Hello and Welcome back to my world. I’m still here and hoping to go home tomorrow. Thankful my counts are coming up on its own. I said counts were 7.7, I meant it was 7.2 and now counts are at 7.7. I’m still having a good doctor on my team. My pain isn’t as bad as it was when I came in so I’m thankful for that. My legs hurting but they starting to ease some. I’m looking into new meds for my illness. Waiting hears back from them. My nurse practitioner told me about it a few weeks ago. It was either the pill one or the iv one once a month and had to drive so that was out the question. I have the doctors asking me about taking the cancer meds again. But I’m good. Some doctors dont know its more meds out there for my illness. Be doing another post about the. We meds. Waiting to see if my insurance approves it. Until next time. God Bless
Hey and Welcome to my world. It’s been a while since I did one of these posts and let me tell you. Yes, I have been in hospital. I had started working on the update just last night. I started hurting Friday afternoon but had stuff to do like washing and folding and grocery shopping. Your probably thinking health before all that. Maybe so, but I’m hard-headed and tired of going back to the ER every other week. Anywho I took a shower and meds and laid down for the night. Next day pain was still there but not as bad as the night before. It had moved to my back and leg but by night the pain had a return and was getting worse. So another shower and meds and laid it down for the night and watch some television to help relax and put me sleep. Throughout the night I notice I was getting pain around my ribs and would rub them and go back to sleep. Come morning I thought the pain was gone till I got up to go the restroom. It was more intense and rubbing wasn’t working. Another shower and meds with breakfast of course and a phone call to my mom to let her know. She was like maybe it’s gas since had lettuce in my taco last night. I tried drinking sprite and burp a few times. I gave it a few hours and pain was still there to the ER and I wasn’t happy about that. The set up is different since COVID 19. I take it they have different precautions in each of y’all areas. Two nurses in front of the entrance. I told them what was going on and she told me which window and where to go and wait till the name is called. Took almost an hour just get in the back to be in triage, but had to wait to get pull in back for a room. Had a nurse hadn’t had before and she didn’t want to really listen to me about my port. If it wasn’t for another nurse in the room. I don’t want to even think about it. My counts are good for now. My retic at 10.5, which isn’t good. It’s a sign letting me know I’m in crisis. I had a good nurse practitioner that I did have before. I’m thankful for her and how quickly she moves to get me comfortable and admitted. It’s going be a long night, they have me on meds by mouth. The IV dose was 1mg and that’s not what i take. Since the COVID crisis seems they have to be careful with IV meds on the floor but not ER. We shall see how this goes. Until tomorrow I pray all is well with each and every one of you all. Stay safe and inside. Blessings
Welcome to My World. I made it a year without admissions. When you know your body, you know your limit. I tried so many times to push myself so I could make it to the little lady party the following day on 18. It was strange getting admitted when the dr. on the floor told me and not the E.R doctor or nurse. I wasn’t crazy about having to deal with E.R doctor, to be honest, we don’t have a good past. He did give me the wrong meds before. Thankful it wasn’t my time to leave here. After coming in and talking to me. Idk what kind of meds he was trying to give me. It’s something they give preg woman. Didn’t touch my pain but was trying to put me sleep. Different Things we go thru when dealing with people in the medical field makes you wonder how they got a degree. I didn’t have my usual nurses I usually deal with so having one got in E.R wasn’t umm pleasant. Getting on the floor was a different story. I was glad to be on first-floor just not crazy about the room I was in. I didn’t like how the doctor did my meds because the pain wasn’t been touch and had to practice my breathing to get thru the night and the next day till the doctor came to see me. When they see your counts still dropping they want to move and so right by you. Didn’t have the doctor I was used to having when all they have do is look at my file. Makes you wonder why they make stuff harder? My counts were 7.4 when I arrive, retic was 9 and hematocrit was low as 20.3 and the next day it was even lower in 17 and I was 6 in my counts. So who was looking at blood transfusion that they haven’t had in over a year or more? Believe