’s over. We didn’t get much of one here in the UK and already my body’s struggling with the cold so I can imagine just how much I’m going to moan & whinge when the proper winter hits!

    What an odd thing with the vision, and I can imagine that definitely being rather scary when you’d otherwise been able to see well and clearly. So I guess if it happens again at least you have the glasses, otherwise it’s $300 for eye furniture you don’t need. They should have a refund policy because they’ve advised you need them when you don’t!

    I really, really hope all is well with the MRI for the brain lesion. When do you anticipate getting the results? And are you still waiting for the next mammogram appointment? I’m not sure what to say about the stomach/cyst issue either. Any lump is ‘not normal’ and nor is such pain. What are they suggesting about doing with a tear in the muscle and the cyst?

    You have been through so much and to face a month of tests and appointments and results and uncertainty for October is not a joy-filled prospect. Hang in there. Forget being productive, just focus on you, your health and mental wellbeing, too. Please know we’re thinking of you and I’m always here if ever you want to talk or vent or anything. Sending lots of love and hugs and my very best wishes your way  ♥ ♥ ♥ ♥
    Caz xxxxxx

    1. Absolutely!! I would be thrilled to take you with us!! I’ll even layer your suitcase with blankets so it’s more comfortable! LOL I was determined to still go on vacation, but boy, we were nervous it wasn’t going to happen! What a mess. It was tough, too, because I knew my Daughter’s boyfriend was going to propose, we’d been planning it for weeks-so I was terrified I was going to ruin everything by being sick. Not the lead up I had hoped for. But we got there!!! And the proposal was awesome!
      I have been arguing with the Neurologist for about 18 months over the Botox. I even tried Topomax one last ruinous time, to disastrous extent. I was so afraid of the 31 needles and haven’t had good luck with any migraine treatments. But at this point, I pretty much constantly had a headache or start of a migraine. And OMG!!! Even at half dose, the Botox is working!!!! It’s kind of crazy! It’s SO beautiful to not go to bed every night with killer head pain!
      This morning we have our fireplace on. I’m SO not ready for this. It was such a gorgeous Summer here and our winter is just bitter. And I’m with you, everything hurts with the cold.
      The vision thing was really scary. I try so hard to be brave and not to panic, but that really frightened me. After speaking to the Neurologist the other day, I think he may be right…..ten years ago I had a migraine with stroke like symptoms; face falling, pins and needles & numbness in right arm and slurred speech, aside from the pain. It was diagnosed then as a Basal Migraine. But that Neuro moved to Hawaii and we never really discussed the specific type of migraine again. Now reminded, BMs do have symptoms like the drunkenness and blurred vision. So I think that may be the answer (yay!). Now knowing that answer and that there’s no more lesions or brain damage, we can move on to tackle the next thing. It’s so traumatic to constantly be faced with such terrifying possibilities. I try so hard not to panic and to maintain a grateful, positive sick/life balance, but when it all comes crashing down, it’s a huge challenge to do so.
      As we wait for next week and 7 appointments in 6 days, I just pray for some believable answers and good news. I’ll be super grateful to get through it.

      We ALL go through periods like this and it’s awful. While I try hard not to whine or complain, sometimes I feel like sharing it may help others who struggle through the same. We all feel vulnerable and scared and that’s totally ok. Who knows, but maybe discussing some of the crazy symptoms will help give someone else answers or peace.
      Thank you SO much for your support, Caz. I genuinely cannot thank you enough. Instead I’ll send virtual squishes 🤗❤️
      ps I hope you are doing well after ALL of your recent events 💕