or more. I got cross and type but had to wait till my blood was found since I have antibodies. Took it a few days which was a surprise. What was a bigger surprise I was itching the whole time during the first unit? We had space the other unit out. The same thing happens to that and they stopped it. I never had that happen before. So they wanted to clean up the mistake and I’m still waiting to hear what happen. I have 3 doctor appointments coming up. So I’ll find out if anything happens are not. If you wondering if I got medicine to prevent itching and answer is yes. Always have to get it, so I won’t have a reaction. Just this time around it didn’t work. I even got steroid meds for the second unit and still the same reaction. I wasn’t crazy about steroids but hey whatever helps. One does of steroids can’t make me gain weight. Lol. The one unit brought my count up to 7.3 and it drops till 7 the next day. I didn’t want to be there for my birthday, so was glad to get a discharge. I hate that haven’t been as active in the blogging world but still taking it easy. I did t know my counts was that low when I went in. You think it’s a small thing and it can be a major thing. Does make me slow it down some and take care of myself. It’s hard to do that and grieve at the same time. It’s hard to deal with sickle cell and remember not to get to happy are excited or whatever. It’s possible it can kick a crisis in. So thankful for all the kind comments and prayers. God sends the right people in your life. You never know who you need and why, but it’s truly a blessing to have. Pray all is well with each and every one of you all. I plan on doing a post with doctor visits. I know one doctor I’m meeting for the first time. Hope it goes well. Hate new doctors and starting over. Sighs. Do anyone else feel that way? Ok, maybe not hate it dislike. Who knows I may just hate change. Lol until next time stay bless.
Hey and Welcome to my world. It’s been few weeks since I wrote update. Every since then it’s one thing after another. Last month I ended up in hospital three times. Got admitted the last visit. I ended up with flu, due to someone sending they sick child to school and passing it to my niece. Please for the love of God, stop sending sick kids school. The first visit was negative, was running fever of 103. They didn’t keep me but sent me home. Oh yea they wanted to say UTI was the case of my fever and pain. Guess who got worse and had go back. Check for flu, and won it. Seciously I wasn’t please. They didn’t check anythingelse. Couple days later woke up with chest pain. Praying it go away but no can do.I had go back and let me tell y’all I waited four eyes in lobby. They wanted say of her pain from her uti that’s why they didn’t take me serious. I had keep myself calm. It wasn’t busy I arrive lil after 4 in morning. I had to make me way to register just to see why the hold up was. She was like they trying get room. That was lie when so many people was coming in and out. I had let her know I came in with chest pain and back and leg. When you having chest pain they suppose take you to the back. She made call to back and few mins later I’m called back. Guess what? No ekg, x ray, pain meds. Nothing. They tried cAll me back earlier for labs but they know in my file says port since hard to stick. Oh I went back but she miss and she didn’t understand why they wasnt doing port. Got port excess finally after they call me. Labs drawn, order fluids and antibodies. Here they come with tordal. Had wait 3 more hours to I got room. My count had drop more and so retic was high. Only way find out cause tech came to type and cross me. Oh yea when so call nurse practitioner came in she was like we may send you home. I’m like wdf. No ma’am. I was just shock on whole treatment, but you know what I shouldn’t be. That’s how sickle cell patients get treated. It’s bad enough we dying like no tomorrow, because so call doc and nurse practitioner not doing there job. Once on floor still no pain meds. Had keep praying and staying calm because that just how much I was hurting. Finally got meds but pill. Takes pill longer to work. I had been crying and praying. Three hours later my nurse return and says I find you doc that had you before and prescribe me my usual meds. Praise God! She got my meds and doc comes in and I tell him what’s going on and that I didnt get ekg are x ray. He was shock and order ekg asap. I could had acute chest. Thank God no acute chest. They did ekg two days in row and x-ray the next day. I had four day stay. I ended up getting blood, because counts drop. Blood came day earlier and let me tell you I was happy hear it. It was my first hospital stay for 2018. I only had two last year because I truly gave up on medical field. Back in October I was in week and day.
I tried to give hydrea a try again.( if you wonder what hydrea is, its cancer meds but sickle cell patient could take it to lower crisis and hospital visit). I couldn’t do it. I just didn’t like the outcome. It brought my counts up, but I started to have chest pain and I couldn’t take it. It’s my body and I’m the one dealing with outcome. I had mention about chest pain and she was like I never heard not giving people chest pain. Lets just say I did my own research on meds. Had doc appointment today and she mention a new meds just for sickle cell patient. It comes In the mail. I plan on posting about it once I start taking it. I’m praying I didn’t leave anything out. Until next time. God Bless:)
Today isn’t a good day, I have been hurting since Tuesday. I haven’t seen inside hospital e.r since the beginning of the year. Some days are better than the others. I may be going to the hospital later today, but let me tell you, that’s the last thing I want to do be honest. But the meds aren’t working, I haven’t had pain meds that hospital give it a long time. I have been taking nerve meds to relax, but it’s not working. So I know what I need to do… It’s the idea of ignorant doctor knowing more about my illness that’s turns me off on going to be treated. I truly believe some doctors are out to kill a lot of us with this illness.. Oh, your blood count looks fine, so we not going to do anything. The last time I went. My retic was high, did the idiot check my counts nope just retic. Did he give me any meds that I was suppose to get. Nope, he gave me something I never had before and it made me feel worse. Did he give a damn, nope. They truly believe giving us fluids should help without proper care. I just hope when I do go to the hospital I don’t have to deal with idiot doctor. My whole body is betraying me in the worse way. sighs…Do keep me in your prayers, I’ll be cutting these post short, because hurting too bad to focus properly. I pray all is well with each and every one of you. God is truly good all the time,
no matter what we go through. He got us.
Hey and welcome to my world. It has been awhile since I posted an update on what’s going on. I had doctor appointment Friday morning, and miss it due to a blowout. But thankful we didn’t get hurt. We got someone to help us change the tire, and then the spare was flat. We had to put air in it and made out a way to tire place, to get the two front ones replace. I was two hours late, and they were gone from the clinic. I was so ticked off since I hadn’t been feeling my best whatsoever. I was glad to get my labs when I call the number they gave me. My counts were so so. I was surprised it was high as she said, but she said it was low for the type of Sickle Cell, but retic was high. Now I know why I been having the darn headaches I hate. What a way to start your birthday. I know I mention in few update post on finding a new primary doc, well I have and can’t wait to meet her. I have never had a woman doctor. I had them while in hospital but not as primary or sickle cell doctor. I shall keep you’ll post. My dad had a test the same day I had a doctor appointment to see if the treatments are helping and he just find out Tuesday when he went back for his treatment. Let me tell yall God is truly good all the time. Not just cause he got good news but just cause it has made me realize not to take love ones for granted. I hope everyone is doing good and in good spirits. Remember to let your loved one’s know you love them before it’s too late. I know it’s not much of update since my thoughts are everywhere.
Many Blessings to you all… God Bless:)
Good Morning World,
Wanted to do update for y’all. I’m still here, hoping go home today. My counts was still 7 and retic 12. I’m hoping things start looking up today so I can blow dis joint.. lol lately we been getting rain so we have been under tornado watch and flash flood warning as well. As of today my retic is 16 now. Its bee awhile since my retic have been dis high. I was hoping go home today. Ty for the prayers and comments, truly means a lot to me. I have a great doc and nurses. As the doc said to me today. His here to serve me… his truly dedicated to his patients. My right hand is starting get better. It was swelling up, made it hard for me to move fingers. Well I’m going to crash out. Pray all is well each and everyone of you all.