  9. I just discovered this blog and my heart goes out to all of you who are suffering so. It makes me feel like my suffering is nothing in comparison and it’s pretty bad. But I am replying because I may have some important information for those suffering with eye problems. Briefly here’s my history. I was diagnosed with Rheumatoid Arthritis (RA) in 2013 and it’s somewhat controlled with medications. However, after surgery in April 2018 severe chronic fatigue returned thaery. I assumed it was just a major RA flareup and it became the lost summer. In the fall it improved somewhat, especially the fatigue. However, by December it all came back and more so. Now there was also stabbing pains evet had improved with RA meds. In addition, I started having burning in my feet and my left leg where I had the surgrywhere, painful aches throughout and migraines that I had never had before as well as muscle spasms, etc. You know the drill. . Finally in April of 2019 I started going through all kinds of tests and nothing definitive came of it. Then my left eye felt weird, kind of a pressure feel. I saw an Optometrist for my annual eye exam in June. I told him my symptons but he said my eyes were in excellent health. By July, not only did I have pressure in both eyes but horrible eye pain and blurred or out of focus vision. At this point my Rheumatoligist diagnosed Fibromyalgia and my Neurologist diagnosed small fiber perepheral neuropathy. Also now my tongue was also burning. No one could account for my eye problems or the burning tongue, It took me 3 mos to get into an Opthamologist.appt. I told her my diagnoses and symptons. Again I was told I had excellent eye health. Coincidentally, just before the visit my good friend’s grandaughter who has suffered for many years with several neuropathies went temporarily blind in addition to the eye pain. She went to an Opthamologist in Boston and he was able to tell from the eye exam that she had small fiber neuropathy and that is what was causing her problems. He was able to have a serum of eye drops created with her own blood that immediately improved her condition So I mentioned to the Opthamologist what the Dr in Boston was able to see in the exam. She told me I can’t imagine how an exam could determine that. So when I kept pushing for help she could only suggest glasses for light sensitivity. So totally deflated I left and immediatlely started searching the internet and came upon an article that really opened my eyes; no pun intended!
    I found a few months later one of the 2 people that authored the article was the grandaughter”s doctor, Dr. Pedram Hamrah,who helped her. Those of you in Massachusetts will be happy to know he is in Boston.

    Here’s the article’s url: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5607443/.

    Understanding Neuropathic Corneal Pain-Gaps and Current Therapeuticpr Approaches.

    What the article tells you is that the problem cannot be seen during a slit exam used by Optometrist and Opthamologist. They use a tool called In Vivo Confocal Microscopy(IVCM). Unfortunately, it is expensive and mostly found in teaching hospitals. Tomorrow I am going to UF Gainesville where they have IVCM and my appt is with the Chair and a Professor of Opthamology at UF Gainesville.

    1. First of all, thank you for commenting and providing such great info. It’s really great to meet you, Diane!! I have no doubt this will be helpful!
      Next, your suffering is no less horrible than any of ours. Suffering is awful no matter what and it comes in all shapes and sizes. What I love about everyone who comes here is that we can all relate to what the other lives with. I am so proud of all of the support, help, advice and encouragement that I have had the privilege of seeing people bring here. Yourself included.
      With all that said, I’m sorry for all you’ve been struggling with. That’s a lot. And it’s so much worse to constantly be told everything is normal when you truly feel sure it isn’t. That same cycle has left me seriously questioning my sanity, more than once. I will say a prayer for you for your appointment tomorrow and send you well wishes. I hope you get some answers!
      Funny enough, I’ve been grappling with seeing a Neuro-Opthamologist. I live in MA, outside of Boston, but close enough to get there (with help) and was referred to a pretty selective Doctor at Lahey Clinic. I wasn’t going to go, as I never get any answers and my Daughter is getting married in April-so it’s a super busy time. Then I walked full on into the wall the other day. So as much as I keep getting told my eyes are fine, things like walking into walls (during the day) indicate that something is as amiss as it feels. I struggle with depth perception, blurriness and overall impairment-on top of near constant headaches and migraines. SO I will be taking that appointment after all. My Neurologist’s Nurse has never even heard of a Neuro-Ophthalmologist. So the article and your info come at the perfect time. Thank you.
      Wishing you well tomorrow, Diane!! Best wishes and much love, Stace

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