Hey Everyone, and welcome to my world. I haven’t been feeling my best but been trying to do what I can, as of right now. I have made some visit to e.r since my doctor have been on vocation. lets just say them visits’ didn’t go so well. I got sent home every time feeling worse then before. First time I went, had rude nurse practiner… It took God him self for me to hold my peace and not lose it. Next time to had cool doctor, he explain everything to me on dis visit. Since my blood count looks fine, didn’t see a reason to keep me. He also told me that I know ya’ll can have pain even if blood count looks fine and retic. He tried to do everything he could, but since obamacare everything seems to be difficult to do. Hmm always something. Must admit its getting crazy for me as a person with chronic pain, if meds at home not doing its job. Taking meds and drinking plenty fluids (water). I guess it a roll into E.R on my death bed then I get treated the proper way. Other then that my plumbing problem is almost taking care of that’s why I’m posting from home. I’m dealing with my nagging headaches, so it’s making it harder for me to post and read like I want 2. So do bare with me. I hope everyone is enjoying there summer, I hate the summer, its hella hot.. And not good for me. Who wants to stay in the house all the time? Looks around not me… I do pray all is well with each and everyone of you all. So thankful for all who have join my journey. I now I have been slipping big time. So do bare with me, I have been writing, I just need to type it all up so I can share it with you all.
I haven’t did update on the lil one’s in awhile. They getting so big and tall. Lil lady is 6 now and Mr. Man is 4. School will be starting soon for lil lady and of course Mr. Man will be going back to Daycare. I must say so glad to be home to enjoy peace and quiet. Maybe my headache will stop. I’m praying it does.. They grow up so fast right? Lil lady have become so freaking sassy its driving me crazy. Nast lil attitude for someone so young. Ha, I think I maybe rubbing off on her with attitude part. Ha. Mr. Man have one as well, and his tantrum is grr… That’s all I’m saying. Nope I’m not missing them whatsoever on this point. On flip side, the MOM who had them finally came home from prison. I must say I haven’t change my mind about her. I need proof that she done change and want to be in her kids life. One visit from my lil lady, she done got worse. Attitude … I already not liking it, but hey I’m not finna stress myself about it.. Another quick way to put in hospital looking crazy… Believe that’s enough update for now…
Good Morning, Welcome to my world, I know its been awhile. I have been in pain for over two weeks. I have made time to go ER, lets just say one didnt go so well. I got bless with rude nurse who threaten me and told lies. I thought to myself im not in mood for stupidity when im sick. Yes, did check her once, she got mad slam door. She thought calling my mom make her look better, if you all wonder my age I just said goodbye to my twentys, and dont live with my parents. If you follow me on twitter, you may think im lying about my age. Oh well thats on you. Anyways she been reported, if you dont love your job for whatever reason, get a new one. My other visit was okay, but since hemoglobin was ib 7″s and retic wasn’t to high, rhey gave me fluids, meds. Hmm both times oh and not so favorite oxygen. Im at the point im just tired. Sighs…. I do have doctor appointment tomorrow, trying hold out. Waiting see blood doctor next week.
Hey and Welcome to my World, I’m still in hospital and hopefully I get to come home tomorrow. I should know something in due time. I still can’t have transfusions, but it seem the meds they have me on is finally working and that makes me happy! I have been on some new meds since May, and ready to get off it. I’m actually on a lot of new meds, but this meds I really ready to get off because it’s interfering with some of my other meds, that I need on everything basic. Sighs. It feels good to finally get some sleep, I believe I’m still tired, but I’m actually on my last week of studies, and I need to try to catch up before the week is over with. So much to do in so little time. I have had some great nurses, had one rude nurse name Mary. Makes me wonder how she got a job to be Nurse Assistant, if all she does is complain, I would hate for her to be nurse, and she says she going back to school for it. Well, I hope peeps run the other way and don’t look back, I’m just saying. My bestie mom finally came home from the hospital the other day, and she is doing much better, but got heartbroken phone call, that she is not her self, she lost some of her memory. I spoke with her a few days ago, she knows who I am. It breaks my heart when strong woman a God is struggling the way she is. It’s truly breaking her daughter heart, because she want to take care of her mom and not rehab place. Doctor just told me not to long ago that my retic count has come up, I’m hoping to hear my blood count has come up as well. I’m praying for some good news. Looks like my head is everywhere with this post, please do forgive me. I have a lot going on with me at this time. Thank you all for the prayers, truly means a lot to me. I pray all is well with each and every one of you. God Bless 🙂